Hmmm. I wonder? Children’s Hospital of Boston which has been the recipient of tens of millions of our hard won autism research dollars still cannot decide if 1 in 91 American children on the ASD spectrum is real? To use their words, these numbers do not represent a crisis, a national emergency or epidemic but merely a “mystery.” It is all too “unclear” and confusing to say if the increase is real.
OK, does anyone else feel nauseated by this? The geniuses at CH Boston placed this most inane and borderline offensive headline on the front page of their website. Another researcher and non parent defended CH to me saying that it isn’t their job to develop an official position paper on whether the autism increase is real. Fair enough, but it was CH of Boston took it upon themselves to publicly declare that they do not believe there is an autism epidemic or crisis. I also called and e-mailed CH of Boston for a comment or clarification- no response. As a result of their non response I think their headline speaks for itself: CH of Boston would not describe the fact that 1 in 91 children and 1 in 58 boys on the spectrum as a crisis. What will it take? 1 in 10 boys, 1 in 2 for CH Boston to wake up to reality?
My second thought was a) who is giving CH of Boston money for autism “research”, b) how much, and c) what is CH of Boston doing with our research dollars? The answers in a nutshell are NIH and Autism Speaks science, tens of millions and basically studying genes. CH of Boston stars in the annual Boston Autism Symposium, This symposium is all genes, all the time, no environmental triggers, no innovative biomedical science, no vaccine discussions, no research about regression, little family input and has been basically been progress free. I swear, check out the past 5 years of symposiums- they are all the same! Same characters, same studies! Time stands still there!
The days where our community kills ourselves raising money and lobbying our representatives for increased autism research monies in order to hand it over to bureaucrats who “know best” are over, long, long over. It is time to start demanding deliverables, significant family involvement and meaningful progress before these institutions get another dime. And by progress and deliverables I mean progress according to our children’s needs- not progress according to a lab worker’s niche academic interest. Families want research on helping their children now, adverse vaccine reactions, curing co morbid diseases and disorders, environmental triggers, how to halt regressions, immune deficiencies, the effect of adjuvants on a baby’s central nervous system- NOT 10,000 more studies on Fragile X, the genome or on a possible mystery mutation on chromosome 16.
CHOP and his sister hospital CH of Boston seem to believe that all this money just falls from heaven and into their lap. Guess what CHOP and CH- it doesn’t. You are not entitled to anything so start proving to our families that you are listening and working with us rather than actively undermining our children by declaring the autism epidemic is mirage. Downplaying these incredible prevalence numbers, rationalizing away their significance, hiding from our families, failing to treat our children for their co-morbid conditions, failing to attend DAN! conferences and instead holding futile gene fiestas won’t make these numbers go away. Maybe CHOP and CH Boston need to stop studying autism and leave these research dollars to scientists who truly understand the gravity of this crisis and are invested in helping our children. My son won’t miss their participation a bit!
Let’s use our money and influence to push autism orgs and the NIH to invest in scientific institutions that understand, at the very least, that 1 in 91 kids on the spectrum represents a real increase and a very real crisis. It is time to start demanding that every penny you raise for any autism research organization not be allotted towards more CHOP or CH Boston projects but instead directed towards scientists who work with, rather than against, the autism community. Instead these funds should go to progressive autism scientists with innovative ideas, integrity, and an actual interest in doing research important to your child.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.