By Katie Wright
I think our community should accept Dr. Landis’ apology. I too have made mistakes in public. Landis quickly took responsibility for the content of the note. Prior to her resignation, Landis pledged to support vaccine research. As a Mom of a once healthy and typical child, who is now profoundly autistic and chronically ill, I greatly appreciate Landis’ support for the study of children who have been adversely affect by vaccines and regressed into autism. I am sure these actions will galvanize IACC to reinstate the vaccine research proposal that Insel and other federal members had unlawfully removed from the strategic plan. Comprehensive and independent vaccine research upon the effect of multiple vaccines and their toxic adjuvants on babies’central nervous system has never been done. It is about time.
The only element missing from Dr. Landis’ statement was an apology to Lyn Redwood. As our community is well aware Lyn Redwood and Lee Grossman are the sole IACC autism advocacy representatives. Lee and Lynn are the only ASD organizational representatives of the nearly 2 million American families living with autism. When hostile IACC committee members like Dr.Yvette Janvier dismiss a mere discussion of our children’s suffering as “offensive” it has been Redwood who has urged the committee to come to grips with the fact that autism is frequently a multi-system disease with profoundly disabling co-morbid disorders. Redwood has continually advocated for research into regression, adjuvants, adverse vaccine reactions as well as GI disease and dietary interventions studies that would be relatively inexpensive and lead to a better quality of life for some many of our children. Lyn Redwood is a parent, a pediatric nurse and has been autism advocate longer than anyone in that room.
Redwood deserves and apology not only from Dr, Landis but also from Dr. Matt State and Dr. Ed Trevathan. I was astounded that these gentlemen sat back allowing Landis to accept all responsibility, for what was surely a group effort. I am honestly unclear about who wrote what. The parent who gave me the notes only witnessed State and Landis passing the paper back and forth. State is clearly as culpable for the sentiments expressed in the note as Landis.
Another disturbing element easily extrapolated from these notes is the implication that IACC business has been discussed- outside IACC meetings- between committee members. Such communication is expressly forbidden. When Story or Matt wrote “That is what Ed thinks too” in response to “is Lyn making autism into a multi-symptom disorder…in order to feed into vaccine injury”, it is clear Ed, Matt, Story and whomever have discussed this subject earlier. I listen to all the IACC meetings and Ed Trevathan has never expressed these beliefs in public, therefore this conversation took place in private. Why has Tom Insel allowed such flagrant violations of the committee’s integrity? Is it any surprise that the autism community widely distrusts IACC?
Tom Insel had the opportunity to rectify this situation during the creation of the autism research subcommittees. Lyn and Lee nominated a number of well known parents who are either respected autism clinicians or advocates, or both: Dr. Bryan Jepson, parent, clinician and researcher, Dr. Jerry Kartinzel, parent clinician and researcher, Dr. Jeff Bradstreet, parent, clinician researcher, Jane Johnson, parent author and president of Defeat Autism Now!, Peter Bell, parent, former president of CAN and vice president of Autism Speaks, Sallie Bernard, parent, researcher and co-founder of SafeMinds, Laura Bono, parent, advocate and co-founder of the National Autism Association, Lisa Ackerman, parent, advocate and founder of TACA, Stan Kurtz, parent, advocate and president of Generation Rescue… These parents could have provided the much need balance and perspective that IACC clearly lacked. Instead of creating a space for this community of families, IACC federal members voted in blocks for ultra conservatives, non parent members with archaic p.o.v.s like Dr. Robin Hansen, Dr. Manny Bloom, Dr. Matt State, the note passer from Yale and Dr. Ed Cook, yet another NIH representative. This was a huge mistake.
Finally, the fact that such bizarre and disturbing theories (families fabricating illness in order to build cases for vaccines court) abound amongst IACC committee members is a direct result of the manner in which Tom Insel assembled IACC in the first place. There are 19 committee members and only 3 are advocacy representatives: Lee, Lyn and Stephen Shore. My parents, Autism Speaks founders Bob and Suzanne Wright had many, many, many meeting with Congresspeople and Senators about the need for families to have a bigger role in autism research via the Combating Autism Act. 3 out of 19 was NOT the ratio anyone had in mind. IACC has been packed with too many federal members, most of whom have no personal, clinical or research experience with autism. Two other public members are Insel’s friends: one sits on the committee because she is neighbor and the other represents a tiny mystery org with secret financial and membership stats. We can do so much better than this. At least Stephen Shore is a true representative of the Aspergers community. Meanwhile large and well established and national autism organizations like Autism Speaks, the National Autism Association, Generation Rescue and Defeat Autism Now! were not allotted IACC seats. Incredible, right? It is like a federal committee on breast cancer composed entirely of men.
In order for IACC to succeed it needs to make big personnel changes immediately. HHS president Sebelius recently pledged that autism research is one of her top priorities. The parent community already did the hard work in securing the funds, now we need to rehabilitate IACC by transforming the committee into a well informed, revitalized and scientifically progressive body that will support unbiased and innovative research. Secretary Sebelius could demonstrate this commitment by appointing new IACC members and a new IACC chairperson as soon as possible. We have already wasted enough time
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.