The Stigmatizing of Adults with Asperger’s Syndrome
There is a lot of stigma about what it means (especially in adulthood) for an adult to have Asperger’s Syndrome. Why is that? There are as many reasons as people who hold stereotypical views about Asperger’s Syndrome in adults. The number one stereotype is that all with Asperger’s are the same and fit all listed criteria (no longer included as such in the DSM-5 as it was in the DSM IV) that you can read about online. This is just not true at all. Firstly, there is are many differences between all who have Asperger’s Syndrome (listed now in the DSM-5 within the “Autism” outline – something that most in the Asperger community do not like) the most obvious one being the differences, for the most part, again, allowing for individual differences, between males and females. Females tend to be less affected when it comes to lack of empathy, lack of compassion, and other aspects of Aspergers than males are (which varies in a wide-ranging way with all adults with Asperger’s anyway) because females are still socialized differently (Reference: “Asperger’s Syndrome” by Dr. Tony Attwood) from males and Asperger’s does occur more often in males than females. Or, because there is only a diagnostic scale for males and not one for females, more females who fit the criteria would be diagnosed if not for this prejudice in the diagnostic process.
Other stigma producing misconceptions about adults with Asperger’s include the following:
- That Asperger’s Syndrome is just a disability
- That adults with Asperger’s have no social skills
- That adults with Asperger’s get “triggered” by things – that’s not really an accurate statement at all
- That adults with Aspergers are difficu
- lt to get along with
- That adults with Aspergers are people to fear, angry a lot, or often having meltdowns
- That if one has Asperger’s is effected by everything attributed widely to it – this is far from true and is very individual
- That all with Asperger’s need or even want to be “cured” – there is not cure currently but not everyone feels they want one
- That adults with Asperger’s can’t have empathy, compassion, learn to navigate effectively socially
- That adults with Aspergers are only interested in narrow focus of interest
- That adults with Aspergers are mentally ill – this is not a mental illness at all
1. That Asperger’s Syndrome is Just a Disability: As an adult with Aspergers I happen to know first hand that there are many blessing and a true giftedness that I have in part because I have Aspergers. Many, like myself, with Aspergers in adulthood are very “high functioning” and learn or have learned to use our narrow focus or focuses of interest to our benefit to take the unique and often faster and more efficient way that we can take in information, process it, synthesize it, and move forward with it in many ways, along with an above average intelligence, to pursue University education and contribute to the world in many fields as professionals. In my experience as a person with Asperger’s Syndrome, I believe it has given me a giftedness in many areas (Okay, not socially, but that doesn’t mean I have weaker social skills than the average NeuroTypical). Aspergers, in my experience, is also very much about having a different ability. Why do we have to judge the way “most people” do things then ascribe to that understanding, “normal”, (which is flawed non-existing concept to begin with) to it? Why is this incorrect assumption supported by an “us” vs “them” neurotypical version so supposed “reality”? A supposed “reality” that is lacking in any logic. Why is a different ability and other differences judged or perceived as “les than” or “abnormal” or “undesirable” when really any comparisons are “apples and oranges” type comparisons and do not even have their genesis in any common logical factors from which to draw this conclusion of disability in the first place.
2. That adults with Asperger’s have no social skills: While there are some deficits that are a part of Aspergers and the context of “socialization” is one of them, why is it assumed that all people with Asperger’s are without adequate social skills? The truth about his is that the degree to which people – individuals with Aspergers have or lack social skills is highly individual and therefore it is stigmatizing and stereotyping to think that we are all the same. I have found that one can map and learn from past experience enough to be able to continue to learn to better socialize and to function in social situations in ways that pass as “normal”. The biggest difference I find in this area is that I am firstly an introvert, (according to Myers Briggs test results, actually I am an Introverted-Extrovert) just to make things a little more fun, as in complicated an challenging 🙂 This not withstanding, what I know about my experience as an adult with Aspergers is that I do not have the same “social drive” or “social needs” as extroverted people or as NeuroTypicals generally. However, that is not something that is easy to accurately measure or quantify because there are many Neurotypicals who are introverts and/or lack social skills or a drive to socialize as much as extroverts for many reasons and they aren’t considered “weird” or to have s disability. Though they too, may be judged as “too different” or “weird” by the most social extroverted Neurotypicals. My question for you to consider here is, if you are an extroverted and very socially driven Neurotypical why do you consider (if you do) that this is the only desirable or “normal” way to be? Could it be that you judge based only on your own ideas about how people should be perhaps because you feel uncomfortable or confused by people who are not the same as you?
3. That adults with Asperger’s get “triggered” by things: This is not an accurate understanding, in my opinion. People with Aspergers are not “triggered” in the sense that someone with PTSD may be “triggered”. Rather people with Aspergers have sensitivities to various – again individual – things or experiences in daily life. Rather than being “triggered” we have different ways of coping with stress. We have challenges with “flow” and with quick or seamless transitions from one thing to another. Some have tolerance thresholds that vary. Meaning that if they have to work, they cannot transition from interruptions back to work, or be interrupted in their work for other reasons and have people coming and going who don’t show up and leave at times that are predictable. Aspergers does leave us much more literal than NeuroTypicals. If we are told something will happen at 1pm (even though many of us know better intellectually) we will find it stressful if that literal arranged time is not met. How each person with Aspergers can or cannot cope with this varies greatly. It is also very difficult for many with Aspergers to transition from work to different tasks, to socializing, and then having to transition back to work. For example, if I have to wait for a contractor to come to my home and do some work, and even though I hope for the literal time I was told this would happen (knowing intellectually it’s unlikely anyone arrives on the dot of that literal time) I often have to put off other tasks or work until that contractor arrives and/or his work is under-way. Then I can leave it and go on do my own thing o work while they do their work. Stress can be produced, for example, in my example, when the contractor comes two hours after the literal time given, or when the contractor fails to show up at all on the day specified, let alone anywhere near the literal time arranged. If this continues over a period of time the stress that is causes me increases. While I try to continually de-stress, and often do so quite effectively, a cumulating stress that is on-going for a month plus for example, will become somewhat untenable to continue to tolerate and be able to get my work done and other things I want to do done or just relax and find something recreational to do. The point is that I am not “triggered” by the work of the contractor or unfinished things. It is the stress of managing to deal in and on-going way with a situation (I recently encountered with what is at the time of writing this a still on-going renovation of a townhouse I moved into recently) that feels invasive and intrusive to me. Even though I know intellectually that it’s not intrusive and invasive in any personal way or even isn’t as such in reality. It is the nature of my needing and wanting more time alone to pursue whatever I might pursue in work (writing, caring for my dogs, with friends, or many other things). It is not only an Asperger transition difficulty, it is also an introvert’s need to not be having people coming and going so much and end up with a lot of wasted time if time is set aside and then no one shows up at time I was told they would. (I get, again, intellectually that these things happen) Knowing that others may well not understand any of this if I try to explain it, nor can it be “accommodated” or change a given situation, necessarily, I am left to deal with higher stress than I would normally feel. This is not a “trigger” it’s long-term low-grade stress that builds and it is also low-grade frustration that builds and increases making things more difficult for me in ways others may not be able to relate to. But this is different from the traditional psychological definition and scope of a “trigger” in many other challenges that people face.
4. That adults with Aspergers are difficult to get along with: This is a stigmatizing stereotype that does not take into consideration differences to which we are entitled and worthy of having respected by others. Just as we have to be willing to compromise with others in situations where, for example one is living in the middle of a renovation, or requires repair work done on something, or things of that nature, others have to be respectful of perhaps different needs that I know can’t always be accommodated but that definitely are worthy of being without disrespecting a person’s difference, wherever possible. There is an inherent and very quick-to-judge a person with Aspergers as “difficult to get along with” if others to not pause to ponder differences and not expect that those with Aspergers or more introverted NeuroTypicals will all handle the stress of certain situations in the same way. I’m not sure that all NeuroTypicals would handle all situations in the same way themselves. When you move into a new place and people don’t know you, as I did recently, they can’t know I have Asperger’s either can they? So beginnings can be more difficult generally for me and for others due to this. Why? Because learning about me as an adult with Aspergers – me as an individual with Aspergers not me as a person with that “Asperger’s” read about online with all kinds of “traits” or things described therein that have nothing to do with me takes time. Also, because people, rather than jump to the judgment or unrealistic expectation that everyone new in a place will know what to do or will be included or assimilated in the same way, need to first try to dialogue and understand differences before they return to an unwelcoming (perhaps by my differences – and we all have them regardless) self-comfort culture of who they know and are comfortable with and then leaving me on an island of sorts. People with Aspergers like all people, perhaps to a somewhat lesser degree, hard to quantify, are not more difficult to get along with for anyone willing to be friendly, welcoming, and take the time to set aside judgment or what have you about differences and get to know an individual who is new and not pre-judge and end up talking about that person as “weird” or “difficult” when in my case, I can say with assuredness, this is just not really the case at all, when people really talk to me and get a feel for who I am. People with Aspergers are not more difficult to get along with when they are given the decency of respect and a chance to be known versus being pre-judged whether others know or not that they have Aspergers. People need to realize that while we all have difference, we still do have a lot of basic human things in common. We need to build bridges and not be in such a hurry to categorize and label and judge people and then just ignore them or as some people do just get their backs up. People who pre-judge and are not welcoming or willing or able to consider differences have their own issues and may be considered somewhat difficult themselves and need not project that on to people with Aspergers.
5. That adults with Aspergers are people to fear, angry a lot, or often having meltdowns: People with Aspergers, speaking generally, are more likely to be honest to a fault, perhaps out of “socially accepted convention” in ways that seem or are perceived as blunt. Many with Aspergers have little to no frame of reference of the NeuroTypical “social context” of saying things that they don’t mean or being dishonest – presenting as friendly while not meaning it which a person with Asperger’s will literally believe to begin with and then be confused by as they have to then try to figure out the duplicity. Speaking for myself, I am used to this so-called “NeuroTypical social context” which can be defined as a less than honest way of communicating and handling needs/wants, boundaries and the like effectively. Simply put, not having Aspergers does not mean you are “normal”. What is normal? Normal is a concept thrown around, thought about and judged that I defy someone to actually define. People with Aspergers, just like people who do not have Aspergers (called NeuroTypicals -NT’s) can have meltdowns. Like any individual, the propensity for a meltdown is an individual thing. In my case, it is very rare I have a true meltdown. And not all meltdowns would be the same regardless. There is no reason to fear people with Aspergers. This is especially true when you learn a bit about Aspergers but not without getting to know what is true for any individual with Aspergers (AS) or not because as I’ve said, each one of us is not effected in the same way or the same degree that you may think if you just paint us all with one brush of what you may read online. People with AS are often a lot less angry than their NT counterparts. This notion, stigma and stereotypically uninformed way of thinking that people with Aspergers are to be feared or are angry a lot or are often having meltdowns is prejudicial thinking to say the least. Again, it is highly individual. Not that anyone with AS alone would need to be feared at any point regardless due to having AS. Speaking for myself, again, I experience a tremendous amount of inner-happiness and joy in my life in many ways. I can experience this with others but I experience and to be honest value the quality of the inner-experience more than shared with others experience. That does not mean I don’t like to share with others, work with them, or be social. I do. It just means I will prefer and need more time on my own than I share with others which again is not totally about having AS, it is also a lot to do with being introverted. I think people easily fear what they do not understand. So working to help others understand me as an individual and yes, an individual with AS, as I need to get to know and understand others and often the different challenges they are facing in their own lives is how we can bridge differences in an accepting way and find common understanding, respect, and common ground with each other.
6. That if one has Asperger’s is effected by everything attributed widely to it: This is perhaps the most stigmatizing, stereotyping, disrespecting, painful, derisive, unkind, and inaccurate assumption made about people with AS. We, who have AS, are not all the same at all. The fact that I have AS does mean it is the sum total of who I am. It is not. It is something that is a part of me. Their is much more to me than just AS. I value very much the positive attributes that result in my life and my different ability that is due to being an individual with Aspergers. Unlike what you can read about Asperger’s Syndrome, that would not apply to me, would be that “all with AS lack empathy,” have no compassion, lack personal insight as to how they relate to others or are perceived by others, care only about themselves, “lack social skills”. These do not apply to me at all. They do not apply to all with AS. There is also that vast difference between genders with AS. However, having said that, you still have to consider the individual, be the male or female. Please do not read about Aspergers and then think you know someone and that’s who or how they are. It is pre-judging and intolerant and disrespectful to generalize based on a label that many write about from a “professional” or “academic” perspective (who do not have AS) and who really may not have encountered those of us more “high functioning” as much (if at all) to the degree they encounter those who are much more greatly affected and lower-functioning due to Aspergers. It is just a common sense reality that those who have more of the listed and defined “Asperger traits” than those of who don’t are not the same and need to be considered (all of us) individually and that “professionals” encounter much more often those who need more help and are lower-functioning than those of us who do not need their help and are higher-functioning. People with Aspergers are not going to fit all criteria you can read about and again, each is an individual who needs to be seen first and foremostly as such and not painted with the broad-stroke “abnormal” approach to defining what it means to have Aspergers.
7. That all with Asperger’s need or even want to be “cured”: I would question if Asperger’s Syndrome, now categorized in the DSM 5 under Autism Spectrum Disorders, should be in the DSM at all. Should it even be considered something that is “abnormal”? I don’t think so. I think it’s about difference. Difference in many ways and also difference in ability. People with Asperger’s or on the higher functioning end of the autism spectrum are not disabled only or that much. Rather we are differently abled in a world that seeks to still judge and understand people based on similarity to self or to group, community, etc. rather than taking each person for the individual that they are and working harder at accepting and differences and learning that in doing that we can then find more common ground similarities after all. As an adult with Asperger’s Syndrome I find it much more a gift than a “disability”. I find it much more to be a part of me then some way of defining who I am as an individual in totality. I don’t need to be “cured” from anything. I believe that Autism, all along the spectrum, is an different way of being, thinking, expressing, (or not expressing for some) connecting, (not connecting for some) but there is in everyone on the Autistic Spectrum despite what some lower-functioning “classic autism” a quality of life. A quality of inner-life in many ways that those who are NeuroTypical cannot at all understand. There is not need to cure what is simply a different way to be.
8. That adults with Asperger’s can’t have empathy, compassion, learn to navigate effectively socially: Again, this is a stigmatizing and stereotyping notion or cognitively-distorted belief ascribed to those with AS. It is also very important again to keep in mind the individuality of each with AS and not lump us all together. There are people with Aspergers (often male but not limited only to males) more profoundly affected by AS who may not show or express in NeuroTypical ways empathy or compassion or learn to navigate effectively socially. But this is highly individual. And even in those that seem to lack the expression of empathy or compassion, I have written about his on this site elsewhere in detail, this does not mean they lack empathy and compassion totally but it does mean that one would have to be very attuned to the ways that you could glean this from some those with Aspergers who are not going to express it the way that NT’s are used to receiving it. For example, and this does not apply to me personally, (though I do need to remind myself from time to time in social contexts) due to the (and it varies too) literal nature of Aspie understanding and interpretation I have had clients with Asperger’s or spouses (parents) of someone with Asperger’s ask my many times why does their Aspie loved one not tell them they love them? What is often the case, for many, is that they have been told they are loved but some with AS, being much more literal than (I and others) think that if “I told you once I love you, you know I love you, why would I have to tell you again and again”? Many people with Asperger’s (like myself) are quite capable of empathy, compassion and navigating the NT social world.
9. That adults (or children) with Aspergers are only interested in their narrow focus of interest: For many, and especially younger children (“little professors”) with Asperger’s this can seem to be the case. Their is no doubt that each individual with AS has one to two areas of intense narrow focus. And they will want to talk about it intensely, often, perhaps in some cases in seemingly-unending ways. This is not the case with all. Yes all with AS have narrow focus on interest(s) than enjoy talking about them. As adults, however, many of us have learned that relating and conversations can’t always be about our narrow interest(s) focus and that we want and need to listen to what others are interested in to have effective and meaningful relating and communication with others. Having narrow focus of interest(s) is something that many of us get to know a lot about and become “expert” in and then go on to University, get degrees, and make careers in those areas of interest and contribute greatly to this world. Does that sound like Aspergers in that high-functioning sense is a disability at all? While it is true that Aspies have narrow focus interest(s) it is also true that not all will be doomed to only talk or share about them. Many of us will learn as I have learned a long time ago, there is a time and place for this. Making a career out of one’s narrow focus of interest(s) as I have like so many others with AS is an incredibly rewarding part of having AS because we get to work in areas that we truly are totally and deeply interested in. And, just another fact, to dispel stigmatizing stereotyping of those with AS, when you love what you are interested in genuinely and deeply it becomes a burning passion that helps you to be much more effective and skilled in your chosen profession and I know this feels for me like it’s not even really work. It is such a passion and I am freely driven out of interest and love of what I do, know, and have been educated in, to, in my case, help others heal, recover, or become unblocked in goal achievement, identify issues that they want to change in their lives, and help people with personal and on-going self-understanding and self-development. People (certainly in adulthood) with high-functioning Asperger’s Syndrome can and do expand their narrow focus of interest(s) in vibrant, practical, and exciting ways that contribute to our economies and the betterment of humanity and meaningful ways of working with and for people that improve the quality of their lives in wide-ranging fields including engineering, tech innovation, psychology, philosophy, science, research, medicine, law and the list is endless.
10. That adults with Aspergers are mentally ill: This is an absolute false-hood. A terribly stigmatizing stereotype that does not apply to Asperger’s or the Autism spectrum at all. It is true that some people with Asperger’s due to the nature of navigating deficits (to “normality – whatever that is) do develop some mental health challenges. But Asperger’s itself, is not at all a mental illness. This is why I’ve always wondered why it is seen by psychiatry to be fit into (in their opinion/judgment) the “Bible of Psychiatry” the DSM – now with version 5 being in use though being boycotted by many professionals because it has long-since been perceived by many professionals as being a rather arbitrary and pseudo-science at best collection of largely unchallenged pathologizing of humanity now driven primarily by U.S. Big Pharma with an agenda to make more money for all by taking it to such an extreme in the pathologizing and categorizing (by a small unregulated and not peer-reviewed “working group” of psychiatrists) people to the point that as noted Australian Psychiatrist, Dr. Niall McLaren, was quoted on my Psyche Whisperer Radio Show in an interview we did (or he may have said this to me privately – as having said, the DSM is so out of control and pharmaceutical industry driven (prior to the publication of the current DSM version 5) that “you could now diagnose a ham sandwich” with a variety of “psychiatric illness” which biopsychiatry has now since the “decade of the brain” (for what that is worth) in the 1990’s has laid claim to the scientifically un-proven illusion that “mental illness is a brain disorder”. This too is bunk. Abject false “flawed-theory” put forth as if it were proven science, which it is not. The various named aspects of various degrees of autism now included in the DSM-5 under the categorization of “Autism Spectrum Disorders” must be challenged in so many ways because Autism on any point of that spectrum has nothing to do with “mental illness”.
© A.J. Mahari, July 26, 2014 – All rights reserved.
Individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much
A groundbreaking study suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy—rather they feel others’ emotions too intensely to cope.
People with Asperger’s syndrome, a high functioning form of autism, are often stereotyped as distant loners or robotic geeks. But what if what looks like coldness to the outside world is in fact a response to being overwhelmed by emotion—an excess of empathy, not a lack of it?
This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with new thinking about the nature of autism called the “intense world” theory. As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an hypersensitivity to experience, which includes an overwhelming fear response.
“I can walk into a room and feel what everyone is feeling. The problem is that it all comes in faster than I can process it.”
“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.” Virtually all people with ASD report various types of oversensitivity and intense fear. The Markrams argue that social difficulties of those with ASDs stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10. If hearing your parents’ voices while sitting in your crib felt like listening to Lou Reed’s Metal Machine Music on acid, you, too, might prefer to curl in a corner and rock.
But of course, this sort of withdrawal and self-soothing behavior—repetitive movements, echoing words or actions and failing to make eye contact—interferes with normal social development. Without the experience other kids get through ordinary social interactions, children on the spectrum never learn to understand subtle signals.
Phil Schwarz, a software developer from Massachusetts, is vice president of the Asperger’s Associaton of New England and has a child with the condition.
“I think that it’s a stereotype or a misconception that folks on spectrum lack empathy,” he says. Schwarz notes that autism is not a unitary condition—“if you’ve seen one Aspie, you’ve seen one Aspie,” he says, using the colloquial term. But he adds, “I think most people with ASD feel emotional empathy and care about the welfare of others very deeply.”
So why do so many people see a lack of empathy as a defining characteristic of ASD? The problem starts with the complexity of empathy itself, which has at least two critical parts: The first is simply the ability to see the world from the perspective of another. The second is more emotional—the ability to imagine what the other is feeling and care about their pain as a result.
The fact that autistic children tend to develop the first part of empathy—which is called “theory of mind”—later than other kids was established in a classic experiment. Children are asked to watch two puppets, Sally and Anne. Sally takes a marble and places it in a basket, then leaves the stage. While she’s gone, Anne takes the marble out and puts it in a box. The children are then asked: Where will Sally look first for her marble when she returns?
Normal four year olds know that Sally didn’t see Anne move the marble, so they get it right. By 10 or 11, mentally retarded children with a verbal IQ equivalent to three-year-olds also guess correctly. But 80 percent of 10-11 year-old autistic children guess that Sally will look in the box, because they know that that’s where the marble is and they don’t realize that other people don’t share all of their knowledge.
It takes autistic children far longer than others to realize that other people have different experiences and perspectives—and the timing of this development varies greatly. Of course, if you don’t realize that others are seeing and feeling different things, you might well act less caring toward them.
But that doesn’t mean that once people with ASD do become aware of other people’s experience, they don’t care or want to connect. Schwarz says that all the autistic adults he knows over the age of 18 have a better sense of what others know than the Sally/Anne test suggests.
Schwarz notes that nonautistic people, too, “are rather lousy at understanding the inner state of minds too different from their own—but the nonautistic majority gets a free pass because if they assume that the other person’s mind works like their own, they have a much better chance of being right.” Thus, when, for example, a child with Asperger’s talks incessantly about his intense interests, he isn’t deliberately dominating the conversation so much as simply failing to consider that there may be a difference between his interests and those of his peers.
In terms of the caring aspect of empathy, a lively discussion that would seem to support the Markrams’ theory appeared on the Web site for people with ASD called WrongPlanet.net, after a mother wrote in to ask whether her empathetic but socially immature daughter could possibly have Asperger’s.
“If anything, I struggle with having too much empathy” one person commented. “If someone else is upset, I am upset. There were times during school when other people were misbehaving, and if the teacher scolded them, I felt like they were scolding me.”
Said another, “I am clueless when it comes to reading subtle cues, but I am *very* empathic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”
Studies have found that when people are overwhelmed by empathetic feelings, they tend to pull back. When someone else’s pain affects you deeply, it can be hard to reach out rather than turn away. For people with ASD, these empathetic feelings might be so intense that they withdraw in a way that appears cold or uncaring.
“These children are really not unemotional, they do want to interact, it’s just difficult for them,” says Markram, “It’s quite sad because these are quite capable people but the world is just too intense, so they have to withdraw.”
Article written by Maia Szalavitz
Maia Szalavitz writes about the intersection between mind, brain and society for publications like Time online, the New York Times, Elle and MSN Health. She is co-author, most recently of Lost Boy , the first memoir by a young man raised in Mormon fundamentalist polygamy, Brent Jeffs. She is senior fellow at Stats.org, a media watchdog organization.
Asperger’s Syndrome Does Not a Murderer Make
The horrifically tragic mass shooting at Sandy Hook Elementary School in NewTown CT, U.S.A., Friday December December 14, 2012, which took the lives of 20 beautiful and innocent children and six brave adult educators left most people, not only in NewTown, o the United States, but all over the world, shocked and grieving.
I want to extend my deepest sympathies to NewTown, and all who lost loved ones in this senselessly violent and tragic way. May the tragic and senseless murder of these innocent children be the tipping point for change in the United States, not only gun law change, but a change from a culture of violence to a more peaceful culture. These angels need that meaning to be attributed to their short lives and senseless deaths.
Anything less than this will just be another political failure to truly represent what the majority of Americans want, safe schools, a more peaceful society where innocent children and educators are not murdered in mass shootings leaving not only a country, but a world grieving. These children cannot be lost in vain. Remember them with action for change in your culture and your gun laws and mental health system changes so that more can be helped before they end up doing what this shooter did.
What is also very concerning for those of us with Asperger’s Syndrome and our loved ones is that the shooter who perpetrated this horrific violence in NewTown apparently had Asperger’s Syndrome. This has lead many in the media to give a lot of stigmatizing and inaccurate inferences about Asperger’s Syndrome.
Asperger’s Syndrome is not a mental illness. It is also not something associated with planned violence, such as Adam Lanza’s mass shooting at Sandy Hook Elementary School.
Media in the United States, in particular, are now trying to correct some of their errors first reported with the, I think, still unsubstantiated shooter’s Asperger’s Syndrome. However, even in their attempts to make corrections, correctly informing people that Asperger’s Syndrome is on the Autistic Spectrum, at the hightest functioning end of that spectrum and that there is no evidence whatsoever that it is associated with planned violence at all, some programs, like a guest on the Dr. Drew show last week, while making clarifications in one paragraph, then followed that up by lumping (unintentionally I think, but still stigmatizing and the error was not corrected) Asperger’s in with a list of Mental Illness the guest expert was talking about. This is not helpful.
People with Asperger’s Syndrome are not all the same. Nor do they all have every trait or criteria that you may have heard about or read about when it comes to the question, “What is Asperger’s Syndrome”
I have also seen “talking head” experts on a wide variety of shows who have said that while there is absolutely no correlation between Asperger’s Syndrome and “planned violence” they have then said something about people with Asperger’s being aggressive or angry or implying some possiblity of violence but just not “planned”. Without further explanation, this too is stigmatizing and confusing for those who would misunderstand or still think that people with Asperger’s would be dangerous like that shooter in Newtown.
What they have failed to make clear is that some people with Asperger’s Syndrome, due to stress, frustration, over-stimulation (as others on the austistic spectrum can also exhibit) can, at times, have what are known as meltdowns. That’s when one just gets overloaded and stressed out and for some there is some anger or aggression in blowing off that steam so to speak. But this has nothing to do with shooting anyone or attacking anyone. This is a personal push-back against their own frustration which is turned more inward than outward and which is not the kind of violence that a mass shooter perpetrates at all. Not even close or to be associated with planned violence and killing people at all.
Whatever the outcome of further understanding of that shooter or lack thereof, what is very important, right now, is that people understand that people with Aserpger’s Syndrome are not shooters. That shooter in NewTown did what he senselessly did out of much more than a “lack of empathy” and if he has Asperger’s it is not the reason why he make the choices that he did. People with Asperger’s do not “lack empathy” the way that is often stated and that the DSM Criteria lists. And why is Asperger’s, which is not a mental illness in the “Bible of psychiatry” anyway?
People with Aserpgers do have empathy. They feel empathy. They are often very sensitive and emotional and respectful of people’s pain and feelings. What is vastly different for many with Asperger’s than Neurotypicals is the lack of expression of that empathy often and/or the reality that one with Aspergers can express empathy often in ways that are unlike the ways Neurotypicals understand it. Therefore, it is often not recognized.
Much of what you might read about Asperger’s on the web, does not fit all people diagnosed with it. Each person with Asperger’s is an individual. However, what we do know is that people with Asperger’s do not plan and execute violence.
To make the mistake of associating people with Asperger’s with that NewTown shooter, even if it turns out that he had Aspergers, it was likely just one of what is likely other diagnoses, or severe issues/problems that he had. None of which justify in any way his actions.
The media needs to stop running with labels that can have a very damaging effect on the lives of countless people, in this case with Asperger’s Syndrome, and stop giving us “expert” explanations of Asperger’s from Neurosurgeons like CNN’s Dr. Gupta, or doctors like Dr. Drew, who is a medical doctor and an addictionologist but not a psychiatrist or psychologist and instead here from learned experts – neuropsychologists, who can speak much more clearly about what Asperger’s Syndrome is and that it is not correlated whatsoever with planned violence.
It must also become more of a talked about reality that these mass shooters do not just “snap”. They cannot “snap” one minute and have all those guns, bullets, body armour, oh just ready to go now can they?
Does the media ever stop to consider that they need to stop sensationalizing these criminals, these (mostly in the U.S.) mass-killers who often, regardless of issues, reasons, etc, are firstly, not always mentally ill at all, as was pointed out by Dr. Michael Welner, a Forensic Psychiatrist on The View and a couple of other shows. He talked about how these shooters make a choice to avenge their grievances or failures in this manner because they can go from feeling invisible and unknown – uncared for or not cared about and unimportant (ways he says they often feel in their lives) to infamous in seconds with endless media coverage and they leave in the wake of their senseless (selfish) violence lost loved ones, many grieving loved ones, and a media-driven notoriety that lives on and fulfills their desire to be seen, to gain power when they feel helpless, to avenge what they are angry and/or depressed about – not that any of that is reason for killing anyone.
It is high time also that the media realizes that not all of this violent behaviour is the result of mental illness. They talk a lot about psychotic breaks (not a symptom of Asperger’s by the way) and maybe for some of these killers (many are psychopaths don’t forget) they may well have a psychotic break and for some that psychotic break is actually the result of just having started or suddenly stopped psychiatric medications – or perhaps, there might be side-effects and damage being done to the brain by these drugs which many professionals say are the basis for chemical imbalances in the brain – not mental illness – it’s not a chemical imbalance in the brain, it’s the psychiatric meds that upset and wreak havoc on the chemcial balance, thus creating a chemical imbalance in the brain. A great book on this topic is Robert Whitaker’s “Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America.” (A rise in mental illness that several professionals associate directly with the rise in biopsychiatry, the notion (unproven psuedoscience) that “mental illness is a brain disease” that requires “psychiatric medication”.
I have not seen one U.S. media interview with an actual expert in Asperger’s Syndrome to provide a comprehensive understanding to people about why even is this shooter had Asperger’s it is not the reason he made the choice, that’s right, choice that he did to senselessly and selfishly murder those 26 people, may God rest their souls and be with their loved ones as they grieve the loss of each victim, gone to soon, and gone at the hands of a person who wanted to be known more for something unthinkable, tragic and heinous – someone who just didn’t care about anyone or anything but that – not even himself.
© A.J. Mahari, December 22, 2012 – All rights reserved.
Taylor Morris – Autism and Asperger’s Advocate – Interview A.J. Mahari’s Psyche Whisperer Radio Show
On Monday September 20, 2010, at 7pm EST, Author and Life Coach, A.J. Mahari, herself an adult woman with Asperger’s Syndrome interviewed Taylor Morris, who is a 17 year old woman, with High Functioning Autism, a straight A student, and advocate for Autism and Asperger’s Syndrome.
Taylor is very articulate young woman and she has made several video. She has an incredible following of her videos. Taylor describes and explains a lot about her experience in life as someone with Asperger’s Syndrome in ways that can help people with Asperger’s better understand it and also helped their loved ones better understand. The more we can understand and respect each other across the differences of what it means to be a “neurotypical” or a person with Asperger’s Syndrome the richer all of our lives will be.
Asperger’s Syndrome, as I know from my own life, and as I stress on my own Aspergers and Adults website is a different ability – not a disability. It brings with it challenges, but, also many blessings and gifts. Please watch Taylor’s video below and read the post re-posted here from her blog at Meet Taylor Morris, entitled, “My Social World: Inside an Autistic’s Psyche” You can also watch more video from Taylor on The Psyche Whisperer Blog
© A.J. Mahari, September 20, 2010
My Social World: Inside an Autistic’s Psyche
By Taylor Morris
Just before class I hear a necklace jingle around the neck of a pretty girl. She is gossiping with another pretty girl, who is twirling her pretty hair and talking about the awesome party where some other pretty girl ruined her dress with a beer stain. At the other end of the class, I listen to yet another pretty girl complain to her pretty best friend about how her make-up wasn’t done just right — she is not pretty enough. Meanwhile I’m on my own, at my desk, looking at my calloused hands and unkempt nails thinking: “The jewelry, the hair, the clothes and the make–up — it’s all their social games. Their value, their conversations, their lives. How do they devote so much time and money to that? How do they know just what to say to get “groupies” to follow them?” I sigh and shake my head, thinking of how I don’t own a dress, how I wear the same earrings every day, and how I never seem to understand when they speak in what seems like code. With this, I’m once again reminded of how I’m an unwitting member of a social “game” I don’t really know how to play. Having an Aspie mind is a hard-enough social challenge; add to that the complexities of a high school girl’s social world and hierarchy and you have just added insult to injury.
Over the years I have learned to associate the word “social” with scenes like these. I never have understood the social culture people practice. I just don’t have the ability to “sense” like neurotypicals because my thoughts are literal, not intuitive. My mind is heuristic, so I behave in accordance with what I see and directly experience. I can’t “sense” whether or not I’m winning over a person. I have to wait and see how they treat me in the weeks after I have met them. This creates a whole new challenge in meeting people and making friends, especially girlfriends.
However, I have learned to use my style of mind to my advantage. For example, I use heuristics to decide which people I should and should not try to be-friend. I know from experience that girls who hang out in large groups of other girls tend to be mean to me. Because of this, I know to not try to connect with them. Same goes for girls who wear shirts worth more then my earrings, girls who wear more make-up in a day than I do in a year, and those who match their entire outfit a bit too perfectly. This may seem ridiculous because everyone knows someone who wears a mountain of make-up but is still very nice. Even so, over the years I have found that these heuristics work well. Many of the people I have excluded often did end up being the exact kind of people I want to avoid. I know these “rules” in deciding who I will try to interact with are polarizing to an extent, but they are how I have used my mind to find my way through a social game. Using this method, I have successfully identified girls who became my best friends. They don’t judge me for being slightly different and don’t hold it against me for not having the best sense of style. They have judged me by my character, and that is all I ever really wanted.
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Do Aspies Have Empathy For Others?
Almost every definition I’ve ever read about Asperger’s Syndrome lists among the traits and/or characteristics attributed to those with it as not being able to feel empathy for others – as not having empathy for others. I have Asperger’s Syndrome. I have tremendous capacity for empathy for others. I have continued to increase my ability to express that empathy. Do Aspies really lack empathy or is it felt, experienced, and expressed differently? Perhaps in ways that neurotypicals (NT’s) do not recognize as empathy or do not experience as being the way they expect to be given empathy.
As I’ve likely written about in other contexts related to Asperger’s Syndrome, it seems reasonable to say that there are many differences in those who have Asperger’s Syndrome (AS). Men and women seem to have differing ability and context as well as understanding when it comes to something like empathy and compassion as well. (Attwood) There is still a difference not only in the way boys and girls are socialized, what those social norms contain, but also in what society expects from boys versus girls. Attwood, in his book, “The Complete Guide To Asperger’s Syndrome” talks about this and concludes that females find ways to learn to express and to care-give in ways that perhaps many aspie males don’t.
In my own experience with empathy, as an adult with AS, I know that I feel tremendous empathy for others. That can be someone I am talking to, sitting in a room with, or someone I see on the evening news who has suffered a tragic loss. There is also a very profound sense of connectedness to humanity in its macrocosm that means I experience a lot of empathy and compassion for a lot of world events and things that I see on the news and so forth that aren’t a part of my own life.
A lot of this empathy that I have and feel that is palpable within me there isn’t maybe as much expression of it at times. It depends if I am coaching with someone, or writing. If I am just in my own world, doing my own thing, in the splendor and wonder of my narrow focuses of interest (which are in themselves paradoxically vast) then there is much more that I feel that others can’t know – that isn’t measurable.
The way that Asperger’s Syndrome is defined, like many other pervasive developmental disorders, or even mental illnesses pathologizes and categorizes differences in what are highly divisive and negative ways. There is little if any consideration given to the different ability of many with Asperger’s in and through which things are felt, experienced, processed, and expressed differently. Not being the same as the feelings, experiences, processing, and expression of neurotypicals (NT’s) the presumbed NT’s who set out the defining criteria of Asperger’s Syndrome fail to give consideration to different ability. What is different about those with AS in the minds of those defining it and those who continue to forward that narrow definition of it, despite endless individual manifestations and expressions of AS from all the people who have it, is that there is a tremendous lack of tolerance for difference.
It’s as if there is some segement of society, “professionals” (?) that are charged with defining the ever-illusive “normal”. It’s flawed logic to begin with. It leaves no room for each to march to the beat of his or her own drummer, to be introverted versus extroverted without scrutiny and/or without penalty of judgment and being patholigzed.
I don’t happen to think there is anything particularly horribly wrong with my brain as someone with Asperger’s Syndrome. Again, the differences between aspie brains and NT brains, see the NT’s pathologize the aspie brains as “dysfunctional”. Why not just different? For all that people with Asperger’s have contributed to this world through the unique genius that is a bonus to our differences, geez, I don’t see that being categorized as negatively as the ways in which we “don’t get NT social”. Who needs it? I mean I straddle that line. I have pushed myself way far to “get it”. However, “getting it” to some extent, and being able to connect socially, feel and express empathy and receive it doesn’t mean that I want or need to be in that “space” that often. I just don’t. I do find myself in that space often in terms of the work I do, writing I do, and knowing what others need from me at times. The rest of the time, time I can have for me, in my splendid aspie world, is time cherised in that world. That is not a statement about egocentrism or being unaware. Again, it’s difference.
The egocentrism of my Asperger’s is something that I am now very aware of. There are ways around it. Do they feel natural – no. Will they ever – I doubt it. Does it matter to me – not any more.
There are also many feelings, such as love, empathy, compassion, and so forth, that are compromised to varying degrees with individuals with Asperger’s Syndrome. This does mean they can’t continue to learn ways to increase understanding these emotions and their expression. Within the social impairment (so called – I’d say again, different ability) of Asperger’s Syndrome in terms of social relating does feeling or expressing empathy become more challenging or difficult for many with AS, yes. This has to do with the different ways that we process information. It has to do with the NT social context that most with AS, even when we understand it to varying degrees, do not find it to be the way that we engage, the way that we would relate that would be first-nature to us.
Many people with Asperger’s Syndrome have a capacity for empathy. Some more so than others. Some maybe not so much. Again, Asperger’s Syndrome is not the same for each and every person who has it. However, the blanket statement in the pathologizing DSM-IV definition of Asperger’s Syndrome (which by the way is not even slated to exist as such in the up-coming DSM-V professionals now preferring it just be lumped in with autism so that everyone can get even more confused) that people with Asperger’s lack empathy is not all that accurate. It is a statement without explanation. A statemment, black-and-white as it is, that doesn’t take into account each aspie’s individuality, and the reality that people can feel more than you can know. This is especially true when much that can be felt by those with Asperger’s Syndrome isn’t met with the same need for expression, socially or otherwise, often as it is for those who are neurotypical.
This begs the question how professionals can even really accurately assess what someone with Asperger’s feels or has the capacity to feel. How can you know if I lack empathy just because perhaps I didn’t express something that was wanted, coveted, expected or that NT’s define as a “social norm”?
You really can’t, can you?
Should we as people with Asperger’s Syndrome, make up some book and pathologize NT’s who have a greater need and/or desire to relate many things, empathy being perhaps one of those feelings, to others more often than we do because to us that is not “normal” or necessary?
I believe that most aspies do feel empathy. I also believe that they want to experience empathy from others but that often both are lost in terms of expression and reception to the different ways in which we think, process information and to the different degrees to which we feel the need to actually “socialize”.
That does not a lack of empathy make. That makes for difference. More difference that is not understood, not tolerated and that is pathologized by the “powers that be” who decide how it is that we are all “supposed” to relate to one another.
Small box that, don’t you think?
© A.J. Mahari, April 13, 2010 – All rights reserved.
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American Psychiatric Association DSM-V – Asperger’s To Be Put In Same Category as Autism and PDD’s
The American Psychiatric Association wants to include what is currently known as Asperger’s Syndrome in the same category or classification as autism and other pervasive developmental disorders (PDD’s). As a person with Asperger’s Syndrome I felt confused and angry when I first found this out. I found out when I saw a tweet from CNN’s Anderson Cooper. How in the world can this make any sense? While Asperger’s Syndrome (AS) is on the autistic spectrum there are vast, notable, and important differences between AS, classic autism, other PDD’s, and even autistic spectrum disorder (ASD). What do you think? I can’t understand how this will benefit anyone, least of all those with Asperger’s Syndrome.
(CNN) — “People with Asperger’s syndrome would be included in the same diagnostic group as people with autism and pervasive developmental disorders, according to new guidelines under consideration by the American Psychiatric Association.
Psychiatrists are in the process of revising the guidelines, known as the Diagnostic and Statistical Manual of Mental Disorders. The manual has implications for how psychiatric drugs are developed and prescribed, what treatments get covered under insurance plans, which approach doctors take in treating their patients, and how patients view their own identities.
Anyone who has received a diagnosis from a mental health professional has most likely had his or her symptoms defined by the guidebook.
The revisions, which will be considered for the DSM’s fifth edition, due in 2013, were made public Wednesday at DSM5.org.
Scientifically, the distinction is correct; the research on people with these conditions has shown that Asperger’s is on the mild end of the spectrum of autistic disorders, said Dr. Michael First, professor of clinical psychiatry at Columbia University, who worked on the version of the DSM that is currently in use.
Of concern is that Asperger’s has been destigmatized and autism has not, he said. Over the past 15 years, communities have formed around Asperger’s, and the condition has taken on more positive tones with the notions that Albert Einstein and other intellectual luminaries may have had it.
Given that Asperger’s has become more acceptable, First favors keeping it as a diagnosis.
“This is a case where the science of the decision and social ramifications of the decision are separate,” First said.
But the DSM does not make diagnoses based on the stigma of one group over another, said Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, who is on the American Psychiatric Association committee looking at autism.
“Many people prefer to use the term Asperger’s, and we’re not saying that you can’t describe yourself that way,” she said. But the research shows “no scientific evidence that there are separate syndromes.”
Source: CNN Health
Catherine Lord,(member of the American Psychiatric Association committee looking at autism) quoted above, by CNN, said, “… the DSM does not make diagnoses based on the stigma of one group over another” and that “… the research shows ‘no scientific evidence that there are separate syndromes.’ “ Well, might be too commonsense to actually consider anything to do with the stigma or how it can effect countless lives right? I am not sure that anyone has tried to argue that Asperger’s and classic autism or ASD are “separate syndromes”. I think appropriately the distinction that was made, and I think that needs to continue to be made, has all to do with degrees of the autistic spectrum. After all it has long-since been referred to as a spectrum with understandable reason. That is not the same as trying to say they are separate. However, how on earth can anyone then define them or classify them as the same just because they can say there isn’t any “scientific evidence” to prove they are separate? Say what?
This leads me to wonder what is really behind this. I say that because Lord’s “reasoning” doesn’t seem very sound. To say that AS is the same as autism – or should be classified that way – defined that way – diagnosed that way – because there isn’t any “scientific evidence” that they are separate syndromes flies in the face of the vast differences that have been identified and acknowledged for some time now. Differences that matter. Differences that help people to understand themselves and to learn to cope with all that they have to cope with. Differences that do, I think, negate the sameness that would justify lumping them together or merging them.
What could be helpful about going backwards in definition, experience, and understanding?
And it gets worse really, also quoted by CNN on Anderson Cooper’s 360 Blog: “Dr. Charles Raison, psychiatrist at Emory University, acknowledged that “autism” is a “frightening word,” and that moving Asperger’s under autism may pathologize it more. Still, it is more accurate to call it a form of autism, he said.”
So, despite pathologizing those of us with Asperger’s Syndrome more, Dr. Raison believes that being more accurate and merging the DSM definition is more important. Who will this possibly benefit? In fact, I know as someone with AS myself, that many of us actually work with and talk often with parents of children with varying degrees of autism on the spectrum up to and including classic autism and that the fact that Asperger’s has made it somewhat out from under a lot of stigma and pathologizing to be more understood – not just negatives but strong positives too – long enough to help others understand and to give hope that the autistic world (worlds really) can often, one way or another, to one degree or another, connect with the neurotypical (NT) world.
It’s just that no matter what you classify all of us as, we can’t, and many don’t want to anyway, conform to NT thinking. This means that neurotypicals need to stop trying to change their aspie or autistic kids (adults even) into NT’s. It’s just not in the hard-wiring. Difference needs to be respected. What NT’s define as disability is truly a different ability – perhaps one NT’s still don’t well understand. For all the really brilliant, creative, and innovative people throughout history identified as likely having had Asperger’s Syndrome, NT’s – yes even the people on the DSM-V committee – need to ask themselves where would the world be without the tremendously valuable contribution of many with Asperger’s Syndrome whose brains were, thankfully, wired differently?
I think it reasonable to conclude that this proposed merger of Asperger’s Syndrome with Autism and PDD’s is to serve some function or purpose for those who define things and diagnose things. It can’t possibly be being forwarded to help anyone on anywhere on the autistic spectrum.
The revisions are being considered for the DSM’s fifth edition, due in 2013. They were made public Wednesday at DSM5.org, and are available for public comment until April 20, 2010. I would sure urge anyone who, like myself feels very strongly that this change does not make any sense at all to let this committee know how you feel. Every voice counts.
If they make this change it will cause a tremendous amount of confusion. I don’t think people with Asperger’s Syndrome (AS) aren’t aware that AS is a form of autism and that it is described as milder and has its own traits. Traits which of course not all people with AS have in the exact same ways or numbers or to the same degree.
However, to think that if these changes are made in the DSM-V that someone like myself would be labelled autistic right along with someone who has classic autism or another form of a pervasive developmental disorder (PDD) (no disrepect meant to these groups of people) the result could only be massive confusion from all who are not professionals. It would also mean that the ground gained in that Asperger’s Syndrome has travelled out of that abyss of stigma would be compromised at best and perhaps lost at worst.
It would mean being even more misunderstood than people with AS are now. It might also lead people with relatives with classic autism to question why their loved ones are one way and many of us are quite different – if we were all diagnosed or “labelled” the same. It would likely also mean that many with AS will have a much more difficult time finding appropriate services. For adults and women with AS in particular it may just leave us even more invisible in terms of any support or help that many need than has been the case to date.
What do you think? If you have Asperger’s Syndrome, or a loved one with it, does this make any sense to you? Do you want to have to try to explain to people that you have autism? Can’t you just hear it now? Who will understand? How can this be a positive change for anyone?
© A.J. Mahari, February 12, 2010
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