Person-First Autism Research and Early Intervention: An Interview with Dr. Rebecca Landa

Dr. Rebecca Landa, a professor of Psychiatry and Behavioral Sciences at Johns Hopkins University, is a highly influential autism researcher and the founder of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, Maryland. Some of her research publications include, Longitudinal Effects of Adaptive Interventions With a Speech-Generating Device in Minimally Verbal Children with ASD and 18-month predictors of later outcomes in younger siblings of children with autism spectrum disorder: a baby siblings research consortium study. Her research has focused mainly on the neuropsychological communication and language processes of autism throughout an individual’s life and the increased likelihood for ASD of siblings to individuals with the disorder. I interviewed Dr. Landa for an interview series on my blog, The Real Spectrum. After reading over some of her research for other posts on my blog, I wanted to talk about her research with the researcher herself.

Q. How did you decide to go into autism research?

I was an undergraduate student studying speech pathology and I was trying to really understand how language is learned and if a child had a language disorder, what would be the correct approaches to improve the child’s language learning. So, I started doing research and the person who was doing the most research at the time on autism was Professor Sir Michael Rudder. I started reading his work often and when I got into graduate school, I got a client with autism and I began to think about how language learning for autistic people is very difficult and I wanted to understand why. I considered that if I could figure out how to teach language and communication where there is a neurobiological difficulty component, then I would have the tools to support any child with a language disorder. So, that is how it started and once I really started to work with autistic youth, I just fell in love with them. I enjoyed being with them. I enjoyed learning from them so it definitely became one of my joys.

Q. When I read about the research you’ve done on autism being hereditary, and I examine the characteristics of my brother’s autism diagnosis, I sometimes feel I have some of those same characteristics, yet, I do not have an autism diagnosis. What does your research suggest about this idea? 

a. This is known as the broader autism phenotype, which usually connotes that there is some level of challenge in one or more of the domains. You may not have any of those challenges, so there wouldn’t be a categorical name. Some people talk about that as similar to a shadow syndrome (a mild form of a serious disorder like autism; syndromes that we all have but we don’t fit the diagnosis entirely). One thing that we’ve really seen is that what doesn’t seem to be inherited in most cases where there is a child with ASD where we don’t know the cause, there doesn’t seem to be intellectual or developmental delay that is inherited. What seems to be more familial is things around social communication and other personality characteristics or tendencies, which siblings with autism tend to relate to more. 

Q. When I was younger I often felt that my brother “ruined” things, meaning his behavior and lack of self regulation would require our family to not go on vacations or family gatherings. What advice would you give to someone with an autistic sibling?

a. First of all, siblings carry a lot. I think the most important thing I would do is ask the sibling how they’re feeling, to get their perspective, and to ask them what their priorities are and how they would like to meet them. I would make sure that there would be frequent understandable explanations of why the sibling with autism has certain experiences. Siblings also usually have deep insight so I would be sure to ask them how they think certain situations can be resolved or altered to maintain a healthy home environment. 

Q. What have been the most effective interventions you have found and why?

a. I’d like to talk about early intervention to start. The most effective intervention strategy for me is meeting kids where they are and incorporating their interests into the intervention. The number one thing for success in intervention is the child’s engagement and attention. Everything will eventually flow from there. The other thing is to really understand the developmental process. I don’t see intervention as a skill building exercise; I see it as helping children develop cognitive, linguistic, and social capacities to construct meaning from their experiences.

Q. Regarding the nature vs. nurture debate as it relates to autism, can you describe your research about environmental factors contributing to ASD diagnoses?

a. There is a principle in neuroscience called experience dependent neuroplasticity – the brain’s ability to be altered as a result of experiences, environmental cues, learning, etc. That is part of your answer. Additionally, there is a theory that has been laid out based on neuroscience evidence that is called neuroconstructivism. Biology, of course, determines things but won’t always have the final say in whether the child has the disorder or not. If you don’t mind, I do want to say something somewhat related to this. For kids who are showing early indications of ASD or who have ASD, sometimes the kids look like they can’t do things and adults will kind of write it off and say, “No, they can’t do it.” However, every move the child makes, every object that they touch, every visual or visual motor experience they have matters. In my intervention, I want to guide the kinds of social interactions that will lead to those epiphanies for kids. I just want to say that I never consider biology as being the final determinant of being diagnosed with autism.

Q. How can young researchers like me contribute to ASD research?

a. I would say first off doing exactly what you are doing: learning from the people before you, learning from the experts in the field, learning from people with autism. All of these things are absolutely essential. Keep a notebook of your questions: what are the things that intrigue you? Over time, you’ll start to form your own thoughts, your own theories, and consider other theories in the field.

Q. What can you say to young girls who would like to pursue subjects in STEM?

a. Follow your passions! I would give a big caution and that is to be aware of your fears and face them because a lot of times people may think they can’t do something but if they don’t learn it the first time, then they will definitely get it after other tries and after receiving encouragement. Be bold! Be brave! Be inquisitive. Keep pursuing until you find the avenue that opens doors for you. 

Overall, speaking with Dr. Landa was very inspiring, however, what I appreciated most was her use of “person-first” vocabulary. Before answering some questions, she asked me if I wanted to hear her response in “diagnosis-first” vocabulary or “person-first” vocabulary. Unsure what she meant, I asked her to speak as she would to anyone about her work. Choosing the “person-first” vocabulary, she meant that she would talk based on the fact that the child with ASD was a human before being diagnosed with the disorder – that the disorder didn’t define their life nor their choices. 

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