My son’s autism is profound — and more common than you think
During a haircut, my hairdresser of many years urged me to watch "Atypical," a Netflix comedy-drama series. The show is about Sam, a teenager on the autism spectrum who wants to start dating, and the antics of his family as they try to support him. I was sure to enjoy it, she told me, since I had a young adult son on the spectrum.
Autism, or autism spectrum disorder (ASD), includes a broad range of conditions. My son is a 24-year-old young man with limited language and life skills and difficult behaviors who needs 24/7 care and supervision. He is at the other end of the spectrum from the high-functioning type of autism represented by Netflix’s Sam. Although you might not guess based on what you see in the media, my son’s profile is not atypical. His “profound autism” is characteristic of approximately half of all people with autism.
For families like mine, shows like "Atypical" remind us of how invisible we are to the larger world. The struggle to care and advocate for our loved ones with profound autism, especially in their adult years, is not one that most people like to hear and think about. “Feel-good” stories with cute and funny autistic characters create a fantasy world in which the challenges of autism are solved with the magic wand of greater tolerance and acceptance of unusual behaviors and personalities. Maybe this is true for some who fall on the spectrum, but it is definitely not the case for many others who need lifetime support.
'Turning 22 is like falling off a cliff.'
My son, born and raised in Massachusetts, received an ASD diagnosis when he was 2 1/2 years old. In the years that followed, my husband and I navigated a dense, maze-like set of medical and educational institutions to access and coordinate care for him. The challenges were immense. And yet we always felt some degree of support, from dedicated providers and community leaders who became allies in our quest for appropriate special education services as mandated by the law.
All of this changed when my son turned 22.
“Turning 22 is like falling off a cliff.” This is how I hear the transition from youth to adult services described by fellow parents of children with profound autism whom I have come to know through the years of raising my son. We experience a drop in available services as well as public concern for our now-adult children. We feel ourselves tumbling into a dark abyss where we struggle, unseen and unsupported, to ensure they get the care they need.
Special education services for children with disabilities, provided through schools, are mandated by U.S. law. Medical providers lend their expertise to define the intensity and scope of services and legitimize them as critical to the progress of the child. For young children with an ASD diagnosis, services are a high-stakes, time-sensitive battle. Health care experts cite research to emphasize the importance of prompt diagnosis and access to early intervention and special education services for these children. The race is on, to intervene when the brain is still forming and highly malleable.
At 22, in Massachusetts, people with disabilities who need services apply to the Department of Developmental Services (DDS), which in turn contracts with agencies to deliver support. This may include employment and community-based day programs and group homes/community residences with 24/7 staffing. DDS services are not an entitlement; there is no guarantee of receiving them. Because demand outstrips availability, applicants are assessed for priority and placed in waiting lines.
For the adults with disabilities (and their families) who rely on them, the absence of services is like an earthquake ...
The problem of not enough available services for adults with developmental disabilities is not a new one. It is, however, a problem that the COVID-19 pandemic pushed to a crisis point. Citing staff shortages, employment and day programs have reduced services, refused new clients and in some cases, closed their doors entirely, leaving family caregivers to take up the slack.
For the adults with disabilities (and their families) who rely on them, the absence of services is like an earthquake, shaking and cracking the ground on which they navigate their existence. The potential aftershocks of this absence are profound: new or amplified physical and mental health challenges, regressive behaviors and the deterioration of independent living skills. These carry increased risks of costly institutionalization and hospitalization stays. The neglect of today threatens to boomerang back to us in the form of higher levels of public expenditure on care in the future.
As a mother, my fundamental hopes for my son are not so different from any other parent: a healthy, happy and fulfilling life. To realize these hopes, I need to make sure my son has the support to live safely and fully as possible in the future, even when my husband and I are no longer around to advocate for him. Listening to fellow parents in the profound autism community, I do not think I am alone in feeling frustrated and at times, hopeless.
Along with the problem of availability, the scarcity of care means families have little to no choice in the specific program or living situation to which their child is assigned. As provider agencies struggle to hire and retain qualified staff, feedback from families about the type or quality of care that is being provided is easily ignored.
In the group home where my son has been placed by DDS, he spends day after day sitting in his bedroom. For over two years, he has been on the waiting list for a day program that will engage and take him out in the community. We have seen a loss of hard-won skills and the growth of troublesome new behaviors.
From the dominance of brilliant autistics on TV to the overlooked crisis of care, adults with profound autism are largely invisible in our society, making it easier for us to overlook and neglect their needs.
Neglect, however, is not a neutral stance; it has real and enduring consequences for all of us.