Tag Archives: developmental delay

So You’re Wondering If Your Child Might Be Autistic…

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.

Patience Is Not One of My Virtues

“Patience:  A minor form of despair disguised as a virtue.”  ~Ambrose Bierce

I’m a fairly patient person.  I’m not one to speed.  I can frequently be heard telling my husband, who has severe ADHD, to remain calm and that we will find whatever lost thing he is looking for.  I don’t get all that upset waiting in line.  And you’ll never hear me getting angry with a server because our food is taking too long.  I’m capable of being cool as a cucumber and have had more than one person proclaim me the best person to teach others how to drive a standard transmission.

So, I would have thought that I would be a good candidate for tolerating the wait-and-see of my son’s developmental delays.  For some things, I have been.  My husband gets all bent out of shape worrying about Callum’s self-limited diet of chicken nuggets and, well, basically anything dry and crunchy.  He was terribly worried about our son’s slight delay in walking.  And he asks on almost a daily basis, “When should we start potty training him?”  I know that it annoys him how calm I remain about these topics.  I was convinced that he would walk — and he did at 16 months.  I keep telling him that eventually Callum will eat other things and that we need to worry about more important things. ( I don’t really know this to be true, but it seems to pacify him — so I keep saying it. ) And potty training?  With autism already in my family, I am well aware that we could be in for the long haul.  At the very least,  Callum will probably be behind everyone else with regard to toilet training.  So, I choose not to sweat those things and keep up my annoyingly calm facade.

And it is a facade.  Because underneath all of my protestations that all will be okay, I am terrified about one thing.  When is he going to talk?   I know I am supposed to adopt an attitude of keeping-up-therapy-and-hoping-for-the-best, but I confess I suck at it.  I know that talking is not the measure of success for autistic people.  I’ve read stories and blogs about lots of ASD folks who use assistive communication and writing.  But I’m selfish.  I want him to talk.

Since I was a little girl, I have always been a lover of language.  I was a bookworm who read my first pictureless novel in the first grade and was reading almost a book a day by middle school.  When I came across a word I didn’t know, I ran to a dictionary and practiced using the word until I knew it.  Idioms have always fascinated me, and I have always sought out their origins.  When my mother was going through her antique shopping phase, I would find myself in the back of the store, looking through the old books, scrapbooks, and antique diaries.  Finding just the right word when writing, for me, is akin to a painter finding just the right color or brush stroke.  I happen to think Wikipedia is one of the great wonders of the modern world.  And I happen to believe that being illiterate is just about the worst thing that could happen to a person.  I’m the aunt who gives books to children for holidays, and I am the moderator of not one, but two online reading groups.  In my teaching career, I have been both an English teacher and a school librarian.  Suffice it to say, language defines me as a person.

But language might not be part of Callum’s life.  I don’t need my son to be captain of the football team, popular, or a genius.  But, oh, how desperately I want him to be able to communicate more than just his immediate needs.  I want him to have the power to seek information and to learn about his interests.  I want him to be able to seek out minds like his and make connections to the world.  I don’t want him to be trapped inside his own mind.

On one hand, I am trying very hard to accept that he may never talk.  After all, there are a whole lotta folks who have been in my shoes who prayed just as hard and didn’t get this very same thing.  And they have a lot of wisdom to share about changing one’s dreams and expectations.  I have no doubt that all of that is true.  The problem is that I’m just not there yet.  I’m still in that bargaining with God phase.  And I worry I’m never going to get past it.

I have said before that autism is a fascinating thing.  And it is.  But it is also a cruel tease — giving us small glimpses of the minds contained within before slamming the door shut again behind a series of elaborate and confounding locks.  It isn’t that I want him to leave the room altogether.  It’s just that I would like a really good window out of which we can see each other.

Right now, Callum is giving us a lot of good signs.  He has a few words that he uses when he feels like it.  Clearly, he has some receptive language.  Ask him if he is ready to take a nap, and he will dart to the other end of the house in an escape attempt.  He will sit at the table when asked and put his sippy cup down rather than throw it when we insist.  Say “bath”, and he enthusiastically makes a run for the tub.  He takes our hand and leads us to what he wants.  He’ll open the refrigerator and reach for or hand us the milk, saying “Pees?”.  And he’ll occasionally say, “Joo” when asked if wants milk or juice.  He gestures for help to get on the bed to jump.  If you tickle him and roughhouse, he will pull your hand back to do it again and say or sign “more”.  And he babbles with inflection all day long.  He has pretty good eye contact, is curious to see what we are doing, and “checks in” with us repeatedly when running around the house doing his thing.  There is no doubt he has the “communicative intent” all of the resources I have obsessively researched on the web have said are good predictors of speech development.  And he is still three months shy of being three.

Yet, I drive myself crazy because I know that, when it comes to autism, there are no certain predictors of anything.  And the broken record in my head starts again. I often feel stuck in a state of worry, and I can’t seem to get unstuck.

I’m trying to cut myself some slack here.  I know that I am new to this.  And I know that, at some point, I will move beyond the bargaining with God phase and into acceptance of whatever may be.  But I find it’s not happening fast enough to suit me – which brings me full circle back to the subject of patience once again.

How do so many of you reach that place of patience, peace and acceptance?  And how long will it take me to get there?