Wednesday, July 08, 2009

Acceptability

One of the most annoying things that happens to us- fortunately far less often than it used to- is when people (complete strangers!) walk up to us in public places and recommend discipline for Joey. The behavior that people find unacceptable was most often that even as a larger child, he would often ride in the cart or walk around the cart. However, he does occasionally squeak or squeal in public when he has been denied an item or when being guided away from ordinary misbehavior, such as touching items on the shelves or begging for toys. Suggesting that I swat my child's bottom is simply and plainly Rude.

We now have our strategies in place for dealing with Rude People. My most common response now is to smile, thank them for their helpful advice, and walk away. If I am blocked at that point, I then note that Joey is autistic, and we are helping him learn to cope with public situations. This deals with the vast majority of Rude People. One thing I have not had to deal with is someone insisting that autism is the diagnosis-du-jour, a-la-Michael Savage. I think I would have to exert a great deal of energy to not slap someone who said something like that.

Fortunately, most the people we meet and strangers who approach us are mostly curious, helpful, considerate, gracious people who show much understanding and patience with us, and who can apparently read my bumper stickers or purse buttons (Yes! You can ask me about Autism!) The general push for awareness has had some effect.

With Andy's new diagnosis, I was expecting the ignorance of strangers- though honestly, I've only had a couple of encounters about Andy's behavior, as when it is just him and me, he's usually quiet. It is the ignorance of friends that has been startling.

After all, it is widespread in popular culture to consider ADHD to be a farce, a medical label for poor parenting rather than a real condition, somehow a conspiracy of bad parents to justify lack of discipline and medicate their kids into a stupor. Comments sections on parenting are full of this widespread attitude. The idea that kids are "overmedicated" for "rambunctiousness" even pops up in mainstream media. It is socially acceptable to deny ADHD and denigrate parents of children diagnosed with it.

However, I would think that if a friend of yours breaks the news that they have a child just diagnosed with the condition, upbraiding that friend just may not be the best way to show support and concern. Maybe that's just me. Starting an anti-ADHD diatribe and demanding second and third opinions may not be the best response to a friend who may already be upset and worried. I'm just saying. I can also assure you that it makes your friend very skittish to share the news with other people, and thus cut them off from needed support- especially when this is the reaction you get from not just one, but several "close" friends.

They may even turn to their blog and test the waters of their online friends, whom they consider more understanding of disability and conditions including ADHD.

Personally, I think the absolute best response I have gotten thus far was from Stimey, who (poor thing) got it full and immediate on the phone the day we got the verdict: "So... how do you feel about that?"

I am so fortunate to have you guys, folks like Farmwifetwo, Maddy, Niksmom, Club166, and Stimey who understand that a diagnosis is really about getting appropriate accommodations and services. Andy hasn't changed; we have a new perspective to consider what is best for him and how to help him learn important skills to get through life. Just like Joey didn't change when he was diagnosed as autistic. Andy is still going to be his energetic himself (I have no intention of medicating him unless it is proven absolutely necessary, just as we do not medicate Joey).

Yes, reminders of how to get through the process of getting Andy what he needs are appreciated; but lectures on ADHD as a "pseudo-condition" are really just annoying right now. I need real information. Lots of information. Accurate information. And I need it by the 15th, when our Child Study is scheduled.

7 comments:

kristi said...

I hate it when strangers come up to me and offer advice for MY child too!

And family and friends just don't get it and say, "He seems FINE."

Yeah, right. Come live with us and tell me that!

Niksmom said...

I kind of look at all the diagnoses as simply other "lenses" (like a stereopticon) that help us see the picture of our child a bit better or differently. I remember one of our early neurologists being uncomfortable at how we might react to an autism diagnosis (we were the ones that asked for the evaluation!). I told him,"I don't care if you have to call it 'cancer' if it means Nik gets the supports he needs."

And, you're dead right, Andy is still the same Andy you've always loved and cherished. That won't ever change. Now you can find some *different* (note, I didn't say "better" b/c you've done just fine already!) tools to add to your toolbox.

Sending hugs and support!

farmwifetwo said...

The ped told me yesterday that little boys PDD dx probably comes with one of ADD. We're having terrible attention/sensory issues all of a sudden over the last few months.

We're off to the Child Psychiatrist as soon as I get the paperwork filled in.

Those that think attention and hyperactivity issues don't exist either ignore it in their own children or don't have those issues. They would cheerfully drug themselves but a child "has to deal with it" which I think is wrong. An adult understands what's going on, a child does not.

I've developed a thick skin over the years and if someone puts down my kids with their "I know all" attitude... ::grins:: I can be rude back.... usually much more politely than they were to us in the first place.

Stimey said...

I'm so glad that I have evidence of a situation in which I did NOT put my foot in my mouth. Hooray!

In the early days, I had a lot of people tell me that they thought Jack couldn't possibly be autistic because they thought it was what I wanted to hear. What they didn't get is that their uninformed, casual opinion undermined everything I had researched, observed, and thoughtfully come to believe.

This is a great post. I really like your second to last paragraph. It is so true.

Sue said...

Hi,
I am a special education teacher of 8-11 year olds in Australia. Most of my kids have a diagnosis of ASD and lots of other comorbid conditions. This year I have spent a lot of time trying to create an environment that will help them to self regualte their arousal levels and keep sensory input in the positive zone. I have been teaching for 20 years but this year, I think that my kids with ASD and/or ADHD have taught me it's not about changing the child it's all about creating a 'right' environment for them to learn and live in. The world outside my classroom is crazy and I deal with lots of the same issues you mentioned when I take the kids out in public. The world is faulty, my kids are loveable and loving, brave, resilient, and simply amazing. So is yours.

June Freaking Cleaver said...

You're right, the "helpful" comments by strangers are anything BUT "helpful". My son is almost 14, I am so tired of explaining things to people.

But it must be done. He has had an awful time in our neighborhood. He has been bullied by the kids. I know the key is education; I wish they did something in schools about accepting kids with different abilities.

It's a long, hot summer here at home - and the boy remains inside.

Club 166 said...

You are more polite than I would be in such circumstances. While I have gotten nasty looks in public, a returned glare from me usually stifles them approaching with unsolicited advice.

Were they to approach, I hope I would be civil enough to get off one polite answer. But I might be tempted to go straight to some of my pre-scripted answers, such as "Yes, my son is autistic, but at least he's not rude", or "Your ignorance appears to be surpassed only by your willingness to show it."

Both of our kids carry an ADHD diagnosis, while our son also carries his autism one.

I admit that I was somewhat in the camp of "ADHD is overdiagnosed" until we actually lived with it every day. I'm still not sure that some kids don't get overdiagnosed with ADHD just for being "high energy" boys. But I now know that ADHD is very real, and that sometimes meds can make a big difference.