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" In a box not a bottle" Asperger's revealed


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Asperger Syndrome (AS) is a neurological condition. People who have AS are born with it, and have it for life, although as they mature they may gain new skills, outgrow some of their AS traits, or use their strengths to compensate for their areas of disability. AS is generally considered a form of autism, an autism spectrum disorder (ASD). Other closely related autism spectrum disorders include HFA (High-Functioning Autism), PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) and NLD or NVLD (Nonverbal Learning Disorder). The boundaries among these diagnoses—and whether in fact they are all on the same spectrum with each other and with profound, classical, or Kanner’s autism—remain open to discussion.

 

Current research indicates that there is a genetic foundation for AS, involving a number of different genes. So it’s not surprising that when a person gets an AS diagnosis, the family often realizes that many relatives also have AS or other forms of autism. At AANE we have met or talked with well over 6,000 families. We see that in many families where a child has AS, one or both biological parents will also have AS, or have AS traits to some degree. People also report that many relatives from previous generations (when AS was unknown) were eccentric or quirky, were diagnosed with a mental illness or hospitalized, lived a reclusive life, were chronically unemployed, or married and divorced multiple times. At the same time, many relatives may have shown high intelligence, superior memory, single-minded focus, original thinking, or unusual interest areas. Some may have achieved great success in engineering, math, writing, composing, philosophy, or other fields. These relatives, whether quirky, gifted, or both, may well have been people with undiagnosed AS.

 

No one really knows how prevalent AS is; perhaps one in every 250 people has AS—and maybe more. Dr. Tony Attwood estimates that as many as 50% of people with AS remain undiagnosed, in part because AS has only recently been publicly recognized on a broad scale. (It only became an official diagnosis in the United States in 1994.) Some people with AS continue to be misdiagnosed, while others “fly under the radar.” That is, they have traits that are mild enough so that they manage to adapt and function sufficiently well to be considered merely eccentric or quirky.

 

AS is a “pervasive developmental disability.” That is, people with AS may often appear or act younger than others of the same age. Children with AS often show delays in multiple areas of functioning, such as gross or fine motor coordination, social skills, or executive functioning (organization, prioritizing, and follow-through). However, they also continue to develop and mature—on their own time-table. Some people with AS may have specific gifts in mathematics, literature, or the arts. There is strong evidence that such superstars as Vincent Van Gogh, Emily inson, Albert Einstein, code-breaker Alan Turing, and musician Glen Gould, among many others, all had Asperger Syndrome. Today, too, there are adults with AS who are successful as professors, lawyers, physicians, artists, authors, and educators. For this reason, many people with AS, and professionals who know them, consider AS a difference rather than a disability. The brains of people with AS seem to process information and sensory stimuli differently than the brains of neurotypical (NT) people. This can be a source of difficulty, but it can also be a strength. For example, people with AS are often very good at noticing visual details or remembering facts, skills that are useful in many professions. On the other hand, the same people may be too perfectionistic, become too obsessed with details, or have so much trouble seeing the big picture that they cannot complete a project.

 

While respecting the abilities and humanity of people with AS, one should not underestimate their struggles and suffering. A society designed for and dominated by the neurotypical majority (i.e., people who do not have AS) can feel uncongenial and even overwhelming for a person with AS. In particular, living in the United States in the modern information age—in a crowded, complex, industrial society—can pose real challenges for people with AS. American children are generally expected to “play well with others” and grow up fast. Adults are expected to work 40-60 hour weeks under fluorescent lights, to attend meetings, work on teams, rapidly absorb oceans of information, and multi-task. Solitary pursuits such as hunting, farming, or tending a light house are less available today. On the other hand, some people with AS have found employment (and sometimes mates) in the computer industry and the global economy.

 

People with Asperger Syndrome usually experience:

 

Difficulty knowing what to say or how to behave in social situations. Many have a tendency to say the “wrong thing.” They may appear awkward or rude, and unintentionally upset others.

Trouble with “theory of mind,” that is, trouble perceiving the intentions or emotions of other people, due to a tendency to ignore or misinterpret such cues as facial expression, body language, and vocal intonation.

Slower than average auditory, visual, or intellectual processing, which can contribute to difficulties keeping up in a range of social settings—a class, a soccer game, a party.

Challenges with “executive functioning,” that is, organizing, initiating, analyzing, prioritizing, and completing tasks.

A tendency to focus on the details of a given situation and miss the big picture.

Intense, narrow, time-consuming personal interest(s) — sometimes eccentric in nature — that may result in social isolation, or interfere with the completion of everyday tasks. (On the other hand, some interests can lead to social connection and even careers. For example, there are children and adults with an encyclopedic knowledge of vacuum cleaners.)

Inflexibility and resistance to change. Change may trigger anxiety, while familiar objects, settings, and routines offer reassurance. One result is difficulty transitioning from one activity to another: from one class to another, from work time to lunch, from talking to listening. Moving to a new school, new town, or new social role can be an enormous challenge.

Feeling somehow different and disconnected from the rest of the world and not “fitting in”—sometimes called “wrong planet” syndrome.

Extreme sensitivity—or relative insensitivity—to sights, sounds, smells, tastes, or textures. Many people outgrow these sensory issues at least to some extent as they mature.

Vulnerability to stress, sometimes escalating to psychological or emotional problems including low self-esteem, depression, anxiety, and obsessive-compulsive behaviors.

AS affects people lifelong, but many can use their cognitive and intellectual abilities to compensate for some of the challenges they face, so as people grow, AS can be managed. At AANE, we have seen countless people with AS who, given the proper supports, have used their AS traits to their advantage to accomplish feats beyond what the “typical” mind could muster. Traits and talents from which individuals with AS often benefit include:

 

Normal to very high intelligence

Good verbal skills, including rich vocabularies

Originality and creativity including a propensity for “thinking outside the box”

Honesty and ingenuity

Careful attention to details

Strong work ethic, with particular attention to accuracy and quality of work

Special interests that can be tailored toward productive work or hobbies; individuals with AS who have intensive knowledge in one or more specific areas can channel their expertise toward new discoveries and creations in their chosen field

Keen senses allow some people with AS to see, hear or feel subtle changes in the environment that others do not, resulting in phenomenal powers of observation

The gap between intellectual ability and functional presentation complicates the AS experience. Friends and family members often see a highly intelligent, talented individual, and cannot comprehend why the person with AS struggles during routine social or organizational experiences.

 

One of the frustrations of an Asperger diagnosis is that because people with AS are often extremely bright, with excellent rote memories and verbal skills, overall expectations for these individuals are high. Those around them may be surprised to see how deeply people with AS struggle in certain areas, such as the social realm, and may not understand that such difficulties are valid and real. Many times, people with AS are blamed for behaviors they cannot control.

 

Dr. Stephen M. Shore says, “When you meet one person with AS—you’ve met one person with AS.” That is, it is very important to remember that people with AS can differ greatly from one other. Everyone with AS is affected by a common cluster of traits, but the intensity of each trait lies along a continuum. As a result, the extent to which AS shapes an individual’s life course and experiences is highly variable.

 

We hope this information helps your awareness of Asperger Syndrome. Knowledge is the first step toward positive change in the lives of you and your loved ones. Good luck on your journey to understanding the role AS has played in your life.

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What is strange is that we cannot identify any other person with ASD in our families. I asked my mother about her family and she knows of no other individuals with ASD. My dad's family I don't think so although there may be one possible candidate, a great uncle. He was considered "slow" and he never married.

 

My husbands family 97% of them live in the UK. Most of whom he's never known or never met and/or have passed on long ago. Two of his grandparents he never met because they passed on before he was born. And his other two grandparents he only met once. He has an aunt and one set of cousins who live here but none of them have ASD. He has many cousins in the UK and they have children but none of them have ASD either.

 

So it could be that our son just happen to have a gene mutation between him and I. That our genetics together just caused that mutation. They say autism is more prevalent with fathers that are older but my husband had just turned 27 when our son was born so he was 26 when our son was conceived. And both my husband and I don't have a developmental disorder.

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No one really knows how prevalent AS is; perhaps one in every 250 people has AS—and maybe more. Dr. Tony Attwood estimates that as many as 50% of people with AS remain undiagnosed, in part because AS has only recently been publicly recognized on a broad scale. (It only became an official diagnosis in the United States in 1994.) Some people with AS continue to be misdiagnosed, while others “fly under the radar.” That is, they have traits that are mild enough so that they manage to adapt and function sufficiently well to be considered merely eccentric or quirky.

 

I find this so interesting, when I look back, I can think of two friends (one is still my friend--the other not since university) who I grew up with that were extremely smart, almost scary smart but also completely inept in social situations and with dealing with emotion. I always thought they were both a little "different' and I always interacted with them differently because they were not really able to emote, or be understanding of emotional distress. I really think they may be somewhere on the autism spectrum but have just never been diagnosed because it was not well known in the 1980's and they are not crippled by it. People make this big deal about how prevalent autism is now and how there is something going on because so many kids are being diagnosed, and I really wonder if it was prevalent in the past too--particularly aspergers, but people were just not diagnosed.

 

So it could be that our son just happen to have a gene mutation between him and I. That our genetics together just caused that mutation. They say autism is more prevalent with fathers that are older but my husband had just turned 27 when our son was born so he was 26 when our son was conceived. And both my husband and I don't have a developmental disorder.

 

It's so mysterious, eh? I hope one day they get to the bottom of all the possible causes.

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Yes ,it's strange because there is no prevalence in our families for developmental disorders. So for our families he is a complete anomaly.

 

It is quite possible that your friends did/do have Asperger's . Don't forget every person with Asperger's is also very different. And the severity of it is different in different individuals. And it can have different severities even though it is a very mild form of autism .My son also has two learning disabilities that are independent of his Asperger's . The psychologist did say though that he's the Asperger's poster boy. He is one of those geeky strange children. And I don't mean that with any disrespect at all as you know. I love my son absolutely to death and I don't mind geeky children. But I just know how the world sees them.

 

And as far as emotion goes yes I understand what you mean. To explain when my son was at his great grandfather's funeral two years ago he stood there in total silence and showed no emotion whatsoever, none. He made no signs that he recognized anybody's distress or tears or anything else. He offered no condolences no hugs and looked at no one.

 

Conversely though if I am in tears that sends him into a flood of overwhelmed. Ever since he's been an infant if I cried he will cry. Even now if I am in tears he becomes immensely distressed. I am his connection to emotion. And it is not that they don't feel deeply about people because they do. They have very deep feelings actually. The disconnect is in how to express it. But because I have emulated for him how to be an empathetic person he reflects that back to me. You have to teach them how to respond properly. They do not learn just by osmosis like other children do. Things have to be specifically taught over and over and over and over. My son is animated with no one else but me. If he talks to me there's complete animation if he turns to talk to somebody else he becomes immediately robotic. And when talking to other people he shows absolutely no emotion on his face ,he won't look at them in the face and he becomes very stiff and rigid. If people say hi to him on the street ,people who know him ,he generally ignores them. And he's not trying to hurt their feelings or be rude he just sees no sense in the response or the idle chitchat. So you see they don't transfer the skills from one situation to the next. In another situation they have to be taught the same skills again even though it is the same skill it is a different situation but they don't recognize that they correspond.

 

 

I remember when he was an infant if people tried to approach him he would actually growl at them. Or he would scream in terror.

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I don't know if you've addressed this buy from a lot of the reading I've been doing asperfers I girls presents differently than in boys. My four year old is a girl so it is of interest to me. I am reading the books Aspergirls right now and finding it very helpful . One thing I noted in one of your original posts on asd is unusual interests. In girls the interests are often typical as far as type if interests, animals, ponies, princess etc. The difference is the intensity in the focus on those interests. So often girls are very good mimics so they may not come by Social interaction naturally easily, they do learn to mimic appropriate behaviour and thus end up not getting diagnosed as early or as easily as boys. Often another girl takes them under their wing and helps them along. Sometimes it's not diagnosed till they are older and it's more obvious there is a difference. I can see the mimicking in my daughter. She mimics everything. But she doesn't do things naturally. She doesn't tell people she loves them or give hugs. She'll respond to me telling her I love you, only at bed time and only recently started this, kind of like she knows it's a response to repeat. But she doesn't say I love you like other kids. Won't say good night. I had to teach her that screaming when the grandparents left was not OK but they like it when we say goodbye and wave or hug. She won't hug but now she'll wave and say goodbye. She wouldn't so it from just watching. Only when I told her "this is what we do and what we don't do". She plays with other kids by mimicking.

 

We are having her evaluated by a developmental pediatrician in January. I just hope we get someone good that knows asd emptiness girls.

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No ,I don't think I've specifically mentioned that there is a difference between boys and girls with autism. But yes, I have heard that there is a difference. I know for more severe forms of autism girls usually end up worse off than boys. However boys are 4 to 1 more likely to get have autism than girls.

 

I would be interested in knowing how autism presents in girls. You can add stuff in here anytime you want. As my view is particularly only the view of having a boy.

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I think it's possible too BS. You remind me a lot of someone I was once closely involved with - but I don't know if he was just severely avoidant. He knows he is severely avoidant, and he also thinks he might have Asperger's, but there is no motivation for him to have any type if support or be tested because, in his own way, he is comfortable and happy as he is.

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Most people with Asperger's want the same things that everybody else wants. They want relationships and friends they just don't know how to go about it. The vast majority are not purposefully avoidant. The psychologist who diagnosed my son also told me a lot of them are not very good with self introspection either. But of course that is not to say that they can't be because everyone is different. But lack of self introspection is one of the hallmark signs.

 

My son too is very self-satisfied. And the psychologist said he has a very good sense of self and a very good sense of future goals. And he has a very solid stable personality. He said that bodes very well for his future and that he will have a solid resiliency. That obviously he has been very well supported in his life and that my son reports a lot of self-satisfaction.

 

He said it was obvious to him that our son was raised in a very loving and accepting and stable atmosphere. And that our son reported having very stable loving relationships with both his parents and reported no trauma in his life. So he said he reports a lot less distress and anxiety than most people with Asperger's.

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My sister has autism and she is worse off than her brother. Verbally especially. She had the severe developmental regression at a young age. I'm pretty sure that my father had mild ASD but was very diagnosed. Everyone else in my family thinks it. So, out of 5 people, 3 have autism.

 

I've had a few different people ask me if I have ASD. I said no, I'm just awkward and I grew up with others who have it and I am more solitary than others, to the point I was held back in preschool because they felt something was wrong . That's just me.

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And that's the thing they find that there might be one parent who has ASD when the children do. So I guess it could be possible that your dad does. And even mild ASD has different levels of severity. And has vastly different levels of being able to function.

 

For me I'm just totally curious how this happened with my son because as I said looking around in the family's backgrounds I just don't see people with autism. I would say though that my husband does display social awkwardness. But I don't know if that was more lack of opportunity when he was young ,lack of direction or just a social clumsiness. But I know for sure there's no way that my husband has any form of autism. There is a study by Simon Baron Cohen correlating the occupations of parents and the prevalence of autism in their children. Basically he's trying to make a case for the possibility that the children of engineers have a greater risk of having autism. I'm not sure if that's well peer-reviewed though.

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My father and brother are actually a lot alike. It's almost comical. So yeah, I believe he has it. He is a great dad but he can be insensitive and kind of clueless. Everyone in his office laughs about him. He'll raid the fridge and eat the food of others, and he'll hoard everyone's pens, and things like that. But he's very smart at his profession so they excuse it and laugh about it instead.

 

I've heard that parents with high IQs, even if they don't have ASD, are more likely to have children with autism even without a family history. Guess that means that my parents are both geniuses because 2/3 is crazy.

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My father and brother are actually a lot alike. It's almost comical. So yeah, I believe he has it. He is a great dad but he can be insensitive and kind of clueless. Everyone in his office laughs about him. He'll raid the fridge and eat the food of others, and he'll hoard everyone's pens, and things like that. But he's very smart at his profession so they excuse it and laugh about it instead.

 

I've heard that parents with high IQs, even if they don't have ASD, are more likely to have children with autism even without a family history. Guess that means that my parents are both geniuses because 2/3 is crazy.

 

Hahahaha there you go! Yes ,I think that's what Baron Cohen is trying to say that high IQs in parents cause autistic children. I would say that my husband does have a higher than average IQ. He's in a very technical trade in the Air Force and he got 97% on the engineering portion. Me ,I would say my intelligence is average.

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And the psychologist placed my son's crystallized intelligence on the higher end of average about 110 or so. But his fluid intelligence he based lower average around 93. He said because of his learning disabilities he was harder to place. And some of his skills are very vast and others are very limited. And unlike other people with autism he's not very visual he's very verbal. He said some aspects of his verbal skills are very superior. But because of his phonological disability other aspects are very poor. So he said he was a very difficult child to place on an intelligence scale. But he did rate him over all a little higher than average or average.

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I think I know what led to the meltdown today. He had to put down his address ,name and phone number for the Xbox live account. And in the past online I had told him to never do that. But he doesn't see the difference between a billing option and a stranger on the Internet asking for it. And also they asked him so many questions that he had to keep asking me to spell out the answers. So he was getting increasingly frustrated. And then he just got overloaded and went into meltdown.

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Hello! Thanks for this. My older brother has Asperger's Syndrome. He is 28 years old. Hope all is well with you and your son. AS kids may be difficult at times, but my brother is pure and simple. They are wonderful, sincere people. I wish more people were aware and accepting of them. Much love to you and your son.

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Hello! Thanks for this. My older brother has Asperger's Syndrome. He is 28 years old. Hope all is well with you and your son. AS kids may be difficult at times, but my brother is pure and simple. They are wonderful, sincere people. I wish more people were aware and accepting of them. Much love to you and your son.

 

Thank you very much. Hugs and love to you and your brother.

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