Tuesday, March 6, 2012

Autism - The Politics of Hate and Cure


This is bound to be a controversial post and I'll probably offend at least a few people out there. It's not my intention but it's probably inevitable so before I begin, I want to apologize - it's nothing personal okay.


At the same time, I'll admit that I'm not entirely qualified to say what I'll be saying here. My kids can use the toilet though I often say that my boys are stormtroopers - amazing shooters who seem to hit everything except the target. I understand that there are other people out there with far less fortunate circumstances and I'm aware that I haven't walked in their shoes.


Like most of you, I'm still learning about autism politics and I make mistakes too. I'm sure I'll be picked up on these in the comments. It's not my intention to sensationalise things or to "close the book on the subject" - simply to tell you what I've learned so far.  I'm sure that it will be as much a learning experience for me as it will be for my readers.

I had intended to write neutrally about this topic but unfortunately, I can't find a middle ground.

Finally, one more apology.  I'm sorry for the length of this piece.  Normally I'd split something like this across more than one post but in this case, I feel it needs to be kept together.


Thinking about things in different terms
I often feel that thinking about autism using different terms is useful. One of the easiest analogies to understand is racism - so I guess that this is the first group that I'm going to insult (sorry).

I'm going to start by using white people as my "autistic group" because it's less commonly done that way and maybe I'll insult less people - I don't know.

If we pretend that it's a racist thing and we say that we want to "cure" white people to make everybody "black" since the world's population is predominantly non-white. Does anyone see a problem with that?  I certainly do - it sounds very extremist and it's clearly wrong.

This is the same as suggesting that people with autism should be cured. I'm aware that some of my readers might not agree. That's okay. It's a free world and you can think what you like but please read on and give me a chance to explain.

Changing People
Staying with our analogy, there are of course, things we might want to change but they fall into several categories and not all of them are fair.  I'll be discussing three types of change in this post.

Unnecessary Change
Perhaps we want our white people to have better singing voices because it seems that black people are generally much better singers than whites. Is it fair to want this? Is it necessary? In this case, I don't think that it is. It's a want rather than a need and it's similar to the parent who wants their non-verbal autistic child to become an orator or to "follow in their footsteps".

It's a problem which occurs when people can't let go of their preconceived ideas of what their children are and it's bordering on "lack of acceptance".

There is little difference between a parent not accepting a child who simply can't do something and a parent who won't accept their child's gender. There are countries where children of the "wrong" gender are murdered or given away. We see those actions as wrong so why can't we see the lack of acceptance for what it is?

Critical Needs Change
The second reason that you might want to change people is to take care of critical needs.

Continuing our racial example, suppose we live in a hot country with little shelter and we wish that our fair-skinned child wasn't so susceptible to sunburn. Note; we don't wish for her to be black, just safer.

We accept that we can't change the child and we do our best to counter the problem with suntan lotion, a hat and dark glasses.

This analogy is a little like the use of therapy and supports to assist in developing a vital skill such as toilet training. We want our child to toilet on their own because it's safer and more hygienic.

We're not wanting them to be "normal", just more capable.  I think that this is acceptable because you're accepting the child and their limitations and your intervention is directed towards safety and self-sufficiency, not "normalisation".


How words like "hate" and "cure" don't help anyone.
There are parents out there who say that they hate "autism". I can see how it presents a large target but actually, it's not "autism" itself that you hate. It's the inconvenience, embarrasment, suffering and just plain hard work associated with some parts of the autistic condition that you hate.

It would be better if we could be more specific about the things we hate. Clearly we hate having to clean up after a toileting accident for example. Make it clear though, it's about US, the parents, not the children.

This is a good step forward but making a "hate list" of specific things will only carry you so far and really it's better to let go of the hate and "accept the things you cannot change". If you don't do this, things will simply build up until you explode or are overcome by depression.

The list is still an important part though because it tells you what you should work on first. The next step is to see what you can do to modify the behaviour.

You see, if you simply "hate autism" then your only option is to fund a possible cure or worse, to try dangerous therapies (brain surgery and chelation) in an attempt to eradicate what you see as the problem.

Personally, I don't believe that there will be a cure in my lifetime. In fact, short of some kind of thoroughly evil sterilisation process, I don't think there will be a "cure" at all.

Anyway, just to be completely clear; even if a working cure was developed today, it would probably be a decade before it passed enough clinical trials to be approved for general use.

So instead of throwing money into a lost cause, let's look at what our money can achieve today. Better support, better facilities and happy memories. Because we have a "hate list" we can turn it into a wish list. Let's look at what we don't like and see if we can make some progress.

For example, you might find that lack of communication is a barrier.  You might spend money on speech therapy, signing assistance, social story charts or an iPad. These are things that you can do for your children today. They will provide at least some benefit and probably happiness too.

Societal Change
Back to our reasons for changing people; the third case might be easier for some people to understand if the black and white roles are reversed so if need be, swap them in your head.

This time, we're not talking about "changing our children", we're talking about changing other people. It's something that the autism advocates are constantly talking about and it's a very worthwhile cause.

Let's imagine that social conditions are far better for people of one colour than another. That perhaps one race has access to better schools or that there are areas that the other race is not permitted to go. Maybe there's also financial inequality.

We've seen all this before in our history and we know that it was wrong. I think that in a lot of ways it still continues today. We have a lot of inequality of circumstance. People don't choose to be born one colour or another, they don't choose the religion that they grow up in and they don't choose their initial economic circumstances.  It's therefore unfair to judge them or to oppress them based on the circumstances of their birth. The same applies to people on the spectrum and indeed all people who were born with conditions which differentiate them from "normality".

Much of the discomfort of people with autism comes from society. As a society, we point out different people and we exclude people on the basis of appearance or abilty.

Consider the sensory child who hops into a crowded elevator filled with loud, smelly, squishy people and with piped music and movement for added discomfort. As parents, we take some of these things for granted and sometimes don't think about how they could affect our children. We're only human and we make mistakes.

What compounds these problems however is society. The people in the elevator who view your child's meltdown with distaste and mutter things about their behaviour; who tell you or others loudly that the child needs a good hard smack or that, heaven forbid, reach down and give your child a sharp poke with a finger, a stern gaze and a harsh voice.

Even worse, when you explain that your child has autism, these people either deny the diagnosis or back away as if there's a chance it could be catching.

Our schools and workplaces are full of bullies who not only won't understand but who will act against or exclude your child. In fact, often children on the spectrum are segregated, like other persecuted groups in our history. How is this fair?

Our children know that this is happening and it takes a great emotional toll on them. In the right environment and with the right supports, a person with autism can thrive. Crush their spirits however and it may take a lifetime to recover.

The question is, should we speak out or hold our tongues?  Being a non-confrontational person, I would love to simply crawl away and let society think what it will -- but that isn't the right thing.  Throughout history, the only way that persecuted groups such as women voters, black people and gay rights activitists have gained their their rights has been to fight for them. To stand up and be heard.

That's what we as in the autism community need to do to effect societal change.

There's no cure now and there is unlikely to be one in your child's formative years.  It's fine to fight but lets be clear what we're fighting.  It's not autism.  We're fighting for acceptance, for understanding, for support and most of all for a change in our circumstances.  

19 comments:

RaasAlHayya said...

This goes right along with my thoughts. Thanks!

Anonymous said...

I guess I am somebody who did grieve after my first child's diagnosis, not for me, but for her, the difficulties she has to face that will be with her her whole life. I love her exactly how she is, I just hope she can find a happiness within herself. There is no doubt her life would have been easier without aspergers, less lonely perhaps. I think it's crushing when aspergers only became evident when she turned 4, the readjustment of who we thought she was in terms of social skills, to seeing these difficulties unfolding. It's a tough thing for us to deal with, what must it be like for her...I wonder if she will like or hate aspergers...that's what's important for me and only time will tell...l

Nicomachus said...

I loathe the idea of searching for a cure, not solely because it is somewhat offensive, but because it's like trying to find a cure for being gay. There's no way a person could take a pill and not be gay anymore, no medicine that will make men attractive and women unattractive, or vice versa. (There are medical ways to make all people unattractive, but that isn't making the person straight.) Homosexuality, like heterosexuality, is in your brain, in the way your body works and reacts. There's no medicine for it.

Same with autism. It's not a disease with germs that can be fault. It's not a condition that spreads and worsens or gets better. People simply learn to do things better or better adjust. Autism doesn't go away or clear up. It's always there, and it will always be there, because autism is how the brain works. Trying to find a cure for autism is pointless because it cannot be cured. Similar to how fears cannot be cured; medicines can help fight the symptoms, but to overcome a fear, you need some sort of therapy (not necessarily the kind with a couch and a therapist, mind you), as well as hard work. People with autism can learn to do all sorts of things and can have more comfortable lives, but it doesn't happen, and will never happen, through a pill or surgery or anything like that. It only comes about through hard work and perseverance. There is no way to make an autistic person suddenly not have autism, and I'm sure there never will be. That's why searching for a cure is a waste of time. It's much better to work towards coming up with therapies and techniques to help autistic people.

Anonymous said...

Lets try not to align autism with race or sexual preference, i think thats comparing apples with oranges so to speak. Autism is a disability. Lets say then, downs syndrome is also a disability. Do people want a cure for down syndrome? Just asking.....

Trey Smith said...

Rather than repeat what Nicomachus wrote -- I was going to make the same point re homosexuality -- I'll just give both Nicomachus and Gavin a big thumbs up!!

Khadija said...

Brilliant !

I don't hate Autism, I don't hate people who want to cure it but I do hate the fact that some people think a "cure" is even necessary.
I was just thinking about it the other day, if I got cured of my Autism would I still be me? As what many think of as personality traits are the very things that get picked up on the diagnostic criteria.
I hate the thought of others wanting to fix me because I don't think I'm broken.
I agree we need to teach people to understand and accept us for what we are not for what they want us to be.
excellent post !

Anonymous said...

Thank you so much for this...you've put into words what I couldn't. My son is AMAZING! His Aspergers is a gift and I love seeing the world through his eyes. I wouldn't want to cure that at all, just like I wouldn't want to cure someone from being an athlete or a librarian.

But, agreed, I can only speak from my own experience. I have friends whose lives are turned upside down and inside out by autism, and I might feel differently if that was our case.

Anonymous said...

I self-diagnosed as an Aspie well into adult-hood, having grown up ascribing my lack of eye contact, fear of loud noises, and over-fixation on electronics as simple "nerd-ism". Through the lens of this article, do we need a cure for nerds? Maybe we need a cure for social popularism. Like a psychotropic mind-expanding drug that helps people realize that genetically engineered corn has less nutrition, and pure-bred dogs have a high incidence of hip dysplasia. Society doesn't think you need a cure when it needs their computer fixed.

vhudi said...

I so understand this blog and it just reminds me of a prayer wrote to God, I stopped praying to God to heal or cure my child, but I started praying for myself that I accept him and learn to love him as he is.

Me said...

I don't think we can compare race or sexuality to disability. While all may be innate to the persons identity and lived experience, autism does manifest as difficulties that go beyond social impediments. There are neurological challenges that go beyond just difference and cause suffering in themselves. Neither race or sexuality do that.

Kerry said...

Very well written piece which definitely hits the nail on the head (excuse the idiom).

I especially get the bit about a cure. It really winds me up when people try selling books about curing autism when the reality is that either the cured person either never had an asd in the first place or the strategies being used are successfully keeping certain behaviours under control on a temporary basis.

Desiree said...

I absolutly love and respect what you are saying about this spectrum. My son is 7 years old and he was diagnosed last year around summer time and I did not get the paper work stating everything till august. I am looking foward to reading everything that you have to say. I need all the advise I can get. I was 18 when I had my son and had no clue what I was seeing in him. Now after 7 long years the light bulb abouve my head is turned on and listening (very sad on my end) I also know that I was in denile and listened to those who knew NOTHING about what was being seen in my son. All anyone did was label my son as bad behavior, spoild rotten child, ODD, and very disruptive. If you (at 3 years old) couldnt understand your mommy and your mommy not understand you... wouldnt you be upset, and angry, and hateful, and resentful? Again I am looking foward to reading everything this blog has to say, I can already tell it will be alot of help! Thank you for your time DLR

Penny said...

I don't know that ASD is something that is curable like a sickness. I don't feel like I could be cured of it anymore than I could be cured of being tall. And if there was a cure I wouldn't be me, and I have become accustomed to me.

Krista said...

Thank you for your bold statements. I agree wholeheartedly! We chose to see all 3 of our children as gifts from God with their own individual characteristics. Our "Aspie" as one pointed out below is no different than our 4.0 pre ap self starter. He has his own set of "quirks" and our goal is to help him learn to be the best adult he can be. No cure needed! We just all need to stop worrying about labels and just be the best humans we can be!

Tim said...

Unfortunately, differences are still not tolerated in society - and the medical community is guilty of this also. I'm left-handed, and at primary school I was forced to write right-handed - that was the only way. In medieval times LH people were associated with the devil, so I'm grateful things have moved on a bit since then - but society is still quick to label differences as freakish. Whilst I admit it would be good if I could be 'cured' of Aspergers, and be able to function 'normally' in society, I've grown up feeling different and would rather have pride in being who I am than sell my soul and be reprogrammed - which I know wouldnt work anyway. Instead of hating myself for being abnormal, I'm learning to feel good about myself for being different - aspie-pride!

NCFriend said...

sorry.. agree to disagree with this one.... its so easy for us parents of higher functioning aspies, to say.. my son IS my son, he doesn't need curing. But for those kids who can not speak, rock, self-stim, cause harm to self and others, suffer from pica, and other physiological symptoms of autism, those parents grieve for the child they do not have. Who would not cure THAT child so he or she would one day be able to look in their mother's and father's eyes and say "I love you."?? or even settle for a snuggle without being pushed away.

PSK said...

Hi Gavin,
Thank you for your comments, and I completely understand your analogies of the "black" "white" people. My son has Aspergers and we have dealt with similar issues all his life - used to break my heart, but now we have understood that we cannot educate the masses. We just navigate our way around a little better.

Anonymous said...

"...Continuing our racial example, suppose we live in a hot country with little shelter and we wish that our fair-skinned child wasn't so susceptible to sunburn. Note; we don't wish for her to be black, just safer.

"We accept that we can't change the child and we do our best to counter the problem with suntan lotion, a hat and dark glasses..."

THIS IS A FANTASTIC EXAMPLE. Seriously, it's happening in Australia and New Zealand right now!

"...Our schools and workplaces are full of bullies who not only won't understand but who will act against or exclude your child. In fact, often children on the spectrum are segregated, like other persecuted groups in our history..."

*And* I recently saw an adult on the spectrum (Cube Angel in the comment thread at http://autismgadfly.blogspot.com/2012/02/autism-in-workplace-neemans-at-it-again.html) demand that society accomodate urges to yell at one's coworkers, grope one's coworkers, ask one's coworkers instrusive questions, etc...like other persecut*ing* groups in our history.

What we really need to do is crack down on bulling behavior in schools and workplaces, no matter if the bully's excuse is "but I'm white" or "but I'm male" or "but I'm neurotypical" or "but I'm Aspie."

"...Maybe we need a cure for social popularism..."

By definition, that would be a cure for wanting to have friends and liking the friends one has.

"...Society doesn't think you need a cure when it needs their computer fixed..."

Except the parts of society that don't like being harassed in the name of Asperger's in the computer-fixing classes.

Anonymous said...

"...Continuing our racial example, suppose we live in a hot country with little shelter and we wish that our fair-skinned child wasn't so susceptible to sunburn. Note; we don't wish for her to be black, just safer.

"We accept that we can't change the child and we do our best to counter the problem with suntan lotion, a hat and dark glasses..."

THIS IS A FANTASTIC EXAMPLE. Seriously, it's happening in Australia and New Zealand right now!

"...Our schools and workplaces are full of bullies who not only won't understand but who will act against or exclude your child. In fact, often children on the spectrum are segregated, like other persecuted groups in our history..."

*And* I recently saw an adult on the spectrum (Cube Angel in the comment thread at http://autismgadfly.blogspot.com/2012/02/autism-in-workplace-neemans-at-it-again.html) demand that society accomodate urges to yell at one's coworkers, grope one's coworkers, ask one's coworkers instrusive questions, etc...like other persecut*ing* groups in our history.

What we really need to do is crack down on bulling behavior in schools and workplaces, no matter if the bully's excuse is "but I'm white" or "but I'm male" or "but I'm neurotypical" or "but I'm Aspie."

"...Maybe we need a cure for social popularism..."

By definition, that would be a cure for wanting to have friends and liking the friends one has.

"...Society doesn't think you need a cure when it needs their computer fixed..."

Except the parts of society that don't like being harassed in the name of Asperger's in the computer-fixing classes.