The following is an Interview with Dr. Esther Hess regarding her upcoming research study and understanding the feelings of the neurotypical siblings of children impacted by autism.
Editor: Dr. Hess, I understand that you are conducting a research study to better understand the feelings of neurotypical brothers and sisters who have siblings impacted by autism.
Dr. Hess: Yes, I am currently collaborating on this project with my colleague, Dr. Ted Hutman, a research specialist in autism at UCLA.
Editor: What stage of the study are you currently in?
Dr. Hess: We are currently looking for neurotypical children ages 5-13 years, who have brothers or sisters that are impacted either by autism or Down syndrome.
Editor: What interests you in this subject?
Dr. Hess: Both Dr. Hutman and myself are developmental psychologists. I also am the executive director of a multidisciplinary treatment facility in West Los Angeles, Center for the Developing Mind. The Center specializes in the assessment, diagnosis and treatment of children impacted by developmental/regulatory disorders like autism. After working many years, with hundreds of children impacted by developmental delays, I have become a strong advocate for the need to treat whole families, because children on the spectrum do not live alone. Despite numerous studies on children with autism, there have been relatively few studies that have looked at the impact of this disorder on the neurotypically developing brothers and sisters.
Editor: Dr. Hess, what do you imagine that you will discover?
Dr. Hess: Our various hypotheses have actually come out of a series of conversations that Dr. Hutman and I have had, where we started out recounting the stories of some of the families who we have both seen over the years. For example, I run a social skills group for neurotypically developing sibs and in the context of our group discussion many themes emerged. These children felt responsible for their brothers or sisters on the spectrum. They were simultaneously embarrassed by them but also embarrassed for their impacted sibling, if their brother/sister misbehaved, acted strangely or was bullied in school. There was, in general, a greater sense of responsibility amongst these children who felt that it was their responsibility to look after their atypically developing sibling and that likely it would be their responsibility to look after this brother or sister once their parents could no longer do so.
Editor: It sounds like these typically developing siblings are growing up too fast.
Dr. Hess: Well, that’s one of the things that we are going to investigate. We are also looking at the levels of anxiety and depression that these children might be experiencing and simultaneously exploring the impact of autism on the parents. This part of our study will be looking at the feelings of mothers and fathers of children on the spectrum and seeing if there might be a connection between the way the parents are feeling and the subsequent feelings and actions of their neurotypically developing children.
Editor: I also understand that you are going to be doing a comparative study as well.
Dr. Hess: Yes, we are planning to also look at the feelings of neurotypically developing brothers and sisters where the impacted child has another kind of developmental delay, Down syndrome. While research is working hard on trying to understand the origins of autism, we do know a great deal about Down syndrome. Down syndrome was formerly called Mongolism because of the characteristic facial and body features that children with this disorder have. Unlike their autism counterparts, where a child with autism is not usually identified until around the age of 2 years, children with Down syndrome are often able to be identified in utero. Dr. Hutman and I will also be looking at and trying to determine if there are differences in the feelings of families where the impacted child is impacted autism versus Down syndrome. And finally, we are going to contrast both of these groups of families where there is a child with a developmental delay to families where there are no developmental concerns and look at differences in feelings of brothers and sisters that have been matched in regards to age and other various demographics.
Editor: What is the research protocol and how can families contact you if they want to participate?
Dr. Hess: We will be conducting a 15-minute interview with the child and a 30-minute interview with the parent. Families are welcome to contact me at Center for the Developing Mind either by phone (310) 444-0111 or by email. Dr. Hutman can also be reached at (310) 825-3478 or by email.
Editor: Thank you, Dr. Hess, for your time, and we are all looking forward to the results of what is obviously an exciting and much needed expansion of our knowledge about how developmental delays impact the whole family.