Coping With An Autism Diagnosis

 When I think about those months leading up to and immediately following Nicky’s diagnosis, I remember crying nonstop, feeling overwhelming guilt (what if I’d done something differently during pregnancy? what if I’d fought for a diagnosis sooner?) and complete exhaustion from talking about it to everyone.

The majority of the responses I received fell into two separate categories, but they were equally upsetting to me.  Mostly because they both presumed how I was feeling or how I should feel.  Unless you’ve experienced having a child diagnosed with autism or some other special need, you really can’t understand the multitude of emotions.   Before Nicky’s diagnosis, it’s very likely I would’ve responded in one of these two ways, myself.  It’s hard to know what to say to any parent in this situation, but maybe this will lend some perspective. 

The most common response is pity.  “I’m so sorry to hear that.”  “That’s terrible!  I don’t envy you.” “That must be so hard.  How do you cope?!”  I know that all of these responses are well meaning, but they immediately made me feel like I should be devastated.  The reaction wouldn't have been much different if I'd told them my child had a terminal illness.  Autism is not a death sentence.  In fact, a lot of autistic children grow up to be productive, independent and happy adults – probably happier than most of the typical adults you know.  Special needs parents don’t want pity or sympathy.  Our kids are amazing, lovable and incredibly inspiring.  We definitely experience struggles that other parents couldn't fathom, but our children make us smile every day, just like any other kid, and we feel grateful to be their parents.  

The other common reaction was to point out just how grateful I should be.  I was told to remember that my child was “perfect” no matter what.  Several seemed to point out my fortune that they couldn’t have guessed Nicky was autistic.  While the first group of people felt sorry for me, this group seemed to think I had no right to mourn either.  And there definitely was a mourning period.  As much as we may protest, no parent can deny that their child is born with a long list of hopes and dreams attached to them.   Little league, piano recitals, honor roll, college graduation, grandchildren…  Some of those dreams may still be attainable for an autistic child, but when I was just trying to get my little boy to look me in the eye and talk to me, the possibilities seemed pretty remote.   I love my boy just the way he is, but I also want more for him.  Honesty, I think that’s what makes me a good parent.  If I’d just accepted that he was perfect the way he was (and frankly, I don’t think any child or person is perfect), then I never would’ve sought the numerous therapies and treatments that have brought him so much progress.  I think my own complacency would've been a grave disservice to him.

I know … You’re damned if you do, damned if you don’t.  I don’t want you to think I'm ungrateful for my child, but I don’t want you to expect me to be grateful either.  Like I said…it’s complicated.  Honestly, I think it’s best not to talk to special needs parents about our feelings.  There’s nothing you can say to make it better or make it go away.

The best way to react is to listen and not impose advice or opinion.  Just listen.  Let us vent on the hard days.  Ask us questions.  Show us that you want to learn about autism or whatever the condition may be, and most importantly, that you want to get to know our children for who they truly are.  I’d rather answer questions all day about what makes Nicky tick than talk about how I feel.

There's an essay I came across a few years ago that really expressed the mixture of emotions in a way I never could.  It's like a trip to Holland...

WELCOME TO HOLLAND

by
 Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.