Diagnosis Matters: Some words to practitioners for when autism is suspected

Posted By on December 4, 2013

As I think about the issues we’ve encountered with school and two of my kids, I can’t help but remember our family doctor’s responses to Hyperlad. At age 2 and again at age 3, he told us that nothing was wrong. Since then I’ve had other health and educational professionals refuse to use the word autism for him and Monkeygal even while staring its obviousness right in the face. I’ve come to realize that perhaps a generation gap is involved. The thing is, some people think that a label is the worst thing a child can have. They are trying to be kind by denying the label. Or they are trying to be encouraging.

I don’t need encouragement. I need the truth. I don’t need pacification, I need help.

If I had gotten the diagnosis 7 years ago when I first brought up our problems, Hyperlad could have gotten help instead of punishment throughout kindergarten. And having autism on my radar, I probably would have recognized Monkeygal’s condition much earlier, rather than wondering if she was mentally ill. She could have gotten a 504 plan or an IEP in kindergarten, instead of constant suspensions.

I’m not saying any of this, though, to beat a dead horse. I know it’s too late to go back in time and re-do things. But I want to tell those of you who may be wondering about your own children, find out. The earlier the better. And I want to say to doctors and therapists, you don’t do any child any favors by patronizing the parents and offering platitudes. Parents don’t need platitudes. They need truth. Your patient’s parents know him better than you do. And if a parent brings up a real concern (not like “Johnny is already 7 months old and hasn’t taken a single step!” but more like “Johnny is 2 and doesn’t talk, and resists learning to talk,” LISTEN. Ask questions.

Providers, here are some questions you can — and should — ask when your patient’s parent brings up developmental concerns:

  • Does he have any behavioral issues?
  • Does he have a problem with certain foods or textures?
  • What is a typical day like for him? For you?
  • What can he do?
  • What can’t he do?

If you brush Mom off, she is not going to elaborate on Johnny’s need to break wood for the sensory stimulation it provides. She’s not going to tell you that he wasted $250 worth of food staples in the past month. She won’t bother trying to bring up that she cries almost every day because she can’t go to the bathroom without him running into the street half dressed, and the police have threatened to call CPS. She won’t mention any of this because she’s already figured out that you aren’t listening.

If you listen, however, things will go very differently. Even if you don’t yet know what is wrong, she will know that you and she are acting as partners to ensure that Johnny gets the best care possible and has his needs met. If you ask encouraging questions to get her to tell you more, and you learn that Johnny really is doing all right, you can tell her so and put her mind at ease. Or you might get her talking and realize that there is more that she didn’t even think on her own to tell you. She may be too frazzled to formulate a carefully thought out presentation, and you may have to draw it out of her. The important thing is listen. It may make the well-child appointment take an extra 5 minutes, but it could save her years of frustration. It could help Johnny to get what he needs, and not come to self-identify as a bad kid.

You may think that labels harm, and that may have been the truth at one time. It is far less true than when you and I were children, though. Thanks to laws like IDEA, kids with disabilities have inherent rights and there is help available to them. Those rights and help only apply, though, to accurately diagnosed children. Without an accurate diagnosis, parents and school officials and counselors are often left in the dark, wondering what this or that behavior means and how to deal with it. Sometimes worse is that if parents and school officials know what they are dealing with, they are not allowed to deal with it appropriately. Example: when Monkeytot acts out, she gets suspended because her principal has no choice but to follow the district’s discipline matrix. With a diagnosis, any behavior that is directly caused by her autism can be dealt with in a more appropriate and useful way.  Lack of diagnosis doesn’t prevent labels, anyway. It just means the labels will be thought up by kids on the playground. Instead of “autistic” this patient risks being labeled as “dumb” or “psycho” or “weird.” Kids can be cruel. Adults can be, too, for that matter.

Besides, a label or lack of it doesn’t change any reality. If you refuse to label a child with autism, you have done nothing to change his behavior or his symptoms.  Just because you don’t call Johnny a “name” doesn’t make him stop breaking things, or cease to be afraid of strangers, or suddenly become more coordinated. In fact, the opposite: it prevents him from getting the help he needs to learn to control his symptoms, and thus prolongs them.

Another tip for providers: pay special attention to girls’ symptoms. If you don’t know about the differences between how autistic girls and autistic boys present, learn. Girls very often — perhaps more often than not — fly under the radar because they do not fit the stereotypes. A boy who is obsessed with technology fits, and his autism gets caught, while a girl who is obsessed with cats doesn’t fit the stereotype and just gets viewed as an eccentric with a strong love of animals. Girls are also much better at expressing affection and imitating social behaviors. Don’t fall into the hugely erroneous trap of thinking that autistic people don’t connect, and that this girl can’t be autistic because she connects. The fact is (and you should know this if you keep up on your reading) that autistic people do connect, but they often do so differently than neurotypical people, and girls do it far more effectively than boys, either on or off the spectrum.

So, what do you do if a parent has concerns, beyond listening? In most cases, you probably refer. But pay special attention to this point. Referring to a behavioral pediatrician is useless. Don’t do it. Likewise to some other non-psychiatric or non-neurological expert. Autism is a neuro-psychological disorder, and requires a specialist for diagnosis. Refer your patient to a person who does neuro-psychological evaluations for autism. If you don’t have any names, it is a good idea to hunt down specialists whose names and contact information you can keep on hand. At least, if this is not possible, refer them to a psychologist, psychiatrist, or counselor who might have resources you don’t have.  Remember that you probably know far more about this than the parent does. If you don’t, you should. You should be the one who knows where they need to go — and they shouldn’t have to beg. And if it is someone outside your provider group, live with it. Some things are more important than keeping it in-house.

Whatever you do, the one thing you should never do when a parent suggests either autism or symptoms that could be spectrum-related is brush them off. The earlier an autistic child gets diagnosed and treated, the more successful he is likely to be. Please, don’t be the one to stand in the way of this little person’s success.



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