An issue has been brewing around in my mind for months now and it is about time I get it out there to my Child and Youth Care community in order to gather further thoughts and thinking on the matter.
In the autism community, there is a self-advocacy movement that believes in the promotion of neurodiversity and the strengths people diagnosed with autism can bring to the world. I am a big fan of this movement.
Many of these advocates believe that the helping professions should discontinue using person-first language (ie. person with autism) and instead adopt the identity-first language (autistic person). Our field of Child and Youth Care often explicitly teaches us to only use person-first language when helping and referring to this population.
I personally agree with the identity-first version. I believe it captures the proud identity of these self-advocates and reduces the shame and labeling of autism as a disorder that is separate from the person (implying there can eventually be a cure).
You can read Lydia Brown's article here: a fascinating argument! http://autisticadvocacy.org/home/about-asan/identity-first-language/
Where do you stand? I look forward to your thoughts...
I, personally, do not like using anything other than “person” first because it defines someone by something other than their humanity. If you say “autistic” first it becomes the first thing I learn about the person, which may not be the most important thing. Blind person diminishes what else is interesting about a person who is blind. They may be Ray Charles – who is a musician, an African American, a husband, father, friend – who is also blind. In a “strength based” approach we want to acknowledge that no person has just one attribute, but many attributes. The most important feature of anyone to remember is that they are a person, first. Other qualities to follow.
Thank you for your reply. I used to think the same, as I am sure many Child and Youth Care practitioners do. This is why I brought it up. Your points make perfect sense – in strength-based practice, we need to look at the whole individual with all that makes them unique and wonderful. Interestingly, I believe this is the exact point of the identity-first argument as well.
I was first introduced to this identity-first concept a few years back in my Disabilities Studies elective during my Child and Youth Care undergrad at Ryerson. I believe the first time it was used by disability advocates was in the Deaf community as this population reclaimed the diagnosis 'deaf' and gave it a capital 'D' to signify that they consider Deafness to be the most integral part of who they are; it is their cultural identity with its own language and values. Referring to themselves first as 'Deaf' signified their pride much like other diversity movements, such as the LGBTQ community, who have proudly reclaimed their labels.
When I started learning of this and learned that a self-advocacy movement was working toward the same idea in the autism community, I decided to bring it up in my class of grade 9-12 students diagnosed on the autism spectrum. One young lady proudly admitted she was already quite aware of this language and said something along the lines of, "Please don't say I have autism – that would mean it is separate from me and sounds like a disease. Autism is not a disease, it is my identity and I am proud of it."
I believe what the advocates are trying to communicate to us is that, by using their identity first, the importance of diversity is highlighted and the shame of the medical diagnostic stigma is lifted. I'll go with what Lydia Brown has said because, well, she says it so much better than I can:
"When we say 'person with autism,' we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical." (http://autisticadvocacy.org/home/about-asan/identity-first-language/).
I just find this argument so powerful. She is saying that by separating 'autism' from the person using 'with' or 'has', we are valuing the person separate from the condition. I believe Lydia would agree with you Lorraine, that we have to look at the whole person with all their attributes. These attributes are highlighted more proudly when we acknowledge the autism as an integral part of who they are. I believe this also highlights their diversity- they are autistic and awesome because of all the unique attributes that come with it. Not to say they don't have their challenges, because they most certainly do! When we use their identity first, we are valuing the person's right to overcome challenges proudly, as an autistic person.
This is such an interesting standpoint and I am glad to get the chance to hash it out with other Child and Youth Care practitioners!
I'm excited that you've raised a great question in regards to neurodiversity!
I believe if we are truly working from a supportive, neurodiversity based philosophy, then we recognize that the individual is the expert of their own identity. I think what we've learned from neurodiversity, is that many autism self-advocates prefer 'autistic' or 'autistic individuals' because they believe it helps define them as a culture of people. It is very similar within the disability community as a whole and I believe this is a shift towards reversing the long-term systemic affects of Ableism.
Some of the ways neurodiversity language has been explained to me is how most people wouldn't say 'person with Catholicism' or a 'person with Canadianism', you would say a 'Catholic person' or a 'Canadian person'. These are the ways that autistic self-advocates also want to be recognized. Like any group, race, religion or culture of people, I think their opinion based off of their lived-experience is the most valuable when it comes to the language we all use.
As you describe, it is about reducing the shame/stigma attached with
'autism' or 'disability' while validating and valuing the unique
struggles and strengths of this population!
Thank you for sharing this post Nancy.
Your excitement for neurodiversity inspires me as the topic makes it way into the knowledge base of CYC. Let's definitively keep the conversation going! I hope others get as excited as we do. Recognizing young people are 'experts in their own identity' is a brilliant way to put it.
Thank you for your reply Yvonne!
The reason I would disagree is that Catholicism is a choice, and a practice, not a personal attribute. My concern is to avoid the unfortunate practice that we have engaged in for a long time in our field. “There’s the kid with A.D.H.D.”. The label thus becomes the kids primary identity, although kids with A.D.H.D. have many other attributes, many of them very positive. Or, “that kid’s angry”. Oh? Only angry? Kids who feel angry are not just “angry kids” but kids with many other qualities, not all of them negative. Thus “Autistic individual” makes autism the kids primary identity. I can’t walk without a walker but I wouldn’t want the first sentence of an introduction to be “Meet Lorraine, she can’t walk without a walker”. While that’s true, it’s not my only truth, and hopefully not my primary personal identification. Good to discuss, however.
I currently work within an intermediate Autism Program(TDSB) and to be honest the majority of the communication within the Child and Youth Care profession utilizes terms that don't reflect who the individuals are; rather they are known based on their working diagnosis. It challenges me as a Child and Youth Care (candidate) to read students files that have statements that generally reflect a negative trait of the student "He is very aggressive," or, "Autism is low/High on the spectrum. In a profession in which we care for individuals in a variety of capacities one can identify quickly this style of professionalism/or lack thereof impacts students. To broaden this topic slightly in order to reflect on students of colour and Aboriginal students, when they are not respected by professionals utilizing a "person first" dialogue/communication this impacts how others see them. We must translate the negative terms and labels and advocate for individuals we work with. For example if a student comes to school wearing baggy pants and a baseball hat I would not write that the student appears rude/disrespectful of authority, or shows conduct disorder etc. Where I am going with this is that our judgement of what we know/what we see should never impact a student in a negative manner. We must translate the negative labels into positive descriptions. Documentation on children/youth, working diagnoses, or current strengths, or areas of need must be written with a supportive perspective. Finally as Child and Youth Care practitioners we must ask ourselves when we don't use person first dialogue/written communication are we indeed continuing to serve our own purpose.
This has been a very interesting thread to read and I thank you all for your fantastic input. I personally will continue to use the person first approach as many have stated that first and foremost we are all people. The reason being is that I would not introduce anyone as "this is my catholic friend”, or “my gay client” or “my autistic friend” so and so, it is not for me to introduce anyone as anything but my friend or client. I’m all for people introducing themselves however they want!
Thank you for joining in everyone!
Yes, it is important we get rid of the stigma of labels, especially in practice! For this reason, in most cases, we use their names – not the labels they have been diagnosed with.
What the autism community is trying to say is, yes, autism is not
their choice like Catholicism. They were born with it. That is exactly
why they want to 'out' this label rather than hide it. They want us to
know that all their wonderful personal attributes are because of their
autism, not despite of it. It is their primary identity.
They want us to know it is not a doom or gloom life sentence that needs to be cured – like cancer for example. Autism is a life-long condition, with both positive and challenging characteristics that the individual must live with their entire life. They feel that making autism the second thing you know about the person actually reinforces the shame and stigma, not the other way around. By outing the label of autism as nothing to be ashamed of, I believe we take away the stigma and open opportunity for positive re-framing of negative attitudes.
I think what is most important here is to listen to the individuals and their families, have the conversation, and find out exactly what it is that they want. The autism community is clearly telling us that they prefer identity-first language. They are proud of their autism, as it is who they are. As my colleague Yvonne Bristow likes to say, autism is more like a fingerprint than a cold.
However, this attitude is not shared by all young people and families so it is very important to have this conversation with them to find out what they prefer. It is our responsibility to listen and respect the choice of young people, even if it challenges our assumptions and professional biases.
Here are a few resources that address this issue:
Person-first and identity-first language: Developing psychologists’
cultural competence using disability language.
Dunn, Dana S.; Andrews, Erin E. American Psychologist, Vol. 70(3), Apr 2015, 255-264. http://psycnet.apa.org/psycinfo/2015-03427-001/
They are important reads for anyone working with this population. Thank you all for the conversation!
This has been a really great conversation!
I’d hope then when using any type of language, we always inquire with the individual before we make assumptions on their identity. Many people do like to be referred to in person first language, but I think we also need to be mindful in understanding that many autistic people (and autism self-advocates) find expressions like “person with autism” or “a person who has autism” offensive. There are also those in the autism community who do prefer “person with autism”, so let’s make sure we are listening and respecting their individual preferences. As a young person I was working with yesterday put it, “autistic people are skilled, have unique interests, and have a lot to offer society”. He identifies as autistic and I completely support him and how he chooses to identify.
Keisha, I have completely removed high/low function from my terminology from my vocabulary since diving into neurodiversity research. I personally believe that this isn’t how we should describe people in any environment. You hit the nail on the head when you describe how terminology can be negative and so often inaccurate in describing the person. We are all complex and diverse individuals and should never be defined by one component of our diagnosis, culture, gender, religion or identity. I think we have a long way to go when it comes to Ableism, but demonstrating consistent and genuine respect towards these individuals and their wishes is a great place to start.
I have been impressed with the thoughtfulness as well. I want to clarify that I don’t think we should “avoid” descriptive adjectives when talking about people, because being catholic, or gay, or autistic, may be an important part of who they are. We just want to make sure that a single characteristic is not presented as the primary or only description of who they are.
A very great conversation indeed,
I am glad I brought it up. You all make very good points and Lorraine is absolutely right: looking at only one personal characteristic is so very limiting and can be stigmatizing. Keisha and Emily, you articulate very well the values of Child and Youth Care practice and the purposeful use of person-first language to reduce stigma, this is so important! Like many of you have agreed, it is important to let the person tell us how they would like to be referred to.
Thank you for listening to my side (and the autism advocates' side) of the story. Yvonne, thank you for helping to articulate it! Removing 'high' and 'low' functioning from our language is essential. It is not any easy task and I still struggle with this. I am getting better at it, though. I was sent this Youtube video yesterday that explains the spectrum like a circle- from the point of view of a young person diagnosed on the autism spectrum. Such a great little comic – check it out...
This is an interesting discussion, and one that is currently being hashed out in many different contexts all over the world.
Yvonne, your comments remind me of a situation I experienced a couple months back. Until then I had advocated strongly for use of people first language in all discussions. On this particular occasion, I explained the argument for people first language to my transgender friend as thoroughly and convincingly as I knew how. They listened very patiently and attentively, then put a hand on my shoulder and said, "Seth, you don't get to decide for me."
I realized that, as is often the case, the solution is not as clear-cut as we would like it to be.
I've enjoyed reading everyone's thoughtful comments.
I love your story and how patiently your friend waited to hear you out. Brilliant! Great example, thank you for sharing!