You Don't Understand...

"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.


  1. There are many adult autistics out there that attack the parent POV. It's been going on since I discovered the online autism world 7+yrs ago.

    That hurts. That is where these parents come from. They have done their best, they have lost incredible amounts of sleep, spent incredible amounts of money (real or lost income), and then they feel like they are being attacked by the very people that should appreciate what they've attempted to do... turn children with complex needs into adults that can cope with their "issues" and have spouses and children.

    I have complained about the "system" but never about my children. I have complained about some of the issues with autism and have done my best to deal with the anxiety, the poor expressive language and that my eldest hasn't got a drop of empathy. Ironically, the severe one is emotionally "normal". The "passing for normal" one is not and between us and the school we're trying our best before highschool starts next fall, to make him understand the social rules. Am I expecting him to become emotionally normal... not going to happen... but he has to learn to navigate the social world and all we can do is attempt to explain it to him.

    I won't let the elder whine either. Autism may be the reason for his issues, but it's not an excuse. His #1 goal in highschool is to learn to ask for help when he needs it.

    Always remember that from a parents POV disability is exhausting and frustrating. We've been battered constantly by an unfeeling system and finding the right "team" takes years. We dread having to even think about long term or how those children we know won't qualify for it will ever manage on their own. Cut us a little slack.... we love our children and would give anything to make it easier for them... but we're tired and could really just use a pat on the back, a shoulder to lean on. as we go back out and try to do the best we can once more.

    IMO the one phrase I hate more than any other "I don't know how you have ever managed" (or something along that line). I always want to reply "Duh, it's called being a parent".

  2. I am a new follower on your blog. I am a special education teacher for students with moderate/severe disabilities including students with autism. I currently teach young adults 18-22 years of age. I really enjoyed this blog as I can relate having a few parents tell me "I don't understand" about their son or daughter. While I do not have a labeled disability, I feel I do understand as I am with their son or daughter 7 hours a day. I take the time to learn ALL strengths and weaknesses of all my students. I treat them as if they were my own child regardless of their disability. I know having a child with a disability is stressful, costly, time consuming, scary, and the list goes on and on. I know this just from being me and having empathy. However, this does not give parents a right to state "you don't understand". I do my best every day to help my students become as independent as possible and build on their strengths.

    I like how you point out that when a parent tells you, "you don't understand" you point out that they don't understand your wife's experiences. Sometimes parents need to get off the defensive stance and get to know the teachers before they accuse.

    While I have never been labeled autistic or of having any disability...I do agree that as your friend in the doctorate program said..."we are all disabled at various times". My girlfriend who has been teaching students with autism for 20 years once told me that most people have an autistic characteristic even though they are not labeled autistic. I totally believe this.

    You and your wife sound amazing...good communication equals good marriage. Sounds like that is what you and your wife have. Congrats!

    Thank you for blogging. I enjoy your posts.


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