Self Injurious Behaviour in Autism

1. Prevalence of Self Injurious Behaviours in Autism: Underlying Clinical and Pain Issues Implications for Behaviour Management Strategies Self Injurious Behaviour in Autism www.autismtreatmenttrust.org

2. Illustrative Video

3. Behavioural issues • Sample of 270 children

4. Types of Self-Injurious Behaviours

5. Attention Seeking Denied Request Function? Avoidance Requesting SIB Coping Pain Transition Confusion Dietary Sensory overload Health Fatigue Setting?

6. Behavioural Functional Analysis Peter Sturmey, 2001. Description of behaviour What is the behaviour? How often does the behaviour 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 prevented 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?

7. Behavioural Functional Analysis (Cont.) 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.

8. Non-Communicative Children’s Pain Checklist Challenging behaviour rated 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 hurts 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.

9. Behaviour Rating Scales Rarely SIB and Challenging Behaviours (CB) receive a great deal of attention in Autism Aberrant Behavior Checklist (Amoan et al 1985) Nisonger Child Behavior Rating Form (Aman et al 1996) Behavior Problem Inventory (Rojahn et al 1995) PDD-BI (PDD Behavior Inventory) (Cohen 2003) Overt Aggression Scale (Hellings et al 2005)

10. Case Studies

11. Child BS Age: 12 years old. Diagnosis: Autism. Communication: Non verbal/ no assisted communication. SIB: Daily– episodes lasting for up to 6 hours. Hit forehead, jaws, side of face with wrists. Development: Onset of difficulties at 18 months. Chronic constipation. Regression at temporally association with vaccination. Clinical presentation: Thin (<2nd percentile), pale complexion and dark circle under eyes. Enlarged lymph nodes. Chronic constipation. Inflammation (upper and lower GI). Gut dysbiosis. Pain.

12. Child JW Age: 9 years old. Diagnosis: Autism. Communication: Non verbal/ no assisted communication. SIB: Daily– episodes lasting for up to one hour. Hit forehead, jaws, side of face with wrists. Development: Onset of difficulties at 4 months. Kidney and liver infection at 8 months, requiring hospitalisation. Chronic constipation. Regression at 18-24 months (temporally association with vaccination). Clinical presentation: Thin (2nd percentile), pale complexion and dark circle under eyes. Enlarged lymph nodes. Chronic constipation

13. Child TG Age: 9 years old. Diagnosis: Autism. Communication: Single words for requests. SIB: Daily– episodes lasting for up to 30 min. Head banging wall and floor. Development: Onset of difficulties 2 years and 6 months. Loss of language and became socially withdrawn (cause unknown). Clinical presentation: Thin (< 2nd percentile), pale complexion and dark circle under eyes. Chronic constipation. Enterocolitis. Gut pathogens. Calprotectin <20 (normal). Gut Dysbiosis.

14. Child CL Age: 9 years old. Diagnosis: Autism. Communication: Non verbal, some Makaton signs and PECS. SIB: Daily. Head banging against wall, bites hands on knuckles and finger nails causing them to split half way. Development: Onset of difficulties 2 years and 6 months. Lost language and became socially withdrawn (cause unknown). Clinical presentation: Thin (5th percentile), pale complexion and dark circle under eyes. Chronic constipation. Abdominal bloating. Rectal prolapse not healing because of constipation. Calprotectin: 700. Daily anal bleeding. No inflammation of colon and gastric system. Gut Dysbiosis, H. pilori infection.

15. Pain Measurement Pain measurement using the Non-Communicative Children’s Pain Checklist-Postoperative Version (NCCPC-PV) for children BS, JW,TG and CL. 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.

16. TOXICOLOGICAL Methylation issues Oxidative stress IMMUNOLOGICAL Glutathione depletion Environmental allergies Heavy metal toxicity Chronic inflammation Autoimmune reactions Chronic infections False neurotransmitters Neuronal inflammation Dysregulated neurotransmitters Autonomic dysfunction NEUROLOGICAL GASTROINTESTINAL Nutritional deficits Food sensitivities Intestinal dysbiosis GI inflammation Source of Pain? Motility issues

17. Health presentation Sample of 270 children Eating Issues n=272 Frequent Infection n=267 Allergy n=270 Eczema n=271 Asthma n=269 Motor Issues n=232 Epilepsy n=257

18. Behaviour partly relates to health Self-injury Statistical association with hyperactivity and immune problems

19. Gut problems Clinically defined as: Abnormal bloating Posturing Constipation and/or diarrhoea Abnormal stools: Colour Consistency Undigested food Mucus Blood Smell Amounts Shape In terms of stool markers: Inflammation: Calprotectin Lyzosyme White blood cells Lactoferrin Immune imbalances IgA Dysbiosis Parasite Beneficial gut flora Commensal Pathogenic Yeast Short Chain Fatty acids pH Absorption-digestion

20. Gut problems Statistical association with regressive autism, hyperactivity and parental immune problems

21. Gut problems Associations with current gut problems: Pearson’s chi-square Current gut problems and regressive autism There was a significant association between those with current gutproblems and those with regressive autism χ2 (1) = 5.619, p = .018. This is reflected by the odds ratio whereby those with current gutproblems were 1.93 times more likely to have regression than those without. Current gut problems and hyperactivity There was a significant association between those with current gutproblems and those with hyperactivity χ2 (1) = 9.665, p = .002. This is reflected by the odds ratio whereby those with current gutproblems were 2.33 times more likely to have hyperactivity than those without. Current gut problems and crying There was a significant association between those with current gutproblems and those with crying problems χ2 (1) = 5.075, p = .024. This is reflected by the odds ratio whereby those with current gutproblems were 1.80 times more likely to have crying problems than those without. Current gut problems and sleep problems There was a significant association between those with current gutproblems and those with sleep problems χ2 (1) = 6.649, p = .010. This is reflected by the odds ratio whereby those with cryingproblems were 1.96 times more likely to have sleep problems than those without.

22. Immune problems

23. Is SIB associated with any biochemical marker? e.g. Oxydative stress marker (Isoprostane) and Cell-mediated immune marker (neopterine)? Self Injurious Behaviour Self Injurious Behaviour No Yes No Yes

24. Immune markers 1 Self Injurious Behaviour Self Injurious Behaviour No Yes No Yes

25. Immune markers 2 Self Injurious Behaviour Self Injurious Behaviour No Yes No Yes

26. Intervention Individualised intervention based on individuals needs

27. Key elements Remove Stressors GF/CF –SCD- Sugar etc. Allergens Toxins Infection Optimal metabolism & physiology Nutrition Digestion Immune system Liver & kidney functions Hormonal Inflammation LDN Nicotine Patch Prednisolone and other steroidal anti-inflammatory agents

28. Conclusion I • The case studies presented suggest that SIB, characterised by a sudden occurrence of behaviour and absence of identifiable triggers likely correlates with pain. • Clinical investigations of these children combined with a functional behavioural analysis indicate that inflammatory gastro-intestinal dysregulations could be related to their pain and self injurious behaviour.

29. Conclusion II • Larger group analysis suggest that no particular biomedical marker is specifically associated with SIB, however, immune dysfunction appears to be more prevalent in this sub-group of ASD children. • Successful interventions require to go beyond the basic nutritional and dietary interventions and should include an anti-inflammatory element. • The source of inflammation should ultimately be identified for a sustained recovery from SIB and pain.

30. Conclusion III • Any health deterioration can potentially precipitate the reoccurrence of SIB, even if there is no direct impact on the GI system in children with known GI inflammation and SIB. • Teaching alternative modes of communication is essential to replace SIB in children who have learned to use such behaviour to communicate their needs.