What You Need to Know After Your Kid is Diagnosed Autistic

A note from Lil Helper:

Hi all! Caitlin here & so thrilled to introduce today’s guest blogger, Alix. I met Alix through a local story time program, and quickly knew they were an expert on all things early childhood education. Alix has taught me so much about gender identity, inclusion, and autism, and I’m thrilled to feature their unique voice on autism pride on our Lil Helper blog! Welcome, Alix!

One thing to learn: a rainbow infinity symbol is a more positive symbol for autism than a blue puzzle piece. Photo Credit: Megan L.

June 18 is Autism Pride Day

Wait, what? Isn’t April Autism Awareness Month?

Traditionally, the big organizations that focus on autism push “autism awareness” every April. They just want to make money. They’re looking to cure us--to rid us of something inherent in the way we think and process the world. Ultimately, they’re looking to eradicate autism, and I beg you to listen to autistics themselves--we would like to exist, please, and celebrate our own existence.

April is an exhausting month for autistics, because we’re speaking out against organizations like Autism Speaks that have huge budgets but employ very few actually autistic people. They pity us and our families, and tell our parents that it’s sad and disappointing that we’re autistic because we have so many limitations. Check out the hashtag #actuallyautistic on social media if you’d like to hear from us directly about our experiences!

June, on the other hand, is already a pride month, and autistic people are disproportionately members of the LGBTQ+ community--possibly because we don’t see any point in traditional social rules about gender or orientation. In fact, most of the autistics I know are transgender or nonbinary, like me. It’s really common for autistics to just not fit in with their assigned gender at birth, the same way we don’t seem to fit in anywhere.

Alix teaching at Camp Dragonfly.

So, awareness? I think we’re all plenty aware that autism exists in 2022, the way we’re aware that ADHD exists. Funny enough, both of these things are best described as “neurotypes,” not mental illnesses or disorders. They may, according to the person who’s dealing with them, be disabilities, but that depends on how disabling the environment around them is--NOT how “high or low functioning” the person is. Looking at disability as an environmental issue rather than a medical one is called “the social model of disability,” and it helps us create environments that support disabled people better rather than just exclude them.

In fact, functioning labels do us all a disservice. You might read my writing or meet me at work and think wow, they’re really high-functioning! Look how articulate they are! They can drive and everything! They have a university degree! Yeah… well, when you put me in the high-functioning box, what happens when I have a meltdown because the pizza toppings aren’t the ones I expected to have, or three people talked at once? Aren’t I supposed to be able to handle that? “High-functioning” autistics don’t get enough support, and “low-functioning” autistics don’t get enough respect.

Speaking of language, I am autistic. I’m not a “person with autism,” no matter what an organization tells you about Person-First Language (PFL). PFL’s mission is to remind allistics (non-autistic people) that we’re human, which is honestly pretty dehumanizing. If you need a reminder that I’m a human being, I don’t think language is going to be enough. In internet polls, the wider the audience, the higher the ratio of autistics who prefer Identity-First Language--that is, I’m autistic. The last poll I saw had 80% of us preferring it.

This is because autism is the way I think, the lens through which I see the world. If you took it away, I don’t have any idea what sort of “me” would be left. I don’t know what I’d enjoy, what I’d think about, or even how I’d think about it. The literal sparkles and spiciness that my brain feels when I’m engaged in a topic that interests me are things I’m told allistics don’t feel, and I can’t imagine that existence. I’d probably have less dyspraxia--more hand-eye coordination, better motor skills--but I wouldn’t trade that for a brain without sparkles, not for a million dollars.

Why listen to me?

Excellent question. I’m not a doctor. But I am an educator, and for years I was told that was impossible because there was clearly something “wrong” with me. In high school, I was diagnosed with OCD. I twitched and fidgeted, was utterly dependent on routine, couldn’t handle long days, loved children but could hardly speak to adults. I still have trouble speaking the “language” of adults--I can come off as rude without meaning to at all, and I try to warn people about it now.

We didn’t always know I was autistic, because I was assigned female at birth. And little girls who have huge vocabularies aren’t what doctors look for. Even now, it’s harder for girls, people of colour, LGBTQ+ people, and people without class and money privilege to access a diagnosis. Look on tv--autistics are skinny white men who have savant skills, amazing gifts, usually in the realm of science. Doctors are still looking for little white boys who like trains and memorize facts. Little girls who study blending in with their peers so as not to get bullied, care way too much about following the rules, and mouth all the words to their favorite movies (which they watch every day) aren’t even checked out for autism--they’re “quirky” or “gifted.” Until they “gift” themselves right into a spot at university, where suddenly they burn out like a dying star.

When I was asked to actually study and work, I realized that I’d been coasting on my autistic skills my entire life--for example, I read by picking up a paragraph, taking a picture of the important words in my head, and moving onto the next paragraph. I can plow through books this way--IF I know what they’re about. But if I have to really put my mind to studying something brand new, that’s a skill I never learned, because everything academic always came so easily to me. (This experience is not universal to autistics. No experience is. The saying is, if you’ve met one autistic, you’ve met one autistic. We’re not all geniuses, and that stereotype is what makes me feel like a disappointment so much of the time.)

One of the things that comes easily to me is understanding children. Their language makes perfect sense to me: the way their feelings are so obvious, and the solutions are too. I know what kids need to hear, to be reassured or encouraged. I know how to tell when information is too hard for a kid to digest, and how to pick it apart to make it accessible. I love to teach science, history, myths, and early literacy. I have a ton of games and lessons at the ready, time-tested and kid-approved, because I know how kids like to learn.

Alix sparked a love of songs, reading, and games in Caitlin’s daughter at a very early age.

High-functioning, right? Ask me to introduce myself to a stranger. That palm-to-palm of shaking hands (pre-COVID, of course) makes me literally want to throw up. It’s like being asked to lift up my shirt and touch stomachs. Palms are intimate and I’ll never understand why we’re still doing this. Pandemic isolation has been such a relief in this way--I don’t think I’ll ever be able to force myself to be quite as social as I could be before now.

Why your autistic or neurodivergent kid will be totally ok

The big advertising campaigns for “awareness” are all doom and gloom--how to mitigate the tragedy of your child’s disorder. Look, the only tragedy is treating someone like their life is a tragedy. When my partner, my mom, and I all realized that I was autistic--and I was 30-something by the time we clued in--suddenly we realized that the things we’d been doing to push me to act more like a human weren’t what I needed at all.

Alix, age 2, waving a birthday card.

I’m not a subpar human. I’m terrible at acting allistic. But I’m an excellent autistic. And once I realized that, I could play to my strengths instead of constantly fighting my limitations.

Example: Socializing with adults is really hard for me. But instead of pushing myself to keep trying social situations, now I recognize when I need a day off from talking to people in order to recharge. And even parties CAN work for me, if I set my expectations. I know I’ll need allies there that know me, a quiet place to go if I’m overwhelmed, food that my brain recognizes as food (which in high-stress situations is pretty much just chicken nuggets and pasta), and a couple of fidget toys in my bag. I can do really stressful things, just only a little at a time, and I’ll need to rest afterwards.

This shift in “I’m not broken; I’m just autistic” came relatively late in my life, so I’m begging you to save your kids the trouble. For years I tried to force myself into that allistic box. I’d have gotten as much use out of university if I’d just sat down in a room with a stack of books and read them all--going to class with hundreds of people daily was an impossible task. I taught in school after school before finally realizing that organizations have unspoken rules that they will never be able to fully explain to me before I break them, because allistics don’t even know what they are.

Lots of parents worry that by labelling their child, they limit them. And to that, I say, have you ever seen a cat in a box? If a cat needs to be in a box, they’ll stay there. But no amount of shoving a cat into a box can make them want to be there. The same goes for diagnoses. If autism isn’t the right one, you’ll know because it won’t fit. But if that cat really needs to be in that box, you won’t be able to keep them out. Trying to make an autistic kid into an allistic kid is like trying to shove a cat into a box. Let us be ourselves, and let us thrive as who we are and develop the skills we actually have.

If you’re interested in learning more, the #actuallyautistic hashtag on Twitter is a great place to start. Amythest Schaber’s “Ask An Autistic” YouTube channel is absolutely essential watching, and Facebook pages like “This is autistic culture,” and “Sounds autistic, I’m in” are also awesome communities. Basically, listen to autistics about autism. Doesn’t sound that hard, does it?

About the Author

Alix (they/them) is an autistic early childhood educator whose gender is nonbinary and whose special interests include Middle English, our solar system, the TV series and book Good Omens, and ancient mythology. Their partner B (he/him) is an incredibly patient paramedic and together, they have two dogs, four cats, and 42 plants. Their toddler friend Aileen’s mom asked them to write this article about autism for Lil Helper parents and they are very excited to help neurotypical parents support autistic kids!

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