A Distinct Diagnosis for Profound Autism

Profoundly autistic children, like my 7-year-old nonverbal daughter, often fall through the cracks of the unified autism spectrum, requiring 24/7 care due to their intellectual disability and minimal verbal ability. While some autism advocates voice concerns about the potential challenges and ableism associated with subtypes, others, including the Lancet commission, argue for a distinct diagnostic category to clarify the vastly different educational and long-term care needs of this population. The proposed term "profound autism" would help guide service allocation and research, allowing families to push for the attention and funding their children deserve.

Key Takeaways:

• The Lancet commission proposed the term "profound autism" for individuals requiring round-the-clock care, with IQs below 50 or minimal verbal ability or both, to guide service allocation and research.
• Only about 6 percent of autism research subjects have intellectual disability, a common feature of severe autism, highlighting the need for more research in this area.
• The needs of different people with autism vary so widely that the unified spectrum umbrella makes coherent conversations about research, causes, and policy nearly impossible.
• My daughter is classified as Level 3 for "high support needs" in the diagnostic guidelines, but some experts find this terminology too euphemistic and unfamiliar to the average American for it to be useful.
• Some disability activists with autism and low support needs have argued against adult guardianship, claiming it violates autonomy, but this stance feels out of touch to parents like me who live with the grim statistics on autistic children lost to traffic accidents or drowning.
• Advocacy groups opposing programs that allow employers to pay some workers with disabilities below minimum wage may be neglecting the importance of these programs for building confidence and skills in a subset of the disabled population.
• Recognizing profound autism as a distinct diagnosis would not take away from those who can advocate for themselves, but provide a much-needed spotlight on the stigmatized and invisible experiences of my daughter and many others like her.

Statistics:

• 6% of autism research subjects have intellectual disability, a common feature of severe autism (Source: [1]).
• Approximately 1 in 54 children in the United States has autism spectrum disorder (Source: [2]).
• The proposed term "profound autism" would identify around 25% of people with autism, who require round-the-clock care due to their intellectual disability or minimal verbal ability (Source: [1]).

Sources:

• [1] Lancet commission report on the future of autism research and care (2021)
• [2] Centers for Disease Control and Prevention: Data & Statistics on Autism Spectrum Disorder (2022)