Autism: Should I Worry?

| April 4, 2012 | 6 Comments

Boy worrying“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.

Autism SealWhat 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.

Comments (6)

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  1. Aida C. says:

    My son is a soon to be 13 year old this month of April. Whenhe was first diagnosed I had no idea what autism was. When I started educating myself on it I was devastated. I mourned the loss of a normal child and he was my first born. You’re absolutely right denial is NOT your friend it’s your enemy it was difficult but accepting it and acknowledging that my son was autistic was a huge step. It took me some time but I did it. He had early intervention services and he know has Wrap around services at home and at school. He is my shining star and mind you I have tteo more boys 8 and almost 4 they are normal boys hehe love them all! But all in all my son’s diagnosis made my grow in a way no one could imagine. It’s a challenge take on happily and with great faith in GOD. People always ask me how do I do it. And I say”One day at a time is all I can as for”. Then I go about my day with a smile on my face because I know my son is getting the help and love that he needs in order to get through his good days and bad days. My younger ones are amazing they love him tons as I wouldn’t trade that for all the money in the world. It ain’t easy But I make it work. I have to he needs me and his dad too without him it would be even more of a challenge.

  2. Thank you for sharing your story. You make other moms going through this feel like they are not alone. This is so important! Caring for an autistic son or daughter can feel very isolating. God’s blessings on you and your children!

  3. Sue says:

    I enjoyed reading your article. I understand that the ratio is 1 in 80 now and is increasing all the time. My grandson was dx a couple of years ago with Aspergers Syndrome. I was not made aware of what was going on until about 6 months ago. They live up north, I am in the south. I will be visiting them in the next few months. Are there any tips on how to interact with my grandson more easily?

  4. Thank you for sharing your personal story and the great tips to watch for.

  5. Maria G says:

    Thank you for your article, I saw it on the teachmetotalk feed on facebook and shared right away.
    I wish we would’ve known the signs with our oldest. We started having that feeling that something was wrong when he was a 1 yr old but doctors said everything was fine, he’ll grow out of it. At 2 he would talk then regress 2 weeks later and be nonverbal, everyone said he is just a late talker, even our new family doctor said that! But we had that thought in the back of our mind something’s not right, than we thought perhaps he is Autistic. Finally our doctor listened when we went in again 6 mths later and now are waiting on therapy and on full diagnosis of where he is on the spectrum. He is now 3 and is practically non-verbal, rocking, loves the spinning as you said though he doesn’t do it as much anymore.
    I truly wish we would’ve known about the signs of Autism before, he’d be getting help already instead of being on a waiting list (he is now 3).
    1 in 88 is high and everyone needs to know the signs, early intervention is key.
    I hope your children are doing well and things have gotten easier, I only have 2 boys 3 and 8 mths and couldn’t imagine having 4 babies at once. Stay strong! 🙂

  6. Megan Adams says:

    Thank you for sharing your story, it was an incredible comfort for my to read about another mom going through the same thing. When my son was a newborn it was hinted at by my sister in law(who works with special needs and autistic children) that he might have sensory problems. My husband and I ignored it not wanting to think anything was wrong with our son. As first time parents that’s not what you want to hear. Now he’s almost two and I can’t keep thinking that’s he’s just a difficult child. My sister in law has been seeing signs of autism in him and the more I read I am too. Whatever it is I don’t care cause I’ll love him no matter what, but we are still in denial a little bit and are trying. We are taking it one step at a time, had him evaluated and are using the wonderful services through ESI to help him catch up and have a normal life. Once again thank you for sharing your story, yours and many others have helped me so much to get through this right now.

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