DH went for an assessment

[V1971]

I persuaded DH to go for an assessment as I believe he is in the spectrum (and he believes it too). He was referred to see a phsychiatrist at the hospital. The phsychiatrist introduced himself saying that he wasn't qualified to diagnose for ASD but he would do his best as there is no one in our area on the NHS that can do it. To my disbelief, he said that DH is not AS. He scored 23 on the test (the cut off is 30) but what the specialist didn't realise is that DH picked the wrong answers because contrary to what he thinks, he does not make good eye contact. He thinks he has/shows empathy, whereas in fact he doesn't etc. so he would have scored over 30 if he had picked the right answers!

 

To recap, DH didn't talk until he was 4, was and still is very anxious, has no confidence, never played with other children or siblings, ate banana sandwiches only until age 16, other food would make him gag, had sensory issues, hated social gatherings, had and still has obsessions that take over his life, has a brilliant memory and knows all our friends number plates, tel numbers, birthdays and star signs, when he was a child he would line up bricks all day long instead of playing with siblings, he shows no empathy....the list goes on. How can he NOT be in the spectrum?? The phsychiatrist suggested that we go for marriage counselling instead.

 

Anyone has any advice on what I should do now, other than crying LOL. Do I go see someone else or do I resign to the fact that my life with my son and husband is different? And how do I cope in all of this?? Thanks for listening.

Edited July 22, 2008 by V1971

[Flora]

Hiya, it's for this reason that most adult assessers will not dx without someone to give information on the development and current presentation of the person being assessment. Most of the time they prefer parents to do this, or any other person who knew you in your formative years. My mum refused to acknowledge or have anything to do with it so I gave up on going the NHS route for this reason. However I eventually received a private dx and two friends who knew me since I was 11 were able to comment on things. I also was able to tell the guy who dx me what my mum and other family have said about me as a youngster, plus my own memories.

 

As for the questions about eye contact; surely the assesser should have also observed your DH and could have seen for himself how his eye contact and interaction are? I used to think I gave eye contact and would have said the same thing... when I was talking about this to my friends they laughed!!!! They pointed out all the ways I have developed of avoiding eye contact, and most HF adults/young people even kids develope their own.

 

I think your dh should seek a second opinion with someone who will actually observe him as well as take his answers at face value. Perhaps YOU could go with him next time?

 

Flora X

[ScienceGeek]

Did they ask you to fill anything out? AFAIK most places that specialise in ASDs get a family member or spouse to fill out a history of the person. As in your case that your husband doesn't realise necessarily and answered the questions incorrectly therefore a more reliable person would be needed such as yourself. I don't think it should be completely ruled out as you said the person your husband saw stated that they didn't specialise in ASD and wasn't qualified to make such a diagnosis anyway. I would either seek a second opinion or go back to the specialist and tell them that husband picked all the wrong answers and ask if you could answer the questions on husbands behalf??

[Tally]

It does not sound like the psychiatrist has really assessed your husband at all. Has the psychiatrist made any kind of diagnosis at all? He certainly should have, because you have mentioned many issues in your post that are definitely NOT NORMAL.

 

It's worth noting, however, that a diagnosis of Asperger's will not make your husband normal or provide you with additional coping skills.

 

Marriage counselling may not actually be completely useless. If you ended up with records describing your husband's lack of empathy, etc, it could be useful evidence for another assessment.

[baddad]

Hi V1921 -

 

Agree with the comments of others and yourself that this does seem a bit of a hit and miss assessment process, but I think it's also worth considering that while it's possible your husband could have a slightly 'skewed' take on his skills in certain areas that your own evaluation of those skills is based on your perception of how he should be... Empathy, for example, is a 'difficult' area, because women tend to think that men lack empathy regardless of any dx - as Baron Cohen wrote, a high percentage of women believe their partners to be on the spectrum for displaying what are perfectly normal 'male' traits. Additionally, a person may be absolutely capable of 'empathising' with another's situation but repond to those feelings in a completely different way to someone else for all sorts of environmental, social and personal reasons. Eye contact is another difficult area, because there are huge differences within the general population, again for all sorts of personal, social and environmental reasons. Lack of eye contact is often associated with social unease and discomfort, and both NT and autistic people vary enormously in terms of the degree of 'unease' which they can cope with and with the 'comfort zone' within which they can operate. In the right circumstances, many autistic people will make perfect eye contact etc, and by the same token in the wrong circumstances a neurotypical person will find themselves completely unable to maintain it or 'get it right'.

 

Hope that makes sense, but in a nutshell you've said 'he would have scored over 30 if he'd picked the 'right' answers, but the 'right' is based on your assessment of him rather than his assessment of him, both of which are equally subjective. Asking 'How could he not be on the spectrum' sort of turns the whole dx process on its head, because it implies that rather than looking for a dx you are looking for an endorsement of your own dx, which is probably 'less' objective or informed than the psychologists...

 

Of course, I'm not saying for a minute that your husband isn't on the spectrum - I've never met him so couldn't even hazzard a guess - and the description you've given does indicate that he is 'spectrummy' - for want of a better term - but whether that would meet the full diagnostic criteria (and it's worth considering that the traits you mention are being viewed in isolation) is a decision only a professional could make.

 

Hope that helps, and very best in finding some answers... I'd agree also with others that relationship counselling wouldn't hurt regardless of whether AS is or isn't a factor. That kind of counselling promotes greater understanding, appreciation and acceptance of each other 'warts and all', and while i would never describe autism as a 'wart', it is a difference that needs to be accommodated within the overall dynamics of the relationship.

 

[V1971]

Thanks everyone for your input, it means a lot to me.

Flora ~ may I ask you how much it costs to go private? I wouldn't know where to start, did you ask the NAS?

 

BTW I went to the appointment with him and gave my input, I even tolod the pshychiatrist that I thought that DH ticked the wrong boxes in the questionnaire because I disagreed with most of them, but he said that the answers had to come from him?

 

baddad ~ I totally appreciate what you are saying, but I promise you it is not all in my head. I had 4 different people asking me if DH is on the spectrum because he is very much like my son and another 3 asking me why is my DH so shy because 'he doesn't look at them in the eyes' their words, not mine. My son's Developmental Paeditrician also thinks that DH is on the ASD spectrum, but says she can't officially diagnose adults. My inlaws say that they never thought that DH would leave their home, never mind marry, because he was a very odd child....It's very frustrating!

 

The phsychiatrist asked DH 'so, if you didnh't talk until age 4, how did you cope at nursery?' as if my DH could actually remember how he was at nursery (!!) he should have asked my MIL instead. Of course DH said he couldn't remember and as far as he knew he was ok other feeling anxious all the time. My MIL should have been there to answer those questions. As far as his adult life, I commented on the fact that he doesn't have (or maybe doesn't show) empathy and I feel emotionally lonely. DH said that he does have empathy but doesn't show it because he is lazy and can't be bothered. That explains wht he did not check on me when I fell down the stairs, he says that if I am in pain I have to ask for help, if not he assumes I am ok. The phychiatrist said that because he said he HAS empathy but CHOOSES not to show it, it must be a relationship problem

 

Anyway, I am actually looking forward to going to marriage counselling because I want to be able to understand him and viceversa. I love my husband and want to make my marriage work. I will go private if necessary, not sure how to go about it or whether I can afford it yet.

Thanks for listening, it means the world to me.

[mossgrove]

You need to ask for another referral to someone who is qualified to diagniose ASD's The test I think your husband did provides background info, it does not decide the diagnosis issue one way or the other. What has happened so far is equivalent to doing one of those on-line questionnaires, you havent had any worthwhile professional input at all.

 

Simon

[baddad]

Hi v1971 -

 

I wasn't suggesting it was all in your head - sorry if I gave that impression

I was just making the point that interactional dymnamics differ from person to person, and the way that one person perceives another person depends on their own make-up, preconceptions, experiences etc...

 

Hope you find some answers soon

 

[Flora]

Flora ~ may I ask you how much it costs to go private? I wouldn't know where to start, did you ask the NAS?

 

Sorry I haven't a clue how much it would cost. My friend's friend's (!) husband is a consultant psych, and he just happens to have a special interest in un dx adults (he actually works mainly with people in prison ). My friend was talking to him about me (after he'd met me once) and he offered to see me for free.

 

I actually once rang the NAS and didn't find them very helpful. They pointed me to their database search thing on the NAS website and I got really stuck with it. However, other people on here have contacted the NAS and had more help.

 

I know Sunderland have recently started an adult diagnostic service under the professor there. He had offered to see me as their first patient but I needed funding from my local PCT and my GP told me that I had as much chance of getting that as flying to the moon so I didn't bother trying. However, they do take private patients but I think it's quite costly, but not sure how much.

 

Flora X

[V1971]

Thank You very much everyone, I have located a private clinic and will start saving up for a private assessment.

 

baddad ~ no worries, I knew exactly what you meant

[Delyth]

My husband was wrongly referred to a non-specialist when he was first seeking a diagnosis too. After this initial mistake, he was re-referred to the NAS communication centre, Bromley, and the consultant there was able to collect information from myself and my husband's mother as well as from my husband himself and diagnose accurately. The experienced consultant was able to probe further than taking an initial answer to questions and could re-word things to make sure she was getting an accurate response because she understands that people with AS respond to questions very literally which can often lead to misunderstandings. (eg. The non-experienced consultant asked my husband if he uses the underground when travelling around London.(?!) My husband answered "Yes" but, in truth, the answer should be "Yes, once and I was very stressed by the experience and avoid it".

It is very important that you get a proper assessment from an experienced clinician if this is what you and your husband want. Having the diagnosis of AS saved our marriage as we could understand my husband's behaviour for what it really was rather than thinking it was 'bad behaviour' that he chose not to change. It has helped my husband understand himself much better, which is the first step towards having a good relationship with others.

I would also send a word of caution regarding having any marriage counselling before you have an assessment - IF your partner is AS and the counsellors have no experience of AS it could be a disaster for your marriage. Non AS counselling is very different to counselling for people with AS.

Have you read any of Maxine Aston's books, or Tony Attwood's? If not, I would recommend them. We found them very useful.

 

I have set up a support group for partners that you are welcome to come to too if you are in London and would like to talk. See: www.whydoesmypartner.co.uk for details or email me.

 

Look after yourself - you are dealing with a lot of challenges and have a very complicated life. Hugs to you.

 

Delyth