Wednesday, March 2, 2011

My Life with Autism is Worse than Your Life!

It happens in every support group, online or in real life. It happens at conferences and on Web-based blogs. For whatever reason, there is eventually the "trump card" that someone uses to end a discussion:
Your life / your child's life with [autism | other challenge(s)] is not nearly as bad as my life / my child's life with [autism | other challenge(s)].
Someone will feel compelled to respond, "No my life is worse!" The conversation spirals downward, a complete celebration of misery, despair, and self-pity. About that point, I exit and seek out something animated to watch -- from Disney to Warner Bros, anything is better than people competing to be the most damaged human in the group.

The problem is that most of us have an impulse to respond to such nonsense. We don't like to have our own experiences discounted by someone else. It feels lousy to be dismissed, especially if it is by someone unfamiliar with our personal stories. Too often, the person complaining has no idea what the stories of other group members might be.

The assumptions are many, and we all do make assumptions. One problem is that many people dismissing us with "You don't understand how bad my / my child's life is!" are basing this on a few minutes of personal contact, a few online posts, or their personal biases. The ensuing competition doesn't help anyone, often leading to hurt feelings and more animosity and anger within disability communities. Trying to "top" everyone with misery can seem like an attempt to denigrate the experiences of other people.

So many assumptions have been said and/or written about me (and often to me) that I have to remind myself that people are just being human. I still end up responding more often than I should, though. That only encourages the comparative suffering analyses. Yes, comparisons are pointless, and not very "supportive" of anyone seeking assistance or knowledge.
Note: I don't believe "autism" is one thing, one condition -- it is various "autisms" with a multitude of characteristics and experiences. Comparisons simply don't work across the so-called "autism spectrum." My experiences cover a range of situations unique to me. That's true of every person with an autism diagnosis.
No one, other than my wife and my parents, knows the "full story" of my experiences with disabilities. I've written about those early months, a first year of life that no parent wants for a child. I understand that disabilities affect entire families, not only the person with a challenge.

Instead of comparing and challenging the authority of others in support groups or online, try to pay attention to their unique perspectives.

The constant divide between the "high-functioning" and "low-functioning" individuals / parents / care providers is one of the triggers of "My life sucks more!" Let's be blunt, your lives are different. The challenges are different, the supports are different, the legal issues are different, and even the views of what is "autism" are different. I don't always understand Asperger's Syndrome; I admit, I have been invited to AS support groups and don't understand some of the discussions. I am not low-functioning, either. And I definitely don't understand the perspective of parents or spouses of autistic people.

If you don't want to know about life from a particular perspective, quietly exit the room, online forum, or whatever space is hosting the discussion. Don't try to "one-up" other people. Sometimes the best thing you can do is leave before the debate descends. If someone else is getting caught up in the "life sucks" trap, that might also be a good time to just walk away and do something fun.

10 comments:

  1. Good point. I find myself feeling like one-upping, but everyone is different. For example, my wife handles things very differently than I do; maybe I can deal with less than her, making it worse. Sometimes, though, it's good to vent!

    ReplyDelete
  2. What a great post! I find myself caught up in the circles frequently enough, and find myself leaving feeling as if my son isn't "autistic enough" to even fit in with the Autism crowd. It's a horrible feeling. I find it frustrating that it seems to be this battle of who "has it the worst" rather than trying to have a civil conversation about what we can learn from one another.
    Kudos to you for tackling this! I think all of us involved in the Autism circle in one way or another can learn something from your post!

    ReplyDelete
  3. It is a challenge for me to not respond to some of the nonsense said or written, but responding is also a waste of energy most of the time. My wife tries to remind me of this -- walking away is fine.

    The hardest thing to do is walk away from statements about how easy my parents must have had things, since I seem "relatively normal" when people glance at me today. The years of time, money, worry, heartache, etc, that parents invest supporting children with special needs should never be discounted. Never.

    I've met parents of teens with severely depressed teens with Asperger's Syndrome. That has to be every bit as scary and difficult for a family as dealing with a non-verbal child. Each situation differs, but no parent or disabled person has an "easy" story to share.

    I get upset when one parent tells another they can't understand. Maybe not precisely, but they can relate in some way. Even I realize how hard it must be for families, just running through a checklist of possible complications in my mind.

    The common line I receive: "My child will never communicate. You can't understand what that's like." I want to respond to that just typing it right now. But what good is explaining something when what that parent is really stating is, "I'm still absorbed in my anger, self-pity, despair, and I'm not ready to listen, yet. Whatever you say cannot possibly relate to my life."

    ReplyDelete
  4. Well-put! I don't know how many times I've been told that our life is easy because our child is on the higher-functioning end of the autism spectrum. I try not to reply to that - I know that whoever is saying it has probably been through a pretty rough patch in their own situation, needing some sympathy. I wish others would "get it" but I don't NEED them to "get it" to continue to help my child and find methods to help him improve.
    Thank you for a very thought-provoking post!

    ReplyDelete
  5. It is not nonsense to point out that there are different levels of severity and functioning associates with autism spectrum disorders. Someone who can write a blog comment called "My Life with Autism is Worse than Your Life!" does not share the same autism challenges as a 15 year old who can understand SOME of what is said on Little Einsteins, Sesame Street etc. and should not presume to dictate to others including parents of severely autistic children how they will describe and compare their child's autism. This is particularly so because there are so many high functioning autistic persons who purport to speak on behalf of the severely affected by autism, people with whom they have little in common in life challenges.

    The DSM5, for all its flaws, recognizes differences in functioning levels in the New Autism Spectrum Disorder.

    Get over it.

    ReplyDelete
  6. Yeah, let's hand Harold the prize, he's got it worse than everyone, at least for another 3 years when he can dump his kid on some unsuspecting institution, which will then bear the brunt of his wrath. Maybe that will distract him enough to leave us alone.

    All together now, poor poor Harold!

    ReplyDelete
  7. Curious CS. All other things being equal, if a man with no arms tells the man with 1 arm that it is more difficult to do things with no arms than it would be with 1 arm, would the man with no arms be spouting "nonsense".

    I'm really curious as to how you would assess that argument.

    ReplyDelete
  8. The point of this entry is that we cannot presume to understand another person's life experiences, including his or her disabilities. You cannot make one-to-one comparisons because human existence isn't "things being equal" -- especially the things we cannot see in a moment.

    I was born severely injured. I'm not angry about it, that's just how I am. The delivering physician later took his own life. Personally, I believe he must have had far more serious disabilities than I have. His weren't visible, but they were clearly unbearable. What we can't see of another person, we can't judge.

    It is nonsense to presume to know the challenges of another person. They might have none, they might have dozens we cannot see. It can seem narcissistic to assume "my life is worse," a sort of emotional self-flagellation. I've met people with terminal conditions who were amazingly positive and supportive of other people. If they can be so strong and supportive of others, I should at least try to be more understanding, too.

    Yes, some people have far more challenges than I have. That doesn't mean I can't be searching for more knowledge and understanding. We must not discount other people. Ever. Yet, that's the norm in many disability communities -- they attack and dismiss each other, not even knowing what the other person might deal with daily.

    Discounting experiences of individuals and families is wrong. It means you aren't listening to and learning from their unique experiences. It means you aren't even trying to be empathetic -- you are wanting all the attention for yourself and your problems.

    You meet me today, you only know how I am today, this one day, in only the most superficial way. You don't know anything else. You have no idea what I've experienced, and I have no idea what you have experienced. If someone tells me his or her story, the odds are I can learn from that story. I can't learn, however, if that person expends energy only on telling me how awful life is.

    And, I actually knew a man with no arms. He worked at a department store in the menswear department. He had those mechanical hooks for hands (1970s). He was always smiling and optimistic. Disability was more about a state of mind than physical limits. Jim Abbott is close to my age. He's another example of state of mind.

    Intellectual impairments and neurological disabilities are different, but state of mind affects those, too.

    It is not healthy, no matter what else, to be negative all the time. It simply isn't good to be bitter, angry, combative, and dismissive of other people. It can't make life any better or more enjoyable.

    ReplyDelete
  9. The severly autistic doesn't have the choice of free will or self determination that they could tap to "make the best" out of their situation. There isn't any mechanism afforded them to do that. Can you understand this?

    ReplyDelete
  10. I've met incredibly upbeat, supportive parents of children with severe disabilities and parents who were crushed by the situation. That's why I mentioned parents engaging in the comparisons, not only people with disabilities.

    I've witnessed the parent with a "severely" impaired child telling the parent of a recently deceased child how "lucky" that parent was. How much better and easier life would now be for the family. That's not understanding or support. It was cruel -- even I could tell the difference in tone and attitude. It was, "My life still sucks! You're lucky that child is dead." It wasn't compassion. It was devastatingly vicious.

    I wish I had only dealt with such situations one or two times. Compassion is what we are supposed to show other people, even if we believe our situations are worse. Compassion is in short supply, though.

    ReplyDelete

Comments violating the policies of this blog will not be approved for posting. Language and content should be appropriate for all readers and maintain a polite tone. Thank you.