A selfie of me wearing my purple noise-cancelling headphones and mint green jacket
April is Autism Acceptance Month. I tend to have a lot to say about autism, having really interacted with it from almost every angle. Autism is a big topic, and covers a huge range of experiences and types of people. Because of the way autism impacts people’s lives, it can be a tough topic to talk about, and the language around it is constantly evolving.
After I graduated undergrad, I moved to Boston, MA, and got a job working in an after-school program with teens and young adults with developmental disabilities. That was my first exposure to people who had been diagnosed with autism, and the teens I met who are on the spectrum are some of my favorite people I’ve ever met. The stories I have about my time working in that program and at that job are some of my favorite stories from my entire life. I met some autistic people who had the kind of “Rain Man”, stereotypical presentation of autism, but I met a lot more autistic people who had a broad range of interests, knowledge, personalities, sensitivities, and preferences. One of the moms of the teens was also the director of special education for the school district, and early on in my time at that job, she said to me, “If you’ve met one person with autism, you’ve met one person with autism.” She truly believed that no two autistic people were alike, and having that seed planted early on in my time working in that world was a huge benefit to me going forward.
We moved to Ohio in 2011, and I worked in the field of services to people with developmental disabilities from 2007 to 2015. During that time, I met a lot of people who the world would “never guess” were autistic, as well as people who were completely non-verbal and were more “visibly disabled”. I somehow seemed to always have an innate understanding of how to interact with the people in this world, and always seemed to understand - better than the vast majority of my coworkers - how to recognize and meet the needs of the autistic people I was tasked with caring for.
For a little less than a year during that time period, I worked in an environment that used ABA therapy. Applied Behavior Analysis (ABA) is an EXTREMELY controversial topic in the world of autism. A lot of autistic people loathe ABA, while a lot of families of autistic people sing ABA’s praises. I have a hard time describing how I feel about the topic of ABA, because in theory, it can be used for good. I saw ABA used by compassionate professionals who wanted to truly help autistic people be able to do things like use the bathroom independently. And honestly, most of the methods that parents of toddlers use to teach the alphabet or basic daily living skills could easily be categorized as ABA methods. However, I saw firsthand how ABA can VERY EASILY become a tool for manipulation, abuse, and dehumanization. The vast majority of the time, I saw coworkers using ABA to make the teens I was working with “less autistic”, and that was a deeply troubling thing to be around. Thinking back on that time, I wish I knew then what I know now. I wish I had been able to cast a more critical, analytic eye on the methods that were being used. So many of the young adults who were in that program were distressed the majority of the time, and seeing it for what it is now, I absolutely understand where that distress was coming from.
I left the world of services to people with disabilities after my dad died in 2015. I had done a lot of caretaking for my dad in the last month or so of his life, and the intense caretaking that I did for my dad until he passed made me feel like I needed a career shift away from caretaking. I sometimes regret having made that career shift, but I’m very happy with my career right now, so I guess it all worked out.
Aside from the work I was doing, I was also in therapy. I have been in therapy since 2003, and for 20 years of that time, I could not figure out what was “wrong” with me. I felt broken, and none of the answers that professionals were coming up with seemed to address what I was feeling and how I was experiencing the world. Despite the fact that I had been working with disabled people for so long - and had the ability to inherently see and relate to the autistic people I worked with - it never occurred to me that I myself might be autistic. I was tired all of the time, I felt like everything I did in my life took significantly more effort than it did for everyone around me, and I would have these wild physical symptoms that indicated deep dysregulation, but the idea that I might be autistic didn’t ever cross my mind.
I first shared the revelation of my autism diagnosis here on Daniel Chooses Love in August, after some intense deliberation about whether or not I wanted my being autistic to be public knowledge. Then in January, I wrote a reflection on what life was like before the autism diagnosis (BTAD), and what it’s been like after (ATAD). It is not an understatement to say that receiving a formal autism diagnosis has been the most significant, powerful thing that has ever happened to me. I’m not going to detail the entire process that led to my being diagnosed as autistic again, but I will say that the thing that had the biggest impact was reading the book Unmasking Autism by Dr. Devon Price. (Quick note: Reading “Unmasking Autism” made me want to learn more about Dr. Price and follow him on social media, and I had a really hard time with a lot of the content he posts on his social media accounts and on his Medium platform, so while I HIGHLY recommend his book, I also suggest that maybe you take the book as it is and refrain from following him elsewhere.)
I wrote all the first part of this blog post on April 5th. I saved it as a draft, with every intention of coming back to it and continuing the train of thought. However, life happened, and specifically (and ironically), autism happened. The month of April has thus far been characterized by the ways in which my autism has caused lots of struggles, and while the completionist in me makes me want to pick right up where I left off, I think it would be more genuine and more authentic to talk about the realities of my autism this month.
You may know that autistic people often find deep pressure to be regulating for our emotions. There are a lot of autistic people who use weighted blankets, myself included. Something that I find to be extremely regulating is touch, being hugged or cuddling. I had surgery on March 5th, and the recovery from the surgery prevented me from being able to be touched. In late March, I ended up getting the worst cold I’ve ever had, which necessarily meant that touch was out of the picture - who wants to cuddle when they’re sick? After I started to feel better, my husband caught that same awful cold, which prolonged the period of time without grounding touch. This extended, almost 6 week period of little to no touch meant that I ended up going without the grounding and regulation that touch provides for me.
Additionally, I have been anticipating a stressful situation that I will be experiencing this weekend. It’s a complicated situation, and I’m not really interested in airing dirty laundry, but the gist of it is that I’ve been trying to resolve tension in a relationship and have been met with a lack of willingness on the side of the other person to resolve the tension, and now I have to spend time with that person. Something in my brain - a thing that I am positive is related to my autism - does not know how to process a situation that has no resolution, and the frustration and helplessness I’ve felt around that situation has made my emotions volatile. What’s especially difficult is that when I try to put the frustration out of my conscious mind, the subconscious anxiety manifests physically. For the entire month of April, I’ve been getting intense headaches, have experienced a lot of insomnia, have had all sorts of stomach issues, and will suddenly feel overwhelmed and unable to breathe because of sensory stimulation that would normally be completely fine. So my equilibrium has gone out the window, and it has impacted pretty much every aspect of my life.
Autism keeps showing up in other ways too. I’m sure you’ve heard about what the current HHS official has been saying about autistic people, and to know that those things are being said in the public sphere has contributed to a general sense of unease whenever I’m out in the world. My best friend posted something on Facebook about autism, and I interpreted it so differently from how it was intended that it led to some short lived tension between us. I signed up for email alerts from the Autistic Self Advocacy Network (ASAN), and while it has felt good to be connected to that world, it has also meant that I’m getting regular reminders of how people like me are perceived by the world around us.
The other night, Russ and I had a big fight, which is extremely unusual for us. We quickly resolved it and are better and stronger for having gotten through it, but I attribute the way I lost my temper and misinterpreted so much of what was said to the impact of my autism. I have felt so dysregulated for so long, have had so much emotional tension building up around the situation this weekend, have been physically unbalanced for an extended period of time, and have been getting constant reminders of the ways in which I don’t fit in the world, and I think that all of those things boiled over into me being unable to prevent myself from having a gigantic meltdown.
In the aftermath of the argument, when we were talking through it and finding resolution, I admitted to Russ that I have been hating my autism lately. I have hated feeling so many physical manifestations of emotional and psychological stuff that I have not even been consciously aware of. I have hated my need for total clarity, directness, and sensibility in everything I do, because the world has been so indirect, ambiguous, and nonsensical, and it is not within my control to change that. I have hated being aware of my need for physical grounding and knowing that life circumstances have prevented me from getting that grounding - which is no one’s fault - but that knowing that those circumstances are the reason it hasn’t been able to happen has not meant that I am okay without that grounding. Additionally, knowing that I am so dependent on another person has made me feel awful about myself. April has repeatedly shown me the ways in which my communication is unlike that of the people around me, and feeling that difference has led to feeling extremely isolated.
Prior to this stuff, I felt really good about being autistic. I had all sorts of positive things to say about it, and about how receiving the diagnosis was so affirming and validating for me. I finally felt like I had answers for why I operate so differently from most of the world around me. But I think maybe I had rose-colored glasses on. I think I believed that knowing the reason for my challenges meant that they wouldn’t be challenges anymore. This month (again, it’s ironic that it’s Autism Acceptance Month) has proven that those things definitely continue to be challenges.
And there are some new challenges too. Now that I understand how important to my health it is to unmask, I’m afraid that I won’t be able to appropriately mask in the situation I’m about to find myself in. That masking was instinctual before my diagnosis, and now I’m not sure I’ll be able to do it at all. There are challenges associated with finally knowing the things that help to regulate me and understanding that getting those regulation sources is sometimes just impossible. Now that I’m aware that I’m autistic, I’m also understanding the threat that is posed to me by the things RFK Jr. is saying. There’s just so much to contend with.
I wish I had a point here. I usually like to wrap up my blog posts with closing thoughts, or some sort of poignant closing statement. I don’t know that I have that this time. I guess you can draw a conclusion about autism - its impact, its varied presentations, its representation, etc. - from this post. I’m hoping I can get back to a place of peace with being autistic, or regain the compassion for myself that finally having a diagnosis gave me. But I will ask that if you could send a little positive energy my way, I would greatly appreciate it.