Last year, we found out that our three-year-old son is autistic. Since then, we’ve been learning so much through our own journey, and through the irreplaceable perspectives and advocacy of the autistic community on social media.
I recognize that most of us aren’t exposed to autistic perspectives on a daily basis. The nature of our “real” lives can be very segregated due to societal barriers and inaccessibility, and the online world can be an echo chamber. After all, I only started following autistic adults on social media after my son Koimburi’s diagnosis, so I can’t expect every single friend and family member to suddenly do the same. (Although I hope that after reading this, you’ll follow a couple!)
What I can do is share what I’ve been learning in hopes that it will pique your interest to learn more. Here are 5 of the most important facts to know autism – with links to learn more on each topic from advocates who are actually autistic. If you’re looking for an introduction to how to love and support the autistic kids or adults in your life, this post is for you!
Autism is a neurotype, not a disease.
Autism is part of the essence of who someone is. It can’t be separated from them, and it doesn’t need to be cured.
Most of us are only exposed to the “medical model” of understanding autism, which leads us to believe that it should be “treated”: that traits should be minimized in order to function like a non-autistic person. The neurodiversity movement, on the other hand, insists that there are many different ways in which the human brain can be wired – and that’s not a bad thing. While society considers the neurotypical brain to be the most desirable, or even the only “healthy” type, neurodiversity embraces both the pros and cons of how different brains function. Because society is designed for neurotypicals, the positives of the autistic brain aren’t often seen, since barriers are in place that prevent autistic people from succeeding as easily. But if we embrace neurodiversity, we can begin to fight against that discrimination, instead of fighting autism itself.
In a sentence: autistic people aren’t broken – society is.
“Autistic” isn’t a bad word.
Because you can’t separate a person’s autism from their deepest sense of self, the vast majority of autistic people prefer identity-first language (“autistic person”) over person-first language (“person with autism.”) I know it may feel awkward to say, since many other communities with disabilities prefer person-first language. I also hear people say “on the spectrum” frequently, perhaps because even the word “autism” sounds harsh to our ears due to society’s negative perception. But if we truly believe that people who are marginalized are the experts on their own experiences, we should respect their requests.
This doesn’t mean that identity-first language is absolutely correct; we should always defer to the preference of the person to whom we’re speaking or referring. But for now, since my son isn’t able to express how he self-identifies, I will follow the lead of the vast majority of his community and describe him as “autistic.”
We don’t feel like our son has been “labeled”.
This is a tough one, especially in communities that are already marginalized due to race. I’m white, but I’m raising Black children. At the heart of our parenting, we fight to ensure that our kids grow up empowered, with minds that are as free of societal limitations as possible.
In a country where labels of all kinds are consistently used to limit Black and brown children – especially in school settings, and especially when it comes to “behavioral” issues – I understand deeply why parents of Black and brown kids would be wary of pursuing a diagnosis. While I won’t tell another family what to do, I will simply state that, for us, a diagnosis is a very positive thing. Again, we are following the lead of autistic advocates on this, and the number of people only diagnosed in adulthood is staggering. In every account I’ve read of this experience, there is a sense of finally understanding – of everything “clicking” – that they wish they had much sooner.
So that’s what we want to give our son – a full understanding, from the start, of all the beautiful traits that make him who he is. Equally importantly, we want to learn everything we can about autism so that we’re equipped to help him thrive, and able to access all of the services and accommodations he may need. We’re not naïve about the battles we will likely be fighting throughout his education, but having a fuller knowledge of how his brain works helps us to advocate for him more effectively. And at the end of the day, the opportunity for our son to know, embrace, and celebrate himself fully is our number one priority.
If you’re wondering how to interact or play with our son, feel free to ask!
Koimburi is often “in his own little world,” but you can definitely enter into it if you engage in whatever he’s engaging in. And even if he doesn’t show a response to what you’re saying, please talk to him like you would any other kid! There is definitely some overlap in instances of autism and instances of cognitive impairment, but autistic people have a whole range of IQ levels, and we’re pretty confident that Koimburi is comprehending everything we say. So chat away!
And there’s no need to feel awkward if your kids are super blunt or ask questions. That’s one of the greatest things about kids, if you ask me: they cut through all the weird societal hang-ups we have and just keep it real. And they usually don’t need overly complicated definitions of autism – “he communicates in other ways besides talking” and “he plays a bit differently than other kids his age” work for us.
We’re probably not as focused on traditional milestones as other parents you know.
Koimburi is on his own timeline, and that’s okay with us. In many categories, he is far “behind” his peers. In others, he’s “ahead.” What we’re concerned with is making sure he grows into exactly who he’s meant to be, and that he feels loved, supported, and nurtured along the way.
Of course, conversations about kids often center around milestones, especially in the early years. It’s exciting when a baby rolls over for the first time, starts walking, or says their first words. There’s nothing wrong with celebrating all the little joyful surprises that come with parenting! But with Koimburi’s autism, we’ve observed that those little “achievements” ebb and flow. One week, he’s communicating with us in a particular way that’s super exciting… and then he stops. One day, he does something new completely out of the blue… and then doesn’t do it again for weeks.
So, although I’m happy to answer questions about how speech therapy is going, or if he’s doing anything new, just be aware that 1) his progress in uncovering how he communicates best will probably not be linear, and 2) we’re much less focused on the traditional sense of progress, and much more focused on empowering him, advocating for him, and fostering his sense of creativity and self-determination.
One last thought: Koimburi doesn’t speak right now. That doesn’t mean we wouldn’t like him to, or that we don’t think he will. But we want to clearly affirm that spoken language is no more valuable than other forms. Whether his growth at this stage includes communicating with spoken words, with sign language, or with an AAC device (a tablet where he can press pictures to put a sentence together), we are simply grateful to increasingly know what’s on his mind.
To learn more from autistic advocates on these topics, here are some great Instagram accounts to follow: @fidgets.and.fries @neuroclastic @the.autisticats