Guest Interviews — 4 Minutes

John Elder Robison: Why ASD is not a ‘problem’

Guest Interviews — 4 Minutes

John Elder Robison: Why ASD is not a ‘problem’

An excerpt from Dr. Gwynette’s full interview with John Elder Robison at the INSAR 2019 conference in Montreal.

John Elder Robison is the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, VA, and one of the founders of the Neurodiversity Program at the school—one of the first of its kind at a major American university. He teaches neurodiversity at the Williamsburg campus and at the Washington DC continuing ed facility. He is an active participant in the ongoing discussion of ethical and legal issues relating to autism therapy, services, and intervention. He is particularly interested in improving quality of life for those people living with autism today—both autistic people and family members. He’s been a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services, and he serves on other boards for the US National Institutes of Health, the Centers for Disease Control, and private organizations. He is also a Professor of Practice in the Department of Education at Bay Path University in Longmeadow, MA, and the co-founder of the TCS Auto Program, a special ed high school program for teens with developmental challenges in Springfield, MA.

Frampton Gwynette: I’m Frampton Gwynette with the Autism News NetWORK here with John Elder Robison from Montreal, Quebec, Canada. John, thanks for being here.

John Elder Robison: Yes, thanks for inviting me to speak with you here at a conference. Yeah.

Frampton Gwynette: Absolutely. For those of you who aren’t familiar, John is a bestselling author. He’s also an international leader in autism advocacy and he sits on multiple national and international organizations.

Frampton Gwynette: He also has his own business, which I definitely want to talk to him about during the course of our discussion. But John, one of the things I saw just in reading in preparation for the interview is that, as one of the leading voices in advocacy for autism, you, and correct me if I’m wrong, but you believe that autism shouldn’t be viewed as a ‘problem’. Can you expand on that?

John Elder Robison: I think that people use language around autism, like the autism crisis or the autism problem, the autism epidemic to present autism as a defect in us. By presenting it in that light, we are made to appear less than other humans.

John Elder Robison: There’s no doubt that autism confers challenges. For some of us, it also confers exceptionality. You could say that disabilities are problems, but that doesn’t mean that autism is a problem or autistic people are a problem. I think that’s the thing that I am careful to point out.

Frampton Gwynette: Yeah, absolutely. More of a focus on what someone can do, not what they cannot do. I work with a lot of patients who have had such a hard time with acceptance in groups, and I think also they have trouble accepting themselves because they’re told from the outside that, “Hey, X, Y and Z or wrong about you, it needs to be fixed.

John Elder Robison: Well, that is really a fundamental problem in our society. An autistic person like me, we all grew up with kids on the playground telling us what they imagined was wrong with us. We were stupid or defective.

John Elder Robison: Autistic kids who had more visible challenges were in some cases tormented even more. We heard that right from the very beginning. Then we had problems in school, problems making friends and at some point someone evaluated us and said, “Well, you have this autism thing.”

John Elder Robison: On one hand it can be an enlightenment and a relief to have a nonjudgmental description for why you’re different. If that comes after a lifetime of being told you’re less than other people, you still suffer a considerable amount of harm beforehand. I think that is a real big societal problem.

Frampton Gwynette: I’m Frampton Gwynette with the Autism News NetWORK here with John Elder Robison from Montreal, Quebec, Canada. John, thanks for being here.

John Elder Robison: Yes, thanks for inviting me to speak with you here at a conference. Yeah.

Frampton Gwynette: Absolutely. For those of you who aren’t familiar, John is a bestselling author. He’s also an international leader in autism advocacy and he sits on multiple national and international organizations.

Frampton Gwynette: He also has his own business, which I definitely want to talk to him about during the course of our discussion. But John, one of the things I saw just in reading in preparation for the interview is that, as one of the leading voices in advocacy for autism, you, and correct me if I’m wrong, but you believe that autism shouldn’t be viewed as a ‘problem’. Can you expand on that?

John Elder Robison: I think that people use language around autism, like the autism crisis or the autism problem, the autism epidemic to present autism as a defect in us. By presenting it in that light, we are made to appear less than other humans.

John Elder Robison: There’s no doubt that autism confers challenges. For some of us, it also confers exceptionality. You could say that disabilities are problems, but that doesn’t mean that autism is a problem or autistic people are a problem. I think that’s the thing that I am careful to point out.

Frampton Gwynette: Yeah, absolutely. More of a focus on what someone can do, not what they cannot do. I work with a lot of patients who have had such a hard time with acceptance in groups, and I think also they have trouble accepting themselves because they’re told from the outside that, “Hey, X, Y and Z or wrong about you, it needs to be fixed.

John Elder Robison: Well, that is really a fundamental problem in our society. An autistic person like me, we all grew up with kids on the playground telling us what they imagined was wrong with us. We were stupid or defective.

John Elder Robison: Autistic kids who had more visible challenges were in some cases tormented even more. We heard that right from the very beginning. Then we had problems in school, problems making friends and at some point someone evaluated us and said, “Well, you have this autism thing.”

John Elder Robison: On one hand it can be an enlightenment and a relief to have a nonjudgmental description for why you’re different. If that comes after a lifetime of being told you’re less than other people, you still suffer a considerable amount of harm beforehand. I think that is a real big societal problem.

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