We reported a little while ago that a new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM)—the reference bible for diagnosing mental illness and cognitive problems—has been released. In it, some conditions have been removed, others added, and a few conditions up for inclusion have been rejected, much to the dismay of many.

There are, of course, lots of arguments over what should and should not be in there. But I believe that the DSM has effects outside the world of psychiatry and psychology that mean we should pay less attention to it.

I should start this by saying that I am not a psychologist, psychiatrist, or any other type of psy that may make me qualified to offer a useful opinion on what goes into the DSM. I do, however, have limited insight from the other side: two of my children are on the Autism spectrum. Indeed, I wrote most of this in the waiting room of a clinic while one of my children visited the local psychologist.

I don't want to offer an opinion on what should or should not be in the DSM, but I would like to discuss how inclusion, or lack thereof, has an effect on care. My family's experience is, to some extent, specific to our location, but I think there are some universalities in how people and systems react that can be very helpful and other reactions that are crippling. The role that the DSM plays in governing that reaction is, I have decided, far too large.

It is made worse by the fact that a lot of the stuff in the DSM is a social construct based on what we define as normal. It wasn't so long ago that homosexuality was in the manual; today homosexuality no longer carries the stigma it once did in much of the world. These sorts of shifts are inevitable. Human behavior falls on a spectrum, governed by both genetics and environment, and the DSM is a rather arbitrary document that puts a border between what is normal and acceptable and what is not.

That is not an unhelpful thing to do. The point is not that we define normal and abnormal, but how people, society, and services—both private and public—react to people who are defined as normal and abnormal.

It’s all on the label

The thing that turns a lot of people away from seeking a diagnosis is the label that may become associated with you or your child. Oh, he has Asperger's Autism Spectrum Disorder? I'll just step back a couple of paces in case he explodes, is contagious, or accidentally talks to me. This debilitating refusal to accept difference within our society is a lot better than it used to be, but the stigma of being different is strong. That is how most people perceive the act of labeling: entirely bad.

Labeling, though, can also help. Or, rather, it is not the label, but the knowledge that comes with the label. When my son was diagnosed, we were upset. But after we got over our grief, we read extensively on the topic and began to realize how differently he perceived the world—we will never actually understand it, but even knowing that he perceives the world differently is a good start. We started to understand at an intellectual level why he didn't react the way other kids did. We started to be able to anticipate when he would have problems and approach those situations differently.

In the end, labeling our child was the best thing we could have done, simply because it changed our children from bizarre and (sometimes) badly behaved to different but (mostly) well-behaved. That change in perception only holds, though, if we accept that we were not being great parents: our approach had to change.

There is another aspect to this as well. Once our children were diagnosed, it was possible to get help. We could go to youth psychologists, and the children could attend groups to see that they weren't the only ones; the school could pull in extra help to guide the children through difficult moments.

To put the amount of help we got in perspective: when our oldest child was diagnosed, he got put in a group to learn about his diagnosis. We got a person visiting our home twice a week for six months to help us learn new behavior management strategies, and the school put a couple of hours per week of one-on-one time into preparing the children for high school. And, this help continues. Our son still gets weekly help from his high school to ensure that he is prepared for exams, schedule changes, school trips, and the myriad of other non-routine activities. (I know that in many countries, this sort of help is either out of financial reach or simply not available.)

That is just the formal stuff. There is a second, more positive change that comes with diagnosis: acceptance.

Seeking acceptance

To understand this second response, you need to understand a little about the details of the cognition differences between my children and a neural-typical child. Both of my children fall on the autism spectrum. Under the old system, the oldest was diagnosed with Asperger's and the second with pervasive development disorder not otherwise specified. Now, there are a bunch of tests that are completed to come to a diagnosis, and one of them is an IQ test. You may not realize this, but an IQ test returns two numbers: a pro forma IQ and a verbal IQ. These two numbers rate your ability in two different aspects of cognition.

The verbal IQ is a measure of how well you take in information, how well you can synthesize information from different places and return it as an answer to a question. The pro forma IQ is more about doing things. Can you spot patterns? In a sense, the verbal IQ is about what you know, and the pro forma IQ is about what you can do with what you know. For most people this doesn't matter, because the two tests return about the same number (within a few points), so an average of the two is representative.

However, these two numbers can be quite different. A 15 point difference is considered significant, and my children have a difference of 18 and 40-50 points, respectively. In both cases, though, their verbal IQ is the higher of the two. And that means that these kids appear bright and on top of it in discussion. They can explain accurately how to perform a task.

But, when it comes to performing the task, problems arise. It means that teachers can't simply talk to my children to determine if they can actually do a task. Instead, they need to observe them doing. If you don't know that, then the disparity between the two areas of cognition make it appear that the child is lazy. Even worse, the kid is working their ass off to produce distinctly average results, and nobody understands why they aren't doing it better. After all, they understand the task, right? Indeed, they seem to understand it better than most of their peers... but they still can't do it. The child's frustration is palpable and expresses itself in anger or withdrawal or a range of other behavioral problems.

Teachers and parents, understandably, react poorly to this situation. The bloody child just needs to do some work. I don't think we had a single report from primary school that didn't say something along the lines of "the kid's work tempo and effort are poor. Could do so much better if only they really put some effort into it." As it turns out, that was wrong. My children may be able to do better, but they were achieving what they had through hard work. They are already doing brilliantly to achieve what they are achieving. But, until a label was glued to their forehead, neither I nor the teachers understood that.

With the diagnosis, expectations were reset. Suddenly, we knew that talking the talk was definitely not the same as walking the walk for our kids. It still takes a lot more attention to detail to find out exactly where the two did not match up. Indeed, we are still learning. But the point is, we and the teachers became a lot more understanding of what our children could do and where to push, what to check, and how to anticipate where troubles would arise. It marked a turning point at school for our children.

From this you would conclude that the DSM and the labels were unequivocally good. But, now we get to the downside.

Label unknown

My kids were lucky—using a very special version of the word lucky—enough to have a problem that was in that book. If the tests had come back with something along the lines of "we recognize that the child has social and emotional problems, but s/he does not have a disorder," we would have been on our own. All that help described above? Forget it. Insurance claims for visits to psychologists and social workers? No dice.

A label is very helpful in telling you how to help a child. But the lack of a label does not imply that the child does not need help.

To put it in perspective, at the moment, the eldest child is going through tests for dyslexia. Why? Because he has a lot of trouble spelling and writing. Now, should he be positively diagnosed, he will get extra help, and he will not be graded down as fiercely for spelling errors. In other words, he will be given some leeway to suck at spelling while continuing on with the things he is good at.

But, if he does not get that diagnosis, he still has a problem. He will still suck at spelling, but he will not be given any breaks or any additional support beyond remedial classes. Worse yet, the education system demands that he be good at everything. He has to take two foreign languages, and all three languages have a spelling component. So, while he aces biology, history, and geography, he oscillates between Ds and As for languages (grammar is no problem, generally). What does this mean? Simply put, his poor spelling could force him to repeat a year in every subject or drop a level of high school. If he chooses to go to university, he may be delayed by anything up to 2-3 years. I think that is kind of harsh on a kid whose biggest fault is that he can't spell.

Now, we are not the sort of parents who believe that the only path to a successful future is to ace tests and be in the top level of high school. But it is crushing to think that the system lacks the flexibility to let him excel in what he is good at, while doing as well as he can at the rest. Unfortunately, the only way to get that sort of consideration is to find an acceptable label and to pin it on the child's head for all to see. This is where the DSM does its damage. It is not intentional damage: it was intended as a diagnostic tool, but administrators and politicians have turned it into a way of deciding who gets access to help and who does not.

Label: Requires help

No one goes to get tested for a disorder for the hell of it. You do it because there is a problem. The fact that you end up with "diagnosis unknown" does not change the fact that you need help. It's made worse by the fact that things like Autism and dyslexia fall on a spectrum with no clearly defined borders. Indeed, I think one of the reasons for abandoning Asperger's as a diagnosis was that too many people fell through the cracks by not meeting all the criteria. In practical terms, a single label, Requires Assistance, could be sufficient—if it's provided along with a list of things that require attention and an accompanying list of possible management strategies that have been tried elsewhere.

The failure to get a label also means that no one accepts that you have a problem. I have decided that this is very strange. No one is surprised when a teacher reports that 10 percent of the class is reading at a level two grades lower than expected. No one is surprised when a teacher reports that 10 percent are reading two grades higher. Excelling at math, or sucking at math, no problem. This sort of variation is deemed acceptable. That the student may or may not catch up; it's a pity if they don't, but not everyone is good at everything.

Yet the same variation in social behavior is considered shocking. How dare a five-year-old act like a three-year-old? The presumption of the 13-year-old acting like a 16-year-old! Not only is our acceptance of behavior limited to a narrow range, but we don't even think that it is worth helping anyone who isn't diagnosed with something.

In the past, it was certainly worse. The DSM has definitely made things better by labeling. But I think it is time to move past that now and accept that some people need help, irrespective of diagnosis, and try to provide that help. That means passing the responsibility and the funding down to the level of individual schools, and it means providing actual money to pay for the required support.