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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14 September 2010

World Autism Interviews: Susan Golubock/Arizona

Sue lives in Sun Lakes, Arizona. In addition to providing consult services to adults on the spectrum, and to parents of autistic children, she presents at conferences through her business, Making Sense of Autism. She has been an active participant at Autreat for the past ten years and is in hopes of launching a similar autistic conference/retreat program on the west side of the States. For relaxation, Sue plays tennis, and has recently joined a Mah Jongg group (stating that it's easier to socialize with a game to focus on). She is a Star Trek The Original Series fan who also enjoys books about forensic science.

Elesia: Employment issues are a huge topic in the Autistic community. As a mature adult on the spectrum, please share your experiences in the work force.

Sue: For me, burnout started in my 40s, almost 10 years prior to my self-discovery and diagnosis. I was a school-based occupational therapist. I championed getting out of the medical model of pull-out services and getting into the functional environment (the classroom) to work with students. Unfortunately, I worked myself out of a job. I discovered I couldn't function in other people's environments. I went back for a master's degree in assistive technology, thinking this would get me into an environment I could handle--a computer environment. I cut back to part-time employment to handle working on my degree.

When I finished, I accepted a part-time position at a university, thinking the small class size and quiet of a university setting would work for me. It was then I self-discovered why I was struggling so much with employment despite my years of previous success in my field. I started "coming out" to a therapist who worked with autistic children. At this time, my well-hidden--due to vigilance--autism-related characteristics started coming out. And I ended up losing my job without really understanding what happened until much later when I went back into school-based practice (this time asking for places where I could "escape" in the schools, though I phrased it as needing places to assess students and write reports). Later in life, I left school-based practice and ended up in clinic-based practice where I was guaranteed my own space.

Elesia: When you received a diagnosis, did you choose to share it with others?

Sue: I outed myself to anyone and everyone who would listen. I was desperate to learn what it is I did not know about other people, but was pretending to know so I could fit in. There was no way to ask people without disclosing my status on the spectrum.

Elesia: How did revealing your diagnosis affect you at work?

Sue: I focused my work on autistic clients. For a time, this combination of private practice in an autistic setting helped to keep me working full-time. By my mid-50s, I could no longer handle the pace and demands of full-time work. I dropped back my hours to less than 20 per week.

Every few years, I've redefined what I am willing and able to do (fortunately, I have a supportive boss) in order to find my remaining niche in my profession.

Elesia: You are still working now. Has anything changed? Do you have new struggles to face?

Sue: I'm now 64 and have reached another crisis, as I cannot deal with the energy and time demands of creating written reports, even though what I produce is excellent! Despite my constant effort to find a more efficient method, it just takes so long to convert what I know into words. I'm justified in retiring, but there is much more I still want to do. But I can no longer work in conventional ways. I've also found I no longer have the energy to keep up the image my husband, family, and friends have of me as a person who remains emotionally calm and able to handle life's little bumps (despite sharing my diagnosis with them). Interestingly, with each "letting go" of the person I never was, I am enjoying the person I am as I discover the pleasures of living life rather than just surviving it.

Elesia: Do you have advice for younger people on the spectrum who are entering the work force?

Sue: You are doing yourself and those who live and work with you a disservice by constantly working to compensate for the person you are by trying to "fit in." The energy required is neither recognized nor appreciated by others who assume you are Doing Your Best Without Knocking Yourself Out (like many people). As you get older, it only gets harder, and you'll find you are missing enjoying the pleasures in life. I gave up a lot to achieve what I have. And I would do anything to have back the enjoyment I felt in those years when I was a child and I was being the person I was born to be.


  1. I have had some of the same problems and have overcome them by using MacSpeech Dictate and Inspiration to dictate and organize my thoughts. Inspiration can take your outline and turn it into a word document or powerpoint slides.

    MacSpeech Dictate does take some training. I have found it is hard to proof read homonyms and I am going to try to use grammarly to overcome them. The beginning entries of my blog (http://journeythroughthecortex.blogspot.com) show the types of errors that you can make with dictation software.

    You can also compensate with dictating your thoughts into a digital voice recorder and using a transcription service. These days everything is being done overseas including medical transcription. I have seen services running about $6/hr billable in 15 minute increments.

    You may be able to return to being an OT, or you may take this hurdle of not being able to write reports as an opportunity to do something else with yourself. But, you need not give up completely on getting your thoughts onto paper.

    Good Luck.

  2. Another great interview, Elesia!

    At thirty (and without any diagnosis or desire to get one), I have to agree--it's not worth the stress and the energy-consumption to conform to expectations that really don't suit you as a person.

    That being said, for certain professions there are expectations that more or less have to be met. If you're providing a service--like OT--you have to be around people. If you want to be published, you have to be prepared to do some signings and other events that mean social interactions.

    I think the trick--and I'm still learning this--is to be there and be active, but to be willing to be you at the same time. While the general public may not be ready for this, smaller groups of people are. You can be selective, and we can work to get the rest of society caught up.

  3. Hi Elesia,

    I enjoy your blog so much that I just gave you an award. Come over to my blog for details.


  4. Thanks, Rachel! I appreciate your Shout-Out. ;)

  5. Elesia,

    I wanted to let you know I tagged you & gave you a blogger award in my latest post.

  6. Thanks, Stephanie! All my best to you and yours!