The Diagnosis

After a lot of hours worrying about your toddler or preschooler possibly having autism, you took action.  So you set up and went to all of the appointments.  Then you completed all of the paperwork.  You finally got back the report from the psychologist.  And now, your child has an autism diagnosis.  You’ve spent a lot of time learning and researching the latest topics and types of interventions.  You’re scheduled to meet with your child’s preschool teacher next week to figure out a plan. You have a big, long list of things to do related to your child’s diagnosis including talking to your family about your child’s autism diagnosis.

It can be stressful.  Maybe a little scary (What are they going to say? Will they be supportive?)

But guess what?

I’m going to tell you the ONLY thing that you need to say when you’re ready to talk to your family about an autism diagnosis.

WHATEVER YOU WANT!

You can spill out every last piece of information you’ve learned, all of the therapies and services your child will be starting, as well as information about medication, school, sleep issues, sensory issues, and behavior challenges your child is struggling with to your family and friends.  For some families, it helps them to process the information and to have all of their friends and family knowing what’s going on and the next steps.

OR…

You can take a “need to know” approach.  You have decided discuss your child’s autism diagnosis with his/her pediatrician, school, and other caregivers.  You’ll have the conversation with family and friends when you are ready.

YOU DECIDE THE APPROACH THAT’S RIGHT FOR YOU AND YOUR FAMILY!

As a special ed teacher in early intervention, I have spoken to dozens and dozens of families right after their child was diagnosed.  They personally have to decide what’s right for them.

Spill the Tea or Keep The Info Close?

I had to decide what was right for me and my son.

Through my years as a teacher and talking with other parents of kids with special needs I found a few commonalities with those that chose to be more private.

Here are a few reasons a lot of families choose to take more of a “need to know” approach:

You’re still trying to process and sort out your emotions and reactions about the autism diagnosis.

Most of us did not plan on having a child with special needs.  We thought we’d just have to worry about sleeping through the night, toddler tantrums, and potty training as the biggest challenges before preschool.

When a clinician tells you that your child has a diagnosis, it might take a while to figure out how you feel about it.  And that is 100% ok!  Don’t let anyone tell you differently!

Absorb the information.  Ask follow-up questions.  Take time to think about your feelings.

I don’t pretend to know what it feels like to have a child with autism, but I do know the mixed bag of emotions that I felt when my son was diagnosed with ADHD.  It was a relief to know there were reasons for his behaviors and struggles, but I felt sad too.  I felt like his life was going to be so much more difficult.  And would he be able to do all of the things that you hope for your child as they grow up and become adults?

You want to get more information about what’s available for your toddler or preschooler (school, therapies, behavior specialists, etc.) and get that started first.

Many parents (myself included) just want to get things figured out first.  I wanted to make sure that my son’s teachers were aware of his diagnosis so we could start the special services process started with his school.  I read A LOT about ADHD so I knew what I needed to do at home to help my son as well as what the school should be doing for him under the law.  There was also the issue of medication we needed to get squared away.

You just know that having the conversation with (fill in family member’s name here) is going to be difficult.

“Everyone’s a little ADHD!”

“ADHD is made up and just due to bad parenting.  That didn’t exist when I was a kid.”

“I can’t believe you are medicating him!”

“Oh my goodness!  I’m so sorry!  That’s awful!”

People I know said these things to me.  To my face.

You may have heard something similar or been afraid of hearing something similar coming from a loved one.

I was fairly comfortable sharing my son’s diagnosis with friends and family, however, I knew there would be people in my life that I didn’t want to talk to right away about it.  So I didn’t.

Autism (or any other diagnosis) is part of your life but it isn’t your whole life.

In the special needs community, we talk about something called “people-first language.”

What does that mean?

It means that when speaking about someone with a disability you put the person first and then the disability.

For instance, “My daughter has autism” vs “I have an autistic daughter.”  You could also say “I work with a little boy with Down Syndrome” instead of “I work with a Down Syndrome boy.”

We do this because — special needs or not — we are talking about a person first and foremost.

And like “people-first language” oftentimes families want to be a family first.  Or mom wants to be a mom.  Families want to still think of their son with autism as their son first.

Constantly having to be the “mom who knows everything about ADHD/autism/special needs” is exhausting.  ADHD is not my life.  And it’s not my son’s life.  It’s part of our life!

Having your child’s autism diagnosis be part of your life but not every topic of conversation is up to you!

If you want to tell everyone about your child’s autism diagnosis, you are not alone!

If you only want to share your child’s diagnosis with a small group, you are not alone!

My Lessons Learned

I’ll share this from my own experience:

1. Always share important information with your child’s doctor and school.  They need to know about medication changes, behavior changes, diet changes, sleep issues, etc.  It’s critical for them to know this information so they can best support your child.
2. “Action alleviates anxiety.”  I heard this quote on a podcast not too long ago and it’s true!  When I could focus on the actual steps I needed to do to help my son, I felt more hopefully and less stressed.  I would still feel sad or worried or frustrated but taking steps towards our goals made me feel a lot better.
3. Find your support system.  Being a parent of a child with special needs can be very isolating.  It can feel like you are the only one who has a child that isn’t talking, isn’t doing well in school, won’t play with other kids, can’t go on vacation, etc.  When you’re ready, find someone you can talk to and who will support you.
4. Focus on what your child’s strengths are right now.  It’s natural to focus on what your child isn’t doing.  Their teachers and other professionals will do this too.  But find at least 2-3 things that your child is doing well with right now.  Is your child a great eater?  Sleeps well?  Loves playing bubbles with you? Has the best smile while rough housing with dad?  What’s going well now?

And lastly, ignore other people’s criticism!  Don’t spend your energy and time defending the decisions you make for your child.  You’ve spent the time looking into the right therapy or medication or school for your child.  You know your parenting didn’t cause your child to get this diagnosis.  You know your child best.

So when the stranger in the store (or maybe someone a little closer to you) wants to tell you what you should be doing instead, just ignore it!  Walk away!

I give you permission!!!  🙂

Talking to your family about your child’s autism diagnosis can be challenging but you get to decide the timeline and how much information you feel comfortable sharing.  Take some time.  Gather your thoughts.  Share when you’re ready.