Writing this blog has been an amazing experience and I have gotten a lot of positive attention. I am thankful people are reading it. I want to draw attention to the other side of that. I encourage parents and practitioners to read and reflect on this. In the autism community, spelling is new and exciting. We still have a lot to learn. As a result, spellers are constantly being asked their opinions and to put themselves out there to spread the word. It is an honor, but can be an extreme amount of pressure.
In many cases, spellers are happy to help, but sometimes I feel as though their regulation, emotional capacity, and previous trauma are not considered in these requests. I believe people need to consider how sensitive the information is that they are asking spellers to openly share, often publicly on the internet. I have seen it impact myself and other spellers in various situations I have been involved with over the years. It can be hard for even me to say no, when I am trying so hard to be an advocate. I often rely heavily on others to use their best judgement when making requests of me. I hope to work on being even more direct with others about what I can and can’t do.
It is important we are not parading autistic individuals around for personal gain or the gain of a therapy technique. I hear of movies, books, news articles, and advocacy groups online sharing stories about spellers and non-speakers. While these stories are usually good, it is hard for me to be interested in some of these, as I wonder about the comfort level of the individuals involved. I believe we shouldn’t spread the word about spelling to new families to the detriment of current spellers. In an area that is so new, it is important that we don’t place too much unnecessary pressure on the users of the method to further its growth. I am a proud advocate, however I prefer my blog as my primary form of advocacy because the topics are within my control.
Great post Mitchell! It reminds me of what previous advocates have said in preceeding years about the importance of not treating autistic people as “self-narrating zoo exhibits”. That it’s great that non autistic people finally want to hear our perspectives on things, but not at the extent of our privacy and rights as human beings. We need to be respected as people, and not treated as science experiments, or “lab rats”. And, of course, as disabled people, we’re dealing with so many things nondisabled people aren’t, and just getting ourselves through the day can be exhausting and overwhelming, so not all of us have the energy to do anything more. It needs to be the individual’s choice how much they decide to participate in advocacy and/or activism, not something demanded by the people in our environment. We don’t “owe” anybody anything in that sense.
You are a brave young man. I admire your honesty and vulnerability. Thank you for educating me along with so many others!
Mitchell, I must say that it has been a delight reading about your experiences over the years. You have grown so much as a person, and I want you to know that you inspire so many others both alike and different from you. Never give up, friend, and always have your eyes on your next goal. You have done and will continue to do great things.