World Autism Awareness Month: Changing Lives One Person at a Time
When I first learned about autism in 1999, my college textbook gave me exactly two paragraphs about a “disorder” that was estimated to be as prevalent as 1 in every 1000 individuals in the US. Today autism is considered as prevalent as 1 in every 37 individuals. The literature on this subject could fill a whole library. If you think there’s any way to be part of a field like Psychology and presume that what you practice and believe today will still be correct, or even acceptable, in 20 (make that 10) years, you are in for a rough look back on your life.
I grew up blocks away from the Weston State Mental Hospital — a place where unspeakable things occurred in the name of science, medicine, psychology and yes, care. The institution planted a seed of curiosity about the field of psychology for me, and today the empty architectural relic remains a constant reminder of cultural and professional humility. I don’t claim that I have gotten any of these sentiments consistently correct, but as a recovering Christian, I extrapolate the idea to always come back and try for such virtues, even in the face of human missteps. Like those professionals at the Weston hospital, and certainly those that came before me in the fields of psychology and behavior analysis, I came to do good. My work drives me to help people. And I do so with the full benefit of learning from the successes, and even more so the failures, of my predecessors.
A couple of years ago there was a debate around the designation of April as Autism ‘Awareness’ Month and its associated campaigns. As a result, the month was rebranded as Autism ‘Acceptance’ Month. I am happy to use either moniker; it brings a new perspective to an older paradigm and an opportunity to re-examine everyone’s attitudes surrounding a diagnosis.
The extension of that debate revolved around the history of Autism Speaks and its flagship campaign to #LightItUpBlue for awareness. Critics of these institutions object to a “cure” paradigm or view autism as a “problem” to be “solved” (the symbolism of the puzzle piece has been heavily denounced here). Some groups have suggested #RedInstead as an alternative to the associated “blue” narrative perceived by critics as detrimental to those on the spectrum.
At the same time, there is a very useful and needed discussion around the concept of #Neurodiversity and an always-broadening understanding that there is a wide range of needs, strengths, talents, and voices in the autism community, and beyond.
The old adage goes — “If you’ve met one person with autism… well, you’ve met ONE person with autism.” Even within this vernacular, we find a stumbling block of conversation: Person-first or identity-first language? Time has watched the pendulum of language swing to and for on this issue alone. Should one say, “autistic person,” or “person with autism?” I would suggest that society adopt a practice similar to what has developed around personal pronouns (now widely acknowledged, including in Merriam’s Dictionary as correct per the inclusion of “they” as a personal pronoun) — and ask each individual their personal preference as a nod of individual respect. (Side note: recent findings about gender expression in the autistic community indicate that our quest for understanding will continue to evolve). To this point — for one group to portend to understand the preference for any family or person- whether to wear blue or red, or which group to seek help, guidance, or affirmation from- is a binary attitude. And binaries are not relevant on a spectrum.
It should go without saying that were it not for the foundational work of Autism Speaks in the past 20 years, insurance coverage for desired treatment options in America would not be covered in all 50 states today. Were it not for a campaign for ‘awareness’, many people would not have found their way to a community of their choosing. And partly because of that work many individuals have a platform to speak about their own experiences — good and bad. We should all hold space to grow with new information. In that spirit, we must strive to make the best decisions we can with the information we have at that time. It is our job societally and professionally to listen to those voices now while continuing to rely on data to understand effectiveness-and lack thereof-in current practices. That will mean accepting shortfalls and wrongs. But it will mean improving if we can hear.
I will concentrate my work on improving Quality of Life for people and families. I will begin by asking about their goals and needs. I will not superimpose my values on theirs. I will try to help.
I will be wrong about a lot of things. I already have been. But I will continue to grow. And I look forward to accepting awareness to that end.
Do you have a similar pledge or commitment? What are some of the things that you all have done to improve quality of life for the people you’ve worked with?
Amanda (“Mandy”) Ralston (she/her) has been certified as a behavior analyst since 2002, first as a BCaBA, and then as a BCBA. During her career she has founded two companies that provided applied behavior analysis services to hundreds of families, schools, and individuals with autism or other developmental or intellectual disabilities. She has ushered dozens of aspirational behavior analysts into the field as a mycorrhizal influencer, in pursuit of greater impact of change for constituents. Mandy has served as a Subject Matter Expert to a number of international workgroups and panels related to Behavior Analysis, Ethics, and Practice. And is happy to engage in copious amounts of verbal behavior about verbal behavior, and all resulting relational frames. She continues to mad-happily create unique solutions by synthesizing her own history of reinforcement and punishment with evidence-based practices, Clinical and Business Intelligence, and Technology in an effort to further support clinicians, funders, businesses, and founders in changing the world for QoL, Outcomes, neuro/diversity, equity, and inclusion. An early proselytizer of Verbal Behavior, Ralston uses her considerable imitation repertoire and joint control to engage in behavior resulting in a wide variety of reinforcement.*. Her behavior continues to be shaped by its impact on a world where autism exists, and the field of behavior analysis.