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frustrated

asparagus

Hello

Just seen the events page and the advert for National Autism week in Schools.

I am an adult with Autism and there virtually no information out there for us. I guess it is assumed either it don't exist in adults or that we have learned our ways of coping by time we are adults.

But more adults are being diagnosed on the ASD Spectrum. But nothing out there for us to tap into. We stumble through

How about a National Autism/ASD week or Day for Adults on the ASD Spectrum - especially for those who only been diagnosed in their adulthood.

Please since this is a people community board I hope someone from National Autism Society is seeing this and start to change things regarding help for adults diagnosed with Autism. Lots of books and DVD's for families and the younger end but what is there for the older end. Just one little article in the journal about those reaching pension age and the changes they may have to make. 

Tired of everything about children - not that am tired of children don't misunderstand me, but there is nothing much to help us.

Rant over but hopefullly someone is reading who can help

  • This has a lot to do with who funds autism support. The whole movement, including NAS is led by parents' groups. There is no real adult funding - ideally we should be raising it ourselves, but how many of us can do that - certainly not in significant numbers? Nor are we in a position to connect and act collectively.

    Ironically a lot of adults were diagnosed as children and have grown up into adults, despite the myths about all that counselling and indoctrination, still not cured. The only trouble is their parents may be elderly by then, less well off, and needing care themselves.

    A bizarre facet of this is that some parents groups only have parent memberships, there is no capacity for adults on the spectrum to be members. Because there is nothing for their adult autistic sons and daughters, parents who were involved in the parents' group through childhood, drift away.

    I do wonder if some of the difficulties we encounter in here are because the funds primarily belong to parents' lobbies, who after all raised most of it, and adult issues are seen as detracting from the primary purpose. Also you do meet parents who think we should have grown out of it, and our continuing difficulties are our fault for not trying - there is so much mythology out there that if you follow this or that regime your son or daughter will be magically cured by 21.

    Also parents' groups are often fiercely defensive. I have been involved with several parents groups, sometimes by paying as a professional member. I was once invited onto the committee for one, but I became seriously ill having to go into hospital a lot over the following year. After that I experienced extraordinary hostility because they perceived I had let them down - not the least concern expressed about my illness. Parents' groups create a sort of mindset focussed on resolving the autism of their offspring, to such an extent they don't see outside this.

    So the reality is, to have facilities for adults, we need access to funds. We are getting help from NAS.  But to be able to contribute significantly to funds ourselves, we need to have secure jobs that provide the income levels to do that. For many adults that just isn't happening. Alternatively we need to lobby for Government and Local Authority funds, for which we would then be in competition with the parents' groups.

    I think it will take until people realise the scale of adults affected by autism. There is a long way to go yet.

    (gee my first posting outside the "An Idea" thread these two weeks).