The autism spectrum is a wide spectrum, and some feel the terms used to label the condition are too broad to be helpful. Some people on the spectrum will live on their own and have high-paying jobs, while others will need help eating and dressing their entire lives. How can we have an effective conversation about a condition that affects people in such vastly different ways?
The National Council on Severe Autism (NCSA), a relatively new advocacy organization, thinks that we aren’t having effective conversations, at least for those with high needs. They want to be that voice.
The organization’s goal is to promote recognition and solutions for people with severe autism and their caregivers—and yes, they are OK with the term “severe.” Those on the spectrum who require nonstop care, they feel, are not adequately represented in the current conversation that pushes for autonomy. The NCSA aims to advocate for a “vulnerable, growing, and often overshadowed population.”
The group has been welcomed with grateful arms by some parents, but it’s also been condemned by critics who say the organization’s support of restraints, gated communities, and guardianship is dangerous and inappropriate. “These are not the people who should be in charge of this conversation,” Shannon Des Roches Rosa, managing editor of the Thinking Person’s Guide to Autism, told Spectrum News. “The NCSA is not on our kids’ side; they’re on the parents’ side.”
But for some parents, the NCSA offers acceptance and community where there has hitherto been little. “[NCSA] gives me hope that families like ours won’t always have to feel so isolated and fearful of sharing our experiences and that we can work together to protect our loved ones…” writes Lolita Quinn, whose son “has the sort of autism that no one likes to talk about. The kind where a 9-year-old breaks the windshield out of the family vehicle over and over again.”
Here are a few of the NCSA’s more controversial stances:
- Guardianship. The NCSA feels that it is appropriate for a person with autism to be appointed a guardian after they turn 18 if they are not able to make their own legal and medical decisions. They feel having a guardian that is legally required to act in a person’s best interest is the best way to protect the most vulnerable.
- Vocational options. The NCSA supports a “full range” of vocational options, including sheltered workshops and non-competitive employment. They feel that the preference for minimum-wage employment is commendable, but preferring these programs to the detriment of specialized programs leads to less, not more, employment for the severely impaired.
- Personal Safety. The NCSA acknowledges the increased risk of physical abuse and harm among those with ASD, and they do support the limited use of seclusion and restraint when “extreme circumstances demand these interventions.”
Some parents are angry that any organization claiming to support those with autism would condone restraints or guardianship. “I don’t see [the NCSA] really advocating for acceptance or understanding,” Shannon Des Roches Rosa says.
But a quick visit to the NCSA’s Facebook page proves that for some parents, the organization provides hope of support that addresses their real needs. Here are just a few of the telling comments:
- “Certainly inclusion and the many efforts to expand the lives of cognitively disabled individuals should be lauded and encouraged. However, the aggressive romanticism of autism and the insistence that the severely autistic can work, live independently and participate exclusively in ‘the community’ has left a large segment of this population out in the cold…” – Ann Sanok
- “This group is so important, and I am so grateful to feel that parents with kids on the most severe side of the spectrum are finally being heard.” – Colleen Rider
- “…thank you for helping us find a way to stop the marginalization of our severe kids by others in the ASD community. No ‘special gifts’ found in my child with severe autism – but we love him with all of our heart because he is our son, and since his voice is never heard, it is our responsibility to speak for him and his peers on the severe end of the spectrum.” – Anne Egan Ledwitch
- “My identical twin sons are both severely autistic. They are not capable of advocating for themselves in any important decisions. I’m so grateful for this organization.” – Jenny Bar Yaacov
The tension highlights the fact that the autism population needs more than a one-size-fits-all solution. The term autism, and even the autism spectrum, may simply be too small to address the wide variety of people under its umbrella as is. Without a vocabulary diverse enough to cover autism’s diverse manifestations, many feel they are not only lacking in support, but lacking even the right words to ask for it.
Katie Taylor started writing in 5th grade and hasn't stopped since. Her favorite place to pen a phrase is in front of her fireplace with a cup of tea, but she's been known to write in parking lots on the backs of old receipts if necessary. She and her husband live cozily in the Pacific Northwest enjoying rainy days and Netflix.