You Don't Understand...
When a parent starts a conversation with those words, I know to anticipate a long list of what I don't appreciate as the person with challenges, compared to the parent of a disabled child. It is both a logical and an absurd statement.
I've never been another color, another gender, another nationality, or another religion — yet I would assume most people try to understand and appreciate the experiences of people from other groups. I know my childhood friends with Spanish surnames were treated unfairly by some teachers. I know people assume I know about cars, while it is my wife who is the engineer. You can appreciate without total understanding — because even within a group the experiences differ.
No, I am not a parent. I am not a caregiver. But, to assume I don't empathize is to accept one of the worst stereotypes of both autism spectrum disorders and mental giftedness. While I might not translate empathy quickly, I definitely have empathy. (All you have to do is be with me while watching a sad movie or when I see a sad story on the news; I have plenty of empathy.)
The lecture from the parents in the "You don't understand" camp usually focus on the stresses of catering (a word they often use) to the needs of their children. They tell me about costs, about time, and about the stress of wondering what will become of the child. The burdens of raising the child are listed, and the list is long.
And this ritual listing, this litany of sacrifices, is supposed to prove that I have no clue about living with the disabled child. How could I? After all, I was once the child, not the parent!
These parents assume that I didn't know my mother was spending her time trying to help me. That somehow I didn't realize that it was a lot of time and energy to take me to medical appointments, to argue with school teachers, and to be an advocate for my success. The claim assumes that I didn't realize my father was working lousy hours to pay bills and provide for my sister and me.
I knew by second or third grade that I was a lot work. I still am a lot of work. Ask my wife. I apologize constantly for being me. For the medical issues, the physical limitations, the strange compulsions, the palsy, the sensory sensitivity, and more. I'd have to be pretty dense to not realize I'm a challenge for the people in my life.
Telling autistic adults labeled as "high functioning" or Asperger's Syndrome, or PDD-NOS, or whatever, that they do not understand the parental or the autistic experience is to assume a great deal. I'd make some poor comparisons, but the basic truth is that to be "mildly" disabled is to still be disabled.
When a parent tells me I don't understand, I also point out that they don't understand my wife's experiences. Her life with me hasn't been easy. They don't understand my experiences. But, so what? We should at least be able to appreciate that our complicated lives each bring something to the discussion of living with challenges or caring for someone with challenges.
When someone tries too hard to be a martyr, I wonder why that person cares so much about cataloging the negatives. What about the good things that a child brings to your life?
A wonderful woman I know, who helped me through my doctorate during a rough time, told me that we are all disabled at various times. As children we need our parents and in old age we will need our children and the kindness of strangers. There comes a time when our bodies will fail us, it simply happens sooner to some than others.
Whenever I start to whine about something, my wife reminds me that I have her, my cats, and great family. I don't get to play for pity around her. I don't tell her that she doesn't get me. I don't try to convince her that she doesn't understand. Sometimes, I remind her that I have some limitations, but if I start to whine, she tells me I'm whining.
Instead of telling me or others that we don't understand, why not tell us what help you seek or what you want to accomplish? Complaining that you are all alone, that nobody understands, can only make you feel worse about life.