RA and Autism/Aspergers: Just wondering on here if... - NRAS

NRAS
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RA and Autism/Aspergers

Just wondering on here if anyone is Autistic / ASD / Aspergers as well as diagnosed with RA. How did you manage communicating your pain when you were younger? Do you have any advice from experience to give to a parent of an autistic child with RA.

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Hi - my son has Aspergers and I have RA and that seems complex enough sometimes - although he is a young adult now at uni. As I spotted this question here he was just on the phone asking my husband how he can put up a darts board his girlfriend has bought him for his birthday - in his smart rented flat where there is nowhere suitable for it at all. Although he's very bright and high functioning he just can't accept that this is not going to work and got very cross with his dad for saying not an option so we still get in some raffles with him!

It depends on your child's presentation of Aspergers and on how severe the RA partly I think. Does he or she have a very high pain threshold or a very low one and do they have phobias about doctors or needles as my son did? Do you have an autistic spectrum teacher? If so then that would probably be the most helpful person to enlist support from. I always found social stories a very helpful way to get ideas across to our son when he was younger. I think with most things about RA the pain makes dictates many of the rules and the main thing about medicines and blood tests etc (assuming they are a problem) is to find a way of conveying the damage that will occur to joints if they don't accept the necessity for these - again something that the literal/ autistic mind can probably take on board if it is explained in very clear and practical terms - perhaps using a social story?

A better place to ask might be the parent of children with arthritis forum on the Arthritis Care site because there will be a greater number and variety of members so you might find someone else in your situation as a parent there?

Sorry not to be able to be more helpful but you have my huge sympathy - I found having an autistic child hard enough to accept without having RA thrown into the equation as well. TTx

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