Autism ignorance prevails, even in an article heavily referencing the “autism community” by Huffington Post’s John Celock. Celock is state politics reporter and Patch liaison for The Huffington Post, according to his bio at the website. The article, outlining one of Missouri’s favorite contenders for Secretary of State in this August’s primaries, discusses how the candidate may be significantly helped by “the state’s autism community.”
Background: The candidate, Senator Scott Rupp, well known to the autism and disabilities community, made headlines throughout the state over the last several years. Senator Rupp was a leading force to create legislation and provisions to end some of the clear insurance discrimination affecting the state’s autistic citizens and families. Meeting with families and advocates throughout the state, both Senators Rupp and Schmitt worked to ensure those with an autism diagnosis could access appropriate therapies. Those of us who were there, who performed research, who spoke to the opposition about the need for change, realized how ridiculous and unacceptable the discrimination really was (and still is in some states). We were thankful for any and all allies, specifically those with power to make positive changes. To provide an example of how gross and shameless the discrimination was; when several of us called various insurance companies, we were actually told that occupational, speech, language, and physical therapies would be approved if there was no autism diagnosis. The therapies would be covered in cases of an otherwise “normal” person having had an accident, stroke, or other problem, causing them to need the therapy. But if the patient had a disclosed diagnosis of autism, and if the person needed the therapies for communication, sensory challenges or was otherwise due to needs related to autism, the person would not be covered. Some insurance companies just flatly denied coverage at all for the autistic family members, or outlandish quotes were given. It took some fierce advocacy, legislators with heart, and some common sense, to do something about it.
As for the article itself, it is absolutely correct about the strong support Senator Rupp has in Missouri, particularly from the autism community. The article is not wrong about the efforts put forth by Senators Rupp and Schmitt, who were leaders in the effort. What I have a problem with is the angle the article takes through Mr. Celock’s prose and use of certain quotes. There is a soft bigotry that many people do not notice, or even realize they are committing, when discussing autism, autistic people, or other areas concerning special needs. The most offensive statement is a quote reportedly made by ( former) Senator Smith who was complimentary towards the efforts, but erroneously referenced the autism community this way: “This group of people who have children suffering with this have not been political. These legislators understood their plight and achieved something. It is the kind of thing that can give him an edge.”
Rupp, Schmitt, and the autism community, did accomplish something meaningful in the state of Missouri, and seeing how such a diverse community of citizens came together to take care of an injustice, was refreshing to say the least. Families were paying for insurance coverage, and then the one(s) with an autism diagnosis was being denied. Senators Rupp and Schmitt were tirelessly traveling the state, talking to people in the autism community,organizing rallies rain or shine, developing platforms to ensure parent and advocate input at every turn. It was hard work for everyone involved. But it was work from the heart. It was work that ensured we were able to right such an obvious wrong. Everyone who was involved should be proud of their efforts.
My main problem is not about Smith’s complimentary tone about the leadership and efforts, but lies in his reference to “suffering children with autism.” The fact is many otherwise well-meaning people repeatedly couple the words “autism” and “children” as if they are synonymous.
Not all autistic people are children. This may sound like a grossly obvious statement, but you wouldn’t know it unless you are an autistic person, advocate, or parent absorbing the consistent stream of misinformation and offenses from the media every day. The statement also conveys that autistic people are not only all “children”, but that they “suffer” from autism.
To be fair, unless one has become an expert, or an educated advocate, it is all too easy to be led to believe, or infer, that autistic people are all suffering, and/or that autism is a childhood disease. The fact is that autism is a lifelong pervasive developmental disability, a neurological difference. Autism is not tragic. It is not an appendage, sickness, injury, or disease. The very reason this article was important was to showcase the meaningful work some Senators have accomplished in the state of Missouri, and why the autism community are largely such loyal supporters. The importance being the end of some obvious autism discrimination. Now, we must wade through some other forms of discrimination, ironically, in the same article.
Writers who have had any formal education are told to “consider the audience.” I hope this can be a lesson to the Huffington Post, and others, to consider your audience when referencing any group of people. Consider a report referencing African Americans as “people who suffer with black skin” or homosexuals as “people who suffer from homosexuality.” Autistic people are a part of the audience. Writers are told that accuracy is important. The fact that autistic people are capable of reading, forming opinions, expressing feelings, thoughts, and developing perspectives, should be a consideration when discussing the community. Maybe Mr. Celock and former Senator Smith can also note that not all the voters from the autism community who come out on August 7th will be “parents of children” with an autism diagnosis, there will be autistic adults voting too. Advocates like me want to see respect and inclusion for the autistic perspective in any media commentary. Please remember that referencing the “autism community” is null and void unless you are going to include autistic perspective.
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