All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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17 April 2009

DSM V: Lobbying for a Major DSM IV Overhaul

It's no secret that the Diagnostic and Statistical Manual of Mental Disorders IV (DSM IV) criteria for Autism Spectrum Disorders is in need of significant revisions and updating.

I am currently in the process of organizing and gathering information from the Autistic community to include in our proposed changes to the DSM V.
A colleague of mine will soon be submitting a formal paper, fully inclusive of views from the Autistic community, to the committees in charge of creating the DSM V.

Personally, I am especially passionate about seeing a significant addition to the DSM V regarding the uniqueness of autistic females, as autism may present very differently in females than in males.

So far, our changes and additions include:

  • Attention toward the unique differences in how autism presents in males and females, as well as to realize that young autistic females may very well be interested in princesses, fairies, dolls, fantasy, fashion, ballet, etcetera. It is especially important to note that autistic female interests may not at all mirror common autistic male interests.

  • Spotlighting uneven skills in autistic people.

  • Clarifying special interests, as they may realistically range from athletic to artistic to intellectual pursuits.

  • Noting that individuals on the autistic spectrum do not lack empathy or emotions.

  • Correcting previous data regarding autistic people and their supposed lack of imagination.

  • Noting that autism is not a mental disorder, but rather a neurologically-based developmental disability.

  • Defining hyper and hypo sensitivity and/or difficulty with sensory integration.

  • Adding the fact that many autistic individuals may have motor, as well as executive functioning strengths and challenges.

The DSM V is expected to debut in 2012 (late spring).

Related Links:

Autism and Empathy

Blasting Stereotypes in Autistic Females

Doctor's are 'failing to spot Asperger's in girls'

DSM-V Neurodevelopmental Disorders Work Group

Myths of Autism

Skills Here. Skills There. Skills Spiraling Everywhere.

The Truth About Autistic Females

01 April 2009

World Autism Interviews: Denise Junk/Minneapolis, Minnesota

I want one!

Interview with Denise Junk

Denise lives in Minneapolis, Minnesota. She has a bachelor's degree in Psychology and Women's Studies. She is also a Certified Nurse Assistant. Currently, Denise works overnight shifts at the home of four women who are disabled. Denise's interests include online research, needle felting with wool, and selling things she makes via her online store on Etsy called Stars Apon Thars. Her blog: Eyes Of Time

E: Tell me about your life in Minnesota.

Denise: I work overnights with four women who have special needs, both physical and cognitive. My work schedule is Wed-Wed from 10 p.m. to 8 a.m. (except on my first Wednesday when I have to be there at 4:30 pm....that is a very long night).

I have been working with people with "special needs" for over four years. I really like the house I work at now, but know that I would not be able to work a day shift in this field due to the stresses of social interaction. As my schedule is now, I spend a few hours cleaning the house and do laundry throughout the night (4-6 loads most nights). Sometimes, one of the women will request medication or assistance with other personal needs and generally return to sleep. I spend the rest of the night doing my needle felting, though before my felting interest, I would spent the night reading a book or looking at Wrong Planet. In the mornings I assist the women in getting ready to leave for their day programs.

When I am not working, I tend to get caught up on sleep and search for things of interest on-line. My only social contact--other then my boyfriend of seven years--is my job and the Internet. Before the Internet, I had very little hope of communicating with others or finding people "like me," so getting a computer a few years ago, really opened up my world.

E: When did you receive a diagnosis of Asperger's?
Denise: I was forty-two years old when I was first Dxed with Aspergers and I am forty-five years old now, so it is still pretty new to me.

I did spend several years after my diagnosis researching and being obsessed with learning about autism. I would have considered it a special interest a year ago, but now it is just an interest. Learning about autism has given me a lot of insight, as well as a new perspective on why I do and feel things a certain way. Learning about executive dysfunction, Auditory Processing Disorder, Dyslexia, Dysgraphia, have also given me some insight into why I have had difficulties over the years.

Learning about autism has also given me some psychological perspective on why I had the difficulties with my parents when I was younger when no one knew what was "wrong" with me. My parents are Christian Scientists. Back when I was younger, and even now, they refuse to accept that there is actually anything wrong with me other then perpetual selfishness, laziness, and making bad choices.
E: What resources does Minnesota offer to autistic individuals?

Denise: If Minnesota has services for Aspie adults, I am unaware of them and probably too "shy" to utilize them anyway. Plus, not being able to drive there or talk to strangers seems to be a bit of an obstacle for accessing resources for me.

I'm on-line friends with several Aspies but I am not very social. I learned a lot from my interactions on Wrong Planet and met some cool folks there.

E: Please share communication tips that work for you.
Denise: The best way to communicate with people on the spectrum would be first realizing that we are individuals with different communication styles--just like the rest of those "normal folks."

My personal preference is to not be "communicated with" other than on-line, but if it has to happen, then I would advise people to not project their own delusions, or psychosis, upon my every gesture and vocal intonation. I neither speak nor read "monkey talk," but rely on actual words and actions to convey and understand meaning. If people don't understand me, then ask questions. I think the best advice for AS/NT interactions is something my grandpa would have said, which is "Say what you mean and mean what you say."
E: How do you feel about the rampant misunderstanding, and under or misdiagnosis, of women who are on the autistic spectrum?
Denise: As far as I can tell, the main reason that women are under-diagnosed is because diagnosis is currently under the purview of a psychological system that masquerades as a science, but is completely saturated in social biases and assumptions.

If we ever move it to a neurological, genetic, or chemical science then there might be some progress. It's not that psychologists are bad people, but many cannot seem to distance themselves from a lifetime of gender assumptions and indoctrination. When they see an Aspie female, they look for signs of the most common female diagnoses such as depression, anxiety, or Bipolar disorder.

The funny thing about "reality" is that it can be influenced by what you are looking for, which psychologists should realize, considering that it is a basic premise in cognitive therapy.
I also think that hormones are kind of important in understanding how one individual with an autistic brain may function. Hormones control many mind-body functions. So why aren't hormones considered to be a factor? Hormones matter. Making assumptions about an entire population of people with a particular neurology without considering how hormones may interact with it makes no sense.

Also, there are also many social expectations that are different for each gender and this will also change how Aspie traits "present" in each gender.
I am not saying that there are or are not more male Aspies but I'm not believing any statistics until I see a bit more objectivity in how they decide who is on the autism spectrum, which is not likely to occur until we find a more objective test.
As far as gender myths, I was a tomboy who actually thought I was male until I realized that being male meant more than someone who climbs trees and collects rocks and bugs. If I cared about how I dressed, it was only because I had been taught that that was the only way to attract a boyfriend, which was my main obsession from 12-26. Despite that, I could never waste my time reading a Cosmo if there was a real book around instead.

The only video game around when I was growing up was Pong and I was certainly not obsessed...but I did spend a lot of time beating Resident Evil in a certain amount of time so I could win the rocket launcher.
I have no idea what the average Aspie female is like and wouldn't believe what I read anyway and here's why: There are currently 8 traits in the Asperger's diagnosis and none of them say a word about gender. They are based on the premise that Aspergers is a light form of autism. Specific traits of "Low-Functioning" autistics have been taken and applied to more abstract life functions of people with average and above intellect. I'm just not sure I buy the whole premise.

Although I do think all autistics share a common neurology, I think there are other factors that may effect how these traits are exhibited, as well as more plasticity to the "why" of it than what is currently believed. My own functioning level is all over the place--and my brain wiring could never make changes that fast--so something besides pure neurology must be involved.

Any scientific statistics that are currently being used to say what Aspie females are, or are not, cannot help but be wrong because so many Aspie females have been excluded from being diagnosed.
E: What would you like to others to know about autism?
Denise: I just want to mention that I think that Aspies are currently an untapped resource and that a lot of potential creativity and brain power is currently being wasted by society's inability to tap this resource. Computers have helped many of us, both as an employment option, and as a way to communicate with each other, but more can and should be done. I think as the world faces economic, environmental, and energy crises, people who have the ability to think outside the box will become too valuable to just throw away because they don't, or won't, look you in the eye or smile at the "right" times.
As you have mentioned, not all of us are math and computer wizards--and I believe this goes back to how autism is being defined by a few powerful people with their own agendas. So far, the emphasis has been on autistics with male brains (less empathetic), mathematics, and engineering. Well, there is another kind of Aspie...ones who share many of the same traits but are painfully empathic and more artistic and sensory in inclination.
In the meantime, it would be nice if there were more resources for adults on the spectrum, who have driving and social phobias, to help them to become independent and productive members of society . Most of us are not interested in "free money." Just a chance to live independently and to be able to use the gifts that we were given along with a little help in figuring out what those gifts are and how to use them.

E: What something about Minnesota you would like for others to know?

Denise: Minnesota, the home of Lake Superior, is one of the largest fresh water sources in the world and a great pace to collect agates. It's also a very sacred place. Lamb's campground on the North Shore is a great place to go camping and hiking in the early fall.

Thank you Denise for sharing yourself and your views with Aspitude! readers. Best wishes!