The hole after diagnosis

We received our Autism diagnosis from a psychologist recommended by our pediatrician.   When we got our diagnosis, they gave us a list of ABA therapy locations and told us to first check with insurance and then interview to find a fit.  We were sent out the door and that is was all we had.

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2 years later in the trenches, we are learning there is a high correlation between Autism and: sleep issues, seizures, and nutrition/gut issues.

When we went to our recent neurology appointment and the doctor asked, “Have you ever had an EEG done?  Sleep study? Genetic testing?” no, no and no.  He was a little surprised–especially considering its been 2 years.

What I am realizing is there is a hole in what parents are told after diagnosis.  Why did we have to talk to other parents, read stories, see instagram stories of all these people who have been through this and learn about all these correlations we were never told about?  When we would mention he isn’t sleeping, we hear from the doctor,  “yes, that is a common thing with kids with Autism.”  When we say its possible he’s having seizures, we hear from the doctor, “yes that is a common thing with kids with Autism.”  When we say we think he may have a gluten & soy intolerance, we hear from the doctor,  “yes, that is a common thing with kids with Autism.”  So why when we left that doctor’s office didn’t they say, “Now you have this diagnosis, here are some things you may notice so you may want to see a neurologist, a sleep specialist, a nutritionist, an allergist, etc.”

We are diligent parents.  We are working all the time on finding how to help Nolan.  If we would have been told this correlation 2 YEARS ago, we would have started all of this earlier.  We would have looked into it, we would have had these appointments, we would have worked to help him sooner.

But whose job is it?  The psychologist, the pediatrician, the ABA therapists?  I don’t blame anyone, just curios where this should fall and then is it possible to fill this hole.   I think it is important for all parents to know treatment options.  I think many parents at least want to know what they could be up against when they receive this big scary diagnosis.  We need to find a way to help parents have a map or at least a list of locations they COULD visit if their child is showing A, B, or C.  We want to be educated and we want to help–we just need to find a way to close the hole and help parents know options and opportunities to help their kids grow into the best individual they can be.

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