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Self Injurious Behaviour and Autism

Teenager with autism sat on some stairs

Self injurious behaviour is any form of aggression that is directed by an individual against themselves which results in physical damage. That damage may include bruising, lacerations, bleeding, bone fractures and breakages, and other tissue damage.

Self injurious behaviour is very common in people on the autism spectrum, especially if they also have learning disabilities. Sometimes the self injurious behaviour is transitory and short in duration, lasting only days or weeks, while at other times it can persist for months or years.

There are risk markers associated with some people on the autism spectrum which make it more likely that they will self injure. These include internal markers, such as specific genetic syndromes or painful medical conditions; interpersonal markers, such as self injury becoming a learnt behaviour; and external markers, such as a lack of control over their living environment. In practice an individual on the autism spectrum may self injure for a range of different but inter-related reasons.

Self injurious behaviours can cause all sorts of problems for people on the autism spectrum beyond the immediate damage to a specific part of the body.  It can cause damage to other parts of the body, such as the brain, and even lead to death.  Self injurious behaviour can also result in people being further restricted in what they can do and being further excluded from society.  

There are a number of interventions (treatments, services and other forms of support) commonly used to reduce self injurious behaviours in people on the autism spectrum. These include psychological approaches (such as changing the way you ask someone to do something) medications (such as antipsychotics), and other approaches (such as physical exercise). We believe that treating the person with respect, listening to what they say and giving them choices over their lives are also important.

There is very little high quality research evidence on the effectiveness of most interventions for people on the autism spectrum, although this does not necessarily mean that they do not work. 

The National Institute for Health and Care Excellence (NICE) and the Social Care Institute for Excellence (SCIE) have developed guidelines on dealing with challenging behaviours – which includes self injurious behaviour.  These guidelines stress the importance of developing a personalised behaviour support plan based on a functional assessment of the challenging behaviours in each individual. 

Further research is needed to examine self injurious behaviours in people on the autism spectrum. There is particular need for studies which

  • identify the factors that may cause self injurious behaviour and specific forms of self injurious behaviours in specific groups on the autism spectrum (age, gender, diagnosis, co morbid genetic condition, IQ etc)
  • Identify which groups of people on the autism spectrum with self injurious behaviour might benefit most from which interventions
  • involve people on the autism spectrum to review the causes, efficacy and ethical basis of interventions in this area including individuals who may be non-verbal  

Key Features

It is important to explain what we mean by the term self injurious behaviour (SIB) and how this differs from the similar but different term “self harm”.

This is difficult because different people seem to use the same terms to mean different things and there is an overlap between the practices found in self injury and in self harm. For example

  • Murphy and Wilson (1985) defined self injurious behaviour as “Any behaviour, initiated by the individual, which directly results in physical harm to that individual. Physical harm (includes) bruising, lacerations, bleeding, bone fractures and breakages, and other tissue damage.” *
  • The Self injury Support website, accessed on 1 February 2016, stated that “Self-injury can be many things that people do to themselves in a deliberate and often hidden way like cutting, burning, overdosing, scratching, biting, hair pulling and breaking bones.”
  • The NHS Choices website accessed on 1 February 2016, stated that “Self-harm is when somebody intentionally damages or injures their body. It's usually a way of coping with or expressing overwhelming emotional distress.”

In practice, self harm is more likely to be intentional and is more likely to involve practices such as cutting or overdosing.  Self injury, on the other hand, is less likely to be intentional and is more likely to involve practices such as head banging or biting oneself. Self injurious behaviour is also more likely to occur in people on the autism spectrum who also have a learning disability.

Of course, some people on the autism spectrum may self harm, some may self injure and some may do both.  However we will be concentrating on self injurious behaviour.

There are some specific types of self injurious behaviours which are commonly found in people on the autism spectrum. These include:

  • head banging
  • hand or arm biting
  • hair, teeth and fingernail pulling
  • eye gouging or poking
  • face or head slapping or punching
  • skin picking, scratching or pinching
  • forceful head shaking
  • dislocation of joints
  • pica (persistent eating of non-nutritive substances)

* It is worth noting that some researchers (such as Oliver & Richards, 2015) have suggested that some forms of SIB (such as head banging) may not result in obvious physical damage but may result in physical changes to brain anatomy.

Personal Accounts

We have yet to identify any personal accounts of self injurious behaviour in people on the autism spectrum. However, Heslop and MacCauley (2009) undertook a study of self harm /self injury in people with learning disabilities for the Bristol Crisis Service for Women. This qualitative study was based on interviews with a small number of people with learning disabilities and parents/carers, including three people on the autism spectrum. The findings should therefore be treated with caution. However this study found that people with learning disabilities self injure/self harm if

  • they feel they are not listened to 
  • they have been told off
  • they have little or no choice about things
  • they have been bullied 
  • they are involved in arguments, or hear other people arguing 
  • they are feeling unwell
  • they have memories of a bereavement
  • they have memories of abuse.

Statistics

Self injurious behaviour is a very common problem in people on the autism spectrum. For example, according to Minshawi et al (2014),

“To begin with, while SIB is quite common in individuals with ASD, it is not endemic only to this population; however, those with ASD appear to be at an increased risk for engaging in SIB over and beyond that of other populations. Researchers looking at lifetime prevalence in those with ASD suggest that approximately 50% engage in some form of SIB, even if just at one specific period of their life span. Point prevalence estimates indicate that SIB affects upwards of 25% of persons with ASD when surveyed at a distinct time point.

Self injurious behaviours are even more common in people on the autism spectrum with additional issues, such as learning disabilities. For example, according to Oliver and Richards (2015)

“A number of recent studies report an association between ASD with associated intellectual disability and self-injury with prevalence estimates ranging 33%–71%. There is growing evidence that the prevalence of self-injury within ASD is higher than might be expected when degree of intellectual disability is controlled for. A meta-analysis of prevalence studies has shown that those with ASD are approximately six times more likely than those who do not have the diagnosis to show self-injury. The association between degree of intellectual disability and prevalence seen in intellectual disability is evident in ASD (although the samples of those with intellectual disability are likely to include people with ASD). “

Sometimes self injurious behaviour is transitory and short in duration, lasting only days or weeks, while at other times it can persist for months or years. For example, according to Minshawi et al (2014)

“… SIB in those with ASD and other developmental disabilities is considered to be a pervasive and chronic problem. The general long-term course of SIB suggests that the behavior first manifests in childhood and progresses into adolescence with a corresponding increase in prevalence and persistence well into adulthood. Taylor et al found that in a cohort study of 49 adults diagnosed with ID, many with comorbid ASD and SIB, 84% continued to exhibit SIB 20 years later (ie, as part of a longitudinal follow-up study on SIB persistence), with no significant changes in topography (ie, type of SIB) or severity."

Causes

It can be difficult to be sure why an individual self injures although, in practice, that behaviour may arise from, and then be maintained (kept going), by a range of different factors.

Some people on the autism spectrum may be more at risk of self injury than other people.  However, the fact that one or more risk markers are present does not necessarily mean that a specific person will self injure, it just makes it more likely.

Internal risk markers

Internal risk markers are those to do with the person themselves, irrespective of what is going on in their current environment, or the people with whom they are interacting. They include

  • Severity of autism, including core features such as restricted and repetitive behaviours and difficulties with social communication and social interaction
  • Diagnosis of a learning disability and the severity of that learning disability
  • Specific genetic conditions, such as Lesch–Nyhan syndrome, fragile X syndrome and Prader–Willi syndrome
  • Physiological problems, such as difficulties with sensory processing and arousal/motor control (the physiological activation of the body)
  • Medical problems, such as migraine (severe headache), otitis media (inflammatory disease of the ear) and reflux (heartburn)
  • Mental health problems, such as anxiety and depression
  • Irregularities in neurotransmitters (brain chemicals), such as dopamine, glutamate and endorphins
  • An existing history of self-injury or the presence of other challenging behaviours, such as hyperactivity and impulsivity

Interpersonal risk markers

Interpersonal risk markers are those involving relationships between two or more people. They include

  • Learnt behaviour, where the person injures themselves in response to the reactions of other people around them. For example, other people may give them desirable items such as snacks in order to stop them injuring themselves. However, over time this may actually have the opposite effect, causing the person to injure themselves in order to get those desirable items. 
  • Inappropriate behaviour by other people. For example, other people may not listen to what they are trying to say, they may tell them off or shout at them, or they may treat them like children
  • Deliberate mistreatment by other people. For example, other people may be bullying or abusing them (as happened at the residential care home, Winterbourne View).

External risk markers

External risk markers are those in which the person is not central. They involve what is going on around the person but the person generally has little or no control over them. They include

  • Having a lack of control within their living environment. For example, they may have little or no choice about where they live, who they live with, and who supports them; they may have no control over what goes on in their home; they may have no control over some of the ‘systems’ they have to cope with
  • Use of inappropriate interventions.  For example, some medications may increase self injurious behaviours in some people on the autism spectrum.

Effects

Self injurious behaviours can cause all sorts of problems for people on the autism spectrum, their families and carers, and society as a whole. For example, according to Minshawi et al (2014),

“Furthermore, the act of engaging in SIB carries significant health risks, including lacerations, fractures, recurrent infections, physical malformations, detached retinas/blindness, and in extreme cases death. Negative consequences for engaging in SIB extend beyond their immediate physical impact and may include restricted educational and vocational opportunities, increased social isolation, limited access to community-based activities, costly medical and residential care, and of course restrictive treatment practices (eg, protective equipment, physical holds, seclusion/time-out, loss of personal property). Other problem behaviors are also noted to coexist, meaning that a person who engages in one act of SIB is more likely to engage in aggressive behavior, disruptive/destructive behavior, or other forms of self-injury.”

It is also important to understand that self injurious behaviours in people on the autism spectrum can be very distressing for family carers and service providers.

Interventions

There are numerous interventions (treatments, services and other forms of support) designed to prevent or reduce self injurious behaviours in people on the autism spectrum. Most interventions are

  • the same as those designed to help people on the autism spectrum deal with other challenging behaviours
  • the same as those designed to help other people deal with self injurious behaviours

These interventions fall into three main categories: psychological techniques, medications and other approaches. In practice, these approaches may overlap. For example, a multidisciplinary team may suggest the use of medications or physical exercise alongside a behavioural support programme.

We believe that, whichever interventions are used, it is important to treat the person with respect, listen to what they say and give them choices over their lives. We also believe that any intervention should follow the principles established by Fleming, Hurley and the Goth (2015).

Functional assessment

Most researchers and practitioners believe it is essential to identify the specific factors that may be causing an individual to self injure before deciding the most appropriate intervention to use. This is normally done using a functional assessment, which is described by Minshawi et al (2014).

“Prior to the implementation of any intervention for SIB, an appro­priate evaluation of SIB should include a combination of a thorough interview with the individual and/or caregivers, indirect assessments, behavioral observation, pre-treatment objective data collection (eg, behavior logs, scatterplots, event or duration recording), a medical evaluation, and a [functional behaviour assessment]. Being able to identify and thoroughly assess the occurrence and impact of a person’s SIB on their, and others’ quality of life, as well as identifying those specific situations or events which trigger and contribute to the persistence of the individual’s problem behavior is currently the accepted method to increase more person-centered treatment plan­ning and progress monitoring in lieu of more reactive, punitive procedures.”

Psychological approaches

There are a number of psychological approaches sometimes used to prevent or reduce self injurious behaviours in people on the autism spectrum. Many of these approaches use behavioural techniques based on the principles of applied behaviour analysis and may be incorporated within a behavioural support plan. They include

  • providing a more effective way for the person to tell you what they want. For example, you could teach the person to use picture cards, sign language, or a voice output communication aid
  • providing more structure and routine. For example, you could build a range of activities into the person’s day to minimise boredom and reduce opportunities for self injury. You could also use a visual schedule to show them what they are expected to do and when
  • for example, changing the way you ask the person to do things. For example, you could make sure you don’t ask the person to do too many difficult things all at once and give them regular breaks
  • letting the person have the thing that they want, such as a snack or toy, but only if they behave in an alternative, more desirable way instead of injuring themselves
  • providing more attention to the person when they are not injuring themselves, in cases where this attention will encourage the person to stop the self injurious behaviour – please see note 1
  • providing less attention to the person in cases where the self injurious behaviour is encouraged by attention from other people – please see note 2
  • use of response reduction procedures. For example, time-out (placing the person away from other people for a short time) and facial screens (a piece of fabric is tied over the eyes for a short time) – please see note 3 and 4
  • use of aversives, such as spraying water mist into the person’s face, or putting unpleasant smells in front of them – see note 3 and 4
  • use of physical restraints. For example, manual practices (such as holding the person) and protective equip­ment (such as helmets, gloves, or arm restraints) –see note 3 and 4.

Note 1: Some people on the autism spectrum do not enjoy social attention. For them, social attention may cause distress and increase challenging behaviours.

Note 2: We believe that “punishment-based” psychological techniques, such as response reduction procedures, aversives and physical restraint, should only be used in exceptional circumstances, with extreme caution and following established guidance on safeguarding. Some “punishment-based” behavioural strategies (such as the use of electric shock) are illegal in many countries including the UK.

Note 3: According to Minshawi et al (2014) “Physical restraint should be considered a last-resort form of behavioral intervention due to the restrictive nature of this intervention and the potential for injury or harm and should only be used as part of a structured behavior intervention plan”.

Medications

If the self injurious behaviour is pervasive, long standing or very severe, then medications may be considered. Many of these medications are designed to change the amount and the action of specific neurotransmitters in the brain in order to change the person’s behaviour. Those neurotransmitters include dopamine, endorphins, glutamate, and gamma-aminobutyric acid.

Specific types of medications used to treat self injurious behaviours include

  • Antidepressants - such as citalopram (Celexa) and sertraline (Lustral)
  • Antipsychotics - such as clonazapem (Klonopim) and lamotrigine (Lamictal).
  • Opioid antagonists – such as naltrexone (Nalorex) and naloxone (Prenoxad)

Please note: Medications should only be used under the direction of a suitably qualified practitioner, such as a paediatrician or psychiatrist, and only after there has been no or limited response to other interventions. The effects should be carefully monitored and reviewed on a regular basis and the medication withdrawn if no significant benefits are seen. Some medications have significant side effects or interactions with other substances. Some may even make the self injurious behaviours worse in some people.

Other approaches

There are numerous other interventions that have been suggested as ways to prevent or reduce self injurious behaviours in people on the autism spectrum. These include

  • Improvements to the social care system. For example ensuring that people on the autism spectrum have more control over their day to day lives and that they are not mistreated or abused
  • Standard health care. For example providing treatments for specific medical problems, such as migraine, otitis media and reflux
  • Assistive and adaptive technology/augmentative and alternative communication tools. For example, encouraging the person to use picture cards or pre-recorded voice messages in order to help them communicate more effectively
  • Physical interventions. For example, encouraging the person to undertake physical exercise (swimming, swinging or trampolining) in order to resolve arousal/motor control issues
  • Sensory interventions. For example, giving the person edible objects (like carrots or raw pasta) in order to provide alternative, safer sensory experiences or providing noise-dampening headphones to block out excessive noise
  • Diets and dietary supplements. For example, providing DMG or vitamin B6 supplements in order to improve the body’s neurological and immunological functioning

Please note: There is currently no high quality research evidence to suggest that these interventions are effective in reducing self injurious behaviours in people on the autism spectrum, although that does not necessarily mean that they do not work.

Current Research

Current Research Studies and Reviews

We have identified 30 research papers (reviews and other significant studies) of self injury in people on the autism spectrum published in peer-reviewed journals

Some of the papers looked at studies which included only people on the autism spectrum, for example, Weiss J. A. (2002). Others looked at studies which included people with a range of conditions including autism, for example, Oliver and Richards (2015).

Some of the papers looked only at individuals from a specific age range -such as children, for example Richman (2008); adolescents, for example Rattaz et al. (2015); or adults, for example Cooper et al. (2009). Other papers looked at individuals from across the age range, for example Richards et al. (2012).

Many of the papers looked at interventions designed to prevent or reduce self injury, for example, Minshawi N. F. et al. (2015). Other reviews looked at related issues, such as the assessment and prevalence of self injury, for example Duerden et al. (2012); or likely risk factors, for example Richman et al. (2013).

Many of the papers (for example, Minshawi et al, 2014) recommended undertaking a functional assessment of the self injurious behaviours before undertaking any intervention.

Some of the papers reported some benefits from specific types or groups of intervention.For example

  • Mahatmya. et al. (2008) reported that some behavioural approaches and some medications could be effective as treatments for self injurious behaviours
  • Minshawi (2014)  reported that some behavioural interventions (including antecedent-based intervention strategies, reinforcement-based intervention strategies, extinction-based intervention strategies, and punishment-based intervention strategies) could be effective as treatments for self injurious behaviours
  • King (2000) reported that some medications (including anticonvulsants, antidepressants, antipsychotics mood stabilisers, and opioid antagonists) could be beneficial as a treatment for self injurious behaviours
  • Cox and Schopler (1993) reported that the TEACCH approach could be effective as a treatment for self injurious behaviours

Some of the papers reported that there was currently mixed or insufficient evidence to support the use of some interventions. For example, Mahatyma et al (2008) reported that the medication naltrexone may reduce self injurious behaviours in some individuals on the autism spectrum but make them worse in others.

Status of Current Research Studies

There are limitations in most of the research reviews and studies we have identified to date and in most of the studies included in those reviews.

Some of the papers looked only at individuals from a specific age range such as children, for example Richman (2008); adolescents, for example Rattaz et al. (2015); or adults, for example Cooper et al. (2009).

Some of the papers were limited to people on the autism spectrum with additional conditions. For example, Richards et al. (2012) looked only at people on the autism spectrum with learning disabilities.

One paper, Lang et al. (2010), reported only on interventions for a specific form of self injurious behaviour - skin picking.

Some of the papers were limited to specific types of intervention.For example

  • Matson and LoVullo (2008) looked only at behavioural interventions
  • Rana et al. (2013) looked only at medications; Roy et al. (2015) looked only at a specific group of medications - opioid antagonists; Symons et al. (2004) looked only at a specific type of opioid antagonist - naltrexone
  • Cox and Schopler (1993) looked only at the TEACCH approach.

There appeared to be very few / no reviews which looked at other types of intervention, such as social care, standard health care, assistive and adaptive technology, augmentative and alternative communication, motor-sensory interventions, diets and supplements.

Some of the reviews included very small numbers of studies and/or participants on the autism spectrum. For example, Rana et al. (2013) included only five studies with a combined total of only 50 participants. Only one of these studies included any participants (17) who were on the autism spectrum and injuring themselves.

We were unable to identify any reviews which looked at how people on the autism spectrum (or their parents/cares) felt about the interventions being used to prevent or reduce self injurious behaviour.

Future Research

Summary of Curent Research

  • Self injury is very common in people on the autism spectrum and even more common in people on the autism spectrum with a learning disability.
  • There are a number of potential risk factors associated with some people on the autism spectrum which make it more likely that they will self injure. 
  • These risk factors include internal factors, such as specific genetic syndromes or painful medical conditions; interpersonal factors, such as being bullied by someone else; external factors, such as a lack of control over their living environment
  • There is a considerable amount of low quality research evidence to suggest that some behavioural techniques and some medications may prevent or reduce self injurious behaviours in some people on the autism spectrum
  • There is a limited amount of low quality research evidence to suggest that some medications may prevent or reduce self injurious behaviours in some people on the autism spectrum
  • Determining the benefits of other interventions to treat self injury for individuals on the autism spectrum is not currently possible.  We must wait for further research of sufficiently high quality to be completed 
  • There is some evidence to suggest that some interventions used to treat self injury, such as some medications, may cause significant side effects.  Because of this they should only be used with extreme care
  • There are very few  tools, such as the FLACC Pain Scale, which identify pain in individuals who cannot self-report.
  • There is a lack of research which involves people on the autism spectrum (including people who may be nonverbal) to review the causes, efficacy and ethical basis of interventions in this area.

Recommendations for Future Research

There is a need for further research into self injurious behaviours and people on the autism spectrum and the most effective interventions to overcome those self injurious behaviours. 

Specifically there is a need for studies which 

  • involve people on the autism spectrum to review the causes, efficacy and ethical basis of interventions in this area including individuals who may be non-verbal
  • identify the most effective tools to identify pain in individuals who cannot self-report
  • identify the factors that may cause self injurious behaviour and specific forms of self injurious behaviours in specific groups on the autism spectrum (age, gender, diagnosis, comorbid genetic condition, IQ etc)
  • identify which groups of people on the autism spectrum with self injurious behaviour might benefit most from which interventions
  • identify the specific components of interventions which appear to be most successful in preventing or reducing self injurious behaviour
  • examine the effects of interventions over a much longer period (longitudinal studies)
  • assess collateral gains (increased rate of learning, social relationships, improved activity patterns) following interventions
  • examine the interplay between different types of intervention (such as medications and behavioural interventions)
  • use more rigorous and robust methods (such as large scale, randomised controlled trials)

Best Practice

We have identified a number of organisations that have published best practice guidance on challenging behaviours.

Social Care Institute for Excellence (SCIE)

The Social Care Institute for Excellence (SCIE) is an independent charity that promotes good practice in social care services for adults and children throughout the UK.  The following is a summary of some of the key points from its guidance on challenging behaviours in adults (2010).

  • Challenging  behaviours can usually be prevented or reduced if the right kind of support is provided
  • Support should be flexible and personalised to the needs and circumstances of individual families
  • Support should be available from the behaviour support team or  equivalent service [such as the local autism team if it exists]
  • A comprehensive behaviour assessment should include: a functional assessment of behaviour, a medical health check, a mental health check, a communication assessment, and an assessment of any social and environmental factors that may affect behaviour.
  • A behaviour support plan should be developed, setting out what is likely to trigger the behaviour and how families and services should respond.

NICE Guidance

The National Institute for Health and Care Excellence (NICE) is a UK government body which supports healthcare professionals and others to make sure that the care they provide is of the best possible quality and offers the best value for money.

NICE has not published any specific recommendations on treating self injurious behaviours in people on the autism spectrum. However it has published recommendations on treating challenging behaviours – which includes self injurious behaviours – in people on the autism spectrum.

The following is a summary of the NICE guidance on challenging behaviours in people on the autism spectrum (2012, 2013).

Before initiating other interventions for challenging behaviour, you should address any identified factors that may trigger the behaviour by offering:

  • the appropriate care for physical disorders
  • treatment for any coexisting mental disorders
  • Interventions aimed at changing the physical or social environment.

Once you have tried these, you may need to consider a psychosocial intervention.  When deciding on the nature and content of a psychosocial intervention, use a functional analysis. The functional analysis should facilitate the targeting of interventions that address the function(s) of problem behaviour(s).

In addition to the functional analysis, base the choice of intervention(s) on:

  • the nature and severity of the behaviour
  • the person’s physical needs and capabilities
  • the physical and social environment
  • the capacity of staff and families, partners or carers to provide support
  • the preferences of the person with autism (and family, partner or carers)
  • past history of care and support.

Psychosocial interventions for challenging behaviour

Psychosocial interventions for challenging behaviour should be based on behavioural principles and informed by a functional analysis of behaviour.

They should include:

  • clearly identified target behaviour(s)
  • a focus on outcomes that are linked to quality of life
  • assessment and modification of environmental factors
  • a clearly defined intervention strategy
  • a clear schedule of reinforcement, and capacity to offer reinforcement promptly and contingently on demonstration of the desired behaviour
  • a specified timescale to meet intervention goals
  • a systematic measure of the target behaviour(s) taken before and after the intervention to ascertain whether the agreed outcomes are being met.

Combined interventions for challenging behaviour

Consider antipsychotic medication in conjunction with a psychosocial intervention for challenging behaviour when there has been no or limited response to other interventions.  Antipsychotic medication should be prescribed by a specialist and quality of life outcomes monitored carefully. Review the effects of the medication after 3–4 weeks and discontinue it if there is no indication of a clinically important response at 6 weeks.

Studies and Reviews

This  section provides details of some of the most significant scientific reviews and studies of self injurious behaviour in people on the autism spectrum. 

You can find more reviews and studies of self injurious behaviour in our publications database.

If you know of any other studies we should include please email info@researchautism.net with the details.

Please note that we are unable to supply publications unless we are listed as the publisher. However, if you are a UK resident you may be able to obtain them from your local public library, your college library or direct from the publisher.

Related Studies and Reviews


Other Reading

This page provides details of other publications on self injurious behaviour, autism and related issues.

You can find other publications on self injurious behaviour in our publications database.

If you know of any other publications we should include please email info@researchautism.net with the details. 

Please note that we are unable to supply publications unless we are listed as the publisher. However, if you are a UK resident you may be able to obtain them from your local public library, your college library or direct from the publisher.


Related Other Reading


Research Autism

The charity Research Autism carried out a study called "Identifying early risk markers of self-injurious behaviour".

Adolescent with autismProject Area: Examining the amount, forms and causes of self-injury in people on the autism spectrum

Research Team Caroline Richards, Prof. Chris Oliver and Dr. Debbie Allen

Institution: The Cerebra Centre for Neurodevelopmental Disorders, The School of Psychology, University of Birmingham

Status: Completed

Length: 3 years

Method: 5 complementary studies examining the amount, forms and causes of self-injury in people on the autism spectrum

Likely impact:

This project provided

  • Research that identifies the amount, forms and causes of self-injury in people on the autism spectrum
  • Important information about the size of the problem and knowledge about how to intervene to reduce self-injury

Related Links

Additional Information

Assessment

It can be very difficult to assess the level of pain in individuals who cannot self-report. At present, there are a limited number of tools, such as the FLACC Pain Scale, which are designed to identify pain in individuals who can’t communicate easily.

Literature Review

The purpose of our literature review was to identify existing scientific reviews, other significant scientific studies, and clinical guidance on the topic of self injurious behaviours and autism in order to provide evidence for our website entry on this topic.

Scope of the Literature Review

We searched a wide range of scientific databases (such as Medline, Psychinfo, CINAHL and ERIC) during January and February 2016.

We searched key sources of clinical guidance (such as the National Institute for Health and Care Excellence, The Social Care Institute for Excellence and the Cochrane Library).

We searched other relevant datbases (such as Autism Data and the Research Autism publications datbase).

Our search was limited to reviews and significant clinical guidance documents written in English and published in peer-reviewed journals or on relevant websites between 1990 and 2015.

Search Terms

We used a variety of search terms, including synonyms and related terms for autism (such as Asperger syndrome); self injury (such as self injurious behaviours); and clinical guidance.

Results

We identified 30 reviews and significant studies and three guidance documents (from SCIE and from NICE).

Strengths and Limitations

Our review was limited to an analysis of reviews, significant studies and clinical guidance on self injurious behaviours in people on the autism spectrum, published between 1990 and 2015.

It was not intended to be a systematic review of all the research papers on the topic of self injurious behaviour in autism, nor we did we carry out a meta-analysis of the reviews and studies we identified.

Feedback

If you know of other reviews we should include when we update our own review please email info@researchautism.net

Related Additional Information


Updated
02 Nov 2017