Self-injurious and challenging behaviours in autism: A pilot study of remedial therapy.

Duration of project: 20 months- Submitted Chief Scientist Office- July 09

Project description: Challenging and self-injurious behaviours are commonly reported in children with autism. A recent survey carried out at the Autism Treatment Trust revealed that 36 of 60 (60%) children displayed overt challenging behaviour, while SI behaviour was recorded in 31 (51.7%). Anecdotal evidence suggests that challenging/SI behaviour was correlated with pain associated with inflammatory immuno-gastrointestinal (I-GI) dysfunction and to be alleviated by treatment of the GI tract and inflammation. The pilot study proposed addresses the feasibility of an intervention consisting of a dietary, nutritional and pharmacological modification designed to alleviate I-GI imbalances modify the incidence and severity of challenging and SI behaviours. The trial will be conducted over a period of 3 months following gradual implementation (also 3 months) in a group of 20 autistic children with confirmed challenging/SI behaviours.

Status: This project was submitted to the Chief Scientist Office but it was turned down last November. We feel the project remains important and should be rewritten to be submitted elsewhere.

ATT Pilot Studies

Prevalence and Functional Analysis of Self Injurious
Behaviours in Autism: Underlying Clinical and Pain
Issues - Implications for Behaviour Management Strategies

Dr. Lorene Amet, School of Education, Birmingham University, UK & Autism Treatment Trust, Edinburgh UK. This e-mail address is being protected from spambots. You need JavaScript enabled to view it .
Dr. Seth Racey, School of Applied Sciences, Northumbria University Newcastle Upon Tyne. UK.
Dr Gordon Bell, Nutrition Group, University of Stirling, Stirling FK9 4LA, UK.

Introduction:

Challenging behaviour (CB) constitutes the prime reason for temporary and permanent exclusion of individuals with an Autism Spectrum Disorder (ASD). It causes major barriers to effective education and social development. Importantly, CB constitutes one of the most obvious hallmarks of a developmental difficulty, often a first sign of concern raised by parents and a red flag for autism. Currently there are very few reports that address the issues of prevalence of CB in autism.

Aims 1:

To investigate the prevalence and nature of challenging and self injurious behaviours (SIB) in ASD.

Figure 1: Range of behaviours displayed in a group of 60 children with ASD and relatedbehavioural disorders.

Figure 2: Range of self injurious behaviours (SIB) seen in a cohort of 31 (51%) children with autism. The most frequently observed behaviour was injury to the head, by head banging, punching, hitting, stabbing and poking. This was followed by injuries to the hands and body as a whole.

Figure 3: Level of communication displayed by a group of 60 children with ASD and related behavioural disorders and in children displaying SIB versus children not displaying any SIB. Children with autism and SIB tend to have reduced communication skills compared to children with autism not displaying any SIB.

Figure 4: Clinical presentation seen in the cohort of 60 children with autism in relation to the presence and absence or SIB.
A- Incidence data reported in the three groups studied for digestive, sleep, immune abnormalities.
B. Range of digestive system dysfunction reported: bloated abdomen, abnormal body posturing (pressure applied to lower abdomen through unusual body posturing and abnormal bowel movements- here a case of loose lightly coloured stools is shown, constipationwas also commonly reported in these children).
C. Type of immune abnormalities encountered in the entire group.

Results I:

It was found that 60% of the group of children sampled displayed CB (aggression to others and property, sudden outbursts of behaviour) and 51% displayed SIB. The SIBs that were reported included hand biting, hitting arms, hitting face, head banging, scratching, poking and stabbing, banging chest, throwing self on floor/ walls and pulling hair. The sub-population of ASD children with SIB tends to have lower expressive language skills and higher incidence of gastro-intestinal problems.

Aims 2:

Three case studies were conducted on some of these children presenting with the most severe chronic SIB. A behavioural functional analysis and assessment of pain based on the Non-Communicative Children’s Pain Checklist-Postoperative Version (NCCPC-PV) were carried out. Medical investigation by enteroscopy and biopsy were conducted in hospital environment for 2 of these children. Laboratory testing was conducted in NHS and private laboratories to survey possible immune and inflammatory abnormalities and base line metabolic and neurotransmitter levels.

Behavioural Functional Analysis

• Description of behaviour
• What is the behaviour?
• How often does the behaviour does occur in a day? week?
• How long does it last for?
• Is the behaviour more prevalent at certain time, on certain days/period?
• Does the behaviour seem to occur “out of the blue”?
• List the situations preceding 3 instances of behaviour?
• Describe how you respond to the behaviour?
• What does the child do after the behaviour occur?
• Environment Related Factors
• Does the behaviour occur more often in certain environment?
• Does the behaviour occur more often when the environment is noisy?
• Does the behaviour occur more often when the room is warm?
• Does the behaviour occur more often in a crowed place?
• Does the behaviour occur more often when the child is asked to participate to an activity or respond to a demand?
• Does the behaviour occur after the child has been told no or is prevent to do something of his own choosing.
• Is the behaviour related to changes of activity or environment?
• Does the behaviour occur when the child is on his own in room without anybody present?
• Biological factors
• Does the behaviour occur more often when the individual is in the same environment/position for an extended period of time?
• Does the behaviour occur more often when the individual has a cold?
• Does the behaviour occur more often when the individual has gut problems?
• Could the behaviour be related to pain or discomfort (abdominal-, ear-, tooth-, head-ache)
• Fatigue-related factors
• Does the behaviour occur more towards the end of the day?
• Does the behaviour occur more towards the end of a long, busy day, or following a prolonged activity?
• Does the individual show signs of being tired immediately before the occurrence of the behaviour?
• Sleep-related factors
• Is the occurrence of the behaviour related, in any way, to a change of sleep habits?
• Does the behaviour occur more often immediately after waking up?
• Dietary-related factors
• Could the behaviour be related to a specific food allergy or intolerance?
• Could the behaviour be related to sugar intake?
• Is the behaviour more likely to occur after meals or before meals?
• Is the behaviour related to a dietary change?
• Is the behaviour related to change in appetite change?
• Alertness-related factor
• Does the individual appear vague, puzzled, confused or baffled just prior, during or after a change (increase/decrease) of behaviour?
• Communication-related factors
• Does the behaviour occur following the individual’s inability to communicate a need?
• Is the behaviour related to misunderstanding requests or instructions by the caregivers?
• Is the behaviour related to the caregiver’s misunderstanding of the individual request?
• Modified Functional Analysis Check List adapted from Peter Sturmey, 2001.

Non-Communicative Children’s Pain Checklist

Please rate your child’s challenging behaviour (* characterised by sudden “out of the blue” onset) as either not at all= 0, just a little = 1, fairly often = 2, very often = 3.

Vocal Moaning, whining, whimpering (fairly soft) Crying (moderately loud) Screaming or yelling (very loud) A specific sound or vocalization for pain Social Not cooperating, cranky, irritable, unhappy Less interaction, withdrawn Seeks comfort or physical closeness Difficult to distract, not able to satisfy or pacify Facial Furrow brow Change in eyes, including: squinting, eyes opened wide, eyes frown Turn down of mouth, not smiling Lips pucker up, tight, pout, or quiver Clenches or grinds teeth, chews, thrusts tongue out Activity Not moving, less active, quiet Jumping around, agitated, fidgety Body and limbs Floppy Stiff, spastic, tense, rigid Gesture to or touches part of body that hurts Protects, favours, or guards part of body that hurts Flinches or moves away part of body that huts Moves or position self in specific way to show pain Physiological signs Shivering Change of colour, pallor Sweating, perspiring Tears Sharp intake of breath, gasping Breath holding Adapted from Breau et al 2002.

Table 1: Pain measurement using the Non-Communicative Children’s Pain Checklist-Postoperative Version (NCCPC-PV) for children 1,2,3. Total scores were recorded in each behaviour areas. The behaviours were rated as either not at all= 0, just a little = 1, fairly often = 2, very often = 3.

Figure 5: Function of SIB and settings contributing to its occurrence for children 1,2,3.

Results II:

The case studies presented here suggest that SIB, characterised by a sudden occurrence with absence of identifiable triggers, peaking in frequency with co-occurrence of pain-related behaviour (facial, vocal, body posturing and movements) and of intensity that is amendable by pain killers, likely correlate with pain. Clinical investigations of these three children combined with a functional behavioural analysis indicate that inflammatory gastro-intestinal disregulations could be related to their pain and self injurious behaviour.

Aims 3:

To diminish the occurrence of SIB in children 1,2,3 by providing a biomedical treatment protocol focusing on alleviating their gastro-intestinal dysfunction.

Treatment

Outcomes 9 months after initial assessment of SIB

Conclusion:

These preliminary findings bear important implications for the management of SIB in autism. It is paramount to recognise that some of the most challenging behaviours seen in autism can be caused by undiagnosed and untreated underlying medical and physiological deregulations.