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Post diagnosis care

this_is_phil

Hello all,

I was diagnosed in November, and I had a series of follow up group sessions which were talking about what autism is and how it affects us. After that, however, there's not been anything from my GP or anything else, do I'm now just wondering if that's now it. It kind of feels like someone has handed me a spear, shown me how to stab things and then sent me of into the woods to see if I survive. Is that really it? Am I now on my own?

I suppose I just feel a bit lost at the moment. I know I have difficulties with things. I can now name why I have difficulties with things. But I just feel like I have no real way of managing those difficulties. I'm not even sure what I'm hoping to get out of putting this here either if I'm honest.

Parents

  • There is a complete lack of support for autistic adults. It is somewhat a postcode lottery, some areas don't even have the follow up group sessions you were able to access.

    Mental health services don't want to know as autism isn't a mental illness. Social services don't want to know unless the person also has a learning disability. Both will signpost here. There are some charities who can help with specific things such as gaining employment but that is also a postcode lottery.

    As autistic adults we are expected to be able to advocate for ourselves, work out what reasonable adjustments we might need and to be able to communicate those needs effectively to people with no understanding of autism. As you can understand this doesn't work well in practice and the things we have difficulties with can become overwhelming and insurmountable.

    My solution, for what it's worth, was posted here recently. I can't see anything improving very much anytime soon.

    https://community.autism.org.uk/f/miscellaneous-and-chat/30810/if-you-came-into-a-lot-of-money-how-would-you-invest-it-to-help-the-autistic-community

Reply

  • There is a complete lack of support for autistic adults. It is somewhat a postcode lottery, some areas don't even have the follow up group sessions you were able to access.

    Mental health services don't want to know as autism isn't a mental illness. Social services don't want to know unless the person also has a learning disability. Both will signpost here. There are some charities who can help with specific things such as gaining employment but that is also a postcode lottery.

    As autistic adults we are expected to be able to advocate for ourselves, work out what reasonable adjustments we might need and to be able to communicate those needs effectively to people with no understanding of autism. As you can understand this doesn't work well in practice and the things we have difficulties with can become overwhelming and insurmountable.

    My solution, for what it's worth, was posted here recently. I can't see anything improving very much anytime soon.

    https://community.autism.org.uk/f/miscellaneous-and-chat/30810/if-you-came-into-a-lot-of-money-how-would-you-invest-it-to-help-the-autistic-community

Children