New here, seeking advice re partner

[dee23]

Hi all,

As i say, i am new here, i hope this is the right place to post about an adult with possible AS, please redirect me if not! To cut aa very long story short, towards the end of last week i stumbled across references to AS diagnosis in adults on a parenting forum i use. This rang such bells with me that i searched further and ended up spending most of last weekend reading about AS in adults. What i read was making the hairs on the back of my neck stand up, so completely was it describing my partner, his behaviour and our relationship. I spoke to him and last night he looked at various things for himself, such as signs and symptoms and personal stories. He recognised all the things i saw, and also added childhood details that fitted the criteria. He said it was as though a chink of light had entered his life for the first time (he is 34). He would now like to seek formal diagnosis. He saw his counsellor tonight (he is also on anti depressants again after the last meltdown culminated in me taking him to Accident and Emergency,on the grounds of expressions of suicide, where he was politely told by the mental health liason that he should pull himself together), and came home and said "i dont have aspergers, she (counsellor) says she knows aspergers and i dont have it for the simple reason i have too much insight into my problems, and no asperger person would ever have that." Could someone please tell me if that is a reasonable statement to make? He still wants to go for diagnosis, and has asked if i would go to the GP with him. I am worried for him as he has a history of being rebuffed with medication or "there is nothing wrong with you". I could go on at very great length about his behaviour, but suffice to say AS is the first thing i have ever seen that explains everything - him, our 12 year relationship, everything. I was beyond the end of my tether with him, we have barely spoken civilly in about 6 months, but since yesterday we have talked so. He is telling me stuff about his internal battles that i never knew, and i am finding myself listening to him differently too. These last few nights are also the first in a long time i have not gone to sleep with my jaws clenched with tension and anger etc. Does anyone have any advice about the assessment process that may be helpful? Is the GP the best place to start? Can you even just go and ask for it like that? Would it be better to go private? I would be prepared to beg, borrow or steal if it could bring him some peace of mind at last. Sorry i have gone on, and bombarded with questions. These last few days have been a roller coaster and i am still reeling. Thanks for listening!

Dee

[NobbyNobbs]

i have both aspergers and insight. it comes with being an adult and having had to learn to adapt to not quite fitting in.

 

for the diagnosis. you can try your GP as a first step, but don't be at all surprised if they respond like the counsellor. a lot of GPs know very little about Aspergers and only ever see it in small children who they incorrectly percieve as naughty and out of control.

 

the more information you are armed with, the better... and the worse! if you have a lot of information you can be more specific about what you want to happen, and why you feel he needs a diagnosis. but at the same time doctors are very wary of self-diagnosis, especially relating to internet research. i saw 6 GPs before i convinced one to refer me for diagnosis... and i already had a private provisional diagnosis stating i needed assessment.

 

private diagnosis is faster and easier to get started with, since you just make an appointment (from what i understand), but costly, and some medical professionals will not accept a private diagnosis. for a lot of adults its the only option though, as adult diagnosis is a new and very neglected service. i didn't have to go down that route, but i know lots on the board have, so hopefully they'll be able to answer questions about that.

 

when discussing AS with medical professionals it's somewhat a lottery. a lot of them dont know anything at all, others have incorrect knowledge (you can't have AS if you are intelligent...) and some are very knowledgable and helpful. it really is a case of deciding how sure you are that you are correct in your thinking, and then committing to it taking a very long time to get a diagnosis.

 

my experience with realising that i had AS was very similar to what you have described, so dont' be discouraged by professionals who should know better saying silly things. until you have been assessed you won't know for sure either way. the only thing to bear in mind is that everyone has autistic traits, and it is only when you get a large collection of them which cause significant problems that it can be considered an autistic spectrum disorder.

 

this post will probably get moved to the 'beyond adolescence' section. there are a lots of us over there with an adult diagnosis of AS.

 

edited because it sounded like i was suggesting you could buy a diagnosis, whoops!

Edited March 4, 2009 by NobbyNobbs

[SarahSH]

Hi Dee,

 

I agree. maybe the person you saw was not too aware of what living with asd can mean - whatever their job title.

 

I recognise autistic traits in myself, my ex-husband and two of my children, and only one of us has a diagnosis, because his problems in accessing the world are more apparent. But he certainly has insight into his difficulties and strengths as a person with aspergers, no question.

 

I think that's an inappropriate guideline s/he's using.

 

The other thing that comes to my mind is, why would an adult diagnosis help you? I don't mean it wouldn't, I just think it's worth considering. If you can read lots about it and both begin to see your partner's behaviour in the light of what you both begin to understand about him and the way his mind works, maybe that's all you need? Well not all you need, but you know what I mean. If it makes sense to the two of you, and gives him something to frame some of his responses, then that's got to be good - without anyone else telling you what you already have discovered to be true.

 

all the best

Sarah

[The Magenpie]

These last few days have been a roller coaster and i am still reeling. Thanks for listening!

Dee

 

Dee, lots of hugs for having the courage to talk to your partner and for posting here.

 

Although I post on here to do with my adult stepson, my brother in law is AS and it has taken a lot of one to one discussions to enable my sister in law and him to live together harmoniously. According to my s-i-l the key is to work to your partners strengths so it makes him feel valued and accept the shortcomings as a little quirk as opposed to a failure. We all get on well with my b-i-l now we understand his particular quirks.

 

Love

M

x

 

[Karen A]

Hi Dee.Welcome to the Forum. We have Ben who is 10 and has AS.I thought it worth stating that many counsellors have very little experience or knowledge regarding AS .Even if a counsellor has some knowledge they are not trained or qualified to diagnose ASD.So even if the counsellor knows your husband very well indeed they probably can do little more than give a personal opinion.

Others on the Forum have much more experience re adult diagnosis than myself.However I think there are a few options.Your husband's GP may be able to refer him.However adult assessment for AS diagnosis is not available in all areas.I think the NAS website has information regarding the few centres across the country that offer assessment via the NHS so it might be worth looking there.

Several adults on the Forum have obtained a private diagnosis or are attempting to obtain assessment.

The main thing is that none of these options require the permission of the counsellor.

Ben has psychotherapy through CAMHS and has been seen weekly for two years.The CAMHS psychotherapists did not expect that Ben would be dx AS.However when the CAMHS psychiatrist in the same team assessed him he did fulfill the criteria for a diagnosis.Other staff within CAMHS have also told me that they have never had a client with AS.So I think it is worth bearing in mind that it is possible that the counsellor might have limited knowledge on which to give an opinion.Karen.

[Sooze2]

I was beyond the end of my tether with him, we have barely spoken civilly in about 6 months. Dee

 

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I have no advise to offer but I know where you are coming from.

Edited March 4, 2009 by Sooze2

[dee23]

Thank u all for those replies.

 

NobbyNobbs, thank you. After talking together about the counsellors response (she has been seeing him for a couple of months, by the way), my partner is of the opinion that, having lived in a family for 12 years (i have a now teenage daughter), he has had to learn a lot. I, in fact, had begun to despair of how little he seemed to have learned! He has also spoken of how he used to force himself to make eye contact with people to "look less of a weirdo" as he put it, he still doesnt like it, but is able to do it when he feels he should. A lot of things like this are coming to light now that we are talking on this level. Your description of what it took to get your diagnosis does not surprise me. I am not sure my partner has the strength to deal with anything like that, but i have seen a difference in him since he began to read about AS, so maybe i am underestimating him. Thanks also for the mention of "beyond adolescence", i hadnt noticed that, so i will seek it out.

 

At the moment it is my partner who is most keen on formal diagnosis. I think he is seeking validation for how he has felt all his life, and for all the times he feels he has been failed by various services, including in childhood. I have never seen him be this decisive and sure of something outside of his work life before, and even there he struggles. My gut feeling is that he has (is?) AS. As i said i have never come across anything that so clearly explains everything. The more we read, the clearer he and his behaviour become, and i think, now that he has tried looking at the world through AS, if you see what i mean, that he is making sense of things that never did make sense to him before. Also, there are working and personal relationships he has damaged in his life, including recently, and i think he would like a concrete reason for that. I think there are people he would feel able to explain things to with a diagnosis, where he may not be taken seriously without. I found the NAS sheet about how best to approach a GP, and he is going to read that. It is clearly important to him though.

 

Again, thank you all for your replies and support.

[bid]

The NAS can also give you a list of both NHS and private specialists/clinics for adult dx in your area.

 

Bid

[vicbee]

Hi Dee

 

I have just read your post and actually cried! It's the fact that you both and especially your partner have experienced things for many years that you never had an inkling that there was an explanation for and then to suddenly find that last jigsaw piece (the way i describe it) is an immense and really indescribable feeling. My 12 year old daughter was recently diagnosed with ASD but only because I (a year ago) started to hear things about autism, aspergers etc and after a particularly bad episode where i lost a good friend through a bout of my daughter's blunt remarks and lack of empathy did i look up about Aspergers on the internet. And like you and your partner - it was like a light was suddenly turned on. I never slept for literally a whole month. I spent every waking moment on the internet and went to bed with my head filled with nothing but AUTISM. I was living in Spain at the time and had already decided the week before to return to the Uk because I couldnt cope with my daughter's behaviour on my own out in a foreign country. I could not wait to get on a flight to the UK to go and see my GP but whilst i was waiting for the appointment i made diaries and wrote out all of my daughters traits in great detail and presented it to my GP. A teacher friend of mine advised me not to go in to the GP and suggest that she had an ASD as doctors and other professionals (like previously said by another member) do not appreciate self diagnosis. However in your partner's situation it is slightly different to taking a child in but i would word things carefully to your GP.

 

The sad fact is - there are probably a lot more people out there who are suffering the same way your partner has done over the years and will never know what is behind it. There really needs to be more awareness raised as ASD is a relatively new issue. I had never heard of anything but classic autism until a year ago. Now i think i know just about everything and could probably write a book! My daughter's diagnosis has been a godsend to me - the relief of knowing that I was not a failure as a parent as i previously thought was immense. I have always been on my own with my daughter since she was a baby and we had a turbulent relationship. I used to get very angry with her, i was constantly wound up and stressed out and frustrated because i could never reason with her, she lacked any empathy and i just thought i had brought up a monster. so after 12 years of thinking i was to blame for our bad relationship you can imagine the relief of realising there was an explanation - which is pretty much, im sure, how your partner and yourself are feeling.

 

In the report written by CAMHS (child and adolescent mental health services) who assessed my daughter and diagnosed her, they stated the following when making recommendations for her future education: 'Children with similar difficulties to Elizabeth are at high risk of severe behavioural disturbances in later school years and adolescence if they do not receive appropriate and highly specialised intervention and support (Cohen et al 1996)'. It is scary to think what would have happened to my daughter had she entered high school last year without knowledge of her problems. Luckily, she is repeating the final year of primary school again and I have secured a statement of special needs for a special high school where she should be properly supported. Your partner unfortunately has obviously had to wander aimlessy through life wondering why he has caused upset (or maybe not!), had various reactions from people etc and not known why, which has obviously had some part to play in the problems he has experienced.

 

I really feel for you both but I can assure you that getting a diagnosis should hopefully change things immensely. Once you and he have a better understanding of the condition you can then learn to handle situations in an appropriate way which will go a long way to help your relationship. Now that i understand why my daughter does the things she does, i react to her in a totally different way and I have changed so much as a result and so has our relationship. We have become so close now and my heart aches at the thought of what we used to be like. I dont get stressed out about the things she does anymore, i know there is a reason for it and i try different ways of approaching a situation and try to adapt to her more now so that things are more stress free. It has taken a while to get my head round it and my mum has finally got her head round it too so we work together to alleviate any pressure but i have to say that there are members of my family and friends who dont understand and are not supportive. i have as a result pushed those people away as i need only positive input!

 

Im sorry to take over your post here a bit, but i really wanted to let you know how much your post moved me. I wish you and your partner so much luck in your future journey.

 

Vicbee

[Delyth]

Hello Dee

 

My partner decided to get a diagnosis and we used the NAS guidelines to help him achieve this. There was a false start when he was referred to a non-specialist rather than someone qualified to diagnose, so do make sure your referral is to the right person. This probably happened because our GP has never referred an adult before so didn't fully understand the necessary process. The first referral concluded wrongly that my partner didn't have AS and this conclusion could have been harmful if we had had any doubts ourselves and hadn't insisted on a re-referral.

The whole process took about a year.

 

It was worth it though. Getting the diagnosis saved our relationship - we could now understand his 'odd' and at times somewhat 'anti-relationship' behaviour and our relationship is now healthy and strong enough to cope with the challenges.

 

Good luck to you. Nice to meet you on the forum.

 

Best wishes

 

Delyth

 

[dee23]

Thank you vicbee and delyth. Vicbee, thank you for your support and i am glad at the turnaround in your relationship with your daughter, she is lucky to have a mum who never gave up. The comment from the CAMHS report is so relevant to my partners adolescense, and if you have saved your daughter from a fraction of the "behaviourial issues" that my partner, and everyone around him, went through during his adolescence you have done a wonderful thing! Good luck to you both.

 

Delyth, that was useful advice. It is so helpful to hear from people who are further along the road we have just stepped onto. My partner has a GP appointment in just over a week. He is still reading more, and continuing to fit yet more jigsaw pieces in to the puzzle of his life. Even just this last week we have regained a level of communication and friendship that i thought was lost forever, so i guess i must hang onto that whatever happens next. I am so glad i found this forum. There was a moment where i went through feeling that i could be angry and bitter over "wasting my time" for the last 12 years, that i had never had the relationship i had thought i was having all that time, but it is passing, and it has been so helpful to be able to read such understanding comments from people with more knowledge than me. I have been reading older threads too, especially in "beyond adolescencs" as NobbyNobbs mentioned, and it has been especially helpful to read the words of people with AS as well, we are both gaining so much understanding all the time.