11 September 2010
World Autism Interviews: Rachel Cohen-Rottenberg/ Vermont
Rachel Cohen-Rottenberg publishes the blog, Journeys with Autism. She is a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).
At the age of 50, she awoke to her place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. Her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. Her work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurdiversity section of the ASAN website.
Elesia: You have a unique perspective to add to the employment arena in regards to people on the autistic spectrum.
Rachel: My main thoughts on employment issues come from the perspective of being a middle-aged autistic. Something significant and disheartening happens here in mid-life. A lot of us who were employed for many years, who didn't know we were autistic, and who therefore went full steam ahead trying to be like everyone else now find ourselves in a quandary: unable to work at the level we used to, but with very good track records of jobs, marriage, and kids that make it difficult to get disability or any kind of accommodations. We also tend to find that we don't have the energy to "pass" anymore, and so finding any kind of job becomes even more difficult. I have a master's degree with over 20 years experience as a writer and editor, and I was at the top of my field when I quit in 2003, but I'm now having trouble finding part-time work in my local community.
Elesia: Are there other barriers to employment middle-aged autistic individuals may experience?
Rachel: For me, it seems to be equally a problem of not being able to do the work inside a crowded office and not being able to come in and just chat it up with people and make myself more visible as a potential employee. I know that I can assert my right to employment and reasonable accommodations, but part of the problem is limited energy; whatever energy I might use for actually working gets taken up with the struggles to explain the basics of disability rights. I used to fight through every kind of overload and injustice, but at the moment, I'm feeling quite tired out. And I say that as an extremely tenacious and strong-willed person who has always made my own way. It's just what happens over time to those of us who didn't know what we were dealing with. It's a very big problem. I hope the folks coming up, who know they're autistic, use that knowledge to take much better care of themselves.
I'm fortunate in that I'm financially secure and don't have to work. And yet, I miss work. I miss the collaboration of working with other people on projects. I miss being a part of something bigger than myself.
Elesia: Please share solutions to the work issues related above.
Rachel: For disabled people in general, I feel that the most important thing is to make employers aware that asking for accommodations is not asking for special treatment. We don't have special needs. We have the same needs as everyone else. We need love, food, shelter, work, community, and purpose. What differs is the mode of delivery. Most typically abled people don't realize that they receive assistance for the way they operate every day, because the world is set up to accommodate them. It's set up to accommodate them so completely that the accommodations are all but invisible. When people with atypical abilities ask for accommodations, we are simply asking that the world be designed with our abilities in mind as well. For example, because of my acute hearing and auditory processing issues, I can't work in a crowded office, so I need an employer ho can either give me quiet space to work or enable me to work at home. All too often, though, employers see that kind of request as a burden rather than an opportunity to get a talented person in the door.
For autistic people in particular, the single most important obstacle to be overcome, in my opinion, is the expectation that we are going to socialize like everyone else. I can talk with someone about subjects of mutual interest, about work-related projects, and about problems that need to be solved. However, I cannot schmooze. I cannot make small talk. I cannot be indirect. I cannot read body language. In other words, I cannot do social networking. Unfortunately, we autistics are judged by the social norms of the non-autistic world, and that often leaves us unable to compete.
When I talk about the fact that autistics socialize differently, many non-autistic people think that I am excusing rudeness, which is not at all the case. I don't believe it's an inevitable outcome of anyone's neurology to be rude. I believe in courtesy, in consideration, and in friendliness. They are sorely lacking among people in general in our society, and I do my best to put them in action. But courtesy, consideration, and friendliness only get us so far in the social arena of work, as any autistic person will tell you.
Elesia: What do you miss most about work?
Rachel: I miss the dignity of having work. I've always been good at creating work, and I always have any number of projects going, but it's really not the same as having the larger world include me and tell me that I still have something to offer. That's a very hard thing to lose, and I'm not sure that I can get it back.
This is the story of a lot of us in mid-life. I hear it regularly from other autistics my age. It's a big problem, and the only way to approach it seems to be self-advocacy, early and often.