FASD United recognizes that a strong and healthy FASD community is linked together with a thriving and united Autism community. Individuals with FASD often receive services and supports through Autism organizations. Among our partners in advocacy are many of these same Autism groups. In this spirit of cooperation and support, FASD United stands alongside leading Autism organizations in calling for “science-based decision-making and respectful public dialogue.”
We at FASD United share the Autism community’s concern with an effort to identify the cause of Autism and with rhetoric that refers to the condition as “preventable”, which leading Autism groups say, “is not supported by scientific consensus and perpetuate stigma.”
We bring a unique perspective on this point as the national hub on FASD, a condition with a known cause (prenatal alcohol exposure, or PAE) which for many years has been regarded as preventable. Our experience shows that focusing on preventing the cause of a condition only goes so far. We have successfully gotten the message out to much of the public that alcohol and pregnancy don’t mix, and yet the rates of PAE are increasing. The lesson learned here is that even when a cause is known, public awareness of this is not in itself the solution.
Real solutions involve balancing prevention messaging with a strong focus on supporting and empowering people in the community. Focusing solely on prevention can inadvertently cast a shadow over those living with this disability. We are inspired by the dedication of the Autism community to elevating self-advocates with living experience and we are committed to doing our part to amplify the voices of the FASD community.
While FASD is distinct and unique, there is a significant population of individuals who have both FASD and Autism and benefit from services that are FASD-informed as well as Autism-informed. Common challenges include executive functioning, social relationships, and learning. Individuals often struggle in the same systems of care, including education and the justice system.
An Autism diagnosis is typically easier to get than an FASD-related diagnosis. The reality for many people with FASD is that Autism services function as their primary support, for everything from school accommodations to therapeutic interventions. Any reduction to funding for Autism services directly impacts the lives of countless people with FASD.
The FASD and Autism communities are both stronger when we come together. We share many of the same goals: acceptance of neurodiversity, reducing stigma, expanding access to health resources, and making systems of care more person-centered and accommodating. The Social Model of Disability cuts across our differences and shows us that, in part, “disability is caused by the way society is organized rather than by a person’s impairment or difference.”
The language we use matters. Our Language and Stigma Guide reflects our commitment to see each person treated with respect and be empowered. We are moving towards more of a strengths-based approach, rather than focusing on negative characteristics or deficits. Our language should empower and be inclusive of the full spectrum and the full lifespan. FASD and Autism are both often stereotyped as childhood conditions, with not enough attention paid to adults. FASD and Autism are both spectrum conditions and we need to take great care to not talk about one part of the spectrum as being more important than another.
Both conditions are highly prevalent throughout society. While much progress has been made in expanding screening for Autism, FASD remains mostly undiagnosed. While FASD is often not apparent, it is not rare, affecting 1 in 20 Americans. While we work to raise awareness of the high prevalence of FASD, we agree with leading Autism organizations that language framing the condition as an “epidemic distorts public understanding and undermines respect.”
FASD United joins with leading Autism organizations to “urge public leaders, institutions, and media to uphold scientific integrity” and emphasize that “research must be guided by credentialed experts and inclusive of the complexity and diversity of the lived experiences.” We look forward to working together and to strengthening the many connections between the Autism community and the FASD community.