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World Autism Awareness Day

I try not to let my personal life intrude too often into the Bulletin, but as regular readers no doubt know, it does happen from time to time. Today is one of those days, because April 2nd has been designated “World Autism Awareness Day” and I’m going to take this opportunity to help make more people aware of it.

When my son Porter was born the night before 9/11 in 2001, we awoke that next morning in the hospital, exhausted and a little nervous at being new parents. Our nurse came to tell us something was going on in New York, and we turned on the television just in time to watch the the plane fly into the second tower. Like everyone else, our lives were changed forever that day, but my life also changed for a very different reason. My son hit all his physical milestones on time, and a few even earlier, as he began walking at nine months. At times he didn’t react to loud noises and we were worried about his hearing, but were reassured after a hearing test declared all was right with his ears. By his first birthday, he wasn’t saying anything yet, but the pediatrician and our friends all told us not to worry, as every kid develops in his own time. We continued to be concerned, but bided our time, fully expecting him to start chattering away at any moment.

Porter at his first birthday party, trying unsuccessfully to drink some Russian River beer.

Unfortunately, it didn’t work out quite that way. By eighteen months, he’d said only a few words, primarily nouns for the things he wanted; food, milk, etc. By age two, things had not much improved and we took him to the Oakland Children’s Hospital. They said nothing beyond a speech delay and suggested we enroll him in preschool where he’d be around other kids who might encourage him to start talking by example. We did just that, and although things did improve somewhat, he continued to lag farther and farther behind his peers in terms of language development. When I’d pick him up, I’d sometimes watch him off playing quietly by himself while the other kids all played together. It was a heartbreaking sight and one which still chokes me up just remembering it. He looked so lonely in those days. He looked like he wanted to play with the other kids, but because he couldn’t talk to the other children he was essentially isolated much of the time.

Just before he turned three, my sister-in-law, a librarian and crack researcher, started noticing other things about Porter, probably because she didn’t see him as often as we did and so they stood out more for her. For example, he wouldn’t make eye contact with anyone. There were enough other language, behavioral and social skills symptoms on the checklist that fit him that we thought we were finally onto something. So we had a doctor with behavioral expertise examine Porter and also our local school district, who are theoretically bound to provide an “appropriate education” beginning at age 3, did their own analysis. Both came back with a diagnosis of autistic-like symptoms. Despite all the horror stories we’d read about autism, we were at least satisfied that at last we felt we knew what was going on, and that provided some comfort. It was certainly better than having no idea what was wrong. So I quit my job as the GM of the Celebrator Beer News to be home with Porter. He attended a special preschool run by the county where we live and we hired therapists, play tutors, and an occupational therapist. I did flash cards with Porter, read to him and just was there for him as much as possible. Little by little, he improved and began catching up to his peer group. By five, he was nearly caught up, though he was still often the odd kid out because of issues with pragmatics and his poor understanding of social skills. The school district pressured us to have him start kindergarten, but we resisted because we didn’t feel he was quite ready to be thrown into the deep end of the pool. They were worried about their budget; we were worried about our son. They refused to give us any additional assistance (it’s sadly a familiar story) and we considered suing them to force then to follow the law, but decided in the end that the money would be better spent on Porter. So we held him back a year and had him attend another preschool that modeled kindergarten but was more hands on in the hopes that the extra year would make him more prepared to start school.

Five years later at his 6th birthday party, shortly after starting kindergarten.

The extra year ended up being great for him and since we moved to a new school district, we happily now live in a place with a more responsive, caring group of educators. He’s been doing great academically through two report cards and has received all satisfactory and excellent marks. He’s not only caught up with his peers, but is actually doing above average these days, and we couldn’t be prouder of how far he’s come. He still has some social awkwardness and certain difficulty with playing sports and games, and interacting with other kids. He’s made a few friends, and he’s certainly better at it than he used to be, but he may always be the odd kid in his class. Given his parents (you know you were thinking it) that may be inevitable. A more recent evaluation suggests that despite his speech delay he may have Asperger’s Syndrome, a higher functioning spot along the autism spectrum of disorders.

What causes autism is the subject of much heated debate. Personally, I believe that mercury, while certainly not the only cause, is somehow linked to triggering autism. But because of what’s at stake, medical, pharmaceutical and government officials will never (at least not in their lifetime) ever admit that they unwittingly caused a generation of children to become autistic. This failure to even honestly address this possibility is at the heart of what bothers me about all of this. Autism was almost unheard of when I was a kid, but today something like 1 in every 150 kids has some form of it. There are thousands upon thousands of parents who watched their children deteriorate after receiving cocktails of government recommended shots, earlier and more often than during my generation, laced with mercury (as a preservative), one of the most toxic substances on Earth. For an excellent account of this, and the politics surrounding this issue, read Evidence of Harm by David Kirby.

Many autistic kids also have trouble with their stomachs, usually called leaky gut syndrome. A form of a gluten-free diet is sometimes recommended, which is how I originally got interested in gluten-free beer. That’s what led me to write an article for New Brewer last year on these non-barley, non-wheat beers.

But beyond the cause of autism, awareness is growing. There are many fine organizations that have sprung up to spread the word, raise money for research and lobby the government to be truthful. Some of these include the National Autism Association, Autism Speaks, No Mercury, and Safe Minds. There are undoubtedly many more, too. Consider one of them when it comes time to make a charitable donation. If you organize a beer festival and are looking for a charity to partner with, perhaps autism would be a worthwhile one to consider. I’m not familiar with any current beer festivals tied to raising awareness of autism, so perhaps it’s time. I’m certainly willing to help. Thanks for reading.


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