“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.

Seeing Trends

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Most of my 10+ years of work have been in the autism and special needs communities as a therapist or developmental specialist. While the clients themselves (kids or teens) are the main focus, I have also been taking mental notes on trends I see amongst the parents and families. The notes have been interesting and at times, concerning.

First, there are a few common ones I have seen across all of the families, regardless of race, location, or socioeconomic status:

  • If it’s a two parent household, the mother often feels like she is carrying the weight of the autism journey. Granted, this seems to be the feeling in a lot of two parent households in the non-autism community as well, but I hear it more often overall with this population.
  • The parents feel as if they have to fight for every service, meeting, and opportunity that they can get.
  • A lot of parents/guardians feel lonely.
  • If the entire family becomes invested in helping their autistic family member succeed, the client usually does (and often goes beyond what any of us professionals may have thought they could do). These cases taught me early on to never underestimate my clients.

Since my change of scenery from California to Florida, I have now started noticing trends that I knew little to nothing about before, but always suspected. In Cali, my population was mostly white with some Mexican families included here and there. Here, the clientele is mostly African-American with some Latino families included here and there (mind you, my therapeutic population is not autism-based here, but mental health based instead). Some of the things I’ve noticed:

  • The children in the black community in general are getting diagnosed much later than their white counterparts. We’re talking *years* later. Early intervention has been proven time and time again to be critical to helping autistic individuals with navigating this really insane, overstimulating world of ours. The later the diagnosis, the more intense and prolonged treatment may have to be.
  • Professionals aren’t listening to the minority parents/guardians. Many parents have told me that they “had a feeling” that something was different about their child, only to have their primary care doctors brush it off and say, “They’ll grow out of it.” This has directly led to the first bullet point above this one: delayed diagnosis.
  • Minority parents/guardians often feel alienated in their own communities. They don’t feel that they have anyone they can talk to, and that few others know their experience enough to even provide support. This diagnosis is still considered foreign in many of these communities.
  • Incorrect myths and assumptions about autism are still quite common. This also leads to delayed diagnosis.

Below are some links to different articles and studies about this disparity in the autism community as a whole. Our services here at SPARC Guidance aim to improve the situations in the minority communities in particular.

Race, class contribute to disparities in autism diagnosis: This site overall is a great one for autism-related news. There are links at the bottom of the article to the studies that were used in the article (these also inspired my post).

Under-Representation of African Americans in Autism Genetic Research: Yes, this is from a few years ago, but I’m pretty sure very little has changed. If populations are not included in the research, then programs for those populations will not even be considered or thought of.

African-American and Latino Children Often Diagnosed With Autism (ASD) Later Than Their White Peers: There is one quote in particular from this article that I wish to highlight, because it speaks to another trend I have noticed since working here in Florida: “In 2007, a study by a team at the Center for Autism and Developmental Disabilities Research and Epidemiology, University of Pennsylvania, found that African-American children were 5.1 times more likely to be misdiagnosed with conduct disorders before being diagnosed with ASD.” (Rentz, 2018).  Also, kudos to NPR for recognizing and correcting their article regarding how they classified autism (see their correction box at the bottom of the article).

If you wanted to know why I’m leaving the therapy field to focus more on autism education and empowerment in my community, now you know. 🙂

 

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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School Daze

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Parents with kids and teens on the spectrum are starting to notice the range of different experiences they are having with regards to education, at least in my home county. While this is a goal further down the line for SPARC, I am fascinated by how a school district can have such extremes in providing services for those with special needs.  The private and charter school sector has similar range of differences, leading to parents trying school after school in hopes that they actually provide the services that they say that they do (because I’m learning that this isn’t always the case, either).

Right now, I am looking at what is available in my county. I hope to start reaching out in the spring and summer to these programs already in place and help them connect better to minority communities. There are some great resources out there that many do not know about. I hope to change that and help bridge some obvious gaps. This is honestly Stage Two in SPARC Guidance’s plans, but with Stage One in its testing phase already (on an individual basis), I want to start laying groundwork for the next steps.

There will probably be some future posts on this topic as I learn more about what is available for families in the school district and the community.

Just because you cannot see the movement, does not mean that movement is not happening!

Stay tuned!

 

Work Accommodations

I really like this graphic that a friend of mine posted about accommodations for adults on the autism spectrum in the workplace. I also realize that not all of these can be logically met by every company, but having worked myself in conditions ranging from “interesting” to “Spirit, help me,” I think a lot of these could benefit a wide range of employees.

I, for one, am NOT a fan of florescent lights…ugh.

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This graphic is brought to you by the Autism Women’s Network.

Also, check out my Autism page, which just got its August update!

UC Davis MIND autism study

UC Davis’ MIND Institute is launching a study about anxiety and autism for children ages 8-12 years old. They are looking to see what types of treatments are best for these individuals. The focus seems to be on CBT (Cognitive-Behavioral Therapy) versus medications. Participants get free treatment and apparently $100 for each assessment performed. This is mainly for those in the northern California area.

Here is the link to the video discussing the launch of the study:

 

Here is a link to more info about the study on the MIND Institute’s site: http://www.ucdmc.ucdavis.edu/mindinstitute/centers/ace/ace-staar.html

You can also check the “Research” tab on the study’s page to see all of the studies they are currently running. I have heard several people from the MIND Institute speak at various events, and I love the work that they do.