Three: Am I autistic enough? Support needs
Exploring my autistic characteristics in terms of the level of support I require to succeed
In this series of posts, I will explore different aspects of autism and how I understand myself within each of them.
As I process my autism diagnosis, I find myself going through cycles of doubt, wondering if I can really “claim” this label, whether I can actually be a part of this community that I find so attractive and supportive, of whether I actually belong here, or if this is yet another example of a group that I want to be a part of but don’t really fit into. When pondering the question of whether I am really autistic, of whether to overcome my self doubt and accept the diagnosis, of whether I biased my diagnostic process by doing so much research beforehand and coming to recognize myself in the writings and voices of autistic people, the thing that gives me the most doubt is the question of support needs.
Some autistic people have higher support needs, and some have lower support needs. Often, you would be surprised at which is which. As I learned in Eric Garcia’s powerful book, We’re Not Broken, sometimes the people who appear the most independent in fact have elaborate support systems that are hidden from view. Some autistic people need constant care, and some don’t need much support at all.1
If you asked me to describe my support needs, my reflexive answer would be that I have none. I never have had any needs. I’ve been completely independent and “functionally competent” my whole life. That is, I’ve never had any trouble meeting my basic needs in terms of being able to live and operate independently as an adult. This fact is the thing that nags at me most and makes me think I must not really be autistic. But is it true? Is it really that simple?
School needs
I found a note from my third grade teacher in a box of things my parents saved from my childhood. It was an end-of-year evaluation written about me for my parents. The first paragraph is below (I’ve blacked out my name for now.)
When I read this note, two things surprise me. One, I’m surprised it starts by describing my friendships. Autistic kids don’t have friends, do they? (more on that in a later post). Two, I was fascinated to read that I had “needs” that I learned how to articulate in third grade. There were tasks that I found “unmanageable” and at age nine I learned, apparently, how to ask for accommodations. These simple few sentences helped me reframe in my mind what it means to have “support needs”. What I’m realizing is that not only have I had needs for much of my life, but I learned at a very young age how to adapt to those needs. In third grade, I started asking my teachers if I could change the assignments they gave me to something that would still demonstrate and develop the appropriate skill, but which I would find somehow more manageable than the assignment the teacher had originally designed. I don’t believe my parents were involved in these discussions or intervening on my behalf, which surprises me. I figured out how to negotiate my needs with the teachers, and they were willing to listen and work with me (I find this somewhat amazing, and it makes me happy for, and proud of my nine year old self).
At this time I was in a small, unconventional private school, which lacked the structure, rules, and standards of a traditional public school environment. This, I’m sure, gave my teachers much more flexibility in how they reacted to my needs. If, for example, the teacher who wrote this note had refused to alter my assignments, saying that it wouldn’t be fair to the other children or that they had to stick to the state mandated curriculum, I wonder how different this evaluation would be. “He refuses to do work as assigned and is unable to manage the tasks that other children manage with ease” I imagine this letter saying. And then what? Would I have had tantrums because I was unable to manage the tasks and the teachers wouldn’t make accommodations? Or would I have simply failed in the tasks? Would I have been referred to a special education program? I have no memory of any of this, so finding this letter feels like a gift, providing a small window into the details of my nine year old life. It feels like “evidence” to me, which is helpful to counter my tendency toward self doubt.
Two years later, I transitioned to a conventional public elementary school. My parents don’t recall any significant challenges, and looking at my report card from that year (along with a note from the teacher that was saved with it), it looks like I had mostly B and C grades and no reports of any issues. After that, I would become an A or B student for the rest of my schooling. I was never evaluated for special education or any kind of special needs (as far as I know). I don’t think this means that I didn’t have any needs, but rather that I was able to work out my needs directly with my teachers, or that I was able to get by at a reasonable level even if I didn’t fully understand the subject. In math, for example, I was constantly confused and always felt that I didn’t really understand why the answer was what it was. But, by “showing my work” (and getting credit for incorrect answers that showed my logic in problem solving), spending hours on problems that may have taken other kids much less time, and working closely with teachers, I was able to do well in school. My parents were also extremely supportive, getting me tutors when I needed extra help, and not giving me any pressure to achieve certain grades or meet specific expectations.
Work needs
After college, as I started working, I found challenges that I could not quite articulate. The first summer after graduation I worked at an Indian restaurant in Washington DC while I waited for my “real job” to start in the fall. The restaurant was busy and stressful. I would wake up in the middle of the night from nightmares about things going wrong in the restaurant - me bringing people the wrong food or making other mistakes, customers yelling as I fell more and more behind with taking orders, running food from the kitchen, and clearing tables. The kitchen was hot, and noisy, and had the most intense smells from the mass quantities of spices and herbs. The dining room was crowded, felt cramped, and was hard to navigate. Perhaps oddly, I coped with the stress by not eating. The staff ate when the last customer was gone, often around 11:00 PM. I told myself it was unhealthy to eat so late, and I took pride in the discipline that I could exercise in abstaining from food. It gave me a sense of control that was otherwise missing from my life and my routine (there is a lot more to say on this topic, but that is for another essay).
That fall I started the job I had moved to DC for, as a teaching assistant in a private elementary school. I had failed in my attempts to explore office life, both corporate and non-profit, in different internships during my college career. After those experiences, I felt hopelessly incompetent and unable to navigate the world of working adults. So, I was drawn to private school teaching assistant positions as a viable thing for an educated person to do, who had no idea what they wanted from life, but who knew they didn’t want to work in the corporate world, and who lacked teaching credentials and couldn’t get a job as an actual teacher. My way of seeking accommodation in the professional world was to avoid that world all together. In the school, I felt natural and free with the children. And because I was not the “real” teacher, but just an assistant, I didn’t have to understand the curriculum, to be accountable to parents or administrators, or to worry about the details that would make me a good or bad teacher. All I had to do was talk to and relate to the children.
I remember that after the school day was over, the teaching assistants were expected to join the head teachers for afternoon meetings. These meetings had no defined end time, and it seemed that nobody had any sense of urgency or any place they’d rather be. I remember thinking that this was an outrageous imposition on my time, and I only participated with great reluctance. I would insist on leaving after 30 minutes, saying that I had another job that I needed to be at. (This was partially true - I had another job, but I technically didn’t “need” to be there at a certain time. I was moonlighting as a freelance writer for a dotcom startup). I found the meetings ridiculous and unnecessary, and at every one of them I would get out of my seat at 4:00 PM, look at my watch and remind everyone that I needed to run. The teachers found this annoying, I’m sure, and the other teaching associates may have resented it. They, too, were all recent graduates from private colleges, and we all were paid the same poverty level salary to do the same work, and somehow I thought I was “special” and didn’t need to sit through the afternoon meetings. The other assistants would go for happy hour after work and they all became friends. I did not participate in those activities, not because I knowingly avoided them, but because I never hung around long enough to get invited, and it never occurred to me that colleagues would do such things together.
I had “needs” in this professional environment, but I didn’t know to call them such at the time. If I had approached the situation knowing that I was autistic, I probably would have explained that at the end of the day I feel overwhelmed and exhausted, and sitting down in a meeting that had no agenda and no defined boundaries at that time was confusing and anxiety inducing. It was hard for me to follow the conversations, I was restless, claustrophobic, and irritable. I need to go for a walk at that time to help me calm down from a day of being with the children, and to help me recover emotionally. If I had known how to articulate what was happening, we probably could have worked out a simple accommodation. For example, perhaps we could have done the meetings in the morning before school started. Or perhaps we could send out an agenda beforehand and set a time limit, or determine which topics required me to be there, and which topics it was OK for me to skip. Instead, I alienated myself from my colleagues by appearing “difficult”.
I left the teaching job midyear for another opportunity. This was 1999 - the height of the dotcom era - and the website I had been moonlighting for wanted me to work for them full time. I didn’t leave the teaching job because I couldn’t figure out how to ask for accommodations, but what attracted me to the dot-com job was the people I would be joining. They seemed to “get” me. They wanted to know how I wanted to work. They were more interested in the work I produced than in when or where I produced it. If I took a nap in the middle of the day, on the couch in the office, they didn’t even blink. If I left the office spontaneously to go for a run, they didn’t ask any questions. We had a meeting to talk about what we each needed and how to let each other know if we needed a break, or if we were getting frustrated, or if we were in a bad mood. I’m sure I worked vastly more hours for this company than I ever did for the school (nights, weekends), but it didn’t feel like it. I felt happy and balanced, not exhausted. It was an early lesson for me in the kind of environment that I could thrive in.
When the stock market crashed in 2001, my company crashed with it. But, I took the experience of that company with me and compared it with every other job I got. Because it was one of my first jobs, it set my expectations. I had no idea at the time how unusual that environment was, but I felt comfortable after that experience asking for that level of autonomy and flexibility. I have been attracted to employers that allowed me to “craft” my job to fit my strengths, who focus on outcomes rather than activities, and who allow for flexibility in when and where work gets done. I’ve taken these expectations to low-wage jobs that didn’t require a degree or any special skills, to non-profit work, to large corporations. By knowing what kind of environment I need, I’ve been able to thrive. I recognize that I have the privilege to do this. I am a white, cisgendered man, who has a degree from an elite private college, and an MBA. Those attributes have given me options that others don’t have and I want to recognize that without that privilege, I don’t think I could have sought out, asked for, and found the kind of employment situations that have helped me thrive.
Now that I have the language of the autistic community, I recognize that my early work experience at the dotcom taught me an invaluable lesson - that I am not the “problem”; the “problem” is the environment I am in. I was able to recognize that the my early experiences as an intern - which by all accounts were disastrous for all parties - were not because I was a clueless, awkward, ill prepared, naive, mind-wandering idiot, but because the environment of those companies was not accommodating of the way my brain works.
Examining my past through this lens has helped me see where I have support needs and how I have been able to mold my life to accommodate those needs. By far, the area of my life where I have had the most challenges, and the most needs, is in navigating social dynamics and relationships. That will require a separate, dedicated post to reflect on properly.
Garcia, Eric. We’re Not Broken: Changing the Autism Conversation. 1st ed., Houghton Mifflin Harcourt, 2021.