How to talk to Tigers

How to talk to Tigers?  Why are Special Needs Jungle posting about Talking to Tigers?  It really doesn’t sound like our usual post, does it?

How to Talk to Tigers is written by Jacob Tilley.  Jacob spent seven years living in the forests of India learning how to roar and growl (or so his bio says).  He then decided to write a book about this and he invited Ruby Thompson to illustrate it.  Ruby is a young girl who has autism

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K enjoying a good read

“How to talk to Tigers” is one of those books that as you read it, you know everyone will interpret  differently.

Initially, for me, I was purely looking at the images and thinking “wow”.  It made me remember that we should never limit our expectations.  The illustrations are colourful and fun.

Then my eldest, K, picked up the book and started to read it out loud.  He was in fits of laughter.

The book describes how to talk to “tigers” in different moods, e.g. how to talk to a poorly tiger, how to talk to an angry tiger, a naughty tiger….  you get the idea.  It’s written in rhyme scheme (i.e. the first line rhymes with the second, the third line rhymes with the fourth, etc) and my kids love this and as a mum, I love reading this out loud – so easy and fun.

I think for K, rhyme scheme just makes sense.  There are no shocks, no surprises, lines will rhyme and this is perfectly logical to him.

As K continued to read, between giggles, my youngest son, J, shouted out “this should be called how to talk to K”.  We all laughed but then I read it again later and I realised that J had a point.  One of the lines talking about an “excited tiger” was “they fly through windows, swing from door frames, knock over chairs” and I wondered if there was hidden CCTV in my home that Jacob had access to   So many of the chapters had lines I could relate to, especially the “Happy Tiger”.

I loved this book and it has become one of those that my children often ask for.  We have learned it verbatim by now and so I only have to read half the line and the kids finish it.  We’ve also had some role playing and even K  got involved.  He pretended to be an angry tiger which as any mum of a child who has ASD will appreciate, was a moment of pure joy for me.

What books do your children enjoy?

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.

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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.

No change please! ASD Son2 and the hair tong dilemma: Can you decide?

Tania writes:

Yesterday it was my birthday and I was very pleased to receive some wave-making hair tongs to bring a spot of variety to my poker-straight locks.

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The scene of the crime

I gave them a try that evening as we were going out for a family dinner to our favourite Italian (Il Colosseo in Farnborough in case you’re interested). I was pretty pleased with the results and went to show Asperger’s Son2 (almost 14) who was, as usual, ensconced in the Technolair.

He broke off from his laptop for a moment to have a look and I could tell by his face that it wouldn’t be good.

“You look like a Disney Princess,” he said. “I don’t like it.” He gave me a hard glare and turned back to his computer.

I was, actually, rather pleased with looking like a princess, especially given my advanced years – although there is always the danger of looking a bit mutton.

This reminded me of when I (obviously mistakenly) wore some purple crushed velvet leggings- something quite different and unusual for me. Son2 pointed at them and asked, “What is that fiasco? Take them off.”

When I told him I wasn’t going anywhere and no one would see me he replied that he would see me, because, of course, that was all that mattered. I have never worn them again.

Son2, like many children with ASD, finds change very difficult and for him, this is only getting worse as he gets older. It particularly includes anything different about me. As the central person in his life, he likes me to be the same at all times. He also doesn’t like me being away, which can make life difficult.

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Don’t mention the hair…

When we got to the restaurant, me still with the dreaded waves intact, I made the mistake of mentioning to my sister-in-law, within Son2’s hearing, that he was unhappy with my Disney Princess look. This, of course, reminded him of his unhappiness and that, coupled with the noise of the restaurant, was too much. He refused to speak or to order any main course or eat any birthday cake and sat plugged into his iPad for most of the rest of the evening.

It was only near the end of the evening, when he pulled up the familiar images on his iPad of his carefully-painted Warhammer figures that he began to relax and managed to have some after-dinner mints.

I could have kicked myself for mentioning the hair when we were at the restaurant. It’s a bit like the Fawlty Towers German/war scene: Don’t mention the hair. I mentioned it once and I think I got away with it.  I got away with it in the house, but alas, the second time meant the evening teetered on the edge of disaster.

I think it illustrates how easy it is to slip up when you’re walking on eggshells most of the time. Life is not normal, even though your kids have no visible sign of disability. I wasn’t thinking about the repercussions of careless talk.

When we got home, I tied my hair back but it wasn’t enough. This morning I went into him with freshly washed and back-to-normal straight hair. He opened his eyes, looked at it and sighed happily. Everything was as it should be.

So what do I do with the hair tongs? Do I keep using them in the hope he’ll just get used to them or pack them away in their box? Help me out and vote below!

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.

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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

Labels: Love or Loathe them?

Deb writes…

Are labels a help or hindrance?  Do you love them or loathe them?  Do they change the way you or your child are seen?  Do they change the way you or your child are treated?

What about the labels given to the parents?  Oh yes, we all know they happen.  I asked a group of friends what labels they had been given by family, friends and practitioners and if they thought they impacted on the way people interacted with them.  Some of their responses made me genuinely laugh out loud but some were just a touch too close to home.  So what labels are parents given – do you recognise yourself in any of these?

Labels c. SNJThe Bubble Wrap parent.  Also known as a Cotton Wool parent.  This parent is judged as being too protective, hindering their child’s development.  They are seen as not allowing their child to experience life or not allowing their child to take normal risks.

The Bolshy Demanding parent.  Also known as the Rottweiler parent.  This is the parent who is educated and knows what the standards for services should be.  This is the parents who refuses to take “no” as an answer; the parent who will stay up all night reading the Education Act or the Equality Act so they can challenge decisions made.  This is the parent that the good practitioners admire and the bad practitioners detest.

The Competitive parent.  Also known as Oh no, here they come parent.  This is the parent that other parents dread bumping into.  The one who wants to constantly tell you just how much harder it is for them than you.  The one who makes other parents walk away from support groups believing they don’t belong there as their child isn’t disabled enough.

The Coping parent.  Also known as the Brave parent.  This is the parent who, from all appearances, seems to be dealing with everything perfectly.  They just get on with it – or so it would seem.  This is the parent who never asks for help and rarely, if ever, complains officially.

The Helping parent.  Also known as the Hindering  or Controlling parent.  This is the parent who supposedly hinders their child’s development by helping them too much.  The parent who will do “things” for their child instead of allowing their child to learn to do it themselves.

The Neurotic parent.  Also known as the Over Anxious parent.  This is the parent who looks for problems that don’t exist.  The one who refuses to accept “they’ll do it when they are ready”, the parent who thinks their child is not developing at the expected rate.

The Unengaged parent.  Also known as the Hard to Reach parent.  This is the parent that doesn’t access services, doesn’t respond to surveys; the parent who doesn’t always show up for appointments.

SuperMumAnd let’s not forget everyone’s favourite – the Special parent.  Also known as the Super Hero parent.  This is the parent who  gets told   “I don’t know how you do it”, “I think you’re amazing”  “I wouldn’t be able to do what you do” and the ever popular “only special people get special children”.

So which label fits you?  If you are anything like me, then you will have heard most of these at one time or another.  Usually I am known as the bolshy, demanding rottweiler (and yes, I was actually called that) and the coping parent.  Oh, and of course, the “Special” parent.  Which means that when I find myself having a bad time and not coping, no one quite knows what to do with me.  I had been put into a lovely little box and I fitted in there nicely – how dare I come out of it!

Often, this is what happens with our children.  They are given a label and society/family/practitioners all have different expectations of what that label means.  For example, Autism can mean “rain man”, “no eye contact” or “just naughty” depending who you speak to (and how your child presents at that particular time) but as any parent will know, our children are individuals and have their own personalities.  They also have good and bad days – why should a label change that?

We often label practitioners.  Supportive, waste of time, self-interested, my life-line, pen-pusher and the list goes on.  How often though, have you had met a practitioner and thought they were fantastic, only for a friend to be shocked because their experience had been very different?  Does that mean practitioners are individuals, have their own personalities and have good and bad days too?

So, if this applies to our children and to practitioners, then obviously this means we too are individuals with our own personalities.

Why should a label change that?

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?

 

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.

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Ten tips when your child is newly diagnosed with a special need or disability

TanGio-phone_edited-1

He’s not a condition, he’s my boy

You may have suspected, even all but known, but the moment when you finally get a confirmed diagnosis for your child is a watershed.

You may feel numb, distraught, helpless. If you had dreams or expectations for your child’s future, they’re now in tatters. It’s time to start again with a fresh set of hopes.

When your child receives a diagnosis of any special need 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.

But what practical steps do you need to take? Here are ten tips below, please add your own in the comments.

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Read SEN & Disability News (Quick before they ban disability)

The spotlight is firmly on disability in the media at the moment, with the Paralympics underway, not to mention the ATOS games as disability rights protestors demonstrate against the government’s new assessments aimed at getting people off disability benefits and into work.

It is quite a contrast, as on the one hand the country, quite rightly, celebrates its finest athletes who happen to have some form of impairment, against those, rather more everyday disabled people, who are currently living in fear that vital financial support will be removed from them in a government-ordered assessment that appears to be more akin to blunt force trauma. For a really thoughtful post about this, see my top story selection below by Polly Toynbee in The Guardian.

The government would do well to remember that our society is judged by how we treat our most vulnerable. As they sit and watch as the Paralympic athletes do us proud, I hope Mr Cameron et al, feel at least a little prick of conscience.

Take a look at the week’s stories – don’t forget to leave your own favourite too in the comments

What’s your experience of CAMHS?

Many of our children have to be referred to CAMHS – The Child and Adolescent Mental Health Service – to help manage their behavioural difficulties or perhaps if they are experiencing a difficult period of depression or anxiety.

After a very difficult Year 8, largely due to an issue with a particular teacher about whom the less said the better, we found ourselves in this position with Son2, who has Asperger Syndrome. He was referred by his paediatrician at the end of last year.

The paediatrician, it later transpired, in the battery of blood tests ordered, had not included a Vitamin D test and so missed that part of his issues stemmed from a severe Vitamin D deficiency. This was only picked up by our forward-thinking GP, when Son2’s legs began to cause him pain some weeks later.

So, we wait for the CAMHS appointment. And wait. And wait. Meantime, Son2 was finding it difficult to go to lessons and is on many occasions, unable to go to school at all, a stressful situation for the whole family.

Then eventually, an appointment arrives, SIX MONTHS after referral. My husband takes the day off and off we go. At the appointment is the paediatrician and a CAMHS psychologist who shall remain unnamed to save their blushes. Son2, predictably, refuses to speak to either of them.


We explain Son2’s issues, as the paediatrician yawns through the whole appointment, then takes a phone call. At an appointment we have waited six months for. I studiously ignore him. The psychologist agrees to prescribe a trial of a particular medication and says she will call the school to speak to his counsellor there before we get it filled. However, to the best of my knowledge, she does not and we are left with an unfilled prescription a week later, still waiting to hear back from her. I call and leave a message. No response. So, I decide to get the prescription filled although Son2 will only agree to take it after I take him back to our GP who explains to him the effect it will have on him and that he will soon start to feel better, something, presumably, the psychologist should have taken the time to do.

Within a couple of weeks, indeed Son2 is feeling better and even manages to go to the local shop by himself for the first time in a year. But there is still no word from the psychologist and we are coming to the end of the bottle. I call the GP who agrees to prescribe a further bottle, even though this is supposed to be a monitored trial.

Off we go on holiday, where Son2 has a couple of relapses but is generally much better. When we return, there is still nothing from the psychologist, so I call my GP again to ask who should be monitoring Son2 as we have heard nothing, nor have we received a follow up appointment. She checks her screen and has a recent letter scanned in that says Son2 had been referred to the wrong county sector of CAMHS and had been re-referred to a different local region. They had not bothered to cc us in because, of course, as the child and his parents, we are the least important people in this process, it would seem.

I am incensed. And as David Banner used to say just before he turned into the Incredible Hulk – don’t make me angry. You wouldn’t like me when I’m angry.

I call the new department to find out what is happening and, to avoid my call going ignored again, I  pass on to the lady who takes my details that I am also co-chair of the local parent-carer forum and a response would be appreciated, as I am extremely unhappy at this rather careless administration when they are dealing with a vulnerable child who has been prescribed some serious medication.

An hour later, a lady calls me, very concerned that I shouldn’t be complaining about them and I assure her that it’s not them at fault, but the other CAMHS section. We now have an appointment for 25th September. So, because of this mistake in referral Son2 will have had three months with no monitoring for a child who was only put on an initial trial of an SSRI.

It doesn’t bode well for the future for an integrated health, education and care plan if they can’t even figure out where you should be referred. And at the heart is an autistic boy who has been suffering since the end of last year. Parents should not have to chase for information, it’s very distressing, because it makes you feel very alone and insignificant.

Because of my position, I happen to know the head of CAMHS in our county (a very sincere person, in my experience) and I emailed her to tell her about the whole sorry tale. As I expected, she was horrified and apologised, assuring me she would ensure Son2 received the right treatment and that she would also take steps to make sure this did not happen to anyone else.

However, I am not sure my experience of CAMHS, in any county, is particularly unusual, or even especially bad, and I would be interested in hearing your story too.

August’s top bank holiday SEND stories

After a two week break, the Special Needs Jungle weekly curation of the best of special needs posts is BACK! I’ve tried to include stories I tweeted while I was away in Italy being subjected to torture by invisible mosquitos. My top holiday tip if you have teenagers like mine is to make sure your holiday home comes equipped with free wifi for those inevitable downtimes, so you are never plagues with cried of, “I’m bored!”

My boys still have another two weeks and a bit weeks off, and I intend to spend some of it taking them to our new gym, as I’m fed up of us all being locked in our little corners of the house on our respective computers (though at least I’m doing actual work). The gym is brilliant with a huge pool and great facilities, including a spa (for me, obviously) and, of course, free-wifi so that Son2 can sit pedalling the cycle machine while playing on his iPad. Well, it’s a start and a compromise, but at least part of him is moving.

Have a fab August bank holiday weekend and fingers crossed for good weather if you’re planning a barbecue or a last dash away! Next week – the paralympics!

Special Free Schools – is it worth it?

A few weeks ago, I was invited to attend a conference about the formation of special free schools. I couldn’t make it myself as I had other meetings, but Claire Louise, from the popular and award-winning, A Boy With Asperger’s blog, kindly agreed to step in and attend for SNJ. Here’s her report:

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Is it worth the hassle (a 100+ page bid and one hell of a load of work) that comes with starting a Special Free School?

There are many factors that need careful consideration, as well as a number of different circumstances each need applying to. For example, Is the school already up and running, therefore requiring just “Free School” status? This could apply to any school (independent & non-maintained) this excludes that of state schools who can instead apply to become academies.
Maybe you are considering starting up a Special Free School from scratch. It may only exisit on paper or an idea in your head. Maybe its because there is a gap in SEN provision that needs filling, therefore an idea of a Special Free school makes sense.

So as not to confuse anybody (as we all know these things can be mind boggling) I’ll therefore take this one step at a time and will try to be a clear as possible as I do.

Firstly, What is a Special Free School?

A Special Free School is one that is funded by the Government yet run independently. So, you may ask how these are any different from independent schools? Independent schools are not reliant on the government for funding, instead these schools are funded by a combination of tuition fees, gifts, fundraising or in some cases income investments (for profit organisations). Non-maintained schools are normally run by not-for-profit charities, approved by the secretary of state to take children with statements of SEN.

So, What must a Special Free School Provide & how must it be run?

  • Provide education for children assessed as needing statements of SEN between the ages of 5-19 years of age.
  • Provide education to a minimum of 5 children
  • Only teach children with SEN or those being assessed as having SEN
  • Have regard to the SEN Code of Practice
  • Provide a curriculum that is one tailored to an individuals needs
  • Run by an acedemy trust (Charitable trust/not for profit)

Admissions to Special Free Schools will continue to be made via the LEA who retain responsibility for assessing a childs SEN

Important factors…

Applications must only be made by those schools that are new (meaning ones not already funded by the state as already mentioned above)

So… Who can set up a Special Free School?

Well, I should really rephrase the above question to, “Who can apply to set up a Special Free School?” Because the answer is just about anybody can, but this doesn’t mean to say your application will be approved.

This isn’t just a case of knowing that there is a gap in SEN provision (though it helps) groups of parents, charity groups etc,will struggle unless they have a member of their group who has strong knowledge of the education system (basically how to run a school on a senior level) Head teachers and board of governors make a good starting block. From what I have heard, many parent groups have formed wanting to start Special Free Schools but due to their lack of knowledge on the running of a school (including costs) they have therefore fallen at the first hurdle. This isn’t just a case of coming together, forming a group and filling in an application.

Parents/groups/charity groups looking to apply to open Special Free Schools need to do their homework and should realise this isn’t the only option (setting up fully independent schools may be a better, if not slightly easier, process). To set up a Special Free School, groups should appoint a director(s) and as mentioned, preferably someone who has some inside senior knowledge on the running of a school and importantly the likely cost that comes with it.

Writing the bid is also a far from easy task, this normally exceeds a 100 pages and no stone should be left unturned! Only then is there a chance you will make it to the “Interview Stage” The Governement has set up the New Schools Network which is there to help groups throughout the process and should really be your first port of call.
Understandably, given the state of the SEN system at present (the fact that there just aren’t enough special schools in most areas and there are huge gaps in provision) many groups, especially those consisting of parents of children diagnosed with SEN, will be looking into Special Free Schools. However, I feel that when looking more closely, they may well discover things are much more complicated then identifying the need for a school, finding a site and opening one. I’m not saying people assume its easy, just that it seems much harder than I first thought, plus it may not be all its cracked up to be (just read on to see where I’m going with this.)

So, what about existing independent schools? WOuld it be beneficial for them to apply for SFS status? It sounds so considering these will continue to be ran independently yet receive state funding to do so! What’s the catch? Of course like everything there is one!

Special schools that are already setup and established will not be provided with the start-up funding However, there are some exceptions, such as expanding pupil capacity -but there are still no guarantees.

The next big factor is admissions. Once Special Free School status is granted to those independent schools, the LEA will have the right to make them take children with varying needs, even ones the school does not cater for. Therefore this means that independent schools that for example only provide education for children on the autism spectrum, will have to take children with other needs, social, emotional, more complexed SEN or varying disabilities. For me, this is a massive issue, one that would make me consider such a change much more carefully if I was making such a decision about an independent school.

My son is in an independent special school just for children with autism and Asperger’s. The school teaches in small groups and have a high pupil-teacher ratio. I would honestly worry if it was to convert to that of Special Free School status. I’m not being selfish, I just feel that by admitting children outside this status of SEN may result in all children not having their needs met, not mentioning the school reaching over-capacity. I also worry that dependent on how many independent schools within my postcode convert to Special Free School Status, the local LEA may try to move my child in order to save money (his at an independent out-of-borough school).

So… with the bad points out of the way, are there any good ones? The only ones I can actually think of is that of the reduction in tribunal cases. It’s quite simple really…if independent special schools convert to Special Free Schools, then the number of parents bringing cases to the SEN tribunal will fall. LEAs will be much more willing to send a child to the school as it won’t be charging the independent fees it once was. This would also mean that more children would possibly be educated within their borough. For me, neither outweigh the issue of admissions (this for me just creates worry).

Whoever you are, if a Special Free School is something you are seriously considering, there are important issues to consider. One of the biggest is that of the pending SEN reforms. With the future of SEN provision still up in the air, is now the right time to be making such huge decisions? The Green Paper will mean a complete SEN overhaul. This includes the scrapping of the SEN Statement and replacement with the Education, Health and Care plan taking its place. Other factors include everything from the way a child with SEN is assessed, the funding a school will receive and the possibility of a personal budget. We don’t even know what the new EHCP will look like and if the social care part will hold any legal and statutory duty whatsoever.

Can’t this government do one thing at a time? It makes no sense to me to open Special Free schools when the way such children are provided for remains so unclear.

Okay, so heres the nitty gritty on the issue of Special Free School funding:
As far as I can make out, there is no set capital – this is therefore allocated on a project by project basis. The secretary of state must take into account the estimated or “potential” costs of each individual group’s bid. As already stated, there is no start up funding for existing schools, only new schools (special circumstances will be given consideration.)

Do your homework, this is a government-funded scheme which will mean that they want to see low costs and good value for money!
Remember, the government is still consulting on long term funding for special schools. As it stands, the interim funding arrangements put in place is to receive base-funding level funding of £10k per place (note there may be additional funding from some LEAs dependent on an individual’s needs. Well, let’s be honest, 10k isn’t much, especially for a child with complex needs who requires a number of high-level provisions put in place like SLT and OT.

Lastly, Special Free Schools, like other free schools, should receive a standard grant to compensate for services that state maintained schools recive from the LA.

If considering a Special Free School, remember these only cater for children aged 5-19. This is regardless of the pending EHCP, which covers children aged 0-25.

So, there you have it! I hope I didn’t confuse you!

Thanks to Tania  at Special Needs Jungle for asking me to attend the New Schools Network forum which enabled me to write this report. Please visit the New Schools Network for detailed information and advice on Special Free Schools and Free Schools

Claire Louise (A boy With Asperger’s)

I’m up for most inspiring blog in the Mad blog Awards 2012
Please vote for me (A boy with Aspergers) at http://www.the-mads.com/vote.htm

Find me on twitter @clairelouise82

The week’s scoop on special needs and disability stories

Today (Friday) is a day full of SEN green paper meetings for the Surrey pathfinder for me and tomorrow it’s the long-awaited Towards a Positive Future SEN conference for which there are still a few bursary places available for parents.

All that’s left is to choose what to wear – and as I’m not very good at this sort of thing, it’ll probably be the most challenging part of the whole thing. Next week I’ll be at the finals for the BritMums Brilliance in Blogging Awards for which Special Needs Jungle is a finalist, so I expect you’ll find me searching the rails at the Posh Dress designer exchange shop in Farnham where they always seem to have the right thing that actually fits me.

Family wise we’ve had a week of CAMHS & cardiology visits for Son2. The consultant paediatrician spent the CAMHS session yawning and answering his phone, but at least the psychologist was sensitive and attentive and we had a satisfactory outcome, although the six month wait left a lot to be desired.

So, on to the week’s stories. Check out, if you haven’t seen it, the Pathological Demand Avoidance article by Deborah Rourke – it’s had hundreds of views this week and is well worth a read. Also have a look at my post about Son2’s raspberry Pi computer. The Padawan has become a Jedi…

Have a great weekend and don’t let the weather spoil it!

Jubilee round up of special needs stories!

Me with Sons1 & 2 

Ah, the Jubilee weekend is upon us. We’re having a barbecue with our lovely neighbours, so I hope it doesn’t rain. They’re moving soon – I just hope the new people love walking our dog as much as the Smiths do! I’m going to try to have the weekend off and do no ‘computering’. This may be unpleasant torture though… we shall see. I still have my iPad. Plus it’s my birthday on Wednesday. I’m hoping my kids on half-term will wait on me hand and foot. Well, you can dream!

Have a fab bank holiday weekend, all, and thanks for your continued support for Special Needs Jungle.

SEN – The Next Steps – My views & Meridian Tonight feature

So, there’s been much furore today about the headlines for proposals that  450,000 children be ‘struck off’ the SEN register. This is a bit of a stupid headline, to say the least. I was interviewed by Meridian Tonight (clip at end of post) about it for my views as a parent of SEN children.

The story was linked to this announcement from the DfE today that continues on from the SEN Green paper on Special Needs and Aspiration, that was trailed last week. It seems that any story about children with special needs is pounced upon by the haters and the critics. Oh, those bad teachers. Oh those terrible parents. Oh those benefit scroungers. I can guarantee you that none of those people who make moronic comments like that are either a teacher or have a child with special needs, which means that they should, quite frankly, shut up.

The key points in today’s “Next Steps” announcement were:

  • The new Education Health and Care Plan (EHCP)  will eventually replace the statement and will last from birth to 25 for those children who need it. The EHCP will be a “single assessment process, … ensuring that families have confidence that all of the different local agencies – across education, health and social care are working to together to meet their needs. This will stop parents having to have to undergo repeated assessments with different agencies.”
  • Personal budgets: all families with an approved education, health and care plan will have a legal right to request a personal budget, if they choose.
  • Joint commissioning: LAs and clinical commissioning groups would have to put arrangements in place to ensure that services for disabled children and young people, and those with SEN are planned and commissioned jointly.
  • School choice: parents whose children have an education, health and care plan would have the legal right to seek a place at any state-funded school of their choice – whether maintained, academy, Free School or special. LAs would have to name the parent’s preferred school so long it was suitable for the child, did not prejudice the education of other children or did not mean an inefficient use of funds.
  • Local offer: all LAs would publish a ‘local offer’ of  support, so parents would know exactly what is available instead of having to fight for basic information.
  • Mediation and the tribunal and children’s right to appeal to a tribunal: introducing mediation before Tribunal for disputes and trialling giving children the right to appeal if they are unhappy with their support.
What some sections of the press jumped on was that the statement from the DfE mentioned an OFSTED report from 2010 that claimed many children were wrongly identified with SEN. I touched on the reasons for this in my post on Saturday, so you can read it there. But to say that this happens often or even routinely is a huge exaggeration.
It is quite right that the government should seek to provide the most appropriate provision for children whether they have actual SEN or whether they need nurture groups because of family difficulties. If they can bring forward the funding and expertise to put this in place, then they should do it as soon as possible.
What they should NOT do as soon as possible (ie, this summer) is think that their policy can be informed by any results from pathfinder trials of the EHCP. In Surrey, this is still at a very early stage – ie, we, at Family Voice Surrey, are not even sure that any families are yet trialling it, so to have any firm conclusions drawn by this summer is optimistic in the extreme.
Tomorrow, Surrey has another day-long EHCP meeting that myself and my FVS colleague, Angela Kelly, will attend with great interest.
What must NOT be done is for these plans to be rushed through for political reasons – we are talking about the futures of some of society’s most vulnerable and if you’re going to shake up the system it should be done properly, in a considered manner.
Anyway, now for the light relief. Christine Alsford from Meridian (where I cut my TV reporter teeth) came over and filmed me and Son2. Son2 only agreed if he could be in his BodySox and the crew thought this was a genius idea.  What do you think?

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  

My pick of the posts about special needs this week

I’ve come across lots of interesting stories this week so here’s my list of the cream of the crop of news, blogs and, of course the week’s stories from Special Needs Jungle. Have a great weekend – let’s hope the rain holds off.
 As usual, if I’ve missed yours, add it to the blog comments to share with others.

Catch up time: Read the special needs stories you may have missed

Tania Tirraoro, Special Needs JungleA diverse list of stories and posts this week, but all interesting reads. As ever, leave your own story link in the comments if you’ve written or spotted something interesting that’s not mentioned here.

On a purely personal note, thank you so much to anyone who nominated me for the BritMums awards. I may have mentioned (just) a few times that the Special Needs Jungle blog has been shortlisted!  It’s one of 20 blogs in the ‘CHANGE’ category and now needs votes to go through to the final stages. If you have time, I’d be really grateful if you could help it along. It’s in section 3, number 15 at this link.

And after that quick promo, here’s the special needs story round up:

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.”  

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

 

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:

Poll results – Should children with Asperger’s automatically be statutorily assessed?

Last year I published a poll on this site asking whether people thought children diagnosed with Asperger Syndrome (quick, use the term before it’s abolished!) should automatically receive a statutory assessment by the local educational authority.

I posed three potential answers:

  1. Yes, because teachers aren’t trained to spot underlying difficulties
  2. No, we should just see how they get on
  3. No, we should trust the school to decide what level of help they need

Now, I assume that most of my readers are parents with SEN children but there are also readers who have a professional interest in SEN, so I admit that the results may be skewed somewhat. Having said that, a whopping 96 per cent of respondents thought that AS is so complex in its presention that children with that diagnosis should receive a professional, school-based assessment to determine their special needs.

This isn’t to say that they should all be statemented (or get an EHC Plan as it will be), but most respondents believed that it is important to understand what their needs are and how they can be met to level the playing field, giving them an equal chance of success at school and beyond.

3% though we should see how they get on and just 2% thought that teachers were best placed to decide the level of help required. There were more than 150 responses.

I am a firm believer that school success and success as an adult does not depend on academic achievement alone. We all hope that our children, whether they are ‘normal’ or whether they face additional challenges, will grow up to be rounded, socially adept individuals. Even in this age of web interconnectedness, knowing the correct social response in a face to face meeting is still vitally important. We are, after all, social beings.

I know this only too well from my own sons. Even though our eldest is incredibly bright, we could see that he had many social difficulties and these, in turn, affected his school experience and academic achievements.  We did not want him to turn out to be an angry alienated genius and, thanks to interventions, support and the right school, he won’t be. Without an assessment that I fought for and drove forward, we might still be asking ourselves.. but he’s so bright.. why does he do this or that, it makes no sense.. (I’ve talked about his issues previously, with his agreement, now he’s a teenager I have to be careful what I say).

I say whatever you call Asperger Syndrome in the future, and whatever you replace statements with, when parents suspect their child has social difficulties they should always raise the issue with teachers and do their own research as well.

Some difficulties experienced by children with high functioning ASD can seem obscure and hard to verbalise. Yet if they go unaddressed, they can end up having a long-term negative impact on a child well into adulthood. I believe that every child on the spectrum should have an Ed Psych or Outreach assessment so that teachers who are not experts in autism (nor would most claim to be) can be given help to ensure that every pupil they teach has a fair chance of a decent learning experience.

SEN Stories in the news this past week

Recap of SNJ posts and other news about SEN this week:

SEN stories in the news this week

It’s been a busy week of posts on Special Needs Jungle. I’ve listed a round up below along with some other SEN stories of interest in the news. Next week, I’ll be answering questions about SEN on TheSchoolRun.com – why don’t you join us?

I subscribe to many RSS feeds bringing news stories about SEN, disability and general education. If I should subscribe to your RSS from your site or blog, leave your weblink in the comments.

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.

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 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

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)

SEN stories that caught my attention this week.

Here are some stories I found interesting that touch on Special Educational Needs in the press this week. To get these and other posts delivered to your inbox, subscribe to this blog on the left.

1-2-3 Magic – the discipline system that saved my sanity

When you have children on the Autistic Spectrum, finding an effective solution to help with discipline is not easy. Out two AS boys are high-functioning but often did not realise that they had reached the limits of what was acceptable behaviour. Our sanity as parents was sorely tried at times until I came across a book recommended to me by Nancy Williams of The Studio ADHD Centre near Dorking. Nancy does amazing work with the young people that come to her, including our eldest who, at the time, did not have a full diagnosis.

The book in question was 1-2-3 Magic: Effective Discipline for Children 2-12 (Advice on Parenting)
by Thomas Phelan. If you’re thinking, oh it’s just counting, and that doesn’t work with my kids, then you might be surprised to find, as we did,  you’ve been doing it the wrong way.

The system is all about getting control back in a calm and effective manner and helping your children understand that you set the boundaries, not them. In order for it to work, you MUST be consistent, and carry through consequences religiously. This means consequences must be proportionate and deliverable.

We explained to the boys, as the book tells you to, that we were using a new system for discipline, what it entailed and that if we reached ‘three’ there would be consequences that they didn’t very much like. This included removal of privileges, electronic gadgets, TV time, Xbox for a set period and it would be stuck to. Whining about it would result in no discussion, just another count. Well, it was worth a try and, although I will let you read the whole system for yourself in the book, I will say it certainly worked for us.

In fact, when the boys started up and my head felt like it was going to burst, instead of losing control, I would just say calmly, “Ok, that’s a one.” No discussion, no further attention paid to the culprit while he digested the number. I felt instantly back in control. The decision to behave or not was his and he knew if he continued, two would follow one as surely as night follows day. After a few goes, it began to work so well that we rarely got to three.

It works because it is unambiguous. Children know what it means and they know you mean it and will follow through. This is good for children on the spectrum who need continuity and stability. I can’t say if it would work for children whose autism is more profound as I only have experience with my own boys. But it certainly has the potential for great succcess with Asperger’s and ADHD kids. And it works for parents too. It gives you back control without being overbearing. It helps you draw a line in the sand: this behaviour is acceptable, that behaviour is not. I would never claim to be an expert in behaviour, I’m just recommending to you what worked for us.

These days we don’t have to use the system much but it still works. The other day, my almost 14 year old was driving me insane. Suddenly, I remembered the 1-2-3 Magic system. “Okay, I said, that’s a one for you.”

He stopped what he was (annoyingly) doing and looked at me. “Are you counting me?” he asked incredulously.

“I think you’ll find that I am,” I replied, in a mild tone that did not reflect how irritated I felt inside.

“I’m thirteen!” he said. I shrugged and raised my eyebrow. He looked at me some more, then went off to do something else that was not annoying. Amazing, and proof that a system well-implemented and consistently applied can work.

The book has developed into a series. There’s a 1-2-3 Magic for Teachers: Effective Classroom Disciplines , workbooks and one we’ve just bought, Surviving Your Adolescents: How to Manage, and Let Go of, Your 13-18 Year Olds that I will report back on. It’s hard to know with our Asperger’s boys what behaviour is as a result of their AS and what is just teenage-ness. I am confident this book will give me some tips that I will be able to apply.

I’ve just found Thomas Phelan on Facebook and Twitter and he also has a newsletter.

Autism diagnoses are more common in an IT-rich region.

A new study from Cambridge University has for the first time found that autism diagnoses are more common in an IT-rich region.

The Medical Research Council (MRC) funded study, published today in the Journal of Autism and Developmental Disorders, has important implications for service provision in different regions and for the ‘hyper-systemizing’ theory of autism.

Professor Simon Baron-Cohen, Director of the Autism Research Centre (ARC) at the University of Cambridge, led the study (which was conducted in the Netherlands) with Dr Rosa Hoekstra, a Dutch autism researcher based at ARC and The Open University. The researchers predicted that autism spectrum conditions (ASC) would be more common in populations enriched for ‘systemizing’, which is the drive to analyse how systems work, and to predict, control and build systems. These skills are required in disciplines such as engineering, physics, computing and mathematics.

The team had previously discovered evidence for a familial association between a talent for systemizing and autism in that fathers and grandfathers of children with ASC are over-represented in the field of engineering. The team had also previously found that mathematicians more often have a sibling with ASC, and students in the natural and technological sciences, including mathematics, show a higher number of autistic traits.

The researchers tested for differences in the prevalence of ASC in school-aged children in three geographical regions in the Netherlands: Eindhoven, Haarlem, and Utrecht-city. The region Eindhoven was selected because it is rich in IT having the Eindhoven University of Technology there, as well as the High Tech Campus Eindhoven, where IT and technology companies such as Philips, ASML, IBM and ATOS Origin are based. (The Philips factory has been in Eindhoven since 1891. Since then, the region has attracted businesses in IT and technology.)

The growth of the High Tech Campus Eindhoven has led to Eindhoven becoming a major technology and industrial hub: 30% of jobs in Eindhoven are now in technology or ICT, in Haarlem and Utrecht this is respectively 16 and 17%.

The two control regions were selected because they have similar size populations and a similar socioeconomic class. Schools in each region were asked to provide the number of children enrolled, the number having a clinical diagnosis of ASC and/or two control neurodevelopmental conditions (dyspraxia and ADHD). The participating schools in the three regions provided diagnostic information on a total of 62,505 children. The researchers found school-reported prevalence estimates of ASC in Eindhoven was 229 per 10,000, significantly higher than in Haarlem (84 per 10,000) and Utrecht (57 per 10,000), whilst the prevalence for the control conditions were similar in all regions.

Simon Baron-Cohen commented: “These results are in line with the idea that in regions where parents gravitate towards jobs that involve strong ‘systemizing’, such as the IT sector, there will be a higher rate of autism among their children, because the genes for autism may be expressed in first degree relatives as a talent in systemizing. The results also have implications for explaining how genes for autism may have persisted in the population gene pool, as some of these genes appear linked to adaptive, advantageous traits.”

Rosa Hoekstra added: “We need to conduct a follow-up study to validate the diagnoses and to test the alternative explanations for the elevated rate of autism in Eindhoven, including the possibility that children with autism may more often remain undetected in the two other regions. These results are important findings in the field of autism epidemiology, since they suggest regional variation in autism prevalence. In our follow-up study we plan to study the causes of this variation in more detail. This will help local authorities plan services appropriately for the number of children with autism.”

Read the research here http://www.autismresearchcentre.com/docs/papers/2011_Roelfsema%20et%20al_autism%20prevalence%20NL_JADD.pdf

Find out more about the Autism research Centre here:  http://www.autismresearchcentre.com/

Education and Training (Young People with Autism) Bill introduced.

A private member’s bill has been introduced in parliament to make provision for the education and training of young people with autism and Asperger’s syndrome and to ensure that work opportunities are provided for them.

The bill is being sponsored by Conservative MP for Ilford North, Lee Scott.  Introducing the bill, Mr Scott said, “One of the biggest worries for parents who have children with autism, Asperger’s or any other special needs is what will happen when they are no longer here. Will the young person, when they become an adult, be able to look after themselves? Will they have gainful employment? ”

He said that, according to the National Autistic Society, there are more than 350,000 working age adults with autism in the UK. NAS research has found that, whilst many people with autism want to work, just 15% of adults with autism are in full-time paid employment and 9% are in part-time employment.esearch shows that 79% of people with autism on incapacity benefit want to work, but need some support to get into work and retain employment. One in three people with autism is without any financial support from employment or through the benefits system, with many reliant on their families for such support. In a study carried out by Research Autism in 2008 for NAS Prospects London on the experiences of employing people with autism, seven in 10 employers questioned had had a very positive experience of employing people with autism, Asperger’s or other related conditions, and said that they would recommend it to others.

Mr Scott praised an organisation called Kisharon, which runs a printers and a bicycle repair shop staffed solely by young people with autism, Asperger’s or other special needs. “Together with a group called Interface, which is one of my local groups serving young people with autism, Asperger’s or any special needs, and the London borough of Redbridge, with private backing—I am sure the Treasury will be pleased to hear that, as there will be no financial impact on the Treasury—they are looking at how we take matters forward.I have had meetings with leading companies where we plan to run a pilot scheme that will allow them to employ young people and for the young people to have training through local authorities so that they can achieve what they deserve—the best possible future.”

Mr Scott went on to cite one young man who found it difficult to interact in the workplace. “An employer took this young man on, although there were difficulties. There were days when perhaps the young man took offence or had a problem with things that others may not have, but that firm took that into account and worked with that young man and he has now been there for some three years and is a valued employee.”

He went I also want to consider how this scheme can be rolled out, such as accommodation provision and assessment of skills such as computer or IT ability. “We know only too well that many young people with autism or Asperger’s syndrome are brilliant with computers and IT, but may not have great communication skills in the workplace. There is no reason why they cannot work from a satellite centre or from home,” he said.

The bill is set for its second reading debate on 20th January 2011.

Groundbreaking dance DVD to help kids with autism.

Anna Kennedy is an inspirational figure. She is the mother of two sons, one with autism, one with Asperger Syndrome. That’s tough enough on its own but, unable to find the right educational solution for her autistic son, she and her husband Sean fought endless bureaucracy, unfavourable odds and the need to raise a large sum of money and succeeded in founding their own school in London that could meet the needs of children like theirs.

The school, Hillingdon Manor School has since gone from strength to strength through Anna & Sean’s hard work, determination and the unstoppable desire to turn no’s into yes’s when it came to their children’s futures. It is now the largest facility for educating and supporting people of all ages with autism in Europe.

Anna has now developed a groundbreaking project, entitled “Step in the Right Direction”. It features a dance DVD, tutorials and interviews, offering a clear insight into an autism spectrum condition (ASC). It’s being launched at the British Institute of Learning Disabilities conference on Friday 4th November in Birmingam.

The initiative marks the fulfilment of a life-long dream for Anna, now a leading autism campaigner, as well as the director of the Hillingdon Manor School and founder of the charity Anna Kennedy online.com

Anna said, “Research and teaching experience shows us that autistic children need multiple types of stimulation to process information. Music and dance help the brain to organise itself. Hearing, listening, processing and repetition help children with autism build new learning pathways. We think this is a really fun and inventive way of connecting with and helping children develop coordination and flexibility and in the process build their confidence and improve their communication skills. With more and more young people affected by autism, I felt this was the right time to launch such a project.”

Produced in association with the world famous Pineapple Performing Arts School in London and the students from Hillingdon Manor School, the DVD features a special guest interview with Britain’s Got Talent finalist dancer James Hobley, plus the star of Sky 1 Pineapple Dance Studios, Andrew Stone. The DVD has already generated a huge amount of interest, particularly among parents, families and carers of those with autism.

Founder of the iconic Pineapple Dance studios Debbie Moore said: “This is a truly wonderful and highly imaginative dance production; a must-have DVD for parents, carers, mainstream and special schools, after-school and youth clubs.”

Every child is different but experts agree that early intervention helps with development and dance aids children with autism. The DVD’s carefully structured dance and exercise routines, ranging from freestyle to” poppin’, lockin’ and tuttin’”, can also help them connect better with others.

Tutorials feature some of the country’s leading dance experts, including break-dance tutor Jade Flannagan and Pineapple Dance Foundation’s Maggie Paterson. They are designed to help young people develop co-ordination and flexibility, change rhythm and speed, level and direction, use varied dance and aerobic exercise sequences, identify parts of the body and stretch them, improvise dance and exercise movements to rhythms and participate in important cool down activities.

Priced at £7.99 + P&P the DVD (approx running time 100 mins) can be ordered at www.annakennedyonline.com

Ritalin, talking therapies and what I think our kids really need…

The Health Minister, Simon Burns has said that the chief medical officer and the NHS medical director are planning to write to clinicians to remind them of the full range of NICE guidelines on conditions—including ADHD—that affect children’s mental health. It came in response to an adjournment debate on 25th October 2011 called by MP Pat McFadden on the rise in prescriptions for children of the drug methylphenidate (Ritalin, Equasym etc) used to treat people affected by the symptoms of attention deficit and hyperactivity. These symptoms affect behaviour and the ability to learn and as well as being found in ADHD, are also co-morbid in young people with autism, Asperger Syndrome and other similar development disorders.

Mr McFadden made a plea for the Minister to carry out a proper, comprehensive review of the use of these drugs involving professionals from the medical, psychology and teaching fields, as well as the families of those who have been prescribed the drugs. He asked the Minister, “Will he commit his Department to carry out a proper research project into the use of the drugs, including the age of the children receiving them? Secondly, in the light of the huge growth in prescriptions, will the Government carry out a proper review of practice in the field, as called for by the Association of Educational Psychologists, before the new guidance comes into effect in 2013?”

Mr Burns said he himself had a family member who was successfully being treated with Ritalin. “Across hospital and primary care, the prescribing of drugs for ADHD increased by around 12.5% between 2007 and 2010, the latest four years for which data are available, and by around 6% in 2010 alone. Prescribing in primary care alone increased by 22% in that four-year period, reflecting a significant shift in prescribing activity from a hospital setting and into primary care. Looking back further, one sees that prescribing in primary care has tripled in the past 10 years.”

However he pointed out that the cost of doing nothing was too great for those affected and that, if left untreated, mental health problems can lead to low attainment in school, antisocial behaviour, drink and drug misuse, worklessness and even criminality in adult life. He said, “Getting things right for children and their families—through a broad range of support to promote good mental health from the start of life, through the school years and into adulthood—can make a real difference to young lives.”

Yesterday, the government announced a further £32 million pounds for child mental health services, including talking therapies. While this may seem like a lot, when split across the country, it might not go as far as hoped. Talking therapies take time and require therapists qualified in techniques such as cognitive behavioural therapy, particularly in its use with children. I believe that this issue should not be looked at in isolation. It is an educational, parenting and medical issue all at the same time.

In educational terms, it should be looked at whether the right learning environments are available to teach children for whom sitting still in a classroom is impossible. There is plenty of practical advice available giving tips and strategies to help manage students with ADHD and help them thrive in a regular school environment. What is needed is the will to implement them consistently at a classroom level. That takes teacher training. And when I say consistent – that is key. One of my sons one year in mainstream had a teacher who managed him well. The next year he moved into a class with an older teacher who didn’t even realise he had a diagnosis, let alone the will to adapt her teaching style to help him. It’s no use having teaching assistants who are just mums looking for a part-time job. If they are to work with learning disabled children or those with attention or hyperactivity issues that may be clouding their true ability, the TAs need to be well trained. Some are and sadly, some aren’t. That’s not good enough. Our ASD sons were both treated for a while with medication. But they no longer need it because they are now in the right educational setting. This is not only my view, it was  the opinion of their paediatrician, an experienced and well-respected man.

Parenting wise, parents who have children with difficulties need support. They need to learn techniques to manage their children effectively and I’m not talking only talking about parents from lower down on the social scale. Just because you have a good job or a good education does not mean you come automatically equipped with the parenting skills needed to cope with life in a household where there is constant stress and discord because of the behaviour of one of your children. I know, I’ve been there and I know plenty of other middle-class good parents in the same boat.

Medically, and here we come back to Mr McFadden’s debate in parliament, we need GPs who don’t fob parents off, and we need specialists who listen to parents and who have the knowledge of and access to, up to date research and therapies pertaining to children’s mental health. They need to be able to work with parents, schools and CAMHS together to be able to put the right package of treatment together for the child concerned. Yes, it takes time and money – well they’ve just given £32 million, so there’s cash to be spent. But when you are talking about a child’s future you cannot take a piecemeal approach. Questions such as why is the child having the behavioual isssue – is there an underlying medical condition? Are they dyslexic? Do they have a speech and language problem that has gone unrecognised? A holistic approach is needed. Many of children like these turn out to be gifted in one area or another and need to be given the chance to let their talents find a way to the surface. If nothing else, in the 21st century and with all the research already available it should be within our power to help some of our most vulnerable people to thrive.

Lastly – and this is key. the media should stop being so damn judgemental of parents and children with behavioural problems and yes, Daily Mail, I’m talking to you and your readers who are so quick to condemn and who publish ill-informed opinions and blatant untruths about this already embattled section of society. I believe the reason the Health Minister, Mr Burns, gave such a thoughtful and informed response was because he himself has personal knowledge of the issues. Which just proves the adage about walking in other people’s shoes.

Part Two, SEN conference, Towards a Positive Future, Review

This is the second part of the SEN conference review in Newbury, leading, logically enough from … Part One

Former Head Teacher, Charlie Mead is a consultant Child and Educational Psychologist, advising schools, the NAS and health and prison services about working effectively with young people with complex needs. He has a wealth of knowledge and experience in the field of helping children with special needs and makes the analogy of how the system is like an egg timer – with all the resources at the top not being able to filter down to those who need them at the bottom – ie, children. He spoke of how he had introduced nurture groups to a school in Birmingham where children with special needs were taught, mainly in the same classroom without the need to move around the schoo0l. They were given the help they needed and this had greatly improved their outcomes and allowed them to participate and be included within the mainstream of education. This is a fascinating idea that, with a some effort and will, could be adopted by every school in the country. It deserves greater public attention than it so far seems to have had.

One form of ‘hidden disability’ I have not dealt with before is that of acquired brain injury – that is, an injury not present at birth that occurs by illness or accident during childhood. Often these injuries present in a similar manner to developmental disorders. Every year it is estimated that at least 50,000 children and young people acquire a brain injury. Often, it is not until some time after the injury that a connection is made between a behavioural or learning deficit in the young person and the injury or illness that previously occurred. Research shows that 50% of those in custody have some kind of ABI. Louise Wilkinson, Training Manager of the Child Brain Injury Trust spoke at the conference of the issues faces by people with ABI. Her charity has been working to educate teachers on how to deal with such children. The charity is holding a conference in 2012 on the issue.

Finally, conflict resolution & NLP coach, Ian Ross and Lynne Kerry of Vievolve held a session about how to approach and deal with conflict and negotiations. They explained how to negotiate on ‘interests’ rather than ‘positions’ and how to maintain your cool when involved in a difficult discussion. One of the pieces of advice was to put yourself in your ‘opponent’s’ shoes and think what they are thinking. This was exciting to me as it was exactly how I approached applying for my sons’ statements. I considered the arguments that the LEA might come up with for not giving the statement and in my application, I ensured that I had a convincing answer for every possible reason to deny me what I wanted to achieve. The company offers NLP coaching to businesses and individuals and has a number of courses at its South Oxfordshire venue coming up.

All in all there was great concern over what the future for special needs might bring. It is clear that the green paper is far from perfect and that changes will need to be made. But it is heartening that there are plenty of people who are concerned with SEN that do not forget that the child is at the heart of everything. It is impossible to ignore the fact that money is always an issue, especially in these times, but our priority must surely be with the most vulnerable and childrenwith special needs are undeniably that.

The site for the conference, where the transcript of the presentations will soon be posted it here: http://www.towardsapositivefuture.wordpress.com. Another event is being scheduled for next April.

Links for this post:

Charlie Mead: http://www.cpsforchildren.com  Twitter: @CharlieMead53
Child Brian Injury Trust: http://www.childbraininjurytrust.org.uk  Twitter: @cbituk
Vievolve: www.vievolve.com Twitter: @Vievolve

My new book for parents looking for SEN help – launched Monday 10th October 2011

On Monday, I officially launch my new book aimed at helping parents of special needs children get the education they need. It’s first coming out in ebook format, followed by a paperback in a month.

The book’s called Special Educational Needs – Getting Started with Statements. It’s a parent-to-parent guide to starting to compile a statutory assessment application for you special needs child.
It’s tough enough having a child who has special educational needs – getting them the right help can seem like an impossible task. This book sets out in a simple, easy to follow way, a step-by-step guide to how to prepare the best application you can. While aimed at the UK Education system, parents everywhere will find it useful if they are trying to organise a case for their child.

I’ll write more about it on Monday, together with links to where you can buy it. In the meantime, it would be brilliant if you would pop over to the facebook launch page and say hello!

The event page is here: http://www.facebook.com/event.php?eid=297761316917633

The sidelong glances that can cause anguish

One of the most difficult things to cope with when your child has a ‘hidden’ disability that affects their behaviour or social communication ability, is the attitude of other people, even other parents.

When my older son was small, he would always be on the go and would find playing with other children difficult, even though he wanted to. He would be unable to sit still in class, would always need to be first and when upset could go into a deep, black sulk that would be incredibly hard for him to recover from. I often felt that people were looking at him and blaming his ‘bad’ behaviour on a lack of parenting skills.

At first, he was invited to parties and to tea, but play-dates became few and far between. On the way home from school he would sometimes be in a fury because of something that had happened in school and would march off in front of us or sit on a wall and refuse to move. Other parents would pass us by, maybe with a pitying smile, sometimes with a disapproving look. What a terrible mother she must be, I could almost hear them think.

At the time, I was searching for answers to my son’s difficulties. Other parents, I know, thought I was just trying to blame his behaviour on ADHD when he was just a naughty boy. After all, he looks perfectly normal and he’s clever. He just needs a firmer hand! Then when he was initially diagnosed with ADHD (although later changed to Asperger Syndrome) and we tried medication, other mothers’ disapproval was palpable. All he needs is better parenting – what kind of mother gives her kid ‘the chemical cosh’?

Once, following the internment of my mother’s ashes, we went for lunch at a local pub. We were several hundred miles from home so we had little option. My younger son, who also has AS, was distressed, hungry and thirsty. When he is like this he becomes unable to speak or make any decisions even about what he wants to eat. He made something of a scene and then, when food came, I had to sit him on my lap and help him eat and drink. A woman at a nearby table had glared at us throughout with the most sourpuss look on her face that you can imagine. I had had enough. “What are you staring at?” I challenged her. “My son is autistic and we’ve just buried his grandmother!”. The woman looked shocked that I had called her out. “You’re the one I’m looking at,” she claimed, which could not have been further from the truth. My sister, Deborah, who had seen the same thing, said to me, “Good for you.” That woman had passed judgement on my son’s distress, not knowing anything about him or us. I feel angry now, just remembering it. She’s just lucky my sister Claire hadn’t been there; she’d have got up and smacked her one!

It’s people like that woman and other self-righteous mothers who have no experience of children with so-called ‘hidden’ disabilities that make life harder for those of us who do. Sure, there are bad parents out there, but before people judge, I just wish they would consider that the child that’s having a meltdown in the supermarket may just have special needs and the harried parent with them is probably exhausted, embarrassed and hoping for understanding, not condemnation.

SEN Conference and launch coming up in Newbury in October

A two-day conference is being held for parents and professionals concerned with special educational needs is being held in Newbury, Berkshire on 14th and 15th October 2011. The conference, entitled “Towards a Positive Future”  is aimed at parents and professionals, to inspire, share experiences and discover how they can achieve more for children with special needs. The conference is being held on October 14-15 at Arlington Arts Centre, Newbury and has been organised by practitioners Wordswell and social entrepreneur Robert Ashton.

It will herald the launch of a new foundation that will enable practitioners to join together to provide multi-disciplinary specialist services for children with special educational needs. It’s hoped the Clarity Foundation could transform the present fragmented and bureaucratic system. The Foundation hopes to attract health and social care providers, as well as education specialists, to join as members who can be referred to families and local authorities as approved providers meeting statutory guidelines.

The foundation is the brainchild of speech and language therapist Janet O’Keefe and Robert Ashton, best selling business author, social entrepreneur and campaigner, who are passionate about providing a new joined-up efficient system which supports children and their families with educational support, while at the same time eliminating unnecessary duplication and bureaucracy.
There are currently 1.7 million children with special educational needs in England who require support for wide ranging conditions, from dyslexia, dyspraxia and Down’s syndrome, to autism and attention deficit hyperactivity disorder.
Janet says: “We believe that having a one-stop shop is the best way to enable parents and local authorities find all the support services desperately needed by children with special needs, and that our foundation is the most practical and efficient way of ensuring that those services are integrated and coordinated. We need to bring practitioners from health, education and social care together and plan for the future while the present guidelines for new contract arrangements is under review. Our foundation will be a valuable database of all heath and social care providers, as well as education specialists.
“Additionally, we can streamline time consuming and expensive administrative processes. For example, we can help with criminal bureau checks and professional indemnity insurance. At the moment, if a practitioner is not directly employed by a school or local authority, every school they visit should conduct its own CRB check. Many practitioners regularly visit 20 schools a week sometimes in several different counties and are therefore checked 20 times.”
Robert says it makes good sense to become more efficient during the present shake up of these services:
He says: “However you feel about the Government’s “Big Society” agenda, the fact is that the worlds of education, health and social care are undergoing massive change. The Clarity Foundation is being formed to help parents make sense of those changes, and in parallel to help practitioners create their own enterprises. That way both groups can connect, create opportunities and meet the needs of young people striving to overcome disadvantage.”
Specialist speakers include educational psychologist and former head teacher Charlie Mead, who has worked with children with severe emotional and behavioural problems and special needs for 20 years and Kevin Geeson, CEO of Dyslexia Action, who will highlight the impact of the SEN Green Paper.
Janet is also launching a book she has edited at the conference also called Towards a Positive Future which includes stories, ideas and inspiration from children with special educational needs, their families and professionals.
Full details about the conference can be found at their website, Towards a Positive Future: http://towardsapositivefuture.wordpress.com/

Autism Alert Card Developed by local group.

Autism Rights Group Highlands has developed its own Autism Alert card. The ARGH Autism Alert card is designed and produced by and for autistic people and is a UK wide initiative recognised and supported by the Scottish Court System, NHS 24, independent Autism Consultants, international accessibility services and many others, for use by autistic adults and children everywhere. ARGH is a group run by and for autistic people, self-funded and self-governed, independent from any other organisation.

Their intention is that the card can be used in day to day situations, for example shops, libraries, colleges, buses, as well as in emergency situations such as criminal justice or health. It is already being carried by people of all ages across the UK who have reported that it is really working well as a communication aid. Made in a credit card style from high quality plastic, the alert card fits easily into a person’s wallet, purse or pocket, designed to be easy to carry, it acts as a visual aid to assist both the person carrying it and the person to whom it is presented. The card is produced to be cost neutral, not to make a profit.

Dr Dinah Murray, Autreach IT, Autism and Computing, researcher, person centred planner says about the card: “ARGH in the Highlands have taken up the brilliant idea of an autism alert card, by autistic people for autistic people. Their pioneering card slips into a wallet, grabs attention fast if needed and can prevent situations escalating because of misunderstanding and miscommunication. ”

To obtain a card please send £1 cash, or a cheque made payable to ‘Autism Rights Group Highland’ including a self addressed envelope with a regular 1st class stamp to: ARGH 22, Wester Inshes Place, Inverness, Highland. IV2 5HZ.  More information about the card can be found on the ARGH website, http://www.arghighland.co.uk/arghcard.html

 

The Misunderstood Child – by Kathy Winters

This wonderful poem has been around for a while but I thought it might strike a chord with some of you so I thought I would share it here.

The Misunderstood Child
A poem about children with hidden disabilities

by Kathy Winters

I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different, somewhere in my mind,
And what it is, nobody knows.

I am the child that struggles in school,
Though they say that I’m perfectly smart.
They tell me I’m lazy — can learn if I try —
But I don’t seem to know where to start.

I am the child that won’t wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can’t handle most smells,
And tastes — there are few foods I’ll eat.

I am the child that can’t catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait.

I am the child with whom no one will play —
The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.

I am the child that tantrums and freaks
Over things that seem petty and trite.
You’ll never know how I panic inside,
When I’m lost in my anger and fright.

I am the child that fidgets and squirms
Though I’m told to sit still and be good.
Do you think that I choose to be out of control?
Don’t you know that I would if I could?

I am the child with the broken heart
Though I act like I don’t really care.
Perhaps there’s a reason God made me this way —
Some message he sent me to share.

For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood.
I am different – but look just like you.

The Disney Channel & Aspergers

My eldest son, who has AS, likes to watch the Disney Channel. My younger son, who also has AS, derisively calls it ‘Disney & Ketchup’, likening it to fast food that’s all the same (he has a point). But then, their AS presents very differently to each other – that’s the thing about Asperger’s – no two people have exactly the same symptoms which is why it can be so hard to diagnose.

I believe that Disney programmes such as Shake It Up, Wizards of Waverley Place, iCarly and Sonny With A Chance, can help people with AS develop their social awareness.

The Disney Channel offers very moral programmes. They teach right from wrong, model behaviours, discuss social dilemmas and show conflicts that are resolved by taking the right course of action. Most of all, they’re not subtle and are over-acted, so are easy for a child with AS to get to grips with, without confusion.

They portray young people who are integrated with the world and their surroundings, who relate well-and sometimes not so well- to others, often in an overblown way, which is good when you can miss subtle cues. They show the cool kid, the bully and the nerd and hold mirrors up to their behaviour enabling their traits to be magnified in a way that is easy for a child with poor social understanding to comprehend.Sometimes bad things happen to the central characters and we are shown how they deal with it and get through it. Sometimes, to me as an adult, it can seem puerile, but it’s that simplicity that works on a level that gets the message across.

While it wouldn’t be a great idea for a child to copy the actions of the characters exactly and over-act in real life (a danger in a child with AS), it is possible to use these programmes to discuss why certain things happened, why certain reactions were shown or why particular misunderstandings happened.  While real life isn’t as clear-cut or sugary as Disney life, I think it is possible to use the programmes as a learning tool for exploring social situations and to apply the lessons learned by the characters in the programmes to every day situations.

New Autism Act Passes Final Hurdle

The National Autistic Society is today celebrating the passing into law of the Autism Act. The following is from their website:

The Autism Bill has made it through its final parliamentary stage and will now become the Autism Act. The Act is the first ever disability-specific law in England.

The Autism Act started out as a Private Members Bill, drafted by The National Autistic Society (NAS) and taken forward by Conservative MP Cheryl Gillan. The Bill was backed by a coalition of 16 autism organisations and had overwhelming parliamentary support, being backed by all the main political parties.

The adult autism strategy

The Autism Act will guarantee the introduction of the first-ever adult autism strategy, which will set out how local services should be improved to meet the needs of adults with autism.

The strategy will cover a range of issues including health, social care, employment and training and, crucially, will be accompanied by guidance which places a legal obligation on local authorities and NHS bodies to meet certain requirements.

The strategy will be published by April 2010 and the accompanying legal guidance no later than December 2010.

You can read more here

Congratulations to the NAS and Cheryl Gillan MP.

Don’t Write Me Off – NAS campaign

The National Autistic Society has today released figures showing that only 15% of adults with an autustic spectrum disorder are in full time paid employment.This means that 85% of the 300,000 people with an ASD may only find part-time work, most probably low-paid and rely on family for support and benefits for income. The NAS also says that many of those who do rely on government help are finding it extremely difficult to navigate the benefits system since changes were made to incapacity benefit.

From The NAS Campaign, Dont Write Me Off

From The NAS Campaign, Don't Write Me Off

We are not talking here about the work-shy, we are talking about people who want to work, to have some level of independence but who find the world just isn’t set up to help people like them. The NAS is launching its ‘Don’t Write Me off’ campaign and says a key problem is that staff at the Jobcentre Plus, where jobs are advertised and who decide which benefits someone is entitled to, have a lack of understanding of autism.

This statistic is extremely worrying for us as a family with two sons with Asperger’s Syndrome.Although our children are both in a school where learning skills for life is an important priority, what happens to them if they encounter problems through ignorance or prejudice from those in authority when they go out into the wider world? It is the aim of the school that by the time they leave, they will be as well equipped as anyone else, if not better, to deal with adult life but as we parents of ASD children know, for them, unexpected and unforseeable events can be extremely difficult to deal with.

The NAS found that:

  • just 15% have a full-time job
  • one-third are currently without a job or access to benefits
  • 79% of those on Incapacity Benefit want to work.

The National Autistic Society is demanding that the system should be made to work for people with autism and the Government must deliver on its commitment that no one should be ‘written off’. It says adults with autism need:

  • Employment and Support Allowance to work for them
  • Jobcentre Plus staff to understand and meet their needs
  • a national strategy to transform access to employment.

I have just emailed my MP, Jeremy Hunt in Surrey South-West to ask that he supports this campaign. You can do the same with your Member of Parliament using this link: http://www.dontwritemeoff.org.uk/ It takes just a couple of minutes and you can feel satisfied that you have done something today to help people with autism.

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