The intent of this blog is to help other women come to realize their autism. It is a gift and expresses itself differently in everyone.
I want to change people’s minds about what autism is and what it isn’t.
I Have Autism…
Be yourself; everyone else is already taken.— Oscar Wilde.
I have autism.
I’m not waiting for a formal diagnosis (although I am waiting for my appointment) to begin telling you my story. I don’t need one to share my understanding about this topic. It explains my entire life experience up until now.
Two days ago I thought there was something wrong with me and the way I interacted with the world. I tried my entire life to fit in and understand other humans, and how they tried to interact with me. I’m 40 years old now and I’ve put in a lot of practice with people and, if I dare say myself, I have developed a pretty good grasp on how to be social, and what is typically expected of me in those social situations. It was never a conscious act to try to fit in, it was just something I struggled to figure out. I now discovered a name for it. Autism!
I am fully embracing this thing called autism. I, like many others, had preconceived notions about what it is. A disorder, a dysfunction of the brain, a disability…
But it’s actually none of those things.
It’s a gift from God.
I have unique abilities that I thought all people had, but it turns out they are just unique to me and to many other autistic people.
I don’t understand social interactions as well as “neuro-typical” types.
It feels to me that my understanding of life runs so much deeper and social interactions just tend to get in my way.
My entire life people told me things like I’m a Vulcan (Star Trek reference), or they cannot tell if I’m happy or sad. I’m stoic or unfeeling. (I think Vulcans were modeled after autistic types and I embrace that!) The rest is where I feel grossly misunderstood. I have enormous and intense feelings. So much so, when I was much younger I did not know how to properly express them.
Let me back up.
Growing up I found it extremely difficult to be in public school. This is why I am so adamant about keeping my kids home and home-schooling them. Other kids can be mean, especially when they find someone that is different and doesn’t fit in. I was bullied by everyone, even the bullied. (I have a lot of opinions about our current school system and how it’s failing everyone, not just the autistic. But more on that later.)
I never fit in and I hated my childhood. I didn’t understand why I was different, why other kids didn’t like me, what was wrong with me. (I will explore this at a later time in another blog post.)
But looking back on it, I was just on a different neuro wavelength. I think differently then other people. I think in pictures.
One of the ah-ha moments was watching a Ted Talk from a woman with autism named Niamh McCann. Here is the link to her talk. She looked and acted neuro-typical. She made reference to “bending over backwards”. She showed a cartoon of a man actually doing a back bend and the audience laughed. I didn’t understand what was funny because that’s exactly what I envisioned, except MY image of a person bending over backwards was someone doing a back-bend yoga pose. I am old enough to understand now why it’s funny that I think that way, but you can see as a child having these experiences, all day every day, it can be very stressful. It can also cause a lot of anxiety and even depression. My bio centered (experience) world is fundamentally different than most people who are NT.
Now I know this is true and why it’s true.
You see, I’m not alone. There is a serious problem in our society. As far as we have come, we still have a LOOOOOOOONG way to go with women’s equality. I don’t say women’s rights because we have equal rights under the law, but equality in the medical system is seriously lacking. It annoys me to no end that every time the conversation comes up about women’s health, it’s only always ever about abortion. Wake up ladies! Our health is so much more than that. So many women experience sexism from their doctors. We are not taken seriously when we come with our legit medical concerns. This sometimes leads to life-threatening medical issues. Or in my case and similar cases like myself, the idea that autism just doesn’t exist in women.
There is so little we know about autism still, especially in adult women. In my opinion, it is as prevalent among women as men. Statistically, boys are diagnosed, on average, at the age of 8, whereas women are not diagnosed until around their early twenties. I think this represents a missed opportunity for women to understand their autism during their school years, thereby avoiding a great deal of pain and suffering.
Autism presents itself MUCH differently in women than men. That is why women are only diagnosed when it is severe enough and manifests through noticeable symptoms, such as being non-verbal or showing development delays.
Two days ago when I found out I had autism, I started calling around trying to find out where I can go to get a diagnosis. Turns out there are not that many resources for adult females who are on the spectrum. There is only one clinic that specializes in it in the Portland area, and they are closed to new patients. It tells me there may be a hidden epidemic among women who are dealing with this and not even knowing it.
Luckily, I was able to contact a local university hospital and they have the ability to bring a specialist in to see me and help me with a diagnosis.
I’m still waiting for that referral to go through so I can make an appointment.
Some people may wonder why it’s important to get a diagnosis….. Because it validates my experience. It affects possible treatment options, counseling, understanding within families and other relationships. It says yes, there is nothing wrong with me, I am simply not NT. Plus, I want to share my experience with as many people as possible; I think there are a lot of other women out there who have this and just never knew it. Because let’s be honest, this is a boy’s issue, not a girl’s, right?
I’m a mom now. I want to make sure this message gets across to all my friends who have female children to open your eyes and observe her. Does she get bullied a lot at school? Does she like to spend time alone in her own little world? Does she seem to have a favorite hobby or thing she seems to be obsessed over?
In my childhood I spent all my non-school hours at home locked in my room. It was my safe place. I could be myself and do what I loved. Which at the time, was being obsessed with the book series, “Sweet Valley” (Kids, Twins, High). I would get lost in their world. I was fascinated by reading about how neuro-typical people would interact with each other. How these characters had friends and different types of groups of friends got along and what they were interested in.
Obsession was an understatement. I would take my allowance every single month, walk to the bookstore and buy the latest books in the series. This happened for several years. I had several hundred books in my collection. Then one day I got bored and ripped the covers off every single book, then cut the pictures out and creatively adhered them all in a really cool pattern on my wall. It made me happy. Some saw it as weird, but in my little world it provided me a place of comfort and an outlet to deal with my outside life.
My obsessions morphed from those books to The Carpenters (musical band from the 60’s and 70’s). They were my best friends. I would listen to them all day and night if I could. I didn’t like other music, just theirs. Karen’s voice was so soothing and the stories their music told fed my state of melancholy. They also had a movie made about their lives and I watched it every single day for a couple years. It was my intention to memorize it so when I went to church I could replay and watch it in my head so I wouldn’t be bored during the service. It was very effective in getting through having to sit quietly in the pew. Lord knows I never could follow what the heck the preacher was saying, but I digress.
The next obsession was Beverly Hills 90210. This was around the 7th grade by now. Every week I would look forward to Thursday night at 8pm. After the show ended for the evening, I would start the countdown until the next week. Back then there was no internet, so if you wanted to know anything about the characters or actors, you had to go out and explore bookstores and read the magazines and books written about them. Luke Perry was my favorite because his birthday was two days before mine and I related to him. He was always the loner. That I got.
Sometime around high school, my mom said I need to start making friends. I never understood why that was so important, but I tried. Turns out I was only good at making friends with the “wrong” type of people. Those who got into trouble and did naughty things. But hey, those are the ones that accepted me for me, or now looking back on it they probably used me because they came from a poor background, and my parents were very generous in making sure I had a driver’s license and car when I was old enough to drive. I was that friend with a car. (More on this later in another blog post.)
My point in telling you all these things is that these were the signs of my autism. They don’t look like boys’ symptoms. Do you relate to any of this story? Do you see any of this in your daughter’s experience?
I truly believe autism in women is likely a hidden epidemic and I find it to be completely unnecessary. Our medical system really needs to get on the ball (not literally) with women’s health issues. In my relentless, obsessive research since my discovery, women with undiagnosed autism have an eerily similar experience of having some sort of mental breakdown in their early to mid 20’s.
I can relate to that! This is the first time I can openly admit I had a mental breakdown when I was 24 years old. I attempted suicide.
Looking back on the experience I realize the psychiatrist I was seeing was about the biggest sexist asshole I ever met. He was annoyed by my mental illness and didn’t want to help explore different medications to help with what I was dealing with. He actually fired me for attempting suicide. Looking back at it now, I fully believe the medications he was having me take, pushed me over the edge in acting out on my feelings. That’s probably why I’m so anti prescription medication these days. I strongly feel like our current medical system is letting us down in caring for our mental health issues by failing to correctly diagnose, treat and support someone who is need of help.
Luckily, I did find an amazing therapist. It felt like pure luck, since I simply opened my insurance provider’s list, and picked her at random. She discovered rather quickly that I had an issue with Dissociative Identity Disorder (DID), and while that diagnosis still holds true, I feel the overarching issue is actually my autism. (I’ll discuss DID in another blog post.)
There are many overlapping mental illness diagnoses among women with autism. The most frequent is Borderline Personality Disorder. If you or someone you know has this diagnosis, it might be a good idea to explore the possibility of autism.
That was the darkest time of my life, and I think also for my poor family. My parents, I am sure, had no idea how to help me and they tried as hard as they could. And I worked really hard at getting better, as well. I still work hard every day trying to get everything right.
But something happened with my autism discovery. I had been washed clean. I don’t actually have anything dark inside anymore. There is actually NOTHING wrong with me and I am completely normal. I am just different then the societal norm.
I feel that autism isn’t a disability. Sometimes the symptoms can be, but my actual autism is not.
I discovered my autism in a funny way. My current obsession (that helps me cope with outside life) is watching the Big Bang Theory. The last eight months I watch the show every single day. FB has this fabulous video feed you can hop into a video and it plays short clips of all my favorite parts of the show.
Sheldon, while not ever formally having a diagnosis, certainly presents himself as having a very extreme form of Asperger’s (a now outdated term). I would often relate to him because of how he reacted to others in not really caring about them or what they are going through, unless it affects or relates to him somehow. It makes me uncomfortable because he doesn’t see how sometimes his friends get upset with him for coming across as so uncaring. I can also relate to that.
But it never occurred to me it might be something I was dealing with until I looked up Sheldon’s Myers Briggs personality profile and it turned out we have the same one (INTJ). That led me to googling autism in adults, then autism in adult females. Turns out there isn’t a whole lot out there. But I did stumble upon this test. I encourage you to take this test then share it with other people. Let’s let the cat out of the bag and finally reveal autism is indeed a condition women have, as well as men.
Stay tuned for more…..