Diagnosed with Aspergers 2 years ago, now told I never had i

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Hi there everybody,

2 years ago I was diagnosed with Aspergers by a specialist psychologist at an autism centre. She used the ADOS test, I had to do a bunch of different activities, supplied a 17 page account of my developmental history, a personal interview and 2 reports from my dad and brother describing me in different areas. The psychologist told me that "I have no doubt that you have Aspergers".

I felt like my entire life made sense when that happened. My relationships with my family were so bad, with them hating me for being 'rude' or doing things without knowing they were hurtful, that half my siblings didn't even speak to me.

Understanding Aspergers has made me determined to act less like I have it. I now take medication - Concerta, Risperidone, anti-depressants... My anger and constant irritation has subsided. I can make eye-contact without feeling like I want to hit the person. I don't descend into panic if I walk into a room with dim lighting after leaving one with bright lights, or if there are sudden temperature changes. I follow advice from people about how to interact better. My boyfriend trains me on how to speak to people better. I meditate, work out, ask advice on how to behave. Deliberately socialise with people and restrict myself from obsessive working. I still can't handle noise, understand irony, I'm still blunt and 'rude' and I react badly to changes but I no longer shout at people.

I've been seeing a psychiatrist at the same autism centre now for a year. I've met him maybe 8 times for half an hour. I never talked to him about Aspergers symptoms because I just accept them and deal with them.

Today he told me he thinks I don't have Aspergers. My boyfriend agrees. I'm utterly devastated. How can I have spent 2 years living a lie? I don't know what to believe now, or how to tell my family that it was a mistake.

My psychiatrist discarded the idea of me having Asperger's as well. I didn't push it, he gives me meds for anxiety and insomnia, there are no meds for a bit differently wired brain. But I know this feeling, my life has also always been a mystery until my therapist suggested the AS key - and it fitted, it made all my trouble logical!
Then the psychiatrist discarded it and again I didn't know who I were. That confusion is the worst!

Two years on, I don't really care. I don't need disability allowance, or any other official recognition. I'm weird. I don't need papers for that. I lack the "natural" social intuition most people rely on. I suffer a lot of pain-like feeling that I only recently identified as sensory overload - I had no term for it before, couldn't describe it or name it before giving a chance to the "sensory issues" idea.
I'm working with my therapist on several traumas that have happened to me because of my weirdness and other people's ill practices. I'm very easily overstimulated. I've started to wear earplugs in public transport, screw what other people think and the other people actually don't care.

I probably don't fit the criteria, because they mix up core symptoms with effects of being a black sheep all your life and traditional masculine traits that had been first observed. Nevertheless, if you fail to see the social "obviousness", if terms of overstimulation, shutdown, meltdown and sensory issues describe your state better than "standard" emotions - here you are. You are Yourself

We're all individuals and aspergers can look very different in different people and that is also what my psychatrist who diagnosed me said. She said that some people need lots of help, some don't need any at all and my aspie friends are quite different from each other while sharing certain qualities that are typical for this diagnose.

If you were diagnosed I think that you most likely have it, especially if you feel like you do. It could be you haven't talked about your experiences with aspergers much that could make your psychiatrist doubt it. I knew I had aspergers years before I managed to go have it professionally diagnosed and if someone told me now that I don't have it I wouldn't care. I have friends with aspergers, I started to make those friends before I even got the diagnose and we relate to each other a lot and they're the only real friendships i've been able to have without them ending due to misunderstandings etc. in my life.

To me you sound like you're an aspie. It could just be you're really good at passing as NT, I am too and that can make people doubt which I think is just silly. We know what we feel on the inside regardless of what is visible or not to other people.

From my experience, it's quite possible for psychs & other professionals to be wrong OP. There's nothing wrong with saying your autistic if you believe your on the spectrum.

My mom has suspected me of being on the spectrum since I was a toddler but our GP just laughed & said "Nick's just being Nick". When I got re-certified for dyslexia accommodations between 9th & 10th grade, the psychologist(or whatever he was) suspected me of being on the spectrum but he wasn't qualified to diagnose it. I saw a psychiatrist at 20 because I fell into a psychotic depression over my 1st realtionship ending & she thought I had Aspergers when I had my 1st appointment & she referred me for official testing after a few appointments.
Aspergers was ruled out when I was officially tested because the quack thought I communicated too well verbally & seemed too intelligent to have anything on the spectrum. When he tested me he NEVER asked me anything about my childhood or about social issues. I just made patterns with blocks, found what was missing in pictures, organized things ect.
My psychiatrist still listed Aspergers on my file & I qualified for SSI because of physical disabilities but I listed my mental stuff too including Aspergers. Social Security believed I had Aspergers based on her report. I had a few reviews sense then & was referred to a psychologist 3x by Social Security Administration because I had quit seeing my psychiatrist & wasn't seeing anyone about mental stuff other than my GP. All 3 of those psychologist believed I had Aspergers & my GP does too.
I also spent aLOT of time on this forum after having problems on other sites parlty because of my Aspegers. Based on everything I know about it, I believe I have it & i say I do but the downside is that I can NOT qualify for any services or assistance related to Aspergers because I do not have an official diagnoses by someone qualified to test for it. I was told before I got tested that it could not be diagnosed 1ce I was over 21 because in order for it to be autism, the problems had to develop before I turned 21 & there is no way to know if anyone has those things before they turn 21 unless the person is tested before they are 21.

Last edited by nick007 on 24 Oct 2018, 9:08 am, edited 1 time in total.

If you always feel awkward and irritable around people, probably you are an aspie.
Sorry off topic, but I self-medicated with atorvastatin (cholesterol-lowering drug) and it abolished the rest of my asperger symptoms, make sure to take no more than 20mg to prevent myalgia side effect and take telmisartan 10-20mg (antihypertensive & diabetes drug) with it because statin tends to worsen your disease if you have diabetes. Telmisartan can be used for depression too. Don't forget to consult with your doctor about interactions between your current meds.
Caution, atorvastatin may worsen your irritability and cause slower thinking though (but its a benefit for a hyperactive person), cheers

Last edited by cryptx on 24 Oct 2018, 10:50 am, edited 3 times in total.

https://en.wikipedia.org/wiki/Atorvastatin
Srsly? It's a medication for cardiovascular disease, nothing psychiatric at all
Don't self-medicate with something messing with your cholesterol levels. Even the standard use of it requires regular lipidograms.

Yeah, it was the last puzzle of my aspie medication journey. Google "More Support for the use of Statins in some Autism". Can't post the link since I'm new.
It works, feel like a normal person after taking it, probably because it normalizes excess protein production in my brain which caused by abnormalities from autism gene. Been self-medicate for three years since my doc gave me sertraline, worse antidepressant ever, avoid it. Make you feel like a zombie, suicide feeling etc. If you don't like sertraline like me, you may want to switch to once a week fluoxetine (long metabolite half-life, dose only once a week) or daily low dose escitalopram. Never go to a doctor again after that and never been better. Also, avoid simvastatin and lovastatin, they have the worst side effects on diabetes.

Last edited by cryptx on 24 Oct 2018, 11:39 am, edited 9 times in total.

Has he said why he doesn't think you have it?

Oh my gosh, I can't believe some of these stories about people being told they don't have it, then do, then don't...
Thank you for the advice everybody. One of the reasons the psychiatrist gave was that I am autonomous and independent and that I have a lot of personal insight about my difficulties and emotions, which he says is unusual for Aspergers. I'm like, well, I spent like 6 years in therapy and do insight meditation everyday... I also find it unfair because at age 24 I was an orphan and before that I was the main carer for a terminally ill parent. I had no choice but to just get on with the damn job, being dependant was not an option, and if I didn't work, I didn't survive, so sadly the idea of quitting work because of the depression and anxiety I constantly had and constantly needed therapy for, it just wasn't possible (I have no right to social benefits in the country where I live).

I just feel like I'm being punished in a way for having developed. My boyfriend said he also thinks now that I don't have it, because he has seen me change so much in the last year and a half. He says I have less problems with noise and speak to people more diplomatically. But I spent 3 grand changing the windows in my house this year to noise-insulating windows and came home crying for like 6 months because of cars honking at me whilst cycling and the pain from the noise. I was CONSTANTLY irritated and angry and regularly shouted at or even threw things at people, felt like I would have a panic attack or hit someone if I had to make eye-contact with them, but now I take Risperidone and the anger/agression has significantly subsided. I'm also on an anti-convulsions medication that does seem to make my head feel less like it's frying from sensory overload, but I STILL don't understand irony, why people communicate the way they do, and just last week I had to pull over mid-driving lesson and splurge to the teacher that I have autism and thus needed her to give me way less information and give me time to respond to her verbal instructions. Now I feel like all of these difficulties, all of these battles, all of these daily struggles, are for some reason I can't explain because if I don't have Aspergers then what the hell is wrong with me?? Of course, I have never spoken to the psychiatrist about any of these things, because he's never really asked.

A friend has commented that I am a woman and the psychologist who diagnosed me was also a woman. She then put me in touch with another female psychologist who ran a support group for Aspergers in women, and there I met an autistic friend who did a Masters in neuroscience researching Aspergers in women and she said she's convinced I have it too and she also saw this psychiatrist for 4 years and she doesn't believe he knows what he's doing. So I wonder if the gender difference could explain why these two specialists working at the same autism centre might disagree?

It's possible.

Sometimes, Asperger's/Autism presents different in women than men, though there are women who "present" like a man.

That's terrible, my symptoms are so slight and I've got so good with masking that I'm pretty sure that I would get a different diagnosis depending on who and when

I don't cling to my Aspergers diag. cause it's basically just a professional opinion. I know, from experience, that I'm on the spectrum though and apart of this brotherhood/sisterhood and take solace with that

My dad has autistic traits - but it isn't clinically significant enough to warrant a diagnosis. I assume this is the way the person you are seeing feels about you. They can't, however, claim you don't have AS just based on a few 30 minute meetings with you, especially if they are not a specialist in developmental disorders. If you strongly feel that you require a second opinion, then go and seek that out, but from a specialist who will conduct the appropriate tests. That's the only way to know for sure, and will hopefully eliminate any sense of doubt and confusion you currently feel. Good luck.

I'm sorry to hear about that happening to you. Like others have said, I would ignore the psychiatrist and go with the first professional that assessed you as being valid.

That's the one MAJOR concern I have with the mental health field. It's in many ways an "art" rather than science at this stage in human evolution. In other medical related fields, there are absolutes that can be relied upon. A blood or tissue sample can be taken and a pathologist can, with certainty, identify cancer cells if they exist.

Mental health scares me for that reason.

Given that a psychiatrist's main job is to prescribe medication, psychiatrists are experts only on those mental conditions for which medication can be prescribed. They don't necessarily stay up-to-date regarding those mental conditions for which medication cannot be prescribed. Hence, regarding a diagnosis of autism, a psychologist who specializes in diagnosing autism is much more likely to be on-the-mark than a psychiatrist, I would think.

Furthermore, it seems to me that if a diagnosis FEELS right and has helped you improve your life, then that, in itself, would be strong evidence that the diagnosis is correct.

Last edited by Mona Pereth on 24 Oct 2018, 12:54 pm, edited 2 times in total.

Yeah, OP, that's how society rewards aspies/auties that became masters of masking their autism. You know best whether your symptoms match the criteria for ASD! Often people bluntly say I can't be autistic because I'm extremely well equipped verbally... we all know that public perception of autism is far off! (Even doctors often are wrong). If you clearly state significant sensory and social issues, that might be a good indication.

Have you filled out the aspie quiz? Took a questionnaire to calculate your AQ? Those can be done online for free, are good indications in my opinion.

I wish you all the best!

That makes sense. With that in mind, if it were me, I would be quite irritated at a psychiatrist who may be making an uninformed and incorrect snap judgement on something as critical to a person as this. I'm inclined to feel like saying "shame on you" to that psychiatrist.