Autism Parenting Magazine – Disinformation and Silencing of Autistics
I’ve read an article on the online Autism Parenting Magazine that was so bad, my initial reaction was a giant WTF?
Image has a photo of “see no evil, speak no evil, hear no evil” monkey figures in background. Text says, The comment was deleted and I was blocked. I commented on the Facebook page. I was blocked. I answered a question on Twitter. I was blocked on Twitter too. They even blocked me from viewing their website. – Amy Sequenzia, awnnetwork.org”
It was written by someone who clearly doesn’t know anything about autism. The magazine is self-described as “a magazine for parents of autistic children as well as professionals seeking to work with children on the spectrum.”
I don’t know if the non-autistic writer was paid, or if the magazine makes money each time the article is read, but since they decided to have such a bad article in the magazine, they should rename the publication “Bad Parenting Magazine”.
I want to go through some of the most outrageous and absurd statements.
The writer starts by asking: “What is low-functioning autism”?
I was actually curious about her explanation – although I knew there wouldn’t be an actual explanation, since functioning labels are an invention that nobody can reasonably explain. I didn’t have to wait long. She, like anyone who uses functioning labels, doesn’t have an answer, and doesn’t have any knowledge about what autism is.
The first absurd and false statement is that some Autistic children are diagnosed with “low-functioning” autism. That’s false because functioning labels are not part of a diagnosis. As I said, this is an invention to grade us based on partial observation, assumptions, lack of knowledge of what autism really is, and the marketing surrounding everything autism: “therapies” that are abusive and very expensive, organizations that make a lot of money to pay their CEO’s, and the infinite assortment of puzzle pieces, among other dehumanizing things, all used to make us “better”, to “fix” us.
Instead of answering her question, she lists all the “deficits” of Autistics that “fall on the severe end of the spectrum”.
She could have looked that up on Wikipedia. Maybe she did.
She also writes very old, debunked assumptions – like saying that Autistic children “do not form bonds with family members and other children”. This is like saying that we don’t have real feelings, since “real feelings” must be expressed in the way neurotypical people express them because the neurotypical way is the only right way.
Then the biggest WTF statement:
“…low-functioning autism commonly affects a child physically, placing him/her at a higher risk for physical issues including Fragile X syndrome, tuberous sclerosis, and epilepsy”.
So, something that does not exist, that cannot be defined, can cause genetic variations and epilepsy?
Maybe she didn’t structure her statement in a way that would attempt to make sense, but it is still flawed in the correlation.
I am Autistic and epileptic. She would consider me “low-functioning” because I have most of the perceived “deficits” she listed.
I have many Autistic friends who are also epileptic. Many of them would be considered “very high-functioning” by this writer.
My (snarky) questions to her are: how does this “low-functioning” autism go around causing epilepsy? Is it a virus? Is it bacteria? Is it airborne? Do washing hands help? Is it contagious?
After several paragraphs of autism-as-a-pathology statements, like all the other ones that have been written for the last 20 years, the writer decides to show her ableism again:
“Ways to improve your life with a severe autism diagnosis.
Families dealing with a diagnosis of low-functioning autism have several options to help improve their everyday lives. A combination of professional support, in-home modifications, educational opportunities, and community support can be beneficial.”
So, if a child is diagnosed as Autistic, and someone says “it is severe!” the parent should do everything possible to improve their (the parent’s) life. Because of course, autism is about the parents, not about Autistics.
The whole article and the disinformation showed how ignorant the writer is, and how the people who run the magazine are more concerned about “likes” “shares” and “retweets” than they are about real information.
But this is not the worst part.
A friend of mine commented on the article and pointed out the absurd claims. The comment was moderated out. A couple of days later she contacted the magazine about the same subject. Still no answer from them.
I commented on the writer’s Facebook page. The comment was deleted and I was blocked.
I commented on the Autism Parenting Magazine Facebook page. I was blocked.
I answered a question on the Autism Parenting Magazine Twitter account. They were asking “what was the problem with using the term “low-functioning”. I was blocked on Twitter too.
They even blocked from viewing their website (but I can still see it on my iPad).
However, they did change the words in the article. It doesn’t make it any less pathologizing and dismissive of Autistics, but the editing eliminated the absurd and ridiculous claims like that one claiming that “low-functioning” autism causes epilepsy and Fragile X Syndrome (I have screen shots of the articles before and after the editing, and of the comments I made).
And this is the worst part: despite recognizing that the statements were wrong and that they messed up, they chose to pretend that nothing happened, while trying to silence Autistic voices.
About the Author, Amy Sequenzia
Some genetic syndromes like the one listed, FgX, TS, etc. are indeed often associated with epilepsy and some other pathologies, like, for example, autistic traits, in 30-70%. It is not the other way around… In front of such blatant ignorance I often post corrections in the comment section, not that anybody cares not understand. Complete waste of bandwidth.
I co-parent my grandson who is high-support autistic. (I hate “severe” & “low functioning”) Thank you for trying to get the correct information out. I’m saddened to hear that a magazine that advertisers to support carers of autistic children is publishing such garbage. And even worse, silencing autistic voices.
Generalizations are an epidemic, attempting to explain something that defies a well-constructed pattern. I always loved the saying “If you’ve met one person with autism, you’ve met one person with autism”. Perhaps it should be “If you’ve met one autistic person, you’ve met one autistic person”, depending on your perspective. Either way, it is not something that will ever fit neatly into boxes. I understand how this can annoy people with highly analytical minds (and perhaps a touch of OCD?). I am disturbed by the way your opinion was so easily disregarded and banned – I think you may have hit a nerve! And bravo for pursuing this.
Marj brings up a controversial topic. There are two main types of language used to refer disability: person-first language (FPL) and what is known as identity-first language (IFL). I wonder how you feel about this Amy.
I am reposting a blog from Think Inclusive https://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/ which got me wondering. I am a person (and teacher) who fights against stigma – and strives always to be respectful and mindful of diversity and inclusion in a diverse society.
” PFL as a concept originated among people who wanted to fight back against stigma. In a society that perceived disability as dehumanizing, advocates wanted those around them to remember that having a disability does not, in fact, lessen your personhood. As such, the PFL movement encouraged the use of phrases like “person with a disability,” “girl with autism” or “boy who is deaf.” In speaking this way and putting the person first, it was considered a show of respect.
PFL was adopted as a general linguistic rule, moving from use by the people who initiated the movement towards heavy use by those in professional spheres. It essentially became the law of the land. Teachers, doctors, nurses, social service professionals, government officials… everyone was told that they should use only PFL. Using a term such as “disabled person?” A cardinal sin.
However, as with almost any major activism movement, PFL sparked a countermovement, known as identity-first. IFL is a linguistic concept embraced and actually preferred by countless people within the disability community. In the ideology of identity-first, “disabled” is a perfectly acceptable way for a person to identify. Instead of going out of your way to say “person with a disability,” when using IFL you would instead say “disabled person.” This is how I personally choose to identify myself. I am a disabled person.”
I am really interested in hearing from others on this topic.
I find person-first language often reveals what it is about a person that others think might be dehumanising. I’ve never been called a ‘person with femaleness’ or an ‘individual suffering from short-sightedness’ or even a ‘person who is bisexual’, because those traits don’t worry anybody.
Another example of oppression by the very people who claim to be helping those whose lives are touched by autism. This is a very sad story that seems to repeat itself over and over. Bravo to individuals like Amy and others who speak up although it may seem at times that no one is listening. I hope the message gets through before too much more suffering and silencing takes place.
I went to the online journal’s website and it looks very polished and sensible. When I get my free issue I’ll be able to read some articles and respond as a reader.
Another that won’t listen to the actually autistic. Wonder if they’d like a note from autistic mothers of autistic children. :/
I shall remember to ignore anything associated with Autism Parenting Magazine and will be passing tbhis advice and a link to this piece of yours on to readers of my blog in due time. The way they chose to treat you and your friend is a disgrace, as is their overall pathologizing of autism.
I think such magazines and websites are despicable and should be seen as terrorist organisations against disabled people in the least.
“A combination of professional support, in-home modifications, educational opportunities, and community support can be beneficial.”
Couldn’t these be of benefit to the autistic(s) in the family too?
Yes- they can be, and often are, but that doesn’t excuse the rest of the article.
I too think functioning labels are pure bunkum. Terms like “high functioning”, “low functioning”, and the outdated “functions at the level of” (insert arbitrary age that is not the person’s actual age here), do nothing to describe a person. They only perpetuate stereotypes.
Wow. I communicated with them once about Autism Speaks and thought they were good because they denounced any support of that awful organization. I guess they don’t check over their writers, though. Yikes. I’m glad I never gave them any of my money and don’t plan to in the future now that I know this.
Amy, you are one of the brightest and loudest voices out there. Keep being awesome and railing against ableism.
Thank you so much for this–I was diagnosed in my 40’s with autism after a long array of tests, and more recently discovered that I had a chromosomal disorder (chromosomal deletion syndrome) which affects things like learning and sensory experiences. I learned I fit the criteria for autism after many, many years of multiple mental health diagnoses that I actively announced I did not experience. When I learned I had autism I found some relief, was given some hope, because it fit, but the most difficult aspect was dealing with multiple physicians, counselors, and supposed professionals who “evaluated” me, but would not believe me when I told them about my symptoms, or who totally missed what was happening. I could never fully express the confusion, pain, and alienation I went through due to not knowing who I was for all those years as I tried to find my bearings–even as so many people interjected their own assumptions into me. One physician even said, “It’s no big deal. This is God’s design.” And I am supposed to be the one who is disturbed??? At other times, there was a sense I had to prove how smart I was in order for the diagnosis to be believed. I am only now learning to be a human being. The greatest hope for me is the potential for meeting other autistic people, where I can talk openly about the social and learning challenges I experience without shame or fear of being labeled with a mental illness; and where I don’t have to fear the confusing array of labels people are given due to difference. Thanks for this piece. One day, maybe the “experts” will actually talk to some autistic people.
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