January 27, 2008
GRASP Board of Directors
666 Broadway 8th Floor
New York, NY 10012
To the GRASP Board of Directors:
Last spring on May 9, 2007, an email was sent to GRASP constituents inviting adults on the spectrum to communicate directly with a convicted murderer who reportedly received a diagnosis of autism while in prison. Recipients were warned that communicating with prisoners is dangerous. The suggestion was made to use an alternative return address, such as the business address of a parent. While the email in question contained a warning of sorts, using someone else’s address is hardly a responsible substitute.
I was immediately concerned about the impact of this email on the safety of GRASP’s members. Research has established that adults and children on the autism spectrum have trouble decoding social language, making social decisions, and navigating adeptly in the social arena. We may miss nonverbal clues and we often don’t have the hidden curriculum information everyone else has. Quite a few of us have trouble with normative boundaries of relationships, many of us have face blindness, and many of us have a very difficult time guessing correctly the intentions of others. Corresponding directly with a convicted murderer is not an optimal choice for anyone, but especially not for adults working with the social, cognitive, linguistic, and behavior challenges associated with autism spectrum disorders. I also had serious concerns for GRASP as an organization. GRASP could be liable if something happened to an autistic person as a result of these types of communications. GRASP could also lose funding from sponsors and donors.
My concerns are not an attack on an adult’s right to make his own choices in life. But organizations have a vital responsibility toward their constituents, donors, supporters, allies, and associated professionals. While respecting the volition of Autistic adults, we endeavor at autism conferences and workshops, in books, in self-advocacy support groups, and in professional circles to teach methods for effective living, to convey strategies for coping with autism-related issues, and to discriminate in terms of what we promote as healthy. Autism organizations also need to promote “best practices” for living as Autistic people. No one can strip Autistic adults of their right to make choices and to conduct their lives, but autism-focused organizations must acknowledge the constraints and challenges unique to autism and work from this understanding to provide constituents with the tools, resources, options, opportunities, and support needed to live life productively and safely.
I communicated these concerns to GRASP’s Board of Directors. I urged the formation of a cohesive policy regarding the content of email messages sent to clientele. I also urged the development of a set of guiding principles for outreach to people in vulnerable life situations who contact GRASP for support. Lastly, I wanted the Board to establish safety protocols for the organization’s communications and operations systems. No action has been taken. GRASP has also made certain political decisions without a procedure in place for feedback from Advisory Board members. For example, I was not consulted regarding GRASP’s joint letter with Autism Speaks. I was hoping that as an Advisory Board member, I would have influence on the direction and philosophy behind GRASP’s self-advocacy efforts.
After thinking for many months about this situation and after thorough consultation with mentors and professionals in the autism field, I have decided to officially withdraw from my position on GRASP’s Advisory Board. I appreciate the work that GRASP has done over the years. I have seen GRASP grow from a small group of dedicated individuals to a national organization in many states. I wish GRASP the best in all future endeavors. Please regard this letter as my official letter of resignation. Should you have any questions, I can be reached at the contact information below.
Sincerely,
Zosia Zaks