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Tuesday, August 8, 2023

Not "Either-Or"

In The Politics of Autism, I discuss divisions and factions within the autism community.

To the extent that the stakeholders form a “community,” it is a quarrelsome one. James Madison identified the causes of faction, including a zeal for different ideas and interests.  In autism politics, the factional disagreements are diverse and deep.    Emotions run high because the stakes are high. Few things are more frightening to parents than not knowing whether a child will ever be able to live independently, indeed to survive without them.  For people with autism, the issue involves their very identity.  

Is there hope for a truce? Hari Srinivasan at Newsweek:

The heterogeneity of autism calls for a multifaceted approach that combines strengths-based opportunities and challenges-based solutions unique to each individual.

Strengths-based opportunities are what the disability rights movement has always advocated and include education, technology, communication support, and accommodations, which have empowered individuals like myself. Such an approach allowed me access to a college education at prestigious institutes like Berkeley and Vanderbilt.

Challenge-based solutions involve researching physiology, brain biology, gene-environment interactions, biomarkers, precision medicine, sensorimotor supports, and developing long-term supports, treatments, and technologies. Such care also needs to be part of routine care and delivered in mainstream settings for autistics that need these solutions. Neglecting these challenges leads to marginalization and impedes true inclusion and belonging.

Scientists now believe that underlying autoimmune and inflammatory processes may be more common than thought earlier. Perhaps some of our issues are just a simple physiological solution away, which can mean a huge improvement in our quality of life.

To drive true progress and improve the quality of life of all autistics, we must recognize a dual based approach. It does not have to be either-or.