This topic is near and dear to my heart. I have much to say which will take place in two blogs.
I’ll begin with a rant:
Do not let a regional center (if you live in the state of California) turn you away if you have a concern about your child and autism. Do not let them screen your child over the phone!
And, do not let your pediatrician blow off your concerns.
Push your concerns, call again, be a pest, do not let it go if your instincts tell you that something isn’t right. Do not wait. Push and be your child’s advocate.
How did our child get an evaluation for autism?
A friend made a comment at our child’s first birthday party. This comment led to us talking to that friend’s wife who was an autism behavioral specialist. She told us she had some concerns about our twelve-month-old.
This conversation led us to call a friend of ours who is a pediatrician. We asked him to take a look at our child (even though he’s not our child’s regular pediatrician). After seeing our child, he suggested we contact an agency that deals with autism.
We did not do this right away, however, but fortunately our pediatrician friend kept bugging us about calling either a regional center or the UCLA autism program to request an autism evaluation.
We eventually called the Lanterman Regional Center and requested an evaluation.
The year was 2004. The regional center scheduled our child for an evaluation immediately. The evaluation took an exhausting three hours. Afterwards, the specialist determined that our child had developmental delays and qualified for autism-related services.
Our child began services at fifteen months of age. The regional center not only gave us services right away but they congratulated us for bringing in a child who was very young. At the time, the regional center had an early intervention program but there were not a lot of clients.
What about today?
I’m going to rant some more because I have heard this story many times within the past two or three years:
“I brought my child to his pediatrician. I told the doctor that I have some concerns about autism. He said my child looks fine and refused to give me a referral.”
Or this one…
“I called the regional center and told them my concern about my child. They asked me a few questions over the phone and then told me that my child cannot have an evaluation. So, I said ‘okay’ and thanked them.”
These stories are absurd.
In this blog, I’m going to discuss the pediatrician issue. I will address the second issue in my next blog.
What about taking our child to his pediatrician?
Back in 2004, pediatricians were mainly ignoring developmental delay issues. The general feeling was that developmental delays were not physical issues so they were not considered a concern of a physician.
For example, our child’s pediatrician (not the friend pediatrician) completely ignored my autism concern. In turn, I ignored him because we already had our friend pediatrician and our autism expert on board. We eventually replaced our child’s pediatrician, he was a doctor who had ignored a legitimate parental concern and in my book he had to go.
These days, pediatricians are better about testing for developmental delays and autism.
According to the National Institute of Child Health and Human Development, “there are a number of things that parents, teachers, and others who care for children can look for to determine if a child needs to be evaluated for autism.”
What they have today is an autism screening quiz that can help to identify “red flags” of developmental delays or an autism spectrum disorder. Having one or more of the signs, symptoms, or behaviors should trigger a discussion of a possible evaluation.
Additionally, the American Academy of Pediatrics (AAP) now recommends that “all toddlers be screened for autism when they are between 18 and 24 months old.” They created a checklist that is more comprehensive than the autism screening quiz called the Modified Checklist for Autism in Toddlers.
Even better is the growing field (albeit it is still a small percentage) of specialized pediatricians called developmental pediatricians. They are board-accredited pediatricians who have also received sub-specialty training and certification in developmental behavior pediatrics.
They are supposed to be knowledgeable and experienced in regards to all Autism Spectrum Disorders (ASD). However, here’s a warning: There’s no shame in asking to any credential.
Besides that group, there still exists a problem…Not all pediatricians are screening for autism and not all are giving referrals to the very expensive developmental pediatrician.
Even though I believe the situation is better than it was in 2004, there are still too many pediatricians not listening to parents and too many still have very little experience with autism. Frustrations continue to abound between parents and pediatricians.
What can you do?
I don’t necessarily advocate putting too much stock in the Internet, but there are questionnaires out there that can help you explain and even confirm your concerns. But, as our friend told us way back in 2004, do not rely on the Internet.
So who can help us?
If you talk to your child’s pediatrician, do not leave until you are satisfied that the doctor has your child’s best interest in mind. Make sure they are not trying to save a buck by refusing a referral. When we switched pediatricians, I made sure to specifically ask the new pediatrician about treatment ideas and experiences with autism.
When choosing a pediatrician, seek one with proper credentials. They should be able to recommend treatments or be willing to forward your case to an agency that funds and provides appropriate treatments and services.
We did not know to ask these questions when our child was born. But, here’s one more huge recommendation…. You can interview your child’s pediatrician before taking on that doctor. In this manner, you are upfront and communicating with your child’s doctor and you can find out exactly how they handle all types of issue.
This is your child after all. It’ll give you peace of mind and hopefully make dealing with issues less frustrating.
To Find Kimberly Kaplan:
www.smashwords.com or Amazon Kindle ebook “A Parents’ Guide to Early Autism Intervention”