By Katie Wright
Like all Americans, I’m sure, I am in awe of Congresswoman Gabby Giffords. It is easy for ASD parents like myself to get bogged down in frustration and disappointment with government agencies and officials. However, a congresswoman like Gabby Giffords is someone we can all admire.
It is important to look for inspiration in life wherever we can find it. Watching Gabby Giffords make her way through Congress, saying goodbye to her colleagues and staff and submit her resignation to the Speaker of the House truly moved me. We all would like to think we would handle such a devastating attack with such determination and grace. Giffords was shot in the head a year ago and her incredible recovery is a testament to excellent medical care and Giffords’ resilience and hard, hard work.
As I watched Congresswoman Giffords make her way through Congress my thoughts shifted towards the nature of traumatic brain injuries. Like many ASD parents, I have never really viewed Christian’s “autism” as autism, but more akin to a traumatic brain injury.
Many of you know Christian’s story but for the benefit of those who do not here it is. In 2003 I had a nearly toilet trained, silly and affectionate, very athletic 2 year old boy with a 1,000 word vocabulary and then, within months, he was, in essence, gone. Christian lost all his words, every single one. Not only that, Christian clearly could no longer understand English. Christian easily spent half the day screaming and trying to bang his head on the floor. All language requests were met with a glazed, checked out look, a look I later came to understand as absence seizures. Christian also stopped recognizing family members. First he no longer knew our friends, then my siblings and then his grandparents, with whom he had been very close. Christian once ran to greet my mother; he now stared at her blankly and screamed if she got too close. Whereas in spring 2004 Christian clamored to “hold his baby” and tell his baby brother, “it’s OK, no cry,” by fall his brother was an inanimate object to him. Simultaneously, Christian lost all gross and fine motor abilities. He went from being a playground champ to being unable to climb a simple ladder or stairs.
Doctors told me that autism was a social and behavioral genetic disorder. I kept asking what does that have to do with the fact that Christian can’t recognize his family or the fact we are constantly in and out of hospitals? Christian had a brain injury not a social disorder.
Dr. Nina Zeldis, a professor of brain rehabilitative medicine at Tel Aviv University, is arguing for a paradigm shift in treating head trauma, “we need to understand the physiology of disease- it really is a disease- and how to manipulate it.” Zalfonte describes recovery not only as behavioral but “helping people to enhance integration of learning and improve balance and verbal output.” That sounds familiar to me. Christian and I spent hours and hours every day on the playground relearning how to climb a ladder, use a slide, run across a mini bridge, slide down a pole. Our family went swimming, bought new bikes, a trampoline, a Barney workout tape, pot holder kits, anything he was willing to do (and it was hard work getting Christian to do any of this for a long time) that might help him regain his fine and gross motor abilities. The process was much like how people relearn how to walk, shower or dress themselves after a stroke. Christian once again learned how to use the playground (rather than screaming in fear when he was on a ladder or slide), put his shoes on, swim, drink from a sippy cup... My whole family were, naturally, thrilled to see Christian’s motor skills recovery. He worked so hard to make it happen. Unfortunately, recovering Christian’s cognitive abilities and physical health would prove much more challenging.
Many amazing OTs helped Christian along the way. Don’t you wish basic occupational and physical therapy for ASD kids got some real attention by researchers? If this subject got 1/50th the investment of psychotropic drugs trials wouldn’t you be thrilled? Gabby Giffords also had a team of OTs and speech therapists helping her.
Loss of gross and fine motor skills, a common result of traumatic brain injuries, is most successfully remediated via behavioral interventions. That worked well for Christian and Gabby. I was thrilled to be able to figure that part out. However, during early critical period of the brain injury, Christian’s cognitive damage, unlike Gabby’s, was addressed only via behavioral therapy. That did not work well for Christian. He needed a physiological intervention for the total body inflammation that was rapidly damaging his brain, gut and immune system. Instead all Christian got was 1-1 teaching.
Yes, no doubt about it Gabby Giffords was lucky, the gun shot wound could have been worse but with excellent medical care she has made a remarkable recovery. It was amazing watching Giffords, walking through Congress smiling, clearly thrilled to be greeting colleagues. Yes her speech is halting but she is able to communicate well. Giffords was shot in the head with a 9mm bullet at point blank range. The bullet tore through the back of her head and exited near her eye. The part of the brain brain most damaged by the bullet manages vision, language and motor control. Those are the same parts of Christian’s brain that suffered damage. Like Gabby, so many regressive ASD kids lose language, motor control and some vision. Christian went from making beautiful eye contact to viewing everything only via peripheral vision.
As if Christian’s primary regression was not bad enough, a few months later while on vacation in Florida, Christian suffered a semi-stroke. I believe this happened because his initial brain injury was never treated. Christian woke up one day with totally glazed-over eyes and his tongue hanging out of his mouth. One side of his face was droopy and he was drooling. That day Christian did not seem to understand a word I was saying, nor could he not respond to his name or even eat. I frantically called his doctor in NY and she told me it was probably nothing and he would snap out of it. More bad medical advice that I followed, like an idiot. However, the next morning the stroke symptoms were gone and gradually he was present and with us again but never really the same. This stroke/ regression had severely damaged his brain.
Dr. Zeldis described the aftermath brain injury as follows: 1) difficulty speaking and understanding speech (check), 2) difficulty reading (I wish!), 3) increased impulsivity (double check), 4) loss of emotional control (check), and 5) diminished hand/eye coordination (triple check). These symptoms are nearly identical to Christian’s autism.
Ms. Giffords was shot in the head. If that isn’t a brain traumatic brain injury what is? She was shot in the head; the bullet went through her brain yet she has made phenomenal recovery. Amazing, and wonderful right?
What happened to my son’s brain that resulted in more severe and lasting brain damage than someone who was shot, at point blank range, in the head? It is my hypothesis that Christian has failed to make Gabby Gifford style progress because his regression was treated as a genetic behavioral disorder, not as the traumatic brain injury it actually was. Within the span of a few months my son had a series of fevers and a semi stroke. How on earth is this a behavioral disorder? Why did so may doctors fail to recognize the obvious, Christian had a traumatic brain injury?
Ideally what happens in cases where a person recovers from a traumatic brain injury? Dr. Ross Zalfonte is professor at Harvard Medical School and an expert in traumatic brain injuries. Primarily Zalfonte recommends immediate optimal acute intervention. This often involves an immediate medically induced coma to stop the brain swelling. I was told to wait it out when I called Christian’s doctor detailing his mini stroke. Dr. Nirt Weiss, a neurosurgeon at Mt. Sinai, also states that initial treatment is critical to recovery. “With brain injuries the worst damage is often not done by initial wound but by the body’s attempt to heal it…Inflammation …in which immune cells rush in and repair injured tissue and remove dying cells can do more harm than good by causing more brain swelling.” Jenny McCarthy’s son, Evan, experienced his first life-threatening seizure in conjunction with the onset of his autism. Evan was placed in a medically induced coma and recovered. But when a kid has strokes and seizures, this is because of “autism,” not a traumatic brain injury?
The majority of mainstream autism researchers refuse to consider a paradigm shift for this ASD subgroup. The idea that a percentage of autism is basically vaccine-induced brain damage frightens them. Well, it frightened me too, but we have to deal with reality. Thank you to Gabby Giffords for inspiring me explore this area of research. More on autism and traumatic brain injuries to follow.