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.
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.
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!