A couple of big things happened in the last two weeks or so with autism, and I wanted to compile them.
House Passes Autism Act: The US House of Representatives voted to allow $1.8 billion to be allocated to autism (research, programs, training, etc.) with the continuation of the CARES Act through 2024. The bill now goes to the US Senate, but it needs to pass fairly quickly; the current CARES Act expires at the end of September, and its lapse may mean a lapse in funds for services and research across the country.
What happened, Sesame Street?: I am in the process of writing a blog post for this, but ASAN (Autistic Self-Advocacy Network) has severed ties with Sesame Street after the children’s company teamed up with Autism Speaks for its latest round of PSAs.
“New” Ideas About Autism: I file this under “Wait, you didn’t know this?” A research team concludes that (surprise!) autistic individuals have reasons for their behaviors like lack of eye contact and often do desire social interaction to some degree.
“My experience of living with autism”: I always appreciate first-hand accounts from autistic individuals, especially since they almost always shatter at least preconceived notion I have heard from neurotypicals. This writing is from May, but I wanted to share it.
For far longer than it should be needed, a vast majority of us in the autism community have said that genetics may account for a far bigger role in autism than any of the other factors being explored. Now, a study of over 2 million people in several countries is saying similar…to the tune of 80%.
This study not only included 2 million people, but covered a 16 year span. There have been many studies confirming the same findings, but none have been this huge. And while the study is not perfect (what study is?), it is leading researchers to a new field of exploration and questions regarding the role genetics play in autism, along with the role “environmental” factors may still play.
But how does one look for a history of autism in their family, especially if there are no concrete diagnosis to be found (which is often the case, particularly in minority families)?
The key lies in education; being familiar with the symptoms and listening to that instinct that something may not be adding up on the developmental milestones.
The key lies in communication: talking to the professionals (doctors, psychiatrists, etc.) and speaking up about your concerns.
It also lies in understanding: knowing what autism is, is not, and looking at it with empathy instead of sympathy.
The links to the study and an article about the study are below.
There is also a link to my first FREE autism class happening on August 3 in South Florida, which will give you a head start on all of those aforementioned keys.
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. 🙂
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.
Being African-American and working in the autism field, I have certainly noticed that there are very few of my race that I have treated and worked with in my decade in the field. In fact, I can count the number of black clients that I’ve had on one hand. It begs the question of why. This study I read about today starts to shed light on this question.
In the article about the study (both are linked below), “white parents were 2.61 times more likely to report a social concern and 4.12 times more likely to report a concern about restricted and repetitive behaviors” than black parents. They didn’t go too deeply into why, but from experience I can think of a few reasons.
First, there is an idea floating through my community that autism is a “white people” condition. The low diagnosis rate in the black community (which has its own reasons below) is cited as the reason for this belief. This is part of a much larger problem with the community: lack of trust in the medical field, and a belief in long disproven theories about autism. I cannot begin to tell you how many times I’ve had to disprove the autism/vaccine connection theory with my own people.
Second, the black and brown communities are simply not getting educated about autism (probably partly due to the reason above). Because of this, they are often unaware of the more obvious symptoms that were mentioned in the article and the study. In many cases, the symptoms are dismissed as the child misbehaving or just being “not quite right” (I’ve heard this one more than I care to admit). This sets up for a later diagnosis, which leads to delayed treatment, which leads to a more difficult time overall.
I hope to be one who expands the awareness and acceptance of autism into my own community; it could help enhance the lives of a still unknown number of autistic individuals that stand in the midst of the African-American community.