Saturday, June 12, 2010

'I don't suffer!' - Guest blog by Elena Newley

 Guest blog by Elena Newley: Originally posted on Planet Mouret 
I don't suffer!

OK, haven't updated for ages now as I've been busy with various projects but today I'm having a little bit of a grump and so thought I'd share my grumpiness with y'all!

I don't 'suffer' from autism - ok??  I HAVE autism.   Argh!  It's not an illness, it's a condition.   I'm one of those people who believes I am blessed with autism.  I honestly feel it's a great benefit to me and I wouldn't want to be any other way.

Not long ago I happened to be at a hospital appointment and the doctor came into the room and his first words were "did you know they can cure autism nowadays?"   Quite apart from being somewhat stunned by this astonishing revelation, I was also thinking to myself "this appointment isn't going to go well!"  I patiently explained that autism is a neurological condition and it cannot be 'cured' to which he replied "oh yes it can, with cognitive therapy if they catch it early enough, say before a child was 5 years old".

Hmm, then I'm thinking to myself "do I really have long enough to talk him through this?" before I plunged into my reply where I pointed out (a) that you cannot properly DIAGNOSE autism before a child is five years old as their cognitive processes haven't developed sufficiently until that point to conduct the actual testing (b) although cognitive therapy may indeed assist an autistic individual with coping with various aspects of their day to day life, it certainly cannot 'cure' autism.    He then hmmed and hahed, remained unconvinced, I gave up trying to explain and we got on with my appointment!

I guess the point here is twofold :

Firstly, his ignorance was alarming.

But secondly, and more importantly from my point of view, I DON'T WANT TO BE CURED!!  I'm fine as a I am! I am happy being autistic and I don't want anyone to 'mend' me, 'change' me, or 'cure' me.

So, lest anyone is left in any doubt - I am NOT suffering!  I am autistic and I am happy this way.  Yes, it's sometimes hard but show me someone, anyone who doesn't find some aspects of their life 'hard' - we all do in our own ways.  Yes, there are times when I wish the Neuro-typical world would get over itself and start realizing that it is THEY who make our lives so difficult by their constant refusal to adapt themselves to OUR needs.  The real joke is, it is AUTISTIC people who are meant to be inflexible and unable to adapt...

Friends, in my experience, it is actually the neuro-typical world which seems unable to adapt.  NT's just automatically assume we all want to fit into their world in much the same way as many people assume the ONLY decent method of communication is verbalization, if you don't talk then (obviously) you can't communicate - ARGHH!  Wrong!

So my dear blog-readers, yes, I am having a little bit of a grump, did I mention that?  :)


Wordsmith_for_Hire said...

I so agree. I have epilepsy and I do not suffer from it. It infuriates me that people describe me as "suffering". Granted, I'm fortunate that my seizures are fairly infrequent but the epilepsy has a massive impact on my life in many other ways on a day to day basis. And that's a major nuisance, for sure, but I still don't suffer. Well, only from other people's ignorance!

Planet Mouret said...

LOL re : The 'only from other people's ignorance comment' - I LIKE that, I think I may have to steal it! ;)

Michael said...

My son was diagnosed with PPD-NOS at about 3 years old, so diagnosis is getting better for really young children.

We once took him to a new neurologist for an evaluation, and the first words out of his mouth were "He doesn't look sick". Needless to say, the rest of the appointment was a waste of time.

Anonymous said...

Well said!

The Daily Mail keep saying Down's sufferers. Very annoying. It's like saying someone suffers from having blond hair or being tall. It's just how they are. They're not ill!

The negative attitudes around disability concern me greatly.

I got accused of being racist recently for saying that disablist language was as bad as racist language.

At first I was baffled. But then I realised that these people's prejudices towards the disabled was informing their view of my argument.

They thought I was making a *negative* association (comparing abuse of a black person to abuse of a disabled person is insulting to black people because disabled people are rubbish) becase they have a *negative* attitude to disability.

I had to explain that disability is just one of those things and unlike them I don't see it as a 'problem', hence no negative association.

And my point was, abusing people for their disability is just as bad as abusing someone for the colour of their skin. It's disablISM and racISM I was arguing against.

People worry me sometimes...

Planet Mouret said...

Hi Michael, yes, the diagnostic tools are becoming more sophisticated but children haven't really changed the ages of their cognitive development! I know quite a few professionals who will make predictions before the age of 5 but any actual diagnosis prior to that age is very suspect from a professional perspective as the cognitive and higher executive functioning areas of the brain simply aren't developed until around the ages of 4/5. However, the tools for diagnosing are certainly improving which is a great thing indeed.

To anonymous : I get exactly what you were saying and I also know the types of responses you were met with, I've 'suffered' them myself. The Daily Wail is a really bad culprit of this type of language mis/ab-use. Along the same lines they often say a celebrity with a broken leg is "very brave" when they are photographed out shopping. Goodness knows how they'd describe someone with autism or Down's but you can bet there'd be a 'brave' in there somewhere! :)

Arienette said...

Hmm, I may be opening myself up for abuse here, and I hope you take this in the spirit in which it is meant (as discussion rather than argument) but your post contradicts itself. By definition, you do suffer. You suffer from the misconceptions of NT people and problems you have moving within the NT world.

I suffer. I would give anything to be 'cured'. I don't even have a name for what's wrong with me so trust me, I know what it's like to come up against people who don't understand, or don't want to understand.

Also, having dealt with more than a couple of ASD 'sufferers' (what word would you prefer? Afflicted?) I can say that those around them suffer from their ASD much more than the suferers do. Perhaps thats why people care so much about 'curing' autism. The parents of a boy I know very well with autism are so incredibly bound by his condition, and he's actually very high functioning. But their family hs repeatedly 'suffered' minor and major inconvenience and problems directly stemming from his autism.
So maybe you don't suffer from your autism. But someone does. Much like my husband suffers, GREATLY, because of my problems. I wish I could be cured, if only for him, and for the suffering my daughter has and will encounter because of having a mother who isn't well.

I'm all for fighting people who are insensitive and jerky and ignorant(as the doctor was), I've done enough of it myself. But to just dismiss out of hand the idea of autistic people adapting to a NT world is narrow-minded and harmful to the people who love those with ASD's most. You say that YOU should not have to adapt to NT needs or expectations, but you EXPECT and get angry when the NT world 'refuses' to adapt to yours? What? That's so hyporitical. And besides that, I know many many people who work very hard to help people with ASD and adapt their NT environment to one which is easier for those with ASD to navigate. To dismiss 'NT's' out of hand so generally is really quite insulting. I don't judge everyone with ASD by the most irritating and hard-to-manage person with ASD I know, so why do you make sweeping statements about NT people, as though we're all the same?

Katja said...

Arienette - instead of "sufferers," or "afflicted," I would suggest "people."

Responding to your 1st paragraph - by this token, I would also suggest that people could be said to "suffer" from their sexual orientation, ethnicity, gender, etc..

"I can say that those around them suffer from their ASD much more than the suferers do"


Also, I don't offhand see ground for your assumption that Elena feels that she should never have to adapt to NT needs or expectations. Maybe you could point it out to me? My wild assumption is that she does so, on a daily basis, and is simply asking for some genuine reciprocity in this regard.

Lankylonglegs said...

Good for you!!!

Why the hell should you have to adapt? What is wrong with just being who you are?
Personally I only know one person who has Aspergers (I've been led to believe it is a form of Autism but do forgive me if I'm wrong) and he has a fantastic life that he lives to the fullest!
Never let anyone tell you who you should be, or let them try to change you unless it is something YOU also want.
Life is for living - one person's dream world is not necessarily anothers.

Katja said...

I think there may be some confusion regarding "needs" and "preferences." e.g. NT's may strongly prefer that I make eye contact with them while speaking; however, doing so would make it difficult if not impossible for me to communicate intelligibly, as I (literally) can't effectively process more than one stream of information simultaneously. I work [hard] to adapt to others' needs (and preferences) as is practicable for me, which I regard as common courtesy.

I don't believe it unreasonable to ask others to be reciprocally courteous (accommodating) in return. I find it interesting that some of the simplest and most useful accommodations (e.g. regarding simple requests for certain kinds of information, or that information to be provided in a way that's comprehensible, and makes it possible for me to function), are the ones that others are often most averse to providing.. I think the requests seem so unusual, given my perceived general intelligence, that it's typically figured I must be pulling their leg :).

Disability Books said...

Did the doctor not notice that you were considerably older than five? What kind of a reaction did he honestly think he'd get?! "Oh boy, I could be cured if I had a time machine!"

Scottish Libertarian said...

I've had ME for nearly 20 years, I'd LOVE a cure, or even a treatment that will reduce the symptoms. I don't see disability as part of my identity, instead I try to live as full and positive a life as possible in spite of it.