Autistic Perspectives on the Future of Clinical Autism Research

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Autistic Perspectives on the Future
of Clinical Autism Research
Heta Pukki, MEd, MSc,
1
Jorn Bettin,
2
Avery Grey Outlaw,
3
Joshua Hennessy, MA,
4
Kabie Brook,
4
Martijn Dekker,
5
Mary Doherty, MB ChB FCARCSI,
6
Sebastian C.K. Shaw, BM BS, MSc, PhD, PGCert, DRCOG, MAcadMEd, FHEA,
7
Jo Bervoets, MS,
8
Silke Rudolph,
9
Thibault Corneloup, MS,
10
Kylieanne Derwent,
11
Onemoo Lee,
12
Yadira Garcia Rojas,
13
Wenn Lawson, PhD,
14
Monica Vidal Gutierrez,
15
Kosjenka Petek,
16
Myria Tsiakkirou,
17
Annikka Suoninen, PhD,
18
Jo Minchin,
19
Rainer Do¨ hle,
20
Silke Lipinski, MA,
21
Heini Natri, PhD,
22
Emma Reardon,
23
Giovanna Villarreal Estrada,
13
Ovidiu Platon,
24
Nick Chown, PhD,
25
Ayaya Satsuki, PhD,
26
Damian Milton, PhD, MA, PGCert, PGCE, PGCHE, PGDip(conv), BA(Hons), MBPsS,
27
Nick Walker, PhD,
28
Ondrej Roldan,
29
Ba´ rbara Herra´n,
30
Citlali Limo´ n Can˜ edo, Lic,
31
Sue McCowan, MBBS MRCGP,
7
Mona Johnson, MB ChB MRCGP FCCI,
7
Eleanor Jane Turner, PhD, FRCS,
7
Jessy Lammers,
10
and wn-ho Yoon, PhD
12
Keywords: autistic people’s priorities, autism research, collaborative participation, neurodiversity paradigm,
participatory research
1
European Council of Autistic People z.s., Prague, Czech Republic.
2
Autistic Collaboration Trust, Auckland, New Zealand.
3
Autistic Self-Advocacy Network, Washington, District of Columbia, USA.
4
Autism Rights Group Highland, Inverness, Scotland, UK.
5
European Council of Autistic People z.s, Prague, Czech Republic.
6
Autistic Doctors International, Dublin, Ireland.
7
Autistic Doctors International, United Kingdom.
8
Lees- en Adviesgroep Volwassenen Autisme vzw, Antwerpen, Belgium.
9
European Council of Autistic People z.s, Prague, Czech Republic.
10
CLE Autistes, Paris, France.
11
The Autistic Realm, Nowra Hill, Australia.
12
estas, Seoul, Korea.
13
Autistas de Me
´xico, A.C., Ciudad de Mexico, Me
´xico.
14
Independent, Warrnambool, Australia.
15
Mi Cerebro Atı
´pico/Asociacio
´n Autistas de Colombia, Bogota, Colombia.
16
Incijativa za autizam i ostale neurodivergentnosti, Zagreb, Croatia.
17
European Council of Autistic People z.s, Prague, Czech Republic.
18
Suomen Autismikirjon Yhdistys ry., Helsinki, Finland.
19
The National Autistic Taskforce, Lincoln, United Kingdom.
20
Aspies e.V., Berlin, Germany.
21
Autismus-Forschungs-Kooperation, Berlin, Germany.
22
The Translational Genomics Research Institute, Phoenix, Arizona, USA.
23
Autism Wellebing CIC, Carmarthen, Wales, UK.
24
Asociat
,
ia suntAutist—Autismul explicat de autis
,
ti, Timisoara, Romania.
25
Independent Autism Research Group, Cradley Heath, United Kingdom.
26
Otoemojite Neurodiversity Self-Help Group, Tokyo, Japan.
27
The Participatory Autism Research Collective, Canterbury, United Kingdom.
28
California Institute of Integral Studies, San Francisco, California, USA.
29
Adventor, Prague, Czech Republic.
30
Mi Cerebro Atı
´pico, Lima, Peru
´.
31
Independent, Jalisco, Me
´xico.
ªHeta Pukki et al., 2022; Published by Mary Ann Liebert, Inc. This Open Access article is distributed under the terms of the Creative
Commons License [CC-BY] (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in
any medium, provided the original work is properly cited.
AUTISM IN ADULTHOOD
Volume 4, Number 2, 2022
Mary Ann Liebert, Inc.
DOI: 10.1089/aut.2022.0017
93

The Lancet Commission on the Future of Care and
Clinical Research in Autism recently published their
recommendations for what should be done in the next 5 years to
address the current needs of autistic individuals and families.
1
Although the Commission includes many prominent clinicians
and researchers from around the world, as well as some autistic
advocates and parents of autistic people, there have been
widespread expressions of dissatisfaction among autistic peo-
ple and communities regarding these recommendations.
We, the Global Autistic Task Force on Autism Research
are a group of autistic professionals and representatives of
organizations run by and for autistic people. We are autistic
clinicians, therapists, educators and researchers, parents, and
family members of autistic people of all ages and with all
types of support needs, as well as individuals with high
support needs. Among us are also autistic people of color,
autistic people from the Global South and Asia, autistic
women, and autistic people belonging to gender minorities.
Despite aiming at bringing together different stakeholders,
representation within the Lancet Commission was limited in
these respects. We hope to bring more voices to the discourse.
We previously wrote an open letter to the Commission to
draw attention to our main concerns.
2
In this editorial, we
offer a more detailed discussion of the Commission’s report,
as well as our own recommendations for future directions in
autism research and care.
The Commission gives detailed recommendations on the
types of studies and the research themes they consider most
important for funding, highlighting randomized controlled
trials for short-term interventions, including medication and
behavioral trials, as a priority. The Commission recommends
more research on the usability of diagnostic methods and
practices in different countries, and it considers it necessary
to bring about system change, by which they mean making
local and national systems more effective at delivering diag-
nostic services and interventions.
In addition, the Commission proposes a classification of
‘‘profound autism’’ be adopted as an administrative term to
apply to autistic children and adults with high support needs,
for example, those with a co-occurring intellectual disability
or limited ability to communicate by using spoken language.
The Commission endorses research on genetics, biomark-
ers, and the development of medications to treat autism as
well as co-occurring conditions, but it stresses the impor-
tance of investing resources in research focusing on practical
clinical approaches, strategies, and treatments that can be
implemented immediately to yield faster results. To imple-
ment the various clinical approaches effectively, the Com-
mission proposes a ‘‘stepped care and personalized health
model for interventions in autism.’’
The proposed model starts with identifying the relevant di-
agnoses or conditions that require services, prioritizing needs,
and defining the goals of treatments. The model also involves
considering individual and family factors that may affect
treatment success, as well as the accessibility and cost of the
various interventions. These interventions are described as fo-
cusing on ‘‘building skills that are absent or diminished,’’ such
as neurotypical social skills, as well as ‘‘reducing behaviors or
feelings that have negative effects,’’ such as temper tantrums,
aggression, depressive feelings, irritability, or hyperactivity.
Also, the Commission highlights as one of their key
messages that ‘‘valuing autism and neurodiversity benefits
society as a whole,’’ and it argues that neurodiversity, along
with other factors, is ‘‘important for an understanding of
any autistic individual and of the differences between indi-
viduals who have this diagnosis.’’
We believe that the report falls short of truly including
autistic perspectives. We focus on several key concerns:
(1) We feel the report inadequately incorporates the advo-
cacy and scholarship of autistic people and misunderstands
the neurodiversity paradigm; (2) we consider the functional
classification of ‘‘profound autism’’ to be misleading and
counterproductive; and (3) we point out that the Commis-
sion’s recommendations are in certain respects incomplete
and, therefore, risk misrepresenting the necessary priorities
for the next 5 years.
We close with a call to action, based on recent research
on participatory approaches, in which we propose to set up
true collaborative efforts in the spirit of the Commission’s
proposals, including our autistic perspective from the outset
rather than as a mere output quality check.
Limited Consideration of the Advocacy
and Scholarship of Autistic People
We find it encouraging that the Lancet Commission men-
tions the importance of collaborative participation when
discussing the future of autism research, and we look forward
to being increasingly included as collaborators.
We also find it positive that the Lancet Commission
recognizes the need for systemic change and participatory
research with all stakeholders, as well as the need for quality
standards in autism research with randomized trials. Simi-
larly, it is positive that the report discusses the urgent needs
of autistic adults, although briefly, and that there were some
autistic members in the Commission.
Nevertheless, it seems that as autistic adults and producers of
knowledge on autism, the vast majority of autistic people in
general, as well as autistic researchers, have remained invisible.
For example, key studies and reports mapping autistic people’s
priorities regarding autism research have not been cited.
3–8
These provide some broader context: Most autistic people’s
primary wishes for the next 5 years would not concern clinical
interventions but matters of law, ethics, policy, and how these
translate into support practices and realization of human rights.
3
More than three decades of individual and collective
advocacy, scholarship, and development of theory and praxis
by autistic people were covered by the Commission under
the heading of parent and family advocacy, in three words:
‘‘increasingly, self-advocacy.’’ Autistic people who offer
their expertise and experience-based knowledge appear to
be generalized as ‘‘more able’’ despite our widely varying
support needs, and despite many of our organizations focus-
ing partly or primarily on the needs of those who are less able
to advocate for themselves.
9–11
Similarly, we appear to be
grouped under the title of the neurodiversity movement,
despite our different approaches and varying levels of em-
phasis on the concept, and despite the history of the autistic
rights movement preceding it.
12,13
Regarding the neurodiversity paradigm, we wish to point
out that considering something as natural variation does not
equal claiming that it ‘‘does not need intervention.’’ It means
preferring interventions that target systems and environ-
ments, supporting individuals to thrive as they are, instead
94 PUKKI ET AL.

of trying to bring them closer to the ‘‘perceived norm.’’
14–19
We agree with the Commission’s observation that ‘‘not all
autistic people and stakeholders identify with the neuro-
diversity movement.’’ We would welcome research on the
distribution of people identifying with the neurodiversity
movement or paradigm versus identifying with clinical and
other portrayals of autism.
We also wish to point out that researchers embracing the
neurodiversity paradigm do not comprise a new phenomenon.
20
It has been encouraging to see the increasing number of estab-
lished autism researchers re-considering the traditional framing
of autism and recommending this approach to colleagues.
21,22
On a fundamental level, we need to be seen from the dual
perspectives of minority and disability. We find it positive
that the Lancet Commission suggests using the International
Classification of Functioning, Disability and Health in
research. However, the authors consistently refer to autism
as a ‘‘disorder’’ rather than a ‘‘disability,’’ while equally
consistently using the expressions ‘‘intellectual disability’’
and ‘‘learning disability.’’ This terminology appears to sig-
nal that autism itself belongs to the category of illness or
disease, rather than neurodivergence or disability, both of
which would allow for the inclusion of positive characteris-
tics as part of the core definition of autism.
23
The Term ‘‘Profound Autism’’
The Commission proposes the label of ‘‘profound autism’’
to be adopted as a term to apply to autistic children and adults
who have or are likely to have particular support needs,
specifically, those ‘‘requiring 24 hours access to an adult
who can care for them if concerns arise, being unable to be
left completely alone in a residence, and not being able to
take care of basic daily adaptive needs.’’ The commission
notes that in most cases, these needs will be associated with
a substantial intellectual disability, very limited language,
or both, effectively creating a label to classify the most vul-
nerable autistic individuals. The Commission further states
that the term ‘‘profound autism’’ was chosen as the term
‘‘low-functioning’’ is disliked by many.
We do not agree with the proposal to adopt ‘‘profound
autism’’ as an administrative term. For more than 30 years,
autistic people have resisted functioning labels as misleading
and offensive.
24,25
‘‘Profound autism’’ would be a step back,
even as ‘‘low-functioning’’ is falling out of use.
The term would not be sufficient to steer service provi-
sion or research efforts, just as functioning levels never were. It
provides no useful information to others who may need to
interact with the autistic person. High support needs are as-
sociated with co-occurring characteristics and health issues in
many combinations, and the level of support needs often
fluctuates. It is clearer to use brief descriptions such as ‘‘au-
tistic person with intellectual disability,’’ ‘‘autistic person with
minimal language,’’ or ‘‘autistic person with extreme anxiety
and co-occurring physical condition.’’ Expressions such as
‘‘autistic person with high support needs’’ or ‘‘autistic person
requiring 24-hour care’’ are also useful.
The term would also give the false impression of intellectual
disability and impaired language development being core
characteristics of autism. An autistic person with these char-
acteristics would somehow be ‘‘more autistic,’’ or closer to the
deep end of an imaginary linear spectrum, than an autistic
person without them. ‘‘Profoundly autistic’’ would mislead-
ingly refer to people who actually have profound impairments
that are not autism specific, while not necessarily having any
particularly extreme autistic characteristics.
Participatory Research
Participatory research gets two brief mentions in the Com-
mission report. The Commission states that research should in
all contexts embrace a participatory approach that includes
autistic people, alongside other stakeholder groups. This stated
importance is not reflected in the rest of the report, as no
definitions of good examples of participatory research are of-
fered, and only one citation is provided. The only examples of
participatory roles that the Commission suggests for autistic
people in the context of clinical research are ‘‘consulting on
the details of clinical trials and outcome measures.’’
The participatory approach is a crucial element in all future
autism research. A body of literature exists on its principles,
practices, and significance.
26–33
Anything that will truly help
needs to be co-designed, developed, and evaluated with the
involvement of autistic people. It has positive implications
for the wider research agenda, in particular when established
non-autistic autism researchers collaborate meaningfully
with autistic scholars. We need approaches that value and
center autistic voices, experiences, and expertise.
As participants, autistic people can correct misperceptions
regarding concepts developed by autistic communities,
researchers, and scholars, including neurodiversity and the
neurodiversity paradigm,
34–36
the double empathy prob-
lem,
37
autistic inertia,
38
monotropism,
39
hyperfocus,
40
and
autistic space.
41
We can offer insights on the therapeutic and
empowerment value of self-help activities and the positive
aspects of engaging in intense interests, as well as introducing
emerging ideas such as sensory trauma,
42
the co-creation of
extended autistic families, and community-based mentor-
ing.
43
These concepts have implications for clinical research,
including early intervention,
44
and can lead research to new,
more effective directions.
Research Topics and Approaches
The Lancet Commission highlights randomized controlled
trials for short-term interventions, including medication and
behavioral interventions, as a priority in clinical autism
research. The Commission emphasizes the need for trials to
test the relative efficacy of different types, intensities, and
combinations of interventions, as well as assessing the gen-
eralization of particular interventions and moderators of
response and outcome.
Although the Commission states that the inclusion of
stakeholders in the development of trial designs and outcome
measures is vital, we do not believe that the Commission’s
recommendations regarding clinical trials adequately con-
sider the needs and well-being of autistic people. As such, we
do not believe that the Lancet Commission’s recommenda-
tions can lead to improvements in the lives of autistic people,
or the lives of our autistic children, within the next 5 years.
Instead, we urge focusing more resources on causes of
mortality, improving our access to health care
45–49
and men-
tal health support,
50–53
and large-scale monitoring of the
effects of better access. This should include the impact on
the detection and treatment of co-occurring conditions. We
AUTISTIC PERSPECTIVES ON CLINICAL AUTISM RESEARCH 95

find it particularly surprising that the mortality studies pub-
lished over the past few years received very little attention
in recommendations for clinical research.
54–58
We need clinical research to tackle the problem of harmful
pseudoscientific treatments, mapping their use and effects on
mental and physical health, as well as improving awareness
among clinicians and carers.
59
We need more research on assisted and augmented com-
munication and supported decision making in the context
of clinical work and care. To autistic people with limited
communication, they are crucial to accessing health care
and the appropriate delivery of medical and care services.
Advocacy organizations often appear to be needed to ensure
the right to use them, when this should be part of the work
of clinical and care staff.
60,61
We need more research on how stressful environments,
being misperceived by others, lack of appropriate social and
disability services, lack of reasonable accommodations,
stigma, discrimination, and bullying affect the health of
autistic people, contributing to anxiety and depression, and
how such effects can be mitigated.
62–66
A counseling meth-
odology for autistic and other neurodivergent people needs
to be developed and tested.
We also urgently need research on large-scale, affordable,
and accessible screening and diagnosis for all age groups, in
all parts of the world, especially in low-income and middle-
income countries (LMICs).
67,68
Diagnostic services must be
seen as a basic right for all autistic people, not something that
clinicians grant at their discretion or only when the diagnosis
can lead to the provision of interventions. Diagnosis helps
both children and adults to develop identity, self-knowledge,
and personal strategies, and to start engaging in peer support,
self-advocacy, and collective advocacy. These can be crucial
to well-being, quality of life, and realization of basic rights,
especially when very little else is available.
69
The Commission has recognized the importance of research in
adolescents and adults. However, we find that the recommenda-
tions for clinical research fall short, offering no concrete sug-
gestions for topics or types of research. Repeating that something
is urgently needed does not provide sufficient guidance.
The social
70
and human rights
71
models of disability
should be understood and applied in the context of clinical
work, leading to research and practice models that target
systems, not just us as individuals. The existence of inter-
ventions with the goal of ‘‘optimizing person-environment
fit’’ has been recognized by the Commission, which is a
promising first step, but again this is not linked to concrete
recommendations. Studies focusing on the Double Empathy
Problem
37
and unconscious negative perceptions of autistic
people
16,63
provide both theoretical frameworks and exam-
ples of practical interventions.
16,17,44
Some aspects of the Treatment and Education of Autis-
tic and related Communications Handicapped Children
(TEACCH) programme, covered by the Commission in two
sentences, might also offer starting points as a decades-old
approach focused on adjusting environments.
72
Educational
and employment interventions need to be developed that
promote positive uses of autistic people’s intense interests
and capacity for passionate focus, seeing the potential at
the system level. They should not be dismissed as signs of
‘‘restricted’’ thinking or limited to being used in teaching
social interaction as happens in the Program for the Educa-
tion and Enrichment of Relationship Skills (PEERS), which
the commission consistently recommends.
1
Studying system change may not be amenable to controlled
trials or commodification of intervention services. This does
not diminish its significance. We need clinical research to
work in collaboration with other fields of autism research,
becoming part of a fundamental cultural shift in approaching
autism, instead of falling outside it and operating in isolation.
Addressing Harmful Research and Treatments
The Lancet Commission discusses the problem of pseudo-
treatments being promoted in popular literature and on the
Internet, using the term ‘‘non-evidence-based treatments,’’
and stressing the responsibility of clinicians to be informed
on which treatments are evidence-based, to be able to guide
and advise caregivers.
However, we feel that some important aspects of this topic
did not receive enough attention. Autistic children, adoles-
cents, and adults with limited ability to advocate for them-
selves need to be actively protected from malpractice.
59
Early autism research often objectified autistic people, and
in many cases caused immense harm. Unfortunately, this can
still happen. Historically, autistic children and dependent
adults who are unable to give informed consent have been
enrolled in experiments that may not have been allowed on
non-autistic people, based on weak, far-fetched hypotheses.
This has fed the creation of new pseudo-treatments. Research
that focuses on pseudo-cures decenters the voices of autistic
people regarding our actual needs and priorities.
We wish to draw attention to the fact that many pseudo-
treatments have been initially trialed at universities and
other research institutions, or promoted by them, including
‘‘packing,’’
73,74
holding therapy,
75
secretin,
76
hyperbaric
oxygen,
77
fecal transplants,
78,79
oxytocin,
80
and injections of
stem cells,
81
to name only a few. Clinical trials can be driven
by the promise of commercializing a new ‘‘solution,’’ and by
negative bias and disdain toward autistic people. It is nec-
essary to recognize that some structures and practices of the
academic world allow or even support the development of
pseudo-treatments, which seek a thin veil of apparent aca-
demic credibility to attract followers and funding.
Autistic people’s organizations have attempted to draw at-
tention to the fact that defining the behavioral characteristics
listed in diagnostic criteria as ‘‘core,’’ and trying to develop
biological treatments with behavior as the primary target and
means of measuring success, is both unwanted by many autistic
peopleandlikelydestinedtofail;similarbehaviordoesnotequal
similar biology.
82
The inherent fallacy in this approach is likely
to contribute to continuous generation of pseudo-treatments. We
urge researchers to focus the development of medications on co-
occurring health problems that autistic people identify as dis-
tressing, and to target clearly identifiable biological factors in-
stead of behaviors, with the aim of improving autistic people’s
quality of life and appreciating neurodiversity in this context as
well as others. We predict that for many of us, better health
would automatically lead to some positive changes in cognition
and behavior as well as quality of life and well-being.
Behavioral Concepts and Interventions
We are particularly concerned about the dominant role
of behavioral interventions, concepts, and interpretations of
96 PUKKI ET AL.

autism that is evident throughout the Commission’s text.
For example, the word ‘‘behavior’’ appears in the Commis-
sion’s publication 161 times; in contrast, the word ‘‘cogni-
tive’’ only appears 32 times, ‘‘quality of life’’ 12 times,
‘‘sensory’’ 9 times, and ‘‘wellbeing’’ only 4 times. The
Commission endorses the use of behavioral interventions
to target autistic behavioral and social communication
differences and underlines conducting randomized con-
trolled trials for short-term interventions, including behav-
ioral trials, as a priority.
Autistic-led organizations have engaged in widespread
criticism, activism, and campaigning focusing on behavioral
approaches, including recent appeals to the UN Committee on
the Rights of People with Disabilities.
83
We see this especially
in countries where the methods have been used extensively.
Changing behavior, as such, should not be the main goal of
clinical research or treatment for autistic people of any age.
Appearing autistic or acting in typically autistic ways should
not be considered an illness. Clinicians need to be aware of
the potential mental health risks of ‘‘camouflaging’’ and
avoid encouraging or manipulating autistic people to engage
in it, even through naturalistic or play-based methods.
84,85
Keeping in mind health and well-being as the goals of clinical
work, and the fundamental principle of beneficence, research
should explore the long-term effects of behavioral interven-
tions on autistic adults who have been subjected to them, as
there have been reports of adverse effects.
The lack of an evidence base for older forms of Applied
Behavior Analysis (ABA) has been mentioned by the Lancet
Commission. However, there are other concerns that need
to be addressed. In the past, unethical ABA practices inclu-
ded physical abuse and using the method in gay conversion
therapy. Those who applied such practices included key
developers of the methodology, such as Dr O. Ivaar
Lovaas.
86,87
This history needs to be openly admitted and
the practices clearly renounced. There are other continuing
ethical concerns,
88
as well as issues with the evidence base
of behavioral approaches more generally.
For example, Cochrane Review and meta-analysis of early-
intervention ABA (early intensive behavioral intervention)
found the overall quality of evidence low or very low.
89
Se-
venty percent of ABA research has been reported to involve
conflicts of interest, with less than 6% of the researchers de-
claring the conflicts.
90
A recent US Department of Defence
report on their Autism Care Demonstration program, which
involves 47,000 certified ABA professionals and provides
services to nearly 16,000 autistic people, mostly children and
adolescents, expressed serious concerns about the lack of re-
sults from their ABA provision.
91
Because of the emphasis on behavioral interventions, the
Commission also appears to have ignored a number of
more recently developed, promising possibilities.
15–19,44,92,93
Researchers need to hear the many families that are seek-
ing approaches that are more in alignment with the neuro-
diversity paradigm, and which are more oriented to the
long-term well-being of autistic children than to their com-
pliance with neurotypical behavioral norms.
In the light of the what has been stated earlier, elevating
behavioral approaches above other therapeutic, habilitative, and
educational methodologies to the status of medical treatments,
and promoting them as treatments in LMICs, is considered by
many autistic people a mistake of massive proportions.
Call to Action
To illustrate our ongoing work, we wish to name a few
examples that clinical researchers might want to be aware
of, and that could function as starting points for further
discourse.
In 2011, the Academic Autism Spectrum Partnership in
Research and Education (AASPIRE) described a model for
using Community Based Participatory Research (CBPR) to
partner with autistic people, based on lessons from the first
5 years of their research collaboration.
27
In 2017, a Starter
Pack for Participatory Autism Research
94
was published by
the participatory Research Collective in the United Kingdom,
followed in 2019 by a German Checklist for Autism Friendly
Research.
31
Also in 2019, the National Autistic Taskforce published
An Independent Guide to Quality Care for Autistic People,
describing quality provision for those with high support
needs
95
; a Dutch autistic-led project published a report on
Onderzoeksagenda Autisme, the most detailed study avail-
able on the research priorities of autistic people and other
stakeholders
8
; and AASPIRE published ‘‘The AASPIRE
practice-based guidelines for the inclusion of autistic adults
in Research as Co-Researchers and Study Participants.’’ In
2021, The European Council of Autistic People presented
preliminary results of a survey mapping the research priori-
ties of autistic people in 12 languages.
96
This year (2022), the
Autistic Self Advocacy Network released a report titled ‘‘For
whose benefit? Evidence, ethics, and effectiveness of autism
interventions,’’ creating a template for a core set of under-
lying ethical principles for autism-related services.
97
Although many ethical issues and questions remain
unaddressed,
98
it is encouraging to see an attempt at con-
sidering such ethical issues in clinical autism research and a
call for ‘‘constructive collaborations’’ with autistic people
and the wider autism community.
99
However, although this
is a welcome development, at times such collaborations
have appeared merely performative.
We invite researchers and clinicians to join the critical
conversation about ethics in autism research and services,
and to actively include the voices of diverse autistic indi-
viduals and communities in their work. We wish to draw
attention to power imbalances and lack of accessibility in
such discourse. We lack platforms and channels to reach the
research and clinical communities effectively. Current
common practice that exacerbates the power imbalance is
inviting individual autistic people to take participatory roles
in research projects, representing their own ‘‘lived experi-
ence’’ only; in these roles, they are isolated, engaging with
powerful organizations as individuals, often with very lim-
ited personal resources.
We call for the creation of shared platforms for continu-
ing discourse on autism research at the global level, engaging
autistic individuals as well as the organizations we have
formed to advocate for our rights collectively.
Ways Forward
We came together as an ad hoc committee to respond to the
Lancet Commission. Although time pressures prevented us
from extensive surveying of autistic stakeholders, our col-
lective history of engagement in autistic communities and
discourses allows us to state with some confidence that we
AUTISTIC PERSPECTIVES ON CLINICAL AUTISM RESEARCH 97

represent the views and interests of a significant proportion of
autistic people. We are aware of the limitations of the process
we have engaged in, but we suggest that learnings from it
could be used and expanded upon.
We hope to move toward a more permanent and system-
atically developed global body of autistic people, reaching
larger numbers of autistic communities to establish a global
pool of NGO representatives, community leaders, research-
ers, and scholars interested in engaging in autism research
and related public discourse. This would allow widespread
implementation of previous recommendations of involving
community leaders as well as individuals representing the
wider autistic community, equalizing some of the power
imbalance.
27,28
It would introduce the possibility of involv-
ing autistic people who are not interchangeable even when
they disagree or criticize, being mandated and supported by
their autistic and academic communities.
To break existing imbalances, it is also imperative to dif-
ferentiate key stakeholders. In the case of autism research,
stakeholders such as parents, caregivers, and clinicians are
driving the research agenda. For decades, researchers have
suggested therapies or interventions, often dismissing the
views of those who have received them. Acknowledging
autistic people as the key stakeholders is an essential and
fundamental step forward. It could allow experience to be
absorbed and transformed into knowledge to redefine the
research strategy regarding autism. The research strategy
itself should be community-oriented instead of disorder-
oriented. An inclusive research strategy is a crucial com-
ponent for the long-term positive results benefiting all
stakeholders.
More autistic researchers are needed worldwide to bring
more global attention to their viewpoints on autism. Autistic
people worldwide should be encouraged to enter universities
and undergraduate schools to discover their strengths in
research. However, some universities can be reluctant to
accept autistic students, or they may not have the expertise or
resources to support them. Therefore, we need international
grant programs to support higher education of autistic people.
Many methods and principles that can allow us to
move forward already exist in the literature on participa-
tory research. They have been successfully used in several
countries, allowing us to recognize universal principles.
For example, the ‘‘Toujishakenkyu’’ (Participatory study)
method used by Japanese researchers could serve as one
starting point for researchers everywhere to learn about
autistic people’s issues and insights.
100
To give another example, collaborative consultation, if
implemented with care, could be a positive tool. It has been
suggested that participatory research, nevertheless, is still
the exception rather than the standard, and that much of
the participatory research that does take place is merely
tokenistic.
101
Thus, the most crucial question concerning participatory
research at this point is not how to gain more knowledge
about it, but how to consistently apply what we already know.
To increase accountability in autism research in general, it
is necessary to create clear regulations on ethical engagement
with the wider autistic community, using existing guidelines
as the basis and aiming for global consensus. Increasing
transparency in autism research, tackling conflicts of interest,
and increasing autistic inclusion is crucial in developing
accountability and trust. Autistic researchers, advocates, and
community partners must be included at all levels of autism
research, particularly in leadership.
Autistic people must be involved in setting the research
agenda and have decision-making power in autism research,
and not be merely tokenized. This inclusion is necessary to
ensure that the research is aligned with the needs of autistic
people. We must continue to establish and support groups and
institutions that are aligned with the neurodiversity paradigm
and have sufficient autistic representation. These groups must
be consistently included in the discussion and decision mak-
ing in autism research.
The power imbalance that currently allows interconnected
non-autistic groups and individual researchers to control
which research gets funded, how that research is conducted,
and how research findings are reported must be challenged
and rebuilt to a more equitable, inclusive system that centers
on autistic people’s needs and well-being.
Acknowledgment
The authors wish to thank Dr Sue Fletcher-Watson for
her helpful comments during the preparation of the article.
Authorship Confirmation Statement
All authors have worked as an ad hoc committee where all
participants have contributed by offering ideas, writing brief
paragraphs or individual sentences, suggesting references,
proofreading, and assessing content. H.P., J.B., and w.-h.Y.
have worked as an editing team within the committee.
Author Disclosure Statement
H.P. is an employee of Suomen Autismikirjon Yhdistys, a
non-profit NGO that promotes the empowerment of autistic
people. M.D., S.C.K.S., N.C., and M.J. are all part of a John
and Lorna Wing Foundation funded research project based at
London South Bank University, exploring National Health
Service (UK) General Practitioners’ knowledge, attitudes,
and practices regarding annual health checks for autistic
adults and autism training. M.D. is a member of AIMS-2-
Trials Autism Representatives Steering Committee. S.M. is a
member of the Royal College of Psychiatrists’ Autism Group
(promoting the importance of autism to the psychiatric pro-
fession) and Disabilities Equality Action Plan Working
Group. Other authors declared no conflicting interests.
Funding Information
No funding was received for this article.
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Address correspondence to:
Heta Pukki, MEd, MSc
European Council of Autistic People z.s.
Jec
ˇna
´545/19
120 00 Prague 2
Czech Republic
Email: heta.pukki@eucap.eu
AUTISTIC PERSPECTIVES ON CLINICAL AUTISM RESEARCH 101