I’d commented on the ASAN/Sesame Street split earlier, but didn’t think anybody really cared. I’ve been surprised to see the issue in more mainstream outlets in the meantime, including today in Slate, where it’s currently the front page item.
Briefly, autistic people worked with Sesame Street to create a character that told a different story about autism than Autism Speaks. Now, Autism Speaks is using Julia to promote materials stigmatizing autistic people, and the Autistic Self-Advocacy Network (ASAN) released a statement formally removing their support.
Sarah Luterman explained all that in the Slate piece, very clearly. It’s generally considered extremely disrespectful to say, “Hey, you know that project we worked on? We’re going to use it to promote your political adversaries and we’re doing it in your name. Yeah, we know it harms you and defeats the purpose, but we don’t care. Fuck off.” That shouldn’t be controversial. It is, though, because the personhood of autistic people is controversial.
Let’s talk about the comments section. Right now, this is the most upvoted comment:
One of the downsides of the new Autism Spectrum Disorder definition is that it includes both people like the author, who is obviously high functioning, as well as people with severe cognitive problems, minimal verbal skills and little or even no social ability.
I welcome so-called “neurodiversity” and as a scientist, I see it all the time. Sheldon on the Big Bang Theory is a pretty extreme stereotype, but something like his personality is familiar to anyone who’s been in physics or math.
That said, parents whose children have severe cognitive impairment will require a lifetime of care. You may say that looking for a “cure” is offensive, but few parents would choose to have a child that is dependent on them for the rest of their lives and potentially thrown into an institution when the parents die.
This person claims to be a scientist. If they are, they should already understand the scientific justification for subsuming Asperger syndrome into ASD. I won’t rehash it here. They’re not concerned about scientifically classifying autism.
It was JUST in the news that an important study came out showing the term “high functioning autism” was misleading and should be abandoned.
The gap between intelligence quotient and Vineland Adaptive Behaviour Scales scores remained large with increasing age at diagnosis for all children. These data indicate that estimates from intelligence quotient alone are an imprecise proxy for functional abilities when diagnosing autism spectrum disorder, particularly for those without intellectual disability. We argue that ‘high functioning autism’ is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice.
“As a scientist,” the top commenter is full of shit and 2 months behind on the literature. Didn’t they feel stupid as soon as they typed the phrase “welcome so-called neurodiversity.” Everybody knows the negative connotations of “so-called.” In fact, if you go looking on the internet for autism and neurodiversity stuff, complaints about functioning labels and Big Bang Theory are pretty popular.
Then there’s the acceptance of social Darwinism. If we had a decent public health system, autistic people would get support from the state, so they didn’t need to depend on family members, who might abuse the power over them. If institutions are bad places nobody would want to be thrown, fix them. This person is saying, “Because neoliberalism is eternal, take one for the team and be labeled a disease because other autistic people are even less wanted. Be glad you can talk.” Um…fuck you, too.
The next comment is there to praise the first:
Yes, 100% agreed. As an addendum: many severely affected autistic children have significant motor deficits. Who wouldn’t want to be “cured” of bed wetting? Or of severe hypotonia in your hands, making fine motor skills, like buttering bread difficult? These are the life skills that can be the difference between living an independent life, or having to be institutionalized (when your parents die).
Now we’re dealing with people who don’t understand the concept of comorbidities. They just wanted to find an excuse to associate us with bed wetting, furthering the impression that we’re eternal children.
The only thing all autistic people have in common is autism. Hypotonia is not autism. Bed wetting is not autism. In people with comorbidities, it’s unknown if the causes overlap with the cause of their individual case of autism. Nobody knows if those are essential features of autism. We should treat them in any event. But that’s not the same thing as curing autism. If someone’s autistic, people tend to blame all their problems on autism.
The next popular comment:
My 50 year old uncle is severely autistic. He is not able to live alone, he can not prepare food, he needs help in the bathroom, his clothes have to be picked out and he needs help getting them on, etc. He has the mental age of around 4. He loves to swing, do puzzles and watch cartoons.
To say that a parent would not “grieve” having a child that will never “grow up” but will grow old, that will need significant care and help until the day he dies… is extremely narrow minded. Sure, my grandparents had a physically healthy child, but he will always be a child mentally. He has limited capacity to show love. That’s extremely difficult for parents, who wish the world for their child.
The disability rights movement is asking you to consider something radical: it’s ok to be disabled. That man has dignity and nothing to be ashamed of. He can experience joy.
The same commenter says he “loves to swing” but also “has limited capacity to show love.” Which is it? They had no problem identifying things he loves. Nobody says pets can’t communicate affection because they can’t talk. That’s just stupid. Do people’s children love their parents before speaking their first words?
The social Darwinism theme recurs a lot:
It is perfectly normal and appropriate for a parent to grieve when they lean that their child has an issue that will make them really different from their peers in a way that will cause them to struggle socially for their entire life. It is also normal for such parents to grieve when they lean their child might be dependent on them for the rest of their lives, and worry about what happens to their child when they are no longer able or alive to care for them.
What’s gross about this comment is that it excuses bullying and ostracism and accepts them as normal. As if the child suffers because their exclusion is a necessary part of the universe, imprinted in their DNA. If parents didn’t teach their children how to bully by example, they wouldn’t do it. We’re autistic, so of course this person can lecture us about what’s “appropriate.”
Literally one of the founding documents of the neurodiversity movement is called “Don’t Mourn Us”, and it’s directly about this topic.
But this grief does not stem from the child’s autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents’ attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child’s actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.
I invite you to look at our autism, and look at your grief, from our perspective
They aren’t even listening. Before we even got started, we understood this normal parental grief. The first 3 paragraphs of the text are about it. Then our contribution to the discussion is an alternative way to think about autism.
These people haven’t even tried listening. I don’t understand why these people are so motivated to shit on disabled people who basically want normal standards of respect to apply to them. If it’s rude for me to call you a useless, childish burden, it’s rude for you to do the same. It shouldn’t be controversial, but it seriously pisses people off.
This person is less subtle in talking down to us:
Julia, darling, let me help you out:
ASD is a developmental disability that is hard to properly diagnose and even harder to treat properly. I can’t speak for you and your upbringing and how you experience your Autism, but I can tell you that the fact that you can put finger to keyboard and express yourself in this piece is a sign that you have no freaking clue what it’s like to parent a child who doesn’t speak. Who doesn’t eat. Who self-injures and is never really present in your world. You, to put it mildly, have no clue what it is you’re talking about. When you bring a child into the world and then learn that they will likely need some level of intervention to bring them to a level where working outside the home is possible, you grieve. You grieve because not because that child isn’t perfect. That you don’t love them. You grieve because it is scary. You literally have no clue what direction your lives will take.
My son is very high-functioning now. But he didn’t talk at all until 3. Didn’t eat until 4. Didn’t even notice another child in the room with him until his sister was born at around 18 months (which is when he was formally diagnosed). Nearly six figures of therapy, feeding clinics and specialized social therapy groups later, he presents minimal symptoms to the outside world. But at 9, he still hasn’t hit puberty. He hasn’t dealt with bullies quite yet. Put simply, we have no clue what his social presentation will be like by the time he’s 18. We have no real idea if he’s going to be able to work. We just. Don’t. Know.
So that is why parents need to hear that it’s ok to be angry and be sad and be in doubt. It’s ok to wonder what the heck you ever did wrong to deserve the stress and expense and fear, to know that it’s ok to feel that because you need to get through it to be the best parent and advocate you can be.
That’s why it’s ok to grieve.
First, we’re autistic but not too dumb to know what concern trolling is. Second, by definition, every autistic person has gone through diagnosis and (lack of) treatment issues. I know I’m being scolded, but it’s not for anything that makes sense.
Next, he makes the false assumption that there are no autistic people who can type and also have autistic children. No, seeing that we can type in English doesn’t give you special knowledge of our parenting experience.
But then he says something non-bullshit: “You grieve because it is scary.” He’s afraid of autism. Nobody knows what their kid will be like at 18 when they’re 9. It doesn’t make him a special martyr. His normal kid could fuck up at 16 and die in a car accident or go to jail. They could have a head or spinal injury playing sports. If he didn’t take those possibilities into consideration before having a kid, he actually failed in his duties. Don’t blame autism for discomfort with risk.
Parents are grieving a lot because their heads are up their asses, as illustrated by these comments.
Oh, the irony of parents wailing that we just don’t understand how they feel and they have a right to feel that way, to be angry.
I don’t think people understand that the comment thread is a microcosm of life with autism. The utter futility of trying to get people to treat you like an equal human being, day after day.