On April 2, 2018, a Strive Story was published about me. It is always an honor to share my story, but it is always a little uncomfortable, too. The story is never actually true, even though it is the truth. In telling our tales in snippets, with a theme, a reason, a moral, a specific audience, etc, we tell the version of our truth that is relevant. It is a true story, but it also isn’t. And when people write a story about you, well, they change it more, getting it right and wrong all at once.
As we near the end of Autism Awareness and Acceptance Month, I thought it might be a timely opportunity to share this true tale of me with you. It is just the story of one girl. A bit about her childhood, her diagnosis, her journey into parenthood, and her international career as a Brain Change expert.
(These bits are mostly taken from correspondence with the Strive reporters. It would add another dimension again if you chose to visit the story they wrote built out of these pieces they read. Feel free to have a look at their story here: Enabling Kids With Autism to Flourish)
Here is a story of me:
I grew up “different” and was abused both in and out of the home. As a small child, I promised to make the world a better place by becoming a caring and fair mom of many. Later, after having two live daughters born to me, I had to have a hysterectomy and so I adopted six more children, four boys and two more girls. All from abused homes and with various brain dysfunctions, most prevalent in the boys was autism.
After raising my family successfully against impossible odds (although I’ve been married five times I was mostly a single mom) and healing myself, along with most of my children, I took my knowledge, my love of challenged people, and my quirky style into the world to help others. I am now an international brain and behavior expert, helping families around the globe by working personally with them, writing books, hosting shows, and creating programs.
Growing up I was never properly diagnosed (labels such as bipolar, schizophrenia, and clinically depressed were considered but none quite fit). I did eventually, as an adult, receive a diagnosis of “Historically Asperger’s” which, in my opinion and in the opinion of my children, fits just fine.
Here is a longer, more detailed, and hence a more REAL story of me:
What I meant by abused both in and out of the home: As a child I was an extrovert that was uncomfortable around people. But since my mom had a volatile temper I kept choosing to be in the company of my peers. There were other types of abuse in my home, and then outside of it, as well. My dad molested me, my uncle molested me, my grandfather sexually humiliated me, and I had sex with my teachers. This kind of abuse creates a nest. Whenever all this was overwhelming I would hide in bushes, closets, and cubbyholes. I had little meals and clothing packed in six or seven places around my house in case I was ever having to stay safe for longer than two hours, or if I got up the gumption to run away. I tried to kill myself five times but was too young to truly know how. And I gave sermons at church on layperson Sundays. I was different.
What I refer to when I say that I raised my family successfully against impossible odds: I feel like I understood my adopted daughter’s better because of my abuse, and I understood my adopted son’s better because of my brain. I understood you could be stupid and smart at the same time. Understanding all of that made it possible for me to believe that they could become more than anyone else believed they could.
However, my challenges at doing things in a socially appropriate way – for example, choosing to have my children walk to school together, rather than having two walk while the other two who were more afflicted take the severely special-needs bus, led to having them attached to each other with a scarf, which was brilliant and increased their independence – but caused the neighbors and educational administrators to attack us. This constant barrage of negativity made helping my children and myself pretty much impossible.
I was also blind to seeing sexual predators accurately and a couple of my children ended up molested – one of them by a school employee. I solved all of this in another unique and different way. I took everyone out of school and we lived in an RV going from resort to resort where everyone was treated with kindness and holiday smiles. All of my children improved, socially and academically, and I relaxed.
My ability think outside the box, because I wasn’t ever in it, was both a blessing and a curse; enabling me to solve funding problems, social issues, and other challenges while also creating a few problems of its own.
At this point in my life I do not have Asperger’s. However, I still get stuck on the occasional literal thought and think outside the box. Lucky for me and my patients my savant is in behavioral cause and effect.
Married five times but mostly a single mom, how I felt about that: Being a single mom was much easier than being a married mom. The ability to cooperate with somebody who disagrees with your unusual technique is too draining. When you understand the disability you’re dealing with, as I did, it takes a willingness to go into the disability, to join the person in their challenged place, and hold their hand as together you slowly shape behaviors toward a more normal presentation. Healing is messy. Most spouses don’t like it. It’s too much work and way to different. I do not have the skill – if it even exists – to blend that thinking with a neurotypical married life. PS: I was too busy to give my spouses enough attention.
Diagnosed as an adult, how and why that happened: I was fortunate and unfortunate in that a diagnosis for something like Asperger’s wasn’t even happening until the decade in which I became a parent. At that point, the abuse of my home and the difference of me had already created many emotional episodes. I spent my life living out of step and, particularly during adolescence, being suicidal. Once I had children I not only had something to live for but something to learn for, and so I began to self-help and heal in a very circuitous and somewhat problematic way. I became great at being a mom and matured well in that arena but, like many people with special brains, I had areas of complete inability. A couple examples of those inabilities were in basic math and in picking a good mate.
After many years of helping my children and myself I looked back over the landscape of my life and wondered what it would have been called. Even though I was very informed medically at this point, I thought it would be a good idea to get another opinion. I sat with a psychiatrist for five long sessions while we tried to tease apart whether it was just abuse as a child that caused my emotional behaviors and mental blind spots or if I actually should have been diagnosed with something. At the end of this process, she sent me what I didn’t know was a test email. She said she finally figured me out by looking in a very old manual. She diagnosed me with “Odducktoralis.” Even though this doctor had introduced herself to me as “The Odd Doc that Treats Odd Ducks” still, my literal mind sent me flipping through diagnostic manuals and looking all over the internet for research papers with this diagnosis. When I finally begged her for its meaning she said: “It’s official, you have Asperger’s.”
And I was relieved.
The good news is I specialized in autism and my children had lived with my difference for years. We didn’t feel a need for the diagnosis, yet we all felt better, it made sense, and my clients began to listen to me with greater interest.
Both are stories of me, both are true, and both are such a small piece of my puzzle that they are also a lie.
I tell this tale as a reminder for all of us this Autism Awareness and Acceptance Month. We are reading and hearing stories of people around the world who are on the spectrum. Hopefully, we are stepping up and making changes in our lives and the lives of others by being open and willing to learn something new.
But also, it’s of use to remember that we are being offered true lies.
This is at first confusing, of course. How can we learn from the stories of others if they are, by necessity, both true and not true? But then it is no longer confusing and is instead empowering. We ARE learning from the stories of others, which are both true and not true, and so we must always keep in mind that we are learning to empathize and grow great, not to come to concrete conclusions.
This is the story of one girl. It is her true story that isn’t telling you all the truth. I hope you are able to learn and grow from it.
An Actionable Piece of Advice for you This Autism Awareness and Acceptance Month: Okay, okay, fine, I get it. You want a specific concrete answer anyway. Well, I’ve got you covered. Instead of a concrete answer, I’m going to give you advice. I love giving advice! And I have lots to give! I help people all over the world become healthier and happier. Boy, do I have advice! ;D
So, at the moment, because of a patient I’m working with, what comes to mind as advice I want to give today is to point out with as much clarity as possible that a socially uncomfortable child is not made more comfortable by being forced into social circumstances. Putting these kinds of children into school settings surrounded by peers is a recipe for personality destruction, suicide, depression, schizophrenia, bipolar, all manner of disorders can find their roots in the well-intentioned forcing of social exposure via the school system on the hearts and minds of children who simply react to their pain by shrinking inwardly or exploding out.
How to solve that is to shore up their confidence away from their peers when working on their deficit areas. Simultaneously pair them with other likeminded children for fun events and activities. The artist can go to art class, the ruff and tumble kid can join a soccer team, the child who doesn’t have a strong hold on fantasy and reality can join a theatre group and learn how to storytell with flair. In this way, when they compare themselves to others (and they will) they are successful and part of the group and they’ll learn to enjoy being social. And while away from the group they’re working on their challenges and getting comfortable with making mistakes.
At some point this will all blend together and they will want to go to school in a more neuro-typical fashion.
To sum up: You help children by helping children, not by forcing them through.