One of the questions that I am asked most frequently is about my son Matthew’s two younger brothers Andy and John.
“How has had a sibling with autism affected them?”
Read Andy’s reply HERE.
In the next few weeks, I’ll be sharing the perspectives of other “Spectrum Siblings”. I was particularly touched by a story written by Lena Rivkin that I first read in the Autism Speaks blog:
Phillip is my older brother.
Usually an older sibling looks after younger ones, but all my life I have cared for my brother, who has lived away from home since he was six years old.
Phillip is severely autistic. He is able to dress himself and enjoys looking good. He is unfailingly kind, endearing and loves to be helpful and busy.
But people with autism face real challenges in the areas of communication and social skills-and Phillip is no exception. He doesn’t speak. He understands when you talk to him about subjects with which he is familiar-although his responses can seem disconnected at times.
He communicates through a limited knowledge of sign language and sometimes uses a book of symbols, pointing to images that express his feelings and needs.
Like others who suffer with autism, Phillip has Obsessive Compulsive Disorder (OCD). When, many years ago, he was given the job of marking off the current day on the school’s calendar, it became a necessary daily ritual which he carried out even if he interrupted meetings taking place. Realizing that marking calendars was one of Phillip’s obsessive needs, I gave him several pocket calendars so he can now mark off each day with focused intensity.
An inspired educator once introduced Phillip to needlepoint. In the 21st century, needlepoint, a form of canvas stitchery, is often regarded as a tedious craft with anachronistic overtones. This is not surprising, considering that it goes back to the small, slanted stitches of Egyptian tent-makers thousands of years ago.
Since Phillip is meticulous and revels in repetitive tasks, he immediately immersed himself in this craft. I am an abstract painter and we often collaborate on projects. In fact, our creative collaboration provides a very special connection between our worlds: I design-creating colorful images on a needlepoint canvas-and Phillip stitches in a cornucopia of colors.
Needlepoint gives him a sense of security in and control over his limited universe. He feels empowered in sharing his latest creations and, like all artists, he is very proud of them. I would like to think his efforts would have made famed Bauhaus teachers and color theorists, Johannes Itten and Joseph Albers, proud as well!
Another window into Phillip’s world is a method developed in Australia in 1977 called “facilitated communication.” Phillip can communicate by typing with one finger as a trained facilitator holds his wrists in a comfortable leverage position.
There is some controversy about facilitated communication. Those who support this method believe that it reveals a literacy and a previously undisclosed, higher intellectual functioning in those with autism, and that autistic people exhibit a capacity for symbolic communication.
However, critics claim that the facilitator may influence the response. To avoid this, our family would ask Phillip questions to which the facilitator did not know the answers. Since his responses were accurate, we knew that the facilitator could not be manipulating Phillip’s responses.
Although Phillip spells phonetically, what amazed us was that they were organized sentences written in a rather formal structure (e.g. “I am very fortunate to have Lena as my sister. She is my best friend.”) Perhaps most importantly, this gave us an awareness of the depth of Phillip’s understanding. We already knew, from personal observations, that he was capable of conceptual organization and were relieved that Phillip, in this small way, could finally make his voice heard in the world.
Sadly, his voice is not always heard. Many people feel uncomfortable around individuals who are mentally challenged, and I have become aware that families who struggle with the challenge of disabilities face social isolation. People may perfunctorily inquire about Phillip but then quickly move on to another subject; very few go beyond polite questions to discover that Phillip is a person with strengths and weaknesses that extend beyond the label of autism.
Still, there are friends, who not only acknowledge Phillip but respect him and take note of his interests. They often send him cards, yarn and calendars-gestures of thoughtfulness that deeply move me.
Phillip is unaware of the great influence he has exerted on my own life. Through helping him develop skills and observing his creative process, I have developed patience, endurance and a depth of compassion I never knew I possessed as well as an acceptance of both the limitations and vast possibilities inherent in each of us. All of these qualities play such an important role in my personal and professional relationships.
And while I sometimes wish I could look inside his brain to understand the complexity of his world, I think of Phillip, my little older brother, as my personal gift. But like Phillip, I can’t put what he means to me into words.