Is Person-First Language Being Used As A Dog Whistle For Autistic Hate Speech?


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.  

Here’s why:

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.  

Why?

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. 

[IMG: Black background text with white type. Text: Related 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.]

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. 



3 responses to “Is Person-First Language Being Used As A Dog Whistle For Autistic Hate Speech?”

  1. If you were going to talk about autism as a backpack – it comes with me!

    ABA was STILL controversial in the early 2000s [now there’s a point for those who think it will never be more controversial than it is now].

    “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. ”

    Jaime Heidel writes pieces based on these search results. One of the more popular ones was MY AUTISTIC CHILD MAKES ME MISERABLE [or you can insert any feeling word where the “Miserable” is].

    I got the sense that being fixed; recovered; cured was already old-fashioned by the very early 1990s – because of Stelhi’s SOUND OF A MIRACLE. That is one thing that that book did for me [as opposed to to or with me].

    And that point was already formed inside of me before I read about the Auditory Integration Therapy. [which Georgiana had received in the late 1970s when she was 11 and 12 in France]

    AIT, you see, only affects a subset – and a small subset – of the Autistic community.

    [you might hope your sound sensitivity might improve as you got older or you became better able to cope

    Zate has a very good post now about Exposure Therapy which is SO measured. Zate = Dr Sally Zate from Uplift].

    Everything was very fractured and much much harder to sell to a critical mass.

    Many people from the Autism Society of America [back then the National Society for Autistic Children] did know how to do their research and their homework.

    They did it well, many of them.

    At the conferences there was not so much nonsense and the nonsense was much better filtered. And, no, this is not because I am getting old and staid and forgetful.

    [there were more barriers to entry as well].

    And the Google searches tell so much! As much as any isolated sense or sound of words can tell when you are typing them in.

    [I feel anger and sadness on their keyboards or touchscreens].

    Amazon taught me how to create unique searches like “Great and genuine delight”.

    And this is not even the “murderous” variety of search…

    The clevage so much medical model and social model.
    [then you think of administrative model and charity model and scientific model].

    In the early 1990s biology was so big and it was a product of hope. And pie in the sky thinking a lot of the time.

    [pharmacology more generally too – for other neurological and behavioural troubles like depression; ADHD; anxiety].

    ***
    And I would never have used Person First Language because it was KIND.

    I would have done it because of the HISTORICAL WEIGHT – to the people it “belongs to” [ie: people who have been institutionalised because of their intellectual disability] – and to RESPECT a generation of advocates and activists.

    I hope those young people now know that they can be proudly Autistic and/or Autistic and proud.

    [the first person who ever said that in my “hearing” was Claire Sainsbury who wrote MARTIAN IN THE PLAYGROUND – and when I found out she was the author on a post about SonRise – my heart grew about 2 sizes].

    Dog whistle hearing!

    It has a way of scrambling a person’s brain – well, it does mine – and I imagine it does yours too, Eve.

    Liked by 1 person

    • This is incredible history and information. It gives me a different context of understanding PFL and I do need to learn more about the origins.

      I do not wish to disrespect those advocates and their work, or deny anyone personal choice.

      I do dislike how it’s being used in these patterns. My apologies for being too sweeping with the term ‘kindness’ – I used that word because it’s the one I’ve experienced the most in the use of PFL over IFL for autistics this past couple of years.

      Yeah, dog whistle hearing is a scramble.

      Thank you again for sharing so much. I’ve got another book on my list to read now and a lot more to learn.

      Like

      • Glad you acknowledged the point about kindness.

        And then I thought more about who I would have been kind to for when I was/might be using Person-First Language.

        Or at least not being passively or actively offensive – or even *de*fensive.

        The children *without* a currently defined disability – and their families and their teachers.

        And the general public to a lesser extent.

        It gave at least the *appearance* of considering *their* sensitivities.

        I like my kindness to be specific and to be thoughtful of an individual. Yes, as you’ve pointed out, about personal choice.

        It seemed to be a smothering and not overly thought-through kindness.

        Also the Person With construct may have been appropriate for people with terminal and chronic illnesses – that was another example where I saw it the most.

        For example: the acquired immunodeficiency virus and the more general category of seropositivity/seronegativity status.

        The conditions which did not come in under lifestyle or blame.

        [this is on my mind as I am reading an Australian research study and press release about the relative and absolute risks of cancer]

        And cystic fibrosis.

        {other things like rheumatoid arthritis and connective tissue really do become Part of the Person and thus part of Identity]

        This last is making me remember:

        “Bad – a little word with a big punch” – which was said either in ONE CHILD or in BEAUTIFUL CHILD [which I read four years apart in 2002 and 2006 – BEAUTIFUL CHILD as it was on the presses and ONE CHILD in a new Commonwealth edition].

        It was a discussion during morning talk among the students and if it is BEAUTIFUL CHILD I remember the voices of the students – Jesse and Billy in particular.

        Yes – they did talk about the word BAD in the way I want to talk about KIND [and other ways of being kind and showing kindness – like the concept of CONSIDERATION].

        The last time I used the word kind in that very general way was when I was talking about “The kindest friend in the whole world” – as in “What is most important to you”. That was in the late 1980s. [1988 – it was a set of questions my class had been asked].

        Other experiences had taught me to count and cost my words – and as you can appreciate it was not a consistent lesson – though insistent and persistent it may have been.

        Eve:

        Are you going to read MARTIAN IN THE PLAYGROUND?

        And/or SOUND OF A MIRACLE?

        The former is by a small press [Lucky Duck]. There are other books in that small press which are good like Nita Jackson’s STANDING DOWN AND FALLING UP. It was also a press for lots of students with dyspraxia; dyslexia; dyscalculia and dyssemia [thought I would throw that last one in for completeness].

        [that book was published in the late 1990s and early 2000s].

        The latter has been in lots of editions including the original Doubleday edition in 1990/91. I first encountered Georgie’s story in 1992 through a friend of my parents who read the Reader’s Digest a lot – and then a few months later when my grandmother was treated for kidney stones or a gall bladder.

        There was another very colourful edition in 1996 and another with a mother and daughter hugging in the mid-2000s.

        I think of the times we are so often told we are not kind or being kind – and often by people who do not appear to consider kindness important; or not more important than many other things.

        [My core values include dignity and generosity].

        I think of another pattern: “See the wheelchair; see the person”.

        The wheelchair is a piece of equipment which becomes the person or is an extension of the person and what they want to do – their agency and intentions.

        [the same with other assistive devices like iron lungs and mobile phones and computers and radios].

        So the reason I had mentioned SOUND OF A MIRACLE was the popularisation of that recovery mindset within a niche intervention method.

        Rimland was mentioned in that excerpt – it was the first time I had met him.

        [though he had been publishing his Autism Research Review International for the previous five years and lots of psychologists internationally had connected to him – educators also].

        He wanted Annabel to fill in what I now know to be the E2 [and I learnt that in September 1997 after I saw Temple Grandin’s] and talk about Georgie’s story in a speech. Annabel kept Georgie’s privacy until after she graduated [from high school or university I was not sure – this was in 1984 when she was 19ish – her birthday was in May 1965] and that is the type of respect I, well, respected. And I do even more now 30 years later [and that did evolve too through the years].

        Again – his work had been mentioned – and it was WAY before he got famous for consulting with the film RAIN MAN.

        Even then he was a rockstar.

        He did make ripples in the Antipodes, that is true.

        Now the Antipodes have their own very fine practitioners.

        [one of those was the late Margot Prior. Another – Bruce Tonge – who made big studies about OCD. And Lawrence Bartak who worked with Michael Rutter. Not to mention all the emerging ones – that is another story].

        And even then SOUND OF A MIRACLE was not the first time I knew about Rimland. I had read PREVENTION magazine and in an article about vitamins he was mentioned – there was a French researcher too – Jules Lelord. So that is how I learnt about vitamins b6 and b12 and magnesium and zinc… [that was in the late 1980s – AFTER RAIN MAN]

        The whole megavitamin imbroligio.

        I had had another relative who was into alternative medicine and that is why such magazines were in my reading. And this relative was one of the reasons I learnt to try to be a skeptic by the early 2000s.

        Will leave you with Wiesenthal:

        He said that when you hated one Jew it was so easy to generalise to hating *most* or *all* Jews. Prejudice has a way of spreading that way. [JUSTICE NOT VENGEANCE: 1989].

        [he also had a way of talking about the Nazi medicine people and the teachers and their unions in that book].

        Like

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