The Autism Numbers
Stripped of spin and taken in context, the one-in-166 estimate does appear to be sound, if overly simplified.
That is the conclusion of The Numbers Guy, Carl Bialik, in an article in today’s Wall Street Journal. Bialik notes that the familiar (if you travel in autism circles) “1 in 166″ number is based on figures published by the Centers for Disease Control and Prevention and that the use of the “1 in 166″ statistic represents the “worst-case scenario,” as the CDC actually notes the number of children diagnosed with autism to be between 1 in 500 and 1 in 166. Bialik further notes that a “broad” and “relatively modern definition of autism that includes a full range of disorders”—the notion of autism as a “spectrum disorder” encompassing individuals with “severe” autism to Asperger’s syndrome—has contributed to, and even influenced, statistics.
One reason the general public has heard about the “alarming claim” of 1 in 166 children being diagnosed with autism is thanks to awareness campaigns by such organizations as the Autism Society of America (ASA) and Autism Speaks. “‘We’re using what is a very well-known, well-accepted number……We don’t want to be alarmists; we want to be accurate,’” Autism Speaks spokewoman Susan Arons is quoted as saying. Bialik cites the ASA’s webpage, which says that autism is the “fastest-growing developmental disability.”
The passionate advocacy of autism parents has been pointed out by others and Bialik quotes Steven Goodman, associate professor of oncology, pediatrics, epidemiology and biostatistics at the Johns Hopkins Schools of Medicine and Public Health, who notes that “quite vocal activist folks have claimed and vigorously promoted” the 1 in 166 statistic. Alexa Posny, director of special education programs at the Department of Education, also notes that we have gotten “better at diagnosing” autism. Improved record keeping also has much to do with the rise in autism diagnoses, rather than an actual increase in autistic children, Bialik writes. He further notes that most of the studies on the numbers of autism diagnoses are about children: “‘We really do not have a sense of how many adults would have been diagnosed with current-day criteria when those adults were children,’” says University of Wisconsin psychology professor Morton Ann Gernsbacher, who is the co-author of Three Reasons Not to Believe in an Autism Epidemic ( Current Directions in Psychological Science 2005). Bialik ends his survey of “the autism numbers” by quoting Marshalyn Yeargin-Allsopp, a CDC medical epidemiologist, who notes that:
The general public, they want one number. All this information, across studies, areas, populations, they want to distill into one number……My response is: It depends upon the methods used. There’s not just one number out there.”
And it is true, being able to say that “1 in 166 children have autism” or that there is an “epidemic of autism” are convenient, shorthand phrases. And again, if you are a frequent traveler in autism circles—-in Autismland—having a number to cite offers immediate gratification and a feeling of comprehension, perhaps in proportion to how little we constantly feel we know and understand about autism, about what it is, what causes it, how do help our children, why is one’s child so intent on staring at a green latex ball and so made when asked to put it away? In the midst of hand-wringing over what to do, especially as one’s autistic child grows older (the topic of last week’s Newsweek article on autism), there is a certain relief to having a statistic to proclaim on a t-shirt or in a media campaign.
The general tone in The Numbers Guy analysis of the autism numbers is that autism being more prevalent is something to be feared or at least worried over. But what if we turned around and thought the rise in autism diagnoses—an increase due to better awareness and attempts to understand what autism is, and of what human diversity and difference—was potentially a sign of something good, as not so ominous? Of society’s growing, if unconscious, acknowledgement of difference, whether racial, religious, ethnic, national?
What if the numbers add up to an autism epidemic in the sense that we can see autism better because we are learning what to look for?
The prevalence of autism today is a virtue, maybe even a prize. (p. 170) — Roy Richard Grinker, Unstrange Minds: Remapping the World of Autism (forthcoming January 2007)
It is not the 1 in 166 number that is alarming, but how long it is taking us to understand what they really mean.
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POSTED IN: Diagnosis, Psychology, Science, Statistics
26 opinions for The Autism Numbers
Gerard Petillo
Nov 30, 2006 at 3:05 pm
I’ll keep it simple
one “1″ person with autism is too many!
Gerard Petillo
Parents of ANGELS Bronx NY
Kassiane
Nov 30, 2006 at 4:34 pm
If you ask autistic people, we don’t need fixing.
Diversity, and that includes neurological diversity, is no bad thing.
I imagine you, sir, would be MORTALLY offended if I said one NT were too many, or one man were too many, or one person of your ethnic group were too many,
My roommate and I put down our ethnic group as “autistic”, since we’re both too far east to be traditional caucasian and too far west to be Asian. And because autism has a culture.
Food for thought.
Kristina Chew, PhD
Nov 30, 2006 at 4:49 pm
I meant also to note Bialik’s use of the word “modern” in referring to the “relatively modern definition of autism that includes a full range of disorders.” While the word and the diagnosis of “autism” arose in the 20th century, we cannot be certain that there were not, that there have not been, autistic person throughout history. I am trying to formulate how I might begin to “look for” autism in the ancient world.
David N. Andrews MEd (12-2006)
Dec 1, 2006 at 7:55 pm
GP: “I’ll keep it simple - one “1″ person with autism is too many! Gerard Petillo
Parents of ANGELS Bronx NY”
So I should not exist? My daughter should not exist? Who the hell are you to judge life like that? Who died and made you god?
How does it feel to be a fascist?
Dale A. Smith
Dec 2, 2006 at 7:28 am
People with Autism are some of the most intelligent, intellectual, creative people in the world. It is good to to shed new light on a subject as autistic people often do. They look at the world with “new eyes” and create new solutions when others have given up too easily. Learning and understanding is the way to find truth and progress. Condemnation and intolerance leads to ignorance and repression as in the case of Gerard Petillo.
Dale A. Smith
Dec 2, 2006 at 7:53 am
Furthermore, I would suggest that ALL people are valuable in different ways for different reasons. No single human being is ALL good nor ALL bad. People have different characteristics and perspectives on life, so we can learn from each other. I expect even Gerard Petillo has something valuable to say, occasionally. However, on November 30th, 2006 at 3:05 pm he had nothing what-so-ever worthwhile to say.
Kristina Chew, PhD
Dec 2, 2006 at 12:37 pm
Thanks for everyone’s comments here and I hope we can keep on exchanging on views, especially when those views are in conflict. We have to keep on talking to each other.
Gerard Petillo
Dec 2, 2006 at 12:50 pm
I apologize if I offended anyone. I am remiss. I should have spent a little more time on that post.
What I was referring to was that much time and effort was spent on the article of crunching the autism numbers. Is it 1 in 166, 1 in 200, 1 in ?.
One person SUFFERING from autism is too many.
I am a parent of a child with autism. It really hurts me that my son will never have an independent life. I associate with other parents of autism who feel the same way.
Kassiane, I respect your position that some autistic people don’t need fixin. My son needs some fixin, enough to survive in this world after I leave.
Gerard Petillo
Parents of ANGELS
Kassiane
Dec 2, 2006 at 8:36 pm
Fixing and teaching are two different things.
You fix a car.
You TEACH a child. I imagine your child has much in common with a child who I’d be spending a lot of time with right now were I where I grew up. We’d be playing in a lot of snow, or going Christmas shopping, or playing with the Island of Misfit Toys figures (his FAVORITE). And I’d be helping him explore advocacy, and survival skills (if it was nice enough out we might even take a bus)-reading, job skills, I had the…honor, I guess, since his family trusted me…of teaching him to shower independently…we looked at maps…made visual shopping lists (this was for MY benifit too!).
And he learned advocacy, and some real world skills. But he isn’t “fixed”, because he was never broken. Even if “NO!” is the only word he ever uses that everyone understands, my dear boy may need different teaching and help to live a good life, but he is never broken.
And yours isn’t either.
Gerard Petillo
Dec 2, 2006 at 8:51 pm
Thank you for helping me to understand my son’s disability.
He turned 13 this week.
Kassiane
Dec 2, 2006 at 9:59 pm
Happy birthday to him!
Tell him someone wired a lot liked him says so. And if he is into the deep pressure thing, squish him for me (he’s probably bigger than me, most 13 year old boys are or are getting there, but I’m strong).
If not, you know what he likes.
And 13 isn’t too late to learn. It never is. Keep on keepin’ on, as they say.
Autism Vox » Fixing vs. Teaching, Science vs. Pseudoscience, and What Did You Really Think About the Video?
Dec 4, 2006 at 2:16 am
[…] On the post The Autism Numbers Kassiane of The Rettdevil’s Rants notes that “If you ask autistic people, we don’t need fixing” in response to a parent of a recently-turned-13-year old. […]
Darryl
Dec 5, 2006 at 3:48 pm
KassianeIf you ask autistic people, we don’t need fixing.
I can’t let this point of view go completely unchallenged. At the risk of offending some of you, I assert that some autistic individuals “need some fixing.”
My brother was born with a heart defect. If he had not undergone surgery in the first days of his life he would have died. He needed some fixing. Throughout his life he has had to limit his physical activity. He is now an adult whose heart is about to give out. Once again, he needs some fixing. At some point in the future he will need a heart transplant. There is a very real chance that he will pass away before the transplant is possible.
There is no doubt that a piece of my brother is broken. That has never diminished his value as an individual nor as a brother. If anything it has made him seem more valuable.
As another example, I have suffered from depression for as long as I can remember. I have spent time in counseling, a form of teaching. It helped, but only to a certain point. On the other hand, medication makes a bigger difference. I’m broken and need some fixing. Counseling teaches me to cope, but medication makes a partial repair of my defective brain. Medication doesn’t completely fix me, but it does change a piece of who I am into a healthier alternative.
I bring up these examples for several reasons.
First, people are no less valuable just because they may have broken pieces. Do I love my son any less because he has autism? Of course not! Do I think he is less of a person? Preposterous!
Second, teaching has its limits. Autistic individuals learn with varying degrees of success. Some people’s limitations are such that they truly cannot learn sufficient coping mechanisms. They are broken. If medication or whatever other methods can “fix” some of their broken pieces they are better off. They are happier. They are less anxious. Greater possibilities open up to them, opportunities they are glad they finally have access to. They gain the very benefits teaching attempted but failed to provide them. If there is no way to teach or “fix” these individual, they remain broken, but they also remain wonderful individuals we value and love just as much.
Third, it is worth pointing out that some alternatives are healthier than others. My medication changes who I am. It changes how I view the world. The medicated me is unquestionably a better alternative to the depressed me.
I recognize that many autistic individuals truly appreciate who they are and like the atypical way they view the world. I am happy for you and don’t question your self-image. I recognize that being autistic even has its advantages. I don’t think you should change. However, once you consider the full spectrum of individuals we call autistic, those advantages are sometimes dwarfed by the negatives. What is true for you is not necessarily true for everyone who falls under the umbrella label of autism. You may be “just right” exactly as you are. That isn’t true for everyone.
Those of you who jumped down Gerard Petillo’s throat, please recognize that you speak for only a subset of autistics. Your point of view simply doesn’t apply to many of our loved ones. Failure to recognize this fact invalidates the very real experiences of thousands. Don’t be guilty of the very strain of intolerance you accuse Gerard of harboring.
I’m not trying to be contentious. I’m not trying to offend anyone. I want Autism Vox to remain a welcome place to interact. But please, recognize that there are valid viewpoints which differ from your own and which apply to situations which, in all likelihood, differ from yours.
Kristina Chew, PhD
Dec 5, 2006 at 4:50 pm
Darryl, thanks for a very thoughtful comment; I think it’s inevitable that some contentiousness would arise in this issue and I think that is good. There do seem to be different “camps,” if you will, in discussions about autism, and the exchanges among these different persuasions does often seem to become a black-and-white exchange. Again, I hope very much that Autism Voc might continue to be a place for all of us to exchange beliefs. I don’t think we can afford to stop talking to each other.
For myself, I prefer not to use the metaphor of “broken” and “fixing” for Charlie. He needs to be taught, just as all children need to be and teaching does indeed change him.
Kassiane
Dec 5, 2006 at 9:44 pm
Someone explain this to me:
People who can type, regardless of functioning level, can only speak for “high functioning” autistics. (and when speaking about broken, Mr Literal, I was talking soley about autism. Anyone wants to fix my pituitary gland, have at it).
BUT
Parents who aren’t autistic AT ALL speak for non high functioning autistics?
If I may,
What the fuck?
There is no logic there.
And I am “moderate functioning” if we have to use that ungodly language, with a “broken” pituitary, epilepsy, the Rett mutation and some associated crap with that. I just type well. I have failed, know the chemical name, structure, and mechanisms of action for more medications than most doctors can name…see http://www.crazymeds.org, I help with it. Autistic run. Not my site, I just wrote the Keppra page. But I memorized most of it.
But I, as a person, am not broken. No one is. Needing medical help and being BROKEN are 2 entirely different things.
*shakes head* just like the cancer comparison…*sigh*
Kristina Chew, PhD
Dec 5, 2006 at 10:16 pm
And I think we might all agree that helping out kids to speak for themselves so we parents don’t have to (or don’t to all the time) is something to strive for.
Darryl
Dec 6, 2006 at 3:01 pm
I spoke with respect. I would appreciate an attempt to reciprocate some measure of that respect.
Who said I’m not autistic at all? I’m not diagnosably so, but by informal standards I fall on the spectrum. I know exactly what you mean by neurological diversity because I stray from the average by quite a bit. More than your typical person, I understand the strengths and weaknesses of different ways of thinking. I am indeed “Mr. Literal”, one of my autistic-like traits. How interesting that you use that as a means to insult me.
I can speak for my son in a more meaningful way than you can because I know him and care for him. I knew him before his autism expressed itself. I knew him before he stopped talking. I knew him before he started hurting himself. I knew him before he became so easily frustrated, so easily distracted, so easily angered. He went through a dramatic change in a matter of a few weeks. If he could speak today I absolutely know that he would say it was a change for the worse. He has learned to cope quite a bit over the past couple of years but life is still very difficult for him. I dream of the day he can speak for himself as you can, but in the meantime I consider myself to be the most qualified spokesperson he’s got.
But that’s all beside the point. I wrote my earlier post as a cry for tolerance. So many discussions about autism turn into shouting matches at the drop of a hat. People forget we’re all on the same team. We’re so anxious to condemn and ridicule that we jump on any statement that even hints of an alternative viewpoint. It’s like we want to be offended. I put a lot of effort into my earlier post hoping that people would attempt to see the good intentions of controversial comments instead of automatically jumping to outrage.
“Needing medical help and being BROKEN are 2 entirely different things.”
I very clearly defined how I was using the word broken to include the need for medical help. It is obvious that Gerard Betillo was using the term to include the need for some form of help for his son. I felt that the responses to Gerard’s comments were unfairly harsh. People came down on him for the offensive interpretation they wanted his words to mean, not the compassionate message he obviously intended.
I was excited when I found autism vox last week. It looked like a great opportunity to support each other. Now I see that anyone who doesn’t toe the party line is run out of town.
Kassiane
Dec 6, 2006 at 5:05 pm
In case you didn’t notice, some people talked to Mr Petillo kindly.
And no, we AREN’T all “on the same team” in the autism world.
There are autistic people, most of whom wish to remain autistic, and there are people who wish to make us non autistic.
I have yet to meet anyone who wishes to deny anyone progress & education. I have met LOTS of people who say that we (autistics) are better off dead.
As an autistic, I DO have a deeper understanding of the autistic condition in general than NT parents do.They may know their child’s favorites, but there are things–sensory, conceptual, experiential–that one cannot understand at a FUNDAMENTAL level without living it. Intellectually I can tell you how wonderful the 1000 pound squish i got on my at the time 100 pound body was in 2002, but EXPERIENTIALLY chances are SOME part of your brain is asking if I WANT broken ribs or a punctured lung or something (and no, I’ve never broken anything doing that except a shoulder blade, and those don’t seem to do a whole lot).
Maybe one day we’ll all be on the same team, but it’s going to be a while. I look forward to that day of acceptance.
Kassiane
who is generally blunt, occasionally rude, and when she’s hateful you can’t miss it. REALLY can’t miss it.
Darryl
Dec 6, 2006 at 6:28 pm
“I have yet to meet anyone who wishes to deny anyone progress & education.”
That’s the team I’m referring to.
“I have met LOTS of people who say that we (autistics) are better off dead.”
I have never met such a person.
…there are things–sensory, conceptual, experiential–that one cannot understand at a FUNDAMENTAL level without living it.
I totally agree. I believe there are aspects of my son’s experience that you have not lived, significant aspects, and that’s EXACTLY why I have a hard time accepting that you represent more than a subset of the autistic community.
“In case you didn’t notice, some people talked to Mr Petillo kindly.”
I did notice. I felt that your initial response to him in particular was both sensitive and well-worded. Other posters were less interested in educating, more interested in insulting. I quoted you because you provided the most convenient launching point for my comments. Your later “wtf” response came off as overly dismissive and condescending. I apologize if I took it wrong (to be honest I don’t think I did).
“Maybe one day we’ll all be on the same team, but it’s going to be a while. I look forward to that day of acceptance.”
Even people who appear to be on opposite sides of the fence are often closer than they seem. Semantics get in the way. If your idea of acceptance includes thinking it’s OK for my son to rip chunks of flesh off his face then that day of acceptance will never come. But I don’t think that’s what you mean. My wish is to stamp out even the impulse to dig at his face. If acceptance means that I can’t have that wish then it is unlikely the day of acceptance will arrive in my lifetime - I can’t stop wanting my son to not struggle with impulses that are harmful. On the other hand, if acceptance means that I love, appreciate, value, and enjoy my son no matter what he does to his face, then the day of acceptance has already arrived.
Kassiane
Dec 7, 2006 at 4:55 am
Go no further than john best jr, rescue angel extraordinare, peter singer, or alison tepper singer, for examples of people who say we’re better off dead. Ms Singer can be found saying so of her own daughter in front of her daughter, and this has been plastered all over the internet. 8 minute mark of their video that makes me spench and then I need a shot so really it’s quite a hassle…my parents for other examples..stepparents as well…they’re real pieces of work, though. Every woman who aborted a Down’s baby would have done the same for an autistic–so take that number into consideration as well…
No one wishes for someone to be in so much frustration or pain (has trigeminal neuralgia been explored? migraines? face tearing brings pain to mind) that they rip themselves apart. But the choices aren’t that or neurotypicality. I’ve been a mighty headbanger in my day (i.e. yesterday, a $300 i don’t know kind of did me in). Lots of us have. Lots of us have handbitten (I stopped because it always tastes like chalk now from gymnastics. That’s the only thing that made it NOT frustration impulse #1). OTHER things that hurt most people. I don’t have them, or don’t think they hurt, but others have lived them. No one WANTS anyone to be that frustrated though. Or no one I’ve met has expressed that opinion.
The thing is–they don’t just pathologize tearing out hair (oh wait…I did that…) or chunks of face or head banging or what have you. PLAYING ALONE is wrong. FLAPPING is wrong. TONES OF VOICE are wrong. Typing as language is wrong. Being really good at one or 2, maybe 3 things and utterly hopeless at everything else is wrong (last I checked that was a GOOD thing when you GROW UP). Not looking at people? Who cares?
They want to eliminate us, rather than help us, because we’re different. I’m glad you seem to have your head on straight with goals as far as what is important to deal with and what isn’t, but so many don’t….to the point of wanting to make us go away before we’re born.
Annihlation =/= acceptance. And right now there are a lot of reasons for people to be keyed up about that sort of thing.
Kristina Chew, PhD
Dec 7, 2006 at 8:45 pm
Darryl,
First, I can’t say how much I appreciate your thoughtful comments here and I hope you will continue to keep reading—-my goal with Autism Vox is to make it a place for all to comment. I have learned a great deal from everyone who has posted comments here and I still have a lot to learn. I much appreciate Kassiane’s input here, it goes without saying, though I will say (and Kassiane please correct me on this if you’d like) that we do not agree on everything. In particular, my husband and I believe that ABA has been crucial to Charlie’s education (and our home program is run by the Lovaas agency), while Kassiane (again, please note I am not trying to speak for you, just conveying information) has some rather different views about ABA and Lovaas, as so many in the autistic community. But we do both care a lot about autistic persons and about how autiskm gets talked about and I think this is what helps us to keep on talking, and I think (in my very humble opinion) that the autism community needs this kind of debate.
Thank you very, very much.
Gerard Petillo
Dec 8, 2006 at 10:53 pm
I promise NEVER to start a thread with the statement:
“Let’s keep it simple”. This thread has been anything but simple :)
Darryl, Thank you for your thoughtful and comprehensive comments on my behalf :)
Kassiane, Thank you for speaking to me kindly :)
Just a little background- I was a New York City Police Officer for 23 years before retiring recently. Part of the job description of being a cop is to be placed in harms way occasionally. One of the things I have been doing in my retirement is greater participation in a support group for parents and caregivers of children with autism. An organization in which I was one of 5 founders almost 8 years ago.
Some people on this thread misinterpreted my message and clearly conveyed in their comments that they were offended. The thought that I offended anyone in this community is absolutely devastating to me. Please know that I would not hesitate one second to put myself in harms way to help anyone in this community.
I can’t put enough emphasis on how much I have learned from other parents in advocating for my son Nicholas through the years. Other parents have been until now my greatest resource as I navigate this journey of autism. (cpse, cse, adolescence etc…)
I discovered Autism Vox in late November 2006. Incredibly, I now exchange dialogue with people affected by autism as well as other parents. As a result of my participation with Autism Vox, I am now getting more information and a different perspective on autism. This dialogue is so valuable to me as a parent, an advocate, and an organizer of a support group for other parents.
I respect everyone’s perspective even if it disagrees with mine. I too hope we can all continue to bring to the surface our knowledge, experiences, and perspective in a productive non offending manor.
Just to echo Kristina’s statement- “I think (in my very humble opinion) that the autism community needs this kind of debate.”
Gerard Petillo
Parents of ANGELS Bronx N.Y.
Kristina Chew, PhD
Dec 9, 2006 at 2:33 am
Gerard, thank you so much for your honesty and for your very courteous and thoughtful comments here. I for one am very glad that you have been sharing your perspective here!
Heidi
Sep 17, 2008 at 1:42 pm
I would just like to say that as a grade 12 advanced biology student doing a research project on autism, the statistics amaze me, 20/10000 people have autism, that’s approximately 13 MILLION people in the world. that is a huge number. I do not want you to think that all teenagers are blind to mental disorders, because we are not. My project partner and i chose this topic because she used to babysit a small boy with autism, and it touched her. i would just like to say to those with autism, that there are always people behind you to support and help you, and no matter what there is always someone backing you.
-Heidi Snow, Grade 12, Pictou Academy
Pictou, Nova Scotia.
Kristina Chew, PhD
Sep 17, 2008 at 2:57 pm
@Heidi, thanks so much for you kind words—may I ask what the focus of your research project is? Very very best—-
Heidi
Sep 17, 2008 at 8:27 pm
The focus is causes for autism relating to the brain.
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