4/27/2011

Autism Now: A Divide Along Ideological Lines or An Inability to Empathize?

If you look around the forums and the blogs discussing the Autism Now series, you'll see that it divides largely along the main schism in the autism community: folks who think vaccines caused their children's autism and that autism is a systemic, whole-body disease appreciated MacNeil's reporting, and those who reject vaccine causation and Wakefield's rewriting of autism as a gastrointestinal issue, coupled with those who favor including autistic voices in any discussion of autism in general, feeling rather negative about the series.


I've already written that I feel that "MacNeil’s view of autism and autistic individuals is one that negates the quality and the value of the autistic person’s experience. Ironically, the routine stereotype of autistic individuals using people as objects is in obvious display, but it is the family members who are treating the autistic family members as objects: objects to be pitied, objects to be resented, objects to project all the family issues onto."


Are we so locked into our own particular circumstances that we cannot peek out from that narrow position, whatever that position may be, and try to get a reading on how this might impact others? I think some of us are, and I strongly suspect that nothing we do will shift those who are our polar opposites and melded to their particular ideology. 


At Science 2.0, I was accused of being callous because I wrote that "it isn’t easy to parent children with autism and I’m not suggesting a joy of autism documentary that ignores the struggles for all involved. I suspect, however, that it isn’t easy to parent children period, and by putting the focus on how parents and sibling are affected by a child’s autism and ignoring how the person with autism is impacted, the end result here is a peculiar narcissism that denies the autistic individual his and her rightful place at the table as an active participant in the discussion of what it means to be autistic and what it means to live with autism."


Maybe it's that I've been doing this whole parenting of an autistic kid for nearly 22 years now, but the wounds of the initial diagnosis and realization have all healed over; they aren't raw, even though we dealt with the realization and diagnosis of autism in our daughters four years ago. Other, new challenges often wound and surprise in that process of fresh hurt, but not the acceptance of autism in our lives. We were better equipped with the girls and we'd already admitted they were developmentally delayed and different by the time they were each a little over a year old; they were doing much better than Bobby, so in comparison, it seemed easier. It hurt less, and I am forever grateful for the 12 years we had with Bobby before Lily came along. He made me a better parent and a better teacher.


And I never questioned whether it was vaccines; there were no adverse effects and never any reason to assume that the autism was the adverse effect from vaccination (as so many parents do), either. Their brother had autism and we knew when we had the girls that we had a slight chance of them being autistic, too, but far less a chance of them being autistic than them having Factor V Leiden, the blood clotting disorder that caused Bobby's stroke and that lies silent (for now) in my husband. We had a 50% chance of them inheriting that, and that was far scarier than autism ever was, even with the degree of severity we dealt with in Bobby's autism.


So I can try to put myself in these vaccines-are-the-culprit parents' shoes, but ultimately I bounce right out of them. I'm not interested in speculation. I really dislike people choosing to bullshit their way to solutions rather than investigating what is scientifically known. I prefer "I don't knows" to believing something that is woo-based or otherwise in defiance of known science. The closest I can come is to recognizing that the heartbreak and despair they feel as they struggle to find the right path for their family is the same in kind that Rick and I faced once upon a time, only we had it easier. We didn't have the wealth of misinformation or the sheer number of charlatans trying to make us go broke curing our child. It was simpler because there were no magic cure promises, no recover your child cures. It was, instead, a bleak picture of the future and the realization that there was no substitute for hard, day-in-day-out work, first with Bobby, and then with the girls, countless hours spent mastering the simplest of skills and the breakdown of what felt like natural-as-breathing skills into constituent parts and the repeated effort to master the parts before the whole. 


It was grim determination to prove the shrinks wrong and a refusal to yield. And after our son's stroke, it was a reassessment of what was most important: our son's sweet soul and the need to fill his life with meaning and joy. If another stroke could strike at any moment, then everything shifted. It became about making his life as full of quality as possible. It meant no regrets, no wasted moments, and above all, letting go of bitterness.


I can't watch portrayals of autism and not see it from the other side, from my son's side. I cannot watch or read people talk about autism and lost children, the soul gone from their eyes, and not feel these parents have missed the boat. I held my autistic son in the midst of the stroke, as its effects coursed through him and he became paralyzed on the right side, as he lost what speech he had, as we feared we would lose him. We've worked with him tirelessly to overcome those harms that the stroke caused; we've worked with him to get around the roadblocks we learned to envision in his mind in the area of his left thalamus that was destroyed by the stroke.


I can't not put myself over there, in the shoes of autistic people, in my children's shoes and not see that series from their perspective, just as I couldn't not see Loving Lampposts from the perspective of parents struggling under the weight of their children's overwhelming disability. It's not because I'm some super woman and somehow superior, either. It's because I've been there and done that and come out the other side, in terms of the overwhelming disability. And for the life of me, I can't get that these parents who most love what MacNeil did at PBS don't see it from their children's perspectives, either, just like I don't get that folks can't see that sometimes the struggles are significant and the challenges that families face so great that they simply can not do it alone. 


I cannot help my children learn to navigate this world if I don't do my damnedest to understand how they see this world. How is it that other parents, parents struggling to help their children do the same thing, can't see the harm in how they discuss autism, in how they discuss their children? How do they miss that a conversation about autism that doesn't include a consideration of autistic individuals' feelings is less than empathetic?



21 comments:

melbo said...

I've been reading your posts on that series and people's responses to them, particularly the one below. I am astonished that some cannot see what you are saying.

(Another spooky coincidence: Factor V runs through one side of my family too. It seems likely that my mother's father had it but she doesn't so we were spared. We didn't even know about it until ten or so years ago and we all had to be tested).

Aspergirl Maybe said...

Powerfully written. (And I hope this means your migraine is better.)

Autism & Oughtisms said...

In the years since my son's diagnosis, I have moved from anger, sadness and confusion, to a sort of more joyful acceptance of both my son and autism. I don't particularly like looking back at how horribly hard and painful those early years were for us, but I do remember, and those are some truly unpleasant memories. I strongly suspect though that my change in attitude towards autism is not just a product of "getting used to it over time", since my son's autism has become significantly less severe in those years too. I try to be open-minded to other people's experiences and attitudes towards autism, they vary as much as the spectrum does. I still draw a line though - dehumanising autistic people is unjustified and an in-road to some truly horrendous efforts to "cure" them of their inhumanity. It was arguably dehumanising to leave autistic voices out of the documentary you are talking about here (which I have not seen for myself). Enough to say I am not tempted to watch it, it does not appear to have anything to offer me from what I've read both here and else-where.

r.b. said...

Comes a time when a parent realizes it is not their child that needs to change, but them. Acceptance, suspiciously, arrives about the same time.

It doesn't matter to me what caused or didn't cause Ben's autism. He is who he is, and no backwards thinking is going to change that. And if I can't appreciate him I've kinda failed as a parent.

The series shows more where the MacNeil family is in regards to their child's/grandchild's disability than any truth about autism. He who has the megaphone decides the story, decibels trump all else.

Still, very little is known of autism by the general public. We who live and breathe it can't imagine a day without autism. I'm not trying to be a polly-anna...but at least if the general public thinks it's the shots they'll lay off the "that kid just needs a good beating" mantra. Or, "those parents must be monsters" mantra. When I believed the vaccine story, it gave me room to stop the self-blame. That much, I swear, is true. Once I moved past that, acceptance wasn't far behind.

Spinning circles in my own little feverish mind...sorry, ha! I ordered some seeds of that exquisite flower. They are sorta like bachelor buttons...only fancier. How do you deal with weeds? I do container gardening because they tend to overtake anything else I try to grow...

Life in the House That Asperger Built said...

Well done, Kim. On all fronts.

kathleen said...

Yes on everything.. eloquent and strong. I find myself increasingly perplexed from a parent perspective. It appears-at least to me, that the word "autism" has become(to some) a faceless thing..something you can pick up..or put in a box-an entity unto itself. When it is perceived that way it is quite easy or maybe just convenient to forget that we are speaking of people-human beings. That frightens me.

farmwifetwo said...

"Acceptance comes when parents need to learn to change..." Now there's a comment I can tear apart. EXCUSE ME!!!! I have NEVER changed. Never changed my opinion, never changed my strategy (I am flexible in my methodology), never changed in my dealings with my children... They have autism, but they are not special, they don't get catered to, and I do not sympathise with either of them. They have to learn to deal, they have to learn to cope, they have to learn to learn.... It is my job to PARENT. It is my job to get services, it is my job to read bedtime stories, it is my job to toilet train, it is my job to tickle and push swings. It is my job to get speech services, it is my job to take them to swimming lessons. It is my job to get/teach them the tools to nagivate this world, it is my job to make certain services are available for them....

BUT, it is NOT my job to allow them to say "I have autism therefore I cannot...." which IMO many adult advocates do. If they didn't then why do those, like myself, who do not need services, join the "look, I have autism, therefore I know all about it and you have to listen to me not those parents" train. If not to garner sympathy.... why join the "club".

To this day my 11.5yr old has never been told he has autism. And starting Gr 9 when I have to tell him something I'm leaning towards simply telling him about the claustrophobia. Why?? B/c IMO Aspie parents cripple their children with their "you have autism, it's ok if you cannot do..." Mine has gone from mild PDD (non verbal) to mild NLD. Mine has never been told "you cannot". Mine except for some poorer social skills, short term auditory and visual recall which is improving quickly now that we knew what was wrong, and his claustrophobia... Passes for normal and doesn't know he isn't "normal". We have dealt with the speech, the delayed academics (he now gets A's and B's in a regular Gr 6 program), and the excessive behaviour (headbanging).

Our goal with the youngest is to catch up to Bobby... we're getting there.

We live with autism, autism is a reason in our house, but it is not the excuse. Autism doesn't require acceptance, it just is. What autistic children deserve is parents that give them the tools to live full lives to the best of their ability.

We PARENT every day... and we're doing AMAZING.

MJ said...

Very ironic.

r.b. said...

So you don't accept your children, Farmwife2?

Socrates said...

feeling rather negative about the series.

Autism is a brain disorder, not a gift from God.

We're not watching whales at Big Sur; a documentary about autism is not going to be a remake of the Happy Feet, is it?

KWombles said...

Thank you, all, for the comments.

I'm going to respond to two commenters now:

MJ,

Not ironic at all; it is consistent with the previous two pieces about the series and, in general, with what I have written MANY, many times before, enough so that my husband asked me last night how many times I had to basically write the same post.

You have more than worn out your welcome at my blog. Feel free to comment at Science 2.0, where these posts are also usually posted (and where commenters are free to comment and where I feel no personal obligation to respond), but don't come back here. You apparently didn't catch the two times yesterday that I indicated your continued posting here was unwelcome, so I'm being blunt now. I will delete any future comments from you on this site without reading them. I find exchanges with you to be completely without merit.


Socrates,

I've been consistent in my contention that documentaries on autism ought to examine the spectrum from the severely disabled to the more independent. None of the three I've reviewed actually dealt with the most severely disabled, in all honesty, something I've noted.

My post (and in light of the posts I've done on autism documentaries this past month) didn't deserve that comment.

Heather K said...

You're so much nicer than me, Kim. I'd have just posted this: http://29.media.tumblr.com/tumblr_lkbxj5Ok1r1qgy0fio1_500.jpg

And told them both to GTFO.

Socrates said...

This works better.

Well, it made me the autistic I am today.

Nightstorm said...

Autism is a brain disorder, not a gift from God.

Sure it is, if aboriginal cultures treat schizophrenics and autists as shamans and if people believe that Julius Caesar was talking with gods during his seizures than sure lets view autism as gift from god. Depends on one's perspective.



r.b. said...

So you don't accept your children, Farmwife2?


Well duh of course not, and they haven't built her a proper statue of marble in her image so they can worship the almighty mother goddess.

Terrible shame

KWombles said...

Melbo,
Thanks. It’s getting to be a regular occurrence; I read someone misquote what I’d written in the previous post in a closed forum and the person took away the exact opposite of what I was saying. Some people read only what they want to. No point in even responding to them.

Aspergirl Maybe,
Thank you; yes, it’s finally gone. The bugger hung on through most of Wednesday, unfortunately.
Autism & Oughtisms,
You’d think people would see that it’s dehumanizing, but you’d also think people would get that electrically shocking the disabled to get compliance is morally and ethically wrong, and many don’t. And you’d think that people would be horrified that some states can restrain disabled children for hours at a time and throw them into seclusion rooms, but they aren’t. Some of the staunchest defenders of the most inhumane treatments of disabled children are the parents themselves. At least, and I can say this on a positive note regarding the Autism Now series, there was none of that on display.

r.b.,
There’s got to be a better way to help parents cope with the diagnosis. We’ve got to improve that parental supports and education.
The love in a mist is a gorgeous plant throughout all its stages. I love the funky seedpods they put out and I want to warn you they are hardy and prolific. I haven’t had to buy seeds in years.

Laura,
Thanks, and thank you for commenting yesterday!

Kathleen,
Yup. Me too.

Farmwifetwo,
Taking our jobs seriously as parents and working to help our children find their way in the world and around their issues is so important. Loving them and honoring them means doing the hard work.
I think maybe r.b. and you are using accepting and changing perhaps differently? Accepting that autism won’t be magically cured and removed and moving towards helping the child achieve his potential? I don’t know, but maybe it’s the same kind of connotation issues that I run into when I write about facilitated communication.

Heather,
Well, I’m sure some would say I’m mean and a hypocrite. And a pharma shill. Among other things, but I’m reminding myself that I don’t have to give them license to do so freely on my own blog. Let them do it where I can at least say I got .0005 cents to donate to Brian Dunning’s Skeptoid out of it.

Nightstorm,
I think that’s a harsh assessment of farmwifetwo’s comment; there’s a huge difference between the idea of letting autistic children be with no teaching (which is how some read acceptance) and working to help children learn how to function in the world. Perhaps there’s miscommunication going on here, but I’ve never believed that anything farmwifetwo has written indicated a desire for worship from her children. A healthy life with their potential reached, though, and that will only come if they , and the people in their lives, work hard for that to happen, just as it takes hard work from all involved in any child’s life (to include the child) in order for a child to excel.

Thank you all, again, for taking the time to comment. :-)

Socrates said...

Ms Wolf,

For me,

Autistic traits : good.

Autism: (on the whole) not so good.

Nightstorm said...

I think that’s a harsh assessment of farmwifetwo’s comment; there’s a huge difference between the idea of letting autistic children be with no teaching (which is how some read acceptance) and working to help children learn how to function in the world.

Kim I was making a really sarcastic comment.

We auties can be rather cynical you know.

I am just remember some of her rather martyristic comments when Suvillian wrote on how autists are the heroes and she got very bent out of shape and started harping on how she is real hero and how much she sacrifices while crapping all lover Matt's uplifting post (This was during the I am Autism clusterfuck). Her attitude in LBRB is very "MEMEMEME" some times and it gets grating. I know she and you have became friends that is all good. But she dislikes self-advocates like myself that don't have mommy and daddy holding my hand. So I tend to get snarky at her *shrug*

Ms Wolf,

For me,

Autistic traits : good.

Autism: (on the whole) not so good.


Mr first off. I may have a vulva but I am not a woman ;)

Perhaps that is for you. I take everything as it is. You move as you are.

r.b. said...

Miss Kim: Think about it. Who is missing from this discussion? The very people who were highlighted in the story.

If parents can't, who will speak for them? Don't Kristina Chew, Casdok, and Susan Senator stick by Aspies, yet tell their own children's stories, regardless?? If it's gonna be a slapdown of those woman, I refuse to listen. They are trying really hard. And they love their children unconditionally, as I've seen over years of "listening" to their stories. They wouldn't change their children, because they are who they are... but if there were a magic pill to help them end the sufferable aspects of autism (not the 'traits')that CAN'T be sugar-coated...even if that, I'm not sure they would change anything their children have taught them. It's just a mother's desire to see her children happy. AND safe!! AND not mistreated. Because that stuff happens too much.

Kim, I'm sorry. I just love to argue with you, because you are so kind to this befuddled, but stubborn old lady.

And Farmwife2, I was being facetious. I'm sorry.

KWombles said...

Rose,

It isn't that parents couldn't or shouldn't speak on behalf of their children; I speak on behalf of my own, and I wouldn't smack down those mothers, all of whom are friends, for speaking up on behalf of their kids. It isn't a problem with parents vocalizing their fears and concerns for their children, either.

It's that the series ignored the key element (and none of those mothers were talked to in that series or it would have looked very different): the autistic people themselves and a consideration of how the portrayal of how their autism impacted everyone else but them would affect them.

Who wouldn't take a magic pill if it could remove all the issues and leave all the positives intact? Who wouldn't ease their children's suffering if they could? :) I don't think that's at play here, either.

There is no magic pill, no shortcuts, no easy answers. Some parents are not prepared for that reality, not prepared for the hard work it will take to work around those areas of struggle. They take different paths in dealing with that: a few do nothing, embrace autism and don't work to mediate the core deficits. Others pursue alternative treatments and the promise of a magic cure. I think that both those groups have a common underlying cause for those actions: a lack of acceptance for the difficulties their child has and the need to work one-on-one at building skills in order to overcome those difficulties.

I posted some new love in a mist flower photos for you. :-)

Sirenity said...

Kim, you speak from the heart-I love it.

Well said, as always. <3

Hugs and Laughter

KWombles said...

Thanks, I appreciate it. :)