Interactions online about the autism spectrum can result in a lot of heartfelt discussion…and a lot of heartfelt disagreement.
That holds true with everything I write here, no matter the specific topic. I receive some amazing, positive feedback from people. And some very pointed criticism as well.
One thing I’ve noticed is that the criticism usually breaks down into four broad categories. I thought I would summarize those four types of criticism below, along with my response to each.
What stands out to me, as I sort through the various disagreements, is that there does seem to be an implied question that runs through all of them: who gets to discuss autism issues?
Criticism is good. Dialogue is healthy. Frequently, the feedback I get is sincere and well-intended, no matter how strongly some may disagree with my take on things. My only goal with this post is to contribute my thoughts about these issues, point out the underlying theme, and hope that this exchange can be helpful in some way.
I’ll put the 4 counter-points to my views in bold.
Autism Speaks wants to help parents find ways to alleviate challenges posed by autism. People like you who push for “acceptance” just want to pretend that autism is a gift and that challenges don’t exist. Stop criticism Autism Speaks.
What I would say is that people advocating for something like acceptance are not saying “it’s a gift” and denying that there are negative aspects to life on the spectrum. In fact, many of these folks state repeatedly that autism can be a disability and they have no problem acknowledging the challenges and the hard days. So, I don’t think the conflict is “acceptance” vs. the Autism Speaks (AS) view.
The conflict, as I see it, just gets down to: what’s the best way to create better lives for autistics? The language of Autism Speaks is not simply describing the disabling aspects of autism…they refer to autistics using animalistic, dehumanizing terms…they are “burdens”, “tragedies” and so on. This kind of language stigmatizes autistics…it’s not helping them, it’s throwing them under the bus as part of their fund raising efforts. It’s a cruel, demeaning rhetoric that works against the very people AS claims to support.
I’ve heard more stories than I can count about parents taking their autistic kids to AS walks…only have to have a speaker from the group get up and describe autistic kids as “damaged”, as “burdens”…with the kids standing right there in front of them. Even if, for one reason or another, those children didn’t hear it or notice…this is not the way to advocate for anyone. The message of Autism Speaks is just tone deaf and stigmatizing. It doesn’t promote better understanding of autism…it promotes outdated stereotypes and painfully negative views of autism.
It’s also worth noting that AS represents a parent perspective…when they talk about the “burden” stuff, they’re talking about the challenges parents face raising autistic children. They forget: the kids are valuable in and of themselves. Parent perspectives are vital and should absolutely be a part of these discussions…but autistic perspectives are just as vital. AS forgets this. Where you or I might see a person on the spectrum, Autism Speaks sees a disease, an “epidemic”. They forget that autistics are human beings.
I would add something that is striking to many of us…AS seems to not notice this: autistic kids? Grow up to be autistic adults. Adults who can communicate in many cases, either with words or through alternate methods…they are adults on the spectrum with stories and perspectives and a desire to take part in these discussions…yet AS consistently excludes these perspectives. Autistics with more severe communication challenges, who may not be able to participate in these discussions? They actually deserve more sensitivity and care and respect, not less. But instead, Autism Speaks reserves the harshest rhetoric for them, the most vulnerable…this is wrong and disturbing for many of us.
Those opposing Autism Speaks, such as myself, just want the opposite of all of this dehumanizing rhetoric. Not to deny the difficult stuff…no one wants to pretend there aren’t hard days. Many autistics who accept their autism still struggle with sensory pain and/or communication difficulties and/or many other issues that can be disabling. And yet…they still have a profound need to be recognized as human beings…they still want to live with a sense of dignity, respect…and to be part of ongoing discussions about what autism is and what it means to be autistic.
Again, the conflict here, at least as I see it, is not “autism is a gift” versus “autism is challenging”. The conflict is: “What is the most humane, constructive way to discuss autism?” versus “What is the most stigmatizing, destructive way?”
My child has autism; they are unable to speak or care for themselves in any way. If you can speak and interact with people, you don’t have real autism. People like you just make it harder for others to understand what autism is really like.
Autism is a spectrum. It consists of a wide variety of traits, meaning that autistics can be very, very different from one another. Some folks struggle with communication. Others can communicate, but have challenges with social pragmatics. People can struggle with sensory issues, executive function and so on.
Traits will vary. Personal stories will vary. These differences do not create a distorted view of autism…they don’t distract from what it’s “really like”. In fact, they’re a perfect expression of what it’s like: a spectrum.
This criticism is by far the one that I receive the most. When I hear this reaction, I can always sort it into two camps. The first one, I can empathize with: some people worry that if an autism story is told and it is different from the autism in their life, it somehow diminishes their own experiences; it takes attention away from issues that they feel need to be addressed by society at large.
All I can really say is that different experiences on the spectrum are not mutually exclusive. One story does not cancel out the other.
We can and should tell all of the stories…it’s the only way to truly represent the complex nature of autism.
If we look beyond difference and variety, I think you find similar goals: we need an increase in the number and quality of supports and services for autistics. And we need more research and development aimed at providing these supports and services.
I don’t think this happens if we try to define autism as narrowly as possible and push out stories that may not match our own. I do think this happens if we (all of us, together) open up and honestly tell our stories. Those on the spectrum, their families, friends, and so on- I think allowing all of these perspectives to be shared and heard, it promotes a better understanding of autism and makes it easier to begin figuring out how to generate constructive, realistic solutions.
Those worried that different stories might distract from the big issues in their life…I don’t agree, but I get it. I know in some cases people say this sort of thing because they’re hurting, concerned for the future.
There is a second group who make this “real autism” argument and I can’t really bring myself to care about their point of view.
Some people treat autism discussions like a contact sport. It’s more about territory than substantive issues. So…not infrequently..I’m told, “You don’t know real autism.” And it’s clear from the tone that folks in this camp are just jockeying for position, using autism as their own online version of King of the Hill. In their minds, if they belittle enough people, demean imaginary opponents, they win points, gain ground. I gather they want to be viewed as authorities on the subject, and to do this, they put a lot of effort into tearing down others.
It’s a game for them, not a discussion.
Just know: diminishing other perspectives, privileging your own…this doesn’t make your autism more “real”; it just makes your criticism small, petty and inhumane.
The territory people…I’ve learned to just file them under “ignore” and move on. They’re never difficult to spot.
I don’t get why anyone would seek an autism spectrum diagnosis as an adult. If you’ve made it that far, what’s the point?
This is another statement that comes in a few different flavors. Some people are genuinely curious. Other people are asking for themselves; they feel they may be on the spectrum and are sincerely interested in sounding out whether or not they should pursue a diagnosis. And some people just want adult advocates to shut up; they ask this question as a round about way of closing down a point of view they don’t like.
My answer is the same in all cases.
First, self-knowledge makes it much, much easier to navigate life. We are born into identities and roles that the world forcibly crams us into and pressures us into accepting. Examining our own nature, stepping outside of these artificial identities…this can be a valuable, necessary experience. And that is as true for those on the autism spectrum as anyone else. To me, it doesn’t make sense to have an imaginary “stopping point”, where, for no particular reason, you should abruptly stop questioning your sense of self. No. You get to do that. Autistic or not, you get to do that, and it’s okay to do that at any point during your lifetime. It is your absolute right to do that.
Furthermore, there are extremely valid reasons for adults who feel they may be on the spectrum to sound out the possibility of a diagnosis.
If you are on the spectrum, but undiagnosed, it is very easy to develop coping strategies that work against you. This is what happened in my life. Not having an ASD diagnosis until the age of 30, I tried to deal with social challenges in ways that ended up doing more harm than good.
I felt pressured to hide differences…I put a huge amount of effort into “blending”, concealing a lot of my social confusion, as well as my sensory sensitivities. To some degree, I did manage to “blend”…but the end result was a lot of exhaustion, anxiety, depression and self-loathing.
Only when I finally received a diagnosis at the age of 30 was I able to piece together the specifics of my issues with social pragmatics and sensory issues. Only then could I develop new, beneficial coping strategies that were based on an understanding of my nature…coping strategies that massively improved the quality of my life.
Adults and autism diagnoses: what’s the point?
2. Digging out of the toxic, maladaptive ways of living that you can get mired in all because you lack an accurate diagnosis. And since, in place of that lack, the world will always pressure you to be something you’re not, a diagnosis becomes all the more important.
I actually don’t need to summarize the final criticism. I can just post it in full. For kicks. My name popped up in the comments of another blog awhile back. People were discussing the fact that I view autism as part of who I am, not a disease…and a neurologist weighed in with his take. (Not exactly sure why he refers to me as “Ms.” I can’t tell if he’s just confused or if it’s his version of passive aggressive). The comment:
This seems to be suggesting that only neurologists, or properly certified doctorly sorts, can discuss autism. And I have many positive discussions with mental health professionals, so I don’t believe this is a common sentiment. I just wanted to share it because it’s a lovely example of “ad verecundiam”, the logical fallacy also know as the “appeal to authority”. It’s a good fallacy to know when perusing autism information.
To be sure, a neurologist focused on autism issues certainly has reason to claim space with the topic, but I’m calling “ad verecundiam” here because of the syllogistic phrasing in the comment.
The reasoning seems to be: I’m not wrong because I’ve made inaccurate statements…I’m wrong purely for lack of being an “expert”…according to an “expert”. Conversely, he is “right”, not because he is making accurate statements, but because he’s an “expert”.
Dude…ad verecundiam. Look that one up. My guess is you could offer constructive criticism and avoid the circular reasoning stuff.
My favorite bit from his reaction is the “How dare he discuss autism!!!” part. As if it’s completely outrageous that people out there in the world might brazenly discuss topics deeply relevant to their lives.
We dare, expert friend. We dare.
Four different reactions. One underlying question.
Who gets to talk about autism?
I say all of us. Different voices, different lives, all adding to the vibrant narrative tally of the autism spectrum…I say this is a good thing.
Related posts: my uncle the beekeeper, social data and the radio metaphor, volunteering on the spectrum. And find ongoing discussions about these issues at the Invisible Strings Twitter and Facebook page.