Frustrations Facing The 'Autism Industry'

I find it difficult to comprehend how service providers can charge an exorbitant amount of money and still sleep well at night. As a parent of a child diagnosed with autism, I have researched many viable treatment modalities and service providers. Many groups advertise through books, websites, and talk shows about how beneficial their products are, but they all come with this high ticket.

More frustrating is the amount of children that go untreated or helped because the ticket is so far out of reach. It can be difficult to sort through who is valid and who is out capitalizing on the unfortunate circumstances of so many.

Many families, like ours, have gone from two incomes to one; struggling just to make ends meet. Others have exhausted all resources including refinancing a home to pay for services; left with no other options. And yet others haven’t survived the enormous stress of having a child with autism and have gone from a family to either separated or divorced; supporting two households.

I have heard some providers even say, “If they value the service they will figure out how to pay for it. Money is never really the issue.” I challenge this! I am aware of numerous valid services for these kids that are out of our financial reach.

For instance, the tuition for a private ABA school specializing in autism that still has a $6k balance due after the autism scholarship is exhausted. What about the DAN (Defeat Autism Now) doctor who is charging hundreds of dollars just to walk through the door and tens of thousands of dollars for tests, lab work, procedures, supplements and therapies… None of which is covered by insurance. What about the waiver wait list that is years long?

It is difficult enough to sort through the acceptance of a diagnosis and the muck of what is available to your child, but then once you arrive there to realize you cannot afford to get your child well... is beyond words. Unfortunately, this is the reality of so many families.

Families need resources and they need them now! Someone needs to become proactive in this shift and advocate for our children in order for them to obtain the services and treatments that are rightfully theirs.