Katie Wright, National Autism Association (NAA) and Safe Minds board member and the mother of an autistic son, Christian, says that she has not spoken to her father and co-founder of Autism Speaks, Bob Wright, since he and his wife Suzanne “repudiated their daughter on the charity’s Web site” on Saturday, June 2nd. The June 18th New York Times reports
Ms. Wright called the statement a “character assassination.” She said she had not spoken to her father since. Ms. Wright continues to spend time with her mother, but said they had not discussed the situation.
“I totally respect if her feelings were hurt,” Mrs. Wright said. “But a lot of feelings were hurt. A lot.”
In the short time since its founding in February of 2005, Autism Speaks quickly became a “mega-charity” by forming alliances with the Autism Coalition for Research and Education; the National Alliance for Autism Research (NAAR) (“devoted to scientific research into potential genetic causes, with high standards for peer review”); and Cure Autism Now (“which has championed unconventional theories and therapies.”). As Suzanne Wright notes, Autism Speaks (and the Wrights) stepped into the middle of disputes about the causes of autism (environmental, genetic) and treatments for autism—-disputes which are the subject for impassioned and fierce exchanges among parents of autistic children. Further, Autism Speaks did not initially acknowledge the experiences and the voices of autistic adults, whose views will only become more and more important as autistic children today (including my son and Katie Wright’s) grow up. The New York Times article also does not mention that there are other autism organization besides those mentioned, and specifically organizations that have been founded by and represent autistic adults.
It is sad to read about Katie Wright not speaking to her own father on Father’s Day. One family, one organization, cannot provide the answers to the many questions that many have about autism—about how best to help a child; about why the prevalence rate has increased—-and those disputes will continue. But I hope that Katie Wright and Bob Wright can start speaking to each other again sooner rather than later: Both have had significant roles in the short history of Autism Speaks, and it would be a cruel irony if two persons—an autism mother and the grandfather of an autistic child—can no longer speak to each other.
And, even more, let’s hopt that, rather than on the Wrights’ family squabbles, the conversation about autism can focus on the things we can agree on—on education, and on what we can do now to help autistic children achieve to their fullest potential.
[...] been some (heated) (impassioned) discussion in the autism community of late (go here for one exchange) about research that focuses on possible environmental factors connected to autism [...]
Of course “difficult” for me at first but now pronounceless conversations are the norm around here…… and, of course, he’s had to deal with my OCD-ness………
Jim often says that he thinks best when in motion, whether driving, biking, walking, running, on the train—gives him more focus. Lately he’s been referring to himself as having “Asperger’s moments” in social situations—guess more people need an education in conversational multitasking.
Kristina:
“…his ability to focus on many different things at once is indeed a strength (and can also makes things difficult for him….”
Errr, didn’t you mean difficult for you? I’m quite sure he’s just fine with the conversational multitasking.
FWIW, I’ve been diagnosed twice with ADD (sans “H”), and yet the way it “presents” for me is quite different: though I go off on tangents and constantly feel the need to interrupt (owing to severely poor short-term memory), I can’t stand to do/work on/talk about more than one thing at a time. It’s almost as if my alleged A.S. perseverative(?) trait is doing battle with my ADD traits. The sad part of that, if true, is that it’s also resulted in my being unable to perseverate in any useful specialized manner, and my career suffered for it. I’m a sometimes-unwilling jack of all trades.
I wouldn’t trade my boundless curiosity for ANYTHING, though, not even financial and career success.
Mark Craig
Great to meet another 10 year old and his mom! Did you have his fillings removed, just wondering? (Other mothers I know have done this.)
We tried a number of biomedical approaches for Charlie when he was younger (he started the gluten-free casein-free diet when he was 2 years old). He had rashes all over his cheeks and body and I have a few photos of him eating ice cream and looking, well, not exactly focused. As he’s gotten older, focusing on his education has helped the most, in his case—has helped him manage the behaviors that made learning so hard (SIBs). I’ve been to a DAN conference and seen a DAN practitioner, when Charlie was younger.
Mark, thanks for the mention of “other neurodiversities”—living with Charlie has made me more than aware of these—I’ve mentioned my husband having ADHD and his ability to focus on many different things at once is indeed a strength (and can also makes things difficult for him—-our conversations are usually on several different topics at once).
I apologize if I left the impression that by “cure” meaning something different than what we are doing to help our son — which is a biomedical or DAN protocol approach. For Gavin it is very effective in so many ways…. Sensory, cognition, self-regulation, emotional control, everything. A weeks worth of “infractions” or a few days missing his supplements, and wow, he’s obviously miserable again as evidenced by crying, emotional regression, sensory difficulties..
I am so excited about the progress he has been able to make through a DAN protocol physician, I want everyone to be able to experience the same. I know realistically that’s not possible as children often come to “autism” by varied routes and to different degrees, per se, and respond differently to different treatment options.
When we take our kids to alternative doctors and pay a lot of $$ for NAET, BioResonance, Hyperbarics, IV meds, detoxification, are we not looking for “cure” for the “behaviors” that led us to seek these things in the first place?? My son was in an opiate fog for so long — he was miserable. Getting rid of mercury fillings and dealing with the “gut” issues has made all the difference, for Gavin. Awareness and proven educational interventions all play a role in “cure” if progress is made. These all address “daily issues”.
At any rate, there is always so much for me to learn from all of you, and I appreciate readers not jumping off the deep end at any comments, but seek clarification if something I have posted comes across wrong.
There really are SO many issues related to all the different aspects of Autism and/or ND involvement. Thanks for listening, and being here. BTW, Gavin is 10 also — and truly a great, great kid!!
Thanks for posting all this, Gavin’s mom—-I first read those figures on an email discussion list–I think the child you mentioned lives in Texas (posted on here). A focus on cure can divert attention from the pressing, daily needs of autistic persons and of their families (“can,” not necessarily does) — and just focusing on the needs of my son and making each day good has made a great difference in his life today and in his future life, and in ours. I’ve more to say regarding your comments—thank you.