There is an old adage in the autism spectrum disorder (ASD) community: If you meet one person with autism, you’ve met one person with autism.
People on the ASD spectrum are as diverse as people not on the spectrum. And since, as of DSM V, there are over 600 different ways that a person can get an ASD diagnosis, this should really not be surprising. However, it does make it difficult to understand and accommodate people on the spectrum, when there is no one real unifying characteristic among them. This also makes it difficult to describe autism on the whole, as it’s an umbrella term that encompasses what could likely be dozens of different diagnoses.
Self Diagnosis (That’s a thing?)
In the ASD community, self diagnosis, especially among adults who feel they were improperly never diagnosed as children, happens often.
Some in the community believe that without a proper diagnosis, people cannot be believed regarding their diagnosis. Some feel that they have lived their entire lives “passing” in order to do their best to blend in, and don’t need an expensive medical diagnosis to confirm that fact when they have no intention of pursuing any services. Others feel that they need that medical confirmation in order to verify that they are in fact “not typical”. Regardless, self diagnosis of ASD is fairly common in the community; but self diagnosis will not give anyone access to services. A proper medical diagnosis is necessary for educational/vocational/living accommodations.
Controversy regarding ASD
Recently, there has been an Autism Movement that is beginning to show signs of being similar in historical scope to the Deaf Rights Movement.
In general there seem to be 2 major groups within the movement: those who prefer the terminology “People with autism” (person first language) and those who prefer the term “Autistic people” (identity first language.)
Those who believe in person first language genuinely believe in the idea of putting the person before the disability. These tend to be the people who advocate for cures for ASD and hope to some day eliminate it. These people are also generally caretakers of ASD individuals who understand the difference between a “typical” life vs an “ASD” life; and believe that a “typical” life should be what people strive for. Among their ranks, you will find organizations such as “Autism Speaks” and “Talk About Curing Autism”. These organizations tend to resonate among people who have led typical lives and cannot understand anything different. Person first language is also a current general trend for medical terminology. A person is not defined by their disease or disability and it reminds other people that they are people first. Examples: “person with cancer”, “person with autism”.
Those who believe in identity first language do not believe that they are disabled, but neurologically different. Most people who prefer identity first language are on the spectrum themselves. They prefer identity first language because they believe that ASD is part of who they are and not something to be fixed or cured. They appreciate the difference in perspective and life experiences that ASD has given them, and generally have no desire to lead a “typical” life. However, they also realize that they have a stigma to overcome and must actively advocate for themselves in order to receive equal rights, access, and opportunities as other people. Organizations such as “Autistic Self Advocacy Network” exist to help autistic people advocate for themselves.
Both sides make passionate cases regarding their positions, on the subject. Overall, it becomes a matter of respect and preference when deciding which terminology to use to describe an entire population of people. In the interest of full disclosure, I personally prefer identity first language; however, I believe that respect of the individual is most important and will happily use whichever type of language they prefer when referring to them. I also enclose additional information within the sources so that those who are reading can make their own informed choices about what verbiage to use.(To date, I have personally worked with a great many Autistic people and a only a handful of people with autism; yet all of them have been ‘on the spectrum’. But remember that your mileage may vary.)