A recent report from the Centers for Disease Control and Prevention (CDC) here in the United States has confirmed what I think a lot of us in the field have suspected for awhile. While the above link is to the report itself, you can click here for another summary of the report by Disability Scoop.
First, the rate of autism has increased from 1 in 59 to 1 in 54. The CDC believes that this is more than likely due to the increase of identifying and diagnosing.
When it comes to racial breakdown, the report states that for the first time, the rate of prevalence is the same for white and black children. This seemingly debunks a long-held mindset within my own community that “blacks don’t get autism.”
Now, the differences pop up when it comes to the age of diagnosis. While black children have made minimal gains here (meaning that they’re starting to get diagnosed more), they are still behind their white counterparts with regards to the age of diagnosis and start of services (meaning they are still getting diagnosed later). Worse still, hispanic children are behind both white and black children with regards to diagnosis.
Another difference is the access to services and early intervention. The report mentions that there continues to be a gap between services obtained by white families and services obtained by minority families. The age at which these services are obtained also appear to be different, with white families getting a diagnosis and early intervention sooner.
One of the goals of SPARC is to minimize these gaps. So, tell us: what would you want to see from SPARC to help bridge these gaps?
April actually has two meanings, depending on where you stand in the autism community.
For most who work in the field, it is Autism Awareness Month: a month of “Light It Up Blue,” fundraising, and quoting a lot from Autism Speaks. It’s about posts of what autism is, the therapies designed to assist in it, and helping families affected by it.
For many autistic individuals, April is Autism Acceptance Month. It highlighted by the color red, shared personal experiences, and quoting a lot from each other. It’s about posts of what autism is really like, programs for autistic adults, and what the future holds for them.
These two shouldn’t be so different, but they are.
With SPARC, I find myself a bit in the middle. I have grown understandably wary of Autism Speaks since speaking to and listening to autistic individuals, and I definitely feel that not enough focus has been made on involving autistics in the autism conversation (at least not here in the United States). At the same time, I don’t think we’ve gotten past the awareness stage yet, either. There are still huge pockets of communities that don’t know everything they could know about autism. Awareness just has to be done correctly, and with respect rather than ignorance.
I think both need to be focused on, without being at odds with one another.
Below is a link to a blog post about Steve Asbell’s Autistic Masking Quiz, which asks questions to help adults determine if they have been “masking” their autistic symptoms, or perhaps to help someone identify if they’re possibly on the spectrum at all. I hope we can eventually get to a point where the “masking” isn’t needed, and doesn’t cause the potential mental harm that comes from denying your true self.
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.
When I’m quiet, it usually means I’m up to something big, and I was!
SPARC and Riviera Beach BRIDGES are teaming up to offer a series of FREE workshops to the community! The workshops will cover a variety of topics, including:
Dealing with behaviors
I am really excited that we were able to offer these for free, because that is always a concern on my end. These workshops will be in rotation at the BRIDGES location for the next several months, so don’t worry if you miss any of them the first time. You can register for the first workshop through the Facebook page, but it is not required. It will help with headcount, though. The first workshop will be an overview of developmental delays, and is on October 16th at 11am.
Please feel free to drop a question in the comments or email me at firstname.lastname@example.org if you have any questions or want to suggest possible topics for future workshops!
Don’t worry, though, it’s for good reasons! There has been a LOT of planning going on!
I’m not going to say too much just yet, as we are still in the finalization stages, but I will say that SPARC is preparing to team up with another great organization in the Riviera Beach community to offer not one, not two, but multiple SPARC trainings to the public, for FREE. I am beyond excited about this, and once we have everything solidified, we will definitely be announcing the details!
We aiming for an mid-October start, so check back here or like our Facebook page for updates!
Lesson of the day to fellow entrepreneurs: Get to know those in your community, and make your presence known as much as possible by attending local events (armed with business cards!), and connecting to those you have common ground with. You literally never know where your next opportunity or partnership may come from!
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.
We are only a few days away from the first West Palm Beach class “Hello Autism” this Saturday!
I checked out the space today to make sure the equipment and setup would work, and yes, it will have a similar setup to this. I want this to be a discussion as much as it is a workshop, and I want it to become a regular occurrence.
If you haven’t reserved a spot yet, it’s FREE and there are still spaces available! Click here to go directly to the event and register!
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.
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
Place: Mandel West Palm Beach Public Library at 411 Clematis Street, West Palm Beach, FL 33401 (Hibiscus Room on the 3rd floor)
RSVP: Email email@example.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.