Autism Acceptance Month: Encouragement for Parents

Holland autism acceptance month

Hearing that your child has been diagnosed with Autism Spectrum Disorder is a personal experience. There is no “normal” way to react; therefore, any way you respond is “normal.” I have been the one to deliver the diagnosis to parents many, many times, and I count myself privileged to have been invited into each family’s story. I want to encourage parents to do whatever they need to do during our session when we review their child’s assessment results together.

I’ve seen parents experience many emotions once their child is diagnosed, often mixed emotions. The assessment process is long, and parents usually consider the diagnosis long before seeking an assessment. The following are some emotions I’ve seen parents experience when I’ve provided them with the diagnosis.

Many parents feel relieved to finally have an answer after sometimes years of worrying about their child. With a diagnosis, there is a path to help their child.

Many parents feel worried about the future. Although a diagnosis provides a path to help their child, parents don’t know where that path ends. I often get questions about what will happen in adulthood for their child. Truthfully, I can’t answer that about any child, including my own. What I am certain of is that helping their child now will also help their child in the future.

Some parents feel angry for a variety of reasons. When anger has been expressed to me in the past, sometimes it comes from a place of regret and other times disbelief. Hearing your child has a diagnosis takes time to process, and being angry about it can be part of the experience.

Some parents feel shocked or numb. Even when the diagnosis is expected, receiving the diagnosis can be so overwhelming it causes an emotional overload, and they end up shutting down. Over time, other feelings are likely to emerge, but initially, feeling numb is a common experience.

Many parents will experience grief after their child is diagnosed. Having a child diagnosed with Autism is a complicated grief. Parents often feel the loss of what it would be like to have a neurotypical child. I read the following poem many years ago, and I believe it captures parents’ experiences well. Although it was initially written to encourage parents of children with Down Syndrome, I think the feelings are universal for those parenting any child with a developmental diagnosis.

Author:

Dr. Heather Eritz, Ph.D., Registered Doctoral Psychologist

 

 

Welcome To Holland
by Emily Perl Kingsley
Copyright©1987 by Emily Perl Kingsley. 
All rights reserved. 
Reprinted by permission of the author.

 

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 flight attendant 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.