Human Rights Panel Autism One 2011
I loved the book Vaccine Epidemic edited by Louise KuoHabakus, MA and Mary Holland, JD and I was deeply honored to be asked to participate on the Human Rights panel at Autism One this past weekend along with Kim Mack Rosenberg, JD and James Turner, JD. The following is an excerpt from the talk I gave.
By Alison MacNeil
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I am the mother of two children, one of whom was severely injured by his vaccines. When I tell people that my son Nick was injured by his vaccines they’ll often say “are you sure?” This really strikes me because if I had been standing on a side walk and Nick had rushed into the street and been badly hit by a car, no one would ever doubt me when I told them. Yet my experience as a witness to his regression after vaccination is frequently discounted.
As well as a mother, I am also a psychotherapist. I have been practicing psychotherapy for 17 years and in that time I have worked extensively with survivors of trauma. There are some striking parallels to the experience of a trauma survivor and that of the family of a vaccine injured child. I am in no way equating a vaccine injury with sexual abuse. However, in both situations there is the inclination not to believe the victim, or in our case, the parents. They call this Secondary Traumatization. In this situation the survivor is not only having their reality invalidated, but they are essentially also being accused of lying. In situations of rape the evidence is often mishandled, lost, or not collected quickly enough. This bungling of evidence frequently undoes any legal recourse the victim may have, and removes the concrete proof the victim will need to cling to, as they try to make sense of their own muddled memories. There is often an artificial statute of limitations. Finally, there is a sense that the victim should already be over it.
As parents of vaccine injured children, we are not believed, our children do not receive quick, definitive lab work as they are regressing or shortly after an adverse event, and we all know that the statute of limitations on our grief, like that of the vaccine court, is far too short.
When a child has an adverse reaction to a vaccine the parents are the first responders. Yet unlike a crime scene when the detective arrives, or in our case we get the child to medical attention, the doctor most frequently doesn’t believe us. We explain; we took a healthy child in for routine shots, we took them home and perhaps immediately, within days, or within several weeks, which was our case, our child has disintegrated before our eyes…A + B = C. We are told “No, it didn’t happen.” Now because we are being talked out of what we saw with our own eyes, confusion sets in. When we add to this the ‘doctor as God’ complex and the sexism still rampant in medicine today, mothers often feel bullied.This creates the kind of psychic dissonance that is so much a part of trauma. Add to that the exhaustion of caring for the incessantly screaming child, the worry, the grief, the rage… and you feel crazy.
When my son regressed into Autism I felt like I lost all solid ground as a mother. I didn’t trust myself, I couldn’t find my center. I couldn’t connect back with the certain, nurturing person I had been just a month before. If what I had seen hadn’t happened then I didn’t know anything anymore. This kind of disconnection to self is also a classic symptom of trauma. At that time, Nick was about 2 years old. I found myself watching him like a scientist would, collecting data on his first signs, that turned into sounds and then the first words to come back. I wasn’t mothering him from my heart, although I loved him dearly. I was mothering him from my head. I had seen his regression after vaccination and yet I was told by his doctors that his autism “had just occurred as it does in kids between the ages of 15-18 months.” This was so different from what I had seen with my own eyes and experienced viscerally in his feral screams and failing body that I no longer trusted my instincts. I was as disoriented as he was.
There are parallels for us in the healing stories of other victims as well. Like the trauma survivor, when we begin to speak our truth, first timidly and down the road with confidence, we move from victims of our experience to survivors. Where does the confidence to speak up come from? From feeling encircled by others who have been through the same thing and from being believed.
I went to the Green the Vaccines Rally. In the cab back to the airport after the Rally I called my husband. I said “Honey this really happened. I just stood with 8,000 parents with the same story. We’re not crazy.”
Then we began the work of healing Nick’s very sick little body and I felt in tune again both with him and with myself.
I don’t know how much of the damage done to Nick through his vaccine injury will be permanent. How much we will be able to help him manage over his life time with various interventions, and how much we might be able to fix. But I do know that he was injured by his vaccines.
I got to a place about two years ago where I would walk into a doctor’s office and say “No one believes me, but I think this kid was injured by his vaccines.” I was usually met with either disavowal, or that blank face that always leaves me so curious. What are they really thinking? Do they think I’m another one of those wacky autism parents who spend too much time on the internet? Have they just shut down and stopped listening? Or would they like to say more but can’t?
Nick has a lot of medical problems so we have seen a fair number of specialists. I’m getting to the point now where I’m not willing to work with a doctor who isn’t open to the idea of vaccine injury. If I can’t put that out there, then what are we really treating? My hope is that over time we parents are educating the medical community. A doctor may disagree with me and I may choose not work with him. But perhaps the next mother comes in and has the same discussion, and the next and the next and sooner or later this physician has got to open their mind to the possibility. That’s why I think it is so important to speak up with doctors.
I think some of the greatest change is coming from some of the smallest and quietest conversations; at the bus stop, in the grocery store, on the playground -mother to mother. A few years back I used to get into these conversations and a parent would say something to me like “Well the vaccine/autism issue is closed, the science is in and they’ve proven there is no link.” This was so emotional for me that I would respond from the hip with some garbled comment that wasn’t all that effective and left me feeling really vulnerable.
I think the antidote to this is Mary and Louise’s book. Armed with solid facts we are able to respond in those moments with quick information. Because this topic is so emotional for all of us, to be able to respond with fact and science gives us a little intellectual distance. Our breathing slows down and we can be rational and clear. Then we can walk away feeling effective.
It seems to me in Autism that everybody gets to say no to the Autism parent. Your pediatrician says “No, your child’s regression into Autism couldn’t possibly be the result of a vaccine and if it was I have zero liability.” The vaccine industry has also been granted zero liability. Your health insurance plan frequently denies imperative medical and behavioral treatment for your child. And the Vaccine Court refutes your case. Everybody gets to say “No.”
There is one thing that they cannot say no to…your right to tell the story of your child’s regression after vaccination as boldly and as frequently as you see fit. It belongs to you and it is yours to do with as you please. It is your human right and I would argue responsibility to tell your story.
It gets ugly when you get vocal. I think it’s only going to get uglier as the epic tragedy of what we are doing to children today comes cracking open, and I truly believe it will. I think it’s going to become a brutal fight. There is just too much at stake. The other side has reverted to discrediting the speaker. My husband is in public relations and he calls this the “Nuts and Sluts Approach.” They have worked tirelessly to portray Andrew Wakefield as a nut and Jenny McCarthy as a slut. When we did the Autism Series on PBS and I mentioned that my son regressed after vaccination, several people scoured the internet and found whatever mud they could sling.
When bloggers or health writers get nasty, I feel a bit like Tommy Lee Jones in the Fugitive. You know the scene where he captures Harrison Ford and Ford tries to explain that he didn’t kill his wife? Tommy Lee Jones says “I don’t care.” That’s how I feel. So they found out that I followed the Grateful Dead in college, I don’t care. Nothing that anyone could ever say about me is going to hurt as much as what has happened to my child.
By the way, I am so glad I lived it up back in the day because this Autism thing has been no party.
And it’s not like I embezzled millions of dollars from the CDC or was a heroin addict.
Sometimes I feel more effective as an activist than I do in healing Nick. And sometimes the opposite is true. On a bad day for Autism politics when stupid studies have come out such as the one that said that most children with Autism have moms with big boobs, or that Autism is due to tech geeks marrying women who don’t speak English because those women are less aware of their husband’s social quirks. Anyway, on the lousy Autism politics days, my husband will say, “Look at Nick, he’s doing great, let’s keep going.”
The fact is…when we don’t tell the stories of what happened to our children…they win. Many of us are our children’s voices. You, like me, may not be able to explain the exact mechanism that caused your child to fall apart. But you do know what you saw as his first responder. We mustn’t let ourselves be talked out of our reality. We mustn’t let the psychic dissonance of not being believed make us doubtful or quiet. Like all of the survivors that came before us, we can be emboldened to tell our stories to make change.
I watched my child disintegrate after vaccination. I know what I saw. I know that it was real. When I tell his story, I feel aligned with the truth, connected to my core, connected to myself as a powerful, nurturing mother worried about the health of all children.
I want to thank all of the parents who have been so vocal for many years on this issue. I am so grateful to you. Without you I would be in the dark. A more experienced Autism mom told me early on “It will be the parents that will get you through this.” I had no idea at the time how fundamentally true this would be.
I’m behind every one of you as you embrace your human right to tell your child’s story of vaccine injury. And I promise you that I will keep speaking up.
Alison MacNeil, LICSW