「自閉症のケアと臨床研究の将来に関するランセット委員会」への公開書簡~Open letter to the Lancet Commission on the future of care and clinical research in autism~

「Lancet Commission on the future of care and clinical research in autism


EuCAP(European Council of Autistic People)をはじめとする

Open letter to the Lancet Commission on the future of care and clinical research in autism
14th February 2022

We wish to address the Lancet Commission on the future of care and clinical research in autism on behalf of the Global Autistic Task Force on Autism Research, a committee comprising autistic advocates, researchers and representatives of organisations by and for autistic people.

As the Commission emphasised the importance of collaborative participation, we look forward to being included as collaborators. We appear to have remained largely invisible, generalised briefly as ‘the neurodiversity movement’.

It is encouraging that the need for system change and the value of neurodiversity were recognised by the Commission. However, some omissions contradict this message. Studies mapping autistic people’s priorities regarding research were not mentioned. Participatory research was mentioned but not defined, nor was literature on its principles cited.

We find the proposal to adopt the term ‘profound autism’ highly problematic, as well as the overall emphasis on behavioural interventions, excluding more recent, promising approaches. We disagree with the recommendation to focus clinical research on randomised controlled trials for short-term interventions, including medication and behavioural trials.

To improve autistic lives, we need concepts developed by autistic scholars applied to clinical research. We need research on causes of mortality, access to health care, and improving mental health support. We need research on screening and diagnosis for all countries, and the health consequences of system factors: discrimination, mistreatment, poverty and lack of access to appropriate services. We need closer involvement of autistic people to ensure that clinical trials are truly ethical, and to curb the development of pseudo-treatments.

We call for shared, accessible platforms to continue the discourse and start building collaboration.

Signatories(country codes in parentheses)

European Council of Autistic People (EUR)
Heta Pukki (President), Martijn Dekker (Board member)

Autistic Self Advocacy Network(INTL)

Collectivo Autista Mi Cerebro Atípico (INTL)
Bárbara Herrán (CEO)

Autistic Doctors International (INTL)
Mary Doherty (ADI Founder), Sebastian Shaw (ADI Research Lead), Sue McCowan (ADI Psych Lead)

Participatory Autism Research Collective (UK)
Damian Milton (Chair)

Autismus-Forschungs-Kooperation (DE)
Silke Lipinski (for the working group)

Autistic Collaboration Trust(INTL)
Jorn Bettin (Chairperson), Quinn Dexter (Advisory Board Member)

Lees- en Adviesgroep Volwassenen met Autisme (BE)
Jo Bervoets

Autism Rights Group Highland (UK)
Kabie Brook (Chairperson), Joshua Hennessy (Assistant Chairperson)

Asociación Autistas de Colombia (CO)
Monica Vidal Gutierrez

The Autistic Realm Australia Inc.(AU)
Kylieanne Derwent (Co-Founder & Vice Chair)

estas, Adult Autistic Self-advocacy Meeting (KR)
Yoon wn-ho (Co-moderator), Jang Ji-Yong (Co-moderator), Onemoo Lee

Asociația suntAutist (RO)
Ovidiu Platon (Chair)

Suomen Autismikirjon Yhdistys (FI)
Minna Brockmann (Chairperson), Annikka Suoninen (Project Coordinator)

PAS Nederland (NL)
Tammo Michel (chairperson / secretary)

Otoemojite (neurodiversity self-help group)(JP)
Satsuki Ayaya

CLE Autistes (FR)
Garance Jacquot (Secretary) for the Board

Autisme- og Aspergerforeningen for Voksne (DK)
Nina Catalina Michaelsen (Chairperson), Silke Rudolph (Board Member/Treasurer)

Inicijativa za autizam i ostale neurodivergentnosti, samozastupanje i kulturu različitosti ASK(autistic initiative)(HR)
Kosjenka Petek, Sunčica Lovrečić Čekić

Aspies e.V.(DE)
Hajo Seng, Rainer Döhle (Chairs)

Autistics Unmasked (US)
Heini Natri

Adventor o. s. (CZ)
Michal Roškaňuk (Chairman)

A-komunita (CZ)
Vojta Bartošík (Chairman)

Asociación Autistas de Mexico (MX)
Yadira Garcia Rojas (President), Giovanna Villarreal Estrada (Secretary)






私たちは「深まった自閉症(profound autism)」という言葉を採用する提案に大きな問題を感じています。また、より新しく有望なアプローチを排除し、行動的介入に全体的に重点を置いていることも問題だと思います。私たちは、薬物療法や行動療法を含む短期的な介入のための無作為化比較試験に臨床研究を集中させるという勧告に反対します。