If we could design it ourselves, what would AS services look like?

I got a formal diagnosis this year - 25 years after taking the AQ test (39) and nearly 60 years after I was first referred for assessment as a child - it's been a bumpy ride! I've had some amazing help from my local authority AS services around employment but I've been a bit surprised at how little AS people are actually involved in the service and it also seems that there's very little ongoing support for AS adults. It also seems a bit of a lottery regionally.

Meanwhile, we have researchers cruising the forums looking for input on the latest app or conference. Again, none of them seem particularly keen to do more than get input on their own ideas - we don't get 'invited to the table'. All the apps I've seen look as though they're for children. The diagnostic process is designed for children. Services seem to be very vague on high-functioning adults?

This NAS forum has been a life-saver in floundering around post-diagnosis and it feels ungrateful to moan - but it's very far from perfect for HF AS adults and, again, there seems to be very little involvement on the part of AS people in defining the service.This might be partly as it started off as a service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.

So maybe we need to be a bit proactive?

What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?

Parents
  • I for one dont think the 'budget' for Autism services is properly thought out.

    We do have to live in the real world, I know that.  But I don't know how much autism services actually cost.  I have my suspicions that considering the numbers involved, the actual budget to provide a proper service would be quite low.

    We have to wait ages for an assessment and diagnosis.  Yes, these services are quite expensive, but the cost of a diagnosis privately in the upper range is somewhere around fifteen hundred pounds.  Assuming the oft-quoted figure of 350,000 people undiagnosed this would mean somewhere around five hundred million pounds to diagnose everyone.  A lot of money, but in the scheme of things not that great for the problems it would solve for those affected.  And that would be a one off cost, once everyone was diagnosed who needed to be the cost would be very low considering only just over one per cent are affected.  There would be very low waiting list, perhaps three months.  This would impact by ensuring that the problems of an autistic person are understood by government agencies rather than being thought of as 'awkward' especially those who suffer because of their lack of diagnosis.

    And with diagnosis should come help.  Access to support, both at work and not.  Everyone who needs some support should be able to get it.  Support should be tailored, and after an initial consultation with support services a 'support plan' should be put in place, including employment services, housing, mental health, etc.  Support would be according to needs, but in meaningful consutation.  In the minimum it might be a 'named' person who was able to give advice and information, and be able to be seen by appointment (with a short wait) but would also be available by email/letter/telephone.  Further up the line, the support might be sessions of an hour every so often, perhaps every three months or six months.  And then there could be regular support for those that needed it.

    There are already charities in place, so these could be expanded.  They suffer from being underfunded.  Once again, we are not talking a huge amount considering the benefit to the person involved.   And we mustn't forget by no means everyone would feel they need to access the service, but it should be available for all who do think they need such services.  And I am well aware of the problems that are faced by those with any disability.  However we have to fight our own corner regarding autism and let those with their own problems regarding other disabilities fight theirs, and not fight amongst ourselves.

    Combined with this should be a compulsion for all employment services, government services, and employers to undergo diversity training to include a large slice of autism understanding and acceptance training.  Because until there is more understanding and less brushing under the carpet of problems autistic people face, nothing will change.

Reply
  • I for one dont think the 'budget' for Autism services is properly thought out.

    We do have to live in the real world, I know that.  But I don't know how much autism services actually cost.  I have my suspicions that considering the numbers involved, the actual budget to provide a proper service would be quite low.

    We have to wait ages for an assessment and diagnosis.  Yes, these services are quite expensive, but the cost of a diagnosis privately in the upper range is somewhere around fifteen hundred pounds.  Assuming the oft-quoted figure of 350,000 people undiagnosed this would mean somewhere around five hundred million pounds to diagnose everyone.  A lot of money, but in the scheme of things not that great for the problems it would solve for those affected.  And that would be a one off cost, once everyone was diagnosed who needed to be the cost would be very low considering only just over one per cent are affected.  There would be very low waiting list, perhaps three months.  This would impact by ensuring that the problems of an autistic person are understood by government agencies rather than being thought of as 'awkward' especially those who suffer because of their lack of diagnosis.

    And with diagnosis should come help.  Access to support, both at work and not.  Everyone who needs some support should be able to get it.  Support should be tailored, and after an initial consultation with support services a 'support plan' should be put in place, including employment services, housing, mental health, etc.  Support would be according to needs, but in meaningful consutation.  In the minimum it might be a 'named' person who was able to give advice and information, and be able to be seen by appointment (with a short wait) but would also be available by email/letter/telephone.  Further up the line, the support might be sessions of an hour every so often, perhaps every three months or six months.  And then there could be regular support for those that needed it.

    There are already charities in place, so these could be expanded.  They suffer from being underfunded.  Once again, we are not talking a huge amount considering the benefit to the person involved.   And we mustn't forget by no means everyone would feel they need to access the service, but it should be available for all who do think they need such services.  And I am well aware of the problems that are faced by those with any disability.  However we have to fight our own corner regarding autism and let those with their own problems regarding other disabilities fight theirs, and not fight amongst ourselves.

    Combined with this should be a compulsion for all employment services, government services, and employers to undergo diversity training to include a large slice of autism understanding and acceptance training.  Because until there is more understanding and less brushing under the carpet of problems autistic people face, nothing will change.

Children
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