The Real Tragedy Behind the Diagnosis - Finding Cooper's Voice

I am a sitting board member for a local nonprofit autism group. We recently had an autism family event, and as always, I like to chat with families and fellow board members to get to know them better. Some have children older than my son, so I am always eager to soak up their knowledge and wisdom on this journey.

In our conversations, one thing resonated loudly… finances.

I heard stories of financial struggles just to get their children the help that they needed, whether that was proper placement in schools or access to therapies.

Some were close to getting their homes foreclosed or weren’t able to buy diapers for their other children so that their autistic child could have time-sensitive access to the help they needed, or simply trying all the things to see what would help their child be successful in this world that’s not built for them.

My family has its own financial struggles, in which the debt has been mounting with trying to access different therapies, functional medicine doctors, tests not covered by insurance, gas to get to and from said places, etc. Most of the time, when a child receives an autism diagnosis, one parent ends up leaving their employment to better support their child.

I say all this to say that the real tragedy is the lack of available resources to help autistic families.

Your average family is a working-class family trying to make it. Then comes autism, and you want to do everything you can to try to help your child have the best possible outcome in life, but finances can stop you dead in your tracks. There is so much I would like to try with my son, but finances prevent that from happening, especially when you’re already in debt.

Yes, I’m glad autism is being talked about on a bigger scale, but the real problem is access to resources.

Why can’t all 50 states in the U.S. have the Katie Beckett waiver, where your child qualifies for state insurance based on their disability and not parent income? Why do a few states pay parent caregivers and others do not, especially when the parent has to step away from employment? Why don’t all doctors (traditional or holistic) accept all insurance? Why doesn’t insurance cover all therapies (traditional/nontraditional)? My list of questions can go on and on.