Edmonds Kind of Dad: Treating autism — how do you know what works?

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By David Kaufer

One of the most common questions I get from friends and family members is “How is Stone doing? Is he still making progress?” And fortunately, I’m able to provide the same answer most of the time. “He’s doing great, making slow and steady progress. He’s happy.”

What does progress mean when you’re dealing with highly functional autism? Well, that’s hard to say. For me, though, the most basic area is communication and vocabulary,  since those are the areas most lacking. As long as Stone is adding words, trying to use longer sentences, etc., I see that as progress. It just happens at a much slower pace than it does with most other children.

The other question I usually get is, “Is his therapy working? How about the food and special supplements? How do you know what works and what doesn’t?” And here, the answer is a lot more difficult. Because the bottom line is, we really have no definitive way of knowing what is having an impact (and how much) and what isn’t.

On the food and supplement side, we work very hard to try to keep Stone on as much of a casein- and gluten-free diet as possible. We do pretty good here but agree we need to do even better. He still is able to grab bites of french toast or peanut butter sandwiches made with normal bread – so who knows how that affects him. But he has absolutely zero dairy products (no cow milk, cheese, ice cream, etc.) and this is an area we’re very strict because we’ve seen it impact him dramatically if/when he has accidently had some. Any parent who has tried to restrict their child’s diet knows how difficult it can be. And in our case it’s a little more challenging because of Stone’s twin brother – how much of the restricted diet do we force him to accept just because Stone can’t have stuff? And if we don’t restrict it for Ty, how do we keep it out of Stone?

We have a medicine cabinet and refrigerator full of vitamins and supplements as well. Why so many? Well the short story is that we are believers that Stone, like most kids with autism, has GI-tract issues that, among other things, impacts his ability to properly digest proteins and absorb important vitamins and minerals that are critical for his brain. This can also result in yeast build up in the digestive tract (which creates bloating, gas or other unpleasant issues). So Stone receives probiotics daily in his juice – this is a must (otherwise we do see the impact). He also receives liquid Co-Q10, liquid Vitamin D, lots of gummy vitamins and omega oil (when possible). A key phrase here is “when possible.” Because it’s often easier said than done when trying to get Stone to take this stuff. We try to mask it in juice, ice cream or other foods – but he has become wise over the years and now smells food or drinks to see if he detects anything amiss. If so, he simply won’t touch it.

So the bottom line here is we have many challenges: figuring out what we should give him, how often, and then how to deliver it. And then, does he actually get it all? And if he does, how can we tell what is having an impact and what isn’t?

On the therapy side, we have had Stone enrolled in a special needs preschool class since his 3rd birthday and for the past two years he has been in extended days for two days per week (two extra hours with a separate special education teacher). He also began Association for Behavior Analysis occupational therapy on his 3rd birthday and receives this for an hour weekly. Last May he started speech therapy, also for an hour a week. And in the summer we enrolled him in a school/program through a woman who specializes in treating children with autism. So Stone has been getting a lot of attention from a lot of different professionals – in addition to the special diet and supplements.

What’s working? What isn’t? How much of his continued development and progress is simply the result of him growing up like other kids? We’ll never have any way of knowing for sure. But like parents of autistic kids everywhere, we feel we can’t be complacent and simply to expect Stone to “get better” and suddenly develop the capability to communicate easily and clearly like other kids. We know we have to provide as much support and resources as possible – even when we’re not sure about their impact.

David Kaufer is a fun-loving Super Dad of 5-year-old twin sons, an insane Oregon Ducks fanatic (follow him on Twitter @DavidKaufer), advocate for green/sustainability and autism issues, and connoisseur of Northwest microbrews. He and his wife Renee moved to Edmonds in 2005 to raise their family (and enjoy the gorgeous views).

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