Piecing it Together
Robert and Clarice Burkgren Devote a Lifetime Advocating for Autism
In 1972, Robert and Clarice Burkgren welcomed their new daughter, Beth, into the world. Early on there were concerns, first with seizures, followed by what doctors described as “developmental delays.” In the early 1970s, little was known about the word “autism.” Even less was understood about the disorder that, at that time, was thought to affect 5-10 persons in 10,000. In August 1975, when their daughter was identified as autistic, the Burkgrens had no idea they were embarking on a journey that would put them at the forefront of a disability best recognized by the symbol of puzzle pieces that represent a disorder shrouded in both mystery and complexity. Indeed, autism is defined as a “spectrum disorder.” It affects individuals differently and to varying degrees, with no two persons alike. Be it mild or severe, there is still no known single cause, no blood test to confirm its diagnosis.
While numerous programs for children with disabilities are available in schools today, such was not the case in 1975. The passage of landmark legislation that year, PL-94-142, guaranteed a free, appropriate public education to each child with a disability. The law had a dramatic, positive impact on millions of children with disabilities throughout the nation. Prior to 1975, few educational programs for children with ANY developmental disabilities existed, and even less was known about autism than Downs syndrome, cerebral palsy or mental retardation.
Early on, the Burkgrens discovered the guarantee of an educational program did not come with a high level of expertise. As one of the first students identified with autism at her school, teachers initially acknowledged Beth’s disability was new to them. Because they, like the Burkgrens, knew little about autism, Beth’s teachers suggested they “learn together.”
It was in 1977 that Robert and Clarice discovered they were not alone seeking answers to the many questions autism was posing for their children. The realization that a support group for parents met regularly in Fort Dodge led to the establishment of a similar group in Cedar Rapids the following year. With the formation of the East Central Iowa Chapter, the Burkgrens had a support group closer to home, though the frustration over the lack of appropriate educational programs for children with autism remained. During this time, the Burkgrens continued to attend whatever meetings and educational conferences they could, in an effort to learn more about the disability and ways they could help their daughter.
A summary of the findings of a State Ad Hoc Task Force for Autism in the 1970s illustrated the profound lack of services available to autistic children at that time. In Davenport, less than ten students were being served by two programs. Mason City was serving three or four students in a preschool program. Fort Madison was planning to start a new program in 1979, while Fort Dodge was discontinuing a program that had been serving two children. In Cedar Falls, Beth Burkgren was the lone student identified with autism in her school, and her classroom could best be described as one designed for students with behavioral disorders. Such was the state of the educational community as it related to autism some 35 years ago.
The Burkgren’s quest for knowledge kept them heavily involved in networking with other parents and educators, in an effort to develop programs for a woefully underserved population with special needs. Their passion was best summarized by Frank Warren, Director of National Society for Autistic Children (NSAC):
“There should be no need to say again what all parents of autistic children know. We persist because we love our children, they need us desperately, and few others are willing to take up the fight. We strive beyond normal endurance because we know that the very lives of our children depend upon it, and we must make change, for their sake, or they will die unseen, their beauty unappreciated, locked up, unloved and alone.”
In the late 1970s, the Burkgrens were part of a small group that formed the Iowa Society for Autistic Children (IaSAC), an affiliate of the NSAC. Membership in the IaSAC gave parents an even stronger support system. In addition to networking with other parents of autistic children, there were conferences and symposiums offered featuring some of the most prominent educators and researchers sharing the very latest information the educational community had to offer about autism. Membership also gave parents access to newsletters, journals and a lending library of books and videos. While Robert served as the organization’s second president, Clarice served as the Membership Chairperson for several years, in addition to Treasurer from 1987-2010.
As the years progressed, the Burkgrens immersed themselves in the IaSAC, extending its reach to address legislative issues at the state and national levels. A letter writing campaign, for example, was instrumental in removing autism from the “Severely Emotionally Disturbed” classification in the early 1980s.
In the late 1980s, IaSAC amended its Articles of Incorporation and changed its name to Autism Society of Iowa (ASI), its mission to provide Advocacy, Support and Information to individuals with Autism Spectrum Disorder, their families, professionals and communities throughout the state of Iowa.
Starting from literally nothing, the first ten years of the Burkgren’s involvement in ASI was focused on building a foundation for the organization that would allow it to serve as an advocate for families affected by autism. The Burkgrens were active in the organization’s second ten years as well, serving as parent representatives on the Area Education Agency’s Autism Resource Team, as well as helping to secure state funding to develop additional programs. In the early 1990s, ASI worked diligently to ensure autism was identified as a distinct disability in the Individuals with Disabilities Education Act (IDEA), signed into law by President George Bush.
In 2003, ASI celebrated its 25th anniversary. The Burkgrens were honored with fellow charter members, Lee and Mary Zmolek. The growth in the organization was evident based on its activity in the legislative process, tracking relevant bills and working to make sure those affected by autism were not overlooked. As school programs for children with autism were developed and honed, ASI began to address issues faced by adults with autism, working feverishly to promote the belief that those with autism have the opportunity and the expectation to become productive members of society.
In the past 40 years, much has changed about how the world views autism, thanks to effort of people like Robert and Clarice Burkgren. From November 13, 1978, when they were present at the signing of the Charter with the National Society for Autistic Children to April 2014 when they announced their retirement from the Board, the Burkgrens have devoted a lifetime to making sense of the pieces that comprise the autism puzzle. For Clarice Burkgren, one task as a Charter member remains- writing the history of the Autism Society of Iowa organization. In it, she explains why she and her husband have devoted 35 years of their lives to this important cause.
“In the beginning, we ourselves needed to learn about autism. We knew nothing about it and finding information was not easy. We needed to get to know other parents who had the same concerns, problems, sorrows and yes, even joys. Perhaps, at first, I imagine we did start out as a very simple “Support System for Parents,” but I assure you it didn’t take very long for ALL OF US to realize that we were not the important people in this story. Our children were the important ones! We, the parents, had as our duty to serve as their advocates!”