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How do we get help?

Suzuki

Hi. Both my husband and son (23 yrs.) have been diagnosed with Aspergers Syndrome in the last 18 months. This explains much of the anxiety and erratic behaviour exhibited by both of them, but does little to help any of us.We have the reports, but no follow-up. What is the point of a diagnosis if no suggestions are made following it as to how any difficulties could be made easier?

Both my husband and son are extremely high acheivers academically but social situations make them uncontrollably agitated and unpredictable. My husband saw many therapists before diagnosis who did not have a clue how to help and just put him on endless courses of anti-depressants, all of which he reacted  to very badly. The councelling sessions were unhelpful since they were misdiagnosing him and as a result, he is very wary of going to anyone now. My son has been on anti-depressants since before diagnosis because of attempts to self-harm  whilst at university. He is still given them routinely without any suggestion of therapy, as far as I am aware.

My son has started his first job as a graduate entrant in an IT firm (away from home) and is admitting to being very lonely, but is sure that nothing can ever improve his situation. He feels that he could never share lodgings with anyone else. He is multi-talented and has a good sense of humour but never forms any close frienships. He is so excited if people do invite him to anything but gets extremely upset afterwards because he feels that he made a fool of himself by not being able to relax and chat as he feels they can. He always says he regrets having gone. He is also always certain that they only invited him because they felt they had to and not because they wanted to. He has never initiated contact with his peers and has had no contacts in his home town for many years now. Consequently, he spent most of the long university holidays inside the house staring at a computer screen or pacing back and forth, getting more and more upset about "wasting" his holiday but not knowing what to do.

My husband is pretty much the same.He insists he wants to stay married but would rather be in a separate room with a book, computer or mobile phone to interact with.In any sort of social gathering outside the immediate family he will usually leave abruptly because he feels like he is about to be sick. He has never wanted anyone to come to the house, doesn't ever want to go out anywhere and definitely doesn't see the point of going away on holiday.

As a wife and mother with two other children, I would dearly like to make life less of a battleground for us all. Unfortunately, I need advice here. After 31 years in a very challenging marriage I am confused, do not trust my own judgement and am so stressed out that I am beginning to lose hope that I can stay with it.

I know I need to make a separate life for myself now that the kids are older,and i am teaching and volunteering in an attempt to do this, but it is still upsetting being virtually "invisible" to the person you are married to.

Does anyone relate to any of this? Is there actually any help out there?

  • http://www.maxineaston.co.uk/

    http://www.drmarshak.com/

    Both of these psychologists have written books on the relationship issues you are facing.

    Hope it helps.

  • By the way, it is a matter of personal curiosity, which I cannot resolve through published or website sources.

    Avoiding contact becomes an easier option than trying and getting hurt. So it may not just be that chosing to be in a room by oneself is symptommatic, but rather its a coping strategy for having social difficulty.

    Similarly when people on the spectrum avoid responding or have a blank look, is it a coping strategy rather than a symptom? Certainly lack of facial expression and sad expression is flagged up as a symptom.

     If you are getting told off all the time for having made the wrong response or having the wrong facial expression, you eventually find that the safest option is "neutral".

    My own observation of this is that NTs will readily take issue with "wrong" responses, but they seem non-plussed by neutral - perhaps because they cannot find anything to take direct issue with...

    Acting dumb becomes a safer option.

  • I can certainly relate to your son's experience, particularly working for companies where I was obliged to choose between impossible house shares or very unattractive and inadequate bedsits or digs, because I couldn't afford to buy for some years.

    As to whether there is any help out there, its a bit of a postcode lottery, and even then there doesn't seem to be much around. The attitude seems to be that if you are coping you just sort of get on with it, but if you're having problems that come under mental health, you'll be treated for the mental health but not the autism issues.

    It doesn't seem to be changing much as a result of the adult autism strategy. Professionals still have little understanding, particularly as the Triad of Impairments (which is a diagnostic tool not a blueprint) doesn't address a lot of the day to day issues. Consequently GPs treat the issues as "inadaequacy", "immaturity", depression and anxiety and either medicate inappropriately, or palm people off (slip them the equivalent of counterfeit payment) with relaxation tapes and assertiveness counselling.

    It really is all very sad that there isn't any serious professional approach to this, or any compassion. People just think the problems raised indicate weak character.

    From your own perspective there are books around for those living with an autistic partner or family member (and stuff on the NAS website). See if you can find Karen E Rodman (editor) "Asperger's Syndrome and Adults....Is Anyone Listening? Essays and poems by partners, parents and family members of adults with Asperger's Syndrome" Jessica Kingsley Publishers 2003, ISBN 1 84310 751 1

    Another option is the popular personal impression by Barbara Jacobs "Loving Mr Spock: Asperger's Syndrome and how to make your relationship work" which is on Penguin, fist published 2003 (ISBN 0 141 01184 X )

    Because people on the spectrum cannot read the full extent of social exchanges, they don't know how to respond properly, and consequently don't pick up such skills experientially. You can mimmick and learn the things you need to say on cue, so you could try teaching your son and husband right things to say, but it is still very "hit and miss".