I've name-changed for this but have been posting on this thread. I'm happy to tell my username to anyone who asks by pm.
I have changed some details because I don't want to out myself or make my family easily recognisable but this is, I think, a "good news" story.
Nearly 40 years ago S was born to a close family member. We are a family of teachers and health workers and we all felt, from 1 month on, that not all was well with S. Pretty soon Health Visitors and other professionals picked up that there was considerable developmental delay. Those of us working or training in education felt there was more to it than that. Much research in dry academic books followed. I'm ashamed to say I've forgotten the name of the book that was our turning point but S conformed to every autistic "label" available then.
Our LEA, at that time, did not acknowledge autism as a condition. S went to a specialist nursery and then infant school and struggled constantly. There were many, many meltdowns, despite all the staff doing all they could think of. She did learn to read a little, thanks to some patient teachers. Autism was new to them as well. S became more and more rigid in her thinking and increasingly inflexible. The home situation was a nightmare for all of them. Their lives revolved around S's obsessions, needs and wants. Family outings were sometimes over before they began because S's sister leaned too far into her seat. The family was close to breaking point.
All of us who knew anyone, anywhere of any influence pulled as many strings as we could and bombarded every agency with demands for help for S and the family. Eventually S was found a place out of county as a weekly boarder in a specialist school. The LEA were persuaded to fund it.
The first months were very difficult for everyone. The wonderful staff slowly eased S's rigidity, tackling one thing at a time and gave us all advice about how to help S at home.
S continued as a weekly boarder until she was 16 and then she was given a place on a life skills course with our LEA. By then she had become much less afraid and rigid and was open to learning new skills. There were still meltdowns but S had come to understand what they are and didn't dwell too much afterwards.
It hasn't been all smooth sailing and there have been hiccups along the way but now S is living in a bedsit in sheltered housing with 5 other people and a resident social worker and looking after herself as much as she is able. She has an active social life and enjoys family outings and visits to the cinema. Meltdowns in public are exceptionally rare. This is because she says, "I don't like to make a show of myself." She has been taught strategies to help avoid them and we know what they are as well, so can help.
She works (in a supported" job) two hours a day, five days a week in a charity shop.
She is an example of the difference that specialised education can make. She could not cope (and would never have been able to cope) in mainstream but the right school made all the difference.
I'm disappointed that 30 years on parents still have to fight for the best possible option for their children. I had hoped things had changed for the better.