RACHEL MARTIN, host: OK, listen to this. As many as one in 150 American children has been diagnosed with an autism spectrum disorder. And as autism and its related disorders have affected so many families in the United States, they have, not surprisingly, come up with a variety of responses, including the so-called Autism Rights Movement.
Its proponents, many of them on the spectrum themselves, want us to look at autism in a new way, and not as a disease that needs a cure. Last week, Andrew Solomon wrote a long story in New York Magazine about the movement, and so we thought time for another edition of the BPP's Ripped Off...
(Soundbite of Law & Order theme)
MARTIN: From the Headlines. I spoke to 20-year-old Ari Ne'eman who has Asperger's syndrome, and is the president of the Autistic Self Advocacy Network. He talked about a series of ads put out by the NYU Child Studies Center last year that, for him, encapsulated the wrong way of thinking about autism.
(Soundbite of reverse playback)
Mr. ARI NE'EMAN (President, Autistic Self Advocacy Network): The ads consisted of a series of phony ransom notes, each one claiming to be from a particular disability that had supposedly kidnapped a child. To give you an example, for instance, the one about ADHD said, we have your child. We'll make him fidget and squirm until he is a detriment to himself and everyone around him. Signed, ADHD.
And there was one about autism, and one about Asperger's which spoke, we will make him completely socially isolated and never able to care for himself, or something to that effect. And we found these ads extremely offensive...
Mr. NE'EMAN: Because they reinforce perceptions of people with disabilities as not being full people, being somehow kidnapped, not fully present in our own bodies. And as a result, we've launched a very comprehensive response campaign. I'm glad to say we managed to get these ads withdrawn.
MARTIN: And what is the mission, the larger mission, of the Autistic Self Advocacy Network?
Mr. NE'EMAN: Well, our - as an organization, I think, in many respects, we're unique, in that we're one of the few organizations that represent autistic people ourselves, rather than parents or professionals. One of the mottos that we share with the larger disability rights movement is, "nothing about us, without us." People are talking about us, or making policy about us, or conducting research about us. We think we have a right to be involved.
MARTIN: And I've noticed that you do use the term "disability." You characterize autism as a disability?
Mr. NE'EMAN: Well, yes, Rachel. We're disabled by society. I think that's something that a lot of people don't understand. We don't consider ourselves as having a disease, but what disables us is, for instance, an educational system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in the community, or succeed in any number of other things. I think the ransom-note ads, which portrayed an incredibly bleak, negative, deficit-oriented picture, are good examples of some of the societal prejudices that I'm speaking about.
MARTIN: As the article states, autism exists on a spectrum, right? There are people - and maybe this is where a lot of the stereotypes come from, and these concerns that people with autism or Asperger's can't function in societies, because there are - for some people, on one end of that spectrum, that's true, right?
Mr. NE'EMAN: You know, yes, it's true, that the autism spectrum is incredibly diverse. We have a saying, when you know one person on the spectrum, you know one person on the spectrum. And some people are more in line with what the stereotypical depiction is than others, but to characterize somebody as, quote, unquote, "low functioning," can become a very self-fulfilling prophecy.
Mr. NE'EMAN: Because somebody is unable to communicate right now, it's assumed that they will never be able to communicate, and they don't receive the education and the support that enable them to move forward and to progress on a personal level. So I think one of the things that we want to see is we want to see a removal of the stigma from the label of the autism spectrum, but we very much see it as part of our identity, I think, similar to how you would characterize as part of your identity being a woman, or someone African-American may characterize that as being part of their identity.
MARTIN: So, you're essentially proud of being autistic?
Mr. NE'EMAN: Yes. I think that's a reasonable characterization. We are proud of who we are. We are proud of the community that we are building, and we want to see a broader systems change to ensure that everybody in our community has the opportunity for communication and for quality of life.
MARTIN: What do you say to people who suggest that perhaps you should try harder to be, "cured," quote, unquote, that if given a choice, clearly, you would prefer to not be autistic?
Mr. NE'EMAN: Well, I think that that's an unfortunate perspective. There are no - and I don't believe there really ever could be a magic pill that would make us normal, and if there was, I know that I and many others like me would not take it. It concerns...
MARTIN: That's interesting. Why? Why not?
MR. NE'EMAN: Well, because it's part of who we are, and I think there's something deeply unethical, and as practical matter, very troubling with rewiring the fundamental aspects of how somebody thinks and perceives the world.
MARTIN: We talk about some of the difficulty in dealing with that stigma. A lot of that comes out of the public education system. If autism is - exists on a spectrum, and there are people within that spectrum who suffer from varying degrees of the disability, how does the public education system deal with that?
Mr. NE'EMAN: Well...
MARTIN: Or maybe they're not dealing with it?
(Soundbite of laughter)
Mr. NE'EMAN: When I was in school, I was sent for a number of years into a segregated special-education school, where the assumption was that people like me would not be able to, you know, hold a high-level job, or to go to college, or to succeed at the same level as somebody who is considered normal. If we have a segregated educational system, I think that's going to lead to a segregated society. And if people growing up don't see people of a wide diversity of neurologies and have them in their classroom and understand that, then it's going to be very hard for - as we grow to be adults, for us to have the kind of mutual understanding and acceptance that we require.
MARTIN: And you mention that term, "neurodiversity." Is that something that your organization coined? Or has that been around?
Mr. NE'EMAN: Well, it's something that originated in the autistic community, and it basically is an idea we're very supportive of, that states that we should apply the same concept of legitimacy that we've applied to race, religion, gender, sexual orientation and so on to neurology, to apply that kind of civil-rights model to our community as well, and instead of working to try and "cure" autistic people, to instead work to meet our needs, educationally through the right services and supports, and through broader societal acceptance.
MARTIN: One of the stereotypes of people who suffer from autism is a kind of emotional numbness. Can you speak to that?
Mr. NE'EMAN: I think that that's an unfortunate stereotype and an inaccurate one, and what it comes down to is, because our communication styles are often not recognized, and whether that's having difficulty understanding when you're using subtle, nonverbal communication, or whether that's needing a keyboard to communicate rather than communicating through voice, there's an assumption that, you know, we're not fully there. One of the most damaging stereotypes that's been associated is that autism somehow steals a normal child and places an emotionally numb, autistic child or adult in their place.
MARTIN: And parents end up grieving that. They grieve the loss of that idea of what their child was supposed to be.
Mr. NE'EMAN: Exactly, and I think that that's a very concerning thing when that kind of grieving doesn't stop and parents don't see the very real child, and I should stress, also adults, because autistic people are also adults, not just children...
Mr. NE'EMAN: But the very real child that is with them and not the child that their original preconceptions thought would be present.
MARTIN: How and when were you diagnosed, may I ask?
Mr. NE'EMAN: When I was 12. It was something that, at first, I didn't know what it was, but as I grew older, I started to connect with other people in the spectrum, and I began to found - find out that there is a very vibrant community of other adults and youth like myself, and that we have ideas and perspectives and really even a culture that many people are quite simply unaware of.
MARTIN: You're in college now?
Mr. NE'EMAN: Yes, I am.
MARTIN: What's a situation in college that you've had where you have been reminded of your disability, when you have thought to yourself, oh, I am different than these people?
Mr. NE'EMAN: I remember one time when, I think ,for club that I'm involved with, we went all to have our pictures taken, and the room that we were getting our pictures taken in had a light bulb that wasn't working properly, and so it was flickering on and off really fast, and that was actually very aggravating for me, sensorially speaking, and I, you know, I actually had to leave the room where we were waiting for pictures to be taken because of that, and that was, you know, definitely something that certainly reminded me of the more disabling aspects of it.
MARTIN: If someone were to say to you, Ari, how do you know what you're missing? You were born this way. You say you don't want to be cured, but that's - how can you know that, because you don't know life any other way?
Mr. NE'EMAN: Well, I think that that's a somewhat - well, you know, I would imagine that a member of any other minority group, you know, African-American person doesn't know what it's like to be white, a gay person doesn't know what it's like to be straight, or any number of other similar things, and I think to characterize it that way, is in many (unintelligible) deeply disrespectful of our perceptions of ourself. I think other people assuming they know more about our lives than we do is something that's very offensive, and it's the source of a lot of problems for us.
MARTIN: Ari Ne'eman is the president of the Autistic Self Advocacy Network. He joined me from our studios in Washington, D.C. Ari, thank you so much for your time. We appreciate it.
Mr. NE'EMAN: Well, thank you, Rachel.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.