When Do We Get to Be Autistic?

Autism, Friendship, Identity, Neurodiversity

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I’m seeing a new therapist and I’ve told her how much I like to write; last week I told her that I haven’t blogged in a while because I haven’t had the time, but this morning I told her that I’ve realized I am not writing because I don’t know what to say.

She told me that it’s important to keep doing this so that I have a voice.

So I’m going to try to say some things.

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I have a friend who is autistic and also a kind of mentor to me, someone who’s been around for longer and I look up to her because I admire her sense of fairness and the way she applies a gentle touch to fighting for social justice. And also because she has this way of leaving me with these jewels of words that I keep forever – and she probably doesn’t realize she does this, but perhaps she will recognize herself when she reads this – like when I fretted that my inability to express convincing enthusiasm would put her off and she told me, “you don’t have to do the face with me.”

And when we were talking about another autistic person who was under fire for the way they talked to other activists and she said that she was sad because she knew this person was kind and thoughtful and was being misunderstood because of their communication style, which made her wonder, “when do they get to be autistic?”

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This is a post that is not about me, or it’s partly about me, but it’s also about all of us. We’re pattern seekers, you see – we Autistics. Or maybe “pattern receivers” is a better phrase, as so often the patterns just seem to be there, revealing themselves to us. The pattern that lately reveals itself to me everywhere I turn is that it’s still not acceptable, sometimes not safe, to be Autistic in this world, no matter how much lip service is paid to awareness or acceptance.

This is about me, and it’s about all of my friends.

It’s about my friend Michelle who writes, “when I am authentic in my neurodivergent way, I see a pattern of becoming distant from friends and isolated from community.”

It’s abut my friend Ally who writes, “Pretty much every person I talk to or meet, is probably ableist and would think that people like me should be prevented from being born or should not be spoken about with accurate descriptive language because it’s uncomfortable and we all know that Big Pharma is taking over the world and just inventing stuff to medicate and don’t you know that autism is just an excuse?”

It’s about my friend A whom I won’t name without permission but who has spent hours with me dissecting what is really going on in our conflicts with non autistic people and how to balance self care with bridge building and… well. Without A I don’t know what I would have done these past few months, really.

It’s about the people at the Autism Women’s Network meetups who express how much they long to show the world what they can do, what they have to offer, what they’re good at, but struggle to attain even the most basic supports, not because those supports are impossible for others to provide, but because the people in neurotypical environments think that we should be able to just suck it up and deal with: painful lighting, overwhelming noise, fast transitions, sudden schedule changes, our inability to communicate verbally under stress.

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The awkward thing about being an autistic adult who communicates in words is that we are expected to have “overcome our autism” when we have no such goal even if it were possible (spoiler alert: it’s not). I have personally been congratulated for overcoming autism: a well meaning gesture that means nothing at all. For a time I thought this was a kind of applause for having the ability to pass, but I have learned that it’s code for “we expect you to act normal now and anything that you can’t do we will consider a personal failing.” For adults who were not diagnosed until adulthood or are not diagnosed but have self identified, this goes double.

We still ping as different, as other, as unacceptable; but everything that pings as non-typical about us is attributed to a cause that is NOT autism – it’s just a character flaw or something we are doing wrong.

– if you have social anxiety, actually you are just
—> rude, unfriendly, antisocial, self-isolating, a misanthrope, a snob

– if you have a direct communication style, actually you are just
—> rude, confrontational, aggressive, insensitive, argumentative

– if you are drawn to deep connections in conversation, actually you are just
—> too serious, too intense, a downer, socially awkward

– if you have sensory aversions, actually you are just
—> fussy, entitled, irritable, negative

– if you have executive functioning challenges, actually you are just
—> lazy, disorganized, incompetent, a complainer… or not that smart.

So the people who “just don’t see it” when you say you’re autistic or who think it’s so great that you’ve “overcome” the way your entire mind and body are designed simply because you can say words with your mouth or type words with your fingers (sometimes), definitely see that you are not like them. They’ll tell you so all the time, in their own way.

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I worry that because I fumble to express myself in a room with people but manage to find my words when I’m alone with my fingers on the keys, I will be seen as

—> disingenuous, passive aggressive, two faced, or just plain

Crazy, like those old coworkers once called me when they found my blog…

I’ve had a pervasive feeling of not being safe lately that’s been impossible to shake. I don’t mean that I have felt myself to be in physical or mortal danger, but my soul, my true self, is afraid to come out. I’m aware of being too much, too intense, too serious, too too… . I worry that owning the word disabled will cause people to see me as incompetent. I feel that asking for more help or support will cause others to think that I can’t do it at all. I can’t stop pushing myself to prove my worth through my hard work. I will wear myself out trying to earn a place in the world.

I look on others who come out to the world with powerful vulnerability, who find their strength in softness, with keen envy. I feel miles away from that. Light years away.

I don’t feel brave enough to speak. But someone told me that I should keep writing because I need to have a voice. If this is my voice, I have some things I’d like to whisper.

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27 thoughts on “When Do We Get to Be Autistic?

  1. Oh my goodness…yes to all of this. And I love your voice BTW and was so excited to see you had a new post. I often feel that way blogging too but it helps me to do it a couple times a month. I often don’t feel like I fit in with of course the majority but also most of the autistic online community ( tho I have some close autistic friends) because I am an INFJ personality type which means I am more of a feeler, intuitive and do things in such away that translates to some as not possibly autistic…but I am…and I have a tough time because sometimes i feel I ostracize both sets of community by being me…its hard to explain but the paradox of it is ever present. Thank you for writing this..Can I guest post it on my blog?

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      1. You know what…I was wondering! I also guessed that Sam was from Everyday Aspergers as both of your writings I relate to the most…and that doesn’t happen often to me! How do you find the paradoxes…? I wrote a post briefly about it once but otherwise should explore it more sometime..You can click on my link to see the post anytime. I will guest it in the next little while. Thanks Erin:)
        Kmarie

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      2. I am also an autistic INFJ!!! As a woman, I tend to find I don’t get along much with autistic men – we just are so different… Though it’s only been online that I have ‘met’ them which could play a part. But as an INFJ I find that I struggle to get close to just about anyone! However I get along with lots of people, superficially, because I’ve learnt tricks, and people see me as a good listener cause I am quiet… Of course the day I start talking (and can’t stop) people are shocked! I’ve been called eccentric (he meant it nicely though)… I’ve also been called other things, though, not so nice… Anyway, loved this article. I’ve been meaning to blog about disability… Holding back, I think I am afraid!

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      3. I am also an autistic INFJ!!! As a woman, I tend to find I don’t get along much with autistic men – we just are so different… Though it’s only been online that I have ‘met’ them which could play a part. But as an INFJ I find that I struggle to get close to just about anyone! However I get along with lots of people, superficially, because I’ve learnt tricks, and people see me as a good listener cause I am quiet… Of course the day I start talking (and can’t stop) people are shocked! I’ve been called eccentric (he meant it nicely though)… I’ve also been called other things, though, not so nice… Anyway, loved this article. I’ve been meaning to blog about disability… Holding back… I think I am afraid!

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  2. Thank you, thank you. I get paralyzed every time I think about writing a new blog post. I have so much to say but I am afraid to say it. Your words really hit home with me – very powerful.

    Liked by 1 person

  3. Thank you for this post. My 9 year old daughter was just diagnosed with extremely high functioning Aspergers last November. Due to her being able to “pass” so well, I do need constant reminders sometimes that she needs more patience and understanding from me not to be held up to the standard that a neurotypical child should have to measure up against in some areas. She needs me to allow her to be autistic sometimes, and I don’t do that enough. Thank you for the reminder!!!

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  4. I really appreciate seeing this. I was diagnosed only earlier this year;while I’m comfortable owning a lot of my traits that draw the criticisms you call out here, I feel like my concept of myself as a more-or-less competent adult has been shaken by this label of autism. Even taking into account I’m still the same person I was before I “became” autistic, it’s still thrown me for something of a loop. Thank you for sharing, I think stories like yours are going to be a big part of my adjusting to this new reality!

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    1. Self-acceptance is definitely more of a journey than a single act. It sounds like you have realistic expectations of how your diagnosis will impact, which puts you in a better position than the one I was in when I was diagnosed! I expected processing that to be easy because I already believed in autism acceptance, but I found that accepting oneself is much more complicated. Good luck and thanks for reading!

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      1. I have a long and extremely nerdy post in me about self-acceptance…certainly I’m not yet where I’d like to be on that score, but I hope I’m open to the possibility. I can definitely see how this diagnosis can be a big hit to how we view ourselves, especially when the answer may be “adapt” rather than “overcome”. I would sure love some easy answers right about now, but absent that, I think my thirty-eight “pre-autistic” years have developed some tools to help me get through this transition. If they came slowly, I hope you nevertheless found your answers to re-establishing your sense of self after learning about this other part of you.

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  5. Major applause here. THIS POST is amazing.
    I want to basically shove it in the face of every person who accuses me of all those things. Especially the lazy part. Executive Function is such a pain. Tasks are so difficult for me at times. If I don’t have a list, they don’t get done. Or if a task is told to me verbally, I’m going to forget part of it. Lists and reminders help tons.

    Oh I love this post. You’re damn good for writing this.

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