Autism Awareness: Involving Other Parents and Children

Autism Awareness Month is upon us and there is still so much work to do as a society. I am the first to admit that prior to becoming an autism mom myself, I knew very little of what it meant. I won’t say I considered myself naive, per se. But the subject never went beyond “be respectful and smile.” I feel awful thinking back on that now. But the truth of the matter is, there simply isn’t enough information out there.

Amongst the autism community, there are resources from some non-profit organizations and some really great support groups on Facebook. But there are criteria that need to be met. And not everyone qualifies. It seems to address and only include “us.” I have yet to see a training or webinar or anything on how to address autism awareness amongst everyone, no matter the relation. Including my friends, my friends’ kids, or even distant family.

As a newly special needs mom, I felt alone, isolated, and even embarrassed of my son’s diagnosis. Although some autism groups and trainings are helpful, our friends and family need to be included too. I am one of the only special needs moms amongst my closer friendship circle and they want so badly to be included and to be a part of my son’s journey. Pride and fear may get in the way of letting others in. But I recently released that all and reminded myself that I need these people and the world needs more awareness. 

INVEST IN ANSWERS AND QUESTIONS

This was probably the hardest concept for me to overcome. I had a million questions myself and I did not feel equipped to answer their questions. But I decided to start writing out my own questions and even jotted down some of theirs. I made sure to bring them along to all of my son’s pediatrician and neurologist appointments so I didn’t forget. I learned that writing everything out helped serve my memory. And I was able to answer loved ones’ questions with a little more certainty. 

Once the conversation came up (because it will), AUTISM MOMS: be open and candid. FRIENDS OF AUTISM MOMS: be open and candid. Yup. You read that right. Come to terms that if people are going to love on a child, they need to know about that child. 

REMIND YOUR CHILDREN THAT AUTISM IS NOT A BAD WORD

I still struggle with this, but it’s a work in progress. Like I mentioned earlier, my friends want to be apart of this journey and that includes their kids as well. Children with autism vary in different abilities. Some may talk, others may not. Some may cry more, others may laugh at inappropriate times. Some may need to be approached to play and some may still be working on boundaries. Just like “neurotypical” children differ, so do our kids on the spectrum.

I was caught off guard one day when my friend’s 5-year-old daughter asked me why my son didn’t talk or want to play with her. I gave the best answer I could: “JJ is still trying to find his voice.” Not a lie. But it didn’t really answer her question and that was the moment that I realized that I was struggling with coming to terms with his diagnosis. I asked my son’s speech therapist if this was the correct response and she looked at me and said, “You know autism isn’t a bad word right?”

Talk about a load of mom guilt! AUTISM MOMS: Learn how to explain to everyone and anyone that your child is just like everyone else, they have autism and they learn differently. They look normal because they are normal. FRIENDS OF AUTISM MOMS: Try to have this conversation with your children prior to a play date or event. This will help reduce stares, awkward conversations, or more questions that lead to more questions.

AUTISM IS NOT TABOO

Autism Speaks is one of my favorite resources to share with my friends and family. I encourage you if you know or love someone who has autism to check it out. Autism is a little more common than you would think and the website has so many resources and information. I think if you really think about it, you probably already know someone or of someone with autism. The word or the diagnosis should not be taboo. It should be learned amongst us all so we can understand this population a little bit better.

BOOK RECOMMENDATIONS ON AUTISM

I also learned that there are a bunch of children’s books that help illustrate autism at an age-appropriate level. You can pick these up at our local library:

• Autism, by Ann O. Squire
• Andy and His Yellow Frisbee, by Mary Thompson
• I See Things Different: A First Look at Autism, by Pat Thomas
• Why Johnny Doesn’t Flap, by Clay Morton & Gail Morton
• I Have a Question About Cancer: Clear Answers for All Kids, Including Autism Spectrum Disorder or Other Special Needs, by Arlen Grad Gaines and Meredith Englander Polsky
• Ian’s Walk: A Story about Autism, by Laurie Lears
• The ASD and Me Picture Book: A Visual Guide to Understand Challenges and Strengths for Children on the Autism Spectrum, by Joel Shaul
• How to Build A Hug: Temple Grandin and Her Amazing Squeeze Machine, by Amy Guglielmo and Jacqueline Tourville
• Isaac and His Amazing Asperger Superpowers!, by Melanie Walsh

REACH OUT TO THE AUTISM MOM IN YOUR LIFE

When we embrace each child’s differences and support other moms we create a community. Our kids learn to love by our actions. There are no two children who are the same. And a diagnosis is simply that: a diagnosis. Reach out to that autism mommy in your life that may be juggling therapies and motherhood. We are always in need of a friend.