Misdiagnosis of Asperger’s Syndrome in Lorene Amet’s son’s life lead to years of dangerous psychiatric medications that caused him to end up being mentally ill as a result of the psychiatric drugs and their side effects. People need to start educating themselves against the medical model of psychiatry – Biopsychiatry nothing more than flawed theory put forth as “real” science when it is “junk” science – Big Pharma money to sell more drugs and the welfare of those in need of help be damned.
by Lorene Amet
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.
Hi there! I just wanted to add a note in here that I am currently moving all the contents of this site from html pages to this new blog theme I just designed. So please bare with me while most content will be in this new blog’s design, some in the one step back web template I was using and still other pages, one make-over behind that. Such is web work. I have over 10 websites with hundreds, if not more pages. Time is not my friend, let alone organization in all of these changes.
Until I get all the content in this new blog theme in the left hand side bar you can find links to site pages not yet included in this new version of this site.
Hope you like this site. Hope you find things of interest here. I will be much more active on this site from now on. I have kind of left it for too long. I was busy worrying about all that I do online and, to be very honest, worried about being judged from having Asperger’s and having people say (and they do say it, believe, me) that because I have Asperger’s I must not be recovered from the mental illness I had and things of that nature. I have let that carry way too much weight and those days are now over. I am also a Life Coach. Some might think that having Asperger’s and being a Life Coach isn’t possible. This, I too worried about. But, no more! I realized I had been allowing myself to feel shame for who I am in total. That stops now! I believe in sharing all that I have to give on this topic and life experience as well. I guess I’ve been better at writing about and sharing online things that I recovered from, transcended and Asperger’s isn’t something that I can change, fix, recover from, or totally transcend.
I now accept, acknowledge, and appreciate the gift that this in my life as it so is the core of much of my “different ability”. We can empower ourselves, Asperger’s and all. We can take our strengths and do incredible things with them.
Please do share your thoughts. If you have questions or topics you’d like me to blog about please let me know on my new Asperger’s Syndrome and Adults Facebook Page. You can join me there by clicking the “like” button below and/or clicking on the page title below:
© A.J. Mahari May 30, 2010 – All rights reserved.
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
What is the impact of Jenny McCarthy’s experience with her son Evan wherein, according to McCarthy, her son is cured? Is he cured? Do people with autism or Asperger’s want to be cured? Is it something that needs fixing?
Jenny McCarthy, a self-professed advocate for her son Evan, who was diagnosed with Autism, and for other children who have been or will be diagnosed with autism, has written a memoir about her experience “Louder Than Words: A Mother’s Journey In Healing Autism“
The main thrust of McCarthy’s memoir, aside from telling the story of a very dedicated mother who has fought hard for her autistic son, centers around what McCarthy terms Evan’s “recovery”.
McCarthy, appearing on The View, Live with Regis and Kelly, Oprah, and Larry King to name the shows I saw her on, in each interview first spoke of Evan as recovered from autism. She would then, later in each interview, sort of back track from the word “recovery” and point out that while Evan does now attend a regular school and interacts much better and so forth, he does still have challenges.
What is the impact, generally, of this on those with Asperger’s Syndrome?
This might be a very difficult thing to assess. However, the specific autistic challenges that McCarthy’s memoir deals directly with the journey that the intervention strategies, treatments, and interventions, of more “classically autistic children” require. While not agreed upon by all professionals totally, there are doctors who support McCarthy’s strategies and results. Though the doctor who was on with her on Larry King was careful to say that results of these treatments vary widely in autistic children and the reasons for that aren’t fully understood. It is agreed, however, that the earlier these alternative treatments are attempted the greater the likelihood of favourable results.
It seems to me that to some significant extent a lot of what is being fought for by McCarthy and others for their autistic children are things that most children with Asperger’s Syndrome don’t ever lose (totally). Things like some eye contact, speech, the ability, (on a wide spectrum that varies in degrees) to be able to relate and be interactive. The question that begs asking here is do those with Asperger’s even require the same intervention? Will they benefit from the same things that McCarthy’s son did?
What is the impact, specifically, of this on those who are adults with Asperger’s?
I know for myself, speaking as an adult with Asperger’s who didn’t find out until I was 40 years old, it personally causes me a little bit of grief. Grief that I didn’t find out I had AS when I was a child. Grief that as a female much of what I was caused difficulty by was even more invisible than it is for most young aspie boys.
Grief that causes me to wonder, briefly, how would my life have been different – or if in fact it would have been different – if in fact it would have been different – if I had a mother who went to bat for me (which I did not have at all) like McCarthy has for her son. Grief just thinking about the what-ifs which is not a place I recommend any adult with AS stay in long. But it is only human to go there at times.
Self-reflection on these feelings and this grief, I think is necessary at times, for greater self-understanding, and in the end, a greater self-acceptance too.
How it impacts me, as someone on the specturm, who has Asperger’s is that I wonder about the quest to normalize autistic children. It’s a catch-22 of sorts. It hits at the question, are we all supposed to be the same? How does this desire and/or quest to make every child “normal” effect the way that we value or fail to value inherent differences? Does it send a message that what is perceived and defined by
many as a disability is a less than way of being. This is an attitude that leads to discrimination and marginalization of inherent worth.
McCarthy’s memoir, “Louder than Words” does tell a compelling story. It does offer hope for a growing number of parents and their autistic children. The statistics now say that 1 in 150 children will be diagnosed with Autism. Those numbers keep rising. Autism, in all its forms, is an epidemic, in North America for sure, and perhaps also in other countries.
As an adult with Aspeger’s Syndrome, however, it feels like a catch-22 of sorts to me – this entire issue of getting the most autism out of a child type of thing. For me being on the autistic spectrum continues very much to be an on-going paradox.
It has its amazing aspects and it has its challenging, frustrating, and still at times, painful and/or emotionally difficult aspects for sure. The question that comes up for me is would I really want to be changed now if that was possible or ever to be possible? I think, in spite of everything, my answer is – no. I have come to value my differences. I have come to find ability from the depths of what are challenges and inherent differences between myself and those who are neuro-typical (NT). In other words I am finally finding peace with being who I am. I am who I am in all that means. Asperger’s is not the some total of who I am but it is an important part of who I am.
I know that the important distinction (perhaps among many others) between Asperger’s and more profound manifestations of autism – or classic autism – has a lot to do with the differences that those of us with Asperger’s have in terms of being verbal, being able to communicate and not being “classically trapped” in a separate totally internal and separate world. However, I will make the point that there are times in my life, even now, when while I might know differently intellectually, there are times when being an aspie, primarily in the social arena, leaves me feeling like I know a little bit about what it might like to be that more classically autistic child. Socialization, is still, at times, and in many ways, for me, not at all like I’ve heard it described by NT’s and it can still cause frustration, pain, and lostness. But, as this is my own personal journey through this life, I take it that there is great purpose, even in that.
I do at the same time very much recognize the battle and the validity and important of this battle for these more “classically autistic children” however. Many of them are reported to seem rather normal until a certain age (or set of circumstances – some believe after vaccinations for example) when suddenly they withdraw inward and they stop communicating, stop making eye contact and more and more are lost inside of themselves in more profound forms of “classic autism”. To be saved from being trapped within I think is huge and important. To be helped to be able to communicate and to interact – to whatever degree – can make a life with autism much more liveable, especially for those around that child who love and want and need to interact with them.
The interesting thing in all of this too, in my opinion, is that much of what McCarthy talks about has having helped her son Evan, the wheat and gluten free diet, and addressing the yeast in his system, for example, along with the other methods used to “rehabilitate” him, referred to still as alternative treatments, do not work the same for all children with autism. Even all the children who are now able to take advantage of what McCarthy did for her son, the results vary widely. I wonder what information, if any, this fact, may well yield that may shed more light on the issue of whether or not what McCarthy’s son and others like him have actually experienced. Is it recovery? Does it have to do with the degree to which they were autistic? Can this be measured? It seems in many ways, for me, to raise more questions than this held out “cure” actually provides.
And another question that crosses my mind is of course related to causation. Can autism really be cured without knowing what causes it? What leaves one child classically or more profoundly autistic and the next with Asperger’s Syndrome, for example? Is it a case of different causes?
Is Jenny McCarthy and her son Evan’s journey revolutionary? Is it more typical than is known? Will it become more typical? Is it too cost prohibitive for way too many families?
And of course, I have to add here again, that there needs to be services and supports put in place for adults no matter where they fall on the autistic spectrum. Not every parent as McCarthy’s fortitude, reserve, or even financial choices. Not all autistic children treated like Evan will have the same outcome. Therefore, it is not just adults with AS that need services and supports because today’s aspie kids and autistic kids will be tomorrow’s invisible adults on the autistic spectrum for whom service is only a wished-for thing and certainly is not, in reality, tangible in any meaningful way.
© A.J. Mahari October 2, 2007 – All rights reserved.
A.J. Mahari is a Life Coach who, among other things, specializes in working with those with Asperger’s Syndrome and their partners, relatives, or friends. A.J. has 6 years experience as a
Life Coach and works with clients from all over the world.
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