Tuesday, Feb. 27, 11 a.m. ET
'Unstrange Minds: Remapping the World of Autism'
Tuesday, February 27, 2007; 11:00 AM
Author Roy Richard Grinker took questions about his book "Unstrange Minds," which is both an overview of the history of autism, and an account of how his family has coped with his daughter Isabel's autism diagnosis.
Grinker was online Tuesday, Feb. 27 at 11 a.m.
A transcript follows.
Grinker is Professor of Anthropology, the Human Sciences, and International Affairs at The George Washington University, where he offers classes on psychological anthropology, ethnicity, nationalism, and anthropological theory. He recently received a $120,000 grant from the National Alliance for Autism Research/Autism Speaks to conduct the first ever epidemiological study of autism in Korea.
Allentown, N.J.: Hello,
I have three questions. Can you please provide a simple definition of autism? In the past, were there different terms for what is known as autism today? Can children grow out of autism with treatment or is it a permanent condition?
Roy Richard Grinker: Autism isn't all that easy to define because the term now represents such a wide range of symptoms and severity of symptoms. But the basic definition I use as a parent is this: autism is a spectrum of disorders characterized by deficits in communication, often with a significant language delay, and deficits in the ability to engage in reciprocal social interaction. There is often the presence of stereotyped behaviors (for example, flapping the hands) and restricted activities. Mental retardation occurs in autism as well. The onset is before three years of age but people are often diagnosed much later. I have a student who has Asperger's disorder (one of the autism spectrum disorders) and he was diagnosed when he was 16.
Washington, D.C.: Being the epidemiological numbers are far, far from being complete...it is amazing that you can say there is no real increase in autism...where are all these adults now?
Amazing how someone like you has all the answers while the facts still need to be uncovered.
Roy Richard Grinker: The adults are out there, but adults are almost impossible to count. They are in group homes, institutions, living and working among us, wearing other labels. Counting adults with autism today is like counting adults with speech and language disorders and other disorders that are much easier to count in children. In addition, we do not have valid and reliable instruments for diagnosing autism in adults. Suppose an autistic adult who was somewhat functional in society went to a doctor for anxiety, that doctor would not likely diagnose the patient with autism, especially if a. he didn't have good childhood baseline data, and b. if he could treat the symptoms. Autism is still diagnosed in childhood.
Washington, D.C.: Autism has clearly become a trendy diagnosis in America, but I am concerned about the global awareness of autism, particularly in developing countries. I am about the leave for a Peace Corps assignment in Kenya and will be working with children. How significant is autism awareness in, say, African countries?
Roy Richard Grinker: Wow, great question. Autism awareness is so much better! My research in Congo, South Africa, India, and South Korea shows this -- and I write about these places in my book. There are some pretty bad stories, of course, as you might imagine. But compared to the way they were...much better today.
Bethesda, Md.: Hi Dr. Grinker. My daughter goes to school with your daughter and my son, who has high functioning autism, is currently in middle school. Our experience with the middle school has been excellent, however we are very concerned about high school. As you know, our high school is very large, competitive, and the schedule is very hectic. How has Isabel coped with the transition from middle school to high school and how is she adapting to the stress and the pace? How are the services -- I know that the class sizes are very large and there are many students per counselor?
Roy Richard Grinker: High school is tough! And it's tough for all children. But fortunately we live in a different world than when I grew up. I grew up during the 1960s in Chicago and even if a child had a math tutor for some extra help it was hush hush. We're so much more accepting of difference these days. And research has shown that when children understand a classmate's disability they are much more accepting and open than when they don't. Sometimes the adults our kids interact with can be more of a problem than the kids!
Baltimore: Hi Dr. Grinker,
Why do you think certain segments of the autism advocacy community are angry about your finding that autism is not a new thing? Have you been surprised at their vitriol?
Can't wait to read your book. Thanks.
Roy Richard Grinker: I've gotten so many positive responses to my work! But you are not asking about that. The negative mail can be divided into two types. 1. People who want to believe there is an epidemic. But I see nothing mutually exclusive about arguing for better and more services for people with autism and at the same time arguing that autism is something we are just beginning to figure out and count correctly. 2. People who are afraid that vaccines are related to autism. But there is virtually no scientific evidence linking vaccines or anything contained in vaccines to autism or the changes in autism prevalence. These two issues are, of course, related to each other. The vaccine fears emerged in part from people trying to figure out why the prevalence rates have increased so much. But I don't think the incidence of autism has increased.
Columbia, Md.: Congratulations on your daughter's success and many hopes for your well beings. As a father, have you ever felt that you some how failed? For the benefit of those who have not yet achieved beyond our wildest imagination, could you please discuss how you overcame some of the dark moments of uncertainty in the beginning? What advice do you have to help parents cope with the feelings of inadequacy that often come with a special needs (or typical) child?
Roy Richard Grinker: I think it's expected to question yourself. My wife and I have questioned ourselves since our daughter was diagnosed. In the past, doctors were only too happy to blame the parents, saying that autism was the result of a parents' inability to attach properly to the child. But like all parenting, it's trial and error. My best wishes to you. I struggle every day trying to figure out if I'm doing the best for Isabel.
Falls Church, Va.: Why are we seeing so many more diagnoses of autism these days? Is it knowledge of the symptoms? Is it a growing problem related to a nature or nurture issue? Thanks for doing this chat!
Roy Richard Grinker: My book covers these issues. No one thing alone could have raised these rates. But together many things could. One of the most important factors is epidemiology. In the past, epidemiologists looked at school and clinic records, and when autism was not a common diagnosis, the studies came up with low rates. I am doing a study in Korea, where the term autism is used rarely. If we used records, we'd get a low, low rate, a few in 10,000. So we have trained child psychiatrists doing the screenings and diagnoses and we're finding lots of cases.
Falls Church, Va.: Dear Sir,
I read your article this morning and had two reactions....tears and relief. My husband and I have three children; Joshua, 6, Lily, 4, and Silas, 1. While looking for answers for our daughter Lily and finding out she has PDD, we also discovered that Joshua has Asperger's. Like you in your article, the diagnoses came as relief and freedom more than a shock.
Joshua is in a mainstream kindergarten class and is doing exceptionally well. He is honestly quite intelligent and shows skills well beyond his age in math, reading, writing and music (he picks up a song at each piano practice to his teacher's amazement). Our daughter qualified and was immediately placed in a Non-Cat special education pre-school and is also showing tremendous signs of improvement. With that being the case, I still cannot help but come to tears every time I especially think about my little girl. I have questions like, "will she have girlfriends in school, will she ever date and have someone court her for marriage, will she and I have a deep relationship as mother and daughter, do we need to set a trust fund up for her now in the event that she needs assistance with taking care of herself in the future.....".
When I read your article, all I could think was FINALLY, I can ask someone about the future, if you will. Sir, would you please share some thoughts, if you can, about some of my concerns for my sweet Lily. I recognize that you do not have a crystal ball and that you can make NO guarantees....I just would love to hear about Isabel and how she is doing relationally in this world.
Much appreciated and grateful.
Roy Richard Grinker: It's really important to remember how much progress can be made. When I talk to autistic adults, I realize that the progress continues on into adulthood. It's not like growth and maturation stops at age 20, 30, or 40, despite the decrease in plasticity of the brain after the first few years of childhood. There is so much reason for hope, especially since we live in a society that is embracing people with differences in a way we never did before.
Columbia, Md.: As a physician and mother of a child with Asperger's, I feel I've seen both sides of this phenomena. I noted in your article the attempts of some parents to link ASD to mercury (or for that matter MMR) and the idea of "contamination." I would say that the feeling is more like "but for x, my child would be perfect." Do you feel this is a unique American (Western) construct or do you find this in other cultures.
Roy Richard Grinker: I think you are referring to the other article which noted the idea of "contamination," not my article. But it's still a relevant question for me. I think we all have fantasies of what our child will be like -- and those fantasies start before pregnancy! Every culture has its idea of what is perfect, and I guess I see parenthood as a constantly evolving fantasy of what our children will be like. Anyway, yes, I think this construction of an ideal is universal.
Atlanta: Regarding vaccines, where are the scientific studies that show definitively that vaccines with thimerosal (mercury preservative) are not a factor in autism?
Roy Richard Grinker: Hard to prove a negative. Could we prove that television, for example, is not related to autism? But there is an increase, a steady increase, in autism diagnoses in the birth cohorts in Canada born during the ten plus years since thimerosal was removed.
Washington, D.C.: I have a 9-year-old daughter who was diagnosed with Asperger's Syndrome several years ago. As she gets older, she recognizes her differences from the other kids, but really hasn't come out and asked any pointed questions about it.
Can you provides some words of wisdom about trying to explain this to your child?
Roy Richard Grinker: Take it slowly! Use your best judgment. We started talking to our daughter about autism when she was 12. She doesn't really seem to pay much attention to the concept!
New York, N.Y.: As a father a child with autism, it pains me, and many other parents we know, to see why we do not get over with the question of whether it is the higher rate or better diagnostic awareness or both. And if we must have an absolute answer about it, why do not we take a survey of pediatricians who are in the field over 20 to 30 years?
Would these children be better served with focusing on the treatment(s) and standards? A large amount of resources are needed to treat a child with autism from the system and the parents, yet virtually there are no standards and no governmental inspection exists to ensure that minimum standards (e.g. coordination of treatment, communication between providers, planning and supervision). We consider fraud and abuse of tax payers dollars when Medicaid funds are used and the providers do not comply with many more stringent governmental service standards.
And what about the lack of coverage by insurance companies? Would not we consider it outrageous if treatment was denied to stoke, cancer or immune deficiency victims?
A concerned parent and tax payer.
Roy Richard Grinker: I agree with you!
Washington, D.C.: Wonderful article. I wonder, however, if there are any instances when a child who may have Asperger's isn't better off if he/she is not labeled at all. Especially if the child is already mainstreamed, is doing well academically and emotionally and is happy. How does the labeling add to the quality of the life? For that matter, what are the "therapies" for children and adults with Asperger's?
Roy Richard Grinker: That's an excellent question. There's no "one size fits all" approach. I met a man last week while doing a lecture in Tennessee who is in his 40s. Only at this age did he discover the term Asperger's and it really helped him to make sense of himself. But the reality is that the label can work if it gets you services or even points you in the direction of services. In the past, for example, kids with Asperger's disorder didn't get speech therapy very often because they had no language delay and had good articulation. But speech therapy helps so much with the core social deficits that these kids are now getting speech services and are really benefiting -- they are learning how to communicate socially.
Reston, Va.: As an adult with Asperger's, why do you think more research is not being conducted on adults who are diagnosed with an autism spectrum disorder? You would think that by studying adults, researchers could learn how to better treat children. People keep asking where all the adults are, but I think a lot of people don't realize that a lot of the adults are diagnosed when their kids are diagnosed. They just learned to adapt...most suffering a lot of emotional pain in the process.
Roy Richard Grinker: Totally agree with you. Biggest mistake I made during Isabel's childhood was not listening to autistic adults. There are some amazing blogs out there about autism that discuss adult issues often.
New York: The Wall Street Journal ran a front-page article on the role of economists in research areas outside of traditional economics. The article highlights one economist who says that data suggests that autism may be caused by watching television. Any thoughts?
Roy Richard Grinker: I don't why the TV story is getting so much play. More rain, more time with the TV. People in rainy areas have more autism. Not only is there no relationship that can be demonstrated between TV and a complex disorder like autism, but we don't even know that the prevalence rates in rainy areas is different! It is just an interesting correlation, like the idea that eating ice cream causes crime. Both increase during the summer. So they must be related. A spurious correlation.
Fairfax, Va.: There was news last week about genetic features linked to autism spectrum disorders. Does this affect how we think of these disorders, e.g., that people who have them will be seen as qualitatively "different" and less able to be helped? Or could people see it as confirmation that the disorders are "real," because they are biologically-based? Perceptions about ASD's seem to have some effect on what resources are devoted to prevention and care/education.
Roy Richard Grinker: I don't think anyone ever questioned whether autism was real. But the genetics research does show just how complex autism is. It involves many genes, perhaps all having to work together. The genetic research could end up leading us to describe autism better -- to understand that autism is really multiple disorders, with multiple genetic bases.
Annapolis, Md.: My 10-year-old fourth-grade daughter is autistic and has been struggling of late as to how open she should be about her diagnosis and what she perceives to be the positive aspects of her autistic brain.
She is secure in herself and accepts and positively embraces her autism. While at times frustrated by her disabilities, on the whole she is very happy with whom she is. She is infuriated by advertisements she sees on television about autism that represent it as a tragedy. For her, an autistic brain is largely a positive thing.
She is afraid to go public with her opinions because she is also fearful of the reactions of her peers to the label of autism. She is terrified of leaving the safety of her incredibly progressive elementary school and being bullied in middle school by intolerant, mean-spirited kids from surrounding schools. She knows she is vulnerable to manipulation.
She is also brilliant, and wanting to challenge herself with more rigorous academic pursuits than are presently available to her in school. She has said she would like to home school again (she was home schooled until the end of second grade).
We have over a year to decide and we are inclined to push for more enrichment during school hours.
I have told her that as long as she remains silent about her autism, she is partially responsible for people's ignorance. She accepts that. I have told her the remarkably inspiring stories of Ellen DeGeneres and others who have taken the plunge and been generously rewarded for courageously revealing "invisible" conditions that are socially stigmatized.
I told her she does not need to come out about her condition. She can wait until she is ready. She is inspired and I expect the world will hear from her soon.
This message is just a thank you to everyone contributing to autism awareness and lightening our load.
Any thoughts on the school vs. home school decision from autistic children and their parents would be greatly appreciated.
Roy Richard Grinker: I'm not against home schooling, but for my daughter, being in an active social environment is important to her social development (and the social deficit is really the core deficit here).
Thanks for sharing your story about your daughter. You sound like a great mom.
Washington, D.C.: What's your opinion on the media's focus on low-functioning autism at the detriment of stories covering Asperger's and high-functioning autism (both of which are more common then low-functioning autism)?
Roy Richard Grinker: Do you really think they focus on the low functioning?
Falls Church, Va.: I was tremendously relieved to read your article this morning. My daughter was diagnosed with PDD at the age of 3 1/2 and I am looking for some assurance, if you will, that she can and will with help, build solid relationships. Can we expect that she can have a deep level of intimacy with friends, family and perhaps a spouse one day?
Roy Richard Grinker: People can make tremendous progress. Unfortunately, we don't have very good studies of how kids with milder forms of autism do in adulthood. Adults are pretty hard to find, especially if they are on the milder end of the spectrum.
Re: Insurance Coverage: Was it your experience that you could get incredible services from local and state funded government providers, but that private insurance is unwilling in many cases to cover any services for children with autism? It has been my experience and it is so unfortunate because these services have been critical in helping my son achieve the high level of success he has.
Roy Richard Grinker: Honestly, it's been up and down. Our biggest unreimbursed expenses were legal fees. No matter how the good the school system, it's a fight to get what you think/know is best.
Anonymous: Dr. Grinker,
Excellent book -- thank you for writing it. What types of activities does your daughter enjoy the most? Do you feel that physical activity and exercise is especially beneficial to autistic children?
Roy Richard Grinker: My daughter doesn't love physical exercise, but she communicates better when she's active. I noticed this early on. She'd make better eye contact when she was jumping on a trampoline or swinging in a swing. Today we try to take walks with her and she does communicate better while walking. This must have to do with the sensory issues in autism.
Washington, D.C.: Thank you for sharing your story. I've heard that early detection and therapy are critical. Are there indicators that parents should be looking for at early ages, such as 9 months, 1 year, 2 years, etc?
Roy Richard Grinker: Scientists and clinicians are discovering ways to identity autism earlier and earlier. The problem is: what kinds of interventions do you employ for a 12-month old? To learn about possible signs of autism, you should go to the many Web-based resources through NIMH, Autism Speaks, and others. The Web is full of information but make sure you pay attention to the source!
Silver Spring, Md.: My son was diagnosed with a developmental delay that is slightly less specific than the diagnosis of autism, but there are lots of similarities. I wonder what is the best mix of schooling, therapies, support for him. He sees a psychiatrist, and gets occupational, speech therapies, tutoring, homework help. We try to keep as even a schedule as possible, minimize sensory overloads. My husband and I would like to do everything possible for him to have a more normal life now and in the future. Any suggestions?
Roy Richard Grinker: Of course I cannot comment on your child. But with Isabel we do the sorts of thing you describe. Most importantly, we pick our battles, and try not to get in a fuss about everything. Sometimes we just have to let things be. Sorry, that's not a very specific answer, but I do find that we need to give Isabel more breaks. She works twice as hard as a neurotypical kid, just to sit in the school cafeteria. We don't want to push her too hard!
Washington, D.C.: Why do conspiracy theories and unproven alternative theories have such hold over autism? I have an autistic son and I find this pervasive aspect of our community to be a maddening distraction from much-needed scientific inquiry.
Roy Richard Grinker: As I mention in the book, when disorders are not well understood, when they are complex, people look for single causes and simple explanations. This is just human nature, perhaps? But in a disorder like autism there will be no single cause identified. In whatever culture you may be in, when something goes wrong we need to explain it, whether it's a religious explanation or a biomedical one. We're struggling so hard to understand autism, so it's not surprising that there are lots of hypotheses being thrown around. Also, the vaccine issue is involved here. As Arthur Allen notes in his wonderful new book, VACCINE, anti-government and anti-doctor movements started the moment the first vaccines emerged in Europe at the end of the 1700s.
Arlington, Va.: How can (and what test) testing determine what part of the autistic spectrum a person is on?
Roy Richard Grinker: A child psychiatrist should answer this question. But if he/she did, you'd probably hear that what is most important is figuring out how to help your child rather than coming up with an adjective like mild or severe.
Anonymous: This isn't as directly relevant to your book, but I'm curious if you know whether autism is known to be genetically linked? I am in a long-term relationship with a man whose brother and uncle both have Asperger's, and I'm wondering if this means that, as we start talking about marriage, the chances that he and I would have a child with Asperger's is higher as well? I don't know if there's been any research into this, but I'd appreciate any information you can give me. Thanks!
Roy Richard Grinker: Scientists have done studies with identical and fraternal twins, and the studies show just how genetic autism is. In identical twins (who have the same DNA), the concordance (that is, whether when one identical twin has an autism spectrum disorder the other does two) is between 80 percent and 90 percent, depending on the study. In fraternal twins, who do not have the same DNA, the concordance is between 0 percent and 10 percent, depending on the study. That makes autism more genetic than almost any other complex disorder I know of (breast cancer, heart disease, schizophrenia, bipolar disorder, etc.).
Washington, D.C.: Follow up...to say adults with autism are out there, trust me, even though you have no proof, scientific or otherwise, hits an amazing level of academic smugness. Yes, the definition of autism has expanded.....but so has the definition of cancer.
Show us the evidence and stop hypothesizing without having firm factual basis...you could be doing as much damage as the TV economist.
Roy Richard Grinker: I recently checked with the major funding organizations and unfortunately I could not find evidence of a prevalence study of adults with autism being conducted. The CDC did get one proposal last year (but only one!), but I'm not sure it was funded.
Bethesda, Md.: Who does a mostly high-functioning adult in early 30s go to to get diagnosis and help to determine whether autism is the basis for life-long behavior issues? Are there psychology and therapy specialists who can discern the presence of autism from other anxiety and social behavioral disorders in an adult, or does knowing the basis matter in treatment when starting at this age? In many ways, I am so normal and able that peers assume I am just quirky, but they have no idea of the constant difficulties and frustrations I go through to function in areas related to symptoms common to autism.
Roy Richard Grinker: You should really ask your doctor for a referral. I'm sure you could find help -- but even though you are an adult you might be better off going to someone who specializes in kids, since they will know more about autism and probably ask you lots of questions about your childhood. I wonder if the doctor would ask you why having a diagnosis would make a difference to you? In kids, it's clear: the diagnosis helps give the kid, the family, the schools, a roadmap and framework for services. In adults, the benefit is less clear. In India, I found the autism diagnosis seldom given because the doctor, even if he/she knew about autism would say, "What difference would it make in India? I'll give the diagnosis of mental retardation because everyone knows that, but no one has heard about autism." This situation is beginning to change, however, largely because of the wonderful Merry Barua, who I profile in the book.
Ashburn, Va.: Mr. Grinker: I run a spiritual support group for moms and dads of children with autism spectrum disorder and other special needs in Loudoun County. From your experience and research, how often does the press of time and money devoted to multiple therapies for autistic children burn the parents out so much that they find it really hard to connect with their own spirituality and to use their faith as a support?
Roy Richard Grinker: Much of my book deals with questions about spirituality and religion. Churches are really important players in providing support to families with autism: in Korea and South Africa, (less so in India, in the case of churches, but spirituality is really important). A key Biblical passage, Corinthians I, where we learn that even the parts of ourselves, our societies, our bodies, we might not like are still part of the body of Christ and should be worshipped. This is inspiring to me, and to other families who see their children appreciated in the church. In Korea, families with autism go to church even when they don't believe in God! Hope this answers your question.
Washington, D.C.: I am a physician and have a 9-year-old son with many diagnoses. We have been told he definitely has HFA (High Functioning Autism), he definitely does not have autism, he had PDD, he does not have PDD, he has ADHD. He is aggressive at times, very aggressive, mostly with me. He is now doing great in school, once we had him in appropriate placement. He has speech problems, and I think his frustration level just gets to the better of him. I think because he is so smart and complex he is a difficult "label" to read. I need some support group in the D.C. area that will help me with discipline issues, as well. I am frankly burnt out; he has tried my nerves. It is not all roses out there in the community. Even though I know people in the field, it is hard to find dedicated people that will not charge more than $150-300 just to meet your child. We have spent thousands on various therapies. I am beginning to feel like a bank account that is still getting hit regularly from my son. I only work part-time and I really have been through hell over the years getting consistent, good care. We have done whatever has been recommended to us but he still has trouble with relationships .
Many of our experiences in the community have focused on how we can be better parents before we had a diagnosis, which I have accepted will never really come. It really does not matter anymore, he is my son and I love him. We have been to all the gurus in the area and had their opinions and my son still can have aggressive rages. He is on medicine, and we have tried various combinations.
I need support. The ADHD CHADD groups have been helpful but he is worse than many straight ADHD patients; One autism group I went to the children were much sicker than my son. He is really great 95 percent of the time but cannot control his impulses well when he is upset. I feel like I have been to every parenting class, read every book on the issue and still am back where I started. We have had plenty of family therapy as well. He is, however, markedly improved at school and starting to make friends; home is hard. Negative discipline has not helped but ignoring his behavior does not work.
Any info would be greatly appreciated. I am getting depressed as I feel I have been abused, albeit unintentionally by my son.
Roy Richard Grinker: I am sorry I have to sign off. I wish I could have answered all your questions!
Roy Richard Grinker: Sorry I have to sign off. I wish I could have answered all your questions!
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