An estimated 1 million adults in the United States live with autism spectrum disorder, which occurs once per 88 births. UNT plans to tackle those statistics with research and services at the Kristin Farmer Autism Center, a collaborative program. Dawn Figueroa, assistant curator of the Texas Fashion Collection, and Robert Figueroa, associate professor of philosophy and director of the Environmental Justice Project, discuss experiences with Soren Dale Figueroa, soon to be 9 years old. Above, from left, Nyomi, Dawn, Soren and Rob.
When was Soren identified as a child with autism?
Rob: We identified indications as early as 1.5 years. Extended family members also noticed repetitive behaviors. At 2 years, his verbal delay was fully established, and some basic signing, tremendous patience and communication allowed us to identify his needs, use non-verbal and verbal indicators. At 2.5, Soren was assessed by a team in New York, in the County of Madison and Hamilton School District service areas, to evaluate his special education needs. No autism diagnosis was established, but services provided through therapies (occupational, physical, speech, behavioral and daily 12-month special education pre-school) were provided that would trump most of the nation's public school services for autism. His teachers and therapists unofficially identified autism and approached his needs in that fashion. We moved here when Soren was 4, and he was assessed for the Lake Dallas ISD, which established his first official diagnosis of autism and speech disability. We came from the poorest county in New York to the DFW Metroplex where we found his services cut by two-thirds.
What services have you used?
Dawn: Mostly we have used the public school system and because Soren has progressed to high functioning, that has worked for us. We’ve welcomed all services that are offered, including home and parent training. We haven’t judged anything until we first try it. We have used Easter Seals, Spirit Horse for several years, and TWU swimming classes provided in cooperation with Denton ISD. We have seen and consulted with a DAN (Defeat Autism Now) doctor. We get out and socialize Soren as much as possible - to local parks, grocery shopping, trips to the mall, the zoo and family visits. We have not allowed his behaviors, or behaviors from uneducated community members, to stop us from getting him out. We have friends with children with autism who have been a tremendous resource and support. I have taken part in a local support group.
Honestly, other parents, people who have been there have been our greatest resource and support, and the special education teachers who get it - the autism whisperers. Having a society that takes autism seriously and with concern and compassion is a huge part of the hurdle to health and happiness for families.
Have you researched autism? Do you have ideas about its cause?
Dawn: I subscribe to the Schafer Report, a non-profit, non-commercial newsletter run by volunteers. It is a collection of research and news articles relating to autism. Rob and I share books on the topic. I am currently reading Carly’s Voice (a book by autistic teen Carly and father Arthur Fleischmann.) I also subscribe to Autism Speaks. I have researched the gluten and dairy-free diet and applied it to Soren. It solved his GI (gastrointestinal) issues and also relieved his sensory issues. I do think there are genetic and environmental components to the cause. By environment, I mean diet, modeled behavior, toxins in our everyday products and life. I think there is an auto-immune component to Soren’s autism, and I suspect micro-bacterial issues. I see autism traits throughout both Rob’s and my family, and in other families of children with autism, but it is worsening these days.
Rob: I do autism research in my work on environmental issues and in social justice issues with disabilities and ethics as well as the issues of self-advocacy in Asperger's/autism communities. I've read a number of books, and initially began as a typical academic reading studies and academic research. The academic material depressed me because it failed to speak to either me, my experiences, or to Soren. When I read Temple Grandin's book Thinking in Pictures, which a friend gave me as a present - a signed copy! - it spoke to me and Soren so directly that I realized I wasn't in a world with someone with autism, but I was in the autism world, and my whole point of view and interaction and relationship with Soren changed.
On that note, for me, no one has done more to connect Soren to his family and the family to Soren than his younger sister, Nyomi Blue Figueroa, 6. She completed the connection and translation for us as she was learning to speak and she grew through her life sharing in his therapies and our communications.
In 2008, I worked with the Autism Research Cluster and during the summer 2008, I was its coordinator. So, I was honored and humbled to be with the most outstanding educators for autism and researchers of autism that I can imagine.
What is your expectation for Soren’s future?
Dawn: Soren is an inspiration to me personally, and to others. He has shown so much growth and capabilities. I expect he will live an independent life with a career, but he will need to have supports.
Rob: I am right in line with Dawn. Soren is an amazing inspiration and is to our fortune a very sociable and loving person given the autism and speech disability that often isolates individuals from social interactions. So, he has something of an impact on others and they tend to receive him well. I believe this will be trickier as he grows and folks will expect "normalcy" since he doesn't give the immediate impression of any disability or autism.
I have similar hopes as Dawn; however, I know these are hopes and I am very cognizant of the fact that I may have Soren as a dependent his whole life. Nonetheless, in his development and how far he has come, I do think he will carry a job, hopefully angle into higher education if he ever gets over how much he doesn't like the challenge of school, and if he lives independently (which is more difficult for me to imagine right now) he will still require a very close interaction with his family - maybe daily. His insatiable appreciation and love of animals makes me think he's going to take that on, rescue or something similar, as a lifestyle and career.
Above, from left, Nyomi, Dawn, Soren and Robert Figueroa.
(Photo by Jonathan Reynolds)
Posted on: Wed 22 August 2012