The forgotten faces of autism

April was autism awareness month. As is typical of such observances, various walks and fundraising activities materialized across the country in recognition of Autism Speaks and other organizations dedicated to research, education, and services for individuals on the spectrum.  Family and friends show up to support their loved one affected by autism, and the day is heartfelt and inspirational.

But merely attending these events does not highlight the full spectrum of what it means to live with autism. Older individuals with autism and those significantly affected by self-injurious behaviors or aggression often cannot attend these activities. The participants at walks are a microscopic example of a lack of visibility of autism in general, while the numbers of children being diagnosed with autism have risen 15% in the period of two years (CDC, 2018).

I am a co-caretaker along with my sister and brother-in-law of my beautiful, loving, and severely autistic nephew. Our family joined an extraordinary yet heartbreakingly vulnerable club 18 years ago. We will always, as do so many, live the rest of our lives striving to ensure the safety and security of my nephew’s future.

We are truly so lucky in a myriad of ways that cannot be ignored. We are financially stable and have enough connections to understand most of the opportunities across the country that could be possible for my nephew.

And yet, we are essentially boxed out of those opportunities. My nephew can be aggressive, self-injurious, and has recently developed epilepsy, which means he now carries a dual diagnosis. Epilepsy, a neurological condition which makes him prone to seizures, has caused medications to be altered, and whoever is with him must carry a nasal spray in case the seizure lasts over 5 minutes.

There are many complications that arise with epilepsy, but one of the most common is an injury that could be sustained from a fall during the event. At 6’2 and 250 pounds, my nephew can be quite difficult to catch. Self-injury consists of hitting both sides of his head, dropping to the ground, and slamming his head against the floor. Sometimes these events are predictable, and sometimes they are not.

Evidently, immersion into the community is challenging and requires significant support.

Even within the special needs community, however, these factors have rendered him a less than desirable person to work with. My nephew is a tough applicant for the day and residential programs. Organizations which sponsor these programs promote success stories and narratives that highlight independence, employment, and community inclusion. Their model, which allows just a few caretakers to support large groups of participants, is wonderful, and credit should go to those organizations that fulfill the needs of that group of people.

But what happens to those who require much more intensive supervision due to cognitive, sensory, behavioral, or emotional challenges?

Day and residential programs often explicitly state their inability to accept those with aggression, self-injury, and medical frailty. They list concerns regarding space, staffing, and safety, speaking of how they are ill-equipped to include more individuals with more intense challenges. With sympathetic faces and voices, directors say they wish they could do more as if, on some level, their hands are literally tied.

It is disheartening to witness the cherry picking that occurs during the admissions process. Whole slews of people get cut from the list so that programs can be seen as more impactful. It feels disingenuous for organizations to praise themselves for all their successes when the sample from which they pull is far from representative of the entire population of individuals with autism.

These problems aren’t new. In 1972, Geraldo Rivera’s expose on the atrocities at Willowbrook was a vivid illustration as to why the deinstitutionalization of those suffering from mental illness was obvious and humane (Rivera, 1972, WABC-TV). However, we failed to actually address the problem of how to care for that vulnerable population. Anyone walking down the streets of many American cities can see firsthand the outcome of our only addressing this problem half way.

Meanwhile, the rates of autism continue to rise. One of the most poignant statistics I have found is that more children are diagnosed with autism spectrum disorder than childhood cancer, diabetes, and AIDS combined (Child & Adolescent Health Measurement Initiative). A large portion of these individuals will grow into adults able to live independent lives. However, many will also have a corresponding cognitive deficit, remain non-verbal, suffer from debilitating sensory challenges and anxiety. All or any of these challenges may prevent independent futures.

Logic dictates that as the number of autism diagnoses increases, so, too, does the number of people who will require significant assistance throughout their lifespan. It is not a leap to look back at history and see where the future could lead for these most vulnerable individuals if a substantial and competent plan is not in place. Families cannot support their loved ones alone, and the system of non-for-profits, in its current state, is lacking.

These people are not castaways. They are sons, daughters, sisters, brothers, nieces, nephews, and grandchildren of everyday people who are desperate to know the love of their lives will be safe when they can no longer protect them.

To help people with special needs, we need first to acknowledge that not all of them are the same and that the programs we currently have are insufficient. Then, we can start to think about how to make sure all people with autism or a similar disability are treated with the love, respect, and care they need to thrive.