Published on 12, July, 2020
Well i never thought i would be writing on the community pages of NAS...Maybe its one of those last resort things where you think.. its only typing things on a page.. no one really reads it or cares but its sometimes helpful to get it all out.. Hmm not sure...
My son was diagnosed when he was about 10 after years of SEN intervention.. school action then school action plus... got excluded within a week of senior school.. had to home teach him for a year whilst working nights as a nurse whilst waiting for a statement... New school... FABULOUS.. school was great.. they loved him... he did well.. Obviously we had the usual troubles but we dealt with them... Nightmare stages through exams.. did those.. did well.. did A levels.. did well... Went to University AND IT ALL FELL TO PIECES.... since then my son has lived in his room.. doesnt talk.. wont take medication prescribed for depression.. drinks...gets up when we go to bed and goes to bed before we get up.. lives on his computer... does not bath.. wash.. change his clothes or have his hair cut... HES 20 years old... what can i do? GP and others wont talk to me as he is a adult.. Im sure he thinks that if he is not around when we are then hes not a niance or trouble... he cant see that hes ripping me apart.. he barrs his door on his bedroom so i cant get in.. Im really at a loose end..Suggestions on a postcard?
If you have a solution I think you ought to publish it.
My scepticism, other than my explained perspective, is that parents have been offered many "solutions".
Various schemes have been running that supposedly sort out autism issues in primary or secondary school years that promise to change the autistic attitude so that they will have better adult lives - coaching, diet, medications.
The tragedy is that, after all the money spent (and some of these "solutions" are ridiculously costly) there's little sign of the adult revolution. Part of the problem is TRANSITION - what happens come 18 or 21. We've only really started tackling this in the last few years, and it is very clear that the transition to adulthood is, in itself, such a change factor as to unsettle many young people with autism before you add on further/higher education or work.
I'd like to find a solution to higher education. Unfortunately as I explained above, we are stuck with the accursed social model and its "level playing field" concept - all you have to do about disability is stick a few wedges in here and there so the disabled supposedly have an equal chance - eg 15 minutes longer in an exam, having a note taker, being given off white handouts etc.
It is the same in the workplace - the social model rules. You just make a few compensatory nudges and the rest is easy. No it isn't.
I wish I could change this view. I wish I could get adjustments made to the learning outcomes in assessments to resolve the issues young people with autism face. I wish I could raise the profile of this so parents knew more about the hurdles that people with autism encounter in further and higher education and in work.
I cannot because I'm up against the social model - whereby any suggestion it doesn't provide all the answers is now almost heresy.
Added to which I cannot get a platform - I'm a person with aspergers who, for all that I have experience of higher education and disability support in higher education, my judgement is deemed compromised. So I cannot get into a scientific journal just on the basis I did a bit of work with this at a uni and I've also got it! The attitude of professionals to people with autism having any capacity to help understand it stops progress with better understanding autism after transition. I could name names...but the Mods would stop this posting.
I just don't understand people who keep preaching that coaching people with autism will solve most of the problems. Where is the evidence these coaching quacks have really been successful past transition?
And NAS needs to start listening - reading what we discuss here.