Dear Mr. MacNeil,
It has come to my attention that you are spreading dehumanizing stereotypes about us. In an interview to promote your series, Autism Now (formerly Autism Today), you said the following about autism:
“It delays the most — delays or impairs for life — the most human thing we have, which is our ability to look into each others eyes and feel that other person’s existence and what might be going on in their mind, and to empathize with them. That is denied — largely denied — to children with autism.”
I remember you from the MacNeil-Lehrer News Hour. You always seemed to be an intelligent, nuanced, thoughtful human being. But then again, because I’m autistic, I must have been incapable of understanding what was going on in your mind all those years. Largely because of your statement regarding my supposed impairments in this area, I am beginning to doubt my previous judgment about you.
Your thinking about autism is anything but intelligent, nuanced, or thoughtful. It is based on the most pernicious misinformation and stereotypes our culture has to offer about the lives, hearts, and experiences of autistic people. I have been autistic for every moment of my 52 years on this earth and, believe me, I feel the existence of other people so acutely that I have to spend a good portion of my time alone. I walk into a room, and I feel the emotions of everyone there. My empathy is off the charts. And I am very well-skilled at figuring out all the possibilities for what might be going on in the mind of another person.
If I were less than fully capable of feeling another person’s existence, understanding what might be happening in another person’s mind, or empathizing with another human soul, I would not have a wonderful marriage to a loving, gentle, intelligent neurotypical man. Nor would I have a beautiful 18-year-old neurotypical daughter who tells me that I am the best mom she could ever ask for. How many teenagers say that about their parents? You don’t get there by failing to empathize with your child.
But don’t just take it from me. Ask any autistic person, on any portion of the spectrum, about the intensity with which he or she experiences other human beings, and you will hear much the same story.
What’s that? You didn’t interview any autistic people for your series?
What?
Okay, let me get this straight: You are doing a series on a disability without ever having talked to anyone who actually has that disability.
I’m sorry, but has something changed in the journalistic profession? If you did a series on understanding people who use wheelchairs, would you talk only to their parents? To their doctors? To researchers? Or would you actually talk to the people using the wheelchairs so as to, you know, do a halfway decent job of helping your viewers understand their lives and experiences?
I don’t know. Maybe you wouldn’t. Maybe you think that disabled people have nothing to say. You clearly feel that way about autistic people.
But why? Well, I suppose that if you’ve already decided that we suffer an impairment in “the most human thing we have” (and “we” appears to refer only to non-autistic people since, clearly, actual autistic people wouldn’t actually be reading anything you have to say, much less understanding it or having feelings about it), the whole idea of talking to us kind of goes out the window, doesn’t it? I mean, who wants to talk to someone whose humanity is sub-par?
Are you even aware that many of us can speak? Yes, we can. We speak using our vocal chords, our computers, our body language, our affection, and our basic humanity.
But clearly, it’s never occurred to you to listen.
If you don’t want to hear us, if you want to continue living in utter ignorance of our thoughts and our lives, that is your right, but please, consider the following: What kind of a world are you creating for your autistic grandson? Do you want him to live in a world in which no one listens to him? In which people consider his humanity to be less than theirs? In which people believe that he has no feelings, no empathy, no understanding of others? In which people don’t even bother to find a way to communicate with him, because it just doesn’t seem worth it?
What impact will the attitudes betrayed by your words have upon his happiness? Upon his ability to receive appropriate medical care? Upon his ability to make friends, to feel safe, and to develop self-respect? Will his civil and human rights be protected? Will he be treated with kindness?
Think about the world that you are helping to create and perpetuate. And believe me when I say that I know that world well, because I’ve lived in it for over half a century.
From where I sit, anyone who can’t treat another human being — any human being — as though that person has something to say and a right to be heard is not living up to his or her humanity.
Look at us. Listen to us. Feel our existence. Think about what might be going on in our hearts and minds. And for God’s sake, empathize with us.
You’ll be building a better world for everyone.
Sincerely yours,
Rachel Cohen-Rottenberg
© 2011 by Rachel Cohen-Rottenberg
Well said!
Thanks, Danielle. I left a short comment on the site regarding the lack of autistic voices in their reporting, and mentioning our innate capacity for empathy, and lo and behold, they published it unedited. A couple of hours later, the mom of a six-year-old autistic girl responded to my comment, saying that she agreed and that the whole Theory of Mind argument is bunk. So good to see!
Yeah, I saw her comment. It was good to see. I watched a 15 minute segment that someone else posted and it was sad to hear what the sister had to say. Granted it is just a 15 minute segment into her life but, BALANCE is what is soooooo lacking in these clips and I think the show in it’s entirety is just going to be more of the same.
If this series were showing on a commercial network, I’d assume that the lack of balance had to do with creating controversy to sell more toilet paper and pharmaceuticals. But Autism Now is on PBS. I can’t even being to fathom why they felt it necessary to dispense with balanced reporting.
You’d almost think Fox News produced this. They’re always so Fair. Balanced.
He seems truly well-intentioned, but like he needs more education on this subject before he needs to be making a TV series about it.
Well done as always, Rachel.
One of the most upsetting things about the interview is that the series is referred to as “authoritative.” Someone needs to let the people at PBS know that the word “authoritative” does not mean “We talked to the accepted authorities on the subject and left out the people who understand the condition from the inside out.” So very frustrating.
With that quote, MacNeil seems to be making the very large assumption that empathy can only be expressed one way (and that way has to include eye contact).
There are LOTS of reasons someone might not engage in what mainstream Western culture calls “appropriate” eye contact – autism spectrum, blindness, shyness, background in a culture where it’s considered rude…..
Just because someone doesn’t show empathy the way others might expect doesn’t meant they don’t have it, and problems reading nonverbal cues doesn’t translate to “having no empathy” or not caring for others. I hope, for the sake of MacNeil’s grandson, that MacNeil figures this out ASAP.
I agree on all points, Allie. Well said.
Looking people in the eye is overrated. People who have been beaten also tend not to look people in the eye. Does that mean they’re not human? And yes, my empathy is through the roof as well. It took many years for me to figure out that I was feeling the emotions of others as if they were my own and found the ability to separate the two. When I observe someone else being physically hurt, I even experience physical discomfort and pain myself.
And as for not being able to pick up non-verbal cues, I pick up plenty. It’s not the face, since figured out a long time ago that I don’t have that ability. I learned to read situations and a person’s actions. It’s like someone who is blind developing radar-like hearing and using that to navigate. I think it’s a little more accurate. Someone might seem sincere but really be intending to manipulate. Most people just hear the sincerity, but I can tell it’s just a tactic to get something. It’s called *adapting*. That makes us more human than any amount of uncomfortable eye contact ever could!
Agreed on all points, Joy. You’ve described my experiences to the letter!
Absolutely right on target, Rachel. No person would lend any credibility to an article about the finest wines if the author never imbibed a glass. Write a book about the process of grief without ever suffering a loss? Your outrage is so justifiable and I hope the man has the ears to hear! Good intentions are never an excuse for stupidity!
A few months back, I wrote “Unless one’s ability to navigate the world has been severely restricted, being ignorant is no excuse for being ignorant.” I actually wrote it about Sarah Palin, but it applies equally here. Very sad, indeed.
Thank you.
Your letter contains just the right level of outrage to satisfy me, without ever losing your cool, and you hit exactly the right points. I know you’ve been busy, so I know that this must have bugged you as much as me for you to have taken the time to write this up.
I have the special on PBS recording next week, since I’d like to be able to give a fair a balanced assessment of it, and I plan to write PBS, MacNeil and anybody else relevant and let them know how I felt about it.
Also, I’d like to remind everyone that as an autistic person, I cannot know what someone is thinking, or feeling, this is true. However, it’s also true for every single person who ever existed, barring some special psychic powers. Nobody can feel what another person is actually feeling, or KNOW what they are thinking. It’s just that, for various reasons, including sensory overload, my guesses aren’t as accurate as the average NT’s guesses about the state of another human being’s mind or emotional state. On the upside, maybe I’m not as lonely inside my own head as the average NT, either
Ben
I’m glad to know you’ll be speaking your mind to the people at PBS. Please consider leaving a comment at the site of the interview as well.
And whilst you’re reading, Mr MacNeil, please don’t dismiss what Rachel has written by saying “Well, it’s all very well for her, but I’m talking about people who are at the severe end of the spectrum” because that’s where my son is and I agree with every word Rachel says here.
Thank you, bbsmum! As usual, you rock.
Thank you!!! I am so grateful to you for posting this now. I had just learned of this, via Facebook, and I am outraged–and saddened, and wearied. I just want to cry, “PBS? Really? You, too?!” I came here in the hopes that you would comment on it and–gah! I’m so grateful–you did! You know how I value your insightfulness, expressiveness, and overall smarts!!!
I shared the link to the ASAN press release on Facebook, and poured out my feelings in a status update. However, I have a small number of Facebook friends, so few people will see it. Here is what I wrote:
Oh, this is disturbing. Robert MacNeil is hosting a PBS series on autism, but it seems that this series is only going to perpetuate harmful stereotypes. Everywhere, throughout the media, in most popular opinion…the stigma goes deep, the dehumanization goes deep. Why are autistic people considered the *least* reliable sources when it comes to their own condition? Why is their experience and perspective seen as irrelevant while parents and doctors are consulted instead? [I then quoted two paragraphs from the ASAN press release]
It is my fervent hope and–in my more optimistic moments–my belief, that in 20 years, attitudes toward autism will have evolved to the same point where attitudes toward homosexuality are today. People will look back in horror and disbelief… on the dark ages when mainstream media and supposed experts characterized this different way of being as a disease, looked on it as something shameful and tragic, to be cured, if possible, pitied, if not; when seemingly reputable sources regularly implied, or stated outright, that the members of this group were untrustworthy, to be viewed with suspicion, where fictional representations almost always relied on a lower common denominator of extreme negative stereotypes.
Yes, this affects me, in many ways (especially in employment) but that’s really not why I’m outraged. It affects me less than it affects many other people whom I know personally, and a host of other people with whom I feel kinship. Mostly, though it is *WRONG* in every sense of the word–factually wrong, morally wrong, unfair, and damaging. I am now in a position to *know* this, and I can’t be quiet about it.
So well said, Rina — every word.
Thanks Rachel! I don’t live in the USA, but your words resonate so well – the irony in this entire ‘movement’ of interest in Autism (worldwide) is that most of what is being said comes from non-autistic people. I recently attended a morning session held in my country on the World Autism Day (2 April). It was an excruciating event – crowded and noisy (I expected), and the school it was held in obviously was planned and designed *without* any care for the sensory sensitivities of autistic people, yet, it was a school for autistic children. During the forum, I asked the panel of ‘experts’ (professors and doctors working variously in the field of autism – curriculum planning, teacher training, parent support, health services and counseling for autistic children etc) whether they had ever consulted with adults with autism. The answer was negative, of course. The were clearly stunned that someone had even suggested that, and even more stunned when I revealed, in front of a few hundred people, that I am autistic, I am a researcher with a Master of Philosophy degree and am working towards a Ph.D in the area of autism and the creative process. What? Are you asking about services and facilities for autistic adults? Oh yes, we should look into that. They couldn’t believe their ears when I said, NO, I mean, invite autistic adults to advise YOU GUYS, that you guys should be consulting us instead of going along your merry way telling the world what we need without even bothering to ask us! It is an area which needs to be addressed, indeed. We need to stand up, stand out there, and be counted. I am glad you are doing exactly this! Thanks, again for your wonderful posts!
Well done, spunkykitty. Another fierce voice for awareness, justice, and common sense! You go, girl!
You know, I’m still feeling so new to this all. My son is almost 5 and we received his diagnosis about a year ago now. I feel like much of the information I find is full of this repeatedly recounting of a lack of empathy, lack of understanding how others feel. I am not finding that this describes my son at all. I’ve been trying to fight it as though it is a true statement from which my son simply is excepted. But you and the commenters here have opened my eyes (very wide) this morning to reality. I feel silly but enlightened because this is a fruitless endeavor on my part to try and exempt my son from something that doesn’t exist. My son has always made eye contact with me and knows what I’m feeling and what others are feeling. Apparently, this is true for everyone on the spectrum. It’s hard to admit falling into this but I thought I needed to say it anyway. Thank you for sending this powerful letter. Even some of us with autism in the house need these words.
Karen, don’t feel silly at all. We’ve all been through this. When I was first diagnosed, I took the words of the experts, tried applying them to myself, and got really confused about whether I was who I thought I was, and whether I could actually do what I’d always thought I could do. It took awhile to realize that the empathy problem was actually on the part of the doctors and researchers, who do a huge number of badly designed tests because they lack the ability to empathize with how we feel and see the world. I can feel what others feel in my own body — and when I can’t intuit what has led them to their actions, I fall back on mindful observation and analysis. I’ve never had to design a test or fund a research study to understand people with neurologies different from my own.
Maaaybe what autists lack is the usual amount of hubris?
Yes, it’s all part of our triad of impairments:
1) Failure to make assumptions based on one’s own limited and subjective point of view.
2) Inability to pretend that others think as we do.
3) Impairments in hubris levels, leading to decreased social, educational, and career opportunities.
LMAO…
Oh, let’s not forget inappropriate humor.
Inappropriate humor? Moi? Surely you inappropriately jest.
Always!
I hate hammer on this point, but I think you said it well here. People (well, people who aren;t compelled to think about it all the time) forget that their own perceptions and viewpoints are limited, not omniscient. Do regular people really think they can know what another is thinking or feeling? For myself, I can only say that when I see that somebody is clearly feeling something (I mean, I can see when evidence of a feeling passes someone’s features and body), I know something is happening, but I don’t feel confident that I know what it is, and so I ask. I have no choice, since I’m aware that my guesses are only guesses, and not special telepathic knowledge or insight into another mind. Is my AS simply a greater affinity with reality, and so a lack of assumption and arrogance (which is hilarious since I know friends and family have accused me of arrogance on more than one occasion) about things I can’t possibly know, and uncomfortable assuming?
phew, thanks.
Anyway, I’m patiently watching the PBS special in its entirety before passing judgement.
Also, Rachel, could you pass along a link to your comment on their site? I’m having a terrible time finding where you commented.
Hi Ben,
I can’t link directly to my comment, but it’s comment #54, if I’ve counted correctly. There are 84 comments at this point, so just scroll down a bit and you’ll find it. And please leave your own!
Actually, I think that’s true. I didn’t know what hubris meant. I had to look it up but, I think that’s true. I have been think that for awhile now. I think many of us are just not arrogant. That’s not to say we think low of ourselves or overly high of ourselves. We want other people to be treated just as well and want tobe treated well and we just don’t understand when others have self seeking reasons. This might very us/them and I don’t mean it to sound like that but, I think having trouble finding the right words but, I wanted to add to that comment.
Very well written, Rachel. I’m hoping/wondering if he will respond to you as that journalist did recently.
Thanks, Clay!
I love it when autistic people give neurotypicals lessons in empathy.
Yeah, the irony is pretty outrageous, isn’t it?
Well written, Rachel.
Thanks, Laura.
Well said Rachel, I just watched the first episode and came away feeling completely despondent. That beautiful child appears to be raised in an environment that sees only his disability and not his strengths. This was highlighted beautifully by his sister. Perhaps that is an unfair analysis, but the whole thing came across as incredibly morbid to me.
You are spot on, in that if there are no voices of people living with Autism, then the whole thing sucks. Sorry to be so lacking in eloquence but that really pisses me off. If it’s just parents whinging, and professionals agreeing, then that sucks too. I dont think I can stomach watching any more of the series.
Yeah, I’m a little afraid to even try to watch; even if I could get it online (no TV at home), I fear I’ll just wind up wanting to hit my computer.
Sharon, it sounds terrible — much as I expected. I’m with chavisory; I wouldn’t have the stomach to watch it. Sorry you had to suffer through the first installment.
Chavisory and Rachel, you can bet there will be plenty of discussion on the blogosphere about it.
Journalists parachute into a situation, and become instant experts. Give ‘em hell.
Doin’ my best.
Truly wonderful letter, Rachel. Thank you for taking the time and working so hard to write such a well spoken piece.
I have only heard about the program and don’t think I will be watching it as I don’t have the energy for anything extra right now. This whole month has been quite overwhelming for me.
Thanks, AM!
I’m new here, but I want to say thank you for offering such a deep perspective. My son, who is 5, is high-functioning, but has so many behavioral challenges right now that it’s easy to forget about the person inside. And thanks to adults like you, who write so eloquently, I have faith that he does hear us, and someday we’ll know just what he’s thinking, too.
Welcome, Jess! And thanks so much for your kind words. I hope you’ll find my blog helpful.
[...] An Open Letter to Robert MacNeil Regarding PBS’ Autism Now Series appears here in accordance with the terms of this Creative Commons license. [...]
Rachel–what you wrote resonates with me. It’s a shame that we look to these shows to impart factual, enlightening and educational material and it turns out the subject matter has been less than thoroughly researched. As a mom who has a 7yo with Asperger’s and sensory issues I have a hard time watching what I live…thank you for being a voice of reason and thank you for you blog. You are an inspiration.
Hi Lizbeth,
How awesome to see you here! I have just discovered your blog as well.
I know what you mean about having a hard time watching what you live. When I was doing equine therapy last year, my teacher asked me whether I’d like to come and hear their consultant do a presentation on autism. I wanted to say, “Only if she goes over the whole presentation with me first, so I know she’s not going to say stuff that drives me up the wall,” but the teacher was being well-intentioned, so I just smiled and politely declined.
It’s kinda weird that they don’t ask any of their autistic clients to come and do a presentation, though. Weird, but not unusual, by any means.
You’ve said it a lot nicer than what I have going on in my head. Then again, I’m in post-essay, pre-exam burnout mode. But my general reaction to Robert MacNeil is “Dear Robert, I don’t need to look you in the eye to understand that you’re a jerk. So not yours truly, Corina”
Looking people in the eye is so overrated, isn’t it? And having to actually look at someone’s face while they’re saying prejudicial things about an entire group of people overloads my sensitive empathic circuits in a big way. That’s why I just read the text and didn’t actually watch the video. And I don’t plan to watch any of the series. I enjoy my low blood pressure.
Ha ha, so do I! Mine’s just high enough to be in the “normal” range, and that was just minutes before an anxiety attack. But yes, let’s keep the blood pressure low, or at least wait until we’re in a better state of mind to tackle the minefield.
It’s so important to be mindful about how and when to enter that minefield. I find that, from time to time, I just have to back up and reassess my strategy. When I do, I find that I navigate better and with a much stronger will.
I understand why some of us won’t or can’t sit through the series (the first instalment was okay, a little itchy and painful).
, and report back.
I’m watching the entire thing because I can’t very well evaluate the series and the quality of the reporting if I don’t actually see it (there’s that pesky AS literalism again). For those of my brothers and sisters that would be too upset to experience yet another assault on our collective humanity, worry not, I shall brave the dragon for you
Though I can’t ever be as articulate and insightful as Our Rachel.
Our Ben — Thank you for braving the dragon, and I hope you’ll come out unscathed!
Oh, I should have left the dragon-braving to Ben. I googled this morning for a review of the program, hoping for a balanced critique of the series. No such luck, but in my hits, I saw the transcript of an “extended interview” with the doctor (a pediatric gastroenterologist, I think) who had treated MacNeil’s grandson (for gastroenterological problems). So, I decided to read it.
In reading it…well, I was reminded of the old joke about the prosecuting attorney who said to an accused man, “So, have you stopped beating your wife?” It seemed to me that MacNeil kept repeating questions about a causation link between vaccines and autism until he got the answer he wanted. The doctor initially answered, “Studies have been done and there’s no support for that conclusion,” (I’m paraphrasing slightly)…”Studies have been done and there’s no support for that conclusion”…”Well it’s *possible* that there’s *some* link.” Since this was the “extended” interview, I have a suspicion about what parts may have been dropped for broadcast! However, since I was already upset, I decided to spare my blood pressure and not watch the video.
Now, this is a concerned grandfather (MacNeil) whose daughter is reacting, in part, to her son’s autism by focusing on causation, is a believer in a certain theory of causation, and has made a believer of her father as well…but, in my opinion, this is not anywhere close to balanced, fair, objective *journalism*!
Both of my parents are concentration camp survivors. In trying to explain to my mother why this series has upset me, I made the following analogy: Say, a few decades ago, when stories about the Holocaust really started to hit mainstream media, that a well-respected news network, like PBS, and a well-respected journalist announced that they were doing a series about the concentration camps–The Story of the Nazi Concentration Camps–and it would be the most authoritative, comprehensive program on the concentration camps that had ever aired. They would feature eminent experts, historians, who would inform the public of what had happened in the concentration camps. And then…the program went on to feature “experts” and “historians” who were Holocaust deniers, and who did nothing but speak about things like the gas chambers really didn’t exist, and it was impossible for all those millions to have actually died in the concentration camps. And say, for the sake of analogy, that when this series aired, there were web pages like we have today. And, on the feedback page for the series, there was comment after comment from viewers who praised the network and the journalist for their “bravery” in telling the “truth” about what had “really” happened. And…the respected journalist didn’t interview a single, actual survivor of a Nazi concentration camp…didn’t even bother to find a former sonderkommando (member of an inmate death squad charged with processing the killing in the gas chambers–most were killed, but some survived and have written books)…because, somehow, people who had actually *experienced* the concentration camps did not figure in the story he wanted to tell.
Sorry to make my comment an example of Godwin’s Law, but this really helped my mother understand my perspective, though I thought I’d share.
That’s it, though…I’m staying away from the series and the related web pages. Like you, Rachel, I value my low blood pressure too much.
Watching so many people skip over the whole question of our inclusion is so very disturbing to me. I get that I’m not a severely autistic five-year-old, but I still understand autism better than someone who isn’t autistic at all, and it’s hard for me to fathom why so few people tap us as a resource. The autism parents who post to my blog and value what I have to say are the ones who keep me from feeling utter despair about the whole issue.
I’m pretty wearied by the whole thing, though — so wearied that I inadvertently offended someone on another blog yesterday, a person who is a great mom and whose writing I’ve really been enjoying. As you know, I’m usually so careful with my words, but in my weariness, I ended up putting her on the defensive. I’ve been on the receiving end of that sort of thing — autism moms who are so tired that they put me on the defensive, too. Fortunately, the woman totally got where I was coming from and was very gracious about accepting my apology, which improved my mood significantly.
I couldn’t agree more with you…..I think PBS should be embarrassed for allowing this bunch of lies to air! Thank you for speaking out with such grace! I hope the outrage reaches MacNeil and causes him to rethink his position for the sake of his grandson for starters. I also hope parents of very young children DON’T believe a word of this outdated information.
Janna, from your mouth to God’s ear!
Rachel,
I have JUST found your blog for the first time and I want to say I LOVE YOU!!!! I have a 5 yr old son, somewhere-in-the-middle-depending-on-the-day and your insight,articulation, humor and self-advocacy are the most fantastic, refreshing thing I have come across in a VERY long time. I burned myself out reading about and trying to educate myself in the last 3 years that I have had to walk away….but youhave re-ignited my flame and I just want to send a HUGE thank you…..sincerely, Bella aka “Lito’s Mommy”.
Rosabel,
Thank you so much! Your words are music to my ears. I hope you keep coming back and sharing your thoughts and views.
Missy, I’m sorry, but I’m very disappointed in your letter and the unfounded attacks on Robert MacNeil. The way he described his grandson is EXACTLY how I could have described mine before intervention and it applies to the hundreds of children I have taught over the years. You are fortunate that you are so high-functioning, but you fail to realize that there are autistics who are not as fortunate and do not have a connection to other people and their environment and may never have a connection to other people and their environment. The majority of children I have taught have been institutionalized and could have never lived a life without diagnosis until they were 50. I’m distressed to see the level of deviseness in this community. There has got to be room and respect for others who want to share their experiences without all of this vitriol. You are not helping the autism community when you overlook this wonderful program MacNeil did in love of his grandson and use your neurodiversity rhetoric to bash him like this. It brings a negative light to the autism community and actually doesn’t make me want to ever be a part of the ND movement is this is how they treat other families. That’s how I feel.
Vitriol? I didn’t attack Robert MacNeil. I disagreed with his statement that autistic people lack empathy and that we are less than human. I consider that attitude an attack on all autistic people, from the most “high functioning” to the most “low functioning.” I’m well aware of the the difficulties that severely autistic people have, and nowhere in my letter did I discount those difficulties. I was quite focused on the empathy issue, and that’s because I have enough empathy to realize that even if a child does not show empathy in conventional ways, it does not mean that the child lacks empathy — or humanity — altogether. It’s quite possible to have a frank and open discussion about the struggles of autistic people and their families without calling into question our basic humanity. It happens all the time, on this blog and elsewhere.
If you read the comments to this post, you’ll see that people with less than high functioning children agree with me on these points, and that they understand their children to be highly sensitive to both emotional and sensory experiences. There are many parents of children on the severe end of the spectrum — and with other severe disabilities — who read my blog and know me to be supportive, empathetic about their struggles, and anxious to help them in any way I can. Please read my blog, and my comments on other blogs, before you tar and feather me as an ideologue, as I am one of the more nuanced people you will ever meet. I do not belong to any “movement.” I am a sensitive individual, writing about things as I see them.
If you don’t want divisiveness in the autism community, then please don’t make assumptions about those of us who are “high functioning.” We’re not the enemy here, our disagreements notwithstanding. Disagreement is not the same as divisiveness. And if defending the humanity of every human being on the planet counts as “neurodiversity rhetoric,” then I’m guilty as charged, because that’s all I did in this letter.
“…but you fail to realize that there are autistics who are not as fortunate and do not have a connection to other people and their environment and may never have a connection to other people and their environment.”
No, actually most of us are *acutely* aware of the fact that many autistics are much more severely disabled than we are. What we’re asking is that their humanity, thoughts, and personal experience are always respected and taken into account.
Agreed, chavisory. The idea that someone who doesn’t know me or my work could tell me that I fail to recognize something is part of the very problem I was addressing. Listen to me, talk to me, and get to know me. Then you’ll understand what I do and do not know.
And, of course, I take issue with the idea that nonverbal autistics do not have a connection to other people and to their environment, especially because when nonverbal autistics find a way to communicate, they describe just what I describe about myself: that it’s an overabundance of feeling and perception that causes atypical behavior, not a deficit. Carly Fleishmann (at http://carlysvoice.com/), a nonverbal teenager diagnosed with classic autism, has begun communicating by text in the past two years, and has shown herself to be a funny, sensitive, insightful human being. In one of her pieces, she says that the reason she hums, flaps, and does other stims is to block an overabundance of input by creating an overabundance of output. Most people would look at her and think that she is completely unaware of her environment and of other people, when the fact is that she is hyper-aware. That is the nature of autism. Anyone who doesn’t understand that is missing something absolutely essential about the way that autistic people perceive the world. Carly believes, and I agree with her, that non-autistic people cannot understand autism as well as the people who are autistic every day of their lives, and she goes around the country educating people about her experience. She’s gotten a very warm reception from many autism parents all across the country.
I recently ran across a video (at http://www.huffingtonpost.com/chantal-sicile-kira/non-verbal-autistic-teen_b_623567.html) of another nonverbal, severely autistic young man, Jeremy Sicile-Kira, who took seven years to graduate high school, but gave a speech (via a voice synthesizer) at his high school commencement. One of his teachers sat him down one day some years ago and said words to the effect of, “Jeremy, I know you’re in there, and I just want to let you know that I’m going to work and work and work until I find some way for you to communicate so that I can understand who you are and what you feel.” And he did. His speech brought tears to my eyes.
No vitriol here, but I’m going to challenge Mr. MacNeil’s verbal abilities. I’ve been watching the damned series, and noticed that everyone else, including children, pronounced it correctly, but MacNeil stubbornly (or stupidly) continued to say “outism” or “owtism” instead of pronouncing it correctly. It seems that he can’t learn the first thing about it!
I wonder whether that’s a Canadian pronunciation. It sounds like it might be. He was raised in Halifax, Nova Scotia.
Canadian here, but raised all over the country, pronounce it (and every Ontarian I know) awe-tism
Hmmm… I wonder whether he picked up that pronunciation from somewhere else in his travels. It sounds like a regionalism to me.
A quick note: Yes, I think MacNeil’s pronunciation is regional to the Nova Scotia region of Canada. I’ve heard that sort of initial sound from other people from that area.
Also, thank you so much for your insightful letter. I hope MacNeil himself reads it and learns from it (not just some publicist person).
Not being in the US, I have not seen any of this series. However it is my view that anyone who makes a point about something without considering the whole picture, i.e. interviewing autistics, is making an utterly moot point. Its only marginally better than writing about something of which you have absolutely no understanding.
In many ways, it’s worse. Better to say nothing than to spread harmful misinformation.
Wonderful letter Rachel I am so glad I had a chance to read it. Fortunately I am not too sick to not understand it (F this flu), I agree with a lot of what you state but I want to bring up some interesting points.
People don’t get the difference between compassion and empathy. Me not understanding why something I said hurt your feelings, isn’t the same as someone not feeling any remorse for calling me a retard and then laughing about it when I get upset.
I don’t know if I can stomach watching the NewsHour, I think I need to be high or doped up on anti-biotics to watch it.
Me not understanding why something I said hurt your feelings, isn’t the same as someone not feeling any remorse for calling me a retard and then laughing about it when I get upset.
Very well said! You’ve parsed the difference beautifully here.
I am gonna try watching the NewsHour. Wish me luck Rachel I’ll try to review it on my blog
Good luck! I’ll keep an eye out for your review.
one of the times when i wish my memory for quotes didn’t fail me terribly. i’d like to be able to have this one at hand.
“but you fail to realize that there are autistics who are not as fortunate and do not have a connection to other people and their environment and may never have a connection to other people and their environment.”
I strongly disagree. My adopted brother came to us at 5 through the foster far system. So for 5 long years he never received the services he needed. The day he walked into our home he had more connection to people and their emotions then anyone I have ever met. I have always likened him to a puppy, just in that aspect I’m not a mean big sister
the way they always just know you are sad. And although he has very limited vocabulary (at 12 we have less then 50 words) he can comfort you and he does. Every person with autism is different just as every NT person is. But I also believe every Autistic person has the same, if not better ability to process their world and the people in it. Just because it doesn’t look like our way doesn’t make it nonexisetinet or wrong.
And yes I have worked with, and lived with, autistic children from high-functioning and through the Spectrum and found this to be in true among them all. While doing it differently, and sometimes needing sensory accommodations, every child could and would evaluate, process, and most often connect with their surroundings and those within it
But also on that note. Autistic children can sense and feel when one does not like them. And just like NT people avoid interactions with those who dislike them
I know I am not autistic but Rachel thank you for giving the ones without a voice a voice. My family and I appreciate the insight into my brother. And I really hope this makes sense, I wrote in frustration. The thought of someone saying my brother (or the others I have worked with) can’t feel or connect outrages me.
Delana, thank you so much for your insightful and impassioned words. People like you give me great hope when I find myself weary with frustration and sadness over the kinds of stereotypes that masquerade as truth in this world.
Rachel,
Your comment about being acutely aware of the feelings of everyone in the room and being able to figure out all the possibilities of what goes through people’s minds resonated strongly with me. It’s something I also see in my son, who at three and a half is beginning to puzzle through what people are feeling and respond in a meaningful way.
It is such a shame that typical people make the mistake of assuming they understand what is going on in our heads when we’re not talking. The funniest thing is that we Aspies and Auties don’t afford ourselves such luxury, particularly because we hear so often how incapable we are of preforming such a task.
Thanks for a great post
EM
Thank you, Liz. Of course, I agree with you completely.
I love the series so far. It is not done yet. If by the time the entire thing airs no autistic person is interviewed I will think that is wrong. I am so grateful for that first segment because it focuses on that so often marginalized sub-group – those whose autism manifests with medical illnesses such as bowel disorders, Mitochondrial issues, systemic inflammatory conditions of unknown origin. Many days the only peace my son has is when he is asleep. I am so grateful to Robert MacNeil for putting a spotlight on this sub-group. We need help. We are desperate. Maybe this segment will inspire research into this ailing sub-group.? A mom can hope…….
AMR, so good to see you here.
I really hope that good things come out of the series. Any work that sheds light on the struggles of people whose lives are invisible to most — especially when they’re invisible to people inside the autism and larger disability communities — is always something to cheer, in my book. I just can’t cheer unreservedly about the series, because of the spreading of dehumanizing stereotypes. That puts it outside the pale for me.
But I realize that our experiences and struggles are different, and so we’re concentrating on different things when it comes to this series.
[...] This post also enlightened me to the Autism Now series, and that Robert MacNeil described autistic people as lacking empathy — and that no autistic people were interviewed for this news series — an issue which Rachel Cohen-Rottenberg addresses quite powerfully in an open letter on her website. [...]
Rachel,
I too love your letter and I thank you for pointing out the misinformation in this series.
I AGREE!
I just recently discovered (at 38) that I grew up with undiagnosed Aspergers and one thing I always remember my parents saying when I was growing up was how I didn’t show any EMOTION!
What? I was a bundle of confusing, overwhelming and unmanaged emotions all the time!
Showing and “feeling” are very different and this stereotype of Autistic kids being unempathetic or having issues with their mirror neurons is crazy to me. I think my mirror neurons are on overdrive.
I was extremely sensitive to feelings (and everything else) and like you, felt everyone’s emotions and needed alone time because it was too overwhelming – not because I couldn’t sense it! (An obvious empath)
I scored 68/69 (extreme empathizing/extreme systemizing) on Simon Baron Cohens Empathy test – and the more spectrum people I speak with – them more astonishing I find that this stereotype even exists. Talk about not “reading people correctly.” I think the NT brain needs a new lens for viewing Autism.
I love seeing ASD folks dispelling this untruth! Thank you.
Lori
TEACH through Love
Parent Eduction & Child Advocacy