An Open Letter to Family and Friends of Autism
“If you have met one child with Autism, well, you have met one child with Autism”.
While these words perfectly sum up the complexity of Autism, they are limited to the diagnosis itself. These words do not speak to the needs of parents. Needs which are critically vital to the health and mind of those gifted with the responsibility of caring for someone on the spectrum.
Every parent needs the support of loved ones. Special needs parents however, need both support and a level of understanding not found in “typical” households. This higher level of support extends to grandparents, siblings, cousins, friends, aunts, uncles, co-workers and more. A smile and random phone call is nice for many parents, but what these parents need (and often hope for) is a true understanding (even an attempt) of the responsibilities of raising a special needs child by loved ones.
I know. I am one of them.
Autism is not like a common cold where a few pills can help. Autistic children are not pets you can leave inside. Autism knows no age limits (yes, older people have it also). Autism is not something every “professional” understands. Autism is different for everyone – all those on the spectrum are unique. Parents and/or caretakers living with Autism have a complex need and desire to find support and have others relate.
Special needs parents know the personal challenges all too well.
The loss of friends, the strain to relationships, family members who don’t understand, acquaintances who suddenly disappear, teachers who blame bad parenting skills, strangers who judge, the cruelty of other children and more. Lucky parents have amazing (or at least decent) support systems. Many others often feel like they’re raising a child on an island.
Five years ago, my world changed when my son was diagnosed with Autism. So did my view of everyone around me. I have seen incredible kindness from strangers, extreme ignorance from “friends,” unconditional love from unexpected people, the best in teachers, the worst in teachers, financial motivation of “professionals,” brutal honesty from loved ones and more. This entire journey has allowed me to grow in ways I never thought possible.
First and foremost, my son is my world. He is the single most important thing to me, and always will be. He has taught me more than I could ever teach him. His autism is not a disease, not a virus, not something toxic. His joy, his love of life, his charm, his laughter—all of this is the autism I see.
But I am human. I am not perfect. It took time for me to get here. Once my eyes opened, I saw someone who would change my life forever. He also changed my perception of humanity.
That screaming child on the airplane whom I previously wanted to scream back at?
Today I would gladly sit next to that child and have them scream in my ear for a 14-hour flight so their Mom (or Dad) can have some rest.
That “annoying” child flapping his arms around and making weird noises in the movie theater?
Come sit next to me: I’ll buy you popcorn and laugh with you for hours at a scene I don’t even understand. You are amazing.
That non-verbal teenager who will never listen to anything he’s told?
Let’s be awesome together and play with crayons, drawing undecipherable images for days. I’m in.
That Mom or Dad who is trying to hold it together while their child loses it in Target since he dropped a sock?
Mom, Dad. Don’t worry. I will get on the floor and make funny faces and drop a whole row of clothes on me to make him laugh while you both go for a 5 or 50-minute break. You are heros.
Almost nothing annoys me anymore—except for people who do not (even attempt to) understand.
Most people live in a bubble.
A bubble of comfort, a bubble of expected privileges, a bubble where “first world problems” seem to be more important than decent humanity at times.
For the most part, I don’t blame anyone. I used to be one of them. Many have paid their dues raising their own children; some families have saved for years to go on a “peaceful” dream vacation; some friends didn’t see you the way you saw them. However, for those who have people they love raising or taking care of someone with special needs, then it’s important to try and understand—truly attempt to understand—the challenges they’re facing.
How can you find out what these challenges are?
Ask Them. Be Direct.
Ask direct and specific questions like: “Have you seen an Autism specialist?”; “What did the doctor say about his rocking?”; “Have you had his eyes checked?”; “Has the teacher ever told you what he likes in school?” Be specific. Don’t limit your questions to generic words like, “How are they doing?” Your loved one is likely way too tired to respond with anything more than, “They’re doing good.” Basically, another wasted moment of politically correct conversation that didn’t help. Also, never say, “That’s what all little boys or girls do.” These words will likely shut you out of ever having someone open up to you again.
Truly offer help. Don’t just say, “If you need something, let me know.”
Many special needs parents have a hard time letting go and asking for help. This is not because they don’t want to or need help—it’s because they literally don’t have the energy to explain everything required for you to actually help. Trusting your child with a babysitter for a date night, and being able to actually enjoy that date night without thoughts of war at home, is a task very few people will ever master. (They really should find another name for date night for special needs parents—“temporary leave” sounds better to me.)
Read and Learn.
Trust me, it’s scary when you first start reading about any special need. Now imagine how your loved one feels being years into this. They probably have Google nightmares at times.
Just show up. That’s half the battle.
No child was ever raised without a community. And if you want to understand how your loved ones are dealing with special needs, then you need to become part of the community.
The responsibility is on you, and you alone, to take the first step. You might even have to take a dozen steps to break through. Most parents want help even if they say they don’t. Sometimes the challenges are just embarrassing to talk about, other times they are trying to show you they are strong. There are also many times when some parents simply cannot find the words to ask for help.
People change. People adapt. Your loved one is showing you how strong he/she is. Maybe it’s time you do the same.
When you do, the rewards will be much greater than you can imagine.
I know. It happened to me.
A Special Needs Dad.
A Very Proud Special Needs Dad.
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