5 Things Not to Say to Parents of Autistic Children

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Typically, when individuals with certain conditions refer to themselves, they prefer person-first language. This means a person would be described as “Jane, a person who is blind”… or “Oscar, a Muppet with mood disorder.” In the autistic community, there is a preference for identity-first language, for example, “Rebecca, an autistic person.

My kiddo recently had an official medical evaluation and received an autism diagnosis. My wife and I expected this, and are grateful to have the diagnosis when she’s young as it gives us more information, and will help ensure she gets the supports she needs in school. So for us, getting a diagnosis is a good thing. Being autistic isn’t bad, it’s just part of her. It’s a word to describe how her brain works a little differently than others.

But sometimes when I tell people my kid is autistic, they have a sad reaction. There’s no reason to be sad. We are not sad, we are happy to be able to describe her experience to her and others as needed. 

This list of things not to say to the parents of autistic children is inspired by well-meaning folks who have reacted to the news of my daughter’s diagnosis in ways that make me uncomfortable. To say the least. 

I want to note that I am speaking just for my family here. Everyone’s experiences and preferences are different. Other parents of autistic kids might welcome some of these comments. Autistic people may also have a range of reactions to well-meaning comments, and I want to be clear that I’m not speaking for autistic people here, but only from my experience as a parent of a young child who is autistic.

Though it is not a secret, I am not sharing my kid’s story with everyone I meet. Her experience is hers to share. Since she is young, I do talk about it with her teachers. I mention it to friends or family when it’s relevant to the conversation. I am an ally in this situation, and similar to a parent of a queer kid, it is not my place to talk about her identity unless she asks me to as she gets older.

As lesbian moms, a lot of these responses to our kid’s autism have similarities to the way some people respond to learning someone is queer or trans. That is to say, some people act like being queer or trans is something to be ashamed of, to speak of in hushed voices, or to be sorry about. Some reactions speak as loudly as words. Put these into my list of things not to say to the parents of autistic children too.

Being queer helps my wife and I parent our autistic kid: we are used to having an identity that is not always understood and that the world is not set up to support and value. We can help her navigate the world as we learn more about what she needs, just as we have navigated a world not created for our queer identities. Being queer is of course not the same as being autistic, but society’s reactions to both do have similarities. With each item on this list, I’ll discuss the parallels to queer and trans experiences. 

Without further ado, here are the 5 things not to say to parents of autistic children:

1. I’m sorry

I am not sorry. Being autistic is not something to be sorry about. It is a difference in neurotype. We are happy to have this extra piece of information about our kid. Now if someone wonders why she wears headphones sometimes or why her language sounds different, this can be part of how she explains herself if she chooses. As parents, we won’t be disclosing parts of her identity to strangers just as we would not out someone as LGBTQIA+. 

So, I’m really not sorry she’s autistic. This is just a part of her. What I am sorry about is society’s perception of autism and autistic people, though the tide is turning and so many people (myself included) have more knowledge about neurodivergence thanks to activism from autistic people and their allies.

The “I’m sorry” response is similar to people saying “I’m sorry” when someone says their kid or other relative is queer or trans. I love being queer- I’m not sorry about it and you shouldn’t be either. And if you are, don’t tell me about it.

2. You should check out Autism Speaks!

No. Absolutely not. If you don’t know, most autistic people consider Autism Speaks harmful. Autism Speaks is known for not listening to the voices of autistic people. They also promote Applied Behavioral Analysis (ABA), which is a common and controversial therapy for autistic people. This organization has received a lot of criticism for its reliance on rewards and compliance, among many other aspects, and many autistic people find it traumatic.

Our family was recently at the mall, and we were asked if we wanted to donate to this organization. My wife immediately declared “No! My kid is autistic, I know what that organization does.” I, naturally, swooned at her fierce protection of our kid. 

If you’re looking for another organization to learn about autism, I suggest the Autistic Self-Advocacy Network. I also just started reading Supporting Autistic Girls & Gender Diverse Youth edited by the founder of Yellow Ladybugs (an autistic-led, Australian organization for autistic girls and gender-diverse people). Organizations about autism should, at the very least, include autistic voices.

My reaction to Autism Speaks is similar to my reaction to the Human Rights Campaign (HRC). The HRC is the largest queer organization but they have historically left many LGBTQIA+ people on the margins of the margins, like transgender people. They don’t get my money either.

The book "Supporting autistic girls and gender diverse youth." Yellow cover with illustrations of a rainbow and three children.

3. “Care react” on Facebook or similar social media responses.

There’s no reason for “care” when I am sharing a post about autism or just stating a fact. Our kid doesn’t have cancer. She’s not sick in any way. Simply stating “she’s autistic” does not need care, or pity, or sympathy.

Now, if I was saying that we had a bad day, that something upset my kid, that her accommodations were not followed at school (not that I would share her personal information, this is a hypothetical), yes, show sympathy and care. Share in our anger and frustration. Give me ideas if I ask for advice or strategies. I know people do not intend to be offensive here, but again, I am just stating a fact. I don’t need or want a sympathetic reaction. 

I wouldn’t want people doing that to my kid either. I don’t want her feeling bad about how her brain works. She’s an awesome kid, she’s fun, she’s happy, loves to dance and sing (and sometimes allows my wife and I to dance with her- but only if we get the choreography right). 

Drawing parallels to my queerness again, the only reactions on social media to someone discussing their LGBTQIA+ identity should be positive. Likes, loves, celebratory GIFs. No sympathy reactions unless someone is telling a story about being discriminated against. 

4. But she makes eye contact [or displays other neurotypical traits], how can she be autistic?

First of all, are you a doctor? And, if you are, are you my child’s doctor? Diagnosing or un-diagnosing her is right up there in my list of things not to say to parents of autistic children. I have learned over the past near-two years while we waited for the evaluation, that autism does not always mean someone has the stereotypical traits portrayed in the media of the 1980s and 1990s. 

When we first started to wonder if she was neurodivergent in some way, I found a speech-language pathologist (SLP) on instagram who works with autistic kids. She has many informative posts describing how autism is a pattern of differences, and she explains the ways this can look in young children. I recognized my own kid in her descriptions many times. 

I recommend following her and other neuro-affirming people if you and/or your kid is autistic as these can be great sources of information. 

To learn about any minoritized identity, it’s good practice to look to the voices of those in the community. 

My kid is too young to be online, so I look to autistic adults and autistic-led organizations. Please recommend ones that you like!

This is how, in my life as a queer advocate and educator, I recommend people learn about queer communities. Read and watch content from queer creators. Remember that being queer or trans is just one part of someone’s identity, so look for a variety of representations in other aspects of identity such as race, disability status, nationality, and others so that the information you consume comes from a range of perspectives. Many queer and trans people have the unfortunate experience of hearing something like, “But you’re too pretty to be a lesbian” or “You don’t look like a man.” 

Accept the identities that people share with you without this kind of commentary.

Sound protection headphones for kids, with an orange headband and multicolor ear pieces.

5. Won’t she grow out of it?

With young children, it can sometimes be difficult to get an autism diagnosis as a lot of their behavior may be typical of their age and developmentally appropriate. When our kid’s daycare provider first talked to us about it, we were confused as we attributed some of the things she did (being shy around new people, not talking in sentences when expected) to her age and not being around that many people when she was a baby and young toddler due to the pandemic.

But she is autistic, and that is not something that she will grow out of, though of course her skills and personality will continue to develop and grow. Her diagnosis describes her neurotype. 

Yes, she is less shy as her confidence and language grow, but there is a difference in how she speaks and socializes compared to neurotypical kids. This doesn’t mean she doesn’t like people- she’s very social and my wife and I joke about how it seems impossible that two introverts like us could have landed an extrovert. 

So while she may be less shy, the way she interacts with people may continue to look different throughout her lifetime. There may be new situations as she ages that are difficult for her, and we will work with her and her teachers to figure out what supports she needs. We are lucky that our early childhood services through our school district have been fabulous. Our special educator and SLP are great and we hope this is only previewing the kind of neuro-affirming care she will continue to have. 

Don’t get me started on how this dismissal of identity as a childhood phase parallels queer experiences. It should go without saying that if things not to say to the parents of autistic children include not saying their autism is a phase, then maybe let’s also try respecting young people who come out as queer. So many anti-queer folks think being queer or trans is a phase that kids will grow out of. This attitude is extremely harmful and denies LGBTQIA+ people’s identities and makes them feel unsafe. I’m in my 40s and queer, and will be queer when I die. 

Autistic folks or parents of autistic kids, what would you add to my list of things not to say to parents of autistic children? How do these experiences connect to your other marginalized identities?

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5 Things Not to Say to Parents of Autistic Children

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2 COMMENTS

    • Thank you for reading! We’re learning as we go and will make mistakes, but some folks should really take a breath before speaking.

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