Tuesday, November 23, 2010

Diagnosis: Disclosure vs. Discretion

There are positives and negatives with everything right?  Well, when dealing with your child being diagnosed on the spectrum, how do you tell people?  Do you use the utmost discretion or disclose the diagnosis left right and center?  Is there a happy medium?  Let's hope so.

After receiving Austin's diagnosis, my husband did not want to tell anyone that didn't really need to know, including his family.  I did not agree with him in the slightest.  I was angry at him and thought if people knew about Austin (since he was quite hard to diagnose and he is such a cute, sweet boy) maybe they wouldn't feel so badly about having their children assessed, if need be.  I have learned, some people just don't want their child to be labelled.  It is almost like "autism" is a dirty word or something.  People don't get it.  That is why I thought Austin could help put a face to PDD-NOS.  The spectrum, as you all well know, is vast.  I am starting to see my husband's side more and more in recent days, shhhhh ... don't tell him.  ;)

So, disclosure has its good points and bad points like anything.  Positives, people knowing that my child has a diagnosis helps explain his quirky behaviors and speech.  They would understand more when I say "we cannot come to dinner, it is too late for Austin" or "it's just too much".  Hopefully, people would be more patient and understanding ... hopefully.  Negatives, when I tell someone, maybe another Mother at a park or playdate, it's the look of pity or sorrow that crosses their faces and the "I am so sorry" shows that they don't get it (that is not their fault though).  This is just who my son is ... he is a very bright and loving child ... I am SUPER LUCKY!  They don't see that ... now telling another Mother who has a child on the spectrum is different, they encourage you, not pity you.  They feel for you because they are aware of the challenges but they know, they love their baby the same way you do ... unconditionally.  I never get the "pity" feeling from them, they "get it".  Another huge negative for me ... BULLIES!  Yes, I said BULLIES!  My son is a bully magnet (I will not get too deep into this right now) and it seems disclosing his diagnosis makes him even more of a target.  I am struggling with this a lot lately.  I have a very dear friend who is going through hell.  I really feel for her.  Anyone ever see the bully scene in "The Hand that Rocks the Cradle"?  Honestly, it makes me furious to see my son being bullied!  I think disclosure adds to this problem.  I hope that I am wrong.

Discretion, well let's see.  Positives, I can stay right here in my little comfy closet.  I mean, no one said I have to out my child, right?  It is nice in here, no explaining or funny looks because you never have to say "autism".  Everyone else stays in the dark and everything remains the same.  People don't need to know why your son does 700 laps around the Christmas dinner table ... blame it on the chocolate I say!  The problem here is that, when other people have spectrum children, they already know or they suspect.  I do it myself because now I know.  Negatives, people don't know and think the child is spoiled, out of control or the parents need a Super Nanny intervention ... STAT!  Also, the danger factor, I have to remind someone looking after Austin not to let go of his hand because he could pop into traffic.  When people know about his diagnosis, they seem to be more aware.  I had a neighbour let go of him one day and I just happened to turn around (Mother's intuition, swear, something I just felt and turned) and there he was in the middle of the street!  (This happened at a street yard sale, the number of cars, I cannot even tell you.)  Thank God I turned when I did and ran and grabbed him.  A man started yelling at him as I picked him up and ran.  "Why did you walk right in the street, you are going to get killed!", he yelled at Austin.  I hate to tell you what I wanted to yell back at him!  The neighbour does not know of his diagnosis and maybe would have taken me more seriously when I said "Don't let go of him if you take him with you, I mean it, don't let go!".  She felt badly ... I felt WORSE!  I could only think "what ifs" for hours and days to follow!

Well, this is a personal choice for sure.  I think I am more in the middle than I have ever been.  Mainly, the bully factor is the biggest thing for me and I don't want people to pity my son.  On the other hand, I hope that people who I do meet and disclose the diagnosis to, might know someone who needs help.  They may say, "Austin is on the spectrum and look at how far he has come in such a short time.  This is not the end of the world".  I just want to help.  These children need it no matter how you go about it.  *HUGS* to all.

P.S.  This post is just for you F.G.  Sorry you were postless for a few days.  ;) ox


The Maven said...

You're right: there's pros and cons to everything. Personally, I think as long as any support staff, close friends and family know about Austin's diagnosis, you don't need to explain it to anyone else. Just enough for him to get support, and for you and your hubby to get the support you need, too. Life with SN kids can be a roller coaster!

Let's have coffee soon, k? I miss you!

Mommie That Gets It said...

Hi Maven! :) Thanks for your comments! You said it! El Grande roller coaster!

Yes, let's! Ditto baby, ditto! OX

Jaxmom said...

I just found your blog and read this posting with tears in my eyes. I have a 10 year old son who was diagnosed with PDD-NOS, ADHD and SPD about a year and a half ago. We are very fortunate that he goes to a school where there's very little turnover, so kids have been with him since kindergarten and they "get" him. He has very good friends at school.

Our problem is the neighborhood kids who like to provoke him till he lashes out, and then HE is perceived as the bully. They say cruel things to him. Once they made a club that all the other kids in the neighborhood could belong to--except Jack. The main rule of the club was you couldn't play with Jack. As a result, he hasn't played outside for months.

Fortunately he has good friends at school and within our church community. He's a very bright, loving boy. Super smart. Just different. I wouldn't trade him for the world.

It's such a comfort to read other people's stories. Thanks for sharing!

Debbie K.

Mommie That Gets It said...

Hi Debbie!

I am glad you like my blog! I found yours and went over to read about Jack. He sounds like a wonderful boy! :)

Yes, bullies ... Austin is a big guy so we have raised him not to retaliate, so next year, he will start self defense. It is interesting how fast children pick up on the differences, much faster than adults, and they go for the jugular! Sad really.

I am so sorry that these kids are so mean to Jack. It is really too bad in this day and age. We should be celebrating and encouraging peoples differences and uniqueness ... really ... I am glad he has good friends. Austin does too.

I am so happy you enjoy the stories. I enjoyed your blog too ... I am a follower! :)

Thank you! HUGS!

:) Heather