Posts Tagged ‘autism’

The lies we tell

Recently the New York Times posted an article titled The Kids Who Beat Autism. (Predictably, ASAN is questioning both the possibility of ‘recovery’ and the desirability of it.) I’ve mentioned before how I felt lied to as a child by the idea that the best way to make friends is to “just be yourself”, and this story and the reaction to it highlights why.

See, “just be yourself” is good advice–you can’t make a true friendship if you’re pretending to be someone you’re not, and self-acceptance is healthier than self-loathing. And I’m sure that all the people who give such advice truly mean it. Culturally, though, it only seems to be held as good advice for people who are sufficiently normal, which would also be the group of people least needing such reassurances. For those of us who are too different, that’s not how it seems to work. Instead those differences become something to label, treat, fix so that we can be more like other people. We get told to be ourselves just as much as anyone else–but the way we’re treated tells us that being who we are is not acceptable.

There are times when differences do need to be addressed because they are causing problems in our lives. The question, though, is what is the best way to temper or eliminate those challenges. Sometimes the work is something we have to do ourselves. Sometimes, the work is best shared or done at a structural or cultural level–it is far more reasonable to install a ramp than to ask a wheelchair user to navigate a flight of stairs, for example. And sometimes the only challenge is that those differences highlight that we are different. A lot has been said in the autism community about attempts to eliminate stimming, which frequently causes no problems other than the fact that other people notice and are uncomfortable with it. Or (lack of) eye contact, which is a very culture-specific demand to begin with. Why should anything be done about something so superficial? The problem is that often most or all of the work is demanded to be dealt with at the individual level, putting all the onus on the person who already has it hardest and sometimes bringing no benefit to that person at a personal cost.

As a culture we talk a lot about being tolerant of individual differences. In practice though, difference is often considered unacceptable. Instead of asking people who are struggling to spend precious effort on being “normal”, how much better would things be if we were actually as accepting of difference as we say we should be?

Intimate knowledge

Ever feel like your life is being appropriated for someone else’s agenda?

I’ve been involved in a conversation elsewhere about whether or not to vaccinate your children, and–big surprise–the conversation turned towards autism and vaccines. I kind of knew that it would be a bit of a trainwreck going in, but vaccination is important to me as a community health issue, so it was hard for me to stay out of it. As things became more and more autism related, a couple things happened, both of which struck me as being on some level fundamentally wrong.

1) As things became more and more autism-centered, I felt less and less like I should be contributing to the conversation. Let’s let that sink in for a moment–I felt out of place participating in a conversation that was partly about people like me. It’s hard for me to really pin down why that happened–maybe because I’m fairly mildly affected, maybe because I didn’t feel I’d be listened to, maybe because I didn’t want to have to drop the information that I’m on the spectrum because I didn’t think it’s truly relevant to the argument–but the fact that it happened at all bugs me.

2) A person on the other side commented that ze typically would asked people if they knew a child with autism before getting into the conversation, saying that ze wasn’t interested if you didn’t have ‘intimate knowledge’ of the condition. While I will acknowledge that this person is more familiar with it than most people, it was the term ‘intimate’ that bugged me. I’m on the spectrum–I live with it in a way more intimate than this person possibly can, and it felt like ze was appropriating an experience that isn’t truly hirs. And it struck me as one of the ways that autistic people, particularly adults, are frequently de-centralised from conversations about autism. There’s a lot of stories from the perspectives of parents and caregivers talking about the struggles they’ve dealt with, how hard it is to have a family member with autism, and I don’t want to discount that it does profoundly affect their lives. But there are far fewer stories that look at what it’s like to be autistic, and when someone does try to get inside of that experience it tends to be in a fairly clinical way, not from a perspective of personal experience. It’s largely the families of autistics who drive the conversation, making autistics themselves secondary characters to the stories of their own lives.

I also noted that the person used the word ‘child’, not ‘person’. Since the conversation tends to be driven by parents, it tends to be centered on issues about how to help children, since that’s their particular concern–sadly, this isn’t confined to the autism community but extends other disability communities as well. While there’s been some advances in developing programs to help children transition into adulthood, there really isn’t much out there once you’re past school age, and those transitional programs aren’t helpful if you’re already an adult when you get diagnosed. Being diagnosed has been helpful in connecting me to a community about people like me, and I try to contribute by relating my experiences, hoping to help improve the lives of those behind me. It doesn’t feel like much, and I often wish I could do more. It’s hard to feel too guilty about doing so little, though, because the truth is that the community offers me even less in return. Autistic children tend to get de-centralised from the conversation, but autistic adults are almost entirely invisible.

If I can’t fit in in spaces that concern people like myself, where can I belong?

Where credit is due

I’ve come across several several blogs posts the last couple weeks about how autistic children are taught and forced to comply with the demands of adults, all having the conclusion that too much focus on doing what is expected is bad for the autistic person (short reason for that: abuse). One writer speaks of being forced to hug her molester lest she ‘hurt his feelings’, another of learning to suppress her pain until she is no longer aware of her own emotions. Both of them suffered because teaching them how to behave properly was more important to their caregivers than understanding why they were behaving in the ways they were to begin with. And several times between the various articles I read on the issue writers asked the question, “is this how we would teach a neurotypical child?”

The thing is, I’m not sure the answer is ‘no’.

I see this with my niece from time to time. If you tell her why she’s being punished and ask her if she understands, she will reply, “Yes.” If you ask her to repeat back to you what she did wrong, you will be met with silence. She has learned the answer expected of her, leaving me unsure whether or not she means it or if it’s a rote response. The prod is kinder, but she’s still learning the type of behaviour that is expected of her and how to comply with it, even if it lacks the harm that often comes with teaching an autistic child to ‘behave’. And really, knowing how and when to comply with the expectations of others is part of living in a society. It’s a skill we all need sometimes. We’ve had a person recently ignoring the DM for our Dungeons and Dragons game, the person telling him to “sit down, shut up and stop naming your character Robert E. Lee”. In this case, his lack of compliance made the game virtually impossible to run, and ignoring authority had negative consequences not only for him but the rest of us as well. Yet at the same time, sometimes a person is being ill-behaved because of some discomfort or harm, and understanding the cause of the behaviour is key to not causing more discomfort or harm.

It’s often said that we tend to give kids and people with developmental disabilities too little credit. This is true, but it doesn’t negate the possibility of given them too much credit as well. Another autistic adult commented on being thought to have higher communication abilities than ze really had, because ze enjoyed watching Discovery and had a large vocabulary, but there were also deficits in hir ability to understand in other areas. So hir parents and teachers treated hir as having greater understanding than was actually present based on the areas where ze had greater skills. When my niece says, “Yes,” it’s easy as an adult to hear, “Yes I understand what I did wrong.” But she’s young, and I can’t stop suspecting that maybe the answer she’s giving is not one of understanding the question, but one of knowing the desired answer. And if the truth is the latter, I wonder what she’s really learning from the experience.

From Equality Sets Us Free to “I wish I didn’t have Aspergers’

Don’t.

Don’t worry about how things could be. Don’t try to change who you are. Don’t wish you were something you’re not. That way lies nothing but pain and sorrow. Because the only thing you can do is fail. Fail at being ‘normal’. Fail at ‘fitting in’ with people who won’t accept you as you are. Fail at being someone that you simply are not.

Things suck. I know. We’re told all the time that we live in a world where everyone is treated equally. We grow up with stories about overcoming, and making friend by being ourselves, and then we find out that the world isn’t really like that and you can’t be accepted for who you are.  And that hurts.

But the problem isn’t you. If it was, then there would be advice I could give you to make things right. And there isn’t. There is nothing you can do by yourself to make things better. You can try, you can learn coping mechanisms, and learn how to act ‘normal’, and it’ll help. But you will always, always fall short. And that’s because we live in a world that simply isn’t accepting of differences. It isn’t enough to ‘pass’, because that means hiding something of who you are, and that does a number on your self-esteem. It’s you living the belief that there is something wrong with you, and how can you ever be truly happy with yourself if you believe that?

We live in a world that is, when not actively hostile, passively resistant to accepting different ways of being. But that can be changed. Autism can’t. And it doesn’t need to be. We all have our strengths and weaknesses, our talents and limitations. There is no reason that some should be ‘okay’ and some should be signs of brokenness. Why is it okay for a person to be bad at doing math, but wrong for them to be bad at understanding body language?

Don’t try to change what cannot be changed. Accept it, understand it, and from that beginning we can work towards making a world where simply being different isn’t a barrier to inclusion.

(Repost) Outrage for Akian: It’s about dignity

Because apparently kids aren’t cruel enough to each other. It’s frustrating enough when teachers are unable or unwilling to help a bullied child, but when the teachers are actually doing the bullying…it’s too messed up for words. Reposted from jillsmo at Yeah, Good Times.

 

Note: Feel free to reprint this post anywhere you like, just please include the links to the sites I have at the bottom. I don’t need to be credited for it, but Stuart does.

I know I said I was tired of talking about autism, but this is something I just can’t stay quiet about.

I’ve spent a lot of time here talking about how one of the most frustrating things about autism, for me, is that when Child 1 is upset, he has so much trouble telling me why, that oftentimes I just won’t ever know. When he comes home from school upset, which luckily doesn’t happen often, I will do anything and everything to try to find out why.

Can you imagine if your sweet and happy autistic child started getting aggressive at school for no reason, how much you would try to find out why? Do you know the lengths you would go to for your child? I would do whatever it took, I can tell you that. Whatever it took.

I saw a video today, posted on reddit. It was of a father whose sweet and happy autistic child, exactly Child 1’s age, suddenly started getting aggressive and violent at school and he had no idea why. They had IEP meetings, they met with a Behaviorist, he worked the system just like he was “supposed to,” for 6 months. But when he got nowhere, he played a hunch, put a wire on his kid and sent him to school to record what happened there.

It turned out that his son, Akian, was being verbally abused by his teacher and aide in his classroom. I’m posting the video below, but I have to warn you that it is VERY upsetting. I had a hard time getting through it all, but I will sum it up for you.

It’s mostly Akian’s dad, Stuart, describing what happened, and you also hear some of the recording of the horrible things those people say to him.

They called him a bastard. These adults, whose job was to protect and help and teach children… they laughed at him, made fun of him and called him a bastard.  I’m horrified by this.

Stuart turned his recording over to the school district, and also the media. An aide was fired but the teacher was not. The school district has said that it has handled the matter appropriately and apparently they think the matter is closed.

Stuart doesn’t think the matter is closed. In the video he says directly to the adults involved: “I want a public apology for what you did to my son. I want your full name out. I want you to come forward. I want you to take responsibility for what you do and then I want you to resign…. Not for me, but so one day I can play this video back for my son and say, ‘Akian, you didn’t deserve anything that happened to you. These people are at fault.’ I’m not looking to sue anybody. I’m not going to file a lawsuit. It’s not about money. It’s about dignity. This is to reclaim my son’s dignity. You owe it to him.”

Let’s help him get the word out. Below the video I’m posting some links where you can get more information

No More Teacher/Bullies A webpage set up to explain the video and the situation
No More Teacher/Bullies on Facebook
Stuart’s email address

Why I don’t hate autism (or, it’s Autism Acceptance Day!)

The back-and-forth between autistics and autism parents has been going on for a while now, and has been quite pronounced in recent weeks. The conversations tend to go like this:

Parents: We hate autism.

Autistics: Stop telling your kids you hate them!

Parents: We don’t hate our kids, we just hate their autism.

Autistic: You can’t separate the autism from the person.

There’s also often a tangent about hating autism because it is making their kids miserable. Which I can understand, because we all hate things that make ourselves or our loved ones miserable. For instance:

I hate that we live in a world that preaches tolerance but doesn’t practice it.

I hate that any deviation from ‘normal’ is considered to be ‘lesser’.

I hate that I live in a country where people attempt to encourage independence by tearing down the social supports that allow many people to actually be independent.

I hate that bullying is often dismissed as a ‘rite of passage’ and ‘kids being kids’.

I do not hate autism or being autistic, any more than I hate being female. Both are aspects of who I am, things that have shaped me from birth onwards. I hate that life is often harder for me because of those things, but that is not intrinsic to those aspects of my identity. Rather, it is the society I live in that causes me misery, a society that tries to create one-size-fits-all answers to problems, that tries to force every person into the same narrow mold. And every person who says that zie ‘hates autism’ is reinforcing the very power structures that cause me and thousands of other people needless suffering.

I do not suffer from being autistic. I suffer from living in a society that refuses to let me be anything other than ‘normal’.

To be or not to be

Happy (belated) MLK day! Today’s post is going to be about minorities, but not the type you’re probably thinking of. No, today I’m going to write about the constant question that invisible minorities face–whether or not to let others know about their minority status. This is an especially difficult question for people with disabilities that aren’t immediately obvious, because asking for needed accommodations intersects with the decision to disclose their status.

Since I’ve been diagnosed as being on the autism spectrum, I’ve wrestled with the question of how open about it to be. For the most part I’ve kept quiet about it. Partly this is because my own difficulties are minor, so I don’t really need to ask for accommodations, making my autism something of a non-issue. There’s also an ideological component as well, because if I do need accommodations, it shouldn’t matter that I’ve been diagnosed as being autistic, just that my needs aren’t being met.

The last part, though, is a desire to not be defined by my austism. It’s not the whole of who I am. On the other hand, though, it has always defined me in some way. The troubles I had growing up were a result of being autistic, even though I was undiagnosed. Not knowing didn’t stop those traits from being apparent to the people around me, nor did it cause them to treat me with any more respect.

In some ways, the diagnosis has been a relief, because it gives me a way to not only see how I’m different, but figure out how to cope with my differences. It has also been a way to connect with others who have dealt with the same issues I have, which has been both uplifting and a confirmation of my deepest fears. It’s nice knowing that I’m not alone, yet I’m also looking at reflections of my own experiences with not being accepted because of being different. I fear being open about being autistic because of those stories. And it sucks, because I feel like I’m hiding something. I don’t like hiding something that I’m not ashamed of, and I hate that I have to consider the possible ramifications of being open about it. The burden of not knowing why I was different has been replaced with the burden of knowing why I’m different. (Don’t get me wrong, I vastly prefer the latter, but the fact that it’s a burden at all strikes me as fundamentally wrong.)

Ideally, none of it would matter. My differences, and those of others both like me and different from me, would simply be accepted the way our culture so often claims to do.