Learning About Autism Can Be a Minefield
The internet is inundated with information about autism. It comes in every format imaginable: articles, essays, pamphlets, podcasts, books, YouTube, and more.
There is so much that it can be difficult to navigate. When you’re new to the topic of autism, all you want is clear, accurate information.
If you’re an adult and suspect you might be autistic, you want information tailored to your unique experience. It can be really hard to wade through the massive amount of information about autism to find information that is applicable to you. You have to push past the thousands of pieces about autism in children. Then you have to wade through information designed for parents. Then you have to push past information rooted in the medical model that sees autism as a disorder or some kind of disease.
Even when you finally find information about autistic adults that claims to come from a neurodiverse perspective, it can still be a minefield to find helpful, accurate information.
When you are new to autism, you don’t know enough to know what is accurate and what is outdated. For example, I once read a neurodiverse book that directly stated that autistics do not have empathy. This simply isn’t true (see my essay Stop Saying Autistic People Can't Empathize). I luckily knew enough about autism at that time to immediately recognize the author’s claim as false, but what about those who are new to autism? They would immediately assume this as truth.
This is why reading about autism can be a minefield. It can supplant information that is false, outdated, or highly inaccurate. It can be confusing and disorienting.
For example, some articles talk about how autistics cannot make eye contact. Someone who is wondering if they might be autistic could read that and think, “Oh, well I can make eye contact, so I must not be autistic.”
The truth is that many autistics can learn to make eye contact.
In other cases, authors present autistic characteristics like they are absolute truths. In reality, autism characteristics exhibit a high degree of variability. This means that the intensity of a characteristic (like being sensitive to light) can vary depending on the circumstance, how much energetic capacity the person has in that moment, and far more (you can read about the autistic sensory system here).
Many unidentified autistics have also learned how to “mask” how they are feeling - meaning they can hold the discomfort internally and “push through.” Many people assume they cannot be autistic because they can choose to fight through when they are uncomfortable. They can force themselves to tolerate bright light or annoying noise. They can muscle through a horrible social interaction. Since they can choose to do this, they think they cannot be autistic. This is not the reality.
Reading about autism can also be confusing even when the information is accurate. For example, an author can present autistic characteristics that are absolutely true, but not necessarily true for every autistic individual.
When you don’t know your autistic identity well, it can be hard to know what applies to you and what doesn’t.
I’m not suggesting you stop reading. Besides, most autistics do a deep dive into research the moment they suspect they might be autistic. This is natural considering how much our autistic minds crave clarity and understanding.
I am trying to validate the very frustrating experience of trying to find information. This is why many people, myself included, choose to work with autistic coaches or therapists when they are new to autism. It helps to get their bearings.
It’s also why many autistics like myself choose to write about autism. We want it to be easier for the people that follow us to find accurate, helpful information.
However, even my words and experiences may not resonate with how autism presents for some autistic adults.
We need to give ourselves permission to accept what applies to us and reject what doesn’t. When I started learning about autism, I kept long lists of the things that applied to me. I even noted the common things I heard that didn’t apply to me.
We are currently in the Autistic Awakening - a term I designed to capture how our culture is in a period of rapid expansion in understanding autism. As more and more autistics are sharing their lived experiences, we are learning far more about autism. It’s hard for the science to keep up.
You have every right to define your experience for yourself. If something doesn’t apply to you, you can reject it. Keep what helps you and chuck out the rest. Keep what helps you live more fully and grounded.
Most of us autistics grew up distrusting ourselves. As you wade through the massive amount of information about autism, this is your chance to practice listening to yourself. Note what resonates with you and what does not. Piece together your identity based on your intuition.
This will take time. I find it typically takes about one year for late-identified autistics to find some grounding and understanding in their new identities. Trust it will come with time.
And if you find you need more help, you can always reach out for more support.
Thank you for reading. If you’d like to read more, sign up for my FUNletter or check out my book Grief is a Mess.