Welcome to the July edition of Ask Dr. Emily!

We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Neuhaus, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format.

We welcome you to send us your questions and Dr. Neuhaus will do her best to answer them each month. Send your questions to theautismblog@seattlechildrens.org.

Q: I am a parent with a child who has been recently diagnosed with Autism.  Should I Google the word autism to get advice?

A: Often, when families begin to wonder about autism, they begin to Google. They have lots of goals — figuring out whether the diagnosis could a fit for their child, trying to learn more after a recent ASD diagnosis, or searching for support and therapy options. For the any of these goals, the internet is a natural choice – there’s a ton of information out there, and it’s usually free and easy to access.

While having that information can be a huge help to families, as a provider, I worry about what they may find. Like anything online, it can be hard to judge how accurate a website or article might be – is it based on sound science? Is the person/organization behind it biased in one direction or another? It’s also hard to know whether info online applies to any given family or individual – people are so unique that not all info will apply to every person!

For some reason, ASD seems to have an especially troublesome history with misinformation, especially in terms of causes. Sadly, for many years, parents were blamed for causing ASD! This idea was never true and there was never any science behind it, but I worry that families searching for information online might come across this history without realizing how wrong those early ideas were.

So, what do to? As a provider, I try to point families toward websites with solid information about ASD – information that’s based in science, gets updated frequently, is appropriately cautious about what we do and don’t know, and reminds readers to consult with their providers. I also encourage families to talk directly with their circle – teachers, aides, therapists, medical providers – to get info and advice that’s specific to them and their needs and goals. The internet can give general information, but nothing beats having a team of real people that parents can trust!

Center for Disease Control

Autism Speaks

Disability Scoop

Autism Science Foundation

Research Autism

Autism Speaks/ABA

Autistic Advocacy

My Autism Team

Below is a story from one parent, and her experience trying to Google information about Autism. 

My son was diagnosed with autism on a Friday at 4:00. I left the provider’s office with a yellow sticky in my hands with the words:

Autism.

Moderate to severe.

Call FEET.

 Call FEET?! Imagine Googling the words Autism and Feet.  I did. It was not helpful.  Fifteen years ago on that Friday afternoon, my doctor intended to write FEAT (Families for Effective Autism Treatment) but made a minor slip of the vowels, leaving me wilding confused, scared, and frustrated that I was not given more direction, support, and guidance. 

 The diagnosis wasn’t totally a surprise. At age two, Arthur was exhibited all the classic red flags for autism. He did not respond to his name, he had limited eye contact, he lined up toy cars the length of our living room, and my sweet little one he seemed disconnected from the world around him.  I didn’t know much about autism and I had so many unanswered questions. What caused this? Is Autism treatable? Will he be profoundly disabled or indistinguishable from his peers? What should we do right now? How do other parents cope with this diagnosis?  What is the best place to get accurate and helpful information about autism?

 Not being given adequate information at the time of diagnosis, naturally I pulled an all-night Google search, reaching the far corners of the internet and down many rabbit holes of misinformation, quackery, and claims of cure.  And most disturbing, my fervent web searches pulled up information that perhaps it was something I did during my pregnancy that caused his autism. Misinformation, blaming myself, and the impression that somehow Arthur was broken was the last thing I needed at that very tender phase in our new journey with autism. 

 Looking back, my useless Google search wasted precious fuel and caused needless heartache and fear. My time and energy should have been spent on accurate and helpful information.  

 Today parents receive more comprehensive diagnostic reports with specific recommendations based on the child’s individual needs and presentation. I urge parents to focus on those recommendations. Avoid the temptation to Google the word Autism which can overwhelm your ability to focus on your child’s needs and zap your resilience at a time when you need it the most.  

 Katrina Davis

Mother of Arthur, age 18

Family Advocate, Seattle Children’s Autism Center