Does My Child Have Autism? When In Doubt, Check It Out.

 

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia.

Norrin was about sixteen months old when I first suspected something was “wrong.” I remember telling my mother I was concerned that Norrin wasn’t speaking. My mother waved my concerns away, she said I was just a new mom who read too many books. My husband felt the same way and told me not to worry.  And when I wondered out loud, if Norrin had autism – everyone told me that Norrin was just fine.

Then we took Norrin for his eighteen month check up with the pediatrician. I told him I was concerned about Norrin, but the pediatrician also dismissed my concerns. “Boys typically develop slower than girls…if he’s not talking by the time he turns two, then call this number,” he said and then scribbled down a number on a scrap of paper.

I wish I could say I ran home and dialed that number.

But I didn’t. I waited. I waited until January 21st – the day after Norrin’s second birthday. Norrin’s first appointment for the developmental pediatrician was scheduled six weeks later.

During my six week waiting period, I started reading about autism. And the more I read, the more I prepared myself for Norrin to be diagnosed.

Based on what I read about autism, Norrin had all the signs. I flipped through Norrin’s baby milestone calendar – you know the cutesy kind with the stickers to track baby’s firsts. I realized most of the stickers were still in their original place. I wasn’t too busy to mark the milestones, those milestones had never been met. In addition to not speaking, Norrin never pointed, clapped or waved.  He didn’t play peek-a-boo either.

Norrin also had the repetitive mannerisms associated with autism, in other words he was a “hand flapper.” All along I thought Norrin was pretending to conduct music like the kids on The Little Einsteins cartoon.

The day finally came when we met with the developmental pediatrician. After two hours of questions and observations, he recommended further evaluation. We met with a social worker, a speech pathologist, a psychologist and had Norrin’s hearing checked.  And after two months of evalautions, the developmental pediatrician confirmed what I had suspected all along.

Norrin was diagnosed with autism in May of 2008 and was recommended for Early Intervention services. By the time Norrin’s Early Intervention services started it was almost the end of June. Eight whole months after I first expressed concern to Norrin’s regular pediatrician. Eight months wasted.

I blamed myself for a long time after Norrin was diagnosed. How could I wait? Why didn’t I know? I was consumed with guilt. And I felt like I had failed my child.

But even though I waited, we were lucky in the sense that there was still time. Early Intervention services are for children 0 to 3 years old. And I was determined to make the most of the time Norrin had left. Once Norrin got the services he needed and once I knew how Norrin needed to be taught, that guilt eventually subsided.

By September, Norrin had three words and could say a few letters. He was taught to point his finger and clap his hands. He could also sign a few requests. And he laughed when we played peek-a-boo. He was making progress.

The evaluation process wasn’t easy for me. It hurt to see all the things my child could not do. It hurt to feel like I had done something wrong by waiting. And it hurt to hear the words: your child has autism.

But it felt amazing watching Norrin thrive. And I cherished and celebrated every single first, the way any new mom would. In fact, I cherished them even more because I knew how hard Norrin worked to meet the milestones that came so easily for other kids.

Since Norrin’s initial diagnosis, I’ve received calls and emails from friends who were concerned about their child’s development.  Obviously, I’m not a doctor but my advice is always the same: If you have any doubt, do not wait. Do not let anyone – not your mother, your husband or your doctor – dismiss your concerns. Trust your instincts. Take your child to see a developmental pediatrician as soon as you suspect something may be “wrong.” Do not wait until your child turns two.

I have seen too many parents wait too long and they miss the Early Intervention window. And for Norrin, Early Intervention was absolutely critical. He would not be where he is now, had it not been for those intensive early services.

I do not think of Early Invention as the beginning of his journey in special education. I think of Early Invention as the head start Norrin needed for the future he deserves.

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  1. by Angelica Perez

    On August 8, 2012 at 8:31 am

    Lisa,

    Thank you for sharing your personal story, and the process of discovery you experienced with your son. These stories are powerful because they offer insight for other parents who might be in doubt about their children. I also liked the link to the Autism page (early signs of autism) you provided.

    You are an amazing mom and advocate.

    Thank you!

  2. by Rachel

    On August 8, 2012 at 8:39 am

    Very important that you speak about Early Intervention. It’s key and critical! I hope parents who read this find their early intervention specialist and start to work together soon. I know some schools provide help too. Great post, very informative.

  3. by Jessica

    On August 8, 2012 at 8:41 am

    My experience was a lot like yours, Lisa. Everyone told me he was fine. But the one difference in getting my son diagnosed at 17 months was that our pediatrician gave me an MCHAT when I expressed concern about him talking. She asked me some questions, gave me some numbers, and I am so grateful to her. But I’ve heard many more people whose doctors wave away their complaints.

    You don’t need a doctor to call Early Intervention. Definitely call. Even if your doctor says it’s all normal.

    Great post, Lisa.

  4. by Eliana Tardio

    On August 8, 2012 at 9:09 am

    Beautiful! I´m sharing with my office as I work for the early intervention program, I am sure they will love it too!

  5. by Divina

    On August 8, 2012 at 9:43 am

    Thank you so much for sharing your story. It must have been so scary especially as a new Mami. Thankfully you got the attention you needed. I love your pictures. You have a beautiful little boy.

  6. by Alba Garza

    On August 8, 2012 at 12:04 pm

    Thank you so much for this story. I have a 7 month old.

  7. by Gaby

    On August 8, 2012 at 6:14 pm

    You’re an amazing mom!!!!!! Norrin is lucky to have you.

  8. by Sujeiry

    On August 8, 2012 at 6:18 pm

    Amazing post about what you’ve been through and great advice. As women, our instincts are our guide. That’s the case in all aspects of our lives, including love and relationships. How many times have we heard of women who felt they shouldn’t trust a man but did? Then something violent occurs. Or women who feel their body is off somehow but are turned away by doctors because they are too young to be tested for this or that. Seems the lesson is exactly what you advised, Lisa. If we feel there is something to be concerned about then we need to go with that feeling.

  9. by Monica

    On August 8, 2012 at 10:17 pm

    Love this article, Lisa. You are such a great mom and I applaud your willingness to inform other and help other moms who may be wondering about their children.

  10. by RubyDW

    On August 9, 2012 at 11:44 am

    Great advice! I think sometimes the advice from someone who can relate is greater at times. It not only stops the confusion but it truly puts us in action!

  11. by Melissa

    On August 9, 2012 at 1:25 pm

    This is a wonderful essay, with excellent advice.
    I would like to add that missing the window of EI is NOT a death knell to our childrens’ development. I am often troubled by the pressure that we as parents are under to make every moment of our child’s first three years count — so much so that it sometimes creates a “it’s now or never!” mentallity. While it is absolutely true that in many states EI services are more easily & readily available, i don’t believe that there is a magic window of enlightenment for kids with autism. And i never fault a parent for taking the time they need to digest the incredible and, often life changing, information or realization that their child has ASD. My oldest son has receieved therapy since he was 2.5 and I am constantly amazed at the progress he – now 8 – has made over the past year. I am often told inspiring stories from his therapists about older autistic people in their lives. Most recently, I learned that one of our therapists has a twin sister with autism who has just in the past year begun to communicate verbally.
    There are so many factors that come into play when you first begin to questions your child’s development. And i 100% agree that parents rely and act on their concerns, and also — as important — parents of autistic children should jettison the guilt they have connected to the incredibly difgicult decisions that must be made in the early days. It is never too late, your child will always have the ability to improve.

  12. by Lisa

    On August 10, 2012 at 6:28 pm

    They always say mother’s know best and with your own child, most often mothers do. It’s great that you can share your story for moms like you. Great post Lisa!

  13. by Jenn

    On August 11, 2012 at 7:58 pm

    I feel as though I am reading about MY son when I read this! Almost the same exact situation!!! My son turns 3 in October and will begin preschool immediately. He has been invoIved with EI since 2 1/2. I always felt something was wrong but was constantly dismissed by others. Very frustrating knowing this service was out there and I waited because of everyone else’s opinions.

  14. [...] I don’t think Autism is on the rise within the Latino community, I think it’s a matter of more Latinos being diagnosed at an earlier age. And for the most part, Latinos are diagnosed after 5 years old and have missed the window of Early Intervention services.  (Fox News Latino covered the issue in the piece Autism Not Diagnosed Early).  It is critical for parents to know the early signs of autism and to listen to our instincts.  To often, parents take the ‘wait and see’ approach. I learned that when in doubt, check it out. [...]

  15. by Viviana Hurtado/The Wise Latina Club

    On September 30, 2012 at 8:25 am

    I agree with you, trust your gut, always. It never ever leads us astray. But don’t beat yourself up since this has been your “Wonderland” too. I love the affirmation at the end: “I do not think of Early Invention as the beginning of his journey in special education. I think of Early Invention as the head start Norrin needed for the future he deserves.” Amen to that!

  16. by Kristi Campbell

    On October 25, 2012 at 10:11 am

    I know exactly how you feel. I, too, knew something was wrong with my son and believed my well-meaning friends and family when they told me that he would talk when he was ready, that boys develop more slowly than girls. I’m glad that you (and we) are getting help from early intervention. It’s really amazing, this whole world of help that exists. I write about it, too on http://www.findingninee.com.
    Thanks for sharing your story!

  17. by | To The Max

    On November 16, 2014 at 7:39 am

    [...] remember the first time I starting questioning if Norrin had autism. We had just come back from our first visit with the developmental pediatrician and I immediately [...]