To the Interagency Autism Coordinating Committee,
My name is Shawn Blymiller. I am the founder and Executive Director of Pure Living Family Foundation, a federally recognized 501(c)(3) nonprofit supporting parents of children with autism, PANDAS/PANS, and other chronic illnesses. I am also the father of an 11-year-old nonspeaking boy with autism named Theo, and I delivered public testimony before the IACC in April 2026.
I am submitting this comment in response to the 2026-2028 IACC Strategic Plan Working Draft. I want to begin by expressing genuine appreciation for the depth, ambition, and clarity of this document. After years of advocacy in this space, it is meaningful to see a strategic plan that reflects the complexity of what our families are actually living. I offer the following six observations and recommendations.
- THE ACCOUNTABILITY FRAMEWORK IS A SIGNIFICANT STEP FORWARD
With trust in government institutions at an all time low. The verifiable accountability structures built into this draft document represent meaningful progress. The inclusion of measurable benchmarks and accountability language signals that this committee is serious about measurable outcomes, not just intention. I strongly encourage the committee to preserve and strengthen this framework in the final plan. Families who have waited years for action need to know that federal commitments come with teeth and that our cries for help don't go unheard.
2. THE FOCUS ON PROFOUND AUTISM IS OVERDUE AND NECESSARY
I am deeply encouraged by the draft's attention to individuals with profound autism who have been chronically underrepresented in both research design and service development. My son Theo is nonspeaking. He has been excluded from the majority of autism studies because he does not fit the participant profiles researchers find easiest to work with. The result is a research base that reflects the experiences of a narrow slice of the autism population while the families carrying the heaviest burdens receive the least support and guidance. The committee's commitment to designing research and support systems that include nonspeaking and profoundly autistic individuals is not just welcome. It is a lifeline.
3. AUTISM.GOV AND THE NATIONAL AUTISM PRECISION MEDICINE INITIATIVE GIVE FAMILIES REAL HOPE
The proposal to build a navigable government support infrastructure through autism.gov and the National Autism Precision Medicine Initiative represents the kind of systemic thinking that families have desperately needed. Parents of autistic children spend hundreds of hours navigating fragmented, inconsistent, and contradictory systems. A centralized, precision-medicine-informed resource that reflects the biological heterogeneity of autism rather than treating it as a single condition is exactly the infrastructure this community needs. I encourage the committee to ensure that autism.gov development includes meaningful input from families with lived experience, particularly those navigating the most complex presentations.
4. CAREGIVER MENTAL HEALTH AND RESPITE SERVICES MUST BE TREATED AS CORE INFRASTRUCTURE
I am grateful that this draft gives explicit attention to the mental health and wellbeing of the caregiver. This is the work Pure Living Family Foundation was built to do. Research consistently shows that parents of children with autism experience significantly elevated rates of depression, anxiety, burnout, and social isolation. The call for expanded respite services and greater mental health resources for caregivers is not a peripheral concern. It is foundational. A caregiver who is depleted cannot advocate effectively, cannot navigate complex systems, and cannot provide the consistent, high-quality support their child needs. Caregiver wellness is autism policy. I thank the committee for including this initiative and invite the committee to work with community-based caregiver organizations like PLF as formal partners in the delivery of these services. Seeking wellness is best done in the community. (Read- Daniel Plan: 40 Days to a Healthier Life) People are more likely to eat healthier and exercise if they are part of a community encouraging each other to do so.
5. IDEA MUST FUND SPELLING TO COMMUNICATE AND RAPID PROMPTING METHOD IN SCHOOLS NOW
This is the area where I feel the greatest urgency and where I ask the committee to move with the most speed.
My son is non speaking. He is entering the pubescent stage where hormones kick in and he has become more aggressive. Theo has a mind, thoughts, feelings, and things to say. We need to access him Now! However, I don't have the income and the means to pay $200/day for this type of education. The Individuals with Disabilities Education Act should be funding Spelling to Communicate and Rapid Prompting Method as recognized, reimbursable augmentative communication methods in schools across the country and it should be doing so now. The current clinical standards governing which communication methods receive recognition and school-based funding are leaving non speaking autistic individuals without access to their own voice. This is not a research question. It is a civil rights and justice question.
I ask the committee to use this strategic plan to make an unambiguous call for IDEA to fund S2C and RPM as legitimate communication methods in every school district in the United States. Every year we wait is another year a non speaking child sits in a classroom with things to say and no recognized way to say them. Not being able to communicate is causing harm to our kids and to the families who support them.
6. WELLNESS COACHES AND FUNCTIONAL MEDICINE PRACTITIONERS MUST BE RECOGNIZED AS PART OF THE SOLUTION TO THE PROVIDER SHORTAGE
The draft correctly identifies the severe shortage of qualified providers serving the autism community. I want to offer a concrete and underutilized solution: certified wellness coaches and functional medicine practitioners are already filling this gap in communities across the country and they are doing so without federal recognition, reimbursement, or support.
I am a certified Functional Medicine Coach. The National Board of Health and Wellness Certification is training new providers every year. Across the country, trained wellness coaches are serving as the frontline resource for families who cannot access psychiatrists, developmental pediatricians, or behavioral health specialists because there are not enough of them and the waitlists are measured in years.
The committee should explore pathways through which certified wellness coaches operating within a functional medicine framework can be formally recognized as part of the autism services continuum, reimbursed through appropriate funding streams, and integrated into the care navigation infrastructure that autism.gov and the Precision Medicine Initiative are designed to support.
Thank you for the work reflected in this draft and for the opportunity to respond. Pure Living Family Foundation remains committed to being a constructive and long-term partner to this committee in the work of improving outcomes for autistic individuals and the families who love them.
Respectfully submitted,
Shawn Blymiller
Founder and Executive Director, Pure Living Family Foundation
purelivingfamily@gmail.com
801-200-2400
purelivingfamily.com
501(c)(3) Nonprofit — EIN 88-1015327
Sandy, Utah