Thursday, January 15, 2009

Why Can't We Face the Truth? Autism Reality from the UK

I phoned with New Year good wishes. Helen answered, in tears. Her head hurt, she said; Tom had ripped out a handful of her hair by the roots. Bit her, too. But I couldn't hear what she was saying for the insistent shrieking in the background.

Carole Sawler, describing a phone call to a mother of an autistic child

In Why can't we face the truth? Having an autistic child wrecks your life ... on Mailonline, Carole Sawler provides some reality about autism disorders. Not the fluffy, head in the sand, Joy of Autism stuff that celebrates autistic disorders and would have you believe that it is a good thing that your child is autistic, but the gritty, harsh realities captured in the above quote and some others too like the impacts on parents careers, travel plans ... or just the ability to relax.

I read this article after a rough night with Conor. I love Conor deeply. He is my buddy, forever. But last night was not one filled with sleep and a long day lies ahead. I refuse to pretend, as the Joy of Autism crowd would have it, that all is sweetness and light with autism disorders. At least not for all autistic persons, particularly the more severely affected, those whom the Neurodiversity movement pretends do not exist. And not for all families with autistic members.

Carole Sawler asks "Why can't we face the truth?". A very good question.




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13 comments:

Marius Filip said...

Autism is not a joy for the parents of children with autism in the milder side of the spectrum, either.

My son goes through a rough time these days, too, in spite of being so affectionate with his brothers for the past two months or so. And his autism is truly mild, in fact he's almost like a normal kid with a speech delay.

While there are lots of autistic people out there who say they don't want a cure (most of them in the high side of the spectrum, I guess), I wonder how many CURED autistics (i.e. people recovered through therapies like ABA) would like to go BACK to the age of screaming, self-injury, extensive repetitions and other such "joys".

Anonymous said...

I hope your day is well. Justin has the occasional 'wake night' and it is not easy!
I to wish the sobering realities of autism will get some attention and help.

Dawn

Anonymous said...

Why do you continue to misrepresent neurodiversity? It has nothing to do with what you wrote about recognizing that all is not sweet? Is this a personal war with you? What is it accomplishing? No one believes autism is all sweet. Stop reasoning like George Bush (either your for us or against us). Life isn't that neatly boxed. Your emotions are getting in the way of reasoning.

Anonymous said...

Anonymous,

I wish you would identify yourself, remarks such as this is cowardly with no identification. I have known Harold for many years and advocated for services here in NB with him, shoulder to shoulder. He knows of what he speaks.

Dawn

jypsy said...

Dawn,
My name is janet norman-bain and I live on Prince Edward Island. I agree with "Anonymous" - no one I know, including the owner of the Joy of Autism blog believes autism is "all is sweetness and light". Nor does the "Neurodiversity movement" pretend that "severely affected" autistics don't exist.

If you honestly believe I'm not telling you the truth, please email me (you'll find contact info on linked to my name) so we can discuss this and I can show you the very clear, public, evidence to the contrary.

Autism Reality NB said...

jypsy

I am happy to have you visit my blog site. I have read the Neurodiversity literature which tries to suppress discussion about functioning levels, speaking positively about autism etc. Even mentioning that some autistic persons are more severely affected than others is criticized.

I have also read the Joy of Autism blog. The title speaks for itself.And of course there are the relentless "posautive" promotions of autism.

lurker said...

Anon, someone should tell you and your neurodiversity associates, a few things about reasoning, and about emotions getting in the way of them.

Marius Filip said...

Anonymous No. 2: a phrase like "Don't you see how great the autism of your son is?" is enough to me. OBS: it was told to me by an autistic person on YouTube.

If the Neurodiversity movement would limit itself to eliminate prejudices and discrimination against the autists it would have my full support.

But because the basis of its attitude consists in the thesis that autism is a normal neurological variation and autists are, otherwise, normal people, it falls into the pit of political falsehood.

It is a great cynicism that the deviant behaviors of autism get depicted as normality and, in fact, is the outside world that "misunderstands" such bizarre behaviors. Moreover, the immediate implication is that the ones who "misunderstand" the autistic children are their neurotypical parents, who care for them most.

It is a great cynicism to cite Albert Einstein to support the so-called intellectual values of autism when 99,9999% of people will NOT achieve nothing near the accomplishments of Einstein, and most autistics accomplish, in fact, less than the average person.

It is a great cynicism to say, like Amanda Baggs says, "I don't understand the fuss with being slow" when she is helped and sustained by a society that makes a lot of fuss about "being slow".

I do not advocate that all autistics should be left alone, should be required not to be "slow" or should work for their bread.

But I believe that the ones who can work or can not to be "slow", should do it. And all of them should admit what autism really is: a disability of the brain which has nothing to do with the dignity nor the rights of the person hit by it - or it shoudln't have to do.

There is a great difference between fighting for rights and dignity of a disadvantaged person or group and advocating for things that go against sheer common sense.

Anonymous said...

Jypsy, I believe you have been told a few things from others. Enough said.

Dawn Bowie

navywifeandmom said...

I have also seen parents blamed by neurodiversity for their children being lower functioning! NO KIDDING! Like if the child is biting himself to no end and it is causing him great distress, it is because the parents do not "just accept the child" or they must be abusing the child! No kidding! I have never had to deal with my daughter self-injuring, but that is such a huge slap in the face to a parent who DOES have to deal with that. That kind of thing is very real in many families dealing with autism day in and day out and sticking your hands over your ears or vomiting out warm, fuzzy platitudes about acceptance will not make it go away.

I no longer take these people seriously when they say my daughter will hate me for treating her symptoms and praying for a cure for her autism. She was unable to sleep through the night for THREE YEARS STRAIGHT until we did some of the so-called "quack treatments" and treated her for yeast. I don't think she hates waking up in the morning happy and well-rested versus waking up tired and crying because she did not really sleep. Nor do I think she hates the ABA that she gets at school that the ND crowd finds so repugnant. She loves school.

If these people are happy with their own lives and have found peace with their conditions then fine. But they have no business pretending to speak for my daughter who is unable to speak for herself.

Nice blog. I have been looking for some autism dads to add to my roll. I might go ahead and add you sometime soon.

Autism Reality NB said...

navywifeandmom

"But they have no business pretending to speak for my daughter who is unable to speak for herself."

I agree.

farmwifetwo said...

I have no idea what I believe anymore. I'm not in the vaccine camp, not in the cure camp, not in the neurodiverse camp.

All I want is for my kids to live independantly (or as much so as possible) and to enjoy life. Which means they need to understand language, communicate quickly and easily and be able to read and write.

I don't miss the meltdowns, the headslamming the destruction of property by my eldest.

I don't miss the need to read minds with the younger... although I still do at times atleast the non-verbal cues by him are enough for me to figure out what's the problem.

I saw Dr Temple Grandin speak a couple of years ago. She has autism and she thinks those with autism need to learn to follow societies rules as well. She views herself as a person - with quirks - but a person who's part of society as a whole. Not "special".

It's had it's highs and lows... but it gets better every day. Would be a lot simpler not to be living this life... and I admit it.

S.

Anonymous said...

I am NOT part of the ND crowd. All the same, the slate piece misrepresented the neurodiversity movement.