My daughter was diagnosed at age 2.5 years with both autism and a major intellectual disability. She had been slow in meeting her developmental milestones and did not walk until 17 months. At age 2.5 years, she had no spoken language and did not respond to her name. My wife and I were crushed by the diagnosis, but we read what we could and decided to focus on both loving and accepting her, as well as trying to help her as much as possible. We started intensive behavioral therapy and, by age 5, she had learned a few words and was beginning to make some progress. We slowly discovered multiple medical issues that were treatable, which helped her. These included sensitivity to foods with gluten or dairy; avoiding those reduced problem behaviors. We also discovered she had hypothyroidism, and when she started a thyroid supplement, her energy level increased substantially. We added vitamin/mineral and other nutritional supplements, and she slowly made developmental gains. We tried several psychiatric medications, but those generally made her worse, so we stopped them. At age 18, she was functioning academically at about second-grade level, and her language was about that of a 4-year old. She started in a vocational program while in high school, working 2 hours/day at different volunteer jobs in the community, and that really helped build her work skills. She struggled greatly at the start of the program, but eventually did very well once she learned the skills, and she received the Outstanding Disabled Employee award from the mayor of Tempe, Arizona. Due to her success despite her challenges, I think of her as “the little engine that could.”
Today she enjoys working in an internship program for adults with autism that provides long-term care services for people with more severe disabilities. She has worked there for 3.5 years and has rotated through several internship positions, including laundry, housekeeping, and arts. She works 5 days/20 hours per week and earns almost minimum wage. In her spare time, she enjoys Special Olympics, including bowling, volleyball, and cheerleading. She generally is very happy and lives with her mother and father. She is friendly with people and has just begun to ask to have friends come to hang out with her, for the first time in her life, which is exciting.
I became president of the Autism Society of Greater Phoenix in 2000 and have served as president since then. It has grown from one small meeting per month to 26 meetings per month spread across greater Phoenix, thanks to the help of dedicated staff and many volunteers. We provide a huge number of services to families, including an annual conference, newsletter, Facebook page, email listserve, monthly speakers, support groups, Lego clubs, social activities, transition fair, and job fair.
Although I am an engineering professor, in 2000 I began shifting my research into looking at the causes of autism and how to best help people with autism. Our research has focused primarily on biomedical interventions, including nutritional/dietary interventions and treating gut problems.
I enjoyed serving as a reviewer for the Congressionally Directed Medical Research Programs for several years. I especially like their focus, not just on great science, but also on innovation and impact, as well as their use of consumer reviewers. In 2016, our team (including Professors Richard Frye and Rosa Krajmalnik-Brown) were thrilled to be awarded a grant from the Autism Research Program Fiscal Year 2015 Clinical Trial Award for treating gastrointestinal and autism symptoms in adults using Microbiota Transplant Therapy (MTT). The trial is evaluating MTT in individuals with Autism Spectrum Disorders (ASD) who have gastrointestinal problems and assessing the potential role of gut bacteria therapy on both gastrointestinal and ASD symptoms. A previous pilot study in which MTT was administered to 18 subjects with ASD and gastrointestinal problems demonstrated an 80% reduction in gastrointestinal symptoms, as well as significant improvements in ASD symptoms. I am excited by the progress we have made in successfully treating adults with autism and seeing the impact it has on improving their happiness and quality of life. If successful, this work is expected to help approximately 40% of individuals with ASD who suffer from chronic gastrointestinal problems.
Kang DW, Ilhan ZE, Isern NG, Hoyt DW, Howsmon DP, Shaffer M, Lozupone CA, Hahn J, Adams JB, Krajmalnik-Brown R. 2018. Differences in fecal microbial metabolites and microbiota of children with autism spectrum disorders. Anaerobe. Feb;49:121-131. doi: 10.1016/j.anaerobe.2017.12.007. Epub 2017 Dec 22. PubMed PMID: 29274915.
Kang DW, Adams JB, Gregory AC, Borody T, Chittick L, Fasano A, Khoruts A, Geis E, Maldonado J, McDonough-Means S, Pollard EL, Roux S, Sadowsky MJ, Lipson KS, Sullivan MB, Caporaso JG, Krajmalnik-Brown R. 2017. Microbiota Transfer Therapy alters gut ecosystem and improves gastrointestinal and autism symptoms: an open-label study. Microbiome. Jan 23;5(1):10. doi: 10.1186/s40168-016-0225-7. PubMed PMID: 28122648; PubMed Central PMCID: PMC5264285.
Last updated Tuesday, April 2, 2019