Thanks to Cathy for a post about autism ACTION during a month that makes many of us want to log off every device we own. Send them to those who need a nudge to do the right thing, too, which is to use better data to provide better care for our beautiful children. 

By Cathy Jameson

Better data for better care

To bring the community together

Data solutions drive better data for better care.  

That’s my non-technical and very basic synopsis of an incredible, well thought out solution that the Autism Knowledge Gateway aims to provide. 

I got to meet founders and supporters of Autism  Knowledge Gateway (AKG) several months ago.  In attendance were doctors, civic leaders, medical providers, therapists, and other parents like me.  Humbling is the adjective I’d use to describe how it felt to sit at the table with some of these community leaders.  All came to support the AKG’s mission. 

The evening began with a mixer and ended with gracious hope.  I took notes during the presentation and during the speeches given by the panel.  The goals were laid out for those new to the mission with the promise to help advance autism care, which is something that has been lacking in certain areas of the medical field.  Personal stories from parents who have adult-aged children, like my son, as well as doctor’s recounting their observations from the field, peppered the night.  One story I share, from around 2008 about running into problems getting proper medical help, still leaves me dumbfounded.  Struggling again with bouts of constipation, I booked an appointment with a gastroenterologist who was well known in our area.  If anyone knew more about the intestinal tract and poop it was a good GI doc.  Right?  I was shocked when this one could not give me one tip, one remedy, or one logical reason why Ronan was dealing with chronic constipation.

After examining Rone, after listening to my timeline of recent medical events, and after hearing me ask for his expertise,  the doctor walked over the sink in the exam room.  Turning the water on, he literally washed his hands of us while saying, “You need to ask the autism doctor about this.” 

Stunned, I blurted out, “But you’re the…the poop doctor.  You can’t help us with a basic constipation issue?” 

Drying his hands, he repeated, “Ask the autism doctor.” 

It was a new low.  Of all the specialists on our growing team of providers who I thought could help us, the GI doctor then walked away from us.  “The nurse will see you out.”  Needless to say, we never went back to his practice. 

Some providers are willing to dig in and look for root causes to help their patience attain the care they need.  For those that do, AKG is something they may want to use. 

Curious what files you can search?  Register to see AKG in development. 

Listen to what other parents, and those behind the production of this tool, have to say about the motivation to create a database.  The best part is that it’s not just for medical providers but for anyone.

What roadblocks have you run into when taking your child to a doctor?  Were the problems your child was facing common to autism symptoms or something different?  The latest one for us isn’t about getting a doctor to treat a co-morbid issue but about the ongoing battle to get timely dental care. 

Ronan needs some dental work that would’ve had a typical patient in and out of a typical clinic within a few short weeks.  It’s taken us several long months to schedule the same kind of procedure.  We’ve expressed our incredible disappointment and great concern with the specialty clinic, but they tell us their hands are tied.  We might’ve gotten an appointment a bit sooner had one of their schedulers not screwed up the entire schedule.  Unfortunately, the only one paying the price for that mistake is Ronan.  In September, his appointment was originally scheduled for December.  It then got pushed to January.  It’s now not going to happen until the last week of May.  Like before, when we had a similar delay with a different specialty dental clinic, an autism diagnosis didn’t make anyone move faster; it was other massive delay after another and one more awful excuse after another that we experienced.

Moving forward, maybe a tool like the Autism Knowledge Gateway will open the door for more providers.  Maybe it will help them understand and respect that our children need not just specialized care but also priority treatment.  Maybe then we will see conditions that are associated with autism being taken seriously.  If it’s up to us to help providers know that that information exists, please share the links above with those you trust.  Send them to those who need a nudge to do the right thing, too, which is to use better data to provide better care for our beautiful children. 

Cathy Jameson is a Contributing Editor for Age of Autism.