I wanna get free, ride into the sun

How a person with Asperger’s sees the world

When a person has an autism spectrum disorder, like Asperger’s, there are a host of little things that that pop up, unexpected, to interfere with daily functioning.  In the next few weeks, I plan to outline a few of these…starting with visual processing.

What do I mean by visual processing? As defined by LDOnline.org:

“Visual and auditory processing are the processes of recognizing and interpreting information taken in through the senses of sight and sound. The terms, “visual and auditory processing” and “visual and auditory perception”, are often used interchangeably. Although there are many types of perception, the two most common areas of difficulty involved with a learning disability are visual and auditory perception.”

Contrary to what the average layperson may expect, the brain plays a large part in determining what we see and how we see it.  Seeing isn’t only done with the eyes, and hearing isn’t only done with the ears.  These organs are the receptors of visual and auditory stimulation – but it takes the brain to make sense of them, and regulate what to attend to.  Deficits in the areas of the brain that do this can cause a myriad of problems in daily life.

Most people on the autism spectrum are affected in some way with sensory issues – but no individual experiences it in exactly the same way.  I have read accounts of people who have been much more deeply affected by sensory integration issues than I have, but it does cause a certain amount of havoc in my life. 

click the link to read more

“In yesterday’s post, I referenced a video made by a young woman with Asperger’s. In it, she says: “It took a team of 2 psychologists and a doctor, and a couple of months of testing” to obtain a diagnosis. In today’s world, this is not all that unusual - but now, news out of the UK says that there may be a better, faster way. Via a 15 minute brain scan.

Given the painful process it takes to get a diagnosis, this certainly seems like good news. Especially to some adults on the spectrum, who of have an especially difficult in getting the diagnosis and support they need. Why?

The problem is, the common focus today is on children. Early intervention, and all that. Which is fine, but if you are an adult who has spent the majority of your life undiagnosed, this can be problematic.

Surviving in the world often requires masking the symptoms of AS, or avoiding the situations which trigger symptoms. As I wrote yesterday, there are adults on the spectrum learn to do this very well. Especially women.

In an April 2009 article, Dr. Judith Gould of the UK’s National Autistic Society was quoted as saying: “We’re failing girls at the moment. We are doing many thousands of them a great disservice. They are either not being picked up in the first place, but if they ask for help they are being turned away. Even if they are referred for diagnosis, they are commonly rejected.”

This is quite true of adult females, as well.

In September 2009, Craig Evans of The Autism Hangout interviewed Dr. Tony Attwood  about girls on the autism spectrum. In the interview, Mr. Evans asked: “…globally, the statistics are that for every four boys that are born with autism, there is one girl. Now, is this observation still accurate?”

Dr. Attwood responded, “No, I don’t think it is. When it comes to Asperger Syndrome, we find that the girls are very good at camouflaging their social confusion, hiding in a group, and making sure they don’t get noticed. If you look very carefully, then I think the ratio is actually probably about two to one.”

Get a group of women with Asperger’s together, online or off, you will find that stories of missed diagnoses are a common thread. In “Perspectives of Autism from My Family,” Lori Berkowitz, Board member of the Autism Women’s Network  wrote:

“I have been different from other people for as long as I can remember. Over the years, I have had many different diagnoses, opinions, and treatments that were not quite right. My parents have tried to get me help since I was a little kid, but no one really knew what to do with me.

I was a smart but strange kid. I didn’t understand things, especially people. I didn’t fit in. I thought school was dumb. I thought a lot of things were dumb. Turns out a lot of them are, but many were not as black and white as I thought at the time. It wasn’t until I was an adult that I began seeing shades of grey.

During my early years of school, I barely talked at all and spent a bunch of time in the principal’s office. My teachers and school psychologists thought I could be normal if I tried harder. If I would just be like the other kids, they would like me and wouldn’t be so mean to me. I just wasn’t ‘applying myself’.

It wasn’t until 5 years ago that I finally learned what is ‘wrong’ with me. I have Asperger’s Syndrome. Autism. I sometimes wonder what would life have been like if we knew that when I was 3 instead of when I was 38? It is hard not to think of all the ‘if’s.”

I do not believe that Lori’s experience is unusual - in fact, I have heard similar stories time and time again. I, too, find myself spending a great deal of time thinking about all of the “if”s. Based on this, and my experiences, I am utterly convinced that current diagnostic processes are failing many, especially girls and women. It’s not as if bias has not appeared in autism diagnosis before.

Given all of this, the idea of a non-subjective test for autism spectrum disorders seems like a godsend. But is it?

I’m hesitant to jump on the bandwagon just yet.

First of all, the sample size. The study involved only 20 autistic adults. All of whom happen to be male. All of whom have average, to above average IQ. How, in any way can this be representative of the entire spectrum?

Is truly enough known about variability of autistic brain structure within the sexes to ensure that female differences are captured (if there are any)? If this is not addressed, we may find ourselves repeating the very same errors that have made obtaining a diagnosis for females so difficult, but perhaps even worse.

In an analysis written of the study for the UK’s Guardian newspaper, Carl Heneghan, Director of the Centre for Evidence Based Medicine, University of Oxford, describes a good share of concerns about the study. He says, “To obtain a useful result, a diagnostic study needs to include a broad spectrum of the diseased*, from mild to severe. A study also needs to have independent, blind comparison of test results (in this case the brain scan) with a reference standard (the current tests for autism) among a consecutive series of patients suspected (but not known) to have the target disorder and replication of studies in other settings.”

Further, despite the vaunted reports of 90% accuracy, the practical results do not even begin to approach that. On his blog, Heneghan writes:
“What has happened is the sensitivity has been taken for the positive predictive value, which is what you want to know: if I have a positive test do I have the disease?

Sensitivity: The proportion of people with disease who have a positive test. Positive predictive value (+PV): The proportion of people with a positive test who have disease.

So, for a prevalence of 1% the actual positive predictive value is 4.5%. That is about 5 in every 100 with a positive test would have autism. Even at a prevalence of 2%, only 8.5% would be correctly identified”. (For further on this, reference fellow PT blogger Jonathan Levy’s post on the subject)

Even lead researcher on the study, Dr. Christine Ecker, indicates that this technique is not yet ready for prime time. In an e-mail communication to the Guardian she states: “It is currently unknown how these values [which were measured] generalise to the entire population, and across all dimensions of the autistic spectrum, which is why we have clearly stated that we are not yet ready to make our approach available in the NHS just yet.”

continue reading on the next pages by clicking the link.

aspienaut:

I have been wanting to write about empathy for some time, it is perhaps the most difficult aspects of being on the Spectrum and one of the hardest to fully understand and therefore explain.

It has been said that empathy is what makes us human. This statement obviously creates a difficult moral…

Authenticity.  It’s a simple word — but for some of us, it isn’t so simple.  When it comes to those of us who have different methods of expression…what looks like authenticity may not be, and what looks like inauthenticity may actually be the opposite.

Recently, my friends over at The Thinking Person’s Guide to Autism published an essay by Bev Harp, who blogs at Asperger Square 8 on language and authenticity entitled “Scripted Language and Authenticity.”  Bev’s work has always resonated with me, and this was no exception.  (Regular readers may remember that I featured an educational video by Bev in my post “Perspectives: Asperger’s and Empathy”)

In her post, Bev talks about how, for her, language abilities can change from day to day and how that fluctuation in abilities is often judged by others as dishonesty. Like me, and many others on the spectrum, one of the ways Bev copes with these challenges is using scripted language. Unfortunately, that too is often misconstrued.

She describes: ”One of the common forms goes like this:

First someone asks a question and I can’t think how to answer it. Either several possible (equally valid) answers compete to be said and confound my ability to choose, or I can’t, at the moment, figure out what the question means. I’ve tried saying ‘I don’t know what that means,’ or ‘I don’t know how to answer you,’ but this tends to anger many people and even (perhaps especially) therapists and other ‘helpful’ types have accused me of lying in these cases. Other times, I may be unable to formulate even that much of a response.

Sometimes, though, the answer comes as easily as I imagine most answers do to most people, that is, almost automatically. Only the answer isn’t ‘from’ me. It’s one of my scripts, which may or may not make sense to the other person involved.”

I identify with this more than I can tell.  Like Bev, much of my social repertoire involves a list of scripts, which may or may not go well.  Some make sense, others less so.   Bev describes responding to the question “How was work today?”:

“Of course, things go more easily when the answer is ‘fine’ rather than ‘asafetida.’ No one thinks I am being a smartass, though they might wish for more information. Yet, I haven’t answered any more authentically. The response is ‘cut and paste’ whether or not the listener thinks I have made a legitimate effort to converse.”

And this is where the point of this post comes into play — as a person who communicates differently, how do you find authenticity in a world that requires that you communicate in a language not your own?   How authentic can you be, when you are pretending to be something you are not? 

I recently had a conversation with a co-worker about my disabilities — a partial disclosure.  I talked about how hard it is to have to cover up what you are. She responded, “No one should have to.”  I said I agreed, in theory…but the world isn’t so tolerant.  How well would someone be received in a workplace like ours, I asked, if they didn’t acknowledge other people or say “Hi”?  If they just didn’t “do” the niceties, or were blunt to the point of appearing rude? 

She sat back in her seat, thought a minute, and acknowledged that yes, people wouldn’t be understanding of that. She seemed to take my meaning.  As easy as it is to say that everyone should “just be themselves” — the world doesn’t really make it possible for autistic people to do so.  In fact, there’s a whole industry built around ensuring that autistic children become “indistinguishable from their peers.”

So where does one balance the expectations of the world with the need for an authentic self?  And, to what extend does the current climate around autism encourage that level of authenticity in children?  In my last post, I wrote about listening to old tapes of myself as a young child.  The insights from this were so numerous, it was hard to choose which ones to write about.  I had to make some difficult calls as to what to include and what not…in the end I still wound up with a very long post.

lynnesoraya:

• Daniel Tammet - The Boy With The Incredible Brain
  Daniel Tammet is a high-functioning autistic with savant syndrome. He can perform amazing feats of memory, mathematics and linguistics. But can…

In recent months, the New York Times has gotten a lot of positive press in the autism community for Amy Harmon’s series of sensitive articles regarding the many issues that impact those with autism and their families, including transitioning to adulthood, the DSM 5 revisions, and romantic relationships. But two recently published pieces are causing a great deal of anger in the very same community. The thrust of these two op-eds: Asperger’s is over-diagnosed.

“Asperger’s History of Over-Diagnosis,” by psychiatrist Paul Steinberg, provides a clinical view, while the narrative “I Had Asperger Syndrome. Briefly.” by Benjamin Nugent, provides a first person account of being diagnosed with Asperger’s in the 90’s.

In his piece, Dr. Steinberg equates “true” autism to “a Peter Pan syndrome” and alleges that those with true autism “never move beyond adolescence.” Asperger’s, he explains, isn’t true autism. He writes, “Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities.”

He states that adults currently diagnosed with Asperger’s, like Tim Page, author of the memoir “Parallel Play” “…are able to compensate more completely than a truly autistic child or adult whose language deficiencies and cognitive deficits can often put him at a level of functioning in the mentally retarded range.”

Mr. Nugent, in counterpoint, presents his story of being misdiagnosed. “Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. The manual, still the authoritative text for American therapists, hospitals and insurers, listed the symptoms exhibited by people with Asperger disorder, and, when I was 17, I was judged to fit the bill.”

However, he goes on to explain, “…after college I moved to New York City and became a writer and met some people who shared my obsessions, and I ditched the Forsterian narrator thing, and then I wasn’t that awkward or isolated anymore. According to the diagnostic manual, Asperger syndrome is ‘a continuous and lifelong disorder,’ but my symptoms had vanished.”

Stating that he doubts his experience is unique, Mr. Nugent writes that, “Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.” Therefore, in his opinion, the diagnostic criteria should be narrowed.

Many people with Asperger’s and their family members disagree, noting the sweeping generalizations and mischaracterizations in the articles. First of all, was one of the subjects cited by Dr. Steinberg, Tim Page. About Mr. Page, the good doctor wrote:
“In his 2009 book ‘Parallel Play,’ Tim Page, a former music critic for The Washington Post, describes his relief in being given an Asperger syndrome diagnosis as an adult and thus having an explanation for his longstanding social difficulties. But the rubric of a ‘social disability’ would be more accurate than ‘autism spectrum’ for people like Mr. Page, and potentially just as relieving.” He then goes on to imply that Mr. Page’s “social disability” was ameliorated largely by reading “Emily Post.”

Not surprisingly, Mr. Page took exception to this, writing:
“Paul Steinberg (‘Asperger’s History of Over-Diagnosis,’ Op-Ed, The New York Times on the Web, Feb. 1) simplifies my own experience with the condition, as described in my memoir, ‘Parallel Play.’

‘Social disability’ does not begin to sum up my lifelong history of insomnia, anxiety, depression, cluelessness and isolation, little of which was assuaged by Emily Post. Nor, in all modesty, does it address the singleminded, fiercely exclusive energy I can bring to a project that has captured my attention, the immersion in an otherworldly ecstasy that music, writing and film provide, and the very occasional but no less profound joy in my own strangeness.”

click here to continue reading.

WOW, i feel so insulted. i know i have asperger’s.

The Perfect Answer

Why do you stay in the marriage?

An acquaintance recently asked my husband this question. He asked it not because my husband had expressed any unhappiness with our marriage, but because I have Asperger’s.

How do I begin to explain all the ways in which this question hurts?

Let’s start with the assumption that my husband must be unhappy in our marriage, despite the fact that we are both quite delighted to be married to each other. It’s rather common for disabled people to hear others make that assumption. It’s an assumption based on the notion that disabled people are a trial and a tribulation to those who love us. So I knew, at that moment, that I wasn’t alone. It was somewhat comforting to know I wasn’t alone, but mostly, it was very painful to know that I wasn’t alone, and that so many of us still go through these experiences.

And then, there is a stereotype at work here, an assumption that people with Asperger’s are all alike, and that we make relationships difficult simply by virtue of being autistic. Somehow, when one partner has Asperger’s, generalizations replace specifics, and the idea that relationships are a two-way street, in which each party can be a challenge to the other, gets lost.

While I was still reeling from having heard the question, only one answer came to mind, and it was the answer I was hoping my husband had given:

Because I love her.

//read more here//