On an April 26 NewsHour segment, Robert MacNeil fielded several viewer-submitted questions regarding his Autism Now series. Among other things, Mr. MacNeil was asked why he had not made visible the lives of autistic adults all along the autism spectrum, and why he had not invited autistic people to share our experiences and our concerns.
His answers were, in a word, disgraceful.
In the entire six-part series, Mr. MacNeil talked with only one autistic person. He asked Zach Hamrick, a young man with autism, about his job. Here is the exchange, in its entirety:
Robert MacNeil: Almost finished?
Zach Hamrick: Yes.
Robert MacNeil: Do you like the job?
Zach Hamrick: Yes.
Robert MacNeil: Do you find it easy, or is it hard?
Zach Hamrick: Yes.
Needless to say, asking an autistic person basic questions that require one-word answers, for a total of ten seconds, on a program that extends over six nights, does not even begin to address the nature of our lives. And so, I was very interested in seeing how Mr. MacNeil would handle questions about having excluded us from the program.
The interchange on the NewsHour segment took place between Mr. MacNeil and correspondent Hari Sreenivasan, with Mr. Sreenivasan forwarding the questions, and Mr. MacNeil supplying the answers. Two particular sets of questions caught my attention.
First, Mr. Sreenivasan asks, “[H]ow did you choose the stories that you did? And what else do you wish you could have done?”
Mr. MacNeil replies, “We didn’t talk about adults living now with autism, which is a very interesting story, and what their lives are, how they work, where they live, what kind of support they need.”
He considers our lives “a very interesting story” — an outsider’s perspective, par excellence. It’s as though we are a fascinating anthropological research project, rather than people, with basic human needs, in the here and now.
He continues, “We did concentrate on those about to become adults. And if anybody is interested in this and wants to read the transcript of the interview with Peter Gerhardt of the McCarton School in New York who is an expert on this, it’s really fascinating on what he envisions the lives of adults can be and should be.”
Yes, let’s talk to a non-autistic person who is an “expert” on what our lives can and should be, rather than to autistic people — who not only know how our lives can and should be, but who also know how they actually are. Why Mr. MacNeil feels the constant need to sidestep us in this way, to talk to other people about us, and to direct people to speak with those who “envision” our lives, rather than to those of us who actually live them, is beyond my capacity to fully understand. For a journalist whose only aim should be to uncover the truth, continually ignoring the primary source of that truth violates all journalistic standards, as well as basic common sense.
Rest assured, though, that things only go downhill from here. In forwarding another concern from a viewer, Mr. Sreenivasan says: “There’s a comment from John Horton, who writes in and says: ‘I think an adult with autism should have been included on the roundtable. They’re talking about them but not to them.’”
Mr. MacNeil’s response is so appalling, so illogical, and so dismissive that it will take me awhile to untangle all its implications.
He begins by saying, “Well, perhaps he’s right.”
Perhaps? It’s as though the question of interviewing the subjects of his series had never occurred to him before.
And he continues, “We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.
But they speak for themselves. And we didn’t see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.”
Oh, God in heaven, where to begin?
Let’s begin by discussing the urgencies that attend the lives of autistic adults, shall we? Unemployment rates for autistic adults are skyrocketing, and services for developmentally adults are being ruthlessly cut. In a 2009 study in the UK, the National Autistic Society found that “79 percent of adults with autism who receive government assistance would like to work. But limited resources and lack of understanding mean that few have jobs and many have trouble even getting government assistance, leaving them ‘consigned to poverty’.” The picture in the US is equally bleak.
Moreover, autistic adults are especially vulnerable to becoming victims of crime. According to the Department of Justice, people with developmental disabilities, including autism, have a four to ten times higher risk of becoming crime victims and are twice as likely to be sexually abused as people without those disabilities.
Is it any wonder that the rates of clinical depression, anxiety disorders, and suicide of autistic people are higher than those of the general population?
Is all that urgent enough for you, Mr. MacNeil?
As for the idea that autistic adults who have “busy and productive lives in the world” should be excluded from a discussion about autism because “they can speak for themselves” — well, it’s absurd on the face of it. Why should being able to attain independence — which, by the way, is what every autism parent wishes for his or her child — disqualify us from speaking about our insights, our experiences, our concerns, and our views in order to improve the public’s understanding of the lives of autistic people? After all, Mr. MacNeil gave non-autistic people with “busy and productive lives in the world” more than their fair share of airtime on his program. Their level of functioning did not enter into his decision about whether to include them. Why should it affect his decision about whether to include us?
And why, oh why, should our ability to speak for ourselves be a reason not to allow us to speak at all? How does that improve the lives of autistic children in the here and now? How does it improve their prospects for the future? If they attain some measure of fulfillment and independence in adulthood, will they, too, be excluded from the conversation?
The logic of Mr. MacNeil’s statements works along familiar and divisive lines: If you can speak for yourself, you are not autistic enough to speak for other autistics. But if you cannot speak for yourself in any kind of conventional way, we will not allow other autistic people to speak about you, to express concern for you, to enter into the discussion about how to support you, or to share their reflections about what your experience of life might be like. We will only allow non-autistic people those privileges.
If “high-functioning” autistic people are considered ill-equipped to understand the experience of others on the spectrum, then on what logical or ethical basis can Mr. MacNeil, who is not autistic at all, justify speaking for any of us? If Mr. MacNeil has the right to speak about autistic people, then surely, we do, too.
Of course, I categorically reject the idea that only “high-functioning” adults can speak for themselves. There are many people, all along the spectrum, who can speak for themselves in a myriad of ways. Consider Carly Fleishmann, a nonverbal teenager diagnosed with classic autism and apraxia, who has learned to type over the past two years, and now attends honors classes in a mainstream high school. She is a funny, insightful, passionate young woman who travels the country helping people understand the nature of autism.
Or learn about Eric Duquette. When he was a child, his parents were told that he would end up in an institution. Last year, he was the salutatorian of his high school class, after having been accepted into every college to which he applied.
Or listen to the words of Jeremy Sicile-Kira, a severely autistic young man who graduated from high school last year and gave a speech, using a voice synthesizer, at his graduation ceremony. He, too, is going to college.
So, Mr. MacNeil, if you think that those of us who can speak are too “high-functioning” to talk about the lives of people diagnosed with classic autism, please go ahead and talk with them yourself.
You will find us describing the experience of autism in much the same terms. And you would do well to listen. After all, anyone who wants to create an “authoritative” series on autism needs to portray the lives of people all along the deep, wide, and diverse autism spectrum.
We will continue to expect nothing less.
© 2011 by Rachel Cohen-Rottenberg
I couldn’t agree more, Rachel. It blows my mind how the autism community at-large so willingly discredits what autistic adults have to say. As the mother of a 6-yr-old son with autism, I feel the experiences of autistic adults are vitally important for us to hear. If I am working with my son to make him as independent and self-advocating as he can be, why wouldn’t I want to hear from those who have lived the experience that he is living now? I just can’t wrap my mind around the idea that those who can speak for themselves don’t matter.
I also get very annoyed when people assume that those who can speak are “not autistic enough” to really say anything about autism. I actually had a falling out with a fellow autism mom/dad about this. They had issue with my anti-cure/pro-acceptance stance and called me an idiot, saying I didn’t know what I was talking about because my son is verbal and “is as close to normal as they come”. Yeah. Needless to say, I went off. My son started out barely verbal and has only gotten to where he is now through hard work…believe me, he’s worked VERY hard to communicate with others, along with dealing with major anxiety and sensory difficulties. How insulting the determine/assume that, because a person can speak for theirself, they have not or do not deal with difficulties on a regular basis and therefore have nothing of value to say. When will the autism community at-large figure out that ALL voices have value and need to be heard? And not just the voices of the non-autistic…
It’s so terribly upsetting to hear people look at how we present ourselves, forget about all the hard work it took to get there, and ignore all the effort it takes to stay there. In general, people just don’t understand how hard we autistic people work to navigate the sensory and emotional worlds. It’s extremely hard work and, for the most part, the world is completely oblivious to it. So people look at your son, don’t see all that work going on below the surface, don’t understand how much strength and internal discipline it takes to maintain that level of functioning, and dismiss his experience out of hand.
And they say that autistic people have difficulty with perspective taking? I can see things from so many perspectives that I sometimes forget which one is actually my own!
“In general, people just don’t understand how hard we autistic people work to navigate the sensory and emotional worlds. It’s extremely hard work and, for the most part, the world is completely oblivious to it. So people look at your son, don’t see all that work going on below the surface, don’t understand how much strength and internal discipline it takes to maintain that level of functioning”
Hear, hear!
Rachel, like you, I only discovered that I was autistic in mid-life. I self-diagnosed in 2008, at the age of 45, and had that diagnosis confirmed by a psychologist (Ph.D., Clinical Psychology) in 2009. I have learned a lot of compensatory behaviors over my 4+ decades, and I can “pass” pretty well, in brief, manageable, and structured social situations. One-on-one, I’m pretty damn “good”. Of course, for most of the time I was learning how to blend, I didn’t know that that’s what I was doing, but I do know that I studied people, and studied them hard. I just never knew that that was unusual!
In my diary, when I was 13–and the bullying began to be savage–I wrote instructions to myself to “watch the popular girls”, what they said, how they acted. It got to the point that I was unconsciously mirroring a longtime friend of mine, who was pretty popular but, to her credit, didn’t abandon me. I would copy her every gesture, but didn’t realize I was doing it until she pointed it out.
Over the years, I have built up a lot of scripts and mental subroutines for social situations; some are so old that they can run almost “automatically” in the background. Of course, I am still vulnerable to overload when a situation veers away from one of my subroutines, as it often will. What I’m trying to say is, it’s taken a lot of cognitive effort to learn a great degree of fluency in Widely-Accepted, Conventional Social Language, but I’ll never “speak” it like a native, and the more time someone spends with me, the more obvious it is. I always used to wonder why I would often make excellent first impressions, but crappy second or third ones, when, as far as I could see, I was doing nothing different.
The point of this whole rambling comment is this: because I am somewhat fluent, and can pass for “normal”, most people are shocked when I tell them I’m autistic. I have found the Paradox of the Duck to be a very useful analogy: in a given social situation, especially if I’m talking to someone one-on-one, I might seem to be gliding along, and succeeding with very little effort, but under the surface, there’s always a furious amount of paddling going on!
I guess this is…paraducks-ical.
(And now I have made a bad pun, and am especially happy!)
Some of my best friends make bad puns.
I was just listening to the audio from that interview and, of course, I had to click here! What I find about the whole “Robert McNeil Experience” is that this is simply a grandpa who really loves his grandson in his own way, and wants to talk about his grandson and his personal problems in a way that he can congratulate himself for adding a great public service to the community. Unfortunately, we are left with a pretty neat little package by a grandpa who has no in depth understanding of autism who’s done a year of “research” and turned in his “paper”. Further unfortunate is that people suck his stuff up like a sponge and feel good listening to it.
I feel the results leave a skewed and inaccurate picture. But here is my perspective. I was a broadcast journalism major in college. Many people who make a career of it, are not bright. They are either good looking or have “the voice”. The fact that they are good-looking or have “the voice” gives credence to their reporting. It rarely has to do with talent or knowledge (certainly not expertise). And the people usually making those decisions about who should do these reports aren’t any smarter. So, I’m sure in his own mind, he has done good.
Robert McNeil has “the voice”. He lacks the knowledge. You have the knowledge. Wouldn’t it be fun to do your own piece and submit it to PBS? Now, there would be a series I’d watch!!
That would be wonderful! But since I can express myself, I don’t think they’d listen. Of course, if I couldn’t express myself, they wouldn’t have to listen. In either case, they’d just get to keep talking — which is exactly what they’ve done.
It would be nice if they modeled some good social skills and gave someone else a turn.
Well done, Rachel. I’m all talked out after doing battle at Countering, but you know where I stand anyway.
Thanks for always fighting the good fight.
Yup. We’ve got to remember when the battle is pointless, Laura, at least in regards to direct engagement with particular individuals. I think they want to sap our time, effort, and energy.
Rachel, excellent post and points.
Thanks, Kim. And you are so right: It’s so important to pick one’s battles wisely, and to disengage when necessary. Sometimes, it’s just not possible to have a meeting of minds.
Thanks, Laura. You did a great job over at Countering today!
I’m done reading, and feel like the top of my head is going to pop off!
First, MacNeil’s comments and cluelessness are pretty much what I expected, but completely illogical, unsupportable and absurd. Your points encapsulate several conversations I’ve had the last two weeks with my partner, about all these points (and mostly because I watched the entire series). I mean! AGH! Seriously! What?! (there goes my head).
I’ve rarely felt so incensed, either before my diagnosis, or before I knew what was “wrong” with me. I do plan on forwarding this post to a few people who maybe wonder what all my fuss is about.
Thanks for saying what I find so difficult to articulate.
So sorry about your head, Ben. It’s a good thing you keep some spares around the house, eh?
I may be able to be more articulate later, but like Laura, I attempted to do battle over at Countering today, so for now all I can say about MacNeil’s statement is, “the irony, it hurts.”
You all did a great job at Kim’s blog today. It’s great to see people articulating the issues so clearly. Thank you!
“After all, anyone who wants to create an “authoritative” series on autism needs to portray the lives of people all along the deep, wide, and diverse autism spectrum.
We will continue to expect nothing less.”
Very well-stated, Rachel, as usual–the whole thing, but I especially like your closer.
Y’know, it’s all the grandiose descriptors tossed out by MacNeil and PBS that make this lopsided coverage *really* irritating: “authoritative”, “comprehensive”, “the story of Autism”. Aaarghh! I mean…the *story* of Autism?! The blurb put out by PBS, just before the series aired, was titled, “MacNeil Returns to PBS to Tell Story of Autism”. It just seems laughable to me, like something a bombastic, arrogant stereotype of a newsman would say in a satire.
Substitute any other word for “autism”, and would any news outlet, any network, dare to run with the phrase to publicize a series? “The Story of Homosexuality”. “The Story of Human Rights.” The Story of Feminism”. Even, (though I hate to use the example of a disease) “The Story of Cancer”. It seems like any network exec would look at that and say, “Really? You’re doing the “story” of this in six hours? I don’t think so! We can’t use that–we’ll look ridiculous!” And why “story”, anyway? Perhaps, MacNeil was telling us from the outset that this would be mainly fiction!
Now, you’ll have to excuse me. I had a salad for dinner. I’m going to go write about it, and title my piece, “The Story of Food”.
Rina, there are no foods other than salad. Salad vegetables are hard to grow. Most of the other edible commodities are part of a kind of nutridiversity community, and they practically grow themselves.
If the series had been titled, “Autism: One Family’s Journey,” I’d still take serious issue with the reporter’s dehumanizing attitudes regarding our capacity for empathy, and with his failure to include autistic voices, and with the whole “vaccines cause autism” trope, but at least the whole series wouldn’t be masquerading as some sort of objective, authoritative masterpiece.
YES.
I wouldn’t have necessarily liked the report either had it been presented as one person’s story, but I would’ve at least been able to accept it as one person’s story. But to call this “the most comprehensive” coverage of autism to have been aired in years is…just laughable.
Laughable is definitely one word for it, among many.
Another great post and analysis, Rachel. I guess that “don’t ask, don’t tell” is still very operational in our world. I truly enjoy your heroic “telling” as it really is.
Thank you, Phil, for all your support.
I try to stay out of all of all of the forums, I just don’t have time. But I do read and pass things on from time to time. I was in shock after seeing his comments yesterday (I couldn’t get the vid to display so just read the transcript)… this is a very well written explanation of the inanity in his response. I’ll be passing this one on.
Thank you, Tam. And it’s good to see you here. I recognize your name from Laura’s blog.
Also interesting how if you’re able to speak/type and participate in a neurodiversity it is automatically assumed that you’re living a full and productive high-functioning life.
Uhm what? I can type and speak and pretend at normalcy for long enough to partake in a few community things. But a job? Nope. An education? I don’t even have that. A future of economic independence? That doesn’t look too good either, but I guess, since I can speak I have no problems at all according to MacNeil. Good to know.
It’s pretty clear that Mr. MacNeil is woefully uninformed about the lives of autistic people once they age out of the educational system. He can’t even begin to acknowledge the struggles we have to go through to attain some measure of fulfillment in this life.
I really like your points about the non inclusion of adults with autism in media coverage of autism.
I’d like to add a few thoughts. I wonder if the real reasons for non inclusion lie in power dynamics. Maybe adult Autists are excluded because they force NT society to take a good hard look at some things that NT society would prefer not to talk about.
There is currently an overemphasis on “team” and “collaboration” that didn’t exist 25 years ago to the degree that it does today. 25 years ago, we didn’t have the layoffs that we have now. We had a lot more job protection. The emphasis was on professionalism. We were just beginning a transition from a manufacturing based economy (focused on objects; requiring hard skills) to a service based one (focused on people; requiring soft skills). Nicholas Kristoff has written a good article in the NYT about the Rise of the Composure Class detailing how it is the people with good social skills that rise to wealth; noticeably lacking are the people who are creative or who know how to make things.
In the old days, there was a place for the guy with special interests especially if that special interest jived with a corporate product . At some point the laws of physics have to be obeyed otherwise a product could not come into being or severe safety issues would arise (think o rings on a NASA shuttle; or blow out preventers on a BP oil rig). Someone with a special interest in those technical details would fit right in. These days with the offshoring of manufacturing, those nerdy guys would be the first to go. Work that can be done quietly without much people contact is the first to go overseas. People with the fewest social connections in a corporation are the first to be laid off. People who don’t fit the corporate norm get the boot first. Most corporations do not have any real appeals process for a layoff. I haven’t heard of EEOC stopping any corporate initiative in a mass scale in a very long while.
We are concerned with the rise of China and the fact that our economy is in the doldrums and we need a major restructuring of our economy/society. How can we really address these if we are incentivized on so many levels to avoid creating things or being honest? Our incentives are rewarding those skilled in group
dynamics so we end up with a society high in self esteem and low in achievement (note our international standings in measures relating to health, education, and welfare). Surely there is some merit in balance.
If we start to look at the issues around adult Autists, we have to confront social issues surrounding bullying, hostile work force, the lack of an appeals process limiting managerial discretion and the lack of workplace rules. At will employment costs adult Autists dearly. It is the driver for a lot of bullying as groups look for the next target for the next layoff.
Even socially, adult Autists force NTs to take a good look at themselves. If we are not to rely on government support, but instead rely on family values, it sparks a good discussion as to what those family values ought to be and what will happen to families who don’t live up to those values. Just because someone is not likable in the family, is that a good reason to abandon them when they are old and/or sick? Abandoning people is not without cost as there are spillover effects that get picked up by greater society.
I think there are reasons to exclude adult Autists from their medical/psychological treatment. They will be telling you six ways to Sunday why that particular treatment could be foolish/harmful chemical experiment, psychologically detrimental, or a complete waste of time and money. Who gets to decide this? If autism is only defined as a childhood affliction or only the most severe cases looked at, no adult autism advocate need apply. If in autism, as many believe to be true, there is a unique interplay between genes, the environment, the body and the mind, medicine will need to be reconceptualized in an integral fashion and not as the current walled garden of specialties. I wonder if really the next step in autism needs to be a center developed by and staffed by Autists. This multidisciplinary center could do the research for autism, evaluate treatment options for those who are interested in cures or just symptom relief, design and promote workplace models for corporate and educational institutions, Mobilize for legislation, educate
and expand the consciousness of NTs on the needs of Autists, examine the implications of autism for developing new products that serve all people betterr (think universal design).
I think PBS missed the start of a beautiful friendship. Imagine what a TV series that focused on these topics would bring.
We are talking about a revolution.
Traveller, I think you’re exactly right or very close to it. We can tend to be both justice- and logic-obsessed. When those things run up against societal convenience, a lot of people just don’t want to hear it or have to face it.
Also, I think a lot of the denial that people engage in concerning the real difficulties faced by others comes from fear of what could befall them. A lot of people can’t stand to face the fact that their lives are as good as they are by luck or happenstance and not entirely by their own virtue and “hard work.” It allows them to blame the more vulnerable for their own position and congratulate themselves instead of taking a hard look at how our society treats people, or just how much at the mercy of fate we all are.
chavisory, I think you’re right: A lot of the denial about the lives of disabled people has its roots in fear. We represent the fact that life is a fragile and messy thing, and that there are no guarantees for anyone.
Maybe I should submit this to PBS?
Absolutely. It’s important that they hear as many points of view as possible.
Traveller, I’ve spent much time thinking about a lot of the same issues you address. I’m distressed by the current popularity of team-playerness in the workplace and in social circles.
It’s not that I can’t see advantages to cooperation and team dynamics, just that there seems to be no other option to BE any more.
If you have any reading on these subjects you could forward to me, I’d love to see them, you can get to my site through clicking on my name (I think)
This man makes me want to throw up. The whole thing makes me want to throw up.
You have articulated very well what is wrong with the program. I am mortified at the lack of regard for someone other than himself or a voice other than his own.
Thank you Rachel for your wisdom and insight.
Thank you, Lizbeth. The more parents who speak up about these kinds of issues, the better. So many of us, autistic and non-autistic, are looking to make the world a better place for adults and children all along the spectrum. To do so, it’s vitally important to create a counterpoint to all the polarizing voices out there. I’m very glad that you post here and speak your mind!
Thank you for this post, I’ll try to rspond to some comments, but before that, I have to sleep, and this subject makes me so angry and sad.
Oh and to add to the list of autistics people who have said very important things while they would not always have been called “high functioning” (I hate functioning labels so much!) if I remember well Jim Sinclair didn’t talk before being 12 years old, and there are also Amanda baggs, Sue Rubin, Cal Montgomery ( http://www.raggededgemagazine.com/reviews/ckmontrubin0605.html ) oh and some others ( http://www.autistics.org/library/tito-can.html )
Well, The blogging against disablism day is coming (http://blobolobolob.blogspot.com/2011/04/blogging-against-disablism-day-will-be.html) and at least Mr MacNeil gave us a great example of what disableism looks like.
Angry and sad pretty much describes my state of mind as well. It takes me awhile to recover from these kinds of things.
Yeah, and the number of non-Asperger’s people they could have talked to would have filled more than one segment, so they really have no excuse at all for the omission.
Oh and I forgot to mention Larry Bissonnette!
I mean in my list of autistics who speaks for themselves but couldn’t honestly be counted as having Asperger’s syndrom
There are so many non-Asperger’s autistics that Mr. MacNeil could have spoken to, and Larry Bissonnette would have been an ideal choice, given that he and Tracy Thresher have been traveling the world to change hearts and minds about disability.
Another missed opportunity. It’s really unbelievable, isn’t it?
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