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As April comes to a close, so does the rush of seemingly endless posts about Autism Awareness. Contrary to popular belief, to light it up blue, or not to light it up blue, is not the most pressing question. (But if you’re wondering why I didn’t light it up blue, I talk about it here.)

Contrary to popular belief, to light it up blue, or not to light it up blue, is not the most pressing question. Click To Tweet

Our Reality: Autism + Intellectual Disability

My family lives with awareness 24/7. Not a day goes by that we aren’t aware. Not just about Autism, proper, but the realization that there are few options for adults who are on the spectrum with an intellectual disability. The unknown of what happens after age 21 keeps me awake at night.

Lack of Adult Resources

In fact, the NIH published a peer-reviewed article on the topic. That literature review shows only 23 studies world-wide that meets their criteria. In this case, the authors sought to find meaningful research on services supporting adults with Autism Spectrum Disorder in work, education, and social participation. Only twenty-three WORLD WIDE. Let that sink in for a moment.

Lifetime cost to raise a child with Autism is more than 5 times higher than that of their neurotypical peers. Couple that with an Intellectual Disability, and it skyrockets to nearly 10 times higher. Click To Tweet

Coupled with the fact that the lifetime cost to care for someone in the US with autism is about 1.4 million, it gives cause to pause. Moreover, that figure nearly doubles to 2.3 million when intellectual disabilities co-exist.

When you have a child with both autism and an intellectual disability, it's more than a sandwich generation issue, it's like being smothered in a triple-decker with bacon: Planning for retirement, balancing needs of aging parents… Click To Tweet

1 in every 59 children receives an ASD diagnosis. With that, it seems we are far behind the curve in planning for their collective futures. The lack of services for adults is astounding.

To prepare, we have an ABLE account and as much life insurance as we can afford. I want to know that her needs are taken care of when I no longer can. Unfortunately, no one tells you about such matters at diagnosis, and that’s when future planning should begin.

In conclusion, Autism awareness, and more importantly, Autism future planning, doesn’t stop on April 30th. Currently, there are too few resources for adults with autism. Options are fewer when an intellectual disability exists. Moreover, even without adequate services, the lifetime cost to care for a special needs child is astronomical.

To that end, it’s important to be vocal with your legislators. Furthermore, there are some things we can do to plan ahead – check out some of them here: what I wish I’d known as a new Special Needs Parent.

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