Wednesday, August 20, 2014

"Autism Parent" and the Horrible Duplicity of the "Autism" Label

A few weeks after Sam was officially diagnosed with Autism, I was having a chat with another mom at an indoor children's play place. Young and impeccably dressed in her skinny jeans, immaculately coifed hair and super-trendy looking "Proud Autism Mom" t-shirt under a fake leather jacket, I could tell right away that she and I were not cut from the same cloth. After all, I'm not entirely sure I was wearing matching socks at the time, and the odds are pretty strong that the pair I was wearing actually belonged to Sam.

But I knew- deep inside my gut- that it was only a matter of time before she came up and said 'hi'. After all, 'Autism Parents' are a community. We are all automatically bonded...right?

Given Sam's propensity for 'happy flapping', I knew she would spot us almost instantaneously. And I was right.

 She approached me, with a big smile, and I braced myself for what I knew would be an extremely awkward conversation that would leave me feeling significantly more socially-defunct than Sam ever has been.

She was friendly enough, and immediately (predictably) launched into her 'Autism Mom' speech. Her daughter, whom she described (within ear shot of her) as an "extremely high-functioning Aspie who is so smart but is an emotional roller coaster and a total nightmare to parent" had been diagnosed at age two, almost three years ago. "It was a total shock", she said.

I didn't say much. I'm not really good with strangers.

"How about you?" she asked. "When did you know Sam had Autism?"

"Pretty much from the day he was born." was my seemingly unexpected response.

"Oh? Because he didn't make eye contact or want to be touched?" she pressed.

"Nope. He loved being snuggled and the eye contact thing comes and goes. But I just knew. When he looked at objects, he looked at them differently from other babies. He didn't just look at them, he experienced them and wanted to understand them from every angle. He was different- we always knew that. The question was whether or not Autism was the best explanation for those differences, which is why we had him diagnosed. But Sam was born Autistic."

{predicted, awkward pause}

"You mean, that he has Autism right?" {Awkward laugh.} "After all, he isn't defined by his disabilities."

And there it was. "Person-first language" in all its condescending glory.

Being relatively new to the person-first debate, I admit that I didn't say much. I nodded, agreed, and came up with some excuse to escape the situation as soon as possible.  Within minutes, her daughter became very upset and needed to be removed from the space. I felt horrible for her, but extremely relieved for me. But the whole experience left an extremely sour taste in my mouth for weeks to follow.

Most of us have heard it, in some form or another:

Image description: Image is of words on a white background. Quote says: "Labels go on soup cans. Autism is a diagnosis." Font is similar to child's hand writing, and word 'Autism' uses rainbow coloured font.

It can take on many forms, but it seems to always come down to the same message:

Image description: Image is of a silhouette of a human head on a gold back ground that appears to be radiating light from the head. At the centre of the head is a puzzle piece cut out shape. At the top of image is the following quote: "Autism may make my child HOW he is but it does not make him WHO he is." - Stuart Duncan" At the bottom of image are the words "Brain Balance of St Louis/Edwardville")

"My child is more than a diagnosis. He is a person. He has autism but he is NOT autistic."

We'll all heard these arguments before. Whether you are a disabled person or are the parent of a child with a disability, you've likely had someone explain to you the importance of "person first language". They will tell you that disability, in this case Autism, should not define the child. Instead, we should focus on what the child "can do, and not on what they can't do."

Many people much more capable than I have written on this topic extensively. I would recommend taking the time to read the following articles:

As for me, I've been pretty black and white about my stance on this. Autism is not a set of behaviours, nor is it defined by the inability to perform tasks. Autism is a neurological difference, present at birth and scripted into genetic codes (for more on the definition of Autism that we use in our household, please see this fantastic post, What Is Autism?, by Nick Walker).

So when I say that Sam is Autistic, I am neither defining him by what he can do or what he can't do; I am describing him by how his brain (probably the most fundamental part of who he is as a human being) functions and by how this set of differences sets him apart from people who are not Autistic.

I am not 'defining' Sam by his diagnosis. I am not defining Sam by anything.

Sam is a human being who has the right to define himself.

(Warning: I'm about to put on my 'sociology hat again'. Proceed at your own caution)

You see, the thing about labelling theory is that human beings have a tendency to want to classify, categorize and define everything. We like to create order out of apparent chaos. We label instinctively, usually subconsciously, and we do this to socially-control behaviour.

Labels can be grouped into two major categories: Normal (or 'abiding by social norms') and Deviant (or 'deviating from social norms')

In labelling theory, the idea is that people conform to their labels. So, generally speaking, if someone (or something) is describe in negative ways, people become stigmatized by their label and 'othered' by society. This can lead to a reenforcement of the deviant behaviour as it can be extremely difficult to reintegrate into the social world once one has been stigmatized and excluded from it.

So, you can see why we would want to be very careful about 'labelling' people in ways that promote stigma.

Unfortunately, in many cases, the zealous movement of 'person first language' actually reenforces that which it is trying to combat. By stating repeatedly that Autism is a (implied 'negative') label and should not "define" our children, what is inherently being done is underscoring the idea that Autism is something that should be perceived as 'deviant', as opposed to a naturally occurring divergence from normal.

What we are inevitably doing is highlighting the deviancy of disabilities, and reenforcing the very principles that lead to stigmatization.

This is why we don't say things like "Jane Doe is a person who has homosexuality". (Well, at least we don't anymore...up until 1974, we would have said "Zita is a person has Homosexuality Disorder." because it was classified as a mental illness, using the exact same criteria and diagnostic manual as we use for ASD. Read more about that rarely talked about tidbit here.) The normalization movement within the homosexual community (see Cass Identity Model, specifically "Identity Pride" and "Identity Synthesis") demanded that normalization happen on a global-scale and not only within the LGTBQ community.

In many ways, the process of identity formation of the Autistic community parallels that of the LGTBQ movement, and it is exciting to see how Acceptance, Pride and Synthesis are being promoted throughout massive platforms. It will take time, but the message is spreading and the norms are changing. I suspect that within Sam's lifetime, we will see a massive change in the language surrounding Autism, both in the medical field and socially. And, I suspect that I will fall on the 'right side of history'.

All of that was a really, really long winded description to get to my point.

I'm all about identity-based language.

But what I am not all about is identity-appropriation. 

If you go back to my original story (assuming you can remember that far), the parent who chided me for my poor language choices was wearing an Autism t-shirt. A "Proud Autism Parent" t-shirt, to be exact.

This is a phrase you will see a LOT in the Autism community. Autism, despite being a diagnostic descriptor, is presented as being something that the entire family lives 'with'.

Not 'is affected by' or 'impacted by'.

Lives with.

Think I'm exaggerating? Think again.

Image description: Top half of Image is of a black and human eye, with tears streaming down. The pupil and iris are coloured puzzle pieces, interlocked. The bottom half of the image has the following quote in white words over a black background: "Autism causes stress, anxiety, depression, isolation, money, marital and family problems. Autism is a constant worry & is the unknwon. What can we do to change this? Be strong, tay positive, stick together, support each other,  love each other & fight for what we believe in...Our children. X Spectrum Superstars.

In the meme above, Autism is described in entirely negative terms and the "children" are treated almost as an afterthought. Moreover, there is no indication whatsoever that these children grow up to become adults who are still Autistic. The "Autism" experience is described entirely from the perspective of the parent, with the Autistic person's experience not being considered at all.

Image description: Image is of black words on a white background with two puzzle-piece ribbon symbols framing the title "Autism". Quote reads: "In what can feel like a lonely world at times, sometimes all it takes is another Autism Parent to hold out their hand and say "I understand"...for we speak the same language, the language of Autism, and we keep each other strong, we are Proud Autism Parents, and together the world is no longer a lonely place. Looking In/Looking Out - Our Autism and ADHD Family.
 In this case, the Autistic child's experience isn't even acknowledge. Once again, the entire focus is on the experience of the parent and of their 'loneliness'. The parent is the one who 'speaks' Autism, and they are the ones who build the community.

I could pull out another fifty or more examples of this, but I think you get the point.

And if you don't, let me spell it out for you clearly:

The vast majority of the dialogue regarding the experience of Autism is being had by people who do not 'have Autism' (are not Autistic). 

You see, while being "Autistic" is socially perceived as deviant and a negative label, being an 'Autism Parent' is socially perceived as an admirable and positive quality (which I wrote about yesterday). So while we shun the 'Autistic' label, we freely apply and even encourage the label of 'Autism Parent' and revere those who proudly wear it.

Therein lies the horrible irony of the Autism label.

The very same people who would chastise you not to define their child by their disability define themselves by it. This, despite the fact, that they are only vicariously affected by it.

It is extremely difficult for me to put into words how not okay this is, but I'm going to try.

To do this, I need to introduce yet another concept: Cultural appropriation.

(Note to self: Maybe this should have a been a blog series instead of one colossal post? Duly noted for future reference.)

Put simply, cultural appropriation is the act of inappropriately taking and using cultural artifacts/ideas/symbols etc. from one culture (usually in a minority setting) and using them inappropriately in your own culture (usually by the majority stakeholder).

There's been a lot of writing about this lately, from Miley Cyrus and 'ratchet culture' to the hipster headdress trend.

Suffice it to say that the things that define a culture hold an important and semi-sacred value in their traditions, customs, language and history. It is not ok to use these elements without an acknowledgment and respect for their importance, nor is it ok to devalue them by negating their cultural importance.

In short, unless something belongs to you and is part of your experiential heritage, don't claim it as your own. 

So, what does this have to do with Autism? Well, everything actually.

Culture is often only thought of in terms of race and ethnicity. But the truth is that, in the anthropological and sociological sense of the word, culture extends far beyond that and refers to the subcategorization of people into groups that are dictated by common phenomena beyond their physical characteristics.

Image is of a chart defining culture. At the top of the chart is the word 'culture' and extending from it are the words Tradition, Custom, Language, Ethnicity/Race. *I will be seeking assistance in how to describe this graph accurate, so please be patient with me as I attempt to do so.
The concept of Disability Culture is a relatively new concept, likely due to the fact that, up until recently, people with disabilities were not considered 'human beings' by medicine, the law, and society. However, today- as evolutions in technology have allowed for disabled people to have more access to self-advocacy and as laws/practices are starting to evolve away from dehumanization (far too slow, but that's another blog post topic), the world is beginning to recognize that there is, in fact, an entire culture surrounding the experience of being disabled. This culture is being explored through art, music, writings (political and apolitical), clothing, technology and the development of social language.

This culture is not only valuable for its numerous contributions to society. It is valuable in that it is acting as a catalyst of empowerment and change for people with disabilities of all types and severity. 

However, not all cultural elements are reaching social-acceptance at the same rate. While society is leaning more and more towards acknowledging that physical impairments do not limit one's humanity (as evidence by the massive shift towards mobility-friendly access in public spaces), many forms of disability (particularly social, mental, and cognitive impairments) are still incessantly dehumanized and those within those subgroups are continuously the subject of stigmatization. 

So while it would be seen as completely inappropriate for a mother of a quadriplegic child to say that "they" (referring to the family as a whole) are paralyzed, we do not bat an eye at the idea of an "Autism Parent" saying that the entire family "lives" Autism. 

In fact, in the 'Autism Parent' community, it is not at all uncommon for parents of Autistic children to actually claim a better knowledge and understanding of Autism than Autistic adults, a trend that is deeply terrifying. 

So, not only are they taking away the cultural artifacts of Autistic people (including self-identifying language), they are actually attempting to minimize their experience and kick them out of their own sub-culture. 

What they are attempting is cultural genocide.  (Which pairs nicely with the actual genocide-based advocacy of 'cure' based groups like Autism Speaks)

When the "Autism Parent" claims that title as their own while simultaneously stripping their children of the right to self-identify, they are saying, beyond the shadow of a doubt, that the Autistic person does not have the right to their Autistic experience. They are saying that Autism is about the parent, not the Autistic child. And they attempting a mass exodus of the Autistic experience within the Autism culture and community. 

What this boils down to is simple: If they can not rid the world of Autism, they can disempower it enough that it can not fight back against the stigma and will remain marginalized. In this way, the conversation will remain focused on the needs of the parent and the families, and not on the needs of the Autistic person. This contributes to the further stigmatization of the Autistic person, as well as the continued elevation of the "Autism Parent", thus perpetuating the cycle of oppression.  

As long as we continue to allow for dialogue regarding services, needs, supports, and what it is like to "live with" Autism to be dictated by us, the parents, and not by the Autistic people themselves, Autistic people will never be able to achieve social normative status and live in a world where they are not dehumanized and demonized. 

So please, don't call me an "Autism Parent'.

And please, stop calling yourself one too. Especially if you are not in full support of the Autistic self-identity movement or use 'person first language'. 

And, unless you are Autistic, do not say that you 'live with Autism'. 

If you want to support your child/sister/aunt/friend and all Autistic people in the world, start by respecting their culture, respecting their right to self-identification, respecting their right to self-autonomy and respecting the fact that it is time for parents to take a massive back seat in the conversation.

Unless you have Autism, you do not know Autism. 

You are not an "Autism Parent". You are your child's parent, and that is all. 

End of story. 


  1. I love this; and I think it is great that you have delved into it as you have - it makes for thought provoking, explanatory, and thorough, reading. I think that this could be a great resource.

    It IS bizarre that "Autism Parents" presume (without really even thinking it through) to know more about autism and autistic people, than actual autistic people.

    Thanks for putting your ideas out there xx

  2. Wow, this is genius and important. And spoiler alert, but I'm writing a little bit about similar themes recently.

    One thing I think it's important to remember, though, is that "person-first" language was actually something pioneered by developmentally disabled people of another generation. When people in institutions especially were so routinely dehumanized in light of their disabilities that insisting "No, we are PEOPLE" was a hugely revolutionary way of thinking in some contexts.

    But then we're back to how the ideals of a self-definition movement of disabled people has been co-opted to marginalize and deny self-definition to disabled people.

    Like there's a special irony to non-autistic people using "person-first" ideology to deny self-determination to autistic people. That was...not the goal of the People First movement.

  3. thank you so much for writing this. I shared it on my facebook with a large portion about disability culture included -- wanted to make sure NT folks would have more chance to read it. This is incredible. TY again.

  4. I've just stumbled across this post. It's brilliant. I'm so done with Autism Parents/Autism Warrior Parents/Martyr Parents. I've lost track now of the number of times they've screamed at me online, shut me and other autistics down, silenced us, pushed functioning labels *shudders* on us, pushed PFL on us (if you're interested, I wrote a fairly detailed piece last April on why I and the vast majority of autistics use IFL and reject PFL on my blog) and generally attacked us. And don't get me started on the "Not Like My Child" rubbish or the defence of the puzzle piece.

    NOBODY is more of an expert on autism than actual autistics.

    We are here, we are not going away, we will not be silenced. We will defend the right of our neurosiblings to exist and to be appropriately supported.

    I was diagnosed autistic 5 years ago, age 28. I am Autistic and proud. No NT gets to co-opt my neurology for their own, especially if they deny my right to use IFL in regards to myself (so deeply ironic that they rage agains IFL for their kids but can't adopt is fast enough for themselves). My husband wouldn't dream of calling himself an "Autism Husband"!