Beyond Awareness

The last few days I have struggled to try to understand a lot of feelings that have been washing over me. I have felt increasingly frustrated by the lack of understanding about the nature of Asperger's that I see exhibited by the parents of aspie kids and the autism researchers. It seems that we have finally achieved "awareness" about ASD, and I guess that is good. I fear however that awareness is not far enough. It seems that after awareness, acceptance is needed. As I have often said, I don't believe that it is productive to try to cure autism; autism should be celebrated. I am autism... and autism is part of my very person-hood; autism and I are inseparable. Accept autism, and you accept me; reject autism, and you reject me.

I find that people assume that I dislike Asperger's. Actually, I do not mind it... unlike the distractability that I face from ADD, the traits of Asperger's give me far more pleasure than pain.

As I have also discussed, some of us feel that we are pushed by the normal people around us to accept that we have a disease, a disability, and the idea that we need to become more "normal". We feel in this line of thinking that the NT's around us do not grant us full humanity, and that their efforts to make us more normal are efforts to "restore" our humanity. All of this is part of the lack of insight about ASD that frustrates me. I do not understand how many researchers and parents have been around us for decades, and yet still miss basic truths about the very nature of autism.
ASD is really quite simple; it is a condition, not a disease. Asperger's does not kill or maim, it is not progressive, and harms no one. Autism is a difference in thinking, not strictly a disability. When we use the term disabled, we infer that ideally, that disabled "something" should be fixed. When something is part of my very being, my humanity, and you call it a disability, it makes me less human. I resent that some say might dare to say that I, the person Calvin Johnson, need to be fixed. Just as insulting, many parents are convinced that it is a deep hardship and burden to have an aspie kid. I could take you to any number of websites where parents log in to moan and cry about their ASD kids and play the hero for being so noble as to love these unlovely kids. This makes me deeply angry as I realize not only that they misunderstand and don't appreciate their kids, but that they consider me to be a flawed human also. If one is trying to research ASD it becomes painfully obvious that these kind of feelings, that Aspies are somehow "flawed" and need to be cured, are very widespread both among parents and teachers.

The other day I made an educational mistake; I expressed these raw emotions to a group people in a Facebook Asperger's forum. You see, I was sick of seeing parents of Aspie kids misunderstand their kids. It is inconceivable to my curious, analytical, and sometimes robotic mind how anyone who had raised a child with Asperger's to near adulthood or researched it for decades could misunderstand Asperger's unless they didn't want to understand it. Alas, I was wrong, and I should know better. The reaction I got was quick and (for the normally mild-mannered group) quite harsh. I was told by the parents that they felt judged...

I don't want to judge, but I am sick of seeing Aspie young adults treated without respect. Before I vaguely say "I see it all the time," let me show you a few anonymous Facebook posts by young adults asking for help:

"My parents call attention to anything I do that is "strange" even in my own home, like walking funny, or mumbling, etc."

-18 y/o boy

And how about this longer one:

"I was diagnosed with Asperger's when I was 17. It was my first year of college. I am now 24 and my parents still deny I have Asperger's. My mom, specifically, thinks I am just retarded. She tells me what to wear, what to say, and what to do. When I ask her if she thinks I am retarded she gives me a nod and a look indicating that she does. A few times she said I needed to be put into a hospital because I am not "normal". She also has to point out all of my flaws, which she does practically everyday. "You don't smile enough." "You are so ignorant. you couldn't even say hello?" "Look at them when talking." "Can't you speak more quiet and soft? Your voice is giving me a headache." "You are speaking too fast. You need to learn to speak slower so people can understand you." "Why can't you dress like everyone else?" "No wonder you can't get a job. You can't do anything right." When I tell her how she makes me feel she gets upset, an argument starts, and she claims to be having a heart attack. My dad always takes her side. When I try to remind them I have Asperger's and try to explain it to them my mom is the first to respond. "Don't tell anyone that! Everyone will look at me and feel sorry for me!" I don't know what to do. How do I make them understand and treat me with respect?"

Before you dismiss these cases as uncommon and tell me that these are uncommon cases and that no parent you know would act that way, let me assure you that these are not isolated instances of rogue parents. Among my Aspie friends who are young adults, their parents are often judgmental  critical, and often tell them things like the above post. Many of my Aspie friends that are young adults are hurt frequently by their parents lack of understanding and these continuous negative comments made by family often cause them depression and anxiety. Even one of my family members complained to me that my mannerisms "bothered him and ruined the atmosphere". When I pressed as to what I could change, he grumbled about a few non-specific things and alluded that it was just "something about me". Ya I know... that something is called Asperger's. Sadly, it seems that frequently our own families are unable to accept us. What is sad is that in many of these instances the problem is nothing more than the fact that the NT person does not like the way we do something.

Loneliness is a problem for the person with ASD not simply because I cannot communicate, but because even when I communicate, others frequently cannot relate to what I am saying.

So what is a disability, and why is Asperger's considered one? In a blog, a person with Asperger's who is from New Zealand says "I am endlessly fascinated by the idea that many professors, computer geniuses, mathematicians, teachers and physicists are aspies and yet Aspergers is viewed as a disability. Society says we are other than the norm, but chooses not to use the word difference. The autistic spectrum is a disorder according to the bio-medical model." This blog focuses on the way the author feels that society makes that person with Asperger's feel less human by focusing on disability instead of understanding a difference. I have often wondered what would happen if we called non-musicians  "disabled" in the sense that they have a "sensory deficit" that does not allow them to understand and play music. I could even cite similar reasons to believe that NT's suffer from a disability that makes them illogical and emotional. Of course, this would merely be using a flawed model of disability. To believe that the idea of disability is a better description for autism then neurodiversity and difference, is to ignore reality. Like most Aspies, I even have many areas of skill that are pronounced. Strangely, I think that people tend to believe that these skills are in spite of ASD; in reality, these unique skills are not in spite of ASD, they  are because of ASD.

It is often said that the autistic person has no empathy. Nothing could be farther from the truth.

If their is any aspect of Asperger's that is a disease or a disability, it is the interaction between the autism, and the normal social and cultural environment. In general people with asperger's get along quite well with other adults with Asperger's. It often is a often the inability to find suitable and accepting friends, not an inability to socialize. Read correctly, this means that any disability must be thought of as an interaction, not as a disease. This fundamentally changes our view of Autism.

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.