Diagnosis Musings and an Interview with the Frowners

Published February 02, 2009 @ 04:00PM PT

head and shoulders photo portrait of Emanuel Frowner, a young African American man with short hair An interview with change.org member Emanuel Frowner and his family aired on WNYC's Radiolab in December. The radio interview is embedded below; to play the broadcast from its source page, see The Frowners about half way down the page. (I was not able to find a transcript for this broadcast and suspect one may not exist--boo for lousy accessibility!)

This is a sweet little interview that's just neat to listen to, and I smiled more than once during it. It also brings up some (to me anyway) really interesting questions about diagnosis--how it can hurt, how it can help, and how it can change lives for the better.

I confess to feeling more than a little kinship with Emanuel's story; my own story is in some ways similar. And because of that, I too have explored many of the same questions that were brought up in the interview. What did I gain from not being diagnosed as a child (back when dirt was young)--and what did I lose? Considering when I was a child, if I'd been diagnosed at the time I most certainly would have at the very least been denied an education, and, well, that would have been that. But a lot of bad came from not knowing too, both psychological damage and real survival risks that would have been avoided if I'd had proper support. It would have been good for me if I'd been able to find "my people" sooner too.

Today some things are different from when I was a child, or from when Emanuel was a child. Today there are some better educational opportunities for people on the spectrum (including options for school from home). But there are a lot of the same old problems too. Diagnostic labels can be used to crush our potential just as easily as they can be used to help us realize our potential. The world is still not very safe for those of us who are very different. Let's keep working together to fix those problems.

Thank you to Emanuel for alerting me to the interview, and to Emanuel and his family for sharing their story.

Photo from the WNYC Radiolab source page

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Comments (6)

Wow - that was a little hard for me to listen to. I'm a parent of two children on the spectrum, ages 5 and 2 (although obviously with my son we're still sorting things out, it appears to me that he most likely has appraxia - sp?).

I'm trying to literally get everything I can for them services-wise, while beating the drum that this is something that does. not. limit. their. potential.

It's no easy trick, especially when dealing with some folks whose knowledge of autism is less than mine. I believe that there were several members of my family who were on the spectrum but never diagnosed - they were always considered by family members to be more "math people" than "language people"...obviously my knowledge has increased from that, but the mindset that this is just a part of who this person is, with its own set of pluses and minuses, hasn't changed.

It's hard to see the labels already being assigned, the pre-judging already coming out.

Just found this site and I'm glad I did. Thanks for the diary.

Posted by Jen Quirk on 02/02/2009 @ 05:56PM PT
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Hi Jen, welcome!

Posted by Dora Raymaker on 02/02/2009 @ 06:04PM PT
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Thanks :-)

Posted by Jen Quirk on 02/02/2009 @ 06:08PM PT
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Maybe someone could bootleg a transcript by running the audio broadcast through speech-to-text software like NaturallySpeaking. (Sorry, I don't have it.)

Amazingly, for someone with a geek quotient high enough to figure that out, I have not worked in IT in nearly a decade.

Posted by Mark Romoser on 02/02/2009 @ 06:26PM PT
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Long ago in a galaxy far, far away, I had a job as a transcriptionist. Despite having pretty major problems with processing meaning from spoken word, I am really good at transcribing it and really loved that job. So every time there's a broadcast with no transcript, I have a terrible temptation to bootleg a transcript myself in memory of my transcriptionist glory days--

Ah, would that I had *more time*...

Posted by Dora Raymaker on 02/02/2009 @ 07:01PM PT
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Oh yes I was just pondering the other day how sometimes I wish I had been diagnosed younger (as so much of my difficulties/differences got blamed on willful misbehavior and/or "attention seeking" even when all I wanted was to *avoid* attention!) and other times I figure it is probably good that I wasn't (as there were a few members of my extended family who wanted to have me institutionalized as it was...).

At this point I am glad I know more about what is going on in my brain and having a dx (I was dxed officially on the spectrum in 2005) has helped me in terms of certain work-related things, in addition to the fact that the AS diagnosis replaced a bunch of old and innacurate misdiagnoses that were sometimes causing doctors to treat me in ways that were inappropriate as to how I actually operated.

Posted by Anne Corwin on 02/02/2009 @ 09:59PM PT
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Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.