This one is for the parents and loved ones who were surprised by an autistic person’s diagnosis in teen or adult years.
Sometimes people talk about autism like it’s a childhood thing, like it’s diagnosed in babies and then rigorously trained out of children until their “deficits” are destroyed and they can become “normal” by adulthood.
So when a teen or adult you love is diagnosed, you might be startled or left reeling. How could this be? It doesn’t seem to make sense.
Some people find it easy to make peace with it and move on. However, some people find their memories tainted with guilt. If you have regrets about not taking action sooner, this is for you.
An autism diagnosis can make you revisit everything.
Once you realize that this is real, you might do some reading. You might learn the signs of autism and realize they were there all along.
Suddenly your memories feel different. That “focused,” “creative” way of lining up toys was a sign of autism. Those social difficulties? Autism. And not to mention all those sensory issues that the family just sort of learned to live with…
Then, for some people, the guilt creeps in.
“Maybe if I had noticed earlier, I could have put her in therapy sooner to help her with her sensory issues and developmental delays. Maybe her transition to adulthood wouldn’t be so difficult if I had just said something years ago.”
“I noticed something was different, but other people told me that everything was typical. I shouldn’t have listened to them. I should have fought for my child.”
“How did I miss all this? If I had just taken him to a specialist sooner, maybe we could have adjusted our expectations for him and he wouldn’t have suffered so much. Maybe his anxiety wouldn’t be so severe.”
“How could I miss something so huge? Am I even a good parent if I couldn’t tell that my own child had a major disability?”
Confronting the fact that you didn’t notice something important can be difficult. And it’s easy to fall into the trap of guilt.
But the trap isn’t where you belong.
It’s not your fault for not knowing.
Autism isn’t always easy to spot.
Not every autistic person is a nonspeaking, easily-upset toddler who stims intensely and only engages with facts about trains.
Many autistics don’t match stereotypes exactly.
Autistic masking, also known as autistic camouflaging, can also make autism harder to identify. This is the practice of concealing one’s autistic traits and superficially mimicking non-autistic behavior in order to gain social acceptance and avoid criticism or mistreatment. It’s especially common in autistic girls.
The autistic person doesn’t necessarily realize that they’re doing it, but they often start when other people (intentionally or inadvertently) teach them that they need to blend in with non-autistics in order to be accepted.
So the autistic person might do things like
- Studying things that their peers are interested in (such as collectible cards, dolls, fashion, or sports) despite not loving the subject area themselves
- Hanging out at the periphery of social groups to observe and then mimic
- Switching out obvious stims for more subtle ones (such as tapping a pencil or twirling hair instead of rocking)
- “Bottling up” emotions and developing anxiety or depression
This can help them survive at school and in other areas where non-autistic behavior is expected and rewarded. But it also makes it harder for people to identify the fact that they need help.
Other people missed it too.
How many people interacted with your loved one?
- Daycare providers?
- Extracurricular leaders?
- Camp counselors?
The list of people will look different for every child, but nevertheless, it’s probably a long one.
Lots of people didn’t notice that your loved one is autistic. You’re not special for not realizing it. Plenty of people had no idea.
Teachers are often the ones who notice autism. This is because they can compare the child to many of their same-age peers. Thus, developmental delays and “odd” behavior are more noticeable to them.
Many family members get used to the person’s quirks. Lining up toys is “just how they have fun.” Developmental delays are “because they’re just a little slow on some things.” This can go double in families with other autistic/eccentric family members.
So, if you didn’t notice, that’s not unusual. (My parents didn’t either. It was a doctor who first pointed out the possibility.)
Sometimes there are benefits of non-diagnosis.
Don’t get me wrong: having self-knowledge and access to supports is amazing. My diagnosis made my life better, 100%.
But there were some good aspects of growing up undiagnosed.
People didn’t pathologize my autistic behavior. When I spent lots of time on the swings daydreaming, it was because I liked the swings, not because I “didn’t know how to play.” When I had trouble learning to ride a bike, it was because I was “an intellectual,” not because I had “severe motor skill deficits.”
I did not feel like a normal kid. But I felt like I was an OK kid. I was different, but that was because I was unique and creative and intellectually gifted. That’s what people around me said, and evidence supported that, so I believed it too.
These things weren’t wrong. It’s just that I was also autistic the whole time.
Of course, this is my life, not everyone’s. Undiagnosed kids can also get labeled as “dramatic” or “crybaby” or “weird” (and to some degree, I was too). A lot of it depends on how adults decide to frame the behavior.
If your loved one grew up with mostly positive or neutral labels for their differences, then this was healthy. It helped them feel like it was okay to be different. That’s one of the biggest gifts you can give an autistic person.
Let go of what you could have done and focus on what you can do.
Maybe you helped your loved one feel accepted. Or maybe you feel like you didn’t do enough.
Set yourself free.
The past is permanent. You could have done a thousand other things, but you didn’t. This is a fact, and battling with facts is only going to make you unhappy.
You did the best you could at the time, with the resources that you had.
We all have regrets about life! It’s a sign of learning and growing. Instead of beating yourself up about something that you can’t change, start using your knowledge to think about what you can change today.
Move forward as a force for good.
Try learning about autism. Obviously, wikiHow’s articles are my go-to source. (Check the subcategories at the bottom.) I also have autism 101 articles for things that are less didactic and more explanatory.
Look to autistic adults to guidance if you need advice. We all used to be autistic kids, then autistic teens. There are lots of autism aspects that we “get” intuitively. Try the #AskingAutistics hashtag to reach out if you need help.
Start challenging the idea that different is deficient. Not all of your loved one’s quirks are bad things. Some are neutral or positive. Focus on being helpful and kind instead of judging. And remember, if you’re not sure, assume the best of them.
You can’t control the person you were, but you can change the person you become.
So become something amazing.
It’s not healthy to bury yourself in guilt over something you didn’t cause or control. It’s okay to forgive yourself. That way, you can move forward in the best way possible—for yourself and for the autistic person you love.