Tuesday, June 28, 2011

I'm Worried My Child Has Autism: Now What?

A month or so ago, I posted about the red flags for autism in toddlers. I described them in some detail and then summarized them as follows:
  • No single words by 15 months,
  • No two-word phrases by 24 months,
  • Lack of pointing to get people to look at things,
  • Infrequent use of gestures and facial expressions to communicate,
  • Decreased use of eye contact, especially to share joy or to check out a parent's reactions to an unknown situation,
  • Decreased engagement in social games such as peek-a-boo,
  • Lack of pretend play, and
  • Decreased response to adults when adults talk to them.
You can read the whole post by clicking here; there's a lot more information about those red flags that can help you understand each one.

Since writing that post, many parents have sent me e-mails wondering what to do if their children show some of these signs.  My heart goes out to each of these parents, because I, too, am a mom, and I know how hard it is to carry worries about your child with you each day.  It's a bit difficult to give good advice about a topic as complex as autism in a blog post, especially knowing that blog post will cross distance and time and countries.  My advice, then, is broad in nature.  But I hope it is enough to get you started.

If You Are Worried Your Child May Have Autism....

Seek Out Help 

The first thing you will want to to do is talk to your child's physician.  Share your concerns.  Ask what services are available and how you might access those services. Don't be afraid to advocate for your child. Not every physician is well versed in child development. Make sure your concerns are answered; switch physicians if you need to; ask around in your community to identify those who are regarded as experts in child development; do your best to make sure your child is evaluated by the people who know what they are looking for.  Evaluation is important, because it leads to treatment, and when it comes to autism we know that intense treatment that is provided early is often a huge key to success.  You can learn more about talking to your physician about your concerns by clicking here.

Learn More 

About Screening for Autism:
In addition to reading my post on the red flags of autism in young children, you may also want to use the M-CHAT to help you determine if your child is at risk for a diagnosis on the autism spectrum.  The M-CHAT (or Modified Checklist for Autism in Toddlers) is a short questionnaire comprised of simple yes/no answers. It is designed to screen for autism in children aged 16-30 months.  Failing it does not--DOES NOT!!-- mean your child has autism. It does mean, however, that he should be seen by a professional for further evaluation. Here's how you use it. 

1. Click here to download the M-CHAT questionnaire from the website www.firstsigns.org.  To get a unbiased picture of your child, complete the questionnaire before reading the instructions on scoring it.  Answer the questions in the way your child usually acts. If he does something rarely, answer that question "no."

2. Click here to download the scoring instructions. Read them very carefully, as they can be confusing to understand at first. 

3. If your child fails the M-CHAT, talk to your physician.  Remember that failing does not mean your child has autism...just that further evaluation is needed.

About Treatment for Autism:
Treatment for children with an autism spectrum disorder can be bewildering and overwhelming at first. There are many options, and many people who claim that their option is the only way to treat this disorder effectively.  If you suspect (or know) that your child may be (or is) on the autism spectrum, you will want to start learning about the different treatments that are available. A great place to start is by downloading the 100 Day Kit from www.autismspeaks.org. It's designed to assist families in getting the information they need in the first 100 days of an autism diagnosis. In it, you will learn more about the diagnosis of autism. You will also about the different treatments that exist, such as:
  • Early Intervention
  • School Based Services
  • Speech-Language Therapy and Occupational Therapy (which are often provided through Early Intervention and School Based Services and which often utilize a variety of the approaches described next)
  • Applied Behavioral Analysis, Pivotal Response Training, and Verbal Behavior--all carefully structured treatment approaches that are based on the principles of behavioral learning. In each of these approaches, big tasks are broken down into small skills that can be easily taught and reinforced, and are then brought back into bigger tasks again. 
  •  DIR/Floortime, which is designed to help a child reach social and emotional milestones and reconnect with those he loves,
  • The Picture Exchange Communication System, in which children learn to exchange a picture for a desired object,
  • Sensory Integration, the SCERTS Model, TEACCH, RDI, and more. 

    Start On Your Own

    One of the most important things to know about autism is that children with this diagnosis learn differently. They generally don't respond to typical parenting; instead, they need to be pulled into our world to connect and engage and learn--over and over and over again.  Fortunately, there are ways to do this. Unfortunately, it's not always easy. If you can't access services to help you do this, are waiting for services, or just plain want to get started with your child, there are two books I would suggest to help.

    1. The first is Overcoming Autism by Lynn Kern Koegl and Claire Lazebnik.  Chapter Two is entitled, "Ending The Long Silence: Teaching Your Child To Communicate," and is a wonderful introduction to using the principles of behavioral learning to help your child with autism begin to communicate. The rest of the book is full of practical, hands-on advice for helping your child across a wide variety of subjects. 

    2. The second is The Child With Special Needs by Stanley Greenspan. The first half of this book describes Dr. Greenspan's view on biological challenges, as well as the six developmental milestones through which Dr. Greenspan believed children need to progress. It's important information, for sure. But if you are looking to get started, flip further into the book, to the chapter titled, "Floor Time 1: Attention, Engagement, and Intimacy: Helping a Child Become Interested in The World and Connect With People."  This chapter, and the ones that follow, are full of easy to understand suggestions for helping your child reconnect emotionally with the world.

    (A note: Some professionals and parents who are well-versed in the world of autism may find it odd that I am recommending two books that explain two approaches to treatment that can sometimes be seen as highly contradictory and at odds with each other. Indeed, Overcoming Autism is based on the principles of behavioral learning, while The Child with Special Needs utilizes the developmental methods promoted by DIR/Floortime. Some professionals believe that you have to choose one or the other.  It is my own opinion, however, that the best treatment approaches draw from both sides of the coin; our children need both skill and emotional connection. Therefore, I am recommending both).

    Have Hope
    I have never been in the shoes of a parent with a child with autism, so I can not claim to fully understand how you feel.  But I have been through enough in my own life that I do understand how hard it is to be at the beginning of what may seem to be a daunting journey, headed steeply uphill. And I have walked next to dozens and dozens of parents as they have worked their way through the pain and come out the other side, stronger and full of love for the child that they have been given to parent. Have hope. It will get better.

    Do you have a helpful hint for families just starting out on this journey? Please leave it in a comment, below. 

    Greenspan, S., Wiedner, S., & Simons, R. (1998). The Child With Special Needs
    Koegel, L., LaZebnik, C. (2005). Overcoming Autism 



    1. Thanks for stopping by The Kid's Fun Review. What a great and helpful post this is! I've had the wonderful opportunity to work with children who has autism. They're some of my favorite kids, but they can definitely be challenging sometimes. When you get your photo books post done, stop back over and share the link!

      I'm now stalking you everywhere, I love it when I find other blogs talking kids:-)

    2. I stumbled and +1Googled you, my post is http://practicalfrugality.blogspot.com/2011/06/why-book-reviews-are-important.html

      I also have a child on the spectrum, these are GREAT tips!

    3. Stumbled you, my post is:

      Great tips. Thank you for the well thought out post.

    4. Thanks for this information.. This is a great help
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    6. It was great reading all these infos.
      Unfortunately I am in a part of the World where Early intervention and EYL and all are so expensive and it is more of a commercial business.
      However I know there is hope and we as a parent need to understand from your valuable resources.
      pls guide more on parental trainings on therapies that can be done at home with videos of mild ASD if possible. we feel helpless but not hopeless.