Should I get tested for autism? Exploring ideas of "different" versus "disordered"
Updated: Jun 8, 2020
Many of you may have heard of the term “neurodiversity,” which refers to an idea that some brain differences are just that – differences – and should not necessarily be considered “abnormal” or a “disorder.” In this blog post, I explore what this idea means for autism, focusing especially on whether or not you or your child should undergo autism testing.
Autism Spectrum Disorder (ASD) includes an extremely broad range of possible behaviors, but involves two basic core classes of symptoms 1) social impairments, and 2) stereotyped behaviors and restricted interests. In simplified terms, this means that ASD is defined as a person who has trouble knowing and learning how to relate to others and who tends to think in somewhat rigid, restricted ways. By having such a “loose” definition, it is possible to identify many people as having ASD, ranging from a completely non-verbal child who spends 5 hours per day flapping his hand in front of his face to a slightly “awkward” teenager who tends to talk a lot about her favorite videogame. Under current definitions, the difference between these two children is mainly one of severity, with one child needing much more support than the other. However, could it be argued that it is possible to take the definition of ASD too far, where we end up diagnosing children who are just “different’ with a neurodevelopmental disorder?
To address this question, let’s first look briefly at how psychiatric and behavioral disorders are defined. There are many different ways to classify something as a disorder, or as “abnormal.” Abnormal could mean, simply, a deviation from what is typical. I’ll call this the statistical deviance model of abnormal behavior. In other words, one way to define “abnormal” is by noting how often that thing occurs in the population. If it occurs under a certain threshold, say, for example, in <5% of people, we could call that behavior “abnormal.”
Another definition of “disorder” could be based on whether or not the thing causes you problems – that is, the functional impairment model. Certainly there are many medical conditions that are common (occur in way more than 5% of people) but that cause marked functional impairment. The common cold is one example. Allergies are another. In psychiatry, anxiety is extremely common, with everyone experience at least some anxiety at some point in their life, and with as many as 50-70% of people having clinically significant anxiety during their lifespan. So, for these problems, the statistical deviance model is not sufficient for deciding whether or not someone needs help. Just because a problem is common does not mean it isn’t a problem and doesn’t warrant treatment. Thus, the functional impairment model helps fill this void, where we can justify offering treatment to someone because that problem has grown significant enough to get in the way of accomplishing something in their everyday life.
But, then, how much functional impairment is enough to call something a disorder? Just because something is bothering us doesn’t always necessarily mean it’s a disorder. I get pretty bothered by mosquitos and mosquito bites. In fact, I hate them! But, this doesn’t mean I have a mosquito phobia. Now, if I locked myself inside all the time or ran screaming from any place there might be a mosquito, this might qualify me as having a genuine phobia – because in the latter case the fear is causing me functional impairment – it’s getting in the way of me enjoying my life. This is a relatively simple example, but what happens when we think of a more complex example? What about those traits of autism that are defined by someone having trouble getting by in social relationships? At what point does that trouble become a disorder? If someone tells me, “I just never know what to say when I’m talking to people,” does that person have ASD or are they just introverted? At what point does awkwardness become autism? Similarly, we know from research that some people with autism tend to think about things differently than "neurotypical" people. But at what point is divergent thinking just a divergent thinking, and at what point does it turn into autism?
These are questions that are frequently debated even amongst professionals. When I trained graduate and medical students, my students asked me these same questions routinely. Fortunately, there are concrete, well-defined ways to sort out the difference between simple awkwardness, divergent thinking, and autism. One of the best ways is through a test called the Autism Diagnostic Observation Schedule – 2nd edition (ADOS-2), which is a gold-standard instrument for helping clinicians diagnose autism. When combined with a detailed clinical interview, the ADOS-2 helps tremendously in deciding whether a person crosses the threshold from “different” to “having autism.” But, the ADOS-2 isn’t perfect, and, importantly, people change over time. So, it is possible for a young child to be diagnosed with autism through the ADOS-2, but, as they improve over time and respond to intervention, they could, ostensibly, be “cured” of ASD, no longer meeting criteria. I have seen this many times in my career – a person who was tested when young and has a confirmed diagnosis of autism in their past, but who, now, are functioning so well that even I, a trained expert, would not give them the diagnosis based on current observations. So what about these people? Do they still have autism? Does it make sense to treat them like the do still have autism? And for that matter, what does it even mean to treat someone like they do have autism? Should a person with ASD be treated differently?
This brings us to the real crux of this post. What does it mean for a person to carry a diagnosis of ASD, and why does it matter to give someone the diagnosis in the first place? If you believe in the concept of neurodiversity (and I really do), and if you take that concept to its furthest logical conclusion, then you may wonder, “Should the diagnosis of ASD even exist at all? Or does it make more sense just to say that brains are different, and we don’t have to call different brains a disorder?” So, why does the diagnosis of ASD exist?
ASD exists for the same reason any diagnosis exists – 1) to allow clinicians a means to identify people who need help, 2) to group people together in order to study them and understand more about their common affliction (and what causes it), and 3) to allow us to track what treatments/interventions promote optimal healing from that affliction. Let’s look at each of these separately.
ASD identifies people who need or may benefit from extra help
One key reason to test for and diagnose someone with ASD is that the diagnosis allows someone access to the types of help we know are effective for people with ASD. These can include Applied Behavior Analysis (ABA), Social Skills groups, Occupational Therapy, Pharmacotherapy (medications), and other adjunct therapies for ASD. In our world of managed care (insurance companies), in order to receive reimbursement for evaluation and management services, we (clinicians) must assign a covered diagnosis. For therapies like many of the above (especially ABA and some types of OT), autism may be the only covered diagnosis that insurance companies will pay for. Of course, if I wanted, I could rant for a few pages about the questionable ethics of this managed care model of reimbursement, but I won’t do that here, to keep things brief. For now, suffice it to say that the diagnosis of ASD allows a child access to numerous interventions they otherwise could not get without the diagnosis.
This same principle also applies to services offered in school. A diagnosis of ASD allows a child to get extra help (accommodations, individualized education plans, etc.) in school that, again, they could not get without the diagnosis. Again, as much as I wish this weren’t the case, and as I much as I wish we as a society could just provide what our children need without having to label them, the truth of the world we live in is that labels help children get help.
So, in both of the cases above, a person with ASD is treated differently than a person without, and there is nothing inherently wrong with that, just like there is nothing wrong with treating someone differently if they are sick with a sinus infection. Just like we give the sick person antibiotics to help with the infection (thus treating them differently than if they didn’t have an infection), we treat people with genuine ASD differently to help them function better within the expectations and rules of the greater society. And that’s really what treatment for ASD is about – helping people learn how to get by in the world they live. Now, personally, I think that same training could and should be used for anyone that could benefit from it, regardless of whether or not they can be diagnosed with ASD. In other words, shouldn’t anyone who has trouble getting by in the world be offered help to learn how to get by better? I think so, to some extent, but then this idea also opens up arguments about whether the problem is with the individual or with the society. In other words, maybe it would be better to change society’s expectations so we stop seeing anyone who is different as being a “bad” thing that needs to be fixed. I also agree with this argument, but I’m also a realist, and I think that changing society is an ongoing war that will require numerous battles to solve.
I also think the latter argument can be taken too far, with some making assumptions that treating someone differently always means something is “wrong” with them. I disagree. I think, in fact, that treating someone according to their needs is a great sign of respect. It means, “I get you, and I’m willing to change myself so you don’t have to change you.” Anyone who’s ever raised or been around more than one child knows that each child is unique and that all the things you think you know about raising children don’t always work with every child. ASD gives us language to understand a subset of those children, just like other personality words (precocious; inquisitive; impulsive; sensitive; stoic; etc.) give us language to understand other aspects of childhood. If we know someone is sensitive, we may be careful not to use crude jokes (i.e. “Oh my! What is that hideous thing on your neck? Oh, it’s just your face!”) out of respect for their personality. I think ASD is the same. If we know someone has ASD, our differential treatment doesn’t mean something is wrong with them, it only means we respect them enough as an individual to adapt our style to meet their needs.
ASD allows us to group similar children together for research
A vital reason for categorization involves the clinical need to identify similar pathologies so we understand how disease occurs and how to treat it. If we study a lot of people with similar symptoms, we can better understand where those symptoms come from and, consequently, what to do about those symptoms. For example, once upon a time a sketchy, unethical scientist (Andrew Wakefield) created a fraudulent study that linked the MMR vaccine to autism. Although at the time we didn’t know Dr. Wakefield made his study up, his study did prompt decades of further research into this link. After decades of research, we now know, definitively, that Dr. Wakefield was an absolute fraud and that the MMR vaccine (or any other vaccine) does not affect, in any way, someone’s likelihood of getting autism. We studied this by collecting together millions of people with a known diagnosis of ASD and studying them. So, categorical diagnoses help us organize our research.
We have, however, found a lot of other interesting things about people with ASD. For example, when we study their brains, we actually see clear, identifiable ways their brains work differently than people without ASD. Again, whether or not we call this difference a “disorder” is certainly up for debate (as mentioned previously), but what’s important is that without the categorical diagnosis of ASD, we never could have grouped people together whose brains work in similar ways, and thus we wouldn’t be able to understand them as well as we now do.
ASD allows us to study what interventions are successful
Combining both of the above bullet points, ASD allows researchers to explore what specific types of interventions/treatments are most effective for improving ASD symptoms. By grouping people together with similar symptoms, we can then treat those symptoms and track over time how successful our treatments are. This allows us to discredit and discontinue ineffective treatments (e.g. holding or other attachment-related therapies), and it also allows us to document and track treatments that do work, such as ABA, social skills training, occupational therapy, and so on. All of this is important research because it helps us clinicians sort through the mess of theories about things that are believed to help autism and focus instead on the proven interventions. New theories emerge all the time about autism and what should be done to treat it – some of them will ultimately prove to be right, and many will prove to be wrong – but it’s important that this research continue, and that research cannot continue without a way to group patients together and track their progress. For this reason, the existence of ASD as a diagnosis is vital!
So, should I get tested or not?
Taking together all of the above, there are a few important factors you should consider when getting tested for ASD. First, evaluation for ASD is not cheap – out of all the things I do as a psychologist, in fact, I charge most for my ASD evaluations. This is because they take a lot of time and resources to do well. Most ASD evaluations cost at least 4 digits, somewhere between $1000 and $3000, depending on where they are done and how many people are involved in doing them. Insurance covers these evaluations, but there is also an extremely long wait list for such evaluations in most locations. We’re talking around 12 months to even get diagnosed, not to mention another several months waiting for treatment. I hate this as much as anyone. I wish there were no such thing as wait lists and that there were providers all over who could do these evaluations right so people would not have to wait. But that’s just not the way it is. So, one consideration is whether you want to spend your resources on an ASD evaluation, including the financial cost and the time cost (the wait for services).
Key to this decision, I think, is what you want to get from an ASD evaluation. If you’re the parent of a child and want answers that can help your child get needed early intervention, then yes, absolutely get on those wait lists and start the process of getting an evaluation. We know from research that early intervention is key in ASD. The earlier intervention a child gets, the better their long-term outcomes, and many (though not all) children, as I mentioned previously, can be effectively “cured” of ASD through early intervention, where they learn to compensate well enough that they can “get by” in almost any social situation they face in life. However, if you’re a 30-year-old adult, succeeding in life, but are just wondering if you might have ASD because some of your family members or friends have suggested it, then you may decide it is not worth it to you to spend the time and effort in getting a formal evaluation. Instead, you may just consider yourself “atypical” or “neurodiverse.”
The reason I make this latter suggestion is not to say that adults can’t benefit from intervention from ASD – they can. Instead, I mean to say that the diagnosis of ASD has very specific purposes – as mentioned above to move people toward treatment and to research people with similar symptoms. So, if you’re not interested in getting treatment or don’t really need treatment (again, maybe you’re successful, but just with mild quirks here or there), then the only reason to get diagnosed with ASD would be so that you can be followed by researchers. In this case, you may try searching universities who are conducting research studies for which you may be a candidate. In this case, you can get a thorough evaluation giving you the answers you seek, and those evaluations are funded by research monies, decreasing (or even eliminating) your out-of-pocket expenses. Furthermore, you are not plugging a wait-list and potentially causing someone who is interested in or needing treatment from getting the help they need sooner.
Again, I am not suggesting that adults shouldn’t get tested for ASD. My goal is simply to make readers aware that for many people, the time and resources to get tested for ASD may not be necessary, and that there is other terminology – namely, neurodiversity, that could help capture what you’re experiencing without putting you through the clinical process of diagnosing ASD. So, if you're thinking of seeking an ASD evaluation, ask yourself, "Am I really looking for a clinical diagnosis (designed for specific clinical and research purposes) or is it enough for me to just call myself neurodiverse?" In other words, not all of us need a doctor to confirm what we already know about ourselves, especially if we're not trying to get services that require a doctor's order. For the such people, "neurodiverse" may be the "label" you're looking for.
 The statistical deviance and functional impairment models are not all of the ways to define what is abnormal. There are others, including cultural acceptability, biological, and dangerousness models, to name a few. However, full coverage of all of these is beyond the scope of this post. In this case, it is enough to know that there are different ways to define what is abnormal, and depending on the definition, what one person considers abnormal may be considered “fine” by another person, or in another time, or in a different context.
 Once upon a time, a psychiatrist proposed that autism was caused by “refrigerator parenting” – that is, a parent who is cold, aloof, and passively available. As a result, a treatment called “holding therapy” was offered, along with other attachment-related therapies, that focused on helping to promote affection and to correct cold parenting. Unfortunately, though well-intentioned (the research was not fraudulent, it was just wrong), these treatments proved to be dangerous at worst (some kids even died from it) and ineffective at best.