The most common question I’ve heard since I came out as an autistic person is, what was it about you that made you seek an autism diagnosis?
I’ve struggled to answer this because I feel like it contains several different questions and I’m not entirely sure which one a person is asking me when they ask it. (You might take note that struggling to answer a question because I am somewhat paralyzed by having to choose from all the many answers that I could give… is part of being autistic!)
So maybe I can unpack all of the questions within the question and answer them separately. This is what I think people might really be asking me when they ask me, what is it about you that made you want to find out if you have autism?
What are your symptoms? We want specific examples of how you are different.
This one might be the trickiest to answer because although I have always felt different from most people, I can’t think in terms of “symptoms.” Autism is my neurology, it’s the way my brain is wired, not something I “have.” So while I have always felt different from most other people, I’ve always just felt like me. Maybe it’s actually you neurotypical folks who are the weird ones. Ha!
It wasn’t really having “symptoms” that made me think I was autistic, it was seeing myself with crystal clarity in the experiences of other autistic women. But if you want some specific examples of how I think differently, well. I’ll try.
Sensory sensitivities were the first thing that came to my notice via Musings of an Aspie. Being too cold until suddenly I realize I am too hot. Being uncomfortable in my clothes, just, all day. Being on edge, angry, snapping at people, only to realize that there is a background noise that’s actually causing my bad mood. A lot of people have sensory sensitivities without being autistic, but I mention them because realizing what mine are and being able to manage my environment a little are key ways for me to feel good and do the things I need to do.
The longest running issue for me that has caused me the most pain in life is issues with social communication. Many people who read my blog and some on Facebook have mainly interacted with me via written word – this is where I am at my best, communication-wise. So the idea that I have trouble communicating may seem absurd. But verbally, in person or on the phone, I do. I wrote a whole separate post on that because it’s big and complex, but in a nutshell, I never really know what to say, what’s appropriate, what’s expected of me, where to begin and where to end, and a lot of times I just kind of shut down and go blank in social situations. This has always prevented me from achieving the kinds of connections I’ve desperately craved. And sometimes it is so discouraging or just plain exhausting that I don’t even try. So that can be challenging.
And the last area where I feel the most “different” is in executive functioning. I can detail that in yet another post, but the gist of it is that executive functioning is kind of the command center of the brain, the part of you that organizes, plans, prioritizes, executes, and manages all the little and big things you have to do in life. The simplest way to explain why executive functioning is sometimes a challenging area for me is that I get overwhelmed quickly, easily, and often.
But what was wrong, really – were you suffering?
That is a pretty personal question and no one’s outright asking it, but maybe it is implied. All I can say is, I was getting by, as I have always gotten by in life as an undiagnosed autistic. But I felt that getting by was not enough anymore as I have a husband and two kids who need me to do better than just get through the days. I have other family members I long to connect with more than I have. And I have things that I want to do that require me to get out of survival mode. Of course this diagnosis is for myself, but it’s also for all of the people who love me, and whom I love, too.
Am I autistic too?
There are a few people who are curious “what about me” is autistic because they think they might be autistic too. No, not everyone is on the spectrum, but certainly some people are out there who are undiagnosed but autistic. Women especially tend to be underdiagnosed and the big discrepancy in the numbers of male and female autistics is most likely due to underdiagnosis in females. So what I tell people who seriously think they might be autistic and seem to have a strong need to find out is, it’s worth looking into. I am really glad I did.
I also caution you that it can be expensive to get diagnosed, so look into what your insurance will cover, and women should try to find professionals who specialize in diagnosing women with autism, because not all of them recognize autism in women well. Autistic women are more likely to be misdiagnosed with depression, anxiety, OCD, ADD, etc. Don’t let that scare you off, but be aware of it.
If you want to read more, these links might be helpful:
The RAADS-R is designed to be used in a clinical setting but you can try it at home
The Aspie Quiz is another interesting self assessment tool
But why did you feel the need to label yourself this way?
I suspect that what some people mean when they ask this question is, why would you want to be known as autistic when you can easily pass for “normal?” If you ask this, you are assuming that autistic is a bad thing to be, something no one would want to be if they had the option to choose. It’s not. And you are also discounting the stress and the depression associated with “passing,” which for me have come to outweigh the stigma of autism.
If you are secretly wondering why I would want to label myself, I understand why you feel that way, because I once felt the same, until I learned more about autism, which is widely and unfortunately misunderstood.
Autism is not a disease or a kind of brain injury, it’s a neurological variant. It’s genetic, inheritable, and has always been part of the human species, but is only now being accurately diagnosed. It is also, however, a real difference in neurology and not just a personality profile. I’m not “just quirky,” my brain actually works differently from the neurotypical brain. It’s not better or worse, it’s just different. (Autistic self-advocates do not deny that autism can be disabling to varying degrees, but that still does not mean there is something “wrong” with any of us. Disability is a normal part of the human experience.)
So I feel a need to label myself this way because this is the way I am. I am not ashamed of it. Sometimes I am proud of it. But essentially it is a neutral facet of my being. Being my true self gives me immense satisfaction, as I think it does for anyone. Oprah made a cliche out of “Living Your Best Life,” but that’s because the idea of authenticity resonates with so many people. And for me, realizing, accepting, and declaring that I am autistic is a path to authenticity. Autism is not *everything* about me, but it’s an integral part.
So if you ask me why I want to label myself this way, to “come out?” – my honest answer is, why wouldn’t I? Why wouldn’t I want to exist in the world as my authentic self? Why wouldn’t I want people to know who I really am? Why wouldn’t I want to be free?
The only reason why not is fear. Every person who lives in a closet for one reason or another has to balance the fear of coming out with the pain of staying in. That fear has legit reasons so I don’t judge anyone for staying in. But I’m coming out.