Long ago, in my advocacy journey, I stopped using the language of “high functioning” and “low functioning.”
Initially, it was because I knew my son was not “low functioning.” Many school personnel wanted me to believe it was the case, so they could justify underserving him.
His autism manifests more externally. This often leads to people underestimating him. But we saw his nuggets of intelligence in ways they did not. So we persisted.
As more people with autism are gaining access to assistive technology, the idea that they are nonverbal or otherwise more externally manifesting is beginning to diminish. Brilliant communicators who were previously presumed less able have stepped forward to say they can achieve. People who manifest the more external behaviors of autism are proving they are capable, and like my son, are consistently proving the world wrong.
Little is written about the sometimes profound and significant disability issues facing those who less externally manifest autism. This results in unreasonable expectations, a lack of support, and as the research shows, equally negative and complex outcomes for the less externally manifesting segment of the population of people with autism.
Just this week, the condition and associated challenges I share with my son and others were, again, reduced to the annoyingly simplistic descriptor of “quirky.”
As a person who’s fought to surface from abuse, repeated sexual assault and medical maltreatment under multiple misdiagnoses, I find this insensitivity and presumption dehumanizing and degrading.
Every single day, I am a person with autism. Every single day, I live my life swimming upstream. The insensitivity of those who feel my discussion of disability is an annoyance or unworthy of discussion is sometimes so disappointing that I feel I can’t breathe.
Other trauma from having to prove my condition again and again does not allow me to fluidly move forward with progress. Instead it traps me in a constant focus on my limitations. Hateful words and hostility are gestures of disbelief that have had long-term consequences to resilience and growth, as my research continues to demonstrate.
Three magical ingredients
“Resilience is a dynamic process of growth” and certain “protective factors” can facilitate growth despite trauma. (Luthar and Cicchetti, 2000)
I’d like to translate the quote above what I’ve come to find about resilience for people with autism.
- First, people with autism who achieve have enjoyed access to individualized therapeutic supports not designed to create normalcy but empowerment to maximize unique gifts.
- Secondly, people with autism have demonstrated the ability to carry on through moderate difficulty.
- Finally, people with autism have experienced the unconditional support from at least one or more people. The reality is that a disproportionately small number of individuals — often heralded as the future of autism — actually enjoy these things.
Many are fortunate to have one person – often a parent – to persist on their behalf. But in the wrong community or wrong school, the burden not of their beloved can compromise the most important of the three factors mentioned above.
Reality is much more harsh. Sadly, because the challenges of this population are under researched. The true story of the ongoing difficulties experienced by mass numbers of the less externally manifesting people with autism is misunderstood.
The implications of unmet support in various studies are far too limited, and frankly, too late in coming. But still, they are welcomed by people with autism who have long struggled needlessly because of invisibility bias. Research shows shorter life spans (Croen et al, 2015), higher suicide rates (Cassidy et al, 2014), higher mortality rates and increased complexity of co-occurring issues such as autoimmune disorders, gastrointestinal issues, chronic sleep disturbances, seizures, obesity, hypertension and diabetes are a result of insufficient support accessing health care (Burke and Stoddard, 2014).
Stoddard and Burke further describe the extreme lack of providers and cite communication issues as one of the most difficult barriers. Yet, this segment of the community is the least likely to have family or social support – even a social worker – to help them navigate systems.
People are speaking up
This is our reality. We’ve been speaking our truths in autobiographical accounts, blogs and on discussion pages for years. Finally, a few are listening. But many simply can’t hear.
Last year, while participating on an invited panel discussing autism in Washington D.C., I chose to share the most emotionally charged, personal details of my fight for survival to help inform a governmental agency about the dire need. After a gut-wrenching day of raw exposure, another panelist – a mother of a more externally manifesting autistic son – said her only wish was for him to “be like me.”
The cognitive dissonance presented by my less externally manifesting expression of autism was beyond her capacity to comprehend. Nothing I had shared had changed her understanding. So I keep telling my story.
Yes, people with autism can and do achieve. But not enough of us have access to the three magical ingredients. To do so, even invisibly, people with autism must have support, systems navigation partnerships and meaningful understanding and acceptance of our needs.
There is hope. I see it every day in the face of my son who was never supposed to remain in a general education classroom. He now lives independently at Marshall University. He’s still a person with autism. He still swims upstream against presumption, misinformation and cognitive gaps. But he remains resilient. But for everyone of him, there are thousands of people who were at least, at one point, equally capable of growth and achievement. They were unsupported, disbelieved and endured such relentless trauma that forward momentum has been disrupted. They are no less deserving of help, hope and access to quality care than any other person with autism.
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