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education not judgment
by katherine l (aka clevertitania) (@CleverTitania)

In a chat room once, I had a pediatrician tell me there was no way there is any correlation between Autism and ADD/ADHD. Now I’m wishing I’d done a quick google search in that conversation. I’d wondered if there might be a similarity between the conditions, like Dr. Oliver Sack’s found between Encephalitis Lethargica and Parkinson’s. I believed that the pediatrician was correct, and my theory was faulty, because I had always assumed that Autism was diagnosed partially by studying the child, and partially by some medical testing (such as an MRI). It turns out, there is no test. In fact, based on a cursory screening I viewed for toddlers, I imagine the questionnaire for Autism screening is similar to the questionnaire for ADD/ADHD. And I can tell you, from experience, it’s a long one.

That’s something I bet a lot of people also don’t know about ADD/ADHD. People love to say that we’re just taking basic childlike behavior and treating it with medications. But have any of them actually looked at the process parents, children and doctors go through before confirming the diagnosis? Do they know about the 3 times a year screenings of any changes in the children’s behavior (technically the 4th is their well-child checkup)? They do know that most of the medications prescribed for ADD/ADHD are controlled substances, but do they know that it requires a new prescription paper be picked up at the doctor’s office every month, and it cannot have refills or be called in. They think we just pop in to a doctor one day, tell them our kid is uncontrollable, and then pick up a bottle of pills every so often.

Let me educate you. Not only is the monthly rigmarole frustrating, there are a lot of other issues that go into choosing to use medications on your child to control behavior (notice I didn’t say ‘their’). First of all, based on just the people I’ve encountered/seen/read about, at least ¼ of the country thinks you’re automatically a lousy parent. Think about that. A significant part of the country’s population just assumes that every parent treating their child’s condition is either an idiot for thinking there is something wrong with their child, or is a lazy useless person who refuses to just take care of their kid. Without knowing anything about what is involved in your day to day life, they think less of you in an instant. And if you defend your situation with facts, they will often become even more condescending.

Then there’s the task of dealing with others involved in your life. Family members are people too, and we all know how families love to judge. Distant relatives can be especially presumptive, given they only see the child at family functions. And every parent of an ADD/ADHD kid knows, you DO NOT forget pills on mornings of family functions. Not unless you enjoy yelling and exhaustion induced shakes. Teachers can also be hit or miss. By now, most of them seem to have seen enough children to know there’s something legitimately going on here. But you’ll see a few who look askance. Plus, it puts a drain on their time, because one of the items you have to bring to the 3 month screening is a shortened version of the big questionnaire filled out by a parent and a teacher. A teacher’s time is already short. They don’t generally like you adding more on.

Oh, and there can also be internal family issues, for instance; when parents don’t agree on the diagnosis. My son’s father, after being informed of what we were doing, called the doctor and teacher himself, and ranted and railed at them for daring to suggest there was anything wrong with his child. He also tried to sue for custody. But he also wasn’t the one who was called about three principal office visits in the beginning of kindergarten. He wasn’t the one dealing with the difficulties of just trying to teach him to tie his shoes, when he couldn’t even keep the instructions in his head after the 10th time. His father is also quick to remind him that he should be able to control his behavior without the medication, which has caused some frustrating conversations between my son and I. Fortunately he has a wonderful pediatrician, who is one of the most respected in the tri-state area, and has a truly learned how to talk to kids with ADD/ADHD. She’s also been his doctor for pretty much his entire life.

And then there’s the issue of adjustment. A lot of people think, well the kid starts getting fidgety again, we just up the meds. Not exactly. First off, all medications have a max that is safe. And most have a max strength based on the child’s weight. Sometimes, during a growth spurt, you’ll notice less efficacy in their medication, or that it wears off too early in the day. But if they haven’t put much weight on, you can’t adjust their dosage. Additionally, some children build up a tolerance to the medications regularly. My son has only had one medication that didn’t work at all, but he’s been on 5 over the years. Eventually he builds up a tolerance to something. If he’s on the max dosage, we have to switch to another medication. If there have been any new drugs found, and they’ve seen any success, we’ll usually try those. If not, we rotate to something he was on a few years ago. We tried Straterra within a few months of it being available. Unfortunately, this is the one medication that didn’t work. When we moved him gradually to it, his was barely in control of himself. We did this during the summer, so that it wouldn’t interfere with his school work. After a couple of weeks on just the Straterra, it was clear it had next to no affect on him. I was extremely disappointed. Not only was it the one drug that was not a stimulant (which also meant he was less likely to develop a tolerance), it wasn’t a controlled substance, with all those headaches. So it could’ve been a big win/win.

So there are all the external problems of having a child diagnosed with ADD/ADHD. Now, here’s a little of the internal. Some children react wonderfully to the medication, and have no additional problems. Some children still have to work to maintain focus and self-control. For the latter, this means that homework might get done, but it also might get lost any time between completion and class time. Organization is a problem. Even if you do everything you can to help them (my son was using a Pendaflex at one point), if they don’t put things where they go, it doesn’t fix anything. Getting things done, like chores, can be a battle. Sometimes they are as frustrated as you, when they just forget to finish something they were doing. But as time wears on, they resent your frustration, and you resent them being resentful. It’s hard to push those feelings aside and see things from both sides. You try, and you work at it, and every so often you have a long conversation that clears a lot of air. It helps, but things can get very tense. There’s the struggle of knowing how hard it is for them, just to stay focused on a task. And there’s the struggle of not being able to just find that magic trick that’ll make it easier for them. You know, the Annie Sullivan/Helen Keller/Water moment.

Raising a child with ADD/ADHD is not easy, and it’s not something any parent really wants for their child. Some kids can eventually learn to manage without the medication, and some are even OK to not take it during summer/weekends. But that’s not all children. But whether they need to be medicated just to function normally day to day, or only have trouble concentrating enough to learn, the basics are still the same. Your child’s mind doesn’t work quite the same way as the general population. It requires special effort to help them deal with the day to day tasks of being a kid. Is that altogether a bad thing? No, it’s not. Many of the most creative people in the world have suggested ADD as a contribution to the ways in which they create. My son has a remarkable mind and he’s becoming quite a musician. But it also comes with a lack of focus (for my son it just borders hyperactivity) that can add challenge to doing even simple things, like playing a board game. Once, when he’d been on another rant of not needing his medication at all, I agreed to a demonstration. I let him go without his pills one morning, and then videotaped him that entire evening. He only had to watch 30 minutes to see what he was really like on his own. He’d talked non-stop most of the time, couldn’t even sit to watch one of his favorite cartoons, and changed spots on the couch at least a dozen times.

Are there misdiagnoses? Of course there are. Just like the increase of cases diagnosed with Autism in the last 10 years, coincides with a decrease in the cases diagnosed of Mental Retardation. This clearly indicates years of misdiagnoses of both these conditions. Yet, how many people assume Autism just isn’t real? That it’s some condition made up to explain why some kids are too quiet or easily confused? I’ve never heard one person express doubt that Mental Retardation is a legitimate diagnosis, and is just a crutch for parents who want to assume their child’s stupidity is a medical condition. But these mirror the sentiments attached to parents of ADD/ADHD children. We’re just dealing with kids being kids, and parents who can’t/won’t deal with it.

Spend some time talking to doctors who’ve really studied and worked with children with this condition. Talk to a parent who’s had to deal with it, maybe one of the many that have discovered their own ADD issues through their child’s diagnosis. Talk to teachers that have to try to teach kids who clearly need medication, but their parents are too afraid of the stigma, or too affronted by the suggestion their child could have anything wrong with them. Remember that just because you have no personal experience with the condition, doesn’t make it some fictitious invention of hypochondriac mothers and placating doctors. Anyone who does have personal experience can tell you. It’s very real.


When I grow up, I want to be; whoever Joss Whedon wants to be, when he grows up. I am a writer because it's the first thing I want to do when I wake up in the morning; aside from eating and using the lavatory of course. My work includes screenplays, short stories, film/TV/music reviews and socio-political commentary. The last one is a fancy way of saying I like to shoot my mouth off on many topics. I excel at using $1.50 words. They gone up, thanks to inflation. Isn't our economy awesome?

more about katherine l (aka clevertitania)


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published: 11.16.09

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