Parents are the experts, especially when it comes to autism

parents know best

By Lisa Ackerman

About 50-75 times per week new studies on autism are released . I love that. Early in my autism journey, 16 years ago, new studies were few and far between. This week, a new study and its title caught my eye: Signs of Autism Missed More than a Third of the Time, Even by Spectrum Experts (1.)

Here is what was reported:

Parents aren’t necessarily experts for their special powers of observation, says the study’s lead author and BYU assistant professor Terisa Gabrielsen. Doctors just can’t spend as much time with the kids as their parents. These difficulties often persist until the children reach school age, by which point they may already face certain social and academic challenges.

At TACA, we provide thousands of incidences of support. In 2014, over 40,000 families reached out to us for help. What is commonly reported by parents is that they bring up concerns regarding their child’s development to their pediatrician and they must often do so several times before action is taken. This new study elaborates on this same topic:

“One of the biggest problems with early identification of autism is that many children aren’t identified until they reach the school system,” said Gabrielsen in a statement. “This means that they have missed out on some prime years for intervention that can change a child’s outcome.”

If you go to any pediatric well baby check-up appointment, you notice that the time is spent evaluating the child and listening to the parents. Parents are the best resources and witnesses to describing their young children’s’ issues and needs. This is especially true for anyone living with a child who is being evaluated for or is diagnosed with autism. The parents are the key witnesses and providers of important data.

I wrote about this earlier in a 2013 blog, “Can a 2 year old be a good witness?” (2) I think the answer is pretty obvious. But what our parent support information identifies is that parent input is often overlooked. This recent study backs that statement.

When my son lost his acquired skills, got sick and was diagnosed with autism, I knew something wasn’t right. Our pediatrician said two things: boys talk later than girls and we should “wait and see” if he catches up with his developmental milestones. About a year later he was diagnosed with autism. One valuable year was lost “waiting and seeing.”

I also witnessed my neurotypical (and amazing) daughter overcome serious medical issues.   The most serious was when my daughter was 4 days old. I remember the day clearly even though it happened 30 years ago. After a busy morning, she fell asleep on my chest for her morning nap. I remember treasuring that moment as a new mom. I also fell asleep with her and not long after, I woke up sweating. I remember kissing her forehead and noticing she had a high fever. Even though I was a very young, new mother, I knew this fever was serious. Without a second guess, we raced to the hospital where she was diagnosed with bacterial meningitis. The doctor administered treatment quickly and she survived. We were very lucky. I have two incredible miracle babies who have overcome serious medical challenges.

My point in writing this is to encourage parents to trust their instincts. If something is not right, ask questions. Seek help from resources who will take the time to listen. Get help. If you need a referral, contact us at TACA. Don’t be afraid of a diagnosis. Be afraid of no action when you know something is truly serious.

The CDC states that the average age of autism diagnosis is 4 years. The average age of diagnosis has not changed despite millions spent on autism awareness and education (3.) Autism signs can be picked up as early as 9 months. It is up to the parents to drive the diagnosis where appropriate.

We know that early intervention (both therapeutically and medically based on the child’s unique needs) improves the outcome of an autism diagnosis. Recovery is possible for some (4.) Treatments are more effective when administered early, hence the term early intervention. When a child needs help it is up to the parents to push for answers and appropriate treatments. This is backed up by the study that initiated this blog:

“Parents see their children at their very best and very worst,” Gabrielsen said. “They’re the experts for their children. They can be educated about signs and symptoms, and need to help their care providers by speaking up if there’s a problem and being involved in referral decisions.”

Listen to your gut, speak up and when it comes to children, move as quickly as possible when something is not quite right. When it comes to children’s development “wait and see” is not an effective strategy.




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