Friday, November 21, 2008

Scripting the Night Away.....

A friend, who also has a child on the Autistic Spectrum, told me recently that she’d like to move to an island where there were only families with at least one child with Autism. I offered the password; ‘Scripting the GPS’. If you don’t know what that means you can’t come on the island.

Where does the desire to further isolate our already isolated kids and families come from? A part of it is the protective maternal wish to shield our kids from a world that doesn’t understand them yet. But for me, it is also about protecting my feelings.

Children not on the Autistic Spectrum are referred to, by the Autism community as ‘Neuro Typicals’ or ‘NT’s or ‘Typicals’ for short. There is a slightly pejorative note to this. It’s not that we hate these children (I can’t, I have one of these too) but, we do hate how their effortless normal development highlights all the things going wrong with our kids. In truth my son needs to be surrounded by kids with healthy functioning Nervous Systems and social skills for modeling and perhaps friendship. But it is so painful for me to watch him not be able to do it. At the playground I watch children a year younger than Nick create imaginary worlds in the sandbox and I wilt glancing over to see my little guy repetitively parking the same car in perfect line with the swing set. At birthday parties Nick stays on the edges where he can safely navigate the sensory input while other children join in, giggle, tussle over games or toys. Again, my heart aches. Nothing is coming effortlessly for my son. Nor for me. For a social gathering I have to plan for the possible diarrhea explosion, pack foods he’s allowed to eat, stand guard that he doesn’t grab a forbidden goldfish cracker, and observe as the mother’s of typical kids witness my pain.

We’re going into the holidays with Autism again. This is fraught for me. GFCF everything free Thanksgiving dinner – where is the joy in preparing that? The prospect of buying toys he’ll never touch. The Christmas tree we can’t have because he is allergic to it. Explaining that to his NT sister. Memories of sadness from the two previous Christmas’s with Autism. I hate having to answer the cheerful questions; “How was your (insert holiday)?” All I want for Christmas is for my son not to have Autism. If I can’t have that, I’ll take an HBOT.

Our upside down country places so much hardship on such little children. A child is diagnosed with Autism every 20 minutes in the U.S. That’s 67 kids a day. If you have a boy in New Jersey their chances of having Autism are 1 out of 60 something. If you are a Somali immigrant your child’s risks are 1 out of 28. We better get a bigger island.

Have you seen the old Far Side cartoon with the crisis clinic, on fire, going over a waterfall? That’s the state of Autism in this country today. Perhaps my cheerfulness-fatigue is coming from the bizarre reality of living that daily while the world eats fruitcake.

What I really want for Christmas is not for all of my loving friends of healthy children to feel our fear and anger. It is for this new administration to quickly open and solve the Vaccine-Autism link. Obama is welcome on my Autism island if he can grasp the enormity of the Autism crisis in America and get to the bottom of it.

In the meantime, I will be gearing up to sit in front of our plastic Christmas tree with a drink with an umbrella in it. Hell, perhaps I’ll even rewrap some of last year’s Christmas presents. Makes good sense in this economy. But I will also go deep into the magic and possibility a child finds in Christmas, and wish hard on the good tidings of this season that by next Christmas these children will matter and the world will be turned right side up.

Yes We Can! (have a good Christmas)….Cheers! Alison MacNeil

Thursday, July 31, 2008

Mud in Your Eye

Egg on your face…..

I’ve been thinking a lot about eggs and looking stupid these days. Strange combination, I know. Nick’s been craving eggs a lot. Only a kid on the Autistic Spectrum could take an otherwise healthy food and turn it into an unhealthy addiction. We will come to find out soon, that his leaky gut is letting bits of undigested egg enter his bloodstream, and his body is responding by fighting this perceived intruder with anti-bodies. He has become addicted to the toxic sludge left over, the undigested proteins hanging around in his head. This is making him giggle at nothing, whine and badger us, and sing repetitively while lying under the dining room table. Yet another food will have to be removed from his diet. The list of food he can have seems to get smaller everyday.

And on to looking stupid…I do these days, feel like I look pretty stupid. Whether I am carrying Nick at almost four years old, because it is faster and easier than the fight. Or changing his diaper, because he is so far from potty training. I watch myself, unable to stop as I preach to some poor, unsuspecting mom on the playground about vaccinating safely or lecture any available friend on the latest bit of fiendish Thimerasol cover up by the government. My speech is pressured, it feels urgent. I am so involved in autism that it’s shocking when I am reminded that other people’s lives are going on as usual and they aren’t that interested.

I didn’t want to be the mom of an Autistic kid. I pictured our lives so differently at this point. It’s almost as if that life is going on in a parallel universe; we’ve been able to buy a house, we had a healthy third child, we are carefree and consumed with the daily in’s and out’s of a typical family. When I made temporary peace with Nick’s diagnosis I thought I would become ‘Posh, Warrior, Autism Mom’. I would be thin and ready for battle. I would make it look good. I would not succumb to the role of ‘Martyred Mom’ driving from appointment to therapy session, twenty pounds overweight, with a worried, tired expression and a nearly empty wallet. Yet, that is exactly what I have become.

Just as I begin to well with self pity I think about our little guys battling Autism all day. Some might say they look silly; repeating themselves obsessively under their breath, funny body postures or repetitive gestures, hands dancing oddly in front of their eyes, all the hallmarks of kids on the Autistic Spectrum. They are my heroes. All of this behavior is helping them manage one overwhelming moment after another. They make these necessary accommodations without complaining because they haven’t known life without pain and confusion. They do what they need to.

But we Autism Mommies and Daddies with our stress borne weight gain and weary expressions and our kids walking on tip toes or reciting the ABC’s ad nauseum aren’t the only ones looking foolish. In fact we look fabulous compared to the likes of Paul Offitt and Julie Gerberding. We have our integrity. They have lost touch with their humanity. I’ve just finished reading David Kirby’s Evidence of Harm, about the Thimerasol/Autism debate and I don’t know how either of them manage their guilt and complicity in hurting so many babies. I wonder what kind of accommodations they have to make to help themselves get through the day. Maintaining that level of denial is hard work.

So, if it turns out that vaccines have nothing to do with Autism I will have egg on my face. I will admit that I was wrong and I will apologize to those whose reputations I have slandered. I will look stupid, but it will have been well worth it. Healing Nick is so much more important.

And so, for all the overweight, empty walleted, harangued and harassed Autism parents – I want you to know that I am with you. We walk this road together, and I would be proud to hold your child’s hand.

Alison Macneil

Monday, July 21, 2008

I Broke Him, I'm Gonna Fix Him!

Our doctors helped us to break Nick with his vaccines. When we brought him back to them, broken, they agreed that he was sick and called it Autism. They had no idea how it happened and there wasn’t much to be done about it. When I came back to them and told them I was pretty sure vaccines had made Nick sick and wanted to try a Bio-Medical approach. They said it wasn’t the vaccines and DAN Medicine is baloney. Well, you know what? Since they don’t have a better plan… I BROKE HIM AND I’M GONNA FIX HIM!

We are getting closer to our first appointment with a DAN doctor after a year of gentle Bio-Medical care with a Naturopath. DAN stands for Defeat Autism Now, and it has come to categorize a group of physicians who came together about 18 years ago to pursue the medical treatment of Autism. I’ve been thinking a lot about the experiences we’ve had with all of the providers, doctors and therapists, since we began getting help for Nick over two years ago. It has been very hard to know who to listen to. I’ve found that as I grow to understand how complex autism is and how many different avenues of treatment we will need to pursue, the type of doctor I am craving is a Dumbledore; all knowing, all seeing, endlessly wise, kind and good. I want someone who not only grasps all the complexities of autism, but also seeks specifically to know my son. I also want this person to be respectful, educated and curious about treatment modalities other than their own.

We have had a mix of experiences. I asked parents on four Autism Yahoo groups if they had, had similar experiences to ours, and many sent me their stories. Ignorance about Autism is something many of these parents experienced, particularly with a few of the Neurologist’s these parents met with. This is a sad shame because they are often the first stop for a parent looking for a clear diagnosis for their child, and we all know how vulnerable you are at that point. ( A friend of mine describes that time saying “for a year if you said hello to me I would have burst into tears”.) One neurologist told a mother that her son would “simply grow out of autism”, another was told her son’s speech delay was due to having two older parents, and he recommended a number of toys to buy. Sometimes the ignorance is dangerous such as the Neurology Resident who told a family of a four year old, “your son will be defiant and trouble his whole life, you probably caused his Autism and you should not have anymore kids,” proceeding next to discuss medications and institutions. Or the Neurologist who told a parent “your son will be of no use and you should just accept that”, and from a well-respected Neurologist in Atlanta, “the best case scenario for your little boy will be simple math and worst case scenario - he won’t live independently”. That little boy, by the way, was recovered with a Bio-Medical approach and now is thriving in a competitive private school! Ignorant comments are certainly not isolated to Neurologists. A Psychologist told a mother “your son has autism because you are too controlling.” You might think these comments come from the dark ages when ‘abnormal’ children were frequently hidden out of sight in institutions. Not so, frighteningly enough, these comments are all pretty recent!

More common, is the deterrent doctors feel the need to present, about Bio-Medical Interventions with Autism. My son’s Developmental Pediatrician, who has been on the whole, pretty terrific, gave me an article to read on the ‘Dangers of DAN Medicine’ this spring. The article was written in 2002! Many families report that when they tell their Neurologists or Developmental Pediatricians that they are interested in DAN or have begun Bio-Medical treatment, their doctors will no longer see them. One Neurologist, who mistook the PANDAS (Pediatric Auto-Immune Neuro-Psychiatric Disorders) virus for seizures asked “you are not doing any crazy diets or supplements are you?” A Pediatric Gastroenterologist ,upon hearing that a mother was implementing the SCD Diet (Specific Carbohydrate Diet) for her son’s chronic diarrhea, refused to examine him and warned of the dangers of vitamins, telling her “you are nuts to go to a DAN doctor.” A General Practitioner, when told the mother was looking into Bio-Medical treatment said “good for you but I can’t help you.” A Pediatrician stated “don’t take your son to see someone who only wants your money, tries to sell you things, and promises false hopes.” Another Pediatrician, who wanted to add the MMR vaccine as the 5th shot of the day to save the mom a trip, said “parents like you do more harm to your children by believing in that stuff.”

My Pediatrician provided detailed explanation as to how safe the vaccines were when I questioned him before vaccinating Nick. I asked him if he had to vaccinate his kids again, would he do it? He was unequivocal in his answer –yes! When I called him in tears a year and a half later to report that the specialist had diagnosed Nick with Autism, he told me he too had a child on the spectrum! Uh…HELLO!! One afternoon when I didn’t have my seven year old with me, she absorbs everything said around her, I asked my Pediatrician if he had read Changing the Course of Autism by Bryan Jepson, MD. He hadn’t and he wasn’t very curious about it. I told him I found his lack of curiosity alarming given the epidemic rise in Autism cases. A week later he called about a different issue and told me he had bought the book and would read it this summer. I hope he does and I’d love to talk to him about it. Maybe change is coming or maybe I ‘m changing Pediatricians.

It’s terribly hard to feel confident bringing up Bio-medical treatment with mainstream physicians. I would like to think that every one of us, all the mom’s attempting to recover our kids from Autism Bio-Medically are in the room with you when you have appointments like these. I imagine this like the cell phone commercial ,you know the “Can You hear me now” guy, with his enormous team behind him. We are all in there silently standing behind you supporting you.

While sitting on our porch the other night, having a glass of wine, I was amazed at the iridescent sparkle coming off a rock in the moonlight. I decided to take this as a magical sign, that it was the right thing to take Nick to a DAN doctor now. This was probably a combination of the wine and summer heat. But moms with kids in desperate circumstances are familiar with fits of superstition. We wish on the fist star we see or pick up a penny lying heads up, anything we can wish on for our children’s recovery. Outside picking up after the dog the next morning, I realized that my magical sign was in fact a bit of sequin sewn on a child’s plastic purse lying in a neighbor’s garden. I worry my hopes for Nicks recovery from autism are as flimsy as that child’s plastic purse?

I can’t remember if it was Jepson or McCandless who used this analogy; that a parent with a kid on the spectrum is like a parent who can’t swim, sitting on a dock, while their child is drowning in the water. I find this analogy agonizing because I am not good at a lot of things; terrible housekeeper, no good at keeping a secret, and I can’t hit a baseball or remember the rules to most card games, but I am a damn fine swimmer. The analogy goes on to say that the parent on the dock finds a small, thin, worn piece of rope and attempts to rescue the child with it. The thin rope representing Bio-Medical and DAN intervention in Autism. If I can’t jump in the water, I’m going to have to try the worn rope because the alternative is to let Nick drown.

Can you hear me now?

Alison MacNeil

Tuesday, July 15, 2008

Go Ahead Roll the Dice!

We were a full year into Nick’s therapy before it dawned on me that he was physically ill with Autism, not just neurologically impacted. Funny that this happened to us, we started down the diagnostic path because Nick’s ears were so filled with fluid he wasn’t hearing properly. For months we told ourselves he was speech delayed because of that, it wasn’t Autism. We saw him as medically sick. Then we moved into the world of Behavioral Therapy and ABA vs. Floortime, Speech, Occupational and Physical Therapy all the while dragging this droopy, lethargic boy along. I can’t tell you how many times I had to cajole and jolly this little boy through treatment sessions. His providers have commented that he seems disinterested or has inconsistent energy or seems irritable. I think he’s been in pain, I think he is malnutritioned and worn out from constant diarrhea. I wouldn’t want to play or learn if I felt like that either and neither would you!

The general consensus is that Autism is a Neurological Disorder. Your child is sent first for a Neuro-Psych or Developmental Evaluation and the treatment plan is most often many, many hours of Applied Behavioral Analysis (ABA). What then about all the other components of the disorder which physically manifest in many other systems and organs in the body? The majority of these are dismissed every day by practitioners as a coincidence, or in my son’s case – the result of poor diet. Almost every mother of a child on the spectrum has a sick kid, and these kids get sick in very different ways.

Some parent’s report endless, unresolving ear infections, with subsequent long and repeated courses of anti-biotics, often leading to ear tubes and adenoid removal. More describe chronic upper-respiratory infections with constant gluey mucus, unrelenting cough and asthma. As we were led to believe our son’s diarrhea, chronic since he stopped nursing at 16 months, was not connected to his PDD diagnosis. So many of these children have terrible constipation or alternate between constipation and diarrhea. Verbal ASD kids will tell you they have terrible stomach pain or reflux. You often see autistic kids in funny postures such as leaning their tummy’s against the couch. Only within the last few years have parents and doctors come to know that these kids are trying to relieve the awful pain in their belly’s. Imagining the experience of a child in pain without language is almost too difficult to face. And yet we primarily address nonverbal kid’s head-banging or funny noises with behavioral interventions! The reflux some kids experience is dismissed as an immature GI system, like colic. Eczema so distracting kids can’t sit still or sleep, diaper rash with boils that burn the skin and leave permanent scars, frightening seizure disorders or night terrors with arching backs, screaming and dissociated, all considered a coincidence. And food…we were told we had gotten into bad habits, we either nursed too long or not long enough. The food allergies so many of these kids have, we were told that they were a coincidence as well. The food intolerances or sensitivities our kids are plagued with, rarely will an allergist take them seriously. What about the viruses, bacteria, parasites that are the norm in the autism population?

Why are so many autistic kids sick? I believe, and many parents of vaccinated kids on the spectrum agree that our kids were injured by their vaccines, the high number, the ingredients, and the schedule with which they were administered. I think my son’s immune system was hit too hard, too quickly and with ingredients such as aluminum and mercury which synergistically exacerbated his decline. I think vaccines are vital to the health of the world’s children. But, as they are currently provided, many children (perhaps 1 out of 150) like Nick, will get very sick from them. We need better vaccines and we need them immediately. Right now if you vaccinate according to the current pediatric schedule you are rolling the dice with autism.

Why on earth would you treat a multi-system disorder with Behavioral Therapy? Further more, how could we expect that a child in this much discomfort sit through, let alone learn and fully participate in 30 hours a week of Behavioral therapy? Behavioral therapy is paramount to our children’s ability to get better but they won’t get much from it if they feel awful. We have to heal their bodies as we try to organize their minds. In increasing numbers, parents are healing their kids only to find the Autism diagnosis no longer is applicable.

I will not put my child through one more evaluation with a medical doctor who does not specialize in working with kids on the Autistic Spectrum. I will not take the advice of a physician about; anesthesia, dental work, GI issues, diet, medication, vision, etc unless they specialize in working with our kids! Doctors who are not fluent in the medical problems associated with autism do our kids too much harm!

If you have a child or know of a child on the Autistic Spectrum who suffers from a medical problem I did not list, please email me at so that my information can grow more complete. And I wish for all our sick kids healing and great health.

Thank you, Alison MacNeil

Tuesday, July 1, 2008

Where is the outrage?

It is a hard time to find space for Autism in the news today between our election, the political crisis in Zimbabwe, the war, our economy, the price of gas....I could go on and on. One could argue that without a sudden cure or conclusive evidence of a cause, Autism isn't headline material. What irks me though, is that just below the surface, with minimal digging, there are startling facts about the relationship between vaccines and Autism and none of it ever makes it into mainstream media!

I am going to list a few of the staggering pieces of information I guarantee I wouldn’t know about, if we weren't struggling to pull Nick out of Autism. Please share these with anyone who will listen.

1.David Kirby, author of Evidence of Harm, former NYT journalist, and frequent blogger on the Huffington Post, in his presentation to Parliament earlier this spring, states that the newest Autism prevalence data, the 1out of 150 actually dates from 2002.

2.We throw the word thimerosal around like it is the only bad guy in the vaccine debate. But that's not true. When Thimerosal was supposedly eliminated or decreased, the preservative Aluminum was increased. Aluminum is a known Neuro-toxin, it over stimulates the immune system, it damages mitochondria, and it works synergistically with mercury. And there is Aluminum in more vaccines today and in greater amounts!

3.The CDC conceded that Hannah Poling was injured by vaccines due to a "rare" Mitochondrial Disorder, rendering her case the exception. However, it turns out that the susceptibility for Mitochondrial dysfunction, is actually as high as 1 out of 50 children. What pushes the susceptibility into a disorder? 75% of mitochondrial disorders are caused by environmental triggers. Mitochondria are particularly vulnerable to; mercury, aluminum, pesticides, formaldehyde, alcohol, and AZT. Some of the markers for mitochondrial disorder; weak muscle tone, fatigue, and poor digestion are omni-present in the Autism population. As the sign of a dad a the DC March read "RARE MITOCHONDRIAL DISORDER MY *SS!"

4.In 2000 the CDC held a secret meeting in Simpsonwood, Georgiato discuss the increasing evidence of link between autism and thimerosal and the transcript, in the words of Robert Kennedy, Jr “is the most horrifying thing you can ever read!” Just google Simpsonwood Transcript and you can read for yourself but those tight on time, I am including a few choice quotes. Dr. Johnson, p.198 “This association leads me to favor a recommendation that infants up to two years old not be immunized with thimerosal containing vaccines,” he continues mentioning the birth of a recent Grandson, “I do not want that Grandson to get a thimerosal containing vaccine until we know better what is going on.” Dr. Weil, there representing the American Academy of Pediatrics states, p.207, “The number of dose related relationships are linear and statistically significant. You can play with this all you want. They are linear. They are statistically significant.” On p.208 he continues “we don’t see that kind of genetic change in 30 years.” Dr. Clemens states, p247-248 “I wonder how on earth we ae going to handle it from here.”

5.There was no safety level established for direct injection of mercury into the bloodstream, there has never been any type of safety level established for any exposure to the type of mercury thimerosal is, ethylmercury. The FDA and CDC had to rely on the safety levels established by the EPA for non injected mercury and not ethylmercury! The CDC and FDA checked all of the established safety levels for non injected mercury exposure and reported during a Congressional Investigation that thimerosal in vaccines caused infants to exceed safety levels established by all four government agencies including their own. Those agencies are the EPA, World Health Organization (WHO), FDA, and ATSDR which is the Agency for Toxic Substances and Disease Registry. To date the FDA and CDC still claim that thimerosal in vaccines only exceeded the EPA safety limits. Utilizing Merck Pharmaceutical's Minimum Risk levels against the EPA safe limits- a child was at risk of mercury overdose at each vaccination point if they followed the Childhood Vaccination Schedule (birth, 1 month, 2 months, 4 months, 6 months, 15-18 months).80% of the Flu Vaccine being produced today contain full doses of thimerosal. The flu shot is strongly recommended as of 2004, for all infants, all children every year until the age of 5 and all pregnant women.

As I write this I am so upset my hands are shaking. For those of you lucky enough to have dodged the Autism bullet please lend a hand to those of us struggling to get the word out about the need to clean up our vaccines. If the Autism mom's and dad's are the only one's screaming and yelling about this, we look crazy and frankly raising a child with so many sensitivities and obstacles to learning and connecting to people is enough to make one crazy already.

Please let not one more child be Neuro-toxically damaged by vaccines. Thank you, Alison MacNeil

This is like the bumper sticker IF YOU AREN'T OUTRAGED, YOU AREN'T PAYING ATTENTION!

Sunday, June 22, 2008

A strange place to start

Along the march route during the Green Our Vaccines Rally in DC in early June it occurred to me that none of us would have been there that day if 'it' hadn't really happened, if our kids hadn't been made so sick by their vaccines. We had better things to be doing that day. It was excruciatingly hot, expensive and inconvenient and huge sacrifices had been made by all of the families attending to get ourselves there and responsibilities covered at home....but there we were, 8, 000 of us.
When I held my picture of Nick up with the 8,000 other pictures while Sam Cooke played it became crystal clear to me. This did happen to all of us and countless others and the numbers continue to rise. The sign I thought so original; a picture of Nick at 8 months- a fat happy baby and then at sixteen months-swollen, vacant, agitated, dark black circles under his eyes, wheezing, full of mucus and outrageous diarrhea, was everywhere. I counted thirteen that were the same.
I came back to Boston with a conviction and courage that had been missing before. The reason the dietary changes and biomedical treatment are working is because we are healing him, slowly and purposefully from an assault on his immune system. Like so many other families, we are finding that our children diagnosed on the Autistic Spectrum are physically sick. Despite the bruising and rage inducing fact that our pediatricians, neurologists, GI's and on and on don't believe us and think we are crazy, we persevere because our children are slowly getting better.
Prior to the March my suspicions were growing stronger. We started like many families do with 20 hours of home-based Floortime and ABA services, the rounds of depressing diagnostic evaluations, the transition planning and IEP and then into the world of Special Education parent. We work with speech therapists, PT's, OT's, and Developmental Specialists, most incredibly talented and loving but something was missing. The more I read and I read everything I could get my hands on; Jepson, Bock, McCandless.....Nick fit the picture. His ear infections and need for three sets of ear tubes weren't just a coincidence with the Autism diagnosis. The fact he had, had diarrhea for three years wasn't because he was a picky eater. His low muscle tone and lethargy and anxiousness and poor motor planning were part of a deeper picture. A picture shared by many, many children. My son, like so many others, had been neuro-toxically injured by his vaccines.
I disagreed with my husband initially. I thought is was too simple an explanation 'Vaccines cause Autism'..what about our seven year old daughter? She's ok. What about all the children who don't get sick from their vaccines? It seemed too linear, too inline for his male need for a culprit to blame. And after all, it seemed inconceivable, too frightening to be possible. Then our arguments blended into the blame game. I after all, as the CEO of medical care in our family, had driven Nick to these appointments, asked the nervous questions "these really are safe?" and accepted the given explanation. If this was true, should I throw myself on a massive funeral pyre like all the other mothers who had done the same and ruined our children?
I still battle gravely with my guilt. How could I have done this to such a vulnerable being? This pain is only slightly tempered with the vision of pediatricians having to slowly come to terms over the next few years with their devastating role in the destruction of a generation of children. But I go forward with energy because Nick is getting a little bit better all the time. If he can go forward so can I!
I read recently, in Andrew Solomon's piece in New York Magazine, that the head of NIH has come to the conclusion that the parent's know more than the doctors at this point. Yes, this is abundantly clear to me. As my experience has shown me, it is the mommies that will get you through. The best information, resources, ideas, support and courage I have received has come from other parents daring to try to fix the damage vaccines have done.
I believe vaccines save lives. I wish the shots babies everywhere will receive tomorrow were clean of horrible preservatives. And I wish the vaccine schedule wasn't driven by pharmaceutical interests. What I wish for most of all, beyond the healing of all of these injured children is immediate ownership by the medical community that 'this happened'... vaccines made our kids sick and now we are compelled to heal them. Until that happens I am going to write to keep myself going and any other parent on the same journey that wants support. I believe you. Alison MacNeil

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