Joint ASAN-Autism Society Statement on DSM 5

[Guest guest]

Joint ASAN-Autism Society Statement on DSM-5

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,

Ari Ne'emanPresident ofAutistic Self Advocacy Networkaneeman@...

BadeschPresident of Autism Societysbadesch@...

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Autistic Self Advocacy Network | P.O Box 66122 | Washington | DC | 20035

[Guest guest]

I got this in my email last night. Good to see that ASAN and ASA want to stand

together on this. I was on Wrong Planet last night, and this very topic was

being discussed. While I can understand that ASAN, ASA, and GRASP have their

differences, I am glad that all three organizations can come together in a time

as this.

/Greater Chattanooga Aspies

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> Joint ASAN-Autism Society Statement on DSM-5

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> Dear Friend,

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> 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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> Ari Ne'eman

> President of

> Autistic Self Advocacy Network

> aneeman@...

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> Badesch

> President of

> Autism Society

> sbadesch@...

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> Forward this email

>

>

> This email was sent to opu@... by aneeman@... |

> Update Profile/Email Address | Instant removal with

SafeUnsubscribeT | Privacy Policy.

>

> Autistic Self Advocacy Network | P.O Box 66122 | Washington | DC | 20035

>