The PTSD Comorbid - researchers just starting to look at it

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“We know that about 70 percent of kids with autism will have a comorbid psychiatric disorder,” says Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada. Depression, anxiety and obsessive-compulsive disorder are all known to be more common among autistic people than in the general population, but PTSD had largely been overlooked. Until a few years ago, only a few studies had delved into the problem, and most suggested that less than 3 percent of autistic people have PTSD, about the same rate as in typical children. If that were true, Kerns points out, PTSD would be one of the only psychiatric conditions that’s no more common in people with autism than in their typical peers.

One potential explanation, Kerns says, is that, like other psychiatric conditions, PTSD simply looks different in people with autism than it does in the general population. “It seems possible to me that it’s not that PTSD is less common but potentially that we’re not measuring it well, or that the way traumatic stress expresses itself in people on the spectrum is different,” Kerns says. “It seemed we were ignoring a huge part of the picture.”

Kerns and a few other researchers are trying to get a better understanding of the interplay between autism and PTSD, which they hope will inform and shape treatment for young people like Gabriel. The more they dig in, the more these researchers are finding that many autistic people might have some form of PTSD. “We’re all just trying to put together the pieces and recognize that it’s an important area that requires further study,” she says. “It’s been a call to arms for the field to start looking at this.”

These researchers have their work cut out for them. In the typical population, PTSD is fairly well defined. According to the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5, psychiatry’s guide to diagnoses, PTSD usually develops after someone sees or experiences a terrifying or life-threatening event. After that initial episode, any reminder of it can trigger panic, extreme startle reflexes and flashbacks. Beyond that, however, there’s a wide variety in the way PTSD manifests: It can lead to hypervigilance and anger; it can cause recurring nightmares and other sleep issues; or it can lead to depression, persistent fear, aggression, irritability or difficulty concentrating and remembering things.

“If you do the math, according to the PTSD criteria in the DSM-5, you can have 636,000 different combinations of symptoms that that describe PTSD,” says Danny Horesh, head of the Trauma and Stress Research Lab at Bar-Ilan University in Ramat Gan, Israel. Given all the traits in people with autism that may overlay these permutations, “you have a lot of reason to think that their version of PTSD might be very different,” he says.

Preliminary studies are just beginning to confirm that idea and to show that what constitutes trauma may be different in people on the spectrum. Together with Ofer Golan, an autism expert at Bar-Ilan, and others, Horesh has begun investigating where PTSD and autism converge. The group has recruited upwards of 130 participants, including students and some people diagnosed with autism, and tried to determine where they fall on the spectrum and whether they have any traditional signs of PTSD.

Abuse, sexual assault, violence, natural disasters and wartime combat are all common causes of PTSD in the general population. Among autistic people, though, less extreme experiences — fire alarms, paperwork, the loss of a family pet, even a stranger’s offhand comment — can also be destabilizing. They can also be traumatized by others’ behavior toward them.

“We know from the literature that individuals with autism are much more exposed to bullying, ostracizing, teasing, etc.,” Golan says. “And when you look in the clinic, you can see that they’re very sensitive to these kinds of events.” Among autistic students, Golan and Horesh have found, social incidents, such as ostracizing, predict PTSD more strongly than violent ones, such as war, terror or abuse, which are not uncommon in Israel. Among typical students, though, the researchers see the opposite tendency.

Given these differences, and the communication challenges autistic people often have, their PTSD can be particularly difficult to recognize and resolve.

“It’s so absurd that there are such excellent treatments for autism today, and such excellent treatments for PTSD today, and so much research on these interventions. But no one to date has connected both,” Horesh says. “How do you treat PTSD in people with autism? No one really knows.”

It can be difficult to treat autism and PTSD separately in people who have both conditions, because the boundaries between the two are often so blurry. And that may, ironically, be the key treating them. In other conditions that overlap with PTSD, as well as those that overlap with autism, researchers have found that it is most effective to develop therapies when they look at both conditions simultaneously.

The researchers are uncovering some important overlaps between autism and PTSD in their studies. In a group of 103 college students, for instance, they found that students who have more autistic traits also have more signs of PTSD, such as avoiding sources of trauma and negative changes in mood. “The highest-risk group of one was also the highest risk group in the other,” Horesh says.

The researchers also found some unexpected trends: The association between PTSD symptoms and autism traits is, for as yet unknown reasons, stronger in men than in women, even though typical women are two to three times more likely to develop PTSD than are typical men; that gender bias might eventually inform treatments. And people with more autistic traits display a specific form of PTSD, one characterized by hyperarousal: They may be more easily startled, more likely to have insomnia, predisposed to anger and anxiety, or have greater difficulty concentrating than is seen in other forms of PTSD. Recognizing this subtype could be particularly helpful for spotting and preventing it, and for developing treatments, Horesh says, especially because the same traits might otherwise be mistakenly attributed to autism and overlooked. “We know that each PTSD has a different color, a different presence in the clinic,” he says.

Given the low reported rates of PTSD in people with autism, Kerns questions whether the DSM-5’s criteria for PTSD are sensitive enough to detect its signs in this population and wonders whether clinicians need to be on the lookout for a different subset of both causes and features.

Kerns and her colleagues are interviewing autistic adults and children — as well as guardians of some less verbal autistic people — to find out more about what, for them, constitutes trauma. So far, they’ve interviewed 15 adults and 15 caregivers. What she’s learned, she says, is that it’s necessary to check any assumptions at the door. “You want to be cautious about applying neurotypical definitions — you could miss a lot,” she says.

In speaking with participants about causes of trauma, she has heard “everything from sexual abuse, emotional abuse and horrendous bullying, to much broader concepts, like what it’s like to go around your whole life in a world where you have 50 percent less input than everyone else because you have social deficits. Or feeling constantly overwhelmed by sensory experience — feeling marginalized in our society because you’re somebody with differences.” In other words, she says, “the experience of having autism and the trauma associated with that.”

How PTSD manifests in autistic people can also be unexpected, and can exacerbate autistic traits, such as regression of skills or communication, as well as stereotyped behaviors and speech. Based on these observations, Kerns and her collaborators plan to create autism-specific trauma assessments to test on a larger scale.

This line of research is still in its earliest days: It is still difficult to tease apart correlation from causation. In other words, does autism predispose someone to post-traumatic stress, or are people with autism more vulnerable to experiencing traumatic events? Or both? Scientists simply don’t know the answers yet — although some studies do indicate that autistic children are more reactive to stressful events and, because they lack the coping skills that help them calm down, perhaps predisposed to PTSD.

Even when trauma is known and documented, however, treating someone on the spectrum is easier said than done. When children are nonverbal or simply view the world differently, practitioners can struggle to find the most effective way to help them work through their experiences.

One of the most effective treatments for PTSD, at least in children and adolescents, is trauma-focused cognitive behavioral therapy. This treatment takes a multi-pronged approach that involves both children and their parents or guardians in talk therapy and education: All of them learn what trauma is, how to navigate potentially tricky situations, and about communication tools and calming techniques for moments of distress. Clinicians prompt the affected children to talk through the traumatic experience in order to help them take control of the narrative, reframe it and make it less threatening. But in children with autism, who may be less verbal than typical children or simply less inclined to delve into the memories over and over again, such an approach can prove especially challenging.

“There are a number of core features of autism that make usual psychotherapies somewhat more complicated,” Hoover says. Typical children tend to be reluctant to talk about their traumatic experiences, but they generally give in because they know it’s good for them, he says. “Children on the spectrum are often less willing — because they’re exceedingly anxious, and because they’re not able to see the forest for the trees.” He notes that autistic children can be so keyed into the present, and so tied to routine, that they have a difficult time participating in treatment that intensifies their anxiety in the moment, even when they know it might help in the long run.

I have long had the "hyperalert", insomnia and other symptoms cited for PTSD. I have had these symptoms since I was a child and PTSD didn't exist. I was always trying to explain it (to myself) as related to abuse as a child, etc., but this makes sense to me. I appreciate reading about it.

I don't understand why something is characterized as a mental illness or disorder when it is a reaction that occurs in response to something traumatic. If one is abused, one wants to keep a sharp eye out for people and or situations in which the abuse might occur. Makes sense to me.

Makes you wonder if some of these researchers have been paying visits to past threads here, trawling for and finding past comments on this probable connection from members like me who have been pointing out the obvious for ages - that a minority group which experiences greater degrees of violence from a normative population - violence on physical, emotional, psychological and sexual levels - will in all probability show very high rates of PTSD.

I don't think PTSD is so much a "co-morbid" condition (basically meaning it arises innately, from being on the spectrum) to AS. I think it is a response to the shabby treatment, exploitation and abuse that has been normalised by the normative population as "the way we can treat people different from us, because that means that they are worth less than us".

Researchers rarely examine their own cultural assumptions, or the impacts of their socialisation in a normative group, as variables that impact on their research assumptions and theorising. It's something the AS community needs to become acutely attuned to, so that they can give actual meaning to "nothing about us without us" (however that won't happen in my lifetime, sadly, in anything but token ways).

Just as I believe there needs to be suicide helplines specifically designed for the needs of AS people, so I think there is a huge need for psychotherapy for PTSD specifically designed by, for and with AS people. We are treated as honorary NTs when it suits the needs, whims and convenience of NT service providers, and that must change.

AS people presenting with depression and burnout are treated as NTs would be when presenting with the same issues.

The lack of perception and sensitivity to AS service delivery which is client-centred rather than "one NT size fits all" is inexcusable at this stage of the game. There is no excuse for it because it has been caused by the deliberate exclusion of AS people from input into research areas and policy decisions which impact AS people the most. It's time for AS people to be sitting at the table, not looking for crumbs of research theory and assumptions dropped by NT careerists.

I don't understand why something is characterized as a mental illness or disorder when it is a reaction that occurs in response to something traumatic.

There have been suggestions that it should be renamed Post Traumatic Stress Injury (rather than Disorder), but this doesn't seem to have caught on.

Makes you wonder if some of these researchers have been paying visits to past threads here, trawling for and finding past comments on this probable connection from members like me who have been pointing out the obvious for ages - that a minority group which experiences greater degrees of violence from a normative population - violence on physical, emotional, psychological and sexual levels - will in all probability show very high rates of PTSD.

I don't think PTSD is so much a "co-morbid" condition (basically meaning it arises innately, from being on the spectrum) to AS. I think it is a response to the shabby treatment, exploitation and abuse that has been normalised by the normative population as "the way we can treat people different from us, because that means that they are worth less than us".

Researchers rarely examine their own cultural assumptions, or the impacts of their socialisation in a normative group, as variables that impact on their research assumptions and theorising. It's something the AS community needs to become acutely attuned to, so that they can give actual meaning to "nothing about us without us" (however that won't happen in my lifetime, sadly, in anything but token ways).

Just as I believe there needs to be suicide helplines specifically designed for the needs of AS people, so I think there is a huge need for psychotherapy for PTSD specifically designed by, for and with AS people. We are treated as honorary NTs when it suits the needs, whims and convenience of NT service providers, and that must change.

AS people presenting with depression and burnout are treated as NTs would be when presenting with the same issues.

The lack of perception and sensitivity to AS service delivery which is client-centred rather than "one NT size fits all" is inexcusable at this stage of the game. There is no excuse for it because it has been caused by the deliberate exclusion of AS people from input into research areas and policy decisions which impact AS people the most. It's time for AS people to be sitting at the table, not looking for crumbs of research theory and assumptions dropped by NT careerists.