5 years ago I was writing about autism, but I wasn’t yet publicly identifying as autistic. I knew I thought I was, but hadn’t yet gone through the process needed to become comfortable saying it out loud where people would hear me. So, the first time I wrote about the discussion of identify first language as opposed to person first language was in the context of how I talk about my children.
I’m going to share that article here, and then at the bottom of it answer the question “why do you say ‘autistic’ instead of ‘person with autism’?”
First, here are the relevant parts of my article from 2013:
Why do I call my children “Autistic”?One of the debates that rages like a never ending tornado in the Autism community is over language.Should we refer to people diagnosed with “Autism Spectrum Disorder” as persons with Autism or as Autistic people?I have seen the argument that person first language is more respectful than identity first language before. Some people say that putting the disability before the person in language shows you don’t value the person, and that it means you see the disability more than you see them.I have also come across an argument that goes along the lines of “you wouldn’t call a person with cancer ‘cancerous’ so you shouldn’t call a person with Autism ‘Autistic’.”If you have been following my blog for any amount of time you will have noticed that I refer to my children as Autistic. As with pretty much everything I do, this is a conscious and deliberate decision that I spent a fair amount of time thinking through.While I was thinking about it I made sure to read what Autistic adults think about this. I value the thoughts and opinions of the Autistic adults I know very much. They know what it means to be an Autistic child and to grow up in a world that is not designed to support their needs. They also know what it is to be an Autistic adult, and they provide me with valuable insights that are helping me support my children as they grow and eventually become adults themselves. This is not something they are obligated to do. They are very generous in answering my questions, and I am very grateful to them for the time they give to help me learn and grow as a parent.So, what do Autistic adults have to say on this? There is a hint in the way I have been referring to them! As I listened there were three main issues I noticed.The first thing I heard them say was that it is important to respect the way a person wishes to identify. That is, if a person prefers to be referred to using identity first language, you should refer to them in that way. This is why I call my friends Autistic. If I come across someone who prefers to be referred to using person first language I will say they have been diagnosed with Autism or say they are “on the spectrum” instead. I tend not to use the exact phrase “person with Autism” though (unless they specifically direct me that this is what they prefer). The reason for this will become clear in the next few paragraphs.The second thing I heard them say is that they find person first language problematic for many reasons. To explain this I am going to use the words of Autistic writers, because their voices should be heard on this issue, and because they say it so much better than I could!Lydia, who writes the blog Autistic Hoya, has spent a lot of time looking into the issue of person first vs identity first language. Reading what she has written taught me that person first language is problematic because it feeds the idea that Being Autistic is something that can be separated from a person and that it is in some way bad. The key things she said that impacted on me are as follows:“In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity….. ““…when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.”““Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic. I am also Asian, Chinese, American, Christian, Liberal, and female.These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else. “You can read the whole of Lydia’s article hereand the second part of her writing on the topic here.NeurodivergentK, who writes the blog Radical Neurodivergence Speaking, taught me that arguing for person first language by comparing Autism to Cancer is just plain offensive. To both Autistic people and to people affected by Cancer.“Now, why I feel the autism/cancer comparison is disrespectful. First, it’s disrespectful to autistic people. We don’t have something growing in us attempting to kill us. We don’t have a “devastating disease” which, let’s face it, cancer usually is. We don’t require painful chemotherapy to stay alive. The cancer comparison is nothing but lazy writing and a way to promote funding to people trying to get rid of us.You know who else it disrespects? People affected by cancer. Ask anyone who lost a child to cancer-they’d have that child back, autistic, cognitively challenged, it wouldn’t matter. Their child would be changed (in some cases almost to someone not the kid they remembered) but they would have their baby back. Ask anyone going through chemotherapy if there’s anything worse than this. Hell no. Cancer is expensive, cancer is exhausting, and cancer KILLS. Give the families a little respect. Give the people who actually HAVE cancer a little respect. “You can read the whole article here.The third key message I got from the Autistic adults I know is that they prefer to be called Autistic. It is something they are proud of, and a part of their identity they want recognised in positive ways.
After reading what Autistic adults I wanted to talk to my kids. MissG is too young to be able to understand the issues around this topic, so I haven’t talked to her about it. When she is older I will. MasterL is old enough to begin thinking about it. I asked him how he would like me to refer to him, and he said, “by my name”, which is a really good point! After some discussion, when I was sure he understood what I meant he said “Sometimes I tell people I have Aspergers sometimes I say I am Autistic, but on the blog you can say I am Autistic”. And that is enough for me.My children are Autistic.
“why do you say ‘autistic’ instead of ‘person with autism’?”
I say Autistic simply because I am Autistic. I am not a person with autism. Autism is not a seperate part of me that can be removed somehow in favour of a better version of myself hiding somewhere underneath or behind it. I don’t carry autism around with me like I do my glasses, keys and wallet. I am Autistic in everything I do. I think autistically, I move autistically, I experience the world autistically, I interact with the world autistically. It is as much a part of me and as unremovable from me as my eye colour and my height. Similar to my hair colour, I can hide it from you for a while, but it will show again at some point. Autism can’t be cut out of me and put into a bag or box. I am Autistic.
I say Autistic because I am proud to be Autistic. I am not ashamed to be Autistic just as I am not ashamed to have blue eyes, wavy hair or freckled skin. I am proud to be Autistic, just as I am proud to be a woman, a mother and a sister. I am proud of my Autistic self, my Autistic children, and my Autistic community. We are a complex, vibrant, diverse, resilient, compassionate group of people. We contribute unique perspectives and we add value to the broader communities around us.
I say Autistic because it is an accurate descriptor. The word Autistic gives information about who I am. Admittedly, there is a fair way to go before everyone who receives this information will understand it in the way I wish them to. There is still a lot of societal misunderstanding about what autism is, so when I say Autistic, people still often think in negative ways about the information I am giving. I don’t see autism as a negative thing. It is neither good nor bad to me. I say Autistic proudly and deliberately for the opportunities it gives me to talk more about my life and my experiences, so that I can help people begin to see autism differently and more positively.
I say Autistic to make people think and to challenge the dominant conversation about disability. If I talk about myself unapologetically as a proud Autistic woman people want to know why I am not as miserable as they think I should be. I have been asked why I would allow myself to be labelled in such a way, I have been told not to let Autism define me, I have been criticised for not seeing myself as a person ahead of my disability. Using the word Autistic disrupts peoples thinking and challenges their perceptions and gives me a chance to explain my perspective.