I'm Not Naughty  - I'm Autistic -  Jodi's Journey    Autism, Amalgam and Me - Jodi's Journey Continues   Mercury Poisoning - It's Not In Our Heads Any More - Jodi's Journey Goes On          Supported Living- Jodi’s Journey Moves On Jean Shaw.com Copyright © 2021 All Rights Reserved www.JeanShaw.com

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Autism, One Reason I Wish
Time Would Stand Still

Jean Shaw© - All Rights reserved


On the television the other morning someone described autism as a "living nightmare". I'm not sure I'd personally go that far yet but it certainly is a major concern - at least for the parents.

My son is autistic and is eighteen. Until now he has been very lucky. He has been able to access support via childrens' services, but I realise many people aren't as fortunate. I've heard numerous tales of parents who've had to really fight for what little help they've had and many get none at all.

I do, but that will soon change. Although my son can already legally drive, drink and vote, he is considered a child until he is nineteen and can remain at his special needs school and go to respite once a month until then. However, as soon as he hits that age he becomes an adult.

Whilst his needs will still be the same, the help to which he will be entitled will be reduced - considerably. Suddenly everything, which has become so familiar to him over the years, will stop.

I wish for his sake and mine time would stand still.

We are currently in the "transition" period where we are exploring the options available to him. They are limited to say the least but we are fortunate in as much as he is not physically disabled which must make things far more difficult.

However, nothing we have seen so far even comes close to what we aspire. The local options aren't really suitable and aren't conducive to his continued improvement. It's depressing and I often wish I could go to sleep and wake up to find the whole autism thing was just a bad dream.

Having said that I realise I am actually one of the lucky ones for my son has got options. Other autistic children/adults don't. It's no wonder parents despair and either accept anything offered, or send their children miles away to some form of residential unit simply because there is nothing appropriate closer to home.

The National Autistic Society now suggests 1 in 100 children suffer from some form of autistic spectrum disorder. In 1993 when my son was diagnosed it was 1 in 2500.

The problem is that all these autistic children will grow up to be autistic adults, and the big question is what will they do?

Apparently only 15% of adults with autism manage to hold down employment and 49% never leave home. That means in many cases elderly parents are effectively looking after their age 40 plus children and it's a worry. What happens if they get ill? Who then will look after their children and how will they adapt?

It's a frightening scenario and one that many parents currently face. Since autism is a problem that isn't going away there needs to be more co-ordinated planning and services put in place before it is too late.

Families need help to enable their adults with autism to be more independent otherwise the cost to the community will be immense. If there is no-where for the people with autism to work then their carers can't work either.
I once heard someone exclaim the world would be destroyed by the three A's - anger, avarice and autism. Maybe that's true.

We are already seeing wars and violence created by anger and greed. Now think about all the autistic children you know. They are the adults of the future.

Frightening isn't it?

Now you know one reason I wish time would stand still.