Katie Wright: An Open Letter To NIH & Autism Research Community -- Watch CD Foakley, Broken Nights and Lost Days: Inside World of Severe Autism
By Katie Wright
Over the past weeks we have heard genetic researchers hailing the discovery of the latest (I have lost count) autism “gene.” We have heard how “exciting” this discovery is, what a “breakthrough” this is. All their hard work is paying off, and so on and so on…
I am sorry to say I am not excited in the least. These “breakthroughs” seem to appear with great regularity yet make no impact on the lives of anyone actually living and suffering with autism. Neither do these “breakthroughs” elucidate the cause of autism or treatment options. They merely describe the genes involved in a tiny population of ASD people with a chromosomal abnormality. This minuscule group has almost nothing in common with comparably huge population of those affected with severe regressive autism.
Here is a video of a California family struggling to care for a severely autistic 17-year-old boy.
I challenge anyone to live through this. I have seen and experienced many of the worst aspects of autism but this family truly humbles me. They are heroes in every sense of the word. The Mom introduces the family by stating it is Sunday and they have been up since 4:55 AM. This 17-year-old boy is in pajamas, a diaper and is wearing protective headgear. The boy repeatedly trying to strike himself and the Mom is attempting to hold his hands by his sides. She has the resigned, heartbroken voice of a parent who has been through too much and lives in constant emotional pain. The Dad is behind the camera.
The Mom describes how her son suffers from “savage self abuse” and has badly damaged his ear. The boy is walking in circles attempting, over and over again, trying to strike his head. The Mom reels off a laundry list of the medications they have tried, all of which have failed to help her son. In a desperate attempt to stop the self abuse she ties the boys hands behind his back. Over and over again this Mom says, “I don’t know what to do. I don’t know what to do.”
The boy is clearly ill, probably chronically so. He is emaciated. His Mom describes how he has suffered from impacted bowels. This is an extremely painful, yet common problem among the regressive autism population. Little to no research monies have been invested by the NIH towards uncovering the cause of bowel disease in these children.
In 2009 the NIH invested $6,059,000.00 in face processing, eye gazing research.
The Mom knows her son is in pain, probably constant pain, and states she has been taking her son to doctors for 17 years. “I can’t seem to get any doctors to figure out what the hell is wrong with our son.”
“I have to spend 19 hours a week researching …because no doctor will put in the effort, time or compassion to help him…they just throw drugs at him.”
There is a direct correlation to GI disease and regressive autism. I don’t know the specifics of this child’s autism, but in most cases regressive autism occurs after a series of infections, precipitated by an adverse vaccine reaction. A common denominator among these families is a history of autoimmune disorders. These children, like mine, are born with more fragile than average immune system and cannot safely tolerate the challenge of numerous viruses and dozens of toxic adjuvants. 80% of the immune system is in the gut, hence the prevalence of GI disease in this population. If untreated, as it usually is, the brain is damaged via the immune system, which directly connects the gut to the brain.
No human being, no animal, should have to live with the kind of suffering this boy endures. What happened to this child’s brain when he was a baby to cause this degree of autism? Why isn’t anyone asking this Mom what she thinks?
How is it possible that helping these children is such a low priority at the NIH and among the autism research community? Why are we celebrating the finding of the hundredth autism gene while doing next to nothing to helping autistic children living in agony? Why are hundreds of millions of dollars being spent on genetic research that just might, someday, elucidate “pathways to treatment” when we can could just listen to these families and start studying and treating these children today?
I want to thank this incredibly courageous family for sharing a day in the life of their son. Their son cannot speak for himself. Posting this video is a way of making his severe autism visible. Children like this do not attend IACC meetings, they do not lobby their congressperson, and they do not give uplifting speeches about how they are “different,” not “disabled.” These children will not develop computer software, they do not have savant skills, and they cannot speak or care for themselves. No playdates, no sports teams, no drivers license, no prom, no college, no sleeping through the night without a diaper and no freedom from pain. Everything, but the love of his family, has been taken away from this boy.
It is inexcusable that the medical and research community has failed so abysmally to help this child and all the autistic children like him. I hope every researcher reading this has the courage to take a good look at this boy’s face and imagine what his life is like and what autism has done to his family. Then think about how you can work with parents and make serving these children a priority.
Katie Wright is a Contributing Editor for Age of Autism.