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I just got this letter in my email and wanted to pass it along.
Dear Friend,
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.
Sincerely,
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ReplyDeleteBEST INFORMATION ABOUT AUTISM.