|My son is autistic and NO, that doesn't mean he is
exceptionally talented at maths, music or art. Those remarkable people
are autistic savants - same problem just different.
That's the problem with autism - everyone is different!
When Jodi was diagnosed I didn't know of anyone with autism and most
people I spoke to had either never heard of it, or had seen Dustin
Hoffman in Rain Man. Their knowledge was therefore as limited as mine.
I didn't understand it and still don't. Autism is a complex mystery
which no-one seems to be able to solve. It's a jigsaw puzzle where the
pieces don't quite fit.
The only thing I know for certain is that it's not the best label to
have. I knew that right from the day the specialist said "I'm sorry
to have to tell you but your son has autism."
Back in 1993 when I received the bombshell the statistics for autism
in children was 4 or 5 out of every 10,000 and it affected mostly boys.
It was considered quite rare.
The statistics in 2006 for people on the autistic spectrum was 1 out
of every 166 but I recently spoke to a representative of the National
Autistic Society (UK) who told me the figure was more like 110.
That's quite an increase and it is widely accepted that we have an
autistic epidemic on our hands or rather a pandemic.
You see the rise is not restricted to one area but affects many
different countries. The rate varies from area to area and I have read
reports of one particular region having a rate of 1 in less than 100.
Frightening isn't it?
What's particularly worrying is that each of these children needs
support and as autism is a life long thing and not just a two week
illness they will require some sort of help for life. Who's going to
When he was diagnosed, the "experts" warned me by the time
my son was fifteen he'd most likely be in a home as I wouldn't be able
to cope with him. Thankfully I didn't listen.
However, sacrifices have been made and life has certainly not been
"normal", if there is such a thing.
The long term financial cost to all the services involved if a child
develops autism is immense. In June 2000 a study for the UK Mental
Health Foundation estimated that the lifetime costs for a severely
autistic individual would amount to almost three million pounds.
That sounds incredible but people with autism generally live to a
normal age so all the extra health, care, special education and
transport costs all add up. Then you have to consider the lost earnings
and tax revenue from the autistic person and the relative who will most
likely be looking after him or her.
Every autistic individual is different but they will all have the
same underlying problems. It is known as the Triad of Impairments which
means that autists have difficulty with
* Imaginative Play
* Social Skills.
People on the Autistic Spectrum have varying degrees of difficulty.
Some people like to think of it as a line with the severely autistic at
one end, Aspergers in the middle and the so called 'anorak' at the
other. The big difference between the two ends is that the anoraks and
Aspergers people desperately want to be accepted and the autists are
just happy in their own world.
The whole line is thwarted by their inability to grasp social skills
but the autists don't care. Personally I think they are the lucky ones.
People can be very cruel and unkind - usually through ignorance and fear
but that's no excuse.
When children develop they normally go through various stages in a
set order. Each stage is a building block to make a solid individual and
it is usual to start with the foundations. If any of these building
blocks are missing then the structure can be pretty shaky. Much of
Jodi's foundation is missing.
Play is a very important building block. It encourages both physical
and eye contact, interaction, language and all sorts of social skills.
It is something you expect every child to do naturally. Most autistic
children have to be taught how to play. Some like Jodi never will.
One of the most significant problems with autistic individuals is
that they don't make eye contact. Much of how we learn is by watching
and imitating others.
Their lives are black and white - there are no gray areas and things
are taken literally. You ask an autistic person to "Take a
seat" and the response might be "Where to?" They wouldn't
be joking either. Innuendo and implied meanings have no role in the life
of an autist.
An autist doesn't lie. They don't understand the need -"Does my
bum look big in this?" - "Yes!"
They also lack empathy. If I cry my son will offer me a tissue.
Occasionally he'll say "Don't cry" but there's no cuddle -
just the tissue and the word "wet".
A look, a gesture, body language, the inflexion in the voice, all
serve as clues to how another person is feeling. Autists have great
difficulty picking up on these things. It makes life very difficult and
leaves them vulnerable whilst at the same time making them appear
selfish and insensitive.
Jodi looks perfect. He's a fine looking young man on the outside but
he's autistic. Often people talk to him and he'll just blank them. He's
not being rude, he just doesn't even realise people are addressing him.
Recently I took him to Prague with his integrated dance class. It's a
weekly session he has been attending for a few months but until the trip
no-one realized he could communicate. Admittedly, it's not always verbal
but the badge he has is right. It reads "Just because I don't speak
doesn't mean I have nothing to say".
Yes, my son is different. He's a complex individual who has taught me
patience, tolerance, compassion and understanding.
I consider myself very lucky to have him.
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