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.