Saturday, 28 April 2012

Hidden pain: Self-injury and people with Learning Disabilities



Self-injurious behaviour (SIB) in people with learning disabilities is one of the most distressing and challenging behaviours that families, carers and the person with the SIB themselves have to cope with. In our experience, SIB is poorly understood by most medical professionals, and can take many forms, including, head banging, hair pulling, hand biting, bending fingers back, ripping off finger and toenails, and eye and genital gouging. Causes are complex and usual behavioural intervention approaches, such as rewarding good behaviour, may be ineffective. People with SIB can present big challenges to services and their families. Support workers and parents report emotions including disgust, despair, helplessness, shock, anger and hopelessness. The SIB itself may be severe – Chrissy once fractured her heel banging it on the floor and I know of other individuals who have lost their sight through SIB.

An increased risk of SIB is associated with sensory deficits, poor expressive language, autism, severe disabilities, poor mobility and specific genetic syndromes, whereby it's thought to be related to underlying brain abnormality. People across the learning disability spectrum are at a higher risk than the general population of engaging in SIB at some point in their lives, ie during times of stress, change or illness. Around 8-15% of people with learning disabilities living in hospitals self-injure and, indeed, this may be the reason for their admission. About 3-12% of children with learning disabilities and about 3% of adults, living in the community, show self-injury. (Figs taken from The Challenging Behaviour Foundation's excellent information sheet on SIB) http://www.challengingbehaviour.org.uk/cbf-resources/information-sheets/self-injurious-behaviour.html

Reasons for SIB are varied. It may simply be the only way the person has to communicate frustration or to control the environment. Physical causes, such as pain, illness and seizure activity should be ruled out where possible. SIB may be an attempt to gain sensory input due to a high pain tolerance or conversely due to sensory overload, such as head banging to block out a distressing noise. SIB may also be expressions of common autism traits such as obsessions and repetitive behaviours, or an underlying mental health issue. As with self-harm in people that don’t have a learning disability, SIB can also be due to neglect, abuse, under-stimulation and inadequacies in the environment.

Early recognition and intervention may be effective before the SIB becomes entrenched, especially where there is no identifiable biological basis for the self-injury. Seemingly harmless repetitive, stereo-typical behaviour may be a pre-cursor to SIB. Head banging that started as a form of sensory stimulation or due to earache in a young child may develop into a way of avoiding demands or expressing discomfort. Parents and teachers may unwittingly ‘shape it up’ with their responses.

Once possible causes and functions have been investigated, treatment interventions fall broadly into behavioural and medical. Physical interventions or restraint are only used as a last resort, and may cause the SIB to escalae. Research over the past two decades suggests that certain types of self-injury may be part of a tic disorder or due to neuro-chemical differences. There may be Dopamine or Seratonin imbalances, or some people with learning disabilities may have raised beta-endorphin levels which increase their pain threshold. It has always been a mystery why some people with chronic SIB don’t seem to feel pain. SIB can release the body’s natural opiates to produce an addictive ‘high’ which can reinforce the behaviour (so-called opioid excess theory). Only one type of medication has been consistently found to help in reducing this type of self-injury – Naltrexone – a medication that's also used for people without learning disabilities who have drug and alcohol addictions. Naltrexone has to be monitored closely and doesn’t work for everyone with SIB but it effectively blocks the opiates, thereby removing the usual addictive responses to self-injury.

I've mentioned before on here how Naltrexone helped Chrissy & why it had to be withdrawn. It stopped her SIB outbursts - and even mild skin-picking - for seven years. Antipsychotics have consistently made her SIB worse but it's been a struggle to get some of her previous learning disability psychiatrists to take this on board for some reason. In desperation, after a recent spate of more intense SIB cycles, I posted a video of Chrissy self-injuring on a closed 1q21.1 microdeltion group, to see if anyone else had seen anything similar in their child. From what parents have reported back so far, children with this deletion and associated challenging behaviour are more likely to show aggression to others than themselves. Although some do self-injure it seems to be a passing phase that they grow out of. One parent said that when her daughter approached her she never knew if she was going to hug or or hit her. I'm not sure which is worse - seeing your child self-injure or being afraid that they may hurt you. Chrissy has lashed out but usually inadvertently, ie if I get too close while she's in a very intense phase of the cycle. When she was eight she threw a book that hit a teacher in the mouth - she lost her front teeth.....it was quite horrific but not deliberate. Chrissy doesn't aim objects at people; she just throws randomly to express extreme emotions.

Triggers are sometimes obvious, for instance when Chrissy doesn't get her own way, but they are often impossible to identify, especially when things kick off while she's in an angelic mood doing something she loves. Particularly mystifying are intense cycles lasting days - one occurred recently soon after Chrissy went on Pregablin, a new anti-epileptic. We're not sure whether it caused another cycle or if it was just coincidence but it's now been withdrawn as Chrissy's seizure frequency increased too. During these cycles, Chrissy struggles to engage in activities she normally enjoys and is very unsettled at night as well. Yesterday she said 'I feel sick' while she was kicking off. She sometimes does this before a seizure so it's something else to flag up to her doctors. We can minimise triggers in her environment and use distractions but we can't stop these SIB episodes once they start. She seems to get stuck in them and we have to let the cycles run their course. I've explained on here about the devastating impact they have on Chrissy's life and my long search for answers. Over the years Chrissy's psychiatrists and psychologists have put different theories put forward, including autistic crisis, cyclic depression, psychosis, the 'wrong' environment. It's quite possible that her SIB has been triggered by all four at different times in her life but these theories haven't resulted in Chrissy regaining anything like the quality of life she had on Naltrexone. Medical professionals are working together to help Chrissy and I heard yesterday that a referral to a specialist in movement and tic disorders has been made. Things are moving forward.....


I am a SWAN UK (Syndromes without a Name) blogger
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10 comments:

  1. Thank you for sharing this Jane. It's fascinating reading. My son used to do headbanging, hitting himself, and deliberately crashing into hard objects and we identified the cause was almost always frustration. As his speech and language has improved he's done this less and less, and although he still has major melt-downs I no longer worry that he will injure himself. I hope things continue to move forward for Chrissie, and her quality of life is able to improve again.

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    1. Thank you - it's interesting how many children grow out of SIB. I wonder if the severity of Chrissy's learning disabilities plays a part. I always believed that when she grew older she would be able to tell us what she was thinking/feeling in their outbursts but she's never developed to that level sadly.

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  2. I started having feelings of self-injury during college. I was going through a bipolar manic phase and spiraled to the bottom several weeks later. I have struggled with this issue ever since. I agree on the part of not feeling the pain during my self-injury. I never understood why. Thank you for being willing to open up your heart. I am thankful for the information.

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    1. Thank you for your honesty about a difficult issue Ruthie, I'm always grateful to hear from someone who may be able to shed light on how Chrissy might be feeling. She's unable to express anything like that. There's no doubt that Chrissy feels pain differently to us - she has major sensory issues that aren't being adressed where she is. Glad the post helped you to understand your own self-injury better. Good luck x

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  3. Very interesting Jane. It's not something i've ever come across before. Glad things are beginning to move forward for you & Chrissy

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    1. Thanks Hayley. You too! Just read your post x

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  4. Another informative post Jane. I sincerely hope that things continue to move forward.

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  5. Thanks Anne. Another mum that read this post gave me contact details for a medical professional with a special interest in SIB so will be exploring that avenue too. They seem to be as rare as hen's teeth!

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  6. Really interesting to read Jane and I imagine watching your child self injure so extremely and not be able to do anything to stop it or to help must be devastating. I worked in the past with a severely autistic boy with SIB. At that time we used behavioural methods to address it. As part of my final year dissertation at university (with his parents permission) I catalogued his behaviour and the antecedents and consequences of it. It became apparent that his SIB served a communicative function - anger, frustration, happiness/excitement and confusion (he was non verbal) which really made us change our response to his outbursts. It was upsetting to realise that behaviour we had tried to extinguish by ignoring was actually his way of communicating.

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  7. Thanks LittleMamma. It is really hard to live with. When Chrissy goes through a bad SIB cycle I'm on a downer too. It haunts me. When she's ok my world is a brighter place too & I can get on with my life. Chrissy's had lots of input by a positive behaviour team etc., & we know some of the triggers but there are still lots of perplexing parts to these SIB episodes, especially the really intense cycles she has from time to time that last several days & occur at night.

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