Autism - SENCology

In November 2007, the US Department of Health and Human Services made a landmark ruling that Hannah Poling, 9 years old from Georgia, had developed autism-like symptoms from regular vaccinations.

Despite this ruling, study after study continues to show that there is no direct link between developing autism and vaccinations. In fact, it has been meticulously reported that, although the US government conceded that vaccines ‘may have hurt’ Hannah and has agreed to pay her family for her care, they did not recognise a direct link between the vaccines and autism (1).

Indeed clarification was sought, and Dr. Julie L. Gerberding, director of the Centres for Disease Control and Prevention, was forced to state: “Let me be very clear that the government has made absolutely no statement indicating that vaccines are a cause of autism.” (1)

So - that clears that up, does it?

Well, in a nut shell, no; more and more cases are being taken to courts in the US, and that means one thing – that soon cases will be heard here in the UK.

I think with such public inaccuracy and ‘dodgy reporting’ it is vital we remind ourselves of some facts (2):

• No one knows exactly why but the brain develops differently in people with autism.
• Finding the cause (or causes) of autism is one of the most challenging questions facing medical science.
• The absence of a clear understanding about what causes autism makes finding effective therapies very difficult.
• It is now widely accepted by scientists that a predisposition to autism is inherited.
• It is not clear why a genetic predisposition affects some family members and not others.
• Autism is no longer attributed, as it once was, to lack of affection in the child's mother (see my former blog post on refrigerator mothers).
• Levels of autism appear to be rising, but that may be the result of improved detection, identification and diagnosis.
• There are currently no biological tests to confirm a “diagnosis” of autism. Identification of the condition is at present based solely on observed behaviours.
• Research is also taking place to establish the part played, if any, by environmental factors either prenatally or after a child is born.

I have been involved in a lot of developmental provision over the past 3 years in working with young people on the autistic spectrum in mainstream schools, and have had some considerable success. But there is no escaping the fact that there is a lot more that we do not know than that which we do know about autism.

Personally, for what it is worth, I feel certain that needs on the spectrum cannot be ‘caused’ by a post-birth event – medical or emotional. We all have needs on the spectrum, and it may be that some young people struggle to cope with their needs more after a significant event. But current research simply does not conclude any categorical definitive link between vaccines (or any other medical treatments) and the onset of autism.

Last week the first ever disability-specific law in England, The Autism Bill, made it through its final parliamentary stage and will now become the Autism Act (3). 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 cross different sectors of care and support and 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. Things are developing all the time and more recent readers of SENCology may wish to look at previous posts on the subject to see how my own thoughts and provision has developed over the last year or so?

Whatever happens in the wider areas of research, high courts and governments; I think we (SENCos and other ‘on-the-ground-professionals’) need to remain guarded against sensationalism and stick to trying our best in achieving the best, and most appropriate, outcomes for the young people we work with, and strive to give them the best life-chances we can, within the systems in which we work.

This job is never easy - but would we be doing it if it was?

(1) http://www.nytimes.com/2008/03/08/us/08vaccine.html?_r=2
(2) http://www.autismspeaks.org.uk/index.html
(3) http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2534&a=20803

The BBC program generated quite a lot of comment and thoughts through forums, postings, letters, e-mails and, of course SENCology. One of the most interesting comments was via a colleague of mine, whose daughter said after the show ‘When is the next part mum?’ My feelings exactly.

There was something missing I felt, in so far as providing the balanced view. A teachingexpertise Facebook follower felt similarly:‘Having read the blog and I must admit to looking at the programme in a less positive light. I thought at first that it was a more positive approach to young people growing up in what is obviously a strange world, but have to agree with the blog author, it seems to only look at their weaknesses. Perhaps it was the length of the programme?’

To gain an absolute balance it is important to allow enough time to cover all perspectives of an issue, and I am not sure this program allowed for that.

Another comment disagreed:‘I tend to disagree - though it could be viewed as highlighting the negative aspects of Autism, it gave the opportunity for people to have an insight into the issue, not many people really understand it’. Perhaps that is the key point here – that it did give an opportunity for people who don’t have any previous knowledge a chance to get some insight, and perhaps my comments do come from a background where I have some considerable knowledge. However, whenever presenting information to the public I think it’s important not to provide a skewed view, or influence those without an understanding of the issues.

Visitors to teachingexpertise on the whole agree more with my initial posting – possibly as those reading it there were doing so from a more ‘specialist’ background?

‘A good review of the program and highlighting that support is needed for the families makes it even more real’.

‘This is a very apt and correct view of the show’.

As with any debate or discussion in the arena of inclusion and SEN, there are political, social, moral and personal viewpoints. I am always conscious that my personal views, as outlined throughout this blog, are not everyone’s. But whatever we think about this program, our own experiences and thoughts as a whole, another colleague summed it up pretty well I think: ‘…something that makes you sit up and take notice like that can’t be bad.’

There was a fascinating program on BBC3 this week – The Autistic Me − which followed three young autistic men as they struggle to find their roles within ‘the adult world’. The focus of the documentary followed the fortunes of Tom (15), Oli (23) and Alex (24), all of whom have experienced significant barriers to being able to lead independent lives and find employment, particularly in the current climate.

Tom is a complex young man, struggling to find his role within a large family group and dealing with a complete lack of understanding from his peer group. It was also evident that many people involved in Tom’s life had limited, if any, real understanding of how to support his needs. This caused many uncomfortable moments in the film, and resulted in Tom being placed in a residential setting.

Most of the issues, in my view, were exacerbated by the fact that those people closest to Tom did not having a good understanding of how to support his needs. I am always conscious of how TV programmes can present certain views with clever editing, and while it appeared that Tom’s family were wealthy enough, with a large house and extensive grounds, there appeared to be no activities or trips away from the home to support the development of key skill areas for him. I do understand the complexities of communication and interaction within teenagers, but a pro-active and supportive set of routines are an important part of that teenage development into adulthood. I was left thinking that better family support may have provided some different outcomes here… what do you think?

Oli seems an extremely likeable young man, with a good understanding of how he can operate within certain structures and situations. Drums and history are his passions, but the show seemed less interested in these positive traits and more focused on Oli’s lack of employment after his temporary position as a book stamper at the British Library ended. Oli said that he will ‘miss the camaraderie and companionship’ from the job. This was such a positive comment, but again the edit concentrated on the negatives. I felt that Oli was a very employable young man − perhaps the programmes editor would have been better suited to offering Oli a position, rather than editing out details of his many positive attributes and clear sense of humour in such a manner that left me feeling rather ashamed and very disappointed.

The third young man featured was Alex. Alex does have a part time position working to his strengths in a security firm, and his employers appeared supportive and understanding. But again an opportunity was missed here − I wanted to hear more about the work Alex did and how that linked to his skills; perhaps compare this position with Oli’s situation? But no. Alex’s segment focused mainly on his desire to find a girlfriend. Of course this is an important part of life for a young man, and Alex’s condition would mean he was challenged in this area − however the film finished after one initial meeting with a young lady who also had needs on the spectrum, and didn’t allow any observations. I was a little concerned again with the edit and portrayal of this fledgling relationship.

However, I do think Alex had one of the most memorable lines in the show. As he got ready for his date, he said: ‘If I was any cooler, I’d be an ice cube!’

I think the awareness raised by the programme being made at all will support a greater understanding of autism and also make some people more informed. However, the narrow selection of topics covered, the editing that finished the show off, and the somewhat negatively-balanced perspective, left me a little disappointed as I felt it was an opportunity missed.

We have done a lot of work in order to ‘saturate’ our school with knowledge and understanding of supporting young people with needs on the autistic spectrum, and we have had some significant success. However it is not an easy task, being an ongoing process of constant information-sharing and support. And efforts made at school should not be the end − The Autistic Me highlighted the need for proper services in supporting young people as they leave school, and enter a world that is not as well-attuned to individual need as some supportive schools and residential environments are.

So, in conclusion – well done on raising awareness of the wider condition and more specific issues connected to it, and on challenging people’s views on the subject as even critical debate develops mentalities and moves society forward. I would, however, like to see a more balanced and informed edit in future please, BBC.