It’s okay to say autism

When I was 15, I sat down with my mother and told her that I was a lesbian. For the next couple of years my sexuality was referred to with a look, a nod, a hand gesture or, if she had to, a whispered “you know.” We’ve come a long way but it took a long time. 

When I was 23, I sat down with my mother and told her that I was autistic. She was loving and supportive but, like a lot of people, she didn’t know much about autism. Also like a lot of people, she had a negative connotation and mentioned that she wouldn’t be telling anyone. She says the word autism to me now but she hesitates each time, like she’s wondering if she should really be saying it aloud.

The Sapir-Whorf hypothesis states that language determines or greatly influences thought. Linguistic relativity is debated but in this instance, at least, I think it’s relevant. What does it do to a person when who they are inherently is stuttered over or not said at all?

Very few people in my life say autistic. There’s my wife, my autistic friends…end of list. My neurotypical friends don’t say it, don’t refer to it, probably don’t think about it. My in-laws are open, accepting and accommodating and even they avoid the word autism when we talk about it. I feel its absence each and every time—a black hole that threatens to suck in my self-confidence and identity.

I’m as open about autism as I’ve always been about queerness. And as with my sexuality, I only ever keep it a secret when I worry about my safety—emotionally, professionally or physically. So, a lot of people know I’m autistic: my professors, classmates, coworkers, friends, family, acquaintances. And no one says autism or autistic or disabled. Why? Why don’t they say it? “You won’t catch it if you say it,” the words I repeated so often as a teenager to my mother, pop up each time it’s ghosted over.

Is it a reflection of their thoughts—that autism is a taboo subject, something that we dare not speak its name? Is it because they disagree with the cavalier way I discuss my disability, almost like it’s a normal part of life? Is it a worry that they don’t know the terminology well enough to not offend me? Do they think it’s too serious to discuss with levity? Whatever it is, it’s determining or strongly influencing my thoughts.

Sometimes I catch myself thinking that maybe it’s too personal and I should keep it to myself. Sometimes I hesitate talking about being autistic, even to people I’m close to, because it makes me feel self-conscious. I should not feel like I can’t talk about my disability just because other people are afraid to.

Autism is a big part of who I am. Sometimes I want to talk about a new special interest and how happy it makes me or I want to laugh at how terrible I am at picking out furniture because I have bad depth perception. Sometimes I need to talk about how drained I feel because I had a meltdown recently. I can talk about these things without naming autism but that erases a larger picture of who I am. By continuing to dance around it, I’m afraid I’ll continue to internalize a wrongness connected to my identity and I refuse. I fought those feelings when I came out 13 years ago and I’ll fight them now, too.

We can talk about autism. We can say autistic. It’s not taboo, it’s an everyday part of my life. It’s not too serious or sad or tragic. You won’t offend me if your heart is in the right place. After all, I still love and talk to my mom every day and she used to wave her hand back and forth to mean gay. So, you know, there’s hope for everyone. ♥

55 thoughts on “It’s okay to say autism

  1. Thank you for this post. I have had the honor of teaching children of all abilities, including neurotypical and those on the spectrum. We must come to stop viewing diversity as a disorder and learn to appreciate all life has to offer!

    Liked by 17 people

  2. I’ve had the exact opposite experience. I’m on the spectrum, and my family and I have never had any problems talking about it or naming it (there are also several members of my family, including myself, who are LGBT). It’s interesting. I wonder why we’ve had such different experiences.

    Liked by 4 people

  3. A lot of my friends and I have Asperger’s but most prefer “Autism spectrum” to “Asperger’s” while I prefer “Asperger’s” to be as specific as possible. I believe that being as specific as possible cuts away at the charge humans tend to create around some words.

    Liked by 8 people

  4. I think humans are hard wired to stick with the pack, to not stand out, to fit in. It’s a protective mechanism. There is however, that special person who is bold enough to break free and sprint to the finish line. If you are strong and competent enough you succeed. If you are faltering, you become an easy target. Stay strong and carry the banner. You seem like the type to make a positive change.

    Liked by 5 people

      1. Autism is a difficult topic to talk about because there is a lot of unknown factors that come with it. I have a son with autism and hardly ever speak about it because when you let people into your world they tend to come off as experts. A person can’t really understand what autism is unless it affects them directly. There’s a lot of pain and loneliness that comes with the topic. Trust me I know https://youtu.be/92M8TD6dLmo

        Liked by 3 people

  5. Very refreshing and honest read. Know a lot of open-minded and accepting ‘hand-wavers.’ People are told so often throughout their lives “ssshhhh, you can’t say that” when all too often what they are saying is real and valid. Thank you for sharing ♡

    Liked by 9 people

  6. Lucky for me, I don’t think I’ve ever met anyone who had a problem with saying the word ‘autism.’I am actually the one who finds it hard to tell people I have Asperger’s. I guess deep down I’m afraid of judgement, but because I consider it a personal thing I also want to tell people at the right time. I just never know when that is, so either I wait for years or I never tell them. When I’m around other people with autism or friends and family (who know I have Asperger’s) I can talk about it without feeling any shame or fear though.

    Liked by 3 people

  7. I have started following you after reading this post. Having Autism makes you different than me, and you being a lesbian makes you different than me, and in so many other ways we aren’t alike, but its why you make a fabulous read! I don’t know you, but I can probably speak for a lot of people and say I’m proud of you for boldly being YOU.❤

    Liked by 5 people

  8. I like how open-minded you are. It was great reading this. Things like that should never be accepted as taboos and there should be no boundaries put when it comes to discussing it. I think it is amazing that you wrote this story here.

    Liked by 3 people

  9. Kudos to you for a very direct no nonsense post. Thats what the neurotypical have lost. Everything is direct in this world and is merely transformed into complexities by a thing called society. Yes autism comes with complexities depending on the spectrum and anything that cannot be understood by the nuerotypical is either dealt with hesitation or a blind eye. Thats the society.. thanks to the post and various org as well as schools who brings the positivity and the negativity associated with endless taboo words in our society.

    Liked by 8 people

  10. Thank you for an insightful post. I have a different experience. My now 16 year old son is autistic or actually has Asperger’s but that diagnosis is not used anymore in Sweden. I wouldn’t mind discussing it, but it is he who does not want me to say it. Not to him and certainly not to someone else. He does not want to be singled out, very simply. I work as a teacher and many of the students who have Special Needs do not want to use the help items they have or the extra help they are entitled too. Same there. They don’t want to be singled out. All the same, if you feel that you do want to talk about it, kudos to you and you are entitled to it. Probably you have much more come to terms with it and see it as part of your personality. Personally I tend with all kind of “handicapped” or “non-typical” persons to leave it up to them. If they are comfortable talking about their disability or whatever it is, I am. But I am not going to make them feel uncomfortable if they don’t want that.

    Liked by 5 people

  11. The article really warmed my heart. I remember when the teachers at my oldest daughter’s school approached me about her having Autism when she was in Kindergarten. They looked and me and held their breaths, waiting for me to explode or cry or panic. I don’t think they knew what to do with my calmness and acceptance. This was my daughter. Even if she has autism, I’ll still love her the same. If she became a lesbian I’d love her MORE to compensate for the struggle I know she’d go through. It still amazes me that some people trip up on the subject of Autism, as if it’s a venereal disease or something. And it amazes me equally that there are brave souls out there like you that continue to hold firm in the face of so much misunderstanding and fear. Keep going. We’re behind you ^^

    Liked by 5 people

  12. Keep going, Keep learning, Keep Seeking and NEVER Give Up!…Im 47, are Autistic and life keeps getting better. Even though I have a truck full of failures.. (or better…successes in disguise), the journey is fun, I actually feel quite sorry for those who are ‘neurotypical’..so many rules to live by..

    Liked by 6 people

  13. Lovely post. I know where those people are coming from. Because we don’t know much about it, not naming it is almost a way to apologise for our ignorance or simply because we think we can offend the autistic people. We need to be educated more on this matter, that’s for sure. I’m an Italian living abroad, therefore I’m a foregner. It’s a fact. yet people here try to avoid saying the word foreigner so not to hurt me. But why would I get hurt when it is my status. Would I get hurt if you call me brunette? Of course not, it’s what I am. So the same we sho uld learn to say autistic. It’s not a bad word, we are not offending anybody

    Liked by 4 people

  14. Being autistic is not the end of your world but evading speaking it makes it seem gross, it begins to sound like a monster buried deep at the pit of your stomach. it feels like you have a full-time job of making it invisible which my further aggravate to an identity crisis. well penned.

    Liked by 3 people

  15. Our disabilities define our very lives and it is a harsh, dark world when those you care for, those you rely on for the support and understanding you need to continue, is not ‘there’ for you. It takes time, sometimes a very long time for them to accept it. Strange how our family and friends go into even deeper denial than us our selves. I went through it not once but twice and still 12 & 9 years later, some still refuse to accept it. What drained me even more is that with each symptom/problem, and due to the systemic nature of it there is many, it’s a new struggle all over again. The same story … ‘your making excuses’, ‘your lying to the doctors’, ‘the doctors don’t know what they’re talking about’.

    But we battle through it and maybe, that’s exactly what we need. It takes strength of will and determination to remain standing and keep fighting and perhaps, having family and friends withdraw, helps us to build up our strength …

    The disabled is some of the strongest and bravest people to me … we run at 110% just to do the simple things in life and that takes courage.

    Liked by 3 people

  16. This was such a great post! It’s good to see that people are trying to spread the message that it’s a part of life and shouldn’t be avoided as a topic of speech; that will just increase the stigma.

    Liked by 3 people

  17. Really enjoyed reading this! I am a big ambassador for autism awareness at the school I work at and I’m trying my best to get staff and pupils to understand what autism is and that its ok to talk about it. There is definitely a need for more education surrounding autism.

    Liked by 3 people

  18. Thanks for this🙂 I find so often people are reluctant to acknowledge autism (with which I am open in general) at all, with notable exceptions for when people think they have something to use against me. I love “you won’t catch it if you say it” – I wish I’d had something that pithy and to-the-point when people were giving me cr*p! :p

    Liked by 4 people

  19. I think it comes from the fact the advertising people see and portrayals of autism are so negative/scary they experience cognitive dissonance trying to associate somebody who’s not with autism. So they want to “protect” people from being associated with the “scary” thing but also don’t totally believe it themselves on some level.

    I’m autistic, I say it a lot because I do want people to have new images of that word, that I control, not some marketing campaign.

    Liked by 4 people

  20. Hi autistic beekeeper,
    Your blog brought me to tears, I can so relate to it.
    Ahhh … to be able to tell my sisters about the new interest I have, and hów much joy it gives me, and … ohh, sometimes I feel I will burst, I want to tell them so much about all these pieces of the lifelong puzzle that keep falling in place almost évery day now. (I was 62 last year, when diagnosed as being autistic, so for me this is still a whole new world … terminologywise and such, know what I mean?)
    And then I read blogs like yours (Gawd, you bloggers are all such great writers, it’s a joy to see posts with proper punctuation and such, LOL) and I think: ‘I’m not alone, I’m not the only one who, apparently, is not supposed to even touch the topic in public.”
    Not that my 2 sisters are ashamed of it, far from it.
    No, they tell me we don’t nééd to talk about it, cuz finally my quirks and otherr typical “Jos”-stuff are explained, énd of story.
    And when I tell them I want to share all this new stuff, all these discoveries I make, they tell me it doesn’t add anything to the whole picture – I am just mé, and they are just my sisters, who have their own typical behavior from time to time.

    LOL, sorry for rambling … I guess I burst a little and I couldn’t stop anymore.

    Again, thánks A.B., I don’t know you, but somehow I feel you will – given time – totally succeed at making your being autistic negotiable with the people you so wánt to interact with you on this particular topic.
    Greetings from the Netherlands.
    Jos.

    Liked by 3 people

    1. Hi Jos! Thank you so, so much for this beautiful comment. This is why I blog, because I had so many experiences like the one you had. I read a lot of blogs from autistic women that make my heart sing with familiarity. That feeling never gets old.

      I get a lot of comments like your sisters make, as well. Getting diagnosed in adulthood tends to startle people into denial. They are right, you are you! But now you get to explain so much more of yourself! It’s brilliant! Maybe they’ll come around and celebrate your new discoveries with you.🙂

      —AB

      Like

  21. I enjoyed this post. I was recently researching Sensory Processing Disorder for my son and stumbled on a site that mentioned Autism related to SPD. I’ll admit, when I saw that I stopped researching – because if I didn’t see it or read it then I could plea ignorance and maybe the thoughts or ideas wouldn’t exist. I think what you have written about people not wanting to even say the word so that it doesn’t affect them is accurate. It’s unfortunately true and your post made me realize I’m not the only person reluctant to acknowledge it. Thanks for writing this – it was englightening.

    Liked by 4 people

  22. As a grand-mom with a newly diagnosed autistic granddaughter I find your blog offers me hope. I have no idea what is in store for this loving, beautiful, and sometimes misunderstood child. I see your writing and think; “Maybe she will be able to articulate her thoughts on paper” or she will be mainstreamed enough to go to college. I know so little about Autism. What I do know is I will be her advocate. Thank you for sharing your thoughts.

    Liked by 4 people

  23. I thought this article was great because language has become such a sensitive topic in the field of special education and disability, and I think there is this misconception that there are definite “do says” and “dont says” and that simply is not the truth. What kind of message are we sending if we are putting, like you said, a taboo on language that describe disability?

    Liked by 4 people

  24. Thank you for sharing! I feel as though people are afraid to say these words out loud because then it makes it more real – more there, or at least that’s how i feel whenever i mention to people that i have lupus and they just stare at me, completely uncomfortable, with no knowledge of how to continue the conversation or what to ask. It’s time we start being more open and loud about these matters!

    Liked by 2 people

  25. Really interesting post! Personally, I think it’s up to the indivuduals if they want to talk about it openly or not. I am not autistic, but I know a couple of people with asberger’s, and one of them talks about it openly, while the other would like to keep it a secret. I know I am very private about problems I face, but I think it is a different situation when it a part of your personality rather than, say, mental illness. Anyway, I think it is really cool to be able to be open about it, especially since it offers insight into why people are the way they are.

    Liked by 1 person

  26. Brilliant post. I’m Autistic (not a person with autism!) I’m autistic & that’s how it is. Wrote a post recently called ”Eskimo words for snow’ along the same lines. Being autistic & having MH problems too are really hard to describe to someone who doesn’t experience them. Maybe because we don’t talk about them enough (and linguistically don’t develop the words) or maybe there aren’t the words for things that only a few people experience.

    Liked by 2 people

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