Why I Do What I Do & Divisions in the Autistic Community

I know that this post will get taken in different ways by different people. I ask you to read to the end before commenting positively or negatively. How often do my autistic comrades with less support needs interact with those with more? AND vice versa? How many of you late dx folks identify with those who were dx early? How many of you autistic folks who are Levels 2 & 3 according to the DSM can relate to those who are Level 1? Do you see us as all autistic or something else?

While there may SEEM to be a huge chasm between these groups, I believe that this is due to the insistence of NT society along with the medical, educational, and psychological industries and decades of indoctrination and internalized ideas of what is or isn't autistic. We have a lot more in common with each other than we are led to believe. Of course, not all of our experiences are the same and not all of us can relate to the same things as the other.

We have vastly different experiences and understandings of ourselves and what autism is. Some of us will not be able to relate to the positivity and the ideas of autistic joy, while others of us cannot understand why people can possible think that autism is a not disability. Some have been masking their whole lives, others don't know what the concept even is. Some will get extremely angry when we speak about our struggles, and others equally angry if we speak about the positive aspects of being autistic. Some argue that those of us who work cannot understand those who don't, and vice versa. That our struggles aren't the same. Indeed, all of our struggles are NOT the same.

But somewhere in between all of these things, however, exists a common thread. A common experience of relating to the world and how it relates to us. A shared experience and angst living in the NT world. I believe that the labels that are given to us by those who aren't autistic put us into camps from a very young age or early stage of learning about our autistic selves. We internalize them. We believe them. We recognize their truth, while also seeing their flaws. If I'm not making sense to you yet, stick with me. I am not a wordsmith and I have issues communicating and getting my thoughts out in a coherent way all the time. That won't stop me, however, from trying.

Whether the labels are about function, supports needs, masking level, ability to maintain social norms, or whatever, we recognize that we all have different ways of looking & being in the world and also can (but not necessarily) have trouble seeing the world thru another's eyes. Supports needs, functioning levels, masking levels, all can change over time. They are not static. They should not be a way to measure who we speak to and who we relate to more or less. These things can, and often do, change in either direction.

Now I'll get personal. I was dx (with Asperger’s) at 3 years old. I went thru the Special Education system and ABA for my formative years before being "mainstreamed". I was a "success" according to the educational, medical, and behavioral models of how we look at autistic people. Their goal is to make us "less a problem" to allistic adults as we get older. It left me with scars & trauma that I'm still dealing with 30+ years later, but OK, "mission accomplished". I moved to a new country and had to be re-diagnosed. While the “autism levels” did not exist when I was diagnosed as a child, the world has changed. People often think of those who were originally diagnosed with “Asperger’s Syndrome” as “Level 1 ASD” , but that isn’t necessarily the case. In my situation, it wasn’t. I was now, 30 years later, being diagnosed as “Level 2”, meaning I have significant supports needs.

Despite being a "Level 2 Autistic" I can live "independently" and therefore have "low" needs to an outsider, much like many who were originally diagnosed with “Asperger’s”. Sure, I can tie my shoes (poorly), remember to use the bathroom (usually), and work (sometimes). But I still have needs. I'm still legally & medically classified as "Level 2". Only I (and often my partner) can truly see that.

To the outside, and even to most of you, I'm "good". I have meltdowns often, cannot get out of bed for days at a time, have had major periods of Autistic Burnout in my life, get hurt on an almost daily basis, almost hit by cars on a weekly basis, cannot deal with even the most basic requests, need to be reminded to eat and bathe, etc If I didn't have the supports that I & my partner have enabled for myself, I'd be on the street. Probably dead. I think of that often.

The country in which I live provides little to no support for ANY autistic people, even those with the highest needs for support. What's worse, is that to the outsider, to the random onlooker here on social media, I am a "success". I am a coach. To some of you, I am a faker or even a con artist, taking advantage of autistic people. The reality is is that I am neither a success or a con artist. I'm simply an autistic human in my late 30's who has been struggling and living in a NT world for a long time. I'm simply one of the "lucky" ones who was forced and abused into complying who can speak to others about my experiences in the hope to change them for others. I'm simply an autistic person who "did what was asked" of autistic people by NT society and now needs to deal with the consequences of being simultaneously rejected by NT society as an autistic person and "not being autistic enough" as well as by parts of the autistic community for being "low supports needs" and even by many in the late dx community as "too negative" about the deficits of being autistic. No matter what I say or do, someone will be angry. Someone will place be in another box that isn't theirs. I want us to stop building boxes.

I want all autistic people to know about the experiences of others that aren't like their own. I want hyperlexic autistic folks to speak with those who aren't verbal. I want those who go to university to speak with those who don't. I want those who live independently to understand those who live in an institution. I want those of us who are utterly disabled by being autistic to speak to us who don't think that way. I want those who experience pure autistic joy to sit and understand those on the other end. Because we DO all have a common thread. Something which unites us, which is why we all ARE autistic. I want us to TRY to not internalize what everyone tells us what we are and what we should be. THAT is why I do this work. Because I have seen "both ends of the spectrum”. Precisely because I have friends and family who are both "autistic superheroes" who advocate for themselves and others who cannot even begin to know what the concept of self-advocacy is. We are all different, but we are all in the same boat too.

The more we are divided the more our rights and lives will be violated by those who wish to change us or remove us from society and the world. This isn't hyperbole, but something we all know is happening on a daily basis. That isn't to say that all allistic people want us dead or want to hurt us. Clearly not. But the system in which we live isn't supporting us and there are absolutely plenty of organizations and individuals who are ACTIVELY seeking to harm us. The majority are indifferent. Yes, I know that I will receive flack for this. I know I will be called an ableist (for different reasons), an idiot, someone who doesn't know how to communicate "properly", a charlatan, someone who "doesn't get it", privileged, and someone who hurts autistic people for profit. I'm used to it. I'm invalidated on a daily, invalidated by thousands on a monthly basis. AND SO ARE ALL OF YOU. I simply get it publicly for all to see. But we are all invalidated daily and it hurts. I want that to change and that's why I do what I do.

And yes, I am privileged. In that I am a white-passing MENA cis male holding a formal dx. I have it as good as almost anyone in the autistic community in terms of safety and privilege. I use that platform to speak up for those who don't have that same privilege. And yes, I am also victimized for being autistic. For being a non Christian in a Christian society. For speaking or walking and acting differently. Treated like a second-class citizen because I am multi-disabled. Like all things, there is nuance. The biggest nuance, to me, in terms of everything here, is that being autistic is complicated. There is no absolute. That can be hard for many of us who think in binary absolutes. I'm like that myself naturally, but I know that the world is more complicated. Humans are complicated.

Autistic people are all humans. We aren't one-size fits all and we all have different, yet shared struggles. This is amplified for those of us who aren't white cis males and have other disabilities and/or impairments. Anyway, I recognize that this may seem like rambling now and someone will get angry for my lack of being clear. So I will leave it to those who want to discuss these topics, and the nuance of being autistic in different ways while sharing a common thread to reply as they see fit.

And for the various naysayers - I am formally dx as Level 2, but recognize self DX as more than legitimate due to too many reasons to be listed here. I have both lived independently AND with others for support. I have studied in university and worked in a F/T high pressure job AND been unemployed and on benefits. I have been institutionalized and hospitalized in my life AND been a mentor to those who are in institutions & hospitals. I know how to travel by myself but also need to take weeks to mentally prepare and even then, often cannot handle it. I know what it's like to have a meltdown in public and be harmed by the police for it. I know what it's like to be picked on, shamed, blamed, and harmed. I am proud and happy to be autistic but also know the great challenges and pain that come along with it. I live in the grey spaces and nuance. It's there that we can relate to each other, even if we seem differently from afar. I know what it's like to be an autistic person who has both been removed from society & as one who has built an independent life. I see both ends and have lived it. That's why I do the advocacy work that I do.