NICE guidelines for treatment of autism in children and young people published

NICE, The National Institute for Health and Care Excellence, has today published new imageguidelines for the treatment of autism in children and young people. “Autism – the management and support of children and young people on the autism spectrum” has been developed in collaboration with the Social Care Institute for Excellence (SCIE) and is the culmination of a long period of public consultation.

The guideline includes the different ways that health and social care practitioners can provide support, treatment and help for children and young people with autism and their families and carers, from the early years right through to transition into young adulthood at 19. It states key priorities as:

  • Full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.
  • Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism. This includes the impact of autism on the young person and their whole family or carers, how to assess risk and how to provide individualised care and support, ensuring a consistent approach across all settings.
  • Making adjustments to the social and physical environment and processes of care. This includes using meaningful visual supports, personal space and sensory sensitivity requirements and arranging appointments at the beginning or end of the day to minimise waiting time.
  • Working with parents, carers and teachers to use play-based strategies aimed at increasing attention, engagement and reciprocal communication in the child or young person. The guidance states that any interventions should be delivered by a trained professional.
  • Understanding enough about the child’s condition to be able to anticipate and prevent challenging behaviour. This includes being aware of sensory difficulties, any mental or physical health issues such as pain or anxiety, co-existing ADHD, communication problems or changes and difficulties at home.
  • Families (including siblings) and carers should be offered an assessment of their own needs, including personal, social and emotional support. Practical support such as short breaks and emergency plans and assistance with planning for future support of the young person.
  • Transition to adult services should inform and include the young person in the planning and, where appropriate, their parents or carers, as well as informing about their right to a social care assessment at age 18. For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) in England, or care and treatment plans in Wales, as an aid to transfer between services.

Research Recommendations

The guidance also made several recommendations for future research for the improvement of autism services.

  • A key worker approach for children and young people with autism and their families should be formally evaluated in a randomised controlled trial.
  • Managing behaviour that challenges in children and young people with autism. A group-based parent training intervention (such as educating parents to identify triggers and patterns of reinforcement) should be evaluated using an RCT.
  • Managing sleep problems in children with autism using sleep hygiene intervention or melatonin in children (aged 4–10 years) with autism.
  • Treating co-morbid anxiety in children and young people with autism to look at the comparative clinical and cost effectiveness of pharmacological and psychosocial (such as Cognitive Behavioural Therapy) interventions for anxiety disorders in children and young people with autism.
  • Teacher-, parent- and peer-mediated psychosocial interventions in pre-school children with autism to investigate if comprehensive early interventions such as the LEAP model, are effective in managing the core symptoms of autism and coexisting difficulties (such as adaptive behaviour and developmental skills) in pre-school children.

What NICE says not to use

The guidelines also state interventions that should not be used, which may prove controversial to some.

These are the use of neurofeedback or of auditory integration training to manage speech and language problems and the use omega-3 fatty acids to manage sleep problems.
The guidelines also state that the use of secretin, chelation or Hyperbaric Oxygen Therapy should not be used to manage autism in any context in children and young people.

The above is just a prėcis of the whole guideline,  that you may wish to read in its entirety, but it gives an overview of what is included. You can find the appendices here What do you think? Are you pleased with the guidance and will they improve services and treatment?

He did it! Son1, 15, made the summit of Kilimanjaro!

Tania writes…

Luca Kili

Son1, Luca, made it to the summit with other team members

For those of you who have been interested in Aspie Son1’s expedition to Africa, a quick update.

He made it to the summit of Kilimanjaro! He wasn’t alone, of course. Luca was one of seven boys and three team leaders in their group to make the very summit, Uhuru Peak, Africa’s highest point on 23rd July 2013.

I had heard the numbers already from the wonderful Suzi at school, but did not know if Luca was among the ones who had made it to the very top as, despite strength and training, there are many factors that can intervene.

Congratulations to Luca and to all the boys who made the ascent, in both teams, shepherded by teachers, Sherpas and the action men from World Challenge, whether they managed the final push or not. Let’s not forget, they are all at a specialist school, although those still with physical difficulties would, of course, not have chosen to make the trip. And, they are all aged 15-17.

They have already laid a classroom floor and dug drainage trenches at their twin school, got to know the children, played football with them and cooked for them. They are now on safari before returning home next week.

I dreamed on Thursday night I was with my boy and he told me then he had made it to the top. It was such a vivid dream that I knew it must be true. But real-life confirmation came from Will Scrace’s mum, Collette, and made me burst into tears with relief – many thanks to Collette.

Thanks to everyone who has commented with kind words here and on Facebook – it’s really appreciated and will be something I can show Luca when he returns. If you’d like to leave a comment, that would be brilliant – they’ve all worked so hard.

Happy weekend!

Expedition Roll Call: (Added to when and if permission given)

Team 1: Luca Tirraoro, Will Scrace, Chad White

Led by: Richard from World Challenge, Mick Johnson from MHS

Team 2:

Led by:    

Kili teams

The teams before departure

 

 

Research links gluten sensitivity to autism

This report is from Medscape Today and is about a study in PL0S One. Links at the bottom.

gluten freeA subset of children with autism have increased immune reactivity to gluten, but the mechanism of this increased reactivity appears to be distinct from that involved with celiac disease, new research shows.

The results also indicated an association between elevated antibodies to gluten proteins and the presence of gastrointestinal (GI) symptoms in the affected children.

“There is evidence that immune system abnormalities are associated with symptoms in a substantial number of individuals with autism,” senior author Armin Alaedini, PhD, assistant professor of medical sciences in the Department of Medicine and the Institute of Human Nutrition at Columbia University Medical Center, New York City, told Medscape Medical News.

“In addition, several studies have evaluated gastrointestinal symptoms and defects in GI barrier function in affected patients. Some have pointed to higher frequency of celiac disease, family history of celiac disease, or elevated antibody to gluten among autistic children, but these studies have been inconsistent about such associations,” Dr. Alaedini said.

Read the rest of the Medscape Today report here (You may need to register for free if the whole content is not immediately visible.)

The study was published online June 18 in PLoS One which is an open access journal.

I know many of you are not surprised by this report – do you follow a gluten free diet with your children? If so, what results have you seen? Leave a comment – we’d love to hear and share your views on this.

 

 

Asperger’s, anxiety, Angels and an African adventure

Tania writes:

Eighteen months ago, Asperger’s Son1 signed up for the trip of a lifetime.

His special(ist) school had joined up with World Challenge to organise a month-long expedition to Tanzania in Southern Africa. Participants would carry out project work in their twin school, Shia school, go on safari but most importantly, climb to the summit of Kilimanjaro.

Kilimanjaro

Destination Kilimanjaro

The school, More House, in Frensham, educates boys from 6-18 who have a variety of learning difficulties. They are bright boys, but may have dyslexia, Asperger’s, dyscalculia, dyspraxia and other similar disabilities and have a different learning style to that in mainstream. The school has a growing Learning Development Centre with an expert OT department.

So, a trip up a 5,895 meter mountain, the highest in Africa, is not going to appeal to every year 10-12 student. Especially the part where they had to raise the £4k plus cost themselves.

But Son1, whose difficulties are social and communication rather than physical (apart from a lifelong tendency to fall over nothing and break stuff just by looking at it) was up for it. He took part in the training and the fundraising and learned valuable skills along the way.

brotherly love

A brotherly farewell

And it hasn’t been only him who has had to learn skills – I have tried (and often failed) at not transferring my own anxiety to him. Anxiety is one of his major difficulties but he has learned to hide it to fit in and so it comes out in other ways, often aimed at us. We have learned to understand this and to breathe deeply and not shout back.

And so, today, 18 months later, the day of departure has arrived.

Top Dad, a former Royal Marine Reserve, has had endless fun “helping” (okay doing) the kit prep. He confessed that for weeks he’s thought it was him going up the mountain and is now devastated to realise he won’t be going himself.

Amber good luck Angel

Amber good luck Angel

So, checklist: Good luck amber angel and laminated angel prayer from (loopy) mum? Check. Immunisations? Check. Epipens for allergies? Check. Passport, visas, paperwork, four season sleeping bag (it’s freezing at the top), walking poles? Check, check, checkety check check.

Me with Son1

Tania with Son1

Tension has been high for the last 24 hours with Son1 answering every parental enquiry with a snappy, tetchy response. Anxiety hovered uneasily over Tirraoro Towers.

He said farewell to Son2, who is at home again, having decided school activity week is boring and not for him, thank you. He is an elegant school refuser. No shouting, no tears, just a polite decline.

kitcheck

Last minute adjustments from Top Dad

Anxiety joined us in the car on the way to school. I got a half hug when we got there, Top Dad was refused one. And then he was gone.

Will I see my amber angel again? Will we see Son1 again? Stay tuned. For those of you who have a spiritual side, here is my Angel prayer for my precious boy.

I  call on you, Archangel Metatron
And as many angels as needed
To protect my son, Luca on his travels
To surround him with protective angelic arms
And keep him from harm
And return him to me safe, healthy and happy
Guide him to get the most from his journey
And to gain in wisdom, compassion and spirituality
Help him to think ahead before he acts
And to keep going when he wants to give up
But most of all to enjoy his time
And know that we are all thinking of him
Thank you.

A spin around The Autism Show

Last Saturday, Debs and I visited The Autism Show at London’s Excel. Poor Debs fell over the dog a couple of days earlier and has her wrist in a splint so my long-suffering husband, Marco, came along as chief wheelchair-pusher and photographer, so thank you to him for putting up with my constant requests to go, stop, get closer, further away and turn left and left (I can’t remember right).

It was great to put faces to names and we excitedly foisted lots of our brand new SNJ pens onto people whether they wanted one or not.

We had an interesting chat with Mark Hayes from Autism Eye which is a great publication – free copies were available at the show. The magazine is also available as a digital download as well.

IMG_0971

Tania, Anna Kennedy, Debs

It was a whistlestop tour as I had to dash back to watch Son1 play bass in the school Jazz Band at a local Fayre  (they were splendiferous, if you like jazz take a peek at this. You can’t really see Son1, he’s the blond kid right at the back). Because of this we didn’t get time to see the Autism’s Got Talent show, but we did meet and have a chat with its founder, the tireless Anna Kennedy. Among her many achievements, Anna has started her own autism school, published a dance DVD for people with autism and hosted many, many events to improve the lives of young people with ASD, as well as having her own special needs children.

IMG_0961

Peter from SEN Mag, Tania & Debs

I was also delighted to meet in person, Peter Sutcliffe, the Editor of SEN Magazine. I have written for SEN Magazine in the past and subscribe myself – it’s a great source of information and ideas!

The award winning team from SEN Assist were also there. They make educational software for children with SEN and Adele, the company’s founder also works at Freemantles Special School, so she has plenty of young people to test her products on!

There were lots of stands with interesting resources, specialist schools, sensory equipment, legal services, and even products made by young people with autism from LVS Oxford. They teach their students real skills they can use in adult life, which of course, brings with it increased confidence and self-esteem. I bought some of their lavender sachets, my favourite scent (very old fashioned, I know!) Son2 decided when we got home that as he is a fan of lavender as well, I must have bought them for him. I have not seen them since but his room is smelling suspiciously fragrant.

IPSEA were on hand to give free advice in private cubicles and there was a big presence of course from the NAS and Ambitious About Autism

IMG_0969

Evelyn Hope Ashford & Debs

One great resource we will be featuring in more depth soon is Advocacy Service, Education Equality founded by Evelyn Hope Ashford. It is a low-cost advocacy SEN service and their advocates can also accompany you to meetings, tribunals and so on. Check out their website for more information.

We met so many amazing people in such a short amount of time! I really think the world of special needs is blessed to have so many energetic, dedicated and just bloody amazing people working to help children with SEN/D. Many, if not most of them are in the sector because of their own direct experience as parents of children with disabilities.

Finally, I end the post with an apology. I was due to co-present with Debs at the Wordswell Towards a Positive Future conference this Thursday. Unfortunately, I have realised after the weekend’s activities of Autism Show, Fayre and supermarket (how very dare I!) left me too exhausted to move on Monday, that it’s just not possible for me to manage the demands of travel and a day long conference. EDS and PoTS strike again!

However, Debs will be holding the SNJ fort and she has a brilliant presentation about parental co-production. I understand there are just a few places left, so if you are near London or can travel, tickets are just £30 for parents including lunch – and the chance to meet Debs of course and grab an SNJ pen – who could resist?

Other presentations will be from IPSEA’s Jane McConnell and Child Psychologist Charlie Mead, both of whom I am very sad to be missing. I am a great admirer of Jane and Charlie is one of my heroes for his brilliant work with vulnerable children.

If you do go, let me know your feedback – it’s a great line-up and our Debs is a complete star; I’m so proud to have her with me on Special Needs Jungle. We have lots of exciting things lined up in the next few months. The TES logo top left is a clue!

Did you go to The Autism Show? What did you think?

Dr Tony Attwood’s views on Asperger’s and girls

Tania writes:

I was recently lucky enough to attend a conference given by both the world-renowned expert in Asperger Syndrome, Dr Tony Attwood and Dr Carol Gray, the inventor of the social story.

Attwood

Tania with Dr Tony Attwood

The conference was organised by Freemantles School, a special school for children with autism spectrum disorders in Surrey. I’m planning to write a post about Dr Gray’s presentation another time, but this post will focus specifically on one of Tony Attwood’s themes: Asperger’s and girls.

Tony Attwood has already written a book about the subject, so if this article piques your interest, you might want to buy the book to delve deeper (link at end of article).

As you know, I have two Aspie sons and have long suspected that I also am an closet Aspie (though my husband would counter that there’s nothing ‘closet’ about it!). After listening to Dr Attwood’s presentation, I could have cried – in so many ways, he was describing me!

It has been generally accepted that the prevalence of Asperger Syndrome in girls is about 1:4 of that found in boys, but Dr Attwood believes this to be more like one girl to every two boys.

The reason for the misconception is because girls with Asperger Syndrome present very differently to boys with the same condition and “fly under the radar of a diagnosis”.

Whereas boys are more often diagnosed in their primary years, for girls it is not until they reach secondary school that the difference becomes more apparent, because girls’ coping and camouflaging mechanisms and their skill at imitating mean that they appear to assimilate with their neurotypical peers.

The route to diagnosis also differs from that of boys and comes more often after a secondary disorder is diagnosed in adolescence such as Anxiety Disorder, depression, Borderline Personality Disorder, an eating disorder (as a method of control) or selective mutism (because they are overwhelmed).

Then, once a detailed developmental history is taken by a clinician, the diagnosis of Asperger’s becomes apparent (if she is lucky enough to have a knowledgable doctor!)

While her peer group moves seamlessly from childhood friendships into teenage talk, conversation and cliques, the Aspie girl finds herself internally cast adrift on a sea of choppy water and hidden whirlpools. She is unable to read the unspoken rules and meaningful glances that are so important to fitting in – though she often manages to cope by copying what the other girls do.

“Sometimes they do it so well that you wouldn’t believe it until the mask falls”, Dr Attwood says. He described the profile of ability in girls as:

  • Observing and trying to understand before the make the first step
  • Reading fiction or watching soaps to learn about inner thoughts and feelings
  • Decoding social situations in doll play and imaginary friends
  • Apologising and appeasing for social mis-steps
  • Being a chameleon

Aspie girls, Dr Attwood said, learn how to adopt a persona for different situations and they have learned to act so well that many affected girls say “They don’t know the real me”. The drawback of this chameleon tendency is that it can lead to depression.

Girls with Asperger’s can suffer intense fear of rejection, particularly surrounding their ability to make, but not keep, friends. They often have one friend who provides guidance and security.

I myself remember the isolation when my one friend was off school and the sheer terror at the thought of approaching other groups of girls, not knowing how to approach them or what to say. Would anyone have guessed that to look at me? Of course not.

And while fitting in at primary might be easier for girls, when they hit adolescence and they find that conforming to social convention goes wrong more often than right, the pendulum, Dr Attwood says, can often swing the other way.

This is sometimes demonstrated by the visible rejection of everything they feel they are not good at, i.e., being one of the in-crowd or the “popular girl cliques” and choosing to wear black clothes, tattooing, piercing, and sometimes, more worryingly, falling into promiscuity or the use of drugs.

For me, this is the girl saying, “You don’t want me? Well I don’t need you either; I can go my own way.” It is a self-preserving decision not to compete against odds stacked against her.

goth girlLinking up with other, similar ‘alternative’ people can bring friendship. Again from my own experience, I had a group of friends when I was 17 and 18 who were all a bit different in their dress and/or attitudes. They were mainly male. The best thing was, they accepted me, were happy to hang around with me and most of all, were not judgemental.

But Dr Attwood explained that social situations also bring other challenges for Aspie girls such as “social exhaustion”. Social interaction and the constant state of alert needed to sustain the “mask” is physically and mentally draining and requires periods of solitude to recover. Likewise they avoid “needy” people, only call people when they have something to say and prefer online communication which is, of course, completely controllable.

If you are the parent of a teenage girl with who has (or who you think may have) Aspergers, it is also important to be aware that they may perceive using their sexuality as a way to be popular, which as we all know (or know now we’re older) is never a good idea and is rarely successful at making female friends.

They are not good at character judgements and so may leave themselves at risk of what Dr Attwood calls “relationship predators”, who can smell vulnerability a mile away.

So what can be done to ensure that girls affected by AS benefit from early diagnosis? Well there is some good news: Dr Attwood has developed a new set of diagnostic criteria that is currently undergoing evaluation and that, when implemented, I believe will revolutionise the field and enable more girls and young women to access the help they need.

For more information about Dr Attwood, you can find his website at http://www.tonyattwood.com.au and his book about Asperger’s and girls here: Asperger’s and Girls

Today is Pathological Demand Avoidance (PDA) Awareness Day

The PDA Contact Group have guest written a post for us – if you are experiencing this with your child, please get in touch.

PDA is a very unknown, rarely spoken about and unrecognised ‘Autism Spectrum Disorder’.  The condition was first recognised in the 1980’s by Professor Elizabeth Newson .  PDA has always existed but it was Newson who first saw the striking similarities between these groups of children and proposed that there was sufficient evidence to warrant the inclusion of PDA as a separate sub group within the ‘Autism Spectrum’.

If you would like to learn more about PDA please click on the link here below.

It is vital that PDA becomes more recognised and diagnosed by clinicians the world over.  Across the UK diagnosis of PDA is still very patchy because it is only recognised in a few Local Authorities.

Attachment-1 At the moment many children are described as having PDD-NOS (Pervasive Development Disorder Not Otherwise Specified), A Typical Autism or Asperger’s along with a host of co-morbid disorders including Personality Disorder, ADHD, ODD, Attachment disorder or simply referred to as just being naughty leading to parents being accused of poor and ineffective parenting.

None of these currently used terms accurately describes or provides parents with the correct understanding or strategies that at PDA label does.  One label, one diagnosis, one profile and one set of strategies and handling techniques, now doesn’t that make more sense than a montage of ill fitting ones?  The National Autistic Society (NAS) and the AET both recognise PDA. It is about time that PDA is recognised throughout schools, practitioners, therapists and the wider community and by organisations such as NICE.

Correct diagnosis essential

The diagnosis of PDA provides parents with the correct profile for their children and sign posts them to the correct support groups and strategies.  This is vital for the emotional well-being and long term prognosis for these individuals.  A collection of ill fitting labels that are mashed together to try and describe the complexities of this child are unhelpful and do not provide parents with the correct sign post.  Early diagnosis, recognition and intervention can lead to a much more successful outcome for these individuals.

There is currently a huge surge from parents and a handful of professionals who are desperately campaigning to raise the awareness and profile of PDA.  Recognition and numbers are growing and PDA is really beginning to snowball with more and more parents joining the PDA support groups and demanding the correct support, help and diagnosis from their local authorities.

The time for change, recognition and respect for parents who do such a wonderful job raising their children, with next to no support from many of the professionals involved has arrived.  The time for change is now and even if PDA is not in a diagnostic manual that doesn’t prevent any one who is a professional from researching the information that is available, having an open mind and seriously considering if any of children that you come into contact with would benefit from the diagnosis and strategies that PDA offers.

New resource page

The following Resource page, very kindly compiled by Graeme Storey, is a one stop shop for everything that you need to know about PDA.  If you are the parent of an ASD child who just doesn’t appear to be typical of an ASD presentation, the parent of a child with extremely challenging behaviour or if you are a professional that is willing to be open- minded and explore the concept of PDA then please click through to this link.  You will not regret it and with an open mind you could transform lives.  The parents and children that follow in my footsteps must not go through the hell and turmoil that Mollie and I have experienced on our journey.

The PDA Contact Group is our flagship forum and group but they desperately need funds to become a registered charity.  When they become a registered charity they will be able to apply for much needed grants and funding.  Long term we are hoping that the PDA Contact Group will be able to update their website, grow and evolve in line with the increasing amount of members and awareness, provide parents and professionals with more support and information and eventually become, to families affected by PDA, what the National Autistic Society is to families affected by Classic Autism or Asperger’s.  Please show your support to the PDA Contact Forum by making a small donation, details can be found here.

Is this ASD research a potential game-changer?

oxytocinThere is new research and findings about causes and potential therapies for autism every week, but the following caught my eye in particular. I’ve reproduced a section below and you can link through for the remainder.

The following article snippet is from Medscape Medical News reporting from the 12th Annual International Meeting for Autism Research (IMFAR)

 

The research has found that intranasal oxytocin appears to normalise fixated or restricted interest, a core deficit in autistic spectrum disorder (ASD).

This expands the spectrum of normalising effects now being reported for intranasal oxytocin, essentially “completing the picture” of how the neuropeptide ameliorates the 3 key distinguishing features of ASD.

“In autism, there are 3 basic deficits — social communication, repetitive behavior, and fixated or restricted interest, where children get fixated on a particular pattern or sensory stimulation and have difficulty paying attention to other, more socially relevant cues,” Lane Strathearn, MD, PhD, assistant professor of pediatrics, psychiatry and behavioral sciences, Baylor College of Medicine, Houston, Texas, told Medscape Medical News.

“So this is the first time that this particular aspect of autistic behavior has been examined in relation to oxytocin, and we’ve shown that oxytocin has some effect on all 3 aspects of autism behavior, including now fixated interest.”

The study was presented here at the 12th Annual International Meeting for Autism Research (IMFAR).

You can access the rest of this article on Medscape here although you may need to register for free first.

When you’ve read it, do come back here and leave your views – is it just more of the same or do you think this is a potential game-changer?

 

My son and his literal world

Debs writes….

My eldest son, K lives in a very literal world and we spend half of our day trying to watch what we say, and the other half paying for the fact that we forgot.  “Watching what we say” – there you go, that phrase would have K staring at our faces to “watch” what we are saying.

Inititally, this caused us heartache, for example when we saw him closing a door and shouted “watch your fingers” and he did.  He watched them as he closed the door on them.  We hadn’t said “move your hand away from the door”.  However, it has also caused us some huge entertainment.

For a long time, K believed my name was “Hiya”.  When people visited us, the first thing many of them said as they walked through the door was “Hiya” and K truly thought this was my name.  When I intitally suspected this, I said to my parents “I’m sure he thinks my name is hiya” so that evening, at dinner, my dad said “Hi K” and K responded “Hi Grandad”, then my mum said “Hi K” and he responded “Hi Grandma” and then I said “Hi K” and he responded “Hi Hiya”.  Mummy Hiya was confirmed.  This did amuse us, especially when I left him at nursery and he would respond “Bye Hiya” or “See you Hiya”.  Yes, I know that this could be interpreted as me laughing at my son but nothing could be further from the truth.  We have to get through this jungle with some sanity intact so for us, a sense of humour is essential.

As he got older, K realised that my name was Debs and he also understood that I was his mummy.  However, he chose to call me Debs.  He would return from school and say “Hiya Debs, where’s Chris” and I would reply “Daddy is at work”.  This went on for some time and still does, however, when we asked him why he called me Debs and not Mummy, he gave me a very confused look and replied “But you don’t call me Son, you call me K”.  So yes, why should he call me Mummy – which is in fact my relationship to him – when I call him K and not Son.

Sometimes his logic just stumps me for a response.  On one occasion, K had been settled in bed, however, when I finished making a brew and walking into the sitting room, he was sat in there.  I asked “Why are you not in bed” and his response was “because I am sat down here”

shameOf course, living in such a black and white world, with little understanding of social rules can cause some issues.  Usually mortification

We had one occasion when I was trying to plug him into a booster seat with one other child (in a booster seat) and a non-petite lady in there too – not an easy task.  So how mortified was I when I asked K to move towards me and he responded  “it’s not me, it’s her – she’s fat”.  Now as a non-skinny lady myself I was horrified for this poor lady and I told him very firmly that we don’t use this word, it’s not a nice word and he was plugged in and off they went.

That evening, I asked him how the day was and he replied it was okay, I asked about the journey and he said he was “squished” in the car because the lady was fat.  I explained again, this was a word that makes people feel sad inside and not a nice word to use.  The next morning, we walked out to the car and I suggested that it may be nice to apologise for using that word and he was happy to do this.

We got to the car, he sat down and as I plugged him in, he offered an apology.  “I am sorry I said you were fat yesterday, Debs has told me that it is not a nice word and it can make you sad inside which is not nice”.  The lady accepted the apology, I smiled with pride and then……..

“Debs, it’s not my fault I am squished in here.  It’s her, she is overweight and needs to go on a diet”  The driver at this point choked, I was looking for a hole to crawl into and K said “is that ok, Debs – I didn’t use the word fat so no one feels sad.”  Want to bet?

So yes, the literal world can be amusing, heartbreaking, mortifying and a real challenge but we try hard to keep smiling.   I would love to hear your experiences, maybe we can all help each other.  We now have a rule with K that he doesn’t comment on people’s height, size, colour or clothes unless they ask him to.    What rules or tips do you have?

Autism Acceptance? It’s so much more than that…

Tania writes:

It’s Autism Awareness/Acceptance Day, Month, whatever… lots will be written today about what autism is and what it isn’t.

No one expects to have a child with an ASD/ASC, whatever they’re calling it this year. Once you have the diagnosis, it’s like entering a parallel universe of impenetrable mazes with multiple dead-ends, where people speak in strange acronyms and expect you to understand what they’re talking about.

You can get lost in the battle to secure services, support, suitable education and the funding thereof. As your child or children (in my case) grow, you will encounter different challenges such as transition to adulthood, training, independence.

If your child is five or six, you’ve probably not even thought this far ahead. This is just as well; it would be too much to cope with. We are now at this stage: my boys are 15 and 13.5 and both have different levels of need and what one may manage, the other may not.

superbabeOne thing we have learned – just when you think you’re doing okay, something comes along to trip you up and you have to take stock and look for new solutions. You are constantly operating at your maximum tolerance, so that when something comes along that you didn’t expect, it is easy to experience meltdown or even breakdown.

People on the outside often do not understand this and may judge you accordingly. This says more about them than you.

While working for better understanding, treatment and life chances for people with autism or any other condition is a necessary and constant crusade, for those families affected, it is much more personal. It can often be just as big a battle for self-acceptance and coming to terms with a diagnosis and that this is the way life now is.

For me, recent health issues have meant I have had to accept I am not superwoman and reassess my goals. After five years of not claiming school transport, I have now had to admit my limits and ask for a taxi for them. It’s a compromise; I won’t ask for both ways because  they need the security of knowing if they’ve had a bad day, it’s over as soon as they’re in the car with me.

Universal Truths

But whatever your personal circumstances, I believe there are universal truths, and not, for that matter, just for parents of children with autism, but for any parent of a child with a disability, medical condition or rare disease (named or not), so you can just substitute the word ‘autism’ for any of those.

We’ve been doing this a while now, so I feel pretty qualified to offer the following, based on my own experiences:

1. If you have never cared for a child with autism, you don’t know what it is like. Even if the parent seems fine and happy, you should never make assumptions of what it’s like being in their shoes.

2. It’s different for every family affected. For example, if you have a child with high functioning Asperger’s, it is likely to be a very different experience to life as the parent of a non-verbal, severely autistic child. This is even more true if your child has medical needs as well.

3. It’s hard work – mentally and physically, wherever they are on the spectrum. Some people cope with certain aspects better than others. Sometimes you will feel like you’ve been run over by a steamroller but you will eventually peel yourself off the floor like a flattened cartoon character, because you have to.

4. Stress and worry are likely to be your constant companions; maybe even depression. What do you expect? You’re only human. It’s okay to admit it and to seek help for yourself. In fact, it’s preferable than pretending everything is fine.

5. You will be judged. There will always be people who think they can parent your child better than you can. You will learn not to care.

6. You are likely to end up with more friends who have children with special needs than those who don’t.

7. You will feel like running away. Or worse. You almost certainly won’t end up doing either.

8. You will learn to smile when people tell you they don’t know how you cope, or that you do fantastically well. Inside you may well think, “If you only knew…” You may actually want to punch them, but it’s probably better to resist.

9. You will grieve at some level for the life as a parent you had envisaged before you actually were a parent. Then you will get over it and get on it with. After all, what’s the alternative? But at odd times, this grief will revisit you. This is normal.

10. You will read studies that tell you autism is caused by any number of things, most of which you will feel, at some point, are your fault. None of them are. Autism probably has lots of different triggers which result in similar symptoms. Read the studies, or don’t, they won’t change your reality.

All that matters is that you try to be the best you that you can on any given day. Some days will be good, some days (sometimes whole weeks) are better forgotten. Others can accept that or not; they can choose to be your friend and love you without judgement or not. You have no control over that.

Accepting yourself for being flawed and imperfect can be much harder than accepting your child’s diagnosis.

It’s what makes us human.

Special Needs Jungle has a new LinkedIn group!

LIgroupWe have exciting news!

Special Needs Jungle now has a brand new group on LinkedIn. While there are a couple of other SEN groups there, the Special Needs Jungle group is aimed at anyone on LinkedIn involved with 0-25yrs special needs and disability issues in the UK.

This includes health, education, mental health, social care, childhood illness/rare disease & its implications among other issues. And you are welcome whether you are a practitioner , parent/carer or another individual or professional with an involvement in these areas.

We aim to offer a chance to learn from each other by sharing knowledge, experiences, news, best practice and views you may not have previously considered!

There is so much knowledge available from many different sources and we’d like to offer a place for you to contribute your ideas, views, resources and knowledge.

With so many changes on the way in the wider area of special needs, it makes sense for knowledge to be disseminated and shared as widely as possible.

The group is managed by myself and Debs, so you’re sure to have a warm welcome. We’ll be on the look out for great contributions for the SNJ site as well, so don’t be shy in your suggestions!

Join, share, contribute, make yourselves at home!

If you are a LinkedIn user, you can ask to join here

Research backs Emma’s FACS battle

One of my fellow special needs mums, whom I met over Twitter, Emma Murphy, is spearheading a campaign highlighting the emerging dangers of taking the Epilepsy drug Sodium Valproate (Epilim) in pregnancy after many cases have emerged of children born to mothers taking the drug had developmental difficulties and other disabilities. It’s being described as ‘the new thalidomide’.

Emma and one of her children

Emma and one of her children

Emma Murphy has already made a splash with her campaign and today there is an article in the Telegraph about research which bears the anecdotal evidence out.

The findings were published online in the Journal of Neurology Neurosurgery and Psychiatry. Researchers at Alder Hey Hospital in Liverpool, studied 528 women in the north west of England. Just fewer than half the mothers had epilepsy and all but 34 of whom took anti-epileptic drugs during their pregnancy. Fifty nine mums took carbamazepine; 59 took valproate; 36 took lamotrigine; 41 took a combination; and 15 took other drugs.

(more…)

A morning with Monty, a very special boy.

My good friend Angela, who is my ‘co’ in co-chair at Family Voice Surrey, always has an air of unflappability. I’m not quite sure how she does it.

As well as being the parent of two sons with ASD, she is studying to be a psychologist. Angela’s younger son, Monty, is a delightful boy who attends a special school. But his ASD means that, like other children with autism, he has a schedule and a sense of reasoning all of his own that can be exhausting.

Here, Angela writes for SNJ about a morning with Monty.

***

In the distance I can hear screaming. It sounds terrifying and it’s coming closer.

(more…)

Ordering at Starbucks, Asperger’s style

Yesterday, I took the boys shopping to Basingstoke. As I’m not currently able to walk far, I sat in Starbucks armed with my iPad to do some work, while they toured Festival Place, pockets filled with Christmas cash.

Now, I’m not good at Starbucks. I don’t even like coffee that much and would rather not consume my daily calorie allowance in one latte topped with whipped cream. Then, what size do you want? I can’t even remember what the sizes are called, never mind how big they are. By the time I get to the front of the queue, I’m as glazed as a doughnut, so I always go for tea, Earl Grey, errm, medium? Ish? I know, it’s very “Mrs Brady, Old Lady” of me.

cupI hadn’t been there too long before Son2 joined me with his purchases from Lush. He is a big Starbucks fan so I gave him some cash for a drink and he joined the inevitable, slow-moving queue.

I had a proud moment, marvelling at how Asperger’s Son2, 13, was now able to queue and ask for what he wanted by himself as well as meander round the shopping centre (that he knows well) without me.

I watched from my seat as he made his choice, paid and wandered over to end to await his order. Then Son1 appeared, exchanged a few words with his brother and came over to me, looking incredulous.

“He said the woman asked what his name was to put on the cup and he told her it was David!

David is not Son2’s name. Not even one of them. Not even close. Son2 approached with his drink and I asked him why he’d said that it was.

He shrugged. “I panicked!” he said. I understood immediately, for, dear reader, the apple doesn’t fall far from the tree.

We headed back to the car but it soon became apparent that Son2 was not enjoying his choice of beverage, a Vanilla Spice Latte. He passed it to Son1 who asked him why he’d chosen it.

Son2 grinned. “I panicked…”

Skiing, Steam Punk and a view to the future

Happy New Year and I hope you all had a great Christmas without too much stress!

Ours was relatively quiet, with both Son1 and Son2 away skiing with their special school in the run up to the big day. We were more than half-expecting to have to fly out to Italy to collect Son2 after a few days and, indeed, he did Skype me gloomily after the first day, reporting that he didn’t like skiing and couldn’t stand up, his joints hurt and he felt faint. Sure enough, that evening, the phone rang. It was one of the party leaders assuring us that he was fine, and they would be trying their best to persuade him back onto the nursery slope the next day.

We held our breath until we heard back from Son2 the next evening. And what a change! Thanks to the experience and knowledge they have of him and their patience with reluctant participants, he had got the hang of it and was, he said, “Almost ready for the slopes”. By the end of the trip he was, “Better than Mr Faasen”, the school’s 12 foot rugby-playing PE teacher, whose care of Son2 last year made a huge difference to him. (more…)

My pick of parents’ guest posts on Special Needs Jungle this year

SNJ-logo smallIn the last year I’ve been lucky enough to have had many parents write about their families and the issues they face raising children with special needs. These woman have a lot to share from their experiences that can help others in a similar position and so, as the year nears an end, I’d like to showcase them here in case you missed them when they first appeared during 2012.

Charlotte’s amazing brain – a heartfelt story about childhood stroke

Charlotte Neve was just seven when disaster struck. Her mother, Leila, has had to face the ultimate horror for any parent and even now, Charlotte has a significant brain injury as a result of her stroke that they are facing with the same determination as they did in their early, dark days when even survival wasn’t assured.

Read More

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

Hayley was recently invited to address a group of SENCos as the neared the end of their three year Masters’ degree course. Their tutor hoped Hayley’s experience could provide the missing ingredient to the course – that of the parents’ perspective.

Read More

When the words move by themselves – it could be Visual Stress

I met a lady on Twitter a while back, Michelle Doyle, who was talking about ‘Visual Stress’. I wasn’t really clear about what this was so Michelle has kindly written about it for Special Needs Jungle about how it affects her son and her fight to get him the support he needs.

Read her story:

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

Read more

Helping your special needs child – a mother’s story

A mum called Tanya contacted me the  other day and asked to share her story about her journey to support her disabled son with everyone, which I am only too delighted to do. Tanya has some extremely useful suggestions so I urge you to read it. Please leave your comments in the comments section so she can see them.

Read more

Empowering parents is the goal for Pat

Pat Bolton is a parent of a young person with special needs who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat helps parents to get the support their children need.

Read More

Resilient Parenting – A Guest post by Lesley McCall, NLP & Hypnotherapy Practitioner

Lesley McCall is an NLP practitioner and Hypnotherapist and has a child with SEN. She is experienced in helping people with parenting issues and with children who have special needs. She has some advice on how you can stay strong as you raise your children.

Read more

What now for Asperger’s?

There’s been a lot of talk about the re-classification of Asperger’s Syndrome in the new US DSM-V Manual of Mental Disorders – in other words it’s bee ‘abolished’ in its own right and brought under the category of Autism Spectrum Disorder.

What does this really mean? Specifically, what does this mean for people in the UK? Below is an article from NHS Choices that sets it all out sensibly.

***

dsmvboyAsperger’s syndrome dropped from psychiatrists’ handbook’, is the headline in The Guardian. The news is based on a press release from the American Psychiatric Association (APA) announcing the approval by their Board of Trustees of a revised fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The DSM was first published in 1952 and is often referred to as the ‘psychiatrists’ bible’ in the US.

The DSM is essentially designed to be a ‘user manual to diagnose mental illness’ – providing US psychiatrists with clear definitions of what pattern of symptoms correspond to specific conditions. This fifth revision, which has been a controversial issue of ongoing debate among psychiatrists and medical ethicists, is due out in May 2013.

One (amongst many) of the controversial decisions taken by the panel, made up of over 1,500 mental health experts, involved in drawing up the new draft guidelines, is to remove Asperger’s syndrome as a separate diagnosis and replace it within the term ‘autism spectrum disorder’.

In the terminology of the DSM-5 – Asperger’s syndrome would be seen as being at the ‘upper end’ of the autistic spectrum disorder (ASD). That means people with this type of ASD would normally have unaffected intelligence and language development, but would have milder symptoms affecting social interaction, behaviour and language comprehension.

message about DSM-5 written by the president of the APA (PDF, 105Kb), Dr Dilip Jeste, touches on the complexities and challenges of revising an established diagnostic system, as reported in the media. These include conflicting views among experts and the under-diagnosis and over-diagnosis of patients.

Dr Jeste also says that narrowing diagnostic criteria is often blamed for excluding some patients from insurance coverage in the US, yet efforts to diagnose more patients are sometimes criticised for expanding the market for the pharmaceutical industry.

The chair of the taskforce responsible for overseeing the DSM-5 revisions, Dr David Kupfer, said: ‘Our work has been aimed at more accurately defining mental disorders that have a real impact on people’s lives, not expanding the scope of psychiatry’.

How much of an impact will the DSM-5 have on care in the UK?

Despite the media hype, the revised classifications in DSM-5 will have limited impact on individuals who receive mental health care in the UK, at least in the short-term.

Psychiatrists in the UK tend to use the World Health Organisation’s International Classification of Diseases (ICD) system to diagnose mental health conditions, rather than DSM, which is used in the US.

Also, the term ‘autistic spectrum disorder’ (and the concepts underpinning it) have been widely used in the UK for many years. However, in the long-term, it is difficult to predict the potential impact the DSM-5 will have on the future diagnosis and treatment of mental health conditions.

Earlier versions of the DSM have had considerable influence, both in the US and across the world, in shaping opinions and driving research agendas. For example, it was the publication of the previous version (DSM-4) in 1994 that helped ‘popularise’attention deficit hyperactivity disorder.

What is the DSM-5?

The DSM-5 (the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders) is produced by the American Psychiatric Association (APA) and is the diagnostic manual used by US clinicians and researchers to diagnose and classify mental disorders. The Diagnostic and Statistical Manual (DSM), first published in 1952, has undergone several revisions to take into account progress in medical and scientific knowledge and an advanced understanding of mental illnesses.

The DSM-5 is set for publication in May 2013 and will be a revision of the DSM-4 that was produced nearly 20 years ago.

According to a message from APA President, Dr Jeste, the DSM-5 reflects the best scientific understanding of psychiatric disorders and will optimally serve clinical and public health needs. Dr Jeste says ‘the hope is that the DSM-5 will lead to more accurate diagnoses, better access to mental health services, and improved patient outcomes.’

The DSM is broadly based on the classification system published by the World Health Organization (WHO), called the International Classification of Diseases (ICD).

The ICD system is used by the UK and other members of the WHO. It allows doctors to look at clusters of symptoms to form diagnoses for all health-related conditions, including mental health conditions.

The current version is ICD-10, and it is ICD-10, rather than DSM, that psychiatrists in the UK predominantly use to diagnose mental health conditions.

Is Asperger’s syndrome no longer being considered a mental illness?

Autism and Asperger’s syndrome are both part of a range of related developmental disorders, which are characterised by:

  • a person having problems with social interactions with others
  • difficulty communicating with others
  • the person tends to have a restricted, repetitive collection of interests and activities or rigid routines or rituals

The main difference between autism and Asperger’s is that people with ‘classic autism’ tend to have some degree of intellectual impairment. According to the press release, several categories from DSM-4 (including Asperger’s syndrome) will be replaced by a single diagnostic category of autism spectrum disorders in DSM-5. The following disorders will be incorporated under the diagnosis of autism spectrum disorders:

  • autistic disorder
  • Asperger’s syndrome
  • childhood disintegrative disorder
  • pervasive developmental disorder (not otherwise specified)

The press release says that this is to help more accurately and consistently diagnose people with autism. This does not mean that Asperger’s syndrome is being removed from the DSM classification system, only that it is being placed under a single diagnostic category.

Under ICD-10, both autism and Asperger’s syndrome are classed under what are known as ‘pervasive developmental disorders’ – pervasive meaning that the characteristic features of these conditions (for example, social interaction and communication problems) are a feature of the person’s functioning in all life situations.

What new mental illnesses does the DSM-5 list?

According to the press release, the DSM-5 will include approximately the same number of disorders that were included in the DSM-4.

Additional mental disorders set to be included in the DSM-5 are:

  • disruptive mood dysregulation disorder – which is intended to address concerns about potential over diagnoses and overtreatment of bipolar disorder in children
  • excoriation (skin picking) disorder – which will be included in the obsessive-compulsive and related disorders section
  • hoarding disorder – which is said to be supported by extensive scientific research on this disorder and included to help characterise people with persistent difficulty discarding or parting with possessions regardless of their actual value

What other changes are included?

The revised manual (DSM-5) will include a section on conditions that require further research before their consideration as formal disorders. This section will include:

  • attenuated psychosis syndrome – where people have psychotic-like symptoms (such as hearing voices), but not full-blown psychosis (unable to tell the difference between reality and their imagination)
  • internet use gaming disorder – essentially, an online gaming addiction
  • non-suicidal self-injury – self-harming behaviour, but not with the intent of ending life
  • suicidal behavioural disorder – a type of personality disorder that increases the risk of a person taking their own life

Disorders that will not be included in the revised manual (DSM-5) include:

  • anxious depression – a term proposed to describe mild to moderate symptoms of anxiety and depression
  • hypersexual disorder – so called ‘sex addiction’. For more information see our October 2012 analysis “Media claims ‘sex addiction is real“.
  • parental alienation syndrome – a term proposed to describe a child who ‘on an ongoing basis, belittles and insults one parent without justification’
  • sensory processing disorder – a term proposed to describe people who have difficulties processing sensory information (for example, visual information or sounds)

Other changes to the DSM-5 reported in the press release include:

  • a broadening of the criteria for specific learning disorders
  • a new chapter on post-traumatic stress disorder that will include information for children and adolescents
  • removal of certain bereavement exclusion criteria – making clearer the difference between natural feelings of grief and mental illness.

Does any of this affect me?

Until the publication of the DSM-5 in May 2013, there will be no changes to diagnoses of mental disorders. Importantly, the DSM-5 is a US publication, so its main impact will be in the US where clinicians use the DSM-5 to diagnose mental disorders.

Clinicians in the UK predominantly use the ICD-10 system to diagnose mental disorders, while the DSM classification system is mostly used for research purposes.

As mentioned, in the long-term, the new version of the DSM may have long-term healthcare, as well as cultural and political, implications that are impossible to predict.

Analysis by Bazian. Edited by NHS Choices. Follow Behind the Headlines on twitter.

Links to the headlines

Asperger’s syndrome dropped from psychiatrists’ handbook the DSM. The Guardian, December 2 2012

Fears for Asperger’s families over quality of care as disorder is dropped from ‘psychiatrists’ bible’. Daily Mail, December 2 2012

Further reading

American Psychiatric Association. American Psychiatric Association Board of Trustees Approves DSM-5 (PDF, 155Kb) (Press Release). Published online December 1 2012

Son1 is 15 today-and proof that the right support can work miracles

Today is the International Day for Persons With Disabilities, which will be marked worldwide. It’s also Son1’s 15th birthday and I would like, today, to offer a message of hope for parents of children with behavioural problems and Asperger’s who are worrying what the future may hold for their children.

Son1 - All rights reserved

Aged 7

When Son1 started school, we already knew that it was not going to be an easy ride. Fiercely intelligent and sporty with a bright blonde mop of hair, we still hoped for the best. At pre-school, the undertrained staff had already shaken their heads at his unwillingness to go along with everyone else. If he couldn’t have the colour cup he wanted, he would rather not have the drink. He would tear around, regardless of who was around him.

Within the first few terms of reception, he had a behavioural chart. He couldn’t bear to be anything but first in the queue and if something went wrong, he would sit under the table and refuse to move. He found it impossible to see others’ point of view; on outings he was a danger to himself. Making and keeping friends was another issue. Needless to say, this all had an impact on his learning.

He loved football but would often sulk on the sidelines if he couldn’t play where he wanted. At home he would have rages, was often uncontrollable and nothing we did seemed to make any difference.

Needless to say, we were drained, stressed and desperate to help him. I even helped in school twice a week to make sure I knew what was going on there. My husband became a team football coach – something he still does – to support him.

So, lacking any useful help or advice from school, I got wise, did my research, got a referral to a paediatrician and discovered what the problem was – Asperger’s with Hyperactivity. I worked really hard to get him the statement he needed to support his social and emotional needs. We tried and discounted medication; we tried a different diet. This was against a backdrop of having a younger son with medical, social and educational needs for whom we also had to find a solution.

And find it we did.

For the last five years, as you may know, both our boys have been at the most fantastic independent specialist school that is designed for bright boys who find it difficult to learn in a mainstream setting. They may have dyslexia, dyspraxia, increasingly Asperger’s or another learning difficulty. Schools like this are few and far between and, as far as I know, there is no comparable girls’ school. We even moved house to be closer for the daily school run.

Son1, now he has been getting the right education in the right environment, is growing into an independent, clever, thoughtful young man. He has a love of, and a talent for music. He has a sense of humour. He still has his impulsiveness and stubbornness but he listens to reason – as long as you don’t ram it down his throat. Best of all, he has friends.

Some of this is down to growing up in a stable home with a family who work hard to make sure that he has what he needs – which is not always the same as what he wants. But mostly it’s the intensive input and care from the experts in the Learning and Development Centre at school

Son2 winning Chairman's Player of the Year for 2012

Son2 winning Chairman’s Player of the Year for 2012

I’m telling you this because I know very well that there are parents reading with younger children who are still at the ‘before’ stage. Who may be wondering where to turn, who can help them or if their child will ever have the kind of life they had envisaged for them. They will have faced disapproving looks from parents at the school gates and from teachers who are not trained in either recognising or supporting this type of child.

On this Day of Disabilities, I also think of those children with such severe difficulties that they may never reach adulthood, or who will be dependent on their parents or on medical care for as long as they are alive. And I realise that we are lucky. Our younger son does have medical difficulties that we have been struggling to get to grips with and this is hard, with an uncertain future, but we have experience enough now to know that we will cope.

This is not to say that some have it worse so you can’t feel bad – no one can tell you how to feel and when we see our children suffering it is devastating, whatever their condition.

But for boys like Son1, there is a solution. It takes lots of work, determination, strength and persistence – for them, you and their school. As further proof, this year at his football club, he won the Chairman’s Player of the Year Award. He played in goal for two seasons to benefit the club, even though he prefers being a striker.

My message to you is do not give up. Keep looking until you find the right solution. Get educated, get help – for your child and for yourself – but above all, believe that the future will be better.

Can you help with Pathological Demand Avoidance Research?

I was checking the most frequently used search terms that brought people to my site the other day and one of the top ones was “Pathological Demand Avoidance”
I ran an article a while ago by Deborah Rourke about PDA and it still continues to be very well visited, so I know that this is an important issue for many parents who are seeking information about the condition, which is very under-recognised.
I would now like to introduce you to a mum who would like your help as she researched Pathological Demand Avoidance for her dissertation. Hannah Reynolds has a very personal reason for choosing the subject.
** Please see update at bottom**
***

Hannah Reynolds

Hi, my name is Hannah Reynolds and I am stuying for a MSc in Forensic Psychology at the University of Portsmouth. I am also mum to two daughters, one of whom I suspect may have Pathological Demand Avoidance Syndrome. I’m fascinated by this condition and, particularly, why some children with PDA behave very differently depending on the environment they are in – between home and school, for example (like my daughter!).

For my dissertation, I will be conducting research into this particular feature of PDA  and am currently looking for people who would like to participate in my study once it is up and running (next year).
So, if your child – with OR without an official PDA diagnosis – shows this difference in behaviour between environments, please send an email to hannah.reynolds@myport.ac.uk and I will add you to a database of participants.
I want to make this as informative a piece of research as possible so please, if this description fits you (or anyone else you know), get in touch!
Many thanks
Hannah 🙂
** Update from Hannah January 2012***
It has been necessary for me to tweak my project proposal (this is common in the early planning stages) and, though I will still be researching PDA, I will be conducting a more in-depth, qualitative study into parents’ and teachers’ experiences of a child with this syndrome. In a couple of months, I will post an update on this website (thank you very much, Tania!) to advertise for participants so please check back for this.
I am very grateful to those parents who have already emailed me and I would like to hold on to all details for any future research I might carry out in this field. Please let me know if you would like your name removed. To any parents who would like to be considered for further research on PDA, please email me – hannah.reynolds@myport.ac.uk – and I will add your name to my database.
Many thanks for your time and don’t forget to keep checking for updates!

How NOT to prepare for the autistic child’s camping trip

Son2 is off, after school, on a camping trip with his Year 8 cohort. They will set off to walk to a nearby campsite, pitch tents, eat BBQ, camp overnight and return to school sometime the next day. Sounds fun, you might think, and I do hope it is, because this morning has been a faffing nightmare getting him ready.

The TentSon2 has just started some medication that is already making him feel much less anxious so when he wanted to go to the cinema last night with his brother and cousins who are visiting from New Zealand, it would have been unfair to make him stay and pack his bag. So off he went and we did it for him.

Tent, check, sleeping bag, check, bed roll, check. Two spare sets of clothing, cleverly grouped into outfits and packed in separate plastic bags so he doesn’t have to root around in his rucksack, check. Everything on the kit list was ticked off and my husband and I thought we’d done a pretty marvellous job.

Son2 arrives home late, heads for the shower and tumbles into bed.

This morning, he says, “Did you pack my rucksack? I wanted to do it. What have you put in?” Son2 is notoriously fussy about his clothes and shoes. Husband and I exchange uneasy glances.

Out comes everything from the rucksack and Son2 is, of course, unhappy with our choices. Then he decides his shoes are too small and he most definitely does not want the trainers we have packed for him. I grab Son1’s walking boots, which are most probably too large but Son2 tries them on and decides they’ll be fine to take. So we pack them in a plastic bag and I leave husband to repack the rucksack that now contains completely different sets of colour-coordinated clothing.

Into the car goes his wheeled schoolbag for today, rucksack and daypack. He had already sorted out the daypack before he went to the cinema, containing the important stuff – Haribos, guava juice and a self-heating can of rocket coffee. Then I remember – he needs to pack his medication and I should have given it to the nurse days ago. Bugger! She’s not going to be happy.

It is now 0820 and we live five miles from school, which starts at 0830.

Off we set, only for the hands-free phone to ring minutes later. It’s husband. “Doesn’t he need these walking boots?” he asks. Double bugger! We pull into the Tesco Express car park to await husband with the missing boots. My teeth are grinding and I’m feeling uncomfortably clammy. The boys are sitting with their headphones on in their own worlds.

Husband arrives and, boots onboard, we screech out of the car park and head for school, now unavoidably late as we fight through the Farnham town centre traffic. “Are you sure you can’t stay for a club or prep so I can have more time to work?” I ask Son1, hopefully. “No,” is his uncompromising reply. I sigh and turn up Norah Jones singing about how her heart is drenched in wine. I wish mine was too.

Eventually arriving, I drive across the  campus to the sports hall to deliver the bags and tent, only to come face-to-face with the off-duty nurse who also has a son in Year 8. I mention the missing medication and wince as she tell me how they were at school until seven last night, securely packaging everyone else’s who’d got it there at the allotted time. But, as she is a nice person, she graciously tells me it won’t be a problem, but I still feel like the most disorganised mother on the planet.

Son2 trundles happily, through the drizzle, off to form, because of course, no camping trip is complete without rain. I fight back through the traffic to my home office to bring you this sorry tale of woe. Still, the sons are happy, and that’s the main thing. Isn’t it?

I’m having a spot of surgery in a week’s time. I am strangely looking forward to the general anaesthetic.

Place2Be – the charity that makes a lifetime of difference to children in schools

A while ago, I came across a great charity, working across the country to improve the emotional well-being of children, their families and the whole school community. The Place2Be was established in 1994 in response to increasing concern about the extent and depth of emotional and behavioural difficulties displayed in classrooms and playgrounds.

Today, Jonathan Wood, Place2Be  National Manager, Scotland, tells Special Needs Jungle about their work and why it is so vitally important:

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Why school-based counselling support works: Place2Be

You are a busy classroom teacher, juggling the demands of a young family at home with a boisterous class of 8 year olds at school. Your class takes a lot of energy to settle down for work each morning – and at each subsequent break throughout the day.

It’s Monday morning and Amy is in tears again, even before the bell has gone. Recently fostered after a placement with her grandparents ended violently, you have to remind yourself that it is only a year since Amy’s mother died from a drugs overdose. If you didn’t, your exasperation might seep out as you comfort her just enough to get her into class.

Once in there, disorder rules. At the heart of it, two boys are baiting each other. One of them, Sam, is not going to back down. You suspect he is somewhere on the autistic spectrum, as yet undiagnosed – that mix of over-sensitivity and bullishness – and his feelings have been hurt. And Amy’s crying again.

The other children have responded to your presence and start to settle down. So that just leaves Sam and Amy and you to deal with.

How do teaching staff cope with extra-curricular demands of this nature? Who offers them support to ride the emotional roller-coaster that whizzes and plummets through the school curriculum on bad and not-so-bad days?

In Place2Be’s experience, most teachers cope by simply carrying on. Support for the emotional impact of children like Sam and Amy can be hard to come by.

Founded in 1994, Place2Be provides a whole-school service, offering therapeutic and emotional support to children and parents, and on-site consultancy formally and informally to teaching staff. We work with 500 schools across the UK. How would we respond in this situation?

We might expect to meet up with this teacher at break or lunchtime and talk through with her how her morning went. We may suggest strategies for her to support Sam, including that he come and see us in Place2Talk, our drop-in, solution-focused self-referral sessions for children (10 minute sessions at break time). We may bring forward Amy’s session with her Place2Be counsellor, recognising that she is not coping well at the moment. We may simply listen to the teacher.

And indeed, Sam did come to the Place2Talk and together we worked out painstakingly and rationally how he might take control of similar situations and not rise to anyone’s bait. And over the next few weeks, Amy played intensively with the doll’s house in the Place2Be room, in which she installed dolls representing herself, her mum and her grandparents. There were fights and tears, but it wasn’t until a new set of parents moved into a room in the house that Amy’s mum and grandparents could move out, leaving her there. Amy’s foster parents have since applied to adopt Amy, and the tears before class have stopped.

Teachers know that some children arrive at school not ready to learn. But knowing that is not the same as having the time, the resources or even the skills to manage all the issues that children can bring.  This is where a service like Place2Be can make the difference by attempting to provide that responsive space for schools at every level in a direct and non-stigmatising way.

Find Place2Be here

Inspired: Son2 meets Dr Temple Grandin.

Last night we had the privilege of going to see Dr Temple Grandin, the autistic woman famous for inventing humane animal handling systems. Dr Grandin is also a renowned expert on autism and Son2 was very keen to hear her speak.

So off we went to Reading, but by the time we had arrived and found the Town Hall, Son2 had become overloaded, fallen into intractable silence and could not be persuaded to eat or drink anything. This was not looking good and I wondered if we should just go home. But I had only booked because he had wanted to go and I knew hearing Dr Grandin would be important for him.

Dr Temple Grandin & Son2

Dr Temple Grandin & Son2

There was a while to wait before the show started and I offered Son2 some cash to see if he wanted to get anything in the cafe. Off he set, with me trailing behing him. His eyes alighted outside the auditorium on Dr Grandin signing books. He said nothing and we went down to the cafe where he could find nothing to his liking. Back we came and he slowed down at the book buying table. I asked him if he would like a book and to get it signed. He would.

The queue had diminished and we got the last book. Son2 met Dr Grandin for a brief moment as she signed his name and hers and he went back to his seat clutching his signed copy. He managed a small drink and a bite of his sandwich. I knew that as soon as she started talking he would be transfixed and so he was, for a full hour.

Dr Grandin spoke about how important it was to engage young people with autism, for them to participate through common, shared interests and how to teach them bottom up, not top down. By this she meant using specific examples to teach concepts, to teach the child according to the way he learns. She said it was also particularly important to discover the root cause of a child’s problems, whether it was biological, sensory, fear/anxiety or a hidden medical problem. It was important to give an instruction for the type of behaviour you want, rather than a negative instruction.

Dr Grandin said that much more research needed to be done into sensory issues, which Son2, in particular, is very sensitive to. She also pointed to how so many young people with autism were without basic skills and how fifties-style parenting, emphasising behavioural expectations by way of routine, benefitted young people with an ASD.

Her advice to teenagers with ASDs was that if you find it difficult to interact with people socially, then impress them with what you can do – build up a portfolio of the things you are good at and play to your strengths because talent gets respect. In this way, you can find a place for yourself in society.

Dr Grandin has a new book out, the same one that Son2 has today taken to school. It’s called Different… Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger’s, and ADHD.

We didn’t stay for the Question and Answer session after the break – Son2’s attention was exhausted and so was he. But he took a lot from it, I could tell. Dr Grandin is very similar in her thought processes to him and I believe he was inspired and comforted to realise that so many people had come to listen to someone just like him.

Before we left, I asked him if he’d like his picture taken with Dr Grandin – because I knew he would. I explained to Dr Grandin that Son2 now needed to go home but he would really love his picture with her. “We’d better do it right now, then!” she said and Son2 quickly went to stand at her side. It’s not a great quality image, but I know it’s one Son2 will treasure.

On the way home, he was ready to eat his sandwich and have a proper drink. It hadn’t been an easy trip, but I know that he was satisfied and that’s enough for me.

SEN child? Join me and NAS president, Jane Asher, on Sat 16 June

So, it’s just a couple of days before the Towards a Positive Future Special Educational Needs conference in Newbury – if you can make it at all, it’ll be well worth the trip.

My presentation is all written and it includes some up to date information on the pathfinder trials for the SEN Green Paper for Surrey. What I’ve found is that those commentators outside the pathfinder really know little about what is actually happening within the workstreams.

Tomorrow, I’m off to a couple of meetings for the Surrey pathfinder, including the latest for the Education, Health & Care plan. We’ll be reviewing a draft plan drawn up by the pathfinder lead, Susie Campbell who has collated lots of feedback from a previous meeting – quite an undertaking and I’m looking forward to seeing what she’s come up with. Our feedback from Family Voice Surrey parent-carer forum was quite comprehensive.

Saturday’s conference still has a few paces left and they can be boked online at http://www.wordswell.co.uk/tapf-conference-2012/booking.php

Among the keynote speakers are:

Clive Rawlings – Barrister – The Coalition Plan for Special Educational Needs: Cohesion or Corrosion?

Charlie Mead – Educational Psychologist – The Careless System

Martyn Sibley – Social Entrepreneur who has one aim ‘To Change the World for Disabled People’

Jane Asher – Actress and President of the National Autistic Society

Delegates can also choose from a range of seminars including OT- Equipping young people with SEN and parents for Life After School; Differentiation in the classroom for children with autism; SLT – the SCAEP multi-sensory social communication skills programme;  Getting Good Social Work Services; Implications of the Green Paper for Children with Dyslexia and Developing Communication Skills for Pupils with Down’s Syndrome.

I’m really looking forward to meeting Debs Aspland, the chair of Kent parent-carer forum, who’s delivering a presentation drawn from her experience as parent of a child with a diagnosis. We’ve built up a friendship via twitter and Facebook and narrowly missed meeting at the Labour SEN policy review meeting a few months ago. Social media is fab for making connections like this, especially as a parent of children with special needs, which can be socially isolating.

So, really hope to see you there if you can make it. And if you do, don’t be shy and make sure you come up and say hello!

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

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From day one, my son suffered from a bloating and stomach pains, which meant for the first two years of his life he only cat napped for a couple of hours at a time; this extreme tiredness felt like torture. When he was almost 10 months old, a doctor suspected he might have Hirschsprung’s diseasewhich led to him under-going a bowel biopsy and a barium x-ray, results of which thankfully were both negative, but the experience had taken its toll and left him suffering further distress.

He was referred to a dietician when he was 26 months old who suggested I put him on a wheat free, gluten free diet. Less wheat did help a little with the bloating; after a while I put him back on a normal diet reducing his wheat intake. My son had terrible outbursts due to frustration and confusion, head banging on floor, biting, hitting, grabbing and hurling anything he could reach.

His speech was poor; by 19 months he had four words and by 24 months it had increased to around eight. His hearing tests were all good. He used to point for things he wanted, or led me by the hand. His speech started to improve slowly from the age of three. He also had difficulties with his gross motor skills (balance, stepping over objects, hoping, running), an occupational assessment put this down to poor gross motor skills and a stiff gait in his left leg. Mother and toddler groups were a nightmare due to his aggression – he was like a whirlwind of destruction which, of course, resulted in complaints from other parents. This continued on into nursery, where he was put on School Action Plus.

Home life became difficult, in so many ways. His sister, four years older, struggled with the constant crying and meltdowns from her brother, other family members struggled to understand and put his behaviour down to terrible 2,3,4’s, some friends stopped seeing us as they didn’t want him playing with their children due to his aggression. Hairline cracks within my marriage grew into a canyon and I struggled to know what to do for the best.

My son was initially diagnosed with speech and language delay. He first attended a mainstream school with a speech and language unit attached, after only one week he had been permanently excluded on grounds of health and safety the other children. Another smaller mainstream school offered to take him, they even helped to get his statement of needs relooked at, and he was given a full-time one to one teaching assistant. However, after almost four weeks and several incidences, the school admitted they were also unable to cope.

Another doctor assessed my son, she recognised that he had autistic tendencies combined with speech disorder. His statement was adjusted to better meet his needs and then began the search for another school. During that time he remained at home.

So many times I was told, “Your son’s not autistic he gives eye contact”. Other times I was asked, “Does that mean your son is really intelligent?” But more difficult to hear was, “He’s just strong willed, a good smack on the bottom will sort him” A local special needs school was found, actually it was a unit attached to an EBD (emotional behaviour disorder) school. With only five children in the class, one teacher and two assistants, I hoped things would work out for him, it certainly looked that way to begin with.

Then the calls started… “Um, it’s your son’s school here, he’s not having a good day; can you come and get him?” This went on and on, not only was this very negative and disruptive for my son, I repeatedly had to take more time off work. I also saw an increase in his meltdowns, and unfortunately the copying from other boys of inappropriate words (such a the F word). A new term, with new staff, resulted in an incident and once again he was excluded.

After an emergency review meeting, which raised areas of failings by the school, we were back to square one. After three separate school exclusions from three different types of schools, I had to give up my job for a third time. He remained at home for eight months whilst being rejected by many schools. The autistic specific schools we viewed didn’t seem suitable, as his autism was mild. Other schools turned him down because he was unable to access the curriculum, and many schools rejected him because of his aggression.

After a CAMHS report, a Meath School private disability assessment, a battle with the County Council SEN department regarding their failings, an Ombudsman investigation, a newspaper article, some campaigns involving letters to my local MP, amongst others, eventually a new school was found, but is ‘out of county’.

Where are we today now that my son is nine years old?… My son has a condition called Pathological Demand Avoidance Syndrome, which is increasingly recognised as part of the autistic spectrum. He is mentally five years old, with Speech Language Communication Disorder and Dyslexic. He is still unable to access the curriculum, struggles to comprehend simple requests, has no concept of time, suffers from IBS and struggles to understand social play.

He currently goes to a special needs boy’s school who have some experience with ASD, EBD, ADHD, ODD etc. But more importantly, they have a flexible manner with an open-minded approach in a nurturing, calm and inclusive environment. To-date, both my son and his school teachers/carers are coping well and learning from each other every day. But it isn’t plain sailing, as his school is in another county and because it’s almost an hours drive away.

There were problems with travelling back and forth daily, so he is currently weekly boarding at the school, the same as the majority of the other boys. There has been much heartache for me, letting go and trusting in others to care for and understand my beautiful boy, although it now helps being able to telephone him every evening. I also worry about the possible increase in his anxiety levels due to separation from the family.

There certainly have been some positives, my daughter is calmer and happier and we have respite time together during the week and it has been lovely to be able to focus 100% on her for the first time in years. Although the children’s father and I have separated, we remain living near each other, have become good friends and he has a wonderful relationship with his children and is fully involved in their lives. We both feel that our son has given us the opportunity to look at life with huge appreciation for the things that many people take for granted.

Our son has been our teacher, we have learned the art of patience, acceptance, to be open-minded, to look closely at ourselves and how to interact in a new way with both our children. My son helped me to realise who I am and what I am capable of; he gave me my voice, he helped me find my inner spirit, strength and passion, and has made me a better person. I am a strong advocate for autism and am in relentless pursuit to raise awareness about PDA.

What can PDA look like…

  • Panic attacks /challenging behaviour:  

Aggressive outbursts, kicking, biting, spitting, hitting, swearing, screaming, throwing things (fight or flight, often with no obvious triggers)

  • Communication abnormalities:  

Echolalic speech, literal understanding of speech, neologisms (using idiosyncratic words instead of conventional speech), language disorder to varying degrees, inappropriate speech for social context

  • Social communication:

Inappropriate play, lack of turn taking and difficulty understanding social rules and requests, difficulties knowing how to react to another person’s behaviour, difficulties accepting that there may be other perspectives, not just a single perspective, limited gesturing

  • Rigid thinking
  • Accumulative levels of stress
  • High anxiety and low self esteem
  • Sensory issues / overstimulation, materials, noise, sunlight, temperature, food

Early History of PDA Elizabeth Newson first began to look at PDA as a specific syndrome in the 1980′s when certain children referred to the Child Development Clinic at Nottingham University appeared to display and share many of the same characteristics. These children had often been referred because they seemed to show many autistic traits but were not typical in their presentation like those with classical autism or Asperger Syndrome because of the child’s imaginative ability, especially in non-echolalic role play; often the child seemed unusually sociable, though in an “odd” way, and language development was atypical of autism and less pragmatically disordered than in Asperger’s syndrome. They had often been labelled as ‘Atypical Autism‘ or Pervasive Developmental Disorder – Not Otherwise Specified. Both of these terms were felt by parents to be unhelpful. She wrote up her findings in several papers based on increasingly larger groups of children. This culminated in a proposal for PDA being recognised as a separate syndrome within the Pervasive Developmental Disorders in 2003 published in the Archives of Diseases in Childhood.

http://www.pdacontact.org.uk/ | http://www.facebook.com/groups/7165353156/  | http://adc.bmj.com/content/88/7/595.full | http://advocate4pda.wordpress.com/2012/02/05/wikipedia-for-pda/  | http://www.youtube.com/watch?v=QwtkzBoY01M

Above is a photo of my wonderful son, and below, a photo taken at the National Autistic Society Spectrum Ball, where Tony Hadley (Spandau Ballet) kindly agreed to have pictures taken to help raise awareness for children with Pathological Demand Avoidance Syndrome.

Helping your special needs child – a mother’s story

A mum called Tanya contacted me the  other day and asked to share her story about her journey to support her disabled son with everyone, which I am only too delighted to do. Here it is below and Tanya has some extremely useful suggestions so I urge you to read it. Please leave your comments in the comments section so she can see them.

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Hi everyone.

I am mother to a ten year old boy who was born with multiple birth defects. He required many surgeries and as a result was left with severe separation anxieties. When he started pre-school I had to attend with him and couldn’t even leave the room. He could not attend school for more than 2 hours a day during his reception year because of his anxieties, medical problems and mainly because this school was less than empathetic to his and indeed, our whole family needs. Although they were classed as ‘outstanding’ in their OFSTED report, they never listened. They only told and kept referring to themselves as “experts”, a term we all as parents hate.

I moved within the year and made sure I placed my son in a school where the headteacher was very empathetic. She listened attentively to my concerns and requests – I knew this was the right school for him and although I applied for a Statement as I felt and the school felt this would be needed, he managed to settle in straight away with very little problems although he was placed back into reception again (a year behind his age) and was placed on School Action Plus.

I gained employment at this school as a Teaching Assistant and worked with an Autistic boy for the three years he was in this school before transferring to Junior School.

I have been able to use my knowledge and feelings as a parent to help in my work with this boy. I have also witnessed how communication plays a huge part between schools and parents – I see how things can be improved, I see how schools can be too judgemental on parents without knowing the full facts and seeing the full family picture. I also see where parents can be too demanding on schools without knowing all the facts.

In the course of my work I attended courses. I found out about the Autism Toolbox. This is a valuable resource. I never knew this existed however, ALL schools have it [SNJ note: all schools in Scotland, this is a resource developed for Scottish schools]. It gives examples of language jigs and social stories. These can be used for anything i.e, trips out shopping, going to bed, playing with friends, school trip out, school photographs etc. PLEASE, PLEASE, if you are a parent of not only an autistic child but a child who has any kind of anxieties, communication difficulties, behavioural difficulties, ask your school if you can borrow this resource to help you with routines at home and also make sure they are using this resource in school for your child. The Autistic toolbox can also be downloaded from many LEAs websites under the special needs section. If I had known about this valuable resource I could have used it to help my son and am sure that it would have saved a whole lot of family frustrations.

When looking for schools it is important to use your ‘gut instinct’ as a parent. My son’s first school did little to help him, even though as I said, they were rated as ‘outstanding’ in their OFSTED report. His new school however was rated as ‘satisfactory’ but they listened and helped him progress. It is also important as a parent that you not only get to meet the teacher but more importantly your child’s keyworker or teaching assistant, as it is this person who will have the most ‘hands on’ time with your child.

Talk to them about how you feel, tell them what is important to you, be sincere. Most of us find it easier to be honest and tell medical people the difficulties we are experiencing at home but when it comes to schools we feel less able to tell them about our struggles. A good school will not judge you if you are honest about what you are having difficulties with. Suggest home/school diaries where the teaching assistant will record what went well and what was difficult in the school day. Then the parent can record what went well, was difficult at home – home and school working together where the child gets rewarded at home for what went well during school and the child gets rewarded at school for what went well at home.

The difficulties can also be addressed. Ask for the TA to make up social stories – examples of these can be found on the internet. These can then go home and be read as a night time story – they can tell stories about how your child can ask to play with children at playtime, problem solving, when things change, etc. The pictures from these stories can then be minimized and used by the TA as visual reminders that can be shown to your child when playtime begins etc.

Find out whether your child has support at playtime; in lots of schools the teachers, TAs have their break when the children are out playing. This is when your child needs the most help! Other teachers and TAs on duty in the playground may not fully be aware of your child’s difficulties. Ask the school if you can go in and talk to all staff including teachers, teaching assistants, midday supervisors. It is important that everyone at school knows your child, their difficulties and how to help.

Schools have many resources which can help your child with their learning, homework. They also have special needs website addresses to help your child learn at home that can help with maths and also help develop fine motor skills. Just ask if you can borrow these resources or make a note of the website addresses.

If there is an important meeting at school about your child, ask the school to confirm the minutes of the meeting in writing. We as parents can only hold as much information as our emotions will let us. This often leads to us ‘making up’ the rest of the conversation without knowing it and jumping to false conclusions.

If your child has recently started school and you have been an ‘at home mum’ caring for your child, why not volunteer as a parent helper? If you enjoy this and a position becomes available at the school, ask to be considered. Don’t feel that you are unqualified for the job. You can have a teaching assistant with all the qualifications in the world who lacks the passion and enthusiasm required to really make a difference when working with a child and then there’s you – a parent who knows what it’s like, who will treat the child they work with as if they are your own, being able to relate to how their parents are feeling.

I am so glad I applied for a job as a teaching assistant – I always think of how I would want someone to work with my son when I am working with a child. How wonderful it is to have played a part in helping a child succeed knowing that you put your all into working with that child and neither you nor anyone else could have helped that child more.

I would really appreciate your comments as to whether you feel your school is supportive or unsupportive – Do they always plan ahead and have everything sorted out so you are not worried at all or do you feel you have to constantly approach them in order for things to move forward.

Many thanks to Tanya for sharing her experiences. If you’d like to share what you have learned about helping your child to help others, please email me  

Act now for a chance to learn more about SEN – for just £36 including lunch!

There are just four days left to secure the early bird price for this year’s Towards a Positive Future SEN conference in Newbury.

The conference takes place on June 16th and I’m honoured to be one of the keynote speakers,. NAS president Jane Asher will be leading a Q & A session and other speakers include special needs, legal, education and disability experts.

The conference is for anyone who lives or works with children and young people with SEN and disabilities. It’s a great opportunity to learn more about how to help your child or children you care for and to speak to other parents and experts.

There will be separate seminars dealing with dyslexia, autism and the implications of the green paper. See the full programme details here.

Early bird tickets are just £36 for parents – which considering most conferences are into the hundreds is an incredible deal. Early bird professional tickets are £72.

Book now to avoid disappointment. The event is at the Arlington Arts Centre in Newbury and parking is free. Lunch and refreshments are included.

The conference is sponsored by, among others, SEN Magazine and Pearson Assessment.

The conference organiser, Janet O’Keefe, said, “This conference will focus on what we know works and how this can continue to work whatever the future political or legal system we find ourselves under in the coming months and years. Our aim is that parents of children with special educational needs and the professionals that support them are as informed as possible about the Green Paper, forthcoming changes and future implications on health, education and social care funding so that they can navigate the system successfully.”

For online booking, click here

Managing the relationship between children with autism and computers

Adele Devine is a teacher at Freemantles School for young people with autism in Surrey. She, along with her husband, have created a range of award-winning software for special needs, SEN Assist. She’s writing here on the Special Needs Jungle blog about how to make sure that children with autism are getting real benefits from computer use. Don’t miss Adele’s, 10 Tips for developing a healthy relationship with IT, included in the article.

Technology is motivating for most children, but to those with autism it’s more. The computer can become a safe place – it’s predictable, it’s got every motivator on the planet, it’s a world behind a screen that can involve and include.

Once they find this safe haven is it any wonder that the child with autism wants to be there every minute of the day? They might seem to become manageable and happy rather than ‘bouncing between the walls’, but we must look at what they are actually achieving on the computer.

 Is the IT including or isolating, educating or babysitting?

Children with autism benefit from structure. If left to their own devices they might be on the computer all day and do nothing, but click between ‘youtube’ videos or sound files. So should we stop them? No, but we must to take control early on and structure their time. This way we will help them to develop a healthy relationship.

Temple Grandin (author and professor, herself autistic) believes that without “the gifts of autism” there would probably be no NASA or IT industry and most autism experts would agree. Bill Gates, founder of Microsoft (widely believed to have Asperger’s syndrome) demonstrates the possibilities if the computer ‘obsession’ is correctly managed.

There is also the ‘dark side’ of this relationship.

The computer can reduce social interaction, nurture obsessive behaviour or even misdirect skills towards illegal computer hacking. The ongoing case of hacker Gary Mckinnon, who faces possible extradition rings warning bells.

His mother Janis Sharpe says, “When Gary was nine, we bought a primitive Atari. He would beg me not to send him out to play so he could use it. We wanted him to mix more but we didn’t want to deny him the information, pleasure and security computers gave him. They were an outlet for him to be himself, and that boosted his self-esteem.” 

So what should we do?

Richard Mills, director of research at the charity Research Autism, believes the answer is complicated: “The computer age totally changes the world of autism. Things are instant, and they are unregulated. We see tremendous advantages to this if it is properly managed – and huge pitfalls if it isn’t.”

Support for parents and teachers ‘managing’ this situation.

SENAssist software was created by specialist teachers to help develop structure from an early stage. It’s based on autism specific training, and years of practical teaching experience. SENAssist was created to be something to switch on and see work without having to know the theory first. By using ‘autism friendly’ structures and motivators from the start we secure the foundations for a positive relationship.

So what makes SENAssist ‘Autism Friendly?’ 

Animated writing with associated symbols

Visual and repetitive: Children with autism are often visual learners. The stories and activities have symbols that associate with the words. The writing is highlighted as the words are read. The first 100 high frequency words are repetitively used for the stories and activities.

SEN Assist activities are based on language activities used by speech therapists. The resources are based on PECs.

Speech Therapy: Activities are based on speech therapy, helping teach prepositions, pronouns and sequencing. Resources are designed to enable pre verbal children to answer questions.

Praise is also varied to extend the vocabulary.

Individual motivators: The first thing the child must do is choose their motivating character. There are 48 to choose from – pirates, dinosaurs, trains etc. This motivator stays on the screen throughout cheering them on.  

The work system at the side will show how many tasks they have left to complete.

Work systems and token boards: A work system shows the child how much they must do creating a visual structure. The use of ticks and crosses on token boards is deliberate – they learn to accept seeing a cross when it is introduced on the computer.

Self esteem: It’s important to set a level to suit the child. We must set them up to succeed and introduce challenge gradually.

10 Tips for developing a healthy relationship with IT

  1. Have the computer in a communal area.
  2. Have ‘computer time’ so it becomes one of many daily activities.
  3. Establish the idea of turn taking early on.
  4. Encourage a range of different activities on the computer.
  5. As skills develop use a work system to structure computer time.
  6. Give typing a function by making their name the computer login.
  7. Avoid programs or Apps that speak for the child before they are 6.
  8. Try ‘switch’ programs for teaching cause and effect.
  9. Try adapting the keyboard or getting a one button mouse.
  10. Use visual count downs and stick to the ‘rules’.

The Education Resource Awards: SEN Assist wins the award for ‘Best Special Education Resource with ICT’.

SEN Assist has recently won the award for ‘Best Special Education Resource with ICT’ in The Education Resource Awards.  The judges commented that “The Fairy Tales was an inclusive, interactive product that allows a wide range of students to improve their knowledge of high-frequency words. With logical lay-out, clear instructions and motivating images, the product will help to engage the learner. Additional printable activities also help to ensure that the teacher can offer further support”

You find find these innovative products at http://www.senassist.com/

Adele has kindly donated a copy of their Early Shakespeare software to More House School, an independent specialist school for boys with SpLDs and ASDs, attended by my sons.

 

Autism Eye Magazine – helping you to help your child

In the six years since our sons were diagnosed with ASDs, I have come into contact with a whole new set of parents – those whose children are also affected by autism and other special needs.

These people have very different parental experiences to those with ‘ordinary’ children. Most have experienced the disapproving looks from other parents at the school gates as their child has yet another meltdown; they have fought their way through the jungle of locating services and appropriate education for their children, often through the fog of exhaustion of worry and broken nights.

And yet, they are the most inspiring, determined and dedicated people I know. Some have taken up voluntary positions in support groups to help other, similar parents or have found other ways to use the skills they have to help bring much needed information to families coping with a life they didn’t expect.

Two such people are Gillian Loughran and Mark Hayes who are the parents of a child with autism, as well as both being national award-winning journalists. They  created the quarterly Autism Eye magazine in order to provide in-depth, well-researched, useful information for parents and professionals who care for children with autism.

When their son, Finn, was diagnosed with the condition they found very little information available on how to help him. They launched Autism Eye so that other parents in their position, as well as professionals, could learn much more easily about new research, treatments and therapies that could help children with autism.

As well as a quarterly magazine, Gillian and Mark also publish news and features on the Autism Eye website, which can be found at www.autismeye.com.

Subscriptions to Autism Eye are available as printed editions and digital downloads, and are priced to be affordable to parents and carers. The subscriptions page is here: www.autismeye.com/subscribe

The latest issue has a feature on autism and nutrition – a must read.

Why I turned my back on my TV news career

Recently I appeared in Woman magazine – a small section in a feature entitled, “Meet the regret-me-nots”

My piece was headlined, “I regretted becoming a full-time mum”, which isn’t strictly accurate – rather I found myself, like many mums who give up professional life for stay-at-home motherhood, feeling a certain wistfulness for opportunities forgone. I also experienced the loss of self-esteem that many women feel when they no longer have a full-time, possibly high-flying career. In fact, when I stopped being a television news presenter, even my own mother (herself a career woman) stopped boasting about me. After all, I was just a mum now, wasn’t I?

Well, I happen to think that parenting is the most important job that anyone can do – because done badly you can ruin the life and chances of another human being. And if I’d been at work, I may not have had the time or energy to work out why my children were different. The subtleties of Asperger’s can easily be missed or misinterpreted and that can lead to the child not getting the help they need to fulfill their potential.

You can, of course, be a great parent and work full-time and I would never suggest anything else – other peoples’ lives are simply none of my business. But for me, once I’d held my son, my decision was made. I think my colleagues were a little shocked that this ambitious, somewhat fierce, journalist could just walk away from what I loved doing so easily.

We had to move to a cheaper part of the country to afford it at the time, but my own chaotic childhood had left a deep yearning for a stable, traditional family structure and I’m lucky that, despite the special needs issues, we still have that. I’ve also replaced my career in the often soulless world of television news with something better – my family, my writing, the special needs work and my new job helping people affected by congenital limb differences. I’m a better person because of it. Maybe now my (sadly, late) mum would even boast about me again if she could!

Anyway, now a new issue of Woman is out, I figure they won’t mind if I post my own little piece here. You can find the Woman Magazine website here. Thanks to reporter, Nikki Osman, who wrote the piece. Click the image or the link below to read it for yourself.

My husband and I are off on a spa break tomorrow, courtesy of GP carers breaks in Surrey  If you’re a carer in Surrey, you could be eligible too. If you know someone this applies to, please pass the link on to them.

Look out for the regular story round up tomorrow!

Woman Magazine 9April-Tania Tirraoro.

World Autism Day April 2

This is from the United Nations about World Autism Day:

The annual observance of World Autism Awareness Day should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face, according to Secretary-General Ban Ki-moon.
“Autism is not limited to a single region or a country; it is a worldwide challenge that requires global action,” states Mr. Ban’s message for the Day, observed annually on 2 April. “People with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

In December 2007, the United Nations General Assembly adopted a resolution declaring 2 April as World Autism Awareness Day in an effort to draw attention to a pervasive disorder that affects tens of millions around the globe. Autism is characterized by varying degrees of impairment in communication skills and social interactions and in restricted, repetitive patterns of behaviour.

In his message, Mr. Ban notes that although developmental disabilities such as autism begin in childhood, they persist throughout a person’s life.

“Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement,” he states. “Reaching out to people with autism spectrum disorders requires global political commitment and better international cooperation, especially in sharing good practices.”

He stresses the need for greater investments in the social, education and labour sectors, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents.

“We also need to promote further research, train non-specialized care providers, and enable the autism community to more easily navigate care systems to obtain services that can support and mainstream individuals with autism,” the Secretary-General says in his message.

Today in New York, Vienna and Geneva, the UN Postal Administration (UNPA) released six commemorative postage stamps and two collectible envelopes dedicated to autism awareness, with images created by artists who have been diagnosed with autism.

The stamps will send a “powerful message to people around the world that talent and creativity live inside all of us,” said Mr. Ban.

The UN is the only organization in the world which is neither a country nor a territory that is permitted to issue postage stamps. It is the only postal authority to issue stamps in three different currencies – the United States dollar, the Swiss franc and the euro.

UNPA’s chief, David Failor, told a news conference in New York that the selection process enabled the agency to discover the many hidden talents that people diagnosed with autism have.

“Probably the best part of the process, that we learned, is the talents that some of these people have and working with their families and their relatives and their supporters, and what a great network of people that there is around the world that are really passionate about the subject and want to help raise awareness about it,” he said.

UNPA originally intended to pick three designs to feature on each of the three denominations that it issues stamps for. However, the artwork received was so good that it decided to feature eight designs from among the 200 different pieces of artwork it received.

The stamps will go on sale in New York, Vienna and Geneva, beginning on Monday.

Conversations with an Aspie teen

When your Asperger’s son is deep in adolescence, it’s sometimes hard to tell whether their behaviour and conversation is more autistic or teenager. Two examples below from (extremely intelligent) Son1:

Son1: Are you saying I’m fat?

Me: No, it’s just that I need to put my office chair down and I don’t have the weight to push it.

Son1: So you ARE saying I’m fat.

Me: No, but you’re five inches taller than me and therefore heavier.

Son1: I know you think you’re 5′ 3″ but you’re not. You’re 5′ 1″. Which means I’m seven inches taller than you.

Me: Deep sigh.

Later…

Son1: What’s this suitcase doing at the bottom of the stairs?

Me: It’s your suitcase that I’ve been asking you to take upstairs for the last three days.

Son1: No you haven’t.

Me: Yes I have, ever since you got back.

Son1: No you asked me to take my CASE upstairs and this is a suitcase, so I didn’t know what you were talking about.

Me: Slaps own forehead.

Cambian launches Specialist Education Scholarships for children with Asperger’s or autism in their schools

Many parents of children with Autism and Asperger Syndrome have faced unbelievable struggles to get the right education solutions for their children. Some have fought their LEAs for funding to the school most appropriate for their child and not succeeded. Now, specialist independent education provider, the Cambian group, have launched a scholarship to fund two children at one of their schools. It’s a fantastic opportunity and is the first of its kind.  Jeremy Wiles of the Cambian group, explains why they’re doing it, in this guest post written exclusively for Special Needs Jungle: With over 30 years of experience in supporting children with complex educational needs, the Cambian group is no stranger to seeing how children can thrive and achieve things never thought possible, within the right learning environment. Sadly, not all children with Asperger’s syndrome or autism in the UK have the opportunity to attend a school which is specifically designed to address their individual learning and behavioural needs.  It is from this understanding that we first conceived the idea of launching a scholarship scheme for our residential specialist education schools. For parents, securing the right specialist education for their child with Asperger’s syndrome or autism can be a struggle. As we know, each situation is unique; some parents find their child performs academically but they encounter behavioural issues in the home or school. Equally, some children with Asperger’s syndrome or autism find school a huge challenge, and may face problems with bullying or homework. Our specialist schools are set up to address individual needs to ensure every child reaches their own personal best, however it is defined by them or for them. Of course, many parents of a child with Asperger’s syndrome or autism will have already been through the ‘statementing’ process. Finding the right school is another hurdle in what is often a lengthy process that can cause considerable stress for a fmaily. In recognition of this and the positive feedback we continue to receive from parents and children at our schools, we decided that it was time to pilot our first scholarship scheme. Our Specialist Education Scholarships schemewent live two weeks ago and we are now offering two residential placements at one of our Ofsted rated ‘outstanding’, specialist education schools. These placements will be available for two children with complex educational needs linked to Asperger’s syndrome or autism.

Image courtesy of Cambian

We’re thrilled and proud to be offering these placements to two children, at one of our residential specialist education schools.  The scholarships will be awarded after assessment by a relevant school, to ensure that the level of needs of the child would be matched with the right school.  This would typically mean that a child had a statement or was progressing through this process, at the time of application. The scholarship will provide an opportunity to place two children into a supportive and nurturing learning environment, for the duration of their education at one of our schools. We cannot urge parents enough, to come forward and find out more about what this scholarship could mean for their child and we are welcoming any questions that they may have. What our specialist schools provide, is a unique opportunity to experience the very best child-centred, individualised educational support needed by these students. We offer a unique Active Learning™ programme, which ensures a collaborative, multi-disciplinary approach to education, care and therapy, and access to a wide range of facilities to help students learn and progress. Our results speak for themselves; 40 percent of our post-16 students with Asperger’s syndrome return to mainstream college and around 85 per cent of students with autism achieve their individual education plan targets. It has been really exciting to see the applications roll in so far, but we really want to hear from more parents out there, and as such, we are encouraging as many people as possible to join in our conversations on Twitter. You can find us by following @Cambian_schools and don’t forget to include #CambianScholarships in your tweets, to join in the conversation. We will be hosting another live Tweet-up again very soon. Parents or guardians are able to apply for a scholarship place by downloading an application form from our website. The application should be supported by a professional who is currently involved in the care and education of your child. Two scholarship placements will be awarded in June 2012 and the deadline for submitting an application is 1st May 2012 at 5pm. If you would like to find out more about the scholarships, visit our frequently asked questions page. If you have further questions about the scholarships or would like to speak to someone about one of our schools please call Cambian’s SEN Helpline on 0800 138 1184. We look forward to hearing from you.”  

Exciting news – a conference speaking invitation

I have exciting news – I am to be a keynote speaker at the forthcoming SEN Conference, Towards a Positive Future that is to take place in Newbury in June. I will be talking about being a parent of two sons with autism and how parents-carer forums such as Family Voice Surrey, of which I am a committee member, are helping to shape SEN services with the SEN Green paper pathfinders. Surrey will be trialing, among other areas, the proposed Education Health and Care Plan for which I attended a day-long meeting yesterday.

Apparently, children with existing SEN statements will not automatically be moved to an EHCP although their parents can request it. They may be moved at a transition point if appropriate, however.

It is clear from the meeting that there is much work to be done and in a relatively short time as it is expected the new procedures will be brought in by 2013/14. There are some positive proposals and still a lot of detail to be worked out, but the general principle is that the child and family should be at the centre of the process. It’s not very clear to me why this isn’t already the case.

The whole system at the moment is adversarial and there is much distrust on both sides, so to make the new process succeed there needs to be a major cultural shift towards working together for the benefit of the child. At the moment LEAs are (rightly or wrongly) seen as penny-pinching, budget-not-child focused parent-haters who are determined to give as little as they can get away with. LEA staff, meanwhile see some parents as just trying to bag a statement to get their children into the best schools that cost the council hundreds of thousands of pounds a year when (the LEA feels) local provision would do just as well. There are many parents left vastly out-of-pocket by legal fees as they pursue the most appropriate option for their child.

Personally, I can’t understand why any parent would head into the stressful, potentially expensive jungle of statementing unless their child has significant needs that are not being met within current school resources – I mean, why would you put yourself through that? Every parent I have encountered who is seeking a statement has experienced their child going through years of difficulties, under-achievement and unhappiness before they become convinced that this is the only route. I’m sure there are exceptions, but they must be just that – exceptions.

Anyway, by the conference in June I expect some parents will have been recruited for the trials and we will have more detail of how the final system will look. Other speakers include the National Autistic Society president, Jane Asher, Janet O’Keefe, editor of “Towards a Positive Future”, Educational Lawyer, Clive Rawlings and Kevin Geeson of Dyslexia Action among others.

Below is a link to a booking form that you can use with all the details on.

Towards_a_Positive_Future_Conference_2012_flyer

Roaming the Special Needs web this week…

Another busy week in the news and blogs – here’s some of my favourites as well as a round up of posts on Special Needs Jungle in the past seven days. Add yours in the blog comments below

Conference for parents of children with special educational needs and professionals

National Autistic Society president, Jane Asher, will be speaking at a conference in Newbury, Berkshire, in June for parents of children with SEN and associated professionals. The agenda will be published soon but the flyer is below and a downloadable pdf version is at the bottom.

Towards_a_Positive_Future_Conference_2012_flyer – Download as PDF

 

Games Workshop – the perfect hobby for Son2

Until recently, Asperger’s Son2 had no interests that didn’t involve a computer or a games console.

Son2 explains the rules to his Dad

He used to love Lego, but that faded into the background the older he became. He used to spend hours reading and memorising Horrible Science magazines, but that too, petered out. He spends far too much time playing Xbox but at least half the time he’s playing Xbox Live, talking to his school friends as they play together, remotely.

Over the summer however, he became interested in wargaming. Not computerised, but Games Workshop wargaming, painting figures and playing board games with them. This was a revelation and we’ve been quick to support him. This entails spending vast amounts of money on Orks (for my husband to play with him) and Space Marines (for him) as well as Codex books, paints and carry boxes.

Most Sundays I take him to Games Workshop where he paints alongside a few other boys, instructed by the fantastic guys who run the store. These guys are amazing – always on hand to help in a low key, let-them-get-on-with-it sort of way. They’re not teachers but my son is learning valuable skills both social and practical.

Dad being resoundingly thrashed at a game by Son2

Son2 has dyspraxia and has always found art, painting and writing incredibly difficult. But the care and detail he puts into painting his Space Marines is a joy to see. I’m certain it’s improving his fine motor skills which should improve his school artwork. He’s also learning from Nick, the GW guy, more about rules and how to play the games. Strangely, there’s always a little something Son2 decides he needs to buy at the end of the session as well.

It’s not wholly surprising that he’s picked a hobby that involves collecting and being immersed in a scenario – but if it’s improving his communication skills with real people, I’m all for it.

So even though on most Sundays, I can be found wasting two hours wandering around the adjoining shopping centre or sitting in Starbucks on my iPad as I wait for his session to finish, it’s worth it – just to see him interacting with something that doesn’t need plugging in.

The basic gaming table

Best of all, he’s enjoying himself and it’s a hobby my husband can enjoy with him as my husband sculpts his own figures – not fantasy but World War II. This game in the pictures lasted two days and Son2 thrashed his Dad, much to his delight.

What’s your special needs child’s favourite pastime?

Josh’s book aims to help parents of Asperger’s kids

Raising Martians - from Crash-landing to Leaving HomeA student with Asperger’s syndrome has written a book to help parents who have children with the disorder.

Joshua Muggleton, 22, a student at University of St Andrews, wrote Raising Martians to help parents understand the minds of their children.

The book has a foreword from from world-renowned Asperger Syndrome expert, Tony Attwood. Opening with the very basics of what autism is, Joshua covers mental health, sensory issues, obsessions and rituals, friendships and social situations, and shopping, travelling, and holidays, before tackling what is arguably the biggest challenge of any Aspie child’s life: school – and with it, bullying, homework, and other challenges. Providing the inside track on Asperger Syndrome in childhood, he describes practical ways in which parents and teachers can help, and offers a wealth of advice and helpful hints and tips for approaching common difficulties.

Josh, who is from Surrey and is a member of the National Autistic Society, said the book title came from the idea that “raising a child with Asperger’s can feel like raising an alien”.

The fourth-year psychology student said: “People with Asperger’s have a lot to contribute to society but there is very little education out there for parents and teachers. Education is something of a silver bullet when it comes to helping young people with the condition and without it, deep-set problems can develop at school age.

“My book offers a more personal insight because it’s been written by someone with the condition and not a clinical psychologist. Every child is different but I try to put the parents in the child’s shoes and facilitate some understanding.”

He has been signed up to write a second book to help make research into Asperger’s more accessible to parents and teachers.

He said: “The way I see it, I could either lash out or try to make a difference. There are kids out there having a harder time than me, and adults too, and if I can help just one person, this is my chance to give something back.”

“There is lots of information in the book, and I really hope that people take that on board, but to me, what is more important is that they gain an understanding of, and an insight into life with Asperger Syndrome. If you understand someone with Asperger Syndrome, then knowing that it is named after Hans Asperger is redundant. While that sort of information might be interesting, it is far more useful to know how the person with Asperger Syndrome thinks: what he or she might find hard and why, what things might set them off, and what things will calm them down, what things they will be really good at, and what things they might struggle at.”

Source: PA, JKP Publishing

Find the book on AmazonUK  or AmazonUS or at JK Publishers

 

Hyperbaric Oxygen Therapy for children with autism

An interesting new treatment for children with ASD is Hyperbaric Oxygen Therapy (HBOT). A 2009 study showed it can have beneficial effects on the symptoms of autism and a 2011 study on Thai autistic children showed that 75% of children showed some improvements.

Jeff Birnberg of Andi Hyperbarics writes here exclusively for Special Needs Jungle explaining how HBOT works:

“What is Hyperbaric Oxygen Therapy (HBOT)? If you’re like most people, you just drew a blank, but if you are a diver who ascended from depth too quickly or someone who was struck down by carbon monoxide poisoning and in both cases lived to talk about it, in 99% of those cases it was HBOT that saved your life.

If you suffered a stroke or traumatic brain injury and were treated with HBOT, you were the fortunate recipient of a treatment that helped to restore some or all of the functions you lost. If you are the parent of a child who had been diagnosed with Autism* and included HBOT as part of the treatment protocol, you most likely saw improvement in your child’s health and wellbeing.
At sea level, the body breathes ambient air, absorbing about 21% Oxygen (O2); this is the most oxygen the hemoglobin can absorb under normal circumstances. This oxygen is then distributed throughout the body via the bloodstream. But what happens when, as the result of a bodily injury, or degenerative condition, the supply of O2 is decreased or lost completely? The cells begin to shutdown and of course will eventually die. The result is the retardation of or the complete loss of cell function and the consequent reduction of or elimination of body and brain functions associated with those cells.
With HBOT, we create an environment where the air pressure is greater than sea level and the person breaths medically pure oxygen; oxygen, generally at 93% to 100% purity.  As a direct result of the increase in air pressure the oxygen will now be absorbed into the body’s fluids. Those same cells that were in suspended animation or dying from lack of Oxygen will begin to receive O2 via the body’s fluids and responding; will begin the process of healing.

Will HBOT work for everyone? No. For those for whom it does work, are the improvements in health and well being worth the time and investment needed to see results? Absolutely!
There are options for receiving hyperbaric oxygen therapy. There are hospitals and private clinics run by GPs; the cost ranging from £100 – £200 per hour. There are charities such as the MS National Therapy Centres**, which will consider treating autism and where the cost is minimal. There is also the option of purchasing a soft portable hyperbaric chamber which can be placed within one’s own home and operated solo or with the assistance of a trained family member. Chambers for home use are more convenient, eliminating the time and difficulties associated with travelling to a remote location. It’s also much less costly over the long term, making it possible for families or even families acting together to share a chamber, to provide a treatment that has helped so many.

Links:

Special Educational Needs stories of the week

This will be the last one of the year as i take a break and concentrate on my boys for Christmas. Have a great Christmas. If you do something different to accommodate the needs of your child, would love to hear about how you manage with the festive season.

Don’t forget my Christmas Giveaway – you just have to go to www.facebook.com/specialneedsjungle and ‘like’ it and you’ll be entered in the draw for a copy of my SEN book, Getting started with Statements – even if you don’t need it yourself, you may know someone who does.  If you already like the page, just leave a comment asking to be entered.

Have you ever applied for a Statementing Assessment for your child? If so, take this poll!

I’m carrying out a poll into how people fare when they initially apply for a Statutory Assessment for their child. If you’re been through it please take the poll and share the poll with as many people as possible. The results will be published in the New Year. Thank you!

Christmas Giveaway – a copy of my SEN Book

SEN-Getting Started With Statements‘Tis the season and all that, and I’m giving away one copy of my SEN book, Special Educational Needs – Getting Started With Statements.

All you have to do is hop on over to my Special Needs Jungle page on Facebook and give it a ‘like’ If you already ‘like’ it, leave a comment on the page saying you want to be entered.

I’ll get my son to emerge from his Technolair bedroom on New Year’s Eve to pick the winner at random. And if you know my son, random is his middle name.

Merry Christmas!

https://www.facebook.com/SpecialNeedsJungle

SEN & Special Needs Stories I’ve spotted this week

Here’s my usual round up of the more interesting special needs stories in the UK this week.

SEN Magaine: Better Futures group calls for ADHD assessment at second-term exclusion 

WebTV: “What’s the difference between a problem child and a child with a genuine problem such as ADHD? – Video « Special Needs Jungle

BBC News:  Slow starting pupils ‘don’t catch up’  This makes interesting reading

Dept of Education: New Studio Schools to bridge gap between school and work  I think this is a great idea- do you?

Made For Mums: Choosing the right school for your child with learning difficulties @MadeForMums

National Autistic Society: Autism journal available free for limited time FULL of interesting research look while it’s free

Not As Advertised Blog: Advice needed for teenage party for AS son with new girlfriend! See my post

The Observer: It’s our narrow view of education that holds pupils back | Yvonne Roberts | Comment is free

OnMedica: GPs to be offered help in identifying autism – About time!

National Children’s Bureau: Strong opposition to cuts to disabled children’s benefits 

If there’s an interesting site you think I should know about, please send me the link.

Tania

 

SEN round up for this week

Below are stories with an SEN angle that caught my eye this week.

Have I missed your story? If so, send your RSS feed link to me via my Contact page

IPSEA – A wonderful charity for free advice and support for SEN

In my book, Special Educational Needs, Getting Started With Statements, I make several references to a special educational needs charity called IPSEA.

IPSEA provide free advice and support for people who have children with SEN and offer an invaluable service. Today I am delighted to have a guest post from the charity’s Chief Executive, Jane McConnell

Jane McConnell, Chief Executive of  the Independent Parental Special Education Advice charity or IPSEA, became an IPSEA volunteer 10 years ago. She has been a paid IPSEA staff member for the last 7 years and has a 12 year old son with complex SEN. Jane has overcome several substantial hurdles to get the right education for him and has firsthand experience of what thousands of parents have to go through. Here, she explains what IPSEA are all about and how the charity can help you:

What is IPSEA?
IPSEA is a registered charity providing free and independent legally based advice for parents whose children have SEN / disability. We have been supporting parents since 1983. IPSEA covers England and Wales. We use highly trained volunteers to deliver all our advice and support. We offer more support to the most disadvantaged families. A small team of paid part time staff co-ordinate and train our volunteers.

What does IPSEA do?
IPSEA advises families whose children have all types of SEN / disability, including behavioural problems, communication difficulties, learning disabilities and autism. IPSEA often helps families before their child has even been diagnosed. IPSEA’s legally based advice gives parents the confidence to exercise their rights. This basic understanding of the law equips families to be more involved in the decisions that affect them and helps them to avoid future issues. IPSEA helps around 3,000 families each year – thanks to our dedicated volunteers and supporters.

How can IPSEA help me?

IPSEA offers parents the following free services:

Common problems

Many simpler and common issues with the SEN system can be resolved with the help of IPSEA’s on-line resources:

What parents say about IPSEA

Our website has quotes from parents we have helped. We survey the parents that have used our services to ask them for feedback. Their feedback helps us improve our services and secure the funding we need to keep them going.

Using parents’ experiences to influence change

IPSEA gathers evidence and uses it to lobby for changes to current legislation. We also attempt to correct the practices of local authorities whose policies are not in line with legislation.

1,039 people took part in our SEN Green Paper survey. 796 of them were parents of a child with SEN. They agree with IPSEA’s strong belief that parents’ views need to be listened to and respected by the professionals responsible for assessing and educating their children. Without this basic respect, mistrust builds up. This can have a detrimental effect throughout the child’s education. IPSEA’s full response to the SEN Green Paper proposals is here .

IPSEA works constructively with the government. We were particularly pleased that the new administration activated the right of parents to make an appeal to the SEND Tribunal if their child’s Statement did not reflect the needs of the child.

We gave evidence to the parliamentary education committee on the SEN Green Paper. We also successfully campaigned to protect legal aid for SEN appeals.

Keeping IPSEA going

It costs IPSEA around £30 to provide telephone advice to a family and around £300 to provide a tribunal caseworker. We appreciate all the donations we receive. You can donate using PayPal or debit/credit cards. You can also set up regular donations.

IPSEA is always looking for more volunteers. You need to complete our training first. This training is very thorough so we ask you to commit to actively volunteering with us for at least 2 years. “I enjoy the feeling of empowering parents – talking them through their problem and sending them off with a clear plan of action” says one of our experienced volunteers.

SEN stories that caught my eye this week (w/e2nd Dec)

Here are some stories I liked this week as well as some of my own SEN posts from the week that you may have missed (how very dare you!)

Did I miss your SEN story? If so email your RSS feed to me via my contact page

SEN Lawyer Links

If you are looking for additional help, there are free services such as IPSEA and SOS!SEN as well as the NAS Advocacy Service is your child has ASD. You may decide, however, that you would prefer to use the services of an SEN Expert Lawyer. Below are the names of some such experts. If you are an education lawyer not on this list or you know of a lawyer that you can personally recommend, please contact me

  • SEN Barristers –  Gulshanah Choudhri has a child of her own with Down’s Syndrome, so as well as legal expertise, she has a personal understanding of the SEN issues. She stresses that, due to recent changes, she can offer a full service from initial consultation through to Tribunal, if necessary.

“With Gulshanah fighting in your corner and bringing her incisive mind and laser like cross examination skills to bear upon proceedings, you can feel confident that she will expose inconsistencies in the expert witnesses of the LA. I for one have had the privilege of seeing her in action and cannot commend her services highly enough.” Barrie Griffiths, Portsmouth

  • Douglas Silas Solicitors -I have met Douglas and he is dedicated to the SEN cause. He also has an extremely informative website. (North London based)
  • SEN Legal  Principal Solicitor is Melinda Nettleton and she is supported by Karen McAtamney and Adam Ottaway Friel. (Suffolk based)

“SEN Legal represented us and managed to secure us a placement at More House School. We definitely couldn’t have done it without them. Sally Brockaway

  • Maxwell Gillott – Quoted in Chambers and Partners 2011: Education: Individuals, Elaine Maxwell has been advising on provision for severely disabled pupils. Sources say she has a “phenomenal understanding of the issues that parents dealing with SEN face.” (Various locations)
  • Anthony Collins LLP I have met Inez Brown of this company and she is very well informed, highly experienced and committed. They are based in Birmingham
  • Children’s Legal Practice “We have acted in connection with numerous appeals to the Special Educational Needs & Disability Tribunal. These appeals have included cases involving statutory assessments, contents of statement, ceasing to maintain statements and Part 4 of the statement.” (Hampshire based)
  • AM Phillips “As both a professional, working within the field of education law, and as a parent of a son with special educational needs, I understand the pressures that parents experience on a daily basis.” (London, Wales)
  • Sinclairs Law “leading experts in the field of Special Education Needs (SEN) & Education Law, acting throughout England & Wales.” (Birmingham, Cardiff, London based)
  • JMW  “JMW Solicitors are experts in all aspects of special educational needs law; for over a decade JMW Solicitors’ medical negligence team has been dedicated to this tricky area of the law.” (Manchester/Salford based)
  • Moore Blatch “Let our wealth of experience in this niche area of law work for your child” Leena Hurloll, Senior Solicitor (South)
  • CDLaw (Robert Love) “Christopher Davidson’s experienced education law team is dedicated to helping ensure that your child receives the education he or she needs.” (Cheltenham based)
  • Fisher Jones Greenwood LLP “Fisher Jones Greenwood’s education law advice service is available to anyone with concerns about a child’s or their own education.” (Essex based)
  • Turners Solicitors “We specialise in representing parents of children with special educational needs whatever their diagnosis” (Wales based)
  • Langley Wellington “Langley Wellington has a very experienced team dedicated specifically to all aspects of education law.  The team’s success rate in SENDIST Appeals is around 90%.” (Gloucester based)
  • Match Solicitors “Match Solicitors are experts in assisting children with special educational needs.” (London based)
  • Stones Solicitors “Do you  have matters relating to schooling which you are concerned about or do you know others who might? If the answer is ‘Yes’, then Stones is able to offer advice on all Education Law matters.” (Devon based)
  • Allen & Co “Education law is our primary area of expertise. Advice and help is provided on school admission appeals, exclusions, school transport, special educational needs (SEN), equality and discrimination matters and more general education or school issues.” (Buckinghamshire based)
  • Education Advocacy “Education Advocacy is a specialist legal consultancy, which provides legal support and guidance to parents of children with  special educational needs.” (Somerset based)

“We used Nigel Pugh of Education Advocacy. He was very reasonable and I do not feel the outcome would have been the same without him. My son is now fully funded at a special school”  J Faux

  • Advocacy & Mediation “We are experts in supporting parents and carers of children with special educational needs and disabilities”

“I can highly recommend SEN advocate Fiona Slomovic of Advocacy & Mediation. Fiona helped secured a place for my AS son at a Cambian AS-specific school with a waking day curriculum without going to tribunal. I recommend her to everyone. She is highly experienced and wins most of her tribunals” A Elliott

Finished at School – Important Campaign by Ambitious about Autism

Today I am delighted to feature a guest blog from Anabel Unity Sale of Ambitious about Autism to highlight their Finished at School campaign:

Going to college after school is a rite of passage for many young people. Not if they have autism it isn’t. The latest figures suggest that less than 1 in 4 young people with autism continue their education beyond school. All too often, for many young people with autism school is the end of their education.

There are just 10,440 learners with autism in mainstream further education compared with over 43,000 children with autism in mainstream schools. In specialist colleges the numbers are even worse: just 3,600 places for learners. On top of this there are only a dozen or so supported employment projects for young people with autism around the country. Disabled people are 2.5 times more likely to be not in education employment or training (NEET) than their peers. Just 15% of adults with autism have a job.

These figures speak volumes. There is a generation of young people with autism being written off because they cannot access post-school education. Typically, their choices are to stay at home with their families or go to a residential care home, often with people over twice their age. What young person wants to do that when they are on the cusp of adulthood?

This is why Ambitious about Autism launched the Finished at School campaign last month. We don’t want to see young people with autism wasting their lives because they are not being offered the proper support to thrive and succeed.

In order to find out about the issues young people with autism and their families face when they leave school we commissioned some exclusive research. We spoke to young people themselves, their parents and carers, education providers and policy makers. The findings were sobering. Young people and their families describe facing a ‘black hole’ after school, and this causes them great anxiety and stress. “The options were non-existent. I didn’t have any choice,” a young person told us.

One parent reported similar difficulties: “There is very little provision out there and far too many people needing it. We have always been very focused, because you have to be. People who shout the loudest get the input. But what about those who can’t do that? What happens to them?”

Another parent revealed: “The world beyond school is a very scary place for Clare and me. My worry is that when she leaves school, Clare will regress and lose the skills and confidence that she has developed over the last 10 years. She needs to move on to a place that understands her and continues to develop her.”

Professionals working to support young people with autism also reported facing similar problems. Like parents and carers, they found the current funding system acted as a barrier to learning.

“Additional Learning Support rules are frustrating. I’m an expert in spreadsheets and maximising allocations – you become a bureaucratic fundraiser. I would much rather spend time improving the lives of learners,” an additional learning support manager said.

Education options are also limited. A transition support worker told us: “There is very little around London for our young people, and most of them are looking for something local. The things that are available tend to be far away, and parents don’t want to travel that far to their son or daughter. The recent care home scandal won’t have helped either.

There is an urgent need to create more effective education options for young people with autism once they have finished at school and to support them into work and community living. To help achieve this, Finished at School is calling for:
• A clear legal right to educational support up to the age of 25 for young disabled people
• A funding system that gives young people and families more information, choice and support
• A cross-government focus on outcomes and destinations for young disabled people
• A further education workforce with the skills to support young people with autism to achieve their ambitions

Robert Buckland MP, Chair of the All-Party Parliamentary Group on Autism, supports the campaign. He says: “I urge everyone to sign up to the Finished at School campaign. We will all benefit from the contribution young people with autism can make if we break down the barriers they currently face, and enable them to achieve their ambitions.”

It is not all doom and gloom though. There are some excellent examples of post-school education that support young people with autism to achieve their ambitions. Steve Philip describes as “outstanding” the support he has received at Weston College, in Weston-super-Mare. He adds: “Having people around who are trained in and understand autism and how it impacts people, and who take the time to get to know me as an individual has changed my future, and has helped me get to where I am today.”

* If you would like to pledge your support for the Finished at School campaign, share your own experiences or and read more about what we are doing please visit: www.AmbitiousAboutAutism.org.uk

Anabel Unity Sale is Press and PR Officer at Ambitious about Autism, the national charity for children and young people with autism

SEN Stories of interest in the last week

Below are a few of the more interesting stories I’ve seen about SEN in the past week. If you’d like to receive this weekly update in your inbox as well as other Special Needs Jungle posts – subscribe on the left by email or on the right to the RSS feed.

What do parents of a newly-diagnosed child need?

I recently attended the launch of Family Voice Surrey, the new local forum for parents and carers of children with SEN and disabilities in Surrey. It’s part of the National Network of Parent Carer Forums and aims to give Surrey parents a voice in the policy and decision making process for disability and SEN services.

As part of the table discussions we were asked to identify the top three challenges facing families with children with disabilities and SEN in the county. When each table’s facilitator stood up in turn and read out their lists, almost every table had identified the same issue – information and support after diagnosis.

Everyone agreed that was is needed is an independent support worker who had all the answers to the questions that a diagnosis sparks in parents. This includes where to find information about assessments, financial assistance, support groups, access to services and education about how to help their child and so on.

When your child receives a diagnosis of any illness or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD. For a while, parents need to take stock, maybe reassess their hopes and expectations for their child. Perhaps they also need to grieve.

But then comes the stark reality that they have to take action to help improve their child’s life chances – and that means finding accurate information and at a local level – who is a good paediatrician, which are the appropriate schools, does my child need an assessment for a statement and how do I go about that? How do I find out about occupational therapy or speech and language therapy?

There are lots of great volunteer organisations out there, but the problem is finding the ones that are right for you and your family. So, what is needed is someone who can be sympathetic and knowledgable and who can act as a support and a signposter, maybe even an introducer to that the family needs.

So, who can provide such a service? Who will fund it? These are two good questions – maybe someone reading this post has an answer. If you have any ideas how  this can be achieved or what else a newly diagnosed family might need, please leave a comment…

My article in SEN Magazine: Can teachers recognise SEN in bright pupils?

I have an article in the current issue of SEN Magazine, entitled Can teachers recognise SEN in bright pupils.

Me & my boys circa 2003

Both my sons, Giorgio aged 12 and Luca, 13, have Asperger’s syndrome, and both are extremely intelligent. Luca, however, struggled with understanding the norms of behaviour, was prone to emotional or physical outbursts and was virtually friendless. He needed to be first in everything and this constant rushing affected the quality of his work. Giorgio, a gentle soul, could read at three, but still struggles to write legibly. Group work was impossible and his original way of thinking made it hard for him to follow instructions. One teacher remarked that, “He has informed opinions which he expresses well but they are often tenuously linked to the subject matter.”
Before they were diagnosed, their infant school tried behavioural charts for Luca, and eventually, after I insisted, a literacy software programme for Giorgio. However, when you don’t know why a child is experiencing problems in the first place, it’s difficult to put the right help in place….

To read the rest of the article, click here (SEN Magazine website)