Personal View of the impact of having a child who has Asperger syndrome.
After reading the article regarding the Diagnosis of Autism by Baird,
Cass and Slonims which appeared in the BMJ Vol 327 30th August 2003, I
would like to offer a personal view of the impact of having a child who
has Asperger syndrome. I am pleased that there is increasing publicity
both in the medical and lay press, which is helping to raise the profile
of autistic spectrum disorders(ASD). Our son now aged 13, has Asperger
syndrome and we have encountered huge barriers not only to obtain a
diagnosis but also to secure the educational help he needs. There appears
to us still to be a lot of ignorance and prejudice in both the medical and
teaching professions regarding ASD.
Our son was always a shy child but reached all the developmental
milestones at the appropriate time and since my husband's family are of a
shy nature we assumed that this was connected and not unusual. He had done
well at school but began to underachieve from the age of 9 and suffered
from depression, bullying and anxiety related problems. We were aware of
his increasing lack of social skills and lack of eye contact and empathy.
We obviously consulted both the school and our GP on many occasions at
this stage and during the next three years, but it was difficult for
anyone to accept that a problem existed and they found no reason to
investigate our concerns further. We were increasingly convinced that he
could have Asperger syndrome and eventually we took him to a friend who is
a Community Paediatrician in another borough who confirmed his diagnosis.
This was a relief to our son who had always felt that he was different. We
were obviously upset that our fears were confirmed but also optimistic
that things would start to improve.
We assumed that after his diagnosis he would receive the help he
needed at school. Like a lot of children with Asperger syndrome,
information needs to be chunked into manageable amounts to avoid
overloading the working memory. This is because they have a slower
processing speed and are easily swamped when a lot of verbal and visual
information is presented all in one go. He had developed coping strategies
for use in the classroom environment but these began to fail when the
speed of information delivered and amount of work reached a level with
which he could not cope. He is an intelligent, bright boy but the level of
help provided by the school to date has not been sufficient for him to
fully access the curriculum and we have now applied for a Statenment in
order for this to be achieved. This unfortunately is proving difficult due
to lack of funding, with the LEA stating that the school should be able to
provide for his needs and the school claiming that they do not have the
resources, leaving our son in the middle of a financial argument and no
extra help. This situation has placed a tremendous amount of pressure on
the whole family.
We have felt the biggest benefits of having his diagnosis confirmed
are that we have been in contact with some wonderful support groups and
also met other parents whose children were also diagnosed late because
they too presented in a similar way. We have also seen the child
psychiatrist who has prescribed medication for his anxiety related
problems. The root cause of these is a realisation that he is falling
behind his peers and the daily struggle that he has in class. These are
therefore unlikely to be fully resolved until he receives some form of
extra help at school.
I now know so much more about Asperger syndrome although obviously I
am not an expert. Our case highlights how difficult it can be to pick up
these children particularly if they are intelligent and do not stand out
in the classroom with behavioural problems but have developed coping
strategies which partially mask their difficulties. I feel that all health
and education professionals need to be more aware of this condition
because there are certainly other children who are not being diagnosed. We
have accepted that we will have to deal with the stigma and prejudices for
life, but by writing this I hope to have increased awareness in others.
Our son remains a truly lovely boy who excels in music. His clarinet
teacher has told us that he is the most gifted child that he has taught
for 25 years and we have found it easier to accept his special interests
and behaviour knowing his diagnosis.
Competing interests: No competing interests