Some thought-provoking facts from the National Autistic Society:

Prevalance:

• Autism affects 1 person in every 100. That’s over half a million people in the UK, and two million people if you include their families.
  
• In the average local authority area there are likely to be 2,500 people with autism.
  
• In the average Member of Parliaments’s constituency there are likely to be 3,000 people affected by autism (people with the condition and their family members).

Education:

• Over 50% of children with autism are not in the kind of school their parents believe would best support them
  
• There are more appeals to the Special Educational Needs and Disability Tribunal about schooling for children with autism than for children with any other type of special education need. 79% of parents who have appealed to the Tribunal won their case.
  
• Over 70% of schools are dissatisfied with their teachers’ training in autism and 44% of teachers report they do not feel confident teaching children with autism.
  
• 27% of children with autism are excluded from school at least once, compared with 4% of other children.
  
• 34% of parents say that a delay in accessing the right support at school had a negative impact on their child’s mental health.
  
• 42% of children with autism have no friends (compared to 1% of other children).

Adult services:

• Two thirds of adults with autism do not have enough support to meet their needs.
  
• A third of adults with autism have experienced severe mental health problems because of a lack of support.
  
• 60% of parents say that a lack of timely support has resulted in their son or daughter having higher support needs in the long term.
  
• If local services identified and supported just 4% of adults with high functioning autism and Asperger syndrome the outlay would become cost neutral over time.
  
• If they did the same for just 8% it could save the Government £67 million per year.

Employment:

• Adults with autism say that finding a suitable job would improve their lives more than anything else, yet only 15% are in paid employment.
  
• 79% of adults with autism who are currently on Incapacity Benefit want to work.
  
• One third of adults with autism, over 100,000 people, are currently without a job or benefits.
  
• Over half have spent some time without either work of benefits, some for more than ten years.

Carers:

• In a 2009 survey, 68% of carers said they were caring for over 71 hours a week.
  
• 69% of respondents of those carers who were not working had had to give up work because of their caring responsibilities.
  
• 76% of parents and carers of adults with autism are not currently receiving any support from their local authority.

Health (including mental health):

• 71% of children with autism have at least one mental health problem, such as anxiety disorders, depression, and obsessive compulsive disorder, and 40% have two or more.
  
• 1 in every 10 children who use child and adolescent mental health services (CAMHS) has autism, that’s over 10,000 children every year.
  
• In a survey of parents whose children had accessed CAMHS, two thirds said that CAMHS had failed to improve their child’s mental health.
  
• Parents are twice as likely to say that CAMHS has improved their child’s mental health where they have had support from a professional who specialises in autism.
  
• 80% of GPs feel they need additional guidance and training to manage patients with autism more effectively.

Labels: autistic spectrum

As regular readers will know, both myself and Janine have personal interests in the rights of people on the autistic spectrum , and feel strongly that more should be done to support and understand . Not cure or experiment on. I myself have learnt lots from my aspie partner and would not seek to change or 'cure' him, but I am aware that the world is not always a welcoming place .

Given that I was shocked to read this :

Controversial treatment comes to South Florida

A Maryland medical group has started treating autistic children in South Florida with shots of a drug used for chemical castration, a therapy widely panned by mainstream experts.
The group gives children the cancer drug Lupron to stop their bodies from making testosterone, saying the drug helps expel toxic mercury and quells aggressive or sexually explicit behavior by kids with excessive levels of the male hormone.

...

But numerous physicians, researchers and therapists insist there’s no proof mercury causes autism, that Lupron removes mercury or that autistic kids have excessive testosterone. What’s more, the drug carries a risk of bone damage, stunted growth and heart trouble, and can render children impotent.
These experts contend that Lupron, costing about $5,000 a month but seldom covered by insurance, is one of many treatments that cash in on the desperation of parents trying to cope with an incurable condition for which medicine has few good answers outside of painstaking behavioral therapy.
“Not only is there no scientific backing whatsoever for Lupron treatments, there are several major concerns for the children’s health,” said neurologist BethAnn McLaughlin, an adviser to the Dan Marino Foundation autism group in Weston and the mother of two developmentally disabled children.
“These people are preying on the fears of parents. We cannot be using these children who are so vulnerable as guinea pigs in a medical experiment.”
Untested autism treatments have flourished while science struggles to explain the disorder, which disrupts the abilities to speak, concentrate, connect with people and control impulses.

...

A vocal subset of parents and activists blame vaccines, especially those with the mercury-based preservative thimerosal, which has been banned from virtually all as a precaution. Numerous studies have found no connection between autism and vaccines or thimerosal.
Lupron therapy grew from the mercury camp. Baltimore researcher Dr. Mark Geier started using the drug in 2005 on the theory – disputed by mainsteam doctors – that testosterone binds mercury in the body and that many autistic kids have high levels of the hormone.
Lupron halts production of the female hormone estrogen, which the body uses to make testosterone. The drug mainly is used to treat endometrial cancer in women and prostate cancer in men, and sometimes to chemically castrate sex offenders.
Geier’s promotional materials said he has treated hundreds of children with Lupron and has launched nine ASD Centers in eight states. In his latest, he teams with Dr. David Clayman, a Boca Raton radiologist who has an autistic teen son and is opening an ASD office beside his MRI center in Tamarac.

...

Lupron critics said autism parents may not understand the dangers.
The drug is not approved for children – except a rare few with premature puberty – because it can impair bone development crucial to growth, said Dr. Gary Berkovitz, chief of pediatric endocrinology at the University of Miami medical school.
It’s not recommended for people with heart disease, kidney disease, asthma, depression or seizures because it can worsen those conditions. Autistic children are prone to seizures.
“It has not been tested so there’s no way to know if it has adverse effects in the long run,” Berkovitz said.
Said neurologist McLaughlin: “We have very significant concerns about irreversible damage to sexual function and the brain and sex organs of these children.”

...

McLaughlin said parents should stick with slow and difficult but proven therapies. Teens struggling with sex can benefit from counseling, rewards for positive behavior, jobs or activities to keep them focused and, if needed, drugs to treat anxiety or sleep issues, she said.
“What we know works is a rough course,” she said. “Yes, we can do better. But what we don’t want is for families to lose faith in science and go off with people who … are violating the first rule of being a doctor, which is ‘first do no harm.’”


This is absolutely appalling and I am shocked that this is allowed in the US. I can understand that parents may be frustrated and that there may not be enough support in place , but to do this to your child is abuse. The parents fears are being exploited for money and the young person has no say in what happens to their body. It is about control rather than looking at longer term ways to help someone adapt to a neurotypical world. And to perhaps question whether that world is necessarily the best way to do things . This is truly a scary way to treat people and does nothing to work with difference ,understand and learn. It is about a quick buck . Aspies have the same rights as anyone else and this is a breach of them.

Labels: autistic spectrum

I have sent the following e-mail to the Science Museum, and a similar one to the Natural History Museum ...

Last Sunday, I visited the Science Museum with my three sons, aged 11, 8 and 6. We enjoyed our visit very much.

However, my son Joe (8) experienced a lot of difficulty with the visit. Joe has Asperger syndrome. He finds crowds hard to cope with and is hyper-sensitive to loud noise. His condition also means that he struggles to understand social protocols concerning queueing, taking turns etc, and becomes easily distressed. He became upset several times during the visit, including in the Launchpad [children's section with lots of hands-on stuff], due to sensory overload, crowding and social pressure. Joe's distress also made the visit difficult for his brothers. The Museum is understandably very popular and always busy, meaning that Joe would always be vulnerable to these problems on any visit.

I suspect that other visitors with special needs - both children and adults - might experience similar difficulties (and some will experience different difficulties). Others may feel unable to visit the Museum at all due to anticipated problems.

I would like to suggest that on, say, one Sunday each month, the Museum opens earlier for disabled visitors and their families only, to enable them to enjoy the Museum's excellent exhibits and facilities in a more quiet and relaxed setting. For example, I firmly expect that Joe would enjoy and benefit greatly from the Launchpad without large numbers of other children jostling to get to the many exciting activities. You could perhaps provide specialised staff support during these sessions and other appropriate facilities eg. parking.

Please give my proposal serious consideration and let me know what you decide.

Yours
Janine Booth

Labels: autistic spectrum

Good to see a repreive for Gary McKinnon, the man with Asperger syndrome under threat of extradition to the USA for computer hacking.

It's just a temporary reprieve though, and rather than reflecting credit on the new Home Secretary, it reflects a great deal of discredit on the old one.

Labels: autistic spectrum

Last night I watched The Autistic Me: One Year On, one of a recent rash of programmes about the autistic spectrum, most of which have been pretty much OK.

It updated viewers on the fortunes of Alex, Tom and Olly, three young autistic men. Alex (pictured) is in his early 20s, has Asperger sydrome, works part-time and wants a girlfriend. He found one through internet correspondence last year, and he and Kirsty - also autistic - have developed a successful, if unconventional, long-term relationship. What is quite touching is that their absence of social inhibitions has allowed them to be authentically romantic with each other. Social protocol and embarrassment is evidently not all it is cracked up to be.

A year ago, Tom was perhaps the least likeable of the three, a surly teenager who had to stay in a residential unit when his family could no longer cope. And at the start of the update programme, he was still surly, and was distressed by his parents' recent decision to up sticks and move 300 miles to Cornwall. It is hard enough making friends when you are autistic, but having to start all over again at the age of 16 was truly daunting. However, Tom managed it, flourished through a college course in music, and is now in a band with peers who accept him for who he is.

Olly is a warm, funny and clearly very competent high-functioning autistic (and diabetic) twenty-something. Having made a huge success of a temporary job at the British Library last year, he has struggled to find employment. Olly's update was less life-affirming than the other two, and shows the appalling discrimination that autistic people face from employers. Helped by some scheme to get work, Olly did a placement with Asda, excelled at the work, and was apparently promised a job ... only for Asda to keep him waiting without any contact for months on end and then offer him only 10 hours per week. He told them to poke it.

So there you go: With the support of friends, family and education, young autistic adults can contribute massively to society and have rewarding lives. But then bosses poke in and wreck it. And government schemes that claim to help disabled people into work seem instead to pander to thsoe bosses, supplying them with free workers for a period while demanding nothing meaningful in return.

Programmes like this give me a glimpse of my son Joe's potential future. Hopes and fears.

And I couldn't help but notice the guys' mothers too! Tom's appeared to have little faith in him, and was surprised when he achieved so much with music and friends. Alex's was devoted and loving, but seemed a little clingy, saying that she didn't want him to leave home and be independent. And Olly's was supportive and content that he lives in supported independent housing nearby, so is close but independent. And I don't mean any of those comments as judgemental as they probably come across, because we all do our best and none of us are perfect parents.

Labels: autistic spectrum, television

New research appears to have confirmed what many of us have long suspected: that many kids facing exclusion from school may have undiagnosed autism.

Here's the press release from Media Newswire:

Children at risk of exclusion from school could have autistic behavioural traits, according to new research.

The study, published in the April issue of the British Journal of Psychiatry, suggests that up to a third of children who are at risk of being excluded from school for disruptive behaviour could have undiagnosed social communication problems of an autistic type.

Researchers from the UCL Institute of Child Health (ICH) recruited 26 persistently disruptive children aged 6-13 years old from primary schools in the London borough of Hackney. 16 of the children had been excluded from school at least once before, and 10 were considered by their teachers to be at high risk of exclusion. The researchers interviewed the children’s parents, and the children were given tests of IQ, attention, social cognition and theory of mind.

The researchers found that 9 of the 26 disruptive children (35 per cent) met clinical criteria for an autism-spectrum disorder. However, their social communications had not been detected by a professional.

Lead researcher Professor David Skuse,head of behavioural and brain sciences at the ICH and manager of the UK’s National Centre for High Functioning Autism at Great Ormond Street Hospital NHS Trust (GOSH), said:

“Our research shows that many children who get into trouble at school are being labelled ‘disruptive’ or ‘aggressive’ by their teachers and peers, when in reality they are displaying behaviours that are consistent with traits we see in clinically diagnosed autism. The children involved in our study have been recommended for appropriate treatment and their educational needs should now be recognised and adjusted accordingly.

“Teachers should be supported to identify these children before they are unfairly excluded from school and they miss out on the education and learning opportunities they deserve.”

Labels: autistic spectrum, schools

So you thought that a person with a disability would be entitled to a disabled parking badge (Blue Badge)? Wrong! They have to have the right kind of disability, apparently.

Said badge gives you a range of parking concessions, including exemption from parking and congestion charges, and the use of marked bays. People with severe mobility impairments will get the badge, but people with other disabilities which might make it hard or impossible for them to use public transport will not necessarily get it.

We applied for a Blue Badge for Joe. His Asperger syndrome makes it difficult for him to travel on public transport, especially because he has an aversion to loud noises, and because he gets very distressed when unexpected things happen, such as service disruptions (which, after all, happen quite often). His behaviour when distressed can be alarming, possibly even dangerous to himself and others.

Joe would really enjoy a trip to London Zoo, for example, but it is an arduous journey by public transport, and there is no parking nearby apart from a car park exclusively for Blue Badge holders.

But Hackney Council refused our application. Apparently, because Joe does not have a severe mobility impairment, he can not have the badge. 'Behavioural difficulties', the letter explained, do not qualify him. Why?! Are they irrelevant to a person's travel needs?! Er, no.

It seems to me that the Blue Badge scheme is far too narrow in its scope, and does not recognise the range of disabilities and their effect on people's lives and experience. The purpose of a Blue Badge, says the Department for Transport is to enable someone to park as near as possible to where they are going, as a Blue Badge gives them access to disabled parking bays next to the entrance of, for example, the supermarket or railway station you were using. Hence, it is given to people who would struggle to physically get from the further end of the car park to the supermarket door. Fair enough: it is definitely needed in these circumstances.

But what about people like Joe? People who do not have a physcial impairment, but who nonetheless have great difficulties using public transport.

Since the Blue Badge was introduced, parking charges have risen and congestion charges been introduced, which means that for people whose disabilities make it hard for them to use public transport, travelling by car to certain venues has become prohibitively expensive. Without the Badge, Joe's life experiences are unnecessarily limited; with it, they will be enhanced. That alone should be reason enough for people with conditions such as his to have the badge.

Labels: autistic spectrum, disability, transport

Today, I received confirmation in the post that our family will not receive any help from Social Services. This is because we are not beating our child.

Our family would really benefit from some respite care. We need to provide our son Joe, who has Asperger syndrome, with structured activities designed for him to improve his social skills, manage his anger, understand others' feelings etc. It is hard to do this with two other children to look after. It would help a great deal if the other two could be taken out for a while, or if Joe could have a weekend away once in a while so that his brothers (and parents!) could have a break fom his needs dominating our home life.

The only way to access such respite care from the state is via Social Services. So we accepted a referral and had a visit from a social worker before Christmas. While he was very sympathetic and could see the benefits of our request, it was clear that due to shortage of resources, Social Services would pretty much only authorise respite care when the child(ren) were in imminent danger of abuse by their parents.

Whatever happened to the idea that if you help families before they get to that stage of dysfunction, you might actually prevent things from getting that bad? Or even - what about the idea of Social Services for everyone that needs them, not just those who (are about to) abuse their kids?!

Labels: autistic spectrum, social workers

Usually, I try to write rational, well-argued posts on this blog.

But words fail me on hearing the news that Alan Johnson has refused to stop the deportation of Gary McKinnon, the man with Asperger syndrome whom the US "justice" system wants to lock up for 60 years for straying into their security system while hunting UFOs.

Cold-hearted, gutless tosser.

Labels: autistic spectrum, Friday Fuckwit

It is a while since I blogged about Asperger syndrome, and I return to the subject with a little trepidation. I want to write about two specific types of challenging behaviour and how hard they are to cope with. It is hard to do so, because I really don't want to slag off my son in public, so please note four very important qualifications. First, when he is not displaying these behaviours, Joe is a charming, bright, loving and lovable seven-year-old. Secondly, he rarely if ever displays these behaviours at school or in a one-to-one situation with an adult outside the home, in which he is nearly always really good company: he seems to reserve it for groups of family and friends. Thirdly, the distressing behaviour I am about to describe is not "his fault", because - as I hope I will explain - it is a result of his having Asperger sundrome in a society that is not geared to support or accept him. And fourthly, it's not like non-aspie kids are little angels, is it?

I have decided to post on the subject despite my misgivings, as my previous posts on Asperger's have prompted intelligent and sensitive debate from this blog's readers that has been of practical help to me and my family.

Joe is very prone to extreme anger. Things that would seem trivial to other people can set him off into a seemingly-uncontrollable rage, which can last for a long time. Triggers include: someone else "going first" eg. through a doorway; a refusal of a request (eg. to eat a cake just before we are about to have tea); a game not going exactly the way he wants it to; etc.

Joe's rage occurs when something happens that he does not expect or does not want to happen, as he lacks the flexibility to adapt to unexpected events. As usual with autistic traits, the sense of anxiety and anger at sudden changes is something that I recognise in myself and often see in others - but in Joe, it is hard-wired and on a far greater scale.

We have become quite skilled at minimising the occurrence of trigger events, but it has proved impossible to eliminate them altogether. And in any case, even if it were possible to eliminate them at home, the outside world is still going to provoke him.

I have bought a couple of books that I hope will help - "The Incredible 5 Point Scale" and "A Volcano in My Tummy: Helping Children to Handle Anger". I've also been recommended "When My Autism Gets Too Big", but have not got hold of it yet. I know that I need to work through methods like those presented in these books with Joe. I know that if I can teach him how to handle his anger, he will make progress.

But the problem with this strategy is that it will take some time to have the desired effect, and in the meantime, Joe's anger make life very difficult for our family. In particular, he physically assaults his five-year-old brother Harrison several times every day, after just the slightest "provocation" eg. wanting to watch a different film, walking through a door first, laughing when Joe doesn't want him to, etc.

When angry, Joe can also scream at the top of his voice, shout obscenities at the person who has upset him, threaten even more extreme violence, and generally make it impossible to carry on with daily life.

Joe has also developed another form of challenging behaviour. Several times a day, he will act in a deliberately silly way (pissing about, if you like), in order to upset family members or disrupt what he is supposed to be doing. This is very distinct from behaving in a silly way in order to have fun, as if you laugh along with him, he suddenly becomes very serious and tells you to stop it.

It appears that he derives some enjoyment - perhaps fascination - from seeing people upset or angry, and so purposefully provokes that reaction. Joe particularly targets this behaviour at his older brother Alex (age 10). This may be a misguided attempt to entice Alex to play with him, but I am increasingly convinced that it is an attempt to provoke an angry reaction.

Joe also behaves like this when I am dressing him, which makes the task virtually impossible and usually succeeds in making me angry.

I am working with Joe to address this behaviour, encouraging him to write and draw, looking at concepts such as "Funny or Not Funny?". Over the last year, we have worked hard at recognising other people's emotions in their facial expressions, using resources such as the book "Teaching Children With Autism to Mind-Read" and the DVD "The Transporters". While this has been very successful in teaching Joe to recognise emotions in a factual sense, he still lacks empathy. Therefore, if his behaviour makes someone angry, he can recognise that they are angry, but will not grasp that this is a bad thing and that he should stop the behaviour that is causing it.

This all begs the question about what support the state should provide, and what societal changes might minimise these difficulties. I intend to address these points in a future post (I might get back to the weekly aspie posts, you never know), but in the meantime, I would appreciate any comments or ideas, whether sympathetic or empathetc, observational or analytical, political or practical.

Labels: autistic spectrum

Regular readers may have noticed that myself and Janine sometimes write posts on aspergers and we get frustrated at the often negative press. Well here is something positive :

... Clay Marzo, who exploded on to the scene at Puerto Escondido in Mexico last month with his first pro victory, and is now being dubbed the most naturally gifted surfer of his generation, has a high-functioning form of autism called Asperger's syndrome.

The condition makes it difficult for the 20-year-old wunderkind to interact with other people. He finds crowds unnerving, conversation perplexing, and is unable to "read" emotion on someone's face. In social situations he is often – if you'll pardon the expression – a fish out of water.

Yet Asperger's is also the secret of Clay Marzo's incredible sporting ability. According to an acclaimed documentary called Just Add Water, it actually helps him succeed in the glamorous field of professional surfing. He is a unique talent because of the condition, rather than despite it. Some believe it could eventually make him the greatest surfer in history.

Some people with Asperger's are genius mathematicians, scientists or musicians (many believe that Albert Einstein, Mozart and Isaac Newton had it). Others have brilliant memories, such as Dustin Hoffman's character in the film Rain Man. Marzo may very well be the first person with the condition to have developed a genius for surfing.

"He'll have a schema of many waves that he's ridden before, so he's able to predict what to do in that situation," adds Dr Attwood (expert on aspergers SB). "His brain disconnects from everyday functions, and becomes one with the wave: he'll intuitively know what the wave's doing, so he'll anticipate that, and be ahead of everyone else."

Marzo's style of surfing is creative and spontaneous. Unlike most professional surfers, he doesn't plan different manoeuvres in advance, but instead adapts instinctively, suddenly spinning his board into reverse, perhaps, or flipping into mid-air to land audacious 360-degree turns.

The article highlights the difficulties he had before diagnosis and how he now gets support to make sense and navigate what is a neurotypical world.

I particularly like this quote :


"The main treatment for Aspergers is self-understanding and self-acceptance," adds Dr Attwood. "The problem is that people will talk of suffering from it. No. You don't suffer from Aspergers, you suffer from other people. I want people like Clay to be admired, for people to say they've got talent. Don't feel sorry for them, applaud them."

Exactly.

Here is a trailer for the film:

Labels: autistic spectrum

Holiday reading this year was Mark Haddon's 'The Curious Incident of the Dog in the Night Time', which had long been on my to-read list following great reviews, recommendations from friends and general fuss.

I don't want to give away too much of the story to those few of you who have not yet read it, as unexpected developments are among the book's strengths, giving it a suspense plot that, for the most part, keeps you reading so that you take in the more important emotional plot. Suffice to say that it is a murder mystery in which the victim is a dog but the real story is less that of deceased canine Wellington and more that of narrator Christopher. The solving of the Whodunnit does not simply answer one challenge but launches us into another.

I could not read this book as anything other than what I am: the parent of a boy who, like teenager Christopher, has Asperger syndromw. I saw much of Joe's outlook on life in Christopher's: his structures of thinking, his bewilderment at the strange ways in which neurotypicals speak, his desire to shut out the world and protect himself from mental overload, his use of reasoning and rules to work through confusing and unfamiliar situations. But there were other aspects which did not seem like Joe at all. I had to remind myself that this is OK, that this is not a handbook about Asperger syndrome (in fact, it does not even mention the term), nor does it claim to describe or speak for aspies in general. It is a novel about Christopher.

At times I feared for Christopher being portrayed as a circus freak, or an object of mirth, or a danger to himself and those around him. Or that he might reinforce some unhelpful stereoptypes about aspies - for example, that they are incapable of lying or of understanding jokes. I have not read responses by aspies to the book, and it would not surprise me to find criticism alongside praise. Personally, I thought that 'The Curious Incident ...' just about managed to stay on the right side of the line and to re-balance itself just when I worried that it might tip over.

The book shows the joys and challenges that life presents to a teenager with Asperger's. It also shows powerfully how hard it is to be a parent, and how easy it is to do or say the wrong thing. It made my feel simultaneously sympathetic to Christopher's parents, angry with them for their mistakes, and rather chuffed that I'm doing a better job of it.

What struck me most, though, were the similarities of Christopher's thinking not just to Joe's but to my own. I sometimes share Christopher's frustration at the inaccurate and confusing ways in which people talk, his desire to curb his own runaway thinking, and his fanaticism for maths, science and the natural world. Asperger's syndrome is not so much a whole different way of thinking, but a condition in which ways of thinking that occur occasionally in most of us are hard-wired in the aspie.

'The Curious Incident ...' will probably be thought-provoking for people with Asperger's in their life. It will almost certainly be enlightening for those without. But it is a novel, not a textbook, and as it goes, a pretty good read: a murder mystery with engaging, believable characters, and everyday matters observed keenly and made interesting.

Labels: autistic spectrum, books

An Employment Tribunal has awarded £78,000 to Andrew Beck, whose employer bullied him because of his Asperger syndrome and learning difficulties.

As outlined in this article in the Manchester Evening News, Mr Beck worked without problems at a golf club for 12 years before a new manager arrived and started to make his working life a misery. The manager made Andrew wear bright clothing because of his autism, and banned him from using motorised vehicles despite his job involving moving lots of heavy equipment around. He ridiculed and humiliated Andrew, for example giving him a child's toy as a Christmas present.

Finally leaving the club's employment in 2007 because of the effect of this systematic bullying on his health, Andrew took an Employment Tribunal claim for constructive dismissal and disability discrimination, and was successful.

Although it is good to see that Mr Beck has won his claim and will be compensated, and that the employment law system has decided that this kind of management bullying is unacceptable, the case also shows up flaws in employment law. It is beyond the power of the Tribunal to compel the golf club to either reinstate Andrew or to discipline the bullying manager, Nick Marner. £78,000 does not sound much to me for being routinely abused and forced out of your job after 21 years service (in fact, it is less than a third of a sum described by Boris Johnson as 'chickenfeed'). Given that such awards take into count your lost earning capacity, it suggests to me that Andrew's job was not exactly well-paid.

But hey, Mr Marner is "going on a man-management course", so that's OK.

Labels: autistic spectrum, workers' rights

Last October, I reported on this blog that Nicky Reilly had admitted an attempted suicide bombing and discussed the conclusions that people might draw about his actions and his Asperger syndrome. Reilly additionally has a learning disability.

His mum quite rightly pointed out that Nicky ought to be receiving the attention of the caring services rather than the prison service. But today we have the news that he has been sentenced to life in prison for attempted murder, to serve a minimum of eighteen years.

I didn't sit through the court proceedings, and I hold no brief for Islamist bombers and those who excuse them, but we have to ask ourselves Is this the best that our society can do?! If the best that our judicial system can do with someone on the autisitc spectrum and with a learning disability giving him a 'mental age' of ten is to lock him up in a prison for the rest of his life, then something is very very wrong.

Labels: autistic spectrum, islamists

Today's Guardian leads with the headline, New research brings autism screening closer to reality: Call for ethics debate as tests in womb could allow termination of pregnancies.

Response number one: every woman should have the right to terminate a pregnancy for whatever reasons she may have. It is vital that the 'ethics debate' that the Guardian calls for does not pit the pro-choice movement against the autism community. It is possible - and very necessary - to defend to right to terminate a pregnancy while also opposing the idea that detection of autism in a foetus means that you necessarily should have an abortion.

The National Autistic Society says that none of its members say that they wish it had been possible to know that their foetus would be born an autistic child so that they could have a termination. That's a heart-warming read, and certainly one that I personally echo. But actually, it's a slightly unfair question. Very few people could look at their kids and say "I wish I hadn't had you" - whether they would have made the decision not to go ahead with a pregnancy before the child was born, before s/he laughed, cried, cuddled you and became part of your life, is another matter.

The NAS also says that some of its members would have appreciated knowing that their child would be autistic before birth so that they could prepare and arrange support. Point taken. However, if society educated the population as a whole about autism, if everyone knew about it and support was readily available to everyone who needed it, then perhaps you wouldn't need to know specifically that your child would be autistic.

One issue not mentioned in the Guardian article is that knowing that your baby is autistic may inform your decision as to whether - or when - to have further children. When we decided to have a third child, we did not know that Joe was on the autistic spectrum, and his younger brother was born when he was two years and one month old. Autism - particularly at the 'higher-functioning' end of the spectrum where Joe's Asperger's lies - is virtually never detected at so early an age. There is no way in the world I would be without my gorgeous Harrison, but I can see a point that other families in similar situations may decide against, or may postpone, having another child if they knew their kid was autistic.

I worry about how these new findings may be used by some to whip up momentum to 'eliminate' autism. But I can not regret the advance in understanding that has apparently been made. Increased knowledge can only be a good thing: it is the interpretations and uses that may be attached to it that may be problematic.

This is all assuming, of course, that the Autism Research Centre's findings are based on credible science - unlike the 'MMR causes autism' nonsense that caused a panic a few years back, led to loads of kids being put through the unnecessary distress of three separate injections, and now has its authors facing GMC charges of serious professional misconduct.

The ARC's research is based on studying the amniotic fluid of the mothers of 235 children, and showing that consistently, the mothers of those kids who showed autistic traits had high levels of testosterone in their amniotic fluid. This dovetails neatly with the much higher incidence of autism amongst boys than girls (it is apparently 4:1 for autistic spectrum disorders in general, 9:1 for Asperger's), and with the idea that autism can be conceptualised as the "extreme male brain". I am not in a position to subject the research to rigorous scientific examination, but some people are, and they most certainly should.

I don't think we have a problem with prenatal screening for disorders. I don't see many socialists or feminists demanding, for example, that amniocentesis be scrapped as unethical because it leads to the abortion of foetuses with Down's Syndrome. A woman should not be forced to have a Down's child who she feels she can not cope with; but equally, a woman who does choose to have a child with Down's should receive full support with her parenting, and the child should receive full support too.

However, there is a further issue with autism. We would generally be in favour, where it is possible, of the elimination of a disability or illness. Not the elimination of disabled people, but of the disability. Where medical science has brought an end to illnesses such as smallpox, where it has made some types of blindness eg. cataracts, curable, that is a good thing. But do we actually want to eliminate autism? Simon Baron Cohen asks a pertinent question in the Guardian article, "What would we lose if children with autistic spectrum disorders were eliminated from the population?"

As we have repeatedly argued on this blog, autism has positives as well as negatives. Perhaps this is more so at the 'high-functioning' end of the spectrum, but the screening will not reveal the autistic child's location on the spectrum, and in any case, as Prof Simon says, "ethically the same issues apply wherever the person is on that spectrum".

If we eliminate blindness, then everyone can see. If we eliminate autism, though, we risk eliminating insights and talents that come with the condition along with the undoubted difficulties.

Labels: abortion rights, autistic spectrum

The Transporters is a DVD aimed at kids with autistic spectrum disorders, designed to help them learn to understand other people's emotions from their facial expressions.

The Transporters are vehicles of various types, each of the sort that travels along defined lines ie. tracks or cables - predictability is important to autistic kids. It's a bit like Thomas the Tank Engine, with the important difference that each has a real face.

Each of the 15 episodes focuses on a particular emotion, with the face showing that emotion in response to events. We see the characters being happy, sad, angry, disgusted (love that one), worried, afraid, unfriendly, jealous, excited, surprised, tired, proud, sorry, and perhaps a couple I've forgotten. Alex thinks they should be pissed off too. The characters do not speak at all - the only speaking is done by narrator Stephen Fry, who tells us what is happening and what the characters are feeling.

After each episode, there is an optional quiz, testing the kid's understanding of what facial expressions mean and what a character might feel in a particular situation, with the choice of 'easy' or 'hard' versions of the quiz.

In my humble opinion, The Transporters works a treat. After several weeks of watching it regularly, Joe definitely looks at people's faces more, and works hard at figuring out how they are feeling. He thinks more about how a person might feel in any particular situation. This is important progress. However, he still needs to go the step further and work out that sometimes his actions might have prompted the particular feeling, and that if it is a negative feeling, then he should desist from the behaviour that prompted it (eg. spitting at mummy makes her angry, so don't spit at mummy).

A couple of minor niggles ... There are six male characters, two female. It should be equal. Although this proportion does reflect the incidence of ASDs between the two genders, that is not the point - it needs to reflect the genders of the faces whose expressions the autistic kids need to figure out. There are two black characters, but no Asian, Arab or mixed-race. And none of the characters have glasses (that's not an issue of being representative, but of learning to read emotions in eyes behind lenses)!

I would thoroughly recommend The Transporters to parents of autistic kids. I would also thoroughly recommend that the government fund every autistic child to be given a free copy when they are diagnosed, rather than having to fork out thirty quid to buy one.

Now, what was I saying last week about access to services for autistic kids being biased against working-class families?

Labels: autistic spectrum

This year, I have successful claimed two very important rights for my son Joe - who has Asperger syndrome - and our family. Firstly, his Statement of Special Educational Needs, and secondly, Disability Living Allowance. The first means that he now has his own Teaching Assistant throughout the school day, playtime supervision and extra specialist teaching. The second means that we get sixty-odd quid a week towards the extra expenses of having a kid with his special needs.

But each claim was a struggle up a very steep hill, which not only used up a lot of our time and energy but also made me realise that many people in a similar situation to us will not be getting these rights.

To apply for a statement, you have to fill in a form and write about your kids' condition and needs. It helps if you can get other people to write supportive stuff too, so we enlisted Joe's speech and language therapist, child psychologist, consultant paediatrician and inclusion co-ordinator at his playscheme. The initial result we got was a 'high incidence' statement - so called because it rules that your kid's special needs are so common that the school should be able to deal with them within its existing budget. So that's no good to anyone. In fact, as a retired school teacher mate of mine said, it can be worse than nothing, as the kid gets all the stigma of having a statement but none of the support that comes with it.

So we had to appeal. We wrote more text, and enlisted more people to write more text. The appeal succeeded, and Joe got a 'low incidence level 3' statement, which gives him the support listed earlier in this post.

I strongly suspect that our local education authority - Hackney's Learning Trust - has a standard practice of offering crap statements all the while planning to improve them on appeal. Perhaps they are hoping to save cash with the families who are too poor, unsupported, vulnerable, foreign, lacking in confidence, inarticulate, pressed for time, stressed out or just plain grateful for the slightest support to summon the strength to appeal.

Drafting an appeal is, after all, second nature to me and Joe's dad, as we are both union reps who have lost count of the number of appeals we have drafted for members.

The application form for Disability Living Allowance is about 80 pages long. I submitted it online, and had to come back to it day after day after day after day, wading through the sections, reviewing what I'd written, adding things I'd overlooked, making sure that it really did accurately describe Joe's needs, and answered all their questions, including the several confusing ones. When my partner announced to the family support group that we attend that we had successfully claimed the benefit, he got a round of applause, as many of the other families there had been defeated by the application process.

In my experience and opinion, the system is biased against poor and working-class families.

Labels: autistic spectrum, benefits, education

Some of you may have missed my regular Aspie Sunday post yesterday, on account of the fact that I didn't do one. This is because yesterday, the demands of parenting an child with Aspergers and his two brothers left me too shattered to turn my computer on let alone post anything.

So, if you like, you can consider this an open thread on managing challenging behaviour.

Labels: autistic spectrum

Links to posts from my previous blog on the Workers' Liberty website on the subject of Asperger's and the autistic spectrum:

• Fringe benefits - but what about core services? February 2007
  
• Youngsters with special needs? Give 'em an ASBO! Feburary 2007
  
• Ruth Kelly sends her special needs kid to a private school January 2007
  
• George Osborne quips that Gordon Brown might be 'faintly autistic' October 2006

Labels: autistic spectrum

As promised two weeks ago, this Sunday's post on the subject of Asperger syndrome is about the process of getting a child diagnosed.

As we left it on that occasion, Joe's dad and I had a strong feeling that Joe had AS, having become increasingly concerned about his behaviour and frequent distress, and having read this description of Asperger's which very accurately describes Joe.

His teacher (he was in nursery class at the time) also had sufficient concerns about Joe to have filled in the necessary form. One of her concerns was that he flatly refused to join in 'circle time' (the first child in twenty years of the school's nursery to do so!); another was that he frequently mistook excitement for anger in adults - if she praised something he had done, he would flinch as if being told off.

When I said to her, "He's autistic, isn't he?", she was obviously relieved that I had worked it out and she had not had to break this news to me. She then told me that these days, we call it "being on the autistic spectrum".

The next step was to get our GP to refer Joe for diagnosis. This involved attending the Complex Communication Clinic at the Donald Winnicott Centre in Hackney (which has since been replaced by the all-new Hackney Ark). Joe, John and I all spent time with a Consultant Paediatrician and a Child Psychologist (called, ironically enough, John and Janine). They observed his behaviour and listened to lengthy testimony from us.

They then gave him some tests, the nature of which are quite illuminating about autism and Asperger's. It is important to recognise that they judged Joe's responses not as 'right' or 'wrong' but as 'typical' or 'atypical'. Some examples:

• They asked Joe, "What is a bicycle?". He replied, "Two sticks, two wheels, three seats". (My bike at the time had a child's seat for Joe and a baby seat for his brother Harrison.) Atypical. Most kids would say, "Something you ride", but the Asperger's kid is more likely to see an object in terms of its components rather than its function. Not wrong, just different - and rather handy if you become a bicycle designer in later life, I'd have thought.
  
  
• They asked Joe, "What is an umbrella?". He replied, "A carrot and a plastic bag". Now that's a bit harder to fathom, but as I explained to them later, he had been playing with Sticklebrix a lot lately, often used the long orange one to represent a carrot and the square white one to represent a plastic bag, and used the long orange one and the square white one together to make an umbrella. Logical, but most definitely atypical. Not wrong, but different - but so different that it is barely comprehensible to anyone who does not know the reasoning behind it. So we can see where those communication difficulties might come in.
  
  
• They showed Joe a photo of a boy with a spider landing on his head and asked him how he thought the boy would feel. Joe replied, "Angry". Atypical: most kids say "frightened". But isn't it actually more logical to be angry with a spider for landing on your head than to be scared of a minute creature that can cause you no harm?!

In all, Joe had a general development assessment, play-based assessment and cognitive assessment at the clinic, plus a speech and language assessment and classroom observation at his school. None of these, as far as I can tell, caused him any distress.

By this time, he was in Reception class and had an Individual Education Plan (IEP) - a written plan which a school can give to a child with problems, issues or special needs, with or without a particular diagnosis.

Joe's diagnosis arrived on the day that his dad was elected National President of the RMT, in November 2006. It is an 8-page document describing their various investigations and observations. The key passage reads,

Joe has been assessed formally and informally over time and in different settings. On the basis of the typical developmental history, clinical observation, information provided by his school and formal assessment of language and cognitive skills, it is our opinion that Joseph's difficulties with social interaction, communication and behaviour are best described as being within the autistic spectrum.

His early language development appears to have been normal and on the basis of his current functioning and the absence of a general learning difficulty, we feel that Asperger's Syndrome best describes Joseph's profile within the autistic spectrum.

Labels: autistic spectrum, children