Dear Dr. Barb:
I have a 20-year-old son on the spectrum who has grown a lot and become quite successful in many areas. My problem is that he still engages in hand flapping when he is stressed. I worry that this makes it so obvious that he is very different. He has begun to refuse my requests to try to control this, saying that it is who he is and if people don’t like it, it is their problem. How can I convince him to stop this behavior so that others won't judge him?
Dear Overprotective Mama:
It makes sense that you want to protect your son from the judgment of others, but it's possible that in the process you're sending your son a message that you didn't intend.
The concept of “
ableism” is one that is becoming very important in disability circles. The underlying idea that many disability advocates rely on is that having a disability should not be viewed as something to be hidden or overcome, but rather is a trait like any other. The goal for individual with a disability should be to live a meaningful life consistent with their own goals and values and not to simply become as similar to “typical” individuals as possible. To many, the idea that someone needs to hide their disability because of judgment is ableist.
Of course, those with ASD are still part of society and have the same obligations as everyone else, obeying the law, treating others with respect, etc., but they should not feel obligated to “act normal” just to make others feel more comfortable.
For many of my clients there are some particular areas that frequently become issues. Often, families and support givers worry that an individual does not have enough social interaction because they interact with others less than other family members. Every individual has his or her own need for social interaction. If individuals feel isolated or lonely, it is important to try to help them find ways to increase their interaction. This always should be in response to their own desire and not an attempt to make them more like others. Some people find having one or two friends whom they see occasionally is a satisfactory level of interaction. Some people with ASD would like to have a partner, but others have no interest. One choice is not better than the other, and the important question is: What does the individual want?
Repetitive motor movements is another area where
ableism is an issue. If an individual feels uncomfortable with his or her patterns, it is a legitimate goal to help him or her replace a behavior with a less obvious one. However, if the behavior is not harmful to anyone but merely odd, an individual may choose not to change that behavior. In that case, helping an individual explain his or her behavior if necessary to minimize judgment might be a better choice. It might be necessary to give an individual with ASD information about how others might see the behavior so that he or she can make an informed choice. We should be careful not to make too big an issue out of what may be relatively minor.
Other areas that might be problems are eye contact, unusual dress or hair styles, special interests, career choices, and home organization. The question that those of us who care about those with ASD must always ask: “Is a behavior illegal or dangerous?” If it is not, then we can let the individual know what we see is the result of choosing a particular behavior, but it is not our role to tell others that “being normal” is the ideal.
I think it is particularly important that as parents, we don’t unintentionally convey the message that we only love or appreciate our children to the extent that they are like us. Too much focus on fitting in almost always gives the message to a child that who they are is not good enough. Have a talk with your son, explain what you see as the repercussions of his flapping, and let him make his own decisions.