“You are more affected by autism than me”

My teenage cousin Lucy (not her real name) randomly said to me one day “I think you are more affected by autism than me.” Her socially inappropriate remark made me want to laugh. My immediate unconsidered thought was that Lucy was definitely more autistic than I was.

Instead of laughing, I tried to be tactful and replied “You can’t really say that someone is more affected than someone else because the strengths and challenges of each person with autism are different, like you are really good at music and I am really good at… other stuff” (I had trouble coming up with something specific and tangible in that moment). My conversations aren’t brilliant at the best of times.

Lucy was pensive for a minute and added “Oh yeah, I have meltdowns (and you don’t)”. Shortly after that, I found myself thinking that Lucy is a lot more observant than me and that I struggle to express myself verbally and so perhaps I am more autistic than her.

Then I realized how hypocritical and spurious it was for me to try to compare myself to Lucy. Autism or ‘no autism’, how can anyone compare themselves to another person in terms of their overall functioning; strengths or challenges? Not to mention the 20 year age gap between us.

Perhaps you can compare individual skills and talents but Lucy’s comment made me realize that I should reconsider using generalized categories of ‘high-functioning’ or ‘low-functioning’ with respect to autism. Why? Because descriptions of individual abilities of each person with autism is more accurate and respectful than categorizing their ‘functioning’ as if it applies to all their abilities.

I have recently entered the world of blogging and have been thrilled to find many autism and disability activists eloquently writing about concepts that resonate with me but I have also found it overwhelming. I have always been anxious about offending people and it is so easy to offend people when there is so much at stake. Nerve endings are raw and for good reason; for too long people with different abilities have been discriminated against unfairly.

I am happy to use whatever terminology suits people best because I care about how they feel but it is impossible to suit everyone when different people prefer different terminology. I visited a great blog site called ‘Yes That Too’ recently, where the blogger stated emphatically that she prefers to be referred to as an ‘autistic person’ and not ‘person with autism’ and this the case for many autistic self advocates who prefer identity- first language (I’d urge you to click on the link above to find out why). However, there are others who prefer to be referred to as a ‘person with autism’ (person first, autism second) and I am one of those people*.

We have many different identities. To me, I am me. I am Rachel, I am a collection of identities; autistic traits, neurotypical traits (because yes we have some of those too), roles that I fulfill, hobbies and interests that I have, opinions and beliefs. I don’t like having one of those identities taken out and put before my name or ‘personhood’ (after ‘person’ perhaps but not before)*.

With regard to my autistic identity, I am a person with a ‘more different than average’ way of thinking, I am a person with autism and I am autistic. It can be both ‘autistic’ and ‘with autism’. I like Judy Endow’s take on this (she wrote something even better than this that I loved but I can’t find it)*.

Right now, I would be ok with being referred to as an ‘autistic person’ blogging about autism or as a ‘person with autism’ blogging about autism but if it was in everyday conversation I would prefer ‘person with autism’. It would make me feel strange and uncomfortable for everyday people in my life to consider me as autistic first and foremost*.

I will adopt the language preference of whoever I am conversing with or talking about (because that is the respectful thing to do and I also ‘get it’) but generally for a wider audience, such as while blogging, I will mostly use person-first terminology because it fits the terminology used in journal articles that I often quote from and because it is more familiar for people with a basic understanding of autism and this is the target audience of my blog, those starting out on the journey. Ultimately and personally however, I am most comfortable with using the terminology of ‘having autism’ because I am comfortable with thinking of it as ‘having’ a different way of thinking** and because many people may not be able to see beyond ‘autistic person’ and see the whole multi-faceted person that I am; their equal. It’s a risk I can’t allow myself to take…yet. I’m only part-way through the journey myself*.

Aside from how one chooses to identify oneself, I’m now strongly convinced that categorizing people by their overall ‘functioning’ does not seem logical and could easily offend those who are categorised as ‘low-functioning’ or even ‘high-functioning’. Alyssa from ‘Yes That Too’ explains it simply but effectively “High functioning means your needs get ignored. Low functioning means your abilities get ignored”.

Addition

I’ve been thinking about how to explain how I identify with autism a lot recently especially after reading this.

“I have autism” or “people with autism” is at odds with most autistic self advocates. Quite rightly, autistic self advocates are furious when told they should not refer to themselves as “autistic” because it is not using person- first language. However, in their attempts to blog about the inappropriate and offensive way that they are told how they should use language to identify themselves they do exactly the same thing to me. How can someone say on the one hand that person-first language is a “logical fallacy” and then in the next breath say but if you are autistic you should identify how you feel comfortable?

One of the comparisons used to explain the limitations of person – first language is by comparing it to other identities to show how language is used differently specifically for autism (the premise being that the language used for autism more closely resembles the language used for disease states rather than for identities and autism is not a disease) so I decided to use the same approach to explain how I feel without having to include (much) logic.

My name is Rachel McNamara, it is the name I have had for as long as I can remember. When I got married I did not want to change my name because I identified with ‘Rachel McNamara’ and did not feel comfortable changing it. Whenever, I have to fill in forms, I tick the ‘Ms’ title but if I had an option I would prefer not to tick a title at all.

I prefer not to describe myself as a ‘straight person’ or an ‘Australian person’. If I was explaining myself according to my sexuality or nationality, I would say “I’ve only ever liked men (colloquial expression not meant to be taken literally) and “I come from Australia” because that’s the way I feel most comfortable saying it.

However, if someone said to me “I am a gay person” I would not feel comfortable describing myself with similar language. If they said “I am an Australian person” I would not feel comfortable describing myself like that either. I would refer to them that way because it is their preference but I would not refer to myself like that because it is not my preference. Similarly, if someone said to me “I am an Autistic person” I would refer to them that way because it is their preference but I would not refer to myself that way because it is my preference*.

If I was bringing the topic up with someone whose preferred language I did not know, I would say “I have autism” because that is how I feel most comfortable saying it. When writing about autism generally I will also say “people with autism” or “people without autism” because that is how I identify (I do consider autism to be part of my whole identity) so my preferred language extends to my general discussion of the topic. I dislike the rhetoric of ‘burden’, ‘disease’ and ‘cure’ just as much as the next autistic self advocate*.

The way I choose to use language is influenced by many factors but in the end it is my choice and based on how I feel most comfortable. It should not need a logical or facts based justification.

In the end, person-first language and identity- first language both come from a place of merit. You can use the terms and not apply the concepts behind them (which is not being true to the language) or you can not use the terms and still apply the concepts behind them. It is the concepts that are most important. However, it is important to be sensitive about adopting the language of the person who are communicating with because it matters to them more than you can imagine.

Notes

*A year on from writing this post and my preference is identity- first language. Why? Because of all the points others have made in favour of it, I have gotten used to it (change usually takes a while to get used to) and it is more congruent with activism. I consider myself to be an autistic activist.

** I also think of autism as a disability. It can be both a difference and a disability when the environment discriminates against difference as in the Social Model of Disability.

Image courtesy of Mr Lightman / FreeDigitalPhotos.net

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One thought on ““You are more affected by autism than me”

  1. Pingback: “You Are More Affected By Autism Than Me,” by Guest Blogger Rachel McNamara | My Puzzling Piece: A Glance Into MY Puzzling Existance

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