Active discussions

Please or to access all these features

Talk
SN children

Here are some suggested organisations that offer expert advice on special needs.

Original poster

Has anyone ever suspected an adult relative of having Aspergers?

41 replies

charleypops · 21/02/2005 19:47

What did you do about it?

My sister and I are having been doing quite a bit of research into this and we are pretty sure my 38 year old brother has it. Obviously he has to be professionally diagnosed, which he has to ask for himself.

I don't know whether I should speak to him about it or not. I suspect he'll ignore me (he is incapable of speaking about his feelings), or it might even add to his anxieties. I don't think he'd even go to seek a diagnosis. I'm not sure anyway what good diagnosis would do.

I would like him to be happier than he is. He lives a very isolated life with no friends, never had a girlfriend and is percieved and taunted as being "weird". He does want a relationship with a woman and is constantly being let down by women he meets through the internet he arranes to meet (he's never actually had a date - I suspect they see him sat grinning and chattering to himself in the pub and leave before he sees them). He has had the same full time job for 20 years and has rigid habits, one of which is going to the pub 5 nights a week (where he sits alone), so he does get out.

Should I just but out and accept him the way he is or could his life be improved by being diagnosed?

Sorry for such a long post - I have spoken to the autistic society but they can't help me with anything like this until he's been diagnosed and can't give me any similar case histories.

OP posts:
morningpaper · 21/02/2005 19:52

My DH and I both think this of a close relative!

However, I think the best thing to do is 'butt out' as you say. The man in question leads a good life - although very solitary - and has spent much of his life in therapy. He is quite 'at one' with who he is.

How do you think intervention would improve things?

morningpaper · 21/02/2005 19:53

Ah sorry, you didn't suggest that diagnosis would improve things.

Original poster
charleypops · 21/02/2005 20:01

What good intervention could do is what I don't know MP, I'm not sure if intervention could help, but thereagain I don't know enough about the therapies available and their success rates. It just breaks my heart when he gets beaten up by teenage girls and blatently taken the piss out of. He was a great musician when he was young, but won't go near a guitar now and gets upset and angry if anyone suggests he takes it up again. I think he spends a lot of time very anxious about things. But he just keeps on doing the same old things in the same old ways regardless, so I suppose in a way he's "at one with himself". Just not particularly happy.

Do you think therapy has helped your relative?

OP posts:
ScummyMummy · 21/02/2005 20:04

How awful. Why is he getting beaten up by teenage girls?

JaysMum · 21/02/2005 21:11

Autism Research Centre have an assessment centre specially for diagnosis in adults.....you could try them for some advice.

Original poster
charleypops · 21/02/2005 21:17

Scummymummy - it's because people think he's weird. And some people are just ignorant b***ds. He's defenceless. Small rough town mentality doesn't help.

Thank you JaysMum - do you think I'll be able to find them on the internet?

OP posts:
JaysMum · 21/02/2005 21:18

Boo Hoo I cant do the links thingy yet....I try but it never works......

You can google it....Autism Research Centre....Cambridge University.

Original poster
charleypops · 21/02/2005 21:41

That's great, thanks. I'll have another trawl tomorrow

OP posts:
Original poster
charleypops · 21/02/2005 22:33

bump

OP posts:
nameychangy · 21/02/2005 22:38

This reply has been deleted

Message withdrawn at poster's request.

Original poster
charleypops · 21/02/2005 23:22

It just goes to show how times have changed doesn't it naameychangy - These things just weren't heard of when we were kids. I imagine there's a lot of adults around that have "slipped through the net"

OP posts:
coppertop · 22/02/2005 09:59

When my ds1 was diagnosed with ASD the Paed also told my dh that he almost certainly had AS. (He brought the subject up himself btw - she didn't just spring it on him). This made a big difference to dh and he was relieved to find out that he wasn't just "weird" (as he used to describe himself). It helped him to understand why he did a lot of the things he did and why he felt that things had to be done in a certain way etc.

Our local support group have set up a social group for people with AS/ASD. Dh finds this amusing as he knows that he himself thinks that a social group would be his idea of a living hell. He is happy to carry on with the same rituals and routines, although he probably wouldn't seem happy to an outsider. Having the same routines helps him to make sense of at least part of the world. He knows what is going to be happening at a particular time on a particular day.

Dh also tends to go through phases of what I would call strong interests ("obsession" doesn't quite fit). He may be very interested in a particular thing for a very long time. Once he's taken his interest as far as he wants to it will then be dropped. He may possibly go back to it at some point in the future but this doesn't always happen. I suspect your brother's lack of interest in his guitar may be following a similar pattern but obviously I don't know for sure.

A diagnosis may not be particularly useful to him. It won't necessarily give him any access to services, benefits etc. In general, help for adults with AS is almost non-existent. He may want a diagnosis for his own peace of mind but then he may be just as happy without one.

You could try googling for sites for adults with AS (probably more relevant than the ones for parents/carers with children with AS) and print off any bits that seem relevant to your brother. Everyone is different but dh related more to the anecdotal stuff than the textbooks listing symptoms etc. If your brother is interested then he could join one of these groups himself.

coppertop · 22/02/2005 10:00

I meant that the Paed told dh that he had AS...

Original poster
charleypops · 22/02/2005 11:36

Thanks for posting this Coppertop. I take it that your dh doesn't attend the AS/ASD group. Would he be able to without a formal diagnosis if he wanted?

The response he had to realising he was able to put a name to his, as you say, "weird"ness is exactly the sort of thing I was hoping to hear when I posted this thread. I'm glad he found it a relief. I'm still far from ready to speak to my brother about it though. It sounds as though he's a bit further removed from society's "normal" than your dh (ie who's married with a family).

I just wish there was a "natural" situation/scenario in which to bring it up with him, (so I didn't have to be direct with him and he might figure it out for himself) like your situation with the paediatrician.

OP posts:
Original poster
charleypops · 22/02/2005 11:37

Would he be able to attend without formal...

OP posts:
coppertop · 22/02/2005 13:29

The group is open to anyone who has/thinks they have AS. It's so difficult for adults to get a diagnosis that most don't bother.

It's a difficult subject to bring up, I agree. It was only when I was reading books about AS/ASD to find out about ds1 that I started to realise that dh also fitted the pattern. Stories he'd told me about when he was younger also seemed to 'click'.

It's obviously not the same for everyone but the people who I know IRL with AS/AS traits tend to end up with partners who also have a lot of traits. I have a lot of traits myself but IMO not as many as dh and not enough to affect day-to-day living a great deal.

coppertop · 22/02/2005 13:30

I mean that most don't bother to get a diagnosis, not that they don't bother to go to the group meetings.....

One of these days I'll remember to preview before posting...

noddyholder · 22/02/2005 13:33

I am sure my brother has this too.He was always like this as a child and grew up to get v involved with drugs.He is now clean but lives a strange solitary existence and is also labelled weird He has had some psychiatric problems lately but I think all this stems from his treatment as a child He lives in Ireland ATM so I am not sure what help is available there.What are the signs of aspergers in adults as I don't want to offend him before I have the facts

Fennel · 22/02/2005 13:47

I am fairly sure my brother and father both have Aspergers. but they have no idea, it seems.

There is a website called something like Friends of Adults with Aspergers Syndrome (FOAAS) which has quite a lot of useful information. It even has a description of the sort of women who marry Aspergers men - which describes my mother rather closely.

It does say that it's very hard to diagnose Aspergers in adults, and they are mostly very reluctant to see this in themselves. In a way, if your brother has a job and is living independently, albeit weirdly, I'm not sure how much his quality of life would be changed by a diagnosis.

Original poster
charleypops · 22/02/2005 15:35

Coppertop - After speaking to people at the Research Centre in Cambridge and the NAS, I can see how it could be difficult to get a diagnosis. Generally the first point of call seems to be with the gp (who may or may not be sympathetic) who then has to refer you. Which costs money, so it's good to know adults can join one of these groups if they so wish, diagnosed or not. I'll have to find out what they can do to help.

Noddy, I'm by no means an expert (yet!), but the National Autism Society was one of the first sites I visited, also the Autism Research Centre both of which have lists of "Aspie" traits. There is actually loads of info on the 'net about how AS can present itself and so far, everywhere I've visited seems to have slightly differing information, or at least articulate it in varying ways.

Even when armed with the facts though Noddy, speaking for myself, it's going to be a tough call I'm sure, in how to, or even if to, speak to our brothers about this.

Fennel - that's another interesting thing you mentioned about the marriages of Aspergers men - i'll have to find that site you mention particularly as it acknowledges the reluctance adults can display to see it in themselves.

I would have to know that his life could be improved in some way before I say anything to him.

OP posts:
noddyholder · 22/02/2005 15:42

I feel my brother may never have resorted to drugs if his probs had been recognised sooner,he has some of the traits listed but there were other things as a child he used to go into sort of absences where he made funny mouth shapes and his hands went funny(sorry not technical but not sure on terminology for this)He would close his eyes like he wasn't there.He has never really had a girlfriend and he is v attractive but always scares them away He repeats himself and sticks to a v rigid routine and won't budge from it.He left his lastand only job as he wasn't home in time for tea and he just wouldn't accept that.He eats at the same time every day with no spontenaiety at all It is a nightmare having him as a guest!Does this sound like AS?

Original poster
charleypops · 22/02/2005 16:13

Noddy - he sounds similar to mine. Mine has had the same job for 20 years though (it's on the railways, and he's obsessed with timetables and trains etc). He used to be attractive, but his "weirdness" has kind of taken over in recent years and now looks very strange. He also has "absences", repeats himself (in a whisper), is stuck to routines and has no spontenaety.

OP posts:
Original poster
charleypops · 22/02/2005 16:15

This is how you spell spontanaety

OP posts:
Fennel · 22/02/2005 16:20

charleypops, the site I was thinking of is at www.faaas.org

it has a load of links but I'm not sure if that is the site with the marriage stuff on it - it was a year ago I read that bit and it may be on another site.

noddyholder · 22/02/2005 16:21

thanks for the spellling lesson!my brother was just on the phone but he had to go and put the potatoes on!