Adult diagnosis stories?

[Patsy]

For those who were diagnosed later in life, what are your stories? What made you or others suspect you were on the spectrum? What was the diagnosis process like if you received an official assessment?

 

[DaisyRose]

My evaluation process was very stressful. Going into my appointment, I was so nervous I felt like I was going to pass out. It was like I was living my entire life in just 4 hours. I had to do a lot of different types of tests, which was a lot to take in at the time.

I was afraid at first to make any mistakes, but later on decided to let it go. I felt like there was no right or wrong answers to each question. Even though I was afraid, I’m happy I went because I wanted to see if I could get any answers.

I was diagnosed with high functioning autism, which I wasn’t surprised because I did a lot of research before I scheduled an evaluation. I checked all the boxes when it came to each symptom of autism. This diagnosis has helped me understand myself better and how I can make positive improvements.

 

[Outdated]

I was born in the 60s. No one knew anything about autism back then and my parents refused to admit that they had a child with mental problems because of the stigma attached to that.

I'm not just a little bit aspergic, I'm ASD2. There was no hiding my differences so instead I played on them and discovered ways of turning them in to advantages. When I was 14 I told a doctor that I thought I was mad. He said:

"There's two types of madness, neurosis and psychosis. Neurotics build castles in the sky, psychotics live in them."

That was it, that was the extent of my knowledge about mental issues and probably more than most people knew. I just had to fumble my way through life and figure out things for myself. By the time I was in my 20s I figured out that I was probably autistic but I had no idea what that was or what it meant.

Sometimes I wondered if I was a psychopath, I'm high functioning and have all the same abilities, or perhaps a sociopath with a dash of Tourette's. My mouth often gets the better of me.

I didn't get a diagnosis until I was 55 years old, and I only did that because I knew it would get me a disability pension. I didn't really start to learn anything about autism until I joined this forum.

It has been a bit of a long journey but I am more content with who I am now than I ever have been.

 

[Uppity Creek]

My wife & I married over 20 years ago; there were some struggles, and by year 10 it reached the point that we both agreed to counseling. The first round was with a pastor who is also a child therapist. After a couple years my wife decided to discontinue as she felt they always took my side; not long afterwards she found a local Christian counselor and we started all over again. Perhaps 6 months into it, out of the blue, the gentleman said, "I believe you may be on the spectrum." I took this well. As long as I could remember, I was looking for a "missing piece" and this seemed to be it. Meanwhile, to call my wife "devastated" would be overstating things, but a formal diagnosis quickly went on my short list of things-to-do. Being someone who rarely makes any decision quickly, I put it off, and put it off, and...

My wife did a lot of legwork, eventually getting me an appointment with a therapist who specializes in those on the spectrum. When filling out paperwork ahead of our first meeting, it stated the process could take 9 months worth of sessions. I made it clear, in writing and in person, that I had no interest in such a drawn-out affair. The first meeting was more than cordial, however. I was made to feel instantly comfortable. My therapist (counselor? Same difference?) told me, I believe within that first session, that any further testing would be superfluous and that I was on the spectrum. While I had gone into this with no desire to start down a path of regular meetings...I now very much look forward to that hour, and wish they were longer. On top of that, I started meeting regularly with that pastor from those years ago. He, too, has experience with Autism; I find it helpful to get 2 perspectives. (One secular, one Christian; one male, one female.) I began this part of my journey in the fall. Just over a week ago I started watching YouTube videos and reading various articles. In the same way that I will obsess at researching which toothbrush to buy, or how to rebuild the carburetor on my old car, I am now researching about that missing piece that I've finally found.

Will I ever take a "formal" test? I'm really not concerned about it right now. I'm confident of my place now.

 

[Mr. Stevens]

When I first suspected I was Autistic, I'd been working in disability services for about 2-3 years. I was a caseworker for people with intellectual and developmental disabilities. I read that Gary Numan (the guy who did the song "Cars") had Asperger's and was curious what his life was like. I also wanted to learn more about ASD since I helped serve such individuals, but never received much training on working with them. Pretty soon I realized all this information described me.

I had a few humiliating encounters with therapists as I started to seek support and potentially a diagnosis. About 7 years later (within this past year), I finally got diagnosed. It was affordable, easy, and through a reputable place. They listened instead of condescending or belittling me. The self-awareness has helped me personally, and also in my job at an adult day program for disabled people. We share many of the same issues and get along really well.

 

[Shevek]

I'd been going to meetings of "Adult Children from Dysfunctional Families," etc. for 15 years when my sister got distressed that mother was dying without ever having said "I love you." I did another search on her symptoms, and happened across a list of 13 characteristics of Aspies. Nobody had ever suggested anything inherited at all, but suddenly both her life and mine made sense.

 

[Patsy]

My evaluation process was very stressful. Going into my appointment, I was so nervous I felt like I was going to pass out. It was like I was living my entire life in just 4 hours. I had to do a lot of different types of tests, which was a lot to take in at the time.

I was afraid at first to make any mistakes, but later on decided to let it go. I felt like there was no right or wrong answers to each question. Even though I was afraid, I’m happy I went because I wanted to see if I could get any answers.

I was diagnosed with high functioning autism, which I wasn’t surprised because I did a lot of research before I scheduled an evaluation. I checked all the boxes when it came to each symptom of autism. This diagnosis has helped me understand myself better and how I can make positive improvements.

I'm glad it was helpful for you in making positive changes! How long was the process, in your case?

 

[Patsy]

I was born in the 60s. No one knew anything about autism back then and my parents refused to admit that they had a child with mental problems because of the stigma attached to that.

I'm not just a little bit aspergic, I'm ASD2. There was no hiding my differences so instead I played on them and discovered ways of turning them in to advantages. When I was 14 I told a doctor that I thought I was mad. He said:

"There's two types of madness, neurosis and psychosis. Neurotics build castles in the sky, psychotics live in them."

That was it, that was the extent of my knowledge about mental issues and probably more than most people knew. I just had to fumble my way through life and figure out things for myself. By the time I was in my 20s I figured out that I was probably autistic but I had no idea what that was or what it meant.

Sometimes I wondered if I was a psychopath, I'm high functioning and have all the same abilities, or perhaps a sociopath with a dash of Tourette's. My mouth often gets the better of me.

I didn't get a diagnosis until I was 55 years old, and I only did that because I knew it would get me a disability pension. I didn't really start to learn anything about autism until I joined this forum.

It has been a bit of a long journey but I am more content with who I am now than I ever have been.

Were you diagnosed with Tourette's as well or was that just something you've suspected because of tics? I've always thought I have Tourette's too and still think I might, because I'm not clear if tics can be part of Autism itself or if its because TS is a comorbid.

 

[Patsy]

My wife & I married over 20 years ago; there were some struggles, and by year 10 it reached the point that we both agreed to counseling. The first round was with a pastor who is also a child therapist. After a couple years my wife decided to discontinue as she felt they always took my side; not long afterwards she found a local Christian counselor and we started all over again. Perhaps 6 months into it, out of the blue, the gentleman said, "I believe you may be on the spectrum." I took this well. As long as I could remember, I was looking for a "missing piece" and this seemed to be it. Meanwhile, to call my wife "devastated" would be overstating things, but a formal diagnosis quickly went on my short list of things-to-do. Being someone who rarely makes any decision quickly, I put it off, and put it off, and...

My wife did a lot of legwork, eventually getting me an appointment with a therapist who specializes in those on the spectrum. When filling out paperwork ahead of our first meeting, it stated the process could take 9 months worth of sessions. I made it clear, in writing and in person, that I had no interest in such a drawn-out affair. The first meeting was more than cordial, however. I was made to feel instantly comfortable. My therapist (counselor? Same difference?) told me, I believe within that first session, that any further testing would be superfluous and that I was on the spectrum. While I had gone into this with no desire to start down a path of regular meetings...I now very much look forward to that hour, and wish they were longer. On top of that, I started meeting regularly with that pastor from those years ago. He, too, has experience with Autism; I find it helpful to get 2 perspectives. (One secular, one Christian; one male, one female.) I began this part of my journey in the fall. Just over a week ago I started watching YouTube videos and reading various articles. In the same way that I will obsess at researching which toothbrush to buy, or how to rebuild the carburetor on my old car, I am now researching about that missing piece that I've finally found.

Will I ever take a "formal" test? I'm really not concerned about it right now. I'm confident of my place now.

In my case it was my ex-wife who realized I was probably on the spectrum. Unfortunately, she didn't stick around to find out. I feel pretty confident in my place, too, and am still debating whether an actual diagnosis is worth it or if it could be used against me by employers in the future. Thanks for your response.

 

[Patsy]

I'd been going to meetings of "Adult Children from Dysfunctional Families," etc. for 15 years when my sister got distressed that mother was dying without ever having said "I love you." I did another search on her symptoms, and happened across a list of 13 characteristics of Aspies. Nobody had ever suggested anything inherited at all, but suddenly both her life and mine made sense.

My aunt discovered she might be on the spectrum years after my cousin was diagnosed with Aspergers. It's interesting how these traits disperse in families.

 

[Patsy]

When I first suspected I was Autistic, I'd been working in disability services for about 2-3 years. I was a caseworker for people with intellectual and developmental disabilities. I read that Gary Numan (the guy who did the song "Cars") had Asperger's and was curious what his life was like. I also wanted to learn more about ASD since I helped serve such individuals, but never received much training on working with them. Pretty soon I realized all this information described me.

I had a few humiliating encounters with therapists as I started to seek support and potentially a diagnosis. About 7 years later (within this past year), I finally got diagnosed. It was affordable, easy, and through a reputable place. They listened instead of condescending or belittling me. The self-awareness has helped me personally, and also in my job at an adult day program for disabled people. We share many of the same issues and get along really well.

I'm glad the diagnosis helped you and that the process was comfortable. For me, just realizing the potential that I could be on the spectrum allows me to give myself more grace when I do odd things at work or at social events.

 

[Outdated]

Were you diagnosed with Tourette's as well or was that just something you've suspected because of tics?

Not tics, but because of the way I tend to blurt out the truth if people ask me something I wasn't expecting. It's amazing how often people don't really want to hear the truth.

 

[Patsy]

Not tics, but because of the way I tend to blurt out the truth if people ask me something I wasn't expecting. It's amazing how often people don't really want to hear the truth.

That is very true!

 

[Duncan74]

For me it was just your average day. Usual stress rush in the morning at work, then at lunch was having a quick browse of Instagram (don't use it that much, follow a few friends and a couple of other people, mainly checking what was happening at a race that a few were at), and I saw this post in my feed which I suspect was the most impactful thing ever to happen to me.

View this content on Instagram

View this content on Instagram

That 2 minutes as I read this and suddenly 48 years of confusion, challenge and being on the outside looking at life through a semi frosted window came into lazer sharp focus.

I talked to a few people, a good friend, an old boss who said he and his HR manager wife suspected it of me, my counsellor who said the same, and then the screening tests have all shown strong indications. With so many previous psychometric tests that never quite made full sense it's like going back how it all now fits. Also explains some physical things too. Fair to say my physio is about as relieved as me as this now fits some of the odd muscle/nerve/pain path that has been a real challenge to her over the 3 years we've been working together.

I had an initial discussion with my HR manager at work last week, and she was awesome. Had some good, knowledge of Aspergers/Autism, and the only real message was about how the company could take over the payment for the counselling I'd been doing privately, noting that the work we were doing before was all just the same as going forward.

 

[Uppity Creek]

The company I work for takes what I'd call a modern stance on mental health issues and supporting employees in general. I had a brief discussion about my diagnosis with my supervisor, a great guy who just brushed it off with that response, "I think we're all a little bit Aspergers." Well, not the most informed response but not unusual. The ideal, these days, is that an employer would use an employee on the spectrum to their advantage and put them in a position where their unique skillset is a boon.

 

[Human Avatar]

@Patsy

Dan Akroyd as a child was diagnosed with Tourettes, It was later discovered he was autistic and was diagnosed as such .

What looked Tourettes was actually him stimming .

 

[Ella Spell]

Hi @Patsy and welcome.

I was shopping for bedding with my daughter who was ... (?) ... about 20 years old. I had a panic attack because of the bright lighting and annoying music in the store, but also because I couldn't find any bedding textures I could tolerate touching, and all the displays were disorganized. I was hot, tired, and upset. I'd been shopping for new bedding for years at that point but kept getting overwhelmed and leaving empty-handed. This was about six years ago, by the way, and I still haven't found anything I like ... Whoops. Please don't look at my bed.

When I had my panic attack I had to sit on the floor of the store, which is something I do regularly if I melt down in public. I was embarrassed and could tell people were staring at me. My daughter sat down beside me and said "You know you're autistic, right?" Apparently she'd known this for years, based on my behaviours. She took for granted that I knew, but thought I preferred not to talk about it.

I don't actually remember the end of that conversation or what I said next, beyond leaving the store. I knew the word felt right though. It felt like magic, like a glove that fit me perfectly even though I'd never seen it before. I just knew that was my word.

One day I started googling to see if I was the only person on Earth who hated Daylight Savings Time because of extreme light sensitivity. The only hit I found was from an Autism support group, saying that light sensitivity and other sensory processing disorders were part of Autism. Most of them hated Daylight Savings and rejoiced in the autumn when DST ends, just like I do. At that point I knew I'd found my home. With more reflection I realised many people in my family tree have also shown signs of Autism. It made my whole life make sense. I could remember back to being three years old and having the same self-conscious awareness that I was made "differently" somehow, on the inside. In my little mind God had built me on an assembly line and forgot to add something, or else he gave me something that no one else had. I couldn't articulate this understanding until I discovered ASD.

Diagnosis:
I booked privately through my University Neuropsych department without going to my GP for a referral. Referrals weren't needed and I knew it would just add an unnecessary step. I waited about five months for the appointment. In the interim I was emailed a lengthy developmental history questionnaire. I'm very thorough so I took this on as my special interest and wrote a 188 page book, cross-referenced and indexed to answer all the questions with anecdotal evidence and examples. I added photos for each stage of my development, home movie attachments from 16 mm filmstrips in the 1970s, all my school reports from Kindergarten upward, doctor's notes, and even employee evaluations in an Appendix at the end. I had it professionally bound and sent to her office by courier, with a note saying that I'd pay her extra for any additional time spent reading (lol).

The appointment was 12 hours long, all on one day. I sat on the floor in her office because that's what I do (I hate chairs). I stimmed openly, and didn't make eye contact because that's the way I am normally and I didn't feel a need to fake it. There were a lot of standardised tests and very little of it was subjective questioning where I might be able to fake the answers. In fact I had no idea what the answers were supposed to be. I hadn't even heard of things like the ADOS at that point.

I had an hour lunch break in the middle where she invited me to go get a sandwich at a restaurant, but I was so burnt out I sat in a little closet area by myself in the dark, and stimmed. I hadn't taken a lunch or anything because I was too overwhelmed with executive function but she gave me some water and a snack. I think maybe grapes?

At the end she said there were more online questionnaires for me to do at home with a secure encryption code thing, and some for my daughter as well. She sent those to a third party autism data place in USA somewhere to be matched with the scores she had given me herself. She said she would email me a draft copy of the final report and I could edit any factual errors, and then we'd meet again a month later to sign the final report and she'd give me a paper copy. I didn't know if I was allowed to ask what she had diagnosed at that point, but I did anyway. I asked if there was a possibility I had "Aspergers", even though I knew that wasn't a term in the DSM5. She said quite openly that I was moderate (Level 2) Autism Spectrum Disorder, and not HFA or Aspergers. She said I need significant support, and in some areas of the test I was ranked as needing "very significant support" or being "at risk". At risk of what, I've never asked.

I had some of the lowest scores she'd ever seen in some areas, like Reading the Mind in the Eyes, Social Functioning, and Adaptive Functioning. I was kind of shocked but intrigued and couldn't wait to see my report. The report itself was 30 pages and full of graphs and charts with test scores and standard deviations. It's very professional and factual. In addition to ASD I was (re) diagnosed with CPTSD, GAD, Panic Disorder, MDD, Selective Mutism, Agorophobia, Alexithymia, and Sensory Processing Disorder as co-morbids. I have an auditory-visual learning disorder too (5th percentile for non-verbal learning performance.) I only learn by reading, which is something I never knew. I'm also completely face blind.

At the final meeting I gave her consent to forward copies to my other doctors including my GP, my psychologist, and my then-Psychiatrist. I was already on Long Term Disability from work at that time so I never had to submit the papers to an employer. Since then my daughter was also diagnosed on the spectrum as "High Functioning" or Level 1 ASD.

After my assessment I started working with an Occupational Therapist for Interoception, Alexithymia, EF, and Sensory Processing Disorder, a Speech-Language Pathologist for Mutism and auditory processing, a new psychologist for ASD issues, and I was referred for ADHD testing too. My ADHD testing was 20 hours, and done by a neuropsychiatrist who works in conjunction with the ASD office. I was diagnosed with very severe combined-type ADHD. I started meds and worked with the Neuropsychiatrist for about a year. They sent me to yet another psychologist who specialised in ADHD and ASD combined.

I must have lived to tell the tale, because here I am today.
No one can say I haven't worked my butt off to get help, or to help others.

I've made it my life's work to help others identify and understand their ASD, ADHD, and trauma.

Welcome again.

 

[Ken]

I don’t know if you are referring to official diagnosis or if self-diagnosis is also valid for this thread. In any event, I consider myself to be officially self-diagnosed.

For my whole life from my earliest years of memory to the present, I knew something was “wrong” with me. I just didn’t fit. All the years, until he died, my father’s perpetual exclamation to me was, “When are you ever going to wake up and start acting like a normal human being”. This was traumatizing to me because I thought I was acting like a normal human being and if I wasn’t, then I had no idea how to. For most of my life, I felt like I was living in the Twilight Zone, only much scarier.

I guess my father was right though, because throughout my life I have been given that same message by lots of other people – teachers, counselors, managers, bosses, “friends”, relatives, etc. This has been profoundly depressing. I have ridden the edge of suicide all my life. Quite a surprise that I’m still here.

School was a perpetual nightmare. I was diagnosed as retarded. Autism was not known then, or at least there. My social anxiety was crippling. As a result, my school performance was terrible. Being taught is a social thing. Eventually, I managed to graduate. Eventually, I realized that I can lean, I just can’t be taught.

I didn’t learn what was “wrong” with me until 2018 at the age of 66. The TV was on and I heard a young girl giving a speech about the climate. I thought she was doing a good job speaking. Then what really caught my interest was when she announced that she was autistic. By that time in my life, I had heard about autism. I had even seen the movie, “Rain Man”. But, something had to be a miss. The young girl giving the speech was nothing like “Rain Man”. There had to be a mistake, because I couldn’t see how anyone with autism could give such a speech so articulately. I found that so perplexing that I started researching autism. The more I learned the more obsessed I became. Eventually, after a few months of researching, in 2019, I realized that I have been studying me. It was a profound revelation. I am autistic! That explains all the traumas, PTSD’s and anxieties of my life. It explains why I could never, “wake up and act like a normal human being”. With this revelation, I realized that is OK, because I am not a normal human being, and now – I’m OK with that.

What I realize is that, just like everything else in life, there are pros and cons to being autistic. Yes, my autism has been a living nightmare. But, it has also elevated my life to levels I don’t believe could have ever happened if I was not autistic.

My autism made me a recluse. That was both a bad thing and a good thing. It was bad socially, but a good thing career wise.
My autism also also gave me a lifelong obsessive special interest. I had a fascination with all things electronic as far back as I can remember and that fascination has never diminished. My career excelled when my autistic traits and career traits aligned. Upon getting a job that satisfied my electronics design obsession plus a private office and lab to work in solitude; I flourished.

Now, after all the nightmare’s of my life added to my very satisfying career and now understanding the mechanisms of my horror stories; I feel much better about my life.