Published on 12, July, 2020
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?
I very much agree with your observation about the lack of support for autistic adults. From my personal experience and from what I have read from others who posted on this forum, I do think it's unfair that the diagnosis and support system is like a regional lottery. I also agree that it's unfair how much they are focusing on children and not n adults - both are important, and both should be treated seriously. In fact, there are more adults in the world than there are children, and children become adults eventually, so continuous support and diagnosis services are necessary. Given that waiting times can be 2-3 years in some regions to get an assessment, it reflects very clearly how many people are in need to support, yet how the current resources are not good enough to meet the demand. If I could design a support resource for high-functioning AS adults, one of the things at the top of the list would be to increase awareness and diagnosis services, so it can give people the opportunity to know about autism and decide if they want a diagnosis. The way I would do it would be to have companies circulate a work email to everyone informing what autism is, and provide a link to a screening questionnaire (that can be send directly to GPs digitally online), and instructions on how to proceed if they decide they want a diagnosis. I think a problem for many people is that they have struggled a lot in life, but they didn't know that their difficulties were due to autism. These advertisements to everyone will provide people with the opportunity and steps to find out quicker than they might have.Another resource that I would like to have would be life skills development summer camps. They have a lot of these summer camps for AS children and teenagers in the U.S., but there aren't many for adults. It would be very useful to be able to attend a 2-week summer camp, where they can teach some basic life skills and provide some team-bonding training. It would be a great way to make friends and learn skills.