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.