Autism: Should I Worry?

“Is my child Autistic?”

Many parents these days are asking themselves that question. Most of us know someone, or are related to someone who has Autism. The gnawing fear that your child might have Autism may very well be in the back of your subconscious thoughts right now.

I’ll never forget the day I had that thought myself.

In February 2002, my husband and I received news that would forever change our lives.

After a journey with infertility, we were expecting quadruplets. The flicker of four heartbeats showed on my ultrasound, two of which were apparently going to be identical twins. Within weeks, we knew that we were going to be the parents of three boys and one girl.

Having been raised in a family where Autism was quite prevalent, I was more than aware of the fact that I was at an elevated risk of having children with Autism myself. Every time the notion crept into my consciousness, I promptly pushed it out. “Not me,” I thought. “Not me.”

Born 13 weeks premature, the babies all struggled to come home from the hospital. Days and nights ran together and endless medical procedures became a blur. I put the idea of Autism out of my head while the babies spent week after week in the Newborn Intensive Care Unit.

Finally, at 16 weeks old, the babies came home, and my life consisted of a sleepless conveyor belt of feeding, burping and changing. I prepared 32 bottles of formula and changed 40 diapers a day. My life finally started to take on a routine, and I was completely in my element caring for my darling little, tiny babies.

By the time they were six months old, the identical boys began showing some suspicious signs of Autism. One would watch his fingers right in front of his eyes for twenty minutes at a time. People would comment about how cute it was that he loved his fingers so much. Inside, I was screaming, “That’s not cute. That’s stimming!”

Shortly thereafter, the other twin learned to spin dishes on their edges. He became fixated on that behavior and would become upset when he was forced to stop.

Having a father, brother, and three nephews who are all on the Autism Spectrum, I knew what I was witnessing; yet I wanted to believe that they were just “going through a phase”. Their speech progressed slowly, but so did the other two babies. Their eye contact wasn’t great, but they also suffered from an eye condition that made it difficult for them to focus on me.

I could make an excuse for everything, despite the reality of what I was witnessing. Maybe they would grow out of it, or maybe it would be very mild Autism that would be undetectable to all except their closest friends and relatives.

For a while, denial became my friend. All the babies qualified for early intervention due to prematurity, so I was able to keep my suspicions to myself and still get outside help. I kept the therapists (who came on a monthly basis) oblivious to my concerns.

Then the day came that they cheerfully announced to me that the kids had graduated and no longer needed the program. At that time, faced with the reality that I needed help, I forced myself to choke out the words, “I believe the identical boys have Autism.”

With that statement, my secret was out. It was real. My boys had Autism and now everyone knew it.

According to the Centers for Disease Control & Prevention, the incidence of Autism is now 1 in 88.

One in 88 children have Autism. Gulp! That’s a mighty high prevalence rate.

What exactly is Autism anyway?

Autism cannot be detected through a blood test, brain scan, or any kind of genetic testing.

Autism is:

• A group of generally obsessive behaviors,
• Coupled with deficits in social skills,
• Often accompanied by speech delays or irregularities.

Autism is *currently divided into three groups:

1- Autism
2- Asperger’s syndrome
3- PDD-NOS (Pervasive development disorder, not otherwise specified.)

*To make it even more difficult to diagnose, the guidelines for diagnosis are changing again soon.

All right, take a deep breath and let’s talk about some of the risk factors:

• Boys are 4 times as likely to have Autism as girls.
• There is a strong genetic link to Autism, however the exact chromosomal abnormality is not currently clear.
• If one twin has Autism, the other twin is 70% more likely to have it as well.
• Premature children are at higher risk for Autism.
• Environmental risk factors are still unknown, but many believe they are present.

Another thing to note: there are varying degrees of Autism, hence it is referred to as the “Autism Spectrum”. On one end of the spectrum, there are very high functioning individuals who lead fairly normal lives. On the other end are those who are so severely affected that they will need to be cared for their entire lives.

As a parent, what signs should I look for?

I mentioned that my twins began engaging in self-stimulating behaviors (called “stimming” in the Autism world) at a young age.

Let’s take a look at some of the other common signs of Autism:

• Engages in extremely repetitive play for unusually long periods of time (remember my son spinning dishes?).
• Obsessively preoccupied with an object or interest beyond what other children exhibit (e.g. a stuffed animal, or Nascar races in the case of my boys).
• Heavily depends on rules and routines and wants to do the same things every day at the same time.
• Depends on familiarity and has a very difficult time in new situations.
• Difficulty in engaging in make believe or imitative play
• Becomes easily over-stimulated by lights, sounds, and crowds.
• Becomes obsessed with parts of objects (e.g. has to spin wheels on cars).
• Repetitive body movements (eye rolling, hand flapping & rocking are all common signs).
• Extreme aversion to certain sounds, textures & situations (e.g. they may go berserk at the sound of a fire alarm or have difficulty with tags on clothing).
• They may seem to have a lessened response to pain.
• Delayed, or complete lack of speech development
• Difficulty with initiating conversations.
• Exhibits echolalia (they may just repeat phrases heard instead of using regular language).
• Doesn’t respond to his/her name when called.
• Doesn’t use or respond to pointing or other non-verbal cues used by people around them.
• Low interest in playing with other children.
• Doesn’t make appropriate eye contact.
• Doesn’t look into people’s faces when speaking with them.
• Exhibits a lack of empathy.
• Doesn’t smile back.
• Peer relationships not appropriate for age (may often play with children much younger or older).
• Not motivated by praise or physical affection.

If your child exhibits one or two of these behaviors, please don’t be alarmed. The key thing to remember here is that what matters is the frequency and the severity of the patterns of behavior.

Pediatricians are becoming better trained to spot the signs of Autism, but may not know of the symptoms your child is exhibiting unless you tell him/her.

Early intervention is critical for children with Autism, and the sooner you get help, the better.

Speech can accelerate. Communication can improve. The sooner you get started, the more equipped you will be to help teach your child some of the social skills he or she may be lacking. You’ll improve your child’s quality of life, as well as your own.

Denial is NOT your friend when it comes to Autism. It can be so difficult to put aside the fear of what may happen if your child is diagnosed, but the consequences of delaying getting help can be enormous.

Everyone’s journey with Autism is different, and thank you for letting me share mine. We’d love to hear more about your experiences in the comments below.