Monday, October 8, 2012

Awareness and What A Diagnosis Is NOT

Aahhh... the magical diagnosis.  In the world of special education, a child's diagnosis is the compass rose and key that educators use to draw the map of that particular student's learning plan.  The diagnosis, by definition, is an evaluation of an individual to determine what is contributing to their educational and behavioral difficulties.  The diagnosis, therefore, is a tool.  It is a tool parents and teachers use to raise awareness and understanding about a child's particular set of behaviors, and nothing more.  It is most decidedly NOT meant to be an excuse for academic and behavioral shortcomings. It is not permission to stop parenting.  It should, instead, be a parent's notification of hard work in the near future.

I'll just apologize in advance-- this may turn into a bit of a rant.

As parents, we have two choices when our children act out in inappropriate ways.  We can either: a) apologize on behalf of our child for their bad behavior, and then take the opportunity to reinforce what acceptable behavior is, or b) intervene on the behalf of our child and explain that "she acts that way because she can't help it-- she has a "diagnosis".  One of these is a much better option than the other.  She might have a diagnosis, and she might not be able to help some of "it", but she can always do better with practice and guidance from her parents.

Now, lots of folks may not know this, so I'm going to let you all in on a little secret, moms and dads.  In ten years, when your kid is older and not under your constant watchful eye (I assume this is every parent's ultimate goal), Junior is going to be in big trouble if you are doling out the "can't help it" excuse right now.  First of all, when a kid hears that he can't help his bad behavior, he has zero incentive to try to behave better.  I mean, come on-- you just said he wasn't capable of behaving better by saying he couldn't help it!  Second of all, when Junior is all grown up and crosses paths with a reactive-type person, he is in for it!  What happens if Junior does something inappropriate, such as spits at this person, for example (or inappropriately touches, yells at, shoves, is smarmy, etc-- pick your favorite)?  I'm preeeee-tty sure the last thing that offended person is going to say is "you wouldn't happen to have a diagnosis, would you?  'Cuz if you do, that totally changes everything for me.  I don't mind when someone with a diagnosis spits on me!  You can't help it!  That makes it much less insulting."  All I can say, moms and dads, is good luck with that.  I hope you have a good dental plan and an extra room for Junior.

Now,I feel the hackles rising on some of you out there as you seethe about how I don't know what I am talking about.  I'm not saying that all bad behavior is inexcusable and avoidable.  Heaven knows that I have my share of undesirable behaviors to deal with between Princess and Birdie.  What I am saying is, when these inappropriate behaviors occur, they need to become teachable moments for our kids, rather than our cue to start making excuses to anyone in earshot of the "incident".  Do I think Princess melts down on her way back to class from the cafeteria every day because it's fun?!  Or because she is looking for attention?!  Of course not!  She is obviously feeling anxiety about whatever is setting her off (which is usually getting her feet stepped on or being bumped into).  Do I think that she can learn coping strategies to avoid these triggers and/or respond more acceptably than shrieking at the top of her lungs?  Ab-so-freakin'-lutely!  Do I think excusing her behavior by saying "she can't help it" is going to help her make friends and get along in the world?  HELL NO!  Her classmates don't want to hear that she can't help it.  My job as her parent is to help her learn to reel in that gut reaction to lash out, so that one day, maaaayy-beee, she won't completely freak out her classmates, and she can start to make more than one or two friends.

Uhhhh... Get ready, y'all.  I'm about to make some more folks mad...

I have recently come to the conclusion that a lot of the she-can't-help-it mentality that's going around is a result of all the autism awareness campaigns that have been so heavily publicized.  I don't think that autism awareness-- or any other awareness, for that matter-- is a bad thing by any stretch of the imagination.  It think it is fabulous that folks are learning about autism and it's prevalence.  I am simply saying that I believe some parents use the resulting public awareness as a way to "opt out" of giving it the old college try when it comes to teaching their kids proper social etiquette.  Thanks to public awareness, when a kid freaks out, Mom can just turn her head, sigh, shrug her shoulders, and say "He's autistic-- what can I do?  He can't help it!"  Then you're left sitting there wondering whether you're an ass for being annoyed with the kid, or whether mom's an ass for just sitting there doing nothing.  My money's on Mom!  My children both have autism.  My children act inappropriately more than I'd like.  My children also still get disciplined for inappropriate behavior.  If I don't address their undesirable behaviors and try to correct them now, how will Princess and Birdie ever learn acceptable ways to behave in certain situations?  By doing nothing during or after meltdowns, I would be essentially condoning the shriek-fest as an okay way to respond when upset, surprised, or disappointed-- definitely not a what I want.  I don't excuse their meltdowns because I know they are on the spectrum.  Instead, because they are on the spectrum, I work my ass off to make sure they learn better ways to express their feelings.  It's hard work, but since I have no intention of living with my kids for the rest of their lives am their mother, it is work I will do to help make them successful, independent adults.  And it is work that is paying off.

I am also noticing an alarming trend where kids are excusing themselves with their own diagnosis, which just makes me sad.  As parents, we sometimes walk a tricky line between being open with our kids about their diagnoses, and disclosing too much.  Or using what we think is more understandable language to explain complicated medical diagnoses to our kids, but instead oversimplifying the facts so much that the message gets skewed.  When a child tells you that he can't help the way he behaves because of his autism (or any other) diagnosis, you are listening to a child tell you that they understand they have permission from their parents to behave in this manner.  This self-awareness they have becomes an invisible crutch, and these kids use it to flog the people around them.  In the effort to be open and honest with our kids, we may inadvertently disable them with too much knowledge.  We have to be careful with our words, so that we explain without excusing.  I think I did that fairly well when I talked to Birdie last month about her autism, but I could see how it could have gone horribly wrong if I had explained autism as an excuse for her behavior rather than an obstacle to overcome.

My last ranting point has to do with why preaching awareness alone isn't going to work.  Awareness is, in large part, about educating the public about autism and it's many behavioral facets.  I would argue, however, that an equally important part of awareness is bridging the gap between the science and the humanity of autism.  People need to know how autism affects a child physically and emotionally, AND how it affects a child's family physically and emotionally.  People need to see the struggle of autism to want to understand and sympathize with it.  If autism parents want people to understand their children and sympathize with their plight, then those parents need to be seen trying to get their misunderstood kids to understand everyone else, too.  For true awareness to be achieved, the understanding needs to be a two-way street between those affected by autism and those that are not.  The public, in general, wants no part of any sort of awareness campaign in which they are being asked support a group that is doing nothing to help themselves.  When a parent uses a child's diagnosis as an excuse, rather than a tool, that parent cheapens all the awareness efforts that have been made by others, because they are making awareness about excusing instead of about understanding.

Ultimately, a diagnosis is not an end, but a beginning.  It is the beginning of understanding, awareness, and a long road to learning how to adapt and accept.

A diagnosis is never an excuse.

15 comments:

  1. This is a truly amazing and insightful post! As a high school teacher I see this all the time!

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    1. Thanks so much! I work in a school, too, and I see this there and everywhere I turn as well.

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  2. I'm nodding my head so hard right now that I think I just may throw up. ;P Oh...that was meant as a compliment.

    I SO agree with your last line and it is one of the things that irks me the most. Great post!

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    1. Thanks, Di! I think sometimes parents don't realize that they are part of the problem, whatever the problem may be. ;)

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    2. Are you talkin' ta me?!?!? *looking around nervously* Baahaahaa. It's OK for me to laugh right??? DI

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  3. I totally agree!! I had run a nursery school where half the class was autistic and I have seen it all. I have seen parents that won't give their kid any slack at all. I have seen parents that are just embarrassed by their children all the time. I have also seen the parents that looks like they have given up and just make excuses. I have also had fellow teachers tell me that I am to harsh on the children and that I need to not have such high expectations of them. But because I had high expectations, one little boy went from very few words to complete sentences. Another little girl was 2 and not walking and within 6 months was walking all over the place. You have to expect more because if you don't they won't give you anymore.

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    1. You are exactly right, Jennifer! Our kids are limited more by the expectations of others than any disability they may have! Keep up the good work. :)

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  4. I absolutely cannot pass judgement because I am not in your shoes! You know your kids best and what you say makes a lot of sense!!

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    1. Hi! I loved your post so much, I featured it! Check it out! http://momofbigalittlea.blogspot.com/2012/10/what-i-have-been-reading-this-week-13.html

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  5. Great post. I agree with every word. My son is 15 now and I think I used he is on the autistic spectrum once and then not as a excuse but to shut a bullying dad up. My best friend who has two nephews with non autism related special needs said to me one day that she really admired that I never used my son's autism as an excuse to let him do anything he wants. My worst memories are of him pushing other children in playgrounds and play centres when he was non verbal. I believe it was just his way of expressing "hey I'm here" but that is not acceptable behaviour especially if the other child is younger or smaller. Every time he did it I apologised to the other parent and took him away to sit on my lap for 2 to 5 minutes. It probably took about 6 months for him to truly get the message that he couldn't do that but eventually he did. I can remember driving home from play dates and parties in tears thinking no one would every want to be his friend. This was happening as we were going through the diagnosis process when he was about 3 years old and his younger sister was a baby.

    I remember when he was about 10 he and his sister go in an argument about a seat in a restuarant. This was always an issue with them (who chooses the first seat in a restaurant and who pushes the button in a lift). I had said before we went in it was his sister's turn but he took her seat. I told him he had to move and I suddenly realised that if he didn't move I couldn't make him because he was as tall me then. He looked at my facel knew I was serious and moved.

    If I hadn't set boundaries from a young age how would I control and 6 foot teenager with aspergers and all the hormones and issues that come with being a teenager. Taking the path of least resistance would I am sure have stored up major issues for me now.

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    1. I am so glad that my words meant something to you, and I am so glad that you decided to do things the hard way to make life better for you son in the long run. :) Thank you for supporting my writing.

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  6. You should do a follow-up article about the behaviors of parents that cause the behaviors of their kids. I had a guy who used to do things to irritate his mother on purpose because of how she reacted to the antics. She was one of those people who had a voice like Edith Bunker and spoke loudly to the guy because, as you know, if you have a disability then your hearing must also be limited. She would embarrass him without thinking in public with inappropriate comments ("Guy, ARE YOU WEARING YOUR CLEAN UNDERWEAR TODAY? YOU KNOW I HAD TO THROW AWAY SOME OF YOUR UNDERWEAR BECAUSE OF THE STAINS IN THE FRONT, BUT NOT THE BACK STAINS BECAUSE YOU'RE DOING BETTER WITH WIPING NOW!") or drawing attention to anything he did ("Guy, WHY ARE YOU COVERING YOUR EYES? CAN YOU SEE WHERE YOU ARE GOING? YOU KNOW IT BOTHERS ME WHEN YOU COVER YOUR EYES!"). So he made it his personal mission to do whatever he could to annoy his mom because, well, I don't blame him after spending time with her. He peed in her coffee, walked with a limp (nothing was wrong), covered his eyes 24/7, would purposefully walk with his pants undone so they would fall down, etc.

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    1. Om my gosh-- you are so right!! I see this happen quite often in the school, when kids play their parents like puppet masters. It gets very amusing or very sad very fast. Good idea, Perry Morgan.

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