Deborah Lipsky is a high-functioning autistic individual with substantial experience in emergency and trauma management, having formerly worked as a firefighter, emergency medical technician, and reserve police officer. She is now a public speaker and consultant for schools, agencies, and private parties, specialising in meltdown management plans.
Here, Deborah answers some questions about her new book, From Anxiety to Meltdown: How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively.
How and when were you diagnosed with high functioning autism?
I was diagnosed in 2005 as an adult. It came about because, after working with a state agency called Vocational Rehab that helps people who have difficulty become employed, they became frustrated with me because there were too many communication issues to work through, even with my counselor, that I decided independently to be tested for any mental illnesses to see what was wrong with me and why I had such difficulty with communication and social skills. I never expected the diagnosis but was relieved that it wasn’t mental illness.
How has this diagnosis affected your life, especially with regard to anxiety?
At first it was a relief as it explained why I had such difficulty relating to people and that I wasn’t “crazy” or mentally unbalanced as some people thought. After the initial euphoria I ended up going through the 5 stages of grief because I then looked back at my childhood and all the wrongs that were done to me because no one knew I was autistic. There was the usual denial, bargaining, and all the emotions right down to acceptance where I am at now. I am anxious now and have been all my life so a diagnosis really doesn’t change or affect the level of anxiety I felt and feel. It is part of who I am and I knew that before I was diagnosed.
Can you talk about the work you do?
My primary job is that I work for a seminar company doing seminars on understanding autism. Then on the side I do many consultations for individuals and agencies regarding clients with behavioral issues. I also do numerous keynote presentations, and private speaking and or training workshops for various agencies that contact me all through out the United States.
Both of your JKP books are about meltdowns – how did you become interested in this particular topic?
Meltdowns became my specialty because I would have so many and all the books I read on the subject at the time attributed the cause to willful behavior when I knew they occured not as a choice but as a reaction to overwhelming stressors I couldn’t control. I initially created a training program for hospital emergency rooms for the autism society of Maine to help professionals recognize the warning signs of impending meltdowns and how to avoid them in the first place if possible. Word quickly spread of this program and I began to expand that to doing private trainings for various agencies and then it became the focal point of the seminar I do for this company I work for now. I was also horrified at the fact that tantrum and meltdowns were considered one in the same when they were not and so I had to clarify the difference and give strategies to handle them both.
How did this book come about?
This book came about because my first book left a lot of unanswered questions about meltdowns and the confusion over tantrums and meltdowns. My first book was designed to be used in real-time to de-escalate a meltdown but obviously was ineffective in controlling a tantrum. I received many emails from people asking me to elaborate on the topic of meltdowns and tantrums because as an autistic person who experiences them both, my insights would be very helpful.
What makes this book stand out is the fact that it explains in simple, easy-to-understand terms how, why and what we are thinking; how being anxious is core to being autistic; and it looks at autism from our vantage point. It offers so many valuable “ah ha” moments throughout that it will help those on all ends of the spectrum and those inbetween.
What is the difference between a tantrum and a meltdown?
A meltdown is an involuntary reaction to overwhelming stressor(s) either from cognitive or sensory overload. A tantrum is a choice of willful behavior with the intent of manipulating someone else’s response to meet their demand.
What are some causes of meltdowns that ‘neurotypical’ people often don’t pick up on?
Meltdown triggers vary from individual to individual. Some big ones include sudden changes, vague questions or commands, not getting understandable answers to questions the autistic person asks, and being stopped from stimming when they are trying to stay calm.
What is the worst thing for a family member or other caregiver to do or say when an autistic person has a meltdown?
By far the worst thing a person can do when someone is escalating into a meltdown is to ask questions like, “What have you been taught to do in these circumstances?”, or to offer vague, non-concrete choices to diffuse a meltdown like, “Do you want to go out and play?”
What should they do or say instead?
Always use the person’s name repeatedly. Use short phrases that convey that you are there and will help them: “Deborah, it’s OK. I’m here to help.” Nothing wordy or complex as the cognitive functioning is decreasing by the second and they can barely process what is being said. Repeating these phrases acts like an echolalia that also helps in calming them down if used in a calming tone. Again what to do is covered in my first book in detail so I recommend anyone who is involved with autism to read that book.
How can understanding why meltdowns happen improve the lives of people with autism?
Mainly once people understand meltdown triggers and why they occur the enviroment can be modified to help reduce the number of meltdowns. And more compassion instead of critism can be offered to us because we feel awful afterwards; feelings of remorse and regret are common because we didn’t want it to occur. It isn’t like we have a “quota” of so many meltdowns we need to have in a day. It just happens due to overwhelming factors beyond our (the autistic person’s) control.
Copyright © Jessica Kingsley Publishers 2011.