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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  hopefully someone will delete this one as duplicated for some technical reason thanks

  • I replied to the duplicate thread, before the above replies started on the this one, and the duplicate can now be deleted by the Mods. The essence of what I said is that the funding is driven by parents' groups, so the emphasis has always tended to be on children.

    Adult provision ideally should be funded by adults, but few of us are in a position to contribute. Alternatively we could seek national and local government funding but we would then be in competition with parents' groups.

    We are benefitting from funding from NAS, but NAS originated as a parents' group national body. The priority from that perspective, is helping children.

    It may take a long time for attitudes to change. There is still an illusion that you grow out of autism; that if the right measures are put in place in childhood, as adults these children will no longer be affected by autism.

    There is even a strongly held view that I have come across that adults claiming still to have difficulties didn't make better use of the help provided when they were children, as if somehow that is their fault. Similar views regard those diagnosed in adulthood as frauds.

    I don't know how to speed things up.NAS has campaigned for various legislation and provisions by national government, but they are very slow to materialise. GPs were supposed to improve referral for diagnosis in an initiative a year ago. The Government is supposedly trying to help us find work. There was an initiative three years  ago to ensure commissioning in local authorities covered autism independently from learning disability and mental health, but that didn't happen. That should have benefitted adults.

  • I feel the frustration, when these children grow up as mature adults they will be having to deal with the same challenges we face. It almost seems like the expectation is that when these children mature in to adulthood the affect of asd will be insignifgant if they are given all this support at an early age. My remaining years are shorter than these children, so will lose any argument there, it does not mean that I am any less of a human being than they are.

  • Agreed.  As an adult woman with recently diagnosed Aspergers I am angry and frustrated by the lack of information and support available to us.  The ignorance I have experienced, even from Autism "experts" has been astounding.  I quit my last (extremely specialist, not IT lol) job, mainly because I couldn't get the right reasonable adjustments.  This was partly my fault, I didn't know what would help, but my kind boss even looked on this site for guidance and struggled to understand my situation.  Other people started treating me like I was suddenly stupid and infantalised  me (2 degrees, masters) after doing a it of research.  

    I appreciate  that parents are trying to do the best for their kids but they also will grow up.  I am aware that there are lots of adults being diagnosed in adulthood - it would be extremely helpful to raise awareness of this.  I am pretty sick of seeing everything being directed at parents, oh, and their kids.  Social skills training for adults using photos of adults would be a good start.  I don't have kids and dont interact with them so this doesn't help me.  I agree that I am fed up with hearing things from a third party perspective of parents or "professionals".  There is an abundance of intelligent aspies with a wealth of experience to offer.  I don't want to hear an outsiders interpretation of what they think it would be like to be on the spectrum. 

    The only service I was directed to by the Nhs in my area was a social club that was boasting of its recent purchase of a Nintendo wii.  I'm pretty sure, I'm not in their target demographic.  whatever their good intentions, this would also not help me to interpret depression and anxiety caused by the difficulties in everyday living I experience.  

    well said asparagus and lumos.

  • I totally agree with this, it's like all our problems stop after 18, or even after about 12. What I find annoying aswell if the amount of resources for partners/parents/siblings/teachers/practitioners. Surely the people WITH autism need the most support. If I see one more story about how hard it is to know someone with autism....

    Second rant over ;)