Commentary by a 40-year veteran providing autism and special needs services.
Profound derives from terms meaning deep knowledge and understanding.
By Karen Kaplan
I have been passionate and committed to helping families with individuals on the autism spectrum since 1972. I have sat in conference halls, libraries, meetings, seminars, and workshops listening and processing and expanding my knowledge in the area of learning differences. I have founded and directed schools for those on the autism spectrum and dealt with licensing agencies, laws, rules, and policies that directly affect those special need individuals. And today I still wonder why so many in the field have been unable to find ways to work in positive collaborations and continue to be angry and build walls.
I have seen new state and federal acts created to encourage inclusion and education for all. But then, I have also seen state policies that restrict, confine, and limit choices. How can positive solutions be resolved without choice?
I have seen definitions change, only to create a set of expectations that may not link to supports needed. I have seen narrow definitions of inclusion reduce options and opportunities (villages, group homes, communities not funded) for those who would choose to be with like tribes.
Would it be amazing if this new adjective, profound, could help those left behind in the embrace of neurodiversity, and accept that there are those who have these qualities and these intensive needs?
The word profound comes from old English and French terms meaning great insight and deep knowledge. It would be profound if we all took a deep dive, establish the quality of profound acceptance of the vast differences in the autism spectrum; a profound understanding that some may celebrate their autism, while others are more intensively affected and need our profound help and support.
I have listened to parents of profoundly involved individuals express their frustration with those who create limitations and expect all on the autism spectrum to live in typical communities and develop deep friendships with typical peers and co-workers. I have felt the deep anxiety of parents of profoundly/severely affected individuals as they search day and night for alternative living opportunities for their son or daughter who is unable to problem solve on their own or determine safety issues, yet nothing is available or what does exist only serves the mildly affected. Agencies that hold the funds will not offer realistic living options. Why is it that they know best and not the family member or individual? Why is it that funds truly do not follow the individual who can make his or her own choice or their care providers? It profoundly disturbs me.
There are fewer and fewer living opportunities for those who need lifespan support being developed. There are fewer and fewer individuals who seek to work in the field of disabilities. We have strictures, shortfalls, and constant crisis. Why is that? I think it is because we have narrowed opportunities, restricting funds to specific entities. We have profoundly restricted what can be possible. I think there are biases, restricted thinking, and a lack of profound understanding of what individuals on the spectrum truly need.
Those with severe or profound autism may have limited communication skills. They may be overwhelmed due to their limited understanding of the world around them, their overloaded sensory systems, their challenges solving problems. They may have poor daily living skills, including the hygiene arena. They may have a seizure disorder, a need alternative communication, occupational therapy support, and minimal safety awareness.
They may prefer a quieter living environment with less noise and chaos. They may choose to be more alone than with others. They may not want to get on a bus or go into large crowded areas. They may be happier with less but cannot tell you that. Shouldn’t they have a choice? Shouldn’t their family, guardians or trustees, who know them better than any agency, be able to create or choose the right living environment? Why can’t a village of comfort and safety be created for them? We typical people can choose to live in a gated community, one without children, one with those over 50 years old? We can live in a cabin in nature, apartment, home, condo, farm or retirement home. Why is it they cannot? It profoundly disturbs me that choices are limited for those who have the greatest disabilities.
Let us break down the barriers of limited choices. Let us work together to create possibilities. Profound Autism has a right to choices. Everyone on the autism spectrum has a right to choose. What are you doing to help make this possible? How can you change the current status quo?
Some Change Makers:
National Council on Severe Autism (ncsautism.org)
Autism Housing Network
Living Unlimited – Housing for the Developmentally Disabled
Sweetwater Spectrum (Sonoma, CA)
Profound Autism Alliance
Karen Kaplan has four decades of experience serving children and adults with developmental disabilities, as a speech therapist, special education teacher, and school founder and director, focusing on the autism spectrum. She has a masters degree in Speech Pathology and Audiology and is currently a writer and consultant based in California, www.karenkaplanasd.com.