So you’re wondering if your child might be autistic. I know. I’ve been where you are sitting right now. Searching the internet for signs of autism spectrum disorders. Going back up to the search bar to enter a different set of keywords, hoping to find some other site that will assure you that these strange behaviors your child has been evidencing are perfectly normal. Telling yourself he is just a little behind. Sharing your worries with a friend or family member, calming down for a day or two after being reassured by them that, no, it isn’t autism. And now you are wondering if you are just being paranoid. You’re worried that you might be borrowing trouble that you don’t need and possibly stigmatizing your child with a label that will follow him around for life. Yep, I’ve been there – and quite recently.
What does autism look like in a young child? Well, the important thing to remember is that, just like everyone else on the planet, every autistic child is a unique person. There are common behaviors that they share, but a child can still be autistic and not share every common autistic behavior. Remember that. Because getting hung up on that can make you fool yourself. Autism spectrum behaviors do not exist in isolation. Just one of them won’t make a child autistic. But you put several of them together and you’re possibly looking at an autism spectrum disorder of some kind.
The one that seems to be noticed first amongst the greatest number of parents is a concern that your child might have a hearing problem. I honestly don’t know anyone with an autistic child who hasn’t worried about this. I’m sure there probably are some. I’m just trying to tell you that a concern about a hearing problem is really common. You might notice that, despite calling your child’s name repeatedly, that he doesn’t respond.
You might also worry that he has some kind of persistent ear infection. Why? Because you might have noticed your child repeatedly covering his ears. Especially if it is noisy or chaotic. You have probably taken him to the doctor, only to be told there is no infection – perhaps more than once.
You may notice that your child doesn’t seem to know how to play with toys correctly. Instead of rolling his little truck around (or kissing her baby doll), he just sits and repeatedly spins the wheels. Or bangs the baby doll, over and over and over. And over some more. He might fixate on a toy that isn’t a toy – such as a plastic hanger, a spoon or a string, or a button on your shirt. You’ll try to interest him in something else, and he’ll drop it and go right back to the non-toy.
You probably bought him a lovey of some sort. You may notice that your child doesn’t have an attachment to any sort of stuffed animal or blankie. Instead, he just might carry around that plastic hanger everywhere he goes.
He probably at one point was a good eater for you. But suddenly, you may start worrying about all the foods he will no longer eat. He may have once loved bananas, but now won’t touch them. He might begin to refuse everything but dry foods like crackers or chicken nuggets. He may consent to eat only one food period. And withholding food a little longer to make him hungry won’t work. He’ll just cry and stay hungry until he gets the only foods he will eat.
Your child may not show affection in the same way as other children. You might find him squirming away or resisting being cuddled. Or you may find the opposite. He may have strange ways of loving all over you, rubbing his arms and legs all over you, maybe even strangely wanting to run his mouth all over your arm. His odd ways of handling touch may also include an aversion to touching things that are wet, or gooey, or crumbly. Or you may find him smeared all over with anything spreadable he can get his hands on, rubbing it in over and over again.
You may have noticed that your child does not point to what he wants. This is a big red flag. He also may not ever bring anything to your attention, like a toy or the stars. In fact, you have may have noticed that he doesn’t attempt to share your attention, like turning to see if you saw Elmo do that silly thing. And, if you try to point something out to him, his eyes might not follow the direction in which you are looking and pointing.
You might be losing a lot more sleep than you did with your first child or what your loved ones told you was typical. He might not have ever settled into a sleeping pattern and may continue to wake you repeatedly each night.
The thing that might be worrying you the most is that he either isn’t talking or that he stopped saying the words he used to use. He might not be saying single words such as mama, daddy, ball, juice, etc. by 18 months. Even more disturbing is that he might not try to communicate with you in other ways, such as taking your hand and leading you to what he wants. He might be delayed in other ways as well, such as crawling, walking, using a spoon, etc. When he does walk, you may notice that he prefers walking on his tiptoes.
And, you just might have noticed something strange he is doing with his arms. It looks a little like that hand flapping that people do when they bite into something that is way too hot. Except he does it a lot. Especially if the TV is on. He may just flap away. And stop. And then flap again. And maybe moan or grunt in his excitement. (Please don’t try to stop him from his flapping. If he isn’t autistic, he’ll stop one day. If he is, you are trying to stop a mockingbird from singing. It is simply how he expresses his excitement. You’ll get used to it, don’t worry. Flappiness? It just is.)
So now the Theme to Jaws is playing in your head. And you are asking yourself, “What do I do? Should I call my doctor? What if he doesn’t have autism? What if everybody finds out and treats him differently?”
Here’s what you should do.
Call his doctor. Explain to his doctor each and every one of the symptoms your child has. If your doctor waves away your worries and says, “Let’s wait a little longer and see”? Either convince her, insist, or see another doctor. Even very good doctors may not recognize some of the signs.
Get an autism screening. I’ll repeat that. Get an autism screening*. Even if your child were falsely diagnosed with autism-even if he is simply a late bloomer- it won’t make him autistic. He’d simply continue to thrive, and you could throw that diagnosis in the trash. Or get him undiagnosed. A false diagnosis is not the worse thing that could happen. The worst thing that could happen is that your child is autistic and would miss out on years of beneficial therapy. The worst thing that could happen is that dark regret that would haunt you years from now that you didn’t trust your gut. There are a lot of special needs parents out there who can tell you about that. Don’t let that be you.
And if he is autistic or has Asperger’s? You know what? You’re gonna be okay. Yes, I’m talking to you. Don’t believe all that foolishness about it taking a special person to raise a special needs child. It doesn’t. It is the child who makes you special. Really.
You are going to grieve. You are going to grieve for things you took for granted that may not come to pass. He might not ever play Little League, be a Boy Scout, or skateboard. Then again, he might. The not knowing is the hardest part. Hope is a roller coaster. You will need to remember that your child has not been taken from you. This is the child you were given all along. And no one, no one, is better suited to be his champion. You are allowed to cry. Try not to do it in front of him. And then you are going to have to put on your proverbial Big Girl (or Boy) Panties. Suck it up. You already knew you’d walk through fire for him. So suit up.
And I’ll tell you something else. Autism, at its worst, can rob you of a lot of things. But it doesn’t have to be a tragedy. It’s still early. Autistic children may not ever learn to talk or care for themselves. But they will still give you joy and teach you many things about love and gratitude. Autistic children may grow up to need support, but have happy, productive, and fulfilling lives. Some autistic children may go on to great things, their minds uniquely suited to bring something to humanity that it hasn’t seen before. You know about Einstein, Mozart, Andy Warhol, Temple Grandin, Dan Aykroyd, and other successful people across the autism spectrum don’t you? Yep, they are or are suspected to be [have been} on it. But there are a lot more people out there on the spectrum who are co-workers, friends, parents — just everyday folks who see the world from a different vantage point– than you might expect.
Then, with diagnosis in hand and therapies started, reach out. Join a support group. Read books. Write a blog. Advocate. Join the online autism spectrum community – made up of ASD people, their friends and loved ones, doctors, therapists, teachers, and more. They are an amazing group of people whose arms are open to you. (I just made that discovery myself.) And repeat to yourself: I can do this. This is not a tragedy. And I am not alone.
For you really are not alone.
Note: Little girls can, of course, be autistic as well. For the sake of brevity, I used a male pronoun.
*The autism screening test for toddlers is called an M-CHAT, and it’s free. You can even print it off the internet. Either way, your doctor will know about it.