Not Stupid. Anna Kennedy
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diagnosed with autism in 2008 than with diabetes, cancer and AIDS combined. Despite this, in the same year, the National Autistic Society released results of a survey that suggests that the majority of local authorities in England are still failing adults with autism, and criticised the ‘astounding postcode lottery’ in provision. Amazingly, it was found that just one local authority in England had undertaken a head count of the number of adults with autism in their area. In addition, 64 per cent of councils said they did not have a named team or individual responsible for autism, in contravention of Department of Health guidelines.
Difficulties with social interactions, social communication and imagination are apparent in people with autism. These three characteristics are collectively referred to as the triad of impairments. For a child to be diagnosed with autism, they have to present a certain number of difficulties in these three areas.
Broken down, social interaction refers to difficulties experienced with social relationships, maybe appearing aloof or indifferent to others; social communication problems would display themselves as difficulties in verbal and nonverbal communication such as not understanding gestures, tone of voice or facial expressions; and imaginative difficulties are apparent as an inability to develop play in an imaginative way or a limited range of imaginative activities.
A child with autism will, like a child with Asperger Syndrome, display resistance to changes in routine or exhibit challenging behaviour; they display indifference to others and will join in play only if an adult insists and assists them.
An autistic child may display little or no eye contact or speech; is often locked into inappropriate routines; some never become toilet-trained; they will guide an adult’s hand to whatever it is they want; they will not play with other children; they will speak incessantly about a single topic such as a washing machine or vacuum cleaner; they will copy words parrot-fashion; will behave in a bizarre manner; will handle or spin objects, will laugh or giggle inappropriately; but will be able to do some things well and quickly, particularly if the task does not involve social understanding.
They will require specialised education and structured support if they are to maximise their skills and reach their full potential. They face myriad frustrations in life, particularly when they want to say something but someone else stops them from saying it, or when they want to say something but don’t know how to express themselves, or when something doesn’t happen when they expect it to.
That’s why it’s so important to have strong boundaries and structures in place so they can feel safe and begin to develop trust with others. They need to be taught to be more independent in order to develop their self-confidence and to be reassured that they do have something to offer, and that they can make a difference by reaching their academic, social and emotional potential.
People with autism have difficulty in displaying empathy and imagination; they often avoid direct eye contact or shaking hands; and may feel uncomfortable being in close proximity to others and are particularly averse to being in crowded places. They may answer rhetorical questions when in class groups with little understanding of colloquialisms.
When Angelo was diagnosed, my knowledge of other forms of autism such as Asperger Syndrome had been of limited importance to me because, as far as I was concerned, wrongly as it turned out, it didn’t affect our family. My quest for information about Asperger Syndrome following Patrick’s diagnosis uncovered the magnitude of the conditions in the autistic spectrum disorders. We hadn’t realised the scale of autism, but it soon became apparent we were not alone in caring for a loved one whose life is blighted with the associated difficulties.
I learned that Asperger Syndrome was a form of autism that affected people in the higher-functioning end of the autistic spectrum. The more I found out, the more I began to understand the difficulties Patrick faces in life. Most people have a natural ability to look at someone else and be able to tell whether they are happy, sad or angry. They can guess their age or their status and read the signals given off by the other person. It’s something most of us take for granted but, for someone with Asperger Syndrome, this is often too difficult to do. As a result, communicating and interacting with others is often beyond them.
People with Asperger Syndrome rarely have the severe learning difficulties associated with autism, and that’s obvious when comparing Patrick to Angelo. Patrick’s language skills – his vocabulary and more fluent speech – are far superior to Angelo’s, although when people speak to Patrick, as is common with people with Asperger Syndrome, he doesn’t always take much interest in what they say to him.
Many children with Asperger Syndrome are placed in mainstream schools but often they find themselves subject to teasing or bullying. That said, some cope well, achieving good progress, some even going on to further education and employment. Others, like Patrick, just cannot cope and require more specialist, individual attention. However, they are often of average or even above-average intelligence but, sadly, even today, there are few educational facilities for children with the condition.
Despite his condition, it’s clear Patrick is not stupid, although he has often convinced himself that he is. As with many who have the condition, Patrick’s obsession with dinosaurs and trains has practically made him an expert in each field and it was heartening to read that, because of this side to the condition, many like him can go on to study or work in their favourite subjects.
The more I read about Asperger Syndrome, the more it seemed I was reading about Patrick. There was his inability to understand a joke; his stilted, exaggerated language and the need to keep sentences clear and concise when speaking to him; the way he excels at learning facts and figures; his lack of social skills or consideration for the feelings of others; and his difficulty in understanding abstract concepts such as religion or literature and nonverbal signals.
People with Asperger Syndrome usually prefer their day to follow a set pattern – they do not react well to change or delays such as a traffic delay or a late train. They tend to be very punctual and, far from being a handicap in later life, these traits can actually prove to be assets when the child grows into adulthood and is seeking employment. Most employers would welcome an employee who is totally focused on their subject, hates being late, and is dedicated and reliable, wouldn’t they? Of course, all this would need to be balanced by the understanding of employers and work colleagues.
As for the causes of Asperger Syndrome and autism, well, these are still under investigation. It seems some experts believe there is no single cause for Asperger Syndrome, that it arises from a variety of physical factors that affect the development of the brain. It is not assumed to be caused by either emotional deprivation or a person’s upbringing.
Autism, it is believed, could be associated with a variety of conditions that affect the development of the brain before, during or soon after birth. Genetic factors are also considered to be relevant.
So now, at last, I was beginning to understand what Patrick, Angelo, Sean and I would have to spend the rest of our lives dealing with, but one thing common to both conditions was the importance placed on early diagnosis and intervention in order for sufferers to obtain a better chance of appropriate help and support.
Where on earth was that for Patrick?
Now, however, I can better understand why it’s so difficult to diagnose autism as the spectrum is so wide. But at least, armed with more information, Sean and I were now in a position to make informed choices for our sons’ wellbeing.
Of course, so far I have touched on only two aspects of the autistic spectrum’s disorders. There are others, though. The term semantic-pragmatic disorder has been around for nearly 15 years. Originally it was used only to describe children who were not autistic. Features of the condition include delayed language development; learning to talk by memorising phrases instead of putting words together freely; repeating phrases out of context – especially snippets remembered from television programmes; muddling up ‘I’ and ‘you’; problems with understanding questions – particularly those involving ‘how’ and ‘why’; and difficulty in following conversations.
Children with this disorder have problems understanding the meaning of what other people say, and they do not understand how