Behaviours of Concern and Autism

Challenging child

Many autistic people are reported to have behaviours of concern, also known as challenging or disruptive or distressed behaviours.

Behaviours of concern are defined as 'culturally abnormal behaviour(s) of such an intensity, frequency or duration, that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities.'

There are numerous possible causes of behaviours of concern in autistic people. For example, some behaviours are caused as much by the way someone is supported - or not supported - as by their autism. Other behaviours may be caused by the fact that some autistic people struggle to understand what is happening around them or struggle to communicate what they want or need. Behaviours of concern may also be caused by anxiety and stress, sensory processing differences, underlying medical conditions, and specific situations that the person finds distressing.

Behaviours of concern can cause all sorts of problems for autistic people, their families and carers, and society as a whole. For example, they may make it difficult for someone to make friends, to attend school/college, to hold down regular employment or to live independently.

There are a number of interventions commonly used to prevent or reduce behaviours of concern in autistic people. These include behavioural techniques, medications, medical procedures, augmentative and alternative communication, assistive and augmentative technology, psychotherapeutic interventions and physical restraints.

There is very little high quality research evidence on the effectiveness of most of these interventions for autistic people, although this does not necessarily mean that they do not work. There is some high quality research which suggests that some antipsychotics may help to prevent or reduce behaviours of concern in some individuals but the same research suggests that antipsychotics may also cause significant and adverse side effects.

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

Further research is needed to examine the impact of behaviours of concern on autistic people (and their families and carers) and to identify those interventions which appear to be effective in preventing or reducing those behaviours in specific individuals. Any future research should also involve autistic people to review the ethical basis of interventions in this area.

Key Features

Many autistic people are reported to have behaviours of concern. But because this term means different things to different people it is important to define it accurately.

For some people, the term behaviours of concern is wide-ranging and refers to anything an individual may do which is inappropriate or which stops them taking part in everyday activities or affects their ability to learn and to develop. So it can include problems as diverse as refusing food, staying awake all night, wetting the bed, removing clothes in public or flicking fingers. Of course, what seems challenging to one person may seem perfectly reasonable to someone else.

For other people, the term refers only to those behaviours which are likely to cause significant harm to autistic people or to other people. So it is restricted to problems such as aggression, self injury, destruction of property, throwing temper tantrums, defiance and oppositionality, restricted and repetitive behaviours, or wandering off unsupervised.

Emerson (1995) defines behaviours of concern (which he calls challenging behaviours) as 'culturally abnormal behaviour(s) of such an intensity, frequency or duration, that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities.'

Montgomery et al (2014) note that "Unless these particular behaviours are considered intense, frequent, and/or long lasting and compromise physical safety and/or significantly threaten learning, they are generally not characterized as challenging behaviours."

In individuals without an intellectual disability behaviours of concern are more likely to be categorised as offending and be dealt with by the criminal justice system.

Some autistic people claim that they don't have behaviours of concern; they just behave differently to everybody else. In their view, 'neurotypical' people are just as likely to behave strangely, for example by using idioms that autistic people can't understand.

Personal Accounts

Temple Grandin

'I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream.'

Luke Jackson

' I can only speak for myself when I say that if one subject is on my mind or I am fascinated by something, then literally everything else is insignificant ... I feel an overwhelming excitement in me that I cannot describe. I just have to talk about it and the irritation at being stopped can easily develop into raging fury.'

(Source: Luke Jackson, Freaks, Geeks and Asperger Syndrome)

Anonymous

'I've always known I think differently to others, but it's only really been since I've matured that I understand what the differences are. When I was younger I was called 'disruptive', as I matured I was called 'radical'. hahaha. Same coin.'

(Source: personal correspondence to Research Autism from someone who wishes to remain anonymous, received February 2008).

Statistics

It is difficult to be precise about the number of autistic people with behaviours of concern for a number of reasons including the fact that the number depends on which definition you are using. However it is clear that behaviours of concern are more common in autistic people than in ‘neurotypical’ people. Different reviews have provided different estimates of the numbers. For example,

Matson et al (2009) reported that 94.3% of children on the autism spectrum have been reported to display some form of challenging behaviour
Matson et al (2011) reported that in a study of children with ASD, 13–30% were found to engage in severe challening behaviours. In a clinical sample of adults with intellectual disability and co-morbid ASD, 87.9% were noted to engage in CBs.

Some researchers report that behaviours of concern are more common in autistic people with ‘severe’ autism and/or who also have learning disabilities. For example,

Hutchins and Prelock (2014) stated ‘Recent prevalence estimates of challenging behaviors in individuals with ASD/ID range from 35.8% to 64.3% with most studies reporting that more than half of these individuals engage in more than one challenging behavior. Not surprisingly, the severity of challenging behaviors is related to both AS and ID severity and the rates for individuals with ASD and ASD/ID are substantially higher than individuals diagnosed with ID alone (i.e., 10-15%).’

Causes

According to the Social Care Institute for Excellence (2010) behaviours of concern are often caused as much by the way someone is supported - or not supported - as by their disability.

In addition, some autistic people may

struggle to understand what is happening around them or struggle to communicate what they want or need
struggle to understand what is happening around them or struggle to communicate their emotional and physical needs
feel they have no control over what happens to them or the chance to make choices about what they want to do
be in pain or discomfort as a result of physical problems such as ear ache, tooth ache or stomach ache
have sensory processing differences which can cause an aversion to particular smells or tastes, noise, lighting, or heat. These differences can also cause difficulties knowing where their bodies are in space
be reacting to change or unfamiliar situations or events. Many autistic individuals find it difficult to cope with change of any kind, however trivial
not be comfortable in social situations, such as having to meet new people or answer questions
be asked to do more than they can cope with, such as a task that is too difficult, too long, or uninteresting
want something they can’t have, such as access to a preferred activity or toy
be being bullied, which may make them more aggressive or withdrawn
be reacting to the side effects of medications or other interventions
once in a while, be tired, fed up or just having an ‘off day’.

Some behaviours of concern may have been learnt. For example, if parents or teachers pay attention to or give-in to behaviours of concern in order to avoid further outbursts, a child may continue that behaviour. So, if the child is excluded from classroom activities (and is therefore able to avoid situations they dislike), they may continue that behaviour.

Some behaviours of concern may have several causes and these causes may occur at the same time, making it harder to work out what is going on. For example an adult may be responding to physical pain but may also be responding to the reactions of the other people around them because they have learnt that this get results.

Other issues such as parental stress, anxiety, lack of sleep, money or housing worries can all have an effect on parents and carers which may worsen the child’s behaviours. In such cases, individuals and families will need support to deal with these issues.

Effects

Behaviours of concern can cause all sorts of problems for autistic people, their families and carers, and society as a whole. For example,

According to Matson et al (2011) "CBs in adults with ASD have been cited as a major impediment to independent living, characterized by adversely impacting one’s socialization, access to community-based services, employment status and residential living. Other negative outcomes from CBs include increased risk of physical or chemical restraint, as well as injury to the person or caregiver. The presence of CBs can interfere with learning, and can prevent the acquisition of adaptive behaviours and more socially acceptable behaviours. Other consequences of CBs include the burden on society. For example, additional specialized services, such as early intervention, special education, adult segregated residential placements and other services necessary to manage CBs require financial resources, as well as the resources involved with staffing these programmes."
According to NICE (2013) "Behaviour that challenges usually has a significant impact on individuals themselves, on their parents and carers and those who work with them. This may come about through physical injury to the person or his/her carers, but also through lost opportunities for participation in home, school, work and leisure activities in the wider community or through poor interpersonal relationships. The burden on carers is considerable; behaviour that challenges usually causes high levels of stress and often restricts other opportunities for parents who may have to give up work or reduce their employment to care for their son or daughter because other options are precluded due to the severity of the behaviour. There is frequently significant impact on the wider family, particularly siblings, as they may be the victims of aggression but also because of the impact on their home environment, including decreased attention from parents, lack of opportunity for family activities and concerns about bringing friends home."

Interventions

There are numerous interventions which are used to prevent or reduce behaviours of concern in some autistic people. For example,

Behavioural techniques (such as changing the layout of the room, changing the order in which things happen, or rewarding the person when they do what you want) may be used to encourage the person to use alternative, more appropriate behaviours
Augmentative and alternative communication (such as the Picture Exchange Communication System, sign language and voice output communication aids) may be used to provide the person with a more effective means to communicate
Assistive and augmentative technology (such as computer apps and visual schedules) may be used to provide information about what the person is expected to do and when
Medications (such as antipsychotics and anticonvulsants ) may be used to change the chemical balance in the person’s body in order to reduce irritability
Medical interventions may help to treat specific physical disorders (such as stomach ache)
Psychotherapeutic interventions (such as cognitive behavioural therapy or mindfulness training) may be used to treat specific mental health problems (such as anxiety and depression)
Protective equipment (such as mittens and splints) may be used to restrain and protect the person and those around them
Physical interventions (such as physical takedowns) may be used to restrain and protect the person and those around them
Other interventions (such as physical exercise) may also be used in order to prevent or reduce challenging behaviours.

If the behaviour appears to be directly related to anxiety and stress in specific situations, then you can change the situation in which the behaviour occurs. Sometimes, relatively simple changes can have a significant impact (for example removing noise or clutter in the room or allowing a child to stay in the school library during play times if he or she finds play times stressful).

Current Research

Current Research Studies and Reviews

We have identified 30 research reviews of behaviours of concern in autistic people published in peer-reviewed journals.

Some of the reviews looked only at studies which included autistic people; others looked at studies which included people with a range of conditions including autism and learning disabilities.

Some of the reviews looked only at individuals from a specific age range -such as primary school children, adolescents or adults. Other reviews looked at individuals from across the age range.
Some of the reviews looked at interventions designed to reduce behaviours of concern. Other reviews looked at related issues, such as the assessment and prevalence of behaviours of concern.
Some of the reviews looked only at studies of particular types of intervention (such as behavioural interventions). Other reviews looked at a wide range of different interventions.
The most commonly assessed interventions were behavioural interventions, medications, and augmentative and alternative communication.

Results of Interventions

Some of the reviews reported some benefits from specific types of intervention. For example,

Doehring et al. (2014) reported that many relatively simple behavioural interventions could be used to decrease severe problem behaviors among children and adolescents with autism spectrum disorder and/or intellectual disability.
Hutchins and Prelock (2014) reported that interventions, such as functional communication training, interpretive strategies, the Picture Exchange Communication System, augmentative and alternative communication, and pivotal response training, can support increased communication and decrease challenging behaviour.
Matson and Dempsey (2007) reported that ‘medication does have a significant role to play in persons with ASD, particularly with respect to older adolescents and adults with severe challenging behaviors and/or comorbid psychopathology but that only if these problems are chronic, severe and unresponsive to psychological and educationally based treatments.’
Kaat and Lecavalier (2013) reported that parent training has been the primary mode of psychosocial treatment for behaviours of concern in autistic people and has some support for its efficacy.
McNellis and Harris (2014) reported that ‘... newer models of residential treatment that combine specialized comprehensive services, evidence-based interventions, intensive family support and training, and treatment overlap with community providers can offer an effective and efficient treatment option.’

Some of the reviews reported that there was currently mixed or insufficient evidence to support the use of some interventions. For example,

Stigler (2014) reported ‘Research focused on the treatment of severe irritability has primarily involved the atypical antipsychotics, including risperidone and aripiprazole. Anticonvulsants have also been investigated for targeting serious behavioral disturbance; however findings have been mixed. Advances in the pharmacotherapy of irritability in ASD continue to inform practice. Research is needed to develop safer and more effective drug treatments for serious behavioral disturbance in this population.’

Many of the reviews reported that undertaking a functional analysis of the behaviours of concern before undertaking an intervention was more likely to lead to successful results.For example

Horner et al (2002) reported that the one consistent finding has been that interventions developed from functional assessment information appear more likely to result in significant behaviour reduction.

Some of the reviews reported that some interventions were more effective for some individuals than for others. Other studies reported there were no differences. For example

Walker and Snell (2013) reported that ‘AAC interventions were more effective with younger children than with adults [with various disabilities].’

Heyvaert et al. (2014) reported ‘The group of participant characteristics included in our study(i.e., age, gender, criteria used for diagnosing autism, intellectual disability level, and level of verbal communication ability)did not significantly influence the overall efficacy of the behavioral interventions.’

Some of the reviews reported that interventions were equally effective regardless or the type of challenging behaviour.For example

Heyvaert et al. (2014) reported that ‘we can conclude that the behavioural treatments were equally effective regardless of the type of problem behavior that was targeted.’

Some of the reviews reported that some types of intervention could be potentially hazardous or difficult to implement. For example

Coury (2011) reported that risperidone and aripiprazole ‘cause significant adverse effects including marked weight gain, sedation, and risk of extrapyramidal symptoms. Strength of evidence around adverse events is high for both risperidone and aripiprazole. When considered in aggregate, risperidone and aripiprazole are efficacious [for challenging behaviours] but are associated with significant adverse effects that limit their use to patients with severe impairment or risk of injury.’
Doehring et al (2014) reported that some behavioural interventions reveal a risk for injury and a need for specialized assessment and placement, careful tracking, and high-quality treatment that few agencies could likely replicate without increases in training and support.

Other findings

Hutchins and Prelock (2014) reported that, ‘whichever strategy is employed, a genuine attitude of respect for the individual and his/her perspective needs to be adopted. There are misunderstandings between people and what we call challenging behaviors can make perfect sense when viewed by the person with autism. In short, an attitude of respect and non-judgment helps move us toward understanding the reasons behind maladaptive behaviors so that we may address them effectively and with the most careful consideration.’

Status of Current Research Studies and Reviews

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

Some of the reviews were undertaken some time ago. For example, Aman (2004), Horner et al (2002), McClintock et al (2002), and Mirenda (1997) were all undertaken more than 10 years ago which means that they do not include the most recent research.

Some of the reviews were limited to people on the autism spectrum of a specific age. For example, Sawyer et al (2014) looked only at adults on the autism spectrum whereas Horner et al (2002) looked only at children on the autism spectrum aged 8 years or younger.

Some of the interventions were limited to people on the autism spectrum with additional conditions. For example, Hutchins and Prelock (2014) looked only at people on the autism spectrum with a learning disability whereas Kaat and Lecavalier (2013) looked only at children and adolescents on the autism spectrum with disruptive behaviour disorders.

Many of the reviews were limited to specific types of intervention.For example,

Heyvaert et al. (2014), Machalicek et al (2007), Hoer et al (2002) and Montgomery et al (2014) looked only at behavioural interventions
Duran and Merges (2004), Hutchins and Prelock (2014) and Mirenda (1997) looked only at forms of augmentative and alternative communication
Aman (2004), Coury (2011), Matson and Dempsey (2007) and Sawyer et al (2014) looked only at medications
Klinger et al (2013) looked only at caregiver- mediated approaches while McNellis and Harris (2014) looked only at residential treatments.

Most of the reviews included very small numbers of studies and/or participants on the autism spectrum. For example

Horner et al (2002) included only nine studies
Sawyer et al (2014) included only seven studies
Mirenda (1997) included only eight participants on the autism spectrum.

Most of the reviews identified only low quality studies or did not report on the quality of the studies.For example

Heyvaert et al. (2014) reported only on single-subject research papers
McNellis and Harris (2014) reported only on case studies
Mirenda (1997) did not report on the quality of the studies, although it is likely that they were all single-subject research papers.

Some of the reviews (Griffith et al, 2013 and Griffith and Hastings, 2014) were a synthesis of qualitative research and did not attempt to provide a quantitative analysis of interventions.

Some of the reviews were written by authors involved in the development or use of specific types of intervention. For example, Marc Durand (one of the co-authors of a review on functional communication training) developed functional communication training with Edward Carr.

Future Research

Summary of Current Research

Behaviours of concern are common in autistic people and more common in autistic people with learning disabilities
Behaviours of concern often occur when someone has problems understanding what is happening around them or communicating what they want or need
Behaviours of concern may also be associated with a number of other factors including underlying medical conditions, mental health problems, sensory sensitivities, and specific situations that the person finds distressing
There is very little high quality research evidence on the effectiveness of most interventions for behaviours of concern in autistic people, although this does not necessarily mean that they do not work
There is some high quality research which suggests that some antipsychotics may help to prevent or reduce behaviours of concern in some individuals but the same research suggests that antipsychotics may also cause significant and adverse side effects
There is some limited research evidence to suggest that undertaking a functional analysis to determine the underlying functions of (reasons for) the behaviour may result in more effective interventions being used
There is some limited research evidence to suggest that some behavioural techniques (such as rewarding someone when they do what you want) may be helpful in helping to prevent or reduce behaviours of concern in some autistic people
There is some limited research evidence to suggest that some forms of assistive and augmentative technology / augmentative and alternative communication (such as voice output communication aids) may be helpful in helping to prevent or reduce behaviours of concern in some autistic people
There is insufficient research evidence to suggest that using any kind of physical restraint will help to prevent or reduce behaviours of concern.
There is insufficient research evidence to suggest that any other types of intervention are effective

Recommendations for Future Research

There is a need for further research into behaviours of concern by autistic people and the most effective interventions to overcome those behaviours. Specifically there is a need for studies which

are more scientifically rigorous and robust (randomised controlled trials)
provide more comprehensive, standardised assessment methods of challenging behaviours in autistic people
identify and examine the co-occurrence of challenging behaviours and co-morbidities , such as disruptive behavioural disorders, using standardised diagnostic schemes
include autistic adults, particularly adults with learning disabilities
include individuals with the most severe behaviours, such as self-injurious behaviours, aggression, property destruction and tantrums
identify the factors that may cause challenging behaviours in specific autistic individuals
identify the specific components of interventions which appear to be most successful in reducing behaviours of concern
examine if any reductions in challenging behaviours can occur in typical settings (home or school) with typical agents (parents and teachers)
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)
involve autistic people to review the ethical basis of interventions in this area

Best Practice

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

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 behaviours of concern in adults (2010).

Behaviours of concern 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 [we think a sensory profile is important too]
A behaviour support plan should be developed, setting out what is likely to trigger the behaviour and how families and services should respond.

National Institute for Health and Care Excellence (NICE)

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.

The following is a summary of the NICE guidance on behaviours of concern in autistic people (2012, 2013).

Before initiating other interventions for behaviours of concern, 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 behaviours of concern

Psychosocial interventions for behaviours of concern 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 behaviours of concern

Consider antipsychotic medication in conjunction with a psychosocial intervention for behaviours of concern 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 studies and reviews of behaviours of concern and autistic people.

You may be able to find more studies and reviews on behaviours of concern in our publications database

If you know of any other publications we should list on this page please email info@informationautism.org

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

Aman M. G. (2004) Management of hyperactivity and other acting-out problems in patients with autism spectrum disorder. Seminars in Pediatric Neurology. 11(3), Read Abstract (New Window)
Brookman-Frazee L. et al. (2006) Parenting interventions for children with autism spectrum and disruptive behavior disorders: opportunities for cross-fertilization. Clinical Child and Family Psychology Review. 9(3), Read Abstract (New Window)
Carr M. E. (2016) Self-management of challenging behaviours associated with autism spectrum disorder: A meta-analysis. Australian Psychologist. 51(4), Read Abstract (New Window)
Doehring P. et al. (2014) Behavioral approaches to managing severe problem behaviors in children with autism spectrum and related developmental disorders: a descriptive analysis. Child and Adolescent Psychiatric Clinics of North America. Read Abstract (New Window)
Durand V. M., Merges E. (2001) Functional communication training: a contemporary behavior analytic intervention for problem behaviors. Focus on Autism and Other Developmental Disabilities. 16(2), Read Abstract (New Window)
Embse N. v. d., Brown A., Fortain J. (2011) Facilitating inclusion by reducing problems behaviors for students with autism spectrum disorders. Intervention in School and Clinic. 47(1), Read Abstract (New Window)
Fung L. K. et al. (2016) Pharmacologic treatment of severe irritability and problem behaviors in autism: a systematic review and meta-analysis. Pediatrics. 137 Read Abstract (New Window) Read Full (New Window)
Griffith G. M., Hutchinson L., Hastings R. P. (2013) I'm not a patient, I'm a person: The experiences of individuals with intellectual disabilities and challenging behavior: A thematic synthesis of qualitative studies. Clinical Psychology: Science and Practice. 20(4), Read Abstract (New Window)
Griffith G. M., Hastings R. P. (2014) He's hard work but he's worth it. The experience of caregivers of individuals with intellectual disabilities and challenging behaviour: A meta-synthesis of qualitative research. Journal of Applied Research in Intellectual Disabilities. 27(5), Read Abstract (New Window)
Heyvaert M. et al. (2014) Efficacy of behavioral interventions for reducing problem behavior in persons with autism: An updated quantitative synthesis of single-subject research. Research in Developmental Disabilities. 35(10), Read Abstract (New Window)
Hutchins T. L., Prelock P. A. (2014) Using communication to reduce challenging behaviors in individuals with autism spectrum disorders and intellectual disability. Child and Adolescent Psychiatric Clinics of North America. 23(1), Read Abstract (New Window)
Kaat A. J., Lecavalier L. (2013) Disruptive behavior disorders in children and adolescents with autism spectrum disorders: A review of the prevalence, presentation, and treatment. Research in Autism Spectrum Disorders. 7(12), Read Abstract (New Window)
Klinger L. G., Ence W., Meyer A. (2013) Caregiver-mediated approaches to managing challenging behaviors in children with autism spectrum disorder. Dialogues in Clinical Neuroscience. 15(2), Read Abstract (New Window) Read Full (New Window)
Machalicek W. et al. (2007) A review of interventions to reduce challenging behavior in school settings for students with autism spectrum disorders. Research in Autism Spectrum Disorders. 16(3), Read Abstract (New Window)
Matson J. L., Fodstad J. C., Rivet T. T. (2009) The relationship of social skills and problem behaviors in adults with intellectual disability and autism or PDD-NOS. Research in Autism Spectrum Disorders. 3(1), Read Abstract (New Window)
Matson J. L., Rivet T. T. (2008) Characteristics of challenging behaviours in adults with autistic disorder, PDD-NOS, and intellectual disability. Journal of Intellectual and Developmental Disability. 33(4), Read Abstract (New Window)
Matson J. L., Shoemaker M. (2009) Intellectual disability and its relationship to autism spectrum disorders. Research in Developmental Disabilities. 30(6), Read Abstract (New Window)
Matson J. L. et al. (2011) Issues in the management of challenging behaviours of adults with autism spectrum disorder. CNS Drugs. 25(7), Read Abstract (New Window)
Matson J. L., Dempsey T. (2008) Autism spectrum disorders: Pharmacotherapy for core symptoms and challenging behaviors. Journal of Developmental and Physical Disabilities. 20(2), Read Abstract (New Window)
Matson J. L. et al. (2011) What is the evidence for environmental causes of challenging behaviors in persons with intellectual disabilities and autism spectrum disorders? Research in Developmental Disabilities. 32(2),
Matson J. L., Nebel-Schwalm M. (2007) Assessing challenging behaviors in children with autism spectrum disorders: a review. Research in Developmental Disabilities. 28(6), Read Abstract (New Window)
McClintock K., Hall S., Oliver C. (2003) Risk markers associated with challenging behaviours in people with intellectual disabilities: a meta-analytic study. Journal of Intellectual Disability Research. 47(6), Read Abstract (New Window)
McNellis C. A., Harris T. (2014) Residential treatment of serious behavioral disturbance in autism spectrum disorder and intellectual disability. Child and Adolescent Psychiatric Clinics of North America. 23(1), Read Abstract (New Window)
Mirenda P. (1997) Supporting individuals with challenging behavior through functional communication training and AAC: Research review. Augmentative and Alternative Communication. 13(4), Read Abstract (New Window)
Montgomery J. M. et al. (2014) Interventions for challenging behaviours of students with autism spectrum disorders and developmental disabilities: A synthesis paper. Exceptionality Education International. 23(1), Read Full (New Window)
Sawyer A. et al. (2014) Psychopharmacological treatment of challenging behaviours in adults with autism and intellectual disabilities: A systematic review. Research in Autism Spectrum Disorders. 8(7), Read Abstract (New Window)
Stigler K. A. (2014) Psychopharmacologic management of serious behavioral disturbance in ASD. Child and Adolescent Psychiatric Clinics of North America. 23(1), Read Abstract (New Window)
Stoesz B. M. et al. (2016) Reduce, manage or cope: a review of strategies for training school staff to address challenging behaviours displayed by students with intellectual developmental disabilities. Journal of Research in Special Educational Needs. 16(3), Read Abstract (New Window)
Totsika V., Hastings R. P. (2009) Persistent challenging behaviour in people with an intellectual disability. Current Opinions in Psychiatry. 22(5), Read Abstract (New Window)
Walker V. L., Snell M. E. (2013) Effects of augmentative and alternative communication on challenging behaviour:A meta-analysis. Augmentative and Alternative Communication. 29(2), Read Abstract (New Window)

Additional Information

Literature Review

The purpose of our literature review was to identify existing scientific reviews and clinical guidance on the topic of behaviours of concern 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 July and August 2015.

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 also searched other relevant databases (such as Autism Data and the Research Autism publications database).

Our search was limited to reviews and other significant clinical guidance documents written in English and published in peer-reviewed journals or relevant websites between 1990 and 2016.

- Search Terms

We used a variety of search terms, including synonyms and related terms for autism (such as Asperger syndrome); behaviours of concern (such as challenging or disruptive behaviour); and clinical guidance.

- Results

We identified 30 reviews and 3 guidance documents, as well as more than 250 other research studies.

- Strengths and Limitations

Our review was limited to an analysis of reviews and clinical guidance on behaviours of concern in autistic people, published between 1990 and 2015.

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

We did not include reviews of specific forms of behaviours of concern, such as aggression or self injurious behaviour.

Updated: 21 Sep 2022