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PANDAS and PANS Sensory Integration and Processing Challenges

a displeased girl screaming in anger

PANDAS and PANS Sensory Integration and Processing Difficulties

Sensory Systems:
Vestibular processing deficits, often low PRN
Poor postural control especially antigravity extension
Can slouch, slump – extension against gravity is tricky and tiring
Likes to move and not stop/fidgeting
Can have low levels of alertness when not moving
Scared of the dark without visual input to support spatial understanding
Altered spatial awareness
Poor grading of force
May appear ‘low toned’ – but normal Beighton Scale
Poor self-awareness – spatial; position in space and body awareness
ARFID and picky eating | often poor tactile registration and poor modulation
Super sensitive to some tastes
Altered temperature perception
Delayed cues re ill, nauseous, hungry, full or needing toilet
Hyper-responsivity to some textures and light touch eg certain fabrics/textures
May dislike light touch; skin, hair, tooth and nail care can be tricky
Dislike being touched or held when not on own terms
Slow or under-responsivity to pain,
Hyper-responsivity in far senses; smell, vision and hearing

The dyspraxic patterns seen can include;
Often bumping into things and people
Difficulty playing with manipulating tools and toys
Difficulty learning new/novel movement/motor skills
Fine motor co-ordination difficulties e.g., handwriting, bilateral co-ordination, poor tool use
Speech praxis difficulties include stutter, slurred words, poor pronunciation and timing
Ideation, planning and execution can all be affected.

Emotion Regulation
Rage
Anger
Irritability
Poor frustration tolerance
Difficulties with co and self-regulation
Poor self-awareness – emotional lability is common
Tearful one moment, raging the next 0-100 in 3 seconds

Executive Function
Poor processing speed
Multi-tasking is hard
Poor timing and sequencing
Poor concentration and focus
Slow to perform tasks
? observed difficulties with language processing
? observed difficulties with more complex and abstract problem solving that is age-appropriate

Fatigues easily and needs lots of reset time
May go ‘off legs’
Looks like have regressed

May need much parental encouragement and support
Lose resilience to trying new things
Low self-esteem

Older children
Self-loathing and disgust at self
Extreme fear and losing control of agency over the world
Awareness of personality change and burden on parents and siblings

[list developed by Kath Smith OT 2014 – 2021]

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Research Update: Moving Toward Understanding Autism: Visual-Motor Integration, Imitation, and Social Skill Development

Despite high phenotypic heterogeneity in ASD, a meaningful subpopulation of children with ASD (∼90%) show significant general motor impairment. More focused studies on the nature of motor impairment in ASD reveal that children with ASD are particularly impaired on tasks such as ball catching and motor imitation that require efficient visual-motor integration (VMI).

Lidstone et al 2021.

Read more here : https://www.sciencedirect.com/science/article/abs/pii/S0887899421001399

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The importance of a comprehensive assessment

Thank you to the families who gave consent and our secret blogger OT for this contribution.

“A little while ago, two mums approached me and both asked about assessments for their children. Both were young adults, academically highly able and struggling with their self-organisation and motor skills.

Both young people consented to an assessment and completed, through self-report, the Adult/ Adolescent Sensory History (AASH) questionnaire. They were also assessed with the Sensory Integration and Praxis Test (SIPT). The SIPT is a standardised assessment with normative data for ages 4 through 8 years, 11 months. On this particular assessment tool, sensory integration and processing skills scores plateau at around this age, though the test is still informative for people beyond this age, who should have achieved.

The young lady assessed has a diagnosis of social anxiety and has low confidence, while the young man is quite a confident character. She has a history of bumps, trips and spills, and will tell anecdotes of these with great humour; while he prefers to focus on what he does well in conversation.

I love the AASH, the reports it gives highlight each sensory system, differentiate between discrimination and modulation difficulties and addresses motor planning, sequencing and social/ emotional aspects of sensory integration and processing needs.

It uses clear, non-patronising language and activities appropriate to adults and adolescents. It shows up really clearly a person’s (or their caregiver’s as necessary) perception of their sensory integration and processing needs and how these affect their day to day life. In this instance, the young lady highlighted many sensory processing needs.

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The young man reported almost no difficulties, his only score in the primary sensory systems section was mild proprioceptive difficulties. When questioned as to the accuracy of his answers, he tended to reply “well, nobody likes that, do they?”

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Having scored the AASH checklists, I completed a SIPT with each person. The SIPT is a battery of 17 tests which assess a person’s sensory integration and processing including perceptual-motor skills through tasks with standardised administration and normative data against which to compare an individuals test results. Guess which person showed more significant difficulties in the direct assessment? 

On the SIPT assessment scores between -1 and +1 standard deviation are considered typical, above +1 are strengths and scores below -1 are of clinical significance and require support and will benefit from direct intervention.

The exception to this being Post Rotatory Nystagmus in which a low (below -1) or high score (above +1) indicates significant difficulty inhibiting response to vestibular information and often relates to a low Standing and Walking Balance score.

Here are the young lady’s SIPT results:

 

 

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Definite movement, balance and body awareness difficulties but also some areas of significant strength, particularly around her visual skills and imitation, which she uses to compensate for her body awareness difficulties.

Here’s the young man’s chart:

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Strong visual skills, compensating for significant challenges in the other areas.

This experience taught me so much. From the AASH scores, I was expecting the young lady to have much more problems in the SIPT than the young man, their conversation about their lifestyles confirmed this expectation. Still, then the assessment showed so clearly how much of that was related to confidence.

An evaluation based solely on checklists is not enough. It tells you what a person perceives to be their difficulties, guides the direction of evaluation and adds experiential evidence to the overall assessment.

A good questionnaire is evidence-based and norm-referenced, but it always needs to be triangulated with direct observation and where possible structured and standardised assessment. These tools can tell you so much about the respondent’s confidence and resilience and what they find easy or difficult in day to day life. But I have learned it is a mistake to rely upon one alone when assessing somebody’s sensory integration and processing skills and needs”.

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Research for Practice: Sensory Integration and Dyslexia.


Ayres’ published her research findings, making a case for emerging patterns of sensory integration dysfunction including;   

  • developmental dyspraxia – this pattern linking motor planning difficulties with deficits in tactile perception
  • difficulties with integration of both sides of the body; poor right-left discrimination, difficulties crossing the midline, and  reduced bilateral motor coordination – impacting on posture and postural control, thought to related difficulties processing vestibular input 
  • visual perception, form and space perception deficits impacting on visual-motor functions
  • difficulties with visual figure-ground discrimination
  • deficits in auditory and language functions.
  • tactile defensiveness and related sensory reactivity difficulties impacting negatively on attention 

A key feature of Ayres’ Sensory Integration is the adaptive response;  “an adaptive response is a purposeful, goal-directed response to a sensory experience … play consists of a series of adaptive responses that make the sensory integration happen. In turn, as sensory integration develops, better organization and more complex skills are possible” Ayres 2005.

In 2013, Viana et al reported that children with dyslexia show poor performance and variability while relating visual and somatosensory information. Children with dyslexia showed less coherent and more variable body sway;  suggesting difficulties in multisensory integration from sensory cues coming from multiple sources.

 

man in brown jacket holding a book

Studies with adults and children found that there is reduced neurophysiological adaptation in adults and children with dyslexia. In 2016, Perrachione et al published research suggesting that people with dyslexia are likely to have differences in sensory integration and processing, noting significantly reduced adaptation to speech from a consistent voice and less adaptation to the repetition of words, objects, and faces. They provide evidence to support the hypothesis that reading skills in dyslexia are related to the degree of neural adaptation.

In 2017 Wandel and Le confirmed the importance of the effective processing of multiple sensory inputs, including successful sensory integration for competent reading. 

“Successful reading involves the ability to efficiently integrate visual signals with the sounds of speech and the language system; thus, diagnosing the reading circuitry requires testing the cortical and white matter regions that carry reading information from the visual, auditory, and language systems. Reading impairment can result from problems within neural circuits that are used for multiple purposes, not uniquely reading (Rayner et al., 2012, Seidenberg, 2017). Hence, we advocate assessing the circuitry broadly, not just portions that are highly specialized for reading.”

In clinical practice, some children with sensory integration difficulties benefit more from the use of coloured overlays. Research from Kriss and Evans (2005) suggests that 

“Children with dyslexia seem to benefit more from coloured overlays than non‐dyslexic children. MIS and dyslexia are separate entities and are detected and treated in different ways. If a child has both problems then they are likely to be markedly disadvantaged and they should receive prompt treatments appropriate to the two conditions. It is recommended that education professionals as well as eye‐care professionals are alert to the symptoms of MIS and that children are screened for this condition, as well as for other visual anomalies.”

Read the full article: The relationship between dyslexia and Meares‐Irlen Syndrome

Read more here:

Dyslexia link to eye spots confusing brain say scientists.

Dyslexia and Sensory Processing, is there a link?

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Research update: Forest design for mental health promotion—Using perceived sensory dimensions to elicit restorative responses

Forest design for mental health promotion—Using perceived sensory dimensions to elicit restorative responses, research into the qualities of the natural environment which promote restoration

forest design for mental health promotion - research update

download full article – open access pdf here  

 

gray bridge and trees