How did your diagnosis come about?

Post Reply New Topic

I have always had struggled my whole life, but I never ever connected my difficulties with Autism. I just thought that I was just excessively shy and had low self-esteem due to bad childhood experiences. I tried to fix my social deficiencies by exposing myself to social events but with little success. I also blamed all my other problems on a lack of experience and thought they would go away with practice.

The last year, I had a lot of stressors in my life, both at work and home life. My new office environment was so bright and so loud that it took all the energy I had just to cope being in the office. I barely got anything done because I was just trying to survive. My eyes was hurting so badly and the noise was drilling itself into my head. My relationship with my wife was also falling apart which contributed to an almost overwhelming anxiety and depression.

I finally decided to seek help with my failing coping skills from a therapist. At the end of the first session, he said to me "We try to avoid putting labels on people, but sometimes we just have to do it. You have Asperger's Syndrome." I thought he was nuts at first, but I realized that he was right after I got home and looked it up myself. Apparently I'm a very obvious case and I was formally diagnosed one month later.

How about you? How did you end up with your diagnosis?

I was diagnosed as a toddler over 5 decades ago. At that time the very word "autism" was new! It was almost exclusively diagnosed in male children. I was the first born child to my mother, but she noticed that I was "different" from other girls my age. She described it as a child trying to do things WAY beyond it's physical abilities. My father was a verified genius at the time (Mensa Society member) and an aeronautical engineer, so she suspected I might also have a higher than normal intelligence and require more intensive instruction.

I was tested at about 24 months old at a "large medical facility" in the greater Los Angeles area. The results according to my Mother were succinct: "genius with borderline autism".

She was told that I would probably outgrow it, and to not try and socialize me. I was thus left to "entertain" myself by spinning spoons in the corner and banging my head (literally) on the walls.

I was completely unaware of the diagnosis until I experienced repeated life failures with no clue as to why I was having such a hard time navigating relationships, work (I graduated college summa cum laude), and the mundane activities of daily living. I kept experiencing "meltdowns" but had no context to understand what was happening to me.

My Mother casually mentioned the diagnosis to me when I was well into my 40's and had experienced another major life failure. I was stunned!

Since then I have "passed" nearly every test available to evaluate autistic characteristics, and found a therapist with a sub-specialty in autism who re-confirmed the original diagnosis.

"I tried to fix my social deficiencies by exposing myself to social events but with little success. I also blamed all my other problems on a lack of experience and thought they would go away with practice."

Same here. Alas that did not go away.

Hope you are doing better now. Having a diagnosis has certainly helped me to know what to expect from myself.

I met one of my son's teachers at a university parent-teacher mixer, and she started asking me questions that turned out to be basic diagnostic questions for ASD. She then referred me to one of her colleagues, who gave me the initial AS diagnosis under DSM-IV. I then asked for a second opinion, and my diagnosis was reviewed by a three-member panel, who modified my diagnosis to PDD-NOS under DSM-V.

They wanted to continue to study my case history, and determine how I was able to earn a degree, hold down a job, and stay married long enough to father some children; but since they weren't going to pay me for my participation, I nixed the idea.

Because the entire process was "off the books" (when I had to pay, I paid in cash), the insurance carrier that my employer provides and my employer's risk assessment group have no access to my records, and therefore have no authority to use my diagnosis as an excuse to terminate my employment.

I was seeing a psychotherapist for clinical depression and an anxiety disorder which I've had for probably about 40 years.
After the second appointment he said, "Have you ever heard of Asperger's?" and it just went on from there.

I am one of those who remained undiagnosed for most of her life, somehow slipping under the net and being diagnosed with various other things, some genuine, and some being misdiagnoses. Back in 1970s Britain, Asperger's was barely known among males, let alone females. at 8, a headmaster decided that I must be of sub average intelligence since I caused so many issues at school, and I was sent for an IQ test, which put me in the 140s, thus, not sub average.

At 13, I was diagnosed with clinical depression. The headmistress at my new school could not work out how, in spite of my high intelligence, I was failing to achieve as highly as expected at school. I developed anorexia at 14 (It is now believed that quite a high number of girls with anorexia, actually also fit the criteria for autism spectrum), was diagnosed with Bpd at 19(borderline personality), then in my early 30s, I was diagnosed with social anxiety and OCD... the psychologist who diagnosed those things decided I could not possibly have Asperger's based on the fact I had (shock) wanted friends when I was younger. He believed those with Asperger's had no desire for friendships.

Finally, this year, I got referred to a psychiatrist because, once again, I was struggling to cope with life and also, I had discovered there was now an team for diagnosing adults on the autistic spectrum. He agreed with me, when I said I suspected I had Asperger's and referred me to the team, who saw me earlier this month. I was clinically interviewed by the clinical lead, a psychiatrist with rather a lot of letters after his name(MB, BCh, FRCPsych, DCH - consultant Psychiatrist - Intellectual Disability(Forensic)), who has spoken at conferences on autism, and he had no doubt at all of my diagnosis. In fact, he halted the interview early because he already had all he needed, in terms of information.

Obviously, I have quite an extensive psychiatric history also, and had spoken at length to a colleague of his previous, which would have been taken into account as well. The main issue with diagnosing me, was to make sure there was not a differential diagnosis due to a history of child abuse. I was concerned about that as well, and it is one reason I had not looked into diagnosis for a few years. I was unsure of how much could be put down to the effects of my abuse.

As it is, he was sure, regardless, that I have Asperger's, and diagnosed me as such.

My mother's friend sent her a link about Asperger's, suggesting that I had it. My mother agreed and bribed me into seeing a psychologist without telling me why.

I was going to a local Mental Health Center when I was 63, for prescriptions for antidepressants, which worked pretty well for me. I'd heard of Asperger's, barely, but the specifics that I heard didn't seem to have any relationship to me. Of course, my daughter knows me better than anybody in the world, and when she heard a full descriptive list of characteristics in a college survey course, she said, "That's my mom!". Then she told the administration at the Center about it, but there wasn't anything they could do: nobody at their place knew much of anything about Asperger's, at least enough to do a real diagnosis, and none of the counselors there that I'd talked to picked up on it. Then they got a circular letter from a PhD Psychologist Autism specialist at the State Children's Hospital about forty miles away who was asking the local Centers for possible undiagnosed elderly Aspies: she wanted to write a paper about how we managed to survive undiagnosed for a lifetime, and my kid's speculation was fresh in their minds, so they sent us to her. I was willing to be interviewed for her paper, and my diagnosis came free from her with that, since of course for her paper she had to be sure that the people she was interviewing actually _were_ Aspies, since lifetime _undiagnosed_ Aspies were what she was wanting to write about. So she diagnosed me. I had already taken Early Retirement at 62, so I wasn't worried about ruining my career, which I didn't have anyway: you can't really call the kinds of paying jobs I'd always had a "career". It explained so many things that had always puzzled me about myself that I was delighted that my quirks and problems actually had a _reason_ other than Clinical Depression and High IQ. I started reading about it, in books and on the web, and it rapidly turned into a Special Interest (how could it NOT?! ) Even things that hadn't even puzzled me, just accepted as a given, like my monumental clumsiness, fitted right into the jigsaw under the name of dyspraxia.

I started failing socially and at school all around the time I was 13 so I guess they figured something was wrong, that let to eventually getting DX'd to receive services which didn't much either.

I went to see a psychiatrist about panic attacks and depression, and he diagnosed me.

I watch a TV show that features an AS character and have always related very strongly to them. One day (3 years ago), I decided to research AS to find out more about it. The more I read, the more I related to what I was reading. I thought I might probably had AS but doubted because I did not fit the stereotypical AS individual. So, I tried to forget about it but failed. I put it out of my mind for about two years until for some reason, it started tugging at me again. I ended up buying "The Complete Guide to Asperger's Syndrome" by Tony Atwood and doing a lot of research to figure out if I really did have it. Eventually I decided to go to a specialist and get a professional DX. I was diagnosed last June with Autism level 1 according to the DSM 5.

Through happenstance. I was working at a high school with at-risk students. Part of my duties would be to attend ARD meetings for the students I worked with. After one ARD, one of the diagnosticians took me aside and asked me if I'd ever been tested for a spectrum disorder. I hadn't. She said if I wanted to, she could arrange a meeting with the district tester. I stuck that under my hat; didn't think I needed to bother with it.

A few weeks after that, I started a new semester, and my professor--who works with spectrum disorders, it turns out--asks me in a visit if I'd ever been tested, as he saw a lot of characteristics in me that he saw in his teenage son, who was AS.

With that, I figured, okay, there might be a reason to pursue this. So I met with the district tester. We spent half a day doing tests, interviewing, and just talking. At the end, he said what he saw was consistent with AS, and recommended that I follow up with a specialist. I told my professor that, and he agreed. I told him I didn't feel a need; I was doing well with life. He said that I needed to be careful and not deceive myself, that there could come a time when my issues would overwhelm and cause problems.

..which it has, and tomorrow I have my first meeting with a specialist.

That's my story!

While hospitalized a few times as a teen due to depression/suicidal thoughts/psychosis.

My parents realized something wasn't right about my development as a baby. I was diagnosed autistic at around 2 years old.

My general practitioner realized something was very, very wrong and he didn't know how to help me, so he sent me for a psychiatric evaluation to rule out a laundry list of conditions. ADHD/AS/OCD/bi-polar/hyperactivity and I forget what else. I got dx'd with ASD, anxiety disorder, and severe OCD. Already had a diagnosis for ADHD.

Back in late 2012, I was unemployed. To fill the time, I decided to take an Intro to Psychology course offered online by Yale. During a lecture, the professor mentioned Autism and Aspergers. I started reading up on Aspergers and had one of those “Aha” moments. I seemed to have a number of symptoms mentioned. Then, things started to get quite confusing. As I began to learn about other psychological conditions as well (including personality disorders, anxiety disorders, etc. etc.). As I read more, I then started to document my own symptoms and challenges. This was an interesting period in my life, as I began to recall things from my childhood that I previously repressed (as I always considered my childhood to be an especially difficult period of time, as I had trouble “fitting in”).

I spent quite a bit of time talking to a member of my family (who is a Psychologist) about my suspicions of Aspergers. He was one of those “old school” Psychologists, trained many years ago (before Aspergers was a formal diagnosis). I believe he thought I was Schizoid with Depression (and possibly co morbid with General Anxiety Disorder and OCD). Anyhow, he suggested that I meet with a therapist he knew (to discuss my thoughts).

Prior to the appointment, I sent the therapist my documentation (which at the time was ~ 40 pages). The therapist was not an autism expert by any stretch of the imagination. We had an interesting discussion, mostly about anxiety. I specifically remember him asking me how I “felt” regarding some social situation that I described. After I responded, I remember him admonishing me with, “that’s a thought not a feeling”. He then spent several minutes describing the differences between thoughts and feeling. After the appointment, he recommended a thorough psychological evaluation, along with a psychiatric medication evaluation.

So, I proceeded along that path. Going in (to the psychological evaluation), I wasn’t certain what to expect. The day before the first appointment, I remember discussing the upcoming evaluation with the aforementioned family member. I had told him I was a bit nervous. That, for some reason, I really didn’t want to be diagnosed with a Personality Disorder. To this day, I am still not certain why.

I was formally diagnosed in April 2013. However, my first thought after being diagnosed was skepticism (generally I am a fairly skeptical person). My third WP post was, Just Diagnosed, yet somewhat Skeptical (Long) <click>.

Then, I spent the next year (well, actually a bit more than a year) wondering if the diagnosis was correct. I even started therapy to, among other things, get a second opinion. Ultimately, I ended up getting additional confirmation from two other sources (which I also have written about) and after an 18 month discovery process feel at peace with the diagnosis.

I've always kind of been weird to a lot of kids. I couldn't relate to the other kids, but I could deal with adults without too many problems. As you can imagine, I was picked on a lot. I also struggled in elementary school despite my high intelligence. I was taken to a doctor who diagnosed me with ADD, and I was given what was probably ephedra; I don't remember the name, but I do remember it was a gel cap and that when I popped it while trying to swallow it (I was twelve before I could swallow pills), it tasted like oregano.

I continued to struggle with things, and my parents were of little help. I was told I was "trying to impress people" if I asked a question that my dad found too high above my station as a child. I had suffered from insomnia from age 8, but it got more pronounced as I got older.

At 15, I was diagnosed with social and general anxiety disorders, seasonal affective disorder, insomnia, Tourette's syndrome, obsessive compulsive disorder, and clinical depression within a half an hour of meeting with a child psychiatrist; during the second half of my appointment, my mother and paternal grandmother was in there, and even when I was in there I didn't get the chance to talk very much. I was prescribed melatonin, fish oil, and wellbutrin. My parents didn't buy into the fish oil, but they did get the melatonin and the wellbutrin. Both made me so sick and my social worker was pure evil, telling me I could afford to lose weight when I told her the medicine made me not want to eat.

I avoided therapists and psychiatrists like the plague for years until my husband was diagnosed with bipolar 2 in March. In July I finally got up the nerve to call a psychiatrist and was diagnosed with Asperger's syndrome in August as well as social anxiety disorder. I was prescribed citalopram and have never felt better.