The Puzzle Piece & SPARC

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I wanted to post this before releasing the next workshop flyer, because this symbol has gotten a very mixed reaction from the autism community…and rightfully so.

The puzzle piece has become a standard symbol for autism worldwide, from representing entire organizations to being featured on necklaces and bumper stickers. For both sides of the coin, it symbolizes autism being a bit of a mystery, a puzzle to be solved and completed. For some, it represents hope that answers may be found. For others, it is dismissive of their lives and experiences.

For SPARC and its mission, it represents something entirely different.

The purpose of SPARC is to educate, and though we don’t adopt the puzzle piece as our symbol (nor will we ever do so), we embrace a different meaning for it.

For SPARC, the puzzle represents connecting the pieces for minority communities.

It means connecting “stranded” families to resources and assistance.

It means establishing support systems for those on the spectrum and their caregivers in these communities.

It means linking a community together in awareness, acceptance, affirmation, and advocacy.

So, when you see the puzzle piece on any flyers or marketing for SPARC, know that it carries a completely different meaning for us. It doesn’t represent autism itself, but rather represents underserved communities being given much needed tools to assist with autism.

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!

I love Sesame Street

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I remember watching this show a lot as a child. Just to further date myself, I remember the Big Bird movie “Follow That Bird,” and I can faintly recall visiting Sesame Place in Texas before it closed.

So of course, seeing one of my favorite childhood shows stepping up for families and communities warms my heart. They have so many great resources and tools online for families of all types, including those touched by autism. Topics include autism (of course), community violence, financial education, and more! This website is a treasure chest of information, activities, and even professional development webinars. If you haven’t visited it yet, the link is below. The more resources, the better!

Sesame Street in Communities

Miss Florida + Autism

 

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.

Tampa Bay woman will be first contestant with autism to compete in Miss Florida

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?