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I’ve given this much thought lately because someone told my son he must be “ashamed of who he was” because he didn’t identify himself to a group as an “autistic person”. His response was to say he was proud of who he was but it wasn’t pertinent to the conversation. He later said sometimes he says autistic person and sometimes person with autism. It depends on what his focus is at the time and what he is trying to convey. We raised him (and our other children) to avoid labels. This was important to us because we wanted to teach inclusion and avoid any “isms” such as racism, sexism, able or disable-ism, or gender exclusions. He is involved with a theater group, Spectrum Theatre Ensemble, and they all approach it differently. They let each individual be unique. They all have an autism component but they are writers, actors, singers, and dancers. Their amalgamation of differences complement the whole and make them successful. I feel whatever is one’s preference, it is most important that we let each person identify in the way that makes them most comfortable and confident. Everyone is different and to demand each person use specific words to identify or introduce themselves may make individuals feel controlled. A majority of people may prefer one description but majorities should not, in my opinion, overrule an individuals right to self-express. Live and let live:)
This is such a great topic! This is something about which most autism parents worry. I think we start becoming our child’s advocate from the minute they are born and when the diagnosis comes; it makes us more protective. We become focused not just on how to help our child choose the best academic programs but also how to navigate the world. I know I, along with many of my friends who are autism parents, have had moments when we had to fight for our child’s best interests. One starts to have an “us against the world mentality”. This may keep our children safe but it can also rob them of their independence. We want our children to be successful in the neuro-typical world but its a scary place.
High school offered a modicum of safety because it was structured and someone was always watching. One is never sure how much support college can offer. The disability office does the best it can to give direction but it is still limited in the scope of its ability to offer support. Their support is more academic. The general consensus I hear is that most of the parents don’t worry half as much about their child’s academic success in college as they do their social and physical well being. We know our children are smart, innovative and passionate about their interests. What we don’t know is how other people’s children will feel about our children’s differences and quirks. If my child self stims, will this aggravate others because he is hand flapping while they are studying? Dorm life or classroom life may create new stresses and we are used to handing these for them. So we want the child to become independent but struggle with the balance. Most parents I know develop their own anxiety over the idea of not controlling the environment.
I can only speak for myself, but I do have guilt over these issues. If I leave him alone on campus, I know I am helping him develop coping and social skills. Yet, if something should happen to him, physically or emotionally, I would feel like I failed. I don’t want to hold him back, but I am scared to just let him enter such a big arena. I approached it one step at a time. First, I let him go to the classroom by himself. As he mastered this issue, he went to each building by himself, then campus for an hour by himself etc. As he did well at each point, I let go a little and it benefited everyone. I began to realize too much support actually caused him to feel smothered and increased his anxiety. With the advent of today’s technology we stay in constant contact. I still worry and sometimes I show up unannounced and observe from a distance. We compromise.
I think support has to be what works for the family but one size does not fit all. No one person can tell you that you are making the right decision or how much support is needed for your student. And honestly, as any parent knows, you will always question yourself. Good parents do this because they are constantly striving to be the best they can be for their child.