Autism, vaccination and primary immune deficiency
With a history of Primary Immune Deficiency and after 4 months with a lung infection (and on atibiotic number 4 at that point), the doc was waiting for me to get better to give me the pneumococcal and meningococcal vaccines.  These are both conditions are commonly caused by Haemophilus Influenzae, one of which is known as Hib. Then on top of the ear, nose, lung infections I was fighting, I developed a severe throat infection. It was hard to speak and painful to swallow and I felt like something was stuck in my throat. I was so looking forward to going back to the doc the next day and with luck the latest results had come back and had finally isolated which bug it was. I had pneumonia and the bug was Haemophilus Influenzae which was now also infecting my throat.
Haemophilus Influenzae is a bug that normally doesn’t effect adults. They have mostly developed natural immunity to it. In fact many people carry it, harmlessly. But it does infect people with immune deficiency, the elderly, and Hib kills 5-10% of the children who can develop pneumonia or meningitis from it and leaves others severely brain injured. I’m just relieved that most children are now vaccinated against it.
With vaccination fear so rampant, people are leaving many kids unvaccinated, especially autistic children. I’m an autism consultant. I work with kids and have worked with 100s of children with autism. Being immune deficient I also am more susceptible to their bugs than most people and a number of times I had to stop working in special schools because I was getting a higher and higher viral load, infections and chronic fatigue kept flaring up.
But only 10-20% of children with autism may have significant primary immune deficiency (see studies by Gupta), so the other 80% may have no difficulty responding properly to vaccines which may save their lives. A standard saliva swab for IgA levels in the children of families afraid of vaccination would help. If their IgA levels are normal, chances are they’ll have healthy enough immunity to respond properly to vaccinations which may save them from life threatening bugs. Then when and if their immunity tests in the normal range they should have no adverse reaction to vaccinations.
As someone with IgA deficiency (I’ve also had low white cells, now ok, and have low IgG and am treating D Deficiency) I would have had a problem developing immunity from vaccinations but equally I couldn’t develop immunity from catching bugs either. So the theory that someone like me would naturally develop resistance through exposure is a fallacy, a dangerous one.
And born in 1963 there weren’t vaccinations for Hib then, nor for measles or mumps and I caught the full blown version of measles and mumps when I was about 2. Did I develop natural immunity to measles after that?
In my 30s after treatment for immune deficiency my immune system was recovering. As a result bugs I’d been carrying began to flare up into symptoms as my white cells now recognised them.
Result: I developed fever, pustules everywhere, vomiting, nausea, diarrhea. I was diagnosed with the measles. Two others around me caught the virus, also diagnosed as measles. Then my measles went away and came back up six weeks later. Again, to the doctors dismay, measles was again diagnosed. These flare ups occured every 6 weeks for the next 10 months. At first the doctor thought this was impossible. People only get measles once. Then we learned, yes, most do. But without a healthy working immune system I had walked around carrying measles for 36 years, passing the virus to unvaccinated adults and children along the way. Without enough immunoglobulins you can’t signal your white cells properly (if you have enough in the first place) so you don’t develop immunity to the bugs you’ve had and you don’t fully fight off the one’s you have. You can catch the same one over and over and have flare ups of the one’s you have.
At 37 with the help of immune specialists I got normal white cell count and at 38 I got normal IgA levels. I stayed healthy until this year, aged 46. I always had a particular soft spot for those kids I worked with who also tested as having Primary Immune Deficiency. I knew their tough road ahead and how important it was that others around them pass them as few life threatening bugs as possible. I was glad we had vaccinated children at their schools because they themselves may not respond well to vaccines so living in a vaccinated world would help them live fuller, healthier lives.
There is no reason for healthy children with no history of recurrent infections and no family history of immune disorders to go unvaccinated. It makes for a dangerous world for those of us who can’t develop natural immunity and who will pass bugs to unvaccinated populations. There is also every reason to test early for Primary Immune Deficiency and put in place the programs to help those with it stay as healthy as possible.
Donna Williams, Dip Ed, BA Hons.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com
Thank you for sharing your experience. I plan to link to this post so that parents thinking twice about vaccinations can see that there is a simple test to determine if their child is likely to have an averse reaction. Thank you.
The Saliva swab test for Secretory IgA (which lines the mucous membranes throughout the body) is far less invasive than the blood test for Serum IgA and generally is Serum IgA is low, Secretory IgA levels will reflect this.
As an interesting aside many people don’t know that those with IgA deficiency will usually have a false negative to Coeliac tests and most with IgA can’t digest gluten which long term can cause significant bowel and absorption problems and starve the blood and brain of nutrients necessary to information processing, development and health as the absorption capacity of the progressively damaged bowel through flattened villi shrinks from the surface area of a football field to that of a dining room table. A urine test for undigested proteins in the same person will show inability to digest gluten.
So a saliva swab for IgA levels can also be a significant indicator of which children will have far higher likelihood of benefiting from a GF diet.
And this aversion to vaccination is also not to mention harmful and dangerous to those of us (regardless of neurology) who need to use long term doses of prednisone or other immune-suppressing drugs (whether for severe asthma, inability to produce certain hormones, organ transplants, autoimmune disease, or many other conditions), as well as conditions like bronchiectasis (which I have) that are not only usually the result of repeat infections (many of which can be vaccinated for), but which also render a person even if their immune system is healthy, unable to clear lung infections, which can cause more of the same damage leading sometimes to a circular pattern that can eventually result in death if not very carefully treated.
When I see people not vaccinating kids who are perfectly fine being vaccinated, I see people who have apparently decided that those of us with severe health problems are not worthy of being alive. And I have actually seen some with that sentiment — that if all the diseases come back bigtime then the weak will die off young and this will strengthen the rest of the population. As someone who thinks everyone matters, not just healthy nondisabled people, I find that attitude… just awful, selfish, cruel, and a lot of other things. And as for those who just never thought of it, well after reading this they will not have that excuse anymore.
Yeah, I do think there is the feeling that ill people should just ‘die away’ but many ill people have contributed beauty, delight, humor, wonder, innovation on the smallest community levels and globally, so that Nazism is so narrow and archaic. It’s about souls and as long as they have bodies its about the worth of all lives.
Amanda,
As someone who absolutely does believe that everyone matters, I am frustrated by your comment. I have 5 children who all have varying degrees of immune dysfunction. While none of them are seriously disabled or life threatened by it (at this point), my oldest & 3rd born in particular got a little bit worse with each shot series. My oldest developed full blown Tourette’s after his first booster series. (His IgA was fine when he was tested about a year later, btw)
Each one of my 3 oldest kids has developed more issues with each vax series. I finally had done enough of my own research on the issue that I stopped vaxxing after my 4th’s 1yr series (who developed a viral infection after that series which the dermatologist said only occurs in people with weak immune systems).
It could be coincidental – after all Tourette’s generally gets worse when puberty starts – but Tourette’s is also an autoimmune disease & vaccination stimulates the immune system – not a good combination. It is clear that both sides of the vax debate are hyping the issue to serve their agenda, but there is also sufficient room & reason for me to question the risk vs. benefit for my children.
Should I risk the functioning & future independence of my children because it MIGHT save a stranger’s life? I don’t think so.
Do I worry about my own children contracting something life threatening & not having the immunity to fight it off? Yes, at times.
But since I spend pretty much EVERY day worrying about how my eldest with Tourette’s (as well as considerable memory & attention issues), in addition to my 3rd born with brain damage from my having a dental amalgam replaced when I was 5 mos pregnant with him are going to survive when my DH & I are gone – it becomes secondary to the more immediate crisis of leaving them some kind of quality of life with which to face that future.
Without the ability to guarantee to someone that a vaccination will not have a negative effect on their child – a guarantee that no one but God can make at this point – you should refrain from judging people who are unwilling to sacrifice their child on the altar of herd immunity.
I had said….There is no reason for healthy children with no history of recurrent infections and no family history of immune disorders to go unvaccinated. It makes for a dangerous world for those of us who can’t develop natural immunity and who will pass bugs to unvaccinated populations. There is also every reason to test early for Primary Immune Deficiency and put in place the programs to help those with it stay as healthy as possible. Your family clearly has a history of immune dysfunction so vaccination decisions would not be easy and would need to be weighed up.
Yes, but that was what I was attempting to address in large part – the medical field considers my family to have “no history of recurrent infections and no family history of immune disorders”. Nor do my children test positive for Primary Immune Deficiency.
After reading up on auto-immunity (the one common thread in my children’s varied issues), esp. doing my best to follow the current research on it as well as inflammation, I came to the conclusion that it would be too risky to vaccinate as long as their immune systems are not reacting normally. Mainstream medicine, for the most part, disagrees with me and would argue that I have no valid reason to avoid them.
Someone like Amanda could easily see us from outside looking in & believe that all is fine (my 17yo is still able to keep his tics mostly hidden at home at this point) & be angry that we don’t vaccinate, but the reality is neither so simple nor so careless.
I can’t base my decision on mainstream medicine’s herd standard, nor am I indifferent to (or have some kind of Darwinian agenda against) those who are vulnerable, but because I have to do what I believe is best for my children – it’s the only thing I can do when all those factors are otherwise in conflict.
I understand, and yes, there are many greys. I do thing immune dysfunction is part of the spectrum of immune deficiency and needs to be recognised because those with immune dysfunction are at risk and need special measures which recognise their needs. For the past 8 years I had remission from the main struggles with my immune deficiency. Sure, I still had bouts of arthritis and a flu which caused brain inflammation and blindness in one eye for 3 months but by comparison with full blown effects of primary immune deficiency I was happily believing I’d ‘overcome it’. So I know what it is to be immunologically vulnerable as well as what it is to be immune deficient so I can see from both those angles. I wish you and your family well and I’m certainly one who knows the choices aren’t easy.
Thanks, donna! And I do very much appreciate you blogging about your experiences. It has helped me to better empathize with my kids!
I agree with you. Immune Deficiency plays a major role in Autism. My five yr old daughter has Autism and she also has Commom Variable Immune Deficiency. She was born with the immune deficiency but not the autism. She didn’t develop Autism until later on , after her vaccinations. I have written a book about her at http://www.abigailsstory.com Thanks