Frequently Asked Question

Autism, Identity, Neurodiversity

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?

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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:

Essential Reading from Musings of a Aspie

Underdiagnosis in Autistic Females from Seventh Voice

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.

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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.

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6 thoughts on “Frequently Asked Question

  1. Beautifully written. You write so wonderfully about extremely personal topics. It’s honestly one of the reasons I’ve followed your blog since pre-Miles days. You put so much thought into the why and how of the problems you face and then you can express your thoughts so clearly. Pretty awesome, indeed.

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    1. Thank you so much! What a lovely comment and thanks for reading all these years… Yikes, I bet there’s some stuff from 2008-9 that would really make me cringe if I read it now, haha.

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  2. Very interesting post!! Isn’t it relieving to finally have the confirmation you’ve been looking for for so long??

    I recently discovered I have ADD. Well, actually I was tested at a young age but was never put on medication because I was allergic. Since I was so young when I was diagnosed I obviously had no understanding of it, and then as I got older and my problems got worse, not knowing why I was so different was SO confusing to me. The reason my parents didn’t recognize the extent of my struggles was because I was so good at hiding it! I hid my problems from the world because I wanted so much to be normal.

    Life with ADD and no way of coping is very difficult to say the least. I am pretty much FULL of anxieties (social anxieties, random/unnesessary anger and frustration, depression, learning disabilities to name a few). Basically I am chalk full of random anxieties that I am not able to control. The worst part of this neurological disability is that most people just think I’m weird/lazy/stubborn. They have no idea that I am suffering because I come off as a completely normal person. When you mentioned that all your life you’ve been “just getting by”, that really hit the nail on the head for me. Just getting by on a day to day basis makes me feel like such a mediocre person living a mediocre life. I’m not as pathetic as I think I am, but I also don’t quite know my purpose in life and frankly I have nothing to identify with and that hurts sometimes. Yes I have a great job, yes I picked up a new hobby that helps take my mind off negative things, and yes I have the most wonderful man I could never have imagined I would be with. But theres nothing that I can latch onto at the end of the day that I can call my own. ADD can be devastating. Exhausting really. I’m so exhausted from trying to find just a little more happiness. I’m not looking for a perfect life, hell no. I am simply just looking for ways to cope with my high levels of stress and anxiety. I feel like if I had something to identify with, just like you identify with art, or reading, or like Trev identifies with music and the Truth Movement, I need something that I KNOW I am good at. I know it will come, but in the meantime I am just waiting for my moment to shine and this is frustrating for me. The best way to describe how I feel on a day to day basis is like sitting in the waiting room at the hospital, just WAITING for the surgeon to come out and tell you that your child’s surgery went well. But while you were waiting, just knowing that your child is under the knife and that anything could go wrong is probably the worst feeling in the world. This is what the waiting process is for me. I know its dramatic!!! but this is what I have to deal with! My brain has ways of telling me that things are far worse than they really are. I have gotten better since I met Trevor because no matter what he is ALWAYS there for me, always trying to make me happy, bless his sweet soul. But only I can make myself happy when it comes to who I am as a person. As I said I have made progress, so I do have faith that I will make it through and find something of intrinsic value. But just knowing what you’re dealing with is half the battle. That is why I am glad you finally found confirmation, because not knowing why you suffer doesn’t help much in the process of coping. So I hope now that this sort of clears your path as you continue you’re life as a mother/wife/artist. I know I have a lot of work to do, and I’m sure you do too, but hey, at least we can fight this together! 😉 Good luck Erin, the best part of life is that we are surrounded by wonderful people who love us deeply, so I will hold onto that 🙂

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    1. Thanks Julie! I am really glad you are in Trev’s life and in mine. I definitely relate to all of what you are saying… that feeling that things are worse than they seem or that something bad is about to happen, I also feel that kind of anxiety often. I also tested as “borderline ADD” on my evaluation by the way! I don’t know if you read the bit on an earlier post about this that my psychologist told me she believes the degree to which you are neurodivergent (which would include ADD) is sort of filled in by the depression and anxiety that comes with having to compensate all the time for being differently wired. That makes a lot of sense to me and sounds like you experience that as well.

      I am just beginning on this path of understanding who I am and what my needs are, so I don’t have much advice yet. But I think right now I am just learning about what it is that I need to be able to do better than merely survive – sometimes it’s alone time, sometimes it’s music, sometimes it’s silence, etc. Letting people know that I just *can’t* do something, at least not at the moment, without feeling ashamed – can be difficult, but necessary for my sanity and happiness.

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      1. Yes Trevor did mention to me that you were ‘borderline ADD’. It honestly did not surprise me. I think there are many similarities between all these various neurological abnormalities, but there is such a big spectrum so it makes it difficult to pinpoint each individual’s weakness (for lack of a better term). But yes, it takes learning what you need to do personally to maintain some sanity because life should be much more than just surviving. But I feel like you and I are very strong individuals, but unfortunately it has been hidden by our stresses/anxieties. But I’m ready to face my fears and sort of reconnect the ‘faulty wiring’ in my brain that has been haunting me all my life. Its time to show the world what we are made of!! 😉

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