I read an article today, (May 15, 2019) that says “Is Autism a Medical Condition or Just A Difference? The Question Roils Autism Community”. That’s its title. The article opens by describing a play in London called “All in a Row”. The play, according to the article, “unfolds the night before social services separates a boy named Laurence from his family.” Apparently, Laurence is a nonverbal Autistic “sometimes aggressive” 11year old. Sounds pretty controversial to begin with, but it gets weirder. Laurence is not played by a human child…Laurence is a child-sized puppet. Obviously people are split on this. I’ll give my personal opinion on this in a minute, but the general public’s opinions are split down the middle. They either love this decision or loathe it. A woman named Sarah, who according to the article, is “the mother of four Autistic boys and author of ‘A Parent’s Guide to Coping With Autism’”. According to her, the puppet is a great stand-in for a role that no child could ever pull off. BUT some other people basically did not even give the play a chance. According to the article, an amazing 12,000+ people signed a petition calling for the cancellation of the show. Their argument was “Laurence dehumanizes Autistic children” and “promotes harmful common misconceptions that we lack feelings and empathy”. I assume that “we” in the article applies to Londoners on the Spectrum. Also the play apparently focused on the parents’ experiences over the puppet’s perspective. The weirdest part about this? It caused a new hashtag on Twitter, #puppetgate. Another hashtag people used was #ActuallyAutistic. The play’s writer, Alex Oates, wrote the script based on his years of experience as a care worker for a severely Autistic child. According to the article, Oates “sought input from people on the Spectrum and the parents of the child who had inspired the story”. He thought the puppet would be a “creative medium” as opposed to asking an actor to play the part.
So what is my opinion on this? I actually do not have a problem with the puppet as the main Autistic character. Really, truth be told, I think I’d prefer having a puppet to get mad at than have someone—i.e. a “real” person—acting out a nonverbal Autistic kid. As for “puppetgate”…where was this hate when Julia the Muppet on Sesame Street was debuted? I know some people were disappointed with Julia, but nobody exploded over it. How is this different? OK. I am going to backtrack for a second. Julia is low-verbal and Laurence is nonverbal. So there’s that major difference. Also Julia is four and does not have “sometimes aggressive” tendencies. I support the puppet idea.
But that wasn’t even the main point of the article. The main point of the article was how people perceive Autism. Instead of calling them “camps” as the article does, I am going to call them Group A and Group B. Group “A” is parents of Autistic children with more severe traits (“including intellectual disability, limited language ability and self-harm”). They say that Autism is a medical condition that needs more intense treatment.
Then there’s Group “B”. Group “B” supports neurodiversity. They argue Autism is a difference and disability that society should accept and accommodate, NOT try to prevent or “cure” it. An anonymous person interviewed during the article said, “While I would gladly cure my anxiety, I don’t want to cure my Autism because I believe it’s an important part of who I am and something worth celebrating.”
Me personally? I think I am more likely to lean or fit into Group B. But I do think some
ideals from Group A might have a valid argument. Am I saying people with Autism and disabilities need to be institutionalized? No, but I am saying I think some people need more help or support than others.
There is a line from the article about parents that I am not sure what to think of. The line was, “Some parents say that as Autistic self-advocates have become more vocal, their perspective is drowning out the voices of Autistic people who cannot speak for themselves.” I think we, meaning parents of people on the Spectrum and self-advocates, should at least try and band together and collaborate with each other. Now, some parents with the afore mentioned concern “banded together to form the National Council on Severe Autism.” This council is “the first advocacy organization to focus exclusively on the needs of Autistic people who require high levels of support”.
Now while I support what these parents are trying to do, I think they need an Autistic person’s perspective on how to succeed with this. Otherwise you’re going to fall flat on your ass in the Autism community. We can help each other.
A section that stuck out to me in the 4 page article was “At the time, there were escalating calls for an Autism cure, as the prevalence of Autism in the United States had jumped more than tenfold from the 1980s to the 1990s.” The segment goes on to say “the media portrayed Autism as an epidemic, and scores of parents took up advocacy work for their Autistic children.”
As fate would have it, “those children grew up and didn’t necessarily agree with their parents’ view on Autism”. I like to think I am one of those “lucky Autistics” who agrees with their parents’ ideals and views…at least, my mom’s. My mom is my biggest advocate; I like to think. My mom was advocating for me long before I became a self-advocate, and even before I understood my diagnosis. But then I came to terms with my diagnosis and felt I needed to help her out. Hence I am where I am today. Actually, my whole family advocate for me, but I think it all started with my mom. So thanks to my mom for that.
Now do I agree whole-heartedly and 100% with every little thing my mom says? No, but I can appreciate what she is doing or at least trying to do. In the article, a woman named Julia Bascom said via an email “Family members can be important allies, but it’s about advocating with as opposed to advocating for”. For me, I think it’s a combination of both with me and my family. I love the fact I have had that much of an impact on not only my mom, but my sisters and my extended family, as well. Funny story. Those of you who know me know that I have an Autism puzzle piece tattoo. I got that tattoo touched up after everyone said it looked like a shoddy tattoo. So my Uncle took me to Pennsylvania to get it redone. So we got to talking about Autism and my Uncle says, “You know, before I realized you had Autism, I thought you were just someone who was semi-annoying and too talkative.” That made for an awkward car ride, but my Uncle is very old-fashioned and set in his ways and beliefs. So if I can sway him, I think I can do it with others.
So the article mentions five words the NCSA (previously mentioned National Council on Severe Autism) uses that are controversial among people on the Spectrum. Their main point is “is Autism a difference, diagnosis, disorder, disease, or disability?” Obviously people from Group B, myself included, are leaning toward the first word: Difference. Now I know that the technical medical term is Autism Spectrum Disorder but I do not know if I agree with this. I also know Autism is an official medical diagnosis, but I really do feel it is just a different lifestyle.
It sounds controversial when I say “lifestyle” but I do think Autism is something you can’t help. I hate to be “that guy” but I want to validate my point. Is being black something you can help? No. Is being male or female something you can help? Well, unless you get a sex change, no. In my case, can you help being Autistic? No. So it’s all kind of clumped together in one category, in my opinion. Again, this is just my opinion. Please do not hunt me down and murder me or leave me hate mail.
Now I take pride in my “differences” as opposed to regular or “normal” people. I feel so honored to have my diagnosis. I love the person I am and what people on the Spectrum can amount to. I think every person on the Spectrum has story to tell, verbal or not. Even nonverbal people on the Spectrum, I assume, have really different, various and interesting life stories. Do NOT underestimate the nonverbal or low-verbal individuals. Just because they cannot talk or adequately communicate does not mean they cannot write or type or use another means of communication.
I want to hear from you. I am attaching a link to the article I referenced in this post. I suggest you read it so you can be your own judge and not assume one way or another based on my thoughts alone. Thanks for reading!