I was diagnosed with cerebral palsy at age two. A year or so later, I had been in preschool for a while and the teachers had noticed behavior they felt was unusual. I fixated on certain things, like the story of Cinderella. I sing-songed answers when asked questions or spoken to. I could communicate well, but not always the way people expected or wanted. After observing these and other behaviors, someone recommended my parents have me tested for classical autism.
It turns out I did not have classical autism, although the testing experts did tell my parents about communication differences they felt I might have. Mostly though, they said what I was doing could be chalked up to a little kid being a little kid. Looking back now, my mother says, “Naturally though, they thought [these behaviors] were disability-related” because I already carried a CP diagnosis.
And that makes me think. Once a child is diagnosed with a disability, why does everything suddenly become a disability issue? Your five-year-old who happens to have CP says “seed” and “runned” instead of “saw” and “ran?” DISABILITY ISSUE! Your twelve-year-old with a spina bifida diagnosis tells you her head and stomach hurt? DISABILITY ISSUE! Your sixteen-year-old with ADHD is ticked off because a coworker treats him like a three-year-old? You get it. But, is it always a disability issue, and does it have to be?
Advocate Kathie Snow talks about this in her excellent article “Disability Issue or Human Being Issue?” In it, she mostly addresses the concept of “compliance,” and how PWDs are expected to comply without question all the time, even when they shouldn’t. Kathie rightly points out that when a TAB person protests something, says “no,” gets angry, whatever, it’s because they’re human. But when a PWD does the same thing, it’s considered noncompliance and directly tied to disability. Hypocritical much?
I wholeheartedly agree that we need to stop focusing on disability issues and start saying, “When is this a human being issue?” But I’d like to piggyback off Kathie and point out, this goes way beyond behavioral compliance. For instance, when your twelve-year-old with spina bifida says, “I don’t want to go to therapy. I have a stomachache,” don’t assume she’s making something up because she’s disabled and wants to get out of doing work. Don’t assume that stomachache has to do only with her muscles and existing medical issues. She might be entering menarche and having cramps. She might have eaten something her body didn’t like. Heck, she might have appendicitis.
In the same vein, don’t assume that natural developmental progress is always tied to disability. I’m not a doctor or child psychologist, but as far as I know, it’s not unusual for a five-year-old to mix up tenses. That often has nothing to do with a disability diagnosis. Now, if the kid gets to about seven or eight and is still doing it, there’s a problem. But again, that might not be tied to the original disability diagnosis, nor does it mean he or she needs yet another diagnosis.
So, When is it a Disability Issue–or Not?
I will admit, this one’s tricky. Sometimes it’s better to go ahead and get the testing, ask the doctor or therapist, whatever you need to do, because it’s hard to tell. That was the case for my parents and preschool teachers because what I described can be symptoms of classical autism. They aren’t always, but sometimes it’s difficult to gauge what’s typical vs. what will lead to a disability diagnosis. So, one thing to keep in mind is: if your child doesn’t have a diagnosis, but is exhibiting enough symptoms that you think one could exist, go ahead and ask. Seek help. Do your research. If your child isn’t diagnosed, great. If he or she is, still great. Your kid didn’t change–now you simply know he or she will need extra help to reach the best quality of life.
But let’s say your kid, or teen, or adult child, already has a diagnosis. When do you know something is or isn’t a disability issue? Well again, the answers will vary. Disabilities are extremely situational. They are, shall we say, capricious creatures. But there are a few things I think you can watch for and ask yourself when determining the answer.
-Ask yourself: “What’s going on around my child?” When your eleven-year-old son, who is deaf, came home with a bloody nose, did he tell you some jerk kid was mocking his voice or sign language? Does his school have a known bullying problem? Are students with disabilities seen as more alike, or different? Does your child’s teacher report he has many friends? Often the environment is a much bigger problem than the disability. If you don’t know the environment, ask to observe; if you get pushback, go to the principal, the head coach, the superintendent, wherever you need to go, to get answers.
-Ask yourself, “If my child didn’t have a disability, how would I react to this?” Your eight-year-old daughter comes home with a C on a math test. She’s been diagnosed with dyslexia, so a part of you panics–does she have dyscalculia, too? But up to now, she hasn’t shown recognizable symptoms. Her teacher hasn’t said anything negative about her grades. In this case, react as you would if she wasn’t diagnosed. Say, “Did you do your best? How can I help you do better? Would you like the two of us to talk to your teacher together?”
-Ask yourself, “Is my child basically on par with other kids their age?” Again, sometimes hard to tell if you’re not trained in that kind of thing. And sometimes, your pediatrician will say, “There’s nothing to worry about” when there actually is. Sometimes you have to listen to your gut. If the doc has assured you your child will catch up, but it’s been months or years and that’s not happening, your parental alarm should be dinging.
But remember, the doc is right when he or she says kids develop at different rates. Again, this often comes down to observation. Your two-year-old might speak less than the others at playgroup, but is he still talking? Could she be quiet because the other kids are loud, and not letting her get a word in edgewise? Your middle-schooler might struggle socially, but is that only because of an autism diagnosis? Maybe not. It could be because his friend group is evolving, and he’s trying to figure out where he fits in. It could be because her friends are showing an interest in boys, but she doesn’t feel ready for that. (I myself had dreams of romance as a middle-schooler, but they were confined to books. Most boys my age acted like they still thought girls had cooties).
-Is the issue at hand coming up only in a disability context? That is, does your kindergartner, diagnosed with CP, only have trouble gripping and holding objects of certain sizes? Does your visually impaired second grader struggle to see or write only certain letters and numbers? Does your high-schooler only report headaches on days she is expected to go to “job sites?” (And on that last one: if yes, then it might be time to rethink the whole “job site” thing).
-How does this issue affect everyday life for you and your child? If your four-year-old is fixated on Cinderella, she’s probably being a little girl. If, with age-appropriate prompting she can talk about something else, she’s probably fine. But if she always brings the conversation back to Cinderella, she’s losing friends over it, or she’s not developing other interests–red flag. If your child with ADHD lashes out because a coworker is making fun of him, that’s one thing. But if the aggression turns violent, or if it happens with other people who haven’t said anything to him, it might be ADHD-related.
-Does it make sense to solve this issue in a “traditional disability world” way? This often comes up with undiagnosed kids but can with diagnosed ones, too. In other words, yes, your child uses a wheelchair, and is having trouble in PE. But her problems may not be wheelchair-related, and if they are, the solution is probably not to exempt her or have her do age-inappropriate PE tasks. After all, you wouldn’t want or expect that for a TAB child, or for yourself. Or yes, your child’s English grades have slipped lately. Should he be placed in special ed, as a PWD might automatically be? No, probably not. It’s probably time for a parent-teacher conference, and time to think about what your child needs from English class that he’s not getting.
In conclusion yes, there are disability issues out there. It comes with the territory, but assuming everything a PWD needs is tied to their diagnosis is dangerous. It pigeonholes them and keeps you, as well as everyone else, from learning. So let’s cancel our subscription to “disability issues” and start saying, “Even if this is disability-related, it is first and foremost a *person* issue. And as people ourselves, we can help solve it.”