When the Autism Checklists are Wrong

I like to talk about common misconceptions surrounding Autism because I was lead astray by well-meaning friends, loving family members, a guilty, worried conscious, and the damn internet. I like to talk about it because I was so confused. And lost. And scared. And I was so desperate for my son to NOT be autistic that I believed anything I read on the internet…or that was told to me.

I want to say that no friend or family member (unless they are a trained medical profession) can diagnosis Autism…or not diagnosis Autism.  I really do believe that a parents intuition is usually right as well. I often wonder if any parent is TRULY surprised with their child is diagnosed? Can it really be that big of a shock? I guess I don’t know. by the time my son was actually diagnosed I was well versed in Autism. I was obsessed actually.

Autism Checklists

When Cooper was two I became obsessed with Autism checklists like this one. I can still see my 29 year old self. I’d always google about Autism late at night. I’d search for something like….’nonverbal at age two.’ And every result would be about Autism. My stomach would drop. And then I’d end up on some checklist, quiz thing. And I would answer truthfully. Yes, he points. Yes, he waves. Yes, he’s social. Yes, he makes eye contact. And it would say he wasn’t Autistic. I would breathe the biggest sigh of relief every time.

I trusted those dumb lists. I took every single one to heart. I relied on those checklists.

I became obsessed with all the reasons why my son was NOT Autistic. I think deep down I was so scared that my son WAS Autistic that I believed everyone that said he couldn’t be. In a way I was drawn to them. I loved people that wanted to talk about how my son was NOT Autistic. It comforted me. It gave me hope. And it lead me astray.

Autistic Children Don’t Wave

Before my son was diagnosed…and even after I guess…I was told so many bizarre things about what people ‘thought’ Autism was. According to some well meaning people, children with Autism never wave. Or smile. Or laugh. Or point. Or interact with others. They don’t have loving connections with blankets or stuffed animals. They don’t like people. They rock in corners. They are aggressive and dangerous. They are unhappy. They don’t make eye contact. They are withdrawn.

Someone told me all Autistic kids hate tags on their clothes. And the feeling of grass or sand. They hates baths and having their nails cut. I was even told Autistic babies don’t clap or do ‘so big.’

I have heard everyone of these Autistic facts numerous times. So, you can imagine how confused I was. At age two my son really was quite ‘typical’ by the Baby Center email guidelines. He made eye contact like a rock star.  He laughed, pointed, smiled, and waved. He’d see a birdy or an airplane and get my attention. He loved his trains and his blanket. He didn’t rock in a corner. He wasn’t miserable. Yes he flapped…but not obsessively. It was more out of excitement. That couldn’t possibly be Autism.

The checklists rely on these ‘typical’ Autism markers. So Cooper passed with flying colors every single time.

I became so good at justifying. I’d say…oh, he does this…BUT….

But My Baby Plays Trains

A friend swore she heard somewhere that Autistic kids never play with toys (she heard this from a nurse). And she knew Cooper loved playing trains because I shared pictures on Facebook of our family ‘playing.’  What she didn’t know was Cooper was obsessed with trains and how they went in a circle. He was rigid and intense.

Yes, Cooper loved ‘playing’ trains. Therefore, he wasn’t Autistic. When really he obsessed over his train track to the point where he would meltdown and have to be separated from it.

In reality…Cooper didn’t play at all. I can say that now. But as a new mom I didn’t really know the difference. Or I wasn’t ready to really SEE the difference.  And look how cute he was in his train hat. If only this picture could share how stressful these times truly were. No one could touch touch the trains. And yes, I was there…but not for playing. My sole purpose was setting up the train. That is it. His Thomas the Train track became a point of stress in our home. Eventually we had to actually hide the trains because they were causing him so much anxiety.

Just like my son’s ‘playing, the rest of his Autism traits were hidden to the outside world. As his mother…I knew though. I saw the subtle signs. He hated being touched by others. He flapped when he was excited. He’d push strollers for hours. He refused to play. He had zero imaginative play. He never sat down. He never spoke.

Nine Months Old and Television Obsessed

By nine months he was watching television obsessively. It became the only thing he could do. But, I didn’t share that on Facebook. I didn’t tell people. I felt like a failure. We went to a cabin once and four of the five children swam, ran, roasted marshmallows, built forts and got dirty. My son sat in the back of our car and watched a movie on his iPad. I felt like the biggest failure. No matter what we were doing he needed technology. It started small…with PBS kids. And then graduated to an iPhone. Soon he had his own iPad. And then three Kindles. BUT…the Autism checklist asked about joint attention. Well, Cooper had it. He was always showing others what was on the screen. The question failed to ask if he only cared about ‘their’ favorite things. It

My Son is a People Person

Another big question on the Autism Checklist is about your child’s relationships with other people. It alludes that Autistic children don’t like people. They isolate themselves. They don’t socialize. I was so confused by this and took pride in the fact that my son loved people. He always has and every year he seems to love them even more.

Someone would come to the door of our home and Cooper would crawl, toddle, and eventually run to greet them. He would stand at the window waiting for visitors.

I’d tell myself…my son loves people…so therefore, he is not Autistic. In reality, most autistic children are quite social and interact with adults. Where they typically struggle is with other children. The checklist failed to ask this.


Autism and Peers

My Autistic son doesn’t even see children. It’s like they don’t even exist in his  mind. He doesn’t hear them or see them. Or at least pretends not too. I asked his therapist about this and here was her response: Children are unpredictable. Most Autistic children love adults because we serve a purpose. We do things for them. We react in a calm way. We help and we give love and praise. We are authoritative.

A child is not. They have no consequences for their actions. They have confusing behaviors. They are loud and rammy. They are children. At age six my son is just now noticing his brother. Prior to this year he looked right through him.

The checklist never asked this question. So yes, my child loved people. And I thought this meant he couldn’t be autistic. When in reality. The truth is…most Autistic children don’t like other children.

It’s fascinating stuff.

What’s my point?

Trust your gut. I was so worried about my son being Autistic that I internalized a lot of it. I was scared to say it out loud because then it might actually be true. So I’d Google late at night. I’d frantically search blogs for other children like Cooper that were NOT Autistic. It gave me comfort. It brought me peace. Deep down I thought I could outsmart Google and every checklist I found. I couldn’t though. I wasted a lot of time running from Autism.

By the time my son was diagnosed I wasn’t surprised. At that point I was practically an expert. An obsessive expert.



Prev post: I Never Lost My Son…In A Way, It Felt Like I Never Had Him.Next post: Educating Police Officers About Autistic Behaviors

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!


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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.

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