The Miss Florida pageant is about to get its first autistic contestant.
I included a link to the article (which includes a video) below, but much like the concerns that rose from Kodi Lee on “America’s Got Talent,” the reaction of the newscasters was a bit…well, if you watch the video, you will see what I mean.
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.
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.
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. 🙂
Good read about the first openly autistic person to practice law in my home state of Florida. The message of inclusion is so strong here; find a person’s strengths, encourage them, and watch them shine. 🙂
I really love the work that the UC Davis MIND Institute is doing with regards to conditions such as autism and ADHD. This newest bit of news could help identify a certain subset of autism much faster. According to the article, it would probably only identify about 17% of children on the spectrum for now. This could, however, lead to specialized diagnostic tools and interventions that could benefit everyone further down the line.
Here’s a link to the article, and definitely check out the rest of their site. The MIND Institute is always looking for research participants, and has regularly updated information on their findings.
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.
*Pretty accurate depiction of what the view was like for most of my road trip, give or take a few highway lanes.
Sorry for the lack of updates! My main focus has been this move from CA to FL, which finally happened late last week. After dwindling my belongings down to whatever fits inside a Mazda 3, driving a huge chunk of I-10, and trying to adjust to the multiple time zones I had just rode/driven through, I am finally feeling a bit more centered.
I stumbled upon this article on girls with autism that I wanted to share. I find it interesting because it is from Australia, and they have developed a separate set of guidelines for diagnosing girls/women on the autism spectrum. Having had autistic girls as clients in the past, their guidelines look pretty spot on to me.
I do believe that it’ll take a special set of guidelines to diagnose girls and women, and I think this will go double for minority girls and women who already tend to get the short end of the diagnostic stick. In any case, it’s a good, quick read and a piece that I think practitioners here in the States should take note of.