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If I’m Being Honest – The System is Failing Our Autistic Adults

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The month of April is just a few short days away and while it’s notoriously known for bringing awareness to autism, I am a huge proponent of using this monthly platform to educate about the sad realities for autistic adults and the overwhelming need for autism ACCEPTANCE and inclusion.

All parents have hopes and dreams for their children. My plans and expectations for Skyler’s life began before he was even born.

Would he be a star athlete, high achieving student always on the honor roll, musically inclined or even better, an exceptional friend to everyone he meets.

Of course, I daydreamed about Skyler’s career path too. Perhaps he’d love the law like his mother and become an attorney. Maybe he’d find true joy being an engineer, doctor, contractor or salesman.

As his name reveals, and I’d always say, “Sky’s the limit for my boy.”

Six months into parenting, assuming I was nailing it like a pro, imagine the shock and confusion I felt hearing that my beautiful son had autism.

Immediately following the diagnosis, I received very limited information because “much is still unknown about the cause, treatment options, financial support available and future prognosis for those with ASD.” Not to mention, each child with autism is completely unique, so each family will travel a different path along their journey.

As I was sent on my way with a few generic pamphlets and a bill for the office visit, I was forced to dramatically shift from everything I thought I knew about parenting and had to accept my new reality.

I thought, “he’s only three. If I remain steadfast on getting him into every therapy and early intervention I can find, surely, he will be afforded every chance to experience the same things as his peers when the time comes - employment, self-advocacy and independent living.”

I knew autism would impact the pace of his development but never did I give up on preparing Skyler for the incredible future that he deserved.

I always assumed I had plenty of time.

And just like that, in the blink of an eye, Skyler turns 18-years-old next week. Believe me when I tell you, I’m still in complete disbelief. I’m not ready… I need more time.

I desperately try not to dwell on the harsh realities of life for a non-verbal, severely autistic adult. I always assumed that by the time Skyler was an adult, things would have drastically improved.

Sadly, the old stigmas still exist.

It’s often assumed that upon turning the page from childhood to adulthood, all learning potential has stopped and therefore, the need for continued support, programs, funding and educational resources is a moot point.

Autism is not something a person outgrows nor is there a magic age where new skills and progress are no longer achievable.

Acceptance and coming to terms with an uncertain adult future for Skyler has remained the hardest concept for me to grasp and keeps me awake at night.

The fact is, not all autistic adults are alike. Some talk, some don’t. Some drive, some don’t. Some can advocate for themselves, others cannot.

As Skyler now officially becomes an adult, I feel as though I’m back in that medical office receiving a second autism diagnosis – but this time, there’s not a single pamphlet on how to navigate adulthood within a system that’s broken. I’m frightened and angrier knowing that Skyler is now among the older autistic population that is forgotten about and disregarded.

According to the CDC, as of April 2020, an estimated 5.4 million adults in the United States have autism.

Sadly, the federal requirement for providing supportive services in adulthood DOES NOT EXIST! The avoidance and refusal to address this issue, at both state and federal levels, which affects a rapidly growing population of adults on the spectrum, is a travesty.

For families like mine who support a loved one with autism, our daily fight advocating for services, resources and equality lasts for the entirety of our child’s life and likely beyond my own lifetime.

While I appreciate the demonstration of solidarity as the world “lights up blue” on April 2nd for World Autism Awareness day, I can’t help but think, what we truly need instead is acknowledgement that the opportunities for our adults on the spectrum to thrive in this country are lacking AND we need action taken.

It’s critical that entire communities everywhere stand together and demand assistance, support and CHANGE for all autistics - not just for those under the age of 21.

The Autism Society of America recognizes that the prevalence of autism in the United States has risen from 1 in 125 children in 2010 to 1 in 59 children in 2020!

Clearly, this rapid increase in newly diagnosed children also translates into a growing adult autistic population. Therefore, the goal for Autism Acceptance Month should be twofold: 1) to further increase understanding and awareness about autism signs and symptoms; and 2) invest time, energy and funding toward creating community partnerships with businesses and organizations dedicated to building inclusive experiences for ALL age groups.

So, I encourage you to join me, not just for the month of April but year-round, to #CelebrateDifferences. Let’s use our voices to generate change.



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