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?

Autism Month

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You probably noticed that I didn’t say “Autism Awareness Month” or “Autism Acceptance Month.”

Over the course of the past few weeks, while others were shouting about this month from the rooftops, I was pretty quiet. There were two reasons: for one, some major changes were happening personally as I shifted my entire focus to this business. Second, I honestly wasn’t sure of what to say.  Listening to numerous families recently helped me find something to say.

For many communities in my country (the United States), both awareness and acceptance are still minimal. You may think that by now everyone knows all about autism, but this is not the case. Hardly. So, I cannot just call it an awareness or acceptance month, because neither has been achieved in the communities that I wish to serve.

I’m not really going to say much more, because I want to recognize the voices of autism itself. I highlighted some of these folks last year, and I want to do that again this year. Below are the blogs and Instagram pages of autistic individuals and families with autistic members that I follow or like to read. Please read their posts, content, and experiences, because they can say far more than I ever could!

Also, if you want to add your voice to the list this month, comment below and I will update this post with your Instagram page, website, or blog through April 30th. If I get enough blogs/profiles, I may create a permanent list on this site!

Instagram:

https://www.instagram.com/astimmypuzzlepiece/

https://www.instagram.com/girlonthespectrum/

https://www.instagram.com/amirbetv

 

Blogs/Sites:

https://davidsnape.me

https://neurodivergentrebel.com

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. 🙂

 

A Resource Desert

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While living in the Bay Area of California, I felt as if there were a lot of resources for families on the autism spectrum. I watched former co-workers open up therapy service organizations for autism, and the universities (such as Stanford and the not-so-local UC Davis) had entire departments and programs dedicated to research and/or community outreach. There seemed to be something going on all the time, from walks and conferences, to trainings and meetings…there was always something to learn and gain.

You can imagine my surprise when I moved back home to South Florida and found nearly nothing compared to where I came from. Granted, there are some organizations that say they do the very things that I am looking to do, but I still hear from my community that there aren’t any services being provided to them. There is a disconnect somewhere.

Because of the wording of the laws in Florida (many of which only specify ABA as an acceptable intervention), many of the agencies that provided such services when I last lived here no longer can due to the guidelines. I am also noticing fewer professionals in my area who are trained or have experience with autism, so that is contributing to the resource desert as well. It is a strange and unfortunate situation all around.

So, what is SPARC hoping to do in the midst of this disconnect and resource shortage? Well, while we may not provide direct therapy, we do want to give families, communities, schools/daycare centers, and potential employers a better understanding of autism and encourage advocacy. That is how the system is improved. Awareness leads to Acceptance, Acceptance leads to Affirmation, and Affirmation leads to Advocacy.

It’s time to create an oasis in the desert.

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School Daze

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Parents with kids and teens on the spectrum are starting to notice the range of different experiences they are having with regards to education, at least in my home county. While this is a goal further down the line for SPARC, I am fascinated by how a school district can have such extremes in providing services for those with special needs.  The private and charter school sector has similar range of differences, leading to parents trying school after school in hopes that they actually provide the services that they say that they do (because I’m learning that this isn’t always the case, either).

Right now, I am looking at what is available in my county. I hope to start reaching out in the spring and summer to these programs already in place and help them connect better to minority communities. There are some great resources out there that many do not know about. I hope to change that and help bridge some obvious gaps. This is honestly Stage Two in SPARC Guidance’s plans, but with Stage One in its testing phase already (on an individual basis), I want to start laying groundwork for the next steps.

There will probably be some future posts on this topic as I learn more about what is available for families in the school district and the community.

Just because you cannot see the movement, does not mean that movement is not happening!

Stay tuned!