Living with PTSD on the Autism Spectrum authors Lisa Morgan and Mary Donahue discuss their upcoming book and how it can be a helpful resource to those who need advice and support
Can you briefly outline your backgrounds?
I grew up autistic in the 60’s and 70’s when autism was not on anyone’s radar. Labels such as snobbish, quiet, weird, lazy, finicky, and clumsy were judgements, not symptoms. I never fit in with my peers and was always on the fringes, watching the other kids live, while I waited for something to make sense so I could start living too. I experienced rejection, bullying, relational trauma, and even physical abuse many times as I was growing up.
As an adult, life has continued to be confusing, the bullying is just different – not gone, and relationships are even more complicated. My life abruptly and completely changed on June 24th at about 6pm est. I know the exact moment life as I knew it ended and my new normal began. It was like losing a familiar, favorite, comfortable sweater and being given a strange, stiff, scratchy one to wear instead. It was also the moment I started my journey with PTSD, although I didn’t know it until months later. Since then I have used my lived experience to advocate for suicide prevention and crisis support for the autism community.
I grew up in northern New England, which is important to my story. I was not initially aware of many different kinds of people in the world but was fortunate enough to land a job overseas and spent some years discovering an awful lot about all different kinds of people. While I had expected different cultures from different countries, I was most struck by the differences amongst people of my own country. When I returned to the U.S., I went to college and grad school, studying psychology but majoring in people. What unfolded for me was a speciality in various betrayals and traumas. This led naturally toward working with autism and other underserved populations, which dovetailed with my interest in other cultures.
I am continually awed by the kinds of events that people can live through, and at the strength they display in just getting up in the morning sometimes. Mostly, it’s an honor to be allowed the sort of trust it takes to enter into the private, often scary, humiliating world of many traumas. To be able to combine that with my love of learning and writing is satisfying. Lisa and I both took a big risk in writing this book; our hopes about where it leads for the autistic community are much greater. We’re appreciative to JKP for the chance to introduce this important topic.
What was the initial inspiration behind Living with PTSD on the Autism Spectrum?
I have PTSD, and there was nothing written or researched about autism and PTSD. I needed answers, and I knew there were many other autistic people who needed answers as well. Also, I knew I wouldn’t be able to write the book on my own. There was too much I didn’t understand outside of my own lived experience. I needed someone to help me write the book who understood autism and PTSD, so I asked MaryD if she’d be interested in writing a book with me. I knew we could figure it out together – and we did. Writing the book actually helped my journey towards health and healing, taught me more than I could have learned on my own, and is now available to help other autistic people.
When I met Lisa, I recognized PTSD immediately as I deal with it regularly. I had only minor experience with autism but a lot of book knowledge. Initially, I tried to find someone with more experience with these co-occurring issues but couldn’t. A search of the literature revealed an absence of information. Lisa and I discussed her goals, the paucity of my knowledge, and our mutual desire to learn. We decided to become a team, using her autism and my neurotypical(ish) experiences to identify similarities and differences between the two populations, how mainstream interventions may or may not work in this case, and what sorts of things would prove useful to her. Fortunately, our personalities mesh and we’ve come up with a good project that, hopefully, will start a movement toward identifying and helping other autistic people who have developed PTSD.
How can parents and teachers benefit from reading Living with PTSD on the Autism Spectrum?
The book begins with chapters explaining the history and symptoms of both autism and PTSD individually, then shows how we came about identifying how the two sets of symptoms smash up against each other.
There are many true experiences peppered throughout that give excellent descriptions about what certain points look like in real life. It’s written in easily accessible language and explains a number of ways that autistic people can be traumatized. Of equal importance, it gives first responders and other helpers tips for helping an autistic person in crisis.
Lastly, the book starts a discussion about possible therapeutic approaches that may prove more appropriate for autistic clients. There are still miracles out there, and if mainstream individuals can recognize their power, open their minds to learning, and approach others with curiosity, the quality of life for autistic people is bound to improve.
Current times are particularly stressful and overwhelming for neurologically diverse individuals. What advice do you have for them to begin to process and work through their feelings?
The changes and uncertainty of life at the beginning of the pandemic were extremely difficult for autistic people. Now, months later, with the changes processed, new routines adopted, and time to adjust, there are lots of positives: there are rules that everyone is following. Social distance is a welcome change to people needing personal space; there are signs about where to stand and which way to walk down aisles; there’s less small talk to manage when buying a gallon of milk and some bananas.
On the other hand, many autistic people have trouble identifying emotions, let alone communicating them. That’s where the need for this book comes into play because it clarifies important parts of autism culture and how current treatment modalities can hurt more than help. Indeed, current times are trying. Remote appointments are often more difficult for neuro-divergent populations. Schedules and routines, which are generally very important to autistic people, are being interrupted. Plans are advertised, changed, then abandoned or changed again. The wearing of face masks interrupts all sorts of coping strategies and requires more energy for sensory processing.
There are some ways that neuro-diverse people can try to manage their added stress. For example, within their changed circumstances, some may find it necessary to re-work calming skills and may need to ask for help with that. Maintaining or recreating routines would also help to provide better focus and less anxiety. Having a specific time or place in which to express their concerns can give someone something to focus on, as might having a choice board. Staying in touch with friends or helpful social groups through social media may take some changes regarding lowering stimuli…putting only the talking face on Zoom, for example, or making the background as plain as possible.
This book is unique in that it is written from the perspectives of both clinical and lived experience viewpoints, as well as two different neurotypes. What was it like writing Living with PTSD on the Autism Spectrum together?
First, and foremost I appreciated presumed competence from my co-author. She believed in me more than I did and that kept me going when the writing got difficult. We work well together because we respect each other’s differences. It was important that we gave each other space to take breaks, to write individually together, and to struggle through the hard stuff. We trusted each other to know our own parts, but at the same time – to be open to suggestions and new ideas. Our brains work differently. Mine is linear and MaryD’s is curvilinear. At times that was a challenge – but we adjusted to make room for each other’s way of thinking. The writing process became an example of what can result from not only accepting each other’s differences, but working with each other’s strengths. We should probably write a book about that.
What are your future plans? Any thoughts about working together again?
For certain. The more we got to talking, the more Lisa and I realized we might have something pretty special here as each of us seems to be a good translator for the other in terms of our respective cognitive cultures. We are working on a podcast about the book; the podcast will go more in-depth about each chapter. In doing that, we came up with a really creative podcast idea to discuss various perception differences.
Hopefully, the reception of this book will ignite a movement toward recognizing the amazing talent autistic people can bring to the table, often with very little effort. For example, one man whose special interest is computer code can’t wear shoes – it’s a sensory thing – so his company changed its footwear policy (as well as a few other traditional but perhaps unnecessary office policies) and this man has ended up saving his company considerable time and money. Indeed, autistic-friend environments would find that autistic people generally have very valuable skills in terms of having excellent memories, attention to detail, and unique perspectives; to name but a few of the vast talents the people of that community possess.
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