Autism Dx 1: Aftercare 0

May 8, 2016 § 65 Comments

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So I finally got round to my post autism diagnosis GP appointment. On a tide of euphoria at officially becoming autistic I emailed my GP with a copy of my report, saying I would like to come in and talk about support. My GP wrote back promptly suggesting I make a double appointment and thanking me for the “interesting” report.

Hmm.

The word “interesting” in this context sent a strange uncomfortable signal to my brain. An example of autistic extreme sensitivity perhaps, but having suddenly become “interesting” I also suddenly became ill at ease.

In fact I recoiled.

I didn’t want my diagnosis report to be “interesting” to my doctor, I wanted her to help me. Becoming interesting for being autistic is a genuine fear, but I got it. She didn’t know what to make of my growing array of unusual ailments, which before diagnosis were tendered haltingly at sporadic appointments during which she did frowning and I did squirming. We couldn’t make each other out.

Now that it’s autism (cue gasp/head nod/chin scratch)  we’re suddenly on double appointments and interest, which makes sense. I guess this is what a label does.

But it won’t surprise autistic readers to learn that this set me back several weeks in making the call. We can be easily put off. Sensitivity and history combine often. We’ve been steamrollered with misunderstandings all our lives and will naturally want to avoid volunteering for more.

Time passed, anxiety subsided. My strategy of waiting seemed to have paid off. She’d forgotten how interesting I’d become and needed reminding of why I was there. Result!

Except no. As a tiny jolt of recognition passed through her body and she snapped to, and so prompted by her interest I launched into a brief description of the diagnostic process, and my subsequent progress towards untangling who I am after a lifetime of adapting to the neurotypical world.

It was lovely watching her jaw drop as I likened diagnosis to the euphoria of marriage and childbirth – I do like surprising people with this true fact. I enjoyed less my inability to convey the very real difficulty in becoming more authentically me after all the conditioning I’ve gone through. She misunderstood. Thinking I felt under pressure to conform to some notion or other I may have picked up of being more autistic, she counselled that I must only use what I needed of the autistic label, only that which was helpful to me.

Oh. Okay…

I began to discern that I was talking to a newcomer regarding autism and neurodiversity, a kind and well meaning  professional who at present couldn’t grasp the process I was going through. I was surprised that like so many lay people I know, she – a health professional – couldn’t imagine the emotional complexity of late diagnosis or autism as culture and identity. Only part of our difficulty in understanding one another was due to communication styles, the larger obstacle was that the person in front of me had yet to take a significant perceptual shift from the neuro-normative perspective in which a majority view of human experience is embedded.

Hmm.

I tried again – temporarily circumventing the long game we will have to play together if we’re to make progress in this relationship – and briefly explained that I wasn’t trying to be anything other than myself (adding that we’re all different), and swiftly pressed on to more practical matters.

Sleep. Overload. Self-regulation. Anxiety.

To my astonishment she prescribed a mindfulness app, which I duly downloaded but later rapidly deleted from my phone. I would need to subscribe to this and follow a programme of mindfulness exercises through which I would be taught mindfulness (!)

I made it to about 7 seconds of the download video before deleting. Then I hugged the inner child who had to pretend to nap on the rubber mats at nursery school because her racing mind just would not slumber. I was three but I still remember it most vividly. Post diagnosis it now marks my earliest sense of being different and wrong. The point is that I can’t follow your systems, I can’t aspire to your mindfulness template, I will fail, I will be wrong.

For those who are curious, a task such as learning mindfulness techniques (I’ve tried) goes against my wiring (think herding cats), and would also represent an additional cognitive load in my day – something new to remember and stick with. The app ironically contains too much information (and of a sequential nature) to process and is presented in an overstimulating way. This may work for some autistic people – but not for me.

With my newfound autistic self-confidence I pressed her for emergency sleeping pills. These I have been consistently refused in the past on the grounds of their addictiveness and side-effects. I get that, but sleeplessness is an extremely serious long term health risk not to mention the destructive effects on daytime functionality. This time she agreed.

On collecting my prescription I felt nothing but relief. If I’m entirely deregulated I might be able to get a night of respite and hopefully re-jig my body clock. It was not until opening the package that I discovered the pills contain lactose, something my GP should know I’m intolerant to.

Note to self – write to GP asking for lactose intolerance to be flagged up on my records each time she prescribes a new medicine for me. Perhaps there’s an app she can use?

My GP seemed to know nothing about local organisations from which I could derive support. Luckily I’m better informed and I know where to turn if needs be, and I’ll be writing to her with details so that the next newly diagnosed autistic patient benefits.

We have a long way to go together, and I can’t help reflecting that along with all our other challenges we must also educate the professionals whose care we fall under. This is the lot of the “lost generation” of late diagnosed autistic adults.

 

 

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§ 65 Responses to Autism Dx 1: Aftercare 0

  • Elena Thomas says:

    You are the expert on you. If you want your GP’s help you will undoubtedly need to train her yourself so she knows what to offer. Then maybe the next person through her door will get what you needed in the first place. Looks like it’s fallen to you to be the pioneer?

    Liked by 3 people

    • soniaboue says:

      Yes Elena – we are the lost generation I’ve heard say – so we’ll be the pioneers. I like my GP and get that she’s not there yet. It’s going to be another area in which to lead the way. Important but exhausting! TY for reading! xx

      Liked by 1 person

  • Megan McLaughlin says:

    You are right that you are the only expert on you–but many autistic folks have found mindfulness (in their own style) useful, so you might want to reconsider it. Here’s what a lot of people don’t get to begin with, or forget, about mindfulness. The whole point of the practice is NOT to stop your mind from racing around (that’s your natural state). The point is just to NOTICE when your mind is racing around and then briefly distract it with breathing before it goes back to racing. The idea is that the repeated, but gentle interruptions will eventually slow down (never eliminate completely) the racing. Hope this helps. If it doesn’t, forget it. You are the expert.

    Liked by 3 people

    • soniaboue says:

      Megan your comment has prompted me to write a new paragraph to clear up any misapprehension on reader’s part.

      “For those who are curious, a task such as learning mindfulness techniques (I’ve tried) goes against my wiring (think herding cats), and would also represent an additional cognitive load in my day – something new to remember and stick with. The app ironically contains too much information (and of a sequential nature) to process and is presented in an overstimulating way. This may work for some autistic people – but not for me.”

      Thank you for your kindness. Sonia

      Liked by 4 people

      • alatariel1092 says:

        I keep refusing CBT and a couple of other similar forms of treatment, b/c I know they don’t work for me b/c I’m not wired that way. But it’s hard to explain to a therapist WHY I won’t try it. All I could come up with was that I know what CBT is trying to do, so I can’t make myself believe it enough to make it work.

        Sometimes my problem is my “bad habit” of studying psychology and counseling, b/c I know as much as or more than the therapist about my own particular brain cooties and how they tick. But it came in handy the other night, reading about interesting psych cases, b/c one of them was an apparently psychotic woman who was actually diabetic and in severe hypoglycemia. Well, I remembered reading that when I was having some really bad physical symptoms and realized that I hadn’t eaten in over 18 hours, so I got myself some juice and crackers and began to feel better again soon. LOL

        Liked by 2 people

  • Elena Thomas says:

    Even as a neurotypical, I find other people’s systems are often useless as they don’t target the thing I need to target. It’s like copying someone else’s lecture notes… The thing you need is missing because they already know it, and the things they include are ridiculously obvious. I prefer to invent my own.
    “Mindfulness” I am having trouble with at the moment. Is it a new word? Or an old word that’s been copyrighted? I have been seeing it everywhere but associated with all sorts of things you now have to pay for.
    I am self-aware, and I know myself quite well I think. From what I see Sonia, you know yourself too. I’m sure you will explore and find solution your “cats” are happy with!

    Liked by 1 person

    • soniaboue says:

      Exactly so Elena! I am minded that the ubiquity and commercialisation of mindfulness is probably anti-mindfulness in a meaningful sense of the word. We plow our own fields and paths. xx

      Like

  • Kate says:

    I got diagnosed 8 months ago, I got zero support from the diagnosing team, except invites to courses I could not attend because I am in the minority of working full time, as a trainee GP I should add.

    Thankfully I have a very supportive GP and with her voice and my constant prodding I finally have an appointment to see the team psychologist soon.

    Keep being persistent. My problem was I knew I needed help but wasn’t sure what. The more I thought, the more I knew so I was able to go to them with what I needed and keep prodding!!

    I hope as a GP I can be supportive to my patients with ASD.

    Liked by 3 people

  • visualvox says:

    Reblogged this on Under Your Radar and commented:
    Really a fantastic read – so much of what she said echoes my own experiences and thoughts. Although I’ve yet to obtain an official diagnosis… and for the very reasons she lists. There’s no doubt in my mind about my own case, which lessens the pressure to be officially dx’ed. Tho’ it might make dealing with healthcare providers a bit more …. “streamlined”.

    Might, mind you. Might.

    Liked by 1 person

  • Rhi says:

    It makes me sad to think of all those who just aren’t up to being a pioneer. Interaction is exhaustion. Having to break new ground too?

    I have yet to visit my (lovely and incredibly good) GP post diagnosis. She didn’t think a label would make any difference, since I was already functioning so well.

    Perhaps I should pop back just to let her know that the label has been the most liberating, wonderful thing. It has stopped me comparing myself to NT people. It’s meant I’ve been and listened to people like me, talking about how they’re like me, and I’ve felt… Normal. Completely, bog standard and normal for the first time in my life.

    Not to have the label is to never experience being a normal person.

    Liked by 4 people

    • soniaboue says:

      Exactly Rhi – please do go back if you can and tell your GP – they really have no idea how vital to our wellbeing this authentication of selfhood is! TY for reading and commenting xx

      Liked by 1 person

    • VisualVox says:

      You should *totally* do that! GPs need to understand just how important it is for us. Our lives have slowly been fragmented by the stresses of living under the radar, and doing our best to keep out of trouble. NTs just don’t understand that, but hearing about the results from your first-hand experience could really help someone else.

      I say, go for it! Others may thank you for it.

      Liked by 2 people

  • […] and cred go to Sonia Boué for this great articulation of what an autism/Asperger’s diagnosis means to many of us […]

    Liked by 1 person

  • Gus Cairns says:

    I was diagnosed with Asperger’s syndrome at age 69 a whole lifetime wasted I was given Beta Blockers for anxiety 40 years ago and anti depressants 10 years ago I still take both . I was only diagnosed December last year so only a few months ago . I have worked been a DJ and now do voluntary work with NHS I have never had a close relationship always felt awkward when not working . I need to work to keep sane don’t know what to do when I cant through aging

    Liked by 3 people

  • Dan S says:

    My goodness, I feel as if I wrote this with how similar my thoughts/experience are to yours!! I will continue to follow your posts.
    Thought: NEVER go into any medical appointment unprepared!! I go in telling my Dr; this is what I’ve found, this is what I want, this is why. Rarely do I not get what I’m asking for, partly because request is always logical.
    I too was overjoyed upon finally having a diagnosis. It was followed though by extreme sadness & confusion. How much of my perception of self is reality? People started telling me all these things I did that I really didn’t realize (i.e. Ritualistic patterns).
    Thanks so much for your thoughts, can’t tell you enough how much I appreciate them.

    Liked by 2 people

  • libbywalkup says:

    Thank you for writing this. My diagnosing psychologist was pleased, almost elated even, by my being “well-adjusted,” that she didn’t offer me any follow up support or suggestions even though when I came in I was pushed to my edge with anxiety while working full time for basically the first time in my adult life (I’m a degree addict). Even she, an expert in autism, didn’t take into consideration the ways I was still struggling internally despite my being well-adjusted. So I’m seeking another degree. 😉

    Actually I spoke with my friend’s wife last week who is also a diagnosing psychologist of children and though very intelligent she misunderstood some of the things I was saying about this thing exactly, shedding those ways in which I was being held to an NT standard, and was skeptical of my diagnosis because again i seem well-adjusted. She didn’t press it though, which I was thankful for, they live in Sweden and though they’ve been together for quite a few years, she and I are still just getting to understand each other, and I’d hate to feel uncomfortable around her when we all are in the same place.

    I want to offer suggestions of course, because that’s what I do, but you seem to have your sleep thing handled. Personally I find a combination of meditation, yoga, walking, and free journaling a great help to quiet my brain, life changers to be honest, but different strokes.

    Just, like, thank you, I often feel very isolated, in part because at the moment I am literally quite isolated.

    Liked by 3 people

    • soniaboue says:

      Hi Libby – thank you for your comment. You are very kind, and it is astonishingly difficult to get across to NT whats going on with us! Hang in. Sonia

      Like

    • susan kruse says:

      I hear you Libby. I understand your isolation – sometimes my own isolation threatens to overwhelm me, making it all too much. In spaces like this (thank you Sonia!) we hopefully realise that we are connected, that we do have a tribe of like-minded people. If your isolation ever gets too much please do get in touch and know that you are part of something susankruse(at)yahoo(dot)com

      Liked by 2 people

      • soniaboue says:

        That is beautiful Susan – likewise find here or contact me via soniaboue.co.uk – contact page gets sent through to my email. xx

        Like

      • libbywalkup says:

        Thank you both, I’m overwhelmed with appreciation and the community that’s arising from this post. The responses to your post Sonia, are making me feel less isolated already, and actually, sparking some ideas. I’m a writer, editor, and I’ve done some publishing, (am also about to enter a program for library science and bookbinding, that’s another story) and seeing these comments come in and my own experiences, I was thinking that an anthology of experiences from late diagnosed women on the spectrum might be a really wonderful thing. I’m thinking about putting together a call for submissions. I know that it’s not the aftercare that we need, but it may be a space for our voices and experiences and give some some answers to questions they didn’t realize they had. Shrug, I know that what pushed me into seeking a diagnosis was reading the experiences of women on the spectrum (my research prior to then had been of men) and just sobbing.

        Liked by 3 people

      • soniaboue says:

        Hi Libby – how wonderful! I’m glad the blog post is having a positive effect. Your idea for a publication sounds excellent – keep me posted. S x

        Like

  • I am sooooo glad to find someone else who understand that this new and trendy “mindfulness” approach just will not work on some of us differently wired! I have had pushy NTs insist that I must’ve got it wrong!!! and been flabbergasted at how ironically lacking in empathy they are (who’s impaired now, then?) about seeing a paradigm that is not their own. Ah… autsister, I hear you! ❤

    Liked by 1 person

  • liberatedape says:

    You people. My people. I was diagnosed 5 years ago. Have been offered no follow up support, but my problem is that I don’t even know how to ask for it which i am sure is a problem that many other autistic people face. We definitely speak a different language! I am astounded by Sonja’s literate explanations. You manage to articulate what I feel but cannot say, actually more accurately you articulate what I feel but believed I wasn’t allowed to express. Being an undiagnosed autistic person means a lifetime of being wrong. It’s very hard to break that belief of inherent wrongness, incredibly hard to retrain your brain to trust itself and to believe that it’s way of being in the world is right and valid. I’m not there yet but reading this post and the comments gets me closer.

    Liked by 4 people

    • libbywalkup says:

      “It’s v. hard to break that belief of inherent wrongness…” I feel this so much. You may try Tara Brach’s Radical Acceptance, or listening to her talk podcasts (she also has guided meditations). She IS a meditation coach, and if that’s not helpful for you, just skip those bits, the first time i listened to her it happened to be on “you are enough” and I’d just begun to realize I how much I didn’t trust myself and how much I thought I was wrong just for existing, that happening upon that podcast on that night, I sobbed and sobbed. I’m not saying I’m fixed yet, and totally confident and comfortable in who I am and my choices, etc., but hearing her talk about that was a great help.

      Liked by 2 people

      • soniaboue says:

        TY Libby, I’m glad you’ve found what can work well for you!

        Just knowing that I am autistic, and being public about it, is proving such a relief that I don’t actually feel so “wrong” anymore – I now reject this as NT bias. Perhaps because I’m so logical (?) dx makes all the difference to me. This is one major reason why I believe so strongly in the importance of dx no matter what age you are. The prevailing NT culture has made me feel wrong forever, but now I’ve been set free. Holding this space in my head may be equivalent to what you can achieve through mediation too – perhaps we are arriving at similar places by different means?

        Liked by 3 people

      • Dawn Hughes says:

        I am awesome at meditation, and can do that all day, day after day. Amazing pineal gland! It’s an escape from the outer reality that I don’t fit in to. I appreciate your comments about diagnosis. I am pursuing it, because of reasoning you expressed.

        Liked by 2 people

      • libbywalkup says:

        I believe we may be. And I felt the same. The diagnosis, though presented some challenges, such as what to do next, has also released me from a lot of those NT obligations without feeling guilty, like answering the phone. 😀

        Like

    • alatariel1092 says:

      My NT therapist kept trying to convince me that I wasn’t bad or broken or wrong… but the rest of the world keeps proving HER wrong. My family was convinced I was born bad, and it was up to them to punish the Autism out of me… w/o ever knowing I was Autistic. All they knew was that I couldn’t “be good” or manage to “act right” no matter how smart I was, so they concluded that I was just no good and they had to emotionally and even physically beat me into submission for their own reputations to stop suffering from my bizarre personality.
      I don’t actually think it’s possible to overcome that kind of abuse. The sense of being bad and wrong is so deeply embedded in my psyche that it’s as much a part of me as my brown eyes. Having a dx finally has helped me stop trying to be NT and force myself into that mold and deny my own personality, but I’ll never feel deserving and worthy and human.

      Eh, who wants to be human anyways? They’ve destroyed the planet, and are busy destroying each other every day. Stupid, dangerous animals, they are. 😉

      Liked by 1 person

      • libbywalkup says:

        sending support alatariel and <3. I'm sorry that happened to you and don't we all wish it was like Good Will Hunting, and Robin Williams can wrap his arms around us and tell us it wasn't our fault six or seven times and then we can cry, finally really understanding it wasn't our fault, then pack up a car and chase a girl across the US?

        I've come a long way to enjoy spending time with myself and to do things I want to do and even pursue paths my parents still chide over, though I'm 33, I may never be able to support myself since I can't seem to work full time without crying myself to sleep at least once a week, but as I'm entering school again, we'll have to wait and see. but the thing I can't quite, well, I'd stopped dating because I realized I was choosing even mildly abusive situations (doesn't love mean you have to change to adhere to that person's idea of normal? no? gasp) and then I met this person who I just think he's everything, really. he's kind and open and intelligent and funny or at least laughs at my jokes, and he seems as eager to explore as i do. we've been developing a friendship over the last nine months albeit from a distance and the last time we were in person and every time I've thought about him as potentially reciprocating feelings (because I have no idea how to tell that unless someone's trying to sleep with me) I sobbed the whole drive back home and every time I think about it. there isn't a single cell in my body that believes someone so lovely could ever also be physically attracted to me and want a relationship with me. I know that's just a small thing. one could go through perfectly content without a relationship and many people are in less than fulfilling l ones. But I'm pretty sure the only thing who will love me unconditionally is my dog.

        anyway. I'm crying again so I've got to stop, but just to say. I don't know. just keep doing you. I suppose the universe will decide the rest?

        Like

  • Dawn Hughes says:

    I am new to board this ship. How are women with children coping through this alone? I have no family. No one supporting me. I am praying, stimming, hiding under a blanket most days. Just waiting for the process, next appt in 3 weeks with autism clinic, insurance approved, person to diagnosis me. Help to start to arrive? Does it ever? Really?? I do have talents and artistic gifts and high IQ but withoit relationship abilities, there seems no point.

    Liked by 4 people

    • Hi Dawn, sorry that you are in this difficult situation. There are some groups out there specifically for autistic women. You might find some support there. Autism Women’s Network (USA) and Autism Women Matter (UK) are on Facebook, I think… xo

      Liked by 1 person

      • soniaboue says:

        TY Bunny – I had a long day yesterday and couldn’t respond myself, so I’m really glad Dawn will see your suggestions for support. What I’m struck by is so much unmeet need for support – through the comments to this post I’m seeing reflected an avalanche of misunderstanding of autism in adults. It made me very sad. S

        Liked by 1 person

    • alatariel1092 says:

      This woman with children is coping alone. I’m probably actually NOT coping, but just managing and putting out each fire as it occurs. Oh, well, I can’t change other ppl, I can only change me. And my change is to stop trusting, stop trying, and just keep myself to myself. I no longer want friends or relationships, too much work and I just get hurt, used, and abused. NT ppl will never accept me, and I couldn’t care any less any more. I don’t want anything from them.

      Liked by 1 person

  • libbywalkup says:

    I have to say some amazing things have happened to me through meditation, which I experience as sitting quietly and either counting to ten over and over and over again with the out breath or tying thoughts to helium balloon strings and watching them float away with my mind. Questions have been answered. Paths have changed for the better, etc., but I definitely don’t adhere to mindfulness as a pop culture thing or the crazy apps that come with it. I’m hardly consistent in my practice (because regimented schedules don’t work for me) and I use a whole array of other techniques to calm anxiety, etc., etc., but three days ago I would have recommended meditation to everyone staunchly believing that it’s absolutely what everyone is missing, but you all are teaching me something, so thank you.

    I do however have this great ambient sound app if anyone’s looking for ways to cut or create background noise for any reason. It has been an absolute lifesaver when my father has the tv so loud I could watch it with him in wax earplugs without missing a word. There is absolutely no wall or door in this house that can block that sound and my auditory senses can’t deal most of the time.

    In related news I bought an adult coloring book yesterday (I read a headline once that said that coloring is the closest one can come to a meditative state without meditating) even though coloring isn’t really my thing, I’m too impatient with it, but I thought the designs were pretty and it was on sale. So there’s that.

    xx

    Liked by 1 person

    • soniaboue says:

      Great news Libby – I will be curious about the colouring book. I see that they appear everywhere. Let us know how that goes 🙂

      Like

    • alatariel1092 says:

      I ❤ adult coloring books, it's a great outlet for my creativity, portable, and easy to find now. It does help me calm down and "space out" when I need to. 🙂

      Liked by 2 people

  • hvmorris23 says:

    A colleague of mine who is very similar and possibly has aspergers too (but not diagnosed) suggested 5htp. I hot the began variety for my partner, it’s supposed to improve sleep patterns. Also for the anxiety get evening primrose oil, they do vegan allergy free of them as well because gelatin hates me. They enabled me to find a voice regarding a racist customer and the ability to ring the police about her, that I would have shied away from before. I’ve felt Much improved. I also got an intolerance test on wowcher that suggested my issues with food and what vitamins I need. I still haven’t got a diagnosis and it infuriates me but I know me better than they do and I’m just finishing an autism course online so in ready for the next gp visit.

    Like

  • alatariel1092 says:

    I finally got my dx, when I finally found a “medical professional” who was willing to admit that I just might know what I’m talking about when I tell them I have researched the subject intensively for the past 10 years. I have a MS degree, have taught college courses, and currently work as a librarian… but medical ppl brush me off as though my only qualifications to study anything include watching Dr. Oz and buying tabloids at the grocery store. >:-(

    However, my dx is completely useless to me, since there are NO support systems or resources or help of ANY KIND for autistic women in my county, and very few in my entire state, none of which I have access to. I’m alone, with zero social support, zero community, zero friends, and was disowned by my “family” back in the 90’s b/c they were finally tired of abusing me and realized I would never conform to their standards.

    What now? Try hard to keep my head above water, since I can neither get nor keep a job in this economically-depressed area, keep fighting for the disability I deserve for the herniated disk in my neck and all my mental issues, and hope to keep a roof over my kids’ heads until the youngest is out of HS in 4 years. After that, probably a cardboard box on the street, since I’m not broken enough to qualify for any help.

    Am I a little bitter? What was your first clue?

    Liked by 1 person

  • Pqw says:

    This is for libbywalkup (I can’t figure out the nesting). In your anthology idea, how do you feel about including nonbinary people, late-diagnosed? I’m nonbinary, self-dx’ed last summer, at 49.

    I’d been going to therapy since I was a kid, for being all-around Weirdo Freak basically; no one ever suggested ASD as a possibility. I now realize most of my family of origin probably are on the spectrum, although we’re estranged, so they’re not going to get tested either.

    So much good food for thought, as usual, Sonia!

    ~Mea

    Liked by 1 person

  • digggy says:

    I’m getting tremendous backlash to my attempts at coming out at 40. I am ready to tell my story about the child abuse I experienced and of course certain members of my family are telling me to f-off. My life is my fault, noone can help me. I keep going back to these blogs. To help remind me. How important this is. There are others like me.

    Liked by 1 person

  • Jay Cee says:

    Okay, I’m commenting here after commenting on someone’s repost of this on a FaceBook page and it turning into a looooong comment… (Um, hi… I come in peace…)

    Reading this, I’m trying to work out what you actually want or think your GP is going to do for you now you have a diagnosis. I can understand if you want help with anxiety or a referral to a shrink, but… I’m genuinely confused here.

    I dunno… I can understand people getting diagnosed as adults if they can afford it (it’s prohibitively expensive for a lot of us…) and if it allows you to make peace with the difficulties you’ve been through so far and be able to understand on an objective level that there’s nothing wrong with you, etc, and I can totally get it being helpful so that people can understand themselves and plan for possible issues.

    (ie. mentally preparing yourself for, say, an overly-stimulating multi-people gathering, and rather than assuming that you *should* be able to do it– and feeling bad for not being able to afterwards–, or attributing a decreasing mood to something else… and being able to, say, limit time there and keep the day afterwards booked for personal decompression time or something) and be able to advise for communication stuff (ie. “Please don’t expect me to look you in the eyes; I’m not being dodgy or rude, I genuinely can’t do it without it being weird, and note that I’m likely to take stuff literally/have a weird sense of humour” or “I might need some suggestions with integrating medication into my routine” or whatever your exact “quirks” are), but I’m not seeing what the GP is meant to actually *do* here: you might be the first adult autistic person they’ve met, or the first person who’s been like *this* and autistic.

    GPs are still just *General* Practitioners, and honest-to-god, I’ve gone into them for everything from skin issues to depression, and seen them Googling stuff, not to mention I’ve heard more than enough horror stories to last a life time when it comes to GPs being shitty nutritionists or REALLY BLOODY AWFUL about psychiatric issues. GPs are basically like a starting point, but there are going to be areas where they have blind spots.

    Another thing that I think is worth pointing out… even autistic organisations themselves aren’t always helpful or perfect. Often they’re focussed on little kids and staffed and run and organised by people who don’t get where adults are coming from, and sometimes they can be inadvertently awkward or weird for autistic people. Sometimes the “mainstream” stuff GPs suggest is stuff that works for a lot of neurotypical folk but not for everyone else, and since we’re talking about an area that is still fairly “young” (I mean, seriously, when most of us were kids, they were looking for the nonverbal kid who rocked in the corner and obsessed over trains, and anyone else who might have shown “spectrummy traits”– especially if they weren’t white and male and if they “didn’t look disabled” generally went under the radar… and as a result, we’ve sort of grown up with an interesting perspective, I guess) and it’s, like, startling news to some experts that, “OMG, there are female people who are on the spectrum” so your average GP is probably going to have even LESS of an idea… So it’s often worth being a bit proactive and seeing what’s up your alley.

    Random aside: okay, mindfulness doesn’t diddle your skittles– I can’t say I find it beneficial, either– but perhaps there’s some other “calmer-downer” you can engage with? I’ve seen research suggesting Tetris, of all things, is actually good for PTSD sufferers, though I think for other people with mental health stuff going on, it can “distract you out of the bad stuff”. (Only problem is that most phone versions have horrible controls, especially if you’re familiar with video game controllers!) Another one is just getting into what you’re into, if you have some sort of serious interest. Doing all that “focus on details of things happening in your reality” thing or breathing stuff doesn’t work for everyone, but destressing over something encompassing and interesting which requires you to think can work for some people…

    Anyway, I’m sorry this got seriously long; I didn’t mean it to. All the best with things, and I hope you get some peace now that you have the dx.

    Liked by 1 person

    • soniaboue says:

      I read you Jay – thank you for your comment! S 🙂

      Like

      • libbywalkup says:

        Ug, you guys, I recently had the most–uncomfortable experience. I met up with my high school bestie and his family this summer. They all live in Sweden, I was in Minnesota. His partner’s a psychologist currently on the diagnostic end of ASD, primarily of young children, she’s met me twice and only briefly (spent afternoons with me), but this second time, after my diagnosis, she was all like oh I wouldn’t think you were aspie, which, fine, whatever, unprofessional, but i felt like I had to defend my diagnosis, which I didn’t do well, put on the spot, then later shared with her a presentation Tony Atwood did to more articulately express the whole woman aspie traits thing, though it was meant for laypeople and not practitioners, I hoped if she wasn’t already introduced to the criteria she’d be curious enough to look into his studies. NOPE. She thinks he’s too narrow and doesn’t understand co-morbidity, etc. I don’t know enough of where the base of her research is coming from to engage with her on her level, she’s fiercely intelligent, and I’m only well read on the subject, but either way, like, she’s my bestie’s partner, I had to just stop because I didn’t know how to safely respond to her. I only see him once every few years as it is, so I don’t want it to be this big argument about whether or not I should have been diagnosed. And all I can think is had this been five years ago when I was still so fragile and undiagnosed and before I sobbed in the pre-screening psychologist’s office because i didn’t think she’d believe me, this experience would have crushed me. I didn’t know who else to talk to about it, when I saw activity here again, I thought this might be a safe space. :\

        Liked by 2 people

      • soniaboue says:

        I’m sorry Libby – how difficult it all is to get across to people who think they know it all so much better than a diagnosed autistic ever could! This is a safe space and I’m glad you mention your experience here – you are not alone. S

        Like

      • soniaboue says:

        Libby can I also ask if this post has been recently shared on FB – I’m trying to make sense of all the new activity on what is an old post. TY 🙂 S

        Like

      • libbywalkup says:

        It sounds like it from above. I on the other hand must have set up a notification for new comments on this post, so when Jay commented, it came to my email.

        Liked by 1 person

      • libbywalkup says:

        Also, thank you for your kind words. It’s such a terrible thing: “You appear fine, therefore you must be fine.” “But i’m telling you I’m not fine.” She said something about recognizing that something was “off” in adult folks she’s met who had been diagnosed, which makes me so angry when she’s not looking at Atwood’s research seriously. If you don’t believe me, a professional steeped in research specific to women is telling you that we often DO appear fine. But mostly I worry about the young girls going misdiagnosed. Anyway. Thanks for listening. Hope things are going well!

        Liked by 3 people

      • soniaboue says:

        Just so maddening that anyone can be quite so arrogant, especially when Tony Atwood is a recognised specialist in the field with many years experience and an international following. But hey…

        My pleasure to be a friendly voice and thank you, it is going well so far. Diagnosis had been intensely liberating for me. Keep in touch 🙂 S

        Liked by 1 person

  • I guess I was lucky that my PCP has an autistic niece…when I asked for a referral to get a proper diagnosis, he didn’t dismiss me…and this was a PA…in 2009 and 2007 I had a psychiatrist and psychologist tell me I couldn’t be autistic because I was female/engaged/employed/married/pregnant…ugh. Finally diagnosed this year at 35, ADHD superimposed on autism. I wrote two papers last semester, specifically on how autism needs to be more recognized in girls/women by the medical community. I’d be happy to share it if you’re interested…thinking I should probably find a place to publish both papers online.

    Liked by 1 person

  • Sonja says:

    I must have missed this when first posted! Everything echoes my own experience/feelings… not read all the comments yet but looking forward to. Love the beads and shirt!

    Liked by 1 person

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