~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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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.

E: 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.

E: 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.

E: 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.

E: 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.

4 comments:

  1. I believe that some of these mid-life issues may be a consequence of what has happened over the past decade. The boundaries of what society considers normal have become much narrower. Years ago, we didn't have to expend as much energy trying to pass because we weren't seen as outsiders, at least not to the extent we are now.

    After going through many years of life believing oneself to be an accepted and valued member of a modern civilized society, to suddenly be "othered" as we have been in recent years is a profoundly emotionally disturbing experience.

    When interacting with people at work or elsewhere, one starts to wonder how much they have been influenced by anti-Autistic prejudices and to feel, perhaps on a subconscious level, that one must be vigilant at all times to avoid possible attacks. And of course, it is not possible to be vigilant at all times. That is a huge unsustainable drain on mental energy, which would cause anyone to burn out.

    Meg

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  2. I am currently working on the proposal for a book that will be written for managers on accommodating neurodiversity in the workplace. As a recent business student graduate, one of the things I found to be profoundly disturbing is how completely unprepared most of my fellow students were/are for the diversity that exists within the workforce.

    Of all of our textbooks, disability issues were mentioned in about three or four (compared to racial and gender issues, which were mentioned in just about every textbook in one form or another). The idea of neurological diversity was not discussed at all until I brought it up.

    A particularly disturbing class was the all-purpose course on getting a job. So many students stressed that, were they in a hiring role, they would not consider someone who did not make eye-contact.

    Ignorance is a huge problem in today's workforce and society is currently doing far too little to prepare those in authority to handle their responsibilities regarding the rights of people with autism and similar differences.

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  3. Your comments add important points to this topic, Meg and Stephanie. Thank you!

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  4. > 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 totally understand what Rachel is talking about in regards to the above statement. I am in my early fifties and the past five years in the corporate environment has taken it's toll on me. I spent most of my life knowing I was different while trying to appear like everyone else. That all ended when I hit my late forties and my sensory issues just exploded. The only connection I can make is menopause. I think this is an area of research that should be investigated.

    -Liz

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