Umwelten

De Sensatie van een Goed Leven (SGL)

🏛️Operational

6 min read

Summary

De Sensatie van een Goed Leven — “The Sensation of a Good Life” — is the four-year participatory action research project out of which Sensonate was born. It ran from 2016 to 2020 at the Toegepast GezondheidsOnderzoek (TGO) unit of Universitair Medisch Centrum Groningen (UMCG), under the national Gewoon Bijzonder knowledge programme, with funding from ZonMw. Its goal was to pull together what practitioners, researchers, and families collectively knew about sensory processing in autistic people with intellectual disabilities, and to turn that knowledge into something usable. The project brought together more than fifty organisations — care providers, schools, training institutes, advocacy bodies, insurers, and universities — under a common methodology, and produced the public-facing platform sensonate.nl, launched on 22 April 2020.

Why it existed

Autistic people with co-occurring intellectual disability are repeatedly under-represented in research on sensory processing. The SGL team flagged this directly: at the International Meeting for Autism Research (IMFAR) in 2017, only 8 of many hundreds of posters addressed the combination, and in 2018 only 12 did. This population is at high risk of severe behavioural difficulties and is also where diagnosis tends to be most incomplete — people get a label of intellectual disability and their autism is not named, so support plans miss half the picture. SGL set out to push against that neglect by generating and consolidating knowledge that could change day-to-day practice.

Research team and leadership

  • Project leads: dr. J.A. Landsman-Dijkstra and dr. Andrea Fokkens (UMCG TGO, Gezondheidswetenschappen department)
  • Academic researcher: Marieke Werkman (UMCG doctoral researcher), whose 2020 paper in Research in Autism Spectrum Disorders is the project’s principal peer-reviewed output
  • Literature synthesis authors: prof. em. Ina van Berckelaer-Onnes (Leiden University), Yvette Dijkxhoorn (senior researcher, developmental disorders, Leiden orthopedagogy), and Miriam Hufen (occupational therapist, director of Anders Kijken naar Kinderen, Leiden)
  • Contact: [email protected] (project inbox)

Timeline

  • 2016–2017 — Needs analysis phase. Mapping what the field already knew and what the field didn’t yet realise it needed.
  • 2018 — Knowledge synthesis phase. Commissioning of the Leiden literature review (van Berckelaer-Onnes, Dijkxhoorn & Hufen 2018 — SGL literature synthesis), dated 26 May 2018. Goal-setting across the network partners. Development of the “What is a Good Life?” conceptual framework.
  • 2019 — Plan development. Translation of knowledge into practical applications for carers, parents, teachers, and autistic people themselves.
  • Early 2020 — Website construction by OQTOO.
  • 22 April 2020 — Official launch of sensonate.nl.
  • 2020 onwards — Implementation, evaluation, and ongoing stewardship (see below).

Methodology: Adapted Intervention Mapping (AIM)

SGL used Adapted Intervention Mapping, a six-step participatory research approach in which the output of each phase determines the shape of the next. The method is deliberately organic — network partners stay involved throughout rather than being consulted at the start and ignored for the duration. For a project with fifty-plus partners across care, advocacy, academia, and education, AIM was the mechanism that let a large and diverse coalition actually co-produce something coherent.

Four core objectives

  1. Generate knowledge about the combination of autism, intellectual disability, and sensory processing.
  2. Provide insight into individual sensory processing patterns.
  3. Support selection of personalised intervention approaches, matched to the individual rather than applied generically.
  4. Facilitate communication among all parties involved — autistic people themselves, families, carers, teachers, clinicians, researchers.

Network partners

Over fifty organisations participated. The publicly-named core includes:

  • Nederlandse Vereniging voor Autisme (NVA) — the Dutch Autism Association, which now stewards sensonate.nl
  • Landelijke Federatie belangenbehartigers voor mensen met een Beperking (LFB) — self-advocacy organisation for people with intellectual disabilities
  • Academische Werkplaats Autisme — supports the platform’s ongoing development
  • Alliade — care provider
  • Universiteit Leiden (orthopedagogy) — via van Berckelaer-Onnes and Dijkxhoorn
  • Anders Kijken naar Kinderen (Leiden) — via Miriam Hufen
  • OQTOO — design and development of sensonate.nl
  • Overstekend-Wild network partners
  • Multiple care institutions, schools, training institutes, autism networks, academic autism workshops, health insurers, and knowledge institutes

Outputs

Website (sensonate.nl, launched 22 April 2020):

  • Articles on theoretical knowledge of sensory processing
  • Experience narratives that illustrate individual sensory profiles through abstracted stories
  • Practical guidance tips for daily support
  • Tools and resources for personalised interventions (including the prikkelprofiel self-assessment framework)

Formal knowledge documents (2018):

Peer-reviewed publication:

Current stewardship

Since 2020, sensonate.nl has been maintained by NVA with support from the Autisme Fonds and the Academische Werkplaats Autisme. Sensonate is now continuing under Stichting Bruggenmakers, with Karol Henke — former NVA director — leading the internationalisation of the programme. The wiki you are currently reading is part of that next phase: building the institutional knowledge base that makes Sensonate’s work queryable, translatable, and transferable as the programme scales beyond the Netherlands.

Lessons and tensions

The SGL team were explicit about a research imbalance they did not fully fix: even four years of focused work on autism + ID could not compensate for decades of research skew towards higher-functioning autistic people without ID. Werkman’s 2020 cohort, although unusually broad in IQ range (<40 to >130), still surfaced a counter-intuitive finding — that higher cognitive abilities were associated with more emotional and behavioural problems in relation to atypical sensory processing. That result complicates any assumption that cognitive capacity is protective, and it raises hard questions about how sensory processing care is currently distributed.

A second tension, flagged in the 2018 synthesis, is the near-absence of ID+autism participants from the Nederlands Autisme Register (NAR), particularly at IQ <56. Most people in that range live in care institutions and are not registered. SGL started a campaign to improve NAR representation, but the underlying problem — that our most valuable datasets systematically exclude the people who most need to be in them — is still open.

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