The Lost Generation
There is a lost generation of people with Asperger's who are in their
thirties: they were born and indeed grew up before the condition was
recognised, and missed the boat for an early diagnosis, or maybe for any
form of diagnosis, they fell into the arms of the mental health services or
perhaps their families were just left holding the baby and it may be too
late for them to achieve what they were capable of.
However, the found generation who are getting diagnosed at average age of
11, but often younger nowadays, are still at risk if the individuals in the
health, social and education services don't know what to do. It is still
the case that GPs don't recognise Asperger's. Nurses apparently
don?t how to listen to them, psychologists have not met any before, and
teachers don't know how to amend their classroom practice.
A friend and colleague of mine, Robyn Steward, who herself has Asperger's
was talking to me about nurses. She will only go to one specific person
because she understands. How do you know she
understands?? I asked. She tells me what she is going to do before she does
it, and she shows me the swab or whatever she's going to use before she uses
it. Not rocket science, and what shocks me is that the other two nurses and
GP she could use don't do this.
All you have to do is to ask Robyn what she needs in order to avoid a major
panic fit in which she will be screaming and so frightened that she becomes
out of control. Of course, you also have to be
willing to let your patient tell you what to do.
I recently visited a young man in his secondary school. He was not coping
and had the senior man on red alert to confront the next crisis. I followed
him around and noticed that he not working in
any lesson, but chatting, drifting, messing around and invariably getting
away with it. I suggested that each teacher noticed him by name and directed
him to sit close to the front and always looked
at his work as the lesson ended, but they could not make the necessary
changes: their ethos prevented them telling students where to sit, and the
rest was too much to contemplate. He fell out of school and his mum began
the fight to get him into a special school. Very expensive, very divisive,
and perhaps not necessary.
But not rocket science.
There are a lot of people who need some help, but it is not one size fits
all help that is needed, but highly specific individualised support that can
be trusted. Mainstream services do not have a complete understanding of this
condition by any means yet, and some of our early assumptions may not be
good enough.
It is clear to me that current knowledge and services are not educated
enough about what is needed, even down to the basic customer care level of
finding out what the person needs in order to feel safe and then delivering.
When I work with a family or individual with Asperger's, I do a lot of
listening and use my energy to support them in achieving something that
makes sense to them. Eventually the ordinary problems come up and I try to
help them to face these and find solutions, and slowly, in some cases, they
come round to a more positive way of thinking in which they are willing to
talk to the nurse yet again, change their GP, challenge the psychiatrist who
wants to prescribe some psychoactive medication or seek another meeting at
the school to discuss a difficult teacher. It does seem
to be an inhospitable world for someone with Asperger's.
It seems to me that it is a bad card to be dealt in the first place and us
neuro typicals ought to expend a little more energy on finding a way to
accommodate our socially disordered brothers and sisters.
Yours,
Bill Goodyear
http://www.bbicoaching.com/billgoodyear/
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