My Brother Stevie: Lessons Learned from a Life in Autism
My brother Steve (“Stevie”), who died a couple of years ago, had a lasting impact on my life.
Stevie was born just as I was turning 13, having my Bar Mitzvah, and thereby “becoming a man.” He “arrived” on this earth as a beautiful infant with bright red hair (like his siblings), and an innocent sweetness about him. I know this sounds ridiculous as one could say that about most infants, but it may have had a special meaning for us.
I say this because within a few short weeks of life, his beauty and sweetness began to be overshadowed by what seemed to us to be an uncomfortable struggle within himself even when lying in his crib.
We expressed these concerns to our pediatrician, but he said this was due to his “eye problems.” Stevie did have some nystagmus (‘cross-eyes’) and he stared blankly, not responding to faces/people or toys/objects situated right in front to him. We were referred to an ophthalmologist who reassured my mother (and me, see below) by saying that “Stevie will be fine” after corrective surgery, to be performed in a few months. That surgery did correct the nystagmus, and corrective lenses lessened his vision problems but they persisted throughout his life.
The basic issues, however, weren’t “eye problems.”
We were more concerned that he didn’t “mold” his body or “nestle in” when he was being held by any of us. He appeared to “resist” being closely cuddled.
Feeding him was also frequently a challenge, as milk and infant food were spat out, and he seemed unhappy and would cry. “He’s just colicky, wait, you’ll see,” we were told. We waited, and didn’t see…
When a few of his early developmental milestones (like turning over, sitting up, interacting) were delayed we again expressed concerns, another physician told us, “He’ll grow out of this phase.” He didn’t…
In addition to the challenges with Stevie, there were resultant problems at home. My mother was experiencing a significant postpartum depression during the first few months of Stevie’s life, and my immigrant father from a shtetl (village) in Lithuania, fwas working two upholstery jobs to barely make ends meet. He was emotionally stunned by his wife’s depression and his infant son’s unexpected severe challenges. I remember him exclaiming, “This was supposed to be a happy time for us!”
So it fell to me at 14 or so to accompany my mother to doctors and clinics to ascertain just what was going on with Stevie. He wasn’t progressing in his use of language, coordination and other skills, and he displayed behavioral rituals and automatic repetitive movements like rocking and hand flapping.
The professionals were empathic, well-meaning and clearly baffled, and our family felt powerless and isolated.
The mysterious ailment took multiple visits and years to be elucidated. The diagnosis was finally presented to us quite formally, I recall, in a classroom by an eminent child psychiatrist who was surrounded by a group of colleagues and students. He told us that Stevie had “a significant degree of mental retardation” (the old term), but more importantly, he said, he was suffering from “early infantile autism.” This particular diagnosis had just recently been delineated and named by Dr. Leo Kanner at Johns Hopkins University. It came with an unfortunately assumed cause attributed to “unfeeling” (“refrigerator”) mothers, a long-since disproven theory. As you might expect, the “accused” mothers, already feeling guilt-ridden at that time, were shattered, Stevie’s included.
Stevie remained at home while attending some make-shift classes at Children’s Hospital, and was given mild tranquilizers. For a few years he was mild tempered and comfortable, but although his early behavioral difficulties had subsided, he was falling further behind cognitively, physically and emotionally.
As he neared the age of puberty, however, he became increasingly hard to manage. His rising testosterone levels made him frustrated and confused, which contributed to tantrums and even self-destructive behaviors, like head-banging, slapping and biting himself.
He was then admitted to a residential group home, which raised our hopes for his progress, but in truth it also provided a much-needed respite for my mother (especially) and the family at home. Stevie remained in the group home for two years, but as there was no real clinical or educational program there, there was also no significant progress in Stevie’s condition.
For a significant period of time these pressures impinging on the family took a toll on my parents’ moods and relationship, and the tension and melancholy were palpable at home.
Interestingly, my mother had become a strong and articulate spokesperson on behalf of other overwhelmed parents of similarly afflicted children. In trying to improve understanding of the disorder, she pushed for services and research for this population, and organized other parents in similar circumstances. She became a successful activist who was instrumental in getting a dedicated agency established, and she mobilized doctors and donors to contribute services and funds for research efforts. Ironically, in this time of tribulation and ferment, she felt more motivated, energized and fulfilled in her own life.
My father felt bewildered and saddened during Stevie’s first couple of years, a far cry from his previous warm and loving nature. Gradually, however, he regained his emotional footing and joie de vivre.
Stevie was transferred to a regional hospital which was run by a Catholic religious order of nuns, in partnership with a medical school investigative unit, where he remained for about a decade. He actually made some cognitive and behavioral progress there, worked in the vegetable gardens, ran an elevator and helped in the kitchen. He became a favorite of the medical and nursing staff, especially by many of the nuns who worked there.
This was followed by two long stays in a couple of progressive community-based group homes for adults in the community. In both of these residences, we were impressed by the warmth and generosity of the staff who seemed to be genuinely drawn to this “man-child.”
Stevie “evolved” as an adult to that beloved sweet boy he was as a young child. He was still limited cognitively and socially, and still ritualistic, but he was warm and kind, and most important, seemed to be happy.
Stevie passed away three years ago at the age of 65. When he died the physicians were hard pressed to come up with a definitive diagnosis as causing his death. “His heart just gave out,” is what the family doctor attending to the group home said.
Attending his moving funeral were friends and family members, of course, and there were also many caretakers and attendants, nuns and medical/nursing staff members, and others from his various institutional residences.
What are some salient lessons I learned from the life of Stevie?
It was largely because of my experiences with Stevie that I became a psychiatrist with special training in Child and Adolescent Psychiatry. Similarly, my sister became a master teacher-counsellor for children with special needs.
With all his limitations and challenges, Stevie was appreciated as a worthy being, loved by many people in his family and by the staff members in every therapeutic setting he spent time in throughout his life.
The diagnosis has now evolved to be a variant of “Autistic Spectrum Disorder,” with many research efforts around the world attempting to elucidate the underlying causes, as well as effective therapeutic and educational approaches for this enigmatic condition. We still have a long way to go, but there is now a groundswell of commitment to studies and services for the children and their families.
Parents of these children still feel frightened and powerless, sometimes overwhelmed by the absence of “answers” to tough questions having to do with the causes, effective interventions and prognosis for their children.
When Stevie was young there were virtually no supportive services for the parents and family members of the children with this disorder. The situation is somewhat better today, especially insofar as the need is recognized, but parents of these children still often feel bereft and alone.
Parental activism can serve as a meaningful source of gratification and fulfillment. Not only is it rewarding to the individual, but having like-minded peers, people facing the same obstacles and fears, is communally comforting and personally enhancing.
My own life was profoundly enriched and ennobled by Stevie.