neurology as identity, not accessory

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{image is a photo of a man reaching for his suitcase. Text reads, “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism. – Ari Ne’eman”}

As most of you know, I have chosen, unless and until Brooke directs me otherwise, to follow the Autistic community’s lead in using identity-first language. (i.e. To say, “Brooke is autistic.” vs “Brooke has autism.”).

That decision has not been without controversy nor a fairly constant online stream of well-meaning parents and therapists seeking to explain their belief that referring to my daughter as Autistic is an assault on her personhood. For the record, I would submit that assigning the ability to in any way affect one’s personhood to the shameless, proud, and honest acknowledgment of their identity is some of the most inherently ableist thinking imaginable. I know that was an awkward sentence, and I apologize for not being able to say it more concisely, but I implore you take the time to read it until it makes sense. It really, really matters. 

I recently wrote to an up-and-coming website to ask that they reconsider the language that they use around disability — and autism in particular. They never use anything other than “has autism,” and, given their growing audience among parents of young Autistics, I hoped they might be willing to discuss the implications of that choice. The editor to whom I’d reached out was receptive, and asked me to provide further information.

There’s a lot to be said about the topic, and most of it’s already been said and said quite eloquently at that. So I gathered some links and, grateful for her interest, sent them off. As long as I’d put them together for her, I thought that I’d share them here as well.

Oh, and should you disagree with the arguments presented here or my choice to be persuaded by them, well, wonderful. I will never, ever, EVER presume to tell you how you should describe, refer to, or explain yourself to others. EVER. (Nor imply that you have an obligation to do so in the first place.) What I will do is happily tell you why I made the decision that I did and why I continue to believe that the words we choose have the power to change the direction of the conversation.

I urge you to click on the links below the quotes and read the posts you find there. All but two are written by Autistic people. The two exceptions are written by me and rely heavily on the former.

“It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.”

ASAN (the Autistic Self Advocacy Network) shared Lydia Brown’s post to explain their use of identity first language

“But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.”

Jim Sinclair, founder of ANI (Autism Network Intl), in the first post that stopped me in my tracks and made me reconsider not just my language, but the thinking behind it. 

“ I call myself disabled because I don’t think my disability needs to be held at arm’s length, not because I believe that I’m autism on legs.” …

Zoe at Illusion of Competence in one of my all-time favorite posts on the topic

“One of the hallmarks of person-first language […] is that it is a way to separate a person from something that is considered unworthy, unwanted, ugly, or undesirable. […] But autism is not the same. It brings both rewards and challenges.”

Sparrow Rose Jones at Unstrange Mind

He has cancer. He has a cold. He has the flu. When was the last time you heard someone say, “He has intelligence?” or “Wow, she really has giftedness and talentedness?”
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So when we say, “has autism” aren’t we conveying a message to our kid that what they “have” ain’t good?
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John Elder Robison, Be Different
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“So just as one can be described as Jewish or Catholic or gay without taking away from any of the other possible descriptors, they can also be described as autistic and still be thousands of other things too. The word doesn’t negate the rest of a human being, it simply acknowledges and validates the reality of that person’s experience.”

Person First

“We don’t “have” typicality. Our brains aren’t wired into a briefcase that we keep chained to our wrists lest we be separated from them by an enemy agent. We ARE neurotypical. Our neurology isn’t something we have; we ARE what it makes us.

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The ludicrously overwhelming majority of my autistic friends call themselves “autistic” and bristle at the idea that they must be People First! with autism in order to be considered people. The idea that the languaging of their neurology as an adjective rather than a disassociated noun can somehow in any way compromise their personhood is abjectly absurd.”

I Don’t Have Neurotypicalism – Where Person-First Language Fails

22 thoughts on “neurology as identity, not accessory

  1. I love your resources posts. 🙂

    I don’t know if you said this, or where I read it, but I love “if you have to SAY person-first to SEE person first, you have a bigger problem to deal with”.

  2. dearest jess; our words matter but our actions may matter more. on loud mute radio, my loyal ss often says, “individuals with autism labels” to make it better. but what really makes it better is that she genuinely respects me and what i offer so we are in legitimate business together – equal 50/50 partners. personally (key word – person) not too concerned with labels b

  3. Holy smokes! Thanks for the insight! Now I know that my 14 year old son is autistic!

    …why didn’t I think of this? Thank you.

  4. Now I am going to walk around saying “I have neurotypicalness” to show people how ridiculous it sounds!

    omg! I am so excited about this! lol

  5. Identity-first language has to be approached critical. It for sure has the ability to include, boost the self-esteem and make one feel at home and happy about the ‘label’ as this is one of the features of identities. But on the other hand, there will always be a question (without any clear answer) if the self as identified through medical science is the best self, and what the consequences of basing the self upon it is.

    I did for a long time defend the Identity-first language, calling myself autistic. In this way I felt I was part of something special that not so many have the possibility to be, like an exclusive club with exclusive members. In this ‘club’ I experienced a freedom do to do what I needed to do for feeling well, something I did not felt able to do outside of it since some of the needs, feelings and behaviors did not necessary meet the social standards always.

    Despite the benefits the Identity-first language gave me, it chained me to the medical science. In identifying through a medical classification, I became a slave to it who would have to rely on it for defining myself until the medical science revoked their right to define it. This showed itself lesser and lesser fruitful, and I stopped identifying with autism. What followed this choice, I could never have imagined. My symptoms of autism disappeared as a result, to the extend that it was confirmed by doctors and psychologists. And I stood back in wonder. I had never felt as happy as when I stopped using an Identity-first language. I felt an independence and freedom that was even greater than the Identity-first language had given me.

    Not all of my needs, feelings and behaviors meet all social standards yet, and maybe they never will. But they was not part of any medical autism classification,
    thought many classificated with autism may share them, and as such they worked when using the Identity-first language. A replacement for this has been to gain the perspective that being a human imply that not all needs, feelings and behaviors always meet the social standards, and that all human beings either works to accept those sides of themselves, or fight to change the social standards.

  6. Identity-first language has to be approached critical. It for sure has the ability to include, boost the self-esteem and make one feel at home and happy about the ‘label’ as this is one of the features of identities. But on the other hand, there will always be a question (without any clear answer) if the self as identified through medical science is the best self, and what the consequences of basing the self upon it is.

    I did for a long time defend the Identity-first language, calling myself autistic. In this way I felt I was part of something special that not so many have the possibility to be, like an exclusive club with exclusive members. In this ‘club’ I experienced a freedom do to do what I needed to do for feeling well, something I did not felt able to do outside of it since some of the needs, feelings and behaviors did not necessary meet the social standards always.

    Despite the benefits the Identity-first language gave me, it chained me to the medical science. In identifying through a medical classification, I became a slave to it who would have to rely on it for defining myself until the medical science revoked their right to define it. This showed itself lesser and lesser fruitful, and I stopped identifying with autism. What followed this choice, I could never have imagined. My symptoms of autism disappeared as a result, to the extend that it was confirmed by doctors and psychologists. And I stood back in wonder. I had never felt as happy as when I stopped using an Identity-first language. I felt an independence and freedom that was even greater than the Identity-first language had given me.

    Not all of my needs, feelings and behaviors meet all social standards yet, and maybe they never will. But they was not part of any medical autism classification,
    thought many classificated with autism may share them, and as such they worked when using the Identity-first language. A replacement for this has been to gain the perspective that being a human imply that not all needs, feelings and behaviors always meet the social standards, and that all human beings either works to accept those sides of themselves, or fight to change the social standards.

      • From a medical perspective she can absolutely be called autistic yes. And that may, as said, be the best thing (and likely much better than calling her for Fred ;)).

        One of the main reason I opted out of the medical classification was my studies in educational theory. The field of educational theory does not use medical science to approach human challenges, but rely on itself as an own science. The term autism is then of lesser value, since it is a term from another science that the educational scientist often is not schooled in. And it really is not necessary neither, since educational theory does not approach the human with a question about why the human being is what it is, but rather approach the human with the question “how can this human be formed according to the set goal/standards?” In this way, the challenges are no longer something the human in focus has the responsibility for, but something which the educational theory and practice has the responsibility for. As an educational scientist I have found it much easier to relate to educational theory for my own challenges, rather than medical science in which I am not educated in and as such has no real rights to participate in.

        I do not think that the path I have taken is an easy solution to something which certainly present itself both as a challenge but also as an enrichment in life. I think it is a complex problem with many factors that have to be taken into account to settle what the best solution in the individual cases is. But I find it important to illuminate the scientifical system, so that everyone get a fair chance to relate to the science that best guides their life. For a scientific classification is nothing more than a useful tool for the particular science it is used in, it does not tell the full truth.

  7. People First is a recently invented hoax. There is no evidence that adjective first phrasing is harmful to anyone. Sorry, it will take more than righteous posturing and mere assertion to convince me and the world to alter our style. Show me the real people who have been damaged. I agree it is important not to use disrespectful and ignorant words for people. But it is also rude and wrong to perch oneself on a moral high ground and demand that people change their style out of empty political correctness. Families of the autistic, the disabled, have much bigger fish to fry than to waste their time sucked into “gotcha” games.

  8. The ostensible goal is to attempt to supply humanity to a ***thing*** (Orlando Patterson, “Slavery and Social Death) that is instinctually understood by the (self-righteous) Normal majority as ‘not-fully-human’.

    This is described in some circles as being socially dead: subhuman, defective, ritually-polluting (golden bough and others) and parasitical. – for those autists who are utterly unable to hide their ***manifest evil*** from their Normal Betters. For those who can (to some degree; e.g. J. E. Robison) the previous list gets added to with the following terms: dangerous, predatory, and criminal.

    Normdom has ***no*** use for us in any way. We are the flies in their collective soup – ‘autistics are OUR misfortune’.

    Separating the ‘disease’ of autism is a type of splitting (R. J. Lifton, ” The Nazi Doctors) and is a smokescreen intended to distance ‘the pure, righteous Normies’ from the evil they currently do, and the worse evil their collective unconscious wants to do – which is a reenactment of Aktion T-4.

    Some Normies do that currently – analgous to the time of ‘Wild Euthanasia’ that only stopped when the murdering doctos were stopped at gunpoint. To see a replay of that part of the Holocaust, it would only take the correct laws (e.g Nuremberg laws).

    The existing set of beliefs (strongly fommeted by the Wright Collective) supports such a final sollution, even though this ‘Final Solution’ is cloacked thickly with euphemisms – like ‘resettlement in the East’ and others for an earlier species of Genocide.

    Instead of Judenrein, it will be Autisticrein – “free of all autistic taint, existence, corruption – even the memory of their accursed existence shall be erased.

    Masame Write will be most pleased, then

  9. My son has a diagnosis of childhood disintegrative disorder. Drawing a blank? It is generally considered to be a rare form of autism, even though it is no longer in the DSM. I homeschooled my son throughout elementary and secondary school. He wasn’t diagnosable with any form of autism until he was 11. He has no experience being in special education, for which I am grateful. Does anyone else suspect that the identity first movement was begun in the cesspool of public education? My son has never referred to himself as “autistic”. I’m not sure how he thinks of himself. But, out of respect for him, I use person first language. Besides, how do you add the suffix “ic” to CDD? I also work with a young man who cerebral palsy. Again, what suffix can you add to that?

    I also have a master’s in special education. I was taught to start out using person first language until you find out what the individual prefers. And don’t you bristle when you hear a mother describe her adorable little girl as “a non-verbal autistic” as though she were discussing a toaster?

    • The matter is at both big and small. I am autistic because it explains how *I* interpret at the world, it explains at how *I* interact at the world. I am Autistic because *WE* understand it, though it might be at different ways *WE* are together, *WE* are a people, unified in understanding, but different at experience. I have autism, that is why I am not neurotypical (allistic), that is why I am different at you. PDDs are difficult to understand. The topic is bigger than autism, and we shouldn’t speak for all disabled people. I am Autistic, because I may not have had at easy experiences with being so, but I am happy at me for who I am. I could not be me without autism. That is why I, and many other Autistics, do not want to be separated from our Autism.

  10. I wish to add my view that PFL is ableist in that it is only ever used about disabled people. For example, I am expected to refer to myself (regardless of my choices) as ‘a person with autism’, yet if I spoke about my ‘person with a medical degree’, it would cause huge confusion until I reverted to identity first language and explained I meant my GP (physician). Know what I mean?

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