It’s been a long time since I’ve posted anything. I’ve just finished the first year of my PhD studies and was feeling burned out. Today however, David Perry wrote about a “news” story in which the reporter profiled the mother of a young autistic child.
It is just another drop in the ocean of horrible parent narratives about disability which frame disability as the scourge that ruined the poor parents lives. These narratives are always framed as universal even though the profile sample is restricted to very few and often only one example. The article (if it can really be called that) reads like bad film noire narration. author’s sole source of information is the child’s mother. This is why I find it surprising that the piece is found in the “news” section. There is no actual research involved. He didn’t seek to find out if the woman’s experience is common. He just assumes that it is. He doesn’t talk to doctors or service providers to see if more assistance is available. Most importantly he certainly doesn’t speak to any actually autistic people. The reader is supposed to take his third hand retelling of the reality of autism as universal truth. He describes autism as an “epidemic” and a “genetic devil”.
He also seems to reject the idea that different people with autism might actually display different behaviours. He scoffs at a generic and very medical definition of autism:
Autism is a disease with a broad spectrum of symptoms that can start in the womb and last into adulthood. In one common definition, it is “characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.”
he follows that up with “That’s putting it more nicely than it deserves.”. He completely rejects any concept of spectrum or individuality in the experience of autism, preferring instead to assume the single experiences of one mother is more widely applicable than an actual medical definition.
The thing is, this isn’t reporting, there was no research involved. Rather it is just another example of a centuries old habit of third person sensationalist narratives about disability that depend more on literary tropes than reality in order to frame real world perspectives of disability.
While I have no doubt that the mother profiled is expressing her genuine feelings. The writer fails to give them any context be it from medical professionals or disabled people. Both groups would likely frame the realities of autism differently but I have no doubt that they would agree on one thing. This one woman’s reality (or interpretation of her reality) is not and should not be taken as indicative of the broader realities of autism.
Even a more tempered description of his encounter with the mother might have been less offensive. He never met the son (whose full name is disclosed in the article thus violating the child’s privacy) but talks about him as though that isn’t necessary to really “know” him.
When I said the piece reads like bad film noire narration, I wasn’t exaggerating. the author used florid language, metaphors and similes. He is absolutely framing autism as a monster.
[the child] is not a criminal; rather, a crime has been committed against him by a genetic devil called autism. It’s an affliction that seems to be growing in society like mushrooms under an autumn moon. (emphasis mine)
He talks about autism as though it’s a Dr. Jekyll & Mr. Hyde scenario as though the child exists without it. As though it took him over and if only autism could be gotten rid of the “real child” would emerge. this is reinforced by the rhetoric of disease and epidemic that he uses.
There are two things wrong with this. First and most importantly that child without autism is a figment of his imagination. He doesn’t exist and never did. the author acknowledges that autism is genetic (so at least we’re not dealing with a vaccine reactionary. Which is something I guess) that means the child has always been autistic. There is no nonautistic child in there.
Which brings us to the second problem a lot of autistic people, myself included don’t actually want to be cured. My reasons for it are primarily selfish. I like myself. Autism impacts everything I do and how I interact with the world. If I didn’t have autism, I would be a fundamentally different person. This is a pretty common sentiment but others will also be slightly less self-absorbed than me and point out that autism is a natural part of human diversity (for more perspectives on this see here, here, and here).
The thing is the author doesn’t really care about nuance or wider realities because he’s to busy creating his own where not only is the child he’s talking about a monster but so are basically all autistic people.
He appears to make random innocuous observations about the woman he’s profiling and her home and they inevitably have a horrible autism anecdote to go along with them. Like when wonders why this nice lady has tattoos–because apparently there is an identifiable “type” of person who gets tattoos and it’s not mothers of four–she has them to cover up the scars from where her son has bitten her.
Even the lack of towels in the bathroom is suspect. The explanation for which was a level of parent oversharing that I won’t recount it (the website Ollibean has guidelines about writing about your disabled children that I with the author and mother had considered). The fact that the lack of towels was worth even mentioning much less questioning is odd. I can’t even remember how many times I’ve been a guest in a house where the bathroom was inconveniently lacking in towels. In houses where there is no autistic resident. I always chalk it up to the host’s forgetfulness or lack of consideration. It’s never been worth questioning.
All of this is shared with the pretense of education but not everything gets a detailed expectation. When discussing the breakdown of the woman’s marriage he says this:
She also has a long-term marriage that is coming to an end. Her husband, Rene Juarez, loves his wife and his children. But after 10 years of living with autism …
He. Just. Can’t. Stay.
I didn’t add the ellipses. He’s actually put them in there to invite the reader to draw their own conclusions. After very conveniently setting up autism as the monster under the bed.
No other contributing factors are considered.
The child is then summarily blamed not only the breakdown of his parents marriage but also his mother’s drinking and experiences of depression. The fact that his grandfather suggested he be exorcised is added in as well. To you know really drive home the fact that he’s a monster.
The mother’s statement that her son deserves understanding and compassion is treated more like the request of an altruistic saint than something that should be taken seriously.
Basically every sentence could be dissected so I’ll skip ahead to the end where in an odd non sequitur the author jumps from discussing the woman’s charity to her single relationship status.
I tread lightly here. I’m just going to be straight with you, Sonia: You must know the chances of a new marriage are not great. Few men would step into this situation.
“Absolutely true. I know that. To be honest with you, I have accepted that my life revolves around my son and my girls. But I also have another mission to fulfill. I feel this in my heart. I will help other families that live with autistic children.”
It comes out of nowhere but seems tacked on the end to really drive home how much of a martyr she is.
The fact that this piece was published at all is troubling. The fat that a newspaper actually classified it as “news” is even more so.
It’s sensationalist trash with very little basis in reality even if we assume the mother is being honest about her opinions and experiences because of the spin the author gives it. It’s directly in line with the fictionalized biographies of historical disabled people were written to frame them as other and the people who exploited them as benevolent.
Consider Dr. Frederick Treve’s memoir about his relationship with Joseph Merrick (known as The Elephant Man) which frames the adult Merrick who Treves repeatedly misnames John as a child.
Or the promotional pamphlet for Krao Farini (known as the missing link) whose race and physical difference were used to rob her of her very humanity.
This really is just another additional to a long line of sensationalist writing about disability which serves to make those around the disabled person seem like saints while leaving the disabled person as either object of pity or horror.
It is most certainly not news. It doesn’t even have the veneer of objectivity and any concept of research was clearly not even considered.
That child deserved better. Disabled people as a whole deserved better.