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Open Thread: The Autism Rights Movement

On today's show, we heard from the president of the Autistic Self-Advocacy Network. Ari Ne'eman, 20, has Asperger's, sometimes described as a milder former of autism. Ne'eman argues that people with so-called spectrum disorders have a right to exist as they are. Activists for neurodiversity say society needs to worry less about "fixing" people with diagnoses and concentrate more on making a place for them in society. "We are proud of who we are," he says. "We're proud of the community we are building."

In the U.K., the National Autistic Society has been running public service announcements for a couple of years now. The idea is to show more normal people the view through an autistic person's eyes. The clip above comes from "Think Differently" (check out parts two and three). The new campaign, " I Exist," focuses on autistic adults.

Take a look. Think it over. And tell us, can you relate to the autistic or Asperger's experience? Should society make more room for neurodiversity? Is the Autism Rights Movement onto something?

Bonus:
How neurotypical are you?
New York magazine on the Autism Rights Movement.

Comments

 

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Yes, I think there is too much pressure placed on parents and pressure which parents place on themselves to find ways to "make" their children fit in. Children should be permitted to be different in their habits, interests, and learning styles. They should be allowed to thoroughly enjoy their "nonstandard" interests and habits, their limited interest in social interactions, without being made fun of, taunted by classmates at recess when social differences really are on display, or mashed into a mold by frustrated teachers.

These children grow into awesome adults. Adults who are not considered "standard" made the world a much better place. The TV ad posted on this blog accurately shows the socially obnoxious girls as much more of a nuisance than the the subject of the ad. And they would raise "cain" if someone tried to make them fit into a mold or meet a preconceived notion of socially acceptable.

Sent by T. Weiss | 9:47 AM | 6-2-2008

A solution that requires everyone to change their attitude is not reasonable. It would be nice, of course, but completely infeasible. I have a friend with Asperger's syndrome. He's a great guy. Every so often he is prone to quick bursts of temper or the need to remove himself from the room abruptly. These behaviors are easy to overlook once you get to know him and you understand his condition. If my neurotypical friends showed the same behavior I would distance myself from them. I also don't think I would have the same level of patience if this person were sitting behind me in a movie, driving the bus, or working in a restaurant. How would I know that this stanger wasn't just a creep?

Sent by Dave Wiley | 10:03 AM | 6-2-2008

I have Asperger's in my family, but this article evoked an interesting connection to me. I am currently studying American Sign Language and American Deaf Culture. The Deaf community expresses similiar opinions: the desire for acceptance, the resistance to 'being cured' of deafness. A common comment is 'if a deaf person were offered a pill that would take away their deafness and make them totally hearing, would they take it?' The answer is often, "No". Why? Because they're not sick, they are who they are supposed to be. Ari Ne'eiman brings up the issue of education and the need to better taylor that education to the needs of the individual. This also meshes with the concerns of the Deaf community. So, is this a trend? Groups of heretofore neglected people groups themselves advocating for a changed status? Or is our society finally mature enough to recognize the diversity of people's experiences? Or both?

Sent by J. Smith | 10:23 AM | 6-2-2008

I consider myself an advocate for embracing difference for the sake of difference. After hearing this morning's segment on the Autism Rights Movement, I have a newfound solidarity with this group of folks. As a lesbian woman, I am all too familiar with the experience of being looked upon as a social anomaly and/or nuisance. And just like Mr. Ne'eman declared in regard to his Aspergers, I would never choose to be straight if I were magically offered that opportunity. I understand the strength and pride that can come with inhabiting an identity of difference, and I commend those of the Autism Rights Movement for the work they are doing. Thank you, BPP, for introducing me to this cause. I hope to learn more about the movement and to develop my skills as an ally to this community.

Sent by Lauren A. | 10:42 AM | 6-2-2008

Kudos to Mr. Ne'eman and his organization! Autism is definitely an identity, a culture, even. However, my particular two teenage autistic boys will probably never understand such a group as they are right in the middle of the spectrum. Not that we haven't intervened - they have come a very long way due to dietary changes, environmental changes, detoxification and various therapies and activities. As pointed out in the interview, I did go through a grieving process and still do sometimes. But we've learned to be proactive regarding my sons' autism and indeed see them for who they are. What I would like to see for my family's particular situation is accountability on the part of the pharmaceutical companies and CDC - I believe this is what "kidnapped" my kids - who have been great contributors to this condition. Statutes of limitations make it too late for the vaccine court for us. It is refreshing to see Mr. Ne'eman's organization moving forward with providing identity and quality of life for those individuals with autism who are able to participate and enjoy it.

Sent by Trish Cobb | 10:55 AM | 6-2-2008

Like any minority, nt-people are going to focus on the SUCCESSFUL people with autism. They'll become STARS. And it'll take a loooooong time before that compassion and tolerance trickles down.

It must have been really easy to interview a successful Aspie. And waaaay too hard and maybe waaay too spoooooky to talk to poor people with autism.

I'm in my 20s. Most of my meals come from charity; I don't always have shelter available so sleep outside a lot. My SSDI check is a joke, especially with the cost of everything going up. Im an intelligent person, and a non-violent person. The only thing keeping me in poverty is Asperger's.

Now most people are going to look at my story and say: "Well gee, if Ari Ne'eman has a job why don't you? It can't be that hard if he did it." Most people who stand up for diversity, don't stand up to make sure those who are having problems have the tools they need to make it.

Also: People with autism are 7 times more likely to encounter police. Yet only 2 states out of 50 require any time of ASD training for police. As such, people with autism are more likely to be abused by police.

Sent by Brian | 1:33 PM | 6-2-2008

Brian,

You're right - autistic people are more likely to be poor, abused by the police and subject to other atrocities. However, so are Hispanics, African-Americans and many other minority groups. I think it would be a good idea for your viewpoint to be heard - but please don't confuse "autism rights" with no help for autistic people. Actually, Mr. Ne'eman happens to be active in encouraging more of a focus on police and employment issues as part of his conception of neurodiversity (see his statement in Florida: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=27 I'd be interested in hearing what you think of it). My conception of neurodiversity shares those attributes too.

If anything, advocacy geared at breaking down the barriers that keep us excluded in society should serve to improve the position of those of us who are the least fortunate. Neurodiversity is aimed at helping us get the supports we need so that we aren't stuck being poor, unemployed and dependent on neurotypicals for basic necessities.

Sent by Jon | 3:19 PM | 6-2-2008

Segments like Rachel's interview with Ari Ne'eman are one of the reasons I keep listening (though sporadically, I admit) to the Bryant Park Project. You guys have come a long way since the pilots last year.

This is an issue I hadn't given much thought to before now, and Brian's comments above are also enlightening to a different experience than Ari Ne'eman's.

Also, while the comments on this entry have been positive, I worry that too many people will view the idea of being "neurotypical" as political correctness and have hostility towards terms meant to convey solidarity with a group of people who have been misunderstood and in cases mistreated.

Sent by Andrew Jones | 5:12 PM | 6-2-2008

Thank you for interviewing Ari Ne'eman He does a fabulous job of representing neurodiversity and autistic advocacy. It's time to start calling the mainstream autism organizations in the US on the abusive way they have described autistics and autism in their (successful) attempts and prising money from Big Private Foundations and the US Gov't. "Big Autism" in the United States, particularly so called "Autism Speaks" is patently abusive to people like Ari Ne'eman who wish to speak for themselves. Autism Speaks has excluded the voices of autistic people from the beginning in a very deliberate and systematic way, and when called on it they refuse to respond. Autistic adults are not even worthy of an answer from Bob Wright and his gang. Yet they manage to suck up to the most insane element of parents (a very small but very vocal group that includes the Wright's daughter) and so have included in their organization some of the most outrageous and ignorant of the extremist antivaccine and mercury phobic parents.

Anyone can see how dignified and balanced Ari Ne'eman is, yet Autism Speaks has no time for him or any other autistic adult. It would be as if the NAACP was entirely run by non-African Americans and attempts by African Americans to give input were deliberately rebuffed by the organization.

One final point. I was also featured in the NY mag article. I have Asperger's and I'm also a parent of an ASD adult. I'm just as much a parent as any other parent of an autistic offspring, but people like myself (autistic parents) are ignored as much as people like Ari are ignored.

Sent by Ms. Clark | 9:43 PM | 6-2-2008

I send forth to the BPP, and NPR in general, cargo-plane loads (as I'm finishing up a semester abroad in New Zealand) of gratitude for their coverage of a seemingly underground yet nationally stirring movement for a growing portion of the American population.

At age three, I was formally diagnosed with PDD (Pediatric Developmental Disorder), a milder disability on the autism spectrum. I learned sign language for a couple of years, and couldn't even coherently converse until the age of five. Throughout most of my elementary school years (from age five to 11), my supevisory district (with my parent's consent) mandated me to attend special education gym & speech sessions during the school day. Often, we were outright segregated (as Ari so eloquently conveyed) from other portions of the elementary school demography, a whole gymnasium or classroom filled with mentally-challenged students and perhaps one school aide. Even at age six, I felt the intangible weight of being a student pariah, looked on piercingly by all my other classmates as I was ushered oout of a natural history talk on dinosaurs or a surprisngly engaging session of advanced multiplication. I hadn't committed any wrong, but still felt my face & upper body flush with unexpected heat & shame. Only when I let go of these sessions from my middle school year onwards, to make my own mistakes, to grow up as my fellow peers did, only then I realized my commonality with peers. Only then did I make lasting friendships, many lasting to this day. Only then did I uncover my nerdy, "dorky" preobsessions in English, American Studies, & Communications that my peers, professors, friends, & family can appreciate for me. Only then could I fall in love on more than one occasion, only to have my heart "broken" consequently and grow through in relationships & social understandings beyond any of my family's earliest, wildest dreams. We need, as a society (national & global), the need for complete social integration, desegregation, & awareness. We need to shatter the boundaries of the stereoptypical heuristics found in current comprehension and "understanding" of autistic individuals. We need to breed empathy in our society on this issue, not apathy or antipathy. Thank you, yet again BPP & NPR, for insight & enlightenment that can be so hard to discern elsewhere in American media & society!

Sent by Matt Young | 11:41 PM | 6-2-2008

As a non-autistic person I was embarrassed and almost appalled by Rachel Martin's questions. Mr. Ne'eman was trying explain that autistic people are diverse and functional, but her questions were based on a single dimension of the autistic. I know it wasn't deliberate, but it still was a little disturbing. When she asked "how do you know what you are missing" reminded me of the time a Filipino asked me "doesn't it bother you that your hair doesn't move." Of course not, I didn't live a life of comparisons.

God did not create one normal person and millions of abnormal people. We are different for many different reasons. I remember the story of one autistic woman who saw numbers as shapes and colors, imagine that. I think I am missing something.

Sent by Eight | 2:41 AM | 6-3-2008

I took the quiz. I'm average in four categories, above average in four categories, and below average in four categories. I don't know what that all means, but four is my new lucky number!

Sent by Matthew Scallon | 3:35 PM | 6-3-2008

I really missed something with this piece.

So this Ari guy is disabled somehow. Admittedly it was only audio, but I couldn't tell that anything was wrong with the guy. The given example about the flickering light bulb seems like some ado about really nothing.

What IS autism, really? The only reference I have is the math/music "autistic savant", but it's broader than that? Now? or always?

Sent by jw | 8:44 PM | 6-3-2008

Autism is complicated. :-D It's a spectrum that includes people who can't speak (although who can conceivably type to communicate, if given the right tools and education and who often learn to communicate verbally if given the right early education) as well as people who are very similar to us, but have a lot of trouble learning "social rules", particularly with nonverbal communication. There are also difficulties associated with it relating to sensory sensitivities (depending on the individual, it can either be over or undersensitivity), like the thing with the lamps (a lot of autistic people get headaches around fluorescent lightbults) and some kinds of fabrics. A lot of autistic people also have obsessive interests, that can sometimes result in exceptional proficiency in particular areas.

Sent by Jon | 7:32 AM | 6-5-2008

To further address a question raised by the interviewer: How does the public education system deal with all the different types of autistics? Yes, it's daunting to to approach it in such a micro way; to feel that in order to accommodate all different types of people, we need to design hundreds if not thousands of different programs. But it's daunting to micro-manage *anything.* A more macro approach would be to simply not apply the basic premise that we autistics are broken and need to be fixed. We seek to enjoy the same accommodations that every other so-called "normal" person takes for granted: that systems, educational and otherwise, are in place to accommodate people; not the other way around. If systems can accommodate the very broad range of what we now consider "normal people," then certainly there's room for autistics. And that's not a daunting prospect.

Sent by Charles Smith | 11:16 AM | 6-5-2008

By the way, this isn't actually a twist on the general concept of disability, at least not as seen by the disability rights movement. Most people in the disability rights movement, regardless of actual condition, consider disability to be largely a societal phenomenon -- something where the needs and rights of some people are taken for granted, and other people they're seen as special, extra, too much work, ignored, or something else like that.

Sent by A M Baggs | 4:46 PM | 6-5-2008

Absolutely society should make room for neurodiversity.

It's crucial that we not confuse this form of autism with the type that affects my beautiful son. His autism is severe. He cannot type. He cannot speak. He cannot gesture. He cannot blog or do an interview with NPR. To me, it's sort of like comparing someone who is slightly nearsighted with someone completely blind. Just not the same thing...

Sent by Judith Ursitti | 8:52 PM | 6-6-2008

"The person usually has a strong desire to seek knowledge, truth and perfection with a different set of priorities than would be expected with other people."

"The person is usually renowned for being direct, speaking their mind and being honest and determined and having a strong sense of social justice." -Tony Atwood, PhD, renowned Asperger's "expert".

Here's the cool part in all this:

People who study Asperger's say that those with Asperger's often (we are speaking averages - not everyone is the same) are more attuned to issues of social (and environmental) justice than NTs. More concerned.

So who has the disability then? Aspies or NTs?

Oh snap!

===============

As a person with Asperger's... I looked at the quiz... was overwhelmed with the amount of questions - 150... and said "screw it".

But I did go back and read some of the questions. My favourite is:

"Do you enjoy watching a spinning or blinking object?"

It's the type of question that could work in an Asperger's quiz or a High Times quiz.

A lot of people are going to take this quiz wrong though. There's a lot of terms that carry weight in psychological circles, but have more looser definitions in general society. Being "stressed" or "depressed" as the words are used in most casual conversations are not the same as the debilitating phenomena the words refer to in their True clinical definition. There's a difference between merely noticing distant sounds or other sensory input, and truly being distracted. Etc Etc Etc.

And if the jargon isn't enough to make things tricky, some people are going to be reeled in by the novelty of the quiz and the novelty of reading about Asperger's, and are going to on some level skew their answer's to make themselves come off as more "quirky" than they actually are.

Sent by Brian | 12:19 AM | 6-7-2008

I think that for many people on the Autism spectrum (including myself) the idea of "I'm not disabled, I'm differently-abled" is especially appropriate. Treatment for the condition (and nobody's saying it shouldn't be treated, just that the focus on a cure is unnecessary) ought to focus on finding the unique strengths (which can be considerable) and playing them for all they're worth, and also identifying the areas where misunderstandings are likely to occur (on both sides -- especially in the social arenas) and working for better understanding.

Learning to read body language for me was like learning a foreign language. Before a concerted effort, I couldn't tell whether someone was joking, or being sarcastic, or whether they seriously wanted to know the answer to a question or if it was rhetorical. I was often accused of being stuck up and rude because my tone of voice wasn't communicating my true emotions to my peers. Now that I've pretty much learned the language, I'm fitting in a lot better, and find that the relationships I crave are much easier to form. Before that though, life was REALLY tough. My therapist says I have something akin to PTSD from the teasing I went through in high school.

Now if you take into account that I'm on the very "high functioning" end of the spectrum, you can imagine what people who are farther along go through. If there had been better education on both sides -- more "foreign language" lessons early on -- Life would have been a lot easier. That's the sort of treatment that Ari is advocating.

Sent by Karen | 7:10 AM | 6-7-2008

I was deeply offended when I saw the letters that were used as a campaign to find a cure for autism. I was offended because it made it seem like autism steals your life. It doesn't with minor cases. I have Asburgers Syndrom, a low form of Autism. I don't have a hard life because I have Autism. I feel that all those parents who want a cure don't want to deal with the part of themselves that just wants their child to be "normal". They have to deal with the fact that yes their child has autism. Does that mean that that child will not live a good life? Not necessarily. The parents have to find a place where there are the services they need. Autism is not stealing their life. What doesn't kill you only makes you stronger.

Sent by Robert Egley | 9:28 AM | 6-10-2008

I appreciate the vigorous and open discussion about autism. I believe the dialogue about the condition is a positive step forward.

One aspect of autism that I would like to discuss is the way it affects the siblings of those affected by autism. I have a younger sister who is autistic. While our family has been wonderfully supportive of us both, growing up with an autistic sibling has been a challenge. I often found myself caught in between the responsibility of taking her out to play with me, since she was unable to make her own friends, and the desire to be free. I also felt that I had to perform on her behalf as well. Our parents never told me any of this, but the pressure was there since I was a little girl. Because I knew my parents were already worried about my sister, I was unable to communicate any difficulties I had and felt guilty for feeling upset. I became depressed in my teens and it took a long time and professional help for me to deal with the situation.

With a rise in autism, there needs to be a systematized effort to help the siblings deal with jealousy, guilt, feelings of neglect, etc. It is a complex and difficult situation for a child to understand or express; adults must help them cope with it.

Sent by chae | 11:04 PM | 6-10-2008

My daughter is 4 years old and has been diagnosed as PDD-NOS since age 2. She is very high functioning, verbal, related, talented musically, and a loving, affectionate kid. She also has extreme sensory sensitivities and has difficulty communicating functionally and socially. This not only effects her ability to learn, and make friends, but her ability to like herself, to enjoy many things outside the home, and feel confident. It has led to behaviors that are simply survival skills rather than 'spectrum' behaviors including an unwillingness to try anything new for fear that she may fail, like buttoning a button.

I think an element missing from this discussion is how these children can grow up to be functional adults like Ari. It doesn't necessarily just happen, it takes alot of work, and sometimes it doesn't happen. Parents and caregivers, and the individuals themselves, must undergo an enormous amount of therapy, diets, supplements, detox, money and tears. Sometimes these things help, and sometimes they don't. Parents of children with autism get alot of criticism for wanting to 'fix' their children because they are not 'normal'. I think many parents, like myself, just want to help their children to be functional. Think about that word. It has nothing to do with being like other children. It means to be able to function in every day life. My daughter is in so much pain and lives with so much fear that she cannot function. One of the books that I read on sensory processing disorder (commonly diagnosed along with autism spectrum) compare how a child with hypersensitivity may feel with the feeling you have when awoken in the middle of the night by a loud sound...how you strain with every fiber of your being to listen to what may come next, hoping it will be familiar, and your heart is beating and your breathing is ragged. Now in the complete darkness, someone touches you. That is how she feels all the time. Not every child on the spectrum feels like this. But my daughter does. Perhaps some successful adults living with autism felt this anxiety and fearfulness at a young age too, and have forgotten. I think expecting society, and certainly our educational system, to accept people and their differences is absolutely necessary. However, to suggest that we as parents, siblings, friends, and society as a whole should not try to 'fix' or 'heal' autism is an injustice to all of those children who can't live in our world, no matter how accepting we are.

Sent by elizabeth bicknell | 9:57 PM | 7-24-2008