“Hello, I’m sitting here…”

I had a very surreal experience months ago that made me realize that any of us who do not fit the mold of “typical American” can expect to be ignored at some point, even when we are physically right there. This is also the reality of many on the autism spectrum.

I won’t go into massive detail about the situation, because it involved people that I care about that I think simply did not realize how tone deaf the conversation was sounding to me. I also didn’t bother to correct them because it would have quickly dampened a light and fluffy mood.

In hindsight, I should have said more.

The topic started on Black Panther, and then took a turn to different aspects of African-American culture (specifically with regards to us black women) that may have inspired other subcultures. I then watched and listened as two definitely not black people debated on who knew more about black culture in order to prove their side of the argument. I heard everything from “I lived in so-and-so, so I know more about it” to “I have a lot more black friends, so I know more about it.” Meanwhile, I sat and sipped my drink in silence, looking at both of them with what I can only describe as disappointed amusement.

four women chatting while sitting on bench
Photo by ELEVATE on Pexels.com

Finally, a third person hinted that maybe they should ask the one black person at the table. By then, I didn’t care to prove a point at all. The bartender came up, and that thankfully more or less ended the discussion.

So here’s the tricky part about this whole experience. I don’t want to necessarily be seen as the spokesperson for an entire race, but by being the only member of that race in the group, it was almost unavoidable. Therefore, I was taken aback when two of them started a “who knows black folks better” match in front of me. No matter what the initial subject, it would still come across as ridiculous in my eyes. I stayed silent because there was no way that I was going to purposefully support either point.

This later made me think about my spectrum clients, who were mostly kids. I have seen many people talk over them and discuss them (usually in a negative tone) without so much as a sideways glance their way. Interestingly enough, I have also heard many parents and teachers tell me that they know that the client understands what they are hearing, they are just not responding (at least, not verbally). It’s one of the reasons why I try very hard not to discuss them when they are sitting right there, at least not in a negative sense. If they are there, I praise their efforts or perhaps playfully acknowledge their moments of impish behavior (that often gets a knowing smirk from them). I also try to include them as much as possible in the conversation, because that is just basic manners, I think.

No, being black in America and being autistic in America are not the same thing. There is a lesson in my strange experience at the bar that can apply to practitioners in the autism field, though: if you’re talking about the person’s experience in their presence, you should at least acknowledge or include the person in the conversation.

Hillary Clinton Talks Autism

I try to avoid posting anything political on this site, because that’s not what it is for. I do, however, discuss autism on here. At the bottom is a link to U.S Presidential nominee Hillary Clinton’s plan to address autism in the United States. A couple of things impressed me:

First, she is addressing the entire age spectrum; kids, teens, and adult populations. We often focus on early intervention, and that is important, but what services are there once these individuals turn 18? 25? 45?

Second, she is addressing the minority populations. I speak from experience when I say that the “brown” communities (Black and Hispanic, mainly) are highly under diagnosed when it comes to autism. Some of this is because of a lack of resources, some from a lack of awareness in the communities (I have heard some people say that “black people don’t get autism”), and some from a predisposition in the medical and educational fields to assume low intelligence rather than an exceptional mind.

Third, Clinton is calling for more funding in all areas of autism. Thus far, a vast majority of funding is aiming at research to identify the cause and “cure” for autism. Very little in comparison is focused on the programs and services that autistic individuals and their families need now.

At least for the United States, I think this is a good starting point. She’s addressing some of the very areas I’ve raised concerns about.  So…what do you guys think?

Hillary Clinton’s Autism Plan

PS: I want to keep the comments on the subject of autism and the autism plan itself, not Clinton. Is it a good starting point? Could it go further? How? Did it miss anything? What would you add/edit?

 

Night Owl Ramblings

I just put the finishing touches on the first of many different classes that I believe to be my life’s work. While helping people uncover their purpose is the biggie, I also have a strong desire to educate others about autism. The training I finished up tonight is the latter.

I drew this from the many experiences I have observed, participated in, and read about from those on the spectrum. I don’t like just getting up and spewing facts and diagnostic criteria. I really want people to understand what the autism experience is like, and in understanding, learn to approach with acceptance rather than judgement or fear.

Despite the years of Autism Awareness Month, I am quickly learning that many people still have no real idea of what autism is. In fact, their understanding is limited to Rain Man and “out of control” kids, and that’s about it. Kids have started using the word “autistic” as an online insult, much in the way that “retarded” was used in the past. For all of the walks and fundraising that is done every April, why is it that such a large percent of the population do not have a more accepting view of it?

I kind of answered my own question there: awareness and acceptance are two different ideas. I have definitely seen evidence that a lot of people are aware that autism exists; I think that goal has been fairly well achieved. It’s time to switch gears to acceptance. Unfortunately, the very agencies that started the awareness campaign do not seem too keen on promoting acceptance of autism. They’d prefer if it was “cured.”

I find myself in a unique position to change the narrative, a few people at a time. I have the opportunity to help shape a different way of looking at not just autism, but the power of human spirit and potential overall.

The awesome thing is, so do you.

Conversations on Facebook have opened and challenged some of my friends to think beyond their ideas of what “special needs” really means. I have other friends who do this everyday as well. We can make a difference. We can teach others. Speak your stories. Share your knowledge. This goes triple if you are on the spectrum yourself, because YOU are the expert on it. Not me, not a BCBA. YOU. Everything I learned, I learned from my clients. They have taught me and made me a better person.

I went off on a bit of a tangent, which is typical for me after midnight, so I’ll end by saying that I am super excited about tomorrow (a little nervous as well), and that hopefully all will go well.

Un-training Myself

*NOTE: I could see this post upsetting some people, so fair warning…this is me and my processing in action. This is me attempting to understand a perspective outside of myself, and in the process of trying to understand, you are almost bound to offend someone along the way. I’d just appreciate refraining from any inflammatory responses, that’s all. Anyway, onward we go…

The past few weeks of indirect research has been an eye-opener, to say the least. I wasn’t specifically looking for anything for my literature review, but I wanted to hear more from the adult autistic viewpoint, something I had just started really looking at late last year because my life work has always revolved around kids and teenagers. What I am discovering is making me realize that a decent amount of how I was trained when it comes to autism is not only wrong, it is deplorable.

The first lesson that made me start to question a sizable chunk of (especially) more recent training was the entire “first person language” mindset that so many autism workers and therapists have. I mean, it’s everywhere. People correct you on the daily about it. So imagine my surprise when I emailed an autistic professor at my school for some feedback on my thesis idea, and he politely informed me that most autistic adults find the first person language insulting. The record in my head came to a screeching halt. Wait, so…my trainers with the boatload of autism experience and degrees/certifications weren’t right?

Now I suddenly found myself in not just uncharted territory, but to me, scary territory. The last thing I ever want to do is demean people, and the fact that I had been doing it unwittingly for some years now horrified me. As I started to read more and more from the growing presence of the autistic adult community online, I began to realize that a LOT of my trainers in the field got quite a bit wrong. My challenge now was to re-train my brain on my own. I realized one day that to do this, I simply had to make one observation.

I am a black female, and with that label comes pluses and minuses. Sadly, in the United States, it includes a lot more minuses than pluses. So I thought about it from my own viewpoint, and the re-training began. I would balk at someone if they constantly referred to me as “a person with blackness” or “a woman with melanin.” No, I’m a black woman, end of story. I don’t see my skin color as an asset or a liability per se, it is simply who I am. I also have heard people say to me something to this effect: “It’s amazing how intelligent and well-spoken you are despite being black.” Maybe not those exact words, but you get the point. Again…what? So in other words, those people came in with a very clear and very low expectation of me and were just sooo amazed that I surpassed it. The expectation shouldn’t really be there to begin with, especially with regards to my race.

I could go on and on about that, but the bottom line is that this little exercise helped me to get it. In both cases (being black or being autistic), we are born with it (or at least the scientific evidence with autism is pointing in that direction, environmental factors or not). It is not to be ridiculed or worshiped, it is who we are. This is not to say that the experiences of both are the same, because they certainly aren’t. I needed a way to redefine in my mind what it meant to be autistic after hearing…well, crap…for so long. This was the best way for me to do it, by looking at “whole person” rather than “first person” in reference to my own experience. In doing that, I’ve realized that there is a lot of work to be done, both within myself and in the therapeutic community. I’m ready to roll my sleeves up and do that.