Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism by Jeannie Davide-Rivera is an amazing story. It is a non-fiction memoir about the author’s life growing up with undiagnosed Autism. In her guest post introducing her book she wrote: “It took 38 years to be properly diagnosed with autism. Before that time, I had been misunderstood, mistreated, and misdiagnosed. It was not until after my diagnosis that a light bulb went on, and my world became illuminated.” We thank Jeannie Davide-Rivera for her excellent guest post that you can read here and now for this interview.
Lorna: Welcome to our Interview series! Let’s start at the beginning. Please tell us about your years growing up. Looking back what are some things you remember that you did or felt that were different than your friends? I heard an interview you had with Dr. Robert Rose where you explain about face blindness. Please explain what this is.
<< Jeannie Davide-Rivera: Hello Lorna, I am excited to be including in the author interview series.
Growing up I always knew I was different. In fact, I was proud of the fact I was different when I was a teenager because I did not have any of the “pressure” associated with peer pressure. My mind works in concrete thoughts; therefore, once made up, nothing or no one could change my mind. Of course, this, among many other things, earned me the label of stubborn, and bull-headed. Now I can see that I also had difficulty puzzling out what other people were thinking or feeling. I just naturally assumed that if I knew something, than you must too. Or, if I felt a certain way about a situation or a person, they felt the same way that I did. The possibility of others thinking differently than myself never crossed my mind.
Face-blindness was another obstacle that made me seem uncaring and aloof to the outside world. I remember walking through the halls of my high school (the short high school career that it was) and saying “hello” to many people who I did not recognize at all. I never could understand how all those people knew me because I had never seen them before.
The truth was though, that I did indeed see them before, and many times it was only the day before. I could often remember names and phones numbers, but faces–never. Face-blindness, also known as face agnosia, is a neurological disorder which affects two thirds of all children and adults on the autism spectrum. It is an inability to recognize faces. As I explained in my book, “we do not see with our eyes, we see with our brains.” Our brains process patterns, our environment, and everything we see. However, facial recognition is processed in a different part of the brain than everything else we “see”. It is this portion of the brain that seems to be affected in autistic individuals that have some degree of face-blindness.
Lorna: You wrote, “I grew up in a world before Autism awareness, and advocacy–and was born twenty years before Asperger’s syndrome (AS), a form of high-functioning autism, was recognized as a formal diagnosis in the United States. In fact, by the time AS was recognized, I had already dropped out of college, and felt like there was something very wrong with me.” Please share how it was that you finally did get a diagnosis of Asperger’s syndrome. Did it happen because you went to a family doctor or were seeking answers for a particular aspect of your life?
<< Jeannie Davide-Rivera: I was seeking answers. I had received yet another diagnosis from a psychologist. A diagnosis of bipolar disorder, to add to the long list of misdiagnosis I carried–ADD, Major Depression, Panic Anxiety Disorder. This “new” diagnosis followed an episode of “psychotic mania”, later properly recognized as medication induced delirium.
During all the years of misdiagnoses doctors continued to add psychotropic medications to my “treatment” plan, until I was quite literally insane. After stopping all the medications, I realized that I had holes in my memory that swallowed up not days, but years of my life. I was not about to blindly take any kind of medication again. The new diagnosis of bi-polar made no sense. I researched, and read every memoir of those who are bi-polar, and the diagnosis–like most of the others–just did not fit.
Since that particular physician was trying to insist that I needed medication, even when I displayed no symptoms of depression or mania, I decided to see someone different. I was lucky. I began to see a wonderful doctor who actually listened to me, and almost immediately identified my sensory processing disorder (SPD). I accidentally stumbled upon a few books mentioning Asperger’s Syndrome–some fiction, some not–and I showed a startling resemblance to the person(s) depicted in the stories. That is when my own research began, and upon further exploration and extensive neuro-psychological testing I received a formal diagnosis of Asperger’s Syndrome.
Finally, for the first and only time, I was handed a diagnosis that fit. It did not explain one or two of my symptoms/difficulties/traits, but it explained them all.
Lorna: At 38 years of age, now knowing that the reason life had been different/difficult for you was because you had Asperger’s how did you go on from there? If you had known much earlier what could have been different?
<< Jeannie Davide-Rivera: I think many things could have been different for me both growing up, and more drastically as an adult. The biggest thing that could have been affected is my self-image–the way I thought about myself. When I was younger, I thought there was something wrong with the whole world–people were strange. By the time I was an adult, I thought there was something wrong with me. I started to believe that I was lazy; I didn’t care about people because I couldn’t remember their faces after all. I was stubborn; I was stupid; I was unorganized, flighty, and air-headed. I could probably go on for pages listing all the negative self-loathing that came along with being undiagnosed for so long.
Another aspect that I think would have been very different is that I would have had different career choices. I would have been able to recognize what I was better suited for, and avoided what I could not accomplish. Instead, I spent too many years banging my head against the same brick walls that I never learned not to run toward. I felt not being able to do something that overloaded my senses, or required more executive functioning than I possessed was a failure on my part, a character flaw.
Lorna: You live in South Carolina with your husband and three autistic sons. Was it you who first noticed that your children had autism? What prompted you to have your children evaluated that resulted in finding out they had ASD. My daughter was only diagnosed with Tourette syndrome when she was 19 years old but she noticed one of her three daughters had Tourette when the child was only a few months old. When the toddler was evaluated by a specialist he confirmed that yes, this child had Tourette syndrome also.
<< Jeannie Davide-Rivera: I noticed the symptoms immediately in my children while learning about my own diagnosis. Once I knew what to look for, the signs were clear. Doctor’s had not noticed before my pointing to many of their traits because I simply avoided doctors unless we were ill.
I did not recognize any of these “signs” because I thought there was nothing at all wrong. After all, my children were just like me. I did not recognize anything out of the ordinary. Of course, their school teachers disagreed with my assessment of my children being just normal kids. This is one of the examples also of what could have been different had I known about my own diagnosis earlier. I would have known what to look for in my own children, recognized it, and would have been able to provide them with support.
My oldest is now 14 years old, and I am having tremendous difficulty finding accommodations, and support for him at this age. He struggled all throughout school, and I believe an earlier diagnosis for me would have translated to earlier diagnosis for my children.
Lorna: How are your sons doing? Having a mom that knows what it is like being on the spectrum does it make it easier for them, for you, for meeting with their teachers and health care professionals?
<< Jeannie Davide-Rivera: I hope that my children’s lives are easier for having a mom who understands them; my mother certainly did not and still does not understand me. Many of the childhood battles that took place in my home—meal time arguments, homework struggles, and communication issues–do not take place in ours.
I understand that no matter how much I may want my middle son to eat broccoli with his dinner, it is not going to happen. He cannot tolerate the taste or texture of the vegetable in his mouth–just like I cannot eat peas. There is no amount of yelling, screaming, or threatening that will change that fact that he would rather starve, than eat a piece of broccoli. What others may perceive as willfulness, I know as tactile sensitivities. I will not force on them what they cannot tolerate. Besides, will the world really come to an end if my child refuses to eat broccoli? It is not a matter of wills.
As far as meeting with physicians and teachers, I don’t know that it is easier. I understand my child, but often times do not understand what is wrong with the teacher. I have explained time after time, that the boys need to know what to expect. If you tell them that they have ten more minutes before it is time to stop reading and start doing math, then please make sure they have ten minutes. The transition would be much smoother. It seems like many teachers just want the children to do what they say, when they say it with no regard to how they are speaking to them–or how the child’s mind processes the instructions.
I become easily frustrated with both physicians and teachers alike, and think that it is often more difficult for me to meet with them about my children than a nuero-typical parent. Oftentimes, I am being overwhelmed, and struggling with my own communication issues during these meetings.
Lorna: As soon as your guest post about your book, Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism, was posted it received many hits and many shared your post on Facebook, Twitter, Pinterest, LinkedIn, etc. Writing a book is a huge undertaking! Bravo you are an exceptionally gifted writer! What are some comments you received about your book that have made the effort all worthwhile?
<< Jeannie Davide-Rivera: Thank you Lorna, that is great to hear! I receive emails, and messages daily from those who have read my story, and it always makes my day. I receive many messages from women who have been diagnosed later on in life as I was thanking me for sharing what I went through.
The feeling that we are not alone in a world that always made us feel lonely is a powerful thing. Letting others know that they were not the only ones that experienced life the way they did was one of the primary motivating factors for writing my book. What surprises and delights me is that I receive even more message from parents of children on the spectrum–something I had not quite counted on–telling me how my experiences gave them a glimpse into their own children’s minds. The parents who have contacted me have shared on numerous occasions that they often misinterpreted their children’s behaviors, and since reading my account they are better able to understand how their child perceives the world. What more could any author ask for?
Lorna: Where can we read other articles you have written? For my last question I often ask what is on the person’s To-Do list… do you want to share what big event is coming up in your life? Or tell us about how we can follow you by mentioning your Facebook page, Twitter, etc.
<< Jeannie Davide-Rivera: My next big event? I am expecting baby number four in early September (2013)–another boy. Yes, that will make four boys! Life is never dull around the Rivera household I can attest to that.
On the writing front, I am working on my next project which is a book about Autism and Relationships. My husband and I will be married for 16 years this August, and have climbed many mountains to come to where we are today. For the first time, my husband Mark will be co-authoring the book in order to give readers a perspective on life, love and marriage from both the autistic persons point of view, and the neuro-typical (NT), person without autism, point of view. We intend to discuss many of the typical struggles of an Autistic/NT relationship, and how we have learned to overcome many of these obstacles. Hopefully, you will find our new book on the shelves in early 2014.
For more information and articles written about autism, readers can visit my website: Aspie Writer: Understanding Autism from the Inside at www.aspiewriter.com, where I write about life in our Aspie home. I have also recently been recruited to write for Answers.com as their Autism Category Expert Writer. My new articles will be appearing on Answers.com shortly here.
Buy the Book!
Twirling Naked in the Streets and No One Noticed: Growing Up With Undiagnosed Autism was released in e-book and paperback format on April 10, 2013. Paperback: 204 pages.