Adult autism- how to get diagnosis?

Hi Happispirit,

Lots of relevant stuff raised by other posters. Longman is quite right to question whether a diagnosis is necessary. For some people who have no pressing need then it can satisfy curiosity but for others it is more necessary. I got diagnosed at 58 as I was going through a "bit of a crisis" with work and life and everything. I needed it to stop my employer pursuing a certain line of action and I also suspected that Aspergers was the root of a bunch of problems. In your husbands case, he is on medication for depression and things sound as though they are getting too chaotic for everyone. In his situation I think I might well pursue a diagnosis before it becomes more of a crisis.

Electra identifies the lack of support as an autistic adult. This is a bit of a lottery and it depends more or less on how chaotic someones life has become before you are given specialist second line support. Many autistic people will manage with primary care i.e. GP, some CBT therapy if necessary. It requires a sympathetic and experienced GP for this to work and you need to persuade the GP that he should something more than dole out some anti depressants. There are specialist adult autism support units in some areas (e.g. Bristol) but most areas sweep it into adult mental health care which just doesn't get the funding that it needs to provide a sensible level of support. SOme adults can manage well without support and intervention.

Many people on the forum have found that drugs don't really help. Some people here have found CBT useful. Some people haven't found anything that works for them. If the drugs don't work for him then you can use this as an argument in support of diagnosis as he needs something and the drugs aren't helping.

He is entitled to a second opinion - this has to be demanded/requested and this request needs to be done with enough formality to make the GP react.

The Catch-22 of autism is that we have difficulty communicating ourr problems during consulations with doctors. How do you communicate the problem if you have difficulty communicating? There are two approaches to this. Firstly, write down a brief explanation of what the problem is and hand that to the GP and then talk it through with them. When trying to get a diagnosis I think this needs to have two sections: a) what signs make you think it is autism and b) what real problems do you think this causes. Secondly, there are advocacy services where you get someone else to go along and make the case with the individual. There are formal advocacy services available (search on the site for more details) or you can get a friend or relative to go along and assist him. 

I would recommend two books that have helped me. "Living Well On The Spectrum" by Valerie Gaus is a self help type book that I used to begin with. It confirmed my suspicions, pre-diagnosis, and it promotes a positive attitude that can really help. The second is Tony Attwoods COmplete guide to Aspergers. This is a much longer read and is a long term resource that is invaluable for people trying to understand the syndrome.

@Parkin82: I don't know if some of this helps you? There are other threads about the problem of telling someone your suspicions. 

Hi,

I am new to this site and am looking for support too! I think that my sister has aspergers, but really dont know how to tell her & to get her the support she needs!!! For over 10 years she has been treated for mental health issues and OCD, but I feel (as do my parents) that themedication & therapy is not working and that there are some signs of ASD, including obsseive behaviour, violent outbursts, rituals and inability to cope with change. I love my sister dearly (she is in her 40's) but dont know where to start??? xx

I would add that almost no one who is diagnosed as autistic as an adult gets any support or help from statutary bodies.

Most of us seek diagnosis just to get some self knowledge and insight. If we thought we were getting any help then the system quickly disabuses us of that fanciful notion.

Getting a diagnosis as an adult brings its own problems. For some its a relief but others are left angry and resentful and must deal alone with these difficult and painful feelings.

Diagnoses for adults is still a postcode lottery and depressingly bad in some places. Yes there are difficulties diagnosing in later life, especially if parents are not around to give insights on childhood difficulties, or if there are complications as you describe. But it does sound like someone making feeble excuses.

It would be worth going around again and asking for him to be seen by a different specialist - preferably the authorised autism diagnosis facility in your county or administrative area, rather than just someone in mental health not taking their job seriously enough.

However I just wonder why you want him to go through with this. If it is to help him resolve past and present difficulties with an explanation and resolution/closure then that is good, and worth going for diagnosis.

If he doesn't feel he needs that, but simply wants to gain insight into how it might affect him, he can read books on the subject, which will help him understand both his own issues and those of his children, or go on a course (there are some provided by NAS and seminars he could attend).

That option doesn't give him the resolved explanation a diagnosis would provide, and he might therefore remain uncertain whether it applies to him (though you can continue having those doubts even after a diagnosis). Nor does it give him any options for support. But if just insight and self-understanding would be beneficial it might be the option.

Thanks for reply,

I do not understand the system, it was a hard 20 month journey to get my daighter diagnosed and i have been trying for my second to get support since she was 18 months old. 3 times the hubby has been referred to Birmingham Healthy Minds, in just 3 years and the first 2 times they tried to sign him up for group anger management sessions, which he cannot, and will not,  attend beccause he cannot cope in social situations, the last time they called asked what they could do to help him, and then sent him leaflets on controlling anger and self help for anger issues. The point being he has no idea what help he needs beyond the fact that we know he does not cope well, sometimes not at all, outside of his safe environment. 

He is not angry as such, much like our eldest, he comes across in an aggressive or agitated way, he misreads social situations, cannot verblise his thoughts coherently or with any real accuracy, most days-but that is just the way he is, he was supposed to be given access to CBT through Healthy Minds, and that never happened.

I fought to get him re-referred to the Mental health team , where he saw a pyshcologist once, during the session she stated at his age it would be difficult to decipher and as he had some traumatic events in adolescence that wouldnt help either - We left it that she would be in touch in about 6 weeks to see how he was progressing with different dosage of antidepressants and if they could aid further.

4 weeks later he rang through to check something and was told there was information on autism in the post and he had been discharged. This was last week, still no information and no where to go! The GP said on Monday she would ask them to resend the letter they claim to have posted but as far as any help goes she just shook her head.

Alas, I cannot afford to go private and I have so little strength left to fight anyone or push any further, I just want him to get the help he needs before I lose the will entirely. :(

Appauling if they really did say he old so they can't say. Downright disgusting in fact. THe Mental Health Team cannot really say because they haven't any access to the diagnostic assessments. They can refer to have the assessment but cannot do the assessment themselves. I would actively complain if I were you about the poor service.

To get referred for an assessment, the Mental Health Team could do this is have done for me the other year and am 47 now. But failing that you had such a poor service you do need to go back to the GP and hope they are much better. Say what happend and ask them how to get a referal for the assessment. The GP refers anyway but I can't remember if it has to be someone like in the Mental Health Team or asking the GP direct. But certainly wont hurt to ask direct and explain why the Mental Health Team really badly let you down. Am so dissappointed for you. But you do need to go to the GP as they refer anyway. Unless you are able to go private. It a lengthy wait but worth while wait for me. Please go to the GP and explain everything.