Quick Autism News Roundup

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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.

Autism and Genetics

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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.

Article on Study: Majority of autism risk resides in genes, multinational study suggests

A summary of the study itself in the Journal of the American Academy of Child & Adolescent Psychiatry (the full study has to be ordered through the Journal): Recurrence Risk of Autism in Siblings and Cousins: A Multinational, Population-Based Study

SPARC Guidance FREE “Hello, Autism” Class!

1st “Hello Autism” Class Info!

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We are excited and thrilled to announce that our first community class, “Hello, Autism” is set and ready! Here are the details:

Class: Hello Autism, the first class in SPARC’s community training series

Date: Saturday, August 3, 2019

Time: 2:30-4:30pm

Place: Mandel West Palm Beach Public Library at 411 Clematis Street, West Palm Beach, FL 33401 (Hibiscus Room on the 3rd floor)

Cost: FREE!

RSVP: Email sparcguidance@gmail.com with your name, number of attendees, and zip code. You will also be added to a mailing list to get updates on this and other classes from SPARC, including parking/transportation information.

PLEASE NOTE: RSVP is required for this class, as there is VERY LIMITED seating for it. We can only take a maximum of 20 people for the class. Preference will be given to those in the 33407, 33404, and 33401 zip codes. Don’t worry, though; if enough people email us, we will definitely arrange another class in the near future. Those who attend this class will receive a discount for the second class in the series, which focuses on the school system and autism. Please visit the Classes page for more information about the various class series.

 

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

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. 🙂