Stories from the Autism Epidemic
"No Rest for Parsippany Family Warning of Vaccine-Autism Tie" - Media article on the Gallup family by Colleen O'Dea published March 6, 2006 in the Daily Record
Eric's Story and the Autism Epidemic - an open letter to parents from our co-founder, Ray Gallup
"From Here to Delaware" - a short story by Ray's daughter, Julie Gallup at age 16
"My Brother Eric" - a short essay about living with a sibling with autism, by Julie Gallup
"The Wrongs of Disability Rights" - A composition by Julie Gallup
No Rest for Parsippany Family
Warning of Vaccine-Autism Tie
PARSIPPANY -- For Raymond Gallup,
second to the incomprehensible pain of having a son who is autistic is the
frustration of trying to educate the public about his beliefs that a childhood
vaccine was responsible for Eric's autism.
Before I tell my story about my son, Eric Gallup, I want to mention some important facts. Autism is increasing at an alarming rate. Five years ago, it was 1 in 500 that had autism spectrum disorders according to the Centers for Disease Control (CDC). Recently, the CDC and the American Academy of Pediatrics (AAP) said that 1 in 6 children are diagnosed with a developmental disorder and/or behavioral problem. Also, the CDC and AAP said that 1 in 166 children are diagnosed with an autism spectrum disorder.
I have been documenting the autism epidemic from the 1990s using the US Department of Education figures. Here are the latest figures.
I know that the autism epidemic can’t be genetic in nature. There never has been nor never will be a genetic epidemic. Like many parents who know their children, I know that vaccines are responsible for my son’s autism disorder. In Washington DC there is concern about Social Security and Medicare/Medicaid running out of money. The politicians are only thinking of the growing numbers of the elderly putting a strain on system. They don’t realize that in 5 to 10 years from now, there will be a growing number of children with autism that will reach adulthood and will be eligible to collect SSI and Medicare benefits. What will happen then? Will the Federal government have unlimited resources to deal with this crisis. Will the states have unlimited resources to deal with this crisis?
The vaccine link to autism goes beyond the thimerosal and measles-mumps-rubella (MMR) vaccine as far as I’m concerned. Many in the medical establishment and Federal government health agencies deny a vaccine link to autism. Despite the denial, the Food and Drug Administration (FDA) keeps a record of adverse reactions to vaccines. It is called the Vaccine Adverse Event Reporting System (VAERS).
Eric Gallup was
born normal on
Vijendra Singh, PhD. of
In April 1995,
September 1997 and November 2001 I went to the National Institutes of Health
In 2002, we took Eric to see Dr. Arthur Krigsman, a gastroenterologist. Dr. Krigsman found that Eric had colitis and a very painful, quarter-size stomach tissue in Eric’s throat.
In 2002, Eric started to develop aggressions where he would bite, head-butt, kick, scratch and pull hair. Up to February 2004, we had to call the police numerous times and Eric had to be taken to the hospital. He was on various anti-depressant medications over those two years and in February 2003, Eric broke my left index finger with his teeth almost amputating it off. Eric grew to be 6’2” tall and I am 5’10” so he was a handful. We received no respite care from Eric’s school or any state agency. We lived a life of hell and we were under siege during that time. When Eric had an aggression, we would have to go behind our bedroom or bathroom doors and lock them so Eric couldn’t hurt us. Eric broke two bedroom doors by kicking on them and we had to replace them with stronger doors that were kick-proof.
aggressions at school and was suspended various times. In February 2004, Eric
was terminated from school and when I took Eric to the store he had another
aggression. The police were called and Eric was taken to the hospital where he
was born and put in their psychiatric unit. After a couple of weeks, we were
told by the hospital that he would either have to be taken home or put in
He was released and taken to Kennedy Krieger Institute where they treated him for his aggressions.
In August 2004 he was released from Kennedy Krieger Institute and was placed in an out-of-state residential school. When we initially left him there, he was running to the door to get out because he wanted to go home with us. Since that time he has gotten better but he is on heavy duty medication such as haldol and adivan. It takes us 2 and ½ hours to drive one way to see Eric so we only see him every other weekend. In January 2005, another patient punched Eric in the eye giving Eric a black eye. Eric was on a couch and pushed the other patient and the patient took exception and punched Eric. I worry about Eric constantly and at times I wonder what his and our lives would be like if he wasn’t damaged by the MMR vaccine. Many a time, I shed a tear for him. In particular, Helen and I had to make funeral arrangements for Eric because the state said they had money for this. It was very morbid and stressful for Helen and I to do this. One person asked me why couldn’t the state do this and not cause us more grief. I had no answer for them.
Many times when we pick up Eric to go out for lunch he will ask us about “home” in his picture/word book. It is difficult to respond to him and we have to say not now. During the last year we have brought Eric home for the weekend but it is difficult for myself emotionally, the fact that Eric is no longer living with us. I’m sure that we won’t be the first family dealing with this. Unfortunately, we won’t be the last family dealing with a situation such as this.
Recently, I had a disagreement over Eric’s medications at the school that he attends. They have him on zyprexa, haldol, adivan and lithium. I asked them to put Eric on extra doses of Vitamin B6 to reduce the tremors he has from the medications. Eric also has drooling problems and he stares off as he is so heavily medicated.
We now have to look for another facility for Eric because of our disagreement. Basically, the state, the education system and the medical community want our children vaccinated. When something goes wrong then none of these organizations are there to help. They leave it in the parent’s hands. It isn’t their problem, it is the problem for the families involved.
The most telling part of the vaccine/autism link controversy is how three researchers who have looked into the autoimmune, MMR vaccine link to autism have been dealt with. This is what has actually happened. Keep in mind that if these researchers were politicians and this happened to them it would be reported all over the media.
Unfortunately because they are independent researchers who are trying to help families and children with autism, their story is ignored
by the media.
Vijendra Singh, PhD of Utah State University has found it difficult to get funding for any studies related to autoimmunity and autism after he discovered and perfected tests that proved an MMR autism connection. Prior to that, funding was easily available to him including from NIH sources.
Famed researcher Andrew Wakefield, MD of London, England, the author of over a hundred scientific articles (and his organization, Visceral (http://www.visceral.org.uk) ) encountered worse persecution. His research was closed down and he was told that he had to leave the Royal Free Academy Hospital in London, England because he found evidence of measles in the gut of children with autism. His career came to a screeching halt in the UK. His phone was electronically bugged and his attackers are still after him, even now that he is in the US. Recently Dr. Wakefield has reported evidence of vaccine-strain measles virus genomic RNA in the cerebrospinal fluid of children with autism. This only accentuated his enemies’ attacks. Obviously all governmental funding had stopped years ago.
Arthur Krigsman, MD of Long Island, New York has replicated Dr. Wakefield’s research in the US. After doing some 250 ileal biopsies of children with autism at Lenox Hill Hospital, he was not allowed to have them further tested for viral genomic RNA. Dr Krigsman was then so restricted that he also had to leave his NY hospital base. The reason is obvious, he was replicating Dr. Wakefield’s clinical science and the powers that be weren’t happy with this. Congressman David Weldon (who is also an MD) asked that the NIH fund Dr. Krigsman’s research. To date, the NIH has not honored Congressman’s request.
Anybody looking at what happened to these researchers can see the obvious. Why do this to these men if people were not afraid of the research they were doing? It basically is a vaccine/autism Watergate cover-up perpetrated by the enemies of these excellent researchers. The sad part about this is that families and children will never be helped and more and more children will develop autism. Who will pay and care for these children when they turn into adults like Eric?
Especially when the parents get older and can no longer care for them. Will they have enough group homes and residential centers to care for the coming adult epidemic of autism? It is a subject that should be addressed now, but unfortunately only when something becomes a crisis is it addressed in the US.
Ray Gallup, parent and Co-founder
p style="text-align: left;">From Here to Delaware
by Julie Gallup (August, 2005)
When you’re growing up, there’s at least one person that will make a drastic impact on your life. My brother, Eric, is the one that stands out. In between watching Sesame Street together, going to the park, and doing puzzles, my love for him has grown. We’ve had our disagreements; but he was always there for me when no one else was. Everything about him wasn’t so flawless though. My brother has autism.
I didn’t know something was wrong with him until we started going out in public. Some people would stare at him like he was an animal gone wild in the zoo when he’d make a noise or run off by himself. I wouldn’t be telling the truth if I said I wasn’t embarrassed. It made me so angry that some people had no tolerance for my brother whatsoever.
Often I felt like the big sister even though he was older than me. It was difficult for him to do certain activities by himself. We helped my parents rake leaves even though most of them would fly off when he tried to put them in the bag. We all took turns reading to him when he wasn’t reading in his own way; flipping through his enormous collection of books, making sure he caught every page. However, when it came to stealing a piece of cake from on top of the refrigerator, he had mastered that.
Eric started getting really aggressive a few years ago. As soon as we saw he was getting agitated, we’d run into a room and lock the door behind us. I couldn’t get over the fact that I was actually afraid of my brother. I knew he was in pain and had no other way to show it. The police were at our house frequently. Eric was transferred from hospital to hospital but no place was right for him. I know it broke my parent’s hearts and mine too, but it was nearly impossible to give him 24-hour care.
We found a residential school in Delaware for Eric. Every other weekend, we take him out for lunch and ice cream (he’d eat all day if you let him). I look out across the water of the park we always stop at. I think about how I used to pray that God would somehow make him normal. Now, I think taking away his autism would take away some of his spirit too. I don’t want to lose that. Eric has given me so much: the patience to deal with others, the ability to love, and accepting people for the way they are. I wouldn’t be who I am today if it wasn’t for him. Deep down, I think he knows this. All I can hope for him is that he lives the best life he possibly can and not let anyone stand in his way. Maybe someday he’ll be able to come home.
My Brother Eric
While life can be filled with a multitude of temporary personal bonds, there are some connections that remain constant. The presence of a significant person in your life does not merely influence insignificant decisions, but permanently alters the way you perceive the world, and even the way you live. My brother, Eric, is one of those people. He was diagnosed with autism at age four, which affected his behavior and ability to communicate. Despite his own limitations, he has, in turn, impacted who I am.
Eric has a difficult time accomplishing relatively simplistic tasks, such as tying shoes or brushing teeth. Through repetition and guidance, I helped him begin to accomplish these challenges. Simultaneously, he taught me patience, understanding, and a different approach to situations that, at first glance, seem to have only one possible outcome.
Since he cannot vocally express himself, Eric uses a book filled with words, pictures, and letters. Once my brother mastered using this communication tool, he was able to clearly convey his needs to us, and, if the word was not located in the book, improvise. His sheer determination, intelligence, and willingness to learn were inspiring. Through this experience, I also realized how much we take language for granted, and often times use it negatively. From that moment on, I utilized my words constructively.
My brother's appearance does not indicate that he has a disability because he looks perfectly normal. Because of this, when our family would go out into a public place, we would be accompanied by stares, complaints, and laughter if Eric displayed inappropriate behavior. The lack of tolerance I observed throughout the years encouraged me to disregard differences and accept people for who they are.
When Eric became a teenager, he started exhibiting aggressive behavior. With his age came strength, so, unable to control his rage, my parents and I had to lock ourselves in our rooms until he calmed down. Through these episodes, I reminded myself that I still loved my brother and that he could not express the pain he felt any other way. His physical strength increased my mental strength, and, I am now able to deal with the problems that I face in a rational manner.
Although my brother no longer lives at home, the lessons that he has taught me over the years thrive within. Eric's struggles with autism have made me appreciate and focus in on my own abilities, rather than my weaknesses. He has also helped me prioritize the aspects of life that are truly important such as health and family, rather than the extravagant luxuries that are not nearly as vital. Even though Eric will never be able to live independently, I hope that when I am out on my own, I will impact others just as my brother did. I am stronger, more compassionate, and forever changed because of my experience with him.
The Wrongs of Disability
Disabled individuals have endured much discrimination from both society as well as the government on a daily basis. Although there have been some steps taken towards equality, it is still a struggle to obtain services that should be granted without question to those in need. Instead of compliance, there is suffering, protests, and lawsuits to gain rights. This, in addition to the public's torments and the difficulties each disabled person faces because of their disorder, creates an overbearing torrent of misery and responsibility, which often cannot be sorted out alone. Who, then, is to guide those who cannot guide themselves down the path of justice?
In 1990, Congress passed the Americans with Disabilities Act, which addresses the status and privileges that the disabled should have access to such as employment, services, and special accommodations. As stated, 'the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency.' (Section 12101, 8) To abide by this act, devices were placed in public facilities, including Braille signs, handicapped parking, hearing systems for the deaf, and wheelchair ramps, to serve the disabled. However, these are small measures compared to the major issues regarding the disabled that are still being contended with to this day.
Children with disabilities are permitted to attend school until they are twenty-one years of age under the Disabilities Education Act. Despite this monumental passage to achieving status in society, there are some limitations. Until recently, students had no authority to decide to participate in their 'traditional' graduation at eighteen. Alicia Vitello, a student with Down syndrome at Hanover Park High School, broke that barrier. Her parents, other supporters, and even the White House had to persuade the Board of Education to let Alicia walk in graduation with the classmates she had formed bonds with. 'It is more meaningful for the students to celebrate with their friends, than with strangers a few years later, said state officials.' (Bruno)
When the Act was established, there was no thought given to any emotional attachment or desires that a disabled student might have. Finally, the Board voted and the amended policy was approved. 'The district ... will now offer students with disabilities a choice to attend graduation in the fourth, fifth or sixth year of their high school career.' (Bruno) However, in order to be allowed at graduation, Alicia must complete her requirements for graduation, the requirements that she technically has three more years to conquer.
Places of worship are not even free of contempt. In Bertha, Minnesota, Carol Race brings her children to Mass. One of her sons, Adam, is autistic, and cannot control his behaviors. Other parishioners who do not know about autism urge Mrs. Race to quiet her son when he becomes disruptive. 'They attended Mass...and received a negative reaction from a person seated nearby who asked them to move. At another parish, the pastor chastised Carol Race after Mass for her son's behavior.' (Voth, 9)
The church, which is supposedly a serene and forgiving atmosphere, has become one of uneasiness. 'In..."Guidelines for Celebration of the Sacraments with Persons with Disabilities," the bishops wrote: "Catholics with disabilities have a right to participate...as fully functioning members of the local ecclesial community."' (Voth, 9) Although this is stated in an official document, most onlookers are unaware of the aforementioned statement, the disabilities that others have, and how much it hurts families that get criticized for actions that cannot be controlled.
The Americans With Disabilities Act states: 'It shall be considered discrimination...to fail to provide...paratransit and other special transportation services to individuals with disabilities, including individuals who use wheelchairs...' (Section 12143, A) This Act was dishonored when New Jersey Transit, under numerous accounts, failed to stop for three disabled individuals, and, in some cases, verbally abused them. Lawsuits were filed by: Paulette Eberle, who is blind, Tyrone Lockett, who has cerebral palsy, and Shonda Lewis, who has a spinal cord injury and uses a wheelchair. Although New Jersey Transit claims that it does not mistreat or discriminate against any of its passengers, Lockett, Eberle, and Citizen Action director Phyllis Salowe-Kaye, collected evidence of these incidents through photographs and recordings. '"I am appalled by...the blatant disregard for the laws prohibiting discrimination and the regulations requiring specific steps to provide transit access for persons with disabilities." Salowe-Kaye said.' (Hester)
The events that unfolded in this case are disturbing. A NJ Transit driver would not allow Eberle's guide dog on the bus. '"Drivers have...asked me to muzzle the dog. They asked me what am I going to do if the dog makes a mess on the bus...they are denying us our rightful place in society."' (Hester) In addition, when Eberle tried to get on the bus after this refusal, the driver closed the door and her hand got stuck. He then drove off, pulling her with him several feet. Lewis faced a similar ignorant response. When attempting to board a train in her wheelchair, neither the metal plate, which bridges the gap between the platform and the train, nor any employee assistance was provided. The conductor then told her to "stop playing games" because she was delaying the train. A bus driver denied Lockett access to the bus when he refused to lower the lift, and pulled away defiantly. Many commuters utilize New Jersey Transit's services, and, if this company continues to engage in derogatory actions against the disabled, it is not going to leave a positive impression among their customers.
Disability is agonizing to live with. However, the pains that can be prevented are the attitudes, words, and actions of society in response to these, and other examples of carelessness. Those who are disabled are still human beings and deserve enduring respect. Their needs are often forgotten, and instead, are masked by the stereotypes garnered by their disabilities. There must be more focus on their abilities, and more protest when their rights are not met wholeheartedly. If tolerance is exhibited, our society, as a whole, will benefit.
Americans With Disabilities Act of 1990. U.S. Dept. of Justice. Title 42, Chap. 126, Secs. 12101 - 12213. 1990.
Bruno, Laura. "Hanover Park Board Changes Graduation Rules for Disabled." Daily Record 12 Oct. 2006, 06 Dec. 2006
Hester, Tom. "NJ Transit Sued by Three Disabled Riders for Insensitivity." The Star Ledger 30 Nov. 2006, 06 Dec. 2006
Voth, Irene. "Parishioners with Autistic Children Seek Inclusive Worship Atmosphere." The Beacon 22 Apr. 2004, 10
PARSIPPANY - Eric Gallup
was a typical toddler. He played and laughed and was learning to talk. Like
nearly all other toddlers, he was vaccinated