Autism Increase, Racial Disparities

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?

Awareness v. Acceptance

 

white blue and purple stars illustration
Photo by Bich Tran on Pexels.com

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.

So…maybe we should Light It Up Purple…

Autism Month

black calendar close up composition
Photo by Pixabay on Pexels.com

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

Being Aware/Autism Awareness Month

once-you-become-very-aware-of-yourself-its-almost-a-12141622

Don’t worry, I didn’t miss the fact that April is Autism Awareness Month. Now that I’m settled, I wanted to give my own take on the month.

I saw this quote a few days ago, and it stuck with me. I’ve experienced this recently myself, and it does make you laugh when people think that they know you and actually don’t have a clue.

This was one of the first lessons I learned working with special needs children, particularly those on the autism spectrum. I had to learn that a vast majority of my clients knew exactly what they needed; the problem was that us “experts” weren’t listening. We were assuming that we knew what they needed. So naturally, we were met with resistance. For some of these so-called experts, the solution to that resistance is to push back harder, to literally break the spirit of the client so that they conform. Even in the beginning, I had an issue with this.

Instead, I chose to drop into the client’s world. I wanted to see how they saw things. While I can probably never know exactly how the world is to them, this simple state of being made me more aware of their awareness. The repeated actions aren’t mindless, but an attempt to regulate (same as how neurotypicals have quirks like biting our nails when nervous…except here you’re nervous most of the time). In doing this, I also quickly learned to never talk about them (in a negative way, especially) within earshot, because just like anyone else, they can tell if you’re talking about them. They may not be able to verbally tell you, but trust me, it will come out in some way. I’ve had to remind many parents and peers about this.

Finally, having said all of that…they can tell you more about themselves that I ever could. In these final days of April, I urge you to follow an autistic individual’s blog, Instagram, Tumblr, etc. You will see, hear, and feel the struggles and triumphs from those who live it, rather than those who work with them. I’ve included a few I follow that are awesome people (and yes, the number of women listed was kind of on purpose). If you are on the spectrum and have a social media presence (or know someone who does), leave your links in the comments as well. I’m going to try and highlight more of your voices going forward!

Instagram:

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

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

 

Blogs/Sites:

https://davidsnape.me

https://neurodivergentrebel.com