What Autism Parents Want You to Know

Do you know what it’s like to raise a child with autism? Unless you are an autism parent yourself, then you can’t imagine the struggles we autism parents go through. Teachers who work with these kids everyday for 20 years still can’t conceive the constant worry that comes with being an autism parent. Even autism grandparents, aunts, & uncles who know the child with autism, can’t truly comprehend the daily grind.

Autism Affects Us All Differently

Kids with autism are kind of like fingerprints. No two are alike. One child may do well in a regular classroom with typical kids while some need one on one support in a special education classroom. Still, other kids with autism, like my son, will never be in any classroom because the schools are simply not equipped to handle them. Just as autism affects our kids differently, it also affects us parents differently. We all have different beliefs, varying approaches to our kid’s autism treatment, and experience different struggles everyday.

I’m Simply a Dad Telling My Story

Readers of this blog can learn my story. You can read about my own struggles with meltdowns and my attempts at handling the daily stress of life with autism. I also discuss our holistic approach to my son’s treatment with an emphasis on diet. However, I’m Simply a Dad telling one story. There are thousands and thousands of other stories happening everyday.

So, What is it Like to Raise a Kid with Autism

Autism parents experience different worries, different challenges, and varying amounts of sleep deprivation. In order to help others better understand what it is truly like to raise a child with autism, I had to call on some friends and fellow autism parents to help me.

My question to my fellow autism parents was simple, what do you want others to know about autism or raising a child with autism? The 7 parents featured below are telling their own stories on their blogs. I encourage you to visit their sites to get an even better understanding of what it is like to raise a child with autism.

What Autism Parents Want You to Know

Joanna King McGowan: Holistically Whole

My son is Christopher age 9 and he developed normally for 14 months and then regressed into autism.

Autism for most families is not the autism you see on TV.

It is not a kid who is a little quirky who is a computer whiz or some other savant. It is not that socially awkward teenager who probably won’t get asked to the prom but blossoms in college. Autism is certainly not Jerry Seinfeld or some other successful celebrity who announces their self-diagnosis. It is often a nonverbal child who spins in the corner flapping her hands. A teenager in diapers who suffers multiple seizures every day. A boy who is up all night screaming and bashing his head into the wall. A family who can never leave the house together as a family because they fear wandering, tantrums, or worse. Parents who haven’t had a good night’s sleep in years. Autism can be debilitating.

It is Not Something to Celebrate

Autism is not just a different way of thinking that has always been with us, and it is not something to celebrate. There are people who will say that this means I don’t love, accept, or celebrate my child. Nothing could be further from the truth. The families I know love their children dearly and celebrate every little accomplishment; they just have no desire to celebrate the suffering of our kids. Saying that children with autism are just wired differently minimizes their daily struggles and comorbid medical conditions. These kids have real medical needs that deserve to be taken seriously.

There IS hope for those affected by autism

You’ve probably also heard that autism is a lifelong condition with no chance of recovery. While most people on the spectrum will always be affected, many many children can improve dramatically with the right support and interventions. Some children even lose their diagnosis and recover from autism completely.

For more from Holistically Whole

Joanna King McGowan writes about her journey as an autism mom at www.HolisticallyWhole.com. Her blog is for anyone aspiring toward cleaner, healthier living. Check her out.

What Autism Parents Want You to Know

Rob Gorski A.K.A. The Autism Dad

1. I’d like people to understand how it impacts people and families in real life. As my kids are younger, my experience lies there and not with adults.
2. I would like our educational system to be more Autism friendly and adjust their expectations accordingly.
3. I would like the world to gain more insight into the struggles parents of kids with Autism deal with on a daily basis as well. 

For more from The Autism Dad

Rob blogs at theautismdad.com. He writes about his experiences raising 3 children on the autism spectrum. His mission is to show others of similar circumstance that they are not alone, while at the same time, educating the rest of the world as to what Autism families can experience on a daily basis.

What Autism Parents Want You to Know

Dwight A.K.A. Autism Dad

We are Not Crazy (and yes, I do question this myself weekly)

Although, at any particular time the things autism parents say and how we may act would suggest this to others. It comes down to that we are just like you in many ways. We’d stand in front of a gun for our child. We want them to heal and would like them to live as close to a normal life as any other kid. And there is some selfishness in that we too, the special needs parents, would like more of a normal life.

We Don’t Want Your Pity

I’d be much more happy for people to ask me about what is going on with my kids’s life and show genuine interest. Listen, maybe offer some advice in any way you know. Or how about offer some talk about other things going on in life, my known interests or yours. Even some respite (could be forced too) would be nice once in awhile. But don’t feel bad for me, I got this (most of the time). I’ve been through the victim stage and it took a while to get out. I revisit sometime too but that says I’m human. We will rarely ask for help, but that does not mean we don’t need it either.

Autism is Not About Being Anti-Vaccine

I’d venture to say that over 90% of autism parents were also once pro-vaccine. We trusted our pediatricians without question and went with the herd. The process we go through, what we learn refines our education on health and our senses. It tells us to question everything that is placed in our child’s body.

For more from Autism Dad

Dwight is always traveling down new paths in search of providing the best life for his children. He shares his experiences and what he learns along the way at www.autismdad.com

What Autism Parents Want You to Know

Penny from Our Crazy Adventures in Autismland

Autism affects the Whole Family

I wish people would understand that raising a child with autism changes a family from the inside out. Autism dictates that the family dynamic evolve. Everyone sacrifices something to help the affected child. When you help a child with autism, you affect his family as well. It really does take a tribe to navigate autismland.

For more from Autismland

Meet Penny from www.ourcrazyadventuresinautismland.com. Penny is just a homeschooling Mom attempting to navigate Autismland with her teenage son with autism and the rest of her goofy family. She works to help families navigate the challenges of autism with hope and encouragement. Join her in Autismland.

What Autism Parents Want You to Know

Kate Swenson-The Mom Behind Finding Cooper’s Voice

We’re an Autism Family

When a family has a child with special needs….the whole family has special needs. As a mother to a child with severe Autism I can tell you that his disability has impacted every aspect of our life. I’ve had to explain many times to well-meaning friends/family/coworkers that I can’t simply just take a break from Autism. It is always on mind. I always have a to-do list 100 things long. And even when I do sneak away for a well-deserved break, Autism is waiting for me when I return. Instead of saying I have an Autistic son I say…We are an Autism family. It’s easier that way.

Don’t be afraid of people with disabilities.

My son is 6 and nonverbal. He is loud and chaotic and runs and darts. He may even hit his own head. These are normal actions and behaviors for him. Don’t be scared. Talk to him like a typical kid. Get down on his level. If he shows you his trains feel honored.  He is inviting you into his world and I can honestly tell you…It’s a pretty fantastic place to be.

For more from Finding Cooper’s Voice

Meet Kate. She is the mother to a little boy with severe, nonverbal Autism. Take a glimpse into their heartwarming, sad, scary, funny, loving and secret world at www.findingcoopersvoice.com

What Autism Parents Want You to Know

Alisha: The Improv Caregiver

“My Son Tries So Hard to Fit In”

There are so many things I would love to share about my son. He is incredibly clumsy, bright, funny and loving! Yes, he may have problems regulating his emotions, has a limit of sensory input he can handle, and may go into full meltdown-mode if he’s dealing with sensory overload. He tries so hard to fit in and please those around him. I worry about him being bullied all the time, and about him not being challenged enough. I wonder if I’m doing things right, or if I’m just completely shooting from hip.

Be Nice…That Means You Too Grown Ups

It hurts me to see/hear comments about how kids with disabilities of any kind are being ridiculed by grown adults. I don’t blame children for being mean at the playground. It hurts to hear people tell us that our child shouldn’t be allowed to enjoy the same activities a neuro-typical child gets to enjoy; simply because our child deals with problems other children may never have to deal with.

There are so many things I’d like to share, but the most important thing I’d like others to consider is this:

“Get to know my child first! He may just surprise you!”

For more from the Improv Caregiver

Alisha is caregiver and advocate for her combat-veteran husband & her son with High-functioning Autism/ADHD. She share the realities of life as a family caregiver and the tips & tricks she’s learned over the last few years in my role as caregiver. Read more from Alisha at wwwtheimprovcaregiver.com

What Autism Parents Want You to Know

Marcia Hinds author of “I Know You’re in There-Winning Our War Against Autism”

ALONE there is little we can do about autism…TOGETHER we will be unstoppable!

Recovery is Possible

Autism doesn’t come with an instruction manual, but when it comes with a parent who NEVER gives up, remarkable things can happen. Is recovery from autism possible? Children are recovering from autism, and yet the general public and most doctors are unaware that autism is medical and TREATABLE! That needs to change. My name is Marcia Hinds and my son was diagnosed with autism at age four. The “experts” said that Ryan would need to be institutionalized. They were wrong.

Ryan now works as an aerospace engineer because we treated his autism medically, behaviorally and educationally. I hope you will read Ryan’s story in my book called, “I Know You’re In There – winning our war against autism” You can preview it here.

When medical interventions are combined with the behavioral and educational piece, “miracles” can happen. Please know that most of the things worth doing were once declared IMPOSSIBLE, before they were actually done! Because the answer is YES. Kids can get better and recovery is possible. But these “miracles” only happen with hard work and sweat equity!

For more from Marcia

Marcia Hinds is a DIY Autism Parent, Ryan & Megan’s mom. Her passion to spread the word that autism is treatable is unmistakable. She is on a mission to change the face of autism…one child at a time. Read more from Marcia at her blog www.autism-and-treatment.com or pick up her book here.

What Do I Want You to Know?

I had not intended on having my own thoughts in this post. However, when I was preparing to write this piece I made an interesting observation. If you visit the blogs of my fellow autism parents, you might make the same connection I made.

Autism is a Medical Problem

Each and every family represented here are not only affected by autism, but they all face some type of medical challenge as well. Some of us even face a variety of issues. Whether they have decided to seek out an alternative, holistic path for treating their kid’s autism, or if they have stuck with traditional medical treatments, they all are experiencing real medical troubles.

It was not my intention to find autism families also affected with comorbid conditions. (comorbid = the presence of more than one condition/disease) It just happened to work out that way. Although, I’m not surprised as comorbidity is very common for kids with autism.  Perhaps, it’s time for the mainstream medical community to start pushing for research and seek out answers on this. What makes these kids so much more vulnerable than their typically developing peers.

Do you Have a Better Understanding of What it’s Like to be an Autism Parent?

I hope the insights from my fellow autism parents help give you an idea of what it’s like to live with autism.  Of course, reading an article online can in no way communicate just how it feels to only get 2 hours of sleep for 6 weeks straight. It can describe the powerless feeling when we see our kids in such pain they throws themselves into walls or bang their head on the floor. Conversely, there’s no way to describe the way our heart swells when we see their beautiful smile headed our way. Autism parents are not all that different from any other parent. We love our kids with everything we have, and we would give anything just to see them happy.

Did this article shine a light on autism for you?

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