Individual perspectives on autism & disability

Take a moment and imagine that someone calls you disabled.  Ask yourself, do you agree or disagree? What feelings come up for you? Based on your lived experiences, like your interactions with family, teachers, doctors, friends, and society more generally, how has your relationship with the concept of disability been shaped?

Even though many governmental organizations officially recognize autism as a disability, this doesn’t mean that all autistic individuals identify as being disabled. Members of the autistic community have such varied lived experiences, which contributes to whether we each identify as being disabled or not. Moreover, how we relate to the concept of disability differs as well.

In this article, we share how some of us at Embrace Autism identify with and relate to the concept of disability. Eva, Kendall, and I (Debra) share our AuDHD experiences and how they relate to disability, and Natalie and Hailey share their autistic experiences in relation to disability.

What does the term disabled/disability mean to you?

Eva: I understand disability as not being able to function according to certain standards of average human ability, creating either physical or mental/cognitive disadvantages.

Hailey: Admittedly, I don’t have a strong stance on the terms ‘disabled’ and ‘disability’. For me, the terms are very literal and my understanding is based on the definitions; I feel they refer to those who have and identify with having a limitation or disadvantage in one or more areas. To be clear, I think it’s important to state what those limitations or disadvantages may be (but don’t have to be) accompanied by incredible strengths as well; they aren’t mutually exclusive. It is absolutely possible to resonate with challenges in some areas while also acknowledging strengths in other ones.

Kendall: To me, disabled/disability describes the challenges you encounter while trying to fit into a system that’s at odds with your abilities.

Debra: I view being disabled/disability through the lens of the social model of disability. This means that I view disability as something that is largely dependent on society and the systems that are in place. To me, we are disabled if our needs are not being met in the current system. If society were more inclusive and accessible, then our needs would be met and many of the challenges we face would be supported. This does not make us any less autistic, or a deaf person suddenly able to hear, but it means that we would be able to more easily navigate in society. Would disability be a thing if society were truly inclusive and accessible? If it really is the social construct I believe it to be, then I am tempted to think it would not!

Natalie: It is a term used to describe something that limits a person compared to others who do not have the same physical or mental traits. It is a term that many people in society feel negatively about—something people don’t want to have.

Do you identify as disabled? Why/why not?

Eva:  I never used to. I’ve always objected to the idea that autism is an inherent disability, and argued that I may have some challenges, but so does everyone else; and that I don’t feel my challenges disadvantage me to a considerable degree. Additionally, I always felt I excelled in other areas, so I am reasonably able to compensate or specialize to such a degree that I don’t feel less able than others on the whole. For instance, I’ve never been that great socially, and back when I worked in a design studio, I wouldn’t have any contact with clients, unlike my colleagues; but on the other hand, I’m very detail-oriented and I have a good eye, so I would often spot mistakes that my colleagues would overlook. The fact that I had abilities that my colleagues did not have made me feel I played a significant role in the design studio. Yes, I couldn’t do certain things with ease that my colleagues could; but nor could they perform certain tasks that I could do with ease. It felt nice to complement each other in that way. However, I have recently been reconsidering my position. What I just wrote remains true, but I function well with a lot of structure and guidance from others. Now that I am my own boss and no longer have a lot of structure and guidance, I actually feel a lot more disadvantaged than I used to; I experience a lot of executive challenges due to my ADHD, and I feel less able to compensate for them now. Or rather, the fact that I no longer work in a team brings my disadvantages more to the forefront, so I feel more disadvantaged on the whole. This also emphasizes for me how contextual/situational disability can be; some people feel they are inherently disadvantaged, while others feel disadvantaged based on how society is structured. With more accommodations, and more specialized roles that people can fulfill, I suspect fewer people will feel disadvantaged as a result.

Hailey: I do not identify as disabled. For me, this is a very subjective perspective that I have for myself; if someone else shared all of my traits and experiences, they might choose to identify as disabled, and that would be okay, too. My reasoning is based on my perception of my functioning at this time in my life.

As an autistic person, I do acknowledge that I have challenges in some areas. However, for me, I have managed to accommodate myself and tailor my life so that those challenges do not feel limiting or like a disadvantage. I do struggle with social interactions, but that doesn’t impede my ability to work—especially considering my colleagues are also autistic. Before I became part of the Embrace Autism team, I worked independently as a graphic designer, where I ran a freelance business. I have managed to find housing stability, and I own my home. I don’t say these things to gloat, but to give context; while I certainly have challenges, I feel more advantaged than disadvantaged based on my traits, abilities, and experiences. For me, the term ‘disabled’ feels unfair to use toward myself, as I recognize how fortunate I have been.

With all that said, there have been challenging moments in my life. At age 18, before my autism diagnosis, I was unable to maintain employment, complete college, or maintain stable housing. I had 0 dollars in my bank account and heavily relied on the support of those around me because I was not coping. If I had been asked this question at that age, my answer might have been different.

Kendall: Yes, I identify as disabled. I have difficulty managing my life—paying bills, making appointments, remembering appointments, shopping, preparing meals, taking medications, driving, etc. I can do these things, but they often don’t happen.

Debra: I do identify as disabled. Many of my neurodivergent needs aren’t being met in my day-to-day life and in the environments that I find myself in—and so for me, this means that I am disabled.

Natalie: I do not think of myself as disabled. I was diagnosed with PTSD by age 5 and attributed my challenges to that. I also knew that something about me rubbed people the wrong way. I was more sensitive than others. I was “too” everything for other people—too much, too sensitive, too keen, too talkative, too loud, too, too, too… I assumed something was fundamentally wrong with me that I needed to fix. I never considered it a disability. You can’t unblind somebody, or un-autism or un-ADHD someone.

To have considered it a disability would mean there was not something wrong with me. I don’t think that blind person has something wrong with them. They are just blind.

I had some really dark times with this thinking of myself as flawed. Parasuicidality was a pretty much day-to-day thing which started at age 5. I don’t have that anymore since getting diagnosed with autism. Autism gave me a framework within which I don’t see myself as broken. I value the qualities that make up autism and find that I do just fine if I am left alone and can organize my environment the way I want.

I suppose that if I was to think of myself as disabled in any way, that it would be in terms of social naivety. I believe people are at their word, so I am gullible. And this is not something I see all autistics as being. Maybe it is a product of my being from a generation where the internet was not something I grew up with.

Do you have any negative associations with disability?

Eva: Yes, I do; I can think of two distinct ways in which disability brings up negative associations for me:

1. I feel a lot of shame about my executive challenges, in part because I compare myself with how I used to function. I try my best, but I can’t help but feel that I’m less capable than I used to be, and that bothers me a lot. I have certain expectations of myself, and I am no longer able to meet them. Rather than accept that this is how things are, I inevitably beat myself up about it. So the experience of being disabled in certain ways brings out a very negative thought process for me.
2. I’m hesitant to state this, but I can’t help but feel that many autistic people who identify as disabled have a victim complex. I’m not sure this is a factual statement though; it may very well be a personal judgment, because it triggers me when people constantly talk about what they can’t do, rather than focusing on what they CAN do. I like to be more pragmatic, productive, and positive, and I guess it feels very confrontational when others focus predominantly on the negative aspects of themselves to the point they characterize themselves predominantly by what they can’t do. I think the reason why I find this so triggering stems in part from my desire to have people be functional, positive, and happy; I don’t like it when people are having negative experiences that are beyond my control, but which may be within their control if they had a different mindset. I don’t know. I’m not suggesting it’s never valid to identify as disabled, and I clearly don’t have a coherent philosophy around disability. But yeah, I try to stay away from the notion of disability, for my own sense of comfort and wellbeing.

Hailey: I don’t feel that I have a negative or positive association with disability, but I will do my best to answer. I think I would feel a bit uncomfortable if someone described me as disabled, only because I don’t believe that it’s an accurate representation of my experience. Based on my particular compilation of traits and experiences, I don’t feel like I have a disadvantage compared to a neurotypical, so it just seems factually incorrect. There is nothing wrong with identifying as disabled, but that’s not the perception I have of myself.

Kendall: My negative associations are mainly based on societal expectations—feelings of frustration when I can’t manage as well as others seem to and failing to meet those expectations. So, internalized ableism to some extent.

Debra: Internally, I am very adamant about my belief that disability is not a bad/negative/shameful identity or concept. In the context of autism/neurodivergence, I view it as simply a reflection of how our society privileges some neurotypes over others. It is another axis of intersectionality along with racism, classism, sexism, etc. That being said, externally, I do experience some negative aspects of disability related to ableism. In particular, the judgements that some people/organizations/systems can make about a disabled person’s capabilities, value, and self-worth. This can rub off on me and I can also feel shame around having support needs, asking for accommodations, unmasking, or not being able to “be normal.”

Natalie: I also think that seeing myself as disabled may be used as an excuse by my brain. I sometimes wonder what would have happened if the way that I had been introduced to autism was being diagnosed as a child in the ’70s. Society discriminates against disability, so why would I want to have fewer advantages. It is bizarre; being disabled limits a person, and society further limits them by discriminating against their disability. Instead of helping them achieve their potential, society takes away that possibility.

I think anything can be described as a disability, depending on what lens you look at it through. There is a book called Elemental Island, where the predominant neurotype is autistic, and a neurotypical girl gets born into the world. When you look from this perspective, a neurotypical seems disabled. When I was first diagnosed, I also wrote a tongue-in-cheek post where I applied the DSM criteria for autism to non-autistics, based on autism being the predominant neurotype. I find more frequent lying, requiring small talk, and not having deep passions confusing. I like how I am, so I don’t have a negative take on autism.

Do you have any positive associations with disability?

Eva: No, I can’t say that I do. I mean, I think it’s powerful when people are able to function and find success and happiness despite their disability. But disability itself doesn’t bring any positive associations to mind.

Hailey: I do love that more people are recognizing that there is nothing wrong with being disabled and feel more free to identify as such. In many ways, we seem to be progressing toward a more supportive, inclusive society that is prepared to listen to the lived experiences of disabled individuals, which I think is incredible and absolutely necessary.

Kendall: Left on my own, I feel good. I also have exceptional abilities that help me do many things I enjoy. In my element, I excel.

Debra: I find disabled communities, and in particular BIPOC and queer/trans disabled communities who advocate for disability justice, to be incredibly intersectional and inclusive. For me, embracing disability and being part of the disabled community is also being part of a social movement that empowers disabled individuals to recognize that we are not the “problem.” Rather, the system is. Through the disabled community, I’ve also discovered the concept of community care, where in an ideal world, we are all working to support each other in meeting our needs as opposed to trying to fit into a system that only meets the needs of those with the most privilege. My perspective is that we are all “disabled” in some way by the systems of oppression that are in place, and being neurodivergent is only one aspect of this experience. I find it extremely validating to acknowledge how these systems are the root cause of why we face so many challenges and why our needs are not currently being met.

Natalie: I know that autism and ADHD are described as disabilities, so I have a positive association from that perspective. I greatly respect neurodivergent brains and what they can accomplish that neurotypical brains cannot.

As you can see, we all have widely different views on disability and how that relates to autism and our own autistic experience! Some of us identify as disabled while others don’t. Our reasoning is based on very unique positive and negative associations from our lived experiences.

All of our perspectives and relationships to disability are equally valid. At the end of the day, we are all still facing challenges as autistic individuals and we are all still trying to understand ourselves better and get the supports that we need.

Finally, it’s important to further emphasize that our individual perspectives are dependent on our own positionality, levels of privilege, and intersectional lived experiences. The 5 of us are all in positions where we have a lot of agency/choice around how we relate to disability. Some individuals and marginalized communities—for example, many Black and Indigenous autistics—do not have this same level of privilege. We cannot judge how others relate to disability, but we can advocate for more inclusion and accessibility for all autistics.