I’ve written a lot about my efforts to learn body language, and the fact that doing so often left me feeling more disconnected from people, not less. The problem is that having to consciously learn non-verbal communication can make a social interaction feel more like an obstacle course than a genuine exchange.
A specific example of this issue, as it relates to autism, is eye contact. Lack of eye contact is one of the more visible traits of many autistics, and it’s something that clinicians regularly target as an area needing “improvement” with their spectrum clients.
My sense (or at least my experience) is that forcing eye contact can do more harm than good. It’s not a view that everyone shares, but a parent wrote in recently to describe her experiences with eye contact and her five year old autistic son. (I’ll refer to her as E and her son as P.)
E commented about the posts here and on other blogs that had focused on the topic of forced body language; I asked a few questions, and it developed into the following conversation (which she has kindly granted permission to post here). I wanted to share this since her story is an empowering example of what can happen when you stop insisting on artificial social milestones and start valuing autistic differences.
(If you are unfamiliar with IEPs, please visit the explanatory note below.)
Here is E’s initial comment and the conversation that followed-
E: I have to say thank you to you and to Jess at Diary of a Mom. Thanks to both of your discussions about this issue, we’ve stopped requesting eye contact and we are focused on allowing him to communicate in the way he’s most comfortable. I’ve actually had it included in his IEP/AS Supplement that no one is allowed to insist on eye contact. I’m so thankful for you and Jess.
Do you mind if I ask: were requests for eye contact making him uncomfortable or stressed at all? And when it was decided to just go with his own communication style, did that make any difference in terms of his comfort level?
E: I believe that requesting/forcing the eye contact made him anxious, uneasy and may have even caused him pain, which he was displaying by avoiding the eye contact; but also, he seemed to “crawl out of his skin,” would fidget more, etc. His discomfort became clear when I realized that during the eye contact, he would speak in shorter, less descriptive sentences and even sometimes stutter. (Yet he never stuttered at any other time.)
Since the change, there’s a decrease in his anxiety. I notice a confidence in him when he is speaking and sometimes he even has the confidence to choose to make eye contact on his own.
For our family, your discussion on this subject has truly been monumental. For one, it gave me the confidence to not allow a speech-language pathologist (SLP) at the IEP meeting to “talk” me into allowing the school to “work” on this skill. I used this time to remind the committee that, although my son has his challenges, we would still respect his choices and his body. Just like many other aspects of life, communication looks different with everyone including my own son.
Simply put, your discussions and sharing helped me be comfortable with the fact that I don’t care where my son is looking as long as he is communicating, talking, sharing his thoughts and feelings. I feel that as parents, it’s easy to get caught up in expecting your child to do just as you ask simply because you said so; choosing to respect P’s need to not make eye contact helped reinforce our respect for him and his needs. I believe it is laying the foundation for us to have a strong, open and trusting relationship which began with respecting eye contact.
I’m curious about the reaction of school staff when you made these requests; you mentioned an SLP, for example. How much pressure was there to work on eye contact? And when you stated you would prefer not to, how did folks react? Were they supportive?
E: I felt a large amount of pressure before I even got to the meeting as I’d be responsible for communicating my son’s needs on his behalf; and it was my first time in this setting. Also, I’m still learning that even though there are professionals who are a part of this journey, those professionals do not always know what is best or right for my kiddo.
Before the meeting and during I kept reminding myself of how my son reacts to eye contact and everything I had read regarding eye contact and respecting a person’s needs from you, Jess, Sparrow and others. I wanted to make sure my son and his needs were respected so I was the one to bring up my son’s need to not make eye contact and his stimming. Being the one who initiated this conversation I believe caught the committee off guard, which played to our advantage. (There’s so much a parent needs to know about how much say they have in these meetings.)
The SLP was the first to express her disagreement, saying how eye contact was an essential part of communication and that his goals were communication-based, therefore this needed to be included. I explained that I understood what she was saying but then the LSSP (Licensed Specialist in School Psychology) added that this was in P’s best interest because he is so young. (It was insinuated that with time this skill would be “repaired”.)
I reassured the committee that I understood their stand but what was a priority to me was that P continue communicating, talking and sharing. I allowed the committee a few more minutes of explaining what they believed would benefit P but shortly after I firmly answered, “This is non-negotiable, you are not to request eye contact from my son.” I felt so sure of my decision in large part because of the reading I had done.
The principal was the first to say my request would be included in the IEP and ASD Supplement. But then the LSSP stated that the request I was making was not in P’s best interest. Again I reminded the committee that, as P’s parent, I always have his best interest in mind.
Had my strategy not worked I had a backup plan of showing “data” of how this demand hurts P. I recently learned that, according to the law, parents have a right to provide their own data. Basically, you observe how your child reacts to a demand/event and keep record of the child’s response for the committee.
I guess it surprises me, even though it shouldn’t…the fact that your son is only 5, yet they are pushing so hard for compliance with eye contact…it just makes me very uncomfortable hearing that. I know they mean well…I know a lot of school staff are wonderful people.
E: I hope and pray the staff at his school will respect and follow the IEP. However, I do plan on making many surprise classroom visits to ensure his IEP is being followed. I’m considering explaining to P that his teachers shouldn’t insist on eye contact but if they do how to respond. I think this could be a step toward instilling self-advocacy.
My son was diagnosed less than a year ago, I’m still learning a lot about him, about me and about autism, so bare with me if I make a mistake or just plain over-share
I’d say you’re doing great. And it wouldn’t be my place judge mistakes anyway; my life has been a big collection of what-not-to-do moments. Thanks for sharing your story.
E: Thanks for all of your encouraging words and input.
(Note on the terminology: IEP stands for Individual Education Program; it’s a school document…basically a written game plan for a qualifying student’s school year, where their strengths and challenges are listed and educational goals for that year are spelled out and (hopefully) tailored to the student’s needs and abilities. In the United States, an IEP is mandated by the Individuals with Disabilities Education Act.)