As the number of people diagnosed with autism spectrum disorders rises, chances are good that you know someone who’s affected by them. In fact, last year, the Centers for Disease Control and Prevention estimated that one in 88 children in the U.S. was diagnosed with an autism spectrum disorder.
The Public Insight Network has gathered many stories from people living with autism spectrum disorders and other developmental disabilities. Some of these stories were collected as part of our 2012 collaboration with the New York Times, which published a remarkable series of stories using insight from PIN sources.
Autism can make it difficult for individuals to develop communication and social skills, which includes reading body language and other non-verbal cues. And while building connections — both romantic and platonic — can be a challenge, we’ve heard from a number of people who have built thriving relationships amid their diagnoses on the autism spectrum.
Some of the most touching stories we heard from the many who shared with us touched on that idea — the way they navigated the relationships in their lives, through the lens of their experience with the autism spectrum.
Jeremy Sicile-Kira of San Diego wrote a book with his mom, Chantal Sicile-Kira, called “A Full Life with Autism” in order to help guide other people with autism spectrum disorders to lead independent lives. As an example, Jeremy explained to us how his autism makes it difficult to find a girlfriend.
“I greatly want girlfriends. Like my kind mom says, I need patience and the real advice from a knowledgeable person. Like, how do you find the woman of your dreams? How do you make love to someone?
“I had a dream last night that nicely gave me an idea on how to meet someone. I went to the café that Dana’s boyfriend owns and often saw the same girl, and got her to type with me. She liked my sense of humor and did not care I had autism. My nice mom asked her to go to the movies with us.
“I liked that the girl understood I needed help. Mom was just kind of there to support me. Nicely, I need more helpers. The dream was real because I need to believe I can have the relationship I want but still have supports.
“Being disabled is not easy but not the end, either. You very much need to have parents who will guide you. Nicely, my mom is not afraid to find good people to help me. It’s important to have the nerve to be greatly OK with failing before having success.
“I think my mom has to get me a very nice girlfriend before I lose interest in the idea that I can have one. My mom likes to help me the best she can, just by thinking realistically. Like she has told me, ‘Girlfriends are not something I can get for you at Costco.’ A sense of humor is necessary when you are a guy like me. Greatly, I wear my mom down.”
Maurie Traylor, who does not have an autism spectrum disorder, is from Tulsa, Okla. Her partner, John, has been diagnosed with Asperger’s syndrome. For her, being in a committed relationship with someone who’s been diagnosed with an autism spectrum disorder is largely a matter of understanding.
“The most difficult aspect of being in a relationship with someone with Asperger’s is that you must learn that they are constantly on sensory overload and that they must have time to themselves.
“For this reason, we do not believe or discuss marriage or even living together and that suits both of us well. John needs time to completely ‘shut down’ and when he gets over tired he becomes difficult, argumentative and sometimes even rude. He does not mean to be this way.
“In the early stages of our relationship I often took this personally and wondered, ‘What is wrong with me?’ But it is often that John must have time to just process his day and his work, and he often has to do that without anyone around.
“Being in a relationship with John helps me tap into my own strength. And I have had to learn to really ask for what I need in the relationship in a respectful way. I think this is a good trait that all couples can learn to do better. We have to do it day to day.
“Once, I had my car broken into and had to take care of many details. The fact that I could have been hurt — and that my property was hurt — was devastating to John. I knew that, but his expression and responses were very ‘logical’ and very ‘data’ oriented.
“When I finally did get the insurance things handled, I told John that everything was OK and that we can replace the damage. I asked him if he was OK and he said, ‘Yes, but I’m very angry that this happened.’ And then he asked me if I wes OK. I said, ‘Yes, I am but I can really use a hug,’ and John was able to give that.
“These are the kind of cues that people with Asperger’s miss because their minds are focusing on the other million details and facts about an incident … and the emotional aspects are not a priority.”
John Stegall of Shafter, Calif., has been diagnosed with an autism spectrum disorder. He discussed the difficulty and thought it takes for him to create romantic relationships.
“Typically I have limited understanding regarding the specific manner of forming a personal relationship with a woman. For instance, I have no formal instructions about how to form and make a personal relationship with a woman and how to know when such a relationship seems to be possible. In my way of thinking, if I have no instructions in a classroom setting at school, then such information is not imputed.
“My particular dilemma with forming romantic relationships has two parts to it. For one, I have the utmost respect for women, especially when they are in college and going different directions in their lives.
“From my point of view, I would not wish to interfere with my fellow female classmates who have futures already planned out, including graduate school in areas outside of Kern County. So I have learned to get to know my female classmates before I have made up my mind if a particular woman seems to have similar interests and values as I do.
“My second part to my dilemma is experience from previous relationships that I must take into account. For example, my last relationship was with my close friend, but, without going into details, we differ on our future goals in life and values. So we agreed to end our romantic relationship and remain in close contact.
“Overall, I am gradually learning what makes a personal/romantic relationship, but the problem lies in my conscious decisions toward a particular woman’s values, personality, religious beliefs, education, cultural relativity toward other people and respect toward people who have disabilities such as autism.”
>> What’s your story? Tell us your experience of romance alongside disability.