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

Tania writes…

Luca Kili

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

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

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

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

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

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

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

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

Happy weekend!

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

Team 1: Luca Tirraoro, Will Scrace, Chad White

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

Team 2:

Led by:    

Kili teams

The teams before departure

 

 

Catch your kids being good with help from Maya Angelou

Tania writes:

“Catch them being good” is the oft-repeated advice to help encourage positive behaviour in children. And it’s good advice. But when your child has a behavioural disorder such as ADHD or Oppositional Defiance Disorder, it can be very hard to do.

For one, you are probably on your last nerve and your child seems to be determined to get on it. For another, you probably feel that you’ve tried all the ‘good advice’ and your child is resistant to all of it.

But, as the parent of two, now teenage, boys both of whom have Asperger Syndrome and one with ADHD and the other ADD, I would urge any parent in this position to keep trying with this particular piece of advice, even if you have to do it, at times, through gritted teeth.

Angelou quote 1It’s also difficult to remember, especially when you’re exhausted and the mere sight of the source of your angst, little Jane or Johnny, can make your stress levels soar. You’re constantly on the edge, waiting for the next crisis to blow-up. Parenting can feel like fire-fighting, with little time for fun.

Being a parent/carer of a child with special needs can be like being in a battle zone with other parents of ‘regular children’ sitting on the sidelines tut-tutting and always ready to tell you your tactics are all wrong.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”  Maya Angelou

The above quote by American writer, Dr Maya Angelou, is what ‘Catching them being good’ for children with behavioural issues is about. It’s not the words you use or the action you praise, it’s about the self-esteem you are building in your child by doing it.

These children may look like nothing bothers them but you would be very wrong to think that. Every harsh word, brush-off, dressing down and punishment is keenly felt as rejection and the constant message that they are bad, unwanted and not worth loving.

So how do you do it? How do you step outside your own heart-ache, despair and sense of parental failure to build up the self-esteem of the source of your stress?

Here are a few tips that worked for us. They may work for you, they may not, but watchfulness will give you clues as to what does work for your child. You have to build on this and not give up. Of course I am not a child psychologist, I’m a parent, like you, and so I am speaking from my own direct experience.

1. Make a list of your child’s difficult behaviours. This may include being super-fast to anger, screaming, hurting other siblings/children, being unable to sit still at the table, not responding when spoken to, refusing to wash or go to bed or walk safely outside etc. Making a list when you are sitting quietly and calmly can also help you begin to identify triggers for particular behaviours.

2. Now you have the list in your head, you know what to look out for. So, when your child has sat at the table for even five minutes, praise them. It’s tempting to ignore it while they’re being good in case mentioning it sets them off, but this is a long process and you will both learn as you go along. “It’s so nice to see you sitting in your seat, it makes me really enjoy being with you at dinner time.”

Angelou quote 2See, this is not just, “Well done for sitting still” which really means nothing. You are, instead identifying the positive behaviour and backing it up with a positive effect it has had.

Another scenario: If you have identified some potential triggers from your list and you realise such a situation is about to arise, don’t wait for it to happen and then react. Step in with your praise first.

Perhaps your child finds not being first in the queue really hard, or not winning on Sports Day overly distressing (both experienced by Son1). Just ahead of time, say to your child that you understand that they find not being first really tough to cope with and you will be very impressed if they can hold it together if the worst happens.

So here, you are validating their feelings so they know it’s okay to feel bad if something doesn’t go as they planned, but you are giving them another option for a reaction. Personally, in this situation, I would also offer a small reward.

If they don’t manage to hold it together, console them rather than reprimand them. I know that Son1 had no confidence that he could control this overwhelming need for being first, but by praising each small step and helping him see that he had done the best he could, helped him to eventually overcome it.

“I did then what I knew how to do. Now that I know better, I do better.” Maya Angelou

Don’t give them mountains to climb though, praise small positive behaviours and begin to build up confidence.

Will it work first time? Maybe, maybe not, but don’t give up. Because :

  1. Your child will begin to see that you understand what makes them tick and this will increase trust.
  2. You will begin to feel more in control because instead of throwing up your hands and wondering WHY s/he does this, you will know and be in a position to help.
  3. Eventually your child will begin to see that they have a choice over how they react to situations. This is a huge skill and something many adults don’t even know.

angelou quote 3“Nothing will work unless you do.” Maya Angelou

So, it’s not a quick fix, by any means. But my child was worth investing the effort in. From being the recipient of behaviour charts in reception, alienating other children and being, at times, uncontrollable, Son1, now 15, is in one month’s time joining a school World Challenge expedition to Tanzania to climb Kilimanjaro and  carry out project work.

I am immensely proud of him and the way he has been enabled to work out many of his difficulties with the help of his Dad, myself and his specialist school.

I hope this might help you with your child. Or maybe you have some tips of your own that you could share?

Teenagers and suicide- a growing challenge for our times

Mental health in adolescents with or without special needs is a growing concern and a particular interest of mine.

I found an article on MedPage Today about a survey of teens who had been treated for suicidal thoughts and mental health problems that indicates they are still at risk of attempting suicide. This, to me, says that  just because you have sought help for your young person in this situation, you can never afford to think the problem has gone away.

sad boyParenting teens is, in so many ways, much more difficult than parenting younger children. A balance must be found between watchfulness and intrusion. They naturally do not want to share their inner thoughts with their parents and keep so much more to themselves. They often think that they should be able to sort out emotional problems for themselves, when they are in no position to do so alone. (more…)

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.

Inspired: Son2 meets Dr Temple Grandin.

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

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

Dr Temple Grandin & Son2

Dr Temple Grandin & Son2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Among the keynote speakers are:

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

Charlie Mead – Educational Psychologist – The Careless System

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

Jane Asher – Actress and President of the National Autistic Society

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

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

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

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!

Autism Eye Magazine – helping you to help your child

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

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

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

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

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

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

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

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

World Autism Day April 2

This is from the United Nations about World Autism Day:

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

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

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

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

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

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

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

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

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

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

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

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

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

Conversations with an Aspie teen

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

Son1: Are you saying I’m fat?

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

Son1: So you ARE saying I’m fat.

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

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

Me: Deep sigh.

Later…

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

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

Son1: No you haven’t.

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

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

Me: Slaps own forehead.

Catch up with special needs news you may have missed this week

Another Friday is here – just one week to go before my boys break up for an almost-month-long Easter break. Here’s my weekly round up of the best special needs and disability stories and blogs I’ve spotted this week. As ever, if you have one to share, list it in the comments of this blog so others can enjoy it!

If you enjoy the Special Needs Jungle site, or have been helped by it, I’d be delighted if you would please nominate specialneedsjungle.com in the BritMums Blogging Awards in the CHANGE! section

Want your SEN product or service listed on the Special Needs Jungle site?

Special Needs Jungle has lots of visitors every day ranging from parents & carers to SEN professionals. It has many email subscribers and is also available for subscription on Kindle.

The site has a page where links to SEN sites and resources are listed. If you would like to have your SEN resource or product listed, please use the contact form to get in touch.

This service is free for parent support groups and SEN/Disability charities. For other companies, there is a £20 a year donation fee that will go to More House Special School in Farnham for its fund to build a School of Engineering.

More House School educates boys from 8 to 18 who might be bright but who have some form of learning difficulty that impedes their progress in mainstream school.

If you know of a company who might be interested in taking advantage of this offer, please forward this link to them.

What did you miss? Special Needs stories from the last week

It’s a bumper round-up of special needs stories and blogs this week – check out what you might have missed:

Got one of your own? Add it in the blog comments.

TOTS 100 - UK Parent Blogs
familyholidays.co.uk

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

 

SEN stories in the past week

Interesting special needs stories from the last week. If you have one I missed, leave it in the comments!

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.

Get the Special Needs Jungle Blog delivered to your Kindle

I’m delighted to announce that Special Needs Jungle is now available as a Kindle Blog subscription. For just 99p a month you can have every post delivered wirelessly to your Kindle or Kindle app so that you can read it offline whenever you want, even if you’re not near your computer.

It means you’re always connected to important SEN news, views and information as well as guest posts from interesting contributors.

If you’re Kindle enabled, whether it’s through a Kindle, ipad or smartphone app, subscribe from the links below:

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SEN Stories in the news this past week

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

IT teaching overhaul announced – about time too!

Michael Gove, the Education Secretary has today announced an overhaul of the way IT is taught in schools. This is great news and I hope our school, although not a state school will do the same. I know they already have some plans underway to beef up the computer science element.

I first talked out this subject back in November last year in the wake of companies like Google and Microsoft saying that our IT teaching was putting Britain at a disadvantage for its future in the tech industry. I back this view entirely. As I said in my earlier post, it’s especially important for children with Asperger’s to be exposed to coding at an early age as many (though not all) have an aptitude for IT and the sciences. Certainly Son2 does and it’s important to support and encourage him in a field in which he can excel as an adult. In fact, I suggest they go further and give extension work for more able students as they do in Maths and English.

Below is an excerpt from the Gove announcement:

The move, which is being supported by industry experts including Ian Livingstone – co-founder of Games Workshop, would give schools the freedom to create their own ICT and Computer Science curricula that equip pupils with the skills employers want.

Other experts, including the British Computer Society and ICT professional association Naace, confirm the current National Curriculum Programme of Study is dull and unsatisfactory. Some respondents to a 2008 e-Skills study said that GCSE ICT was “so harmful, boring and/or irrelevant it should simply be scrapped”.

Companies such as Microsoft and Google and Cambridge University are already working with technology education organisations, such as the British Computer Society, to produce free materials for schools. More are expected to follow.

The Education Secretary also said he was keen for high-quality qualifications in Computer Science to be developed, and welcomed industry-giant IBM’s involvement.

Education Secretary Michael Gove said in his speech today:

“As the chairman of Google, Eric Schmidt, recently lamented, we in England have allowed our education system to ignore our great heritage and we are paying the price for it. Our school system has not prepared children for this new world. Millions have left school over the past decade without even the basics they need for a decent job. And the current curriculum cannot prepare British students to work at the very forefront of technological change.

The best degrees in Computer Science are among the most rigorous and respected qualifications in the world… and prepare students for immensely rewarding careers and world-changing innovations. But you’d never know that from the current ICT curriculum. This is why we are withdrawing it from September. Technology in schools will no longer be micro-managed by Whitehall. By withdrawing the Programme of Study, we’re giving teachers freedom over what and how to teach, revolutionising ICT as we know it.

Universities, businesses and others will have the opportunity to devise new courses and exams. In particular, we want to see universities and businesses create new high-quality Computer Science GCSEs, and develop curricula encouraging schools to make use of the brilliant Computer Science content available on the web. ICT will remain a compulsory part of the National Curriculum, pending the National Curriculum review.

Mr Gove mentioned that “We could have  11-year-olds able to write simple 2D computer animations using an MIT tool called Scratch. By 16, they could have an understanding of formal logic previously covered only in University courses and be writing their own Apps for smartphones.”

Son2 has been able to use Scratch to create animations since he was about nine, and has moved on – but then he is exceptional. But because he is, I think an individualised approach needs to be taken where, as I mentioned earlier, the most able are progressed as fast as they can manage with extension work. Teaching Son2 Scratch wouldn’t do much for him. He’s ready to write apps now. But the elephant in the room is – who’s going to teach them? Are we going to sack existing IT teachers and employ people who are experts in what needs to be taught or just send the current IT teachers on courses to upgrade their skills. Either way, it needs to be done soon.

It’s unacceptable to be told, as I was a year ago that, “We don’t really teach coding here.” Well you should and I hope this announcement will also resonate with private and specialist schools like ours who are not bound by the diktats of  the National Curriculum.

To join in with The Guardian’s campaign click here

To read the full Department of Education report, click here

Which learning resources help SEN kids? Take this survey

Ann Beck, of  The Gift of Learning has asked me to help get her message out about a survey  she’s devised to assess what kind of learning resources SEN children need. See below for details and a link to the survey
“Can you help me to help your child learn?
I have recently started a new business venture with a view to supplying learning resources to parents of children with special educational needs.  As a mum I found it difficult to find affordable resources to help my own son who is dyslexic and suffers from anxiety and so ‘The Gift of Learning’ was born (www.thegiftoflearning.co.uk) .
I’m currently researching which areas of education parents feel they need the most help with and what better way than to ask you directly?  I value your opinions and hope that you can spare me a couple of minutes to answer 4 short questions.
If you’d like to help follow this link http://www.surveymonkey.com/s/8VRRDNG
Thank you!

2012 brings a School Run SEN Qn’A and a win for Pat! #specialneeds

SEN-Getting Started With StatementsIt’s January 6th and my boys are still off school; they finally go back on Monday. It’s been an interesting Christmas break with my eldest having a party for 12 of his closest teen pals at our house (my sister who was staying with us cleared off to the pub). This was preceded by just minutes by my 12 year old slipping off his bedroom ‘Balcony’ (he doesn’t have one) and me seeing him tumble past the kitchen window to the floor. He was mercifully unhurt, though I had to reach for the Christmas sherry at 4pm.  No surprise that I was almost catatonic by Christmas Day. Still, Jamies’ turkey was a hit, the gravy went down a storm and the brandy for the pudding ended up in my glass.

The teenage years bring their own set of issues and these are intensified by their Asperger’s. They are both completely different in their needs and idiosyncrasies – as they say, if you’ve seen one child with Asperger’s, you’ve seen one child with Asperger’s. Finding new ways to parent in adolescence is challenging and exhausting. 2012 looks to be an interesting year for us!

It’ll also be interesting to see how the SEN Green paper progresses though its pathfinder stages in the coming months. Our LEA, Surrey and that of neighbouring Hampshire are among those chosen to test run the proposals and Special Needs Jungle will be watching closely.

When the changes, in whatever form they come, are implemented, I’ll have to update my SEN guide to Statementing book. The name will have to change for a start, though I’m quite certain all the advice to parents having to gather evidence to prove their child’s needs will stay exactly the same. They may abolish the word ‘statement’ but if you want your child to get high level SEN support, you’re still going to have to prove your case and my book can help. Nothing is going to change in the next few months anyway, so if you’re thinking about applying for an assessment, don’t delay – the process is long and often arduous so start gathering your evidence as soon as you can.

I’m soon to be hosting a Q&A on The School Run website about statementing – get your questions in now and I’ll be answering them during the week beginning 16th January.

If you’re interested in the book – and it’s sold quite a few copies it seems, so there’s a lot of people who are looking for advice – it’s just £6.99 on Amazon or £5.18 for Kindle. If you fancy a free copy, I’m offering two for people taking part in The School Run Q&A, check out their site at the link in the para above.

Also, congrats to Pat Bolton Arkless who won the free copy in my Christmas giveaway. Son2 wafted down from his Technolair that he’d scented with cinnamon Glade, graciously leaving his 32″ TV (thanks to fab pre-Christmas sales) Xbox experience to select a name from the hat. Pat, it turns out, runs Parent Power in Gateshead that helps families with special needs kids, so I popped an extra copy in there to help her very valuable work. And now I’ve found her, I also cheekily asked if she could find time to write a guest post about her work. Even though she’s a busy woman, she’s kindly agreed so we’ll feature this in the coming weeks (No rush, Pat, if you’re reading!).

So, Happy New Year to you all and if you have any ideas for great posts, or want to write one suitable for here, get in touch!

Christmas Giveaway – a copy of my SEN Book

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

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

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

Merry Christmas!

https://www.facebook.com/SpecialNeedsJungle

SEN stories that caught my attention this week.

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

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.

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.

NICE Publishes Guidelines on Autism

New recommendations have been published aimed at improving the diagnosis and treatment of children and young people with autism. NICE, the National Institute for Clinical Excellence says that local autism teams should be set up across the country.

Even though it’s estimated that at least one in a hundred children are diagnosed with autistic spectrum disorder (ASD), NICE says levels of understanding among healthcare professionals varies greatly in the UK. It can be difficult to diagnose children with ASD because of the wide range of signs and symptoms. Up to 70% of those with ASD also have other conditions such as Attention Deficit and Obsessive Compulsive Disorder or an intellectual deficit.

Guidance published today by NICE recommends that local multidisciplinary autism teams are set up to support healthcare professionals and enable them to work together with schools, social care, the voluntary sector and other key services which can offer useful insight into this condition. This is to ensure that children and teenagers with possible ASD, as well as their parents or carers, receive the appropriate care and support they need.

  • Autism teams should lead on the referral and diagnosis of individuals with possible ASD, and should include a paediatrician, a child and adolescent psychiatrist, a speech and language therapist, a clinical or educational psychologist, and an occupational therapist.
  • The autism teams should undertake diagnostic assessments where appropriate, and advise healthcare professionals about referrals.
  • Every autism diagnostic assessment should include an assessment of social and communication skills and behaviours through interaction with and observation of the child or young person, and consideration of any coexisting conditions.
  • A profile of the child’s or young person’s strengths, skills, impairments and needs should be developed during their assessment. With consent, this profile can be shared with those involved in the child’s education to help ensure the assessment will contribute to the child or young person’s individual education plan and needs-based management plan.

Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE said: “A correct diagnosis of autism can bring a profound sense of relief to some children and young people from what can be an intense feeling of isolation from the rest of the world.

“It can also help them and their families or carers to get support from education, health services and voluntary organisations and make contact with others with similar experiences.”

This is the first of three NICE guidelines to focus on this condition. NICE will be publishing further guidance on the management of autism in children and young people, and on autism in adults. To help put this guidance into practice, NICE has produced a range of support tools, including signs and symptoms tables for children of preschool age, primary school age and secondary school age.

The National Autistic Society has welcomed the guidance saying these “vital” recommendations should bring about a far more consistent approach to referral and diagnosis, and mean more children getting quicker access to necessary support services.

Mark Lever, NAS Chief Executive, said: “We hear all too often from parents who have been pushed from pillar to post trying to get a diagnosis for their child, and even once their child is diagnosed a further battle to get the right post-diagnosis support. In a recent NAS survey, 68% of parents we spoke to said it had not been easy to get support for their child. Lack of appropriate support can have an extremely detrimental affect on the family as a whole, and lead to more costly services and support being required further down the line.

“The NICE guidelines offer a clear cut process for families in terms of diagnosis and early support and we urge local authorities to implement these recommendations as soon as possible to prevent more children and their families struggling unnecessarily. It is important to point out however, that diagnosis is just the beginning of the journey for people with autism, and in addition to the NICE guidelines we further welcome the proposed NICE Quality Standards, which define best practice across health and social care, giving both children and adults with autism vital information to get the
support and services they need. With the right support at the right time, people with autism can lead happy and fulfilling lives.”

You can read the guidance in full at this link: http://www.nice.org.uk/CG128

Guest Post on Daniel’s Diary

I have a guest post today on the Daniel’s Diary blog, run by the wonderful Sally Huggett. You can read it here: http://www.thecarer.org/?p=804

Great Expectations – Educational Support campaign from NAS

This post is reproduced with kind permission from the National Autistic Society

Half of all children with autism wait over a year for appropriate educational support, and over a quarter have waited more than two years, finds a new report by The National Autistic Society, published today.

The report launches our Great Expectations campaign on Special Education Needs (SEN), which aims to inform and influence the Government’s proposed overhaul of the SEN system.

Children should expect an education that sets them up for life, yet our research, with over 1,000 parents of children with autism and young people with autism themselves, found that far too many children with autism are not getting the education they need and deserve. Our research found:

  • just half of parents (52%) feel their child is making good educational progress
  • 30% of parents feel that their child’s educational placement is not adequate
  • 43% of young people feel teachers don’t know enough about autism.

This whole experience has been utterly destructive for the family. An ongoing, uphill daily battle, trying to help a child who is becoming increasingly socially isolated.
Parent of a child with autism

Parents should expect an education system that works with, not against, them, but too many parents have to fight the system to make it work.

  • 7 out of 10 parents say it has not been easy to get the educational support their child needs.
  • 47% of parents say their child’s special educational needs were not picked up in a timely way.
  • 48% of parents say they have waited over a year to get the right support for their child, and 27% have waited more than two years.
  • 18% of parents have had to take legal action to get the right support for their children, and have been to tribunal an average of 3.5 times each.

Stop picking on meParents told us that while they waited and fought for the right support, their child’s educational progress (70%), mental health (60%), behaviour (68%) and self-esteem all suffered enormously.

It’s really hard to go to school. People don’t understand how hard it is. They judge me for doing things I can’t help.
Young person with autism

Mark Lever, NAS Chief Executive, says: “We have Great Expectations that the necessary changes to the education system can, and will, be made. It is completely unacceptable that so many parents are still fighting a daily battle for their fundamental right to get an education for their child.

“The Government rightly recognises that action is needed, and that they need to reform a system which continues to let many children with autism down.

“Our report sets out the practical, often simple, steps that the Government can take to create a system that works for everyone. The proposed ‘biggest SEN reform in 30 years’, will shape the future of a generation of children with autism. Let’s get it right.”

Our campaign will be launched in Parliament this evening at a reception expected to attract around 80 MPs, including the Disability Minister, Maria Miller and Shadow Education Secretary, Andy Burnham.

We need your help

You can support our Great Expectations campaign by emailing your MP to ask them to raise these issues in parliament. To find out more about the campaign, and other ways you can get involved, visit our campaign homepage.

Our key recommendations

An education that sets children up for life and a system that works with, not against, parents.

Children with autism expect:

  • to get the support they need quickly and easily, regardless of whether they have a statement or EHCP
  • teachers who understand how to support them and who have easy access to autism specialists for help.

Parents of children with autism expect:

  • to have robust, simple ways to challenge the system if their child doesn’t get the support they need
  • local authorities to have a thorough understanding of the needs of children with autism in their area, and to plan provision accordingly
  • to be equal partners in the system and genuinely involved in decisions about their child’s education and the planning of local services
  • local information that empowers them to make the right decisions for their child.

Illustration - let's work togetherWe expect the Government to listen and to act.

Let’s work together. Let’s get it right.

To read the full report please visit www.autism.org.uk/greatexpectations

The Disney Channel & Aspergers

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

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

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

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

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

Should children with Asperger Syndrome automatically be statutorily assessed?

What’s your opinion – should children diagnosed with Asperger Syndrome automatically be statutorily assessed? I think they should because despite seeming to ‘cope’ in a regular class, so many children suffer psychological difficulties that goes unrecognised in busy classrooms. An assessment could open doors for them to get the psychological and educational support they need to thrive.

Others may say of course, that they should be left to get on with things and only have intervention when really thought to be needed. My argument against this would be that teachers are not sufficiently trained in spotting the difficulties encountered by AS children (and why should they be – they’re mainstream teachers after all, not special needs teachers) and in order to access the curriculum to their best, it would take an expert to assess them. Then, the correct level of help can be determined and the child has the best opportunity to get the right help.

Or maybe you have a different opinion on this? I’ve set up a poll on poll daddy for you to give your opinion Either way – please take the poll at the link below or leave a comment.. or both!

New Autism Act Passes Final Hurdle

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

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

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

The adult autism strategy

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

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

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

You can read more here

Congratulations to the NAS and Cheryl Gillan MP.

Don’t Write Me Off – NAS campaign

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

From The NAS Campaign, Dont Write Me Off

From The NAS Campaign, Don't Write Me Off

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

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

The NAS found that:

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

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

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

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

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Back to school – but is it the right one?

For the first time since my sons started at their special school, this term we have had no fees to pay as they are both now being funded by the local LEA. I’ve written in post passim about finding our way through the special needs “jungle” of statementing and I hope if you are in that position now you will find some of the things on this site useful.

Indeed, I am only too aware of how many people are going through the process and are having a much tougher time of it than we did. We applied at a time when our LEA was reassessing the way it looks at Statutory Assessment, Statementing and Funding. For children with high-functioning AS, like our boys, it recognised that it had little suitable provision and that these children, who may have so much potential, so often fall through the cracks. They may end up in the benefits or mental health care system when they become adults because they have not received the social education they needed and cannot put to use  any academic education they gained into a worthwhile career. Or any career.

If they are lucky, they may have had supportive parents and may have been able to progress to university and into a job in a narrow-focused industry (sciences, accounting, research) where their ability to do the job is more highly prized than the ability to make lively and reciprocal conversation. These are likely to be the young people from the very highest and most able end of the spectrum, who are from middle class backgrounds with university educated parents themselves.

But too many AS young people will be in low-paid jobs far below their intellect because they cannot cope with the social interaction needed to progress up the career ladder and they have not had access to or found a route through to the support they need to thrive. Others may find their ASD so disabling that they will have to live in sheltered accommodation, relying on Disability Living Allowance and other benefits.

Now, it is not true to say that if you don’t reach the top of a well-paid profession you won’t be happy. For many people with AS, happiness comes just from having a friend to talk to or being able successfully to cope with everyday living. Many people with AS get married and have families of their own and are perfectly happy within their own circle, thank you very much.

But just think how different it could be if everyone who was diagnosed with Asperger’s Syndrome got the help they needed at an early enough age for it to make a significant difference to the outcome of their life. Yes, some may still need to live in sheltered housing and will work in in low-stress jobs because their condition dictates it. But for others it could mean the difference between a life of just coping and a life of thriving. Every single person with AS should have access to the right kind of education that my boys are lucky enough to be getting.

Parents who are worried that there my be something socially ‘different’ about their child should not just bury their heads in the sand and hope they will ‘grow out of it’. They should not just shrug and say their child is ‘coping’ at school when you really know they are just keeping their heads above water. Your kids have one shot at education and one shot at a successful and happy life and it is the duty of their parents to ensure they have the best opportunity of achieving that. Even if the option of a specialist school is not open, you can speak to your school’s SENCo, make your concerns known, ensure they are getting appropriate support at school and do your own research as well. Parents’ instincts are not often wrong.

I am speaking here from experience. We were once in the position of knowing something was different about both of our boys but not what to do about it. I spoke to their teachers, I researched their symptoms, I got them referred to a paediatrician. We got a diagnosis. We were told we’d never get a statement for either boy as they were too able so not to bother trying. We were told they had to be three years behind to get a Statutory Assessment. We were told all sorts of inaccurate things by teachers who didn’t know any more about Statementing than we did.

We didn’t listen and now we have two statements for both our sons who are both in the top few percent for ability. More than that, our LEA is paying for them to go to the school of our choice where they can be supported. It can be done. Your battle may be harder than mine; you may have to go to Tribunal. You may live in one of those LEAs like Hampshire that think brinkmanship is the order of the day. These councils will oppose you to the very last second in the hope that you will be scared off or you will end up broke, broken or both. They don’t care as long as they don’t have to shell out for your child. Shame on them, but do not be deterred. Even when you are tired and stressed and thinking of giving up, remember who you are doing this for and that they deserve the best you can give them.

If you need advice you can always leave a comment here and I will try to help or point you to someone who can. And things are changing. There are politicians out there who know about special needs, and parliamentary candidates such as Maria Hutchings who are fighting every day to improve the situation for young people with ASD. We just need to get the ones who are actually in the government to make sure that reviews that are currently being undertaken are acted upon so that the next generation of young people on the spectrum don’t face the same uphill struggle as ours do.

More House – A School To Be Proud Of

Saturday was the last official day of term – Founder’s Day. This is something we all look forward to and I don’t mean for the strawberries, cream and sparking wine you get at the end either.

It is the day we get to celebrate our boys’ achievements throughout the year, hear the Headmaster’s end of year review speech and listen to a visiting VIP make the keynote address. This year it was David Moran, the new  Ambassador to the Republic of Kazakhstan and Non-Resident Ambassador to the Kyrgyz Republic, whose talk included the notion that these years the boys spend at More House School will help them forge their characters that they will take with them through their lives.

There is a prize giving, where the boys are awarded certificates for particular areas of excellence and this is all the more touching because many are given in subjects where the boys have faced real challenges. Each boy returning to his seat with his certificates was beaming with pride; a feeling that we parents marvel at, knowing only too well how difficult their journeys have been so far. For our own two boys, we laminate their certificates and put them on the wall of their rooms so they can be reminded every day that hard work gets results.

But the highlights of the day were the speeches given by the outgoing School Captains. The two sixth-formers, smartly dressed in suits, came to the podium to give accounts of their time at More House. The first opened by saying that when he arrived at the school he was a dyslexic. Now, upon leaving, he is a dyslexic with attitude and confidence. He has a place at university and thanks to the education he has received has a great chance at a successful life.

The second young man opened his remarks by noting his diagnosis of Dyslexia and ADHD. When he arrived at the school he said, he was unable to sit still long enough to learn anything, but at MHS he was never excluded from any event or activity (as I presume had been the case at a previous school). He had received a good education both academically and socially and he stood before us a fine young man and School Captain, a son to be proud of as I am sure his parents are.

Both young men took the time to thank the school’s Headmaster, Barry Huggett, who is held in the highest esteem by all the boys and their parents. Mr Huggett is an inspirational figure and he leads the school with dedication, dignity and passion. He announced that the latest GCSE results showed an 83% A-C pass rate, which considering the number and range of difficulties experienced by the boys when they arrived, is outstanding.

Several things became crystal clear for me yesterday. The first is that the dedicated sixth-former I have seen at many events is, in fact, the Music teacher, Mr Place, which just shows me how old I’m getting. The second is that, contrary to government inclusion doctrine, the kind of school you go to is absolutely key to your future life. Had the School Captain gone to a normal mainstream secondary, he may well have left at sixteen with no qualifications and little chance of a bright future. Now he has university to look forward to and a real shot at success.

Some of the boys get support in exams such as extra time or scribes to help them show their true potential. Mr Huggett aims to cut the number by half, and then within a few years, to eliminate the need for special help in exams altogether. This is a lofty goal but one that, knowing Mr Huggett and his staff, I can see being achieved.

To all the staff at More House School, have a wonderful summer – you’ve earned it.

Books I recommend for Special Needs

I have quite a collection of books about special needs and parenting and thought I would share some recommendations with you. I usually buy mine from amazon.co.uk, so I’ll link to each book so you can have a closer look.

1-2-3 Magic – Thomas Phelan – This is an absolute must for all parents who want to regain control of their children and their own lives. It’s slim and easy to follow and very very simple. The key is to talk to your children about this new method of discipline, and when you are counting – don’t say anything else! Both parents must buy into it and FOLLOW THROUGH. Our usual punishment is removal of computer privileges if we get to three without compliance. We don’t usually get to three. It works.

The Complete Guide to Asperger’s Syndrome – Tony Attwood. The foremost expert on AS. Great book, easy to read. I used some of this to help explain my son’s condition for his statementing process.

Kids in the Syndrome Mix of ADHD, LD, Asperger’s, Tourette’s, Bipolar, and More!: The One Stop Guide for Parents, Teachers, and Other Professionals (Paperback) -by Martin L. Kutscher; Tony Attwood; Robert R. Wolff.  – Excellent book explaining the co-morbidities and how you can take practical steps to help them.

Hot Stuff to Help Kids Chill Out: The Anger Management Book -by Jerry Wilde.  A slim volume That is written to be read alongside your child and shows that that anger actually damages themselves and helps children take responsibility for their own emotions. A great little book.

Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family (Paperback) -by Jude Welton – Another slim volume written from a child’s perspective explaining his view of the world as a child with AS. Very useful for siblings, friends, teachers and grandparents. Lobvely illustrations and easy to read typeface.

If you have any recommendations of your own, please leave a comment, I’d love to hear from you.

An Actor’s Life For Him.

My 11 year old has just had his first co-starring role in a school play. He’s currently playing Ratty in a production of ‘Wind in the Willows’ at More House School.

When he came and told me that he was planning to audition, I was very worried about how upset he would be if he didn’t get a part. I wanted to shout, “Don’t audition! It’ll make you miserable!” But I held my tongue and told him what a great idea it was.

On the way home from school a few nights later, he was telling me what he had had for lunch and then, “And by the way, I’ve been cast as Ratty in the play.” I nearly crashed the car, gripped by a sense of excitement and fear. Excitement because someone had had faith in him to cast him (Thank you, Mr Kirkham) and fear because I knew that over the coming months we would have to HELP HIM LEARN HIS LINES.

Now, I have no objection to helping him, quite the contrary, I used to do the same for my mother in her amateur dramatics days. The fear was that he wouldn’t want help and wouldn’t bother to spend any time learning his lines at all. My son has Asperger’s and is very bloody-minded and stubborn. I worried he would refuse any offer of help and, true to expectations, the only time he would let us help was when he was in the bath. We would then have to perch on the toilet lid and go through the script with him as he soaked in the bubbles. Still, at least he was learning it.

The weeks passed and as often as we would ask him if he wanted to rehearse, he would politely turn us down. I ground my teeth with anxiety as I imagined him on opening night, being prompted with every line and ending up humiliated.

The Saturday before the performances, he finally let us help and we were horrified to find that there were several scenes that he only had a very hazy recollection of. In a frantic effort to assist, we recorded the whole script onto his computer so he could listen to it and practise.

Luca as Ratty

Luca as Ratty

Then, last night came. We filed into the hall, nerves jangling, taking seats in the second row, as we were banned from the front in case we put him off. The lights went down, and he was on stage, delivering his lines with perfection. He even prompted Mole at one point. How on earth did that happen? The boy was fantastic! They all were!

The production was beautifully staged, the live music was impeccable, the set imaginatively decorated, the costumes perfect. It was nothing like a ramshackle school play, it was … slick, impressive and great entertainment.

For the first time ever, as I watched my son on the stage, I saw him not as my 11 year old son, but as a young man in his own right, not connected to me at all; an individual with talent, confidence and guts. I was so proud, I could have burst.

For all his problems with ASD, my son is a truly remarkable young man. But although we have tried our best to help him as parents, it is the staff at More House School who have found a way to nurture his gifts, with expertise, understanding and always, encouragement. They make him feel that he has something to offer; that he wants to audition and join in, that there is a place for him and he is welcome. That is no small achievement and proof that with the right educational setting, obstacles can be overcome and where everyone is treated as the individual they are.

It is nearly the end of the school year and I expect I’ll gush again before then about how wonderful our school is, but for now, Mr Kirkham and your amazing team, three cheers for you all and a huge thank you!

Asperger’s Links Blog

The new Asperger's Links site

The new Asperger's Links site

I’ve just started another new site which concentrates on resources for people affected by or interested in Asperger Syndrome. It’s called Asperger’s Links and already has several sections, such as Help & Advice, Forums, ASD Blogs, Education etc.

I started this so people can find the links and read a short piece about the site before visiting. They’ll also know that the sites come recommended.

I’m looking for ideas for new sections and for good links. If you have or know of a good site to add, leave a comment in the relevant section and I’ll add it. If there is no relevant section yet, leave a comment in the post called “Your category ideas” This way we can share knowledge and add to the list of sites you find interesting because if you find it interesting, so might someone else who would never otherwise have come across it. Look forward to hearing from you!

Mother behind autism advert meets Brown – London Evening Standard

Mother behind autism advert meets Brown – London Evening Standard

A mother who wrote a message to Gordon Brown on billboards across the capital to highlight the plight of autism sufferers is to meet the Prime Minister today.

Polly Tommey, from Hampton, whose 13-year-old son Billy has the condition, said she would use their meeting to call for more support for thousands of people in Britain. Her autism charity estimates the Government could save £508million a year by giving jobs to people with the disorder.

She said: “I’m delighted and even thinking of voting Labour for the first time in my life after this. But what we now need are results.”

Mrs Tommey, 42, had made repeated attempts to reach Mr Brown and other ministers over the past few months but failed to get any response until now.  The mother-of-three had accused the Government of ignoring the “overwhelming stress and demands faced by families of those with autism”.

More than 500,000 people in Britain have the condition. She said: “Billy has a bleak future in our blinkered world. It is not fair that his potential is dismissed.

“Unless the problems of autism are understood and support is more widespread, we will see an underclass of desperate autism households.”

Mrs Tommey, a former actress who has worked as a body double for Charlotte Rampling, said she also asked to meet Tory leader David Cameron and Liberal Democrat leader Nick Clegg, but both said they did not have time. Her charity, the Autism Trust, was founded by Mrs Tommey after Billy was diagnosed aged two. Her £500,000 “Dear Gordon” campaign, at 76 sites across London in April, was funded by sponsors and advertising outlets.

Source: Sophie Goodchild, London Evening Standard,11.06.09

Child-Free.. as free as the wind blows..

This morning, without so much as a backwards glance, both our boys climbed on board a coach with their classmates and set off for their annual trip to PGL. For us, this means no children in the house for the next four days. We still have the dog of course, but he doesn’t put up a fight at bedtime or complain that dinner is ‘disgusting’.

At the same time as feeling ever-so-slighly elated, our hearts do go out to those brave teachers venturing forth with fifty boys aged between 7 and 11, all with some type of special need. These range from dyslexia, to speech difficulties to Asperger’s Syndrome. The teachers know only too well what puzzled faces could ensue with the saying, ‘It’s raining cats and dogs’.

Far from being tough little tykes, practically all these boys have in their backpacks their cuddly toys, blankets or other comforter, even the big strapping ones like my 11 year old. He has his old cotton cellular cot blanket, a stuffed reindeer and two stuffed Club Penguin plushies, all shoved down into his rucksack along with his tuck for the trip.

Our boys went on the trip last year and then, there were  a few tears from my youngest before he set off, but as soon as he was on the coach, he was smiling again. I shed more tears on the way home at the thought of them being away from me on a school holiday for the first time. When they returned, I was going through Son1’s bag and there was a suspicious amount of clean underwear, an untouched toothbrush and a still-neatly folded flannel. It turned out that he hadn’t washed, cleaned his teeth or changed his pants for the whole four days.

Despite this squalour, he still managed to bag himself a posh girlfriend at the end of trip disco. She rang him so often afterwards that I heard him say to her, “Can you not ring me so often, it’s getting a bit annoying.” Oh dearie me, he has a lot to learn.. but then he was only 10 at the time.

This year Son2 is determined to grab himself a girl as well. He has carefully chosen himself a pink linen shirt from Zara and refused to get his hair cut so it’s nice and long and trendy. However, after his success last year, Son1 is uber-confident that the prep school fillies will be throwing themselves at his feet again. He’s offered his brother a few pointers, but let’s hope his tips on personal hygiene aren’t among them..

UK lacks Adult Autism/Asperger’s Services

The news today that eight out of ten doctors need more help to spot autism shows the huge gap in services available, particularly for adults with ASD in the UK. The National Audit Office survey found that thousands, especially adults, are failing to get the right diagnosis and hence the right treatment or access to support services that they need.

Eighty per cent of doctors said they felt they needed additional guidance and training to help them identify and treat people with autism more effectively. Indeed, outside this report, this figure is echoed in schools, where many staff say they also need additional training to help children affected with High Functioning Autism and Asperger’s Syndrome.

The reports highlights the fact that high-functioning people with ASD are particularly vulnerable. They are often missed because around apparently 200,000 adults with autism do not have a particular learning disability. This group, the report “Supporting People with Autism through Adulthood” says, often fails to secure appropriate support, as health and social care services are mainly set up for those  with a learning disability, a physical illness or disability, or a mental health problem (which autism is not).

Almost two thirds of local authorities say they felt that current services for adults with autism are limited. Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings.

The truth is that often people with Asperger’s Syndrome are of above average intelligence with areas of particular strengths, but because of their social and integration difficulties, they end up either in low-level jobs or on benefits because they do not have the interview skills to secure appropriate work.

The report says “Greater awareness of the numbers of people with autism, as well as better understanding of autism amongst those providing health, social care, benefits, education and employment services, would lead to improved quality of life for those on the autistic spectrum. Specialist support and joint working across all areas – clinical, social and employment – could improve the transition from childhood to adult services, make services more effective and improve value for money.”

There are several bills concerned with autism going through parliament at the moment, as mentioned in earlier posts on this blog. For children, there is more recognition that children affected by Autistic Spectrum Disorders need additional support in social skills but even so, a recent Cambridge study found that for every three children diagnosed, a further two go undiagnosed. If these children go through school and into the bigger world without intervention, they will only add to the figures this latest NAO study has found.

I believe that teachers or at least one member of staff in schools, preferably the SENCO, should be well trained in spotting autistic spectrum disorders and should have the backing of the school to do something about it. However, it is sometimes the case that when the school does spot a need, they do not get the support of the parents to do something about it.

A further problem is that when people who have received services throughout childhood then reach adulthood, the support they have had simply disappears and they are left to cope by themselves, or often remain in the family home with ageing parents, unable to forge an independent life because of their ongoing difficulties. Indeed, the NAO report says a key factor would be that if the proportion of the local population with high-functioning autism were identified by specialised services and given appropriate support, they would be more likley to be able to live more independently or to obtain and retain employment. The report estimates that if such services identified and supported around four per cent or more of the adults with high-functioning autism in their local area, they could become cost-neutral across public spending as a whole over time, as well as resulting in additional earnings and reduced expenses for individuals.

To read the whole report, click here.

Long ago..when I was somebody

Long, long ago, before I was ‘Special Needs Mum’, I had a great career as a television journalist and news reader. I loved it – the job, the lifestyle, the image, everything. My last job was reading the bulletins that went out on NBC/CNBC Europe – I was famous in Sarajevo, for God’s sake! (UK, not so much!) I may have gone much further if I had stuck with it.

So what happened? Why would I give all that up? The answer, my friends, came in the form of two very demanding sons, born close together and from whom I could not be parted.

I read the other day in the Sunday Times magazine about Natasha Kaplinsky combining motherhood with her high-flying career and not getting much sleep, despite the inevitable nanny/helper. Her career was much more high-flying than my own when I had a baby, but I could have gone down that route, getting a nanny who would help take the strain while I continued gracing the TV screens of far-flung places in Europe and receiving sticky fan mail written in green ink.

My baby however, was not, in retrospect, what you’d call average. He could hold his head up almost from birth. He would lie there awake at the most unkind hour of the night, his blue eyes glinting in the reflected streetlight from outside our Clapham flat. He didn’t sleep through the night for eight months. When he cried, it was loud enough to wake the dead. He crawled early and walked at 9 1/2 months; he was always on the go. We thought he might actually be an alien.

He hated being bathed, dressed, put in his pushchair, changed, put down. He liked being fed and being entertained. As inexperienced parents we thought that perhaps this is what all babies were like. Early trips to the baby gym convinced us otherwise. There was nothing ordinary about him; he was super-bright and hyperactive and it was clear to my husband and I that we could not leave him in the care of anyone else. This meant I could not go back to work immediately.

By the time he was ten months old, I was expecting our second child so again, going back to work was unfeasible.

Our second son was born with a clicky hip, needing a splint and extra care. From the time he was six weeks old, our eldest would walk by him and smack him on the head. Every time. By now, our twenty month old could do jigsaws meant for five year olds and make complicated duplo models. We were convinced he was a genius!

When our youngest began to have Reflex Anoxic Seizures just after a year old (see www.stars.org.uk for help with this condition) it was clear again that a return to work was not on the cards. He could have up to three seizures in one day, usually triggered by his brother being mean to him.

I began to do voluntary work for the charity STARS, using my journalistic knowledge to help with their newsletters and press releases. This turned into helping them with a big heart rhythm campaign (see www.aaaw.org.uk) and then on to learning about how to update their web site.

Over the years this has developed into my own business at www.tirraoro.com. I work from home because now that both my boys have been diagnosed with Asperger Syndrome and we know how they need to be helped, I couldn’t leave them in after school care or regular holiday play schemes.

Too many years have passed now for me to go back to where I was in TV and I’m too old and have too many responsibilities to compete with the young, thrusting twenty-somethings who can work all the hours they’re asked to for not-too-great amounts of money. I’m not sure it would be as much fun either, as in the seat-of-the-pants days when I worked for the newly-created Meridian TV or with mad Croats and Australians in WTN’s foreign TV News Agency, although maybe that’s just the rose-tinted memory glasses.

I read with interest all the furious stay-at-home vs working mother debates and how one is better than the other or not, but for me, the debate is much more complicated than that. I do what web-sites, PR & design work I can from home for small businesses and charities; I’ve written two, as yet, unpublished novels; I’ve passed an OU course in Social Science and I’ve successfully researched and secured two statements of special needs for my sons. And then there’s this blog, designed to help and entertain others like me.

I feel guilty for not bringing in as much money as I could if I worked full-time and sometimes I feel a little regretful at leaving a career I loved, especially when I see people I know still doing it. But I take comfort from knowing that if I had left my children to go back to my career, it would have been almost impossible to spot that they had complex and underlying special needs, nor done as much as I have to get them the help they need. Life is stressful enough as it is; with a full-time job as well, I would have been booking my stay in The Priory.

I know there are mothers of children with SEN who do work full time and their children have not missed out, but personally, I would have found it very difficult to do both, at the level I wanted without a nanny, which I also didn’t want. Having a job like I had meant working shifts, long hours, being called in when a big news event broke and not being able to say no without it dentingyour career prospects. I loved my job so much I would have found it impossible to give as much to both it and to my children without something going pear-shaped. If someone reading this does both those things with autistic children and without considerable support, then hats off to you, I’d love to know how you do it so I can write about you with admiration!

But I’m sure I am not alone. How much talent is going to waste because mothers cannot return to the hours they used to do or find a job that will give them the flexibility they need to use their talents to the full? Maybe I should start a website for people like me who are good at what they do but can only work a few hours a day. If there is already one out there – let me know!

Many autism cases ‘undiagnosed’ – BBC News

A significant number of children with autism and related disorders could be undiagnosed, a study has suggested.  (Reports BBC News Online)

A Cambridge University team looked at existing diagnoses – and carried out recognised tests to assess other children. Of the 20,000 studied, 1% had an autistic spectrum disorder, 12 times higher than the rate 30 years ago. Autism experts said it was crucial to have accurate data on how many children were affected by the disorder.

The research, published in the British Journal of Psychiatry, was carried out in three parts. The scientists first looked at cases of autism and Asperger syndrome among 8,824 children on the Special Educational Needs registers in 79 schools in East Anglia. A total of 83 cases were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children. The team then sent a diagnosis survey to parents of 11,700 children in the area. From 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported, corresponding to prevalence of 1 in 101.  This 1% rate confirms estimates from previous research.

They then sent the Childhood Autism Screening Test (CAST) to the same parents to help identify any undiagnosed cases of autism-spectrum conditions. All those with high scores, plus some who had medium and low scores, were called in for further assessment. The team found an additional 11 children who met the criteria for an autism spectrum condition, but had not yet been diagnosed.

The researchers say that, if these findings were extrapolated to the wider population, for every three known cases of autism spectrum, there may be a further two cases that are undiagnosed.

Professor Baron-Cohen said: “In terms of providing services, if we want to be prepared for the maximum numbers that might come through, these undiagnosed cases might be significant. “It is important to conduct epidemiological studies of autism spectrum conditions so that the relevant services, including education, health and social services, can plan adequate provision for all those children and adults who may need support.”

Mark Lever, National Autistic Society chief executive, said: “This is important research, which for the first time gives us an estimate of the number of people who don’t have an autism diagnosis but may be in need of support.

“Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial.”

He said the NAS was campaigning for statutory guidance for diagnosis included as part of the proposed Autism Bill to try and improve improvement in local authority and NHS services.

Source: BBC News

Call for increase in Carer’s Allowance

UK Autism Foundation backs call for an increase in Carer’s Allowance

The UK Autism Foundation has backed the call for a substantial increase in the carer’s allowance.

There are six million carers in the United Kingdom who look after family members or friends at home and often struggle to pay for their basic needs. Carers are finding it difficult to apply for the allowance because of the restrictions -you have to be caring for more than 35 hours a week. You cannot study for 21 hours or more. If you are receiving a state pension, the two benefits cancel each other out.As a result of the restrictions fewer than 500,000 people get the carer’s allowance. The UK Autism Foundation has joined many UK charities, calling on Her Majesty’s Government to increase the allowance and to place less restrictions – in order for carers to receive financial support.

Ivan Corea of the UK Autism Foundation said: ‘There are families with autism who are plunging into poverty as a result of the current economic crisis. The welfare system needs reform but parents and carers of children and adults with autism and Asperger’s Syndrome need urgent help not in ten years time but in 2009. We are calling for urgent help for parents and carers where autism is concerned – the UK Autism Foundation has been campaigning for substantial increases in tax credits, the disability living allowance and the carer’s allowance.’

Over 200 MPs of all parties in the House of Commons have signed three early day motions backing the call of the UK Autism Foundation for more support for parents, carers, children and adults with autism and Asperger’s Syndrome including increasing the carer’s allowance.

There are over 500,000 people with autism in the UK. Many parents care for children and adults with autism and Asperger’s Syndrome.Many are struggling to pay bills as a result of the economic downturn. Some are in fuel poverty. The UK Autism Foundation has been lobbying Her Majesty’s Government to help parents and carers during these difficult times.

Source: UK Autism Foundation

Well said, Mr Bercow!

I’ve just read in full the House of Commons debate on the second reading of the Special Educational Needs and Disability (Support) bill last Friday. I must highlight one particular section of the bill, introduced by John Bercow MP:

John Bercow: “Hon. Members have referred to the phenomenon of children suffering from autism. We know that children on the autistic spectrum vary greatly, but they all tend to suffer from what is commonly known in the trade as the triad of impairments—lack of social imagination, social interaction and social communication. It is important that we train staff so that we do not continue to experience the problem whereby innocently enough, but very damagingly, professionals in the education sector mistake a disabled child for a disobedient child. When we talk about people on the autistic spectrum being more likely to be excluded from school, let us be clear: that is what is taking place in so many cases. The professionals do not understand that the child is not in any sense a conventionally badly behaved child.

The understanding even of autism, which is a relatively high-profile condition, is too limited. We have to try to stimulate awareness. I was with my young son in a park in central London only a week or two ago. My son has phobias about a number of things, as children often do, and perhaps autistic children do in particular. He is anxious about hand dryers. I have always explained that they cannot do him any harm and are not dangerous, but he hates the sound that they make. When we went to take him to the loo, I said to the park-keeper, who quite properly, has to turn the key and open the loo, “Would it be okay if my son went into the disabled loo?” because I happened to know that it had no hand dryer whereas in the ordinary loo there was one. She looked completely uncomprehendingly at me and at him—I make no personal gibe at her; I am simply making a wider point—and I repeated the question. She said, “But he’s not disabled.” Again, I put it to colleagues that there is an issue of understanding. People often think that to be disabled, someone has to sit in a wheelchair, lack a limb or have a demonstrable and immediately apparent impairment, such as blindness, but children with problems on the autistic spectrum or with speech, language and communication impairments—there is often a close link between the two—can, in some cases, be disabled.”

From one parent of an ASD child to another, well said, Mr Bercow!

Read the whole debate here: Read the minutes from the second reading here

Source: Hansard,

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank you.

Government Supports Autism Bill (UK)

The Government has, for the first time, declared its support for what could be England’s first Autism Bill. The National Autistic Society (NAS) celebrated the move as a vital development for people with autism as Care Services Minister Phil Hope committed to enshrining in law a raft of new measures, via the Autism Bill, which could drive a dramatic improvement in local authority and NHS services for people with the condition

On 13th May, MPs voted yes to the Government’s proposed blueprint and time scales to improve support and in a major development the Care Services Minister gave the forthcoming national adult autism strategy extra force by adding it to the Autism Bill. The Bill now awaits its third reading, scheduled for 19th June, and with the support of the Government is likely to pass to the House of Lords.

Mark Lever, chief executive of the NAS said; “We are absolutely delighted that the Government is prepared to take decisive action to tackle the shocking lack of help which leaves people affected by autism feeling isolated, ignored and often at breaking point. The Autism Bill has passed a major and crucial hurdle on the road to becoming law but there’s still some way to go. Autism is a serious, lifelong and disabling condition, and without the right support it can have a profound and sometimes devastating effect on individuals and families, so we will keep working with the Government to ensure the Autism Bill can deliver where it is really needed.”

The Autism Bill is being championed through Parliament as a Private Member’s Bill led by Conservative MP Cheryl Gillan and was drafted by the NAS on behalf of a coalition of 15 other autism charities. She said; “I commend the Government on their commitment to transforming the lives of children and adults with autism via the support of Schools and Learners Minister, Sarah McCarthy-Fry and Care Services Minister, Phil Hope. Today is a real turning point for the thousands of people affected by autism who have been unable to get the help they desperately need and I look forward to working with the Government to make this vitally important Bill a reality.”

The Government’s measures come as our I Exist campaign found that at least 1 in 3 adults with autism are experiencing serious mental health difficulties due to a lack of help. Under the Autism Bill, the national adult autism strategy, due at the end of this year, will hold local authorities and NHS services legally responsible for providing support for adults with the condition and ensure they have clear routes to diagnosis, assessment and support. The NAS is urging as many people affected by autism as possible to take part in the consultation for the strategy which closes on the 15th September.

This boost for adults with autism builds on a previous commitment by Sarah McCarthy-Fry MP to fulfil the Autism Bill’s original demands for better support for children via new regulations for Children and Young Peoples Plans. In an important win for the wider disabled community, these would legally require local authorities to collate and share data and information on children with disabilities with other agencies, which could see a huge sea change in disabled children’s services and ensure they get the support they need to fulfil their potential in adulthood.

Source: National Autistic Society

Read more on this subject

Parents rate local authority Disabilities service at 59%

When I was at school, a score of 59% definitely meant ‘could do better’, if not ‘should do better’. But that’s the score received by 10 local authorities in England for their disability services.

The survey, completed by the British Market Research Bureau on behalf of the government was intended to measure parental experience of services for disabled children. The survey and indicator have been developed as part of the Aiming High for Disabled Children programme.

It is the first ever national survey of parents’ views of services for disabled children. Parents completed a questionnaire asking for their views of health, social care and education services for their disabled child as experienced in the past year.

Srabani Sen, Chief Executive of Contact a Family said, “The views of parents should drive local authorities and primary care trusts to ensure that the right services are available to meet the needs of disabled children and their families. This new data is vital in emphasising the key part that parents and families have to play in improving services for disabled children. We know that these services work best when parents are involved in their design and delivery, and I hope that local areas will be able to use the results to continue the good work that many of them are already doing to engage with parents and develop services together.”

The fact that they are measuring this to determine a baseline for future improvements is great, but 59%? Just over half? That’s a lot of people who are dissatisfied with the care and education their disabled children are receiving.  It is clear that this kind of rating of services is long overdue and that many local authorities need to try harder to provide a satisfactory service to vulnerable children who need the greatest help.