About a year ago a close relative was taken to one side when she went to pick up her 3 year old son from nursery school recently. His teachers told her he was not mixing or inter-reacting with the other kids in his group and preferred to keep himself to himself. Also he seemed to get lost in his own world and physically some of his gesturing was not typical of “normal” development. All this led to the suspicion that he could be showing some of the characteristics of early stage autism.
Not so long ago autism was only considered in its most extreme form. Now they call it Autistic Spectrum Disorder and at least they classify the condition acording to the degree of severity.
Life changing afflictions of the past such as plague, cholera, typhus have all been conquered, at least in the western world. They are recognised as medical conditions and the means of prevention and cure are well understood, and effective. Old age dementia, Aspergers and autism are the three great fears of our age.
As you can well imagine his parents were totally distraught. Up to that time thoughts that any of the family could be autistic were as remote as the other side of the moon. Mikey did seem to be a bit obsessed with certain objects and some of his gestures were unusual, but none of us suspected that these traits were any more than temporary stages of growing up which he would pass through in due course.
We tried to be reassuring, and said that there was nothing about Mikey that seemed out of the ordinary. But the school recommended that Mikey should be assessed independently, and over time it became clear, yes, he was diagnosed as being on the Spectrum. Mikey’s condition was considered to be high level – in other words his behaviours are not extreme.
It’s hard to know what to say or do. We can only watch from the sidelines and be supportive when we can. The family is obviously under a lot of stress, and the strain is constant. Mikey’s older sister is starting to resent how much attention he gets compared to herself, and how everything seems to revolve around his needs. Hopefully these quite natural feelings can be managed.
The word syndrome suggests that the clinicians are looking to take ownership of the condition, but so far medical science is yet to come up with an explanation or cause let alone a cure.
I read recently that as many as one child in every hundred is affected by autism. That seemed an exaggeration but was born out by another report stating that there are now more than 350,000 autistic adults, of which 85% are out of work. Outcomes are not encouraging. The cost of long term financial support from the benefits agency will be enormous.
In the USA 1 in 65 children are thought to be afflicted. This is becoming a world-wide epidemic, but so far no-one has been able to come up with any answers.
Mikey has been undergoing a programme of one to one therapy and seems to be progressing at a more normal pace. However, this is extremely expensive, and no financial support from the NHS or local authority is available. He has been getting as much care and attention as possible. The strain on his parents will continue indefinitely. What it is like for parents of children who show more aggressive symptoms of the Spectrum is beyond imagining.
One year on, and reports are becoming increasingly optimistic. It has even been suggested that he could rejoin mainstream education in the near future. If so, that would be a huge improvement in all our expectations compared to a year ago. The financal and emotional cost to the family has been enormous so we are all keeping our fingers crossed for him.
There are lots of associations and support websites dealing with various aspects of the Spectrum. Many of these are charities, but sadly none report any real progress in identifying a cause or suggesting a permanent solution.
Some useful links:
Autismspeaks is an excellent source on good plain information and advice for parents of a suspected Spectrum child and also for grandparents and other family members.
How do you cope with having 4 Spectrum children – how do you get help – so many little ways Society can let you down. Sarah Ziegel shares the highs and lows of running her household and her children’s achievements. Nothing beats first-hand experience.