RE: Approval Requested: ASD defintion

Hi Abi,

Rachael or Lisa should be able to answer your question,
“Does the AG or WAI documented the approach they have adopted?”

I shall abide by the group’s decision between person-first and identity-first.

I loved learning from the information you shared.

Thank you.

John

John Rochford
University of Massachusetts Medical School
Eunice Kennedy Shriver Center
Director, INDEX Program
Faculty, Family Medicine & Community Health
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From: James A. <A.James@soton.ac.uk>
Sent: Sunday, June 28, 2020 12:18 PM
To: Rochford, John <john.rochford@umassmed.edu>; Rachael Bradley Montgomery <rachael@accessiblecommunity.org>; public-cognitive-a11y-tf <public-cognitive-a11y-tf@w3.org>
Subject: RE: Approval Requested: ASD defintion

Hi John

Thank you for your suggestion, I have added it to the Google doc<https://nam01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdocs.google.com%2Fdocument%2Fd%2F1AuM-06Alk5VgVgFPTsJD2DcadIrcGIRVDcNgFwPiQRc%2Fedit%3Fusp%3Dsharing&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843503150&sdata=83NhWoj6gA9lVQluZOAsHLUGrBJlf9Eb7A0TPFrQbEw%3D&reserved=0> so that the group can discuss it.

Regarding identity vs person first, in the UK we tend to use identify first for all disabilities (e.g. http://www.disabilitywales.org/socialmodel/inclusive-language-and-imagery/<https://nam01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.disabilitywales.org%2Fsocialmodel%2Finclusive-language-and-imagery%2F&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843513145&sdata=FM2T9D8%2BIWckWwUt7gjMy%2BdoXmS2nqf3rbYXx3F%2FFlw%3D&reserved=0>) but this is not the case in Australia and most of Europe which still recommend person first language. As we are following US conventions in this glossary. Many of the US sources I have checked (including government sites) reference the Disability Language Style Guide<https://nam01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fncdj.org%2Fstyle-guide%2F&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843523140&sdata=%2BkLoWcBaiIvSmE9BcvB1bmwHHbyGvlbACnIkpN7SYAc%3D&reserved=0> from the National Center on Disability and Journalism which says “If it is pertinent, it is best to use language that refers to the person first and the disability second.”

Note, while the UK we use an identify first approach we actively avoid using the disability as a noun (e.g. the autistics, the dyslexics etc) as that is seen as not inclusive. But even in the dyslexic community this is debated as it is shorter to read/write so some dyslexic individuals prefer it! There also seems to be lots of debate within the Autism community about the preferred language e.g. https://autisticadvocacy.org/about-asan/identity-first-language/<https://nam01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fautisticadvocacy.org%2Fabout-asan%2Fidentity-first-language%2F&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843523140&sdata=4ogaKlhYcu5y8qJXPyR%2FcRNuI0s2Vmb45%2FhDqNNGKsE%3D&reserved=0> which has links to many articles with different opinions. In 2015 the UK National Autistic Society and universities undertook research into language used to described autism<https://nam01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.autism.org.uk%2Fdescribingautism%27&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843533135&sdata=DsdNrzPT2jCUMQXqU%2FLNp%2BiDx87GfMAl6i7IXf3EF%2Bg%3D&reserved=0>. They surveyed 3470 people including autistic adults, parents and professionals and found:

“there is no single term that everyone prefers… all groups like the terms 'on the autism spectrum' and 'Asperger syndrome'. Autistic adults like the identity-first terms 'autistic' and 'Aspie', whereas families didn't like 'Aspie'. Professionals also like the term 'autism spectrum disorder (ASD)'.”

If we were to support an identify first approach we would need to consider if we also reflect this through the Content usable documentation and this associated glossary as consistency is important? Maybe we should include a note in the glossary explaining our rational for the language we use. Does the AG or WAI documented the approach they have adopted?

Best wishes

Abi




From: Rochford, John <john.rochford@umassmed.edu<mailto:john.rochford@umassmed.edu>>
Sent: 26 June 2020 20:03
To: Rachael Bradley Montgomery <rachael@accessiblecommunity.org<mailto:rachael@accessiblecommunity.org>>; public-cognitive-a11y-tf <public-cognitive-a11y-tf@w3.org<mailto:public-cognitive-a11y-tf@w3.org>>
Subject: RE: Approval Requested: ASD defintion

Hi Rachael,

Respectfully to you and to all who worked on this definition, a big -1 for me.

The implied definition is person-first, such as “a person with Autism”. That’s the old way of thinking. The new, spearheaded by Autistics, is identity first, such as “Autistic Person” or “Autistics”. This distinction is important because the former attributes deficit to the person, and the latter attributes deficit to the environment. For more info, see “The Significance of Semantics: Person-First Language: Why It Matters<https://nam01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.autistichoya.com%2F2011%2F08%2Fsignificance-of-semantics-person-first.html&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843533135&sdata=0x7LczO4xK5hb5okdVLxqhE50ZUOIwcTQKN0bLPhj%2Bs%3D&reserved=0>” by Lydia Brown<https://nam01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.linkedin.com%2Fin%2Flydiaxzbrown%2F&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843543131&sdata=%2FDoKs4i3XN50AZjx3d%2F0fHCInKpS4YR%2BrDkStJGUjfo%3D&reserved=0>, a lawyer and activist known as “Autistic Hoya”. Conversations I had with Lydia convinced me identity-first is the way to go.

I thus suggest the following revision.
“Autism spectrum disorder (ASD) is characterized by environmental deficits, such as from the noise of overhead florescent lighting, that cause Autistics to experience episodes of sensory overload and some degree of impaired social behavior, communication, and language abilities. This may impact Autistics’ capability to regulate behavior and attention, and may require them to rely on alternative communication methods.”

Note my substitution of “ability” with “capability” which refers to a higher level of ability that could be demonstrated under the right conditions. Also note my elimination of “… a narrow range of interests and activities …”. I don’t think that is relevant to the definition.

John

John Rochford
University of Massachusetts Medical School
Eunice Kennedy Shriver Center
Director, INDEX Program
Faculty, Family Medicine & Community Health
www.DisabilityInfo.org<https://nam01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.disabilityinfo.org%2F&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843553132&sdata=xQ1KR6nUnhEtHm%2Bd%2FHJtgYs%2BU2FfvfIuoVfzdDIbfTo%3D&reserved=0>
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Schedule a meeting with me.<https://nam01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fbit.ly%2FCallJR&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843573118&sdata=CXDRp8kIG54sQBaWOlJUZBspBGm%2B%2Bj0jK%2BMcDNjEWbc%3D&reserved=0>

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From: Rachael Bradley Montgomery <rachael@accessiblecommunity.org<mailto:rachael@accessiblecommunity.org>>
Sent: Thursday, June 25, 2020 11:27 PM
To: public-cognitive-a11y-tf <public-cognitive-a11y-tf@w3.org<mailto:public-cognitive-a11y-tf@w3.org>>
Subject: Approval Requested: ASD defintion

Hello,

In today's meeting <https://nam01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.w3.org%2F2020%2F06%2F25-coga-minutes.html&data=02%7C01%7Cjohn.rochford%40umassmed.edu%7C27bab04c04af485eefc408d81b7ed4a2%7Cee9155fe2da34378a6c44405faf57b2e%7C0%7C0%7C637289578843583115&sdata=%2B%2FTHwVwUo%2FH0ZOzuFS2sqWmYutrW%2BbgdnZlKDo2%2BfNE%3D&reserved=0> we discussed the following definition for Autism Spectrum Disorder (ASD):

Autism spectrum disorder (ASD) is characterized by some degree of impaired social behavior, communication and language abilities. This may also impact the person’s ability to regulate behavior and attention. Individuals can have a narrow range of interests and activities and they may rely on alternative communication methods. Some individuals may also experience episodes of sensory overload.

We also discussed adding a note at the top of the glossary that states: See neurodiversity for an alternative approach to ASD, Dyslexia, and other cognitive disabilities.
We would then add an asterisk (with associated aria-label) at the end of each definition that should reference this note.

Please reply with a +1 this if you are OK with this approach or write back to the list with proposed changes.

Thank you!

Rachael
--
Rachael Montgomery, PhD
Director, Accessible Community
rachael@accessiblecommunity.org<mailto:rachael@accessiblecommunity.org>

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I will frame this night in song."
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