My son, Nicholas, was featured on the cover of the major western North Carolina weekly — the Mountain Xpress — a couple of weeks ago and the cover is, without question, The Best Cover Ever. Featuring a photograph by Tim Robison and art design by Megan Kirby, it’s something to frame for Nicholas’ lifetime.
Also, and sadly this part appeals to me, if I put it in a frame I won’t read the Mountain Xpress article, in which my family and two other families are profiled, again. And Nicholas won’t be able to read it, either.
When you’re unhappy with a piece you’re featured in, it’s always disorienting. You inevitably get lots of enthusiastic response from people who care about you and who think press coverage is a kind of special honor — mixed with upset response from people who care about you and know better.
You want to respect the genuine pleasure and delight of the former without dismissing the concerns of the latter, and that’s true even when you don’t share the concerns, which in this case, I do. There was smiling appreciation for the Mountain Xpress autism piece expressed by many people we’re close to and many people we hardly know, who were very excited by my son’s 15 minutes of celebrity. There also were tempered, reticent nods of acknowledgment, essentially, and some frank dismay.
I’ll be honest: when you do media requests, you expect frequent poor outcomes. Reporters are usually very smart and very busy: they’re pumping out product, and they make mistakes and get things wrong. They just do.
You hope against hope they have good editors, but frankly the world employs fewer and lesser editors than it needs after decades of news-media budget cuts and declining public insistence upon media accuracy in an age of advocacy journalism.
So, you instead hope against hope the good done in spreading awareness outweighs the frequent distortions in messaging. And maybe it often does, but you’re rarely entirely sure.
I *am* media. I was a copy editor and reporter at a newspaper for a time, an editor in various roles (eventually becoming editor in chief) at a trade magazine for eight years, someone who was interviewed for and did interviews and articles for a variety of national publications, and a social-media strategist and content creator and frequent blogger for a book-publishing sub-imprint. I still do social media, interviews, and occasional blogging from my own very tiny corner of the universe. I understand the responsibility of media and news media. And I understand up close and personal that sometimes things go wrong even with good reporters, good editors, and good intentions.
The writer here had all good intentions. She and her husband have an autistic child younger than mine. She’s grappling with what that means, educating herself, coming to understandings, and drawing conclusions in her explorations.
That makes for a valuable journal entry or blog post — one you could look back upon years later and see where you’ve traveled, as opposed to where you’ve arrived. It’s more problematic, however — reckless even — when you are working through what it means to have an autistic child and turn that journey into a published news feature in which you’re profiling, making observations, and drawing conclusions about autism and other families.
Especially when it’s wrapped in The Best Cover Ever, with nearly 30,000 printed iterations of it staring out for a week from every street corner in Asheville and all the surrounding towns in western North Carolina. And especially when my son looked so very magical on that cover.
So: I’m not going to spend much time rebuking the article itself beyond giving just a few examples of its problems, but then I will flesh out the greater lessons those problems represent and also the meaning of some people, even in the autism community, responding positively to the piece. We hiked to High Falls at DuPont State Forest with the writer and her family as she interviewed me and Nicholas: our part of the 3,200-word piece resulted.
Here are some examples of what I find throughout the article, and I really am going to try and make this quick — I’ll stick to the intro to the piece and my family’s section, not wanting to attempt to represent the other people interviewed:
On the first sentence I read when I opened to the piece, right in the middle of it, writing about my son this way: “And while his unfailingly friendly and timid demeanor may make him seem feeble-minded, Nicholas is far from it” and then presenting a quote from me about Nicholas’ juggling prowess and determination:
I was an editor for a long, long time. My eyes went right to those words when I opened the Xpress.
I can’t quite imagine it being okay to write those words about anyone — he or she may seem feeble-minded, but. An autistic friend of ours — an adult — wrote to me that “feeble-minded” was a slur: code for the R word.
I’m going to tell you what the R word is, in the hope that it has become so uncommon and objectionable that you might not know what it represents: retarded.
We have difficulty accurately measuring or even understanding the intellectual ability of many autistics, because they don’t necessarily express or evidence that ability in ways we are used to measuring. As that same friend pointed out in the context of my reluctance to have Nicholas read the article: When Nicholas reads that he seems feeble-minded, how will he feel? How would that make *you* or anyone feel, even with a “but” thrown in? And if it wasn’t intended as a slur, why does it need a “but”?
More importantly than that, so what if he is feeble-minded, which I take to be a euphemism for stupid and slow? Why is that a bad thing?
Do we judge people’s quality and worth based on their intelligence, even setting aside that our notions of intelligence are themselves based on arbitrary and changing ideas?
On “The place he inhabits on the ASD spectrum means that Nicholas often repeats what others say, giving conversations with him the quality of a bad phone connection. He likes things to be just so: Obsessive-compulsive tendencies are often part of an ASD diagnosis, and Nicholas has certain fascinations that border on obsessions and a few phobias that defy all rational argument”:
Oh, my, as two old friends of mine are prone to saying when something takes them aback.
Regarding the bad-phone-connection line, what’s valuable here, as with the feeble-minded line, is the reminder that people think this way. That is, some of the people Nicholas engages in the world think this way, and that’s important to remember, not that we’re given plentiful opportunity to forget it.
People communicate their thoughts, truths, and stories in different ways. My friend and teacher Catherine Faherty often emphasizes that communication is always a two-way, shared responsibility. Nicholas actually communicates his preferences and thoughts a lot — and only sometimes verbally — to those who take the time to be truly present with him. And the idea that someone in the autism community would judge his communication forms as lacking or annoying and describe echolalia in this way, especially in a mainstream publication whose audience is mainly people outside the community, is disappointing.
Nicholas came home from his first sleep-away camp this summer a couple of weeks ago. Here’s what his counselor wrote to and about him: “The first time I heard about you was during training week and I really wanted to know why everyone loved you and wanted to be your friend. … You are caring, intelligent, protective, and friendly. You’re a pure, loving soul who is able to touch anyone’s heart with a simple yes or why not. You and [co-camper] Daniel are two of the sweetest boys I have ever met.”
The difference here is that there’s no negative with a “but.” That’s a 180-degree difference.
Also, the writer of the article merges what once was true with Nicholas and what is true with Nicholas, taking license that distorts the story of his life. And his OCD fears, rather than defying rational argument, have always been extremely rational: He was trampled by three dogs when he was very little, and he became afraid of (and, later, simply tentative around) dogs. He was thrown down stairs by a blond-haired boy when he was 2; he was afraid of blond-haired boys for a year. He hurt his arm in gym at elementary school; he didn’t want to go back in the gym for a couple of years.
Nicholas is the most linearly rational person I know.
On my “(sympathizing) with parents of newly diagnosed children, who often cast about wildly for quick fixes”:
The message I would rather try to impart — perhaps inelegantly and certainly often represented in articles on this blog and elsewhere — is that there’s nothing to fix. There are people to help and love, just like all people need help and love. That’s what parents of newly diagnosed children (as well as many professionals and society as a whole) need to learn. The faster they learn it, the happier and healthier their children will be, their family will be, and they will be.
The slower they learn it, the more damaged everyone will be.
And related to that in the part attributed to me toward the end of that section: therapies for autistic children (and adults) are healthy and constructive when they are geared toward supporting the individual in their happiness based on who they are, not based on normative prescriptions about what society expects or what is needed to fit in or succeed or any similar value system. (See my Top 10 List for Autism Professionals, which is also valuable reading for parents, families, and human beings in general.)
(Okay, that might have been slightly immodest.)
There’s factual sloppiness, too: For just one example, the author reports that 46 percent of autistics “rank above average intellectually, according to the CDC.” No: the statistic, found here, is 46 percent of children with an autism diagnosis have average to above average intellectual ability, according to the recent CDC monitoring report. The misreporting projects a largely Rain Man-like population that betrays the point the writer was trying to make in that section.
To be sure, and why I didn’t write this to the Mountain Xpress, the author is well-intentioned and even quite lyrical in her sometimes lovely writing. The real problem is that to write her counterpoints she makes points that are offensive and inappropriate as starting points and common assumptions.
And that reflects a much larger issue that takes us well out of the Xpress article, even as the conflict’s consequences reside in it: the critical gap in understanding — in both primary senses of the word — between two rather diverse clusters of people.
What it represents
People’s perspective about autism results in respect and value for the individual and the collective autistic community — or disrespect, disregard, and a lack of valuing autism and autistics.
In the latter cluster are many families of children newly and recently diagnosed with autism, some professionals, some autism organizations (including the largest and best known one, Autism Speaks), and, frankly, the bulk of society.
The other cluster includes most autistic adults, families of older autistic children and then adults, some professionals, increasingly some autism organizations, and smart, empathetic people in the rest of the society (not all of them, but just about all of them would be in this group if given adequate information and education).
It’s the fundamental view-of-the-world difference between autism as illness and autism as neurodiversity — autism as a valuable and, indeed, essential aspect of humanity’s wholeness and beauty, no less valuable or beautiful than any other part.
It’s a conversation and debate that occurs continually in the autism community, perhaps most visibly in the work and pronouncements of Autism Speaks and the condemnation of that viewpoint and those efforts by autistic self-advocates and community supporters. And the word “conversation” might be objected to by many who would describe it as a war — a revolutionary war for representation and self-determination and even for defending continued existence.
I won’t even try to capture the breadth of that dialogue and ongoing controversy in this post, but rather I commend to you some online blogs and sites to begin to explore (which is, at it happens, exactly what I suggested to the author of the Xpress piece) the substantive conversation: the Autistic Self-Advocacy Network (ASAN), the Autism Women’s Network, Amy Sequenzia’s Non-Speaking Autistic Speaking, Judy Endow’s Aspects of Autism Translated, Lydia Brown’s Autistic Hoya, the John Elder Robison blog, Carolyn Ogburn’s TAG: Because You’re It, and Jade McWilliams’ highly visual Astronauts Are Cool blog, to name just a few portals with a diversity of viewpoints between them.
The writer of the piece, the parent of an autistic child, regrettably and unknowingly writes from the perspective of someone who still disrespects autism and autistics. Which means, for people who hold the opposite perspective — including most autistic adults — the writer was ill-equipped to write the piece she penned for public consumption.
To wit, concluding her introduction with this dramatic quote attributed to Aleck Myers of the Autism Society of North Carolina, seemingly oblivious to what it represents and without a response or argument from those who would find it so offensive, is simply journalistic malpractice: “I think we are close to an epidemic with ASD being diagnosed as it is. The statistics suggest we should be alarmed.”
This crisis language is the alarmist — here, literally — panicked, attention-seeking, fundraising language of Cure Autism Now and then Autism Speaks, which adult autistics view as an enemy, thought of frequently as eugenicist in intent and at a minimum demeaning and destructive in words and actions. Competent journalism requires a familiarity with the subject matter and field, which in this case would have helped the writer know this statement absolutely needs a response — a rebuttal — or it simply should not have been included in the piece at all.
For my own due diligence and fairness: I haven’t contacted Dr. Myers to query him about the quote. Because a fair number of quotes in the piece are inaccurate, I won’t assume Dr. Myers, ASNC’s clinical director, actually said that. I don’t know one person at the ASNC office in Asheville, at least, who would use that language.
Conclusions, and a lot of them
It repeatedly surprises me that counselors at autism camps on average have more empathy for and understanding of autistic children than many parents of autistics do — than most do, I think.
I suppose it really shouldn’t surprise, though: counselors and staff are drawn to this work because of their empathy, understanding, kindness, passion, and love. They are people who especially embody these qualities and values. They choose the work accordingly.
Parents are, instead, chosen. We are a random sample from society. And society isn’t as empathetic and understanding as anyone would like.
So parents of newly diagnosed autistic children have the same learning curve, on average, that society as a whole needs to undergo. And that’s a big learning curve.
I’m not excusing the largest autism organizations, which don’t just fail in their primary mission of helping autistic people but in their language and fundraising efforts mislead and misdirect parents, families, and society in a way that causes injury. They could instead expedite the learning process for all in a profound and helpful way.
Ultimately, however, as parents our children are our charge and our responsibility, whether we live in empathetic or cruel societies and no matter whether we are served or challenged by effective, ineffective, or counterproductive organizational influences.
Still, this published article left me more convinced than ever about how urgently needed better education continues to be, both in general society and — largely as a consequence — among parents and families whose perspectives are so deeply informed by the terrible, damaging distortions and prejudices of contemporary society that they don’t even realize they’re there.
That parents, educators, and therapists can read prejudiced copy and either not notice it or discount it as a necessary evil for the good done in spreading “awareness” tells us how far we still need to go.
Autism advocates — that is, those aligned with (and including many) autistic adults — have criticized the autism awareness campaigns and demanded they shift instead toward a dialogue of autism acceptance. But I think that’s mistaken and even naive, colored by an inside-the-community perspective.
In fact, there continues to be extreme ignorance about autism, and autism-awareness efforts still obviously matter. They just need to be improved. Perhaps a synthesis can take place, in which autism-acceptance outreach and marketing campaigns are languaged, framed, and disseminated in ways that foster basic awareness, as well.
But autism advocates are also utterly right in their condemnation of lowest-common-denominator approaches as unacceptable, based on the idea that spreading any message about autism increases awareness and thus is beneficial. This leads to marketing based, sympathy-inducing storytelling that assumes autism as burden and curse to raise awareness and, often, money.
These marketing organizations think they’re not just doing no harm but actually doing good. But they usually are closed-minded and won’t truly listen to or consider contrary perspectives that might improve the work they do.
Anti-autism prejudice is damaging no matter the intentions, no matter how much money is raised, no matter how many views or clicks an article receives online.
Increasing that kind of prejudiced awareness doesn’t help people. It harms lives. And when it comes from a parent, again no matter how well meaning, well, I’ve come to think we sympathize with parents for far too long. Prejudiced perspectives — especially from parents — deserve nothing but condemnation and reproach because each and every child deserves unqualified love, understanding, and respect.
Autistic children aren’t damaged because they’re autistic. But they are all too often damaged by society and by family — by those charged with their care.
I’m tired of giving bad parents understanding and acceptance when they fail to be intellectually and emotionally agile enough — human enough — to give understanding and acceptance to their children. That self-indulgent narcissism, years of tears and mourning about imagined, fictitious loss, inflicts emotional abuse on the child they actually have.
We have to stop indulging this abuse, so parents much sooner grasp what they’re doing and its consequences.
Early intervention is indeed critical in autism: We need early intervention for parents.
What the article takes as a point of assumption is that autism as difference is something pejorative and something to be overcome. Anti-autism prejudice, by the way, includes the prejudice of low expectations.
What I take as a point of assumption is that difference itself is an inadequate and fairly meaningless concept: we’re all different, every human being on earth. And the labels of difference — autistic, disabled, Down’s, deaf, blind, gay, queer, transgender, black, Hispanic, Jew, Muslim, immigrant, old, woman, wheelchair, and, why not, feeble-minded — are all part of the beautiful diversity of humanity.
It’s great that Nicholas can juggle: he loves it, I love it, people enjoy seeing it in public, in school, and at camps. It’s not actually a counterclaim against feeble-mindedness, though: someone can be feeble-minded, as we measure it with all our preconceptions and prejudices and ignorance about what we don’t know, and juggle.
And someone can be feeble-minded and not juggle or do anything else that captures attention or applause. No part of any of that constitutes something to mourn. It just describes — or fails to describe adequately — people we simply ought to accept and love fully, exactly as they are.
I love Nicholas regardless of his measurable intelligence. There’s no but. I love Nicholas regardless of whether his forms of communication match mine. No but. I love Nicholas whether or not he juggles, uses utensils, can tolerate being in busy and loud public places, is toilet-trained, can self-advocate, swim, or pet dogs, can call 911 or work as an adult or go to college or drive or anything else.
There are no buts, no pejoratives, no normatives that qualify our love. Every person is every bit as wonderful and lovable and precious and sacred as every other one.
If we don’t think they are, that’s our failure, never theirs. It’s our sin.
This is what parents and families of autistic children know or learn very quickly, if their children are lucky. This is what those children learn because it’s the stuff their lives are made of, or God help them. This is what our society, our community, our educators, our news media, our priests and poets, and all of us need to learn.
And these are the soul principles by which we all need to live.
*Addendum: After I wrote and scheduled, as WordPress puts it, this piece for publication, I was forwarded an exchange between an adult autistic friend and the Xpress piece’s author about the author’s use of the term “feeble-minded.” The author explained that this is realistically how many people perceive Nicholas and other autistics and objected to the need to use “PC-language” in describing how people respond to autistics. “I am of the opinion that sometimes PC-language leads us down a slippery path where all words are rendered meaningless in an effort to not offend anyone,” she wrote.
I think I responded adequately to her notion in the piece above, but let me say: By this reasoning, you can excuse publishing — thus excusing and even affirming the holding of — any prejudiced and pejorative association with any minority group. I’m black and Jewish, so I’ll offer examples based in terrible and damaging historical stereotypes relevant to my own racial and ethnic backgrounds. Black: Person X may seem lazy or inferior or stupid, but. Jewish: Person Y may seem money-grubbing or materialistic or devious, but. No respectable contemporary publication would publish such aspersions, and no good journalist would present these prejudices in such a careless — or, perhaps, carefree —way, even though they indeed still reflect thinking prevalent among some people in our community and other communities.
Autistics and other people with disabilities deserve no lower standard of respect and decency.
Thank you for reading this post. I invite you to share the post using the social-media buttons below and also to explore this site and, in particular, other blog posts about my perspective on autism and the life of my son, Nicholas. These include:
- Top 10 List: Things to Remember When Working with Autistic Children or Other Children with Special Needs
- On Blackness and Autism, Identity and Essence
- Autism Nation: Implications for a 1-in-68 Planet
- Nicholas Thurman Jackson Hemachandra: the puzzle known as Superman
- Autism and Grief
- The Egg Chair
- Roads Not Taken: Lessons in Autism, Inclusion, and Life
- Sharing a Diagnosis of Autism
- The Autistic Spectacle
- Autism and the Human Condition: Ourselves and the Other, Ourselves as the Other, Ourselves and No Other