When I was little, I was kind of scared of my cousin Alex. Alex was about eight years older than me, and so physically bigger. But what made him intimidating to my childhood mind was that he did not act or talk like other kids. Alex has autism, which may be described as severe.
Though I always knew him as nonverbal, when I was young, he was more physically active. He would run through his home, clap his hands, even jump or flop onto the living room couch. Although he was never in any way aggressive, the erratic way he moved surprised me as I couldn't understand why he was different. I recall a time my mom told me, “Just be careful, he might not understand if he runs into you” or such. Yet, as I have grown, my understanding of Alex has, too. I understand more about what it means to be autistic, to have a more limited capacity for interpersonal development.
As Alex grew older, a lot of his faculties have declined. Now he spends most of his time in a specialized wheelchair and relies on a g-tube for medicine and sometimes food. From an outside perspective, because his life is very simple, his “quality of life” may be judged to be poor or low quality. Most people would probably think, “I wouldn't want to live in a wheelchair, unable to talk or feed myself.” However, the people closest to him have a radically different perspective.
Alex's parents, my aunt and uncle, love him with an amazing and awe-inspiring love. They have dedicated their lives to their son with a truly sacrificial element. From feeding to cleaning, to dressing and carrying Alex, they have to do more for their adult son than most parents of toddlers. Yet, they do not complain. They do not roll their eyes. They do not voice contempt or indignation. No, they demonstrate a radical love for Alex. They see him for what he is: a person with immense dignity. He does not have to earn that dignity or even appreciate it. His dignity is not diminished, not determined by the perceived quality of his life.
We should not perceive a person as a burden, but recognize instead that they are a subject of love and equal members of the human family.
If you were to ask them, my aunt and uncle would tell you how much they love Alex. They will talk about how he reacts and expresses joy and excitement in his own ways. They will assure you that Alex is a blessing in their lives. Both of them faithful Catholics, my uncle once said he looked forward to living eternity in heaven alongside his son.
Though undoubtedly, there is an aspect of “burden” attached to family members with autism. I think we must shift our focus to the joy found in the responsibility due to the dignity of the person. We should not perceive a person as a burden, but recognize instead that they are a subject of love and equal members of the human family.
My experience with Alex today is limited. I only see him a few times a year. Though we have never had a proper conversation, the lessons he has taught me about dignity and love have been immeasurable as they have been formative.