#KiehlsxAutismSpeaks: Buying Face Cream won’t Help Autistic People & Neither will Autism Speaks

 

Matthew McConaughey

Image Description: A screenshot of Kiehl’s Autism speaks campaign video. Actor Matthew McConaughey is on the right. While text reading “with every share Kiehl’s is going to donate $1 to its Autism Speaks campaign   * up to $200,000 benefiting Autism Speaks”

 

There is so much wrong with the #KiehlsxAutismSpeaks campaign that I hardly know where to begin. The campaign has two components, the first is a consumer component which donates a portion of sales to Autism Speaks. The second is a social media campaign which raises money based on the number of shares a video featuring Matthew McConaughey gets on Twitter and Instagram.

 

There are issues with the messaging of the ad. There are issues with the methodology of the campaign self.  There are issues with the fact that the campaign is linked to Autism Speaks which is a very controversial organization within the autistic community.

The ad itself falls into the trap of so many public charity fundraisers for disability. It utilizes problematic language by defaulting to person first language when autistic people tend to prefer identity first language. There is also the focus on autistic children. This is an issue for a couple of reasons one of which ties into the complex connection to Autism Speaks. The other is simply the fact that so many of these campaigns focus on disabled children and tend to forget that those children grow up. This creates a real and serious service gap which tends to leave disabled adults without resources.

The connection with Autism Speaks makes it worse because as a result of their history of minimizing not only the experiences of but even the reality of autistic women, there is a real trend of late diagnosis or non-diagnosis. This means there are countless autistic women who did not have the benefit of services as children and who have to learn to navigate an autism diagnosis as adults with little or no support.

Autism Speaks did this as a result of the historical and inaccurate belief that autism is more common in boys. They created an entire campaign around this misconception. One of their best-known campaigns is likely the Light It Up Blue campaign which was designed specifically to recognize that false reality. Blue was meant to recognize that boys were more likely to be autistic. Despite new and continued research showing that women are systemically underdiagnosed with autism, the campaign continues. Also, focusing on autistic children alone ignores the generations of women who were not diagnosed because autism was not considered to be an option.

Charities, in general, have a tendency to focus on children because they are perceived to be more palatable than their adult counterparts. This has long term consequences in major gaps in access to services and resources by disabled adults. It also leaves a cultural gap where disabled adults simply don’t appear and are thus not expected to actually show up in society.

So charitable giving is often fraught with problematic messaging in general. Autism Speaks however, is more problematic than most. This is because it is both one of the largest “autism advocacy” organizations and it is also deeply unpopular with autistic people to the point that some have labelled it a hate group. The Caffeinated Autistic has a pretty good run down of many of the serious concerns that autistic people have regarding Autism Speaks.

Some of the primary concerns include the generally low percentage of funds (only 3%) that actually get spent annually on actual services for autistic people and their families. So, the Kiehl’s video campaign if it reaches the maximum 200,000 shares will only really amount to $6,000 going to actually helping autistic people. 63% of Autism Speaks’ budget is spent on fundraising and raising awareness.

The kind of awareness that Autism Speaks has raised in the past is deeply troubling. They released a video which I really demonized autistic people and suggested that they invariably ruined the lives of their families. The video tries to make the distinction between autistic people and autism but in reality, autism is not something that is or can be separated from the person.

 

*video transcript at the end of this post

They also produced a documentary called Autism Every Day (link is not to the video but there is a link to the video in this article) which featured a clip of a woman describing her fantasies about killing herself and her autistic child while that child was in the room.

Autism Speaks has a track record of promoting dehumanizing narratives around autism. They also have a history of not having any actually autistic people in positions of authority within the organization (this has changed somewhat recently). They have made some cosmetic changes to their messaging recently but they still largely benefit from their old messaging and they do not challenge or cut ties with individuals and organizations which fundraise and “raise awareness” on their behalf (I wrote about this previously).

So what kind of awareness is this campaign actually raising? I would argue none at all. We are well past the point of being able to count simply acknowledging the existence of autism and autistic people as meaningful awareness. People know that we exist. What we need now is for people to actually engage with creating a culture and a society that actually makes our lives better. As autistic writer, Sarah Luterman points out that Kiehl’s describes their special face cream (which is just a rebranded version of a product they already offered) as “a daily face moisturizer to promote autism awareness.” Luterman then astutely points out “[t]he site does not elaborate how exactly a face moisturizer would promote awareness of anything.”

Hiding behind a celebrity face and making the fundraiser so effortless also endorses uncritical engagement with a very problematic charity. People simply assume that the charity is good because a cosmetics brand and Matthew McConaughey told them so. It does not suggest that they actually engage personally with Autism Speaks in any way or engage with autistic people themselves. It may be a very effective way to raise money but it is a particularly useless way to raise awareness and it is a potentially harmful way to raise awareness. It emboldens an organization which is unpopular with the people it purports to speak for. It is infinitely ironic that an organization which calls itself Autism Speaks has spent the vast majority of its existence speaking over and silencing actual autistic people. In fact, we have our own organizations and engage in self-advocacy. The Autistic Self Advocacy Network and the Autism Women’s Network are too great examples of organizations run by autistic people for autistic people.

This campaign tells people that they can benefit a marginalized group simply by buying something. Not through any actual engagement with that group. Which reinforces ideas of separateness and the continued proliferation of false ideas around autism and autistic people.

It’s a fundamentally dehumanizing use of a saviour narrative which positions autistic people as a group needing to be saved by nonautistic people.

It’s also that truly ineffective approach where people buy something and it supposedly helps a charity. Which presents a very self-serving narrative of solidarity. “Buy a face cream that you’ll benefit from and help someone without doing anything else” That sort of campaigning particularly when trying to help a marginalized group of people is particularly ineffective because for meaningful change to occur in raising the status of an oppressed group actual engagement is needed. This is the opposite of that. This tells people that they can help a marginalized group at a distance without any meaningful action. It maintains the “othering” of autistic people.

Many autistic people have spoken out of about the campaign particularly on Twitter where the Matthew McConaughey video is being widely shared. There is even a change.org petition asking Kiehl’s to reconsider its partnership with Autism Speaks. I would add my voice to those autistic people who are asking you not to support this campaign or Autism Speaks in general.

This kind of ad campaign doesn’t raise awareness so much as it reinforces the “otherness” of autistic people. It suggests that non-autistic people can be the helpers and saviours of autistic people simply by buying face cream or sharing a video on Twitter or Instagram. It fundamentally does not in any meaningful way raise awareness about autism or autistic people.

I would ask that people take meaningful steps to creating a culture and society that is accessible to autistic people and which does not require us to be either cute children or threats to the happiness of everyone around us.

If you want to actually help autistic people and to actually be aware of us, I would suggest the following autistic activists on Twitter (just search for #ActuallyAutistic), reading autistic writers and actively avoiding and speaking out against campaigns which supports harmful organizations and which present sharing the video and buying face cream as meaningful engagement.

 

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*transcript courtesy of the Autistic Self-Advocacy Network

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?

 

 

 

 

#ActuallyAtypical: a Media Roundup of #ActuallyAutistic Thoughts on the Netflix Series Atypical

Reviews

Alternate Atypical: Reimagining Netflix’s Atypical if it were Written by Actually Autistic People

“For some reason, Netflix has classed all of this as a dramedy. The thing is it actually has the basic structure of what could have been a pretty good gritty drama. The show presents Sam and his actions as inherent and unavoidable because he is autistic.And sure there are autistic men who display the same degree of entitlement and sexism. The thing is that this is learned behaviour. So I have tried to reimagine Atypical as if it actually dealt accurately and honestly with what is going on.”

Netflix’s “Atypical” Was a Major Disappointment for Autism Representation

“Netflix did not confirm whether there were concerted efforts to include autistic writers, creatives, or actors in any large roles. Onscreen representation isn’t the same as behind-the-scenes representation, especially if that camera-facing depiction is flawed.”

Netflix’s “Atypical” is offensive, but that’s not its real problem

“On one occasion, when he is about to lose his virginity, he has a freak-out in which he punches a girl as she takes her shirt off. Another time, when trying to seduce his own therapist (ick), he breaks into her house by sneaking into an open window. Elsewhere, he humiliates his girlfriend by proclaiming that he doesn’t love her in front of her entire family.

These aren’t classic signs of autism — they’re violent, creepy, cruel and make the autistic character seem like a monster. When the show then shifts gears to make us feel sorry for Sam, the characterization becomes more offensive. Arguing that those with neurological conditions shouldn’t be held accountable for hurting others is as patronizing as it is socially irresponsible.”

Sarah Luterman has done episode synopses of all eight Atypical Episodes on the website NOS Magazine

Episode 1

“Sam then points out that his therapist’s bra strap is showing, and it’s purple. For some bizarre reason,  Julia doesn’t tell him that this is an inappropriate thing to do. The scene caps off with Julia asking if Sam would like to donate his brain for research purposes. What kind of research? Apparently that isn’t important. She then reassures him that she means she would like his brain after he dies.”

Episode 2

“As Sam narrates how roosters attract hens for mating by putting on a display, we get a flash of Sam’s mother, Elsa, in the bar, seriously considering infidelity. We get more Discovery Channel narration from Sam as his sister waves to the boy she’s interested in. He’s come to watch her track practice. This is dehumanizing. And it’s not just Sam doing the dehumanizing. It’s the show’s writers, making deliberate choices to juxtapose Sam’s discussion of animal mating with human women.”

Episode 3

“In the kitchen, Sam narrates to himself about how humans can’t be perfect because we’re not machines, thereby checking off yet another square for autism stereotype bingo. Some on Twitter have suggested that I create an autism stereotype drinking game for Atypical, but I don’t want to be responsible for any deaths from alcohol poisoning.”

Episode 4

“Elsa gets a text from Nick the Bartender, lies about it, and then accidentally drops her phone, insuring that she misses her daughter’s race. Somehow, this is autism’s fault.”

Episode 5

“A core part of the family dynamic on Atypical is that somehow, Sam’s autism makes everyone around him’s life worse. How, exactly, is unclear. It seems that the mere fact of Sam’s autism negatively impacts everyone around him to a degree where any and all terrible behavior is excused and justified. It’s a completely toxic dynamic. It’s not funny. It’s not even sympathetic. It’s horrifying. I feel sorry for Sam. He’s not the only one who is poorly written and hollow. The people around him are too.”

Episode 6

“After six episodes of a show ostensibly about autism with dozens of characters, an actually autistic  actor, Anthony Jacques, has a bit part as Christopher, another autistic teenage boy. Apparently he originally auditioned to play Sam but didn’t get the part. Robia Rashid, the creator of the show, claims that instead, they hired the “best” actor for the role. The scene Christopher and Sam have together make the artificiality of Keir Gilchrist’s autism act even more obvious than usual. Admittedly, I don’t think that an autistic actor always has to play an autistic character. But in this instance, it would have lent authenticity and subtlety that Atypical completely lacks.”

Episode 7

“Doug takes Sam to Olive Garden to “case the joint.” This means Sam is exploring the space and the menu before his big dinner with Paige’s family. For once, I actually find Sam relatable, although his continued preference to ask people questions while making eye contact instead of just Googling the answers continues to be strange.”

Episode 8

“Treating women like sex objects is not a natural extension of autism. Limiting how often someone is allowed to talk about what they love is abuse, not a real relationship. Autistic women, autistic people of color, queer autistic people and transgender autistic people exist. Autism doesn’t cause families to fall apart. It isn’t even true that families with autistic children have higher divorce rates than the general population. The fact that Netflix could release something like Atypical and run a campaign like #FirstTimeISawMe at the same time shows that Netflix completely fails to understand what disability even is to the people who live it.”

Cultural Critique

Twitter Celebs who are Ableist and don’t even realise it

“The most annoying thing about the responses by Doctor Christian Jessen, a qualified medical professional in general medicine, infectious disease, travel medicine, and sexual health, is that it’s assumed by non-autistics―or allistics―that all medical professionals are experts on mental illnesses, diseases, developmental disorders, neurological conditions, and disability in general. I’m very sorry to inform all of you but you’re wrong. The only experts of a condition, illness, or disability are those who live with it or those who study it extensively and listen to those who have whatever it is they research.”

No, Bad TV Portrayals of Disability are Not Good Learning Opportunities.

“Hey everyone, you should totally watch Atypical  it’s super informative about autism except for the pathologizing of misogyny, the uncritical look at the cult of compliance, the portrayal of autistic people as one dimensional more uncritical takes on using disabled family members as props for personal gain, serious misrepresentation of effective therapy and interventions but yeah, you should totally watch it anyway”

Let me know in the comments if I missed anything.

 

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No, Bad TV Portrayals of Disability are Not Good Learning Opportunities.

Atypical Poster

Image Description: Promotional poster for Netflix series Atypical. The Main cast is lined up on the bottom of the screen Casey (Brigette Lundy-Paine), then only the top of Sam’s (Keir Gilchrist), Doug (Michael Rapaport), and Elsa (Jennifer Jason Leigh) a cartoon thought bubble surrounded by penguins is coming out of Sam’s head featuring the show title and release date (Aug. 11)

“Hey everyone, you should totally watch Atypical  it’s super informative about autism except for the pathologizing of misogyny, the uncritical look at the cult of compliance, the portrayal of autistic people as one dimensional more uncritical takes on using disabled family members as props for personal gain, serious misrepresentation of effective therapy and interventions but yeah, you should totally watch it anyway”

I wrote the previous paragraph on Twitter yesterday in response to someone who suggested that despite Atypical’s extremely problematic portrayal of autism that it was still a tool for learning.

teaching tool

Image Description: A screenshot of a tweet with the tweeter redacted. It reads “Us NTs could use a little awareness. No show will ever completely encompass such huge important topics. But they plant curiosity to learn +”

The problem with Atypical isn’t that it’s merely imperfect. It’s loaded with stereotypes and misinformation. This tweet positions autistic people’s concerns about Atypical as merely whining and an unreasonable demand for perfection rather than the actual protest that it is against the genuinely harmful messages of the show.

I am however going to focus on the last assertion of her tweet, that the show and shows like it create genuine curiosity to discover the truth about the marginalized peoples being misrepresented.

This is patently false. The actions of this person actually exemplify that. This tweet only came about because autistic people had pushed back against their uncritical demand for a second season. It also came after their original rebuttal of “If you don’t like it you don’t have to watch it”.

This latter argument entirely ignores the harm that can occur if people watch harmful portrayals of disability and believe and internalize those messages. Disabled people don’t have the luxury of just ignoring harmful representation. We need to know what happened so we can challenge it.

The fact that they originally wanted me to just check out is entirely indicative of someone who didn’t want to engage with the show in a critical way. The later suggestion that people might use it as a jumping off point to learn about autism was just a last ditch effort to try and deflect uncomfortable criticisms about something they enjoy. They didn’t want to have to potentially feel uncomfortable about the implications of the media they consume.

I have yet to see op-eds about individuals who have watched Atypical or any other awful portrayals of disability that talk about how the show inspired them to take a deep dive into the autistic community and then truly learned something.

The critical pieces I see come from disabled people themselves or from writers who have seen the backlash and are reporting on it and this is by design.

In the last five years or so, disabled people pushing back against awful portrayals has been getting more mainstream attention. (see the pushback against the film Me Before You as the perfect example). This hasn’t resulted in better disability portrayals but it has changed how disability portrayals are marketed.

Now it is almost inevitable that presenting a disability portrayal as accurate and authentic will make up in some part of the marketing of that film or television show. This is certainly true of Atypical where show creator and writer Robia Rashid gave an interview which hinted at a personal connection to someone with autism and where she talked about all of the consultants and parents of children with autism that will present on the sets. She talked about how neurotypical actor Keir Gilchrist had previously worked with autistic children.

We saw the same phenomenon with the film The Accountant. A film, I will remind you whose entire plot revolves around an autistic accountant who was also a skilled and dispassionate killer (he is often described as a hitman, however, at no point in the show or in his back story is he actually ever explicitly paid to kill somebody). Even this ridiculous character whose description is so unbelievable was treated to the veneer of authenticity by their marketing department.

The people making the shows and films are already controlling for the off chance someone will become curious about the genuine authenticity of the portrayal. They are building in safeguards to actually mitigate curiosity. The goal of these portrayals is that they be accepted at face value and they are.

true representation

Image Description: A screenshot of a tweet that reads “@Atypical is such a true representation of autism, I really hope it raises awareness and gives people a better understanding” it closes with a clapping emoji

The person who wrote this tweet later told me in a tweet which they quickly deleted that they had an artistic brother and that’s how they knew how “authentic” it was. considering that the tweet was deleted so quickly that I couldn’t get a screenshot of it I remain sceptical of this claim, though it is far from impossible. The family members of disabled people can, unfortunately, be a major source of misinformation and misunderstanding of disability.

people first

Image Description: A screenshot of two tweets with the original author’s information redacted by images of a tennis ball and of floppy disks (I got the screen shot off of Twitter). The first tweet reads “the “people first” language in this show!!! @Atypical this is so awesome! person then diagnosis! “Child with autism”, not “autistic child”. Second week which is a response from the same author to the first rates “such a huge step forward in the normalization of the importance of mental health! and representation!!”

it is not hard to find autistic people who prefer identity first language. It is widely held to be the predominant preference of the autistic community. So the fact that this individual was celebrating people first language which is contrary to that fact that only shows that they don’t know better but that they will use the show to validate their preconceived notions around language and identity in ways that invalidate autistic people and their preferences.

These are pretty representative of the sorts of comments that portrayals of disability will receive from nondisabled people. They are their internalization’s of that media’s messaging or they will use that media to validate their preconceived ideas. As Twitter user @sorrysorryetc pointed out, the show was so poorly written that it was  often unclear what the intended message was particularly as it pertains to language usage so people are just going to end up taking what they want from the show and not actually interrogating whether or not they have interpreted it correctly or whether the show was wrong entirely.

The mere existence of bad portrayals of disability are not learning opportunities. Watching these shows can be educational if it is done with a critical eye and if it is being fact checked with the people being presented.

For the shows to be truly educational they would need to be accompanied by a comprehensive syllabus and lessons learned would likely not be about disability itself but rather how media helps to construct oppressive systems around disability by misrepresenting them to an audience that is assumed to be nondisabled.

 

 

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Alternate Atypical: Reimagining Netflix’s Atypical if it were Written by Actually Autistic People

Atypical Poster

Image Description: Promotional poster for Netflix series Atypical. The Main cast is lined up on the bottom of the screen Casey (Brigette Lundy-Paine), then only the top of Sam’s (Keir Gilchrist), Doug (Michael Rapaport), and Elsa (Jennifer Jason Leigh) a cartoon thought bubble surrounded by penguins is coming out of Sam’s head featuring the show title and release date (Aug. 11)

I have now completed watching all eight episodes of the first season (it ended on a cliff hanger so they’re clearly angling for a second) of the Netflix series Atypical.

It goes without saying that this post will include spoilers and quite frankly you’re welcome. Now you don’t have to watch it.

The show is in a word terrible. The autistic character Sam has no perceivable personality and is largely just a collection of autism diagnostic criteria and stereotypes. His only driving factor is to get a girlfriend.

Pretty much all of the characters are irredeemably awful.

Elsa, the mother is the archetypal overbearing autism mom. She is controlling to the point of actually damaging Sam’s ability to function in the world. The show doesn’t actually really concretely address the extent of the harm. She is attention seeking and presents herself as a martyr on the altar of autism. Every horrible thing she does is blamed on Sam, from ignoring her other child to having an affair.

Doug, the father starts out promising but turns out to be awful. initially, he just seems to be cluelessly but genuinely trying to connect with his son. It is later revealed that after Sam was diagnosed he left the family for eight months because he couldn’t deal. He spends the series which takes place well over a decade later enabling Sam’s creepy misogynistic behaviour under the excuse of trying to make up for leaving. He does have some good lines challenging some autism moms person first rhetoric but in the context of everything else he’s still awful.

Casey, Sam’s younger sister is the only genuinely likeable person in the show. She treats him like a human being, though she uses him as a prop to further her own goals by referencing him in her interview to get into prep school. This is actually pretty realistic and in a better show might have been a genuine commentary on how even loving accepting family members can be ableist. Unfortunately, Atypical is not that show. Claire is the most well rounded and complex character in the show.

Evan, Casey’s boyfriend is a nice generic good looking boyfriend. Pretty much sums him up. They hint at a difficult home life but it’s basically a failed attempt at making him not a generic boyfriend character and as an excuse for why he’s a convenient human lie detector.

Julia Sasaki, Sam’s therapist, doesn’t know how to be a therapist. She’s ostensibly supposed to be helping him with life skills but can’t even set up clear boundaries. The first indication that Sam is creepy and doesn’t know how to talk to women is when he points out her bra strap is showing. She’s embarrassed but doesn’t use the opportunity to tell him that this might be an inappropriate behaviour. This foreshadows the rest of the show. Where Sam invariably gives someone a lot of warning that he might do something shitty and that person does nothing to stop it. No one explains anything to him in accessible terms.

Zahid, is Sam’s only friend and coworker. On the one hand, Zahid is truly accepting of Sam which is great. If only that wasn’t entirely undercut by his cartoonish level of misogyny and the fact that he eggs on an facilitates Sam’s being a creepy piece of shit.

Paige, Sam’s (ex)girlfriend, while Sam does treat her abysmally which is inexcusable, Paige also takes advantage of him and creates a controlling relationship where she defines all aspects of the relationship. She won’t let him talk about the things that interest him and in fact, implements a punitive system to limit his ability to steer the conversation.

For some reason, Netflix has classed all of this as a dramedy. The thing is it actually has the basic structure of what could have been a pretty good gritty drama. The show presents Sam and his actions as inherent and unavoidable because he is autistic.And sure there are autistic men who display the same degree of entitlement and sexism. The thing is that this is learned behaviour. So I have tried to reimagine Atypical as if it actually dealt accurately and honestly with what is going on.

The show would need more autistic characters to act as counterpoints to Sam. This could be achieved by having autistic activists who engage with Elsa at one of her autism walks. They would challenge her and of course, she would inevitably utter the all to common phrase “you can’t speak for my child”. Elsa would double down on her awful behaviour which would be reinforced by the uncritical support of her autism mom’s support group.

The inclusion of other autistic characters would help clear up the issue around the group’s use of language. Showing autistic people unapologetically identifying as autistic and owning their identities would throw Sam’s harsh reality into sharp relief.

Sam would spend more time second guessing everything he says because his mother’s constant control would have destroyed his self-esteem. The show would make it clear that he has no escape at home from the bullying he experiences at school because home is just a different kind of abuse.

It’s hard to figure out what to do with Zahid because in Netflix’s version he is the only person who genuinely accepts Sam. Realistically though his blatant sexism is likely what would trigger Sam to conclude that a girlfriend would fix all his problems. I hate getting rid of the accepting force but realistically the contradictions of the character don’t work well.

More realistically, after finding no acceptance at school or home Sam would be ripe for coercion and abuse from someone who presents a veneer of acceptance. Someone who thinks it’s funny to put Sam into uncomfortable situations with women. Not someone who genuinely thinks they’re helping.

Sam’s first attempt at a sexual encounter (which ends in him hitting the woman he’s with) might at least flirt with actual consequences. Maybe She calls the cops and they send an ambulance which is conveniently staffed by Sam’s EMT dad who talks her out of pressing charges.

This would at least more concretely deal with explaining why Sam has built up this idea that his words and actions have no meaningful consequences beyond how they make him feel.

Clear parallels would be drawn between Elsa and Paige and show that Sam is essentially exchanging one controlling relationship for another.

Julia Sasaki would be as ineffective and there would likely be more direct controntations between her and Elsa. the show might actually show how therapists and medical professionals buy into stereotypes of disability and how this invariably hurts their patients.

Paige would still plan the silent dance but she’d likely call the media and be publically celebrated for her altruism.

Casey wouldn’t change much but a better show would offer more context about her. Show how she learned that it was okay to use her brother as a prop. Interrogate why the prep school interviewer not only let her get away with it but bought into it completely.

That is what would make Atypical more real. Really, however, a better show would humanize autistic ppl and not turn us into victims. A better show would move away from the autistic white boy norm. An actually affirming autistic love story might include finding a partner who is able to communicate more clearly. This might allow for a more realistic portrayal of romantic and sexual exploration.

What about instead of a first failed sexual experience that ends in violence. Sam still gets overwhelmed but that’s okay. What if instead of ending the season with a hand job in an igloo. Sam has a partner who is willing to try different sexual activities so that they have a mutually enjoyable experience. What if a handjob is shown as a more comfortable introduction to sexual activity? What if that’s where he stays comfortable and that’s okay? What if he was in a relationship where he understood that women are people and so they used creativity to make sure that he is able to reciprocate for his partner?

What if his mother wasn’t sexually repressive?

What if he had autistic friends? If not in person then online.

What is an autistic love story was written by autistic people and a major company actually produced it?

What if…?

 

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But You Haven’t Seen it Yet: Why Critiquing Marketing of Future Portrayals of Disability is Important

The Good Doctor

Image Description: Promotional poster for the upcoming ABC show The Good Doctor. The title appears in blue over a grainy black and white image of half of series star Freddie Highmore’s face (he is a young white man with dark hair). In contrast to the black and white, his eyes are a vibrant blue.

Yesterday, I saw promotional videos for two television shows that will be premiering next fall. Both shows deal with characters that are likely autistic (though only one will acknowledge that). They were the trailer for new ABC medical drama The Good Doctor

and a first look video of The Big Bang Theory (TBBT) spin-off Young Sheldon. That video has since been removed so I can’t link to it.

I am concerned about both. I’ve written about my issues with how TBBT theory deals with the character of Sheldon Cooper who is deeply coded as autistic but the creator and writers refuse to acknowledge that (see here). Creating a prequel series focusing entirely on a Young Sheldon Cooper is only going to exacerbate those issues and concerns.

Based on the first look video, the prequel series is unlikely to be faithful to TBBT cannon. Sheldon has had some personal growth on the show but references to his youth generally paint a static picture of a walking autism stereotype. He doesn’t like to be touched, he is rigid in his rule following, he is blunt to a point beyond rudeness crossing the line into cruelty and scientifically gifted to the point of probable savantism.

These aspects are present in Young Sheldon but it appears that the show intends for the young to experience some personal growth or the series will be filled with a child tattling on his much older classmates for dress code infractions (and that will get old really fast).

He is shown possibly cultivating a touching relationship with his father. A character who is wholly absent from TBBT (having died prior to the events of the series) and generally not referenced with much emotion by any of the characters who knew him.

It is unlikely that the series will be able to stay true to a character who would eventually grow up to be Dr. Sheldon Cooper of TBBT without the content getting dry but as a prequel, it is unlikely that the series will remedy any of the more problematic aspects that arise from the staunch refusal to acknowledge that Sheldon Cooper is neurodivergent.

The show is likely to largely ignore cannon but its primary source of humour is likely to be the same as that surrounding his older self, at the expense of his neurodivergent behaviour. We can likely look forward to a show packed with a young socially clueless Sheldon constantly putting his foot in his mouth. I can only hope that viewers get tired of it fast and the show dies a swift death.

In the series The Good Doctor, the character’s–Dr. Shaun Murphy–autism is front and centre. The show is from David Shore who previously created House MD. It looks like he’s trying to recreate the popularity of an emotionally unreachable disabled doctor with this American remake of the Korean drama Good Doctor.

The trailer sets up red flags for a problematic portrayal of autism from the word go. It hits on a number of tired Hollywood stereotypes about autism (many that are shared by Sheldon Cooper)

The character is a white man (ditto Cooper)

He is a savant level genius (ditto Cooper)

He is labeled as high-functioning (for more on why functioning labels are gross, see here)

He is played by a neurotypical actor (ditto Cooper)

To add insult to injury, the show’s summary on IMDB asks this question

can a person who doesn’t have the ability to relate to people actually save their lives?

This plays into the lie that autistic people lack empathy. A myth that is increasingly being debunked.

The trailer also sets the show up to be classic inspiration porn. A story of overcoming the prejudices of a hospital board that doesn’t want to hire him and potentially overcoming autism itself.

The most believable part of the trailer is the scene where a room full of people try to justify discrimination. Believable that is until an advocate for Dr. Murphy (because of course the autistic character isn’t advocating for themself) launches into an impassioned speech about how hiring Shaun will act as an inspiration to others.

We hire Shaun and we give hope to those people with limitations that those limitations are not what they think they are. THAT THEY DO HAVE A SHOT!!!”

*bursts into tears from being so moved*

I’m kidding. This shit makes me sick.

It makes me sick because this character has been created specifically to be palatable to a neurotypical audience. He has been given special skills that exist entirely to make up for the less palatable autistic characteristics. Sure he’s socially awkward and might react strongly to loud noises but he’ll save your child when everyone else would fail. That but is the problem. We’re unlikely to see a medical drama where the doctor just happens to be autistic without the bells and whistles of a highly fictionalized savantism.

But neither show has been released yet, so why am I already concerned? I know I’ll get asked because I’ve criticized the marketing for media portrayals of disability before.

The simple answer is that the marketing is in and of itself worthy of critique. How companies choose to sell stories around disability can have as much impact as the stories themselves. I find it unlikely that CBS (Young Sheldon) and ABC (The Good Doctor) are catfishing their prospective audiences and that the shows will be drastically different from what their marketing says they will be.

In the case of Young Sheldon, get ready to laugh at an awkward child (who will be denied a diagnosis so you can pretend you’re not laughing at a disabled child) for his awkwardness.

In the case of The Good Doctor, prepare to be inspired by a highly stereotyped and false but comfortable version of autism that tells you that disabled people are valuable only if they can overcome their disabilities.

I want better stories. I’m sick of disability portrayals. I want actual representation but that would require actually hiring disabled people.

 

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If You Care about Autistic People Don’t Just Perform Solidarity

So April is upon us and along with it Autism Bewareness Month (I stand by that word choice). Tomorrow is World Autism Awareness Day and I am already feeling suffocated by all of the faux awareness.

Awareness would be great if it actually meant that people were actually educating themselves about the realities of autistic people. If it meant promoting the voices of actually autistic people. I would be ecstatic if that real awareness translated into acceptance and action. Action, that meant fighting for the rights of autistic people. Unfortunately, more often than not we get shallow shoutouts.

The danger of those shoutouts is not only in their inefficacy and often patronizing messaging, it is also in that they benefit problematic organizations.

Yesterday, I was scrolling through my Facebook feed when I noticed that a friend had added a border to their profile picture. The following image is my own photo with the border as illustration (don’t worry it never made it onto my profile).

autism speaks frame facebook

Image description: A woman with short blond hair, blue eyes and dark blue lipstick, looks directly at the camera. On the bottom is s white border with the Autism Speaks logo (a blue puzzle piece over the words Autism Speaks) and followed by the words “different not less”

First, let’s deal with the messaging. On its face, it’s a positive message but it also doesn’t really tell you anything about me or my experiences as an autistic person. It’s also so basic that it merely pays lip service to my humanity rather than actually affirming it. It exists in the same vein as the empty “special needs” memes that promote “acceptance” through pity.

10940999_769959393059095_6633527766282533542_n

Image description: Black text on a pink background the text reads “anyone willing to post this and leave it on their status for 1 hour? It is Special Education Week & Autism and ADHD Awareness month–This is in honor of all children who struggle everyday”

Images like this often position themselves as dares, the suggestion is do you dare? are you brave enough? The message that those who don’t are morally suspect. Then the images don’t share any actual information but reaffirm the preconceived notion that to be disabled is to suffer.

Not only is this not true awareness it is active misinformation that spreads pity.

Returning to the Autism Speaks Facebook border. While is isn’t as aggressive in its approach to getting people to use it, the end game is the same. You can feel good about the fact that you’ve done something. You’ve helped raise awareness. Admittedly an awareness that consists largely of an acknowledgement that autistic people exist and a general sentiment that it’s probably best to be nice to autistic people.

It doesn’t tell you why you need to be reminded of these facts. It doesn’t tell you about the real risks of violence and bullying that autistic people face. It doesn’t tear down stereotypes about autism. Which means that people are likely going to continue to comfortably believe the misinformation they may have internalized.

This kind of solidarity is predominantly a performance. It may come with good intentions but it ultimately does little or nothing to actually help autistic people. It does make people who add that border to their profile picture feel warm & fuzzy though.

One thing that the widespread adoption of performance solidarity like that border is that it gives a lot of publicity to the organization that created it and that’s a problem.

Autism Speaks is an organization that has a long history of speaking for autistic people with little or no input from actually autistic people. It has spread dangerous narratives about autistic people. It has supported anti-vaccination narratives.

While there have been changes in the organization and it no longer promotes a cure narrative and is no longer overtly anti-vaccination. It still widely benefits from it’s history peddling those dangerous narratives.

consider how the White House is going to “Light it Up Blue” (a practice created by Autism Speaks) tomorrow for the first time in years after the Obama administration halted the practice, in large part because of feedback from the autistic community. Donald Trump is friends with Bob Wright, one of the founders of Autism Speaks and the source of many of the dangerous narratives that the organization no longer officially supports. Trump is also sceptical of vaccines.

So regardless of their official position change. Autism Speaks is still largely associated with those narratives and they crop up in very visible ways. Autism Speaks is almost certainly going to financially benefit from this connection.

Despite their official change of heart, Autism Speaks is still widely disliked by actual autistic people who remember the years of demonization from the organization. It is also far too early to tell whether the official changes in policy will translate into real change in the actions the organization takes.

So, I would ask you not to change your profile picture to include that border this April. I would ask that you not support Autism Speaks.

If you really want to support autistic people this April and hopefully beyond it, you can support organizations that are run by autistic people like the Autistic Self Advocacy Network and the Autism Women’s Network. You can read the work of actually autistic people. You can promote and amplify their voices and work. You can financially support them (shameless plug for my tip jar).

These are things that can actually create a more nuanced understanding of autism and a positive kind of awareness. An awareness that leads to acceptance and action on the right of autistic people.

 

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