Published on 12, July, 2020
Hello,
I'm looking for some advice here. I've got a friend who I've known for ages. Probably over 15 years or more. He's a bit older then me (47). He comes from a family where both his brother and nephew have both been diagnosed as being autistic or at least are on the AS. His situation is complicated by the fact that he also has severe epilepsy.
He used to hold down a full time job but was made redundant a while back and hasn't worked since. He used to be quite outgoing and you could have a conversation with him but now he seems really withdrawn and often doesn't go out of his house for days on end. He lives in a high rise block in Coventry. He often can't verbalise what his needs are. He recently ran out of tablets to control his epilepsy for 5 days and wasn't able to explain this to anyone. His sister is his main carer. She's under a lot of stress trying to look after him. His Dad died in an accident a few years ago and his mum is not in the best health either.
He is fixated on certain subjects such as astronomy and finds it hard to make eye contact and sometimes doesn't really seem to take in what you are trying to tell him, although this could be partly due to his medication for epilepsy. He's got issues with hygiene too. but he's my mate and I feel that I ought to be doing something to help him but I'm not sure what.
He doesn't have a diagnosis and when his sister has tried to broach the possibility that he might be autistic, my friend doesn't really take it on board. What I'd like to know if getting a diagnosis might actually unlock opportunities for my friend. He doesn't have any social life and seems just to go out of his house to check his bank balance and spend time in Ikea where you can get free coffee in the cafe.
Does anyone else think that a diagnosis might help him? I know it will cost money but if we thought that a diagnosis might help we could look at how to fund this....
Thanks in advance!
Sorry for the delay in replying in more depth.
First of all the social group. The availability of diagnosis / diagnosis pathways / support services varies tremendously from one area to another. The main reason for giving the support group was to give a local point of contact who would have some knowledge of the local area and who you could possibly talk to face to face. The autism connect website gives 30 odd service providers for Coventry and I picked the one I did because I don't know anything about any of the providers and the NAS group seemed the most trustworthy one to start with. As @oktanol said, the social group itself may or may not be of interest - I am not interested myself in a lot of the activities my local group does. Your friend probably would not need a diagnosis to attend the group - because of the difficulties in getting a diagnosis most groups are open to anyone who is autistic with or without a diagnosis. The group may also be of interest to your friend's family.
I am similar to your friend. I am 52 and used to hold down a full time job but haven't worked for years apart from a couple of temporary jobs. I was referred for counseling for depression a couple of years ago but the counselor refused to offer me counseling because she thought I was autistic. I must admit I initially sought a diagnosis as much to prove the counselor wrong as anything else but I was eventually diagnosed with ASD, specifically Asperger's. I was lucky and was able to get a diagnosis on the NHS and it didn't cost me anything. I have issues with hygiene and I go to my local waitrose where you can get free coffee in the café if you have a my waitrose card as long as you buy something else from the café.
The main benefit I have got from the diagnosis is financial. I applied for PIP (Personal Independence Payment) and was lucky enough to be awarded the standard care component without having to have a face to face assessment or having to appeal after initially being turned down. This is worth about £50 per week and is the only income I have. PIP is about how your condition affects you rather than what condition you have but it is probably easier to get if you have supporting diagnosis / documentation from health professionals than without it. There may also be other benefits your friend could claim.
I suppose the other benefit I have got from being diagnosed is that it helps to explain various issues / incidents I have had in the past.
On the downside I am still not 100% convinced the diagnosis is correct.
If you are interested there is a book by Wylie on very late diagnosis of ASD / Asperger's which goes into more detail.