I saw a meme on Facebook last night. It said, It’s wonderful that autism is a gift for you, but respect that my experience is different – Just like our kids.
I immediately stopped scrolling to look at the comment section. It’s always interesting to read what other parents think about this topic.
Some of the parents hailed their child’s autism as a wonderful gift, insisting they wouldn’t change it for anything.
Others argued that autism was a disease, and that their children were sick. Of course they loved their kids, but they would cure them in a heartbeat if they could.
So which is it? Is autism a gift, or is it a curse?
I say it’s neither.
And although I can empathize with both points of view, I’d like to share a different perspective…
I’m a mom of autistic twins. If the spectrum were a straight line (which it’s not), my boys would be sitting on opposite ends of the stick.
D, my oldest twin, has incredible splinter skills, with deficits in other areas. He’s outgoing, but struggles with attention and coping skills. He’s great at math, but he learns english as if it’s a foreign language.
He taught himself how to use the Xbox when he was four years old, and has been playing Grand Theft Auto (GTA V) ever since. I’d be appalled if he wasn’t so good at it.
I can feel you judging me, but I really don’t care.
J, my youngest, is mostly nonspeaking. Last year, he started using an AAC device to communicate. His needs are extensive across the board.
We have to work hard every second of the day to simply keep him safe. He’s also the silliest, sweetest kid you’ve ever seen.
Back to the topic. I don’t see autism as a gift or a curse. My kids are who they are, and being autistic is an intrinsic part of them. Whatever feelings I place on autism will only change how I experience it (and ultimately how my kids will start feeling about themselves).
If I feel sad or depressed about autism, that’s what it will be – sad and depressing. If I feel like autism is a gift, well… you get the picture.
Did I mention I also have two teenagers? My experiences raising them adds a whole different layer to my perspective.
My older boys are neurotypical. But that doesn’t mean my job is easier with them. It’s just different. They each have their own set of individual needs.
In addition to being teenagers and all that encompasses, one of them is severely allergic to peanuts (and everything else you can imagine). To top it off, he also has severe, acute, and chronic asthma.
The last time he had a little cough, it turned out to be a severe case of pneumonia, and one of his lungs had solidified. I’d stick him in a bubble, but his brother doesn’t want to roll him around. 😉
Do I hate his lungs? No. That wouldn’t do any good. Those are the lungs he has, so I just work hard to support how they function.
I take him to doctors and specialists. I give him medicine to help ease his symptoms. And I listen for his little cough. All. The. Time.
Placing a negative feeling on his asthma won’t help him or me. If anything, that would model a negative attitude for him. He may even start to feel like a burden because of something that’s not even in his control.
My point is that it’s all relative. While my twins are struggling in many areas, there are some children who can’t even leave the hospital. And others who have less than a year to live.
I’m not making light of the more serious aspects surrounding autism. Many children suffer from seizures and other co-morbidities, which are undoubtedly traumatizing.
I’m just arguing that our attitude or approach to these circumstances can change the way we experience them. Yes, I get frustrated. I even cry sometimes because I get so overwhelmed.
Parenting is hard. Parenting children with disabilities is hard. Parenting autistic children is hard – and confusing.
But continuously having a negative attitude about this one condition – that is such an integral part of my children – will only make me miserable. And my kids will undoubtedly pick up on those feelings, whether they can express it or not.
As a writer, I follow countless bloggers, vloggers, and authors. I’ve seen every perspective out there.
It pains me to see public figures using their platform to continuously talk about their own disappointment and grief surrounding their child’s disabilities.
I’m not referring to people who vent every now and then. And I’m not talking about people who toss around ideas and start important conversations. Those things are essential for increasing awareness, understanding, and acceptance.
But parents who are new to Autismland can supply their own frustrations and heartache. They don’t need help adding to that.
These parents already know that it’s not a walk in the park. They can join private support groups to vent and validate those feelings.
What I really needed as a parent new to the world of autism was hope. I needed information and resources. I needed humor, and a sense of normalcy.
I needed perspective and advice from seasoned parents and actually autistic adults to help me sift through the information and misinformation surrounding autism.
If you’re a parent who’s just starting your journey, remember… It’s okay to have rough days. It’s okay to grieve the perfect life you thought was in store. But don’t stay there.
Pick yourself up. Life is a journey. You get to decide how you react to its twists and turns.
Talk to a therapist to support your own mental health. Work hard to find the support you need, online and in your own city. Realize that you’re not alone. With an average of 1 in 59 children being diagnosed, you can find your tribe.
Start following autistic bloggers and pages. Join an autistic led group on Facebook to ask questions and learn about your own children. My favorite group is Autism Inclusivity.
Read books written by autistic authors. I recently started a book club on Facebook to learn about and discuss topics related to autism. It’s called That Au-Some Book Club. I’d love for you to join in the discussion.
And steer clear of negativity. Misery loves company, and there’s just no time for that.
Autism isn’t a gift. And it isn’t a curse. It’s just part of your journey. Your attitude and mindset WILL make a difference as you go through.
Follow our journey on Facebook at Not an Autism Mom.