The Two Words You Can Say to Someone Facing a New Diagnosis

We have moved across the country again and have been at our new home for a couple of weeks.  I must admit, I feel like a veteran autism mom this time around.  Even though we are still early on in our journey, this move went much more smoothly.  Services for our son have already been established (services I have been working for months before the move).  I walked into his new district building with two former IEPs, his medical diagnosis, birth certificate, lease, medical records, and slew of other paperwork.  I filled out registration papers with three kids climbing all over me and trying to tear down the waiting room and I didn't bat an eye.  I've got this.

As seasoned and experienced as I'm feeling as of late, I was caught off guard when two friends recently started going through the diagnosis process with their children and I didn't know what to say.  I think I found myself tongue-tied because all I could think about was all of the things not to say.  All of the well intended comments that were made to me when we started this journey that were meant to comfort but cut like a knife.  During my discussion with these moms all of those comments came rushing back into my head.  Some almost came out, because I just didn't have the right words in that moment.  Wow, this is what it feels like to be on the other end of this conversation.  Even without the right words early on I just couldn't bring myself to say the wrong ones.

I wouldn't say "I'm sorry."  I heard a lot of these.  And they were always empathetic and heartfelt.  But they made me feel worse, not better.  I didn't want people to be sorry for me.  While this life might be different, it is not less.  While my child might miss out on some things, he is not less.  His life and his diagnosis are not things I feel sorry for, you shouldn't either.

I couldn't say to these moms "He'll be fine."  I don't know if your child will be fine.  I don't know that early intervention will move mountains.  I don't know what the next twenty years looks like for you and your family.  And when people told me "You caught it early, he will be fine..." it hurt.  If he does not overcome, if he does not mainstream, if maturity does not lessen his symptoms...does that mean I failed?  Please don't compare our journey to that of a friend of a friend whose child has ASD, had therapy and is now "fine."  ASD is very complex and no two journeys are the same.  Even as a mother of a child with autism I am very hesitant to give advice, as I know my son's autism is not your child's autism.

I knew better than to say "Really?  He seems so normal."  I was surprised by how much I heard this one.  It seemed like an attempt at a backhanded compliment.  But it not only minimized what we were going through daily and nightly, it inferred that if he did indeed have autism he was abnormal, broken.

I would never say "Oh, I hope not."  I only got a few of these doom and gloom responses.  They lacked empathy and pretty much damned us to a life of a misery in one simple phrase.  It is not a comfort and it is not helpful to try wish away a family member's diagnosis.  It's hurtful.

You see, all of those are overthinking and overanalyzing someone else's situation.  Those phrases do not comfort, they simply insert my opinion when my opinion was not asked.  Parents facing an ASD diagnosis do not want unsolicited advice or pity.  They do not want you to minimize their feelings or give false hope.  They want you to listen.  They want you to care.  They want you to stay in their lives and not brand them as special needs parents.  They want you to understand that although their lives might be taking a different turn, they still need friends.  Their children still need friends.

Then it came to me.  The two simple and perfect words you can say: "I'm here."  And mean it.  Mean it through every struggle, every victory and every passing year.  Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands.  Mean it when you are making out the list of which children to invite to your child's birthday party.

They don't need you to be an expert on autism.  They don't need you to always say the right thing.  Now, more than ever, they need you to just be there.


Comments

  1. Right on. Thank you!
    I love when people just listen and don't offer reassurance, stories on somebody else or suggestions where to seek support. It's ok not to have words to offer, we have plenty of our own to share.
    Egle (I hope this time it will post, it is my third try)

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    1. Thank you for taking the time to read and comment. Sorry about the issues with posting, I might move to a different domain. You aren't the first to have trouble!

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    2. Fantastic.Thank you so much for sharing this,it was spot on!! xxx

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    3. Thank you for Sharing your story, my son is two in a half & he will be tested for autism & I have felt very heartbreaking, I have four kids & he is my baby! All I can think about is his future. But I have Faith & know that God has everything under control! Thanx again for Sharing

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  2. I completely agree: “I’m here” is sublime and very empathic. It connotes sincerity and the willingness to listen, which is what parents of children with autism need. You are right, we can never give them positive affirmations all the time, because we don’t know what the outcome of their treatments would be. Thank you for sharing this thoughtful post, Mandy.

    Kirk White @ Med Care Pediatric

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  3. I agree, we need ways to share our empathy and expressions. Please consider joining me in my Campaign for "i for Empathy" and to get a Facebook Empathy Button. Best Regards, Doug McLean…Father of Daniel who has Autism and CHARGE Syndrome. www.facebook.com/iforempathy #iforempathy

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  4. Than you for your post. After lots of testing and evaluations, our son's official diagnosis is coming this week. We are new to this world, but "I'm sorry" has always struck me as well-meaning, but off the mark. I wish things could be different for my son, but I wouldn't trade him for anything in the world. Your post brought tears to my eyes on a day when I needed a good cry.

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  5. My sweet Lilyana is 5 and she has been diagnosed a year ago. I have heard all of these responses as well. I've seen another article of yours posted on the Autism Awareness wall and it stood out to me because your son looks like a mini male version of ME when I was his age. It is so uncanny I showed my family and they all couldn't believe the resemblance. But anyway, my daughter is high functioning and my emotions are mixed about the responses people have had about her ASD. Thank you for being so encouraging!!! ~Linda Lewis

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  6. I'm an adult female who has apparently been living with autism my whole life, but never knew it until 5 months ago, in middle age.

    The word "someone" in "someone facing a new diagnosis" could also include a person of any age, who just got diagnosed themselves, reading your blog. People with ASD can be diagnosed as adults, and it's an extremely diverse group.

    A person reading your blog might also be facing new diagnoses, plural... likely first for their child due to all the school screening, then realize it for themselves, perhaps remember things about their parents and wonder, those stories about their grandparents....

    The research is finally starting to include females, as well as how to diagnose people as adults. Females with ASD are often very different from males -- what a shock! We often try our very best to hide it, may be motivated to have friendships more than many males, but horribly stressed when we make social errors; the brain scans in the tiny number of recent studies on this are different from males w/ASD but also different from "neurotypicals".

    It would be great to hear encouragement for folks to be supportive around the ASD issues that present difficulties (and there can be positive gifts too)...for everyone involved, I bet!

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