Profound Autism: Understanding a New Category for Care

Glynnis Olin, Office Administrator & Blog Writer 

Our understanding of the human mind is ever evolving. Last December, The Lancet Commission on the future of care and clinical research in autism published research that found that somewhere between 18 to 48% of the 78 million people with autism today are estimated to fall under a new, distinct category: “profound autism.” Profound autism, which is on the more severe end of the broad and complex ASD spectrum, is classified by exceptionally high dependency. Most people with profound autism – a classification that is reserved for people ages eight and up – require 24/7 care and are minimally or non-verbal. As a result, people with profound autism are often unable to advocate for themselves. And as our understanding of their needs continues to evolve, so must our methods for providing them the best possible care and support. 

This new classification further clarifies what we already know – that there is not one single type of autism, nor are there universal treatments and supports that apply to all autistic children. From elementary school through high school, children with profound autism will likely always require a designated caregiver, whether in the classroom or at home. But many of the predominant methods for teaching and caring for children on the ASD spectrum work from the outdated assumption that all autistic children have the same needs. One common way to accommodate children with autism who struggle with writing by hand is by allowing students to record spoken answers or dictate to a scribe, but that modification would only increase the frustrations of a child who cannot communicate verbally. Children with profound autism have higher and more specialized needs, and they deserve the education and care infrastructure that best supports them – such as AT devices that incorporate a keyboard of letters, words, or other visual symbols to aid communication. 

Now, it is understandable that existing models for care may be outdated – after all, most of them are guided by research that was conducted years ago. But as new science emerges, we must update and reconfigure our approaches, actions, and institutions in real time. We are finally beginning to better understand the challenges that have always existed for children with profound autism – and today, we have the resources and tools at our disposal to help these children thrive at home and in the classroom. As we continue to update best practices, we must be ready to include the perspectives of autistic people and provide them with the services they require to get the education they deserve. For profound autism in particular, careful clinical trials are crucial. We have a way to go in discovering how to provide 24/7 care most effectively to these children – whether with a classroom para, home health aide, and/or parent training. But, as with the ASD spectrum more broadly, profound autism is not one-size-fits-all when it comes to treatment and support. Severity and unique personality traits will need to be carefully assessed by a neuropsychologist for every child, to figure out the most appropriate way to provide round-the-clock care.

The Lancet Commission supports what is known as “stepped care”: initially providing services that come at the lowest cost to the family, and then adding more intensive treatments and support as needed. For most families, adding those intensive services that many profoundly autistic children require – such as a specialized private school or an ABA provider with focused expertise in non-verbal communication – is not financially feasible. That’s where we come in.

At the Law Office of Michelle Siegel, we are here to help voice the needs that your non-verbal child cannot express on their own. We will fight for your child’s right to the consistent one-on-one support they may need to succeed. And while more research is required to identify the best methods of care for children with profound autism in education, our firm will always be ready to advocate for the most cutting-edge scientifically backed treatments and services.

Please stay tuned for an update on the next big steps our firm will be taking to support families of children with special needs!

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