Evidence map›Paper›PMID 37780169›Full record

ArticleFrontiers in psychology2023

Clinical stance on response initiation in autistic adults: co-creating an integrative approach based on theory and lived experiences to act from language, via motor movement to wellbeing.

Kirstin Greaves-Lord, Manna Alma, Benjamin de Graaff, Jeanet Landsman, Klaske van der Weide, Gabrine Jagersma, Theo Beskers, Marieke Wubs, Henri Mandemaker, Emma van Daalen and 6 more

Abstract read
In one paragraph

Article in Frontiers in psychology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Kirstin Greaves-LordJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Manna AlmaDepartment of Health Sciences, Applied Health Research, University of Groningen, University Medical Center Groningen, Groningen, Netherlands.
Benjamin de GraaffJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Jeanet LandsmanDepartment of Health Sciences, Applied Health Research, University of Groningen, University Medical Center Groningen, Groningen, Netherlands.
Klaske van der WeideJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Gabrine JagersmaMental Health Institution GGZ Rivierduinen, Leiden, Netherlands.
Theo BeskersPAS Nederland, Hague, Netherlands.
Marieke WubsVrij Leven ACT Coaching, Dordrecht, Netherlands.
Henri MandemakerNederlandse Vereniging voor Autisme, De Bilt, Netherlands.
Emma van DaalenDepartment of Child and Adolescent Psychiatry/Psychology, Erasmus MC, Sophia's Children's Hospital, Rotterdam, Netherlands.
Joost van der LindeJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Anne Fleur StapertJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Jeroen BekiusJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Sigrid PieningJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Annemiek LandlustJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Ingrid D C van BalkomJonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Getting 'stuck', literally and figuratively, is a common experience for autistic people. Literally 'stuck' means exhibiting limited response initiation due to immobility with tense muscles and inability to move. Figuratively 'stuck' means loneliness, passivity or captivity in activities that do not offer long-term satisfaction. To further conceptualize this complex phenomenon of limited response initiation in autistic individuals, we performed qualitative interviews and focus groups with autistic people and their family members, followed by brainstorm sessions and a Delphi study with input from a larger panel of experts from multiple backgrounds. We aimed to co-create the outline of an integrative approach to support autistic people in moving away from this 'stuck state' to more flexible, limber 'supple states' in order to live freer, more meaningful, satisfying and peaceful lives. Over time, in interaction with all participants, our shared insight grew. Based on this, we here stipulate a conceptual framework, in which the described 'stuck state' at the micro-level of the muscles/behavior of one individual, probably is caused by feeling/being 'stuck' or 'cramped' at several overarching (i.e., meso and macro) levels. For instance, stuck in relationships with unhealthy dynamics, stuck at home creating short-term calm, trance-like states (e.g., gaming), stuck at an educational level that might fit the individuals' current social-emotional state rather than their potential cognitive level, stuck in a job that pays the bills but does not feel meaningful, nor contributes to a satisfying life with opportunities for personal development. Stuck in a mental/public health care system where ever ongoing changes in policies hinder sustained support to suit care-needs. Stuck in a regulated societal system making it likely to repeatedly get stuck. Is this phenomenon specific to autism? Formally we have only conducted interviews with this population, but in another smaller, related project we also spoke to people from the general population with careers that are considered successful in the general society. These people actually voiced similar experiences. Therefore, we hypothesize that this numbing state of being or feeling 'stuck' may be a prevalent phenomenon that needs to be addressed. In this article, we discuss several types of interventive approaches (i.e., language-based talking therapies, affective experiential expressive therapies, physical therapies and systemic therapies), prevention as well as intervention programs, directed at different primary stakeholders, that can complement and enrich each other in an integrative policy, that leads to tailor-made, personalized trajectories of interdisciplinary support to enable people to live satisfying, meaningful, dignified and peaceful lives.

Indexed as

activationautismimmobilityinclusive society/spacesinertia

Identifiers

PMID37780169
PMCPMC10539615

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.