Why We (I) Chose Not to Share

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This has been heavily debated in our house over the last year.  I have always felt very strongly about not sharing our son’s autism diagnosis.  And it’s not for any one cut and dry reason.  There are so many factors that go into each and every day of being an autism parent, and so just flat out telling people seemed like it would have way more outcomes that I felt ready to handle.

First and foremost, I don’t feel that it’s necessarily anyone’s business.  I know that sounds snippy and defensive, but it’s true.  I mean, does every single person who ever gets some kind of medical diagnosis or illness immediately share with the world?  No.  If you had genital warts, are you going to broadcast that?  Doubt it.  There’s definitely a right to medical privacy.  With that said, I know that this isn’t the same, and that having autism creeps into daily life, so it automatically becomes more relevant to share sometimes.

The second big thing, and this encompasses pretty much every other reason, is fear.  I am afraid of a lot of things in regards to this life.  If people know, will they judge my son?  Will they judge him more than maybe they already do because they know he has some delays/shortcomings/doesn’t act the way many kids his age act?  Will he ever get invited to things (because my kids are already not included in a lot of playdates/parties that I know my other friends have had)?  What if he freaks out in a social setting and people don’t understand?  That “what if?” list could go on for miles….or days….whichever seems longer.

I am scared of people judging my child.  Yes, he is different.  No, he doesn’t talk as much as an almost 4 year old should, and he’s not going to necessarily react when someone says hi to him or asks him a question that most kids could answer easily.  He needs more time to process before he speaks, he usually only speaks when he really cares about something, and if he doesn’t know someone, he’s highly unlikely to branch out.  But he’s incredibly smart, funny, caring, and affectionate.  I’m afraid once this label is “out there” that people will miss all of the wonderful things because they are so focused on the autism.

I’m also afraid of people judging me.  I’m sure there will be a lot of judgmental thoughts or comments behind my back about my not sharing something like this for over a year, but honestly it doesn’t matter, because I did what I felt was best for my family.  Parents judge other parents whether they like to admit it or not.  I’m guilty of it as well.  It starts immediately when a baby is born and comparisons are made to any and every other baby that’s ever lived.  Parents take pride on their kids hitting life milestones (especially before others’ kids who are close in age)….I get it.  However, I do not take criticism well, and especially do not care for parenting advice.  There are only two other people I know (one my age, one with grown children) who have a child with autism that could possibly know what this life is like.  And even our situations are completely different from each other.  So advice has to go out the window unless it was asked for.  My child isn’t a typically developing child, so milestones, benchmarks and other things that parents pride themselves on are totally skewed for us.

My last large fear is the unknown.  There is so much that isn’t known about autism and there’s so much that the general population doesn’t know about autism that it makes it that much scarier for parents.  I have spent the last year devouring books and articles, trying ideas, programs or activities, following up with my son’s teachers and therapists, but that’s just how we do things.  I have been researching and I still have so much to learn, so how am I supposed to help people who have never been exposed to this understand all of the ins and outs?  Scary.

This probably makes me sound like I live every day in constant, paralyzing fear, which is really not the case, but these are the things I think about.  Not all the time, but certainly if a new behavior starts, or we see any kind of backslide in progress made.  I don’t live under a rock, but I am and will continue to be incredibly protective of my son and family.

My wonderful husband has let me take the lead on all things related to our son, his education, therapies, home activities, and has gone along with my wishes.  But even 10 years in the education world didn’t make me slightly educated on this until I had to be.  I think when people hear “Autism Awareness” they think, “yeah, I’m aware it exists.”  But there’s SO much more going on that unless you are forced to face it, you’d probably never have any idea.  Here are the big things we KNOW about autism (that really barely scratches the surface):

  • 1 in 88 children are diagnosed with autism.
  • 1 in 54 for boys.
  • if you already have one autistic child, the chances that a subsequent child will also be on the spectrum is greatly increased.  As high as about 25%.  This study from 2011 concluded that if it’s a boy, it could be a 1 in 4 chance.  A girl around 1 in 9 (Makes things a little extra frightening when you’re 6 months pregnant with a baby, doesn’t it?).
  • A new study shows that there’s a 1 in 50 prevalence among school-aged children.
  • Diagnosing can happen long before age 2, whereas in the past, a lot of things like ASD or ADHD didn’t get diagnosed til kids were school age.
  • If you’ve met one child with autism, you’ve met ONE child with autism.  Each and every case is SO different and they really can’t be compared.

And here are the things we KNOW about our son:

  • He is not broken.  He processes differently and likes different things than kids his age.
  • He is not a label.  He’s a little kid.  Everyone has challenges, but his just might be a little more noticeable to others.
  • If he is in an overwhelming situation, he might get upset and resort to crying, having what looks like a tantrum, cover his ears, and/or need to leave right away.  This is called sensory overload and happens easily with kids on the spectrum because they can be much more sensitive or not sensitive enough to sensory input.  That makes things easy, right?
  • He DOES make eye contact if he’s interested and he DOES give hugs, kisses, and seek out people he wants to be around.
  • He probably won’t talk to people who try to initiate conversations with him.  He is a very deliberate speaker and seems to know exactly how much (or how little talking) he can get away with to get his point across.
  • He is incredibly smart and seems like he may be a whiz with numbers.  He has known all of his letter sounds for months, recognizes some words already.  He can figure out how to get into pretty much anything/escape from anywhere.  He’s unbelievably resourceful when it comes to getting what he wants.
  • Bottom line: he is HAPPY.  He may have occasional meltdowns and lots of challenges ahead, but my baby is a really happy little kid.  And while we hope for progress and big gains and lessening this burden that he’ll have for his whole life, if he is happy, that’s what matters the most.  He may not openly say “I love you” to us, but we feel it 100 times over when he comes up and says “10 kisses, Momma?”  or something like it.
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