Expert Interview Giving and Receiving the Diagnosis of Autism
An Expert Interview With Roy Q. Sanders, MD
Medscape Editor’s Note: What is the best way to tell parents that their child has autism? Why? What assumptions and misconceptions do you most often have to confront? On behalf of Medscape, Randall F. White, MD, FRCPC, interviewed a specialist who brings a special perspective to his work: Roy Q. Sanders, MD, Director, Psychiatric Services, Pediatric Neurodevelopmental Center, The Marcus Institute and Assistant Professor of Psychiatry, Emory University School of Medicine, Atlanta, Georgia. Dr. Sanders has a son with autism.
Medscape: You have made the diagnosis of autistic disorder in a child and then had to tell the parents. Is there any approach you’ve found that can make it easier on them?
Roy Q. Sanders, MD: Usually, parents come to me already with an idea that there’s something going on that doesn’t fit with their idea of how their child should be developing. Sometimes they come in having preconceived notions about what those labels are or what’s wrong. Sometimes they don’t; sometimes their preconceived notions are off the mark. During the course of the clinical interview, you have to gauge where the parents are, what they’re thinking about.
Frankly, a lot of times these days, people have an easier time hearing a diagnosis of autism than they do of an intellectual disability or mental retardation. The problem a lot of times is the kids who have both intellectual disability and autistic disorder, which is the majority of kids. So talking about those things together is the harder thing to do because people have this impression of autism as not having a component of intellectual disability, and the common belief is that autism somehow represents some form of genius. That becomes difficult to dispel and tell people that there may be people with autism who have superior IQ, but those are the exception just as in the general population, and the reality is that most people with autism have intellectual disability as well. A lot of times I ask the parents, “What do you think is going on, what is it that you believe is happening?”
When my son was diagnosed — I guess he was 2 years old when we received his diagnosis of autism and mild mental retardation — even though I knew that was going to be the diagnosis, I was still incredibly angry with the pediatrician who gave me the diagnosis, inexplicably so. I didn’t expect to be angry, and I don’t know how she could have set it out differently to make it any easier, but there was enormous anger on my part. So I recognize that when I’m talking to parents.
Medscape: I want to come back later to your own experience because I think that’s important and unique to you. Tell me how you would handle the situation in which you have transference or a displacement of anger.
Dr. Sanders: I really sit and let the parents experience what they must experience, and sometimes that means sitting for a while and just letting things sink in. I think it’s important sometimes to give some distance, and then I’ll try to probe a little bit. I’ve had parents who will just outright reject the diagnosis, and it won’t matter how I try to probe or ease them into talking about it. Some parents do that beautifully, but there are some parents who can’t hear that. They will leave and usually go to find a second opinion somewhere else. We always offer a second opinion, either to see one of the other specialists here, or I have a list of other practitioners in town who work with kids with autism or developmental delays. So it’s about trying to establish a rapport from the very beginning and working through it to the end and listening to the parents.
Medscape: What assumptions and misconceptions about autistic disorder do you most often have to confront? How do you explain the cause?
Dr. Sanders: There are a lot of people who have different theories about what they believe may have caused their child’s difficulties, and generally I try to not directly challenge or not take those ideas away from parents, especially when I’m first meeting with them. If they believe that immunizations caused the child’s autism, I don’t get into it with them, but as we go along, over time those issues will come up again and again and we may dispel some of those notions, or it becomes a nonissue as we move forward in treatment.
The other thing is, I try to be really careful about not completely disregarding complementary or alternative sorts of treatments, but I do draw a line around such treatments that I feel may be harmful to the patient. So in patients who are involved in IV chelation, strange behavioral interventions, or taking different sorts of medications that don’t have good clinical research backing them up and may have harmful side effects, I do challenge the parents to be careful. And there are a lot of unscrupulous doctors who don’t have training in developmental disabilities and who are willing to takes parents’ money to perform all sorts of treatments that don’t necessarily create any good and may cause significant harm for the kids.
Medscape: The question of prognosis must always come up. How do you handle that?