Love and Autism
Navigating Love and Autism: The New York Times recently featured an article with this title by Nancy Harmon, about the blooming romance between 19-year-old Jack Robison and Kirsten Lindsmith, both students at the University of Massachusetts campus in Amherst. Robison has Asperger’s Syndrome; his father, John Elder Robison, has written about his own experience living with Asperger’s Syndrome in a memoir, Look Me In the Eye. In the course of her relationship with Jack Robison, Lindsmith, who had been diagnosed with ADHD as an 11-year-old, realized that she was also on the autism spectrum and, after testing, was also diagnosed with Asperger’s Syndrome.
Harmon’s article describes the ups and downs of Robison’s and Lindsmith’s relationship, noting how both having Asperger’s Syndrome — characterized by difficulties with social interactions, reading social cues, communication and sensory sensitivities, while having normal intelligence — potentially adds an extra layer of challenges. As Harmon writes,
Only since the mid-1990s have a group of socially impaired young people with otherwise normal intelligence and language development been recognized as the neurological cousins of nonverbal autistic children. Because they have a hard time grasping what another is feeling — a trait sometimes described as “mindblindness” — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships. Parents and teachers have focused instead on helping them with school, friendship and, more recently, the workplace.
Yet as they reach adulthood, the overarching quest of many in this first generation to be identified with Asperger syndrome is the same as many of their nonautistic peers: to find someone to love who will love them back.
Love and autism are two subjects I return to often in my own writing about autism. Our teenage son Charlie has a diagnosis of autism and I write frequently, here and on my blog, We Go With Him, about our daily life. Charlie is my husband Jim’s and my only child and our days completely rotate around him. Charlie has many struggles, in large part due to his very limited verbal communication ability; sometimes his not being able to explain that he has a pounding headache or a pain in his stomach, that he feels out of sorts because his usual routine of 5 days of school and 2 days off has been disrupted due to the holidays, is expressed via “behavior storms.” It may be in the midst of some of these moments of extreme difficulty that we feel our love for Charlie the strongest.
Harmon’s article is about “love of the Valentine’s Day” sort. Given Charlie’s neurological issues, an intimate relationship such as Robison’s and Lindsmith’s would be even more challenging. I think it’s important to underscore that saying such is not to say that Charlie would not wish for such a relationship or have such feelings. Until quite recently, being autistic was equated with lacking feelings due to being too withdrawn into the self and with not being able to have feelings; with being “mindblind” to the emotions of others. Our life with Charlie has shown us precisely the opposite. While emotions are extremely difficult for Charlie to express in words, he is extremely attuned and aware of nonverbal communication, be it body language, a change in one’s tone of voice, a gesture. Indeed, because words are very challenging for him, he is more sensitive to the wordless “speech” we all unconsciously use.
Indeed, life with Charlie has taught my husband and me — both of us humanities professors, who love talking and conversing and writing — that sometimes you can say and do the most by not saying anything at all.
The love of parents and relatives, of teachers and therapists and those who support someone with the immense neurological and cognitive challenges of Charlie and many others, is of a different sort than that discussed in Navigating Love and Autism. But there is no question of the depth of love many of us who live and care for someone on the autism spectrum feel, and the depth of love given back and expressed by Charlie to a small but solid community of family members and former and present teachers and therapists. As we seek to help Charlie navigate through the complexities of life in this world, teaching and guiding him to regulate his emotions and manage personal interactions and feelings with people, in relationships of whatever sort, will always be something we lovingly embrace.
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Photo by Alex Grant (alextakesphotos)