Stigma and Shame Are Alive and Well, Despite Autism Influencers

Who gave Emma Camp a megaphone? Her NY Times Op-Ed, “Why I Am More and More Ambivalent About My Autism Diagnosis,” is offensive and ignorant.

Photo by Aaron Burden on Unsplash

If there’s an article in the NY Times about autism, someone I love invariably forwards it to me. I’m grateful to be kept informed, but sometimes I’m offended by the drivel that passes for journalism.

The insulting Op-Ed, “Why I Am More and More Ambivalent About My Autism Diagnosis,” with it’s brightly colored and confusing image, started my blood boiling by paragraph two. I read it with increasing dismay, as quotations were put around phrases like neurodiversity advocates.

What does a phone on a couch have to do with autism?

Then the author quickly dove down a reactionary rabbit hole. Ms. Camp’s political bent is perplexing, but the point that is most essential to me, because it could perpetuate ignorance and cause damage, is her bizarre assumption that neurological diagnoses are no longer stigmatized.

“The world has much further to go in terms of acceptance, understanding, and accommodation of neurodivergence than Ms. Camp thinks; this is about so much more than ‘identity politics.’”
-S.P.

If you think stigma has been erased from autism, you are living in a dream world of extreme privilege. Parents, I’d love to hear your thoughts if you read her opinion piece. Many of the comments reassured me that I’m not alone in being baffled by her hypotheses.

My Mission is to Eradicate Shame to Create a More Inclusive World

According to Ms. Camp, my job is not only done, but the pendulum has swung so far the other direction that now autism is caché. Sadly, advocates for disability justice know that our work is far from done.

Emma Camp’s assertion is:

“Once they (neurological diagnoses) were primarily serious medical conditions, perhaps ones of which to be ashamed. Now, absent social stigma, mental health status functions as yet another category in our ever-expanding identity politics, transforming what it means to have a psychological or neurological disorder for a generation of young people…”

Stigma and shame are still very much present, and I work alongside disability rights advocates to change the views of the vast majority of the public who are ignorant about my son’s challenges, my own challenges, and by extension the challenges of all neurodivergent people and those who love them.

If you have ever listened to and comforted a parent whose child has just been diagnosed with autism, you would never say the stigma is gone.

These parents did not get the memo Emma Camp seems to think everyone got: that autism is the new intersectional badge of cool, brandished by white privileged youth as a way to feel more unique.

Photo by Rodion Kutsaiev on Unsplash

Every parent of a newly diagnosed kids that I’ve talked with grapples with terrible dread. They are not excitedly picking up a label like a new designer handbag. They have listened to what society (and doctors) have told them about developmental neurological conditions: they are life long impairments. And because we all grew up in an ableist culture, unless that parent has already done some serious work to dismantle their internalized ableism, they believe the worst thing possible has just happened.

A life-long impairment sounds almost as bad as a death sentence to parents raised in an ableist culture. Many go through the stages of grief, while piling shame on themselves for feeling any despair associated with their beloved child.

Parents of newly diagnosed kids ask me questions like:

• “Will my child ever make a friend?”

• “What will happen when I die? Who will take care of my child?”

• “If my 3 year old can’t control his frustration and is hitting me now, what will happen when they get bigger than me?”

• “The school calls me to pick up my kid every day — will I lose my job?”

I can’t answer those questions. No one can.

But I know this: the problem is not their child, but the intolerance shown to their child by the culture. Autism and other neurodivergent conditions are very hard for people, but the lack of support make them so much harder. It doesn’t have to be that way. We could actually give everyone what they need if privilege and ignorance like this was questioned and confronted, rather than sensationalized in primary colors.

“If this writer thinks that there is no longer a stigma associated with neurodiversity or autism, she is living under a rock. I’d love to live under that rock, it sounds really pleasant… It is ignorant and insulting to trivialize this.”

-Erin Bergren

Thanks to #Neurodivergent TikTok, We Are Just Now Starting to Destigmatize Autism

The neurodiversity movement, and the broader disability justice movement, are only beginning to influence mainstream stereotypes around autism. I hope that inclusivity takes up space, and runs its course until this world is safe for, and includes, all abilities.

I embrace anything that de-stigmatizes, eases parents’ fears, and infuses hope that our kids will be included, just as they are. I’m grateful to anyone who popularizes, normalizes, and even glamorizes neurodiversity, because it shines light on the strengths and de-shames the challenges faced by neurodivergent people living in what is still a firmly neurotypical world. I’m grateful for these influencers, but their work is nowhere near done.

“To be critical of an autistic individual proclaiming this label… is not reflective of realities of being autistic in a world still designed for neurotypicals.”

-Dr. Rebecca Sachs

Camp contradicts herself, making incendiary statements to get attention, while completely ignoring the fact that ableism is alive and well, and anyone pushing against it is courageous. Rather than sparking debate by making judgmental generalizations, and unlike Ms. Camp, they are helping make the world more inclusive.

“Such aestheticization flattens the difficult reality of living with a psychological or neurological disorder to little more than cutesy products and personality traits… The attraction of a flattened label is the way it provides meaning to common insecurities. Disorganization can be A.D.H.D.; social ineptitude can be autism. This approach provides quick relief from many of the anxieties central to teenage and young adult life. Am I weird? Is something wrong with me? Is this normal?­ When labeled, what makes you wince isn’t your fault, and it’s not something to be ashamed of. It’s what makes you unique.”

This implication that the label is flattened, or a quick relief from anxiety, makes me wince. It implies that autistic people should, in fact, be ashamed! No, I won’t sit by and listen to this. I’ll continue to advocate for neurodiversity and a world where everyone is at once celebrated and supported in their unique expression of humanity.

Ms. Camp may be advantaged by her autism, but I know many parents who would cry reading this statement: “Our culture needs to discard the restrictive form of identity politics that turns individuals into totems for much larger groups, and creates a bizarre impetus for otherwise privileged young adults to yearn to be disadvantaged.”

Who does she think she is, calling a movement to de-stigmatize neurological conditions a “bizarre impetus!” How does any disadvantaged group create change without coming together into larger groups to demand it? Individualism is the sickness she really suffers from, and my hope is that she sees how she is standing on the shoulders of the very intersectionality she mocks. And while she stands up there, her privilege has handed her a megaphone.

Camp writes,“The problems that many forms of identity politics seek to fix — racism, sexism, homophobia, among others — are real, pressing problems.”

Yes. That’s why you’ve gotta pass the megaphone.

And… WHAT ABOUT ABLEISM??? Does the author truly believe that ableism is not a real, pressing problem? I want to scream, but no one has handed me a megaphone...

Yet!

If someone gave you a megaphone, how would you use it? Tell me in the comments!

In the Comments of the Op-Ed, I Found the Voices That I Trust and Want to Amplify:

Bethany from Pennsylvania wrote:
“What the author doesn’t mention in her very one sided article is that there is currently and historically abuse against autistics not just socially, but within the mental health system. This thing she’s calling identity politics is a movement of advocacy in which some members of a very diverse community are working to change the system for themselves and the more vulnerable members of their community… if some individuals embrace autism as an identity (with or without a formal diagnosis) and in doing so increase the potential that we gain more respect for the humanity of autistic individuals as a society and stop abusing them within the mental health system, that is a good thing.”

Emily from Long Island wrote:
“Social media creates a sense of community and shows disabled people they’re not alone; the stigma still exists in the real world, especially if your symptoms aren’t easy to hide…
“I don’t have the luxury of detaching it from my self. It’s not all of me, but it’s part of what makes me who I am. To paraphrase, the personal becomes political when part of what you are is on the line. Anyone saying it’s not is incredibly privileged.”

Marilyn Lipes from New York wrote:
“The groups that are formed are crucial to support and protect people with autism, eating disorders, ADHD, anxiety, depression, victims of racism, sexual assault, eating disorders, cancer, multiple sclerosis, and many other mental, physical and emotional afflictions because we have limited or no access to qualified professionals.”

Tomi from Los Angeles wrote:
“I’m happy for the greater acceptance and awareness for my son, who does have many challenges. It’s hard to strike the balance between embracing his unique brain and preparing him to live in an unforgiving world.”

S.P. from the USA wrote:
“I think the author is incredibly privileged if she lives a life free of social stigma around psychological or neurological conditions. I’m happy for her. Many of the rest of us are still dealing with the challenges of living in an incredibly ableist society. One of my children, who we learned is autistic and ADHD when she was 13, routinely hears the word “autistic” thrown around as a joke at school or aimed at other students as an insult. That’s the least of it.
“The world has much further to go in terms of acceptance, understanding, and accommodation of neurodiversity and neurodivergence than Ms. Camp thinks; this is about so much more than ‘identity politics.’”

Erin Bergren from Los Angeles wrote:
“If this writer thinks that there is no longer a stigma associated with neurodiversity or autism, she is living under a rock. I’d love to live under that rock, it sounds really pleasant. In reality, being neurodiverse or having a mental illness is a daily struggle… It is ignorant and insulting to trivialize this. But once again, we see someone citing the straw man of “identity politics” when what they really want to do is justify hierarchy and marginalization. Being in a disadvantaged community does give people special rights to discuss the experiences of their community, because they have knowledge that others don’t. Unfortunately, this writer’s attitude to their community is that they should be making more of an effort to fit in, that they should try harder, that their disability is somehow their own fault, that they are burdensome to their community, that they have no right to self advocate of celebrate their differences.”

Finally, Dr. Rebecca Sachs from Brooklyn wrote:
“As a psychologist working with autistic individuals, I am disappointed the NY Times amplified this message above other autistic voices this April. Mental disorders are erroneously conflated with a developmental disability… 1 in 36 children are identified as Autistic; neurodivergence is not a Tik-Tok fad. Additionally:

1. diagnosis is costly, wait lists are long

2. access to diagnosis/appropriate mental & medical health care is limited

3. autistic children are 3x more likely to be bullied

4. mortality risk is nearly 2x greater in autistics

5. autistics have higher rates of underemployment/unemployment

6. death by suicide/suicide attempts by autistics are 3x greater for all age range 10 years+, with devastating rates of suicide attempts for autistic girls.

“To be critical of an autistic individual proclaiming this label… is not reflective of realities of being autistic in a world still designed for neurotypicals. To let others know, ‘I am autistic,’ is a show of self-respect and a recognition that the differences and disabilities should be supported and accommodated… and a call to action for increased resources and understanding, so that autistic individuals and their families may experience the least amount of suffering and the greatest opportunities for a meaningful and safe life.”

“If some individuals embrace autism as an identity… and in doing so increase the potential that we gain more respect for the humanity of autistic individuals… and stop abusing them within the mental health system, that is a good thing.”

-Bethany

Thank you to all the commenters who rekindled my faith in humanity after reading this ignorant and unfounded opinion piece. NY Times, however, I am disappointed that you handed Emma Camp your megaphone.

Parents, what do you think after reading the Op-Ed? I’d love to read your comments.

Originally published in A Parent Is Born under the title:
Why Your Ambivalence About Your Autism Diagnosis Exposes Your Ignorance.