The Reality of My Life with Autism

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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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Confusing Others by Showcasing Aspie Traits

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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.

When Family Doesn’t Understand 


I have been fortunate enough to have almost everyone in my life say the right words and support me since finding out that I have Asperger’s. However, my father has said a few hurtful things and seems to be unaware of how his words impact me. 

When I told him, his initial reaction was “what the fuck?” This brought up memories of the day when I told him that I’m gay. His response was to cry and then try to tell me that I couldn’t be gay. 

Even though the first thing that came out of his mouth about Asperger’s was less than supportive, he went on to say things everyone in my position wants to hear. Things such as “this doesn’t change anything,” “I’m there for you,” etc. 

Unfortunately, his actions didn’t live up to those words, and it took more than two months to get him to have another conversation with me about everything. During which, he spent most of the time talking about the issues in his life that made him mostly unresponsive for 8+ weeks. 

I would have been understanding of his difficulties and been more or less willing to move forward with no hurt feelings if he hadn’t said one key thing. When telling me about another person he met with Asperger’s many years ago, he said that he knew “something was wrong with him right away.” Um, what? He was talking to his daughter with Asperger’s and tried to relate by saying the word “wrong” in relation to another Aspie? 


I quickly said “different, not wrong.” He didn’t even seem to take that in for a few seconds, and then he replied “oh yeah.” 

Later in the conversation, I tried to educate him about all of the strengths associated with Asperger’s and how much it has impacted who I am as a person. He seemed surprised to know that there were strengths, even though I sent him information about this topic two months ago. 

This is disappointing, infuriating and heartbreaking behavior. First, he basically blew me off for two months, and then he made his ignorance about the topic very clear. There is nothing “wrong” with me. I tried to explain that it’s like having a different operating system (the Mac instead of PC analogy), but I honestly don’t know if that really reached him or made sense to him. 

Sigh. I understand that everyone has to figure things out for themselves and that there can be some emotional adjustments necessary after finding something like this out, but I wish he would have done some of that work during the past two months. I also wish he would have been thoughtful enough to not refer to someone else’s Asperger’s as something that was “wrong” with them.  

The Official Diagnosis 

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Getting an official Asperger’s or ASD diagnosis is surprisingly difficult for most adults, especially women. In my case, it took a while to find a counselor/social worker who has any adult Asperger’s experience and was also willing to see me. After I did, though, my counselor almost immediately verbally acknowledged my Asperger’s.

When this happened, I felt validated, liberated and a bit scared. Before I knew what was happening, I had an official diagnosis. However, we didn’t actually discuss this diagnosis until I saw it on my insurance provider’s website.


It was very jarring to get the news this way, but I’m not upset with my counselor about it. I already knew I was an Aspie, and she’d already made it clear that she agreed. Somehow, though, seeing it officially in writing brought up a lot of emotions.

What I dislike about having a diagnosis is that this can be used by others to label me as “disabled.” But I’m not. I can live independently, I have a job, etc. My quality of life is much better with some assistance and accommodations, but this is not necessary for me to survive.

I also hate the ridiculous social stigma. It makes me angry that people use autism as a joke in books, movies, TV shows, etc. and that some online gaming groups put “no autistic kids” in their rules. That’s bullshit.

On the other hand, I’ve always thrived on advocating for important social causes. Back in the early to mid 1990s, I helped teach a lot of people in a small-minded town about the fact that gay people are just like everyone else. Now, I see my recent discovery and diagnosis as an opportunity to educate people about autism. 

The fact is that I do not feel ashamed to have Asperger’s, nor should any other Aspie. Asperger’s has had a huge impact on who I am and how I’ve lived my entire life, and I like who I’ve become. There were many unnecessarily difficult times in my life because I didn’t know I was an Aspie, but now that I know, everything has gotten much better.

Ultimately, the official diagnosis did nothing more than confirm my truth. I am autistic. And there’s nothing wrong with that. Anyone who thinks differently is simply putting their ignorance on display.

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

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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.

Apologizing for Apologizing 

  
I have spent my entire life apologizing for one thing or another. Most of this is because my emotional reactions to situations always seemed abnormal, which made me instantly feel sad and remorseful, even when I hadn’t done anything wrong. 

Lately, I can’t stop apologizing for apologizing. A tells me all the time that I don’t need to say I’m sorry for the things I say or do that aren’t bad/wrong/hurtful. My reaction? “I’m sorry.” 

I’ve recently realized that I’ve been apologizing my whole life for my Aspie traits. Having a meltdown isn’t my fault, nor is the way that I process things. And yet I can’t stop apologizing, which is then followed by another apology. 

When something happens that brings out one of my less desirable Aspie traits such as being unable to turn off the negative soundtrack in my head, I feel like I’m insignificant. My cheeks get hot, and my stomach gets tight. I instantly feel sad and have the urge to cry. All I want in those moments is for it all to be taken away and to stop being so different from others. So I apologize for myself and my behavior, and this makes me feel even worse. 

I know that I need to be more accepting and compassionate to myself, but that’s not easy after 38 years of being trained to hide or apologize for things such as my social awkwardness and heightened emotions. Even worse is the fact that now I’m so hyper aware of my Aspie traits that I feel even more compelled to apologize. 

I realize that I’m actually apologizing for the way my brain is wired, and that makes no sense at all. It’s like apologizing for having green eyes and brunette hair. 

I really need to learn how to let myself be a person with Asperger’s during the good and bad times without constantly apologizing for everything that comes along with it. After 38 years and a lot of self-work, I’m still reacting to some things the same way, so that’s clearly part of my Aspie nature. Now if only I could stop fighting it and be more understanding of my own natural quirks…