It’s Not All Autism

The world’s radically shifting statistics on autism, plus Jenny McCarthy’s exploding bandwagon, have shaken parents everywhere. Especially those dealing with late-bloomers, learning disabled kids, or otherwise special needs children.

NOT EVERYTHING YOU SEE IS AUTISM!

First of all, I think it is a misnomer to label high-functioning autism children as such. I understand, for scientific reasons, why experts do that. But for the rest of the world, I think it is harmful. If not because most parents (especially dads) are reluctant to think of their behaviorally or socially struggling children as autistic. For them, the word conjures up “Rainman” images of the classically autistic who show deeply impaired abilities to think (metacognate), behave, or relate in the social world. For children with slight (yet signficant) impairments in these areas who will eventually lead “normal” or independent lives, I think it is confusing to give them the same label. I am glad that the face and acceptance level of autistic individuals is changing partly because of this, but I am not sure whether it is the right thing to do, ultimately. There is a significant difference between those individuals who will need institutionalization or assisted living their entire lives, and those who will just need to self-adapt at work, home, and play.

To be sure, high-functioning autism shares a lot in common with classic autism, mainly concerning the types of symptoms (although different in degree). Both types of autism may include relational, emotional, communicative, and behavioral impairment that stem from an inability to learn or engage the social world. Both types may be classified by language delays, social skill trouble, and self-stimulating movements or routines. But the problem is that a lot of other special needs diagnoses share symptoms with high-functioning autism. Many children with language delays, cognitive delays, social or emotional sensitivity problems, attention problems, or sensory issues can have symptoms which look very much like the diagnostic criteria for autism. It can take an expert and some time to know the difference.

What do you do with a child who:

• walks around on his toes, spins wheels, and can’t have a conversation with you?
• doesn’t look at you while talking, repeats scripts a lot, plays with his toys the same ways over and over again?
• can do anything with shapes, letters, or numbers but can’t tell you his name when asked?
• Is slow to ask for what he needs, doesn’t point, doesn’t call for help, and can spend two hours straight doing puzzles?
• Doesn’t notice her self-care needs, won’t toilet, screams when she is hugged, has phobias that don’t make sense to people?
• lacks empathy, can’t read people’s facial expressions, doesn’t seem to understand that people can see or hear him when he misbehaves, talks kind of monotone?
• Memorizes videos word for word, doesn’t put two novel words together, can’t tell the difference between similar things (like breakfast, lunch, dinner), and doesn’t respond to stories or explanations?
• Doesn’t respond to group directions, can’t tell when you’re not speaking to her, chatters all day to nobody, and sleeps only five hours at night?
• Bangs head, walks relentlessly in circles, holds things up to the light, is fascinated by colors, is a picky eater, and oversensitive to smells/chewing?
• Has no imagination or pretend skills, is painfully shy, clings to a security item, doesn’t use gestures, and prefers to be by herself most of the time?

Do you call all these children autistic? They certainly all have symptoms. High-functioning? What about Aspergers?

The fact is that I have parented kids with almost all these problems (even entire clusters of them), and I am happy to say that none of them are autistic! You might wonder, but it’s true. The fact is that symptoms overlap. Some are symptoms of language problems, cognitive delays, or sensory disorder. Some are just weird manifestations of personality! There are perfectly normal kids who have out-of-proportion responses to things like rain, toilets, cereal, or the feel of your carpet. As long as their problems are isolated, or have no real connection to one another, you may just be dealing with a phase or late bloomer. If there are connections to their problems, you may be dealing with delays or hyper/hypo sensitivities. Or you could be dealing with dyslexia, learning disorders, or emotional disorders. You can’t just jump on the autism band-wagon. You need to do more research than that.

Not that you shouldn’t ask if you are concerned. Better to be over- than under-concerned. But realize that you know your child better than an examiner and if you walk in a clinic with a list of textbook symptoms like above, you are probably going to get a diagnosis—maybe one that you don’t want or, worse, isn’t actually the child’s problem. In the young years, this is sometimes ok because special education starts off similarly even for different problems. Giving your three year old a year in a special preschool environment can help weed out what is/isn’t the problem. However, you have to realize that diagnoses can be scary and self-fulfilling. Or they can be confusing, say if your doctor gives your child a diagnosis of PDD-NOS (pervasive developmental disorder not otherwise specified) which is about as helpful as a spoon for spaghetti. And with the autism scare of the century, you need to know what you’re getting into. You don’t want, for example, to axe all vaccines because you think your child has autism and then have them die of hepatitis when all they had was an expressive language problem! These are the types of scenarios that McCarthy-scorners are worried about.

Also keep in mind that symptoms listed in a book can be hard to understand when applied to real life. It is easy to overdiagnose, but it is possible to underdiagnose too. A mother, in particular, might not think [x] is a problem because she has no problem with her child. But in a new environment, the child has a real problem. Or the opposite can happen. Because a child might be testing his mother a lot and acting hyperactive, she thinks he has a real problem. But as soon as he gets in a structured environment like school, he’s just fine. Some mothers overestimate what they read and see disorder written all over their child; other mothers underestimate and see no way their child could have a problem like the medical/technical stuff being described. You want to be balanced.

Keep in mind, too, that symptoms in a book concerning behavior (like echolalia or word usage) are hard to assess because you don’t know what’s normal and what’s not. In one context, not reversing pronouns might be a red flag. In another context, it’s totally normal. Especially if this is your first child, or they are slow in language development, you tend to find the descriptions in diagnostic books overly relevant to your child. In this case I might call the local preschool and get permission to observe a special needs classroom and see what children with the diagnoses really look like. Sometimes this simple act is all it takes to say, “Nope, my child definitely doesn’t need this.” or “Yes, my child definitely has a problem.” Not that you are a doctor, but as I said, you definitely are most familiar with your child and so you can probably sense these things as you get more exposure. Or get a friend whom you trust to observe too. Don’t simply pick up a magazine article or Barnes & Noble book and let it confirm your fears.

So I guess my conclusion is: use your gut, but don’t panic. If something is really bothering you about your child’s development, take it seriously. There might be a problem. And if your gut is REALLY bothering you, like keeping you up nights and causing marital strife etc, there probably is a problem. But it may not be autism. Not even high-functioning.