Thursday, June 17, 2010

Autism Awareness: Blaming Other Parents Won't Change Autism Realities

Kristina Chew is a mother of an autistic son and a well known and influential autism blogger whose views have been sought by prominent media institutions in the United States.  She has visited this site on occasion and left some kind words. Her writings about her own son are those of a mother who loves her son deeply. The pictures of her autistic son enjoying life with his parents are particularly moving.  When I see her son's pictures and read Ms Chew's comments about her Charlie it seems that in many ways he is very much like my son Conor.  

I have always disagreed though with Kristina Chew's  tendency to downplay the harsher realities of autism disorders. I am particularly saddened to see her recent writings about two incidents of parents taking the lives of their autistic children in which her point seems to be that we should not talk about the negative realities of autism disorders, we should emphasize the positive aspects of what are neurological disorders in order to prevent other parents from harming their autistic children. Ms Chew says that we should pretend that autism is a good thing to be embraced. We should ignore the fact that many with autistic disorder will live narrow restricted lives, many in residential care facilities, some in psychiatric hospitals.  We should ignore the basic fact that, as parents, we sought medical attention for our child before we knew he was autistic, because we knew something was seriously wrong with him. Before his diagnosis twelve years ago I did not know what autism was. Twelve years later I have a better understanding and I have no intention of embracing it.

I love my son and look forward to the time I spend with him.  I post many pictures on this blog site and on my Facebook page of Conor; the overwhelming majority of which are very positive.   But I do not lose sight of the realities of his autistic disorder.  I have done my humble best to improve my son's life and I have, along with other autism parents who refuse to wear rose colored glasses,  fought hard to help other autistic children obtain evidence based early intervention and education opportunities. I have also lobbied actively, admittedly without any success to date, for improvements to our province's residential care system for autistic adults. On this site I push hard for autism research which will be more oriented toward finding out what causes autism, finding cures and treatments.  I see no reason why my son should live forever with the deficits imposed by his neurological disorder if ways to help overcome those deficits can be found.

The fact is some people are overwhelmed by life and break down.  Some do horrible things and in some cases those persons do those things to their autistic children.  Some of the parents who commit these acts may have their own mental health issues independent of their child's autism. To suggest that other parents should stop talking about autism realities in order to prevent such tragedies is not based on evidence, logic or common sense.

The way to prevent such tragedies, to the extent they can be prevented,  is to  find help for the parents who need their own medical or psychiatric assistance, to speak honestly about the realities of autism disorders, to stop the almost exclusive focus on the genetic research obsession (it's gotta be genetic, Teresa Binstock, 1999) which has yielded nothing of value to help autistic children. The way to prevent such tragedies  is to conduct research to find the environmental triggers of autism, to find how autism works biologically, to find cures and treatments for autism disorders, to provide more and better early intervention, schooling and adult care.

The way to prevent such tragedies is to commit our selves as people, as parents, to helping our children overcome their neurological disorders.

I love my son and that is exactly why I will never put on the rose colored glasses and embrace his autistic disorder.


Astrid said...

With all due respect, but I fail to understand how parenting an autistic child, even a profoundly autistic child, should be an excuse for murder. Of course, parents may have mental health issues that are exacerbated by the stress of parenting, and, if a parent commites a crime against their child whilst in a mental illness episode, that should be taken into account. However, the stres of having a "defective" child is no excuse. Of course we should acknowledge the reality of what it's like to parent a severely disabled child, and to look for resources to make this easier, but I don't want to see this in the context of a tragic murder of a disabled child by their own parent. That may be parent-blaming, so be it. If the child weren't disabled, the parent would be very harshly blamed for killing them, no matter how stressed they were.

Carl said...

i tend to agree

my focus myself is on both aspects

he is what he is and we love him and much of the time he is delightful and autism is nothing to be scared of

that said autism is not easy to deal with and it requires patience and care and the ability to not lose your temper in the harshest of times

the truth is the negative side of autism is a reality and it must be addressed, the number of parents who are inclined to harm their children due to disabilities are rare tho they do exist and hiding the truth will not change how they are likely to behave

revel in the good, be proud of it and be publicly proud of it but dont hide the reality of what you have to deal with on a daily basis

Anonymous said...

K. Chew lives in her own little unrealistic world and seems to constantly critcize those who take very seriously how difficult autism can be on a family. I applaud those parents who implement biomed and intensive ABA while also being well aware that autism is not just some wonderful quirky personality trait. It is disturbing that she takes this stance but I have a feeling that what she writes and how she truly feels deep down are two different things. I think she has created some image of herself thinking people actually are interested. Most parents are not.

Claire said...

I searched for over a year and a half on the internet to find parents' whose experiences were similar to mine. I was constantly frustrated by the "disability is natural and wonderful" crowd. I thought maybe there was something wrong with me. Once I finally connected with "my own kind", it was a relief of magnitude proportions. To hear their stories, both good and bad, was the best thing ever and I have become a stronger and a better parent as a result.

John Best said...

Isn't Chew's PhD in Greek Mythology? And, doesn't she teach the same? So, her whole life based on avoiding reality.

Wade Rankin said...

Harold's point is not to excuse murder. But what leads to murder is a sense of hopelessness. I have hope. And that hope makes the killing of one's child an inconceivable act to me. While I can't bring myself to condemn a person whose actions are such a mystery as to be beyond comprehension, neither can I offer the difficulty in raising an autistic child as an excuse.

Despite what is too often said about me -- and others like me -- is that I need to "accept" my son. Hope can coexist with acceptance, but is not dependent upon it.

I DO accept my son, regardless of his ASD (not because of it). And that is true acceptance. What I do not accept is the inevitability of his disability.

Anonymous said...

Yes, I have two other children besides my Autistic child and though this child has taught me the most...I think he should be teaching the Community the most. I went to the park last night to meet a mother of two Autistic kids. I never knew but maybe 1 (undiagnosed) child. To tell me there is no Environmental Trigger is a bunch of nonsense and I don't think any child is "disposable". I do feel it's either vaccines (the most direct violation of body,blood with neurotoxins) plus the more shots you get, the higher the rates of Autism. Doesn't take a rocket scientist (developed vs. underdeveloped). Even Identical twins without Autism. Pesticides, mercury, aluminum, all poison to little developing minds. We may be surprised to know there is mercury in our long lasting lightbulbs. Toxins are growing and we need to stop buying. Where do they bury them and what's in our water?

Stranded said...

I don't see anywhere in this post that says that parental stress due to child disability or severity of autism is an excuse for criminal acts (murder or any thing that infringes on the rights of a human being like physical or other abuse).

I am also get angry when anybody kills anyone.
It seems particularly cold blooded and inhumane when someone more powerful kills someone more helpless and innocent and so on.

But people often confuse acceptance with denial and surrender. To us it means the opposite - we accept, we love, we fight for changing things for the better. I think to do that you HAVE to take off the rosy shades and call things as they are.

Anonymous said...

This has to be the most accurate comment (off another blog) I have ever seen about Professor Chew.
When her son is 200lbs. and banging his head, maybe then she will realize that autism needs to be taken seriously and not as some lovely way of being.

"Those who can, do. Those who can't, teach psychobabble postmodern crap at second rate schools. She will not be remembered later, not even unkindly."

Posted by: BunnaW | February 01, 2009 at 12:38 AM

farmwifetwo said...

Having lived with the holes in the wall... we've managed to overcome that one through a lot of hard work and the fact he's the "will be normal" one.

We're lucky the autistic one is so laid back. But I'm tired of the unending toiletting battles at 8.5yrs old...

I love my autistic son.... but I'm with you. There's nothing wonderful nor glorious about autism. Yes, he's doing amazing... but I have no asperations that even if he learned to sort out that information we have crammed into his head the last 4 years he will ever be independant. Read "autism and the myth of the person alone" Biklen.

This is not "right". This is not his "destiny". Should they ever find a cure or a magic pill... I'll be pushing you off your first spot in line Harold :)

As for those that "snap"... I believe the saying goes "do not judge someone until you walk in their shoes"... What they did was illegal and under the law they must be held accountable.... Beyond that... I refuse to cast stones.

Anonymous said...

Chew thinks a lot like a child. Refuses to look at the seriousness of autism and puts her fingers in her ears when anyone wants to talk about the reality of it. She's also one big hypocrite. Writes lengthly blogs and articles about how wrong biomed parents are for giving their kids those oh so harmful vitamin supplements yet she drugs her kid with large amounts of heavy duty psycho meds. Makes one wonder what her goal is for her son. Drug him and babysit him.