Everything I THOUGHT I Knew About Autism

Before Raelyn was diagnosed with autism, I thought I knew a good bit about it. My husband and I are both well educated nurses, and are pretty familiar with most medical/neurological conditions. I was so wrong. Like most people who haven’t been affected by autism, I had a very misguided understanding of this complex condition. I have created a list of everything i THOUGHT I knew about autism before it became a way of life for my family.

1. People with autism don’t show affection & can’t form relationships.

This is one of the most common misconceptions of autism. This is also the number 1 reason it never crossed my mind when it came to Raelyn. Society believes autistic people don’t show affection, simply because they don’t show it in a “typical” way. Raelyn doesn’t like for people to touch her unless SHE initiates it. When she offers a hug, a kiss, or a snuggle, the bond is unbreakable. It takes her longer to warm up to people, but once she makes a connection with you, she will love you forever.

2. It’s obvious to tell if someone is autistic.

photography by Ciyeva Lafaye

A lot of people think that people with autism spend all their time flapping their hands, rocking back and forth, spinning in circles, and avoiding eye contact. No. It is true that people on the spectrum share certain traits: stimming, needing routine and order, and atypical social interaction. However, the way they manifest these traits can range from extremely mild to very severe. If you were in a room of 100 people and 20 of those people were autistic, I guarantee you that you wouldn’t be able to identify more than half of them. Many autistic people are very functional, and their stims are used mainly in stressful situations. There are others who basically spend all day stimming and are completely nonverbal. Most people on the spectrum fall somewhere between these two extremes.

3. If your kid makes eye contact, they don’t have autism.

WRONG!! You would think it would be very obvious to know if someone makes eye contact with you. But if you don’t know what you’re looking for (like me), you may totally miss it. When Raelyn was a baby, she would look at my face, in the general area of my eyes. I assumed this was eye contact, but it wasn’t. It was as if she would look THROUGH my eyes, rather than engaging in a social way. Other times she would look over my shoulder, and had me convinced she was straight up seeing dead people. She has been in therapy about 9 months, and now she makes wonderful eye contact!! I didn’t realize how little eye contact she used to make until recently. So just because a sign isn’t overtly obvious, it can still be a significant red flag.

photography by Ciyeva Lafaye

4. Autism meltdowns are just part of the diagnosis.

Yes, with autism comes dreaded meltdowns. But what most people don’t realize is that there is so much you can do to 1. prevent meltdowns and 2. help someone cope during a meltdown. Nine months ago, Raelyn was having multiple meltdowns a day…I’m talking ear piercing screaming and thrashing around for half an hour, because she couldn’t reach a toy she wanted.

The smallest things would set her off and I was desperate for a professional to help me make sense of it.

The combination of speech therapy (to teach her to communicate her needs rather than pitching a fit), occupational therapy (to help with sensory integration and self regulation), and ABA (to teach her socially acceptable ways to communicate her needs…she used to bite me or pull my hair when she wanted something) have been life changing for our entire family. She now knows how to communicate her basic needs, she isn’t as bothered by extreme sensory input, and we have replaced negative behaviors (biting) with positive ones (grabbing my hand when she wants something).

I have learned (and I’m still learning) how to avoid meltdowns. I make sure she gets plenty of sensory input by letting her jump on the trampoline and going up and down the slide. When I know she wants something, I give her two choices to choose from. It gives her some control of the situation, and helps her stay calm. I now know

photography by Ciyeva Lafaye

that I can’t take her out all day to run errands with me and expect her to be on her best behavior (duhh..I mean why would anyone expect that out of a 2 year old?!) She has to be able to run around every 30 minutes or so, and when we go out to run errands, she has a 2 hour maximum before she wants to go home.

5. Autism parents MUST stick to a rigid routine.

Routine is essential for people with autism. There are many autism parents who absolutely must keep the exact same routine every single day, or all hell breaks loose. Well, here’s the thing…I’m the most unorganized, impulsive, and sometimes forgetful person there is. Those qualities aren’t very compatible with a strict schedule. I knew I physically wasn’t capable of abiding by a rigid routine.

So I compromised.

We have a “flexible routine.” We wake up around the same time every day, Raelyn has her two scrambled eggs for breakfast, she has therapy at 8:30 on Mondays, Wednesdays, and Thursdays, she eats lunch around 12:30, naps around 1:00, takes a bath around 8:00 and is usually asleep by 9:30. Tuesdays we leave for school at 8:00 and on Thursdays, we leave as soon as speech therapy is over. These are the things that don’t change. But during those blocks of time where we don’t have something “planned,” we just wing it. Some days we go to the park, sometimes we have friends over, I may take her to Gammy’s house, or we may just stay home and play.

At first I felt really guilty about not being able to adhere to a strict schedule. Trust me, I tried. And failed miserably. I felt like such a failure. But then it occurred to me that although she is autistic, I am not going to let that hinder her ability to function in the world. In life, shit happens, and sometimes you just have to roll with the punches. If she was used to doing the exact same thing every day and something unexpected came up, it would be cruel to make her adjust to the stress of disrupting her routine.

My number one goal in life is to prepare my daughter for the future.

All that any parent wants is for their children to grow up to be independent, strong, successful, caring people. I would be doing her a disservice if I restricted her to doing the same thing every day. Don’t get me wrong, I admire the parents who are able to stick to a rigid routine. It has been proven that this significantly helps people with autism. It just wasn’t suitable for OUR family. I have found a good medium, and what I am doing is working just fine. We still have those days that seem to never end, but they are becoming few and far between.

I hope this post has helped clear up some misconceptions about autism. Follow us on Facebook at Autism Through Raelyn’s Eyes and send me what you THOUGHT you knew about autism!

Click here to read my post, “Autism: How My Instincts Screwed Me Over.”