A No-Stigma Zone

stigma : (noun) a symbol of disgrace or infamy

I started thinking about this blog entry awhile back and I've just been chewing on it and letting it roll around in my head.  I've been thinking about how stigmatizing any kind of illness, physical or otherwise, can be.  Once someone is labeled as "depressed" or "autistic", we as a society, most often subconsciously, instantly attach all sorts of attributes to that person.  Perhaps we expect less from those people.  Maybe we expect to see certain behaviors.  We might even hold that person in lower esteem.  All because of a label.

DISGRACE????

Once I looked up the definition of stigma, I was really surprised.  Disgrace????  Never in a million years would I have expected that word to be used in the definition.   I think we'd all agree that there is nothing at all disgraceful about having a mental illness.  When Drew was diagnosed, I went through (and continue to go through) lots of feelings but disgrace was never one of them.  If anything, I felt emboldened by his diagnosis because I was feeling like a poor parent before I knew WHY Drew behaved the way he did.  Now that I know better, I parent Drew far better than I ever did before.  I really hope that Drew never feels disgraced by being on the spectrum.  I am going to do my best to make sure he is proud of who he is as he grows up.  At this point in his development, I don't think he really "gets" that he's not a typically-developing kid.  He does know that there are some behaviors he "can't help."  Once he's older, he will know his diagnosis.  There is no point keeping it from him because keeping it from him would imply that we are ashamed of it.  I am not and I don't want him to be.

MANAGING EXPECTATIONS

Sometimes, unfortunately, when someone is diagnosed with a mental illness, the stigma manifests itself as lowered expectations.  Right now, I am the main navigator of Drew's life but as he gets older he'll be making his own way.  I don't want him to have low expectations of himself and I don't want friends or teachers or co-workers to either.  The only way to assure that he will have high expectations for himself as an adult is for us to keep them high while he's a kid.  He knows a C is unacceptable.  He will mind his manners.  We may have to tweak how we parent in order to meet these expectations but, so be it.  He won't be allowed to use his autism as an excuse for poor behavior.  I used to have students who would tell me, "But I have ADHD."  That used to frustrate me so much. 

Instead of trying to excuse a difficulty with, "Drew has high-functioning autism" and stopping there, I would say, "Drew has high-functioning autism but it's not going to stop him from meeting expectation A.  What can we do to make this happen?  Is there a modification for this?"  My expectations for Drew are the same as for the parents of a typically-developing kid...high school, then college, then whatever would be his next step.  Drew's psychologist told us once that, "NASA is full of people just like Drew."  Yep!

TO TELL OR NOT TO TELL

Based on my experience, there are two camps when it comes to divulging a child's diagnosis.  Either you tell everyone when you are ready or you never tell anyone.  I was in the "tell everyone" camp.  Maybe some people are not fully on board with my frankness.  I think that this was my way of dealing with it....I had to face it...I had to make it real.  Telling people and answering their questions was really healing for me.  I grieved about this.  It was hard to let go of the childhood I thought Drew was going to have.  Talking about it was my way of taking away the stigma and making sure people (including myself) understood this was going to be okay and that it was okay to ask me stuff.

Another reason I told people is that it is practical.  It would have been unfair to leave grandparents, babysitters, and teachers out of the loop.  All of these people take care of Drew at some point and they need to understand how Drew "works."  Before he was diagnosed, I would nearly beat my head against a wall because I couldn't figure out what I was doing wrong.  I don't want Drew's caregivers to have the same experience and it is only fair to give them a heads up. 

Finally, I shared what we learned about Drew because NOT sharing, as I mentioned before, sometimes implies that it's something of which one should be ashamed.  I am not ashamed of my son and he isn't autistic because of something he did or something I did.  It just happened.

OWNING UP

The only way to de-stigmatize something is to face up to it.  Be the poster child for the problem.  Offer yourself up as an example.  Answer the questions that people ask.  When Drew was diagnosed, after the initial icky feelings, I wanted to be honest about it with people and myself too, for that matter.

There is no disgrace in having a child with autism.  This was not something we chose but I am thankful that we can have a chance to educate people on what it's like to be someone like Drew and show people that we should accept people how they are.  Hopefully, as he grows up, I can help him become a confident, successful, no-excuse-making adult.