What It's Like Being a Neurodiverse Family in a Neurotypical World
Despite the word being six letters, it seems to be treated as though it’s a four-letter word, as if it’s something to be ashamed of. Something to fear. A worst-case scenario.
This past year, on top of dealing with COVID quarantines and not being able to see friends and family and my mom’s cancer coming back, my family has become a part of the neurodiversity crowd. All five of us have attention deficit hyperactivity disorder (ADHD), to varying degrees. This has been an eye-opening year for my husband and I. Things we thought were typical we realized are not so “normal” among the neurotypical, such as forgetting why you walked into a room, going from calm to furious with little emotion in between the two extremes, and getting overwhelmed by basically doing life, to name a few.
I always thought I was just an introverted, anxious person, and I probably am. But I also found out that, along with my new diagnosis of ADHD, I am autistic. This came as quite a surprise to me, and I didn’t know how to accept it. I think that’s partially because the rest of the world doesn’t seem to know what to do with autistics in general.
Let me back up. I went on this journey to see if I was autistic because my twins were both finally diagnosed with both autism and ADHD in early 2020. We suspected our son had it when he was 2 years old, but the assessor at the time said he didn’t. My husband and I just knew this was the wrong diagnosis, but we couldn’t do anything about it. We just had to wait and try to help him as best we knew how. In kindergarten, however, his teachers told us he needed to be assessed again, and we did, and here we are.
His twin sister was in a different kindergarten class (I needed them separated) and she struggled. I remember thinking at the time that she shouldn’t be having such a hard time in school already, especially for doing things I saw as normal kindergartener things, like not sitting still or being rude (both are things that are still not OK). She was getting punished for these things, though.
Now, in girls, autism presents very differently than in boys. (I realize this may only apply to those that are cisgender and I apologize, but I can only write and speak to that.) After doing some research on my own, I started noticing things in my daughter that made us think maybe she was autistic, too. She really seemed to present as having ADHD at least, but maybe there was more. She was always our “firecracker” with a big personality.
So we got her assessed. She came out with the same diagnosis as her brother: autism spectrum disorder (ASD) and ADHD combined subtype (hyperactive/inattentive). On paper, they are the same (twins, if you will), but in person, they could not be more different. It’s very true that once you’ve met one autistic person, you’ve met one autistic person. No two autistic people are going to be identical. They may have similar struggles perhaps, but they all present and cope very differently. I blame the media for perpetuating this myth of what autistics look like.
After she was diagnosed, it got me looking at myself. I started taking medication for my ADHD and it really helped. It helped me manage my ADHD symptoms, like staying more focused longer. But it allowed my autism to show more, and I began to see that I was a masker, like my daughter, and I just didn’t have the energy to mask anymore, especially with COVID and my mother’s health deteriorating.
For as long as I can remember, I had a hard time fitting in. I was able to fake it very well (I think…), but it always felt fake. I never found acting as expected came to me naturally. I didn’t feel like smiling all the time, but it wasn’t because I was sad. I also would chat with people, then think, “omigosh do I sound ‘crazy?’ Oh no, no one likes me,” and on and on. It was exhausting to try to act normal while worrying all the while that those around me could see through my mask of normalcy.
It was ridiculous. No one should have to live that way. I have always been so trapped inside my own head for my whole life. And it has been exhausting. I now know that life doesn’t need to be that way, that having to force myself to act a certain way isn’t natural. I’m finally starting to realize that I need to just be me, whatever that looks like.
Autism also tends to be seen as a problem that needs fixing, not as something to be celebrated or proud of. Of course, there are those autistics that struggle because of their autism, and that’s OK. Not everyone’s experience will be the same. But I think it’s important, as an autistic and as the mother of two (possibly three) young autistics, to show autism as not something to overcome, but something to embrace. If not for my autism, I probably wouldn’t have been such an avid reader or writer. My son excels at both math and reading, far beyond his age, and I attribute that to his autism. My daughter is an exceptionally talented actress and artist and she’s so very creative, and I think that’s because she’s autistic.
Autism presents us with challenges, that’s true, but it also gives us unique gifts and a unique perspective of the world that can be invaluable. When I told our kids I’m autistic, my twins were excited, but my eldest was actually disappointed she didn’t have autism. I was proud at that moment; we had made autism something to embrace, not to fear.
I still find life challenging, and I’m working through it. The world isn’t quite ready for us autistics to stop accommodating to the neurotypical way of living, but the more we advocate and educate, the more autistics will be understood. Being autistic isn’t a curse or something to cure or prevent. It is simply a different way of being, of seeing the world. Despite its challenges, I’m grateful I’m neurodiverse. I’ve always thought being “normal” is so boring anyway, and now I know why.
In the end, hearing I’m autistic has helped me see myself for who I really am. It was eye-opening, but hard to believe that after all this time — 36 years and lots of psychologists later — I finally found my truth. I found out that I’m not “crazy” and that there are so many others like me out there. That I’m not alone. Finding others like me — my tribe — has been helpful. Reading books and blogs of others with autism, especially women, shows me that everything I’ve struggled with my entire life doesn’t mean I’m weird, it just means I’m autistic.
So please remember that if someone may seem awkward, or put their foot in their mouth when talking, or not ask you lots of questions about yourself, or not look you in the eyes, or simply appear to ignore you, this person probably isn’t trying to be rude. They may be autistic, and they’re doing the best they can to survive in this neurotypical, alien world.