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Featured Adults diagnosed w/ autism over 50 believed they were bad people

Discussion in 'Autism Spectrum News, Events and Research' started by Isadoorian, Nov 13, 2019.

  1. Isadoorian

    Isadoorian Well Known Chat Member, Welcomer of Newcomers V.I.P Member

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    Abstract: https://www.tandfonline.com/doi/full/10.1080/21642850.2019.1684920

    Article that linked to abstract: Autistic adults thought they were 'bad people'
    ---
    Transcript of aforementioned Article:

    "Many over-50s who were diagnosed with autism late in life had grown up believing they were bad people, according to a new study published in the journal Health Psychology and Behavioural Medicine.

    Researchers from Anglia Ruskin University interviewed nine adults about their experiences of being diagnosed with autism in their 50s. The participants were aged between 52 and 54.

    As children, some participants recounted having no friends and being isolated from others, and as adults they could not understand why people treated them differently. Several had been treated for anxiety and depression.

    Participants also highlighted the lack of support available to adults with a new diagnosis.

    It is thought to be the first study of its kind that examines the phenomenon of receiving a diagnosis exclusively in middle age.

    Dr Steven Stagg, Senior Lecturer in Psychology at Anglia Ruskin University (ARU) and lead author of the study, said: "One aspect of the research I found heart-wrenching was that the participants had grown up believing they were bad people. They referred to themselves as 'alien' and 'non human'.

    "The research also suggests that receiving a diagnosis in middle age can be positive. The participants often described it as a eureka moment that brought relief into their lives. It allowed them to understand why others had reacted negatively towards them.

    "Clinicians and health workers need to be aware of the possible signs of autism. Often people are diagnosed with depression, anxiety or other mental health conditions and the autism is missed. More work also needs to be done to support older people after they receive a diagnosis."
    "
     
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  2. Isadoorian

    Isadoorian Well Known Chat Member, Welcomer of Newcomers V.I.P Member

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    Been meaning to post this since I saw it the other day; interesting yet a bit sad at the same time
     
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  3. Wolf Prince

    Wolf Prince My future job title.

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    Hopeful too. Someones paying attention.
     
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  4. GadAbout

    GadAbout Well-Known Member

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    Well, a study with N=9 is nothing I would even bother posting. Also, it was published in

    Health Psychology and Behavioral Medicine
    An Open Access Journal

    does "Open Access" mean anybody can publish anything in it, without peer review?

    Not putting down the article or this thread, just suggesting being cautious about studies we find.
     
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  5. Thinx

    Thinx Well-Known Member V.I.P Member

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    It's a qualitative study, looking at some depth into how people in the category are experiencing things. As such, 9 is quite a large number of people to have consulted, and the results give indications of what people in the category may think and feel. It is not intended to stand alone, and should be read with awareness that the range of views may not be typical, but does raise some questions and ideas for further research and inquiry.
     
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  6. Autistamatic

    Autistamatic He's just this guy, you know? V.I.P Member

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  7. SusanLR

    SusanLR Well-Known Member

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    I was diagnosed at age 58.
    It was a positive to learn of this as the reason why my life was so different.
    But, I was never one to think of myself as a bad person or that it was my fault.
    Low self esteem was never a problem. Interesting.
     
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  8. Trophonius

    Trophonius Active Member

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    Open access means anyone can read and download the paper, without paying or using an university network.

    It was peer reviewed: "Received 29 Mar 2019, Accepted 12 Oct 2019, Published online: 06 Nov 2019"

    And they address the problem you mention in the paper: "The current study is based on a relatively small sample size, and we acknowledge this creates issues around saturation of insight. "

    https://www.tandfonline.com/doi/full/10.1080/21642850.2019.1684920
     
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  9. Bolletje

    Bolletje Potato chip wizard V.I.P Member

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    I think this is true for most of the current elder population with mental illness as well.
    I remember doing an internship in a facility for the elderly with psychiatric disorders. A lot of them told stories of how they spent their life in fenced off facilities with the local youth gawking at them and throwing stones at them through the fence. It broke my heart.
    The fences of that facility have been long since removed, now it’s a facility in a beautiful park with a petting zoo and on-site grocery stores. It’s more of a tiny village for people with psychiatric disorders and brain damage, but the area is open to the public and the patients are no longer kept prisoner.
    My favorite patient was this sweet old lady with rosy cheeks who would camp out by the coffee machine to intercept me for a daily chat, which I gladly indulged. I often took her for walks in the park (well, I walked, she was in a wheelchair) so we could talk about her life. She told me she was discarded by her family as a teen because she was different and ‘difficult’. She was well into her sixties before she was diagnosed with bipolar disorder and treated accordingly. Up to that point she’d just been sedated and kept in a closed fenced off facility. She felt like a zoo animal on exhibit for the locals. But because she wasn’t diagnosed and her family discarded her, she also felt like it was her fault, like she’d done something wrong or maybe she was faulty somehow. That internship is almost ten years ago, but I still remember her story vividly. So much damage was done to her generation..
     
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  10. clg114

    clg114 Still crazy, after all these years. Staff Member V.I.P Member

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    I agree 100%. I had never heard of Asperger's Syndrome until I was 60. Then I researched it to find out everything that I could about AS (sound familiar?). When I was 62 I got diagnosed. To me it was revelation because it answered so many questions about myself. I have always known that I was different, I just did not know how or why. So this was very positive.

    I do not remember ever thinking of myself as a bad person or feeling guilty about being different from everyone else. I have always been very self confident because of my ability to understand concepts that have my interest.
     
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  11. Nervous Rex

    Nervous Rex High-functioning autistic V.I.P Member

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    OhMyGoshAbsolutelyYes!

    I thought I was a bad kid growing up. When I would break down and the teacher sent me out of class, I felt like I was being banished for my behavior. Only recently have I come to understand that the teacher was separating me from the situation so I could calm down.

    Even at work as an adult, I wondered why I can't just knuckle down and do what I'm told, why I can't focus if the task isn't "interesting enough". I wondered, "Am I spoiled? Am I being a prima donna?"

    Now, I finally understand that it's not that I'm "bad" or "spoiled" - it's that my brain doesn't work the way everyone else's does. I need to find ways to make it work and those ways aren't the ways that work for everyone else.
     
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  12. Nervous Rex

    Nervous Rex High-functioning autistic V.I.P Member

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    Not one bit sad for me. It explains so much. It's vindicating and it's a burden lifted.

    Thank you for posting this.
     
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  13. GrownupGirl

    GrownupGirl Tempermental Artist

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    I was a good kid, a semi-decent teenager, and now I'm a really bad adult.:smilingimp:
     
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  14. Pats

    Pats Well-Known Member V.I.P Member

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    I have to go to an appointment, but I definitely plan to read this article - and thanks for posting it. Without reading the article yet - and just your thread title, I'm very interested because I was diagnosed at 59 and I've always felt like a 'bad' person for some reason and always afraid of 'being caught' - I guess being caught being that bad person. Now I'm anxious to get back home so I can read this.
     
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  15. Nervous Rex

    Nervous Rex High-functioning autistic V.I.P Member

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    Open access - Wikipedia

    It looks like "open access" doesn't mean that anyone can publish in it (like Wikipedia). It means that anyone can read it without the paywall or exorbitant subscription fees that most academic journals charge. It is still peer-reviewed.

    Yes, n=9 isn't a lot, but it's enough to indicate that (as they said) more research is needed in this area.
     
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  16. BlueSky Aozora

    BlueSky Aozora Well-Known Member

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    Like somebody has already stated, Open Access in scientific journal world means, it's open for public to VIEW. Of course they've gone through peer reviews. It does NOT mean anybody can publish. The researchers want the people in the world to get access to the research, so they pay the extra money for it to be Open Access. Otherwise, we as the readers need to buy/subscribe to read the content.
     
  17. BlueSky Aozora

    BlueSky Aozora Well-Known Member

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    Many of support for autism is always for children only, like in my country. It's really really hard to find support for autism adults (especially Asperger). Many researchers or so-called 'experts' are not interested in autism in adults, because they said adult's brain are already 'fixed' and not that flexible to change compared to children's brain.
     
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  18. Professori

    Professori Professori

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    Society as a whole can make you feel bad, simply because there are so many definitive requirements that have to be lived up to.
    I did feel bad because I just could not understand that I did not fit in, and didn’t understand how I could fit. It’s very obvious that if you don’t socialize easily then there must be something wrong with you. I did not have friends, could not make friends, and just could not understand why others found me to be different and not appealing as a friend. So, I have always been alone, not able to easily understand what leads to relationship, or the incredibly shallow requirements for relationship.
    It takes a great deal of effort to ‘fit in’ and so I remain beyond the pale. It’s kind of like the difference between an introvert and an extrovert. Extroverts are easily accepted, but introverts are not, remaining isolated, and rejected simply because a preference to be apart, alone, and non-communicative.
     
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  19. Davvo7

    Davvo7 Active Member

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    Thank you for posting. I was diagnosed late, and have been trying to support a colleague who has also gone through the diagnosis meat grider. This will be very valuable.