The consumer advocates for the Autism Research Program (ARP) each provide a unique and necessary viewpoint on the issues most relevant to the autism community today. One consumer advocate, Karen Krejcha, joined the ARP as a peer reviewer in fiscal year 2016. She was gratified that the Congressionally Directed Medical Research Programs (CDMRP) and the other scientific peer reviewers valued and were influenced by the consumers’ opinions regarding each application. She was also impressed by the breadth of topics encompassed in the applications and appreciative of everyone involved in the program who devoted their time to improving the lives of youths and adults with autism. In April, Autism Awareness Month, Karen again lends her perspective to the ARP to aid in the ARP’s celebration of the struggles and achievements of individuals living with autism. Her experiences highlight the reasons research funded by the ARP is so critically important.
Karen is the Executive Director of Autism Empowerment, a 501(c)3 nonprofit organization based in Vancouver, Washington. She founded the organization, along with its publication, Spectrums Magazine, for which she also acts as editor, together with her husband in June of 2011 after recognizing a need for a positive and proactive autism organization run by and for the autism community that focuses on acceptance, enrichment, empowerment, and positive trajectories for individuals and families impacted by autism. The road that led her down the path that culminated in the founding of Autism Empowerment was long and winding and literally led her across the country.
Although Karen and both her sons, Ryan and Justin, were ultimately diagnosed with some degree of autism, their diagnoses occurred in reverse chronological order. Ryan, her youngest son, was diagnosed at the age of 2 after he experienced a regression in language development that had appeared to proceed normally until he was 18 months old. At that age, he lost the vocabulary he had gained and began grunting and pointing at objects instead of saying their names and waving backwards rather than forwards when greeting people. He had exhibited earlier warning signs, including lining up his cars by shape, color, and number and spinning, jumping, and walking on his toes, but because this was behavior Karen had engaged in when she was a child, she did not recognize anything amiss. Her elder son, Justin (9), was diagnosed with Asperger’s Syndrome a few months later, and even later, Karen was also identified as autistic.
Karen and her family struggled to regain equilibrium after her children’s diagnoses. A strong foundation in family values, religion, and personal fortitude helped them shape their new reality, but they wanted to seek solace and advice from others dealing with similar struggles. Karen was astounded by the lack of meaningful support and resources available to families living with autism. She mined the Internet and community for help, including message boards and support groups, but often found the rhetoric to be negative and unsupportive of the probability of her family ever developing a sense of normalcy.
Dissatisfied with these experiences, Karen and her family sought a positive community that was supportive of change and improvement in autism on a national scale. Her first contact with advocacy groups occurred in 2009, while attending a national conference for the Autism Society of America in St. Charles, Illinois. At that time, she had not been diagnosed with autism. She packed her family up in the car and drove them across the country to attend the meeting and instantly felt a rapport with the other attendees she met there. She recalled how the message delivered by autism advocate, Dr. Stephen Shore, resonated with her. He said, “If you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum,” implying that there is no one-size-fits-all approach to living with or treating autism.
After the meeting, Karen began looking for ways to engage in the autism community on a more regular basis. In 2010, she began a blog about her experiences called, “Aspierations ‒ Come as You Are…Let Your Light Shine.” However, she still wanted to spread to a broader audience the message that individuals and families living with autism have the right to define themselves rather than succumb to the labels and stereotypes others may affix to them. The founding of Autism Empowerment in 2011 provided Karen with a conduit for encouraging this message. The organization promotes the need to respect the differences of autistic individuals across the spectrum and all ages through four foundational pillars to accept, enrich, inspire, and empower individuals with autism and their families. Autism Empowerment teaches the value of neurodiversity and encourages conversations between families impacted by autism and educators, clinicians, scientists, and other professionals to work toward the benefit of all. Over the past 5 and a half years of working with Autism Empowerment, Karen has witnessed a change in the tone of the autism community and advocacy organizations, driving toward a more universal message of acceptance of autistic individuals of all abilities.
She noted that, although autism is a part of who she and her children are, it is not their defining characteristic. All three of them act as advocates of this message in their own way. After years of treatment and individualized education programs, her family has made immense strides. Today, her son Ryan is 10 years old and in 5th grade. He is exuberant and enthusiastic about numbers, the weather, elephants, gaming, and computers and loves to share his fascination for math, maps, and patterns with others. He is also a Boy Scout and a volunteer for the Autism Serves Kids Care Club. Justin is 17 and a senior in high school, with plans to attend Portland State University in the coming fall. He has a great sense of humor, loves penguins, and enjoys video design. He is the executive producer of his high school’s weekly news. He is also an Eagle Scout, whose project to achieve that accolade was focused on inviting local community members to become more aware of the strengths and challenges of autism and Asperger’s through “The Great Autism Acceptance Quest.” His project has inspired and been replicated by many others throughout the country.
Karen and her family continue to face challenges associated with autism in terms of both self-perception and how others perceive them, as well as in pursuit of making the services and treatments the autism community needs more widely available. Through their advocacy and daily lives, Karen and her family members are creating their own definitions of what it means to be an individual with autism and are helping others outside the autism community understand that autism is not their defining characteristic. Mother, wife, daughter, dreamer, aspie, autistic, entrepreneur, author, editor, advocate, and woman of faith. These words all describe Karen, but the power of her personality and the inspiration she provides to the autism community, her family, and the world at large remain undefinable.
Last updated Wednesday, April 5, 2017