By Chloe Rothschild
Unfortunately, traumatic events happen everyday. Whether these events result from misunderstandings, happen out of ignorance or are intentional, there is one thing in common with all traumatic situations: the individual traumatized suffers and struggles. Imagine feeling scared, hurt, worried, anxious and upset. Now, imagine not being able to speak or struggling to communicate to others what happened. This is the common experience for those with autism and Post Traumatic Stress Disorder (PTSD).
I am a young adult with autism and PTSD. I was diagnosed with PTSD in the summer of 2011 after experiencing a traumatic situation. In my opinion, my trauma was one of those instances of ignorance. I went to a camp where staff was supposed to know and understand autism, and how to provide supports. I even provided information in advance about some of my particular social and sensory needs. Unfortunately, the communicated capacity to be supportive and the reality did not match.
When I began to struggle, staff was not able to help me. I tried to communicate and let staff know how anxious and overwhelmed I felt socially and sensory-wise. When being overwhelmed affected my ability to participate, they lectured me and labeled me as being manipulative. There were what seemed to be attempts to provide “behavior supports” but they did not reflect an understanding of my sensory challenges or include any effort to work with me to establish effective strategies and a plan to use them. Instead, I was given arbitrary limits concerning sensory breaks along with conditions and ultimatums. The more I tried to use the strategies I knew worked, the more I was seen as not cooperating – manipulative – and was blamed for not doing better. My efforts to communicate were answered by more lecturing, labels, and inconsistency. I started to feel helpless. I was having meltdowns lasting 4 - 5 hours. In between, I was further strained by trying desperately – and as best as I could at the time – to communicate my discomfort and request supports that would help. After 3 - 4 days, my parents were called and my mom flew to come get me the next day.
After coming home, I began to deal with the aftermath of being traumatized. I struggled. I was confused, scared, anxious and upset. I wanted to know why the other kids had fun there – thrived there – and I didn't. I wondered if perhaps I just acted too autistic. I knew my behaviors and recurrent meltdowns got in the way. I wondered if what happened was my fault – turned the blame on myself. Through therapy, support from friends and family, and time I began to realize that it was not all my fault. I started to see the light at the end of the tunnel, so to speak. I knew I never had to go back to that place again. I remembered that I had effective strategies such as taking sensory and social breaks. I knew that I could use them when allowed. And when allowed, often could avoid meltdowns. I knew I would get through and be okay again. As time went on, I moved past the event. I trusted the people in my life who love and care about me. These people helped me when I was struggling the most. They did not give up on me and they encouraged me every step of the way.
This summer marked the three-year anniversary of my traumatic experience. It is hard to believe it has been three years already. It is remarkable looking back at where I was and where I am now. It has taught me that anything is possible; to persevere and not give up. I can do anything I put my mind to. I now use my experience as an opportunity to recognize the ignorance out there related to autism and to advocate and educate others so that they can provide better supports for others with autism. Currently, I advocate through writing as well as speaking to groups of people at conferences. I am a Young Leader for the Autistic Global Initiative (AGI), a co-editor for the ARI Adults With Autism eBulletin, an Advisory Board member for the Ohio Center for Autism and Low incidence (OCALI) and more. My one bit of advice for others who may be struggling with PTSD is to not give up – believe that it will get easier with time and accept help from others. It is a journey that one should not have to figure out and experience alone.
Becoming part of the autism community has positively benefited me as well. I have met so many wonderful people along my way on this journey. Best of all, I am so happy to be part of a group of wonderful individuals who have one main goal in common: education about autism and helping make the world a better, more understanding place for those who have autism. I have made some true connections and friendships with people in the autism community. These are people I have been able to text or message on a really challenging day or time. These are the people who get it and never judge me, but are there to listen to me and give advice from the been-there-done-that perspective. I have chosen to believe that some things happen for a reason, even if the reason was awful or did not seem good at the time. I do not know if I would be involved in the autism community so much today if it was not for my traumatic experience. Remember to reach for the stars, don’t give up and laugh, even on the really hard days.
About the Author
Chloe Rothschild is a young adult with autism who lives in Ohio with her family. She is a co-editor for the ARI Adults with Autism eBulletin, an advisory board member for the Ohio Center for Autism and Low Incidence (OCALI), and a young leader for the Autistic Global Initiative (AGI). She is on a mission to advocate and teach others about autism from her perspective.