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

What is “successful” treatment?

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The link below is to a very interesting article examining what success looks like for different individuals when it comes to autism treatments. Both members of the field and autistic adults were asked to answer, giving a pretty wide range of responses.

What defines ‘success’ for autism treatments?

It made me start to think of what success looks like to me in this regard. For one, it involves a strong support system. This is something that everyone seems to agree on. The family and the community in general has to be open to learning, helping, and expanding opportunities. This is a piece that many autistic adults have said (quite loudly) is severely lacking overall.

I think another marker for me, especially with younger kids, is if they start to engage with others. It doesn’t have to be much, but I always loved the moments when a client figured out that a form of communication (be it a sign, picture, written/typed word, or vocalization) is the gateway to getting what they need. Even a brief moment of eye contact (because I have never been in favor of forcing a staring contest) can speak volumes if the family members and friends are willing to learn the autistic individuals’ language.

What do you think of the viewpoints from this article? Who do you most agree with? Do you agree with any of them?

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. 🙂

 

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.

Parents, We Need You.

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First, yes, it’s been awhile. A lot has been going on over here, including some big decisions that will probably be announced in the June site update.

A recent situation has caused me to take a hard look at the idea of “parent buy-in.” It’s a bit of a buzzword/concept in my field, and it centers around the goal of getting the family invested in our therapy work. Too often, I see parents who simply hand their child/children off to the therapist/interventionist/specialist and basically say, “Here, fix them.”

The truth, parents and guardians, is that we cannot “fix” your child. First of all, many of us don’t really like the idea of “fixing” anyone. It implies that the individual is broken, inferior, or not up to some invisible set of societal standards. Second, we are in your home/community or you are in our office a few hours a week.

In order for your son or daughter to become the best that they can be, they need YOU.

In order for us to be able to find those sparks in your son or daughter, we need YOU.

I always try to tell families at the very beginning that this is a team effort, and everyone must be invested in it. The clients I worked with who blossomed the most were the ones who had the support and follow-through from their parents/guardians, their siblings, and even extended family. The families who were sponges, hungry for information, skills, and concrete examples…these were the cases that led to more fulfilled lives. No, the child didn’t get “fixed.” The child got love and acceptance, and that made them work at becoming more confident, loving, and ready. All children want to receive acceptance and praise from their parents/loved ones, I truly believe that.

When the families meet us at the table, ready to make the world of their family unit a better place, amazing things happen. I’ve seen it over and over again.

I have a saying when meeting families: “My end goal is to essentially be fired because you don’t need me anymore.” I don’t want your family to become dependent on me or my team. I want you to apply learned skills and build relationship bonds so that you don’t need my “expertise” anymore.

Us professionals want to see the child AND the family unit flourish and thrive independent of any services or interventions.

This needs to be everyone’s goal.

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