The term “profound autism” was introduced by Dr. Catherine Lord (UCLA’s Center for Autism Research and Treatment) in September, 2021 at the Autism Science Foundation’s “Day of Learning.”
The term is offered as a substitute for other terms such as Severe Autism and Level Three Autism. Simply put, profound autism is a condition that requires 24/7 care, support, and supervision.
We grandparents of persons with severe autism can be helpful in five basic ways. First, we can learn about profound autism. (This article is a good start.) This will enable us to better talk with and commiserate with our grandchildren’s parents and providers. Second, we can modify our homes so that our grandchildren’s visits can be as safe and enjoyable as possible. (More later in this article.) Third, we can give time for caregiving so our children can have breaks. Fourth, we can give money; every lifetime of profound autism is expensive. And fifth, we can join a support group. Such groups provide learning, networking, commiseration, and friendships.
One learning tool is the 2020 book, WE WALK: Life With Severe Autism, by Amy S.F. Lutz – mother of a profoundly autistic son. Already embraced by glowing reviews, the book’s New York Times review by Judith Newman, concluded with this: “WE WALK clears a path for us toward kindness and understanding.”
Profound autism is clearly all-encompassing for the family, and lights at the end of the tunnel are rare.
Profound autism often manifests in infancy and becomes more and more noticeable through pre-school. Symptoms can include absence of verbal communication, extreme sensitivity (crowds, lights, noises), low IQ, repetitive behaviors such as violent rocking and door slamming, moaning, sleeplessness, self-injury, hitting, biting, kicking, fecal smearing, wandering, running away, inability to self-soothe or form bonds, inappropriate responses (laughing when someone is hurt), limited eye contact, no acknowledgement of others, blank facial expression, inability to communicate hunger or pain, intense fixations, and on and on . . .
Usually a variety of professionals are needed: pediatrician, occupational therapist, speech therapist, psychologist, psychiatrist (to prescribe medications), behavioral therapist, and perhaps a music or art therapist. All of this is expensive, and often there are intense negotiations with insurance companies regarding who pays how much for what.
If our profoundly autistic grandchildren visit us, we can make our home safer by locking or removing hazardous things such as medicines, cleaning materials, knives and forks, and even glass picture frames. If our grandchildren exhibit head-banging in our home, we can put padding on those areas. And we can arrange for a safe room or space for open play – perhaps a room with such items as a yoga-type ball, a weighted blanket, and favorite toys.
Unfortunately, the long-term future for our profoundly autistic grandchildren isn’t bright – thus the need for as much therapy and love as possible as early as possible. Hospitals and jails are being used more and more as “residences” for persons with profound autism when their behaviors are too severe or dangerous for family members or other caregivers. When social services and other programs fall short, profoundly autistic teens and adults are routinely spending weeks and months restrained, sedated, and/or confined to mesh-tented beds in hospitals nationwide.
“There is no safe place for the client to go,” is a recurring lament among public agencies. There are waiting lists everywhere for programs, services, and residences – waiting lists that are growing.
While there is no cure or silver bullet for profound autism, intense therapies do help, and usually the earlier the better. And we autism grandparents can be helpful in the five ways mentioned earlier.