I’ve been eluding to this subject for the past few posts, but I decided to just come out and write about it. It’s been on my mind a lot lately, and I’ve been wanting to say what’s been going on, so I’m just going to come out and do it. Here goes …
After college, I worked in the field of services to people with developmental disabilities for about 9 years. Early on during that time, I met the first people I had ever met who had been formally diagnosed with autism. I say it that way because I’m sure I had met autistic people before then, and just didn’t know, or they weren’t diagnosed. The first (formally diagnosed) autistic person I met had the kind of stereotypical qualities you think of when you think of autism - he was a savant when it came to maps and geography, he couldn’t make eye contact, he flapped his hands, and his tone of voice was atypical. Over the next several years, I met many more people with autism, who all had the kind of stereotypical presentation, although each of them had their own personalities and quirks and interests and humor.
I think you’ve probably heard the phrase “everyone is a little bit autistic” before. While that phrase is definitely considered problematic by the Autistic community, it had been in my head for years and years. I would see people out and about, or interact with people in various capacities, and think, “yeah, they’re probably on the spectrum.” Meanwhile, I was constantly perplexed by myself - I had received several diagnoses from professionals, and the idea that I was autistic never even occurred to me. I was confident that I knew what autism was, and I knew that I never fit with everyone around me in terms of how my brain and my emotions work, but based on what I “knew”, I couldn’t think of myself as autistic.
Fast forward to January of this year, when I was working with my incredible therapist who said, “have you ever thought you might be autistic?” I’ve written about this in previous posts, but my initial response was “no way!” I didn’t think it was possible, and I couldn’t even process the suggestion. However, it kept creeping into our conversations, which prompted me to do a TON of research, and I eventually came to the conclusion that it might make a lot of sense. My therapist and I talked about it a lot more, and in June of this year, I decided to pursue a formal diagnosis.
The diagnostic process was intense. It pretty much ate the entire month of July for me. I filled out several self-assessments, Russ filled out an assessment about me, and I had three long appointments with the diagnostician. The second appointment was especially brutal, as it was the testing portion. I was exhausted for days afterward. During the third appointment, the diagnostician reviewed my results with me, and ended up formally diagnosing me with autism, as well as confirming my already received ADHD diagnosis, and officially refuting the BPD diagnosis I had received.
I’ve now read three books about autism in adults, and the one book - “Unmasking Autism: Discovering the New Faces of Neurodiversity” by Dr. Devon Price - I have read three and a half times. I always wondered why I could understand and relate to the people I served in my previous jobs, and now I know. The books I’ve read have made my life make so much more sense than it ever did before. I have infinitely more compassion for myself than I ever did. I finally have an answer as to why I’ve always felt so different from everyone around me. Things just click now in a way they never did before.
I’m currently listening to the audiobook version of “We’re Not Broken: Changing the Autism Conversation” by Eric Garcia. It’s a really interesting read, and I ended up also buying it on Kindle so that I could alternate between listening to and reading it when the opportunities present themselves. The author talks a lot about the divide between Parent Advocates and Self Advocates. When I worked in the field of services to people with developmental disabilities, I almost exclusively heard from and interacted with parent advocates, who believed ABA (Applied Behavior Analysis) was instrumental in progress; who swore by the organization Autism Speaks; and who were primarily concerned with keeping their kids safe. Now that I’ve been doing so much of my own research, I’m learning how much of the self advocate community LOATHES ABA, considers Autism Speaks to be a hate organization, and is primarily concerned with autonomy for autistic people. The parent advocates I worked with would often talk about “high functioning” or “low functioning” autistic people, which are labels that the self advocate community outright rejects.
I feel like I occupy a pretty unique space. I worked for a little while at a school environment that utilizes ABA. I saw how some of my colleagues used ABA in a punitive way, and I saw just how abusive that approach can be. I also saw the practical applications of appropriately implemented skills teaching, like helping students learn how to use the bathroom independently. Looking back on that experience now, I see the benefits of helping people learn skills through positive reinforcement and coaching, but I can say that I believe that ABA has too much potential for abuse; creates too much of a power imbalance; focuses too heavily on erasing what makes autistic people special in order to make them compliant; and can definitely be traumatizing.
There are other things to consider, though. The “high functioning/low functioning” terminology is no longer acceptable, but the self advocate community uses the terms “higher support needs” or “lower support needs” to describe what kind of help different autistic people need. I would say that I am someone with lower support needs - I am verbal, I am able to be safe and do activities of daily living independently, and - while I do have needs that I cannot fulfill independently - I have been able to build a support system from natural supports, and that support system helps me take care of myself. There are a lot of autistic people with higher support needs. I have worked with individuals who will run into traffic because they are not aware of the danger it presents. Social cues are often difficult for people with autism, and I remember working with a young man with autism when he hugged another man who was using the urinal. While I believe ABA is problematic (at best), I do think it’s important to acknowledge that there are a lot of autistic people who need intervention for their own safety and well-being. It’s just time for a new approach to intervene.
Anyways, I didn’t mean for this to be a blog post about ABA, but … my blog posts have been a lot less cohesive lately anyways, so I’m going to allow myself to have gone off on that tangent.
Understanding myself as autistic has been profound. Suddenly I’m looking back on all of these life experiences I’ve had and realizing how my neurotype impacted the way I behaved and interacted and conducted myself.
I mentioned the book that I’m currently reading/listening to. The title of that book is “We’re Not Broken”, and that title is the main reason I opted to read the book. I had thought of myself as broken for so long. I thought there was something profoundly wrong with me, something innate about me that made me never feel right. The things that other people just seemed to get never made sense to me. The unspoken and unwritten rules of socializing (in its many forms) needed to be explicitly spoken or written for me in a way they didn’t need to for other people. I thought it was unique to me, that no matter what diagnosis or label I received, I never really got an answer for why I am the way I am. Now I finally feel like there’s a framework to understand myself, and the amount of relief I feel is indescribable.
There’s so much to say, and I have a feeling that I’ll be saying a lot of it in this blog going forward. I want to write at length about my special interests. I want to write about how autism affects a marriage. I want to talk about the “autistic people are like French people” analogy I recently heard. I could go on and on about this topic, and in future posts, I’m going to let myself do just that.
The last thing I want to say in this post, though, is the operating system analogy. I heard an autistic comedian refer to autism as an operating system (video posted below). She said that neurotypical people are like iPhones, and autistic people are like Androids. When you’re living in a world of iPhones and comparing yourself to them, you’re going to feel broken when your system works so differently as an Android. But it’s not that you’re a broken iPhone - you’re an Android, with a whole different operating system that doesn’t make you better or worse than anyone else, it just means you operate differently. This has been a really great analogy for me, and it’s helping me frame everything I’m coming to understand and accept about myself.