Iowa Alumni Magazine | April 2005 | Features

From Our Readers

By Various Readers

NO TWO ARE ALIKE

As the father of an adult autistic son, Christopher, now 29, I truly enjoyed your article because it could, and should, be used to educate people with no knowledge or experience with autism about the disorder.

It took a psychiatrist from the Philippines to first diagnose Chris with autism when he was about three years of age. I was stationed in the Philippines from 1979 to 1981 with my wife, Helene, and our sons, Christopher and Stephen (who died in 1996). I didn’t even know what the word meant. When I found out, I was devastated.

To shorten the story, when Helene and I and our sons returned to the U.S., we found a complete lack of information and assistance about autism here in Texas. For most of his developing years, Chris was on ineffective medications and struggling through equally ineffective public school systems in Texas.

It was not until 1991 that Chris began getting the help he needs. Since that time, he has been in residence at the Autism Treatment Center in Dallas, where he resides in a decent group home with 5 other young men between the ages of 25 and 35, and where he goes to his sheltered workshop every day where he works on recycling projects. Every other weekend, for more than 14 years now, I bring Christopher home for the weekend so he can be “at home” and raid the refrigerator and soak in our backyard spa.

The one statement in your article that really jumped out at me, because it is so true, is that “no two children with an autism spectrum disorder are alike.”

Chris has moderate retardation with IQs in the mid-50s. Although he cannot read and has highly limited verbal skills, he can bathe and dress himself, fix simple snacks, and even help put up dishes and vacuum when he is at home. His behaviors used to be violent, but he is on a combination of medications that have stabilized him over the past five to seven years, the best of which for him has been Seroquel. (Just prior to entering residency at his treatment center, Chris had a complete emotional breakdown with dangerous self-abuse and spent a month in Dallas at Timberlawn Psychiatric Hospital, considered one of the best in Texas.)

It is amazing that those who saw Dustin Hoffman’s famous Rain Man movie believe all autistics are savants, whereas, in fact, that is an extremely rare condition. Many more are profoundly limited and can drag an entire family into an abyss of fatigue and despair.

I am pleased that my undergrad alma mater is entering the autism research field. For years, the University of North Carolina, Chapel Hill, has been perhaps the nation’s leading research center for autism. I know that, statistically, autism prevalence seems to be increasing, but I do not know whether the incidence of autism is increasing or whether better diagnosis is responsible for the increase in numbers.

Finally, in closing, the cover picture on April’s Iowa Alumni Magazine reflects one common characteristic of autistic individuals, which is the disorganization in the autistic brain to make appropriate spatial comparisons and inability to assimilate external information into a proper frame of reference.

Thanks for your article. I will log on when I have more time to the RASP website to see what new information I might come across.

Paul S. Kendall, 66BA
Arlington, Texas

COPING WITH THE SEVERELY AUTISTIC

Thank you for your attention to autism in your article. I work as an aide in an intermediate school in a classroom where we have three severely autistic students. Consequently, I am interested in any and everything that can be done to publicize this handicap in order to improve the lives for both the families and the victims of autism.

I am writing because I have one criticism of your article which I wanted to present to you if it might improve future articles or presentations to the public in the way of educating them about autism. Because I work so closely with autistic children, I am familiar with how devastating it is in its most profound cases. However, in your article, and in other articles I have read about autism, I do not get a sense of the seriousness of this handicap. To the reader who is not at all familiar with autism, the afflictions of dislike of loud noises, aversion to human touch, fixation on objects, a tendency toward becoming easily agitated and clumsy, delay in communication, odd, repetitive behaviors, the inability to forge social ties, food allergies and gastrointestinal problems, do not sound like necessarily debilitating problems. To mention at all the “savant” aspects of autism in fact adds to a concept of an almost fascinating mystique of this illness. In brief, I do not feel that the day-to-day crises that severe autism presents to an otherwise normal family is represented in your article.

We have a ten-year-old, 190-pound boy who needs his diapers changed, and who often simply wets where he is sitting or standing because his diaper can’t hold the load. All three of our autistic children are pretty much nonverbal. They are inclined to violence when they are agitated and, in fact, some of their tantrums are self-abusive and destructive to anything within their grasp. Constipation creates its own set of traumas for the family, as does their feeding habits. They are messy and clumsy at the table. When they do verbalize, their words are repetitive and unintelligible, or they simply make loud, groaning, grunting kinds of noises. I could go on and on, but I think you get the picture. Their behavior in public is bizarre and uncontrollable in many of its aspects. Autism can create hideous scenarios for the children who have it and for the families who must grope with how to care for them. This, of course, extends far beyond their childhood years.

I just would like to see a more descriptive and all-encompassing definition of autism when it is presented to the public. It is only through the public’s full and total awareness that lives can be improved for the families who must deal with it.

Jane Sibert Duchene, 75BA
Orange, Texas

CONFRONTING SOCIAL ASPECTS OF THE SYNDROME

I just finished reading “A Different World” in my issue of Iowa Alumni Magazine. It’s interesting and encouraging to see more and more research being done in this area.

I’m convinced that my daughter, who is nearly 20 now, has Asperger Syndrome. As a young child, she was diagnosed with “anxiety disorder,” depression, and ADD. I’m sure if she were to be “re-diagnosed” at this point, it would be Asperger. We have, in fact, been encouraged to go through testing and diagnosis again, so to “take advantage” of the held, financial and otherwise, that is available to people with this disorder. She, and we, have definitely shied away from that. She is quite determined and feels she would be taking help from someone who truly needed it (Yay! A thought that isn’t self-centered!).

It was such a struggle for our daughter during those childhood years, as well as for us parents, feeling like it was somehow our fault. I appreciate your bring those points out and for reassuring your readers that the autism spectrum is indeed a biological disease.

My daughter still struggles, as do I, with her lack of social skills and her lack of understanding as to why said social skills are important. With the advent of more research and recognition, what’s been really neat is that she and I have been able to discuss the disorder. She is well aware of all of the symptoms, hallmarks of diagnoses, etc. She has discussed her medications with her doctor, helping to find the ones that will affect her serotonin and dopamine levels. In high school, she even did a research paper on this topic for a school project.

As a mom, I’ve been able to talk with her about both acceptable and unacceptable behaviors. Instead of just telling her that she’s acting rudely and that people are hurt by her apparent lack of concern, we can approach it like this: I understand that you don’t understand why this is important, but here’s why, and this is why, etc., and we end up having much more fruitful discussions.

I think that it is more difficult for people who are higher functioning and their families to appear normal, because society doesn’t understand that they are not purposefully being rude or antisocial.

Every day, I thank God that my daughter has been able to lead a relatively stable life and that she will be a productive and giving member of society. She struggles in college as far as the social life goes, but because of stories like yours that are bringing autism to the public’s notice, she and they can become more aware of her differences and work from that perspective.

In fact, she called me the other day after having declared her major in education and planning on becoming a history teacher. She said, “I’m changing my major to Public History! I’m not going to be a teacher. I feel so excited about this, and I don’t know why I thought I wanted to teach. I’d have to be around people all the time. I don’t even like people!”

Thank you for your insightful article. I’m sharing it with several people.

Peggy Jones Weaver, 81BS
Wayland, Michigan

BIOMEDICAL INTERVENTION FOR AUTISM

Your article gives a great perspective on autism from the standpoint of the University of Iowa medical staff and some parents with older children. Unfortunately, none of them are very current on today’s treatments and theories of cause and cure.

You mentioned that the U.S. Congress had met on the subject of vaccines and mercury. Dr. Buttar testified before Congress, as did his formerly autistic five-year-old son. In a study, Dr. Buttar treated 41 patients for mercury and heavy metal toxicity and cured 19 of them. The rest showed vast improvements mentally and physically.

We are currently on this program of chelating and are about three months into the process and have seen incredible results. Our son’s eye contact has improved, he is communicating with a picture exchange program, he’s started babbling and being much more vocal, and he’s just about lost his temper. Before doing chelation, we did blood tests, hair analysis, stool specimens, and checked his liver and kidney functions. We found that his MMR titers were ten times the normal level, which would indicate a severe reaction to his vaccination at 14 months. He had three words before that shot and at 18 months had none.

After starting chelation, we checked his liver and kidney functions again and his white blood cell count had dropped in half and his liver and kidneys were working overtime. This is not due to the chelating drugs, most of which are all natural and only replace what his body should already have, but due to the toxins that were being pulled loose and filtered out of his system. In other words, the chelation was working too well. It was pulling out a bunch of toxins.

The interesting part for me is that I contacted every person you mentioned in your article about having our son’s treatment program documented so that if it did indeed work as Dr. Buttar says it does, we would have a case study for other Iowa children to follow. Nobody was interested in documenting this “risky” procedure. I was referred around the entire research area and hospital to no avail. These people didn’t seem very interested in helping in our situation and were only concerned with their current studies on DNA theories and early detection, not a cure.

If you look at the rate of autism increase, it cannot be explained by better detection. If that were the case, then all diseases and developmental disorders would show an increase as we would be able to better detect all of them, not just autism.

Your article says that boys are affected by autism four times more often than girls. It’s interesting that testosterone amplifies the effects of mercury in the body.

You should also check on the number of mandatory vaccinations now as opposed to the number required in the 1970s. It is almost a direct correlation to the increase in autism.

No one can seem to prove that mercury in the vaccinations has any link, yet in 1999 (three years before my son was even born), the Centers for Disease Control recommended that there was no safe level of mercury and urged the pharmaceutical companies to remove it entirely from our vaccine supply. In 1995, Iowa and California lawmakers mandated mercury-free vaccines.

The link between mercury/vaccines and autism will never be proven as long as government-funded agencies are conducting the studies to indict themselves for exposing our children to these toxins through their mandatory vaccinations schedule. It will never be proven as long as the drug companies are making billions of dollars supplying these vaccines to the government and their studies show no link as well. Isn’t that interesting?

Please check out these websites: www.momsagainstmercury.com and www.dan.com. Also, do some reading on Dr. Buttar’s research and read his testimony before Congress last year.

I was very disappointed with the University of Iowa’s lack of interest in our son’s procedure. We are keeping our own records, but I think they missed out on a great opportunity to help other children in the future. Your article accentuated the beliefs against the biomedical approach as it is hardly mentioned and usually referred to and commented on by people who know little or nothing about the procedure. I would be interested in sharing some insight and even showing you our son’s records and medical reviews so that you can write another article on a little-known treatment that is showing tremendous results.

The most agonizing part of this is that we try to educate the public with these extremely generic articles, while we parents are still footing the bill entirely for our children’s treatment as the insurance companies will not cover these “controversial” procedures. With the current rise in autism, I think everybody needs a much better education on the subject and not another generic article about how we don’t know what causes it, how we are looking for a cure, and how some parents are searching for the “magic bullet.” There is a ton of medical information about autism and autistic-like disorders and how environmental factors and toxins can duplicate the same symptoms. The general public needs to be made aware of the “real” facts and let them connect the dots.

But that will only come from proactive parents like myself. We as parents can no longer rely on the government, the pharmaceutical companies, or the insurance companies as all their ties are to money.

Parents just want their kids to get better and prevent any other children from being lost to autism.

Chad Ohly, 94BBA
Lone Tree, IA

THANK YOU

I just finished reading “A Different World,” which had been forwarded to me. Thank you for helping more people become aware of autism spectrum disorders and focusing on those individuals with “milder” forms of this disorder. I put the word “milder” in quotation marks, because, as a mother of an 18-year-old young man on the very bright end of the autism spectrum, I feel that his disability has had a profound effect upon him and our family.

My son is about to graduate from high school. Our experiences with the Iowa City School District have been good overall, but more education of the educators is needed. I am entering this new phase of my son’s life with more than a little trepidation. Fortunately, our family has been fortunate in establishing links with many supportive professionals in our community.

Individuals with autism spectrum disorders work very hard to fit into this world. The more “typical” people who become aware of the gifts and struggles facing people on the spectrum, the better. Thanks again for the article.

Eileen C. Fisher, 84R, 98F
Coralville, Iowa