FAQ’s

I found this list of frequently asked questions and found it interesting and wanted to share.  This is from the AANE website:

How many people in the US have Asperger Syndrome (AS)?

Because AS was only recently identified as a diagnosis, a count of the number of individuals affected by this syndrome is still hard to come by. Recent survey results from the National Institute of Child Health and Mental Development estimate that 1 in 500 people (0.2% of the general population) have some form of AS. Some estimates run between 0.36% and .71%. Among people with Asperger’s, the prevalence of males to females diagnosed represents a ratio of 4:1.

How is Asperger Syndrome diagnosed?

There is no one test for Asperger Syndrome. Some “Asperger Syndrome checklists” found online can give an indication of whether AS might be an appropriate diagnosis, but many people desire professional testing. When seeking a diagnosis, it is very important to find a trained clinician with extensive experience diagnosing people with AS as well as individuals in your age range (adult, teen or child). The clinician will usually ask questions about your behavioral history, make behavioral observations, and administer various paper-and-pencil or computer-based tests to evaluate a range of cognitive, linguistic and communicational abilities. When you go to see the clinician, be sure to bring with you any previous testing or other written records of past behaviors that stand out in your life. It is also a good idea to bring along a friend or family member who can provide additional perspective on who you are.

Are there examples of successful adults with AS?

One well-known Hollywood figure, Dan Akroyd, has publicly acknowledged his Asperger Syndrome. Because the diagnosis is so new, few living high profile adults have disclosed their own Asperger’s diagnoses. However, many people have theorized that some very well known historical figures may have had AS. Among them:

• Jane Austen
• Ludwig van Beethoven
• Emily Dickenson
• Thomas Edison
• Albert Einstein
• Thomas Jefferson
• Franz Kafka
• Wolfgang Mozart
• Friedrich Nietzsche
• Henry Thoreau
• Vincent van Gogh

…Did they have Asperger Syndrome?

Why is Asperger Syndrome “lumped in” with autism?

Because Asperger Syndrome shares some of the core traits of autism (although they may be expressed to different extents), and because the two often occur within the same family (suggesting a genetic link), Asperger Syndrome is generally considered to lie on the “Autism Spectrum.” It has yet to be determined whether High Functioning Autism (HFA) differs from AS and, if so, how. Both AS and autism involve a neuro-biological difference in how information is processed and integrated.

Is there really an epidemic increase in Asperger cases and other forms of autism?

This question is complex. Although Asperger Syndrome was first written about in the 1940s, it did not gain widespread recognition until the mid 1990’s. Since then, diagnoses of AS have been on the rise. However, as of 2008, not enough data exists to reliably determine whether the incidence of AS itself is increasing, or a diagnosis of Asperger’s is being given to people who were formerly left undiagnosed or misdiagnosed with psychiatric, behavioral or emotional problems.

What is the significance that AS is a Developmental Disability?

Every person with Asperger Syndrome is developmentally delayed, not intellectually, but at the social-emotional level. This delay can be significant; for example, a 21-year-old may seem socially and emotionally more like a 14-year-old. The social consequences of being developmentally delayed often become particularly conspicuous during middle school and high school, when clear social expectations and friendship groups arise, dating becomes an interest, and children with Asperger Syndrome seem to be falling further and further behind. However, it can be helpful or even liberating to know that a child or adult with AS is functioning at about two-thirds of his or her chronological age. Parents and teachers need not expect a child with AS to “act his or her age” and can rest assured that development will continue, just at a slower pace. Individuals with AS, too, can take comfort in the knowledge that they are behind but still continuing to grow. As children with AS reach adulthood, they gain greater freedom to choose a social environment that matches their interests and developmental level. In fact, some adults with AS continue to grow and develop socially and emotionally throughout their entire lives.

Why do people with AS differ so much from each other?

Like autism, Asperger Syndrome itself exists along a continuum or spectrum. AS can impact a person’s life to a greater or lesser extent, depending on the individual. Moreover, each of the many traits that characterize AS has its own spectrum. So, a person with AS may have more or less social difficulty, more or less sensory sensitivity, more or less rigidity or organizational trouble, and so forth. Personality and gender also play a role in the way AS manifests itself. AS and personality are uniquely integrated in each individual, affecting which traits show up where. Social impairments, for example, will present more in an extremely outgoing person than in an introvert, whose poor interpersonal skills may be eclipsed by shyness. Incidentally, girls and women with AS are more likely to be of the shy, internalizing, “avoidant” personality type than boys and men, who are more often outgoing and inclined to carry their problems on the outside. This may play a role in the higher rate of diagnosis in boys and men.

To what extent do sensory issues impact the daily functioning of someone with AS?

A fair percentage of people with Asperger Syndrome are either hyper- or hypo-sensitive to touch, sound, taste, and/or sight (bright light). There is significant variation among individuals for this trait. Some are affected only a little, while for others, seemingly-normal sensory stimuli can throw up significant barriers to living in the world. Sensory sensitivities tend to be the most severe in young children and often lessen over time; some individuals are much improved by adulthood. Thus, a boy who cuts tags out of his clothing or refuses to eat certain foods may have an easier time with these things as he grows older.

Since people with AS are highly verbal, what is their problem with language?

Many people with AS have complex vocabularies and sophisticated speech, but using language to communicate, also called pragmatics, is a different matter. The rules of everyday conversation that come intuitively to most people have to be actively learned by individuals with AS. Difficulties arise in two spheres. First, people with Asperger’s generally do not notice – or notice but misinterpret – the nonverbal aspects of what other people are communicating to them, including facial expression, vocal expression, body language, gestures, volume, pauses, and so forth. Instead, those with AS miss the context and hear only the words that are spoken. The second sphere includes difficulties in areas of expressive communication such as filtering thoughts before they are spoken and socializing for the sake of interpersonal connection rather than (as many with Asperger’s do) for conveying information.

Do people with AS have feelings? How do they differ from those of people without AS?

People with AS do absolutely have feelings, although they may have difficulty identifying and discussing them. In fact, many feelings – such as fear, anger and joy – seem to be experienced more intensely by those with AS than by average people. In addition, some individuals with AS report that they can incorporate others’ feelings, so that if someone else is upset, they themselves will quickly become upset as well. This appears to happen more with Asperger Syndrome than with the general population. People with AS may not show their feelings in the same way, or to the same extent, as those without. There may be less outward manifestation of feelings, or facial expression might not match what the individual is feeling inside.

Do people with AS have empathy?

Like many traits among individuals with AS, the capacity to experience empathy lies on a continuum; some have it more than others. There is also variation in the way empathy is felt and expressed. Some people come to empathy through an intellectual process, using logic and reasoning to arrive at the feeling. For unknown reasons, it is particularly common for people with AS to feel a deep concern for human welfare, animal rights, environmental protection, and other global and humanitarian causes.

Can adults with AS lead independent lives?

Some adults with AS are able to lead completely independent lives. Others need some assistance, particularly in the areas of housekeeping, money management, and meal preparation; and still others will require more substantial supports in their living arrangements. There is no reliable way to predict the level of support a child will need when he or she reaches adulthood.

Can teens and adults with AS form successful romantic relationships?

Romance, dating, long-term relationships and marriage play a role in the lives of some people with Asperger Syndrome, and of these, many start their own families and become successful parents. Dating presents challenges for many with AS because it involves subtle social communication and requires one partner to “experience” the other’s experiences, areas of frequent difficulty for the AS population. Also, dating and relationships may feel exhausting because they typically require so much frequent socialization. For these reason, some with AS decide that intimate relationships are too complex and demanding for them. Others, however, simply take on the relationship challenge later in life (in their 30’s, or even later). Sexual orientation is as varied in people with AS as in the general population, although there may be a higher incidence of asexuality, homosexuality, and sexual role confusion among those with AS. The overall success of an Asperger partnership depends in part on the choice of partner. The most compatible partnerships are often between two people with AS or an individual with AS and one with AS traits, the two of whom share common values and interests.

Can AS be cured?

There is no cure for Asperger Syndrome. However, over time, the profile of a person with Asperger Syndrome often changes as the person becomes more comfortable in his or her own “skin.” Sensory sensitivities may become less severe, and the individual often gradually acquires social skills that at first were elusive. With time and practice, other troubling traits can be compensated for as well. People with Asperger’s can use their many strengths to their advantage as they seek out, and find, the most constructive environment to match their strengths and interests, and also one where their vulnerabilities are considered acceptable.

If thorns exist outside…

We all have our cross to bear.  My cross has been transparent.  That is, I can feel it’s weight, and I am aware of its presence and effect on my life. But, I don’t know what it is.  Each year my chapel’s Christmas tree is filled with crosses, beautiful crosses, and serves as quite a meditation as I look at the glass ones, the wood ones, the colorful ones, the ones bedecked with sequins, the bejeweled ones, hammered tin ones, and so forth.  And I always wonder which one represents me? I am the cut glass one, that distorts the light and throws it back at you in a spectrum.  That one represents me the best.  Why?  Because I cannot put my finger on what causes me to suffer in this world. At least, not until this week.

Now I know.  Now I know. The joy that came with this gift of knowledge and understanding is indescribable.  It was like finding that missing puzzle piece, a piece that has been missing for 39 years.  I cried tears of joy.  

But then, almost just as quickly, anxiety came over me.  This self-knowledge that was so liberating has created a new fear.  A fear that is  weighing very heavily. A fear that is threatening to throw me into a state of depression.  A fear that is threatening to change my outlook on life, to change my plans for my future and causing me to be completely frustrated.

Last May, I took an Education class.  In this class, we studied learning disabilities, and other causes of childhood deficiencies.  I was given the task of researching one of these and preparing a Powerpoint to the class about it.  My topic was on autism.  As I began to study and research, I noticed that I could relate to some of the things I was reading about.  It seemed to be jogging long lost childhood memories of struggles  Ihad back then.  I had heard mention of the autism spectrum, but didn’t know what was meant by that. Preparing to write this report, I soon learned.  And sitting on top of this spectrum was a thing called Asperger’s Syndrome.  I was soon in a state of disbelief.  It was like I was reading a page from my own diary, reading a script of my own life.  Without further investigation, I jumped to the conclusion that I had this thing called Asperger.  In my joy, at the time, of discovering what seemed like a missing link, something that seemed to explain my entire childhood problems, I posted on my website that I thought I had Asperger’s.   Very quickly, my sisters responded in the negative, stating I did not have some of the classic symptoms,, and therepfore, it most likely was not so.   Two things that came up were aggression and obsessive interests, classic traits of Asperger’s.  I agreed, almost reluctantly, that this was not me afterall, and embarrassed that I jumped to conclusions so quickly, I blocked the webpage so that no one could read it. Disappointed that the missing link I thought I had found, the explanation I was looking for all my life was not so, I dismissed the idea and forgot about it. 

Months later, I am student teaching.  Although I absolutely love the kids and teaching them, I was discovering obstacles.  I thought that I was talking loudly, clearly, energetically with gestures and smiles and inflection.  But I was told that, even though I was teaching a great lesson, I was speaking in a barely audible monotone, with no smiles, or gestures, or excitement in my voice at all.  I didn’t believe it. Not until I was videotaped and I saw it for myself.   Besides this, my anxiety was increasing dramatically.  I couldn’t understand what was asked of me, I didn’t understand all the paperwork I was supposed to be working on in the evenings.  Frustration was growing and the more it grew the more I started shutting down.  I worked hard, real hard on my gestures, and speaking, and how I related to the children.  I thought Iwas getting better, but really, all I managed to do was get louder.  I might have moved my arms a little more, I might have shown a little inflection, I might have been smiling occasionally, but compared to what I thought I was doing, it wasn’t happening.  And what more, I was noticing myself in certain students. And these students were all autistic.  Watching them interact and struggle was like re-visiting my childhood.

So, I started spending my evenings, whenever I could, whenever there weren’t lesson plans to be written or paperwork to be downloaded, investigating autism, particularly, Asperger’s.  Everything I read sounded like it was painting a picture of me.  I watched YouTube videos, and visited websites, and bought a book and read it,cover to cover.  I was trying to find something that would undoubtedly convince me that I did not have Asperger’s.  But the more I read, the more I discovered myself.  I discovered that, Asperger’s in females manifests itself differently than in males.  The classic traits that one thinks of, the aggression, and the compulsive interest in one or two subjects is not apparent in females.  Females, because they are, by nature, not aggressive and more nurturing, do not typically show aggression in Asperger’s females.  And, likewise, their interests are broader.  They still have some obsessive qualities about their interests, but not to the extent as their male counterparts.  Also, the classic Asperger trait of lacking empathy is actually manifested in females as having too much empathy at times.

One thing I thought would prove that I do not have Asperger’s was the classic trait of stimming.  Rocking the head is the most common autistic trait of stimming, but Aperger’s have a longer list of typical stimming.  As I read the list, sure that this would disqualify me, I found a stimming trait that I am guiltly of.  One that is less noticable, but it nailed me. I have done this all my life, as far as I know.  There were other things listed that I thought for sure I do not do.  But,by  now, almost convinced that I have Asperger’s, I decided to take a week and make a mental note of my behaviour.  What did people do, or not do when they were speaking to me, or to others? What do I do when I am talking to others? This was very revealing.  For one, I realized that I trace patterns, a classic autistic stimming practice.  I took note of how I fidgeted when I was talking, and just what I was doing when I was fidgeting.  More classic autistic traits.

All of this, as well, was jogging memories from my childhood.  I didn’t think I lined up my toys as a kid, but now I remember that I did, often.  I won’t go into details, for it is also a classic trait to ramble on and on and on.  So, I will stop myself now.

So, I pretty much made up my mind and self-diagnosed myself as having Asperger’s Syndrome.  The sense of relief was incredible.  I felt like I finally knew who I was.  Questions from my past were cleared up, especially questions dealing with situations concerning other people and their relations to me.  It was such a relief to come to this discovery about myself.  A feeling I cannot describe. 

But it did not last long.

Frustration from student teaching, combined with my readings about Asperger’s quickly revealed to me that I don’t think I am cut out for the teaching profession.  Yes, I love to teach and can do it well.  And, yes, I love children.  But unfortunately, there is more to it than that.  It is the observations, the critiqueing, the planning, the professional expectations that I find myself failing in, and feeling almost paralyzed at times, petrified at times, to have to do this or that.  I have found, like all Asperger’s that I take criticism personally, and then feel the need to defend myself, which is counterproductive, unprofessional, and a disposition that is never going to land me a position teaching.

And so, the frustration right now is immense, as I come to realize that teaching, at least in the typical public school arena, is not going to be a good match for me.  I feel like I have wasted the last four years of my life.  The fear of continuing with my emplyment dilemma, something that has haunted me for years now, will only continue, after I get out of school.

If I ever get a decent job,I plan to get a diagnosis, because I don’t want to rely on my own determinations.  But I have no doubt, at this point, that any diagnosis will put me somewhere in the autism spectrum.   

I started this blog for two reason: one to advocate awareness and understanding of what Asperger’s is, and two, pbecause I just needed to let cat out of the bag.  Not talking about it is bringing me down.

If you would like to learn more, I sugest you visit www. aane. org. I recommend, especially, the links, on the left, discussing of Apserger’s in females, and Asperger’s in Adulthood.

I have so much more to say, but not today. I leave you with a quote I recently discovered that relates how I feel right now:

“If thorns exist outside, roses bloom within”.

Dom Chautard