HEADS UP, I Think Your Child Might Have Autism

Swinging brothers. Jack (front) at age 2.

When Jack was three, we started to have some flashes of doubt regarding his behavior. When he started flapping his arms (stimming) with excitement, it was so cute! I think I even pointed it out to people as his darling new trait. However, after a while, the flapping also became a game changer: once I casually read that it is a sign of possible autism, everything suddenly became clear. We put all of Jack’s behavioral clues together: speech issues, rare eye contact, anti-social behaviors, fixation on certain things, low interest in toys, head in the clouds… I started researching and making appointments and contacting anyone I knew with a connection to autism. My brain started reviewing his life and my question to the world formed:

Why didn’t someone say something to us???

Knowing what I know now, I can’t be a bit upset; I’m pretty sure I know a few answers to that question:

1. Not a lot of people know much about autism.
2. All kids do some peculiar things and it’s hard to know what’s “normal”.
3. Jack wasn’t “obvious” enough. When I told a few friends we were getting him assessed, they were quite surprised because he “seemed normal”. It was only us as parents who could really see subtle hints and feel that something was off.
4. What would they have said anyway?? What a sensitive topic to bring up to a parent!

IF someone HAD come to us to address their concerns about Jack, I know it would have been very hard to hear. I might not have believed them. I might have been hurt and defensive.

HOWEVER, a suggestion of autism could have put my son in helpful therapies that much sooner. I believe I ultimately would have been very grateful to whoever alerted me first.

Look at this cutie! Jack before we ever suspected autism.

One of the first things I learned about Autism Spectrum Disorder is that early intervention is one of the best tools to help a child. The earlier you have a diagnosis, the sooner you can start to work with your child in a way that will be effective for him or her.

I will admit that some pangs of guilt come when thinking about the time I wasted thinking about Jack’s strange speech patterns, but not doing anything about them. Had someone planted the idea to just ask a doctor or call the school district, it might have jump-started the whole process.

Time to Share the Love: Spreading Autism Awareness

Once Jack had an autism diagnosis and we were ok with it, I felt a strong urge to inform everyone about signs of autism. I pictured myself out in public, noticing autism all around me. I would march right up to a parent of an arm-flapping child at the park, open my mouth, and say…

Uhhhh.

I have no idea. What would I say??

Is there an ideal thing to say? 

Yeah, that’s the problem. This is a very sensitive topic. We are talking about a real person here—one whose future this parent is planning for and dreaming about.

I couldn’t answer these questions on my own, so I turned to none other than: parents of autistic kids (via Facebook groups). I asked what was said to them before their child’s diagnosis, or what have they said to others.

The majority of parents expressed the same idea: talk about your own child and let them open up to you.

Several people I asked used the term “open a door”, by intentionally bringing up autism as it relates to their diagnosed child. Once starting a conversation, measure the other parent’s response. If they don’t appear to want to go through that door, probably stop. If you can tell they don’t see any connection between your child and theirs, you’ll have to decide: do you want to connect the dots for them or do you want to leave them with a list of behaviors to chew on and research in private? Perhaps share how you researched autism in your beginning stages and who you consulted.

You could close a conversation by saying something like, “Thanks for letting me talk about my child’s autism. It’s a topic I like to discuss and some people don’t want to listen.” This could serve as either a way to smooth out any awkwardness in bringing it up, or to “open a door” for them to start a future conversation with you.

Silly Jack.

It they do express interest, let them talk! Listen with understanding and let them “get it all out” before jumping in with any suggestions or comparisons. One mom said, “In my experience, people have been relieved to be able to talk about it to someone who understands. I think people are less defensive about it when they know they are being heard and not judged.”

One brave mom would talk to her piano students’ parents if she saw certain behaviors. She said, “sometimes it clicked right away and sometimes parents totally denied any problems till months later when they had conferences with teachers and that short chat we had was remembered, they were ready for more info. I feel that sometimes it just takes a crack in the door before someone is ready to walk through it. I just had to be ready and courageous enough to crack the door open a little bit.”

In one very positive experience, someone’s family member told them they thought her son was autistic by saying, “I think your son has been blessed with looking at the world through different glasses and beating to a different drum. If you get him some lessons he’ll go far and be a talented young man.” Because of that approach and the support the family member gave them, the parents came to understand the child and he was nurtured in the manner that he needed.

There are many ways to talk to someone about autism and the responses will be unique to everyone. Only start the conversation with love and understanding. Let them know that this is a spectrum you’re discussing. Their child might not be as severe or have the same traits as what they might associate with autism. This is why consulting professionals and doing research is so important.

If you personally do not have an autistic child, but you truly know the signs, find some way to show your connection with autism.  

If you are certain you are seeing some signs of autism in someone else’s child and you feel you should say something, I would still try to bring it back to firsthand experiences. Talk about your nephew, a student you work with, what your friend has taught you about her child’s autism; something that makes it personal, informed, and not preachy. You could give them contact information to a parent they could talk to. (You could even give them a link to this blog to learn a little! *shameless plug*)

Keep the aftermath in mind.

Remember that the goal of bringing up the topic of autism is to have the parent talk to a professional, if they decide to. The doctor/educator/therapist will take it from there with assessments and diagnosis, if necessary. If the parent decides not to talk to anyone, respect their decision.

There is a chance that you are wrong in your “assessment”. The parent might run to a doctor and the child is totally typical. This is why it’s good to discuss your own child more and let them evaluate their child. The more things you bring up about their child, the more you might have to smooth over later.

If they don’t want to have their child assessed, or you were wrong about the child, communicate your best intentions, apologize and do your best to move on and hold on to your relationship.

While I fully endorse giving gentle encouragement to talk to a professional, I urge you: Please be positive about autism! 

4 year old Jack, happy to be Jack!

Imagine that someone is telling you that your child appears to have issues. You are hurt, confused, and overwhelmed as your future is spinning. PLEASE be kind and positive when discussing another person’s child.

• Let them know that Autism Spectrum Disorder is NOT a completely horrible, unmanageable diagnosis.
• It IS a different lens through which the child sees the world. Different, not wrong.
• It may come with other issues which CAN be treated to make life easier.
• DO let them know the importance of a receiving a diagnosis. It gives direction, opens resources, and perhaps, at the very least, will give them some reassurance that maybe their parenting isn’t off; this child just needs unique attention.

The more positive we can all be about autism, the earlier one might want to know about it.

We all have the best of intentions. Early intervention is important. Feelings are important. Kids’ futures are important. Relationships are important. Telling someone their child might have autism is a balancing act of trying to open a door on bold tiptoes. Best of luck to all of us as we gently spread awareness to those around us!

>> I’d love to hear your thoughts, experiences (good and bad), and insights on this tough topic so we can learn from each other! <<