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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!

Parents

  • 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.

      

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  • 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.

      

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