Last updated on November 26, 2023
“What has changed since you started blogging in 2007?”
The question from a Facebook follower prompted me to skim the older posts and compare them to now. What has changed over 13 years and a bit? What has remained the same? Have my attitudes changed dramatically, or only a little?
- Autism is still a disability, not merely a difference.
- Autistics still don’t quite fit into other disability communities.
- Education still embraces methods that exclude autistics and other Neurodiverse students.
- Workplaces still reject autistics for not “fitting in” with coworkers.
- Unemployment remains a persistent problem for adult autistics.
- Charities still focus too much on “cures” and “treatments” instead of supports.
- I remain outside the autistic community, concerned their rhetorical choices work against inclusion.
I’m an old curmudgeon. Many of my views have hardened and remain in conflict with the rhetoric of self-advocates. I doubt we are as far apart as their social media posts suggest, though I could be wrong.
Autism is a disability. Not merely a minor difference, but a disability that limits my ability to function. As I recently posted, I could be alone in the country and my autistic traits would still be barriers to functioning.
When I speak, I do remind audiences that everyone relies on other people and accommodations in some way. Few humans could or would choose to live alone in the wilderness. We have evolved as social beings, reliant on our social groups.
However, autistic do need additional supports, beyond what is considered typical. We do have cognitive challenges, from sensory processing differences to language processing challenges.
In 2007 I argued that I was disabled, not merely different or diverse. I am still disabled.
We need “invisible” accommodations, yes. We need inclusive designs for physical and virtual spaces. We absolutely need to change how our cultures view disabled individuals. Still, I dislike the phrase “differently-abled” and hate “special” to describe disabilities.
Yet, even inclusive design cannot offset disabilities entirely. There will still be some need for extra assistance. That’s fine.
We shouldn’t be ashamed of needing extra tools to accommodate our minds and bodies. My calendars and lists are accommodations and adaptations to my executive function impairments. My canes help my physical impairments. Tools help me, and there’s no shame in that. People don’t feel the least bit ashamed of glasses. In fact, my daughters love glasses. We now associate glasses with being smart, a curious shift from seeing them as signs of disability. Let go of the shame. Move on.
Autistic communities continue to be toxic. The divisions in the autism and autistic communities run deep. The political activists demand fealty to their manifestos. The martyr parent groups demand everyone view autism as a tragedy, a cause for mourning. The charities don’t collaborate. The activist groups are dominated by personality conflicts. All the communities are exhausting.
Education stinks for autistics, both students and teachers. My pursuit of a career in education led to this blog. My experiences as a student fueled my desire to change education from within. Now, as a parent and teacher, I see that little has changed and almost no signs of progress. That’s 14 years during which education has made little to no forward progress. Instead, I’d argue we’ve gone the wrong direction for autistics and Neurodiverse students. More group work? A sure way to cause problems for autistics, and one not supported by long-term research. More emphasis on public speaking, presentations, and social skills? I understand why we emphasize social skills, but I fear we’re merely surrendering to the extroverts among us.
Testing. More testing. Followed by some testing. That’s not what students need. For autistic students, I cannot imagine these testing disruptions help retain skills or knowledge.
Yes, I could and hope to write books on what’s wrong with education from the “ASD/ADHD” perspective.
Workplaces are more social, not less, and unemployment has remained at 80 to 85 percent for autistics. Again, no progress in 14 years. No change. So, my frustrations continue. Companies have created autistic recruiting programs and there are employers that hire disabled workers. Yet, overall, the statistics have stagnated. I attribute this to the social nature of workplaces. As we spend more hours working, the workplace has become our social space. Autistics struggle in social settings, so we struggle in these increasingly social workplaces.
There isn’t a lot of socializing on an assembly line. But, I don’t want to work on an assembly line. I do want to be left alone to focus on my tasks. I do this as a writer. I do this often as a teacher. I sit at my desk, in my office, and prepare my work. I can and do collaborate, in ways that work well for me. What I don’t want are hour-long Zoom meetings or full-day “team-building” retreats.
Autistics should be asked to design our ideal workplaces. Then, we can collaborate with employers, compromising, to develop healthy spaces and healthy practices for employment. Spaces and policies should be flexible.
Yes, autistics are tired of being flexible. I’m not suggesting we surrender — that’s been our past experiences. But, I understand we cannot reject all social norms, either.
I remain on the edges of the autistic community. I do not celebrate my autism, nor do I embrace the same language as some self-advocates.
I do not like many of my autistic traits. Again, I’ve said I’d love to never have a migraine again. I’d love to not be in pain on sunny days. The physical experience of autism hurts and nobody likes pain. But, I do like being good with patterns, having a passion for learning, and other autistic traits. There’s more negative than positive, for me, but that’s because I’m always in physical overload. (My wife and I do all we can to minimize the physical triggers.)
Despite the negative experiences I associate with autistic traits, I absolutely do not want to live to see genetic tests for autism. I fear eugenics, which would then remove the positive aspects of autism alongside the negatives.
Down syndrome serves as a cautionary tale to autistics and is why many argue for Neurodiversity. Once there was a test for Down syndrome, potential parents began choosing to terminate pregnancies. Down syndrome was called a genetic mutation, a deviance, and an abnormality.
By arguing for diversity as an inclusive term, activists are trying to counter the mutant, deviant, abnormal labels that encourage people to fear autistics. For a group already alienated socially, having our traits considered mutations or deviations further excludes us from discussions about us.
Today, I use the terms Neurodiverse and Neurodiversity.
A community might be ethnically diverse. We all have an ethnicity and multiple ethnicities together are diversity. We all have neurological traits. A community of people is always neurodiverse. Reminding people of this seems to be a good idea.
Years ago, I did not use or embrace the term Neurodiversity. Those concerns I had with the term remain, but I also see a rhetorical benefit to supporting Neurodiversity. What concerns could I have with a term that promotes acceptance and inclusion?
Neurodiversity, again, suggests to some audiences that autism is “just” a minor difference. We know that’s not the case since the spectrum includes individuals with significant cognitive and physical challenges.
Autistic self-advocates justifiably worry that society will eventually seek ways to eliminate autistic traits.
But “divergent” isn’t as simple. I still avoid “-divergent” because it has too many negative connotations. Diverging is not merely being different, it’s breaking apart, going in another direction. Divergence and deviance were once used synonymously in psychological literature. I most certainly do not want to be labeled deviant. I have similar issues with “a-/ab-“ prefixes. Abnormal psychology. Atypical neurology. Too close for comfort.
Linguistically, there continue to be arguments over what to call the individual versus the community. Divergent and atypical are labels I do not want and will continue to reject, alongside genetic mutant.
I will continue to use Neurodiverse “incorrectly” for myself and my daughters. And for those whining “But language!” my response is “You have declared ‘they’ is singular, so language evolves.”
Overall, the 2021 and 2007 “me” remain similar, but today is better.
The biggest changes since 2007 are that I have completed three degrees, moved three more times, and have become a parent. That’s a lot of positive change to celebrate.