If you were not at the RCOT Conference, you have missed the opportunity to hear Alexis speak with powerful words about her experience as an autistic person being detained under the Mental Health Act, her escape to Lagos and her return to the UK to tell her story and advocate for improved support and care for autistic people within the mental health system.
It’s not too late to register for the RCOT Annual Conference, and with conference materials available for the next 6 months, the £99 registration fee, with a chance to hear Alexis’ story and her clear understanding of what OT can offer to the healthcare system, it’s great value for money CPD.
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.
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?”
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:
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:
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”.
These guidelines were first published in May 2018 following several meetings between the PANS Physicians’ Network UK (PPNUK) and the Charity PANS PANDAS UK. Based on the US treatment guidelines originally written by the US PANDAS Physicians’ Network, these guidelines have been modified to adapt to UK medical practice, GP’s are strongly encouraged to start treatment and investigations early as early treatment is likely to improve the long term outcome of these patients.
“There is gradually accumulating evidence that there are some children who experience sudden onset of a neuropsychiatric disorder (usually obsessive-compulsive disorder (OCD) or tics) following a Group A beta-haemolytic streptococcal infection (GABHS). The acronym PANDAS was first cited in 1998 to describe this group of patients.However, neurological sequelae of streptococcal infection have been well recognised (eg, Sydenham’s chorea described by William Osler in 1894).
Doubt remains about the aetiology of the condition and whether it can be considered an independent disease entity.
More recently the term PANS (paediatric acute-onset neuropsychiatric syndrome) has been suggested, as it captures both the sudden onset and uncertainty about the aetiology.”
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.
PANS was introduced in 2012 by Dr. Susan Swedo in the paper From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).
The PANS Criteria
PANS is a clinical diagnosis. The following is the “working criteria” as listed Dr. Swedo’s paper on PANS:
Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.
Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories: Anxiety Emotional lability and/or depression, Irritability, aggression and/or severely oppositional behaviors, Behavioral (developmental) regression, Deterioration in school performance, Sensory or motor abnormalities, Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency
Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham’s chorea, systemic lupus erythematosus, Tourette disorder or others.
The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.
The acute onset means a Y-BOCS (Yale Brown Obsessive-Compulsive Scale) score of >20 and or a Chronic Tic Disorder YGTSS (Yale Global Tic Severity Scale) often with multiple tics. Below is the symptom criteria for PANDAS. Additional symptoms may be present.
A clinical diagnosis of PANDAS is defined by the following criteria:
Presence of significant obsessions, compulsions, and/or tics
Abrupt onset of symptoms or a relapsing-remitting course of symptom severity
Interestingly no one asked for evidence of Sydenham’s Chorea, which has been well documented for much longer. Perhaps because it has a very physical presence that is clinically easier to diagnose, especially as the condition progresses to full-blown ataxic movement patterns, as well as the neuropsychiatric symptoms.
In the 1930s, if a doctor saw a patient with chorea, especially if the patient were a child or young woman, it was a reasonable assumption that the diagnosis was Sydenham’s chorea. In western societies today, such a presentation is unlikely to be Sydenham’s chorea and considerable thought must be given to the differential diagnosis. The time course of the chorea is useful diagnostically: most previously healthy children with an acute or subacute chorea have an autoimmune aetiology. Additional causes of childhood choreas include:
Other autoimmune causes, such as seen in systemic lupus erythematosus.
Athetoid cerebral palsy.
Drug-induced causes – metoclopramide, phenothiazines and haloperidol are the most important.
Primary and metastatic brain tumours affecting the basal ganglia.
Metabolic – bilirubin encephalopathy and toxins, especially carbon monoxide, manganese and organophosphate poisoning.
*Genetic Causes can include:
Benign hereditary chorea starts in childhood and is a non-progressive chorea. Inheritance is usually autosomal dominant, although rare cases of autosomal-recessive and X-linked inheritance have been reported.
Wilson’s disease is an autosomal-recessive disorder of copper metabolism.
Ataxia telangiectasia and other related conditions.
Huntington’s disease presents most often between the ages of 35 years and 45 years but it can be younger, especially if inherited from the paternal line. There is usually but not invariably, a family history. A juvenile form exists that should be seen as a variation of the normal form and not a distinct entity.
Our vestibular system is amazing. So many people don’t even know what they do until it isn’t working – like when someone has vertigo, when even getting out of bed becomes impossible.
Most people have no idea how important it is and how much it influences everyday life.
The vestibular system is located in the inner ear, near the cochlea (the hearing organ of the ear). It tells us about how our head is moving through space. It can tell us about exactly how our head moves, detecting movement in any plane. It tells us if we are still, speeding up or slowing down, .and if we are moving in circular movements of straighter lines.
The vestibular system does and detects gravity. It tells us which way is up and which ways is down. The information from the vestibular system is used by the brain to inform all kinds of things, from helps us balance, supporting our and helping us keep images we look at stable, a skill we need for reading and driving! When it doesn’t work well we can have subtle problems or some that are more impact; making it hard to stand or sit up straight, know when we are or are not moving, keep objects in the distance still, even if we are driving, moving or jumping about.
You can read this great explanation of the vestibular system and how it works to help; at OT toolbox.
Check out this amazing video made by Astronaut Tim Peake during his time on the international space station, where he experiments with how the vestibular system is affected when in microgravity.
Tim’s brain has adapted to his environment so that the messages from his vestibular system no longer make him feel dizzy or sick.