Fw: Joint Statement on the DSM-5 and Autism

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Joint Statement on the DSM-5 and Autism

The Joint Statement of the Autism Society and Autistic Self Advocacy

Network on the DSM-5 and Autism

As two national organizations committed to working to empower the autism

and Autistic communities today and into the future, the Autism Society of

America and the Autistic Self Advocacy Network issue the following joint

statement regarding the definition of Autism Spectrum Disorder within the DSM-5.

The autism spectrum is broad and diverse, including individuals with a

wide range of functional needs, strengths and challenges. The DSM-5's criteria

for the new, unified autism spectrum disorder diagnosis must be able to reflect

that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved

and expanded to reflect growing scientific and societal understanding of the

condition. That expansion has resulted in improved societal understanding of the

experiences of individuals on the autism spectrum and their family members. It

has also led to the development of innovative service-provision, treatment and

support strategies whose continued existence is imperative to improving the life

experiences of individuals and families. As the DSM-5's final release approaches

and the autism and Autistic communities prepare for a unified diagnosis of ASD

encompassing the broad range of different autism experiences, it is important

for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been,

" First, do no harm. " As such, it is essential that the DSM-5's criteria are

structured in such a way as to ensure that those who have or would have

qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis.

Contrary to assertions that ASD is over diagnosed, evidence suggests that the

opposite is the case - namely, that racial and ethnic minorities, women and

girls, adults and individuals from rural and low-income communities face

challenges in accessing diagnosis, even where they clearly fit criteria under

the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria

for ASD in the DSM-5 are culturally competent and accessible to

under-represented groups. Addressing the needs of marginalized communities has

been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence

from research and practice supports the idea that enhancing access to diagnosis

can result in substantial improvements in quality of life and more competent

forms of service-provision and mental health treatment. This is particularly

true for individuals receiving diagnosis later in life, who may have managed to

discover coping strategies and other adaptive mechanisms which serve to mask

traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in

adolescence or adulthood report that receiving a diagnosis results in

improvements in the provision of existing services and mental health treatment,

a conceptual framework that helps explain past experiences, greater

self-understanding and informal support as well as an awareness of additional,

previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism

spectrum, stating that doing so takes limited resources away from those most in

need. We contend that this is a misleading argument - no publicly funded

resource is accessible to autistic adults and children solely on the basis of a

diagnosis. Furthermore, while the fact that an individual has a diagnosis of

autism spectrum disorder does not in and of itself provide access to any type of

service-provision or funding, a diagnosis can be a useful contributing factor in

assisting those who meet other functional eligibility criteria in accessing

necessary supports, reasonable accommodations and legal protections. As such, we

encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the

definition of autism spectrum disorder broadly, so as to ensure that all of

those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other

organizations and groups to join with us in forming a national coalition aimed

at working on issues related to definition of the autism spectrum within the

DSM-5. Community engagement and representation within the DSM-5 process itself

is a critical component of ensuring accurate, scientific and research-validated

diagnostic criteria. Furthermore, our community must work both before and after

the finalization of the DSM-5 to conduct effective outreach and training on how

to appropriately identify and diagnose all those on the autism spectrum,

regardless of age, background or status in other under-represented groups.

Badesch

President

Autism Society

sbadesch@...

Ari Ne'eman

President

Autistic Self Advocacy Network

aneeman@...

P.S. The Autism Society will continue to share its thoughts and feelings

about keeping the community inclusive as more information about the revisions is

known. In the meantime, we strongly encourage people to get involved in the

discussion.

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