No Stereotypes Here

Archive for the ‘AWN’ Category

While I’m pretty sure it can be annoying in some situations, preservating and being stubborn or determined can have some benefits.  One being keeping at competing in contests for a long time, such as how the Autism Women’s Network has kept in the Pepsi Refresh contest for so long

Yes, I blogged about this some time ago; however, AWN did not make the top ten then, but since then has kept in the top 100 and kept in the running.

This month, AWN started at rank #5, and has slipped to #12.  With the combined help and voting of the community, we can get back up into the top ten and finally be able to run the workshops and programs that this funding hinges on.

As a reminder of what AWN is planning to do with the money, here’s the project profile on the Pepsi site.

The Autism Women’s Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.

AWN’s Project FAIM (Female Autistic Insight Mentoring) workshops will be the 1st of its kind.

We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications.

Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.)

The participants will meet renowned autistic females whereby gaining valuable insight.

We will secure the Autism Women’s Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.

Please help us to continue to support Autistic females who may not have access to supports and accommodations otherwise.  The workshops may be a small step towards a greater change and difference in many women’s lives.

Thank you very much.

(Please pardon the decreased quality of my writing in this post; I am having some communication difficulties today)

(Disclosure: Corina Becker is the Director of Networking for the Autism Women’s Network.  However, all opinions and views expressed on this site are solely the property of Corina Becker and does not reflect the official view of AWN and other organizations unless specifically stated. )

from the email sent out by AWN
I was notified only moments ago that approximately 150 contestants in the Pepsi Refresh Contest have banned together & decided to make a last minute run for a spot as a finalist in the Top 100 so they can be carried over to next month’s Pepsi Grant Contest. This means that 150 people have formed an alliance to get into the Top 100 and boot Autism Women’s Network along with other Top 100 contestants OUT!!!

Please VOTE now if you haven’t cast your daily vote today!! This contest is not over until midnight!!

I am asking that all of our supporters tweet, facebook and network everywhere throughout the afternoon & tonight – requesting our friends, and followers to cast their final August VOTE for us now. If not, AWN can very easily find ourselves out of the TOP 100 by midnight. We already dropped to #67 in the past 30 minutes!

http://www.refresheverything.com/awn

(disclaimer: Corina is Director of Networking for the Autism Women’s Network)

It sometimes takes small steps in order to make a larger difference in the world. Small events, such as a stone falling into water, can create larger reactions that ripple outward to have a larger effect, either in the community, or even the entire world. Thus, we are never able to completely disregard even the smallest action.

In this case, I think that this is a recognizable starting point for a greater change. What am I talking about? Well, Pepsi Co is engaged in a wide-scale promotional campaign called Pepsi Refresh Project, that is this humongous contest to do two things: one, to brainstorm ideas to aid the Gulf Coast oil spill, and two, to provide various grants to the top ten voted individual, businesses and non-profit organizations, per category.

Among the contenders this month, the Autism Women’s Network takes its first greater steps towards making a larger impact and being recognized as a non-profit organization. As part of its mission to provide support to previously under served autistic females, AWN is competing with 1234 other competitors for a $50,000 grant. With the grant, the AWN plans to run Project FAIM (Female Autistic Insight Mentoring) workshops, pay for legal fees to gain non-profit status, and pay for maintenance costs for the website and online supports.

Most of the grant will be to run Project FAIM, which includes costs for materials, transportation, and rent space. The workshops will be held in five locations across the US, and will focus on qualities that appear to be specific to autistic females. They will cover topics such as peer supports, relationships, vulnerabilities and successful communications, and will include active supports and information for autistics, parents and educators. At each location, renown autistic women will be on hand to provide insight and mentoring, making sure that each person will gain supports available.

This is one step towards a bigger change in how autistic females are supported and served in our communities and society. Recognized now as one of the most under supported population in the autism community, there needs to be a change in how we think about autism, especially in how it autism is understood and recognized. As part of its long-term goals, the Autism Women’s Network seeks to make these changes, and so, in my opinion, this is a worthwhile cause to support.

So if you please, vote with me daily to get the AWN in the top ten of its category.

(Disclosure: Corina Becker serves on the board of the Autism Women’s Network)

This was written by myself and Amy Caraballo for the Autism Women’s Network. It is available on the AWN site here .

The Proposed DSM-V Changes: Is it a Step in the Right Direction?

Lately, the online communities have been talking about the recently released proposed revisions for the the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V). The proposed revisions embody quite a few differences in the diagnostic criteria for disorders previously under the umbrella of Pervasive Development Disorder (PDD). Available online for comment, the two main concerns appear to be vague wording of the diagnostic criteria and whether or not Asperger Syndrome should remain as a separate diagnosis.

Diagnostic Criteria
Under the DSM-IV, each subcategory of the PDD spectrum was fairly specific in listing criteria for the diagnoses. However, despite that, many children who did not fit the subcategories of Autistic Disorder, Asperger’s Disorder or Childhood Disintegrative Disorder were given the diagnosis of Pervasive Development Disorder – not otherwise specified (PDD-NOS). PDD-NOS has included many presentations of the disorder. Over time, the number of children receiving PDD-NOS has been increasing. It is not surprising that the DSM committee felt that something was amiss. “Not otherwise specified” is far from informative.

The proposed changes to the DSM-V include merging Autistic Disorder, Asperger Syndrome, Pervasive Development Disorder – not otherwise specified (PDD-NOS) and Childhood Disintegrative Disorder into the classification Autism Spectrum Disorder. Rett’s Disorder has been removed from the DSM and labeled a “medical disorder”. While there are various opinions on the matter, many are extremely concerned over the vague diagnostic criteria in the proposed manual.

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:


a. Marked deficits in nonverbal and verbal communication used
for social interaction:


b. Lack of social reciprocity;


c. Failure to develop and maintain peer relationships appropriate to developmental level.

Much of the concern is over criteria one (see above), as many of the deficits cannot be measured in a clinical setting. As most clinicians would be unable to observe children in their natural environments, much of the information used to determine diagnosis would consist of speculation and interpretation by unqualified persons such as teachers and others who work with the child. This makes the diagnosis subjective and dependent on the knowledge of individual observers.

Section 1.a assumes that the average pediatrician has adequate speech and language training in order to determine deficits in a verbal child. While the non verbal children may be easy to identify under criteria a, those without obvious speech deficits may fall through the cracks without proper evaluations by speech and language pathologists.

Other concerns relate to the age in which some of the criteria is appropriate. For instance, section 1.b requires a lack of social reciprocity. Reciprocal social behavior refers to the extent to which a child engages in emotionally appropriate turn-taking social interaction with others. It is normal for very young children to engage in parallel play and thus typical children do not always engage in reciprocal play. Section 1.c indicates that the child must show deficits in peer relationships – something that is not always obvious in early childhood.

The manifestation of these difficulties may not be cut and dry. Often, like-minded children flock together. With the rate of Autism diagnoses rising some Autistic children may have developed peer relationships with others on the spectrum. Additionally, renowned specialist, Tony Attwood has found that girls have naturally higher verbal and social skills than boys which can often lead to missing the diagnosis under the old criteria1. Under the proposed criteria, these children would simply not qualify for diagnosis at all.

Since all three criteria are required to receive a diagnosis, it is easy to speculate that many children will not be diagnosed until well past early intervention years when or if they would show obvious deficits.

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:


a. Stereotyped motor or verbal behaviors, or unusual sensory
behaviors


b. Excessive adherence to routines and ritualized patterns of behavior


c. Restricted, fixated interests

The wording for criteria two (see above) is not only very vague, but insinuates that these behaviors are undesirable. This is directly in conflict with the current mentality of concentrating on strengths as well as weaknesses. The proposed changes return us to negative stereotypes that define autism as a series of defects. Compounded by vague wording, criteria 2 fails to define what defines “stereotype”, “unusual”, “excessive” and “fixated”. This lack of clarification allows those using the DSM-V for diagnosis, to rely on their own interpretation and definitions. As with criteria one, the diagnosis becomes subjective with what the diagnostician perceives as being usual, excessive and essentially typical behavior. Instead of clarifying, this criteria not only confounds the diagnosis, but is also contrary to defining autism as a widely diverse spectrum that has particular deficits as well as unique abilities.

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Criteria three (above) appears to confirm the fear that young spectrum children will go undiagnosed. Data has shown that early intervention is key to helping Autistic children with potential deficits. Additionally, failure to identify children at an early age could cause severe stress to children who need accommodations to function in mainstream society. It has been confirmed that the earlier accommodations and interventions are put in place, the better the outcome for the Autistic person. However, under the new DSM-V criteria, it is likely that children will go undiagnosed until they are school age and beyond. Children who previously may have been diagnosed Asperger’s Disorder and PDD-NOS could easily slip through the diagnostic cracks.

Finally, a large concern is by some in the Asperger’s adult population who were previously diagnosed under the DSM-IV. While many of these individuals continue to fit the Asperger’s Disorder under DSM-IV, there is concern that as adults, they will be “undiagnosed” under the DSM-V since they now do not present with the new criteria requirements. This presents a very real question; how will the currently diagnosed population fair through this change?

Autism vs. Asperger’s
For various reasons, some feel that Asperger’s should remain separate. Some speak of pride of being “Aspies” (a term created by the adult population), finding a sense of superiority and self-esteem in the distinction. Along with this view, there are those that feel that Asperger’s includes a difference in communication skills and ability to adapt than that of Autistic Disorder. The mindset is that these differences mean that those with Asperger’s are not the same as others on the Autism spectrum. The hard working advocates who have toiled endlessly to have Asperger’s recognized as a valid diagnosis, see this as a step backwards from what they have worked for, and perhaps, are feeling that they have struggled for nothing.

Inclusion Issues

Under the new DSM-V, there is also a concern that people currently diagnosed as Asperger’s will be automatically slotted into specialized Autistic community, and special education programs where they will be segregated from their non-disabled peers. This is a tribute to the prevailing mindset that those with the Autistic Disorder diagnosis are somehow “more disabled” than those with Asperger’s. Additionally, this mindset is testimony to the current problems inhibiting proper inclusive programs in our public schools and communities. It appears that society is still more inclined to let labels define the supports and accommodations rather than individual needs.

Currently, the only diagnostic difference between Autistic Disorder and Asperger’s has been defined by verbal skills and more specifically, a child’s ability to speak. Using this model a person diagnosed with Asperger’s is no less Autistic than a person diagnosed with Autistic Disorder. However, under the Individuals with Disabilities Educational Act (IDEA) qualifying diagnostic criteria, this distinction has often excluded Asperger’s as an Autistic Disorder. For some, this has prevented access to accommodations, support programs and services that they need to remain stable or reach their full level of independence, both in schools and in the community.

Currently, U.S. states have used Autism, Emotional Disturbance and Other Health Impairment as the qualifying diagnoses for those with Asperger’s Syndrome, but not actually Asperger’s. Additionally, IDEA has a behavioral qualification which states that a child who has “behavior that impedes his/her learning or the learning of others” also qualifies for IDEA protections. IDEA is supposed to be “needs” based and not strictly applicable to diagnostic labels. It speaks more about the state of accommodations and specially designed instruction than the actual definition of Autism.

One solution to the problem of accommodations is the changing IDEA and other educational criteria by removing static qualifying labels (such as Autism, Emotional Disturbance, etc). Because IDEA does not use the DSM, it is unclear how the proposed DSM-V changes will affect a students ability to receive special education services.

Severity Levels

One unknown is what the severity levels of Autism Spectrum Disorder will look like in the DSM-V. Previously it was thought that Asperger’s Disorder was the “highest functioning” Autism, Pervasive Developmental Disorder Not Otherwise Specified was next and finally Autism being the “lowest functioning” diagnosis. However, over time, it has become more apparent that the lines between these diagnoses are not so clear. While those with Autism may have lower IQ scores, it is not obvious how accurate these scores are, as those with the current Autistic Disorder almost always have severe verbal communication impairment.

It is thought by some that breaking down the new Autism Spectrum Disorder by severity may be a step in the wrong direction. Until there are standardized tools to accurately measure a persons ability to “function”, severity is subject to speculation and interpretation. However, as there are no proposals published currently, it is too early to say what these severity levels will look like or whether they will exist at all.

Looking toward the future
While there is much scrutiny over what the DSM-V should look like, it is questionable as to why the Autism Spectrum diagnosis is remaining in the DSM at all. While there are many theories about the origins, it has been established that Autism is not a temporary mental health issue, but a life long neurological and biological issue.

Autism has been defined as a spectrum disorder which indicates there are many varied presentations. One could speculate that Autism, itself, is not the disorder and that other commonly co-morbid medical diagnoses are responsible for any impairment.

Many Autistics also have speech and language disorders, sensory processing disorders, fine and gross motor disorders, immune system dis-regulation, and learning disorders. These disorders do not appear in the DSM, but appear in the ICD (International Classification of Diseases) manual which is medical, in nature.

Would it be more appropriate perhaps to place Autism Spectrum Disorder in the ICD manual with the commonly co-morbid diagnoses? This would ensure that every person diagnosed with an Autism Spectrum Disorder is given appropriate interventions and support customized to individual needs. Attempting to find a “one size fits all” diagnosis seems unrealistic when not every presentation is the same. Indeed, doing so would likely alleviate concerns for covering all the diagnostic criteria in the DSM-V. While many Autistics prefer not to be considered diseased, changing the diagnostic process to the ICD manual is preferable because of the many co-morbid issues.

As it stands now, will these proposed revisions to the mental health diagnostic criteria cause more Autistics to fall through the cracks, as opposed to being recognized, and given the appropriate supports as soon as possible. Does the vague criteria reinforce the standard, narrow diagnosis of Autism, instead of reaching out to acknowledge the wide spectrum of Autism?

1. The Complete Guide to Asperger’s Syndrome, Attwood

(Disclosure: Corina Becker serves on the board of the Autism Women’s Network)

As Director of Networking (a fancy way of saying Forum Moderator), I present to you the Autism Women’s Network, which has officially opened it’s website and Forum, as well as a twitter feed, Facebook group and BlogtalkRadio show (all available on the website).

Lately, we welcomed Professor Simon Baron-Cohen, Liane Holliday Willey, and Ari Ne’eman to the Advisory board, and completed shows with Temple Grandin.

The mission of the Autism Women’s Network is to provide effective supports to autistic females of all ages through a sense of community, advocacy and resources.

And some words in the “About” section, from the Executive Director, Sharon daVanport:

Greetings and welcome to the Autism Women’s Network. AWN is dedicated to building a community of autistic females, their families, friends, and supporters who have a place where they can share their experiences amongst a diverse, inclusive, and supportive environment. Our website will always be viewable by non members; however, we ask that you take a moment to complete a simple registration in order to have full access to the site which includes: actively participating in the forum, and posting comments on articles. We invite you to take a look around and join us today.

Now, we’re newly started, so not everything is completely sorted out. However, we welcome all people, autistic, non-autistic, male, female and the genderdiverse, to AWN, to support one another and provide a community dedicated to autistic women issues, as well as to just have fun.

I hope that the AWN will be a friendly place for everyone here.

(Disclosure: Corina Becker serves on the board of the Autism Women’s Network)



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  • Corina Becker: Hi Anonymous person who apparently doesn't feel like giving me a name to address, and thus hides behind anonymity!!! I never said the federal gov
  • Anonymous: I think that it is about time something is being done federally to help those with ASD to get much needed therapies for their disability and YES I do
  • Corina Becker: Hi Janine! Melody reads here? Awesome. I honestly had no idea she was aware of this blog.And thank you so much, I'm glad both of you like the bl

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