RE: Evan's response regardin the Penn State questionannaire

[Guest guest]

My dear listmates,I understand the frustration that Evan (and I know many others) feel about funding used for research rather than more pragmatic social and theraputic purposes our children, and all who are effected by Autism so greatly need and deserve. 's List has become an invaluable tool for our community for us to share resources, opinions, frustrations, needs, questions and everything that becomes paramount in our lives. Please know that there are many legitimate programs and institutions that ask for our feedback that may or may not end up helping OUR kids, but hopes to assist future generations. There are also many organizations that suggest they help the Autism community and seem legitimate, but, in my opinion are merely cashing in and creating cottage industries due to the growth in the number of ASD diagnoses. Additionally, there are many organizations that receive grant money and/or donations on behalf of "Autism". What the heck does THAT mean? People mean well by donating to such organizations, but may very well be throwing their money away. Do they research what percentage of their donation goes towards overhead? What EXACTLY does the organization do with the funding? Will the monies either directly or indirectly be helping YOUR family? It was the answers to

those questions that initially got me involved with the Autism Society of Broward. When my son was finally given the accurate diagnosis in kindergarten, I was like a deer in the headlights. I had no idea where to turn. I had no family here in Florida and didn't want to belabor conversations with friends with my sadness, concern and desperation for the future of my son. The people that I met at Autism Society of Broward were amazing to me. Subsequently, I had become a Member of the Board of Directors. The reason I love ASA Broward is because there is NO paid staff, ALL Board members and committee members are volunteers and we all have just one goal: to provide, support, events and a community for us to help each other, family to family. THe funding we do receive from grants, acquired by hard work on the part of individuals on our Board, as well as donations, go into a fund PURELY FOR THE USE OF EVENTS, SUPPORT GROUPS

AND SOCIAL OPPORTUNITIES for all effected by Autism here in Broward. Many of you have participated in and enjoyed Surfing, Golfing Fore Autism (weekly golf lessons for both boys and girls!), Fun in the Field, IEP Workshops and so many other FREE events. Then there is an array programs that we subsidize, like Melody of Life Mom's Luncheons and Yoga. We would so love your participation whether it be for ideas, participation on committees, volunteering your area of expertise and of course those who can offer the dedication neccessary to our Board of Directors. We are here for you. You are welcome to email me directly at forbrooke@..., or go to our webpage at www.asabroward.org to be in touch. As always, I wish you ALL the

strength neccessary to see the beauty in our lives. It is there. Like in the wonderful people who reach out to total strangers to offer support and kindness. You are the best! s Mahler

[Guest guest]

Dear , Evan, and any concerned patrons,

Good day! We (the research team) just wanted to address your concerns about this

research survey. This initial project is intended to determine if children with

ASD engage with video games. We are also interested in gathering information

about the leisure and preferred activities of children with ASD who do not

engage with video games. This study is part of a larger project investigating

how activities that are preferred and motivating to children with ASD can be

used to improve academic performance and social functioning. The study is being

conducted using a small amount of money obtained from the Social Sciences

Research Institute at Penn State University and we are in no way affiliated with

any organization that will profit from the information learned through this

project. Questions or other comments about the project can be directed to the

principal investigators, n Finke, Ph.D., CCC-SLP at enh109@... and

Hickerson, Ph.D. at bdh14@.... You can also click the following

link for some more information about this project: http://aac.psu.edu/?p=925

Thank you for considering this project and for voicing your concerns.