I Can’t Call My Child Autistic if I Don’t Even Know What it Means

You know the phrase – If you’ve met one person with autism, you’ve met one person with autism. Well it’s true.

Since my son, Julian, was diagnosed with autism last year, I’ve done a great deal of research about the autism spectrum. I’ve talked with countless doctors, therapists, autistic adults, and autism parents.

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Each professional I talk to and each article I read sends me in a different direction. Each individual I talk with tells a different story.

Honestly, autism confuses me. The whole idea of a spectrum confuses me.

If a man tells me he’s Chinese, I know that means he’s from China. If a mom says her son has Down Syndrome, I know he’s rockin’ an extra chromosome.

But when a woman tells me she’s autistic, I don’t even know where to begin. I want to ask, How so?

I’m a college educated woman. I taught elementary school for 5 years. I consider myself intelligent and resourceful.

But when it comes to autism, my IQ seems to drop a dozen points. No matter how much I research, I still don’t understand what being autistic really means.

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I’m sure part of my confusion stems from Julian’s own unique situation. He’s an identical twin. He and his brother, Dominic, were born prematurely, and spent 6 weeks in the NICU. They’ve always been delayed.

And while they both have trouble sleeping, both walk on their toes, and both rock like they’re on the crew team, only Julian qualifies for an autism diagnosis.

Hence the confusion…

Now don’t get me wrong. I’m not hung up on Julian’s diagnosis. I love him unconditionally, no matter what. And I’m thankful for his autism diagnosis, which has opened so many doors for him to get the services he needs.

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But recently, there’s been a lot of talk about how to refer to a person who’s been diagnosed with autism – whether to use person-first or identity-first language.

Growing up, I was always taught to use person-first language. Darla has schizophrenia… She is not schizophrenic. As a general rule, person-first language is more respectful.

But there are well-known exceptions to this rule. For instance, the deaf community prefers identity-first language. Susan is deaf… not Susan has a hearing impairment. The blind community is the same way.

The debate about person vs. identity language seems to be a hot topic in the autism community. The vast majority of neurotypical still use person-first language (news outlets, literature, professionals).

But there’s been a big push from the autistic community to make identity-first language the norm. There are several reasons for this push, which all have merit and make sense to me. One adult autistic I’ve met explained it this way:

I say “autistic,” not “with autism” because I don’t carry it next to me in a messenger bag. It’s part of me, from the brain down.

Another person told me he thought having autism sounded negative, like it’s a disease. And he clearly wore his autism as a medal of honor, as if it were a real-life super power.

Hey, I get it! And I support their efforts to advocate for themselves. But with a spectrum that encompasses so many characteristics, I have to ask this question:

What makes someone autistic? Surely the diagnosis itself isn’t the main factor, as many adults have been newly diagnosed since the DSM V came out. And there will certainly be edits to the diagnosis criteria as more research is done, and more feedback has been given.

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Right now, I don’t know if Julian is autistic. He’s four. I know he likes to laugh. I know he enjoys playing with his brothers. I know he loves going to the beach and the aquarium.

I also know he’s not ready to talk yet. And he has trouble getting his body to do what his brain tells it. But I think I’ll wait a bit longer before I call him something that he may not agree with.

Because language is very important, as autistic adults have been trying to point out. And I want to give him time to develop, and figure out what he is for himself. So for now, I’ll call him Julian. And if needed, I’ll say he has an autism diagnosis.

⚠️ UPDATE! ⚠️

It’s been one year since I wrote this article. My boys are five years old now, and in kindergarten. And guess what??? They’re both autistic!

So what’s changed??? Basically my own understanding, and that’s it!

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Most of my confusion stemmed from Julian’s twin brother (Dominic) not qualifying for an autism diagnosis. But, it turns out he was misdiagnosed by a doctor who used an IQ test, instead of more appropriate tests for his abilities. (Insert face-palm here.)

Once he was retested, I finally started to get it. Dominic has been autistic all along, with or without a diagnosis! He learns differently. He thinks differently. He feels differently… Just like Julian.

And while they each have their own ways of learning, communicating, and interacting with the world, they’re both on the spectrum.

If I knew then what I know now, I would’ve told that doctor that her IQ test wasn’t made for my speech-delayed child. And I would’ve left her office right then and there.

But I didn’t know. I trusted the doctor to give me accurate information. I listened to her when she said his IQ was 58… even though I knew deep-down, it wasn’t true.

Maybe I can’t get a do-over. But hopefully this story will help at least one other person who’s struggling to understand what being autistic really means. Autism might be the diagnosis, but the diagnosis (or lack of diagnosis) doesn’t define the person.

 

Follow our journey and learn with us on Facebook, at Not an Autism Mom.

 

12 Replies to “I Can’t Call My Child Autistic if I Don’t Even Know What it Means”

  1. I love this! Thank you for always saying what I am thinking but not educated enough to say it and have it sound – right. ❤️

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  2. I feel PFL is horridly clunky, for one thing. It would take a while to dig up the thread I wove about it on Twitter a couple of weeks ago, but suffice it to say it can be really confusing, especially to someone whose first language isn’t English.

    But being autistic is a badge of honor for a lot of us, and while PFL itself may not disrespect us and our preferences, the disrespect oozes from allistic people who are constantly shoving it down our throats.

    The thing is, PFL may seem preferable if you’re talking about schizophrenia, PCOS, personality disorders, heart disease, or any treatable, curable illnesses. But autism is not an illness, curable or otherwise; it’s an acceptable difference. That’s why 75-97% of autistic people, in countless polls, have expressed their preference for IFL. It IS our identity, and we don’t want it removed from us by any means.

    And to understate one more thought, no, neurotypical people have no business making ANY decisions for the autistic community.

    Liked by 1 person

  3. Excellent post. I’m an adult with autism, or an autistic adult. Either term works for me, but I usually use that latter for brevity rather than political reasons. I don’t over identify with a condition that’s so amorphous as to almost render the word autism almost completely meaningless. I also know autism is neither an inevitable nor an unchangeable state. The only thing inevitable or unchangeable about my existence is my humanity. I disagree with The Autistic Superhero’s comment above because I know autism is absolutely treatable. I support treatment for the most severely disabled people–who tend to be people of color like myself–as well as anyone else who may choose treatment. I get emails from autistic adults all the time asking me what I’m doing to heal. Autistic groupthink is so powerful that the adults type to me with shame and fear. Shame and fear imposed for wanting healing–absurd and sad, really. The shame and fear imposed by the autism community can be more powerful than any shame they ever experienced due to actions of the NT community. I’m 42-years-old. Keep in mind the neurodiversity movement is an immature movement filled with young human beings still learning about themselves in the context of a challenging condition and a censorship happy world.

    Liked by 3 people

    1. Thank you for this different view. I love hearing testimonies. It makes me sad to think there are people feeling guilty about wanting to heal.

      I read your article, “Let’s Elevate the Conversation about Autism.” (I know I messed that up, but I’m on my phone.) I have always had the same thoughts about the autism umbrella. Have you read my “Alice in Autismland” article? I’d love your thoughts. ❤

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    2. I am learning everyday. I chose not to have my son wear a label. He is seven, and sometimes I question myself when I read blogs or articles from adults who are on the spectrum and I question myself. I take everything into account and still forge ahead, because first and foremost I am his mother who wants the best for him.

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  4. As the mom of 2 adults with developmental disabilities, here’s MY response to calling anyone, “an autistic”…. I have a son with autism…. he also has cerebral palsy and a cognitive disability… and a hearing impairment. So… what’s the name for that??
    “autistic, borderline, deaf crip”??? Really? No… he’s a sweet guy with autism, cp, hearing impairment and cognitive disability”….

    IMHO, the people with autism who favor being called autistics, are the people who have autism paired with a high IQ…. they’re NOT the people with a host of additional disabilities.

    Liked by 2 people

    1. Well, your “humble opinion” is wrong. I know plenty of autistic people with below average IQ or other disabilities, and they pretty much all describe themselves as autistic rather than having autism.

      As for other disabilities, that’s decided on a disability by disability basis. Personally, I always call myself autistic rather than a person with autism, but I rarely call myself asthmatic – I am not offended by the phrasing, but it feels more accurate to say I have asthma.

      If your son has the communication skills necessary to tell you what phrasing he prefers, go with his preference. If not, go with the majority preference for each diagnosis he has. So autistic, Deaf, with a cognitive disability, and probably with CP (although I do know plenty of self-identified crips in the CP community, it doesn’t seem to be the majority).

      And stop dismissing self-advocates just because you perceive them as having different struggles than your son. It’s transparently convenient – “anyone who can argue with me is too high functioning to be listened to”.

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      1. Interesting that you compared the terminology to being asthmatic verses having asthma. I assess patients everyday and when they use the term asthmatic, it leads me to believe they live with that struggle daily. But when they say I have asthma,I feel led to believe that this is an occasional struggle brought on by a trigger. Of course, I have follow up questions, but these are my first thoughts. Maybe there is something to that in how you feel comfortable identifying with the diagnosis. Is it a characteristic you wear like a badge such as race or gender, or is something that you identify with in conversion only when it’s relevant such as profession or religion? Autism is invisible unlike race or gender, but it doesn’t feel invisible.

        Liked by 1 person

  5. I think the most important thing for YOU to remember, @notanautismmom…. is that the diagnosis gives you exactly what you need right now. Whether it changes down the road or not…. whether other diagnoses are added to the mix…. Julian has the therapy he needs… and he qualifies for school services…

    So I’ll say to you what I used to say to all my EI parents…. take that ticket and use it! I’m glad you’re asking questions… doing research (no surprise there!)…. and advocating for the kiddos. That’s what they need right now.

    And, if it’s simply part of their story, then additional diagnoses or changed diagnoses won’t be all that troublesome to them. I know when David got his autism diagnosis, it was sort of an “OK, we knew that” moment….. and it answered some questions — and yes, I wish he’d have had it when he was in school. And when his hearing deteriorated, he took that in stride, too…. and has no problem telling people he can’t hear.

    You KNOW I’m committed to PFL… and that’s a decisions I’ve made as a neurotypical advocate for a non-neurotypical kid. And yes, I think I have a right to do that.

    Liked by 2 people

  6. I see it like that conversation between Jon Snow and Tyrion. Never forget what you are. Wear it like armor so that the world cannot use it against you. Essentially, if I could fly it like a banner, I would.

    Like

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