Forgive my language straight up, but to answer the above question – fucked if I know, for sure.
But I’m going to talk about it anyway 🙂
Note: This topic seems to be going off in social media of late, and I am trying to read and appreciate all sides of the debate. However, I am in the beginning of understanding it all fully, so this post is the beginning of my evaluating it all. I accept all comments on my blog, whether I agree with them or not, and I also allow people to post comments anonymously so people can feel free to state their opinion without fear. If you disagree, I value your input, even if I don’t agree with it. Which is not to say that I won’t challenge it ;-). This post is to start a discussion, and to document where I am at on this particular day with my observations and thoughts. It is not a final anything on the topic.
There seems to be two parts to offensiveness of late: whether or not to say “Autistic person” vs “person with Autism”, and the great divide of NT parents vs ASD parents vs people with ASD when it comes to talking about children on the spectrum.
ASD – Autism Spectrum Disorder
NT – Neurotypical. This in itself is troublesome to some people who are not Autistic, however do not define themselves as Neurotypical either, for instance, people with a mental illness. The term “nautistic” is sometimes used to referred to “NT’s” – it means non-autistic. As it is still a relatively new term, and as I’m still in the process of switching over to it in my own brain, and as I need to use terminology I am used to for this blog, which is taxing enough in itself, for this blog, I will continue to use NT. Some days, we just have to take one step at a time.
Which sort of brings me to the first of the offensiveness debate.
Person first language is all the rage in disability circles. I was recently in the staff room as a Special Education School, and there was a big poster on the wall about it. As someone with a physical disability, I get the concept – the disability shouldn’t define the person. We are people first, who happen to have a disability. The disability shouldn’t define who we are. I do admit that I have never had anyone try to put Ehlers Danlos Syndrome in front of “person” to try and define me lol… nor did I grow up knowing I had EDS… so while I “get it”, I don’t have the experience that others do with it either. So possibly these things don’t piss me off as much as they should.
That said, I would hate for people to see the EDS first, and consider that more important in defining me than who I am as a person. A lot of disabilities have very negative connotations (think of the R word) and I can’t imagine what it’s like for people to refuse to see past that when dealing with me. I get a glimpse every now and then, and that is horrifying enough (the glimpse isn’t horrifying – imagining how bad it could actually get, and realising how lucky I am, is the horrifying part).
So it is then, that people have started to insist that we use “people first language” when talking about people with a disability. Particularly in the media, who have always been pretty bad when it comes to disability reporting – even the fact that most of the time, the disability isn’t relevant, but is included anyway, is seriously disturbing, but I suppose that fight will have to live for another day.
When it comes to people first language, people with Autism have started having a different view however. As Autism blogs and websites and organisations have started to insist on people first language, Autistic advocates have started to disagree – sometimes very loudly. They insist on being called an Autistic person.
People first language puts the disability to the side, because disability is usually seen as a negative. People with a disability are not “normal”. They are defective when compared to the image of the average human. And so the disability community has decided to stop being defined by their disability.
From my own observations, most Autistic people do not see themselves as disabled. NT’s see us as disabled (generalising here I know). However we do not. We see ourselves as different. There are disabling aspects to Autism, sure, and health problems to boot a lot of the time. However this is separate – a side-effect, rather than the base condition. The side-effects can be managed, and some can even be eliminated – the Autism can not. The Autism is always there. The Autism doesn’t change. The Autism is our very personality. And so it is that we are Autism. Autism is us. And trying to pull us apart is offensive because it is telling us that there is something wrong with US. It does exactly what it is trying not to do.
Think of it this way… Imagine we started telling all introverts that there is something wrong with them, and that they had to start being extroverted. Imagine we started putting them all in therapy to change them, and organised fundraising to “cure” them. Indeed, in some circles, being an introvert is still seen as being a bad thing, however we have never seen it as a disability, but as a difference. I see Autism as being the same – it’s a difference. The only disabling thing about it are the side-effects, and a world that wants me to change to suit it, instead of changing itself in order to sometimes accommodate my human right to be who I was born to be.
Sometimes accommodate. I’m not asking for the world to change for one minority group. I’m asking for the odd concession here and there. To equate it to physical disability, I’m not asking that stairs be removed altogether, but I’m asking for ramps to be alongside them. I’m not asking for the music in shopping centres to be turned off completely, but rather that it be turned down so I can stay for 30 minutes instead of 5. And bet your arse that if I have a need and providing that need harms no one and does not affect anyone else’s life other than the fact that they are a little put out (for instance, if I am in a meeting and need to have a five minute break, then the meeting goes on, I don’t expect it to stop just for me, but they remember to fill me in on important points when I get back), then damn straight, I expect some accommodation.
Personally, I am more comfortable with the idea that Autism is a part of who I am as a person, and so I have no problem with being described as an Autistic or Autistic person. However, I also do not have a problem with people first language either, simply because I have bigger problems, so it is more what comes before and after the descriptor that I am worried about. The context of what you are saying is far more important to me.
I would suggest that if you are not sure of where someone stands, ask them. If you need to err on the side of caution, the consensus with Autistic people seems to be “Autistic person” rather than “person with Autism”. And at the end of the day, if someone is going to get REALLY annoyed at which you use, if you are trying your best and not being deliberately offensive at all in any other manner, then it is probably their problem, not yours.
As an Aspie (yeah, that term is ok by me too – I love it in fact – we are the Aspie House here 🙂 ), I find it frustrating that there is no definitive answer yet, but as yet, there is no definitive answer. So… go forth, and good luck lol… And try to find comfort in knowing that even people with Autism are getting their bums spanked on this one still – the tide is turning, but it ain’t there yet.
The second main point of offensiveness is that of opinion. Who has the right to one, and in what exact area do they have a right to it.
Autism parent bloggers (APB’s) seem to be a world of their own. These are NT parents who write about what it is like to have ASD kids. They fall into two general groups – those that listen to adults with ASD and/or see ASD as a difference and not a disability, and those that don’t.
Those that don’t are the parents who generally bitch about their children far more than they rejoice in having them. Some of them also write articles for various media outlets, and they are pretty easy to find if you dare to look.
Tonight, I noticed a poem on Facebook that was shared by a dear friend…
It’s pretty sweet, if you’re into that sort of thing. I guess.
I found it pretty offensive.
“Hear the prayers of a mothers lament…”
Lament. To grieve or mourn.
Autism is who I am. Am I really that bad that I need to be grieved? Is having me in the world something to mourn?
Is that what they meant? I imagine they would say no. I imagine they would say “I mean that I am grieving for the child I know is lost to me.” I imagine this because of the following lines of “We don’t know where this child went, Lost in a world that was never meant.”
That child is right in front of you. It is you who is failing to appreciate who they are. It is you who is failing to recognise that your child isn’t lost in some different world – they are simply different to you in this world.
Grieving for a child with a disability is offensive enough, however grieving for a child with a difference is outright cruel. To the child, and to anyone with the same condition who is reading about it.
If you are unsure, imagine that they will read it in twenty years time. It’s the internet, and the internet is forever, like it or not. So it is not out of the realm of possibility.
These types of NT parental bloggers also seem to use the terminology that they are “living with Autism”. They are not. They are living next to Autism. They are living in the same house as Autism. Their child is living with Autism. Their child is a person, not a thing, and they have a right to own their own difference. If your child had heart problems, would you say you were living with a heart problem? This is also offensive to people with Autism. We are not something that is being done to you. We are people. We just happen to be different in neurology.
I am the parent of two children on the spectrum. I get that parenting children on the spectrum offers different, and even possibly more, challenges than standard parenting. I do not treat my children as “Autistics” though – I treat them as children, both in real life, and when talking about them online.
After homeschooling N most of last year, he has gone back to school this year. The transition has been remarkably smooth considering, however it has had it’s bumps in the road too. His teacher and I have been emailing each other regularly, and I have even been given his teachers home number in case I need to talk to him (bless his heart!). I talk about these things to others, however I talk about it as any parent would talk about it.
Example: N had some problems with taking a class discussion too literally, to the point that he had to have a day off school. I can, and have, discussed the issue with his teacher and with friends without bringing Autism into it at all. At. All. The words Autism or Aspergers have not entered the discussion. Perhaps, if his teacher was not aware that such literal interpretations were a part of Autism, I may have needed to explain this, however aside from that… there is simply no need.
Our lives do not have to be defined by Autism any more than any other person’s life has to be defined by being an introvert, or being sporty, or having curly hair.
How is this different to accepting that Autism is the whole person? How can your life not be defined by Autism while at the same time, Autism is the very essence of who you are?
Consider these statements I pulled from a random blog:
“I don’t like anything about Autism.”
“Dealing with the crap that is Autism.”
“In this crazy journey.” (Speaking of parenting a child with Autism, not parenting in general).
These statements are not made by someone who is parenting a child who happens to have Autism. These statements are made by a parent who sees Autism first and their child second. Or their child first and Autism second. She sees them as separate, and then everything she talks about negatively is due to Autism. It is not due to personality, or having a crappy day. It is due to Autism. Good days are “despite” Autism, and not a part of Autism.
“N is having a meltdown of epic proportions and if it doesn’t stop soon, I’m going to have to start up a drinking habit!”
“N is having a meltdown of epic proportions, the like of which can only be seen by kids with Autism. If he doesn’t stop soon, I’m going to have to start drinking. I hate Autism.”
The first is talking about N’s meltdown, and I talk of the meltdown stopping, not him. The second is talking about “kids with Autism” and how much I hate Autism. The first is talking as any parent might in a moment of frustration, and it is something I would have no problem with my son reading when he is older. The second is specifically blaming Autism for the meltdown (which could have been caused by something external, e.g. sensory issues or frustration at something, rather than Autism), specifically blaming my son for my impending drinking problem and states that I hate Autism, and will read to someone with Autism as though I hate my son. I would hate for him to read something like this, ever!
Note: Blogs and articles that are written for the specific purpose of informing and helping other parents are a different category. I am talking of diary type writing, not informational pieces.
I know that these parents need to vent and that is fine. However I urge them to do so anonymously if they think what they are writing would hurt their child if they read it, or would hurt other people with Autism. I urge them to think about what it is they are writing and what message they are sending.
Another offensive aspect of parent bloggers is that quite often, they want people with Autism to shut the hell up. Not surprising, it is the most offensive writers that make the most noise about how much they know about Autism, and how Autistics should stop trying to tell them about their child.
Not once, have I ever seen an Autistic try to tell a parent about their child. No doubt it has happened, but I have no seen it yet. I have seen many many many NT parents tell people with Autism that those people with Autism know less about Autism than they do. Indeed, in one real life setting, I have a NT mother tell me she knew more about Autism than I did because she had a husband and a son on the spectrum. Seriously, there really are no words. I really don’t get how she got to that conclusion.
Anyway… What I have seen over and over again, is someone with Autism explaining what it is like to have Autism, and an NT parent assume that the person with Autism is trying to tell them how to raise their child.
Nope. By and large, we are a literal species – if we say “this is what it’s like to have Autism” that is exactly what we mean. There is no hidden message there that we know their child better than they do.
We DO know Autism better than they do. Accept that, deal with it, and move on. Of course we do. We live with it. They do not. They live next to it, but that is not nearly the same thing. I live with three people who have a penis, but I have no idea what it’s like to live with one.
I have already gone through the whole “but my kid is worse than you” debate in a previous blog, and will do another one in the future aimed at that topic. I think it deserves it’s own space. Just to be clear though – 1. I am an adult. A child is a child. Naturally I am going to be “better” than a child – they are still just starting out their life journey. 2. I may write and speak today, in this moment, but that doesn’t mean I don’t know what it’s like to be non-verbal. And the same goes for all the other aspects of ASD.
I may not know what it’s like to be anyone else’s child, even my own! However I do know what it is like to have Autism.
A third extra thing (just for shits and giggles) that is offensive that I have found while looking around the internet tonight is – people who state that everyone has a bit of Autism in them.
I have seen this used in two different ways. The first, and possibly most disturbing, but also easiest to just write off as foolish and forgotten, is the person who sees Autism (well, specifically, Aspergers) as being cool. They have an image of somebody who is different and gets away with it, someone who is free to be themselves and who is usually bright and funny to boot. They actually wish they had Aspergers.
Well, we ARE bright and funny ;-), but I don’t know where they get the rest of it from… which is probably why it’s so easy to write it off as foolish.
I’m glad I have Aspergers. Now. I’m glad now. I’m glad because it is the best tool I have to help my kids through their childhood. I’m glad because it means that I found my husband, someone who clicks with me like no other ever has. I’m glad because I like being quirky, and having Aspergers gives me a reason.
But mostly I’m glad because it gives me a reason. A reason for all the crap, all the hurt, all the abuse. It gives me a reason for why I lost my childhood and twenties. And with that reason comes healing.
The second and more prevalent reason I see people use the “we all have a little Autism” line is that they feel everyone does have traits of Autism and stating so will make us feel more included and therefore will make us feel better about being who we are.
First of all, being who we are isn’t that terrible when people accept us and let us be who we are. Secondly, being included means people accept us and let us be who we are – it does NOT mean changing to fit in to the NT world. Third, everyone has traits of Autism just like everyone has traits of Downs Syndrome.
Do you have a short neck? Small ears or mouth? Weak reflexes? Poor muscle tone? Weak joints? Any other of the over 50 very generalised traits of Downs Syndrome? Probably yes. It doesn’t mean you have Downs Syndrome, and relating yourself to someone with Downs Syndrome is incredibly offensive.
Just as it is offensive to insinuate (or even downright state, as some do) that we are all a little bit Autistic.
Being organised (for example) doesn’t mean you have a little bit of Autism any more than eating Chinese in Australia means you have a little bit of Chinese in your blood or know what it’s like to be a Chinese farmer living 50km west of Beijing.
I know it is meant as some sort of solidarity bent, and in every day life, I laugh it off as such, however it invalidates everything I have been through, and everything I still go through (the pain, the hurt, the abuse). To you it may be a sign that you accept me, but I hear “I am the same as you” which then translates to “why can’t you be like me?” and then translates to “well, seeing as we are ALL Autistic and WE don’t have any problems with A, B or C, then why can’t YOU just get over it and be normal?”
The sun is coming up, so it is definitely time for bed. Please feel free to discuss any of this – like I said, this is just the beginning of my thoughts and it is still a relatively new area in general. It certainly deserves discussion.
I hope everyone is doing well 🙂