We are quickly approaching the one-year anniversary of my son’s autism diagnosis. Today, I’m the proud, confident mom of a remarkable little boy who has proven that he will do everything he sets out to do. He will just do it his own way. He’s autistic and awesome and everything a little boy should be.
A year ago, I was not so sure of myself or my ability to be what my baby needed. I was so terrified of my own ignorance that the idea of autism threw me for a loop. I knew literally nothing about the spectrum. When I found myself staring into the kind eyes of a really gentle, upbeat doctor as he told me my child met criteria for an autism spectrum disorder diagnosis, I panicked.
How could I be the mom he needed?
It took me a couple weeks to wade through all the emotions. I felt obligated to read and internalize and memorize mountains of information. I was overwhelmed.
Then I decided to stop treating my son’s neurology like a riddle or a problem I had to solve, and start seeing his brain as a beautiful puzzle whose pieces were all present. All I have to do is watch him as he assembles the picture for me.
In order to understand what might show up in the bigger, beautiful picture, I started truly listening to the most valuable autism experts available to parents like me: autistic adults.
Doctors and therapists can help explain the science behind the spectrum, what to expect moving forward, and make appropriate, medically sound recommendations for your child. But if you want to know about lived experiences, there’s no better way than to listen to the people who have lived them. The internet has made it very easy to find people all across the spectrum willing to share their experiences. I have found that if I am willing to listen, autistic adults are willing to graciously talk me through a lot of situations where I’m just not sure what to do.
It’s 100% not their responsibility to educate ignorant parents like me. I have found that many autistic people choose to be forthcoming, honest and kind anyway. They are committed to the goal of educating people and furthering autism acceptance.
Here is a little collection of lessons I’ve learned by listening without arguing.
1. Most autistic adults I have asked prefer “identity first language.”
That means that most people would rather be called autistic or “an autistic person” than “a person with autism.” This can vary from person to person, but this is why I have chosen identity first language for my son. As one woman explained, “When someone calls me a person with autism, it feels like they are failing to understand that autism isn’t something I carry with me. It’s something that I am.” If my son ever expresses that he’d like me to adjust my language, I’ll do it — because everyone deserves to make choices about their own identifiers.
2. Autistic adults have big feelings about some types of therapy and intervention, and their voices deserve to be heard.
I am not going to tell you what to do for your child, and I’m not going to tell you what I do for mine. We all make our own best choices. But when deciding on therapies for your kid, it is a good idea to ask autistic adults what they feel was helpful to them, what was painful, and what was ineffective. You might be surprised at what works best and what doesn’t work at all.
There are therapies and interventions that are very helpful in furthering necessary skills. A good speech or occupational therapist or a dedicated educator might be able to help your child grow in ways you never imagined.
3. Many autistic adults are not hoping or looking for a cure. Like, at all.
Erin A. shares, “What I wish neurotypical people knew is that you can’t change our neurology no matter what. [Many of us] don’t want to change our neurology. We want people to stop being assholes to us.”
Of course, nobody speaks for everyone, but it’s important that you know the desire for a cure is not universal. Nor is it currently possible.
Anyone selling a “cure” for autism is probably an abusive, garbage person. If someone tells you they have a miracle solution, run. Anything you buy into is likely to be ineffective and useless at best. More often, these “cures” are traumatic and painful. If the trauma of a treatment causes your child to mask the way autism presents, is that really progress? No. It isn’t. Just don’t do it.
4. Presume competence, and set your kid up to succeed.
Simply put, that means assume your kid can do the things you ask if you work together to make it doable.
“We’ll use tying shoes as an example. It’s simple to a lot of folks but maybe your kid’s hands just … can’t figure it out. What can you do to help shoes be easier? Slip-ons. Velcro. Substitute the hard thing for an easier one,” encourages Ainsley T.
Erin A. adds, “Intentionally letting an autistic child fail at something simply to ‘let them figure it out’ or to try to get them to ‘decide to work harder’ doesn’t work and is cruel.”
Autistic kids might need to take a different road to the same destination, and they might need a little extra guidance. Enjoy the journey, and follow their lead.
5. Don’t confuse non-speaking with a lack of understanding.
A few months ago, I spoke to a woman who was non-speaking until she was over six years old. She shared that she has memories beginning around age three where she completely understood everything around her. She wasn’t yet able to use words out loud, but she fully understood verbal communication. If an autistic person doesn’t speak or uses limited spoken language to communicate, that doesn’t mean they don’t understand, nor does it mean they cannot clearly communicate. Don’t discount their presence by speaking as if they are not there.
6. You might have ableist ideas or use ableist language.
Yes, it’s embarrassing. Don’t argue about it. Ask how you can do better. If someone tells you that the way you are speaking or thinking about your child is hurtful to the autistic community, consider reframing your thoughts and adjusting your language. It’s part of the growth process.
7. Remember, there are as many ways to be autistic as there are people on the spectrum.
For example, some autistic kids, especially girls, are so adept at mimicking social skills that they are never diagnosed until adulthood, despite struggling in various, obvious ways through childhood. Autistic people can be intellectually disabled, average intelligence or exceptionally brilliant. Some of them speak early, and some speak much later than neurotypical kids. There are autistic people who never speak a word. Autistic people work in every field on planet earth, have every kind of relationship that neurotypical people have, and do everything anyone else does. You literally can’t make any assumptions about a person based on their diagnosis. Just like neurotypical people, each autistic person is a whole world wrapped up in one miraculous body. No preconceived notion is appropriate.
8. Parents of autistic kids are great for community, but we are not experts.
This is the most important lesson I’ve learned. Living with my son doesn’t really qualify me to speak to anyone else’s experiences. I will happily share everything we have picked up along the way with anyone who will listen. But honestly, after living this first year with a diagnosis, I’ve become an expert on my boy, not on autism. I like talking to other parents of autistic kiddos, but for me, an autistic adult’s lived experience is the most important story I have access to as a mom.
If you are a parent facing a recent diagnosis, you might be totally unsure what to do next. I can’t explain how important it is to get some perspective from autistic people.
And then take a deep breath and trust yourself and your kid. Autism might bring your child additional challenges, but it will also bring them opportunities to astonish you. You might not know anything about autism yet, but there’s no rush. You’ve been loving your kid since Day One. You’ll keep on loving them as you both learn. You’ve got this.