Asperger's and the Human Essence

Most individual's whose thought processes have been formed in a Western cultural tradition would agree that there is some essence of 'human-ness' that every human contains.  This essence, often called the human spirit, is something that transcends disabilities, intellect, and race or gender. It is often looked at as something sacred or invaluable in both religious and humanistic schools of thought. If we acknowledge these ideas about the human essence, then an interesting question presents itself:

In individuals with Asperger's, is the Asperger's part of them an essential part of the human essence, or does it take away from the human essence?

This question is at the heart of many debates in the Asperger's community. It goes back to a search for exactly what Asperger's and Autism are, and aren't, as well as the discussion of whether it is a disability in the classic sense or not. Sadly, this is not as straightforward of a question as it would seem to be. Many authors and even experts seem to misunderstand autism, and many obvious features of autism are ignored in most research. I believe that much of these problems can be traced to three related issues:

• Autism research is usually conducted by neuro-typical people with little regard for the opinions of autistics on the experience of autism.
• The primary researchers doing autism research are psychologists and neuro-scientists whose training has prepared them to see what is not normal as a 'disability.' If the research was conducted in a more anthropological way, then maybe the cultural side of Asperger's would be distinguished from the disabilities.
• Most of the research focuses on low-functioning autistic children. I believe that this is because to a person schooled and interested in studying disabilities, that this group is far more interesting than the adults with very high functioning Asperger's that are hardly as disabled as they are different.

All these problems prevent the widespread understanding of what autism both is, and isn't. This leads to much frustration, lost time and talent, and even depression for the individual with Asperger's. Because many autistic people are respectful and try to listen to their elders and experts, many autistic people waste years of their lives trying to follow ill-thought advice. Ultimately, autistic people often realize to late that you cannot shove a square peg into a round whole without ruining the beautiful shape of the original peg. Sadly, for me and many other autistic people, the feeling of being a square peg or a black sheep is all too familiar.

What Asperger's is and is not

With that background, let’s be clear about what autism isn’t. It isn’t a mental illness, it isn’t a personality, and it isn’t a talent. It isn’t a lack of emotion, or lack of empathy or some kind of anti-social tendency. Autism isn’t purely just a disorder or just a disability either. Autism is something deeper. While an autistic person is often disabled in some area, say in reading body language, they are often extremely talented in some form of symbolic language or art.

Personally, I think that while autism might be broadly considered a disability by the mental health community, it is a much, much, deeper part of the person than that. Most high functioning Aspie's that I know have no desire to be "normal" or neurotypical. They do not suffer inside from Asperger's like sufferers of mental illness do. They instead suffer when others do not understand them and discriminate against them. The suffering of Asperger's is in the interaction of the person with Asperger's, and the rest of the population. This is not unlike the suffering of someone from a cultural minority. I think that the person with Asperger's can be dealt with and helped in many of the same ways that any minority group can be helped. By understanding that Asperger's is a part of the person in a sense not unlike culture, we avoid many of the pitfalls that people connected to the Asperger's world often fall into.

Asperger's is not a culture however; we don't choose to have Asperger's, and we cannot choose to change our identity away from Asperger's to another identity. In fact, the whole idea of Asperger's being like a culture is maybe a worthy allegory but it is not the underlying reality at all. While using culture as a comparison to Asperger's may be helpful, other allegories work just as well, maybe better. Culture is to much an exterior part of the person to be like Asperger's; the reality is it is a deeper part of us, maybe like our sexuality. Even when I do traditionally feminine tasks, I do them in a masculine way because I am a man. Even when a gay man is married to a woman, he still seems gay. In this way sexuality is a deep part of us in a way that is impossible to change. I believe that Asperger's is likewise a deep part of us.

Another allegory that is fitting here is someone who is a true artist. We all know that for artists and musicians, their music and art is a part of their very person. Anyone that has ever known an artist knows that if you took the music away from a musician, that a part of that musician's very person would cease to be.

I think that when we speak of sexuality, or the part of a person that is a musician, that these parts of the person are deeper than personality; autism is the same way. I think that for these traits, the best analogy is the type of operating system that a particular computer runs. Just as some computers run Mac, some Windows, and some Linux, it seems that some people's operating systems are male, some artistic, some female, and some autistic. As such, I believe (as do many others) that autism is connected intimately with the person-hood of the individual with autism. While personality differences between people often account for how two people perceiving the same thing might react differently. Autistic people perceive the world in a fundamentally different way than neuro-typical people, corresponding to a much deeper reality than personality. I’ve met introverted and extroverted autistic's, and in general, I think that the autistic person doesn’t have any one prevailing personality once you get to know them. While the expression of these personalities is affected by the underlying ‘Operating System’ of the autistic mind, the personality is unchanged.

As I said before, autism is connected intimately with the person-hood of the individual with autism. As such, to ‘cure’ my autism would erase me. I don’t want to be cured, and I think that it is misguided to want a cure. To want to ‘cure’ the autistic is to tell them that they as a person are defective in the very conscious being that is them. While I do not think that it is wrong to say that a person has a disability in the physical body they inhabit, it is deeply hurtful to infer that a person is defective in the conscious human essence that is them. Autism is deeply a part of this essence in a deeper way than even personality is. It is only once you understand this that one can really understand and begin to work with autism.

Imagine someone suggesting that musicians needed curing of their music?

Conclusion

Asperger's, Autism, and high functioning autism affect the person that is diagnosed with them at a much deeper level than a disease affects a sufferer. Asperger's is a part of the very human that carries it, and just as we would never talk of curing a musician of their music, so similarly, talk of curing the AS person of their Asperger's is less than helpful.

Understanding that personhood and Asperger's are connected should help the people both with it to accept themselves and also should change the way that loved ones, family, professional caregivers, and others understand autism. This realization has been critical to how I view myself, and has been healing and the greatest blessing to me. 

Frustration, Anxiety, and Asperger's

Today I saw a post on one of the many Asperger's/Autism Facebook pages. This post got me thinking about frustration in ASD people, and I thought I'd share my insights (or lack thereof!!!). Here is the post:
"Question, how do you deal with a 10 year old aspie quick temper over who knows what, all the time. Who is the best person to see. Ot, psychologist, gp. Where's the best place to start. I can't get through to him. I'm very new at this."

Well, loudmouth me, I had to respond. I'm always amazed that parents and family members are so unnerved by the rare emotions that Aspie's do show... I thought they wanted to see more of our emotions!?! Here was my reply to that post:

"As an Aspie adult with an Aspie girlfriend and many Aspie friends, I am very familiar with these issues... many Aspie's have "quick tempers".
My view may not be popular to an NT parent that wants a quick fix... it is however I believe the truth. The question to ask here is "why is my kids life so frustrating, and what frustrations can I fix?"
Aspie's don't have temper issues per se, we have different expectations in life than many NT people. Let me give you an example. Imagine that the world was flipped and 95% of people were Aspie and you were part of the NT minority... and the Aspie's around you constantly berated you for your lack of logic and your need to socialize constantly. In a world like that, most NT's would develop temper problems.
Now I am not saying that the parents in question are expecting to much from this kid; I don't live at home so my parents aren't at fault but the way that the world constantly pushes me is hard to bear some days. I kinda freaked out the other night after a bad day at work, it was only after talking to my understanding girlfriend for quite some time and holding her close that I calmed down. Did I have a temper issue that night? No, I got fed up with an unfair world trying to force me to be like them, instead of celebrating me.
Aspie breakdowns like I had the other evening look unpredictable to many NT's. They don't see that behind what ever issue tips us over the edge, are many other real issues we have been carrying with us.
I hope this may help you see through an Aspie's eyes."-Calvin Johnson 

I have yet to see any "likes" or comments on my response. I'm amazed that when I post replies to parents questions about autism, I frequently get ignored and occasionally get hostile replies. In contrast, I often see parents getting 3-10 likes on a post where they are perpetuation wrong views about autism, or feeling sorry for themselves and trying to play a hero for putting up with their autistic child. I get frustrated that so many neuro-typical people see to not understand the problems faced by people with Asperger's. I mean, I guess we can't blame people too much, but at times I wonder why it is so hard for NT's to empathize with people with ASD. Many neuro-typical people and especially parents seem to not understand, and some seem to not want to understand, the problems faced by people with Asperger's. I mean, I guess we can't blame people too much, but at times I wonder why it is so hard for NT's to empathize with people with ASD. I know many parents are not this way... and I praise you for your wisdom. Please educate your fellow parents of ASD people on how to think about ASD in an enlightened way!!!

Working with anger and anxiety in the ASD population is simple in theory. Look at the root causes of anger, anxiety, and frustration in the person with ASD. Often, being understanding is all that is needed to calm down an autistic person... and don't expect us to calm down quickly. We obsess... on good things, and our frustrations. Here are a few tips to dealing with an autistic adult that is upset... I'm sure that many of these apply to kids too.

The logical, algorithmic,  and orderly world of programming is a great escape to me when I am upset or anxious.  Life is as it should be when I am coding; intelligence is rewarded, and stupidity is punished. The compiler does not assume it knows what I want, and if I have been unclear it complains. The process is logical, and the results both predictable and rewarding. Programming often calms my mind, and makes the world right and a worthwhile place again.

• If the person is upset, realize that they believe that their frustration is logical and reasonable. Find a way to agree with them, and let them know that you feel that their frustration is warranted  Their is nothing I hate worse than being told that my frustration is illogical; when someone says that, I feel unloved, misunderstood, and like the person just called me stupid. Only a stupid person would be upset by something unreasonable.


• Realize that even if the frustration IS reasonable, the amount of frustration may not be reasonable. Sometimes I get in a tizzy about something that in the bigger picture, is not a big deal. Again, let me know that you understand my frustration and agree that it is a valid frustration. Be empathetic. Maybe if you are close enough to me, hold me close. Some autistic's enjoy touch as a way of showing non-verbal affection, some do not. Be affectionate in whatever way that the person likes.


• Don't expect, or demand me to "get over" something in ten minuets. If I have a right to be upset, let me be upset. It is ok to be upset... relax NT's and let me get past it in a few hours. 


• Sometimes when I am upset, the best thing to do (once I have realized that I cannot solve the problem) is to get engrossed in something else that I get obsessed with... for me, that means coding a computer program, etc. For my girlfriend, that might mean watching Anime. For my friend, that may mean spending time in the Volvo forums helping other Volvo enthusiasts fix their cars and turn station wagons into race cars. Whatever works...


• Alone time can work wonders for some of us... use it.


• Realize that the anxiety that many people with ASD face is a logical result of continuous surprises and discrimination when dealing with the world.


• Treat anxiety with anti-anxiety meds like Paxil if needed. They help


• If you have upset your loved one with ASD, let some time go past before expecting them to forgive you and move on. I waited 3 weeks once to apologize to a friend that is Aspie... and the relationship was restored. Give the person time to cool down and put the situation in perspective before moving on.

My Personal Problems with Anxiety

Like many with Asperger's, anxiety is also an issue for me. Anxiety seems to be a much more acute issue for the highest functioning autistic individuals. I think those of us that are higher functioning are less oblivious to the social rejection we face, and that makes our anxiety far worse than those that are lower functioning, and hence are less aware of the rejection they face. Also, people are much kinder to "obviously handicapped" people then to people that look normal but are "weird". I am learning to be aware of how anxious I am, and to know when my anxiety levels are increasing; this is not easy for me either, but I am getting better at it. To manage the anxiety I have a several pronged strategy. 

• First of all, I try to keep my work load between school and work balanced. I tend to overwork myself, and while this is deadly, too much free time without anything to do is even more stressful. 
• The second prong of my strategy is physiological. The endorphin release from exercise is a proven natural anti-depressant, and helps reduce the overall physiological stress load in the body. To take advantage of this, I work out regularly. The point is to do semi-aerobic type exercise, get my heart rate up to 130-160 for a half hour or so three times a week. This is huge for me and I feel a lot of release after working out although I have to force myself to go to the gym. 
• My third prong is too be willing to get pharmaceutical help when needed. I use the help of medications if and when I need it to help me to manage anxiety and ADD symptoms. I also enjoy the companionship of my local autistic support group and am part of several on-line groups through social media.

I also have learned that I need both solitary and social ways to unwind. I am learning that I need to do something extra in the evening 3-6 evenings a week. I spend time with friends, am taking up a musical instrument and going to jams to practice. I've also started following several local bands and have become good friends with the musicians. By accepting and understanding who I am, including the anxiety that I have, I have been able to grow and am much less anxious than in the past.

In conclusion, I hope that this short bit of personal opinion can be useful. I hope to that you good NT's out there understand that I appreciate you even though I have occasional frustration with some NT's; I know many of you try so hard!!! I am always learning and am not arrogant enough to think I have all the answers; I merely have a little bit of personal experience. I would love to hear from you and find out what works for you... Do you do special things that help anxiety or frustration in yourself or your kid? What are they... I'd love to learn. Post a question or contact me and give a suggestion. I may even add your suggestion to an updated version of this blog post.

*NOTE: I fixed some spelling and punctuation errors in the original Facebook posts.

The Journey of a Misfit

Several years ago my life simply didn't make sense. No matter what I did, I simply didn't fit in. I knew I was intelligent, hardworking and somewhat adventurous; yet, despite my best efforts at being nice and friendly, I struggled in social settings of all types. I had trouble at work, few friendships, and couldn't make sense of dating. I lost several jobs, had multiple social issues that were usually low intensity but were often devastating emotionally and financially. I struggled with feeling rejected especially anytime that I found myself in a relationship with a young women. I wanted to be liked and loved and be a ladies man, but I couldn't figure out how to make sense of relationships no matter how nice and friendly I was. To make it worse, I was “overly logical” and interested in things that others frequently were not interested in.

As time went on, I was becoming increasingly isolated. Even though I had known that I had ADD for a long time, this certainly did not account for all of my issues. I seemed to be learning to manage my ADD better as I grew older, yet despite that, most of my issues seemed to be getting more obvious. I was getting very depressed as I began to despair. Ultimately, this became an increasing source of rage and frustration in my life that threatened to overwhelm my life. Nothing I was doing worked-I was a misfit. I was a misfit and I did not know why or what to do about it.

To be clear, I was not a complete failure nor was I an unhappy person. I had many, many hobbies and interests, and enjoyed them all. I had some friendships that were left over from a brief happy period in my late teens when my social life seemed to go well... yet these relationships were becoming less satisfying as these friends grew up, married, and began to have kids. Meanwhile, I seemed to be getting more and more awkward around women.

More frustrating than even the social problems I was having, was the fact that no one seemed to understand what was happening in my life. I was taught to look up to elders, and so I went to to all my friends and many church and community leaders for advice. I was told to be patient, that I was rebellious, that I had “spiritual problems”, that I needed to learn to “get along with people”, that I was “unstable”, and that life and my social skills would some day get better on its own. I tried all the advice with sincerity; however, as time went on the advice became more vicious and people seemed to tell me that something was wrong with me with growing conviction. I knew I wasn't lazy... Even though I was a night owl and the early mornings were not easy for me, I worked 60-90 hrs a week most of this period on a farm. I knew I was a deeper thinker than some and questioned everything but this did not seem bad. I had been patient, and life was getting worse... I was sliding deeper into depression and did not understand it.

During this time period I decided to switch my employment from agriculture to EMS, and found that I had a gift for working well under pressure and for understanding human anatomy. I progressed quickly in EMS and despite social issues with coworkers I did fairly well; during this time I assumed my social issues were the result of being raised in a backwards rural community. This however began to break down as I became fairly street smart but continued to have problems. I then concluded that I simply had a little trouble reading body language.

Also significant during this period, I was introduced to computers and programming and became obsessed. I learned Linux and began to mess with coding for fun. Little did I know that my life was following a common pattern. People with Asperger's often are drawn to computers.

After some time, I began develop friendships with a few "misfit" friends. During a long conversation with one of these friends, I realized that I needed to look at Asperger's or high-functioning autism as a possible answer. A few short months later, I was evaluated for autism spectrum disorder by a psychiatrist. I found out that it appears that I fit the profile of a person with high functioning autism spectrum disorder (ASD), also formerly called Asperger's syndrome. The psychiatrist did not have the courage to straight out say that yes, I have ASD, but he told me I fit the profile. I'd like to have a more official diagnosis, but mental heath-care in this country is both expensive and terrible. Because of the cost, I have simply realized that understanding that I have Asperger's is an incredible insight that I have used to move forward in life.

I will never forget the relief that I felt after I found out that I had autism; this insight has helped me to understand myself and brought healing in my relationships and life. The period since I’ve been diagnosed has been an extremely productive one in my life, with an unbelievable amount of growth. It was one of the most healing, painful, and most meaningful revelations of my whole life. I have found it healing to realize that I am not weird, even if I am different than most. I have begun to realize that I am not broken or diseased either, but that people with ASD like myself tend to think, act, and communicate slightly different than others. I came to realize that many of my traits, are normal in the autistic community. Like many autistics, I have high intensity, and make frequent social blunders. I am obsessive with studies of absolutes like math, computers, and science. When I communicate, I am blunt, logical, and honest. I found out that even my enjoyment of Sci-fi and star wars are almost stereotypically autistic. It feels good to finally know I fit in, even if the group that I fit in to is by definition weird; even so, it still feels good to finally fit in, and I have even found some groups of autistic adults that meet to socialize and share.

By understanding how different I was from others, and that I am not "weird" or "broken", I was able to forgive many people, especially women, for misunderstanding me. This has been quite healing to me, and helped me to become more healthy emotionally and spiritually. I now realize that it was inevitable that they would not ever have understood me, and that the fact that they didn't was not really rejection at all. They simply couldn't have understood me. This is also true of my parents.

Finding out that I have autism, however, has not been all roses and encouraging. Realizing that there is something very specific that is different about me, and that I will never be able to change that, has been very overwhelming at times. Most disappointing has been discovering that there is a lack of research and literature about adults with autism. 

Despite learning a lot, ASD is still very stressful. One of the one most difficult things about ASD is realizing that no matter how much I learn, I will still face social challenges that will be stressful. I will lose relationships, miss promotions, and my GPA may lag behind my effort and intelligence. I will often be managed, bossed, and judged by people who are inferior in knowledge, intelligence, and skill level to me. This is not about being negative, but about realism; I must accept where I am in life, and what I can realistically expect. I must anticipate challenges, and make plans to avoid them. The more I learn, the more I plan, the better life will be.

I try to make a conscious effort stay upbeat, and take care of myself. It is important to for me to manage my stress levels from these challenges. I can do that in many ways. I've learned to understand that like many people with ASD, I often lose track of their own emotions as well as those of others. This realization has helped to make me more aware of my lack of understanding of myself at times. I have come to realize that I often do not know my own emotions, and that talking about them, writing down the feelings that I don't understand, and having supportive, accepting friends to bounce things off of is essential to me. Autistics have a tendency to self isolate; not only do they not realize or understand their social needs, but they also become scared of social interaction because they are so often misunderstood and heckled. I spend time with positive and intelligent friends (some who also have ASD) several times a week.

I also have learned that I need both solitary and social ways to unwind. I am learning that I need to do something extra in the evening 3-6 evenings a week. I spend time with friends, and am learning to play the bass. Taking up a musical instrument and going to jams and lessons to practice is something that builds friendships with musicians, builds eye-hand coordination, and I've found that musicians are often great friends to Aspie people. I've also started following several local bands and have become good friends with the musicians. In short, despite all of the challenges of ASD, today I am happier than ever before; I am more productive, have a larger social circle , and a better understanding of myself and others. By accepting and understanding who I am, I have been able to grow.

         In writing a blog about my experiences, I hope to be able to encourage other adults with high functioning autism and Asperger's. I also hope that I can be of help to parents that have kids with ASD, and that through my voice they can understand their kids better. I know that sometimes I will write in a level headed way and have good advice, but in other posts my frustration may be seen. I hope that in each post I can be kind and charitable, yet honest. I hope that you will follow my blogs and sign up to receive them, and that you will post responses and questions and comments so we can all learn together.

-Calvin Johnson

Note:

        In using the term "misfit" as a description of myself and my experiences, I realize that some may misunderstand me. At times in my life I have seen this as a negative thing, but now I am happy to be myself and to grow. I am glad I am a misfit, am glad that I am geeky, and would not want to be any other way. I hope you can understand that I do not feel sorry for myself, and use this word in a liberating, humorous, and self-deprecating way.