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Autism and Women: A Fresh Perspective

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?

WRONG!

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…..

3 . . . 2 . . . 1 . . . Meltdown

“People think about autism as something with kids. Well, those kids grow up.” – Jason Katims

I’m not going to lie. It’s been really tough the last few weeks.

I discovered something in my never-ending research on autism.

I have meltdowns.                                       

Not like a child, but sometimes it can seem like it.

My poor husband had to experience a meltdown the other day. It was so unpleasant. I could not express what I was thinking or feeling, and I was extremely frustrated with all the things that were going on in my home and in my head. Anytime my husband would ask me a question, I would snap at him or ignore him. I would also react to every single thing he did. He literally could not do anything right, in my opinion.  I can see myself acting this way, know it’s not the right way to handle a situation, yet I still did it. I desperately tried to hide fact the I was in meltdown mode, but I just come off as pissed off, pouting, avoiding, and pretending I’m not mad, but I really can’t hide it. The reason for the meltdown isn’t important, except to say it happens a lot. It’s usually triggered by some tiny event, something my husband wouldn’t even have noticed, and ends up snowballing into a huge, exhausting fight.

I have stepchildren. Two of them. They are good kids for the most part and I’m extremely lucky they are such good kids, but they are still stepchildren, and I am still the stepmom. If you are a stepmom, you might know what I’m talking about. Being a stepmom is difficult enough, but for me, it’s one of my main triggers.

My biggest trigger, I think, is that our household routine gets completely disrupted when they come over and it’s stressful for me. My husband and I don’t have nearly as much time together as we normally would, which makes communication exponentially more difficult. There are always surprises, and I feel like I have zero control over what happens when they are here. Schedules are not followed, my rule over the house gets ignored quite often, and since I’m not the parent of these other two children, I have no say in what happens in this house when they are here. Often the stepchildren end up calling the shots and I have found it’s easiest for me to retreat into my room until they leave.

Sometimes hiding works and when it doesn’t, sometimes I have meltdowns.

I found out meltdowns look different for everyone. Some people might cry or blow up. Other people may completely avoid a situation all together or run away. Some people my even get violent with their meltdowns, while others self-harm or have destructive behavior.

For me, I get really frustrated. My feelings are very dark and heavy. I get tension all over my body, especially in my shoulders, jaw and head, and it causes quite a bit of angst. I think the angst derives from being out of control in my home, my safe space. The angst isn’t rational. It could be something small like my step kid leaving a water glass out and it spills on the floor (even though I’ve asked several times on every single visit to leave the beverages in the kitchen). Most people clean it up and move on with life. I sit and stew over it and let it disrupt my day to the max. I know it’s unproductive, yet my brain, for some reason, gets stuck or fixated on this one thing that was wrong. It’s stressful for the whole family and puts a strain on everyone around me.

 I expect my husband to know what is going on, but he can’t read my mind. Which is unfortunate, because I struggle with putting into words what is happening inside me. Perhaps my biggest issue is prejudging my thoughts and feelings as being completely irrational and thinking that sharing exactly what’s going on will come off as profoundly childish, and dare I say, bitchy.

In fact, I’m pretty sure my thoughts are most irrational because after any meltdown has occurred, I can subjectively reflect on the situation and realize whatever I thought or felt was way over the top and from an outside point of view, I completely overreacted. Yet I still can’t control it.

It is painful to admit that, I, a grown woman of 40, still struggle with what I feel are childish behaviors.

I spent many years in counseling to learn how to better verbally express what was happening inside. It helped substantially, although I had no idea I was dealing with autism at the time.

My meltdowns are triggered by many things. One is not being listened to or feeling disrespected. I also am triggered when someone lies to me or tries to take advantage of me in some way.

Typically, I don’t even catch the trigger right away, and it can fester for hours or even days before I realize what is happening. In the meantime, it can create a buildup of pressure. Even now I still don’t know how to manage these things as well as I would like.

The meltdowns don’t feel good when they are happening, but after the meltdown is over, the release of pressure that had been built up inside make me feel so peaceful, but also leaves me and my family exhausted, and wished I had been able to handle it differently.

I have been reading a lot about the concept of masking. Masking is what autistic people do, women in particular, to hide their autism. “While autism is usually diagnosed in childhood, some people remain “off the radar” for a long time and only receive a diagnosis much later. One possible reason is that they have learned socially appropriate behaviors, effectively camouflaging their social difficulties, including maintaining eye contact during conversations, memori[s]ing jokes or imitating facial expressions.” Click here for full article.

When I was involved with a network marketing company, I struggled with my masking a lot, but didn’t even know why I was doing it. All I knew is that I was so tired all the time from trying to exist in the world. I longed to find a profession where I could live authentically, without having to pretend to be what I perceived others wanted me to be.

My masking can sometimes lead to what I imagine would be the clinical term called psychosis. I think I have behaved a certain way toward people, but then I go back and analyze the experience I had. Because I have such trouble reading other people, I always tend to imagine the worst. In my mind, so many people hate me simply because of something I may have said or done incorrectly.

It’s exhausting.  You can imagine that having these experiences all the time could make someone shut themselves in their home and never leave again.

Over the last couple weeks, I considered that a possibility. I’ve entertained the idea of never leaving my house again and it gave me comfort in knowing that was a possibility. It’s so appealing in some ways, but deep down I know there is so much more I need to do with my life that I just can’t let that happen. Perhaps when I’m in my later years I might consider becoming a hermit. HA!

Back to the meltdown thing.

Sometimes my meltdowns occur by avoidance of someone.

Several years ago, I was so overwhelmed and overloaded, I became unable to speak or move. My poor husband (he really is a saint, isn’t he?), had to go to work and I had to watch all four kids and pretend I was a normal human being. I hate that I made him worry so much, but I didn’t know I had reached my limit at the time. I was so incredibly overextended, I lost complete control of my mental state.

Since then, we have both realized over stimulation and chaos is not an easy road for me to go down. He has been so good to work with me and provide different ways for me to get what I need (like kids not ruling the house), and providing structure for everyone. I think kids like structure and rules, and I like them too, because I know what’s expected of me and I know where my boundaries are.

The nice thing about being an adult is that I can create my own boundaries and rules. Sometimes when I’m in a state of overwhelm, it’s hard to fix things. But when coming out of that state, I can go in and tweak things.

I’ve had another type of meltdown, where I’ve had to lock my kids out of my room and just scream and let it all out, like a toddler’s tantrum. I had one of those since my kids have been around. My sweet kids were standing on the other side of my door melting down with me. That was a rough night. After about 15 minutes or so I was done and felt much better. I was able to embrace my kids and love them and let them know it wasn’t their fault and I was sorry.

This type of meltdown happened a lot more when I was young. I remember clearly when I was in the 3rd grade on summer break. I went to my grandmother’s all the time and LOVED the quiet and solitude her house offered. I would go over there and get to watch tv and play with candles (I was fascinated with fire) for hours. My grandmother taught me how to bake and I had so much fun over there. Well, I really, really, really, really wanted to go over there one week. (I was so excited to get to escape from the daycare my mom ran in our house. Having kids around all the time was so overwhelming, and I longed to go to my grandmother’s.) Well this time, for whatever reason, I was told I couldn’t go. I was SOOOOOOOO upset and screamed my bloody head off on my bed for over an hour. I was exhausted by the end of it. I didn’t know how else to express my frustration when I couldn’t get my way.

Looking back at it, I’m sure I embarrassed my mother to no end, with the daycare parents coming to pick their children up, and I was in my room screaming bloody murder and not stopping.

Anyway, my point is, I don’t do that anymore. I learned not to. But that’s not to say I don’t have other types of meltdowns. Since my discovery of autism, it occurred to me I may be able to get some useful help with this besides just behavioral therapy.

I finally found a doctor in my area, who carries my insurance, and knows what to look for in female autism. I’ve found many other providers who claim they can diagnose female autism, but it’s not their specialty and that worries me. That’s why I am taking my time to find the right person.

In the past, I’ve seen several (all male) doctors or psychiatrists who thought I was making stuff up…. I’m still not sure why they think I would do such thing. I got passed around this circle of doctors who would refer me to one another and would talk to me as if I was unintelligent. One doctor told me his only available appointments were at 9 pm in the evening even though my ex-husband called earlier and there were other appointments available for him at regular times of the day. I was so desperate for help that I was trying to figure out how to make the 9 pm time work (because my autistic brain didn’t understand he was being an asshole to me), and the counselor turned it and said I really didn’t want to come in that late and that time wasn’t going to work for me. Shortly after that incident, I was fired by my psychiatrist for the drugs not working for me. The psychiatrist only tried one antidepressant and antianxiety medication and fired me when it didn’t work and I wanted to try something else. I was completely disrespected, and not taken seriously. In the past, I was hurting and desperately trying to figure out what was going on, and these assholes did absolutely nothing to help. Unfortunately, there are MANY of those types of doctors out there, and I am doing my best to sort through them and get the help I need.

I’ve scheduled and cancelled several appointments over the last couple of months because I want to try to get this right the first time. I believe I’m autistic. Self-diagnosis for women in autism is a real thing. Here is an article that can help guide you through the process of self-diagnosis if you suspect you may be autistic:

It baffles me why our medical system is so slow to understand female autism, when there is so much suffering out there. I’ve never heard of any medical condition where people so readily self-diagnose yet are so accepting within that community with a self-diagnosis. Considering how expensive (ranging from $1500-2500 for an assessment) it can be and even finding someone qualified, I can understand why self-diagnosing is common for autism in adult females. Then once you are diagnosed, it doesn’t change except maybe you have more self-knowledge. I’m still searching high and low for support for women who have autism and found a fantastic Facebook group that supports, validates, and lifts one another up.

I did finally find someone who I think can provide me an accurate assessment and diagnosis. I located her on Psychology Today’s website. You can search by location, insurance, and if the professional treats autism in adults. I also found a psychiatrist who understands brain function and chemical interactions to actually help someone like me to try to balance out my brain chemistry.

The problem with good practitioners, is that they are very busy and often it’s difficult to get into their practice.

The good news is that I am starting to recognize my triggers and can start dealing with them as they come up. My husband (did I mention how wonderful he is?) is such a good guy and wants to help. He is on board with whatever I need to do to get the diagnosis and the help I need, to be able to live our best lives together.

I’m ready to live well, and I’m able to do just that, if I can find the right tools and put them to good use.

This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.


The Art of Conversation

“English is my 2nd language. Autism is my first,” Dani Bowman

I was having a conversation yesterday with my husband about the art of conversation. I always knew conversing with others was a difficulty for me, but I never understood why.

One of the things that bothered my husband about me is my lack of communication. It never dawned on me when my husband would ask how my day was, he was looking for a monologue type answer. Instead it was always just answered with “good” or “fine”. Because it usually was, and well, what else needs to be said about that?

My husband told me, however, is that good or fine was not, in fact, what he was looking for. What he really wanted to know was, what I had done during my day.

Well, why didn’t you just ask that then?

Because it’s considered polite conversation to ask how my day was.

Really?!?

Why doesn’t he and other neurotypical people understand this is confusing language? Why can’t he just ask me what he really wants to know?

I have often been accused of being too direct. I find it refreshing when people shoot straight with me. Like it or not, I know where someone stands, and I don’t have to guess at it. And I really suck at guessing.

Then the question I have is, how do I know what people are really trying to ask me? If a checker at a grocery store asked me how my day was and I said fine, is that an acceptable answer? What else are they really trying to ask me? How would an autistic person know these subtle differences in the art of conversation? How do non-autistic people know? Is this just something most people are born with? Do they learn it in school? Or growing up, do they just pick up on these subtle nuances in conversation?

The worst is the drive-through at our favorite coffee shop. My husband loves the barista’s chit chat with him while he is waiting for his americano to be brewed. Often when I’m driving he will lean over and make polite conversation to compensate for my lack of dialogue. I don’t know if he feels like he needs to do this to make me look better or to make the barista feel better about talking to me. Either way it bothers me sometimes because I feel like I’m not doing conversation correctly.

When I do try to engage in conversation it can sometimes drive me crazy. I have to think on my feet and insert random phrases I’ve learned over the years to make the conversation go smoothly. If I’ve been successful at it, people don’t notice I have struggled to find the words to say to these perfect strangers.

I realize the baristas are trying to be friendly and they are good at the art of conversation. I, on the other hand will go out of my way sometimes to avoid a conversation with someone. I realize neurotypical people do this as well, but I do it because I literally have nothing to say to someone, and I would prefer not to have to go through my stored data files in my head of what and how I should say things to said person.

It’s a lot of work.

It’s exhausting.

When I know ahead of time I have to talk with someone, I can practice what I am going to say to them. I talk to myself a LOT in my car when I’m alone. I work a lot of things out that way and drum up the courage of talking with others.

It was sometime in my mid 20’s that I realized I needed to learn how to talk to people. I was at a gathering at a friend’s house and everyone was hanging around chatting with one another. I was sitting alone on the couch observing when I realized I had no idea how to talk to people. I had never gone up to someone and started talking to them. That was when I consciously decided I needed to learn this skill. It was really hard until I realized a few things.

1. Once I learned how to ask questions, conversations became a lot easier to manage.

2. People love talking about themselves.

When you meet someone new, it is polite to ask them where they are from and what they do. After doing that, typically I can find other questions within their answers to ask. I discovered when I did this people thought I was interested in what they were saying and interested in them. You become likeable when you do this.

Second thing I realized, is people love talking about themselves. Well, most people. I hate it because, like, what the heck do I even share with someone? But most people know how to share. When people share with you and you listen well and ask questions, they think you are the nicest person on the planet.

This is the formula I have discovered works best for me. I admit I still have not figured out how to talk about myself yet. That’s ok though. It makes me mysterious in some ways and I kind of like that.

In social situations, I get more exhausted much more quickly than being at home, alone. There is a price for talking and socializing. If I do it for too long, I will need plenty of down time. That might look like retiring to bed at 8pm (or whenever the kids go to bed) or just not making any social obligations for a while (until my batteries are recharged).

This makes friendships difficult sometimes. For the longest time I didn’t have a “friend.” I had lots of acquaintances, but the friend thing is hard to navigate for me. I find it to be less stressful but lonelier when I don’t have friends.

On the flip side, I am already so introverted I don’t crave much girlfriend companionship most of the time. When I do, I need it to be meaningful.

My best friend is someone I see occasionally, and I rarely communicate with her. I love her dearly, but am grateful she doesn’t require much of my time or energy. She always seems to feel bad she is so busy, and we can’t really hang out, but I’m good with that. She has kids all the same age as mine and our husbands enjoy each other’s company, so when we do get together it is rather a great experience for everyone.

My best friend and I share so many things in common. We grew up together and have known each other forever, but only recently have we reconnected. I feel like I could use a little more companionship with other females, but most of the time they just wear me out with the idle gossip or meaningless social conventions.

I tend to prefer my conversations to go deep on topics I love. I don’t do well with drama or gossip. I tend to come off as harsh or unfeeling when these topics come up. So many females seem really good at those things too.

Will I ever be able to converse without internally struggling?

Probably not.

Will I be able to get to a place where I won’t get burned out so quickly and easily with conversations?

I hope so.

Until next time…

Clutter and Surprises

“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need, they’ll make their own boxes,” Dr. Temple Grandin

Marriage and other things.

It’s hard to believe it’s been nearly seven years since my husband and I met and got married. We dated for a whopping four months before we tied the knot. It has been a whirlwind marriage. We met on a dating website and what drew me to his profile was his love of God and his profession. He’s a physics and astronomy professor at a local college. I’ve had a lifelong obsession of astronomy, especially with the mysterious stuff like dark matter and dark energy, and how from the perspective of light, there is no time. A photon of light can literally be everywhere in the universe instantaneously. (Sort of parallels with the teachings of God and light, but I digress). It’s fun asking him the hard questions and trying to imagine what exactly is going on in the universe and explore the possibilities.

He is a really, really good guy.

Often, I have find myself frustrated with him for no apparent reason (now I believe it’s mostly sensory overload). He is able to keep his cool and help me come down from my craziness. We used to have disagreements quite often over many things because he has his idea about how things should be done, and I have mine. Being the way I am, I’m typically an all or nothing type thinker and I’m right all the time. So says me…

Several years ago, I had our second child 15 months after our first one while we were living in a three bedroom apartment. We had SO MUCH STUFF the piles were literally falling over everywhere. Every single corner of the apartment was stacked with stuff. To be fair we moved from my husband’s house into a smaller space with all our stuff combined and it was just too much to handle. With the overwhelming task of caring for two high needs babies along with my stressful job and my husband working a lot, it was too much to take.

That’s when I discovered (through a friend) a magical woman named Marie Condo.

She encouraged me to get rid of all my crap.

And boy did I.

My husband is a sentimental guy. To be fair he lost both his parents several years ago so he feels very connected to the things they owned and have passed down to him.

I’m not sentimental.

At all.

I discovered how not sentimental I was when I started sorting through everything I owned and realized I could get rid of it ALL. It took me a few weeks to go through everything I had and paired down to 1/10th of what I previously owned. It felt so incredible. My mind was able to rest for the first time in over a year. I wasn’t nearly as tense as I was before. There was less crap to trip over. It was truly amazing.

Getting my husband on board was a totally different matter. He was very resistant at first but started with the way too small 80’s sweaters he wore when he was a teenager. Pretty sure they are back in style again. HA.

Then he moved onto other parts of the closet and by the time he was done, it was amazing. There was room between articles of clothing.  You could actually see every single article of clothing we owned, and wore every stich of it (ignoring the Star Trek uniform in the back). The noise in my head had quieted and I had room to think clearly for the first time since my children were born. I never realized how much clutter impacted my mental space. I highly recommend everyone get the Marie Condo book and start sparking joy in your lives with owning less!

My husband is an amazing guy. He is resilient, jovial, happy go lucky, everything I am not. He helps me not take life too seriously. Sometimes I get stuck in my head or obsess over something and he reminds me to put things into perspective.

It helps.

My husband likes to tease me about things. It’s funny. Before I figured out I am autistic, he would always tease me. I knew he was but I still took it seriously. I can’t help it. Even today when he teases me, I cannot help myself but take it seriously. My brain gets so confused! When we first got together, I thought he was making fun of me by teasing me. It would hurt my feelings when he meant just the opposite and was trying to show his affection by the teasing.

Teasing me always made me feel insecure. I could never figure out what people’s intensions were, if they were being seriously mean or playful. After my autism discovery, my husband teases me even more, about being autistic. Don’t get offended. He means it with love. If you met him you would understand he would never say something mean or rude on purpose. Finding out about my autism has helped him a lot to understand how to better communicate with me. Before I made this discovery, we would often have a misunderstanding because I couldn’t figure out our nuanced conversations. I could easily have entirely missed the point and we could end up in a fight. That would be extremely frustrating for both of us because of the lack of understanding on both of our parts.

Since my autism discovery, our worlds have gotten so much better. He just slightly changed how he approaches things with me and my reactions to things are completely different.

For instance, I hate surprises. If he wants a friend to come over for the afternoon, I need to know in advance. Several years ago, he would make plans to have a buddy come visit us and they would go out but wouldn’t give me notice. It drove me crazy! Not because I wanted to control him and what he does. Rather I really prefer to know exactly what’s going to happen in my near future. Turns out I really don’t care if he wants to hang out with his buddies, I just like to know way in advance.

The reason why it’s so important for me is because we have two little kids and we have a lot on our plate. When he would go off with his buddy unannounced for an evening, the image of how I thought our evening would go is suddenly shattered. I use the word shattered because that’s how it felt. Take a window or mirror and drop it. All those pieces are completely broken on the floor, never to be recovered or be the same again. Life falls apart. The result is I would be grumpy, sharp with my tone or be completely unable to communicate my thoughts or feelings. If I had known several days in advance, I would have time to imagine what the evening will look and be like, then I could adjust my expectations accordingly.

Turns out I am grateful he can have space to be social with his friends. He needs that time. It’s who he is. He is a social butterfly that needs constant interaction with other people. I get that and I’m happy he feels like he can comfortably get what he needs, as long as there are no surprises on my end.  We both understand that respecting each other is fundamental in a relationship. The problem on my end was I didn’t know what I needed from him and I couldn’t figure out how to communicate that to him. It was very frustrating for both of us. Now however, we are both able and willing to talk about what we need from one another and it’s pretty awesome things are really starting to fit together so much easier and our understanding of each other’s needs are so much more clear.

Until next time….

Public School

Before I start this topic, I want to make clear I am not an expert in teaching, nor do I have any desire to be such. These are some of my experiences growing up in the public school system in the 80’s and early 90’s. I have close friends that are very good teachers that care immensely about their students and this entry does not reflect on my opinion of teachers today.  

School sucked.

I hated school. It was boring; I never understood teachers and what they were trying to teach me. By the time I was in the 5th grade I was certain everyone thought I was just stupid, including myself. Reading and comprehension work was nearly impossible because, well, all those words on the page were supposed to mean something, but to me it meant confusion and frustration because my brain has significant trouble turning words into pictures I can understand.

My dad tried helping me study once in the fifth grade when I was failing history. I don’t remember much except I think he got frustrated with the whole thing too because let’s face it, history to me was not something that was real. History was just facts in a book that didn’t apply to me in any way.

There was the occasional art class that I LOVED because I was able to express myself through my hands. Although those did not happen very often in school, which was too bad. School was always focused on reading and writing, and it was awful. Every single class was focused around reading a textbook then answering questions about or interpreting what we had read. Short answers were easy enough because typically they would just restate a sentence within the text; I just had to hunt for those specific words to complete the sentence. Other questions, however, required critical thinking about what I read. Those types of questions were most difficult because my comprehension and critical thinking capabilities were not properly developed and caused a lot of frustration. My brain is not a word brain. It’s a picture brain. Show me a picture of something and I will remember it forever.

Memorizing poems was the worst! Metaphor after meaningless metaphor, stacking words up and trying to memorize them in the correct order was incredibly stressful. I was always baffled how my classmates could study a poem for a few minutes and have it ingrained in their brains. My senior year of high school we had to memorize a poem by Chaucer. I spent several hours one evening studying this poem and ended up in tears because I still could not remember even the first line. I decided it wasn’t worth the stress of memorizing the poem and I would prefer to receive an “F” on that assignment then spend another frustrating moment on it.

This is just the academic side. Now let’s talk about the people side.

Kids are not nice to other kids that are different. I was bullied while growing up and I hated going to school. On some days I would pretend to be sick and beg my mom to let me stay home from school because I could not handle the stress and pressure of being in a classroom with all the other students.

Then there were the teachers. I cannot remember a single teacher who reached out to help me in any way. To be fair, they had a lot of other students in their classes to focus on, but still. But someone must have noticed because I do recall around the fourth or fifth grade I was taken out of class and given some tests by someone who wasn’t a teacher. The results of these tests were never explained to me. I still remember some of the tests because they had pictures. Those were fun. I have no idea what came of the tests but at some point, I was put in remedial math and English – which was fine with me because I got to skip science and history.

My worst teacher was Mr. Dose (name changed to protect his identity) in the 5th grade. I think I could technically call him a bully. One time he made me kneel on the hard floor for several days while I was in his class because I liked to tip my chair back. I couldn’t help it, it helped me focus to try to balance in my chair. So, to punish me I had to kneel on the floor in front of my desk and pay attention. After about an hour of this my knees really started aching. Finally, one day I had the bright idea of bringing a pillow to school so my knees wouldn’t hurt so much. My dad asked what I was doing bringing a pillow to school and when I told him what the teacher was having me do, he got PISSED. He wrote a letter to Mr. Dose, and to this day I have no idea what it said. But after that day, I never had to kneel on the ground again.

Another time I was held after school for something and had to write 100 sentences. Being the poor speller I was, I spelled a word wrong so I had to rewrite the entire thing again. I kind of wonder now looking back if it wasn’t just Mr. Dose taking his frustration out on me.

Growing up, I seemed to find myself in trouble for things that were never quite clear to me. Once I got grounded because a parent of my mother’s daycare drove past me while I was standing at the bus stop waiting for my ride to school. Apparently, I glared at her when she waved but I never even noticed her drive by. I knew better than to be rude or mean, it just quite often came across that way because I was usually wrapped up in my own internal world and oblivious of what was happening around me.

I was afraid of my peers. I was weird. I didn’t understand them and I didn’t have any friends. I would sit up next to the school building during recess and just watch the other kids play. The teachers who supervised the playground activities always stood huddled, chatting away with each other. Only one time in seventh grade, did someone ever ask why I didn’t play with the other kids. I didn’t know what to say so I just shrugged my shoulders. I was never asked that question again.

I didn’t know how to play with others. The other kids played things I didn’t like – tag and kick ball. The girls usually huddled together and talked about things I did not understand nor cared about. There was no one like me and I didn’t know what to do about it.

I mentioned in an earlier post that I had been diagnosed in my mid 20’s with Dissociative Identity Disorder (DID). Looking back at this diagnosis, with the undiagnosed autism, created a very difficult situation for me. One of the main traits of DID is compartmentalizing experiences and hiding them from myself so I can function “normally” in society. It overlaps with the concept of how women with autism mask their symptoms to fit in. The masking was very natural to me and something I did without even thinking about. I will explore more of this in a later blog. I think around that time I developed a lot of bad coping habits that seem to be typical among females with undiagnosed autism.

One time, while riding on the bus to school, I had suddenly realized I was in the seventh grade, not the eighth and I had another year of torture ahead of me. What a depressing realization! Don’t ask me why I thought I was in the eighth grade. I got confused a lot when I was that age.

Self-harming by way of cutting became a way to express feelings that were too big and overwhelming to handle. I felt that I didn’t have emotional support at home, and I was completely alone in my world. It would be almost a trance-like experience to cut my arm. There was never pain. Just relief. Then, of course, following the relief was always the shame that went with it.

I tried experimenting with the eating disorder thing around this time too. I knew exactly what I was doing. I was an obsessive fan of Karen Carpenter and idolized her anorexia. I thought I was a chubby girl growing up because my body type is curvy, so I have larger hips and a bigger bust. I somehow got the message that I was fat and therefore that was the reason why people didn’t like me. Karen Carpenter was an inspiration because if I could be like her, then other people would like me better. Most mornings I committed myself to not eating for the day and usually started off strong but by the time dinner came around I was hungry and would get mad that I could not follow through and stop eating. The longest time I went without consuming food was one week at a summer camp. It became a game to me to see how long I could go without eating before anyone noticed. I felt amazing. I had so much energy and felt like I could go for ever. After you don’t eat for that long it becomes much easier to stay the course.

Guess what. No one ever noticed. Except my mom when I came home, as I had dropped a ton of weight in that one week. She told me I should go to camp more often; I assume she meant because I would lose more weight. I don’t know if my parents ever noticed my disordered eating. My dad worked hard and traveled a lot with his job. Once he went to Europe for two weeks and I didn’t notice he was gone until after a week went by and I realized I had not seen him. I finally asked my mom where he was. That wasn’t unusual in our home. My dad traveled a lot for his job, and it was typical for him to be gone for 3-4 days at a time.

I’m sure my dad would have preferred to spend more time with us kids, but society compels us to work endlessly. My mom was busy with her own daycare business. I can’t imagine how stressful it was for her. She raised a lot of children in her lifetime. Putting myself in her shoes I probably would have been completely burned out by the end of the day and could see how something like my hidden eating disorder would have easily been missed. I typically spent all my free time in my room, including dinner and other mealtimes. In my mind, I never considered it a real eating disorder because I felt like my motives were different from what other people with “real” eating disorders.

Internally my world was such a mess. Life was so confusing, and school was a complete disaster. My only outlet were my obsessions that I would focus on when I was at home – The Carpenters or Beverly Hills 90210.

Reflecting on these experiences now causes me to have a lot more compassion for the entire situation. Growing up I think my parents never quite knew what to think of me and the idea of autism didn’t really exist except in extreme, non-verbal cases. Now, at the very least, I would have an IEP (Individualized Educational Program) or at least a diagnosis of autism.

My point is I am not the only female with these experiences. There are probably thousands more women out there with similar stories as mine, but they don’t have an explanation as I do. They fell through the cracks of the public-school system, and perhaps they didn’t have the support at home as I did. They never fit into anything and could never figure out why. There is an increased risk of suicide among people with autism. More studies need to be done to figure out why this is, but here is one study that shows how statistically significant this is.

I personally feel like my experiences growing up with the idea that somehow, I was different, or less than, made me prone to depression and suicidal thinking. It can wear on a persons psychological state when constantly being reminded they are lacking or not good enough, and never told why. It’s no wonder autistic people struggle with these issues.

Until next time….

Excuse Me While I Overthink EVERYTHING

Behavior is communication. Change the environment and behaviors will change. – Lana David

In five hours it will be exactly one week since I figured out I am autistic. I started seeing my counselor again about a month ago to help with the stress of daily life and decided to come clean to her about my profound and life changing discovery.

To my dismay, she did not rejoice as I did when I presented her with my findings, articles, tests and quizzes. In fact, she very calmly told me I perhaps should not jump to any conclusions until I have a formal evaluation. Until then, there is no need for me to jump on the autism band wagon (paraphrased).

She is not an expert on autism and that’s expected, since autism in women is considered rare here in the US. So in her defense, she took a rational approach to my findings and, if I were in her shoes, I would have probably felt the same way. (It’s very difficult for me to put myself in other peoples shoes sometimes)

I’m not in her shoes, though. I’ve been living in MY shoes my entire life and I’m raging mad at her response. Turns out I get raging mad a lot, but I’m really good at hiding it. I took her rational approach as her not believing in what I was telling her. Furthermore, I took it as she thought I was stupid for thinking I could possibly be autistic. I think because I’ve been unable to put this topic down for the last seven days, it has completely consumed me, therefore when others don’t share the same deep level of interest as I do, it makes me feel very uneasy inside and feel that I have once again done something wrong.

My entire life I have misunderstood what people think about me and about life. One of my old friends once told me something very profound and it has helped me understand a little more about the world. The truth is no one really cares about me…. In the sense that people are often too consumed or wrapped up in their own lives, they rarely think about me or what I’m experiencing. It sounds harsh but it has really helped me to relax about being so completely different and thinking the world is staring at me in judgement.

Nobody really cares, from my point of view.

Why?

My theory is because I don’t understand people or understand how they think. I always knew this was a deficit of mine but never knew why. I discovered unless someone is very direct with their words and meaning I tend to put the information into my brain processor, and it spits out all sorts of ideas of what someone means. I must have learned long ago how to sort and process the information, but my filters that have been set up are not correct. They do not reflect the reality of other people. I don’t know if this is necessarily a trait of autism, but I tend to take things to a negative level. It takes a lot of practice being positive but I’m not very good at it I’m getting better at it. Perhaps it could be from all the bullying growing up or the low self esteem I developed when I was little. It’s easier for me to accept people don’t care over people thinking bad things about me. Probably neither one of these things are true today. I just don’t know.  

I remember in the fourth grade I was sitting in class, completely spaced out. I hated school. My family and I were going on a trip and I would miss a week of school. I thought deep down that the other children in the class were not actually real and were only there because I was there and when I was gone, missing this week of school, there would be no one there. I also pictured them being stored in a closet until I came back because none of it was really real. Make of that what you will, but from my perspective I think I was really confused about what it meant to be human.

So, it was probably a good thing I talked with my counselor today, because I’ve had time to process it. I can cool my jets about being autistic. I still know it’s my reality, but I can calmly move forward once again with my life and continue what I was doing before.

The good news is I’m able to recognize my autistic behaviors and have already started modifying them and trying to cope with them better. I look forward to getting my evaluation and seeing what kinds of resources there are out there.

Stay tuned for the ongoing saga.

Having Vs. Being

“It seems that for success in science or art, a dash of autism is essential.”   –   Hans Asperger.

It’s been several days now since I discovered I am autistic. I’m obsessed with trying to find out everything I can about it. Turns out it’s still really misunderstood, probably why I was never diagnosed in my 40 years.

Something I have come to decide though.

I think there is a difference between having autism and being autistic.

To me, having autism implies something you received or caught outside of yourself. Kind of like cancer or the flu. It’s an invader that you need to be rid of. People talk a lot about curing autism. I don’t like that, because what exactly do we want to cure? The way I see the world? Or perhaps so I can fit into society better? From my perspective, it feels like neuro-typical people want to feel better about their situations or because they will be more comfortable accepting autistic types of people into their lives and society. Of course, these are all my perceptions and sometimes I can be way off in what people are actually thinking, and it’s something I will always question within myself.

Before I knew I was autistic, I too thought it was a gloom and doom epidemic. You hear the statistics. 1:100 kids have autism, 1:88, 1:64. And so on. It sounds like ‘the autism’ is coming for us and invading our society and must be stopped.

What I really think is that we are just now starting to know more about what autism is, and what it is not.

I am autistic. I was born this way. God, for whatever reason, decided to give me a different and less common type of brain processor and it’s who I am. I don’t claim to know the science or the genetic makeup of myself or anyone else, but I do know it’s a part of me and trying to remove that piece will leave a huge gap of who I am.

Before I discovered I was autistic, I suffered from a lot of gut issues and stomach problems. When I eat certain foods like gluten and sugar that’s highly inflammatory, my symptoms get a lot worse. I develop severe mood swings, my thoughts seem to be more extreme, my relationships suffer…. My symptoms do cause me a lot of problems.

The same thing happens when I’m stressed. I never knew it, but I have a sensory processing issue as well. Going to Costco on a Saturday with my two kids is a disaster waiting to happen if I didn’t get enough sleep the night before, or am already frustrated or angry about something.

The other day I was standing in Costco waiting to pick up a prescription. Ugh! As I was talking to the pharmacist, I noticed all the different noises I was experiencing within the space. I could hear the beeping of the checker machines near the front of the store as well as the baby crying three isles away; the cart turning the corner to my right and another cart turning to my left. There was also the woman standing behind me talking on her cell phone and the guy behind me sitting in a chair tapping his hand on his cart, waiting for his name to be called. There was the samples lady near the main isle talking about her energy drink. I am aware of all this noise. Sometimes I can tune it out but other times, especially when I’m stressed or have anxiety, I can get very agitated by all this input. I never knew what to call it – sensory overload. I process everything I hear and decide if it’s relevant to what I’m trying to accomplish. In addition, my other senses of sight, smell, and touch are all active. It’s hard living in this highly stimulating world for any long period of time.

But sometimes I go to Costco and I can deal with the hustle and bustle of all the sensory information being received. There are a lot of factors for me and the coping strategies I have developed over these last 40 years.

Coping with my autism is something I learned how to do. I’m a smart girl. I realized in my late 30’s I need more quiet and alone time to be able to think and work things out in my head. I love to spend a lot of time at home in my garden touching plants and talking to them. Taking care and watching them grow is very therapeutic. Designing the layout of my garden has also been very therapeutic and a lot of fun. I wish I had more time to focus on that, but life is busy. I’m a wife, mom of my two young and very precious kids, and also have two bonus kids from my husbands previous marriage. Not to mention I’m preparing to start my own online marketing business.

What happened if you took autism away from me? Or cured it? Would I be a different person? Would the outside world be more comfortable around me? Would I be able to fit in, finally, to what society expects from me? Would I lose my passions I so deeply care about? If you take those components away, you would probably have to also take away the good stuff too. Like my ability to see and read architectural blueprints and be able to visualize what a structure would look like before it was ever built. Or be able to sort information in a logical order for it to make the most sense.

My favorite job in the world up to this point (besides being a mom) was being an inventory manager at a local clinic. My job was to track over 400 supplement products and make sure we never ran out, but also never had too much. It fed that part of my brain that needed structure and systems. When I first started, the entire medicinary was a disaster. My predecessor was so incredibly disorganized and could never keep the right stock of the right products and we were always out of the most important supplements our patients needed.

It was such a fun project to come in and get a handle of the situation and turn it into a well, oiled machine. I wasn’t expecting it, but I was able to nearly triple our sales over the course of five years just from having the right inventory stocked on the shelves. It turned into a game. How many bottles of a certain product can I have before I needed to order more, and not run out.

My coworkers were always amazed how I always knew exactly how many bottles of each product was on the shelf. Every once in a while there would be a product we had run out of and they would ask if I needed to back order it, but turns out it had been received by shipping just that morning, I had not had time to restock the shelves before we sold the product.

It is my super power. That job was the best thing that ever happened in my life up until that point. I also learned how to talk with patients and practice my social skills with them. I got really good at it. I even had the opportunity to provide customer service to some of the most difficult patients because I was patient in listening to their problems and working with them to provide the best solution for them. I practiced my empathy with them and discovered if I can show emotion for their situation, they will be helpful and kind to me in return. That is such a good skill to learn and have.

So if I was cured of my autism, does that mean I will no longer be able to hyper-focus on inventory management, and care about those games I played with each product to see how close I could get without actually running out?

I think my employer would probably have been disappointed if I suddenly lost that ability but I could finally have a neuro-typical conversation.

I guess what I’m trying to say is autism is not all bad. It’s good. Just because there are some down sides to being autistic doesn’t mean it’s something that must be gotten rid of.

“As part of human diversity, autistic persons should be embraced, celebrated and respected. However, discrimination against autistic children and adults is more the rule rather than the exception.” – UN Human Rights Experts

Read more about this quote here.

Let that sink in for a second.

I want to make clear I am speaking only about my autism. There are different levels of autism used to be described as low functioning vs. high functioning (aka Aspergers). I am just talking about my high functioning experience. If you would like to know more about the latest terminology to describe different levels of autism, read here. I don’t pretend to know what it’s like to have a disabled or low functioning autistic child and it is not my purpose to minimize the experience parents go through with a child with these issues.

When I hear things like “we have to find a cure for autism” or “we need to fix autism” it makes me frustrated because there is a serious lack of understanding of what autism actually is. It is how a person is made. It’s in our DNA. It’s no accident it runs in families. When people say these types of things it makes me feel like they lack the understanding of how autism runs deep to the core of me. And what they feel needs to be cured is a huge part of me. Like I am not a whole person because I am autistic. I’ve dealt with that my entire life and I reject that. Now that I figured out I am autistic I am finally whole!

Being on the spectrum doesn’t mean I am lacking in anything. My brain just works differently. Every person on the planet has some characteristics of autism. Some just have more of them, and more extreme presentations of those characteristics.

Monique Botha gave the most inspiring and amazing talk a few years ago on her autism. Her words are so profound and also terribly disheartening because society would rather get rid of autism than to have to deal with it. “I’ve been pushing for a society to be accepting my whole life, but it’s actually been easier to rewrite genetic code than to be accepting of us.” I encourage you to watch her. The statistics she shares are frightening and should be a wake-up call to us all.

I don’t have autism. I am autistic.

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