Spectrum: A Story of the Mind

I strongly encourage everyone to watch this video, because it is amazing. I agree with Dr. Grandin in this film; we should focus on the sensory input just as much, if not more, than the social skills when it comes to autism treatment. It’s about 23 minutes long, but so worth it. I may make this required viewing for my workshops in the future; I like it that much.

Also, the last adult interviewed in the film is Nick Walker, one of the first autistic adults that I had ever met. I actually had him look over my thesis proposal (which was about autism and multiple intelligence) some years ago. He was also the first person to make it clear to me that most adults like himself refer to themselves as autistic, not “a person on the spectrum.” I was pleasantly surprised to see him in this, and yes, he is very good at Aikido!

If the embedded video does not appear (it was acting funny while I was writing the post), then the direct link is also below.

Spectrum: A Story of the Mind

“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.

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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.

Data Puzzles

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There is a lot of emphasis on data in the autism field, especially since Applied Behavior Analysis has a monopoly on the field right now (unfortunately). Everything is data driven, meaning that numbers must support everything. Success is measured in data. Research is (of course) measured by data. Intervention techniques soar or crash based on data.

So what happens when the data confuses people?

A recent study on autism prevalence in 4 year-olds is doing just that, because some of the data doesn’t make sense. For example, if the number of diagnosed kiddos below age 3 decreased in New Jersey, then why is the prevalence number increasing? One possibility is that the number of professionals trained to diagnose and treat autism is low and not increasing with the demand. Having been in three different metropolitan areas in the last 3 years (Bay Area, LA, and Palm Beach County), I can attest to this suggestion. There aren’t enough of us.

The link to an article about the study is below. New Jersey was one of the states examined because it appears to have the highest prevalence in the country right now, but also has a huge array of resources. They also said that because of this, NJ probably has the most accurate information in the study.

New autism prevalence stats spotlight challenge of early diagnosis

Autism Month

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You probably noticed that I didn’t say “Autism Awareness Month” or “Autism Acceptance Month.”

Over the course of the past few weeks, while others were shouting about this month from the rooftops, I was pretty quiet. There were two reasons: for one, some major changes were happening personally as I shifted my entire focus to this business. Second, I honestly wasn’t sure of what to say.  Listening to numerous families recently helped me find something to say.

For many communities in my country (the United States), both awareness and acceptance are still minimal. You may think that by now everyone knows all about autism, but this is not the case. Hardly. So, I cannot just call it an awareness or acceptance month, because neither has been achieved in the communities that I wish to serve.

I’m not really going to say much more, because I want to recognize the voices of autism itself. I highlighted some of these folks last year, and I want to do that again this year. Below are the blogs and Instagram pages of autistic individuals and families with autistic members that I follow or like to read. Please read their posts, content, and experiences, because they can say far more than I ever could!

Also, if you want to add your voice to the list this month, comment below and I will update this post with your Instagram page, website, or blog through April 30th. If I get enough blogs/profiles, I may create a permanent list on this site!

Instagram:

https://www.instagram.com/astimmypuzzlepiece/

https://www.instagram.com/girlonthespectrum/

https://www.instagram.com/amirbetv

 

Blogs/Sites:

https://davidsnape.me

https://neurodivergentrebel.com

A Resource Desert

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While living in the Bay Area of California, I felt as if there were a lot of resources for families on the autism spectrum. I watched former co-workers open up therapy service organizations for autism, and the universities (such as Stanford and the not-so-local UC Davis) had entire departments and programs dedicated to research and/or community outreach. There seemed to be something going on all the time, from walks and conferences, to trainings and meetings…there was always something to learn and gain.

You can imagine my surprise when I moved back home to South Florida and found nearly nothing compared to where I came from. Granted, there are some organizations that say they do the very things that I am looking to do, but I still hear from my community that there aren’t any services being provided to them. There is a disconnect somewhere.

Because of the wording of the laws in Florida (many of which only specify ABA as an acceptable intervention), many of the agencies that provided such services when I last lived here no longer can due to the guidelines. I am also noticing fewer professionals in my area who are trained or have experience with autism, so that is contributing to the resource desert as well. It is a strange and unfortunate situation all around.

So, what is SPARC hoping to do in the midst of this disconnect and resource shortage? Well, while we may not provide direct therapy, we do want to give families, communities, schools/daycare centers, and potential employers a better understanding of autism and encourage advocacy. That is how the system is improved. Awareness leads to Acceptance, Acceptance leads to Affirmation, and Affirmation leads to Advocacy.

It’s time to create an oasis in the desert.

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Autism and Employment

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WebMD released an article this week about the expectations and experiences of work for  adults on the autism spectrum. While the study has not been peer-reviewed yet, it does appear to offer a solid look at what the office environment feels like for a population who is (unfortunately) still trying to get their foot through the door.

I appreciate the fact that one of the biggest takeaways from this article for me was the fact that autistic adults were not completely sold on the idea of formally training employees about autism. This was mostly because they did not want to be singled out. This was also listed as the reason that they were hesitant about having a different rate of pay. While my trainings have been with non-profit volunteer teams who regularly interact with autistic individuals or families affected by autism, I can understand the hesitation of having an “autism training” at a for-profit company. It’s something for me to think about, for sure.

It is an interesting article overall, and the findings were presented this past Wednesday at the International Society for Autism Research’s annual meeting. The direct article link is below.

https://www.webmd.com/brain/autism/news/20180509/what-helps-adults-with-autism-get-and-keep-a-job#1

Being Aware/Autism Awareness Month

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Don’t worry, I didn’t miss the fact that April is Autism Awareness Month. Now that I’m settled, I wanted to give my own take on the month.

I saw this quote a few days ago, and it stuck with me. I’ve experienced this recently myself, and it does make you laugh when people think that they know you and actually don’t have a clue.

This was one of the first lessons I learned working with special needs children, particularly those on the autism spectrum. I had to learn that a vast majority of my clients knew exactly what they needed; the problem was that us “experts” weren’t listening. We were assuming that we knew what they needed. So naturally, we were met with resistance. For some of these so-called experts, the solution to that resistance is to push back harder, to literally break the spirit of the client so that they conform. Even in the beginning, I had an issue with this.

Instead, I chose to drop into the client’s world. I wanted to see how they saw things. While I can probably never know exactly how the world is to them, this simple state of being made me more aware of their awareness. The repeated actions aren’t mindless, but an attempt to regulate (same as how neurotypicals have quirks like biting our nails when nervous…except here you’re nervous most of the time). In doing this, I also quickly learned to never talk about them (in a negative way, especially) within earshot, because just like anyone else, they can tell if you’re talking about them. They may not be able to verbally tell you, but trust me, it will come out in some way. I’ve had to remind many parents and peers about this.

Finally, having said all of that…they can tell you more about themselves that I ever could. In these final days of April, I urge you to follow an autistic individual’s blog, Instagram, Tumblr, etc. You will see, hear, and feel the struggles and triumphs from those who live it, rather than those who work with them. I’ve included a few I follow that are awesome people (and yes, the number of women listed was kind of on purpose). If you are on the spectrum and have a social media presence (or know someone who does), leave your links in the comments as well. I’m going to try and highlight more of your voices going forward!

Instagram:

https://www.instagram.com/astimmypuzzlepiece/

https://www.instagram.com/girlonthespectrum/

 

Blogs/Sites:

https://davidsnape.me

https://neurodivergentrebel.com