"I've sure your "stance" makes you feel like Donna Quixote but all you've managed to do is piss off someone like me who lives with autism IN OUR HOUSE every day. Maybe if austism lived next door and I was able to wave at it and say hello from time to time I would feel differently. Probably not."

If you read my posts, instead of exploding over them, you'd see that autism doesn't just live 'next door' it lives all around me. My daughter is on the circle, as is, I think, my son.

My late father-in-law barely held a conversation with me in the 20 years that I knew him. He was like this with everyone, but Vi, his wife, who now lives with me, despite my divorce, looked after him like a child. She never questioned why he was like this, it was just the way he was, and that was that.

Vi herself is very much as Spaw describes above. She is filled with fears, always has been. Going outside, for her, is a totally fear filled situation. When she did used to go out, (no longer, as she's now 95) she'd literally do it all by routine.

The taxi HAD to be there at midday to pick her up. If he was a few seconds late, she'd start to panic, absolutely panic. She'd go to the same shops, on the same day, at the same time. Even to this day it makes no difference if its Christmas Day or not, if that happens to fall on Washing Day, so be it..the washing still has to be done.
She has lived her entire life this way. Holidays were spent in Holiday Camps, where again, there was a routine, so she'd know exactly what she was doing each day.

Even recently, when she was so sick, with the flu, she HAD to get up and do her routine, because without that routine, she is sunk. Sunk deep in fear. She was terrified of moving into a home for the elderly, literally terrified, as she *knows* that 'they kill of the oldest people first' and nothing you say will convince her otherwise.

Lunch is at 1pm. Tea around 7pm. I have got her to relax a little about tea. However, when she used to cook for herself, in her own house, she would have every meal at exactly the same, precise time.

She never invited friends in to her house, as that is 'not what a house is for' in her mind. Strangers stay outside. Homes are where you are safe.

Holly, another friend of my daughters. The most beautiful child you've ever seen. She is exactly as Spaw has spoken of above, about his son. "What's for tea? When are we having it? What are we doing when we've finished it? What are we doing tomorrow? When? Where? Why?"

The fear dominates, the timetable helps the fear a little, as it leaves far less room for the unpredictable.

My daughter told me only recently that when she was at school she would make 'escape plans' in her head for the worst case scenario happening, be it the bullying, the teachers screaming at the bad children, the bad kids being put next to her due to her quietness.....
When she'd made her plan, she felt safer, just a little safer.

As a child, even if I raised my voice just a fraction, she'd be in tears. Imagine how she felt when stressed out teachers lost it with stressed out children, many of whom should were in the worst place they could ever be in.

Until people understand the overwhelming, all consuming FEAR that lives inside so many people on the autism circle, and then find ways to alleviate that fear, things won't improve. Many autistic children do need a 'cotton wool world' around them, where they know what is going to happen each day and where they feel safe.

By insisting that so many children on the autism circle go to mainstream schools we are damaging them beyond belief, because far from 'giving them a normal life' we are putting them into the worst situation they could possibly be in. Not only that, but it is having a huge effect on those children without autism, who see the anger, the 'bad behaviour' and copy it themselves, thinking "Well, if he/she can get away with it, then so can I!" and so it spirals out of control and ONE teacher is left to deal with it all.

Of course, the 'bad behaviour' is simply the fear coming out, and the fear, understandably, turns to anger pretty damn fast.

Children with autism should not be in mainstream schools. They are there, in this country, because of one woman's crusade for ALL children to have mainstream education. She has now admitted that was a very wrong idea.   They are also there because parents, who perhaps haven't yet come to understand the fears inside their children, want (quite naturally) their children to have a 'normal' education.

Well, a normal education, for many autistic children is a one to one education, in a safe, quiet controlled environment, where they are not having to deal with almost life and death situations all the time, surrounded by thousands of children whose expressions and actions they do not understand, and surrounded by children who so often bully and ridicule them.

I was told, by a stunned teacher, how 'sensitive' my child was. It was said to me almost as if it were a crime. She didn't know what to do with a sensitive child. I guess it's because so often her working environment is about 'de-sensitising' a child.

So yes, Wesley, it lives with me, in my children, in my brother, in my uncle, in my marriage, even though that marriage is now no longer.

I am truly sorry about your son. I know, as in many cases, that there are totally different extremes of autism, from the very mild to the terrible, but I still feel that removing the gene is not the right thing.

For me, the way forward lies in being able to 'tune down' the brain, to stop the over-sensitivity, so that sounds become of normal level, vision, smell too..and thoughts become slower, sleep becomes not filled with nightmares..

Kimmy was terrified of her son when he was 10. Now, he is 16 and far more able to cope with life, as I stated above. Her husband also has Aspergers, and at times he becomes pretty darn cruel to her, but she has learnt to accept and to cope, because she loves the times when he isn't like that, and being a nurse she has researched it all, knows what surrounds her. Her wish too is for Ben to be able to live his life when they are gone. She does her best. It is all she can do.

It is all any of us can do.

For those who are interested, there is a brilliant book out there called 'An Asperger Marriage' which is written by a husband and wife, chapter by chapter. He has Aspergers, she doesn't...and it is the story of how they plough their way through a rocky field. They are still together because each has come to understand the other. When her husband finds talking beyond him, he'll go into his study and send her emails, emails filled with love and affection...and she has come to know that he loves her, even if he only tells her once a year or less. It's a very touching book.

An Asperger Marriage by Gisela and Chris Slater-Walker

Autism - a different perspective


And here is one of the loveliest and wisest people on Youtube. He is autistic and he is DETERMINED to get the world to understand what goes on 'inside autism'. He has made a range of videos and is now writing a book. I'd recommend that everyone watches all his videos, because each one teaches you something new.

In this one, Wolf talks about how parents need to let to go of their guilt, anguish and self blame. It is a wonderful video, for a wonderful, brave and intelligent man who has experienced some terrible things in his life.

I hope it helps some people.
Autistic Werewolf - His Videos