Friday, September 27, 2013

Dear New OT....

Dear New OT,
it is more appropriate for me to say my children are Autistic than it is for you to correct me with “children with Autism.....” and then go on to say “or aren’t you at all concerned about being politically correct?”
Also, just so you know, if you are trying to compliment me, saying “you have done such a good job that she comes across as completely neurotypical” is not the way to go about it. 
If you are trying to compliment her, saying "she is obviously high functioning" is not a great way to do it, and makes me worry you aren't looking at her as an individual but rather as a stereotype, which in turn makes me worry that you are going to overlook the struggles she has. 
And if you want to impress me, or gain my confidence, try something other than “I’m trained in DIR so I can help with her sensory issues”.
You see, I don’t mind at all that my kids are Autistic. Yes, they are Autistic. Autism is not a flaw they have added to them that needs to be corrected. It is a part of who they are just as much as having blue eyes is. 
For the record, I see "politically correct" as a construct the majority uses to determine how the minority should be perceived and treated. Accusing me of being unconcerned with being PC is a compliment. Your interpretation of my stance as being bad is an insult given the amount of time I have spent thinking over the issue of how the language used to describe my children affects them. 
I have never, and won’t ever, do anything to train their Autism out of them. 
I have never, and won’t ever, attempt to extinguish behaviours my children find useful or calming simply because others see as them strange (unless of course they are dangerous!). 
And I am perfectly happy for you to play with my child and help her develop some helpful sensory regulation strategies- I’m pretty sure that I was clear that is my expectation when we met- but if you ever try to therapy my child to be “better” “fixed” or “less Autistic” you will not ever see us walk through your door again. My daughters only “issues” are that many people in society are unwilling to be accepting and make the changes necessary to support people who are not the majority, and that most people who assume because she can talk to them confidently also assume when she struggles with sensory overload she is just misbehaving. 
So you can help her with some strategies based on the information I give you rather than your assumptions about her, or we are out of here. 

Sunday, September 22, 2013

Functioning labels

Have you heard the term "functioning labels" in relation to Autism diagnosis? It refers to the tendency to call an Autistic person "high functioning" or "just an Aspie" if they don't seem "too badly affected by Autism" and to refer to Autistic people who are non-verbal or have trouble with toileting or who stim a lot more noticeably as "severely Autistic" or "low functioning". I guess people do this in an attempt to let others know more information about the Autistic person in question. However, I have a real problem with it, and in this post I will explain why.

When you start categorising into ability based on outward appearance, you put people into groups that do not accurately reflect who they really are. You minimise their struggles. You overlook their strengths. You make assumptions you have no evidence for and no right to make. 

But it is even more complex than that.

The best way to explain why I don’t like function labels is to let Autistic people tell you what they think of them...... 

Amy says 

“I am one of those autistics who were said to be hopeless. Doctors and “experts” were convinced that I would never make any progress in life, that my parents were better off sending me away so they could have one. The “experts” said I was “too low-functioning to learn”.
Of course, they were wrong. I am here, I have an independent mind, a fairly independent life. I taught myself to read and I am a writer. But I am still non-speaking and I look very disabled. I also need a lot of help with things that are considered simple by most people. Maybe that’s why the “low-functioning” label stuck. It happens to a lot of autistics like me.
The assessment is incomplete and based on parameters that were created for non-autistics, by non-autistics, not taking into consideration the neurological differences of autistics.”

“I am autistic, non-speaking. I am also labeled “low-functioning”. This label is a pre-judgment based on what I cannot do. It makes people look at me with pity instead of trying to get to know me, listen to my ideas.”

“ is very dismissive to call someone “too high-functioning to understand” as if they don’t have challenges, as if their autistic lives are just an adventure with a happy ending. Some autistics might be able to live independently and work; some have children and seem to live an ordinary life. But they also have moments when they might “lose” their ability to speak, ..... “

Alyssa says

“So, what are we defining functioning by anyways? We ALL have strengths and weaknesses. If I'm high functioning, you just ignore the weaknesses, and if I'm low functioning, you just ignore the strengths. Either way, we get hurt (and ignored!) 

Judy says

“In reality high-functioning and low-functioning are not real labels, having no definition, no skill set lists, and no diagnostic criteria. Yet these words are often used to determine opportunities that will be denied or extended to an autistic and in assigning the correct amount of personal responsibility and blame to an autistic for the way his autism plays out in everyday life. 

Ibby says 

“A person is not a function.  A person is a person.” 

and there is a great story that goes with it

Nick says

"Without the fictive reference point of “normal,” functioning labels – “high-functioning Autism” and “low-functioning Autism” – are also revealed to be absurd fictions. “High-functioning” or “low-functioning” compared to what?Who gets to decide what the proper “function” of any individual human should be?"

Square 8 wrote a great piece called “I am Joe’s Functioning Label”

You can also find the content of this post at the Facebook Page Parenting Autistic Children With Love And Acceptance where I help with moderating. It's a great page for those wanting to get involved in discussion about respecting Autistic people and listening to their voices on issues important to them.

Sunday, September 8, 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?

The question has a reputation for dividing opinions and groups, and for that reason I have refrained from writing about it previously. However, last night someone made a visit to my Facebook page to correct me on my use of language in the name of my blog. Her argument was that I should be using what is known as “person first language” when I refer to my children. She suggested the blog should be called Amazing Adventures parenting children with Autism. She also implied that my current use of language is an indication that I do not respect my children. So, I thought it might be time I wrote about this. 

I have seen the argument that person first language is more respectful that 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’.” In fact, this one was levelled at me on my Facebook page during this week just gone too. 

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 hold a wisdom I cannot have, as I am not Autistic. 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 here 
and 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.

I could go on, but that’s enough for one post, I think. 

I am more than happy to answer honest questions on this topic, and to provide more links and information for people genuinely interested. I will not be engaging with people who comment in order to correct me or make deliberately inflammatory remarks. This is my opinion and I have come to it after much thought- I won’t be changing because someone picks an online fight with me, and I won’t be subjecting my readers to that sort of comment either. 

Friday, September 6, 2013

Murder is not acceptable

Tonight a 14 year old girl lies in a hospital battling the effects of carbon monoxide poisoning because her mother tried to kill her. And all over the place I see sympathy for this mother. Do you know why? Because her daughter, Issy, is Autistic. They are saying they feel empathy for her. Because her daughter was aggressive and hard to live with. They say it is because she was failed by the system. Some say they can understand why she did it. 

I can't. I can't understand at all.

Can you imagine how it feels to be an Autistic person reading these proclamations of sympathy and support for the mother who attempted to murder her child- a child who is much like they were as children? 

Can you imagine how my children would feel if I told them that there is a girl fighting for her life because her mother tried to kill her and that people feel sorry for the mother because her daughter is Autistic- like them? 

I won't tell them, though. My children live in a house where they are safe from this news. Where they are safe. They do not need to know about this. And I hope that by the time they are old enough that they will be exposed to the news without my filtering it, that the world will have changed to be a place where murder is unacceptable no matter what. 

Please, please, please do not stop to comment here if you want to justify, explain to me, or in any other way support the murder or harm of Autistic children by their parents or carers. Please don't. 

My heart is broken for Issy. She deserves better.

Here are some links to what some others are saying on this:

Thursday, September 5, 2013

Opinions, online etiquette and Autistic safe space

There has been very little "drama" on this blog and its Facebook Page in the 18 months or so that it has been here. I love that!

I am noticing a shift in the way people interact on blogs and Facebook Pages, though. I am seeing a lot of arguing, accusing and just straight out poor behaviour (not on this page!). People seem to feel that they should come onto a blog or page and make sure that things are "democratic" and that "free speech" is upheld. It seems to me, however, that these things are code for "I disagree with you and I want to be able to do that loudly and rudely on your blog/page without you asking me not to". And I would disagree that that is what blogs are for.

The fact is that it is impossible for a blog to actually be a democracy. It is not even possible for a blog to be unbiased. A blog is a collection of thoughts and opinions put together by a person who has put time and effort into deciding what they think, believe and value. In my experience a LOT of time and effort goes into this.

In my social circle, and throughout my life, I and the people I have interacted with have worked on the assumption that it would be rude to walk into someones house and start to criticise them or what you think you know about them.

I feel it is the same with interactions on blogs and on Facebook. A blog is like someones house. I would not go to visit a blog that I can see holds different values and opinions than I do and expect them to welcome me if I begin attacking them or the things they have written on their blog.

Likewise, if I post something here I would hope that people would recognise that this is my blog, where I post things I agree with, value and support. I would hope that people would respect that and refrain from being rude, or aggressive about their disagreement.

In the past I have purposely avoided posting on topics that I know can be divisive. This has been because I have not felt up to the task of having to moderate the blog heavily.

These days I am learning a lot about how important it is to be up front about what I believe. I am learning about the importance of there being places that are safe for Autistics to visit online. I want these places to exist for my kids when they are older.

To this end, you will start to see more open discussion of hard topics on this blog. You will notice me intentionally opposing some view points. I am working towards creating a space where it is safe for Autistic people to come- where they do not have to worry about seeing comments that make them feel they are seen as anything other than wonderful just the way they are.

It will be a work in progress. I am still learning. I am listening to Autistic adults. I am listening to  my children. I am figuring out where I may have contributed to hurt in the past and endeavouring not to do that again.

I hope that you will want to come on this journey with me.

Of course, if you find that you disagree with me and you are no longer comfortable here, that is fine. All our journeys are different. I will not be upset or offended if you decide to unlike the page and stop visiting the blog. I am not here to be popular or to chase after "likes". I am just here learning and documenting the journey.