Autism didn’t ‘steal’ me

Like I mentioned in a recent post, April is probably going to expose my Activist Face.  Not every post will smack of activism.  But I reckon that a greater portion of them will than is typical for me.  I think it’s possible that my subconscious is railing against the backdrop of blue heaped upon our fields of vision for a month out of every year, and my instincts tell me to issue a haughty retort.

It makes me shudder, more than a little, when someone makes the remark that autism “stole” their child.  They blame vaccines.  Or environmental chemicals.  Or maybe the age of their partner or themselves when their child was conceived.  Or perhaps mom took too many over-the-counter pain relievers during pregnancy.  Or maybe it’s a mystery.

But they believe that someone or something took their child away, and with him/her, the accompanying hopes and dreams, and maybe even their future, damning them to a life of therapies, special education, and round-the-clock caregiving, for life.

And they’re looking for someone or something to blame.  Pin the tail on the donkey.  Solve the puzzle.

And, almost predictably, the puzzle piece became the infamous logo, used by a number of autism-related organizations.

Top secret: most of us, the people on the Asperger’s/autism spectrum, despise the puzzle piece.

To me, I’m not missing any pieces.  I’m not even a puzzle to be solved. To me, it’s the world that is confusing.  They seem to be missing a few pieces.  Like the fact that we’re whole, valid, complete human beings, just as we are.  That maybe, nature knew what it was doing when it formed us.  That maybe, the great mystery is why we’re here.  And maybe, how we could improve the world and the quality of life for all of its inhabitants.  That perhaps, we “actually belong here, having been put here for a reason.  But the world is missing our voices.  Or rather, it’s turning a “blind eye” to them.  All while droning on about missing pieces.

Life, it seems, is not without a sense of irony.

I was born autistic.  It was predetermined somehow, in ways we haven’t yet uncovered.  It’s OK with me if that remains a mystery.  Some mysteries are beautiful, and meant to remain mysteries in order to be preserved.

Nature, it seems, has a few closely-guarded trade secrets of her own.

If autism is set in motion at or before birth, then we know that it doesn’t come intruding in the night, suddenly grab children in their sleep, and hollow them out, leaving a shell behind.

If a child is found to be autistic, they always were.

Autism is not a boogeyman; it’s a different operating system–at least, the way I see it.  It’s not Bigfoot or the Loch Ness Monster.  It’s not a tragedy.

The child is still there.  They always have been.  And they’ve always been autistic.  And they’ll always be there.

Autism didn’t “steal” me.

Rather, it made me who and what I am.  It preserved everything it means to be human.  I feel, I laugh, I cry, I hug, I think, I dream, I have goals, I play, I work, I call certain people on the phone, I email, I text, I engage on social media, I create, I make jokes, I make friends, I hang out with those friends (sometimes), I talk, I read, I write, I have hobbies, I learn, I love art, I cuddle with my cats, I take in the world around me, I live, I breathe, and I someday, I will die.

Practically all of the above is true for the vast majority of those of us on the Asperger’s/autism spectrum.

Do I sound “stolen” to anyone?  Do I sound incomplete?  Do I sound broken?

Or do I sound human?

Do I not deserve to live among everyone else?  Do I deserve a place in this world?  Do I deserve to be treated any less?  Was I born of a lesser god?  Am I a second class citizen?  Do I sound like I need treatment, or to be cured?  Do I come across as someone whose birth needed to be prevented, someone who never should have happened?

I think not.

But then again, I’m probably biased ๐Ÿ˜‰

Autism isn’t a thief; it’s a different way of being.  There are some who disagree with this perspective.  Those who do, tend to fall into one of two predicaments: typically, they are either completely ignorant (and may not truly know any actually-autistic people–which is possible even if their own child is autistic; it’s possible to give birth to–and live with–someone without actually getting to know them), or perhaps they’ve been diagnosed as being on the spectrum themselves, and likely at a younger age,  but have been indoctrinated into the pathology-based, ginormously-judgmental medical model that insists that we are “afflicted by” autism, and they may be unable to let go and embrace a new paradigm.

I think nothing less of the people in either of those situations above.  They’re entitled to their own opinion, based on their own experiences.

But that doesn’t necessarily make them correct.  It might be correct for them, and for them, that’s what counts.

But after interacting intensely and often with a reasonable sample size (1700+ people), I can comfortably say that that viewpoint is far less common.  It’s certainly not universal.

Autism couldn’t have stolen me.  Because, like everyone else on the Asperger’s/autism spectrum, I’m right here.

โค

โค

โค

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77 Comments

  1. Ahhh, the “stolen” child…. Parents need to understand that a child is a person. That tiny little person may or may not share anything with the parents except genetics. Our jobs as parents is to protect & nurture the tiny person we were gifted with. Help them grow & thrive. If autism steals anything, it’s that parent’s delusion that their child is supposed to be a “mini me” for them.
    Even being high-support, my King Ben is 100% whole and 100% awesome.

    Liked by 5 people

    1. You. Are. An utterly amazing. Grandma. ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ. This! Everything you said. King Ben is an incredible–and incredibly lucky–young man ๐Ÿ˜˜โค๏ธโค๏ธ

      Liked by 1 person

  2. Oh gosh, I love this so much. I’m feeling so raw about this month. I was hoping just to be the activist too, but somehow I’m really struggling. I think the fact I’m going through a stressful time at work and am having a few health problems isn’t helping. I’m really struggling with a lot of the rhetoric I’m seeing. This post is PERFECT for my mood right now (I’ll probably reblog later, but I’m having issues with WordPress on my iPad at the moment…).

    Liked by 1 person

    1. Thank you very kindly, luv! I’m really really happy you liked it! So very sorry that recent times have been rough for you (I’m right there with you!). We’ll get this thing turned around ๐Ÿ’ช๐Ÿผ๐Ÿ’๐ŸŒบ๐Ÿ’ž

      Like

    1. I do ๐Ÿ˜ž. That SO sucks ๐Ÿ’”

      My thinking (and this is just my own) is that it’s the uninformed people who make the rules that stole your dreams because of their misconceptions about Asperger’s/autism. It’s not you who is broken; it’s their viewpoint that’s wrong. And the way I see it, it’s dead wrong. I’m trying to figure out how this can be changed. I know it can be; it’s been done already with sexual orientation. It was realized not to be a “mental illness” or even a “disorder” after all. But we’re not there yet, and it might take a while before we get there, so I realize, empathize, and sympathize with the unfortunate fact that this doesn’t help anything now ๐Ÿ’๐Ÿ’ž

      Liked by 1 person

      1. True, but I’m not getting my hopes up. We see how long it took with sexual orientation. The reality is that it ain’t being stricken from the DSM any time in our lifetimes. We’ve already lived about half of our life expectancy so I fully suspect we’ll both be long gone by the time they wise up (that is, if they do).

        Now, that’s not to say there are thing I’d choose to change about myself even if I were allowed to fly. I absolutely could do without my fiery temper, the meltdowns and an overall lack of ability to feel emotions other than negative ones (which might be more along the lines of a clinical depression as opposed to autism spectrum).

        Liked by 2 people

        1. I definitely agree – clinical depression sounds more like it.

          As a sidenote, I find it peculiar that the Powers That Be ruled that it’s ok to be depressed (as long as it’s controlled by medication) but Asperger’s and autism (which are simply different ways of thinking) are out? In other words, you can be sad and potentially self-harming (not to mention the unexpected reactions some people experience on psychiatric medications) and be able to fly a plane, and that’s deemed safer than having a neurotype that simply thinks differently?

          My theory is this: depression is so prevalent among the general population and so many people are taking antidepressant drugs that it’s likely to have also “affected” those who make the rules. To prohibit depressed people from flying planes would have been essentially to destroy their own dreams, so they couldn’t have that; they had to make an allowance for depression, lest they strip themselves and their own relatives of eligibility.

          But autism? Nah, all they know about that is what is portrayed in the media and “charity” / “support” organizations, which, of course, feature the “worst case scenarios” and “horror stories”. They don’t look at or listen to people like you and me, and so many others out there who would be perfectly capable given half a chance.

          And because Asperger’s/autism is so much less common than depression, there isn’t a big societal push to remedy this problem. It’s not an issue of risk or liability like they think and say it is; it’s a numbers game of prevalence. At least, that’s how I see it ๐Ÿ’ž๐Ÿ’ž

          Liked by 1 person

          1. It’s very possible. I mean clinical depression is estimated to affect like what? 20% of the population? Or put another way, 1 out of every 5 people? This is not to say I think clinical depression should be disqualifying – it really shouldn’t. Being clinically depressed and lacking a moral compass (i.e. you’d intentionally down a plane full of people for the sole purpose of ending your own life and just regard the others as “collateral damage”)? Yeah, that probably should be disqualifying.

            Well, it just so happens that I do have a moral compass and would never do that no matter how shitty I feel. If at some point I choose to end my own life (which to be quite frank I believe is my indisputable right to do and same of everyone else – I do not support the state/government trying to stop someone from committing suicide) I will do so in a way that doesn’t bring anyone down with me. “Danger to oneself” is about the biggest load of bullshit ever peddled by the government. Danger to others, yeah I can see that.

            I have no idea and I don’t pretend to. Whatever the case, I just know that in all likelihood a social paradigm shift on this issue will not happen in my lifetime so I refuse to get my hopes up. If it does, well then, that’ll be a pleasant surprise but it’s still too late for me as I’ll be too old to start an airline career (by the time I get all my ratings, 1500 hours of flight time, etc.). Bleh.

            Liked by 2 people

          2. I totally agree – depression shouldn’t disqualify anyone; not everyone who’s depressed would think of exiting their lives, and not everyone who thinks about it would actually follow through with it, nor would the *vast* majority even dream of involving anyone else, namely airline passengers ๐Ÿ’–

            And I think that given what the Asperger’s/autism spectrum actually is and what it entails, it should be even *less* of a disqualifier in a psychological sense. We’re perfectly able to do what’s necessary to fly safely and in fact, the large majority of us would make damn fine pilots ๐ŸŒบ

            Yeah, I agree – “danger to oneself” is total bullshit. In a sovereign nation, especially one that emphasizes individual rights, nobody should have dominion over the individual except themselves. That’s what the “land of the free” and all that is all about. In my opinion, yep, that also includes the right to end one’s life, if it truly comes to that. I do support assistance in that area, because who am I to say someone can’t do that? I don’t have to live their life. I’m not the one walking their path and facing their circumstances. It’s not my place to say yay or nay. ๐Ÿ’š

            I agree, too, about not getting one’s hopes up, at least not until there’s a tangible reason to. I never say never, but I also don’t believe it until I see it ๐Ÿ’ž

            I’m standing with you, bro. I can’t say that I know how you feel. But I can say I support you and can understand your struggle on a certain level โค๏ธ

            Liked by 1 person

  3. Reblogged this on The Misadventures of Mama Pineapple and commented:
    This is so perfect. I have to confess, I’m feeling pretty raw about this particular month. Stressful time at work, minimal downtime, the comparative recentness of my own diagnosis…whatever it is, I’m finding it far less easy to be the activist I wanted to be at this time. But this post sums up my feelings so well.

    Liked by 2 people

  4. Lovely โค
    I'm happy you explained your life as an autistic. All the joys and humanity (although it shouldn't be needed). The "autism has stolen…" narrative disgusts me so much. We'll counter it, we're getting our activist faces on and we're gonna be awesome!

    Liked by 2 people

    1. Yes it will! Awesome!! ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ’œ๐Ÿ’–

      Like

  5. Reblogged this on ioinviaggio and commented:
    Liana, una ragazza autistica, scrive di non sentirsi il pezzo mancante del puzzle della vita, ma che tutte le persone, autistiche e non, fanno parte della creazione e che sono stati messi in questo mondo per un senso preciso:

    Mi fa rabbrividire, piรน che un po ‘, quando qualcuno fa l’osservazione che l’autismo ha โ€œrubatoโ€ il suo bambino. Danno la colpa ai vaccini. O a sostanze chimiche ambientali. O forse all’etร  del loro partner o di se stessi quando il loro bambino รจ stato concepito. O forse la mamma ha preso troppi antidolorifici nel corso della gravidanza. O forse รจ un mistero. Ma essi credono che qualcuno o qualcosa ha preso il loro bambino lontano, e con lui / lei, le speranze e i sogni che li accompagnano, e forse anche il loro futuro, e che sono destinati a una vita di terapie, di educazione speciale, e ad essere seguiti da caregiver per la vita. Essi stanno cercando qualcuno o qualcosa a cui dare la colpa. Attacca la coda all’asino. Risolvi il puzzle. E, quasi prevedibile, il pezzo del puzzle รจ diventato il logo infame, utilizzato da un certo numero di organizzazioni che si occupano di autismo.
    Top secret: la maggior parte di noi, la gente nello spettro autistico o di Asperger, disprezzano il pezzo del puzzle. Per me, non mi manca alcun pezzo. Non sono neanche un puzzle da risolvere. Per me, รจ il mondo che รจ fonte di confusione. Le persone del mondo sembrano mancare alcuni pezzi. Come il fatto che gli esseri umani siamo interi, validi, completi, cosรฌ come siamo. Che forse, la natura sapeva quello che stava facendo, quando ci ha creato. Che forse, il grande mistero รจ il motivo per cui siamo qui. Che forse, possiamo migliorare il mondo e la qualitร  della vita per tutti i suoi abitanti. Che forse, noi in realtร  apparteniamo a questo mondo e che siamo stati messi qui per una ragione. Ma nel mondo non รจ presente la nostra voce. O piuttosto veniamo ignorati. Tutto mentre si mormora di pezzi mancanti. La vita, a quanto pare, non รจ senza un senso di ironia. Io sono nato autistico. E ‘stato prestabilito in qualche modo, in un modo che non abbiamo ancora scoperto. Va bene con me se che rimane un mistero. Alcuni misteri sono belli, e destinati a rimanere misteri al fine di essere preservatiโ€ฆ.
    L’autismo non รจ un ladro; รจ un modo diverso di essere.
    L’autismo non puรฒ avermi rapito. Perchรฉ come ogni altro essere nello spettro autistico, io sono proprio qui. Liana

    Liked by 1 person

          1. Wow, thank you! I didn’t know you had another site – I’m checking it out now ๐Ÿ’–๐Ÿ’–

            Liked by 1 person

          2. Most of my poems were born for an autistic son, I have no sons but I had a friend that was like a son for me, but I can’t say these love words to him…even if it is just a love from a mother to a son….
            you can understand me, I think.

            Liked by 2 people

          3. Yes I sure can ๐Ÿ˜Š. Wow, how amazingly beautiful! You’re a gem of a friend ๐ŸŒน๐ŸŒท๐Ÿ’–

            Liked by 1 person

          4. Oh yes, of course! ๐Ÿ˜˜๐Ÿ˜˜. Visiting you is one of the reasons I would like to travel to Italy โค๏ธ๐ŸŒŸ

            Liked by 1 person

          5. Oh my goodness, that’s so cool!! Thank you so much for sharing this with me/us ๐Ÿ˜˜โค๏ธ๐Ÿ’œ

            Liked by 1 person

  6. Absolutely. We were created to be beautiful and unique. I never once questioned it or felt robbed when my kids were diagnosed. It just drew some conclusions that helped me understand them better-and, eventually, understand myself at long last. Please continue your awesome activist self. I am so glad for folks like you that can write the things in my heart that I can’t quite articulate at this point. โค

    Liked by 1 person

    1. Amen, girl!! Thank you for your beautiful and encouraging words ๐Ÿ˜˜๐Ÿ’ž. You rock!! ๐Ÿ‘๐Ÿผ๐ŸŒน

      Oh yeah, there’s plenty more where this came from ๐Ÿ˜‚๐Ÿ’ช๐Ÿผ๐ŸŒบ๐ŸŒŸ

      Liked by 1 person

    1. Amen about the puzzle piece! ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ ๐Ÿ˜Š

      About the girl, hmmm. ๐Ÿ˜Š. Each is different, so your mileage may vary, but I might start by stealing a glance and giving a shy wry smile ๐Ÿ˜Š.

      Depending on the context/environment and how well you know her already, that’ll influence what you do from there ๐Ÿ’ž. Conversation starters might include stuff like the current activity she’s engaged in when you see her, a comment about the surrounding environment (“wow, there sure are a lot of people out here today”) or maybe even something about your town (“have you been to the (insert main attraction here) yet?”) or something like that ๐Ÿ’œ

      My brain has been a little unfocused lately, so I’m trying to remember if you’re on Twitter; if you are and you’d like to DM me, that’s perfectly cool! We can delve deeper into the specifics if you like ๐Ÿ˜Š. Always happy to help a Neuro-brother out ๐Ÿ˜˜โค๏ธ

      Liked by 1 person

  7. I’m somewhat irritated that the puzzle piece motif was appropriated and used the way it has been. I actually rather like the image. For me, the knowledge I was autistic was the missing puzzle piece that tied all these disparate and fragmented mysteries about my life into a coherent picture. Once I had that piece of the puzzle, the rest of it began falling into place and the pattern emerged. I don’t think the problem is with the symbol, but with the way it’s being used.

    Liked by 3 people

    1. Yes!! I think that eventually we should co-opt the puzzle piece (and the color blue, dang it, because that’s my favorite color!) for our own use! Nothing about us without us, right? ๐Ÿ˜‰. I totally agree – for myself and so many others, discovering our truth has *been* the missing puzzle piece! ๐Ÿ˜Šโค๏ธ๐Ÿ’“

      Liked by 2 people

        1. Hehe yeah, I like red ok, but it can be kind of an aggressive color. Blue is much more tranquil ๐Ÿ’–๐Ÿ’–

          Liked by 1 person

  8. Well, me again, and my different angle(s)…
    When seeing autism as a spectrum, one has to realise the uniqueness of each autistic individual, and the effect of their particulars/specifics on themselves, their families, their carers. Because as much as we are inclined to see only the brighter (for ourselves and/or surroundings) side of the spectrum, we might (want to?) see less of autism’s other side, experienced extremely different by the autistic individual and/or their surroundings, when the autistic individual’s permanent or occasional behaviour becomes a major source of distress for both themselves and their families/carers.
    As I am professionally acquainted with the behavioural physiology and also the pathology aspects of the spectrum, I have seen not only the spectrum’s bright side, but it’s darker side as well, the one which leaves behind a lifetime of suffering for families/carers unable to cope with the oftentimes minute-by-minute challenges raised by autistic individuals with severe learning disabilities and/or with behavioural profiles incompatible with even the most accepting and tolerant sociological environments.
    And while I would gladly hope that no one would perceive autism as a thief, I can’t but respectfully remain silent before those parents/carers whose lifetime of suffering doesn’t deserve anything less. Because if they exercise their right to consider life as one’s inalienable right to pursue happiness, compared to the average life of a neurotypical family, theirs may seem truly different, and not in positive manner…
    It is there and then, when the neurotypical society needs to solve something which from their angle looks very much like a puzzle, in ways which shouldn’t nevertheless become neither generalising nor compulsory for those of us on other aspects of the spectrum.
    I my opinion though, we must show at least as much respect, understanding and acceptance as we expect for ourselves…

    Liked by 3 people

    1. Yes indeed! I didn’t enjoy getting hit or bit or having heavy objects thrown at my head. I don’t enjoy all the things that are broken or the holes kicked in the walls. I don’t enjoy being afraid to go out in public without at least one other adult with us for fear he’ll run away and get hurt or lost. Still, it’s not Ben’s fault. He was born autistic and he copes with life the best he can. Society needs to give families like ours more help. That’s my opinion for what it’s worth.

      Liked by 2 people

      1. Dear Gran, that was exactly my point, nothing more, nothing less. The one point which should be central is exactly what you so firmly expressed, namely that neither your precious Ben, nor any other autistic children have any fault in how they/we’ve been born. We didn’t ask for, we weren’t consulted about it, here we are nevertheless, both us and our families with a right to live to the best we can, being given at least as much as we are requested of.
        Society should regard support for any special needs from both the perspective of the individual with special needs and also that of their family/carers, who when and where necessary, carry the entire responsibility for their wellbeing. Most “civilised” societies have miserably failed so far their basic responsibilities, shamefully leaving the “problem” to charities, which mostly are accountable to no one, and therefore following agendas known only to themselves and their supporters of oftentimes unclear interests.
        You are a true hero, and should have long ago earned the respect of anyone knowing you and your life dedicated to King Ben.
        You’ve certainly earned mine, by all means ๐Ÿ™๐Ÿ™Œ

        Liked by 2 people

        1. OMG๐Ÿ˜ thank you, thank you! I’m not a hero at all. I think the teachers that *choose* to work with special needs kids are the true hero. And you’re absolutely right about society’sโ€‹ failure. It seems to be all about money. If you have it, the golden gates of access to support open. If you don’t have money, you shuffle from place to place to place, chasing that carrot on a stick. It’s shameful!

          Liked by 2 people

    2. I love your different angles! ๐Ÿ˜Š๐Ÿ‘๐Ÿผ.

      Yep, I live with one foot in each pond, the half-disability, half-superpower (depending on what kind of day I’m having lol) ๐Ÿ˜Š

      The spectrum varies from person to person, and also from day to day (or even hour/minute to hour/minute) within the same person. So yeah, each person is indeed unique, and so is each moment ๐Ÿ˜Š๐Ÿ’–

      I totally understand that raising a child whose nervous system, communication style, and even entire operating system is different, can carry its own special type of stress. And we know that it is indeed the autistic filter that collides with the neurotypical one. It’s interesting how that which the NT world perceives as a puzzle, is the very key to our own puzzle ๐Ÿ’ž

      Theory of Mind issues do occur, I totally realize that ๐Ÿ˜Š. What many NT peeps may not realize (although more and more are starting to!) is that these TOM issues actually occur on *both* sides. I’ll certainly own mine ๐Ÿ˜Š. I’m just trying to get the “rest” of the world to see that it’s not just a one-sided deal ๐Ÿ˜‰โค๏ธ

      Liked by 3 people

    1. LOLOL!! I love that!! ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ‘๐Ÿผ๐Ÿ˜‚๐Ÿ˜‚๐ŸŒŸโค๏ธ

      Liked by 1 person

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