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. 

Getting Validation from a Therapist 

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I previously wrote about preferring online therapy, but certain recent events in my life made me want to give in-person therapy another try. A couple of months ago, I tried to connect with a psychologist who specializes in adult Asperger’s, but she was less than helpful and wouldn’t make time to see me. Fortunately, I finally found someone who has experience with adult Asperger’s and is actually really easy to talk to.

The most monumental thing about this is that after talking to me for a short time and asking a few specific questions, she began making comments such as “with your Asperger’s.” I didn’t really need that official confirmation to know I’m an Aspie (especially because a social worker friend of mine agreed that I’m very Aspie), but it was still very liberating and validating to have a professional recognize it almost immediately and begin making strides toward helping me.

I’ve also officially come out to everyone as an Aspie, and the response has all been positive. When you combine this with the love and support of A (my wonderful fiancée), I’m feeling much better about so many aspects of my life. The truth really will set you free every single time.