by Eve Reiland
[TW: Ableism, Hate, Slurs, Suicide, Hate and more Hate.]
When it comes to identifying as an Autistic, I’ve been “corrected” by “well meaning” people, professionals and strangers, that I’m not Autistic but rather a person “with autism.” They insist autism doesn’t define me or my children, and in many ways we’re just like ‘regular people.’
This syntax dance of words is referred to as Person First Language (PFL) and Identity First Language (IFL). As it is stated, PFL puts a ‘person’ first before their medical diagnosis, and Identity First Language (IFL) shows that Autistics are a people, and that we have a community and culture too.
An example of how the two would read …
PFL: That is a person with autism.
IFL: That is an Autistic person.
It’s my understanding socially that PFL places ‘kindness’ (this is in reference to recent campaigns by some autism organizations) at the forefront and keeps the focus on the person, not the diagnosis. I suppose, on the surface, this might be logical in non-Autistics’ theories, but in reality, I don’t think it’s kind at all. In fact, I find it incredibly offensive.
I never was ‘with autism.’ Autism is not a disease that can be cured like cancer. It’s a neurodevelopmental difference and disability. Also autism can’t be cured, regardless of all the autism myth and propaganda put out by the Autism Industry and quacks. Plus, if you need a reminder that I’m human first … that’s on you. Evolve.
A few years ago, just stating I am Autistic and proud, brought me an incredible amount of negative turmoil on social media by NT parents of Autistics. It also caught the attention of young Autistics who’d never realized being proudly Autistic was an option for them. Many of these young Autistics grew up in households with non-Autistic parents who were groomed by the Autism Industry. These Autistics grew up in a culture that was focused on ‘fixing’ them and ‘recovering’ them. Autism, or Autistics, were a burden. To be ‘less Autistic,’ ‘recovered’ or ‘cured’ was the goal for the most recent generations of Autistics.
Autism organizations drove the cure culture we’re so familiar with today. They kept parents focused on the race for that cure with the idea there was an impending autism epidemic. This mindset was very powerful. In marketing they say ‘sex sells,’ but don’t forget the two other powerful motivators in marketing: fear and hate. Autism organizations, especially Autism Speaks, acted as giant marketing firms to promote their autism narrative, push public opinion, connect with politicians and influence autism legislation.
A large part of the donations they received was poured into ad campaigns for “autism awareness” that promoted early screening, early diagnosis, and early intervention. The earlier the better. Why? Early diagnosis and intervention is all about Applied Behavioral Analysis (ABA) at 40 hours a week. It is the only autism treatment covered by insurances today.
ABA was a very controversial autism therapy that the medical community didn’t support back in the 90s. Parents of autistics and parent-founded autism organizations changed that stance with their fear-focused campaigns, incredible ability to apply pressure on politicians, and other people with influence, to push their agenda. The power and privilege of parent advocates, partnered with autism organizations, silenced and erased Autistic voices.
It is the autism community, not the Autistic community, that promotes PFL as being the correct way to refer to Autistics. I’ve been accused of splitting hairs over this language difference and use, a common minimizing tactic I’ve experienced many times. It’s disheartening to see folks, especially neurodiversity affirming professionals, argue that PFL is not harmful. It is harmful, even if you haven’t experienced or recognized the harms yet.
Look, I’ve spent several years now deconstructing Autism Speaks and their predecessors, Cure Autism Now (CAN), National Alliance for Autism Research (NAAR), and the Autism Coalition for Research and Education (ACRE) through their press releases, marketing materials, legislation efforts and more. I’ve read through hundreds of pages in autism legislation and autism awareness proclamations. In all of them I see PFL being used and in my experience of it … it felt incredibly hateful.
At first I couldn’t place why PFL felt so gross and wrong in regards to Autistics, and then it clicked. All the patterns I’ve discerned from my deconstruction efforts are that Person First Language (PFL) is being used as a dog whistle for hate speech by the Autism Industry.
Remember, fear and hate are just as powerful in marketing as that old adage about sex. PFL allows autism organizations to ‘fight autism.’ It allows parents to hate the autism, not the child. It allows hate to be seen as ‘kindness.’ PFL allows autism to be thought of as a disease. A disease that can be cured or ‘recovered.’
Here, I’ll show you some examples of how I see this pattern. When you take a PFL statement and adjust it to Identity First Language … well, I believe the perspective and patterns can be seen more easily in this manner:
PFL: Hate the autism, not the child.
IFL: Hate the Autistic.
PFL: Making a Difference in the Fight Against Autism
IFL: Making a Difference in the Fight Against Autistics
Person First Language has been weaponized by organizations like Autism Speaks, and until recently, this language pattern was a instant red flag that an autism organization is parent-led or parent-centered. It was also a giant red flag that Autistics weren’t included in any meaningful manner in these organizations either.
Due to the years of campaigning and work of autistic activists, many organizations are now attempting to include Autistic community language, culture and inclusion into their campaigns and marketing. The problem is they haven’t changed much of anything else. It all looks like a big lip service attempt to placate parents of Autistics who’ve heard adult Autistics protesting and have become far more aware of the Autistic community and our actual challenges. It’s these parents that place the pressure on autism organizations and other groups to change. So far it’s mostly words that have altered. However, keeping the same goals and agenda for autistics remains ever the same. It just sounds kinder to those who haven’t experience the fallout.
It’s parents that have the most power to place the pressure needed for systemic change in the Autism Industry. These organizations aren’t changing their tune because of the Autistic community directly. They’re changing their song and dance to appease parents who have built bridges with adult Autistics and the autistic community and to make a show of doing better. They don’t want to lose control of the autism narrative, the ability to influence autism research or deflate the autism market of their cash cow.
These organizations groomed parents into their autism belief system and have kept them divided from the Autistic community with every opportunity. It’s these organizations that double and triple down on PFL, and insist it’s kinder to use. It’s these organizations that have dismissed Autistic voices for over 30 years now and inserted their own as being more important.
Because fear and hate sell. You can hate a disease and be socially acceptable. You can combat it, fight it, battle it, wipe it out and deeply hate it. PFL powers the medical model narrative. It leaves room for others to believe we need to be ‘fixed,’ ‘recovered’ or cured.
When you change the PFL pattern to IFL pattern, the hate is far harder to mask. Take a look: Combat Autistics, fight autistics, wipe out autistics, hate autistics.
Also, IFL in context with the autism fear narrative looks just like these Google search results.
Related Google Searches:
My autistic child makes me suicidal.
I regret having my autistic child.
I hate my autistic son sound.
I can’t cope with my autistic child.
I hate my autistic son tiktok.
Can I give up my autistic child?
I hate my autistic husband.
I hate my autistic brother.
I’ve often wondered why the leaders of the autism community couldn’t make a simple show of respect to the Autistic community by using Identity First Language when requested, at the very least. After digging through the early years of these parent-founded autism organizations’ press releases, websites and media the pattern became clear: It’s all about money and power – just the same as it ever was.