Saying the wrong thing

It’s not an easy thing to talk to someone right after they have a death in their family, but at least there is an accepted script to follow.  “I’m very sorry for your loss,” or “You are in my thoughts and prayers.”  It may be an awkward conversation, but everyone knows where to start.  There are also some acceptable things to say when you learn someone has cancer, like “You’re a fighter.  You can beat this.”  I am still struggling to come up with the right thing to say to a parent who has just learned that their child has autism.  You can’t say, “I’m sorry for your loss” because a child with autism is not dead, nor is he in any danger of dying of autism.  Yet the parent is definitely going through a variation of the grieving process.  You can’t say, “You can beat this.”  Autism is not something that goes into remission.  That child will always have autism.  You can’t say, “I’m sure he’ll be fine” because you don’t know that.  No one does.  What can you say to this parent that will be supportive and kind, yet won’t offend them or make them feel bad? 

After SB’s diagnosis, I told everyone I knew.  There was no way I could avoid talking about it.  It became the only thing in my life, the only thing that I thought about all day long and all night, too.  If you know me, you know that I’m not very good at hiding my emotions and feelings on a normal day.  So there was no way I was going to be able to go about my day without talking about this huge thing that was happening in my life.  Everyone I told had a response that I’m sure they thought was kind and supportive, but I got offended a lot.  No one seemed to know the right thing to say.  Everyone said things that made me either sad or angry.  Why was everyone saying the wrong thing?

The answer is that I was so irrational, so sad, and so overwhelmed that there was literally NOTHING anyone could say that would make me feel better, until I read a certain book.

Do you have a favorite book?   Not just one that you read a lot, but one that you have paper-clipped your favorite pages and underlined your favorite passages because they speak to you so clearly?  I do, and it’s called Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life.  This book is authored by two women.  The first is Lynn Kern Koegel, who is an expert on autism treatment and one of the founders of the Autism Research Center at the University of California, Santa Barbara.  The second is Claire LaZebnik, who is an author of fiction and the mother of a child with autism who was treated by Lynn Kern Koegel.  All of the advice in the entire book is excellent, but it is the segments of the book written by Claire that I really love.  Everything she writes in this book makes me want to jump up and down and scream, “Yes!  That is exactly how I felt!”  

One of my favorite sections of the book is where she describes how she got offended by everything people said to her in response to her news.  I’m probably quoting way too much of her book here, but I just feel like it all needs to be said:

I know I said I was glad I told people, but I have to admit that I was horrible about judging everything said to me in response back then.  I was hurting all over, and however calm and rational I may have sounded, inside I was quivering with the expectation of being hurt more.  Let me give you some examples of the innocuous things people said and how I overreacted to them.

There were the people who jumped a little too eagerly at the news, in my opinion – “Oh, well, THAT explains it.  I mean, it was clear something was going on…”  That reaction always pissed me off.  Are you telling me my kid always looked and acted weird to you?  You never said anything to me, but now you’re telling me you were sitting there JUDGING us all the time?

(Remember, I wasn’t being rational – I was being emotional.  Also remember that I didn’t say any of this out loud.  Thank goodness.)

Another group went for reassurance.  “Oh, really?  Well, I’m sure in a few years he’ll be fine.”  Yeah?  How do you know that?  The experts we’re consulting don’t know what lies in Andrew’s future, but you’re so incredibly clairvoyant you do?  Give me a break.

Sometimes people would try to act like it was no big deal, that they themselves went through something similar with their totally normal kids and came out the other side.  “The early years are hard for all kids,” they’d say.  “We were so worried when our kid was three and didn’t play catch, and now look – he’s captain of the softball team!”  Wait a second – was your kid diagnosed with autism?  Excuse me, but was your kid diagnosed with autism?  WAS HE DIAGNOSED WITH AUTISM?  Because, if he wasn’t, I don’t really want to hear about your experiences.

I knew that those who expressed sympathy meant well – “Oh, how awful!  I’m so sorry for you.  You must be overwhelmed,” etc.  The problem was that, at that emotional point in my life, they only made me feel worse.  My son – my gorgeous, bright, loving little boy – had turned into something so awful that people pitied me for having him.  That sucked.  (Later, I grew to kind of enjoy the pity and sympathy.  But that was later.)

Worst of all were the people who questioned the diagnosis without any medical or neurological information to back up their challenge: “Are they sure?  Because he looks fine to me.  Sometimes doctors just SAY these things because it’s what they like to say.  I just don’t believe it.”  You don’t, huh?  Did it ever occur to you that we didn’t particularly want to believe it, either?  That we ran home to read everything we could about autism only to discover, with a sick stomach and heart, that Andrew had pretty much EVERY SINGLE SYMPTOM of your basic classic autism?  Self-stimulation?  Check.  Social delays?  Check.  Language delays?  Check.  Inability to make eye contact?  Check.  Inability to point to something he wants?  Check.  Inability to follow simple instructions?  Check.  And so on.  We’re telling you our kid has autism because we’ve done the research and know it’s true.  So please don’t start second-guessing us or the experts we trust. 

I realize I’ve gone on kind of at length about how easily I slipped into feeling offended at that time, but it’s for a reason: I want to make it clear how incredibly fragile and wounded the diagnosis had left me.

The truth was, of course, that every friend and relative I spoke to was kind and sympathetic.  They all offered help and support.  I just couldn’t see it, because I was one raw gaping wound, an exposed nerve, a total wreck.

You are, you know, when you get that diagnosis.  You’re a wreck.  There’s this huge thing in your life that wasn’t there before.  It sits there looking at you, and you try not to spend all your time thinking about it, but it just takes up too much space.  You can’t not think about it all the time.

Reading this passage of the book felt like someone was reading the thoughts out of my mind and writing them down more neatly and concisely than I ever could.  And not just reading my thoughts, but reading things out of my subconscious that I didn’t even know were there.  It was actually kind of eerie.  Before I read this, I just thought that no one in my circle of friends and family knew what I wanted or needed to hear.  But after reading this, I suddenly realized that the problem was ME.  Of course people were saying nice and supportive things to me.  I was just too wounded, too irrational, to comprehend it.  I recognized that I needed to stop judging everything people said and just accept their words.  This was so much harder than it sounds. 

(This is not the only passage of the book that I really identified with.  There are many others.  And all of the advice in the book is practical, logical, and positive.  If you have a child with autism, this is a MUST READ!)

There were a few other types of responses that we received that Claire does not mention.  Many people replied by complimenting our parenting.  “Oh, you and Charlie are such wonderful parents!  I’m sure you’ll do all of the right things for him.”  Of course, this is a kind thing to say, and it should have made me feel better.  But it really didn’t, because I had no frame of reference for parenting in a situation like THIS.  How could I know that I was going to do a good job parenting this child with special needs?  I didn’t know a thing about autism!  I once assumed that I knew how to be a good mother, but everything that I thought I knew about parenting had just been thrown out the window.  Another thing people said to me that didn’t help at all was, “God only gives you what you can handle.”  I do believe in God, yet this phrase gives me no comfort.  I think there are plenty of people in this world who are dealing with more than they can handle.  Again, I recognize that these thoughts were meant to be caring and supportive, and people were trying to be helpful, but I just couldn’t see it or accept the support because I was in this constant state of despair.

The only thing I liked hearing about in the time right after SB’s diagnosis was success stories.  “Oh, my neighbor’s kid has autism!  He’s in third grade now and doing really well in school.”  “My nephew has autism, and he is so sweet and kind.”  I clung to stories like these.  I thought about these children often, even though they were children that I had never met.  I needed to believe that it was possible that my child could maybe, someday, be just like them.  Very recently a friend said to me, “Sometimes it’s difficult to imagine your children being different than they are today.  But they will be.”  So true.  When SB was 20 months old, it was almost impossible for me to imagine that he would ever be different from the nonverbal, completely distant toddler who could not communicate with us or understand what we were saying, so he just cried and threw tantrums all day long.

My goal with this essay was to give the reader advice on what to say to a parent who has just learned that their child has autism.  And now that I’m in the concluding paragraph, I’m not sure that I’ve done a very good job.  In the “definitely what NOT to say” category, I can tell you that all comparisons to Dustin Hoffman’s character in the movie Rain Man made me cringe.  The phrase, “you are in my thoughts and prayers” is always good, I guess.  Be a good listener, and know that there may not be anything you can say that can make this painful time go away any faster.  But most importantly, give the parents success stories.  Tell them about real children with autism that you know that are thriving under the care of the right therapists.  And if you don’t have any success stories to tell because you don’t know any children with autism personally, then you can tell them about mine.

5 thoughts on “Saying the wrong thing

  1. This post is one of the best writings I have ever read about the subject of autism. Thank you for sharing so courageously. I have a friend whose son is autistic and I always wondered what to say. Now I have two and a clue to go with them.

  2. I found your blog through a post of yours on the POAC listserv. Thank you for sharing your experiences; I enjoy your writing.

    The kindnesses I remember most are from the people who knew that my son couldn’t talk back, and they talked to him anyway. They found that my son was hard to engage, and they sat on the floor with him and his toys anyway. They witnessed a meltdown and helped him calm down instead of getting embarrassed or angry. That kind of support continues to mean more to me than anything.

    And recently, when a friend told me about a neighbor whose son didn’t start talking until he was 12 (my son is nonverbal at 9), that was nice too. 🙂

    Thank you again for your blog.

  3. I don’t know, I appreciate people acknowledging the loss by saying I’m sorry. I also like it when people acknowledge that it can be challenging. It seems to make me feel like I’m not a failure for finding it to be a challenge, LOL.

    1. Yes, Alisa, it does feel good when people recognize that what I am going through is difficult. But I’m pretty sure that in those first few months, there was NOTHING anyone could have said to make me feel better. But it DOES get easier. Very slowly…. 🙂

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