Saturday, February 2, 2008

How to Spoil a Good Lunch

This is a story of my first Autism Conference.

This conference took place in Pasadena in summer of 2006. The plan was for me to go and for my wife to stay home with the boys (who were then 4 and 3, respectively). Since Pasadena is a solid 2.5 hours drive away, I decided to get a hotel room for a night (it was a 2-day conference). That way I could spend the in-between evening perusing and disseminating any info I would glean from the various sessions instead of fighting Southern California traffic.

I went with the highest of hopes. I would see Temple Grandin speak! Carol Gray, the creator of Social Stories, would be there! All kinds of service providers would set up shop! And, best of all, there was to be a "Dad's Luncheon" the second day. Dad's only - a chance to mix it up with people experiencing and adjusting to some of the same things I was. Perhaps I could have the satisfaction of either receiving or giving some incredibly useful piece of advice or wisdom. I was thrilled!

Temple was very interesting and informative, as I'm sure she always is. I was surprised and a bit unsettled at her endorsement of anti-depressants and anti-anxiety meds as being essential to her well-being, but who was I to judge? I was wondering if these things were in Jason's future as well. Carol Gray was marvellous. Other presenters were not so impressive as I had hoped. I recall Doreen Granpeesheh speaking, and getting a feeling of 'detachment' from her. I'm not sure how else to describe it. It was as if she was talking about automobile repair or something. The conference was hosted by Jim Adams (who I now am familiar with due to his involvement in a seemingly failed chelation study in Arizona.) I had no idea that what I had attended (I was unaware of the divisions in the autism community at the time) was basically a cure-oriented, biomedical conference.

A turning point in my approach to parenting happened during that conference, and it happened during the Dad's Luncheon - the thing I most looked forward to attending.
We all settled in for lunch, probably about 30-35 of us. We were given a cold box-lunch. The usual - a soggy ham sandwich, a small bag of chips, an apple, a cookie. We were sitting at various round tables dispersed through a medium sized room. As some stilted, uncomfortable small talk took place, we all munched away at our little lunches. After a short while, 2 guys stood up and introduced themselves. They apparently travelled with this conference organization regularly and had these Dad Luncheons at each stop. As I soon came to realize, they seemed to revel in relating to all of us just exactly how difficult their lives had been made by their autistic children.
And, oh how their lives were difficult! They were having trouble making ends meet. One had to quit his job. They didn't have any of their old friends anymore. Their sex lives were non-existent. Listening to them, one would think that they should be martyred for their long-suffering existence as parents of autsitic kids. And the things they'd tried and done to cure the autism! The sacrifices they'd made! I was sitting there, just incredibly disappointed. And I felt embarrassed for them, as I assumed the other 'Dads' in the room were feeling just like I was that the Dads' Luncheon was actually a two-man pity roadshow.
Then the bomb dropped (though only two of us knew it had happened). One of the talkers was asking questions of the group, trying to get people to interact and respond. It was mostly falling short, until one question came up.
"How many of you guys have ever thought about killing yourself? Or about killing your kids, just to put a stop to all of it?"
All but two hands went up in the room. Me and the guy sitting across from me - a dentist or doctor as I recall - were looking around, absolutely agape. Our eyes met, and we shared a moment of stunned, shared recognition of our aloneness in the room.
The Q&A then continued on, and I don't think anyone noticed what had happened except for the two of us. Here's guessing that, somewhere out there tonight, that guy and his family, I and my family, are faring much, much better than the roomful of Dads who harbored thoughts of suicide and homicide.

Immediately afterward, I remember calling my wife and telling her what had happened. She, too, was amazed. I mean where else is this an acceptable thought? Imagine that same question being asked of the Dads at a little league organizational meeting. Of the Moms at PTA. At Cub Scouts. At Sunday School. Anywhere else. It boggles the mind. And lest one think that this mentality does not, in many cases, play itself out to the worst case scenario, please take a moment to browse this ongoing journal by Joel Smith. In it, Joel provides updates of news reports of abuse and murder of autistic people. Karen McCarron will soon be sentenced for the murder of her daughter Katie - will Karen receive a full sentence, or will she be sentenced lightly because, after all, she was dealing with the stress of trying to raise an autistic child? If she is sentenced lightly, it is the mentality apparent in that room on that day that we have to thank for the travesty.

I think any consideration I give to the more extreme and belligerent elements of the Biomed community (because that's who these people were) and those who provide them the products and services they crave, has been tainted since that day. It was a glimpse inside the acceptable mentality of those who have a parenting sense of entitlement. Those who simply cannot accept that they have brought a child into the world that does not fit their preconceived notions of what is 'right' and what is 'acceptable', and their child must be fixed.

I've been waiting a few years to get that one off my chest. My rant is over now.

15 comments:

Matt said...

Wow. Did they at least discuss the murder/suicide stuff after bringing it up? Like, "seek help if you ever have these thoughts again"? Or, "of course we all know this is a really bad idea"? Or, "those thoughts do go away."

Schwartz said...

Steve,

I'm shocked. Sad though it is, if you read the news, murder/suicide by men is not that uncommon.

I'm saddened that you automatically associate this attitude with every man in biomed because it seems to be a bit unfair.

I'm curious as well about Matt's question. Anyone still having thoughts like that should get help.

Steve D said...

Matt - No, there was no discussion. It was just kind of a knowing, sad agreement on behalf of those present. What they were looking for, I think, is justification for their feelings.

Schwartz - Murder/suicide by anyone, regardless of how common, is terrible. Ask the families of murdered autistic people sometime.
You need to avoid allowing your anti-vaccination worldview, and its resulting effect on your view of autism (i.e. as a 'diseased' or 'damaged' population) to prevent you from seeing right from wrong. What those Dads were doing is to embrace a highly dangerous 'groupthink' mentality.

Ms. Clark said...

My word. I think if they had next served Kool-Aid I would have ran from the room.

That's way creepy. And to think that it's possible that these guys did this repeatedly with other groups of biomedder dads. It would be interesting to know if they could get that kind of response from, say, floortime dads or ABA dads. I don't have a guess as to how the vote would go in those groups.

I'm glad you were at the same table with the other non-suicidal-homicidal dad.

Geoff Fargo said...

As a Dad of a kid on the spectrum, the destructive and self-absorbed whining of the other Dads at your table elicits from me a rage not befitting my normal, easygoing character.

People who are so hung up on themselves and the tragedy of their current circumstances are not helping their child, and in this Dad's opinion, they're doing nothing to help bring about this "cure" they keep seeking.

Accept what is beautiful about your kid and help him through the rest.

Navi said...

wow. I can't believe they even voiced that opinion. regardless of how our justice department handles it, I'm of the opinion that anyone that seriously harbors those feelings needs serious mental health assistance. Unfortunately, one has to be completely off the wall crazy before anyone will attribute anything to a mental health issue... but that's a whole other story

And I can see how this attitude is associated with biomed. because its the biomed groups that promote it, and say its okay. No. its not okay. maybe its not so abnormal, but that doesn't make it okay. yes, you need help if you feel that way. Unfortunately not enough people are willing to work to remove the stigma associated with mental health issues that not enough people seek help (plus the healthcare system doesn't make it any easier but again, that's a whole other story).

my first conference was hosted by a biomed leaning group but had a variety of other informative groups there as well. My son was young, and newly diagnosed. I had yet to experience any of the hurdles of "I can't watch your son, he's too hard to handle!" because at that point, being only 2.5, he wasn't really that much more difficult than your average 2.5 yr old.

I was repeatedly astonished by parents whose children were far higher on the developmental scale than my son, who were envious because mine was hyposensitive, and loved hugs (I was busy pondering what it would be like to have a 10 yr old who insisted on being picked up and hugged all the time). I was repeatedly told that my attitude towards my son was the right one to have, and that's probably why he's so much more open to others.

You know, I have no idea if that's true. If because I accept him, he's 'friendlier' to adults (he only started to acknowledge peers that aren't his siblings at around 4, he's now 5). I've learned from my eldest, that often the way a child acts has a lot more to do with that child than his or her parents...

But I came out of that conference feeling somewhat empowered. There was the communal whoa is me. And there were people from the community mental health department whose response was deal with it, find a solution or accept it, and get on with your life. Though I think the real answer lies somewhere in between the two opinions. I ran into a few parents whose kids had some of the same issues my son did, and it was comforting knowing you're not the only one, and there really isn't much you can do about it, and that's okay. I'm glad my first conference experience was different than yours. I think I probably would have run out of the room screaming myself...

my husband has some mental health issues (though threatening our son's life because of his autism isn't one of them, thankfully)... which I was trying to help him get resolved (we're finally on the right track) and a relative's response to some of his issues were 'he's stressed' and 'tristan's difficult.' I came this close to verbally wringing the person's neck... no, it's not our son's fault, don't even try and blame it on him...

mumkeepingsane said...

OH wow. That sounds really creepy. I asked my husband about this and he reminded me of our first conversation after Patrick's diagnosis. We were walking away from the psychologist's office (in the hospital) and I turned to him after a moment of silence and said "well, it's not like he has cancer. Imagine all the moms in this hospital sitting at their children's bedside. At least we know he can live a long and healthy life and now that we have the diagnosis we can help him reach his best potential." And with those words we started our journey. My children's lives are so precious to me....

Anyone having thought about killing their child needs to seek immediate medical help.

Club 166 said...

Whoa, Steve.

What a bad experience to have, right from the get go.

But perhaps the fact that those people were so way "out to lunch" in the first place has helped you get yourself to where you're at now.

Joe

Bev said...

Thank you for sharing this story, Steve.

I have to wonder how many times this same scene has played across the world at the many conferences where autism is discussed as an enemy to be defeated or a tragedy to be endured. It is truly terrifying. Especially the Groupthink aspect, the mindless normalizing of this kind of thought and speech, the consequences of it not even considered by the persons posing the questions.

Kev said...

I remember you telling me this story last time we spoke on the phone. Its just as awful hearing it this time as well.

It sounds to me like an 'echo chamber' or self-fulfilling' thing - you get talked at by 2 blokes determined to feel bad for long enough and you're going to feel bad too. These guys are the anti-Peale - the power of negative thinking.

Now, you know my history. I am aware of the thought process that leads to suicidal thoughts. It doesn't shock me too much that people - especially men - can easily convince themselves to think that way.

But homicidal thoughts? No way, not ever. That is abnormal in the extreme. People thinking in these terms need to seriously consider if they're doing the right thing being around their kids at all.

Sharon said...

What a shocking scenario. It's terrible to imagine that the 2 men who go around these conferences organising the lunches for Dads, will probably always ask that question. It's as others have said, the worst kind of group-think.

Another Voice said...

I have encountered this need for martyrdom before, it is very common among those who are desperate for someone to blame.

I have encountered a good deal of hostility when I enquired about the impact of their attitudes upon their children. They feel that their children can not sense their feelings, I feel that all children can sense the emotional levels of their parents. The conversation is very short once you agree to disagree. One person views an empty shell, another views a child that is having difficulty processing and expressing; not much common ground there.

Schwartz said...

Steve_D,

I apologize if you found my post offensive, as I did not intend it to be.

As I stated on Kevin's site, this topic resonates with legal discussions occurring where I live around the rights of people with disabilities and a particular case where a father was imprisoned (against popular believe) for killing his daughter and was recently denied bail for not expressing remorse after many years in prison.

I can't claim to ever have been in a situation that you described, nor can I claim to associate with your situation since I do not have an Autistic child. However, I can assure you that my post here has nothing to do with my scientific positions or any similar agenda.

This will be my last post on personal topics here, as I clearly misinterpreted your post and utterly failed in communicating effectively. Feel free to delete them all if you wish.

Kev said...

"need for martyrdom"

Thats exactly right. Great phrase.

Laura said...

People suck.