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    « Age of Autism Comment of the Week 10/31 | Main | NIH's Dr. Francis Collins Gives the Game Away on Autism. »

    November 01, 2009

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    Kent

    Want to make Autism Awareness a success? Ask the participants to march on the Judge Rotenberg Center and ask that it be closed down.

    Allison

    Jake, Thank you! I can't wait to see the schedule. Please let me know if there is anything I can do to help, I'm in Andover about 1/2 hour away. I also want to know if I can bring the kids on Wednesday, it's veteran's day and they have it off. Thanks...chapnalli@comcast.net

    Dawn Cobak

    Hi Jake, I was wondering if you'd be willing to allow my non-profit, ironically named For Jake's Sake, to be a part of Autism Awareness Week at Brandeis. Jake is my 6 year old son and he has autism. I started this non-profit to provide parents with funding for therapies they may not be able to afford. Therapies are extremely expensive and most are not covered by health insurance. I know that many colleges groups support different non-profits, and my non-profit is always in need of more publicity, both for fundraising and for families needing the funds. If there is anything I can do on Nov. 9-11 at Brandeis to promote autism awareness, please let me know. I would love to be a part of Autism Awareness Week in any way you see fit. Please visit my website at www.forjakessake.org.
    Thanks so much, this is a wonderful thing you are doing!
    - Dawn Cobak

    Elise

    I owuld make sure you have other people thatn those who follow the biomed and vaccine as cause theories. There is a wide variety of opinions about autism, its causes and its therapies and those should be represented.

    You should also have several epolewho have aspergers who have become productive members of society and those that even go to college. I bet you can find a few at Brandeis.

    I think the message you should untlimately send this week is one of tolerance. There aremany differnt levels of autism and those in the audience should eb aware that the person in theoffice, next to them in class or even their roommate may have ASD.

    BTW not all persons with ASD want to be changed. That shoudl also be discussed.

    Cherry Sperlin Misra

    Hello, Benedetta, ! This reminds me- I have wanted to ask this for so long. Parents of autistic kids, please weigh in on this- I have noticed that most if not all boys in my nursery school, with autism or some minor symptoms related to autism, prefer the colours blue, black and purple- sometimes bordering on obsession. Could this be a universal trait. Could it be true for boys who have only epilepsy and no autism?

    Cherry Sperlin Misra

    Jake, my choice is to have someone read out the story of Charlie - or have two people do it as a dramatic conversation. Charlie's words were published in AOA about 6-8 months back Charlie tells what it is like to have pain in the gut and seizures in the head. You could blow up the photo of Charlie for a back drop and have someone do a drawing of a brain with boxing gloves (Charlie drew that himself to illustrate how he felt)

    Gatogorra

    Thanks Jake. Um, no, I don't think the kids could sit quietly. Some events are more or less prepared for that scenario, others aren't equipped, it all depends. That's part of the problem of autism parents making it to autism events but I'll see if we can't round up some help for that time. The whole thing sounds excellent.

    Jake Crosby

    @Gatogorra: Yes, I'll be speaking at the personal experiences panel, more of an informal round-table discussion really. Another student with an ASD who I've been coordinating these events with will also be speaking there, too, as well as parents of autistic children. You would be more than welcome to come and bring your kids, assuming they can sit quietly through the event and not be disruptive, as kids can have such tendencies...

    Benedetta

    it just so happens that November is also epilepsy awareness month too!
    How convenient!
    The color of the ribbon for epilepsy is purple.
    I guess autism still is keeping that puzzle piece ribbon?

    Maybe I can get me a ribbon with has puzzle pieces made up of different shades of purple.

    Jake Crosby

    We invited a gastroenterologist.

    poop watcher

    "I’d welcome any feedback on how to make Autism Awareness Week at Brandeis the most productive it can be, and would especially appreciate attendance by as many people who will be able to conveniently make it to campus during those days as possible."

    I'd lift some graphic poop and inner gut pics from the Thoughtful House website. Show kids writhing in pain, pressing their abdomen into furniture/ therapy balls etc. I can send you the pic of poop splattered over the toilet seat.

    You gotta grab their attention and shake them to their core, give them something to remember, something they aren't ever going to forget their entire lives. Autism is more than the musical savant or the gifted artist or even the quirky socially awkward acne covered teen. Gotta make it a real enriching special, from the "inside" out.

    nhokkanen

    Thanks, Jake, for posting this event notice; I look forward to hearing a follow-up. I'd suggest collecting e-mail addresses and other contact information from as many attendees as possible. Grassroots networking is essential for combating corporate media interests.

    cmo

    A bit off topic but...

    Do I understand correctly that the government gave out about 1 billion for H1N1 vaccine production, and then another 4 or 5 billion to the media to promote the program ???

    Which means the news is "getting paid" to provide the endless hype ?

    Gatogorra

    Jake, this is fantastic. Will you be speaking? Is it okay to bring kids?

    I can't find anything on the web on the event-- I may be looking under the wrong search terms. I hope the schedule will get posted at some point.

    Maurine Meleck

    Maybe you can get a hold of Lina Moreco's "Shots in the Dark" documentary in English to show. It's very good.
    Maurine

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