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My doc referred me to a specialist and I keep thinking...

Discussion in 'General Autism Discussion' started by zozie, Sep 16, 2020.

  1. zozie

    zozie New Member

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    ...what if the specialist finds that I don't have autism? What do I do then?

    This is a fear my teenager, referred by their own doc for assessment for autism, also has. What do we do if we know, or at least very strongly suspect (because no other pieces fit including our early childhood), and some NT doc says "You didn't tick enough boxes you're fine. You're verbal, you're fine."

    Or worse: "You're delusional. And also you looked at my eyes just now, so no."

    I've recently been accepted into vocational rehabilitation for the second time. I managed to get through schooling and get my bachelors the first time, but when I started working, it all went to crap.

    I also have CPTSD, but I've make huge progress through VR and the right treatment. I know there's an overlap. It's actually been a lot easier to tease apart that overlap because of the progress that I've made.

    But what if I don't check all the boxes? What do I do? What if my kid is told they're just too normal-looking? How do I help them?

    Mostly, I'm just anxious and wanting to know if anyone here has shared this feeling of "What do I do if I'm not diagnosed?" I need a diagnosis for the services I'm utilizing. My kid already has a modified education plan for their Panic Disorder and GAD, so they use services, too.

    What if?

    *sigh*

    Thanks for listening.
     
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  2. menander

    menander Well-Known Member

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    It is hard. And for women, harder. Take any records of your childhood. That is a requirement. Any delays at all. Take a family member with you. That will matter a lot. I don't know why they are so dismissive of women. But that seems to be a trend.
     
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  3. Giraffes

    Giraffes Well-Known Member V.I.P Member

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    Yes this may help, i had no person who could talk about my child- hood and other experiences and my path to diagnosis involved privately funding a Autism specialist report due to being ignored by my GP.
     
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  4. Thinx

    Thinx Well-Known Member V.I.P Member

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    If the specialist really is a specialist ie they are trained and they update their knowledge then they shouldn't get the diagnosis wrong, albeit clearly it's a hit and miss business judging by the experiencesof people here and in general. Fingers crossed. It sounds like you have an inner certainty based on the way the aspects of autism fit your experience, and that's usually what's important.

    Unfortunately needing the diagnosis for funding reasons makes it more crucial, otherwise I would say, go with your own gut, it doesn't matter what the specialists say, they are fallible. Hope all goes well for you and your young person.
     
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  5. Moonhart44

    Moonhart44 Well-Known Member

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    these were my fears when i got officially diagnosed a few month ago. I think fearing that secretly confirms it. i was afraid i would be bias some how, and because i was told i might have autism, that i would "act" like i have it. but the psychologist even called out some trait i didnt even know i was doing.

    the diagnosis is the first step. maybe secretly you are in denial? i feel this because i have been in a big pool of depression since it was even suggested by my first counselor.
     
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  6. zozie

    zozie New Member

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    My therapist, who only wrote the referral, did say that his favorite part of the Autism Conference my alma mater held last year was a panel of professionals ("Two women, four men, the men diagnosed in their teens, the women in their forties") and he acknowledged the past mistakes with misdiagnosing women. He then added that he'd be referring me to an expert who "was so good he could tell a diagnosis without even seeing the person" and I had to communicate that while I'm pretty sure he meant to comfort me, by no means was I reassured by this description, and did he have some data, please tell me this expert used data.

    I like my therapist a lot. He seemed to realize that I was not comforted, and switched gears and gave me some numbers.

    I can see where you're coming from, but for me, I think I'm scared to hope. As horrid as giving up on the dream of a satisfying life is, at least one is spared the disappointment of something better.

    As I say this, I gnaw on a new chew object I got in the infant section of the store. It's so weird how much better I feel. I've never stimmed with a chew toy before, but it's amazing.
     
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  7. elbowgrease

    elbowgrease Active Member

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    I had to find a specialist for my assessment (California has "regional centers" around the state, here it's the Redwood Coast Regional Center. Don't know what you might find wherever you are). It was an entirely different experience to talk to a specialist than to talk to anyone else (including a therapist who claimed to be very familiar with autism spectrum disorders). I think if you can find a specialist near you it's probably worth checking out, and if that doesn't go well, maybe look for another.
     
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  8. Luluofthevalley

    Luluofthevalley Daughter of Israel

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    I am so happy I happened upon your post because I actually have my first VR orientation session tomorrow. My main goal of doing VR is to finally get an official evaluation for autism, but if I also can get set up with a job suited to my strengths, that’d be great, too!

    I relate to your post a ton because I also worry about not ‘passing’ the test, even though the online tests I’ve took (as well as the social history of my life), all point to me being on the spectrum.

    I worry about following through with the VR process because the other day a user here told me that in his experience VR is mostly suited to help people with mental and physical disabilities and don’t know what to do with people who are high functioning and thus only mostly have social disabilities. Was that your experience? Also, how were they able to help you with CPTSD? ( I have that as well).
     
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  9. zozie

    zozie New Member

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    1. When I applied to VR, I was so far at the end of my rope from coping on my own, I actually had researched my symptoms and knew I had complex trauma, so I requested a counselor who had experience with that sort of thing. Specifically. I ended up getting a counselor who works with folks who have brain injuries and such, and she has been a godsend. She understands the challenges of executive functioning, triggers, stress, etc.

    2. CBT works for many, but not for me. The most I got out of it was being able to work out (in logic) my own problems in front of a therapist. But I read a book a few years ago, The Body Keeps the Score by Bessel van der Kolk, who mentions somatic approaches to trauma like EMDR and techniques like Internal Family Systems. His work changed my life, and I refused to be treated by any therapist who did not know van der Kolk's ideas.

    I began with EMDR, and my therapist was getting into IFS so we do that now. Neither treatment seeks to rationalize the trauma -- the main approach is to observe and describe, and then either move the body or separate the traumatic response into internal parts and to have a dialogue (or both). But it's not about adjusting the cognitive reaction to the trauma. That has helped me so much. I went to weekly therapy for about 3 years, then paused for a bit, and now I go 2x month.

    Additionally, I began running. Learned later that running, cycling, walking, are forms of self-administered EMDR (at least the reprocessing and desensitization bit), so if I don't do that, I'm usually worse off despite the right treatment.

    3. I'm not sure how things will turn out when I see my VR counselor (also tomorrow, and this will be the first time we discuss autism as a serious possibility), but there is a high prevalence of autistics in Utah for some reason. Also ABA is a huge trend, but that's another story. I'm nervous, but since I have been accepted a second time, it seems that they really do want to help me.

    4. VR counselors are fallible, too, but I have been given positive feedback about being earnestly invested in the program. And I am pretty sure that while all of the counselors are well-meaning, asking for one with experience with brain stuff was a huge help for me.

    On a positive note, my younger son had his parent-teacher conferences today, and as he has been struggling with overwhelm, I let the teacher know that I'd be pursuing a modified education plan for him. All of the teachers were enormously supportive, which helped my son feel less alone and more cheerful about his schooling experience.

    Hope this is helpful.
     
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  10. Aspychata

    Aspychata Serenity waves, beachy vibes

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    Love running and walking.
     
  11. SDRSpark

    SDRSpark Well-Known Member V.I.P Member

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    Wow, I'm going to have to look into Van der Kolk's work. I also have a bad time with CBT - seeing something from a logical perspective does absolutely nothing to alter my emotional response to it. The best I've been able to do is stop myself from feeling bad about my emotional responses - which was a big help, but didn't do much for the root of the problem (in that regard though, Nick Wignall's work has been immensely helpful and he makes a lot of it freely available online through his website, I encourage anyone and everyone to look it up.)
     
  12. zozie

    zozie New Member

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    VR UPDATE:

    I went to see my Voc Rehab counselor today and the first thing she asked me was, "What if you don't get the diagnosis you want?" I had dressed in soft and nice clothes -- a fitted pair of jeans, sweater, and boots -- and I told her that I'd not believe the assessor and seek a second opinion. I also conceded that there is overlap between CPTSD and autism and that I have had practice questioning what is real and what isn't, and she seemed to latch onto this and dug a little deeper into the concept of a fluid reality.

    I was quite nervous because I'd brought a stim toy and I was messing with it in my hands and I've been experimenting with not making so much eye contact and just letting my eyes roam if they want to. I find that I make eye contact for a few seconds and then look away. Anyway, my gut told me that my counselor was thinking that I was having some sort of break from reality with the whole autism thing, even though I was specifically referring to the practice of questioning what is real within the context of a PTSD response.

    I gather that my counselor sees more classic presentations of autism, or perhaps more men, I don't know, but I did find her saying things like, "People with autism don't question their viewpoints. They're sure of their reality." I thought back to how many times I've heard autistic women wonder if they were "crazy", if you pardon the term. And I thought to myself, quite unquestioningly, "she's wrong." So. Make of that what you will.

    However, what seemed to be at the heart of the conversation was my counselor seeking to reassure me that even if I didn't get an ASD diagnosis, she was there to help. It took a while for me to understand that, but we got there. So fine, she thinks I'm somewhat psychotic or whatever, but at least she will not say as much outright and wants to help.

    It was really tough to let myself be weirder than usual. I gave my opinion quite definitively instead of offering many alternatives to my perception ("on the other hand..." is one huge masking tool I've recently realized), and let myself stim, and let my eyes roam. It was ...when I relax like this I almost feel like I'm pretending, as strange as that sounds. I'm so used to monitoring how I appear and what I say. And I guess I'm still doing that, but instead of adjusting, I'm merely hyperaware of my difference.

    We will see what the assessor says, likely sometime in the winter or spring. In the meantime, this is a vulnerable spot, but if I am to get the help I need, I must communicate my needs instead of hiding them.
     
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