Autism and Early Intervention: Parent Experts Weigh Inmarylweimer
By now you probably know that April is National Autism Awareness Month. You’ve probably heard the alarming statistic the Centers for Disease Control recently announced: that 1 in 88 children in the U.S. falls somewhere on the autism spectrum.
It’s likely that you encounter children and adults with autism each day in your community. Odds are that you have some understanding that autism affects individuals’ ability to communicate, interact socially, and perform in school.
You may think you know a lot about autism spectrum disorder, but would you be able to identify red flags or warning signs in your toddler? Would you know where to turn if you suspected that your child might be on the autism spectrum?
There’s a lot about autism that we don’t know: Why some kids have more severe symptoms than others. If the actual rate is increasing or if the recent increase can be explained by better detection. Or the big question: Exactly what causes it in the first place?
But we do know this: the earlier a child is diagnosed and begins therapy, the better the outcomes will be.
Eight parent experts have graciously shared their insights and experiences with us about the importance of early intervention in autism. They were also asked what advice they’d give to the parent of a toddler who suspects her child may have autism.
Please read and share; even though you may not be wrestling with questions about your child’s development, it’s likely that someone you know will benefit from this information.
Sunday Stilwell – Call in the specialists 1 of 8The first thing I suggest you do if you sense there's a problem is contact your state's Infant to Toddlers/Birth to Three program. This is a free assessment that includes a team of early intervention specialists who will come to your home and do a developmental assessment. Typically if the team finds more than a 25% delay in a specific area the child will qualify for free therapy provided by the state department of education and a referral to a developmental pediatrician for further diagnostic tests.
For those who have children over the age of three, I suggest you visit your pediatrician for a referral to a developmental pediatrician. These appointments may be scheduled months in advance, so I would also contact your child's school psychologist to discuss your concerns. A pediatric psychologist may be of help in assessing your child's development and getting the ball rolling on accessing services and therapies.
Connect with Sunday at Adventures in Extreme Parenthood.
Photo credit: Sunday Stilwell
Lynn Hudoba – Trust yourself 2 of 8I was lucky enough to get stellar early intervention services for my daughter. Although she wasn't officially diagnosed until she was two, I pretty much knew that she had autism when she was around 17 months. She was already in an early intervention program from about 14 months based on gross motor delays, and in retrospect we were so lucky that she had those delays and got into the program so early. It's impossible for us to know where she would be right now had she not gotten that therapy so early on, but I'm confident that we've closed the gaps on her developmental delays much more so than if she wouldn't have had it.
Connect with Lynn at Autism Army Mom.
Photo Credit Lynn Hudoba
Joslyn Gray – Let go of your fears 3 of 8There are a lot of reasons why parents might not want to pursue an evaluation, but I think overall it stems from fear: fear that something really is wrong, fear of a social stigma, and fear that a diagnosis will make life even more difficult. The thing is, finding out about our son's autism when he was four was the best thing that ever happened to our family. Parenting became easier because we finally understood how his mind worked, and how better to teach him and communicate with him. In turn, our son became less stressed because I stopped saying stupid things like "look me in the eye when I'm talking to you."
Our daughter was diagnosed later, at age 10, which is typical of girls with Asperger Syndrome. Her diagnosis was also a blessing to our family, and most importantly, to our daughter. She felt tremendously relieved because prior to the evaluation she had begun to believe that she was "stupid" and "a monster." Having a name for the way her brain works is incredibly helpful. The Asperger diagnosis also really helps her teachers use the most appropriate and helpful teaching methods, so it's actually made their lives easier, too.
Connect with Joslyn at Stark Raving Mad Mommy.
Photo Credit: Joslyn Gray
Jennifer Bush – Act quickly 4 of 8Because I am open about my five-year-old son's autism diagnosis I often get questions from other moms about what to do if she suspects her child has autism or another developmental delay. The answer to that is easy: see your pediatrician. And if you still aren't sure, contact your state's early intervention program. You don't need a referral, and screening is free.
The most important thing is not to wait. Early intervention services, like speech therapy, occupational therapy, and behavior therapies (including Applied Behavior Analysis), will give you the tools to help your child learn the skills he needs to make progress. Moe's first therapists worked on many skills with him, from waving good-bye to taking turns, but most importantly, they taught me how to interact with Moe to help him communicate his needs, the area he struggles with most.
I always make sure to tell these parents that no matter what the diagnosis, their child is the same wonderful kid he or she has always been. An autism diagnosis may be difficult to hear, but think of it as a ticket to getting the right services for their child — and a ticket into a supportive and wonderful community of parents who are here to help. You are not alone.
Connect with Jennifer at Anybody Want a Peanut?.
Photo Credit: Jennifer Bush
Tara Cohen – Don’t give up 5 of 8If your child lacks joint attention, doesn't respond to his/her name the vast majority of the time at the first calling, doesn't engage in age-appropriate play (particularly imaginative play) by the recommended ages (12-18 months), get some help. If your child has serious gastrointestinal problems such as long-term diarrhea or food intolerances, get some help. If your doctor tells you you're a nervous first-time mother, get some help. And get another pediatrician.
I diagnosed Will myself at 22 months after being repeatedly told I was overreacting by my very highly respected pediatrician. It was not until I walked into his office with the complete DSM listing for all five spectrum disorders, highlighted and color coded to clarify what I'd been pointing out along the way, that he finally listened to my concerns and saw them as a whole syndrome rather than as an individual day's chief complaint. I knew my son was regressing. I knew he wasn't as happy. I knew he wasn't making gains as he should. I knew because he's MY son.
Connect with Tara at her website.
Photo Credit: Tara Cohen
Laura Rossi – Get tested for everything 6 of 8At just 2 ½, M was diagnosed with sensory processing disorder and developmental delays. All those years ago, we jumped on a roller coaster ride that has been a series of ruling out and eliminating conditions. Now, at age 9, we are working out the kinks in a more formal conclusion that will likely involve more than one diagnosis for our boy. M has many "red flags" and generally needs to be treated like a child with autism.
I shudder to think about where we would be with M if we didn't start early. We've had the gift of Early Intervention via our school, but also via outside services we have paid for, like OT. Parents, especially moms, start early and ask the hard questions. If your pediatrician won't listen, get a second opinion. Ask the pre-k teachers, check out screenings for sensory processing and other disorders. Do it all. It's never too early to start!
Connect with Laura at: My So Called Sensory Life
Photo Credit: Laura Rossi
Shannon Des Roches Rosa – Find tools to help you cope 7 of 8My advice is threefold: Find a pediatrician who takes your concerns seriously, find positive, evidence-based autism resources and role models (this is exactly why we created Thinking Person's Guide to Autism), and try to understand that your child's behavior is a form of communication.
Our kids deserve to achieve their potential, but can easily get left behind if their unique needs are not properly identified and addressed early on. Autism experts can help us recognize where our kids need help — be it with communication, self-help, academics, or social skills — and the best strategies for supporting their needs.
You can find Shannon's writing and interviews at The New York Times, KQED Forum, MacWorld, and Parents Magazine. She also writes at www.Squidalicious.com, as BlogHer.com's contributing editor for parenting kids with special needs, and as a co-founder and senior editor of The Thinking Person's Guide to Autism.
Photo Credit: Kelly Nicolaisen
Jessica Watson – Listen to your gut 8 of 8First, don't wait. Early intervention is the key to successfully treating autism. Second: trust your intuition. If you feel something is wrong but your pediatrician or another specialist thinks otherwise, seek a second opinion. As a parent you are your child's best advocate and you will find out quickly that your gut instinct is your most important tool.
Connect with Jessica at Four Plus an Angel.
Photo Credit: Chasing Shadows Photography
Mary Lauren Weimer is a social worker turned mother turned writer. Her blog, My 3 Little Birds, encourages moms to put down the baby books for a moment and tell their own stories. Connect with her on Facebook and Twitter.