How difficult is it to live with family members who are unable to feel empathy for you or each other?
I’ve had a series of interesting e-mails from a woman who recently discovered the empathy symbol and the website. She tells of the daily anguish of living just such a life. She suggested that we add “families” to the motto on the bookmarks and magnets, which says: “Empathy– the first step to peace in our schools, communities, nations, world.”
I thought her experience should be shared, and she gave me her permission to do so here, even though she felt some trepidation. She believes that the lack of empathy in her family members stems from undiagnosed Asperger Syndrome. She is aware that this might be controversial in the Asperger community. But looking on Wikipedia, I found that Hans Asperger, the Austrian pediatrician who identified the syndrome in 1944, “described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy.“ Saying that at least some people who have Asperger Syndrome have a difficult time feeling empathy for others is not a judgment, and it doesn’t mean that all such individuals cannot learn to feel and understand how things are for another person.
I think it’s important to listen to her experience with an open mind and heart, and really hear, and feel, what she shares:
“As you know, empathy is a very personal issue for me. … living with decades of no empathy from your spouse, daughter and other extended family members can be deadly. I believe my sister suicided in 2006 in part from the lack of empathy she experienced over 25 years with her husband-probably undiagnosed AS. She didn’t think she could live with him anymore, but she also didn’t think she could live without him. It has taken me 32 years to realize my husband probably has AS. It took me 52 years to realize my parents and sisters probably also have/had it. What took me even longer was to realize the impact on ME from living with non-empathetic people for all of my life! I have found a whole world of Asperger Spouses who struggle with depression, anxiety, physical illnesses from decades of neglecting themselves and caring for others and/or stuffing emotions and feelings which family members will not allow expression of. …I attend a monthly Asperger Spouse Support, or ASS, group.
…Prior to finding your website, my favorite website was that of Maxine Aston who has described “Cassandra Affective Deprivation Disorder” experienced by the spouses of those with Asperger’s. Unlike Autism, which is usually more obvious, people don’t believe they have AS, or that your spouse might have AS. Thus, you speak the truth that there’s something wrong, but nobody believes you. It is truly a curse. For 10 months my family has denied the possibility they have AS, just increasing my despair after a brief glimmer of hope that I finally understood what I was dealing with. We have finally found a competent health psychologist experienced with AS and are working towards a diagnosis, but much slower than I’d like.
If you are ever interested in learning more from my perspective, or that of other spouses, I’d be willing to set something up. Again, my bottom line recommendation is to add the word “families”, because the lack of empathy IS deadly within families, just as much as it is in other aspects of our society. The reality is that if people don’t learn empathy within their families, or during K-12 schooling, it will be much more difficult to learn it other places. Since AS did not exist as a diagnosis until 1994, there are many, many undiagnosed adults in our world who are not eligible for the educational services young students receive today. Our health plan does not cover AS as it is not “curable”, even though it has impacted my health severely. But health insurance companies don’t look at the health impact on others from your disability. There’s a whole can of worms out there in relationship to this issue.
Thanks again for the symbol, and the affirmation and hope it brings to me (and others) that someone is acknowledging the importance of something we lack on a daily basis within our families.”
Having grown up in a family that was awash in empathy, I can only imagine her pain; I thank her for sharing her story with me, and now with you.
And yes, we will be adding the word “families” to the empathy motto soon.