When it comes to Post Traumatic Stress Disorder, I have a lot of knowledge and experience. Having lived with Complex PTSD most of my life, I can recognize trauma responses pretty easily. First comes the racing heart, then the change in breathing; limbs getting cold as blood rushes to the core, sound and light become more pronounced, hypervigilance activates, and since my personal response is to flee, I self-isolate. I stop answering my phone or reading emails. I stop taking in what folks tell me—as in I can physically hear them but don’t know what they’ve said—and if I stay triggered to the point of shutting down, I stop being able to process food and the sensory overload kicks in. Simple things like touch or sound become intolerable. And while these are my responses, I’ve found that many with PTSD have similar reactions. When I see someone presenting any number of trauma responses, I move into a place of being direct, calm, and mindful. Because I’ve been dealing with trauma responses so long, I felt pretty confident that I’d recognize these responses in everyone. Yet I couldn’t have been more wrong.

For much of my youngest child’s life, I knew he was a bit different. He struggled in school, around larger crowds, and the lights in his classrooms distracted him so much that by midday, he’d have a headache and want to come home. I spoke with teachers, counselors, doctors…and after several years of back and forth conversation, we were told that he was on the spectrum. When we had the data we needed, everything changed. The school moved him to areas with more natural sunlight, they gave him tools that helped to keep him from getting overstimulated, and a lot of it worked. After three years, however, there was still something wrong.

His teachers often spoke about his behavior, and they would get angry, claiming he was disruptive and wouldn’t listen. They described things he was doing and because I’d not seen these behaviors, it was difficult for me to know what to do about them. The things they described didn’t sound like my son. Then one day, my son got off the bus, came into the house, and fell to his knees. He couldn’t breathe. He was shaking and sobbing so much that he couldn’t talk. I had no idea what was going on. His responses seemed to be trauma related, not autism related, so I began modeling long, slow breaths, and I asked him if he would breathe with me. He did, and when he finally calmed down, he told me what had happened.

I realized at that moment that I’d missed something major: My son also had PTSD. We didn’t know it, but he’d been dealing with bullying and gaslighting for many years, and the deeper I dug into his behaviors at school, the more I saw that they might be trauma related. Despite this new data, the school staff were reluctant to attribute his behavior to anything but being on the spectrum. They even ignored the feedback from a counselor, which acknowledged that some of his behaviors were PTSD related. My husband and I went to great lengths to ensure that our son got all the care he needed, including that for trauma, and it made a night and day difference. Now, he’s doing great and actually enjoys school. He traded in his IEP in favor of accommodations, his grades are better than they’ve ever been, and I have to wonder, how different would things have been if we’d realized sooner that he had a comorbid diagnosis?

I have a lot of friends on the spectrum too, and I’ve since learned that oftentimes when they are evaluated for PTSD, they are told they don’t have it. Yet many have been through violence, sexual abuse, neglect, bullying, and have been forced to endure things that push them far into sensory overload; all things that would cause many of us to develop PTSD. I began seeing a difference in PTSD diagnosis rates between my friends with autism and my friends not on the spectrum. I knew that both diagnoses could come with sensory issues, but aside from that, I wasn’t sure why there was such a drastic difference in diagnosis rates.

I’m not alone in my confusion either.

Dr. Connor Kerns, a scientist and clinical psychologist with the University of British Columbia, is doing research to determine if the lack of comorbid diagnoses might be due to similarities of symptoms as well as our lack of diagnostic tools to account for their overlap. Both autism and PTSD affect the amygdala, the prefrontal cortex, and the dysregulation of LHPA (limbic–hypothalamic–pituitary–adrenal). There is also the possibility of communication barriers and the difficulty in explaining when something traumatic has occurred for those on the spectrum, or issues with the lack of clear comorbid qualifiers in the DSM-5. There are many areas to consider when trying to determine the issue of proper diagnosis. Yet even with a proper diagnosis, freelance writer Lauren Gravitz points out that treating the comorbid diagnoses can be challenging due to the blurriness of the overlapping symptoms. She also points out that treating both together, might be the key to success.

In a survey completed by Wolters Kluwer on Level 1 Trauma centers in the U.S., they found that only 25% of adult centers and 36% of pediatric centers had the ability to diagnose comorbidity amongst those living with autism and PTSD. This is a massive problem and affects a highly vulnerable population. We need more research on these comorbid diagnoses and better methods to diagnosis properly. Without more data, those living with autism and PTSD will not receive the treatments that will do the most good for them. Thankfully, Dr. Kerns is doing some of this much-needed research. So it Dr. Horesh and his team at Bar-Ilan University in Israel. The more research we have, the better we can care for those living with comorbid autism and PTSD.

My son’s life has changed since receiving the proper diagnoses and care. He talks about going to college now and working for Disney, Dreamworks, or Pixar. He learned to focus his energy on drawing and animating because he was given a proper diagnosis, and therefore, tools for managing his needs.

March is Developmental Disabilities Awareness Month. Please share, comment, and let others know the wonderful work being done to raise awareness about the inclusion of those living with developmental disabilities.

Sienna Saint-Cyr is an author, editor, publisher, social worker, and social justice advocate.

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