Nobody believes my diagnosis - are they right?

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Hi, I'm new here. I was diagnosed with AS about eight months ago, now. It was a lengthy process and my husband came along to the assessment, listened to everything and he added a lot from his point of view. In a way, it felt like he was just using it as an opportunity to vent as since then, he has said on many occasions that he doesn't think I have it and thinks I will just snap out of it one day! He has also taken the mick when I've mentioned it, making out that I am going to be using it as an excuse for everything ('don't tell me, you can't do that because you have Asperger's!') etc and he has even said that he thinks it's made up, 'like gluten intolerance and hayfever'. He's not the type to read or educate himself on the these matters, even if he does insist that he read the book that I bought him to enlighten him on our relationship difficulties. My GP was patronising and rude and made it clear that she didn't believe it (I am 37, female, have a good job, own a house, am married with a child etc - tick all the NT boxes from the outside so to them, that seems enough proof!), even my midwife laughed out loud the other day when I mentioned it. Friends have not mentioned it since I told them, only my brothers and Dad who also clearly have it seem to believe me. Am I EVER going to get to a good place about this? Ive battled with mental illness most of my life which I put down to being misdiagnosed. Trouble is, even I am now starting to doubt it. Any advice would be so gratefully received. Thanks.

I would suggest attempting to educate people about other individuals with autism/asperger's. I certainly get the reaction "You don't look like you have it. You seem normal to me" a lot when I tell people I'm on the spectrum.

Another one I get: "You run a succesful website, have a cool car, and live independently in Los Angeles where you work on TV sets and hang out with movie stars. There's no way you have autism or asperger's" Actually, I definitely do have Asperger's.

It's because of a lack of understanding of the fact that it is a spectrum where some individuals are much more affected.

If you got diagnosed with AS, you likely have it (it's not the kind of diagnosis that doctors are just casually handing out- it takes a lot of observation and careful analysis to diagnosis the condition)

I've had those doubts before. The best thing for me was to meet other people with autism. Is there a meet up/support group in your area?

I am in my late thirties, married, and have two children. Your doctor's response to you is very ill informed. Feel free to pm me if you'd like.

All I can add is this:

You gotta develop a "thick skin". People will have misconceptions of ASDs, when they are not completely ignorant of ASDs.

I was discussing ASDs with a pediatrics nurse, and listed the most common features (i.e., clumsiness, shyness, avoidance of sensory stimulation, "stimming", and special interests), and she said that I would fit the profile, except that "... you don't also wet the bed, play with fire, and torture little animals".

When I suggested that she read the entry in the DSM-IV to correct her lack of understanding, she fell back on her credentials as a pediatrics nurse to validate her alleged "expertise" in ASDs.



People will say any (stupid) thing that comes to their minds once they learn that you or a loved one has an ASD.

For the time being, and as a self-protective action, I would suggest that you stop disclosing to anyone new that you have been diagnosed.

Reading your post - firstly, I am sorry to hear of the various invalidation you have encountered; secondly, living with continuous invalidation at home on a daily basis is a risk to anyone's emotional and psychological well-being.

It is impossible to know what your husband's motives are in this and efforts to change his resistant and dismissive attitude will possibly only drain your emotional energy to a point where despair sets in.

One thing I wondered though is whether in your earlier life, you were parented in a way, or somehow learned, a pattern of forming relationships with invalidating people. Could I suggest you consider exploring this? I don't disbelieve your diagnosis and I know the weird, insulting, stigmatising and incorrect stereotypes even some very well educated people have about what people on the spectrum "are like".

Diagnosis can be the start of a personal journey of inner development for you, and to allow the uninformed to make you doubt yourself is to give them your power, "to give your power away" as psychotherapists would say.

There will always be ignorant people who want to rain on someone's parade; but this journey is about you, about your reality, your needs, your self-understanding, your inner relationship to yourself, and there are some wonderful things to be gained in that journey to self-acceptance.

Thank you all for taking the time to reply. All good advice and also reassuring to learn that I am not alone in this.

My husband isn't usually the type to invalidate, this has been unlike him. He has always been so supportive so his unusual reaction to my diagnosis has really thrown me. I know I need to dig deeper into this so we now have a couples' counselling session booked, as of today, with Action for Asperger's so we will see what that drags up.. ! As for friends and GP/midwife, I think I was perhaps a little naive to expect positive reactions, seeing that Asperger's syndrome is still something that few people know much about. I am still mulling over the diagnosis myself, so perhaps it isn't the right time to share it. Once I feel better educated on the subject then I might be in a stronger position to educate others.

Being pregnant and having an oestrogen-soaked brain not helping much, either.

Thanks again.

Hi Elly,
Can I ask what the book you got is? My wife (NT) and I (HFA/Aspie) are trying to sort out our relationship and any useful resource you can recommend would be appreciated.
Kind regards,
soldersplash.

As has been suggested, if I were you I would definitely put the brakes on disclosing to any more people right now.

Disclosure itself is a whole "thing" too, besides diagnosis and just the business of living with an ASD. Some people are good with having everyone they know aware of their diagnosis, and life seems to work well that way for them. Others are severely affected enough that everyone knows anyway.

But for some people who, to the Joe Public average, uninformed onlooker, doesn't "look" or "seem" autistic, disclosure to all and sundry doesn't work out, and just gets them into serial weird conversations, opening them to cynicism, ridicule, denial, invalidation, and long arguments --- when the arguers and deniers are not even professionally qualified to refute your diagnosis! What makes them so sure, if they're not the clinician, but your clinician deems you on the spectrum? Keep that in mind.

Some people choose to disclose to no one at all except a parter, but no-one else, and they consider it their own private business and nobody else's. Some people disclose on a "need to know" basis.

It's best for now not to get into these pointless round-and-round things where you find yourself justifying your diagnosis to people unwilling to accept it. It's good that you're seeing a counselor with your husband. He needs to get past this phase of believing it's"just going to be your excuse for everything" -- or living with this man would be seeing the end of its days, if I were in your shoes.

Soldiersplash: Yes of course, the book is called 22 things a woman with Asperger's syndrome wants her partner to know, by Rudy Simone. There is also a man's version.

BirdInFlight: Agreed. I think I just needed to hear all this from other people in the same boat. Initially, I felt like shouting it from the roof tops because I was so pleased to finally have an answer to my many life questions. However, as time has passed, I have started to regret telling people as I am learning that other people aren't necessarily going to be as pleased for me as I am! And as far as the husband goes, I think he knows that , hence agreeing to the counselling. I don't think he actually has a blooming clue about how he feels about it which is why he's trying to trivialise it.

Thanks Elly,
Found the AS man NT woman version of book. Just ordered from amazon
22 Things a Woman Must Know: If She Loves a Man With Asperger's Syndrome by Rudy Simone

Got carried away and ordered these as well:-
The Asperger Couple's Workbook: Practical Advice and Activities for Couples and Counsellors by Maxine Aston
Alone Together: Making an Asperger Marriage Work by Katrin Bentley

The reviews seemed positive. In a few weeks perhaps I'll be reviewing them myself.

kind regards,
Soldersplash

I think I'm going through this right now - but with self-diagnosis. Made the mistake of mentioning it to family, they brushed it off as I handle myself well. Tried listing the symptoms etc. but even after many matches and perfect fits, they discard it based on one aspect I don't demonstrate strongly.
My only response so far, aside from disappointment, is that autism etc is a very personal, internal difference. Of course the people around you lack the information to assess you effectively. I'd take comfort in the fact that you and your doctor certainly know more on the subject than your friends/family.

Warm welcome to WP, glad you have joined up.

Veteran; thank you! Great to know this site exists, now.

Soldersplash; please let me know how you get on.

Emu egg; sorry to hear you're struggling with this. Families are funny like that, I suppose throwing a new label into the mix (which could involve others, too) can seem unsettling and even threatening. Like you say, only you and your doctor can really know what's going on in there. I care too much about what other people think which is why I allowed myself to get into such a position of doubt. Might go and dig out my diagnostic report to read again! Good luck with your journey of self discovery. I hope you find the answers you are looking for.

If anyone doubts you, I suggest asking to see their degree in Clinical Psychology.

Everyone may be entitled to an opinion, but that doesn't mean their uninformed opinions aren't utterly worthless when compared to the informed opinions of people who have actually studied the subject matter.

Haha! Actually, I have a friend who is a Clinical Physiologist and she has been one of the worst! Then again, she hasn't really had much experience in the autism department, yet. Good advice, though. It was my GP's reaction that annoyed me the most. When I suggested that she read my diagnostic report, she said 'it's sixteen pages long!' and didn't read any of it. I went to her to discuss my PMT as it worsens my AS for a week or so and turns me into a bit of a vegetable. When I said 'I'm really dreading the menopause', she said (patronisingly) 'well hopefully you will have got over your problems by then'. I was so gobsmacked, I didn't manage to point out that Asperger's is a life-long condition. Still makes me choke with rage when I think about it.

This has all just made me regret telling anyone. I naively thought that people who cared about me would be pleased for me that I finally have some answers. A couple of my family members and a couple of friends have reacted how I expected but some people seem to have really distanced themselves. Oh well. Sorts the men from the boys, I suppose.

*worsens my AS symptoms, I should have said. I find communicating much harder during that week and my emotions get the better of my brain and I become trapped inside of myself. It's torturous. Hence my trip to see the GP to get 'help'.