What can happen if Asperger’s Syndrome isn’t diagnosed in childhood
A sister’s memory of a confused sibling
My brother Daniel was always a quiet, reflective child. Even though
he’d join in the various games my sister and I always dragged him into,
he preferred to play by himself; pushing his Tonka lorries and Dinky
cars around the garden, pedalling his tractor up and down the driveway
or sitting in the vegetable garden and digging in the dirt. As the
vegetable garden, more often than not, had legitimate things growing in
it at the time, this latter occupation was not always appreciated!
Daniel grew up into a quiet young man. He had friends, but they
were few and of a similar type to him. He liked secluded occupations –
computers, when they became a common addition to the home, fascinated
him – he became even more solitary, and liked collecting (to us) weird
things to do with his favourite sci-fi TV shows. So, what’s wrong with
that? He sounds like any one of a number of young men up and down the
country often termed rather cruelly as ‘geeks’, or alternatively
thought of as ‘shy’ or ‘solitary’. The point is that my brother wasn’t
just ‘shy’, he wasn’t necessarily a ‘geek’, despite his hobbies: my
brother had undiagnosed Asperger’s Syndrome.
When we were growing up, in the sixties, ‘special needs’ wasn’t a term we knew ...
I know this now because, at the very late age of 40, his doctor
finally came to the conclusion that Daniel presented all the signs of
Asperger’s. He had a relatively mild form of obsessive compulsive
disorder (OCD), he didn’t like loud colours or noises, hated crowds,
but he was intelligent and learnt things easily enough, as long as they
were taught in a way that he preferred. He was also in a job that he
was clearly too highly qualified for, yet he had been passed up for
promotion several times. Not because he was considered incapable of
being a supervisor or manager, but because of his lack of social skills.
When he told me of his diagnosis, it all suddenly became much
clearer and signs and events from our childhood made much more sense to
me. His clumsiness, his repetitive nature and his ability to become so
completely absorbed in something that he ignored everyone and
everything else around him, all suddenly became blindingly obvious
signs of Asperger’s Syndrome once you read the literature easily
available. (The time when he missed the school dinner bell one
memorable lunchtime springs to mind, because he was absorbed in a
solitary game of marbles; luckily the dinner ladies were able to scrape
together a meal for him.)
Subtlety is not one of his strong
points, he can also be quite clumsy and he hates, absolutely loathes,
change of any type. Again, nothing out of the ordinary there: I could
be describing anyone, and you probably know someone just like him.
Growing up, his clumsiness was put down to his ‘lazy’ eye; he spent
his early years sporting a snazzy pair of National Health glasses with
one eye covered by a large pink plaster, apparently in an effort to
make his lazy eye less so. When we were growing up, in the sixties,
‘special needs’ wasn’t a term we knew and we should have known more
than most, as our mother was a nurse. The hospital where she worked
used to be home to psychiatric patients, specifically children. Now
it’s a NHS maternity and gynaecology unit and most of the land acreage
(woods and a muddy inlet down to a river) has been sold off for
housing. I suppose, growing up, we all saw children with such severe
difficulties that Daniel’s ‘shyness’ was never considered to be
anything else but just that – shyness. Why would it? This was years
before the 1996 Education Act: hence his very late diagnosis in
adulthood.
Today, any child who has any special need can access the treatment and help that they require to make their life better.
There is a school of thought that Asperger’s might run in families.
Well, in our family there’s no real evidence of it in earlier
generations (as far as I can tell), but Asperger’s Syndrome was not
identified until the 1940s. There are a string of unmarried men in our
family history, and my brother is the last of a male line which three
generations back featured a family of twelve children (eight of them
male), so there may well be something in the genes. Daniel doesn’t have
any children but our sister has a son and all of us are keeping a
careful eye on him. To date, he appears to be a happy, healthy,
boisterous boy. He is exceptionally loud, gregarious, uninterested in
solitary things, and likes nothing more than chattering away to all and
sundry. I think our problems with him are of a different sort and just
beginning!
Today, any child who has any special need can access
the treatment and help that they require to make their life better.
Today we are, I hope, much more in tune with recognising that something
is, not necessarily wrong, but different. I also hope that we as a
society are much more able to cope with helping to solve the problems.
Therefore, I pray that there will be no more Daniels, living in
confusion, anxiety and their own little worlds for most of their lives;
I hope that they will be noticed at an age where they can be helped and
guided, so that they are much more able to live a full, happy and
unconfused life in this beautiful, wonderful world we are all so very,
very lucky to live in.
Daniel agreed to this article on the condition that his name was changed to protect his privacy.
For further information about Asperger’s Syndrome contact:
The National Autistic Society
393 City Road
London EC1V 1NG
Tel: 020 7833 2299
Email: nas@nas.org.uk
Website: www.autism.org.uk