Autism is one of the most prevalent neuro-developmental disorders among American children. Its cause is unknown. Its impact on those who have it or those who care for them can be very difficult and challenging.
Tom Martin talked with Amanda Ralston, a board-certified behavior analyst specializing in treating children with autism spectrum disorder and other developmental disabilities. Her practice, Verbal Behavior Consulting is based in Lexington.
Q: You specialize in autism spectrum disorder. Let’s begin with a definition of autism.
A: Autism is a pervasive developmental disability. Individuals on an autism spectrum will have marked deficits in major areas including communication, social interaction. They will have difficulties with eye contact in a lot of situations. They may have stereotyped or repetitive behaviors. But, every individual with an autism spectrum disorder is completely different.
So, having a diagnosis of autism basically means that you are within a very wide range of skills and abilities, deficits, and excesses.
Q: Is autism prevalent in Central Kentucky?
A: Certainly more prevalent than some may realize. Autism is now currently diagnosed as one in every 68 individuals, including one in every 42 boys. So, the statistics here in Kentucky are no different than they would be in New York or somewhere else worldwide.
But, I jokingly tell people that autism is sort of like the gay uncle of the diagnosis world at this point. Everybody either knows somebody who has one or has one themselves.
Q: Can people with autism be helped?
A: Absolutely. Because it’s a spectrum disorder or diagnosis, you’ve got every possible range of ability or disability in some cases for these individuals. And so, the goal with therapy for us is always to maximize independence and happiness for that particular individual and the families.
Q: How does autism affect behavior? What are some of the things that you see?
A: From the deficit standpoint, the things that the individuals with autism often have difficulties which include eye contact, understanding social cues and norms.
Behaviors can range — especially for the individuals that are more profoundly affected by autism — from degree of aggression, self-injury, such as self-harm by hitting their head or slamming their head on the table or on the floor on a wall. They can scratch themselves, they can scratch others. Some of the more severe behavior they can get into includes things like eye-gouging.
There are some fairly significant problem behaviors that can go along with these diagnosis, but having a diagnosis with autism in it of itself does not necessarily mean that you will see any of those behaviors with an individual.
Q: In your work, do you find businesses, schools, other organizations interacting with autism in some way, and in what ways?
A: Yeah. Verbal Behavior Consulting, our group has contracts with about eight school districts around Central Kentucky. And I’ve been working with those school districts from since 2001.
So, it depends on each individual location. The more rural areas have a different set of skills, understandings. They tend to be more tight knit as a group and so, there’s a lot of helping that occurs within those areas.
Q: And, what about the parents of children or people with autism? They are going through their own challenges?.
A: Absolutely. I mean the average cost of having a child with autism is about $60,000 per year.
Q: You mentioned some tight-knit communities where it’s more likely that parents are going to find some help from neighbors and friends. What about those who don’t have that kind of support? Do you and your practice help them manage their lives?
A: I started doing this therapy and working with individuals with autism after I graduated from Centre College in Danville. And, it just so happened that I had a friend here in Lexington that was doing ABA therapy by way of having a consultant fly out from California. The cost would be split between about three different families. And that consultant would teach a group of tutors.
This consultant would fly out from California and spend a weekend teaching everybody “what to do” and how to take data on it, then pack up their bags and fly back to California.
So, I first became board-certified as a behavior analyst in 2001. At the time, there were only 500 board-certified behavior analysts in the world. I learned about it through my mentor, Dr. Vincent Carbone, one of the pioneers of the verbal behavior approach within Applied Behavior Analysis.
Part of what we’re trying to do is standardized care and standardized conduct ethics and best practices, evidence-based methodologies so that there is actually a professional bar to be met related to the quality of treatment.
The hope is that as we continue to grow as a field that there will be more and more board-certified behavior analysts and registered behavior technicians that will actually be able to provide that care and they’ll be covered by either Medicaid or insurance.
Q: For parents, to come from the chaotic conditions that one might live in into some structure must be quite a relief.
A: Oh, goodness, yes.
We have very specific prescriptives for how often we update the programs and re-assess the individuals and make sure that the data is matching what we’re doing and showing progress or we’re going to fix something if we’re not actually showing progress versus our data. So, there’s not a lot of guesswork done with applied behavior analysis, it’s all data driven.
Q: What kinds of jobs can individuals with autism do and how can people who have autism learn job skills?
A: Because it’s a spectrum disorder and because you have a wide range of abilities and different metrics related to intelligence, you’ve probably got individuals on the spectrum that you work with on a regular basis and you don’t even know it.
On the other hand you have the more profoundly affected individuals who are going to need some more specific supported employment for the rest of their lives.
Q: Have there been advances in autism research in recent years?
A: I believe over $30 billion in National Institute of Health funds is allocated annually and only $169 million of that is actually allocated toward funding autism research which is .55 percent of the total budget which is not much considering this is the fastest growing developmental disability.
Tom Martin's Q&A appears every two weeks in the Herald-Leader's Business Monday section. This is an edited version of the interview. To listen to it, find the podcast on Kentucky.com. The interview will air on this week's edition of Eastern Standard, Thursday at 11 am on 88.9 WEKU.