Jane is a 68 year old woman diagnosed on the Autism Spectrum. She is a wife of 46 years, mother of 2, grandmother of 5, was self-employed for most of her career, and was diagnosed in 2014. In her interview, we discuss how her later in life diagnosis has affected her, her communication style, her experiences with Autistic burnout, aging, and more. We want to extend our thanks to Jane for agreeing to share her insights of Aging on the Autism Spectrum!
GRASP- When were you diagnosed on the Autism Spectrum?
JS- Age 65
GRASP- Did your diagnosis change your life? If yes or no, how?
JS- Diagnosis made a difference in my life. I finally knew why I was different. I am more able to make choices that are better for me. I don’t do things that I know will be harmful to my emotions. It helps my husband understand me better than I am able to understand myself. He learned about AS and it helped him. It also helped my daughter forgive and love me for who I am. It helped me with friend relationships. My friends don’t necessarily understand much about AS but are willing to accommodate me.
GRASP- What, if any, has been the biggest benefit or difficulty of being diagnosed?
JS- Diagnosis is good. It helps me to understand that life will not change for me and I cannot be “normal” no matter how much I want to be. It helps me to make better decisions about choices I make.
GRASP- What job did you do most of your life and what did you like most and least like about it?
JS – I stayed home until my children were out of high school. I liked being home. I was very much of entrepreneurial person having small businesses from home. I worked prior to marriage at several secretarial jobs, but never lasted very long as I found it very boring to have to sit so much and not feel useful. After our children were grown, my husband and I had several contractor type businesses where I did sales and office and he did the outside work. I was very good at it.
GRASP- In retrospect, did your Asperger’s Syndrome affect your employment or career? If yes or no, how?
JS- I worked from home and for the most part only spoke on the phone with clients. Asperger’s kept me at home where I was comfortable. Because I am organized and detailed, we did well. I did not know I had Asperger’s until I was 65 years old.
GRASP- What advice do you have for younger Autistic adults and individuals on the autism spectrum who are just beginning employment? And for those building their careers?
JS- Do what you are driven to do and do what you need to do to feel safe.
GRASP- What means of communication do you excel at? (ie: emailing, speaking, acting, poetry, talking on the phone, writing letters, etc) and has that changed as you became older?
JS- I have never excelled at communication. I have been told that I am a good writer.
GRASP- What, if any, advantages or difficulties do you have with verbal/non-verbal communication being an older adult on the Autism Spectrum?
JS- I have a difficult time communicating verbally. I try to think about what I am saying, collect my thoughts, and figure out what has been said and what they want to hear at the same time. I feel like the sentences come out in little blurbs of information, not consecutive thoughts. I am talking and words are coming out, but somehow I don’t feel connected to them. Gets worse as I get older.
GRASP- Please compare and contrast your experiences communicating with a neurotypical versus someone on the Autism Spectrum; please explain if that has changed as you became older.
JS- I am always thinking that the NT is not “getting me;” I am afraid of saying something wrong and not knowing what it is I said. I don’t know about communicating with the AS person and would still feel they don’t understand because even as AS we are all different. They would understand some things.
GRASP- What, if any, advantages or difficulties do you have with maintaining friendships being on the Autism Spectrum? In what ways, if any, has this changed as you’ve gotten older?
JS- I have recently moved across the country leaving friendships that took me years to be comfortable with. The people I left loved me completely just as I am. I was completely (almost) comfortable with them. I was in a safe place with them and they worked with me. If we went out to a restaurant and we had to leave because of the noise level or too many people, they were fine with that. When I was ready to leave, it was not a problem. Moving has been very difficult and I will very slowly let people into my life. I make friends through the church I attend. I am very careful to keep myself in what I call a “safe” place so I don’t feel trapped. I allow myself to keep myself protected from things or people that would upset me. I am very comfortable doing only the things I am comfortable with. Getting older gives me freedom to do what I need to do to feel safe.
GRASP- In what ways, if any, have your friendships and/or community changed since being diagnosed?
JS- I was diagnosed at age 65. Since then I have more understanding of who I am and as stated above I am more careful and free to make decisions that are best for me regardless of social conventions. If I need to leave a situation, I leave. I don’t expect people to understand me as I do not understand myself. I do not strive for a large association of “friends” just a very few. I would like to be more social but it is not possible. My husband of 46 years understand me better than I am able to understand myself.
GRASP- As an Autistic woman, writer, and clinician, Judy Endow writes about the experience of Autistic burnout, which she describes as when an Autistic person comes to the end of their resources that enables them to act as if they are not Autistic to the world around them. In what ways, if any, have you experienced Autistic burnout? In what ways, if any, has this changed as you’ve gotten older?
JS- I often have “burnout.” I attend church, but many times will have to make a quick unpleasant exit do to almost anything, noise, distraction, smell, getting too close to me. I tried to attend meetings with groups of women, but have not made it through the meetings and have had to abruptly leave. When I am with friends they know when I am done, I leave. Getting older has not improved the situation. I just have knowledge that I can do what I need to do to make myself safe. For instance, I attend prayer meeting and my husband puts a chair in the doorway for me. I am away from others. In this small group, there is much understanding. I tell people I am on the autism spectrum. Of course, they don’t know what that means, but it gives me leeway.
This interview has been minimally edited for length and clarity.