Regression, regression, regression.
That's the theme of much of the e-mail this column has received, sparked by two recent installments. The first reported confirmation by a University of Washington study that parents are right when they say they have watched their children lose language and social skills and become autistic. The study reviewed first-birthday videos, which documented that regression had come afterward.
The other article reviewed 83 reports filed during the 1990s in which doctors or parents suspected a link between vaccinations and the onset of autism.
Monday's column featured a parent who filed such a report -- to the federal Vaccine Adverse Event Reporting System -- in 1996. That was well before a possible link became a matter of public debate later in the decade.
In 1998 a British doctor published a study that suggested a possible link between the MMR -- measles, mumps, rubella -- vaccine and autism. The next year the Centers for Disease Control and Prevention and the American Academy of Pediatrics urged that a mercury-based preservative called thimerosal be phased out of childhood vaccines as soon as possible.
Health authorities -- including the CDC and AAP -- dismiss any link between vaccines and autism. Some as-yet-unidentified environmental factor might play a role, they say, but vaccines are not that factor.
Here are some e-mail comments by parents to Age of Autism. Two of the correspondents agreed to be identified by name.
The cases sound so familiar to my granddaughter's. On Jan. 20, 1997, my granddaughter received a DPT-Hib shot (diphtheria-pertussis-tetanus and haemophilus influenzae type B); her leg swelled and got very red for about five hours and she cried a high pitch scream. Would not sleep.
My grandchild's skills started to disappear and then she started having seizures. She was diagnosed with autism. Now at the age of 9 she does not talk; has seizures; every day she wears diapers, cannot feed herself. I know it was the shot because everything changed about her as soon as the shot was given.
She was put on the Vaccine Adverse Event Reporting System not long after she was damaged.
After I read that column (about first-birthday videos documenting subsequent regression), I got the courage to view one of my family's home videos, taken on Easter in 2002 when my sons were 1 and 4.
While I knew that my son Matthew had regressed (he had lost about 50 words so that was hard to miss), I wasn't certain about other developmental milestones -- after all, I wasn't looking for autism. I have listened to and read the work of many experts who state that autism is present from birth and that parents probably miss the earlier signs.
So, I just wasn't sure. Had Matthew once had normal eye contact? Normal engagement? Had he answered to his name? Had he pointed to show us things, brought us things? Had he done all those normal things or had the absence been subtle and I hadn't noticed?
What I saw on the video, Easter 2002, when Matthew is 16 months old, simply stunned me. In the 20-minute tape he does all the developmental milestones listed above, as well as more.
What I saw was a completely normal toddler, joyfully opening his Easter basket with his older brother, fully engaged with what was going on around him. He answers questions, brings my husband things from his basket, points to show us something, responds to his name -- and is alive, aware and happy in a different way than he is now.
Honestly, I cried hysterically while viewing the video, and when I called my husband he thought someone must have gotten in a car accident.
I think my husband was equally surprised at all of the normal development Matthew displayed on the video. Time really plays with your memory and the last couple of years have been a blur to us. Although my husband was not nearly as emotional as myself(!), he did and does feel anger.
My older son Jay, who just turned 8, also viewed the video. His viewing was punctuated with such comments as "Wow, did you see Matthew do that?" and "Wow, you only had to say Matthew's name ONCE and he turned" (unlike now where we must say it several times to gain attention).
As you can imagine, Jay is wise beyond his years and turned to me after and said, "Have you figured out what happened to Matthew or are you still working on it?"
Knowing Matthew was so normal up to that point leaves me feeling a huge "what if." I am more determined than ever to do everything in my power to restore my son back to the child he was meant to be.
- Jeannie Meijer, Acton, Mass.
Our daughter was born in August 1995. I may have my dates off ... but she was given the MMR in or around Oct 1996. She was progressing nicely in language skills at that time. A few weeks after the shot, we traveled from New Jersey to Florida on vacation. While there, she got sick, a cold, and was given an antibiotic.
Not being attuned to autism, we didn't immediately focus on the reversal of her language skills, and the sudden temperamental behavior from what had been an easygoing girl. Eventually, she was diagnosed with a language deficit and was diagnosed as autistic. With some wonderful work at the JFK You and Me Program in Edison, N.J., she is now an almost completely normal fifth grader, in a mainstream school, without an aide.
When we got the diagnosis of autism for our daughter, we were in the seventh month of pregnancy for our third child. We immediately read everything we could find. By 1999, the vaccination/MMR story was out there, and we presented it to our pediatrician. He agreed to postpone the immunizations as long as possible, and then give them one at a time.
One theory was that after the mumps, measles and rubella shots were lumped into one (MMR), the observed rate of autistic children rose dramatically. Too much vaccination, often given to a too small child. Our son might have been approaching 50 pounds when he got the first shot ... as we faced the medical requirements of entering preschool ... it didn't work. He was diagnosed at 4, although he had better communication skills than our daughter did at that age.
Even today, it is apparent that the nature of his issues are different than those that affected my daughter.
I, too, am a parent who is convinced my child was adversely affected by the MMR vaccine. Over the years he slowly regressed into a high-functioning form of autism.
We took him to a DAN (Defeat Autism Now!) doctor some months ago and he was found to have no significant levels of any toxic metals, but his immune system was totally out of kilter.
He showed no immunity at all to measles (despite two MMR injections) combined with an ultra-high immunity to rubella. In addition he had score of 24 on the myelin basic protein autoantibodies test when the norm is under 5. This indicates his autoimmune system is attacking the myelin shield in the brain. We are now considering ways to treat this.
I have taken a little time to research vaccinations on the Internet and found some fascinating information. Israel is a medically advanced country where the life expectancy is in fact higher than in the U.S., while cases of autism occurring there are considerably lower.
What I learned is that in Israel, which has an extensive vaccination program, they do not give them MMR. Rather they vaccinate young children for measles only and vaccinate them for mumps and rubella only when they are older. Their reasoning seems to be that since mumps and rubella are not known to occur in very young children, why vaccinate them for something they cannot catch?
This makes a great deal of sense to me in that if you are vaccinating children for a disease to which by nature they are not susceptible, this could indeed harm the autoimmune system.
- Harry Eisenberg, Glen Rock, N.J.
My son, now 14, was harmed by thimerosal. I would be happy to provide all of his medical records, my own medical records from labor and delivery onward ... anything to help this cause.
I also can show documentation by video of the days after the vaccination that sent his world into darkness. It is eerie to know how and when it happened. Heartbreaking.
At 14 my son understands that he has autism and why. He is livid with the "people who did this to him." Every day he says he wants to go to the hospital to get the shot to get rid of autism. Every day.
This ongoing series on the roots and rise of autism welcomes reader comment. E-mail: firstname.lastname@example.org