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Reports from the world of severe autism.
Amy S.F. Lutz
The proposal for a more precise classification for those most disabled by autism reflects a growing realization that this population has been sidelined.
The plight of a severely autistic Pennsylvania boy stuck in a hospital for months highlights the consequences of closing intensive, disability-specific settings.
Focusing on size over services may threaten the safety and quality of life of our most disabled.
Recent attacks on YouTube star Mark Rober for his support of applied behavior analysis (ABA) have exposed a profound misunderstanding of this suite of technologies.
Several new memoirs illuminate a caregiving crisis. A coalition that transcends diagnoses of autism, cancer, dementia, and others could improve the situation of caregivers and care recipients alike.
Some autism and disability-rights advocates dismiss the narratives of parents and providers as "ableist." Yet these stakeholders must also be heard.
As the autism community grieves the tragic deaths of Feda Almaliti and her son, others weaponize academic discourse to target parents like her.
Proposals to scrap disability-specific classrooms and schools will only make education inaccessible for students with severe cognitive impairments.
Could your childhood exposures impact your future kids? New research suggests that general anesthesia may raise the risk of autism in the next generation.
Can bioethics provide insight into the most fraught debate dividing the autism community? A new journal article says yes.
As questions of resource allocation and rationing emerge in response to demands of COVID-19, so does a disturbing trend.
Why disability advocates should continue the historic fight to expand educational, vocational, and residential options, rather than trying to constrict them.
A myopic focus on eye contact and hand flapping ignores what's really at stake for the families of severely autistic children.
After years of inviting autistic self-advocates to meet my severely autistic son, what happened when one finally accepted?
Individuals with disabilities, their families, and providers celebrated the federal government's removal of "unnecessary barriers" to exciting new housing projects.
Severe autism represents the "neglected end" of the spectrum -- excluded from research and marginalized in policy debates. The NCSA wants to change that.
The denigration of paid caregiving relationships has contributed to a workforce that is grossly underqualified and undercompensated. Individuals like my son are paying the price.
For parents of severely autistic kids, abstractions like "dignity" are no substitute for therapeutic, educational, and medical services.
What does it say about the disorder as articulated by one of its most prominent investigators that only 5% of those diagnosed with autism have just “autism itself”?
Parents and providers need to recognize when aggression and/or self-injury is driven by biological factors that can be medically treated.
Why is the right (and responsibility) of parents to advocate for their severely autistic and intellectually disabled children being challenged by some Disability Rights advocates?
Instead of pushing ideologically-based options, why aren't policy-makers investing in evidence-based approaches to increasing happiness in the severely cognitively disabled?
Some disability advocates and policy makers want to force adults with I/DD into small, dispersed residences. But studies actually suggest size is not the determining factor.
Legislation targeting wandering behavior in the developmentally disabled is controversial, but it shouldn't be. Here's everything opponents got wrong about Kevin and Avonte's Law.
Do stories of compassion and consideration objectify the disabled? In fact, we celebrate connection between different people all the time, as we should.
Not all kids with I/DD can succeed in an academic environment. Why we need more options and less judgment.
Before we can appropriately support the severely developmentally disabled, we need to understand their impairments. Yet parents who describe them are routinely castigated.
Agreeing that adults with intellectual and developmental disabilities should have the same rights as the non-disabled is not enough. Here's what we can do to make it happen.
Our most dependent adults are also the most disenfranchised. Does this create an incentive to neglect them?
The FDA is moving to restrict access to a treatment that 100,000 Americans turn to every year to resolve devastating psychiatric illnesses – including my son. We can stop them.
Amy S.F. Lutz is the author of Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, and is the president of the EASI Foundation.
Focusing on issues affecting individuals with severe autism and their families.