Just What Is Asperger’s Syndrome?

         During the process of writing my book, psychiatrists in their infinite wisdom have decided to eliminate the term Asperger’s from their holy book (DSM V) of diagnoses and have lumped it in with Autism as Asperger’s is considered high functioning Autism.  While true that there are many similarities in thinking and behavior and that Asperger’s is certainly part of the autism spectrum, I believe it is also confusing to many people.  It also confuses the challenge of raising an uncommunicative child with severe  autism and the challenge of raising a perhaps over communicative child with Asperger’s.  To me this is the main difference I use to differentiate between the two: as children Autistic children talk very little if at all, and Asperger’s children can talk on and on when they are excited about something, often to the disapproval of classmates, friends and adults.

          I feel inadequate trying to explain Asperger’s Syndrome but I have been asked to include a definition for this book, so I will try.  Each person who identifies as Asperger’s or high functioning Autism is different but there are many factors in common.  It is the combination of so many markers and behaviors that lead to a diagnosis.

          In conversations with NT (Neurotypical) people I find they focus on the social inadequacies as a definition.  To me, this seems just a small part of the syndrome, though many of the parts lead to social confusion and not fitting in.  Also boys and girls exhibit different behaviors and coping strategies which has only recently begun to be defined and noticed by therapists and educators.  I had suspected my Aspie tendencies after my adult son was officially diagnosed at age 34, but it was only after reading the chart of female Asperger’s traits by Rudy Simone, available online and in her classic and excellent book “Aspergirls”, and finding out that I had almost every quality and behavior listed, that I knew where I finally fit in, after 59 years of wondering just why I was so different.  This chart has done the same for many women.  Many had been misdiagnosed over the years we knew we weren't normal but finally finding a group of women not normal in the same way was a relief and a welcome discovery of a like minded community.  Even if we are scattered all over the world thanks to the internet and Facebook groups, we can communicate and share our daily obstacles and confusions with those who understand us. 

          There are many good books about Asperger’s Syndrome available, and I recommend them to anyone who wants to understand more about themselves or loved ones.  Many people start with the book, “Look Me inthe Eye” by John Elder Robison which is a hilarious and revealing insight into the Aspie mind.  “All Cats Have AspergerSyndrome”  by Kathy Hoopmann is great for young children and adults enjoy it too.  “The Complete Guide to Asperger’sSyndrome” by Tony Atwood is a classic and contains much valuable information.  “Aspergirls; EmpoweringFemales with Asperger  Syndrome” by Rudy Simone is the classic for women and girls.  “Asperger’s and Girls” by Tony Atwood is also worth reading. 

          One of the hardest things to deal with is finding your Aspie personality and then having loved ones stay in denial, insisting you are normal, and feeling if they acknowledged this that you are somehow defective. This is so not true.  Asperger’s Awareness and Autism Awareness is looking at it as a different way of being that needs understanding, not fixing. 

          So here is my own description of Asperger’s traits and like I already mentioned, no two Aspies are alike in the way these combinations of traits and their severity. I haven't included everything, and no one has all of them.

          Social problems are what many people first think of when they hear “Asperger’s Syndrome.”  Many traits lead to the social difficulties and sense of alienation and the feeling of being from another planet.  Aspies are usually honest about their feelings, and just blurt out what they feel and notice without thinking about social consequences.  Body language seems incomprehensible and isn’t noticed.  It is also hard to look someone in the eye, which leads to being thought shifty and lying, which is the opposite of what is going on. 

          Social gossip seems boring, confusing, and hard to listen to.  When talking about our passions we can go on and on excitedly not noticing the eye rolling of NT’s bored by our talking.  And it is so easy to get excited, and our minds often go fast, fast, fast, so that we often interrupt other’s conversations and are considered rude when rude doesn’t have meaning unless taught, and the excitement isn’t derogatory to the other person, but just an expression of happiness.  But sitting in a group of people talking about things that come easily to most people we will sit in silence, feeling left out and hurt.

          When I am happy and feeling secure I talk on and on about whatever is interesting me at the moment.  I value friends who can simply ask me to stop or change the subject without judging me.  When I feel I have to watch every word I say I drift into silence and feel uncomfortable and depressed. 

          I’m not sure if the resistance to looking someone in the eye while talking to them in connected to the poor facial recognition that is found in AS in varying levels, but poor facial recognition has led to much social awkwardness in my life, and it wasn’t until I learned about AS at the age of 59 that I realized most people were much better at it than I was.  People can think you don’t care or notice them when you don’t recognize them wearing other clothes or hairstyles or in other places, and recently I had a woman get offended and call me on it when I didn’t recognize her.  Now that I know the term poor facial recognition I can admit it as part of my AS personality, and this makes me more comfortable.  I also thought everyone else was like me and would be surprised to be recognized by other people.

          There is also a tendency to think social conventions are just stupid.  This has led to me being a rebel most of my life and also to acknowledging my bisexuality. I have drifted into an alternative living style and now am only comfortable around those who live outside the “normal” range of lifestyles.  One day I looked around at all my friends and realized they were all “crazy” in one way or another and that  “normal” people bored me and made me feel uncomfortable.  The subdivision I live in now (not to be confused with the suburbs) has been called “an open air asylum” and as soon as I moved here I was told I fit right in.

          There is also poor control over body muscles which leads to general klutziness, being terrible at sports, poor facial control over expressions, and often a funny way of walking and flapping arms.  Girls are often better than boys at controlling their facial expressions, but we are often judged by not having the appropriate expression for the conversation or situation.   I loved the part in the movie “Temple Grandin” where her mother had her use flash cards and a mirror to try and have the appropriate facial expression for the emotion.  Often it is hard to find the proper vocal tone as well, and another way NT’s use to be judgmental against those on the Autism Spectrum.  I have had people who quit speaking to me because they didn’t like my tone of voice when talking about things I know and am passionate about.  This is where drama lessons can be a valuable tool, as facial expressions and tone of voice to match the emotion are essential to drama and are one of the first things taught.

          Passions and overwhelming interests and collections are also an AS characteristic.   In fact, when the AS person is denied or socially pressured into not having such passionate interests life hardly seems worth living.  The passions and interests range from what might be considered normal to odd things that especially in a young child are often bewildering to others.  One book I read for NT parents actually recommended discouraging their passions in the interest of social acceptability.  I think that is SO wrong wrong wrong.  Our passions are our reason for living, give us something to talk about, and can find us groups of people we have things in common with and provide sometimes our only friends.  These passions can also change suddenly, to the surprise of friends and family.

          Sensitivities are varied but an important component of the Autism Spectrum.  Some severely Autistic children find even low noises unbearable and the wind blowing over their skin can be painful.  Food sensitivities played an important part in my life, and for many Asperger people changing to a simple diet free of food additives and colors is often helpful.  And it changes from person to person; some foods can be okay for some and harmful to others.  Snacks are often important as going without food for long periods can cause problems and meltdowns.  

          Noises are often an issue, seeming louder and more confusing than they do to others.  A soft voice may sound like yelling, and a loud angry one can be intolerable.  Some are okay with loud repetitive music and it even helps to calm the mind, while others flee in terror.

          I have always had to wear hats and sunglasses outdoors and I blamed it on many things from time to time, but then I read a list of supplies for an AS person to take as an emergency kit, and there were the sunglasses, a common sensitivity to light amongst Aspies.  Wow! It wasn’t my fault.

          I am going to mention meltdowns now because they are directly linked to sensitivities and stress.  There are charts going around the internet now on the difference between a tantrum and a meltdown.  Sometimes from the outside they appear the same, but punishment does no good and much harm for a meltdown child.  A meltdown often occurs when sensory overload is just too much.  Being tired, in a noisy place, fluorescent lights, too many people, confusion, all lead to a state that is almost impossible to stop once the melting begins.  And one of the differences between a meltdown and a tantrum is that the meltdown doesn’t end when the situation resolves itself.  For me it can go on for hours or days.  It has been hard to explain to people that once I become terrified in cars it will last all day, long after the scary situation passes, and I won’t be fun to be in the car with after that.  And it doesn’t have to do with THEIR driving. 

          I can feel a meltdown coming on in my body, heart rate goes up, I feel dizzy; I just know I am going to cry or scream or something embarrassing.  I have tried everything over the years to not feel this way ever again, but now that I know about AS I know that I am not defective for these feelings and am becoming more aware of the situations I need to stay clear of, and sometimes can even recognize it and breathe deeply and recover faster.

         My therapist suggested that the suddenness and duration of meltdowns might have to do with sensitivity to adrenalin.  Once in the system it takes hours or days to leave, and deep breathing can help, especially at the onset of a meltdown.  And one of the differences between a tantrum and a meltdown is that the melting person is NOT in control of their feelings and behaviors.  It is happening even though the person would much rather just stay calm.

         To avoid meltdown from overstimulation it is essential that the AS person have some alone and quiet time.  NT people often relax by spending time with their friends, but AS people need to relax AFTER spending time with their friends.  Computer games are a good way to relax the brain after too much socializing.

          In the past, many “authorities” have said Aspies lack empathy.  This is now being recognized as the opposite, now that we are all talking together on the internet.  The real problem is being hyper-sensitive and having too much empathy.  This is so hard to deal with that it results in a shutting down of emotions because to open to all the pain and suffering in the world is too much to bear.

          The same misunderstanding has also been applied to humor.  One doctor, when I told him about my Asperger’s, said he didn’t know anything about it, and opened a doctor book he had and it said Asperger’s people had no sense of humor.  He said this couldn’t be me because I had a great sense of humor.  I told him that was so wrong, and he believed me, not the book.  On Facebook my funniest friends who send around the best jokes are Aspies.  Often we have an odd sense of humor others don’t get, often deadpan, and we often miss sarcasm and irony because we tend to think everyone is honest and says what they mean, like we mostly do.

          One of the hardest things to learn is that people don’t say what they mean.  We believe it when someone says, “Sure drop by sometime,” when they really mean the opposite.  This tendency leads to social misunderstandings.  The idea of fake politeness is foreign (we probably ARE from another planet where we communicate telepathically in pictures and CAN’T lie) and incomprehensible until we are taught otherwise.

      There is also a tendency to think that the way we do something is the ONLY way to do that.  It isn't even that we think our way is better than other ways, but that we just can’t conceive of doing it a different way.  This can lead to miscommunication problems and the tendency to tell others how to do things.  Sometimes when someone tells me how I can do something an easier way than I have been doing it for years I stop and think, “Wow, that really would be better,” and I can change my patterns.  This is also hard for people who consider Aspies so intelligent they should think of everything to understand.

          Being directionally challenged is another frequent characteristic and we have a hard time finding our way around freeways, shopping malls, campuses, and just about anywhere until we become very familiar with ways to get places over time and it makes familiar places seem safer than the great unknown.

          We often have more trouble with verbal instructions than written ones, which has been hard for me to explain.  A person can tell me how to do something and the words don’t seem to make any sense, or I can’t remember them, but when I ask for clearer instruction I am often told I’m so smart why can’t I understand them and am accused of purposely not being able to do the task because of being lazy, or that I don’t want to, or…..

          Temple Grandin wrote a book called "Thinking in Pictures” and this is often the way AS people think.  Words are just too slow, and too confusing.  This annoys mathematics teachers who discourage fast answers, not arrived at THEIR way, and explained in words, but sometimes words just aren’t there to describe the thought processes.  Many possible math geniuses give up due to ridged teaching methods. The Aspie mind tends to be constantly in motion, thinking and thinking and thinking and going over and around and this and that and what if and maybe that and what would happen if and should I do that or that or wow what a great book I just read….

          I think this is the part where interrupting comes in.  Words are just too slow, other people just think too slow, and I should say what I’m thinking about now because I’m thinking about it now…  A large number of AS people take doctor meds to calm down this overthinking and to be able to sleep.  Staying awake thinking too much is extremely common. 

        Stimming is another behavior found along the Autism Spectrum that exhibits differently in manner and severity.  Stimming is a repetitive body movement that is often involuntary and helps to calm the Autistic mind.  Hand flapping, head banging, twisting hair, chewing fingernails and fingers, picking at the skin, spinning in circles, finger movements, and many others are often seen as detrimental or dangerous by the NT person, but calming to those on the spectrum.  Some can be harmful, but hard to stop, even when the person realizes this.

Gravitational insecurity has been perhaps my favorite phrase in AS behaviors.  It replaced the labels coward and klutz and lets me be comfortable with being uncomfortable in driving, sports, carnival rides, rooftops, bridges, cliffside roads, bicycle riding, roller skating and anything else involving body movement and heights.

          I almost left out touch because it isn’t a big problem for me or my son, but many Aspies have trouble with it and are uncomfortable with other people touching them.  With severely Autistic people it can actually be painful.  Hugging, especially by stranger can cause emotional distress and even meltdowns.  

          So, as you see, I have tried to describe Asperger’s Syndrome but no two Aspies or even no two doctors agree on exactly what it is.  My post ends with a question mark, just like the title, and I hope you the reader take the time to learn more for yourself.   

Aspie, or Aspie Not

Several of the posts on my Facebook Asperger's groups today have been about identifying as Aspie, saying I am instead of I have, and whether to tell others, or if labeling yourself Aspergrian is even necessary or good.  I am so glad I discovered I am Aspergian (I think that name makes me feel like I really am from another planet) and although some of my friends said it was labeling myself, I considered it as UNlabeling myself, from being crazy, stupid, uncaring, and all the other labels friends and lovers had put on me.  I am so not ashamed of being Aspie, and suddenly all the things I can't do well are ok, just me, the way I was born. It is up to you to cope with me or leave me alone. I do many things better than some people, and I am happy giving up having to do everything as good or better than everyone else.  Get over it.  It is quite a relief to not try to be as good as others in things I just haven't been able to do in my 60 yrs.

My son was just as relieved when he found out at 34 with his official diagnosis.

It is not doing your children any good to deny their Aspieness.  It does not mean they are defective. It means they are just fine the way they are.  They know they are different, don't deny them the community of others who are much the same as them. My online Aspie community is there for me every day and understands me better than most people. The saddest ones are the young people whose parents won't accept their differences.

I am proud to be an Aspie, and April being Autism Awareness month want to share this.