Povodom objave medicinskog časopisa Lancet o smjernicama za autizam u kojem nisu uključeni glasovi šire autistične zajednice objavljujemo odgovor u kojem ističemo svoju zabrinutost u vezi mnogih aspekata koji su u članku navedeni.
Otvoreno pismo Lancetevoj komisiji o budućnosti skrbi i kliničkih istraživanja autizma
14. veljače 2022.
Želimo se obratiti Lancetovoj komisiji o budućnosti skrbi i kliničkih istraživanja autizma u ime Globalne radne skupine autističnih osoba za istraživanje autizma, odbora koji čine autistični samozastupnici, istraživači i predstavnici organizacija autističnih osoba.
Kako je Komisija naglasila važnost suradničkog sudjelovanja, radujemo se što ćemo biti uključeni kao suradnici. Čini se da smo uglavnom ostali nevidljivi, površno generalizirani kao “pokret za neurorazličitost”.
Ohrabrujuće je da je komisija prepoznala potrebu za promjenom sustava i vrijednost neurorazličitosti. Međutim, neki propusti su u proturječju s ovom porukom. Nisu spomenute studije koje su u svojim istraživanjima identificirale prioritete autističnih osoba. Participativno istraživanje je spomenuto, ali nije definirano, niti je citirana literatura o njegovim načelima.
Smatramo da je prijedlog usvajanja izraza “duboki autizam” vrlo problematičan, kao i cjelokupni naglasak na bihevioralnim intervencijama, koji isključuje novije obećavajuće pristupe. Ne slažemo se s preporukom da se klinička istraživanja usredotoče na nasumična kontrolirana ispitivanja za kratkoročne intervencije, uključujući ispitivanja lijekova i bihevioralna ispitivanja.
Da bismo poboljšali život autističnih osoba potrebno je na klinička istraživanja primijeniti one koncepte koje su razvili autistični znanstvenici. Potrebna su istraživanja o uzrocima smrtnosti, pristupu zdravstvenoj skrbi i podršci za poboljšanje mentalnog zdravlja. Potrebna su nam istraživanja o random otkrivanju i dijagnozi za sve zemlje, te o zdravstvenim posljedicama sistemskih čimbenika poput diskriminacije, maltretiranja, siromaštva i nedostatka pristupa odgovarajućim uslugama. Potrebna nam je veća uključenost autističnih osoba kako bismo osigurali da klinička ispitivanja budu uistinu etička i kako bismo obuzdali razvoj pseudotretmana.
Pozivamo na formiranje zajedničke, pristupačne platforme za nastavak dijaloga i početak izgradnje suradnje.
Potpisnici (oznaka zemlje u zagradi):
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 Psychiatry Lead)
Participatory Autism Research Collective (UK)
Damian Milton (Chair)
Autismus-Forschungs-Kooperation (DE)
Silke Lipinski (for the working group)
Autistic Collaboration Trust (NZ)
Jorn Bettin (Chairperson)
Quinn Dexter (Advisory Board Member)
estas, Adult Autistic Self-Advocacy Meeting (KR)
Yoon wn-ho (Co-moderator)
Jang Ji-Yong (Co-moderator)
Onemoo Lee
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)
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 (co-Chair)
Rainer Döhle (co-Chair)
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)
Izvorni tekst objave na engleskom:
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.