Alison MacNeil's Human Rights Panel at Autism One 2011
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
* * *
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
Sadly, many doctors are not scientists but rather are trained to look for the correct answer based on their checklist of symptoms and tests. A true scientist is an investigator who is open to discovery. Everything there is to know about autism has not already been printed, but that is how many doctors approach this, and so many other conditions. I remember hearing a scientist describe scientific inquiry as a conversation with nature. Unless a doctor enters into a conversation with their patients (or their advocates) they are treating symptoms that they see rather than treating the patient.
My hat is off to Alison for having the courage to endure the slurs and insults of those who choose to disregard the observations of tens of thousands of parents. I am a parent of two non-autistic children, but after watching the PBS program I asked an acquaintance, whose child is autistic, what she thought about the vaccine debate. She cautiously explained how her chid had developed normally until the day he received a vaccine. He suffered a seizure that day and went rapidly downhill. He suffered many of the physical problems that Alison described. My acquaintance was so relieved to be believed as most people tell her she is somehow deluded in believing that the vaccine played a role. It's no wonder some parents are told that they are nuts. I think I would go nuts to be repeatedly told that what I observed in my child is not what happened.
Posted by: vtmom | June 27, 2011 at 10:11 AM
Julia -
A pediatrician told me that it was "normal" for my daughter to only have one bowel movement every 7 to 10 days. Also, it was apparently "normal" for her to have to strain very hard to get that one BM out. Chronic constipation requiring laxatives every day - that only succeeded in producing BMs every other day, that were as hard as ever - was apparently perfectly acceptable to this pediatrician and a number of his colleagues. My daughter's bowels were also impacted twice during this time.
If I had left the interpretation of her symptoms to these doctors, I hate to think what state her gastrointestinal tract would be in now. Fortunately, I found a DAN doctor who has helped my daughter a great deal.
By the way, I have also had a doctor tell me that my daughter was not allergic to a medication - when my daughter had broken out in hives from taking it.
Your comment implies that parents know nothing about science (a very bad assumption, if you have indeed made it) and that we have no analytical abilities whatsoever. I hope that if you hold this belief you re-evaluate it, as such a belief is very ill-considered.
Posted by: Carolyn M | June 01, 2011 at 05:08 PM
"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."
Ugh, Alison. That last sentence just punched me in the gut. I have been mothering my daughter so long from my head, I didn't even realize it. This one sentence has brought me to my knees. Thanks for the perspective, my friend.
Posted by: Julie Obradovic | June 01, 2011 at 03:45 PM
Julie,
When my son was 2 he had a reaction to an antibiotic. His stomach became very swollen and he literally started foaming at the mouth. I rushed him to his ped. I told the nurse that I thought he was having a reaction to the
antibiotic. She said, "no,no,no,no that can't be". She sent us to the ER where he was treated for severe gastroentoritis and dehydration. Well, it turns out I was right.
When my son ran a high fever and started regressing and losing language at age 3, I took him to his ped who sent me to an audiologist who referred me to a speech pathologist who referred me to a neuropsychologist who dxed with PDDNOS. This process took months.
I hind sight, knowing what I know now, I think my son had developed encephalitis. Had the ped simply run some tests he could have caught the inflammation early and treated it. Perhaps my son would be in a different place had this been addressed medically instead of letting this linger and cause more damage.
Lesson learned:
There's nothing like mommy intuition. Always follow your gut.
Posted by: Sarah | June 01, 2011 at 03:27 PM
Julie;
I followed your advice.
My daughter had a red swollen, painful in the area of of DPT shot, and running temp around 105 from them.
I left it to the doctors to figure out what this meant.
My daughter six weeks later came down with Kawasakis. No one knew or knows what causes Kawasakis except it is an auto immune disesase that attacks every blood vessel, vein, capillary in the body.
I left it to the doctors to figure out what this meant.
My duaghter passed out, gasped for breath ran a temp of 105 on her last DPT shot. Her SED rates soared. Again.
I left it to the doctors to figure out what this meant.
My daughter had a problem with depression and went from loving, active, to anger, mad and sad.
I left it to the doctors to figure out what this meant.
After a recent Hep B shot from nursing schoool her SED rates soared again, and she now has bipolar.
I left it to the doctors to figure out what this meant.
My daughter had a problem with depression and went from loving, active, to anger, mad and sad.
I left it to the doctors to figure out what this meant.
My son's first DPT shot he ran 105 temp. A few days later the doc heard a heart murmur, they took a soft X ray, and it showed a boot shaped heart from a swollen left venticula.
He was born in a hospital, examined several times by the ped there, he had at least three well baby visits and the medical records said "no" heart murmur detected --- untill that little visit.
I left it to the doctors to figure out what this meant.
His second DPT shot he passed out,gasp for air, ran a temp of 105.
I left it to the doctors to figure out what this meant.
His third DPT shot, he spiked a temp of 105 and had a stroke. The next day he could no longer walk.
I left it to the doctors to figure out what this meant.
Six weeks after this event he ran a very high temp, had a grand mal seizure. After about seven days of high fever it was determined he had atypical kawasaki's.
I left it to the doctors to figure out what this meant.
Another six weeks went by; again a high fever, grand mal seizure, atypical Kawaskais' again, found out on the EEG he had abnormal brain wave activity (epileptic) was put on Phenol barbitol
I left it to the doctors to figure out what this meant.
This went on for the next twenty odd some years.
I don't need no doctor to tell me what it meant, it is just that I am at their mercy to help me out, and I am not even getting the most basic help. Epilepesy went undignosed and untreated from the age of Four for my son.
Let people do the thinking for you, and they will. But why? Did God give them a different type of brain than you. Are you not human too, do you not have the same human brain?
If I have a medical degree will you let me do your thinking for you?
Posted by: Benedetta | June 01, 2011 at 01:52 PM
Very, very powerful. Thank you Alison.
@Julia,
The medical and scientific communities have been corrupted by the multi-billion-dollar vaccine industry to the point where a revolving door with government enables our former CDC director to become president of the vaccine division of Merck, and vaccine makers are indemnified against lawsuits.
The result is mass denial of the vaccine/autism link that has been shown both in parent observations and in scientific studies. Learn more at www.nvic.org
Posted by: pass the popcorn | June 01, 2011 at 12:46 PM
Ah, Julia. What a great idea: leave the interpretation of symptoms to the guy who caused them.
Let me tell you a little story. My friend's husband had his gallbladder removed. A week later he was looking green and feeling awful. He went back to the hospital where the removal was done, and they couldn't figure out what was wrong. My friend and her husband wouldn't settle for that, so they went to another hospital for further examinations and tests, and the second hospital found that the surgeon had snipped more than he should have, and my friend's husband was leaking bile for a week. The original hospital *could not imagine* that they had done anything wrong, so they didn't see what was clearly wrong with my husband's friend. Relying only on their judgment, my friend's husband would have died.
I think what Alison is saying in her piece is that if your kid is sick, he has the right to a doctor who is going to try to help him return to health. Moms (and dads) should not just accept the word of the shot-dealing pediatrician who tells them that boys just develop more slowly, chronic diarrhea is normal, shots never hurt anyone, etc.
Try, Julia, to put your comment into the context that Alison mentions early in her piece. Try to imagine telling a mom whose son was hit by a car that it's not her job to interpret her son's symptoms. Now try not to be so smug when you talk about the almighty white coats and whose place it is to interpret symptoms.
Posted by: Theresa O | June 01, 2011 at 12:33 PM
Julia...If I had not used the resources of other parents to interpret my son's symptoms and had guidance finding the cause my son would have been the child the professionals told me to expect. He would have been a child with a few words, no friends, and in a special school. Doctors told me there was no hope or cure. Parents told me different. There isn't a single thing about him that is autistic. I just got back from his awards ceremony. His teacher described him as smart, talented, and incredibily respected within his class.
Posted by: Diane W Farr | June 01, 2011 at 12:06 PM
Keep in mind that the patient or parent’s job is to report symptoms. I certainly won’t deny that the medical and scientific communities sometimes dismiss symptom reports too easily, but interpreting those symptoms, and determining causation, should be left to them.
Posted by: Julia Huskey | June 01, 2011 at 11:40 AM
Alison,
Thank you for putting this into words. I hope I can find this presentation among the live streaming recordings (thank you also Generation Rescue!).
I also want to thank you for sharing your experience on PBS. I'm sure you are making a difference for some who would have entered into their well-baby visits unaware and unprepared if they hadn't heard your story, and for some of us living, mostly surrounded by disbelief, such expressions keep us (me at least) going!
Posted by: JenB | June 01, 2011 at 04:10 AM
Thank you for writing this and connecting all the dots . . why it hurts so much to be disbelieved . . becasue it is a re-injury and it magnifies the trauma. THANK YOU ! I emailed this to many others! I have tried many times to explain what it is like to be disbelieved but you did it excellently!
Posted by: Caroline McEileen | June 01, 2011 at 03:22 AM
I hope this will be available to watch online?
Thanks so much for speaking out so eloquently!!
Posted by: Twyla | June 01, 2011 at 01:03 AM
Yeap that is about how I feel, Allison got that right.
It is like you see your kid hit by a bus and then told by everyone that is not true because the guys driving the bus are important doctors, heads of NIH/CDC, judges, researchers, and so forth. And if they did hit your kid you know they would stop and tried to help!
Two other things I can't stand either.
1.) I am patted on the head and told yes, we know you believe that vaccines caused this.
No - I know.
2.) It is just "some" kids that react to their vaccines.
How do they know it is just some kids for sure? The immune system covers about everything in the human body. How do we know that thyroid trouble that appears out of no where years later is a product of an immune system messed up from some vaccine received as a youth? This was recently said to me - like Sunday and the one that said it has a 35 year old son (something has been wrong for a long time)weighs 400 pounds living on their second floor with no means of support.
Posted by: Benedetta | May 31, 2011 at 11:11 PM
"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."
This was all so very powerful and needed. I am so sorry I could not have been there. You have hit the nail on the head on so many fronts, that it will take awhile to fully feel your impact on us. Thank you so so much!
Posted by: Cynthia Cournoyer | May 31, 2011 at 10:36 PM
Alison, Thank you for all you have done.
Until the recent PBS series, I did not know you were a part of the group. As always, this is likely a rather predictable part of media coverage.
The truth of the vaccine industry slowly gets around, one e-mail at a time. It is a bit pathetic that the AAP & vaccine industry can never use "real science" to back up their claims.
...only statistics of vaccine records that they edit to show what they want to see
Posted by: cmo | May 31, 2011 at 10:33 PM
I'm glad to hear that I wasn't the only one moved to tears by Alison's presentation. I watched it via live-stream (my son's issues prevented me from making the one hour car ride to the conference), but this was truly a phenomenal speech. Thank you, AofA, for posting it here, and thank YOU, Alison, for so eloquently speaking out on behalf of all us parents and our injured children.
Posted by: Donna L. | May 31, 2011 at 08:26 PM
Thanks so much, Alison. We need your professional input...and you have a way of putting it.
It's interesting that Bernadine Healy, before she spoke out for vaccine safety, launched a crackdown on sexual harassment and sexist promotion practices within the NIH when she was director. I wonder if both situations had a similar smell to her.
There's no end to capitulating female health professionals groveling for amnesty from discrimination by proving they can be bigger jackasses then men, but they get downsized or passed over all the same. The bias is there, there's no doubt. If you're female, you're allowed to string about twenty words together, about the length of a tweet, before getting shut down. If you spout the party line, you might get a double tweet's worth of patience.
I can't help thinking that, because women are usually the front line defenders of children, it's partly why the backlash by Team Vaccine has been so violent. How dare we.
Posted by: Gatogorra | May 31, 2011 at 07:54 PM
Sheer Brilliance! Sobbed like a baby when you spoke this truth during the Ebcala presentation. WELL DONE! So blessed to know you. Best, lj
Posted by: LJ Goes | May 31, 2011 at 07:24 PM
Thanks Alison,
This goes so much to the heart of what so many of us have had to endure.
John
Posted by: John Stone | May 31, 2011 at 07:21 PM
Thank you Alison! I'm in tears, from what you have written, and what you have endured.
I'm grateful to all the warrior parents out there who have come before me, and who gave me hope and helped guide me to help recover my son and save my daughter from harm.
I won't see a doctor who doesn't respect my views on vaccine dangers, and support my decisions to refuse any vaccines.
I know that our side will some day prevail, and history will be kind to us. We just have to get to that point...and never give up.
Judith
Posted by: Judith | May 31, 2011 at 05:39 PM
Thanks Allison for your wise words. I see that the only choice we have now is - NOT TO VACCINATE al all. There are no safe vaccines and it is insanity to risk the life of our children by vaccinating them for trivial (at our times) infectious diseases.
Posted by: veritas | May 31, 2011 at 05:26 PM
Reading this it occurred to me that the whole neurodiversity thing about accepting autism is really about learning to pretend that brain damage is normal. And on one level it does reduce the stress level because all of the people who have been harassing you (doctors, relatives, trolls in online discussions) will treat you very kindly if you just shut up about the damned vaccines. Weird world we live in...
Posted by: MinorityView | May 31, 2011 at 03:46 PM
This is a terrific article! Thank you so much for putting this out there. It is true, the trauma of being a parent of a vaccine-injured child is very real.
My child's dramatic changes began less than an hour after her shots. You'd think bringing an inconsolable, wild, animalistic screaming baby back to the doctors office 5+ hours after her vaccines were given, that the MDs and their staff would be sympathetic and on your side.
Not so. They acknowledged the inconsolable screaming and vaccine reaction the day it happened, but denied and dismissed all the other physical and mental deterioration that happened in the days, weeks and months that followed.
The vaccine damage trauma comes at you from so many directions, seeing your child change dramatically before your eyes and then experiencing the ice-cold treatment by the pediatrician and nursing staff who administered the shots and as you say Allison, even your friends and family questioning are you sure?
Well, Yes, I AM sure! Vaccine damage did happen to my child. And she's NT today thanks to the many moms who lived thru similar vaccine reactions before me who shared their stories in books and on the internet. Without them, I'd have a permanently disabled child today.
Forever grateful to have opened my eyes and taken a different path.
Posted by: Beth | May 31, 2011 at 03:31 PM
You are the greatest Alison! thank you for saying everything I am feeling.
I am also a therapist for survivors of sexual assault and agree that trauma issues in our families are profound and largely unaddressed. Surviving a sexual assault is incredibly hard. I am in awe of these incredibly brave men and women working on their recovery. However, with good treatment most of our center's clients made excellent progress and reclaimed their lives. Kids like mine have much poorer odds. Despite the "best" available interventions progress can be so elusive. The trauma of severe regressive autism never goes away.
We are where sexual assault survivors were in the 1970s. We need better research, more comprehensive interventions and most of all a place at the table for our families.
Posted by: Katie wright | May 31, 2011 at 11:41 AM
As I recall from my grade school science classes, the root of all science is observation. Man and woman observed the world around them and above them and began to ask questions.
When parents of children who visibly regressed after vaccinations tell people what we observed, we are told we are being unscientific.
Really?
It would seem we are actually the ones doing real science.
Thanks, Allison, for a great article.
Posted by: Harry H. | May 31, 2011 at 11:04 AM
I just want to add that I feel kids born today are among most exploited generation of children ever. They are victims of a corrupt, even predatory medical-pharmaceutical cartel. The word audacious comes to mind with enormity of the lies that we have been told and accepted by many as truth. We need to bring back the 'question authority' movement that was part of the consciousness raising over the Vietnam war.
"it is the first responsibility of every citizen to question authority." - Benjamin Franklin
In exposing the truth about our kids, we need to push for accurate diagnosing.
How many of our kids showed symptoms of encephalitis but were never evaluated for it? (see NIH link below : Encephalitis scan be caused by the measles, mumps, rubella and varicella virus). How many of our kids have been mislabeled and are not receiving proper treatment for brain inflammation?
Encephalitis symptoms:
Fever that is not very high
Mild headache
Low energy and a poor appetite
Clumsiness, unsteady gait
Confusion, disorientation
Drowsiness
Irritability or poor temper control
Light sensitivity
Stiff neck and back (occasionally)
Vomiting
Symptoms in newborns and younger infants may not be as easy to recognize:
Body stiffness
Irritability and crying more often (these symptoms may get worse when the baby is picked up)
Poor feeding
Soft spot on the top of the head may bulge out more
Vomiting
Emergency symptoms:
Loss of consciousness, poor responsiveness, stupor, coma
Muscle weakness or paralysis
Seizures
Severe headache
Sudden change in mental functions:
"Flat" mood, lack of mood, or mood that is inappropriate for the situation
Impaired judgment
Inflexibility, extreme self-centeredness, inability to make a decision, or withdrawal from social interaction
Less interest in daily activities
Memory loss (amnesia), impaired short-term or long-term memory
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002388/
Posted by: Sarah | May 31, 2011 at 10:45 AM
Thank you Allison! You have put into words what so many of us feel..........we have been through this twice. Had a son who "recovered" at 5 and was doing amazingly only to have him re-injured with a huge mold exposure. Almost completely back again....
I stopped working with mainstream docs after taking him to three different pediatricians and two neurologists. Have had great success with completely alternative because they have been healing the whole body for years and are still free to think.
Trust your gut...it will take you far....sometimes the most humble of healers have taken us the furthest.
Good luck...we are all cheering for you!
Posted by: Lynn | May 31, 2011 at 10:43 AM
Thank you, Alison. Your dad's PBS special was amazing, and so gratifying to see on a network prized by the intelligentsia.
This issue nearly robbed me of my love for my country. For the first time, ever, I could understand how people could detest the USA. Any nation that could roll the dice, and send innocent children to be sacrificed in the "war on disease" is a scary nation indeed.
But then my older child reminded me of something. He said "Mom, the power ALWAYS rests with the people - they just don't know it sometimes." And he is absolutely right. And so are you. We have the power, and we are making a difference - one parent and child at a time.
God bless you for all you do . . . and God bless the good and thinking people of this nation. Never forget - WE HAVE THE POWER to make a difference.
Posted by: Parent | May 31, 2011 at 10:12 AM
Thank you Alison! It is our HUMAN right to continue to tell our children's stories. It's also the only way we are going to get research directed in the areas of treatment. Autism is not just a brain wiring difference for most of our kids, it's a whole body medical illness. To have the children injured by their vaccines with seizures, fevers and altered states leading to regression into autism and THEN deny it happens is revicitmizing the children over and over again. To deny it happened, deny the medical symptoms, deny the observations, etc, you deny any possibility to treat the injury and heal the child.
To Autism Uncle, sexism is not just given by men, woman also perpetuate sexism to other woman. The fact is that mothers are not believed and their observations not taken seriously by male or female docotrs. My pedi did not recommend referring to a neurologist (while my son was in regression) until my husband came to an appointment with me and said "HE's starring strangely"...Hmm I'd said a million things similarly but it was my husbands word that was taken seriously...I also took him to a female PHD speech pathologist whose report on my observations was entirely wrong, so inaccurate it was as if she had spoken to a different mother. That's what she means by sexism..
Posted by: Allison Chapman | May 31, 2011 at 09:59 AM
Thank you Alison!
Posted by: Natasa | May 31, 2011 at 08:29 AM
Dear Alison, I embrace you and what you have written here. I've been doing the fight for over a decade now. Although it's moving much too slowly for my taste, I do remember the day the word "vaccine" was first used on tv alongside the word autism and I celebrated the whole day. We've come a long way(and have a long way to go) baby, from the year 2000 when doctors at the Medical College of Georgia told us Joshua had autism, and we could put him in an institution or move to North Carolina, where they had better facilities(which I doubt) for children like him. Knocking down the wall of ignorance and climbing the fence of injustice has been our goal and will remain so until every last one of our childrens' human rights is fulfilled. An absolute joy to meet you this week. Love, Maurine
Posted by: Maurine Meleck | May 31, 2011 at 08:27 AM
They have also worked tirelessly to suppress the fact that there are seemingly no unvaccinated autistic kids. Up to one in five autistic kids should be unvaccinated certainly in the UK and possibly fewer in the US but numerically there should be many thousands. Why are they so hard to find and where is the definitive evidence that they exist (excluding those unvaccinated kids who may have been damaged in the womb by RhoGam (AntD etc.)? I have made exhaustive enquiries in the many hundreds of autistic families I have come into contact with without finding one hard and fast case of an autistic kid who was never vaccinated. I am greeted with derision by the paid zealots from the 250 plus agencies re-writing vaccine facts in the media for the pharma industry, but never with any evidence of there being a cohort of unvaccinated autistics.
Posted by: Tony Bateson | May 31, 2011 at 07:46 AM
Hi Alison,
You expressed beautiful how I and so many parents feel. It's horrible not to be believed. I feel like I live on an island of truth surrounded by a sea of lies. The sharks that swim in that sea keep the smaller fish in check through intimidation.
I'm always amazed when I hear people try to rewrite history with such lies as many people with autism have always been among us but somehow overlooked or fill-in-the-blank historical figure had autism and of course that whopper that vaccines have no link to autism. The biggiest lie to me is that my son has been mislabeled "autistic" when he is actually vaccine injured. It still makes me cringe. I feel I need to be true to myself and my son so I've had many of those quiet conversations. Some people get it right away. Some I've slowly converted. Some I've probably alienated (at least on that particular topic). No matter how bad the bullying gets, it should not dissuade us from speaking the truth. The truth is our greatest ally.
Posted by: Sarah | May 31, 2011 at 07:39 AM
Alison, I'm puzzled by your sexism comment "When we add to this the ‘doctor as God’ complex and the sexism still rampant in medicine today?"
Yes, Jenny McCarthy and Andrew Wakefield (mentioned later) are either vilified or treated with little respect, as are so many accomplished female or male doctors or scientists, and of course male and female authors we all know such as Habakus, Holland, Olmsted, Blaxill, Null, Haley, Hilary Butler (the list could go on forever).
It seems many of the worst "professionals" attacking anybody who criticizes immunizations are women such as NBC's Dr. Nancy Snyderman, all of the women who publicly represent the U.S. CDC (and I mean all), Dr. Alison Singer, etc.
I don't know the specific percent, but it seems the majority of pediatricians are now women, cavalierly injecting the shots on "well baby" visits (what a tragic sick joke these visits have become). Does anybody know what percent of pediatricians are women?
Thank you and your husband so much for your good fight.
Posted by: autism uncle | May 31, 2011 at 07:26 AM
Dear Alison,
I couldn't agree more! It used to be a candle in the darkness that so many of us relied on for the light of truth, because we did so often doubt ourselves. It's a wildfire now and we will not be bullied or intimidated on what has happened, and what needs to happen to stop the epidemic and heal the children. Thank you for saying it so honestly and eloquently.
Posted by: Teresa Conrick | May 31, 2011 at 07:12 AM
Thank you Alison, for putting into words things I have long felt. Being the parent of a vaccine injured child is similar to being a victim of rape or molestation in the way people react. They know something horrible has happened to you and they don't want to have to think about it.
Posted by: julie | May 31, 2011 at 07:02 AM
A new study has just been released that once again raises the question regarding a vaccine autism link:
http://www.ncbi.nlm.nih.gov/pubmed/21623535
Posted by: RAJ | May 31, 2011 at 06:35 AM