Don’t Shoot the Messenger

Like most families, our weekends are packed with errands we just can’t get to during the workweek. Whenever I leave the house I make sure I have my keys, my purse and my son – Jeff is actually a great organizer and keeps me on track.  Funny how our roles have changed so many years after his early prognosis!

As I pull out of the driveway, I often wonder “as I run my errands today, at what point will I see a child with autism?”  Will it be 10 minutes in at the first store?  Sixty minutes later at the market?  In the restaurant Jeff chooses for us to unwind at the end of the day?  When will it be?  The question isn’t if anymore, it’s when.

I don’t know about you, but whenever I am out and about, I see kids with autism everywhere.  I see them at the grocery store, the hardware store, the park, restaurants and especially the Apple store.  Wherever I go, there is always a child with autism.  I don’t know but this phenomenon doesn’t feel like 1 in 91 children living with autism.  It feels like 1 in 10.

The hardest moment for me is when I see a child with clear autistic symptoms (1), than I look over and see parents who are beyond frazzled.  I know that look.  I can tell those parents have not yet heard the word autism, at least not to describe their beloved child.  But in their hearts these parents know something is wrong.  And my heart goes out to them in this moment because I REMEMBER how hard it was to finally admit to myself, to say out loud “something is wrong with my child,” and then to take the necessary steps to tackle autism head-on.

Each week, I am approached by someone familiar with autism, often parents of an ASD child themselves, who thinks a relative or a friend or a neighbor has a child with autism.  These well-meaning, caring people recognize the telltale signs because they have experienced them before.  Their intention is so pure – to help another family come to terms with the possibility that their child has autism, and most importantly to get the child to diagnosis and treatment as quickly as possible.  But they fear hurting their friends.  They know the family is scared beyond words and most likely doesn’t want to hear what they perceive as criticism of their child.

We have all heard the old saying “Don’t shoot the messenger.”  It’s human nature to associate bad news with the person delivering it, so of course no one really wants that job!  Friends sometimes refuse to hear and walk away when the words “I think your child may have autism” are uttered.  It’s happened to me and it has happened to other TACA members I know.  But if that child DOES have autism, I’m willing to risk losing a friendship over losing a child.

Because if not you, who?  And most importantly, if not now, when?   No one wants to have a family join the “autism club” but no one wants to watch a family struggle without answers or help.  The most important thing to remember so that you can find the courage to approach someone you care about is this: early intervention and proper medical care can’t start until parents are willing to admit their child has a problem, and that the problem may be autism.

So how DO you approach a tired, stressed, scared parent with the message “I’m concerned your child may have autism?”

Here are some pointers for families who see a child that potentially should be diagnosed with autism.  Use these points to guide the process in a positive direction for a family in need:

• Remember these families are fragile. These families are beyond tired, stressed and scared! Like fine china, they should come with a “FRAGILE” label stamped across their foreheads!  Autism is a diagnosis no one wants to hear but living in uncertainty and helplessness IS worse.  Sometimes a kind word of guidance from the heart of a trusted friend can make a big difference.
• Suggest to “rule things out.”  When you observe the child exhibiting symptoms that may seem obvious to you it is important to proceed carefully.  Some words that have helped me include:  “I know you are challenged with some of Johnny’s/Jane’s behaviors.  Perhaps it would be worthwhile to visit a caring professional who can help rule in or rule out possible underlying causes for these issues.  It could lead to a diagnosis or could be nothing at all.  I know some good local resources that can help define the issue so you can navigate toward a solution. Please let me know if I can help.”  Be ready with good referrals when they are ready to ask for help.  Make sure referrals can properly assess, diagnose and create a report with strong recommendations on how to proceed.  I urge you not to pounce on the family with a ton of information and a long list of action items – it will overwhelm them!
• Follow up with the family after the initial appointments, sit and talk through what they “heard” from the doctors to make sure they have a correct understanding.  Remember the autism world is full of tests, labs, therapies and other words most parents never have to hear.  Autism has its own language and you can serve as an interpreter while the family is learning this new language! Help these fragile families one step at a time.
• Know the signs (2).  Autism is a myriad of symptoms and each child with autism can present completely differently.  Some typical children can display some of these symptoms and not have autism.  An autism diagnosis becomes increasingly likely with the addition of multiple issues. It is important to know the signs and not take a wait and see approach. The earlier you act the better possible outcomes for that child.  Let them know that is why you want to help.
• Don’t be afraid of the label.  An autism diagnosis can drive service and treatments.  (3) (4)  Some families are scared to “label” their child.  I would remind them that the label drives the support.  Let the family’s know the nice part about labels is they can be removed.  Without the label, children’s needs are often overlooked.  Sadly, if these issues are not addressed early, it can mean heartache and tons more work for the family, especially for the child.
• Know you are not alone, TACA is here.  The diagnosis of autism is not an easy process for anyone in the family.  The best support you can offer post-diagnosis is TACA. We are here to serve families living with autism and most of what we provide is free.  TACA’s main objective is to help families go from suspicion to diagnosis to proper treatments as soon as possible. Let TACA help.
• Don’t like confrontation?  Send a note via email or mail.  I don’t really suggest this route BUT if you just CANNOT summon the courage to approach the family directly, send them a note with the helpful article “I think my child has autism” (5) and tell them to contact you if they have any questions.
• Hope is real.  Autism is not a “game-over” diagnosis.  TACA families learn to accept the autism challenge as “game on.”

In the past 11 years I have received hundreds of calls, emails and happy face texts from parents telling me that their ASD child, after receiving seemingly endless treatment and therapies, no longer qualifies for services!  In other words, their child has progressed SO much they are no longer distinguishable from their classroom friends who do NOT have autism! Children with autism can make great progress, some can recover.  That is the ultimate “label-removing” party, and I have been a very happy party guest at more of those than I can count!

Let’s face it – nobody wants to deliver scary, life altering news to people you care about.  By stepping up to the task for a child that could have autism, you can instigate positive change by initiating the conversation.  By helping neighbors, friends, or family members understand the signs of autism, obtain a proper assessment and diagnosis, and seek effective treatment, you can change the course of an entire family’s life.

It is ok to start the conversation.  It is ok to help families through the diagnosis process.  With autism, these families will need their friends more than ever.

References:

1)     Symptoms of autism http://www.tacanow.org/about-autism/

2)     Is your baby meeting important milestones http://www.tacanow.org/family-resources/is-your-baby-meeting-these-important-milestones/

3)      What autism symptoms mean http://www.tacanow.org/family-resources/what-autism-symptoms-mean/

4)     Traditional therapies overview: http://www.tacanow.org/family-resources/traditional-therapies/

I think my child has autism: http://www.tacanow.org/family-resources/i-think-my-child-may-have-autism/