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van Berckelaer-Onnes, Dijkxhoorn & Hufen 2018 — SGL literature synthesis

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Citation

Van Berckelaer-Onnes, I.A., Dijkxhoorn, Y., Hufen, M. (2018). Prikkelverwerking bij mensen met een Autismespectrumstoornis en een Verstandelijke beperking: een complexe hulpvraag! Groningen: Toegepast GezondheidsOnderzoek (TGO), Universitair Medisch Centrum Groningen. ISBN 978-094-034-0855-2. Commissioned by De Sensatie van een Goed Leven, project leader J.A. Landsman. Funded by ZonMw. Dated 26 May 2018. 46 pages.

What this document is

This is not a peer-reviewed journal article — it is a formal literature synthesis commissioned directly by the SGL project from two co-authoring groups at Universiteit Leiden (Ina van Berckelaer-Onnes and Yvette Dijkxhoorn, Leiden orthopedagogy) and Anders Kijken naar Kinderen (Miriam Hufen). Despite its grey-literature status it is the single most important reference document for the Dutch sensory processing vocabulary and clinical framing, and everything in the wiki that touches on sensory processing in autism with intellectual disability should reference it. The authors searched PubMed, Medline, Embase, PsycINFO, Scholar, Cochrane, Erik, Web of Science, and PsycArticles, including both international and national peer-reviewed literature and Dutch grey literature.

Key findings

  • The DSM-5 (2013) was the first edition of the manual to formally include hypo- and hyperresponsivity to sensory stimuli as a core symptom of autism spectrum disorder. The authors prefer responsiviteit (responsivity) over reactiviteit (reactivity) because a response is not always an active reaction.
  • Sensory processing differences in autistic people are highly heterogeneous: they vary by individual, by sense, and by context. There is no single sensory profile of autism.
  • The combination of autism and intellectual disability is under-represented in research. At IMFAR 2017 only 8 posters addressed the combination; in 2018, only 12 — a small fraction of the total.
  • Within people diagnosed with autism and co-occurring intellectual disability, prevalence figures have historically been unstable, drifting from around 75% in mid-20th-century reports down to ~25% today. The drift reflects a genuine expansion of the autism concept to include people without ID, not a change in the underlying population.
  • Assessment instruments for sensory processing fall into two categories: “bottom-up” clinical observation tools (Sensory Processing Measure / SPM, Sensory Processing Scale / SPS, now Sensory Processing 3-Dimensional / SP3D) developed from practice, and “top-down” framework-based tools (the Dunn Sensory Profiles). The synthesis recommends using both approaches rather than choosing between them, and flags that most instruments have limited or no formal Dutch validation.
  • Interventions covered include Ayres Sensory Integration Therapy, Sherborne movement pedagogy, hippotherapy, material- and tool-based interventions, tactile-focused interventions, auditory training, music therapy, and broader environment-design strategies. The authors are carefully agnostic about relative effectiveness and repeatedly flag the poor evidence base for most approaches in this specific population.

Structure

The document is organised into a voorwoord, four substantive chapters, a nawoord, and a reference list. For a full chapter-by-chapter expansion, see the topic overview pages this document feeds into.

  1. ASD in combination with intellectual disability — prevalence, similarities and differences, conceptual framing (the AAIDD multidimensional model of functioning, ICD-11’s explicit separation of ASD with and without ID).
  2. Sensory processing problems in people with ASD and ID — historical sketch (Kanner 1943, Asperger 1944, Creak 1961, Ornitz & Ritvo 1968), possible mechanisms (modulation problems, filter system dysfunction), a detailed walk through each sensory system (proximity senses, distance senses, proprioception, vestibular, interoception), and the interplay between sensory experience and cognitive processes.
  3. Mapping sensory processing problems — assessment instruments and checklists. Both research instruments (SPM, SPM-P, SPS/SP3D, Dunn Sensory Profiles) and clinical checklists.
  4. Interventions for positively influencing sensory processing — the full inventory above, with strategies situated in broader daily-life context.

Relevance to the wiki

Almost every conceptual page in the wiki’s 01-science/ folder should trace back to this document, and the Prikkelverwerking glossary (NL ↔ EN) is partly derived from its terminology choices (especially the responsiviteit vs reactiviteit distinction). It is also the authoritative source for the wiki’s stance on when not to trust single studies: the authors are visibly cautious throughout, flagging where the evidence is thin and where clinical judgement has to fill in.

Limitations

The authors themselves name their main limitation at the end of chapter 2: the document is explicitly not exhaustive — they describe it as a map of what problems can occur rather than a probabilistic claim about which ones will. Three further limitations worth naming in the wiki:

  1. No formal systematic review method. The search was broad rather than PRISMA-structured. Decisions about inclusion relied on the authors’ clinical judgement about relevance. Useful for practice, harder to audit.
  2. Dutch-language grey literature is over-represented relative to what a narrower search would surface. This is appropriate given the commissioning context (a Dutch network project) but means the synthesis is not directly portable as a general review of the international literature.
  3. Older references dominate some sections. Kraijer 2004, Wing 1981, Kanner 1943 appear throughout. These are not wrong to cite, but later systematic reviews (see Sensory processing in autism and intellectual disability) update several of the empirical claims.

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