Not all disability advocacy is true disability advocacy. What do I mean by this? Sometimes, ideas, activities, and promotions that seek to advocate on behalf of disability inclusion often fall short of true advocacy because they perpetuate harmful and ableist ideas about disabilities.
Advocacy within the autism community is prime real estate, sadly, for advocacy that misses the mark of true advocacy.
Take into consideration March 17. When we think of March 17, for many of us, it evokes thoughts of Irish heritage and St. Patrick. It is a day to celebrate all things Ireland and, yes, pretend you are Irish for just a little bit during the day.
For some in the autism community, March 17 has been a day described as “Profound Autism Day” by groups like the Profound Autism Alliance and others. It is a day, group organizers claim, that can shed light on the challenges of what they describe as “profound autism. These are individuals, they say, who have a high number of needs and often require constant supervision.
I’m not a supporter of profound autism, severe autism, or any attempts to separate one type of autism from another. As a person with a non-apparent disability, a pastor, disability advocate, and a parent of an autistic child who needs constant supervision, I find the approach lacking a desire for true inclusion and falls short of truly helping the autistic community thrive. It is another harmful attempt, sadly, at placing ableist stereotypes and beliefs upon the community by those who claim to care about autistic people.
Much of what is discussed by those who use harmful words like profound or severe to describe autism is based on parental experience. This is to be expected, as many of the advocates of these labels are parents speaking over and on top of authentic voices within the community, even those with multiple needs. What these parents are looking for is recognition and understanding for the difficulty of being a caregiver for someone with constant needs, but the effort of doing so often comes through in ways that are harmful to the community.
When we place additional labels upon a person on top of autism, we subconsciously begin to rank who needs more attention and help as less able. It is a eugenics-based way of looking at people and determining which person is more capable of thriving or living in the world with limited support needs. By labeling someone as “severe” or “high functioning,” we claim preference over certain types of experiences and bodies, which is something that too often already occurs within the neurologically typical world when it comes to autism. We prefer those who are a little “odd” more so than the person who cannot maintain eye contact or a verbal conversation.
We can harm the autistic person with these efforts and minimize the needs that exist throughout the autism spectrum. As someone who was late diagnosed as autistic and having ADHD, I likely come off as high functioning because I can hold a conversation, maintain a career, and navigate much of the world. A person might assume that I do not have challenges in managing my life or that I do not need accommodations at work. The truth is that I script every conversation, maintain strict schedules, and have to have everything written down. My needs may be different, but they are needs just the same.
As well, we limit the potential of seeing the person with multiple levels of needs as a child of God and a person of sacred and holy worth. Each person has a gift and value and can contribute in their own valuable ways. When we label someone with additional titles, we harm ourselves in seeing the possible in another person and only see them as a diagnosis. The person with daily support services may also be the same person who can work on a computer and solve complex problems. We should never limit someone’s potential simply because we want recognition for our exhaustion.
Trust me, it is exhausting being a caregiver for someone with demanding needs. It is a constant battle to obtain support services, health needs, and respite. Living where I do, much of what we need for our children is not available or requires us to drive out of state to receive them. It is a lonely existence, which can keep you from family and other centers of support. We have a caregiving crisis and an autism therapy infrastructure that is too dependent on ABA and is not reflective of today’s needs.
These issues will not be fixed by adding another label or segmenting the autism community. We need more tools and resources, not by a ranking system of who is more needy.
Strong advocacy, communication, and listening to authentic voices and their needs will help expose a broken system. Those voices will tell you that the entire spectrum needs better services, more understanding, and options for life and care.
Labeling won’t get us there.
Lifting up authentic voices within the community who are seeking to make society better will.
Shannon Blosser 