In the Autism World, Does Biggest Mean Best?
Ginger Taylor at Adventures in Autism Called Gerberding Move Months Ago

Autism Awareness Week at Brandeis: A Great Success!

Jake's photo By Jake Crosby

I have been wanting to write about this for over a month now, but my course load was simply unforgiving! I finally got my big break to write about Autism Awareness Week when the semester ended.

As project manager of panel and roundtable discussions, half of the major events for Autism Awareness Week, it is a great honor for me to state that the week went well. I raised $50 for Age of Autism, and all with a “thank you” jar, a display of articles stapled and taped to a cardboard box, and a sample collection of articles from the web newspaper, one by parent Lindy Rupp, another by Michael Thomas, who has Asperger Syndrome, and of course, an article by our venerable editor, Dan Olmsted. I think I did considerably well given that I got “out-gunned” as Mark Blaxill would put it, by the Autism Speaks table, armed with their intimidating puzzle-piece banners and vast array of pamphlets. I also had the bake-sale to compete with, though I helped out with it so I was able to direct the customers’ attention towards all the great work Age of Autism has been doing. That really helped with donations. I am content with what I made for AoA, and grateful to all those who gave, most of them fellow students.
 
Money aside, I was very glad with how all the events turned out. Unfortunately, I was unable to attend the African Dance Performance because I had class, but I’m sure it was amazing. Lots of people attended the Medical Discussion Panel. It was the most highly attended event I was present for. The chair of Autism Awareness Week, Emily Griffin, estimated that 60 people were in attendance. I could not have pulled it off without her, in fact, none of Autism Awareness Week here at Brandeis would have been possible were it not for her. Many thanks to you, Em, for making this all possible!

Another key person who really made AAW great was Mihai Dinulescu, a senior at Harvard and our off-campus liaison. His performance at the event with moderating the panel discussions and introducing the speakers was very impressive. I was amazed at how quickly he had educated himself on the facts and how well he spoke in front of a whole audience of people. All the prior experience he had in planning student events had really shown through.
 
Who I would most like to thank is our guest speakers, who truly made the events come to life. Professor Martha Herbert of Harvard University and MassGeneral Hospital was superb, and delivered an amazing, yet frightening, overview of the extent of the many changes in the environment and the implications it may have on the autism rates. She gave an absolutely knock out presentation that was better than anything I had ever anticipated. I was shocked to learn of the thousands of chemicals that had not been adequately tested for neurodevelopmental dysfunction, and enjoyed her analogy of society in general to severe autism in how we are engaging in a repeating act of self-injury with all the harmful pollutants we create for ourselves. I think if anyone deserves the Age of Autism award for doctor of the year, it should be her.



Next up was Professor Elizabeth Sajdel-Sulkowska, professor of biochemistry in the
psychiatry department at the Brigham and Women’s Hospital teaching affiliate of Harvard. She described the results of post-mortem studies she conducted which looked at autistic brains, finding numerous abnormal elevations in biomarkers which suggested linkage to several heavy metals, such as lead, cadmium, and of course, mercury. Aside from the terrific biochemical perspective of the etiologies in autism her presentation delivered, I was happy to find out that Prof. Sajdel-Sulkowska completed her post-doc here at Brandeis. Her speech sure made me feel a lot prouder to be a student at Brandeis University.

After her came Professor Alvaro Pascual-Leone, director of the Berenson-Allen Center for Non-Invasive Brain Stimulation, who delivered an enlightening speech on brain plasticity in autism, and how Transcranial Magnetic Stimulation (TMS) can be a successful treatment for the disorder, and included interesting video-demonstrations of the technique. Some of it was definitely over my head, but I was very interested in learning about how brain plasticity can be both beneficial and harmful. This would almost certainly be an explanation for why some children start developing normally and then develop autism, aside from forming the basis for why TMS has a practical application to autism of course. The talk about treatment definitely gave the event a more positive swing after hearing about the etiologies of autism.
All these Harvard professors were great, and I was especially heartened that they came all the way to Brandeis.
 
However, an invaluable perspective that the panel could never have been without was that of AoA’s very own Mark Blaxill, a graduate of Harvard Business School, who came up and gave his talk about his views on the mercury/vaccine-autism controversy. I had discussed it before with individual students at Brandeis, most of them supportive of what I had to say, but never had I seen such a perspective, largely censored in the mainstream media, delivered to an audience of students before. I was incredibly impressed with how well Mark spoke to the almost entirely undergraduate audience. He spoke very articulately and honestly, summing up the situation very persuasively. It truly highlighted the urgency to bring this issue to the college campus, and not only to Brandeis, but to universities throughout the country. 
 
The next day was the roundtable discussion, where people were invited to come and hear the personal experiences of those affected by autism spectrum disorders. Among those in attendance was loyal Age of Autism reader and occasional contributor Allison Chapman, mother of a 9-year old child with autism. She offered a vibrant perspective as an autism mom. She talked about her day-to-day struggles with helping her son, about her child’s need to be squeezed when other people on the spectrum don’t like to be touched, and about how he is non-verbal, yet can read out loud. Paradoxes like these are not uncommon with autism spectrum disorders, but each one I hear is always unique and interesting to learn more about. One thing is certain, without Ms. Chapman’s contribution, the discussion that day simply would not have been the same. 
 
Another person I was very glad attended was a graduate student with Asperger Syndrome. I could already pretty much guess he had an ASD when he came into the room and shook my hand without giving me eye-contact, then grabbed some food from our makeshift buffet and quietly sat down at the table, remaining silent for the first half of the event. When he did speak, however, it was like a breath of fresh air. He spoke of his Asperger Syndrome, how he was diagnosed with it at a later age, and how it has always caused him to feel lonely and out of touch with other people.  Yet his interest in music and love for playing the piano had helped him to fit in better, even making him, as he put it, “the life of the party” for once. At the end of the discussion, he told me how glad he was to know that he was not the only person with Asperger Syndrome at Brandeis University. 
 
We were also very happy to find a restaurant willing to donate food to the event at the very last minute. While Waltham may have a defunct watch industry, it fortunately has a vibrant array of ethnic restaurants. We are very grateful to the restaurant “Tom Can Cook” for supplying us with great oriental food for the occasion.  
 
That night was the screening of the film “The Horse Boy,” based on the bestselling novel by author Rupert Isaacson. Readers may be familiar with “The Horse Boy” after it had been unnecessarily dumped on in the media by autism hack Paul Offit. The book had been advertised on Age of Autism for some time.

Upon watching “Horse Boy,” I felt the negative press it received was unfair. In fact, the film was excellent. Sections of the it were quite interesting as it showed one family’s trek across Mongolia on horseback. It definitely had its share of challenges, such as the meltdown scenes, but other than that, I was happy to see Rupert Isaacson’s son get better, and as Rupert said himself, that’s all that truly matters anyway. Perhaps most uplifting of all was seeing the boy ride a horse independently at the end of the film.

After the film walked in the real-life Rupert Isaacson, off of the screen and into the room with the audience. While I would not agree with Mr. Isaacson in the Q/A session about autism being merely a “difference,” I was at least glad that his son had apparently been doing well. He was also very acknowledging of the causes of autism, such as mercury and the MMR vaccine, in the recent huge increase in autism. However, while he agreed the major increase in autism was real, at the same time, he felt that autism had always been with humanity, given the relatively short duration of modern medicine, which spans only a century or two.

The next day was the Social Panel Discussion in which we talked about the problems concerning autism and society. Unlike the Harvard-based medical discussion panel, this was very much a homegrown panel.

Our first speaker was Zohar Fuller, who is in my graduating class of 2011 at Brandeis University. She gave a fascinating speech about her work at a theater camp, Drama-Play Connection in Weston, Massachusetts, for children with autism spectrum disorders. I was very pleased to hear that children with ASDs had places such as these to help express themselves creatively without standing out or being stigmatized. It was definitely the sort of program I would have longed for growing up, but never had. As a 21 year old with an autism spectrum disorder, I can say from first-hand experience that nothing like this existed, and I’m glad that younger children with autism have opportunities such as this.

Next up was Guiseppina Chiri, a PhD student of Brandeis University’s Heller School for Social Policy and Management. Guisi is also a fellow of the Lurie Institute for Disability Policy, with expertise on social and disability policies for adults with autism. She spent much of the presentation describing the many different ways society must cope with this new influx of people with autism entering the system. There was so much she had to say about the many obstacles our system will be facing with all these disabled adults entering on SSDI, that for the first time I experienced just how complex a problem this will be, and how foolish it is to simply attribute it all to “better diagnosis.”

Finally, the last speaker was Dr. Karolina LaBreque, a therapeutic horse-riding specialist from T.H.E Farm in Tewksbury, MA. She provided an overview of physiological aspects of horse riding that can have a therapeutic basis, particularly for autism, and offered a very good practical explanation. It was especially appropriate given that just the night before had been the screening of the film “Horse Boy,” about the therapeutic effects horse riding had on Rupert Isaacson’s son. She certainly gave a great explanation for the improvements he gained.

Finally came the screening of the critically acclaimed film “Autism The Musical,” featuring children with varying degrees of autism taking part in an original play. The film was more than just that, however, it also gave insight into the lives of each child and the struggles they have to face. Equally moving were the struggles of the parents in raising their children. After the screening, Autism Awareness Week was declared officially over.

So much was going through my head while the events were happening, but in the end all I could think to myself was “Wow.” For the panel discussions, I was amazed at how many people were vigorously taking notes throughout the presentations. It was very reassuring to see that there were many students interested in this topic.
Ultimately, my involvement with planning Autism Awareness Week has been one of the most rewarding experiences I have ever had in my life. I thank all the members of the Autism Awareness Week Planning Committee, all those who attended the event, who helped us out with the events, spoke at the events, and last but not least my Professor, Peter Conrad, for putting me in touch with Emily Griffin who did an amazing job of chairing the whole event.

A lasting result of my involvement with Autism Awareness Week has been the contacts I have attained to be able to form a new club to bring autism awareness to the Brandeis campus, which I am particularly proud of. I co-founded the club with an attendee of the panel events, Lauren Grewal, who has a severely autistic 15 year-old brother. She came to Brandeis because she wanted to be near him and she really helped me get the club launched. I could not have done it without her, so thank you Lauren for your unceasing commitment. We are now a recognized student organization at Brandeis, with the name “SPECTRUM,” which stands for Support, Progress, Empowerment, Communication, Trust, Respect, Understanding, and Motivation. It’s an all-welcoming club for people with autism spectrum disorders, their siblings, their classmates and anyone else interested in the condition.

I would finally like to extend my thanks to Age of Autism for helping me spread awareness about this successful event. It would not have been the same without AoA.

Jake Crosby is a history student with Asperger Syndrome at Brandeis University, a proud contributing editor to Age of Autism, and equally proud to have been a project manager for Autism Awareness Week at Brandeis. He is now co-founder of the recognized student-run autism awareness organization, SPECTRUM.

Comments

ELAINE HALL

Dear Jake,

Thank you for coordinating and then reporting on such an amazingly successful conference which raised awareness of autism in so many ways.

I am pleased that Brandeis screened the film AUTISM: The Musical and that it was helpful to better understand the parents as well as the children.

Please let me know if there is any way that I can be helpful to you and your most positive efforts to bring this most essential topic to universities.

Wishing you many miracles,

Elaine Hall, CoachE

Founder of The Miracle Project

Profiled in AUTISM: The Musical

Author, Now I See the Moon (HarperStudio Spring 2010)

Elaine Hall

CoachE!

Founder/The Miracle Project

www.themiracleproject.com

Director/Vista Inspire Program

www.vistadelmar.org

CoachE! in AUTISM: The Musical

Host/Co-Producer/ DVD Series- Unlocking the World of Autism: 7 Keys to Being Miracle Minded with Diane Isaacs

(Concept Media) http://www.conceptmedia.com/WhatsNew.aspx

Author, Now I See The Moon : a mother, a son, a miracle (HarperStudio, Spring 2010) with Elizabeth Kaye

Co-Author, 7 Keys to Unlocking Autism (Jossey Bass, Spring 2011) with Diane Isaacs


Gatogorra

Jake-- You're amazing and I'm sure I'm not alone in feeling grateful that someone so sharp, far-seeing and eloquent is involved in this issue. Please give the heads up next year a month of so in advance so your Mass contingency can show up with bells on and help out in whatever way you require.

chantal Sicile-Kira

Thanks, Jake, for all that you do for the autism community!

Twyla

As I was reading this article I too kept thinking, "Wow!" What a wonderful event! Congratulations on all that you did to make this happen! What a great combination of outside experts and local homegrown sharing and networking. And the new group you have formed sounds great, too.

But, I do have to say that Waltham has somewhat negative connotations for me -- because that's where my orthodontist's office was when I was a kid!

nhokkanen

What an artfully detailed synopsis of an incredibly informative event. Congratulations, Jake, on putting together such an excellent meeting of many minds.

Just another mom

Thanks Jake for your inspiring article. Good news!

dan olmsted

Jake, congrats on putting together what must be one of the most comprehensive and powerful autism events ever held at a college campus, and sharing its many moving parts ("moving" in both senses). this is the kind of intelligent and energetic activism that will create a better future for a lot of people. how you have time to go to school baffles me. -- dan

Teresa Conrick

Great job, Jake and all that helped this happen! Hope to see more events around the country like this.

jen

Wow, Jake!! That sounded like an amazing event! I would love to have attended. You are doing so much to educate and create awareness for the next generation. Thankyou!

Diane

Jake - great event - wish I lived closer to Brandeis! With 1 in 100 kids and unknown adults impacted - we can make an impact one person at a time if needed. It amazing how open youth are - those under 25 for us old foggies (myself included) - many have classmates or relatives impacted - I hope this next generation can help get things right - the current one isn't doing so good. I do see a trend for more caring and selfless - not the greed of prior generations, also a good thing!

Keep telling 'em and writing Jake!

Best wishes!

Darian (nickname)

I'm a first time A of A poster today!

Reminds me of the SEPTA fair we had down in my state in one of my cit's highscool gyms. I was there basicly offering my services and explaining who I was and what I do along with the Educational Coordinator from the Department of Mental Health.

Across from me was a Age of Autism table, with a young mom behind it telling her story. And coming from the state, a word to you parents. Nothing is more impacting to politicans, buisnesses, or professionals than personal stories! It has been my own that has gotten people to actually listen to me and helped me get my job. (I have Asperger's)

I and the lady shared stories and I asked her to be on my Speaker's Buearu I have been building for ages, and I will be sharing info with her in case I know of someone she would like to talk to about autism, or social security, or various services I have a gateway into through my job.

I like this sense of comroderie and working together! I wish that our community in general would set aside the personal attacks, the anger, the hate I've seen spewed on so many blogs and unite when we need to for some common goals all of us in the autism community have!

What ever happened of agreeing to disagree I wonder.

But I'm going off topic. The young woman agreed with me that the complete and absolute lack of adult services for those on the Spectrum is not only appalling, but alarming!

Let me demonstrate how critical this is. We have had the 1 in every 150 number for a long time before the recent increase. That 1 in every 150 are about to graduate, and what is there to support them other than parents? NOTHING!! NADA!!

This is going to be a crisis very quickly! WE NEED ADULT SERVICES AND WE NEEDED THEM YESTERDAY!!!

And from what parents have posted on here, I don't think any of them would disagree with me. All worry about what will happen to thier children when they are gone, no matter where their child is on the Spectrum! And with no supports in sight, THEY SHOULD!!

This would be a common goal to unite on.

I am done ranting. I know I went way off base of the original subject.

Subject being, in raising awareness you all do a wonderful job, and it's my pleasure to have met a representive of yours and I look forward in being able to work with her and parents in raising the awareness and hooking up people with the few resources that I can. And for advocating with them for things I mentioned above.

Maurine Meleck

Congratulations on this fantastic event you pulled off and for giving us all the details.
There are so many events we have to miss unfortunately-not only the travel costs but also the need to be home taking care of our sick children(for me grandchildren). A special thanks to my good friend Allison Chapman for all her hard work and for being there always when I need her.
Maurine Meleck

diana

Thank you for working hard on this event. Should be happening at college campuses across the country.

Allison

Thank you Jake for putting this whole event together. And although I was only able to attend the round table and the showing of "The Horse Boy", the entire day had a profound effect on me. I truely appreciate your insight and the events you shared in your life, as well as the young man with asperger's who shared of his love of music.

Thank you also for the very kind words about my involvement. You really should be very proud of yourself! Congratulations on pulling it all together and with such success.

Happy Holidays and hopefully I will be seeing you over at Brandeis again soon! -Allison Chapman

Benedetta

Jake;
This is great! You have taken me back to my college days when they would have extra events like this. I also enjoyed listening to experts in their fields come and speak to us all.

But none of our events in college were as important to so many people as this one. It sounds like you did one heck of a job! Not only that, but the extra load of actually going to class, keeping up with class work - I am impressed!!!

Someday maybe you could write some articles about your working experience (it maybe painful but informative to the rest of us)
Someday maybe you could write some articles about how college is going too.

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