“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.