“Autism acceptance” means all autistic people…
9 minute read
April 23, 2024, 10:20 AM
For those not aware, April has been designated as Autism Awareness/Acceptance Month. I tend to fall more on the “acceptance” side of things, since it’s not so much about making people aware about autism and autistic people as it is to accept us for who we are, and for them to not infantilize or otherwise behave patronizingly towards us. I also feel as though there are a lot of misconceptions about autism, and the activities that various organizations have put on in recognition of autism have not done anything to help dispel these misconceptions. The biggest thing that I’ve noticed is that the focus is often entirely on children, which makes me think that too many people seem to believe that autism is something that just affects children, and that it’s not something that adults also deal with. In other words, autistic children are all well and good and all, but they eventually grow up to become autistic adults. Autism is not something that you outgrow as you get older. You don’t just stop being autistic once you reach adulthood. Autistic people may become very adept at hiding it, also known as “masking”, as they get older, but beneath it all, they’re still autistic.
That said, I take great issue with people’s focusing solely on children when discussing autism, because it is a lifelong condition. In my case, I am very high-functioning, and so while growing up in the 1980s and 1990s, my autism went undiagnosed. That meant that I got no autism-specific support as a child and as a teen. That’s not the fault of anything specific to my situation, though, since autism wasn’t as well understood back then, and high-functioning cases like mine weren’t typically diagnosed. I admit that I have mixed feelings on that, as I’ve heard about some of the interventions and other alleged “help” for autistic people at the time. So while it might have been helpful for me to have had some autism-related support, remembering the ham-handed way that the school tried to address my toe walking when I was in kindergarten, I don’t necessarily know if I would trust them to help me out with that.
Recently, I learned that several different transit agencies, including, among others, New York MTA, MTA Maryland, BART, MARTA, NJ Transit, and WMATA, have partnered with an organization called the Autism Transit Project, which is intended to raise awareness about autism and highlight the special bond that some autistic children have with mass transit. This is typically done by replacing the normal audible announcements about safety and rider etiquete that are played over the station public address systems with similar announcements recorded by autistic children, with an extra blurb about autism acceptance at the beginning or the end of each announcement.
I take issue with this for a few different reasons. First of all, I feel like this does not include all autistic people, and inadvertently spreads the misconception that autism is something that only affects children, because that’s all that they’re doing by running the kid-centric announcements, and then trotting out the kids who recorded the announcements at a press event for some public recognition. These kids don’t stop being autistic when they grow up. Take me, for example. I am autistic. I may have only been formally diagnosed a couple of years ago, but it’s not like I wasn’t autistic prior to that. The only thing that changed by my getting the diagnosis was that I now knew what I had. It’s just like any medical diagnosis, really. It’s not like you didn’t have that stomach ulcer before the doctor told you about it. The doctor also didn’t give you the ulcer themself. All they did was spot it and then tell you about it, and so the difference is that now you know that you have a stomach ulcer. As far as autism goes, though, I like to say it like this: I was autistic in the womb. I was autistic when I was born. I was autistic all throughout childhood. I am autistic now at the age of 42. I will be autistic on the day that I die. And after that, the corpse in the ground – you guessed it – will still be autistic. In other words, there has never been a time where I have not been autistic, and there never will be, either. The same applies for other autistic people as well. We start out as autistic children, and then we grow up to be autistic adults. Our various special interests grow up and develop with us as we age. For instance, I have always been interested in transportation. I remember one time going up to Asbury Park in New Jersey to visit my grandparents, and commenting to Dad about all of the bridges that we went under along the way. I have also been very interested in roads, and was excited to see the various parts of the US 71 bypass (now I-49) be completed and opened. I loved it. I also have been interested in ships, as well as bus and rail transportation. To that end, I now work for a mass transit system and help operate the trains. Every day is so much fun, because I get to be amongst one of my interests, and I’m proud to be a part of what makes it all happen. I also am one of the few people at my agency who understands the role that railfans play and what they’re interested in, i.e. no, they are not photographing you, nor are they concerned about you as an individual in the least, but rather, they are photographing the train, and you are just the person who brought the object of their enjoyment to them. In other words, smile and wave for the camera, and put on a good presentation for the railfans.
I also take great issue with the Autism Transit Project itself because of the person behind it, a man named Jonathan Trichter. He comes from Wall Street, having been a big-time investment banker and venture capitalist. Trichter, from everything that I can tell, is not autistic himself. Thus it seems that he is coming at this as an outsider who has something of a savior complex, coming to swoop in and rescue the poor, unfortunate autistic children. He and his family were “personally touched by autism” (whatever that means), which led him to found the Foundry Learning Center, a preschool for autistic children, and the Hubbard Day School, a K-12 school which focuses on autistic children. How the schools handle autistic children is also problematic. According to the websites for both schools, they practice Applied Behavior Analysis, or ABA, which, to put it nicely, is subject to a lot of controversy. Simply put, ABA therapy doesn’t help autistic people with learning how to live as an autistic person and manage the condition, but more about how to mask it in order to try to pass as a non-autistic person. In other words, the whole idea behind the therapy is, “You are broken, and we are going to fix you.” I have never heard an actual autistic person speak about it in a favorable way. Every single autistic person that I have spoken with who was subjected to ABA therapy has described it as abusive and unhelpful, more performative than anything else, and a way to justify placing blame on the autistic person for being autistic. It seems to fall into the same category as the “conversion therapy” that is used on gay people, in that you’re not going to change the person through that sort of “treatment”, but you’re certainly going to mess them up. And as far as autism goes, ABA is definitely not autism acceptance by any stretch of the imagination. That’s more like autism eradication, or at least an attempt to hide it and make it disappear from view as much as possible. Most autistic people, myself included, just want to be accepted for who we are, just like everyone else, and that means accepting our differences as part of the package. It’s like Mr. Rogers said: “I like you exactly as you are.” We didn’t choose to be this way, and I probably would have had a much easier time growing up if I wasn’t autistic, but regardless of anything, we just want acceptance for who we are. In other words, despite noble intentions, Trichter is no saint, and may be doing more harm than good for autistic people.
I consider myself fortunate that we didn’t know that I was autistic when I was growing up, because that meant that I wasn’t subjected to autism-specific therapies in school. I was subjected to some pretty awful interventions over my years in school, which included bullying, gaslighting, more bullying, more gaslighting, and even more bullying, but nothing specifically related to autism, and certainly no ABA therapy. I am grateful to have learned that I was autistic as an adult, because it certainly answered a lot of questions, and it also means that I can explore it on my own time without a bunch of adults who supposedly know what’s best all around me, and I am able to determine how best to manage the condition on my own.
The problem with the way that these various transit agencies have handled autism acceptance is that, first of all, it focuses entirely on children and their affinity for transit. I’m an adult, and I’m autistic, and I love transportation in all of its forms. Why leave autistic adults out in the cold? Second, the execution of the whole thing comes off infantilizing and patronizing towards autistic people. Not only does the use of children in station announcements seem to talk down to autistic people in general (making me think of adults using baby talk at people who shouldn’t be talked down to), but by exclusively using children to represent autism, it just reinforces the idea that autism is just a children’s thing and not something that adults deal with, and makes more people think that it’s okay to infantilize and talk down to autistic people. It’s the savior complex thing again, i.e. look what we’re doing to help these poor, disabled people. And by partnering up with someone like Trichter, who advocates for the use of harmful behavioral therapies on autistic people, it’s just not a good look. The overarching message that I’m getting from the industry about autism acceptance is that (A) this is strictly performative, (B) they’re only doing it because they think that they should do it, and (C) the people who came up with this stuff have no clue about autism or how to celebrate the contributions that autistic people have made in our society. All they’re doing is talking down to us.
All of that said, if I were to make recommendations for autism acceptance, what would I do? I would take a multi-tiered approach, and make sure to make it accessible and welcoming for autistic all ages. The first thing that I would do would be to make a series of public service announcements, or PSAs, to be run in some of the advertising spaces throughout the stations, on the buses, and on the trains. Transit agencies will often run PSAs discussing fare media, rider etiquette, safety, maintenance projects, service changes, and so on, so this sort of PSA would not be out of place amongst them. The autism PSAs could showcase employees who work for the transit agency who are autistic and draw attention to their contributions to the system, showing that autistic people are part of what makes the transit system the masterpiece that it is, that autistic people in the transit industry help to provide the safe ride that you rely on every day, and also reminding the public that autistic people are amongst you and are successful in their lives and careers. My only concern about this is that it might be a tough sell amongst the employees. The success of the PR effort would depend on how many autistic people an agency has in their employment, and how many would be willing to be completely public about their being autistic. I would participate in that, because I’m not ashamed of my autism. It is a part of what makes me who I am. I can’t change it, so I might as well embrace it.
Then the other part of my approach would be to take the public on tours of various facilities that they don’t normally get to see. I remember when I had the new employee orientation at my agency back in 2014, on the third and last day of orientation, they took us on a tour of various maintenance facilities at a rail yard, at a bus division, and in a few other locations. We got to see one of the shops where railcars were maintained. We saw a bus garage and the various things that make it run. We saw a heavy maintenance facility for buses, as well as the bus paint shop. We saw the emergency response training facilities, including a rollover rig and a tunnel mockup complete with two retired railcars in it. We also got to see the training tower for elevator and escalator mechanics. I remember remarking to a colleague, “This is like porn to me.” Seriously, I was enjoying myself, as it hit all of my nerd buttons, seeing some of the various things that make a large transit agency tick. It’s like when I got to visit the rail control center a few years later, I remember my quietly saying, “Wow,” to myself as I took this absolutely amazing room in. Pure wonderment. A similar thing, perhaps more limited in scope, could happen during autism acceptance month, offering guided tours of various parts of a transit agency’s back-end facilities that the public doesn’t normally see. Give them whatever safety equipment that they may need to do it safely, such as a high-visibility vest or safety glasses, and then let’s go. Make it fully inclusive by allowing anyone to go, autistic or not. Don’t make it invite-only, but do require reservations in order to keep tours manageable. It could be marketed as, “In honor of Autism Acceptance Month, we are offering group tours of some of our facilities to the public.” The whole thing could still be geared towards autistic people’s interests, but don’t talk down to anyone. And don’t be afraid to go a little bit over people’s heads and challenge them a little bit. They will either ask questions, which in turn makes for a richer presentation, or those questions will become the starting point for more independent research later on. Either way, at the end of the day, someone has gotten to explore their interests in a deeper way than they might otherwise have been able to do, and learned some new things in the process. And who knows: maybe that will lead to someone’s being interested in a career in mass transit one day.
At the end of the day, I feel that it’s a good thing that the transit industry is recognizing that autistic people often take a particular interest in mass transit systems, but as well-intentioned as it is, the execution of it as it stands right now is a bit off. It needs to be done in a way that includes all autistic people, doesn’t associate with groups who espouse harmful treatments, and doesn’t infantilize or otherwise come off as patronizing towards autistic people. A much better outreach effort could be done, and I would love to see it happen one day.