REBLOGGED: Advice for counselors / therapists / professionals working with Asperger’s / autistic people

I am fortunate to have a social worker who has a good understanding of adult Asperger’s and treats me with respect and compassion. The information in this post is solid and could be helpful to any professional who works with people on the spectrum.

the silent wave

Nope, that’s not a typo.  Nope, I don’t have a psychology degree or a counseling license.  That probably looks like I’m stepping out of bounds here.  Or at the very least, I’ve got b@lls, which sometimes get me in trouble.

A psychologist, counselor, therapist, doctor, or other professional reading this might be smacking his or her forehead and saying, “where does she get off, telling us what to do?”

I’ll answer that.  Rudy Simone writes in her book “Aspergirls” that people on the spectrum are true experts on the subject; after all, experience is the best teacher, as they say.

I’m not writing this post for me.  I’m writing this to advocate for others out there who may have had (or may currently be having) unproductive or even painful or counterproductive experiences.  I’m writing this because, tragically, it’s necessary.  Too many Asperger’s/autistic people, especially females, have told or written about…

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REBLOGGED: Positive aspects of Asperger’s / autism

the silent wave

When searching for traits, characteristics, or symptoms of Asperger’s (and the rest of the autism spectrum, to an extent) online, the first–and the majority of–information you’ll probably find focuses on the negative aspects, at least as perceived by the “official sources” and “experts”.  It begins to sound like a broken record… “lack of empathy”… “rigidity”/”cognitive inflexibility”… “clumsiness”… “obsessions”… “developmental disability”… “socially awkward”… “inappropriate [fill in the blank]”… “impairments”… “unemployment…”

Good lord.  If the “rest of the world” sees us that way, refuses to recognize or acknowledge our positive traits, and treats us according to their exclusively-negative stereotype (if they have even formed an impression of us beyond the “Rain Man” stereotype at all), then no wonder that people on the spectrum experience higher rates of depression and self-harm.

It’s time to balance out the equation.

I’ve touched on some of these concepts before, in passing, but it’s time to dedicate…

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The Reality of My Life with Autism


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.

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 Therapeutic Benefits of Pokemon Go

Pokemon Go has become the most popular app in the world, but there are still many people questioning why adults would get involved in this type of game. The answer is simple: it’s exactly the type of escape that we all need.

The past couple of months have been really difficult. Between the shooting in Orlando and the almost daily reports of police violence or incidents at protests, it’s way too easy to get wrapped up in miserableness. When you combine this with a couple of recent horrible news stories about autistic individuals being mistreated, the news has become something to dread. 

As a lesbian humanist with Asperger’s, I have been appalled and greatly saddened by everything going on. So much so, in fact, that I couldn’t bring myself to blog about it. However, a few days ago, a wonderful form of escapism arrived: Pokemon Go. 

I resisted downloading the augmented reality game for the first three days because I didn’t think I’d like it. When I finally decided to check it out, though, I quickly became hooked. 

Suddenly, I found myself wanting to go to places where other people are in order to visit Pokestops and find new Pokemon. This led to increased exercise, more socialization than usual and a feeling of community that is very rare for me. 

Pokemon Go gets people to explore new places. It is helping businesses, and there have already been several positive reports about the impact it can have on the mental health of each player. Of course, there have been a few bad news stories too, but the majority of interactions between Pokemon Go players appear to be overwhelmingly positive. 

It wasn’t a big surprise when I discovered that the original creator of Pokemon was diagnosed with Asperger’s syndrome. The collector mentality, along with the bond between humans and their Pokemon, is very much in keeping with some of the most common Aspie characteristics. 

I like staying up to date on national and international news, and I believe that purposefully remaining ignorant about all of these things is one of the worst things someone can do. With the way the past two months have gone, though (and it’s really been more like the past year), I’m going to take a little while to enjoy the respite that is offered by Pokemon Go. 

Feeling Misunderstood Because of a Meltdown

Having a meltdown is one of the worst feelings in the world. It feels like my brain is on fire and the world won’t stop spinning out of control. Having these is bad enough, but it’s even worse when I end up feeling completely misunderstood because of a meltdown. 

Every fiber of my being wants the meltdown to stop as soon as it begins. I don’t feel like anyone who doesn’t have meltdowns understands that. Instead, I hear phrases such as “calm down” or “you don’t have to react like this” or even “you have control over this.” But the truth is that I don’t have control over it, I can’t calm down and it’s quite simply the way my brain is reacting to something. 

I’ve implemented a sensory diet that helps me minimize my meltdowns and gives me more space between them, but it’s not a perfect system, especially when I have so much going on that I can’t always follow it as well as I should. 

When I have a meltdown, I really just need to feel safe and understood. For reasons I won’t get into here, I end up feeling extremely scared and vulnerable during and after a meltdown. These feelings are exacerbated when the meltdown is accompanied by tension and a lack of understanding. 

I know it isn’t easy for others to deal with my meltdowns, but it’s just as hard on me, if not harder, to have them. I’ve been told that I’ve had more frequent meltdowns since finding out I have Asperger’s. I used to really struggle until I’d end up crying for hours when no one else was around. Now, more of that is being shown to others, but I feel like perhaps I should do everything in my power to stuff it back down until I’m alone. 

Doing that in the past always came with a huge toll, though. I was depressed more often and for longer periods of time. I also felt almost constant tension in my body and pain in the back of my neck. I don’t want to feel like that anymore. I just want to feel understood and loved, even when I’m not at my best. 

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 


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.

REBLOGGED: If the world was built for me

This is a spot-on explanation of the many little changes that would make the world much more sensory friendly.

Autism and Expectations

If the world was built for me. There would be nothing wrong with me. I would be happy and safe and certain and successful.

If the world was built for me, when I met people there would be no expectation of physical contact or small talk. We may ignore each other, with a socially acceptable nod, or throw ourselves into a deep and meaningful conversation.

If the world was built for me, then we would all sit next to each other, not opposite. Things would be based on literal words, not guessed expressions and gestures.

If the world was built for me, there would be a compulsory day off for everyone after any social event. Just so we could all take the time to recharge and process things.

If the world was built for me, work would be about working and nothing else. There wouldn’t be the necessary interaction that…

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