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Expert Roundtable

We asked viewers to send in their questions the week Refrigerator Mothers first aired in July of 2002. Experts answered a selection of viewer questions about the causes and symptoms of autism, and shared tips for families with autistic loved ones.

Participants

Dr. Bernard Rimland, Ph.D., Founder of the Autism Society of America, pioneering research psychologist in the field of autism diagnosis and treatment and parent

Clara Claiborne Park, Parent and author of "The Siege: A Family's Journey into the World of an Autistic Child" and "Exiting Nirvana: A Daughter's Life with Autism"

Dr. Marrea Winnega, Ph.D, Director of the University of Chicago Developmental Disorders Clinic and clinical psychologist with specialties in autism spectrum disorders

Viewer Question: My son was diagnosed this year with PDD (Pervasive Developmental Disorder) and the news was a huge blow to our family. As I think back on his infancy I feel like I did not hold him or cuddle him enough. Primarily because I had postpartum depression which went untreated. I was so unhappy and distracted that his passive and quiet nature made it easy to ignore him and allow him to isolate himself. I have a baby daughter now and I shower her with hugs and kisses. Is it possible my depression and lack of affection those first few months of his life (approximately 6 months) affected his diagnosis?

Dr. Winnega: Postpartum depression has not been shown to be a cause of autism. However, autism does run in families in which someone has a clinical depression or Bipolar disorder (manic-depression). It is unlikely that your response caused your son's autism. Unfortunately, many parents intrude on their children at this young age with no effect on their outcome.

Viewer Question: Dear Ms. Park, I am the mother of an eight-year-old son diagnosed as High Functioning Autistic. First of all I want to tell you how much I enjoyed both of your books. I couldn't lay them down.

I was wondering how you were able to gain such insight into your daughter's way of thinking. I have tried to look at my son's particular ways of thinking and some of it is very difficult for me to understand. At times I think I may be over analyzing it. He is now very verbal but he cannot explain to me why he wants things a certain way or why certain things bother him. I wish you could publish some tips other parents could use to gain insight into their Autistic children's "puzzling behavior". My son will also start giggling or smiling out of the blue and if I look at him he'll tell me "Don't ask me". There are certain cartoon characters and television shows he loves but he won't look directly at a picture of them in a book (he'll only look out of the corner of his eye). One time he told me he couldn't look because they would see him.

Have you ever considered having a website? I'm sure there are a lot of other mothers out here who could benefit from your straightforward insight into how our children's minds work. I look forward to your reply.


Clara Claiborne Park: I'm not sure I gained insight — unless insight means sympathy and respect rather than understanding. Maybe you will have to settle for that, for analysis of so foreign — I might say extraterrestial — way of thought doesn't do much good. THEY REALLY DON'T THINK LIKE US. Nor do they easily find the words to say what they do think, even when, like your son, they are far more verbal than my daughter was at the same age — 8. She didn't begin to be able to answer a Why question — why she wanted things a certain way or why certain things bothered her — until she was 13 or 14, and even then she only elaborated on them, she couldn't really say why — as to that we were no wiser. "The Siege"and "Exiting Nirvana" are full of examples of exactly that. Why did she correlate pieces of bacon or flavor-tubes or dominoes or clouds, etc. etc. etc. with bad or fairly good or very good days? She could, if I was resourceful and tactful and didn't press her too hard, give me more details — as your son did when he said he couldn't look directly at his cartoon characters because they could see him. Why? Who knows? He sounds so like Jessy — only now she shouts — "snaps" "WHY DID YOU ASK ME THAT!" He sounds so like Jessy — the giggling, the smiling. (I once heard at a conference a 17-year-old boy telling about something he really liked to think about: it was a "milk machine" and it went round and round (they love things that go round) and made milk. He smiled and giggled so happily.) And his answer about not looking at the characters reminds me of Jessy not looking in people's eyes because she would see "the hangman," — not to mention that he would jump higher or lower depending on how late the "politeness" she hated to hear was. She drew it all out, and was glad to talk about her drawings, but that didn't make us understand it any better. We understood HER better, maybe; we realized it was very, very important to her but that's not the same as understanding why.

So I haven't any tips, except on routines, wanting things a certain way, even what bothers him: accomodate him if you can without inconvenience, but DO WHAT YOU HAVE TO DO. It's no favor to him (or the family, or the school) to imprison yourselves in his routines. If he shrieks, as he probably will, it won't hurt him (though it will hurt you). He'll stop eventually. Tip, though: tell him ahead of time that there will be a break in routine or that he'll have to put up with something that bothers him. Sometimes you may want to do this deliberately, just for "flexibility practice." Maybe eventually you'll hear him say proudly, as Jessy now does, "I was FLEXIBLE!"

Another tip: join your state or city chapter of the Autism Society of America. Best supports are other parents and those with experience of autism. And they have wonderful regional and national conferences.

Web site — please! I'm almost 79. Enough already! Good luck. (For more information about Jessy Park, visit her website)

Viewer Question: I was watching the special tonight and I was wondering why some autistic people bang their heads on tables, walls etc.

Clara Claiborne Park: This is for a professional to answer; I can only repeat what I have heard from professionals at conferences on autism: Some/many autistic people have lowered sensitivity to pain. All autists derive satisfaction from rhythmic self-stimulation, rocking, etc. If they aren't bothered by the pain, banging the head, even to the point of injury, is just a form of this.

Dr. Winnega: Head banging is not necessarily a sign of autism. People with mental impairments/retardation and not autism also bang their heads. Some very "normal" children bang their heads. In people with disabilities, we really do not know why they do it and it is one of the most difficult behaviors to eliminate. One theory is that they have a chemical imbalance, specifically with endorphins. Endorphins are endogenous opiates, that is, our bodies manufacture something like opiates that help us cope with pain. The theories are that people head bang because they cannot feel the pain or because they feel really great after the endorphins kick in. Another theory is that they have earwax build up and decrease head banging when the earwax is removed — however, it does not necessarily go away. Another theory is that they are having headaches. For one child who recently increased his head banging, it was an indication of his asthma flaring up. Head banging is rather complicated and may be related to the larger issue that is found in "typical" people — self-mutilation.

Viewer Question: I have a four-year-old autistic impaired child who says maybe one word a day, only I and a few others can understand the word at the time. I have read various statistics about children who are autistic impaired learning to speak. I wonder if my daughter will ever really speak. I have read research showing children continue to learn speach abilities as they grow, and I have read research stating that half of all autistic impaired children never talk. What are your opinions?

Dr. Rimland: In the past, autistic children who did not speak had a very bleak outlook. However, in the past decade or so, a number of non-drug biomedical interventions have been used, including high doses of certain vitamins, which have brought about major improvements in speech and a number of other areas in autistic children. In particular, quite a number of autistic children have begun to speak when given high doses of vitamin B6 and the mineral magnesium, as well as another nutritional supplement, dimethylglycine (DMG). For more information you may contact the Autism Research Institute (A.R.I., 4182 Adams Ave., San Diego, CA 92116, fax 619-563- 6849, www.autismresearchinstitute.com).

Viewer Question: Hello! I've seen autism children run when they are scared when there is really nothing to be scared about. I was wondering why the children with autism with an exception to one I've seen are usually somewhat paranoid (if that is the proper term for that)? One more thing I was wondering, is autism a genetic disease?

Dr. Winnega: Regarding running when they are scared: it is not paranoia. Sometimes, they perceive things in ways we do not. I do not mean extrasensory perception, but they visually focus on the details, which we do not attend to and/or take for granted. These things could be making them run. Are you sure they are scared? They could also be running because they do not understand what is being said to them or do not know what they should be doing. On the other hand, wouldn't you be afraid if you did not understand what someone wanted you to do? Re: Is autism a genetic disease? Yes, everyone is making this assumption about autism as well as many other disorders. The belief is that as many as 20 genes may be responsible for causing autism. Several centers in the United States are linked with international centers to work on this. Many top genetic scientists are involved in this research.

Viewer Question: As a parent, was there a single most thing that kept you going, other than the love of your "special child"? Thanks.

Clara Claiborne Park: What kept me going? I can't cite a SINGLE thing. I was lucky in many ways — I had a supportive family, and the autistic one was the youngest of my children, who were already in school when we realized something was wrong with her and didn't need me as much. So when we realized, I could spend a lot of time with her trying everything I could think of to stimulate her and do things with her. Progress was very slow, of course, but there was always a little bit to keep me going. You learn to be joyful over small things, and to try and try and try again; if something doesn't work this month, or this year, she may be ready later. I wrote THE SIEGE about these years, and it gives many examples.

Viewer Question: After an eternal five-month wait, the date for our appointment with a developmental pediatrician came around. Despite having "high-functioning autism" suggested by several of the faculty at our school that offers Early Intervention, and a referral by our regular pediatrician, this physician spent less than 15 minutes with my son... 20 minutes were spent on developmental testing by a staff member.

The physician assured me that "if a child engages in reciprocal play, then he is not autistic." A pat on the back and a chunk out of the savings account and I was sent on my way.

I don't even want to go into the list of autistic behaviors that my son shows....at this point, all I want to ask is if the physician was correct in his statement?

Determined to find *help* (and I thank you for your time)


Dr. Winnega: A person needs 6 out of a possible 12 characteristics in order to have autism (Autistic Disorder - not PDDNOS, Asperger's, etc.). The presence of one particular characteristic does not mean a person has autism. The absence of one particular characteristic does not mean a person does not have autism. The physician was inaccurate in his statement. Some children with autism can engage in reciprocal play, but show a lot of other characteristics, as you describe your son. However, children under the age of 3 are a bit difficult to diagnose because they are rather unusual. This may be why this developmental pediatrician jumped on the reciprocal play - probably wanted to be positive.

You need someone to perform, at least, an ADOS (Autism Diagnostic Observation Schedule) and an ADI (Autism Diagnostic Interview). If it's possible, email again letting us know where you live and we may be able to link you with someone (psychologist or psychiatrist) trained in these instruments.

Viewer Question: My Sister and I are functioning as our 48-year old "classic" Autistic Brother's Caregivers, and I am in the process of becoming his Legal Guardian. For many years, my Brother had a full and good life in first the Children and then the Adult villages of the Camphill Movement, becoming a master weaver. Unfortunately, six years ago, our Father died unexpectedly. This came at a time when my Brother was experiencing many other unavoidable changes. All this lead to a breakdown, and he is now in a neuro-psych facility receiving neuro-behavioral and psycho-pharmacological treatments. It is our hope that he will be stabilized, and will be able to return to a setting similar to the Camphill Village.

I would be most interested to know any recommendations on facilities, therapies or treatment programs for older autistics as they seem to be virtually non-existent.


Dr. Rimland: There is no question about it: there is an extreme shortage of suitable residential facilities for adult autistic individuals. Pie-in-the-sky do-gooders who were very well intentioned, but very poorly informed, did a great disservice to mentally handicapped individuals of all kinds, including autistic, retarded and schizophrenic individuals by closing down most the institutions (the "asylums" - think what the word asylum really means) during the last several decades. They thought they would improve things by moving the handicapped persons into group homes in the so-called "community." As a result, premature deaths and patient abuse have skyrocketed.

In my view, the very best choice for your brother is a place like Camphill, or one of the very few excellent, moderately self-sufficient farm or ranch communities, such as Bittersweet Farms in Ohio.

The Autism Research Institute in San Diego maintains a list of school and residential facilities for autistic individuals (A.R.I., 4182 Adams Ave., San Diego, CA 92116, fax 619-563- 6849, www.autismresearchinstitute.com).

Viewer Question: I was wondering if you could each add your thoughts on the current controversy over the belief that a mercury-based preservative (thimerosal), found in many children's vaccines, is responsible for the rapid increase in autism diagnoses nationally. There seems to be a lot of inconclusive evidence on either side of the debate. I would truly love to hear your own perspectives on the issue.

Dr. Winnega: The problem is that the correct studies have not been done — that is, those comparing children with autism to "neurotypical" children of the same age group. However, epidemiological studies such as those by Frombonne from Canada are showing an increase in autism parallels a decrease in the diagnosis of mental retardation.

Dr. Rimland: In my view, there is very little doubt but that thimerosal, the mercury-containing preservative used in many vaccines, is a major contributing factor to the present alarming increase in the prevalence of autism. As early as the mid-1960s I was hearing from the parents of autistic children that the child had reacted badly to vaccines, and at that time only 3 vaccines were being given. Currently, a fully vaccinated child receives approximately 20 vaccines before the age of 2! The increase in autism closely parallels the increase in the number of vaccines, and therefore in the amount of mercury the child has received. However, mercury is not the only culprit. The vaccines also contain live viruses, and various chemicals and other substances, such as formaldehyde and aluminum. Not good!

Viewer Question: While I was very glad to see the POV, "Refrigerator Mothers," I and a medical doctor I watched the program with, were dissapointed that there was no update on current knowledge of cause. Please advise.

Dr. Winnega: Autism as well as many other disorders is believed to have a genetic cause. The belief is that as many as 20 genes may be responsible for causing autism. Several centers in the United States are linked with international centers to work on this. Many top genetic scientists are involved in this research. Autopsy studies done on the brains of children and adults with autism show a brain that has too many brain cells that are not differentiated, an inefficient brain — the cause of this is suspected to be genetic.

Dr. Rimland: The Autism Research Institute has been studying causes and treatments for autism since 1967. We have learned more about cause and treatment during the past half dozen years that in the past 3 decades. In a nutshell, autism seems to be caused by an environmental trigger, such as mercury, live viruses and other constituents of vaccines, which impinge in a very detrimental way upon genetically susceptible individuals, 1 in 4 of whom are males.

Viewer Question: What are the biggest changes you have seen in the treatment and understanding (both public and professional) of autistic people and their families in the years since you first received a diagnosis?

Clara Claiborne Park: My daughter was diagnosed early in the 1960s, at a time when there was no useful treatment available and the only understanding was psychoanalytic and wrong. Everything has changed — though slowly — since then. Once the actuality of a biologically based condition was recognized, the way was open to educational interventions. Lovaas, Ogden Lindsley, Frank Hewett pioneered the powerful behavioral techniques which have been refined in the past 35 years; Eric Schopler founded Division TEACCH at the University of North Carolina Medical school and lifted the onus of blame from parents, telling the profession they could be "co-therapists" and training them in ways to teach their children. Schools, over time, refined their special education methods as more was learned about the needs of autistic children. As they aged out of school programs at 22, job coaches were recognized as necessary for many. The key word for the last 35 years is EDUCATION. There is just no comparison between what was and what is known and practiced.

Viewer Question: Our son has Asperger's Syndrome, which is quite mild compared to many others Aspies we know or have read about. He is extremely high functioning and profoundly gifted in math; it's social skills that challenge him. In talking with parents of other kids with ASD (Autism Spectrum Disorders), I am really startled by the high percentage of them who were born after a prolonged or difficult labor and initially had medium to low APGAR scores. Our son spent 4 hours in the NIC after a 48+ hour plus of hard labor. Also, through anecdotal information, it seems many children with ADHD also had lengthy or difficult births. On the other hand, both my husband and I have certain characteristics that can be associated with autism, though neither of us are autistic (for example: I am highly sensitive to sensory stimuli; think very visually; my husband doesn't pick up on many social cues; thinks out of the box). My thought is that we may be genetically predisposed for autism, and in certain environmental situations, including difficult birth or early illness, our family is susceptible to autism somewhere on the spectrum. Our son showed no signs of autism for his first 3 years--he was a social butterfly, very engaged compared to peers, etc. While his cognitive capabilities startled us at a very early age, it wasn't until he started preschool at 3 years that we began to see some of the social skills differences during his interactions with peers.

Anyway, my basic question is, what research has been done about the possibility of a difficult birth resulting in manifestations of autism?

Thanks.


Dr. Rimland: Yes, there has been some research examining the possibility that Aspergers syndrome may be associated with a difficult birth. However, the relationship is not considered strong. In the third edition of "The Biology of the Austistic Syndromes" by Christopher Gillberg and Mary Coleman, several studies are cited which suggest that severe perinatal problems may be over-represented in the population of Asperger cases.





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