Nobody believes my diagnosis - are they right?

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I love some of the responses you have had in this thread, I am so impressed with the wisdom of people at WrongPlanet.

When someone says you don't look autistic, a useful parallel is depression. It can happen to anyone at any functioning level, but it manifests differently in someone who is high functioning, has the emotional control to paste a false smile and doesn't cry, than in someone whose emotions are out there for all to see. Did anyone see Robin Williams' suicide coming? Apparently not.

Best of luck to you.

Good analogy! Very true. I think a lot of people in this world feel uneasy when it comes to illnesses/syndromes and other weird and wonderful human conditions that they can't actually SEE. I suppose a person's reaction to someone else's diagnosis says more about them and their own ability to comprehend than anything else!

I am loving this site, too! So impressed with the level of thought that goes into these posts.

I am so sorry you are going through this. To live so many years without being diagnosed, knowing something was different and then have people tell you it's not real must be incredibly hard.

One thing I have noticed is that those who have treated me with disrespect, those who have treated my son with disrespect are the same type of people who claim that neither of us is really autistic. When I think about getting a diagnosis just for myself, but also to shut them all up, I realize that my son has not one, but 3 diagnosis and some people still choose to NOT believe the diagnosis. My uncle, who without a doubt is an ASPIE once told me "you know, people believe what they want to believe...it doesn't matter how much proof you show people, most people have their minds made up about most things in life...regardless of what you show them as proof, they won't change their minds, don't waste your time." I used to think he wasn't really right, that he was really just angry at the world, as he has been treated so unfairly all his life, but now I realize he is 100% correct.

You need to know in your heart, as I think many here do, that without a doubt this is who you are and once you do, it is irrelevant who believes it or not.

Thank you for understanding. I think your uncle was probably right, although some people do seem more willing to learn than others. Depends how comfortable they are with themselves, I suppose. None of us like to leave our comfort zones!

If getting an official diagnosis would help you with your own self confidence (it has helped me to a degree) then go for it but like you say, don't waste your time doing it to say 'told you so!' to the non-believers as you will no doubt end up feeling frustrated, disappointed and cross . Sorry your son has come across such narrow mindedness, I hope it hasn't affected him too much. Probably going to go though this with my daughter, at least I've had some experience of my own now which might help me to protect her.

Sorry, Veteran - I replied to your message with haste (at work - I must try and remember that I really can't multi-task!).

You're absolutely right, knowing who you are in your heart is all that matters, really. I think I was particularly disheartened as my husband is usually so supportive of what I do (however bizarre!), so his kind-of subconscious refusal to accept my diagnosis has been really heart-breaking and very hurtful. I think it could be something to do with worrying that our daughter might have it, which I think he would find hard to accept on some level. The rest of them can get knotted, really. The GP infuriated me as she was so unbelievably patronising and I would have expected a lot more from her but as your uncle rightly said, they will believe what they want to believe. Even if they are being mightily unprofessional!

I'm just hoping that the Asperger's counsellor will be able to help me get to the bottom of why my husband is so uncomfortable with this. He actually encouraged me to seek a diagnosis in the first place and he came with me to the assessment, so his denial or whatever it is has been a shock.

I do still think that getting an official diagnosis for yourself is important. Aside from the issues of other people's doubts, my mind definitely seems calmer since finding out for sure. If you do go down that route, learn from my mistake! Don't tell anyone!! !

Your husband may just need some time to really get to grips with what autism is and get used to the idea that you (and possibly your daughter) are autistic. My own husband is a great husband and has been a huge support to me over the years but when this subject first came up for us about 5 years ago he had a somewhat similar reaction (although he is well aware I fall outside the "norm"). Even when the mental health team first brought up the issue of diagnosis some months ago (I hadn't mentioned it because I was convinced they wouldn't believe me) he was still dubious. Since then he has clearly been doing his own reading and has now not only recognised that I (and most likely our daughter) am autistic, but thinks he may be too (not at all an unreasonable suggestion if you knew him).

The point is that it has taken him a while to get there and me trying to force the issue probably wouldn't have helped, but he did make that metaphorical journey because he cares about me. Likely your husband will do the same.

Ellykeeling - it sounds like it is your GP that needs a crash course in understanding ASD, and ethics.

Fortunately for me no one in my family has denied my diagnosis, but on the way in there were a couple of incredulous responses to the news that I was going to be tested for ASD.

Excuse me while I shout, if I may, NONE OF THESE PEOPLE WHO DISBELIEVE YOUR DIAGNOSIS HAS THE SLIGHTEST ENTITLEMENT TO THAT BELIEF WHATSOEVER. Spotting ASD is a highly skilled and difficult thing, and it is very very likely that your diagnosis is correct.

PM me as a fellow Brit if you feel the need (diagnosed recently at 58), and allow me to join in the chorus of support. Welcome to the wrong planet.

People like what works. If you can show that having a diagnosis is usable toward something positive you may find people more accepting.

Are you very far along? Being pregnant and having a baby is exciting. Your first? I would think your husband might become anxious about the baby and wish your primary focus be on the baby? That does not have to be bad, it could just be concern for both of you.

Sometimes people think they're being supportive by disagreeing with your diagnosis. If you said you got a bad haircut, for example, people might say, "No, it looks fine, really!" to make you feel better. Some people think the same thing applies for responding to an autism disclosure.
That said, there's a difference between a casual acquaintance saying this and a medical professional. I wouldn't continue seeing a doctor who laughed at an autism diagnosis. Or any diagnosis, really. That's just unprofessional.

AS does not have a known molecular etiology.

Rett syndrome has a known molecular etiology: mutations in the gene MECP2 located on the X chromosome.

William's syndrome has a known molecular etiology: deletion of about 26 genes from the long arm of chromosome 7

AS has no such clear genetic definition (only theories), it is a psychiatric diagnosis only, and many doctors don't view psychiatry as real medicine, the psychiatry field is generally not taken seriously nor respected much by the medical doctors, including neurologists (and no, not only the Scientologists).

AS and ADHD will always be seen this way (as not serious conditions, especially by the non-psychiatrist medical body) until the biologists find the real tangible genetic/biological causes, if there's any, and become medical diagnoses - like how it happened to Rett Syndrome, which was removed from DSM (was lumped under Autism) after discovering its real cause.

Hi Ellykeeling. Give him time to adjust, as I think you hit the nail on the head with your comment above.

I also had family react badly and reject my diagnosis, mainly I think through guilt for the the times they unknowingly made my life harder. I've lost count of the 'you can't be autistic because you're too <successful/married/intelligent (insert assumption here)>. I usually reply, 'on a bad day when I'm spinning around in circles flapping you'll know I'm on the spectrum, but thanks.'

Also please change your GP ASAP. She is obviously too ignorant to be providing you with healthcare and the support you need right now. I also get quite useless once a month (clumsy & stuttery), it's not too bad as long as people keep away from me in the kitchen

It gets easiest once you know *Why* you're reacting in certain ways, and you can start to build up a toolkit to deal with different situations.

MsB

Many GPs don't believe in psychiatric diagnoses - many medical doctors don't view psychiatry as real medicine and even as real science. Sorry, but this is a fact of the general opinion of medical doctors.

Medical doctors deal with diagnoses of diseases/syndromes that exist in their medical books only, diseases/disorders which had been proved by biologists and scientists - and therefore defined biologically.

AS is only a psychiatric diagnosis studied only by psychiatrists, it doesn't exist in the medical books studied by Med students, it has no biological definition at all. The AS diagnosis is just a list of behaviors like most psychiatric diagnoses.

This has nothing to do with the OP's gender btw - this general views of medical doctors (and many people) on AS will not change anytime soon.... UNTIL the biological cause of AS is determined and the diagnosis moved to medical books.

I stumbled on a interesting article - reminding me of this thread:

http://www.npr.org/2010/12/29/132407384 ... cant-agree

So even psychiatrists can't agree.

Allen Frances said that "psychiatric diagnosis still relies exclusively on fallible subjective judgments rather than objective biological tests"

Do you know who is Allen Frances? He is the guy who introduced AS into DSM 4- and ironically, he is the guy who worked hard to remove it from DSM 5. Don't believe the news stories that AS was simply merged with ASD in DSM5 - it was removed because the ones who put it in the first place, now consensually think it was too unscientific and went too out of control- and they wanted to apply ASD only on the obvious severe cases.

And this is not the opinion of some low-school psychiatrists but of the most elite ones who write official diagnoses.

If even elite psychiatrists can't agree what's AS then how do you expect medical doctors to believe it and take it seriously?

This is why I can't take the endless professional diagnosis versus self-dagnosis debates seriously.

I'd say the best thing to do is to see if information about AS is useful to you - if it helps in your self-understanding, communication with others, planning your life and raising your kids.

I think it is very hard to convince someone of what is going on inside your head unless they are already sympathetic to you and willing to listen in the first place. Family and friends can have a million different reasons for denial.

I haven't told anyone of my suspicions other than my husband. The way I reason, they should all respect me anyway, diagnosis or no. I give out little bits of information. I told my new neighbor not to be modest, that if she tells me she does not want more coffee, I will assume she doesn't want more coffee, and that I am not good with hints. She just doesn't know quite how bad I am with hints.

I know that the head of the APA was totally opposed to the DSM5 revisions and remains so. He thought it was appalling that they continued with the changes and has been extremely vocal and condemnatory of the committee who voted to do that.

Delete this Capchta aided double post

Last edited by ASPartOfMe on 29 Oct 2015, 8:25 am, edited 1 time in total.