I suppose that because I am in school to become a Behavior Analyst, I should mention something about how today is Autism Awareness Day and how we all should “light it up blue!!!11” to find a cure and to bring awareness to the disorder. Well, I’m not about that, to be completely honest. I find that categorizing Autism Spectrum Disorder simply as a disorder is commonplace, and frankly, very lazy.
Anyone who has delved deeper into the concept of disorders, especially ASD, will realize that a campaign meant to bring “awareness” to a relatively gray-area disorder, although seemingly innocent, very detrimental to those who live/thrive with the diagnosis as they shut out the voices of individuals who experience ASD daily and instead only listen to those so-called “experts” on the disorder. I have had an issue with the “celebration” ever since it became familiar to my ignorant undergraduate self two years ago.
I was a Speech Pathology Major at a school in Chicago, and I had a senior capstone project on a disorder that leads to speech and communication disorders. Naturally, the group I was assigned to work with received the controversial Autism Spectrum Disorder. I remember my initial thought being oh great, we’re going to fail!
Now I can explain why this was so. Partially, her thoughts on the field and popular knowledge of “Autism” were those of frustration and general distaste. She believed that individuals who were autistic were often perceived as broken individuals that needed to be fixed and it simply wasn’t true. She was 10000% against behavioral therapy for these individuals, which includes ABA (Applied Behavior Analysis).
Now, she hated anything about the field of behavioral therapy, and this counted for presentations on Autism as well. So, we had to discuss the prevalence of Autism, the speech/language disorders and general information on ASD as well. Of course, I was given the topic of the approaches many take on managing behaviors. I presented a sample task analysis, breaking down one task into many simpler components, on shoe tying. I thought I did a pretty good job. THOUGHT.
We finished the presentations and it was a week until we received our scores. For this class, although we were assigned to provide a group presentation, we were individually scored on our performance. Which is why I was surprised, but also expectant on receiving the lowest score of all my peers. I looked over her notes that detailed her criticisms. It was a year ago, but I distinctly remember one specific scrawling on my rubric. It read:
Work on your voice.
Without context, the comment is vague and hardly any justification to lower my score. While the context does not provide any justification, it sheds light on how ridiculous I had felt after working all semester for a seemingly lackluster output.
As I previously mentioned, I was diagnosed with a speech disorder called dysarthria after my spell with Meningitis over 5 years ago. I was left with a lack of coordination of the muscles of speech. For example, if I want to say “Cheese Pizza” (pronounced CHEEZE PITZA) 20% of the time I’ll pronounce it “CHEESE PEESA” with an “S” sound rather than a “Z”. Sometimes, I can’t control this and it’s just something I work around and accommodate for my listeners in presentations.
The funny thing is, in the two years I was in the degree program, this professor was told about my condition and wrote that comment, completely disregarding my attempts at accommodating due to the fact she was not willing to look past that difficulty I face.
Okay, Hadeel. We get it, you’re still petty. But what does this experience have to do with Autism “Awareness Month”???
I had/have a speech disorder and the people who claim to advocate for individuals with speech disorders, language impairments and the like should advocate and support me. Now, let’s compare to autistic individuals.
The big-shot group, the BIGGEST so-called advocate for autistic people is known as Autism $peaks. They claim to be the biggest voice for autistic people and write how they continually support the communities of autistic people and how they provide them with services, donate to research and provide autistic people a voice they do not have. In fact, their mission statement reads as follows:
“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.” – Autism Speaks (About Us)
Now, this sounds perfectly acceptable, but what does it mean? As per my own interpretation, I find it to mean that the group is an advocate for autistic people and willing to exhaust all of their resources in order to discover more accurate “solutions” to the treatment of autistic tendencies.
That’s not ok because autistic people are still people, and shouldn’t be stigmatized and spoken about in this “othering” manner. Also, why, why, WHY would you use “condition” to describe Autism when you are an “advocate”?
Basically, I am saying that as an advocate of individuals with disabilities, one should actually listen to the needs of that population instead of isolating them and using them for your own “inspiration porn” needs. They have voices, as do all individuals (doesn’t have to be a verbal voice) and rights.
My job as a BCBA is to represent their needs by actually advocating for my clients, and I don’t care how famous or supposedly well-intended giant “charity” and “research” organizations are, I will work with all my effort to use the voices of my clients to meet their needs, not the needs of other people to lessen their “burden” of existing with an autistic person.
I find it imperative to do more research before blindly supporting organizations that claim to support people with disabilities when in reality the phenomenon is a cash cow for their CEO. Let’s accept these individuals first before we bring awareness to a disorder we are getting a completely biased perspective on.