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looking back

crystal12

hi - my son's an adult now in his 20s.  I've been thinking back from when he 1st was diagnosed + all the things that happened along the way to where we are today.  I've often thought, despite all my reading on the subject, that I wish I'd known then what I know now.  There's obviously the need to understand autism + how it affects your child so you can do your best for them in every way.  Then there's "the system" : education, social services, dwp!!  There's an awful lot (sometimes with the emphasis on "awful" with regard to the system) to get your head around.  Struggles along the way, successes + failures.  Most of the time with the system it comes down to money.  They're short of it so assessments are done bearing that in mind - well that's my opinion.  So you get what they can afford, not always what you need.  Then the battles start.  Also depending on the area you live in.  Some areas have invested more than others, so there may be an appropriate school in your area or not.  Supported living homes which are staffed by autism-specific staff once your child is of adult age - maybe, maybe not.  As I said at the beginning, just wish I'd known then what I know now!

  • hi - I wrote the original post because I know I made mistakes at times, altho not at the time. There's so much to learn + that takes time.  I was too ready to accept what some professionals offered me, thru ignorance of what we really needed....that sort of thing.  Then things go wrong.  Then you've got to fight to get what you need.  Learning along the way.  There is much more available now than there was when my son was little, but money seems to be even tighter now.  So, no we can't got back + change things, no crying over spilt milk, as they say. We learn from our mistakes, but it can be a hard learning process.  Just felt like a bit of a moan at the time I think, because we shouldn't have to go thru what we sometimes have to go thru + it's our children + us that suffer whilst it's all going on.  

  • My son was diagnosed at 11 and has now just turned 18. In my ignorance I just thought he was a little odd until a brave teacher flagged up the possibility of autism after a rather violent temper tantrum at school which we then looked into further.

    The diagnosis explained so much about my son's behaviour but 'looking back' on his school reports and school work the signs, even the way he played and spoke to other people were all there. I find it hard to believe that at least some of his previous teachers did not voice any concerns. My daughter, who is a teacher of early years age group told me that they are not allowed, as they are 'not qualified' to do so. It seems strange to me that teachers who see all sorts of behaviours in their daily work cannot voice a concern.

    At 11 my family was armed with this diagnosis but were then left with no further information regarding future help and so on. I didn't even know about this website. So, again, in my ignorance we just carried on with family life and a somewhat difficult battle with school authorities to get some understanding and help. At 18 he is still holding on tightly to education by the fingernails at a sixth form college, struggling with a 'won't write, can't write' mindset, even though he is very bright at science and maths and is an amenable and friendly guy.

    You don't know what you don't know, so more information may have been able to help him and us in his difficult school years. I now wonder what I would think in the future, say, when he is 30 what we could have done to help him find a satisfying niche in society. At the moment I fear that if he is lucky enough to get a job, it may be on a low paid factory assembly line and will bore him. So I am at this crossroads, not knowing whether to keep fighting for him (very stressful for everyone) or let him do his best under his own steam and watch what happens.

      

  • I agree, I wish I could go back to when my son was 7, and know about the diagnosis he got when he was 17. His life would be different and I know we caould have saved him much sadness and rejection.

    The good thing is that those of us that have been through it can help those in the early stages - which is exactly what this forum does.

  • Sealed

    but you know now, and you do what you can, you cant do much else, no point wishing , you cant change that, just look to what you can do NOW

    i can say i understand your point about the system,they dont make it easy and there is not enough help for this, and many other issues