The Reality of My Life with Autism

lisa

Learning that I’m autistic after 38 years of wondering why I was so different from everyone else was liberating, heartbreaking, joyful and devastating. Those conflicting emotions are a good representation of what it’s like for me to live with Asperger’s on a daily basis.

Some days, I am overjoyed to have the unique strengths that accompany Asperger’s. I love being able to deeply analyze things and present an unusual viewpoint in most situations. My creativity and sense of social justice are also some of my favorite personal qualities, along with my loyalty, lack of prejudice and unique type of love. In fact, one of my friends once said that I love the few people I allow into my life with a fierce and loyal intensity, and that’s definitely an accurate statement.

On the other hand, there are days when I would give almost anything to not be autistic. Dealing with emotional regulation issues, sensory overload and the frustration that accompanies knowing that I’m never truly 100 percent understand by anyone, and probably never will be, can be overwhelming and very sad.

It’s also devastating to know that some of my issues make life more difficult for my fiancee. I wish more than anything that the emotional regulation issues would disappear because I absolutely hate crying all the time and having inappropriately large reactions to everything. Even when I’m happy, my emotions are too big and too intense for most people. It’s no wonder that when I’m sad, my Aspie way of emoting all over everything causes problems.

The worst part is that the big outpouring of emotions isn’t even an accurate reflection of how I really feel most of the time after I have a few moments to process things. For example, I can feel very emotional, sad, insecure and even unsafe when something disrupts my usual routine or an expectation that was put in place. This is exacerbated if the unexpected change happens in the morning.

However, after I calm down and examine my true feelings, I’m usually nowhere near as upset, insecure, etc. as it felt like I was during the few minutes of panic. But by that time, whoever had to deal with me has taken the brunt of my emotions. I can’t imagine how difficult it is to stay centered and remember not to take my initial burst of emotions personally. It takes an extraordinary person to keep seeing past this stuff again and again, not to mention being willing to rebuild each time after it gets to the point of burn out.

I have found an extraordinary person, and that’s what actually gave me the push I needed to finally face my Asperger’s, get diagnosed and begin getting help from a social worker and some anti-anxiety medication. Now that I know what causes my meltdowns and sensory overload, I have been able to start taking better care of myself. I can also more easily identify and ask for what I need. As a result, I feel more clearheaded than I ever have before, even though I definitely still have my challenging Aspie moments.

My social worker says that the challenging aspects of having Asperger’s can become less and less intense over time as long as I keep utilizing a sensory diet, taking my medication and working through things with cognitive behavioral therapy (CBT). I know that I will never experience the world like others do. I will never stop hearing electronic noises from two floors down, nor will I ever be able to go to the mall or a grocery store without taking in way too much sensory input.

Having said that, I do believe that it’s possible to live a more comfortable and “normal” life, and that’s exactly what I’m working so hard to achieve. I want to get to a point where my strengths are the primary thing that people notice. I want my fiancee to not feel the burden of wondering when I’m going to have my next meltdown over seemingly nothing (although it’s never about nothing — it’s just usually not about the event that finally causes me to meltdown).

I’ve read about other Aspie adults who have gotten their emotions more under control and who have meltdowns once or twice a year instead of once or twice per month or even week. That’s the world I want to live in. That’s the world I want for my fiancee. I have enough trust and faith in myself to know that I can get there. Just like everything else in life, though, it’s going to happen one step at a time, and there are going to be backslides from time to time. In those moments, I question whether or not I’m worth it. I hope my fiancee keeps answering that question with a yes long enough for me to get there.

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Medication Issues 


I was initially extremely reluctant to get put on any medication for anxiety because I’ve had bad experiences with anti-depressants in the past. This was before I knew I had Asperger’s, though, and doctors had me take a standard SSRI. Research indicates this is not a good medication family for most autistics, so it’s not surprising that previous medications didn’t help me. 

I’m going into week seven on Wellbutrin and Propranolol for anxiety, and the combination works great. Unfortunately, my tendency to still get very anxious at the doctor’s office gave me three really high blood pressure readings in a row, so the doctor put me on the water pill Hydrochlorothiazide. 

For the first four days, I experienced a lot of physical side effects, including headaches, fatigue and dizziness. I also became increasingly emotional and had a bad meltdown. By day five, I sank into the deepest depression of my life. The odd part was that it came on about an hour after taking the pill and disappeared approximately 12 hours later. This cycle repeated on day six with an even worse level of depression and a huge amount of paranoia, and I knew then it must be because of the pill. 

I couldn’t understand how a water pill could be doing this until I did some research and discovered that they can indeed cause depression. In fact, 2.67 percent of patients taking this pill report developing depression, and this is most prevalent in women. 

My fiancée was understandably upset at seeing the mess the medicine turned me into, and she made several attempts to contact my doctor’s office, but their phone line was down. So she somehow convinced my paranoid, delusional and deeply depressed mind to go with her to visit the doctor’s office. When we got there, we found they were closed due to a power outage. 

The next day, I tracked my doctor down at another facility and discussed what had happened. He asked me to take the pill at night instead to see if that helped, with the theory being that I’d sleep through most of the symptoms. 

That night, with lots of trepidation, I took the pill again. And an hour later, I felt the depression come back. I couldn’t sleep. I could barely move. And when I did finally doze off and on for a few minutes, I had terrible nightmares. Needless to say, that was the last time I took that medication. 

Interestingly, we got a home electronic blood pressure monitor a few days before, and I might not have ever needed those meds in the first place. I can get a relatively normal reading at home, especially when I’m relaxed. It’s only when I’m feeling really anxious that it spikes up. 

I tested it once during the depression stage, and it was 214 over 113. Now, it’s reading around 131 to 141 over 72 to 81 at most times, with readings as low as 122 over 69 after taking a sensory break. Although below 120 is optimal, I was put on the water pill because my readings in the doctor’s office were always 170 or higher (with one reading that happened during a massive meltdown day coming in at a staggering 280 — needless to say, they almost hospitalized me and wouldn’t let me leave for several hours). This showcases how Aspie anxiety can mess with blood pressure reading results, so if you have Asperger’s and have been told you have high blood pressure, be sure to start testing it at home when you’re feeling relaxed. 

Although the depression went away completely within 24 hours of getting off the water pill, the damaging emotional effects of the traumatic experience lasted a lot longer for me and my fiancée. It’s difficult to trust future medications after an experience like this. The water pill made me so depressed and so paranoid that I thought my fiancée was lying to me and trying to trick me into being locked up in a mental ward. I also had suicidal thoughts for three days. 

All of this was very painful for both of us, and I still feel some anger about the fact that I was harmed in such an extreme way by the medication. If I didn’t have such a strong will to live otherwise, along with the love and support of someone who stayed by my side through most of the depression, I could have ended up physically injured or even dead because of taking one week’s worth of medication. This is a terrifying thought and is something everyone should be aware of when they start a new prescription. 

Confusing Others by Showcasing Aspie Traits

lisa sigh

Discovering Asperger’s was akin to finding the answers to the universe. Finally, my entire life made sense, and I actually felt like I belonged somewhere. I also allowed myself to explore those feelings very freely for the first couple of months, which led to a lot of behavior from me that was uncomfortable for others. Instead of making a conscious effort to keep doing everything possible to fit in the socially acceptable way, I let myself be freer, more naturally childlike and less restrained. Now I’m balancing out into a happy medium because I know that going too far in either direction isn’t a good thing for my overall life and happiness. After all, without some balance, the people who matter the most to me would have a very difficult time understanding everything.

Unfortunately, the fact that I was able to blend in for so long and hide some of my Aspie traits has led at least one person to wonder if Asperger’s is the right diagnosis for me. The short answer to this question is yes, and the long answer is also yes. Until I knew about Asperger’s, though, I just felt like a freak, and I had no real understanding of what was causing me so much emotional distress. I know I didn’t like loud sounds, and I knew I always felt dizzy after too much exposure to sunlight and certain types of light bulbs. I also had regular shut down days where I felt like I couldn’t face the world, and I spent a lot of time crying alone at night and having emotional flareups that were far out of the line for the apparent trigger event.

Now I understand that I was dealing with sensory overload and meltdowns. So now I try to avoid or minimize the things that cause me to overload or meltdown. But doing this has caused confusion for others, and I believe this is because they think that all of this came from out of nowhere. But it didn’t. I’ve had sensory issues, social problems and emotional regulation issues for my entire life. When I was younger, I tried to drown them out, along with the depression and anxiety that accompanied them, with everything from music to drugs. But they never went away, and I never understood what was causing them.

I feel sad that my discovery and path to self-acceptance and a better understanding of my sensory needs has been difficult for someone who I love very much. Discovering Asperger’s has been very difficult for me too because it has changed the way I view my entire life history. Now I know why everyone thought I was different and picked on me. I know why I always felt like I was missing something and never understood why people flipped between liking me and hating me with no apparent reason. I know now that I wasn’t picking up on their social cues, and this caused me a lot of heartache and lost friendships/relationships.

On the positive side, I also know that being an Aspie has allowed me to be intensely loyal, loving beyond the norm and passionate about social justice. It has fueled my creativity and made me non-judgmental in a way that those who truly get to know me have always mentioned as one of my best qualities. It has given me resiliency, which I have needed to call upon time and time again in order to survive the many harsh realities of this world.

The only thing that is different about me now is that I finally know what causes my emotional distress, foggy head, discomfort in social settings and anxiety, which has given me the ability to try to stop these things in their tracks. As a result, I am living my life differently, and I no longer force myself to suppress things in a way that was always extremely detrimental to my physical and mental health.

I have answers now, but answers won’t mean anything if I don’t continue to make necessary changes, along with going to see my social worker, taking my anti-anxiety meds and incorporating a sensory diet into my daily life. Ultimately, this should all allow me to become the best possible version of myself, but I know it’s going to take time. I hope that others can understand these things too.

The Post Discovery After Effects and Perks of Meditation

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Finding out about my Asperger’s has been a wonderful and relieving revelation in many ways, but it has also caused some strife and heartache. It is difficult at first to take in the information that you are autistic. For me, this was less about social stigmas, although I did have some fears of being rejected and judged. However, the bigger factor was about learning to view myself and 38 year’s worth of experiences through a different lens.

Suddenly, most of the issues I’ve had in my life made a lot more sense, but it was also easy to see how badly people had treated me because they didn’t know that I have a neurological condition. This made me alternate between feeling angry at them and feeling compassion for those who are or who used to be close to me. After all, I didn’t know what I was dealing with, so how could they? Also, my emotional responses can be really heightened, and my sensory overload in stores and crowds never really made sense to anyone. But how could it when I didn’t even know what it was?

Perhaps the worst part of learning that I’m an Aspie is that I went through a very rough adjustment period for about two months. This greatly challenged my relationship and changed some important dynamics. For about seven weeks, I was beyond hyper-sensitive to everything, and it seemed like I was never going to be able to stop melting down at least two to three times per week. This was flat out awful for me and for A, and I feel badly for everything I put her through. I also know how fortunate I am that she loves me enough and feels comfortable enough with me that she was honest about the strain that everything was putting on her and on our relationship.

With the exception of one annual blip (specific dates can be really difficult for Aspies), I’ve been feeling a lot happier and calmer for almost a week now. Part of this was working through a major relationship issue with A, but it’s also about finally finding a therapist I can talk to, discovering the therapeutic benefits of painting and beginning a regular meditation routine.

Meditation is something that I never really understood. I used to think that it was impossible to think about nothing, and if I tried it, I had to use a visualization technique to keep other thoughts at bay. Now, I’m learning to be more mindful and to at least let thoughts and experiences such as itchiness pass by during meditation instead of reacting to them. And the craziest and most unexpected thing of all is that it’s actually working!

I can now let my mind drift for a full five minutes without actively engaging with any negative thoughts. I do visualize rain when needed to block out intruding thoughts and feelings, but sometimes I can actually sit there and find complete silence in my mind, at least for a few seconds.

This has been one of the most amazing discoveries of my life. In just a few days, I’ve been able to get a better grasp on my feelings. When I combine this with using a CBT app and writing out my feelings, I am much more capable of dealing with things that would have sent me spiraling out of control before.

I understand that this is something I will need to work on daily in order to maintain it, and I also know that I will still meltdown and have emotional expressions that seem way too big for the moment at hand. That’s part of being an Aspie. But I believe that just as exercising builds muscle and stamina, daily mediation can build more emotional resilience and help me keep my feelings in check long enough to at least examine whether or not they’re linked to something that is actually true.

The concept of “is it true?” was taught to me by A, and it has a lot of power. We all have a critical voice in our head, and sometimes it can be overwhelming. It’s easy to let the mind run off on a negativity marathon and cause extensive personal suffering, but the pain is often experienced without any actual justification. So now I’m trying my best to challenge my negative thoughts by asking myself “is this true?” Again, this may not be perfect, and I know it won’t always work, but I’m grateful to have another coping skill that I can turn to in moments of need.

Asperger’s can be challenging, but I also love many of my positive Aspie traits. With therapy and all of my other outlets, I have every reason to believe that I can get my emotional regulation more under control than it has ever been. And so far, that’s exactly what is happening.

Feeling Like a Loser Because of a Meltdown

lisa loser

I understand that meltdowns are part of being autistic, but this knowledge doesn’t make me feel like any less of a loser for having them. This feeling becomes exacerbated when a meltdown comes at an extremely inopportune time such as what happened today. A and I drove four hours to meet up with her mother, so naturally, I had a meltdown when it was time to go to dinner and ended up staying behind at the hotel.

The entire situation is complicated by the fact that her mother has been less than supportive of our relationship and always looks at me as if I’m some type of disgusting bug. They had a big falling out last year and didn’t talk for a few months. Now they’re working on repairing their relationship, and meeting up today and tomorrow is a piece of that.

The trip was chaotic for me, and then things got worse when we reached the hotel. They gave us a key that didn’t work. We went back to the front desk, and they reset the key. This should have been all good, but it turns out they had given us a key to an occupied room. So we went back to the front desk for the third time before things were straightened out.

After finally getting into our room, we discovered the TV wasn’t working. This wouldn’t normally matter, but The Walking Dead season finale is on tonight, and watching it is very high on my list of priorities. The TV did get fixed, but the combination of everything that happened, along with my nervousness about seeing her mother and the fact that she arrived more than an hour later than originally planned put me into meltdown city.

As soon as I felt the irrefutable signs of a meltdown coming on I began to panic because there was no time for it. A was very sweet and caring, and she told me to stay in the room, order some food and she’d go to dinner without me. I know she meant it and was trying to do what was best for me, but it made me feel like such a loser.

I HATE feeling socially handicapped in this way. This has been an issue for me my entire life, and I’ve only recently learned why I have this type of reaction. I keep telling myself that this is part of how my brain is wired and that I need to be kind to myself in these situations. That’s all well and good, but it’s really difficult to unravel a lifetime of social conditioning and feel okay with allowing myself to have meltdowns sometimes.

I feel like I made life overly complicated for A today because I couldn’t deal with things as a neurotypical person would. I know I put unnecessary stress on A, and that makes me feel so sad and small. In my good moments, I wouldn’t want to lose all of my positive Aspie traits in order to be “normal.” But in moments like this, I wish more than anything that I could stop having this type of issue. I feel like a burden on A and a loser for not being able to hold off the meltdowns and deal with life in a more typical way.

Emma Dalmayne has written one of the most accurate descriptions of a meltdown that I’ve encountered to date:

When you have a meltdown, it’s as if the world is ending. Everything is too much and you feel like an overwhelming darkness has engulfed your very being. Irrepressible anger that may seem completely irrational to an outsider can be inwardly devastating us internally…

…it can take me missing throwing something into the bin or my PIN failing to go into my online banking properly and I will puddle, literally explode/implode and sob like my heart will break. It will be because of a build-up of things, and frustration will be the reason.

There’s also the depressive meltdown, the one that makes you feel like you’re nothing, worthless, and like the world would be a better place without you.

There’s no rationalizing with someone in either of these meltdowns. If you tell us it’s OK, it’s not. You are trivializing our distress and it will make us worse. “Stop” or “Get a grip” are also triggers, because we would if we could; no one wants to feel this way.

This is 100 percent accurate, and I’ve had both of these meltdown types countless times. The frustration/anger ones are very self-damaging, but the depressive meltdowns are the worst. Today’s meltdown fits into the second category, and it left me wanting nothing more than to hide in a small corner or to somehow escape my body.

Catastrophizing 

  
I’ve always been a catastrophizer. Any situation that you can think of can be imagined in a million negative ways, and I’ve probably already done so. It doesn’t matter if the catastrophizing makes zero sense because I’ll still end up wasting mental energy on it.

I wasn’t surprised at all to learn that this is a common Aspie trait. Almost everything I learn about the experience of people with Asperger’s, especially the female experience, results in yet another light bulb moment. This is equally liberating and frustrating because it’s nice to finally understand each of my quirks, but it’s also irritating to discover how many of them are simply hardwired into my brain. 

Here’s an example:

A had an appointment today at 2 p.m., and I asked her to text me after. By 3:05 p.m. I was already having ridiculous fears about something having gone wrong on the way to or at the appointment. My brain concocted dozens of awful scenarios, and I was starting to actually get truly nervous by the time she texted me at 3:09 p.m. 

To put this into perspective, I knew her appointment was from 2 to 3 and that it might not start exactly on time. I also knew that she may have needed to fill out some paperwork or do something as commonplace as visit the restroom during that time period, which could have extended the timing of everything. 

The rational part of my brain understood all of this, but that didn’t stop me from needlessly spinning my wheels. This isn’t a trust issue, nor is it a lack of awareness that my catastrophizing is unrealistic and completely unhelpful. It’s something that persists despite all of this, and it gets worse if I’m having an emotionally difficult day. 

Catastrophizing is exhausting, but it’s also a regular part of my Asperger’s experience. This is something I really want to get a better grip on and plan to work on with CBT. I hope that my brain will soon finally get some rest from all of the needless anxiety that catastrophizing causes me. 

Telling People About Asperger’s 

  
At the age of 14, I came out of the closet and subsequently dealt with many years of people having an issue with my sexuality. Now, at the age of 38, I’m coming out all over again, but this time it’s about being an Aspie. 

The process of telling people is equally terrifying and liberating. Although I know that most of the people in my life are open-minded and will not have an issue with this new information about me, it’s still nerve-wracking to tell someone. 

The reality is that all of the traits that are connected to my Asperger’s are a huge portion of who I am and have always been. The label of Asperger’s puts some of my quirks into perspective and may help others relate to me better, but it in no way changes who I am. I just hope everyone else realizes that… 

I know that some adults who find out they have Asperger’s feel more inclined to keep that information to themselves, and I think everyone needs to do what feels right to them. For me, though, it’s not an option to keep this from the people who truly matter to me. 

I’ve always believed in living authentically and in setting an example through my personal actions, which means that coming out to people about having Asperger’s is a vital step in my overall process of accepting this new information about myself. 

I also feel like I need to be able to show everyone in my life that people with Asperger’s are not the characterizations they see in movies and books. We are quirky in our way, but we can also be kind, caring, intelligent and dedicated. 

A (my fiancée) has told me that although some of the stuff that comes along with Asperger’s can be stressful at times, she loves my quirky traits and understands I wouldn’t be the same person without them. That level of understanding, honesty and acceptance is what I’m hoping to find in everyone else I tell. I know that Asperger’s complicates things at times, so I fully accept that there’s an added level of stress that this adds to people. But really, doesn’t everyone come with quirks or baggage that can be stressful at times? 

So far, I’ve told A, two close friends, my aunt and an unrelated support group. All of these disclosures have went well, and I’ve received support from everyone. In other words, as much as it will hurt if someone does reject me for being an Aspie, there are still plenty of people who see me as the same person I was before I told them. 

Having said all of that, it’s still not any easier to come out to someone as an individual with Asperger’s. I’ll be happy when this process is finished.