Friday, September 18, 2015

Listen… and Help Others Hear

We lack diversity in the autism community.

Think about what you see, online and in the media. I see upper-middle class parents, able to afford iPads and tutors and official diagnoses. I see parents who have the resources to fight for IEPs and physical accommodations.

I see self-advocacy leadership that has been fortunate (and hard working, certainly) to attend universities, travel the nation (or even internationally), and have forums that reach thousands.

What I don't see? Most of our actual community. The real community that represents autism's downsides. The marginalized communities, ignored and excluded from our boards, our commissions, our business networks.

How did my lower-income parents, without college educations, give me a chance to be more? How did they fight the odds? They did, and now I am in a position of privilege. But I don't seem to be making much of a difference.

Demand that your charities seek out the broadest possible array of advisers and board members. Remember, much like our schools, your community is nothing like some other communities. From my nice exurb, I can forget what inner-city and poor rural schools are like. I can forget what parents without means have to fight every day. Coming from a 72% Hispanic community, with Hispanic leadership at all levels, I can forget what it is to have minority voices silenced.

Remind yourself, there are voices with experiences unlike yours or mine. We need those voices in leadership positions. Don't make excuses. Reach out and add those people to committees and boards. Involved them. Make allowances for their special needs and socioeconomic situations, too. If you have to find ways to help someone be heard… then find those things you can do.

Don't make excuses. Make change.

Saturday, September 5, 2015

CUNY Research: Autistic Adults and Foodways

I am posting this by request, to help a doctoral student.


Hello,

My name is Jungja Park Cardoso and I am a Ph.D. candidate in the environmental psychology program at the Graduate Center of the City University of New York.

I’m seeking participants for my dissertation research that investigates how autistic adults with different conceptions of autism negotiate and navigate the food environment in the US. I’m particularly interested in learning about how certain environmental settings and situations are considered problematic or supportive in relation to everyday foodways - the beliefs and practices involved in growing food, going grocery shopping, cooking and eating food. All information that is collected about participants will be kept confidential. Participants will be entered into a raffle to win one of twenty $25 e-Gift Cards. Once I have completed my study, I will share an electronic copy of my research findings with research participants.

The research consists of two phases:

1) Online Survey and

2) Online Interview or offline Interview.

Your participation will contribute to a greater understanding of a food environment that is friendly to autistic adults.

This study has been reviewed and approved by the City University of New York Institutional Review Board (IRB). (Protocol #: 2015-0724)

If you (or someone you know) are interested in learning more about this study, please contact me:

Jungja Park Cardoso
E-mail: JPark1 @ gc.cuny.edu
Or visit https://survey.gc.cuny.edu/s?s=3797


(I apologize in advance if you feel disrespected because I use the term “adults on the autism spectrum” instead of “autistic adults” or “adults with autism” in the survey. The survey is designed for individuals with different understandings of autism. I’ve tried to choose a more neutral term to the best of my knowledge.)


Thank you in advance for your time and consideration.

Sincerely,
Jungja Park Cardoso
Ph.D. candidate, Environmental Psychology
The Graduate Center, City University of New York
365 5th Ave New York, NY 10016