The topic of “the first” is one I wish I didn’t have to write about. However, it keeps popping up. It seems like everyday there is a new “first” autistic person modeling. Or competing for the title of Miss Some State. Or winning some award. Or being the class speaker.
In all of those cases, it should be said (if anything) the first “OPENLY” autistic person. Because surely there have been many who have achieved that particular goal, or engaged in a particular activity.
Perseverance is the key to success. And sticking to one thing. And yes, perseverance is literally one of the criteria for autism in the DSM. In the diagnostic criteria is written as a negative, as can be expected of a medical diagnosis (and is one of the reasons it needs to be moved out of DSM, if only we can assure autistic people will continue to be supported without a medical diagnosis… but I digress). The DSM-5 criteria reads:
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns,greeting rituals, need to take same route or eat same food every day).
- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
To become an outstanding athlete or model or actor or singer or scientist, you need to be able to perform the same routine, the same process, with as minimal variations as possible, until you reach perfection. If we see the same two criteria under this light, we could read:
- Great capacity to enjoy sameness, strict routines, or ritualized patterns of verbal or nonverbal behavior (e.g., can engage in an activity for long periods of time, for many days in a row, and is skilled at detecting when a routine or route or pattern is not followed).
- Extremely strong interests in a particular activity or topic (e.g., strong attachment to a given task or activity, as well as to specific interests or topics).
If you want to achieve perfection, you need to be very good at detecting when you are not reaching the right note or for the exact period of time required. Non-autistic painters could have a harder time determining if the color they mix now is exactly the same as the one mixed yesterday. A scientist would struggle if the conditions of a given experiment are not exactly the same as the previous time they followed that protocol.
Really, it should not be a surprise when an autistic person excels at a given activity or becomes a world expert in a specific topic.
Now, moving on to the “first” thing. The autism diagnosis is relatively new. The criteria has been modified and the understanding of what it means to be autistic has changed as well. A good explanation of the history of the diagnosis is explained by Bonnie Evans from the King’s College London in “How Autism Became Autism” (Hist Human Sci. 2013 Jul; 26(3): 3–31. doi: 10.1177/0952695113484320). Another must read would be Neurotribes by Steve Silverman.
The increase in prevalence of autism diagnosis shows how restrictive the criteria was, and how hesitant diagnosticians were to give it, in addition to the misdiagnosis that have been common and are narrated by autistic adults (a good compilation was written by the Autistic Science Lady, “Adult Misdiagnosis – The Default Path to an Autistic Identity”).
Because of those facts, along with an increasingly vocal and strong self-advocacy from autistic people, which has raised more awareness (and acceptance, though to a lesser extent) it is to be expected that we keep and will keep hearing about autistic people working, studying, and participating in many different activities and fields of study or workplaces. That person you hear about will not be the “first,” but the “first you know of.”
Calling someone “the first” autistic person in doing something not only feeds the stigma that autistic people cannot do or is extremely rare that they could do a particular thing. Recently we had Rachel Barcellona, an autistic contestant for Miss Florida. Surely not the first “Miss” aspirant who is autistic and not even the first openly autistic beauty pageant contestant, since Alexis Wineman, who is openly autistic and an autistic advocate, won the title of Miss Montana in 2012. But hey, yeah, let’s call the first Miss Florida. And Miss Alabama. There are plenty of states that need a “first,” right?
Even when being “the first” is not mentioned, the sole fact that this or that autistic person makes the news still speaks about exceptionalism. That person overcame obstacles. That person is unique. Others from his group have low chances of making it.
The one that really irritated me was a story from my alma mater, which also has a high school, proudly portraying Ramsés Granados Morones, who graduated from High School. One thing is to portray a genial painter who has a photographic memory. But graduating from high school? How is that a unique accomplishment? How low is your bar for autistic people?
I’m glad all of these people are accomplished, and talented, and that they persevere, and are achieving their dreams. That’s not the issue.
The issue is that they (just as women in some areas, and other neurodivergent and disabled people, and members of certain ethnic groups) are unique and newsworthy not because of an intrinsic shortage of talent or ability of the members of their group.
Rather, they are unique because a failure of our society. Our society denies them the opportunities, accommodations and support they require. How much talent are we losing? How many brilliant minds and talented people cannot fulfill their potential? That’s the conversation that we are not having, and that we must engage in.