Adult ASD diagnoses

Many of us weren't identified or self-identified on the spectrum until our adult years.

Use this thread to post articles or thoughts about your journey.

https://www.publicsource.org/autism-spectrum-disorder-older-women/?fbclid=IwAR3-SoZIVUCyvQb5r6HZ8jWblOM3tc_0SFDK2GlJ_8_nRl-_jN2KmkkDT6k

Comments

  • AmityAmity Administrator, Citizen

    There are so many of us, with all of our potential being used to simply survive.

    Its stories like Joey's and the awareness raised about the issues with adult diagnosis on autism sites that led me to finding a specialist in womens autism.

    The thought of having the courage to seek a diagnosis being met with, ignorance in the place of expertise was too high risk for me.

    I had never been so certain of anything in my life, I knew I was autistic, the process of self diagnosis was a life changing experience. I would advise any adult thinking about seeking a diagnosis to wait until you find an expert in adult presentation and even more so if you are female.

  • Statest16Statest16 Citizen, Mentor

    I was formally diagnosed by a PHD at 19,maybe that's an adult.

    But the hints were dropped much sooner though but there was no autism diagnosis available at that time unless you were mute or at least had a massive speech delay.

    At 14 I was taken out of school in the middle of the school day by a social worker to see the movie Rainman,this action did say something but the SW wasn't PHD and could not DX,plus at this time there wasn't really a DX available.

    A year later my parents were told something about PDD-NOS but I was never informed and I'm not sure at that time PDD-NOS was anything formal.

    Then in 1994 with the DSM IV came Aspergers so I suppose I was diagnosed in adulthood but had it been available,likely more around 13 or 14

  • Yep, I didn't get my formal diagnosis until 2014 when I was almost 30.

    That being said, my older half sister told me awhile back that she suspected it when I was little after she saw a special on Temple Grandin and pondered my various 'quirks' (lack of eye contact, repetitive behavior, etc.), but my parents didn't think I was because I had a big vocabulary. This was back in the 1980s when the idea of autism was male and nonverbal, so I can't really blame my parents for being unaware, or my sister for dropping the issue early; hardly anyone was aware of female autism/Asperger Syndrome then. They thought I'd do fine because I could communicate well and did fine with all my other learning milestones; my folks even thought early that I was gifted, and they inflated my ego with plenty of self-esteem over what I achieved (I was a very indulged child and, once upon a time because of all that, I was rather confident, unlike I am now as an adult). Now that I'm older and can look back with greater insight and understanding, what I was actually exhibiting wasn't necessarily genius like my parents thought, but was hyperlexia and a large memory for things/patterns I heard (conversations, music, etc.). Having a good vocabulary, good word decoding skills, and an excellent memory have always helped me do well in school, academia, tests, etc. But that doesn't make for genius per se.

    Anyway, even as I progressed through childhood and adolescence, I didn't have any concept of being autistic; as a teenager, I was diagnosed with mild OCD instead. It wasn't until I hit my adult years when the lack of social skills and coping mechanisms affected my levels of friendships and employment that I began to look into alternative explanations. I started to think it was introversion or a rare Myers-Briggs type, got into Jon Niednagels 'Brain Types' system, and considered that maybe introversion explained it. But that wasn't it, either, and trying to explain Niednagel's system to people was generally a disaster as few are aware of it and even fewer buy much into it.

    To end a long story, I finally got the diagnosis, moderate autism (not even mild). I'd write more but husband just appeared and he is just adorable, so that's all I'll write lol.

  • i was diagnosed with Asperger's in May 2019 at the age of 62. That only happened because I moved to be near my stepdaughter and came under a new pdoc etc. The previous trust had paid little attention to my mentions of autism

  • I was “lucky” to have been diagnosed back in the mid-60s, when I was about 3.

    I had blatant, Kanner’s-type symptoms.

  • For me going to boarding school 5 days after my 8th birthday was a watershed moment.That's when it became obvious that I was not like the other boys and girls. Having said that even if the autism dx had been broadened by then I'm not sure my parents would have pursued the matter.

  • @firemonkey said:
    i was diagnosed with Asperger's in May 2019 at the age of 62. That only happened because I moved to be near my stepdaughter and came under a new pdoc etc. The previous trust had paid little attention to my mentions of autism

    I was a month shy of 50.

    I think you and I experienced a lot of the same neglect and misunderstanding until we were diagnosed.

  • @Isabella said:'

    @firemonkey said:
    i was diagnosed with Asperger's in May 2019 at the age of 62. That only happened because I moved to be near my stepdaughter and came under a new pdoc etc. The previous trust had paid little attention to my mentions of autism

    I was a month shy of 50.

    I think you and I experienced a lot of the same neglect and misunderstanding until we were diagnosed.

    I was regarded as an awkward,demanding, and troublesome patient. The reason for that-asking for more help and support.
    The notes that i got a while later described my illness as 'Machiavellian in its complexity'. Another comment was that I was a 'very dependent narcissist' . I had 2 psychologists/therapists who instead of helping me cope better with things adopted a 'If you want to be a good person...' approach.

    That lead to my dx being switched to personality disorder from schizoaffective by a pdoc who's into this kind of crap -https://amazon.com/Afterlife-psychiatrist-exploring-beyond-death-ebook/dp/B00X5T48NS

    I've since learnt that it's quite common for those with undiagnosed ASD ,and with severe mental illness, to be treated in a less than helpful and supportive manner.

  • Very insulting. Paradoxically, they thought you had great intelligence, though.

  • Being highly intelligent isn't always the plus point that people tend to think is. Especially for those of us who would've been 2e if that had been used when we were children/teenagers. Without knowledge of 2e/spiky profiles you get seen as lazy& passive aggressive etc for failing to do as well as expected at something. Basically it's seen as displays of bad character rather than there might be more going on than that.

    What you don't get is the help and support to function to the best of your abilities.

  • I did get what you mean—always have

    How’s the stepdaughter doing?

  • It was a general comment about high intelligence rather than specifically aimed at you or anyone else.

    My stepdaughter is fine at the moment, but things are manic work wise for her. She's a branch manager of a care agency, but has been doing hands on work with clients because of staff isolating due to possible COVID.

  • I’m glad you have her as your buddy and advocate.

  • @firemonkey said:
    It was a general comment about high intelligence rather than specifically aimed at you or anyone else.

    My stepdaughter is fine at the moment, but things are manic work wise for her. She's a branch manager of a care agency, but has been doing hands on work with clients because of staff isolating due to possible COVID.

    I'm one of those who was always praised for alleged high intelligence. I think it's usually because of my language skills; my overall IQ is just 115 per the WAIS-IV I took when I was getting my diagnosis, but I was over 130 in the verbal comprehension part, which is why I was able to get an English degree so easily. I always had good vocabulary, read a lot, had a good memory, could take written tests well. Book smarts are always assumed to translate into every other life area for some reason, so it always puzzled people why I never achieved more in employment. It wasn't due to gender discrimination or anything, it was due to my inability to handle stress, change, unexpected things, most human beings.

  • I have a very similar adult profile. 115 full-scale. 120 verbal and 104 Performance on the WAIS.

    I once scored 131. 150 verbal and 90 Performance. I was 15 years old.

  • @kraftiekortie said:
    I have a very similar adult profile. 115 full-scale. 120 verbal and 104 Performance on the WAIS.

    I once scored 131. 150 verbal and 90 Performance. I was 15 years old.

    Nice! My profile was 134 verbal comprehension, 98 perceptual reasoning (never was good at visual spatial mechanical engineering type stuff), 105 working memory, 114 processing speed, 115 overall.

    My mom convinced me and my late older brother that we had 219 and 217 IQs, respectively. I later read her diary entries from the 1980s, and found she invented her own algorithms to compute such silliness. But I grew up thinking my IQ was literally that high, and it gave me an ego when younger. I'm glad to know the truth now.

  • My full scale IQ was 132 on the WAIS-IV, though I feel that years of stress and having to deal with my various secondary diagnoses has probably brought it down somewhat since then. Frankly, I'd be afraid to take another IQ test, as I feel like it ought to be in double digits, my head is always so clouded.

    My test consisted of four separate components: verbal reasoning, processing speed, working memory and perceptual reasoning. I was 138 in verbal reasoning, 115 in working memory and the other two were both in the 120s.

  • Prometheus81Prometheus81 Citizen
    edited November 2020

    @ting1984 said:

    @firemonkey said:
    It was a general comment about high intelligence rather than specifically aimed at you or anyone else.

    My stepdaughter is fine at the moment, but things are manic work wise for her. She's a branch manager of a care agency, but has been doing hands on work with clients because of staff isolating due to possible COVID.

    I'm one of those who was always praised for alleged high intelligence. I think it's usually because of my language skills; my overall IQ is just 115 per the WAIS-IV I took when I was getting my diagnosis, but I was over 130 in the verbal comprehension part, which is why I was able to get an English degree so easily. I always had good vocabulary, read a lot, had a good memory, could take written tests well. Book smarts are always assumed to translate into every other life area for some reason, so it always puzzled people why I never achieved more in employment. It wasn't due to gender discrimination or anything, it was due to my inability to handle stress, change, unexpected things, most human beings.

    I should point out that 115 is not a low IQ. 100 is the mean and median score, which means that roughly half the population has an IQ in double digits and the other half triple. Anything in triple digits, other than 100 itself, is technically above average. 115 would put you in the top 15% or so.

  • Verbal via tests created by an educational consultant .

    The 154-159 is asecond attempt.

  • IsabellaIsabella Citizen
    edited November 2020

    @firemonkey said:

    I was regarded as an awkward,demanding, and troublesome patient. The reason for that-asking for more help and support.
    The notes that i got a while later described my illness as 'Machiavellian in its complexity'. Another comment was that I was a 'very dependent narcissist' . I had 2 psychologists/therapists who instead of helping me cope better with things adopted a 'If you want to be a good person...' approach.

    That lead to my dx being switched to personality disorder from schizoaffective by a pdoc who's into this kind of crap -https://amazon.com/Afterlife-psychiatrist-exploring-beyond-death-ebook/dp/B00X5T48NS

    I've since learnt that it's quite common for those with undiagnosed ASD ,and with severe mental illness, to be treated in a less than helpful and supportive manner.

    People of our generation who aren't identified until adulthood report this problem frequently. It's a systemic failure of the health-care system, especially when patients are sent to psychiatrists rather than neuropsychologists for diagnosis. As you know Autism is not a mental illness or mental health disorder but years of neglect and abuse by uninformed psychiatry or even psychology professionals can cause such trauma that we develop comorbid conditions related to anxiety, depression, self-loathing, and fear of the diagnostic establishment at large.

    Add the misunderstanding of our families, teachers, and schoolmates, and the damage is oftentimes intractable.

    I had similar experiences to yours, from doctors who suggested multiple explanations for my developmental difficulties, but never landed on Autism. I had to refer myself for assessment and initiate the process on my own after realising I was on the spectrum. I was identified as Level 2 by a neuropsychologist specialising in adult Autism but like @Amity said, it's very daunting to choose a diagnostician because we all worry that we'll be misdiagnosed or invalidated in the process.

    I'm very glad you got your identification so you can start to make sense of it all. I remember when you awaited your assessment, and even during the process you were quite anxious that you would be given the wrong diagnosis.

    Thanks for sharing, @firemonkey.

  • https://www.nytimes.com/2020/12/05/opinion/autism-adult-diagnosis-women.html?fbclid=IwAR2pTBLhmxTWu3r1WbPQGgVP59D2i-XaqL9Bpm-WMBUb4TVuy7jubaRTUEQ

    Here's another article about late ASD diagnoses.

    Source: New York Times, "I Didn't Know I Was Autistic Until I Was 27" , Marianne Eloise
    5 December 2020

    I like the last two paragraphs in particular.

  • ^ I concur. Those last two paragraphs were very moving and I identify with them completely in my own life.

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