Know thyself [Mental Health Monday]

There’s been a revival of the self-diagnosis debate as it pertains to the Asperger’s/autism spectrum on social media (three guesses as to which platform, but you’ll probably only need one).

I wasn’t surprised by who started it, but I am surprised by who agreed with them.

The topic is ridiculous–not that self-diagnosis/assessment/evaluation/identification (whichever word appeals to you) is ridiculous, but rather, that its validity is debated or even questioned at all.

People know how–and who–they are.  Anyone who is honest with themselves and can separate reality from fantasy can look at the list of Asperger’s/autistic traits and nod and say, “yep, that’s me” or “nope, that’s not me”.  And people have a general understanding of proportional math; given a list containing a certain number of traits, the more traits to which they can nod in the affirmative, the more likely they are to be on the spectrum.  (This is, of course, given that the trait list itself is comprehensive and doesn’t leave out entire categories and whatnot.)

What else is ridiculous is the opposition to self-assessment and the arguments made.

Arguments like “people shouldn’t be able to diagnose themselves off of one quiz”.

I have not yet come across a single person who said, “I took the Asperger’s/Autism Quotient test and it said I was autistic”.  Though they probably would actually be within their rights–and probably correct–to do exactly that; according to research, 86% of those who score in the 26-31 “borderline” range have been correctly found to meet the diagnostic criteria.  Despite the accuracy of this test (which is indeed used by many medical/psychological professionals to render a diagnosis!), everyone I’ve ever known to self-identify as Asperger’s/autistic has merely used that quiz as the starting point for a long journey.  For them (myself included), that quiz wasn’t an open-and-shut OK-that-settles-it endpoint; instead, it was a jaw-dropping, OK-take-a-deep-breath-and-keep-researching launchpad.

Let’s go through some of the (ridiculous) arguments made by those opposed to self-diagnosis/assessment/whatever, and explain why they’re crap.

“You can’t possibly be objective about yourself.”

Delusions or inability to separate fantasy from reality are not listed among the Asperger’s/autism diagnostic criteria.  Thus, the Aspergian/autistic mind is generally a sound one.  It’s not a mental disorder, despite its persistent (inaccurate) inclusion in the DSM of Mental Disorders.

This means that yes, the autistic mind can be “trusted” to be accurate.

No one knows a person better than themselves.

That doesn’t mean that it’s not also a good idea for partners or other family members to complete an observational questionnaire of their own, but no one lives with you 24/7 except you.  No one can observe you every minute of every day like you do.

Maybe some people are uncomfortable pointing the laser of truth at themselves, for whatever reason, and many reasons are legitimate.  But don’t lump everybody in with the few who can’t, because in my experience, the majority can.

Speaking of objectivity in relation to a formal diagnosis by a professional, let’s get one thing straight: there is no such thing.

Read that again: there’s no such thing as total objectivity in a formal diagnosis.

This is because it’s not a “what” that’s doing the professional assessment, it’s a “who”.  This implies that a human being is at the helm, behind the clipboard, performing the evaluation.  And again, they don’t know you like you do.  They’re going to spend anywhere from a few minutes to a few hours with you.  Sure, they’re going to ask all the pertinent questions.  

But in the end, a formal diagnosis is all about interpretation.  Many of them fail to pick up on glaringly obvious traits because they’re used to evaluating 6-year-old boys.  A female in her 30s is probably going to present quite differently.  It’s up to the evaluator to decide whether someone meets the criteria or not.  My own evaluator, a licensed PhD psychologist and an expert in adults on the Asperger’s/autism spectrum, said himself that the diagnostic process is incredibly subjective.

“People just say they’re autistic for attention.”

I’m willing to bet some people do.  And I’m willing to bet just as much that those people aren’t on the spectrum.  And I’m also willing to bet that the vast majority of self-diagnosed/assessed/identified autistic people don’t do that, if any at all.

In fact, most genuinely Aspergian/autistic people have heavier debates with themselves concerning who to tell, when to come out, and how to bring it up.  Most people in our lives are kept at arm’s length, and our truth is carried with us as our secret, on a Need To Know basis.  That’s not exactly attention-seeking behavior.

In an unofficial Myers-Briggs survey I ran last fall on social media, of the 100 or so people who responded (and I requested that only those on the spectrum participate), only two identified themselves as being more extroverted.  That is to say that only two people out of a little more than 100 had a Myers-Briggs type that started with an “E”; everyone else was an “I”-something.  Introverts tend not to be ones to throw themselves into the middle of a crowd and say, “look at me!  I’m autistic!”  (Not that I’m implying that the “E” Aspie/autistic peeps would do such a thing, either!) ๐Ÿ™‚

You can pretty much tell an Aspie/autistic person because when they find out that they might be on the spectrum, they’ll keep digging and digging, treating it as a diagnosis/assessment of exclusion, after having rules out all other possibilities.

I have a few questions of my own:

Who knows autism better than those living it?

Who made neurotypical gatekeepers the almighty authority?

Who says they know everything?  Who says that they can’t make mistakes?

If you’re against self-diagnosis and you insist that everyone who “wants” to call themselves autistic obtain that piece of paper, are you going to front the average cost it can take to get this done, and/or are you going to suffer with them while they wait and wait for an appointment months or years in the future?  I hear that the average wait time in the UK is 1.5-2 years.  I also hear that the average cost in the US is $2,000-5,000.  Are you going to live that person’s life while they languish?

And official diagnosis can bite one in the ass, especially in the US.  It can rear its ugly head anytime, often in ways that one can’t always anticipate.  Should their official diagnosis become an issue and soundness of mind get called into question in, say, a child custody case where they face losing their children, or an employment case, where they face losing their job or have to jump through extra hoops in an eligibility process, are you going to show up in support or help pay their expenses?  Should their diagnosis bar them from fulfilling their dreams, are you going to offer a listening ear every time they’re reminded of this?  Are you going to pay for the counseling they’ll need for the depression that’ll likely result?

I thought not.  So the elitists can shut up anytime now.  Anytime at all.

And it is incredibly elitist to shun a genuine self-identified person just because they’re missing a piece of paper from a medical model gatekeeper.

It’s also an incredible insult to the perceptive autistic brain to imply that it’s not good enough or competent enough or sound enough to come to a conclusion about the person they know best, especially if they’re the one who knows best.

I’ve also noticed that some of the loudest opponents of self-diagnosis/assessment are those who are privileged.  Those who live in countries where professional evaluation is free.  Those who were born in the “right” eras, after the diagnostic criteria had been refined into something recognizable.  Those who are the “right” gender or had well-to-do parents.

And let’s poke at the elephant in the room: another category of staunch opponents consists of those who make their money off of providing professional evaluations.  It’s a little silly to say “here’s a huge list of traits” but say to someone who fits 95%+ of them, “oh, you’re not qualified to say you’re autistic because you don’t have a piece of paper (from someone who has never met you and doesn’t know you from Adam) because you’re not a Professional”.

Whatever.

Know thyself.

It’s like being LGBTQIA – if you are, you are.  You either see the traits in you, or you don’t.  You identify that way, or you don’t.

Be honest with thyself (which also goes for those with financial stakes in the official diagnosis market).

F–k the elitists; they’re ignorant.

If your Asperger’s/autism spectrum status is self-determined, I don’t give a shit; you’re still–and will always be–welcome (and legitimately autistic) in my book.

โค

โค

โค

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57 Comments

  1. While I would recommend that people who have self-diagnosed as autistic get that self-diagnosis backed up I would not say that failure to do so invalidates the self diagnosis. I am also awarte that waiting times are often ridiculously long (in the county of Norfolk, England the AVERAGE wait is in the region of 2-3 YEARS). As your blog always emphasises, the true experts on autism are us autistic people.

    Liked by 4 people

    1. Amen, dear friend! ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ. I recommend a formal DX if possible, although only if needed for confirmation, peace of mind, accommodations, etc ๐Ÿ˜Š๐Ÿ’™. The waiting times are so sad! That’s a significant amount of time. Thank you so much for adding your voice ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ’ž๐Ÿ’ž

      Liked by 2 people

  2. I can see you advocating for individuals with Asperger’s and Autism on a global scale. Actually, being on tv educating people and fighting against injustices faced by people on the spectrum. I find it irritating too that you must go to a medical professional who barely knows themselves to be officially diagnosed.

    Liked by 4 people

    1. Thank you for your encouraging words! ๐Ÿ™‚ I take it as a compliment that you can see me doing that, and I thank you so much for that โค I, too, find it irritating that one must bow before a gatekeeper to be granted an official piece of paper that simply re-states what one already knows (but manages to frame it in a much more negative light, at that!). I think that if one examines the traits listed on the websites and in the books on Asperger's/autism, especially those written by people on the spectrum, and identifies closely with those traits, finding themselves nodding and saying "yes! Me too!!", then I think they have a right to identify (call themselves) Aspergian/autistic if they so choose ๐Ÿ™‚ โค โค

      Liked by 1 person

  3. I took a online test in 2011/12 I got a high score but dismissed it. I went to the doctors and got told I was suffering from Depression/Anxiety and got meds to deal with those conditions. I’d been diagnosed Depressed/Anxious off and on since I was in my early 20’s

    in 2014 I start to question and did more research. In mid/late 2014 I went back to the doctors with my findings. I got a “yeah well you MIGHT be.. does it really matter?” I said yes and reluctantly I was put on the waiting list for a formal diagnosis. In December 2016 I was diagnosed as on the autistic spectrum.

    I was 46.

    Liked by 6 people

    1. Oh wow ๐Ÿ˜”๐Ÿ˜”๐Ÿ’. I’m so sorry to hear that your journey was so arduous ๐Ÿ’ž. And to be stonewalled for so long! And second-guessed (“does it really matter?”) ๐Ÿ˜ก. And those are the same people who say WE lack empathy! They’re obviously missing even more if they asked questions like that ๐Ÿ’Ÿ๐Ÿ’Ÿ

      Liked by 2 people

      1. Honestly? I don’t really know yet. Sounds terrible, but sometimes I hate it and yet sometimes I embrace it. I’ve not really made it part of myself yet. I’m still realising the self image I made over the last 46 years wasn’t really me and I have to make a new self image with the extra ingredient of autism added to the mix. Before I would have a bad time and think “some day I’ll be cured of this” and now I know that I’ll NEVER be cured of this which saddens me.. but then I think “Ok, so I’ll never be cured but at least I know now WHY I’m having bad times and can protect accordingly” so I’m a bit up in the air about the whole thing.

        To be honest I don’t think of myself as Autistic yet. I feel like it’s an outer layer I’ve added. It’s not part of me yet. Like a new pair of spectacles, you need to wear them for a while before they become part of your face. I need to wear my autism for a while and get used to it.

        Liked by 4 people

        1. I hear ya โค For the first several months, the realization of being on the spectrum was so life-changing that it was actually my first thought when I woke up every morning. It was hard to believe. Everything I thought I knew about autism (some, but all of it wrong) and Asperger's (even less–very little) was flipped on its head. My whole world got turned upside down, too. I would recite the words "I'm an Aspie" and "I'm autistic" over and over again. The trait lists fit me so well that I was absolutely 100% certain that I was, even before I was formally diagnosed, but the realization struck me such that I was dumbfounded. It was indeed like a new pair of shoes that took a while to "break in". I can empathize with you, my friend โค

          Liked by 2 people

    2. I hate doctors. They think they’re know it all. I keep asking my daughter’s pediatrician if we should put her on the CFGFSF diet. His answer: “There are not enough studies to confirm those diets work.” Hallo??? When was the last time he checked the American Pediatrics Association web site? They’re clearly looking into it after hearing from so many parents who swear by the diet. I didn’t give a darn and stopped giving diary products to my daughter. In ine week, just one week, she started to make sounds that she had long stopped making. She engages more with other people. She’s a different child. She’s been out of diary products for almost 3 weeks now. Her stupid father gave her cheese yesterday and we had a meltdown.

      Most doctors are a pain to deal with.

      I’m sorry they ignored you. I could swear: All they want to do is put people in pills.

      Liked by 2 people

  4. Great post my Dearest Dude ๐Ÿ˜˜๐Ÿ’ž ๐ŸŒน! I’m NT so I may be “out of my lane” here but I don’t see what self-diagnosis takes away from anyone. Autistic people have enough problems just trying to *live* in the loud, bright, smelly world without being denied their experience for lack of a piece of paper.
    Ok, ally stepping back๐Ÿ˜œ๐Ÿ˜๐ŸŒท๐Ÿ’๐Ÿ’ซ๐ŸŒ 

    Liked by 8 people

    1. Awww you are too kind! You’re a key member of my own personal “tribe” (not to mention an amazing person with valuable viewpoints!), and of course, I’m happy for you to chime in anytime! Your perspective is always, always welcome here ๐Ÿ˜˜๐Ÿ˜˜๐Ÿ’ž๐ŸŒท๐Ÿ’Ÿ๐ŸŒบ๐Ÿ˜Ž๐Ÿ˜๐ŸŒŽโœจ๐ŸŒ…๐ŸŒˆ

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        1. Who needs words? You say it so perfectly with emojis! I get the biggest (physical, offline!) grin when I see your comments ๐Ÿ˜๐Ÿ˜๐Ÿ˜๐ŸŒŽ๐ŸŒˆ๐ŸŒบ๐Ÿ’Ÿ๐ŸŒ…๐Ÿ˜Žโœจ๐Ÿค—๐Ÿค—๐ŸŒท๐Ÿ’ž๐Ÿพ๐ŸŒด๐ŸŒต๐ŸŒน๐ŸŒธ๐ŸŒผ๐ŸŒป๐Ÿป๐Ÿป๐Ÿพ๐ŸŽณ๐Ÿš€๐ŸŽ†๐ŸŒ„๐Ÿ–๐Ÿ๐Ÿœ

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  5. Hear, hear. The only thing I would say in favour of official diagnosis for myself (2 year wait in my area, East Yorkshire, UK, for NHS, so we paid privately, the total was ยฃ1250) was that although I scored high on the aq test (42 when I did it myself, 46 when my immediate family provided input), I couldn’t believe it, I didn’t want to believe it. It felt like admitting that my 56 years up to that point had been a big fat lie. And it made me feel defective and broken. While I was able to dismiss it, brush it away, I could close my eyes and not research further. Which left me stuck and unable to move on from a very traumatic event that had triggered the initial “realisation” that I don’t see the world the same way as most others. I needed to know, officially, in order to accept myself fully for who I really am. And since the traumatic event happened at my workplace, diagnosis and disclosure to a select few people there has gained me some valuable support and accommodations should I feel the need for them. I have 3 named people I can go to at anytime for help if I need it, and it’s allowed my workplace to give me a higher level of protection from bullying (which had been a contributory factor to the initial incident). Having said this, that’s my story, my reasons, and if someone can happily accept self identification, then that’s fine by me. I can’t quite imagine anyone would really want to identify as autistic if they aren’t. The potential for prejudice and negative judgement is still very high and although I’m now much more at peace with my autistic self, I still know I have to keep it quiet in many settings.

    There will always be people on the edge of extreme attention seeking, but they will be a small minority and the fact is, most autistic minds are capable of a greater level of objective and evidence based logical thinking than the average NT mind, and I believe accurate self identification is very possible.

    Liked by 7 people

    1. Amen, luv! ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ. I can relate to this so much. Ouch, private costs a lot there, too! But the wait time for public is so long ๐Ÿ˜Ÿ. Damned if you do, damned if you don’t, eh?

      Yep, my experience is similar; while I felt defective and broken before DX, practically all my life, I actually felt absolved/vindicated by the self-realization. But of course, I wanted to corroborate my findings with a professional. So I found one months later, and asked if I could go under a pseudonym to avoid any mandatory reporting and the effect it might have on my license/work (now or in the future). ๐Ÿ˜Š๐Ÿ˜Š. And he said yes, so I underwent evaluation and got my formal DX. But, like you said, that’s just my story ๐Ÿ˜Š๐Ÿ˜Š

      I’m so, so glad you have the select few trusted people you have. What a wonderful support system! ๐Ÿค—โค๏ธ

      I will always, always accept someone else’s genuine self-identification. At face value, no questions asked. That’s my pledge and promise to anyone and everyone who genuinely self-identifies. Who is anyone else to say otherwise? ๐Ÿ’œ. Some people tried, back before my formal evaluation, but really, the psychologist (a great guy!) readily confirmed my suspicions, and agreed with me, being as objective as he possibly could. He didn’t tell me anything I didn’t already know. I didn’t expect him to. He got me my letter of accommodation, should I need it. I’m grateful to have the corroboration, but I wouldn’t say it’s necessary for all. Some people need to have it, some don’t. What’s important is that they feel comfortable with who they are. Because everyone matters ๐Ÿ’™๐Ÿ’œ๐Ÿ’ช๐Ÿผ

      Liked by 2 people

  6. Yes!!!! Thank you, thank you, thank you!๐Ÿ’“๐Ÿ’“๐Ÿ’“๐Ÿ’“ I have dealt with some snideness over my self-diagnosis, but, to echo you, are they going to pay the $2000-$5000 to get me a piece of paper proving what I already know??? And *how* do I know? Years of digging, test-taking and retaking, because I just have to exhaustively research everything, especially something this important, being mislabeled and underserved by countless therapists, not to mention raising my autistic beauties all the while. I *think* I know what I am looking at.๐Ÿ˜‹๐Ÿ˜‚ lol. And, where some do seem to look for attention, that is so not me! ๐Ÿ˜ฎ I’ve gone to great lengths to be anonymous, in fact, because attention was so torturous. I can’t believe some folks can treat autism like an elite club they only include you in if you can produce their version of “credentials”. ๐Ÿ™„You know, I was almost missing social media the other day. *Almost*. Not so much now! ๐Ÿ˜‹

    Liked by 4 people

    1. Exactly, dear sister! Exactly. ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ. And so many of the stories of the people I/we know are practically identical, only small details changed ๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜โค๏ธ

      Liked by 2 people

  7. You raise some excellent points, Laina, especially about unintended consequences of a formal diagnosis. In Australia, mandatory reporting within the medical profession means many medical practitioners avoid a diagnosis rather than seek medical treatment from their professional peers.
    The issue about objectivity is also important, as a pathologist, I have to regularly explain that diagnostic testing, especially serology and to a lesser extent, nucleic acid amplification, are imperfect and depend greatly on the prevalence of disease as well as the sensitivity and specificity of the in vitro diagnostic device. Likewise, histopathology relies on the subjective eyes and brain of the anatomical pathologist.

    Liked by 4 people

    1. Thank you so much for sharing your insight! Wow! If I had a chance to choose another speciality, I would definitely choose pathology. Not buttering you up, I promise; it has always fascinated me ๐Ÿ˜Š. You’re exactly right; some conditions are under mandatory reporting here in the US, too, although I’m not sure Asperger’s is among them. I do know that that’s the general direction the US is moving, though. HIPAA (our “privacy” healthcare laws) were actually not about patient privacy at all; they were all about being able to share more of your health information with insurance companies, and if we go single-payer, that’ll make it even worse. The “P” in HIPAA doesn’t stand for “Privacy” like so many think it does; it stands for “Portability”. Your scenario is exactly why I got my diagnosis under a pseudonym (middle name + maiden). Because that scenario you describe is totally accurate, in several parts of the world ๐Ÿ˜Šโค๏ธ

      Liked by 2 people

      1. While the regulations here are designed with patient safety in mind, that is, safety from a medical practitioner who may not be safe because of their illness, the difficulty is in the nuancing. The legislation and regulation are very cold and sadly there are many in our profession who read the first few paragraphs from a directive and just assume anyone they diagnose with reportable conditions must be reported. That isn’t always the case.
        Our health insurance system is starting to move to your type of system and I worry about that. In a day and age of affordable genomics, I worry about the connection between a laboratory test and an insurance company which doesn’t take into account an individual’s personal circumstances and the real actuarial risk they may or may not pose.

        Liked by 4 people

        1. Yep, I’ve heard that from several people in different places. My sister in Canada, some from the UK (although not as much), and so on.

          The insurance companies are horrible and yes, genomics especially are a concern. I recommend my patients do their 23andMe, so that we can work with the data in ways to improve their health, but I recommend they do it under a pseudonym, and I don’t work with insurance companies (I’m private pay only), for the very reason that they’ll misuse the data we uncover. (Most Americans don’t realize that every time they submit something through insurance or try to involve insurance in any way, they’re giving up a LOT of privacy, giving them info that can be used against them later, at any time. ๐Ÿ˜ณ)

          It’s sad to see the world move in the worst of directions ๐Ÿ˜”. I was hoping they would learn from our (huge) mistakes ๐Ÿ’™

          Thank you again for such amazing information! I enjoy reading your comments very much ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ

          Liked by 3 people

            1. In turn, I thank the readers of this blog for y’all’s sharing, support, humor, heartfelt stories, and all around excellent conversation ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ’Ÿ๐Ÿ’ž๐ŸŒˆ๐Ÿ˜๐Ÿค—๐ŸŒŽ

              Liked by 3 people

  8. You’ve done another wonderful post! Thank you so much for this. It’s very hurtful when people just can’t or won’t understand, but in the end, it’s YOU knowing who you are, as you say, that truly matters. This is one I’m passing on to my (also Aspie) counselor!

    Liked by 3 people

  9. Absolutely wonderful post. This covers so much and so very well.

    I found the book “Am I Autistic?” by Lydia Andal very helpful. It meant the world to find out that so many traits I had previously thought of as random, uncorrelated “weaknesses” or “weirdness” (internalized judgments from outside) could potentially be explained by one over-arching answer. And thank you a thousand times over for pointing out that we can, for the most part, actually trust our own minds on this.

    Again, absolutely wonderful post. Thank you for writing and sharing it.

    Liked by 6 people

    1. Yes! ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ. I love that book, and I found it helpful, too. I’m glad you did as well! Isn’t it amazing to know that no matter how “weird” or alone we may feel, there’s almost always someone else in the world who is experiencing a very similar situation? ๐Ÿ˜Š. Thank you so much for your kind words, friend ๐Ÿ’ž๐Ÿ’ž

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  10. Love this. Well said. I think it goes to the misconception about the autism spectrum. There are people out there who still believe, you can only be autistic if you are unable to communicate and function, ie the more server end of the spectrum. People dont always realise how long and complicated the spectrum actually is.

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  11. Fortunately these discussions on social media completely pass me by, because I’m an old fogey and don’t know how to use hashtags…Also as part of my self-care programme, I haven’t been on Twitter much lately.
    It just seems one of those conflicts that bubble up again and again. Many people have already gone over the arguments for getting an official diagnosis and those for not getting one, but it seems worth repeating them. For myself, I find posts like yours validating and helpful.
    Personally, I don’t think I would try to get a medical diagnosis. I don’t need it for anything practical, and I just don’t have the time and the energy to fight for it. (Maybe there would’t be a fight, but the chances are that there will.) I also don’t want to go on record as having a mental disorder. Maybe I’m paranoid, but as an EU citizen living in Brexit Britain, I’d be reluctant to hand the powers that be any more sticks to beat me with. Only the paranoid survive!
    What I am considering is getting a non-medical assessment from someone like Sarah Hendrickx, only to reassure myself that I’m not making it all up. That would also furnish me with some sort of back-up if I should ever find the courage to “come out” and people don’t believe me. Just something to say “it’s not just me who thinks this, here is an expert opinion”. For my purposes, that is all I need.

    Liked by 5 people

    1. Little Sparrow, I can relate, my friend ๐Ÿ™‚ Minimizing my time on social media has become part of my self-care backbone, too. I duck in for a few minutes every few days to a week or so, and then I duck back out again. Self-care is so crucial, and I smile widely to see that you’re doing it, too โค

      The social media (especially Twitter) argument gets old. I cannot understand why, after so many rounds of these arguments, some people still refuse to accept someone's self-assessment. I mean, what right does someone else have to deny someone else of their own experience?! I cannot count how many hours, days, weeks, etc, I spent gazing at the trait lists, feeling so grateful that FINALLY SOMEONE understood, there were other people out there like me, I was not somehow flawed or broken, and I could actually begin to heal! Tears spilled over, many many times. And then how completely PISSED OFF LIVID I was to read some of the anti-self-DX comments on Twitter. How dare they?!

      I don't think you're paranoid, luv–not at all. When I got my formal DX, I did so under a pseudonym for the exact same reasons you mentioned! With the autism spectrum persistently included in the DSM, a diagnostic list of "mental disorders", the overall attitude is that we're "mentally ill" just for being autistic, and the rights and freedoms of the so-called "mentally ill" are in constant periodic (I know that sounds like an oxymoron) jeopardy. I did not want anyone to be able to search my name and find out my autistic status – it's not that I'M ashamed of it (quite the contrary) – but the cultural attitudes have a lot further to go before I feel comfortable "coming out" to the world in general as autistic. I certainly wouldn't want this info to be available to powers that be! (For the simple fact that such a label could become a huge liability under a tyrannical state). โค โค

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  12. Lack of social help or acceptance, over privileged individuals vying to be ever more over privileged, using either an official diagnosis or an unofficial one to exclude or otherwise blackmail, misdiagnosis and disruptive drug pushing… it’s an ugly world. Perhaps best kept at arm’s length to those in that path.
    I hope you are able to continue advocating, because you are needed!

    Liked by 3 people

  13. I agree with so much you said in this post. The so-called professionals who don’t live it, the ones who observe your child for just a couple of hours because of a custody battle and they think they know your child better than you (my case,) encapsulating everybody under the same category, the associated cost of a diagnosis and therapy, and so much more.

    I don’t like that they call it disorder. There’s a ring to that word that doesn’t sit well with me. I just think that am Autistic brain is wired differently and does not make it any less capable than a “normal” brain. However, I don’t have the knowledge to say that it shouldn’t be declared a disorder. Would you mind my asking you to elaborate on that?

    Amd completely agree with how they automatically treat people differently once diagnosed. I encountered that myself. (I explain more in my new blog that I started just to talk about Autism, my daughter, and me.)

    Liked by 1 person

    1. Thank you so much for your comment! I agree with you wholeheartedly – I don’t like the term “disorder”, either ๐Ÿ˜Š๐Ÿ’œ๐Ÿ’™

      My perspective is that it’s what I call a “neurological orientation”. One is born this way, the brain wiring is different but not “wrong” or “defective”, and yep, there are lots of misconceptions. We’re all different ๐Ÿ˜Š๐ŸŒˆ, with different abilities at different levels. (I don’t mean to imply “function” labels like “high/low-functioning”, because that’s another misconception that is falling out of favor among many in the community, for many good reasons ๐Ÿ˜Š.). Once one is born this way, the neurological orientation is not going to change. It’s like running a different operating system than the majority is all ๐Ÿ˜โค๏ธ๐Ÿ’™๐Ÿ’œ๐Ÿ’š

      Liked by 1 person

  14. Thank you so much for taking the time to respond. I agree with everything you said above. That’s exactly how I feel about it. When my daughter was diagnosed, I immediately figured that I needed to find a way to understand or learn how she sees things. Autism or not, we all have our own way of understanding the world that surrounds us. I also want to understand the best I can in order to stop doing or minimize things that might be uncomfortable to her. It’s like food allergies. I have a few. I have to cook differently so my allergies don’t trigger. I just avoid ingredients that I’m allergic to. I need to learn what bothers her or why she reacts the way she does about certain things so we can find a way to cope or avoid them completely. It’s not right or wrong. It’s just different.

    Thank you once again. ๐Ÿ–’๐Ÿค—

    Liked by 1 person

    1. You’re absolutely welcome, dear one! I love hearing your thoughts – your analogies are excellent! I also completely agree with your perspective! I echo what you wrote – I don’t need to say anything more, because you nailed it ๐Ÿ™‚ ๐Ÿ™‚ โค

      Liked by 1 person

  15. Completely agree 100%! There is snobbery in so many things and this seems to be yet another. Sadly I felt I did have to get an official piece of paper before I thought other people would accept my own diagnosis. And that annoyed me that I felt that my own opinion wasn’t good enough (that gaslighting again). I’ve seen on a lot of forums this exact thing going on and I’ve nearly bitten my tongue in two trying to restrain myself. But i think you are right, so many will assume you are attention seeking, band wagon jumping or just making it up unless some official has given you the nod with what is only their own opinion.

    Liked by 1 person

    1. Exactly! ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ. To me, those responses (“oh you’re just looking for attention” or whatever) reflect and reveal much more about the person making the comment (assumption) than it does the Aspie/autistic person themselves ๐ŸŒบ๐ŸŒŸ

      Liked by 1 person

  16. I’m not sure exactly when I knew my kiddo was an aspie. I just knew she was different when I’d see her interacting with other kids. By the time she reached her fifth birthday, I was sure. I didn’t need a diagnosis. Though perhaps her life in school would’ve been easier, certain events could’ve been explained better to her teachers and all that. Her aspie “trait” in my opinion was a bonus to her school life. Language/Reading seemed to be her thing. It actually put her way ahead of her class for her first few years. In everything else there was a huge struggle and I had to do a lot of research to help her reach goals, to understand what it is she’s going through. Until it affects her life detrimentally, I’ll put off getting that label on her. Yet in the meantime, I know the label is there. Part of me wants the diagnosis, to what? To prove I’m right? To give her a reasonable excuse when shit hits the fan at school? At first I didn’t mention to anyone my suspicions, then at some point I gave up giving a shit. This was my kid, who I was extremely proud of. She had to work twice as hard as most on the little things, being her mum, I was not going to shit up anymore. Not for attention, but for shedding light on a label topic. Im glad you wrote this. And I’m glad I got a chance to read it. Thank you. Xx

    Liked by 1 person

    1. Thank you so much for your comment! ๐Ÿ˜Š. I love reading about the perspectives of parenting Aspie kids, especially when the parents are quite enlightened and open, which you are ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ. I think your decision to postpone getting a formal diagnosis for the time being is really wise ๐Ÿ‘๐Ÿผโค๏ธ. You know the truth and so does she, and that’s all that counts for right now (my opinion only ๐Ÿ˜‰); nobody else has to know until there’s a definitive reason. Kind of like a “need to know basis” ๐Ÿ˜‰. Your heart and mind are both in the right place! I admire you ๐Ÿ’—๐ŸŒท๐Ÿ’—

      Liked by 1 person

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