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

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

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

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

Research Recommendations

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

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

What NICE says not to use

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

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

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

Kilimanjaro Update – no casualties so far!

Tania writes…

A quick update on the 17 boys, all with some form of special needs, including my eldest, who’ve headed off from More House School in Frensham to climb Kilimanjaro and build facilities at their twin Shia School in Tanzania.

They’ve all arrived safely, are haggling and buying their own food and cooking for themselves, doing acclimatisation treks to prepare for the climb and even practising some Swahili. No casualties reported so far, though I am still worried that five pairs of pants for a month just isn’t going to cut it.

Below is from the front page of this week’s Surrey and Hants News by journalist Henry Ascoli who asked if he could focus more closely on Luca so that the readers would understand more about what a challenge it is for these boys in particular.

Fingers crossed they stay safe and I’ll let you know how they get on.

For me however, the challenge will be to get his younger brother into school for the rest of the week before Founder’s Day on Saturday, a morning that is always a test of endurance, high emotion and anticipation seeing which parents have deepest pockets to bid on the yearly auction (Hint: it won’t be us).

It’ll be hot, so I advise any new parent at our school to have fans, water and tissues (for joyful tears) at the ready, as the boys (all 400+ of them aged 7 to 18, except for those below) collect their end of year certificates and we laugh as Mr Yeoman pokes cruel, yet caring, fun of the sports teachers once again.

Kili

Research links gluten sensitivity to autism

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

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

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

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

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

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

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

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

 

 

Asperger’s, anxiety, Angels and an African adventure

Tania writes:

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

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

Kilimanjaro

Destination Kilimanjaro

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

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

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

brotherly love

A brotherly farewell

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

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

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

Amber good luck Angel

Amber good luck Angel

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

Me with Son1

Tania with Son1

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

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

kitcheck

Last minute adjustments from Top Dad

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

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

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

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

Tania writes:

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

Attwood

Tania with Dr Tony Attwood

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

 

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.

(more…)

Ordering at Starbucks, Asperger’s style

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

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

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

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

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

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

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

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

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

Son2 grinned. “I panicked…”

Skiing, Steam Punk and a view to the future

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

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

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

What now for Asperger’s?

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

What is the DSM-5?

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

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

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

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

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

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

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

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

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

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

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

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

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

What new mental illnesses does the DSM-5 list?

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

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

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

What other changes are included?

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

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

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

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

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

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

Does any of this affect me?

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

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

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

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

Links to the headlines

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

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

Further reading

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

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

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

Son1 - All rights reserved

Aged 7

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

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

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

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

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

And find it we did.

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

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

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

Son2 winning Chairman's Player of the Year for 2012

Son2 winning Chairman’s Player of the Year for 2012

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

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

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

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

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

Pathfinders, politics and parental co-production

Last Friday, our parent-carer forum in Surrey, Family Voice joined with Surrey LA and local voluntary and community services to host an SEN reform pathfinder update.

Surrey is one of 31 Local Authorities that make up the 20 pathfinder areas, with Surrey being part of the largest group, the SE7.

We had a great line-up of guests including Stephen Kingdom from the DfE, SEN barrister Gulshanah Choudhuri and Susie Campbell, the woman who has been responsible for pulling together all Surrey’s different streams of work for the pathfinder trials – a huge job.

This was an important conference and the right time to update parents whose children these reforms will affect. The draft bill was published last September and since then it has been picked over by parliamentarians, local authorities, charities and lawyers.

Ministerial Assurances

Stephen Kingdom, for the DfE, re-stated the Minister in charge, Edward Timpson’s assurances that no rights would be taken away from parents or children and that there was definitely scope in the draft bill for a tightening up of the language to  make that clear. He said they were working with the Department of Health on structures for redress if a stated provision is not made by a health organisation.

On timescales, he said they would be shorter than they are at present and the requirement for mediation would not extend the timescales for appeal. As mentioned on this website last week, Mr Kingdom confirmed that Speech and Language would stay under the remit of education and said that an ECHP must be as clear and specified as statements “should be”.

The Good, Bad & Ugly

Gulshanah Choudhuri

Gulshanah Choudhuri of SEN Barristers, called her presentation “The Good, The Bad and the Ugly” and addressed some of the legal concerns over the bill’s wording, in particular that there is no duty on health to come up with the provisions in the proposed Education, Health and Care plan, beyond a stated commitment in the new NHS Mandate for ‘joint commissioning’. She called on the government to make sure that children who may not have an educational need but do have a significant disability and so will need health and care provision are included in the final bill.

Gulshanah also called for the new SEN Code of Practice that must accompany the bill to undergo parliamentary scrutiny because it is the bible that parents, SENCos, lawyers and Local Authorities use and as such it is vital that it is closely inspected to ensure that it is the best it can be. Make it updateable by all means, but first of all, it has to be right.

Co-production a “no-brainer”

I spoke on behalf of Family Voice Surrey as co-producers of the conference and this, in itself shows how far we have come in changing the relationship from being on opposite sides to having our opinions given equal weight. If this government is to be lauded for just one thing it is that parents have been put at the heart of the reform and mandated to be closely involved with any decision-making processes that will, of course, affect our children. Even though my boys are now 15 and 13, with an EHCP going up to 25, we’ll be in the system for at least another ten years.

Family Voice Surrey is still a relatively new parent carer forum. We had our launch about this time last year it’s been quite a challenging year so far because we had to plunge straight into the pathfinder workstreams as parent representatives.

Fighting to get the right support can be lonely and isolating and frustrating, especially when it seems that the services you need are not available or you’re told your child doesn’t qualify for them or that you’ve have to fight for the educational help they need every single step of the way.  Expensive legal battles for assistance have become far too common and unacceptably adversarial. We all have many horror stories and they are still being created as this culture change has most definitely not yet filtered through to the coalface of SEN departments up and down the country.

Changing all this is what the reforms are supposed to be about. As parent representatives, we’re not there to window dress. After a tentative beginning on all sides, we’ve worked together for the best part of a year, and our views are listened to. I think that co-production has largely so far been a positive experience. It has most certainly given us a voice as parents and, I think, Surrey has seen the benefits of having the first-hand perspective of SEN services that we bring – even though our views are not perhaps always comfortable to hear.

It’s a no-brainier when you look at it. How do you know if you’re delivering the right support and services if you don’t speak to the people using them and their families?

The Minister, Mr Timpson certainly seems to be listening to those concerns that have been voiced and I hope that the bill’s wording is tightened up as soon as possible. Good intentions and assurances are fine, but I think everyone would feel much better if it was down in black and white in the Bill itself.

Reform – expensive but worth it

As for the trials themselves- they are only just beginning. Some families have been recruited, but this is an ongoing process.  Key workers- the person who is to guide a family through the whole process- are still being found and trained. The trials will need to be monitored and evaluated and, at the moment while there is nothing in law, a child who qualifies for an EHCP will still also need a statement as their statutory protection.

There is still much work to be done, and as the trials have been extended until September 2014, more money will need to be found to support this. There’s no doubt it’s going to be hugely expensive by the time the new system is finally in place, but if there’s something worth doing, it’s this.

In the same way that it is right to support children from difficult backgrounds so that they do not perpetuate the expectation of a life on benefits, it is right to support children with special needs and disabilities because many, though obviously not all, will have a much better chance of becoming a contributing member of society with the right assistance when it counts – in their school years and early adulthood.

This is the way to cut welfare – over a generation of helping our adults of tomorrow reach their potential, have a positive outlook and believe that they can achieve their dreams, wherever they lie. It is the responsibility of today’s adults – all of us – to help make that happen.

Can you help with Pathological Demand Avoidance Research?

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

Hannah Reynolds

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

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

SEN and disability stories you mustn’t miss

The summer holidays may be underway but the silly season for news certainly doesn’t seem to have arrived as far as news and great blogs go. Although, as this is Olympics year, we may miss it altogether. I’m especially pleased as the Olympics brings some old and sorely-missed friends into town to cover it for various news organisations.

In special needs this week, there have been a number of notable stories, including the school exclusions figures. the BBC ran on the angle that there was an 11% drop in exclusions across the boar and, while this is of course welcome news, it’s much more worrying that pupils with statements are nine times more likely to be excluded than a pupil without SEN, a fact that news organisations seem to think is just par for the course. Now remember, this is statemented, not just SEN kids, so these are children who are supposed to have statutory help in place to enable them to achieve. Does this indicate that many are simply n the wrong school environment or that their statements are either inadequate or not being properly implemented? I really hope someone with the right resources (yes, I know, what are resources?) looks into this more closely.

There are also a few great blog posts from Chaos in Kent, Lynsey Mumma Duck and Place2Be, so do check them out. Also, if you’ve read or written something fab this week about special needs, leave the link in the comments for me!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

Food for thought: some great special needs posts and news this week

It feels a bit surreal, being Friday already. Long weekends do that, don’t they? And yet a whole week must have passed because there have been all these great stories. It’s been a great week for thoughtful special needs posts too.

Finally, don’t forget there are still some parent bursary places left for the SEN conference in Newbury next weekend. See the link in the list below. If you come, make sure you say hello!

Research, articles & opinion – special needs news from this week

Tania TirraoroAn incredibly busy week, so I missed my Wednesday post as I was in Brussels to speak at a EURORDIS workshop on social media for rare disease organisations. I was describing how we set up the social media for DysNet, the new Limb Difference Network for which I am PR & Community Manager.

It was a really interesting and exhilarating day, hearing from other organisations such as Bee For Battens, a charity set up by a family who are dealing with the loss of one child and the illness of another with Batten’s Disease. As is so often the case, such terrible adversity and tragedy prompts some people not to hide away but to reach out and help others in a similar position.

We hear so often today about greedy bankers, self-interested politicians and welfare cuts to the most vulnerable.  We hear nowhere near enough about people who, despite their own difficulties, put their energies into offering care and support to those in need. These are the inspirational people that newspapers should highlight on a daily basis – it would, I believe, have a positive effect on the nation as a whole.

And so… I’ve been busy, but not too busy for the ever-popular Friday round-up. Please do read my post about launching DysNet and another inspirational person, Geoff Adams-Spink, if you missed it earlier in the week. Enjoy the sun!

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?

Great special needs stories, blogs and a cute dog too

For the first time this week, I’m alone in the house, apart from Leo the Labradoodle, currently sulking because he had to have a bath after rolling in something revolting. I haven’t told him yet it’s his anti-flea treatment day too, which he’s also not keen on. Everyone but me has had the flu (man flu of course). As a registered carer, my GP gives me a free flu jab so I have managed to avoid it. This is just as well as I’m flat out preparing for the main launch of  DysNet, the new network for people affected by limb differences for which I’m PR & Community Manager.

And so, exhausted, I bring you my weekly round up of recommended special needs stories and blogs that I’ve seen this week. It just remains to say a huge thanks to all who voted for me in the BritMums awards, because I’m now going to have to find a nice frock as SNJ has been chosen as a finalist!

Advocates For Children – a FREE SEN legal advocacy charity.

The world of special needs is, I have discovered, populated with extraordinary people  – both those who care and do their best for their children and professionals who go the extra mile to provide whatever help they can.

One such lady is Gloria Vessel, a barrister who has for many years carried out pro bono work for families affected by disabilities and SEN. In a decade of helping families at the SEN Tribunal, Gloria has never lost a case.  However, it became clear that she could not take on all the children whose parents were asking for her help so she founded the charity, Advocates for Children. Today, Gloria has written about the charity and its work exclusively for Special Needs Jungle.

**

For parents of children with disabilities it really is a jungle out there, especially when it comes to getting the right school, or the right schooling for your child. Parents are faced with a bewildering mass of Codes of Practice, deadlines, and the ever present prospect of having to take your case to a Special Educational Needs Tribunal. Advocates for Children is here to help.  We are a relatively new charity; only three years old.  Our volunteer Advocates help children with disabilities and life-limiting conditions aged 4 – 16 with problems at school.  Our services are free.

Advocates For ChildrenProblems we deal with include getting the right educational support for a child at school, getting the right school for the child,  giving parents advice on where they are going with their child’s case, or addressing the issues of bullying or abuse of children. We believe that when you are helping children one size does not fit all.  No two cases are ever the same, and we know that every child and every family are unique, so we devise help to fit the needs of each family and each child.

Your child is never just a case number to us.  Your child is a unique and special individual that we are privileged to advocate for. It is our policy to see each child that we Advocate for, so that we know best how to help them.  Our central focus is always what is best for the child. We also give advice to parents over the telephone, where they simply have a query that they need some help with.

For many parents we can resolve a problem with one call. If parents want to be legally represented, we can help you to find the right solicitor, and to advise you on what you need to do.  In certain circumstances, we would represent our own clients at a Special Educational Needs Tribunal, however we try as hard as we can to avoid a Tribunal if that is possible. The law is a vital tool for parents to be able to get help for their child, but we urge parents not to see it as a first resort, or as the only resort. So often parents will ring asking about Tribunals, or they are even be on their way to Tribunal, without ever having been told, or having been able to find out, what they actually need to do to give themselves the best chance of success at a Tribunal, or even understanding exactly what is involved.  That is a dangerous position to be in.  Knowledge is power, so we help to give you that knowledge.

It is also amazing how many parents have been told that they need to go to Tribunal without ever having really met with the Local Education Authority to discuss their child’s case.  We can review a case and see where there are areas of agreement, as well as disagreement, and see if a solution can be arrived at by negotiation and not by immediate legal action.  That benefits both sides and benefits the child.  And, if it comes to a Tribunal, the parents will be much better prepared, and will know what they need to focus on.  It really is good to talk! A Tribunal is a legal procedure and the evidence you put forward is vital to your case.  We advise you on what the evidence is that you need.  You know your child inside out, but a Tribunal Panel does not.  They have to decide on what your child is all about by the written evidence in front of them.  So, you need your written evidence to help you make your case.  Of course you can talk about your child, but you need written evidence too.

As a barrister I have the greatest respect for and faith in the legal process, but I also know that the better informed parents are the better equipped they are to make all-important decisions for their children before that process begins. Advocates for Children believes in the dignity of the child.  We champion the legal and human rights of the children we Advocate for and our watchwords are ‘Listen, Respect, Care’. Our Trustees are all Mums and Grandmums who really understand what our clients are facing and that is what we feel is our greatest strength, as it drives all that we do for these special children. Our Mission Statement is; To enable children with disabilities to have the opportunity to fulfil their true potential and have their chance to shine. We are proud to do just that.

http://advocatesforchildren.org.uk/

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.

Common sense solutions to solving dyslexia issues

Last week, while reading my SEN news feeds, I came across an article about dyslexia on the Conservative Home website by education expert, John Bald. John is a former OFTSED inspector and contributor to The Guardian. He has almost forty years’ experience of teaching people of all ages to read and write, to learn foreign languages and to understand and use arithmetic.

I got in touch with John and asked if he would mind setting out his ideas in an article for Special Needs Jungle readers. He very kindly obliged – and I think you will find it extremely interesting reading:

*

Tania’s request seemed simple – she had read a posting dealing with literacy problems on another site, which set out to explain what I described as “the dyslexia racket”. Could I write a straightforward guide for parents on what to do if their child has a problem?

For some issues, the answer is, “Yes”. If the problem concerns literacy, and does not reflect a serious general learning difficulty, bring your son or daughter to see me, and I will fix it for you without charge. This is a big claim, but I deliver on it, time after time, because I know the mental processes involved in reading, and the regular and irregular features of English spelling like the back of my hand. As we read, we use the information contained in letters to do several things at once. We identify words by tracking print closely with our eyes – the latest tracking devices show eye movements following print, as well as changing their fixing point on the page. As we do so put them together into phrases, to reproduce the intonations of the language and reconstruct the sense indicated by the author.

John Bald

The process is a little like reading music. Phonics, the relationship between words and sounds, is at the heart of it, but, unlike musical notation, they are not always reliable, so we have to learn what the letters are telling us in an individual word. For example, the a sound in can has to be stretched to say can’t, and the letters don’t tell us this, any more than they tell us the difference between do and don’t. Once we’ve learned to use what the letters tell us, without supposing that they tell us everything, we understand that the language is a human construct, with human failings, and that it does always respond to strict logic.

As I say to children, English is roughly a thousand years old, and if we were a thousand years old, we’d have a few wrinkles. Much of the difficulty many people experience with reading in English arises because teachers do not know the wrinkles. It’s not their fault – no-one has pointed these out in their training. The reason I came to know them myself was that I did a degree in French, which is the source of over half of the problems. Say table in French and you will hear that l comes before e. It’s phonics, but French phonics. William the Conqueror’s invasion in 1066 left us with a lot more than castles!

How we put words together in phrases and sentences is also a bit like music, and I only understood this last year, when I read the French government’s national curriculum for learning English. It points out that, except for very short words, one part of each word is almost always picked out for stress. Again, the letters won’t tell us what this is – we have to know it, and it is not even the same in words of the same family – photograph, photographer, photography. The last straw for foreign learners is that we pick out one word in each phrase or sentence for extra stress on its own, usually without even knowing that we do it. Controlling these patterns of stress in real time requires very detailed knowledge of the language, and is one reason why so few foreign speakers of English have no detectable accent.

So, if someone comes to me with a reading problem, I explain this and we practise. First, though, I have them read to me, and ask myself two questions:

1. What is it in this person’s thinking that is preventing them from reading?

and

2. How do I help them adjust their thinking so that they can read?

These questions focus my mind on the person I’m working with, and not on some theory – my own or anyone else’s. We need to tune into print, and to help people do this, we need to know the causes of interference. The most common are guessing at words, usually from their first letter, not seeing clearly – some people are sensitive to certain wavelengths of light in a way that only becomes clear when they have to apply their eyes to the tightly disciplined activity of reading – and not hearing clearly, sometimes because of misconceptions developed in early childhood through conditions such as glue ear. Teachers should know all about these things. Alas, most don’t. So, if your child has a problem with literacy, take him or her to someone who does.

I use a similar approach to spelling , Slimmed Down Spelling, but that is for another posting. An account is at http://johnbald.typepad.com/language/2009/06/slimmed-down-spelling-and-government-nonsense.html. I am currently working on maths.

But what if the problem is not with reading, spelling or arithmetic? What if it is a behavioural issue, Asperger’s or Autism? The truth here, I think, is that our knowledge of these issues is not far advanced from that of our general knowledge of science in the seventeenth century. We can see things that we can’t fully explain, and our attempts to solve problems are therefore not fully effective. Even respected scientists such as Simon Baron Cohen resort to blatant speculation, such as his idea that autism is the “extreme male brain” when the evidence runs out.

But I still come back to my two questions, perhaps extended. What is it that is making this person angry, or anti-social? What is it that they need to understand and don’t, and how do we make it clear to them? We know of successful techniques such as social stories to help children focus attention on other people as well as themselves or, more recently, of practising telling the time quickly in order to focus attention on detail. One thing I can say, from extensive experience, is that anger and poor behaviour often arise from children’s frustration at not being able to do their work, and in some extreme cases because of the effect of sensitivity to light that is not identified because no one is looking for it. If the issue that is causing concern is anger, however it is expressed, then if we are to tackle it, we need to move beyond our concern with managing the anger, find out what is causing it, and do what we can to remove the cause.

Find John’s blog and contact details here: http://johnbald.typepad.com/

TGIF: And a chance to see the week’s special needs news & views

Tania TirraoroThis week we’ve had sunshine, showers, hail as big as marbles and thunder and lightning… it must be April. I’ve whipped up some special needs stories and blogs that might have slipped your notice as you get over all that Easter chocolate.

As you read this over the weekend, I’ll be at a spa hotel with my husband, enjoying our carer’s break, leaving the boys and the dog in the capable hands of my mother-in-law. Have been instructed to leave my iPad behind and relax… if you spot me online before Monday, please tell me to log off immediately.

Conversations with an Aspie teen

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

Son1: Are you saying I’m fat?

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

Son1: So you ARE saying I’m fat.

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

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

Me: Deep sigh.

Later…

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

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

Son1: No you haven’t.

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

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

Me: Slaps own forehead.

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

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

Image courtesy of Cambian

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

What’s been said about special needs on the web this week

Friday’s come around again – this one marks the day my boys break up for Easter and don’t go back until April 18th. Son1 is on a WWI trip to Ypres, Son2 off sick with painful legs caused by Vitamin D deficiency, so their holidays have already started. My task – get Son2 out of the Technolair and into the sunshine, which is easier said than done.

While I’m doing that, have a look at these stories and blogs I found (or wrote myself) in the past week. Lots of good stuff. If I missed your great blog post or news story, leave it in the comments and I can add you to my RSS feeds.

Catch up with the best special needs blogs and news from this week

So many autism, Asperger’s, dyslexia, ADHD and other special needs stories this week. This is my pick of the best of the blogs, news and research.

If you enjoy reading Special Needs Jungle, I would be really happy if you would please nominate SpecialNeedsJungle.com blog in BritMums Blogging Awards in the CHANGE! section

Enjoy this week’s story selection. Don’t forget, if you have your own post or story, add it in the blog comments section.

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

 

Special needs stories you’ll want to read this week

Some great stories and blog posts about special needs that I spotted this week. If you have one of your own, add it in the blog comments below!

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

 

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:

Disability groups call for pause for thought in welfare reform

The NAS has today thrown its weight behind a call for the government to reconsider its plans for welfare reform relating to the Disability Living Allowance. The level of fraud for this allowance is very low and thr form that has to be filled in just to apply for it isn’t for the faint-hearted.

This is what the NAS had to say on their website:

We are calling on the Government to pause the Welfare Reform bill and carefully consider its reform of Disability Living Allowance (DLA). The Welfare Reform Bill which will implement these proposed reforms is now in the final stages of its Parliamentary passage but the details of how the reform would affect disabled people have not been fully investigated.

Last week a Responsible Reform report (known as the Spartacus report) revealed strong opposition from disabled people, charities and other interested groups to the Coalition Government’s proposed changes to DLA. The report showed worrying evidence that the Government’s decision to reduce projected DLA expenditure by 20% may have been based on incomplete or misleading data about the reasons for growth in DLA.  It has also been revealed today that the proposed changes will lead to 500,000 disabled people no longer being eligible for this benefit.

Independent surveys carried out by some of the signatories to this letter have shown that cuts to DLA will force more disabled people into poverty, which is likely to increase the burden on the NHS and social care system in the long run. Such a potentially risky change in policy should not be taken forward without a robust and accurate evidence base and the support of disabled people and the experts in this field.

Last year the Government took the bold decision to pause and reflect on its reorganisation of the NHS after similar levels of concern and anxiety from medical groups and patients. Today Papworth Trust, Action on Hearing Loss, Brandon Trust, Campaign for a Fair Society, Disability Rights UK, Disability Wales, Ekklesia, Leonard Cheshire Disability, MS Society, The National Autistic Society, Rethink Mental Illness, RNIB, Sense, Three Cs, United Response and the Westminster Society are asking the Government to show similar foresight and pause the Welfare Reform Bill to investigate the strong concerns raised above. We ask Peers to support amendments to pause the legislation that will affect so many people’s lives.

Source: National Autistic Society

Surely the government cannot ignore such a wealth of disability expertise all telling them that this most vulnerable group of people will be thrown into poverty (not that they’re living the high life now) if their reforms go through unamended. Can they?

Questions please for my stint at TheSchoolRun

TheSchoolRun website is packed to the gills with great ideas to help your child’s learning. It’s bright, colourful and is a fantastic resource. The site aims to demystify school for parents, giving you all the tools you need to understand what and how your child is learning at primary school. Their informative articles, packed with advice from experts and practical tips from teachers, help parents get to grips with new educational techniques and feel confident about supporting their kids’ schoolwork.

And the week starting 16th January, they’ve kindle invited me to host a Question & Answer board about Special Educational Needs statementing. I’m not a legal expert so I won’t be dishing out legal help but I will certainly be able to offer some great signposting and answer lots of your statementing queries. The board has already begun registering questions that I will be answering as best I can from next week.

To take part, head over to this part of the site. It’s a members site so you’ll need to register if you haven’t already – and if you’re new, a huge amount of great resources awaits you from the site as a whole. Even if you don’t have a specific question, you may find someone has asked a question you’d like to know the answer to.

Teachers didn’t understand my bright sons’ ASD, says Tania Tirraoro (SEN Magazine)

I’ve just been sent a pdf of my article that was in the last issue of SEN Magazine.

The magazine is a great read – lots of useful ideas for anyone – parent or professional – involved in SEN. The have a free trial offer and it’s just £32 a year to subscribe. I take my copy to read while I’m waiting in my car for my boys to finish at school

Click the link here to read  in full about whether teachers find it hard to recognise special needs in bright pupils.

An interesting addendum to the piece, we often hear (and experience) how teachers miss signs of SEN or fob parents off saying, they child is ‘just young’. My sister, herself a teacher with SEN qualifications (a rare bird, is she) says she is often leery of mentioning to parents when she spots a potential SEN problem such as ASD or ADHD in a child. This is because often the parents don’t want to know and can be quite aggressive when the matter is raised by a sharp-eyed and concerned teacher. The pendulum swings both ways….

Click the image below to open the story. SEN Magazine can be found online at www.senmagazine.co.uk. Twitter: @SENMagazine

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 round up for this week

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

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

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)

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

My article in SEN Magazine – order a trial copy for free

I’m very excited as I have an article in the new edition of SEN Magazine. It’s in their ‘Point of View’ section, entitled “Recognising The Problem”. It’s about how, in order toaccomodate a child’s special educational needs, it is imperative first correctly to identify the problem. This is often difficult when a child has complex needs or a ‘hidden disability’ and the teacher is not trained or motivated to recognise the signs, particularly in otherwise bright children.

I anticipate it will be available online on their site at some point in the future but this is a great publication for anyone connected with Special Educational Needs and you can order a free trial copy at the moment by clicking here: http://www.senmagazine.co.uk/component/chronocontact/?chronoformname=trialcopy

 

You can follow SEN Magazine on Twitter and Facebook. They regularly publish informative and useful SEN articles that are useful for both parents and professionals.

SEN conference, Towards a Positive Future, Review part one.

I attended a very interesting conference on special educational needs on Friday. It was held to mark the launch of a new organisation aimed at providing a ‘one stop shop’ to parents needing to find professional services such as speech and language and occupational therapy for their children. It aims to establish a database of professionals who can work with children in teams that talk to each other and deliver a seamless service for the child. It’s still at an early planning stage and its founder, SLT professional, Janet O’Keeefe, is actively looking for ideas and people willing to join her.

The event also marked the launch of Janet’s book, Towards a Positive Future, which I have written about here.

The conference had several interesting speakers some of whom I hope to be able to bring you more from on this site in the weeks to come. The event was held at the Mary Hare School for hearing impaired children near Newbury. The school does inspirational work in providing an education for its pupils, helping each through individually designed hearing equipment. As a non-maintained state school, the school’s head, Tony Shaw, said they are ‘not considered to be part of inclusion’ and have had their funding cut by central government. This, despite the Education Secretary, Michael Gove, himself having a sister with a hearing impairment.

The school has had to diversify to survive, establishing an ear mould lab that services the NHS. Despite this, Mr Shaw says they never forget what they’re there for. He said, “At the core are the children we have the passion of serving.”  It’s a sad fact that, in the politics and cost-cutting of government both local and national, this message is too often overlooked.

Another speaker was Kevin Geeson, CEO of Dyslexia Action, who talked about the opportunities and risks of the Green Paper. He highlighted concerns about the assessment of hidden disabilities such as dyslexia in that it may not be picked up early enough and the question of who will control the personal budgets given to children to provide for their SEN. Mr Geeson said the Green paper brought an opportunity to provide the proper skills and support for teachers to include all children in the curriculum. He said, “Good teaching for children with hidden disabilities is good teaching for all.”

Education solicitor, Inez Brown of Anthony Collins solicitors, set out the legal framework and funding of special needs and pointed out the problem with parents appealing against SEN decisions for children at the new Academies because the Academies do not fall within the Education Act. She also pointed out that the Green paper removes Speech and Language and Occupational Therapy out of educational provision – something every parent of a statemented child should be aware of. This means that the local authority cannot be challenged about these things at a Tribunal.  Ms Brown also made a startling  statement about the trialling of the new green paper which has just been announced and I am hoping she will be writing more about this on this site very soon.

The conference also heard from internationally acclaimed academic, Professor Heather Van Der Lely who has developed an early-identification test for dyslexia called GAPS. I will write a separate piece about this so won’t go into detail here. The professor pointed out that seven per cent of children have a specific language impairment – seven times the incidence of autism. She is trying to bring about the widespread use of GAPS which, she says, is quick, efficient and highly accurate. The crucial issue is, of course, that there are not enough Speech and Language Therapists to help all those that the test could identify. Perhaps the government should focus on how to recruit more SLTs into the profession and create a environment that enables enough of them to stay within the NHS.

The next post will detail the speakers from the afternoon session of this very enlightening conference.

Links for this post:

http://www.dyslexiaaction.org.uk

http://www.AnthonyCollins.com

GAPS

Mary Hare School

Twitter: @JanetOKeefe@kgeeson