Autism Hub at USD and on NPR

25 Jun

Under the care of Dave Seidel and HollywoodJaded, the Autism Hub has gone from strength to strength. They are to be massively congratulated for all that the Hub has become.

However, two other people have driven the Hub into new areas this past year. These two people have demonstrated both singly and jointly exactly the ethos I hoped the Hub would have. Parents and autistic people speaking together.

One of the key areas Steve and Bev have worked in is getting the Hub to an academic audience and a public audience. Steve has worked tirelessly to arrange not one, but two Autism Hub based presentations to an academic audience. I’ve blogged it already but the University of San Diego is currently holding a conference at which Autism Hub bloggers are taking a large part.

Autism Hub at USD

Also on this issue, Steve and Bev appeared on National Public Radio station KPBS show ‘These Days’ to talk about the USD conference and the Autism Hub.

You can listen to the show in MP3 format. Bev and Steve do a fantastic job and it was great to hear the personification of the main idea behind the Hub (that of autistic person and parent to autistic people speaking together).

I wanted to offer a hearttfelt thank you to Steve and Bev for doing all that they have. It really does matter and it really is important. Thank you.

21 Responses to “Autism Hub at USD and on NPR”

  1. suzanne June 25, 2008 at 14:17 #

    This is SO wonderful! Thank you NPR, Steve and Bev. YAY!!

  2. Another Voice June 25, 2008 at 14:23 #

    Yes, it is an important message, one of respect.

    This is an enduring message that needs to be reinforced by the autism community and society in general.

    They deserve a warm “Thank You”!

  3. Bev June 25, 2008 at 14:50 #

    Thanks, Kev. That means a lot to me. Radio is not my preferred medium, but I think it went not too badly. All of us here are very much aware of your own role in starting the Hub, and how important this has been in spreading the word that autistic people are valuable members of society.

    I wish you could have been here, and hope that you will if we have an opportunity like this in the future. Many thanks to you, Kev, for making this possible.

  4. alyric June 25, 2008 at 16:44 #

    Thanks Bev and Steve! I think you handled the interview with aplomb. At least now people may get the idea that ‘neurodiversity’ is a nuanced concept and not the hatchet version of Autism Speaks or our friend Doherty.

    Loved that southern accent Bev. Well that’s what it sounded like to this alien ear and you did a great job even if radio is not your preferred medium.

  5. Socrates June 25, 2008 at 16:49 #

    Thanks all round…

  6. Club 166 June 25, 2008 at 17:16 #

    I heartily second Kev’s thanks and congratulations (as well as Bev’s thanks to Kev for all the hard work he did getting this all started and nurturing it).

    As I’ve commented before, I think that it’s great that the Autism Hub exists, and there is a lot of good that is done just by having all of these opinions out there on the web.

    But I think the greatest strength of the Hub is when it spawns spillover into other media, whether that be letter writing campaigns to shut down offensive advertising, presentations in academic settings, or appearances in the mass media. All of these “offshoots” magnify the message to a much larger audience that would never have heard it otherwise. A secondary effect is that I am sure many of those thus exposed then come visit the Hub, and find even more things to ponder.

    Joe

  7. Club 166 June 25, 2008 at 17:59 #

    p.s. I just listened to the radio show (you have to click on the little microphone at the top of the linked page).

    Great job done by both Steve and Bev. Their comments complemented each other very well.

    Joe

  8. Club 166 June 25, 2008 at 18:12 #

    Whoops! They’re headphones, not a microphone. Click on the headphones where it says “Listen”.

    Joe

  9. Ed June 25, 2008 at 20:01 #

    Thanks to you Kev, as well as everyone presenting at the conference.

  10. kristina June 26, 2008 at 00:25 #

    This is too exciting! Maybe someday we could have a Hub conference for us folks out east….

  11. Steve D June 26, 2008 at 04:24 #

    Kev –
    It was an honor and a pleasure to represent this great community. Bev is a true friend, and is helping pave the way for a better future for all our kids.
    I’ll write about it soon, and I expect the other participants will as well. Today’s presentation and ensuing Q&A was one of the most remarkable things I have been a part of. It was, in a word, meaningful.

  12. Estee Klar-Wolfond June 26, 2008 at 04:54 #

    Thanks Kev. It has been an incredible experience being here and we missed you so much.

    Yes, Steve did a terrific job in pulling us together. Bev is an incredible and a brilliant presenter. Camille is sweet and brilliant as well and James needs to go into inspirational public speaking as far as I’m concerned!!

    BUT we never might have gotten together without THE HUB.

    We love ya, Kev!

  13. Sullivan June 26, 2008 at 05:11 #

    Thanks Steve–

    so much effort gets sapped away countering bad science (and really bad policy) that often the real message gets lost–

    Acceptance of people’s differences and society’s responsibility to give support.

  14. Do'C June 26, 2008 at 07:05 #

    Kev,

    I can’t tell you what a pleasure it was to be part of the team presenting at USD today. What a most excellent group of thoughtful people (USD’s San Diego Autism Institute, the Hub bloggers, and the entire audience). I really with you could have been here.

  15. Tammra June 26, 2008 at 15:11 #

    I wanted to thank all the presenters who shared their knowlegde and perspectives at the USD Autism conference this week. It was a privilege to be there and I have already begun sharing what I learned from you especially about the misconception of vaccines and the “epidemic” of autism.

  16. mike stanton June 26, 2008 at 21:28 #

    Ok Kev
    when can we sort out a gig for the UK Hubbers?

  17. Socrates June 26, 2008 at 21:41 #

    I’ll second Mike’s idea. Somewhere central?

  18. Ms. Clark June 26, 2008 at 22:29 #

    I had a great time. Kev, you were credited right and left and we expressed appreciation for you and the Hub a few times in our presentations. I played the Dear Dr. Kartzinel video and got all teary over it.
    http://autismdiva.blogspot.com/2007/10/jerry-kartzinel-and-lying-about-nature.html
    The video and text of it are available on my blog.

    I cried when showed Katie McCarron’s photo and read her Grandfather’s open letter that thanked the hub bloggers for what we do.

    I’ll quote it here so no one misses it:

    “An open letter to members of the Autism Hub.

    I wish to thank each of you for your words; both about Katie and about people with special needs in general. In a world where differences easily become reasons to devalue people, your words have always conveyed respect, dignity and love for those with special needs.

    I know that each of you from time to time question if you should express yourself and wonder if you are making a difference. Your opinions and descriptions of your travels in life have made a big difference to one grandfather and I suspect to many other parents.

    In the days following my granddaughter’s death I was very upset. As I read comments from autism “advocates”, I moved from upset into anger. Many wanted to twist what happened to fit into their own agendas. All of you know the dialogue. I began to feel that all reason and common decency had been beaten out of society and replaced with hysterical and illogical screaming. Every time I would read some “advocate” say they could understand how a person could kill a child with autism I would bristle and await their self serving monologue of martyrdom. I even viewed a film clip that turned my stomach but it was receiving wide acclaim.

    Then I encountered a different film, one of a little girl bouncing on a trampoline and I met Kevin. Next I found Kristina and the rest of your sites followed at different times mostly by reference from one of these two. During the extremely long trial process of twenty months I have visited your sites, some almost daily. Sometimes I would comment under a pseudonym but most of the time I just read and drew strength from your thoughts and your love. My interest in your posts varied by topic but I was always gratified and reassured by the love you expressed for your children and the respect shown for all people with differences.

    I have had the pleasure of meeting some of you in person, I have corresponded with some of you, and still others I know only through your words on the internet. But words are so vitally important. The words used by some are frightening, intended solely for shock value, but are very divisive in the long term. Every time an “advocate” classifies autism as a fate worse than death they not only display the weakness of their own mind, but they do a terrible disservice to every autistic person. Your words and posts, firmly grounded in respect and love, foster the understanding needed for social movement toward improvement.

    I sincerely hope that parents new to the autism community encounter the hub and your sites long before visiting many others. I find it strange to recommend sites that value human dignity; every site should, but too many don’t. That is what makes your sites so valuable. It seems that autism falls prey to every kind of con artist, they need to be exposed. It also seems that anything can be said about people with autism if the person saying it claims it was done to create awareness, they need to be set straight. Please continue to lead by example, do it as time permits but do what you can and what you already do so very well.

    Sincerely,

    Mike McCarron”

    https://leftbrainrightbrain.co.uk/?p=698

    I laughed a lot, too.

    DoC was fantastic, very personable and funny (and smart). He showed graphs that demonstrated no evidence of an autism epidemic using the IDEA data in a very straightforward way.

    We made jokes about Big Pharma and enjoyed the fact that no one in the audience knew that we had been wrongly accused of being paid to blog by big pharma.

    Bev said in her last talk (sarcastically) that the 5 hub bloggers who were speaking at the conference, were in fact each writing 15 different blogs under assumed names (accounting for all of the hub blogs).

    I said, “Yes, but we are paid really well.”

    🙂

    I spoke about bias, stigma and stereotyping and asked the audience to think how they might be affecting autistic people.

    DoC said I looked, “academic”. 🙂

  19. Ms. Clark June 26, 2008 at 22:40 #

    I should add that all the hub bloggers were fantastic and I appreciate the work Steve D did to get us booked to speak at the conference.

    We are all waiting for our bonus checks from Big Pharma now. 🙂

    There was a mom in the audience who said she’d never done such a mental about-face so quickly about anything in her whole life… learning to look at autism differently.

    That was a high-point for me.

    Also, one of the professors at USD says that her hairdresser is a big fan of Autism Diva blog. Who knew?

    We explained a little about Kathleen’s subpoena problems and how Cliffy was sanctioned.

    Someone there gave me a copy of a $cientology magazine that seems to be meant for really good $cientologi$ts called, Source. It has all these articles that encourage people to go to “Flag” and take classes so they can become “Clear” or even “Operating Thetans”.

    It put Jenny McCarthy’s recent comments about how she gets her information from “source” in a new light. 🙂

  20. Kev June 27, 2008 at 08:17 #

    Thank you everyone. I’m so glad this was the deserved success it was. Dave and HJ have done a great job of taking the Hub forward and this sounds like the fruits of their labour paying off.

  21. Ms. Clark June 27, 2008 at 09:11 #

    I’m not sure if Dave and HJ got as many accolades as they deserve, now that I think about it…

    I hope that whoever represents the Hub again (assuming there will be another conference presentation like that one) will make sure to also thank Dave and HJ profusely.

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