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Anxiety and Autism

Anxiety is a feeling of unease, such as worry or fear, which can be mild or severe. Everyone experiences feelings of anxiety at some point in their life. For example, you may feel worried and anxious about sitting an exam or having a medical test.

However research shows that many people on the autism spectrum are considerably more anxious than other people. There are numerous possible causes of anxiety in people on the autism spectrum. For example sometimes the anxiety is caused by underlying issues such as a fear of change or sensory sensitivities. Sometimes the anxiety is triggered by a specific event, such as a stranger entering the room or a dog barking.

Anxiety can cause all sorts of problems for people on the autism spectrum, their families and carers, and society as a whole. For example, it may cause some people to shut down altogether, preventing them from communicating with or interacting with other people. Alternatively it may cause some people to develop challenging behaviours – such as aggression or self injury.

There are a number of interventions commonly used to prevent or reduce anxiety in people on the autism spectrum.  These include psychological approaches (such as cognitive behavioural therapy), medications (such as anxiolytics) and a wide range of complementary and alternative approaches (such as weighted vests).  

There is very little high quality research evidence on the effectiveness of most of these interventions for people on the autism spectrum, although this does not necessarily mean that they do not work. NICE recommends treating people on the autism spectrum in the same way as you would anybody else who suffers from anxiety i.e. using a combination of psychological techniques and/or medication.

We believe that if you can identify the causes of  someone’ s anxiety, including any situations that are likely to make them anxious, you are more likely to be able to help them deal with that anxiety. We also believe that, whatever you do to reduce anxiety in an individual, you should do so in a safe, consistent and predictable environment as this will help.

Further research is needed to identify the most appropriate, comprehensive assessment and outcome measures for anxiety in people on the autism spectrum; to determine if anxiety is simply a condition that commonly occurs alongside autism, if it is a core feature of autism, or if it is a separate but not independent condition; and to identify which groups of people on the autism spectrum with anxiety might benefit most from which interventions

Key Features

Anxiety is a feeling of unease, such as worry or fear that can be mild or severe. Everyone experiences feelings of anxiety at some point in their life. For example, you may feel worried and anxious about sitting an exam or having a medical test or job interview. However when you are unable to control your worries and they affect your daily life you may have what doctors call an anxiety disorder.

Specific types of anxiety disorders include:

  • generalised anxiety disorder:  constant feelings of anxiety about everything
  • social anxiety disorder: persistent fear about social situations and being around people
  • fears and phobias: fears about specific things, such as a fear of dogs or dentists
  • obsessions and compulsions : unwanted, unpleasant thoughts / and repetitive behaviours designed to prevent those obsessive thoughts coming true
  • other anxiety disorders include panic disorder, separation anxiety disorder and post traumatic stress disorder.

Research shows that many people on the autism spectrum are considerably more anxious than other people and are also more likely to have a specific type of anxiety disorder.  However it is unclear if anxiety is simply a condition that commonly occurs alongside autism, if it is a core feature of autism, or if it is a separate but not independent condition. According to a review by Lecavalier et al. (2014),

“The results of this review raise questions about the underlying relationship of anxiety and ASD. First, anxiety disorders may be independent of ASD and reflect a co-occurring condition. Second, anxiety symptoms may be inextricably linked to core features of ASD. In this model, anxiety symptoms may be distributed from low to high in children with ASD just as other aspects of ASD such as language delay. Third, there may be certain genetic or environmental influences that elevate the risk for ASD and anxiety in some children. In this model, anxiety and ASD may be separate, but not independent such that the presence of one amplifies the other.”

Personal Accounts

Videos

In this video Joe Powell explains some of anxieties he faces every day.

Quotes

"Life is such a struggle; indecision over other things that other people refer to as trivial results in an awful lot of distress, if someone says 'We may go shopping tomorrow' or 'We will see what happens', they do not seem to realise that the uncertainty causes a lot of inner distress." Theresa Jolliffe

"Junior high was a real mess for me and then came puberty. My anxiety attacks came during puberty, and then all of my nerves started." Temple Grandin.

"I just got to a point where school had become a phobia and I couldn't get out of the car. As soon as I got in the car to go to school, I'd start having a panic attack." (16-year-old boy with Asperger syndrome, Simmons, 2008)

Statistics

Anxiety and specific anxiety disorders are very common in people on the autism spectrum. For example, according to a research review conducted by van Steensel, Bögels and Perrin (2011)

“The results reveal substantial comorbidity for anxiety in children and adolescents with an autistic spectrum disorder: nearly 40 percent were estimated to have clinically elevated levels of anxiety or at least one anxiety disorder…

“In the present study, specific phobia was most common at nearly 30%, followed by obsessive-compulsive disorder in 17%, social anxiety disorder and agoraphobia in nearly 17%, generalized anxiety disorder in 15%, separation anxiety disorder in nearly 9%, and panic disorder in nearly 2%. By way of comparison, anxiety disorders in typically developing children are estimated to occur in 2.2-27%...

“In addition, with the exception of panic disorder, the rates of the specific anxiety disorders observed in children with an autistic spectrum disorder are more than two times higher than in typically developing children … and higher than found in children seeking treatment for ADHD ... and learning difficulties.”

However, Grondhuis and Aman (2012) noted that it is very difficult to be sure of the actual prevalence rate of anxiety in children (and therefore adults) on the autism spectrum for a number of reasons. These include the lack of appropriate tools to measure anxiety in autistic children, symptom overlap between the two conditions (such as social avoidance, rigidity, and repetitive behaviors) and the fact that poor language and cognitive skills make it difficult for some children to convey their emotional states accurately.

Causes

There are a number of potential risk factors that may be associated with anxiety in people on the autism spectrum.

For example, Vasa and Mazurek (2015) have suggested that age, gender, cognitive function (higher or lower IQ), cognitive processing difficulties (such as fear of change), emotional regulation difficulties (such as an inability to correctly monitor your own emotions) and physiological difficulties (such as heightened arousal) may all be associated with anxiety. However they acknowledge that the evidence is mixed or contradictory on some of these issues.

Some researchers have suggested that other risk factors may be associated with anxiety. For example, Mazurek et al (2013) suggested that “anxiety, sensory over-responsivity and GI problems are possibly interrelated phenomenon for children with ASD, and may have common underlying mechanisms” while Rzepecka H. et al. (2011) suggested a link between sleep, anxiety and challenging behaviour.

Whatever the underlying risk factors, individuals on the autism spectrum may become more anxious under certain circumstances. For example,

  • some people may become anxious in social situations, such as when they have to meet strangers
  • some people may become anxious if their daily routine is changed
  • some people may become anxious when they experience specific, unpleasant sensations, such as hearing a dog bark or seeing flashing lights.
  • some people may become anxious if they are traumatised by unpleasant events, such as teasing or bullying

Effects

Anxiety can cause all sorts of problems for people on the autism spectrum, their families and carers, and society as a whole. For example, it may cause some people to shut down altogether, preventing them from communicating with or interacting with other people. Alternatively it may cause some people to develop challenging behaviours – such as aggression or self injury.

In practice, anxiety affects each individual on the autism spectrum in a different way and may even affect the same individual in different ways on different occasions. For example

  • some people may retreat into their particular interest. The more anxious they become, the more they retreat into the interest
  • some people may become more rigid in their thought processes and in their insistence upon routines. When they are happy and relaxed, they may become less rigid and fixed
  • some people may become controlling or oppositional. They may use tantrums, emotional blackmail, and non-compliance to ensure they avoid the circumstances that could increase anxiety
  • some people may become selectively mute – able to talk fluently when relaxed but unable to talk when stressed
  • some people may become angry, aggressive or violent. This aggression may be turned on others or on themselves in the form of self injury
  • some people may develop obsessive thoughts and compulsions

Many people on the autism spectrum become extremely sensitive to any situation that could increase their anxiety. They may get upset about situations that could make them anxious, even if those situations are unlikely to occur.

Interventions

Most of the interventions designed to help people on the autism spectrum deal with anxiety are the same as those designed to help anyone deal with anxiety. 

For example, the National Institute for Health and Care Excellence (NICE) recommends that anyone treating a specific type of anxiety in people on the autism spectrum (such as generalised anxiety disorder) should follow existing advice for treating that type of anxiety in other people.

We believe that if you can identify the causes of  someone’ s anxiety, including any situations that are likely to make them anxious, you are more likely to be able to help them deal with that anxiety. We also believe that, whatever you do to reduce anxiety in an individual, you should do so in a safe, consistent and predictable environment.

If the anxiety appears to be directly related to specific situations, then you may be able to change the situation in which the anxiety 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). 

Psychological approaches

There are a number of psychological approaches sometimes used to help people on the autism spectrum with anxiety. These approaches include

  • Psychotherapeutic practices such as cognitive behavioural therapy and mindfulness training
  • Behavioural techniques such as graduated exposure (to the thing that makes them anxious) and reinforcement strategies, accompanied by modelling and prompting techniques
  • Behavioural tools such as social stories and visual schedules
  • Programmes which teach the individual how to deal with specific stressful situations such as social skills groups and vocational skills training

Medications

There are a number of medications sometimes used to help people on the autism spectrum deal with anxiety including

  • Anxiolytics -  such as diazepam (Valium) and buspirone (BuSpar)
  • Antidepressants - such as citalopram (Celexa) and sertraline (Lustral)
  • Anticonvulsants/Mood stabilisers - such as clonazapem (Klonopim) and lamotrigine (Lamictal).

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 medications can actually make anxiety worse.

Other approaches

There are numerous other interventions sometimes used to help people on the autism spectrum deal with anxiety. These include acupuncture, assistance dogs, dietary supplements, hypnosis, low arousal techniques, massage, meditation, music therapy, neurofeedback training, physical exercise, relaxation techniques, sensory integrative training, transcranial magnetic stimulation, weighted vests, and yoga. 

Some alternative treatments should only be used for a limited period and under the direction of a suitably qualified practitioner, such as a GP or a dietician. Some alternative treatments may have significant side effects or interactions with other substances. Some alternative treatments can actually make anxiety worse.  

Current Research

Current Research Studies and Reviews

We have identified 21 research reviews of anxiety in people on the autism spectrum 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 children, adolescents or adults. Other reviews looked at individuals from across the age range
  • Most of the reviews looked at issues other than intervention, such as the assessment and prevalence of anxiety
  • Some of the studies looked at the causes of anxiety and/or the associations with other problems
  • Some of the reviews looked only at a wide range of interventions while others looked only at particular types of intervention (such as cognitive behavioural therapy or medications)
  • The most commonly assessed interventions were psychological interventions (such as cognitive behavioural therapy and specific behavioural techniques) or medications (such as antidepressants).

Results of Interventions

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

  • Hagopian and Jennett (2008) reported on the positive benefits of a range of behavioural techniques based on applied behaviour analysis
  • Reaven  (2011) reported on the positive benefits of cognitive behavioural therapy

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

  • Vasa et al (2014) reported “Four psychopharmacological, nine cognitive behavioral therapy (CBT), and two alternative treatment studies met inclusion criteria. Psychopharmacological studies were descriptive or open label, sometimes did not specify the anxiety phenotype, and reported behavioral activation. Citalopram and buspirone yielded some improvement, whereas fluvoxamine did not. Non-psychopharmacological studies were mainly randomized controlled trials (RCTs) with CBT demonstrating moderate efficacy for anxiety disorders in youth with high functioning ASD. Deep pressure and neurofeedback provided some benefit.”

Some of the reviews reported that some interventions were more effective for some individuals than for others. For example

  • Lang et al (2011) reported “Systematic reviews and randomized clinical trials suggest that cognitive behavior therapy in tandem with direct instruction of social skills using applied behavior analysis intervention components may be effective for treating anxiety in individuals with high functioning ASD. For individuals with ASD, an anxiety disorder, and an intellectual disability, systematic desensitization may be effective”.

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

  • Vasa et al (2014) reported “…youth with ASD may be particularly vulnerable to behavioral activation with certain [antidepressant] SSRIs. Behavioral activation is a well-known side effect of SSRIs in children and is characterized by a cluster of symptoms including increased activity level, impulsivity, insomnia, or disinhibition without manic symptoms. Other treatment data in youth with ASD similarly show high rates of SSRI-induced behavioral activation. The SSRIs are amongst the most commonly prescribed medications in youth with ASD. There are, however, no large scale RCTs examining their efficacy for treatment of anxiety in youth with ASD, and as such, there are no data to guide evidence based prescribing of these medications. Concern therefore exists regarding the overprescribing of SSRIs and risk of subjecting children to potential side effects, especially activation.”

Status of Current Research Studies

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 limited to people on the autism spectrum of a specific age. For example,

  • Grondhuis and Aman (2012) and van Steensel et al. (2011) looked only at children and adolescents on the autism spectrum.

Some of the reviews were limited to people on the autism spectrum with additional conditions. For example,

  • Hagopian and Jennett (2008) looked only at people on the autism spectrum with learning disabilities.

Some of the reviews looked at issues other than interventions. For example,

  • Kerns and Kendall (2012) looked at the symptoms and classification of anxiety, while Wigham S. McConachie H. (2014) looked only at assessment tools. 

Some of the reviews were limited to specific types of intervention or specific forms of anxiety. For example,

  • Hagopian and Jennett (2008) looked only at behavioural interventions designed to treat phobias and Nadeau et al (2011) looked only at cognitive behavioural therapy and antidepressants.

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

  • Hagopian and Jennett (2008) reported that half of the studies they identified were  uncontrolled case reports
  • Vasa et al (2014) reported that the studies of alternative treatments “... were short-term and included small sample sizes.”

Some of the reviews were written by authors involved in the development or use of specific types of intervention.

  • For example, Reaven (2011) reported on cognitive behavioural therapy.

Future Research

Summary of Current Research

  • Anxiety and specific anxiety disorders are very common in people on the autism spectrum
  • It is unclear if anxiety is simply a condition that commonly occurs alongside autism, if it is a core feature of autism, or if it is a separate but not independent condition
  • It is difficult to measure anxiety in people on the autism spectrum because of overlap between symptoms in the two conditions, the limited ability of some people on the autism to assess and report on their own anxiety,  and a lack of specific tools designed to measure anxiety in autistic people
  • There are a number of underlying risk factors associated with autism and anxiety although the relationship between them is unclear and sometime contradictory.  Potential risk factors include age, gender, diagnosis, cognitive function, cognitive processing difficulties, emotional regulation difficulties, physiological difficulties etc.
  • There is very strong research evidence to suggest that cognitive behavioural therapy may be effective in reducing anxiety in some children and young people on the autism spectrum without learning disabilities, provided it has been adapted to meet their particular needs
  • Determining the benefits of other interventions to treat anxiety in for individuals on the autism spectrum is not currently possible.  We must wait for further research of sufficiently high quality to be completed.  The fact that there is little or no research evidence to show that some interventions are effective doesn’t mean that they do not work. It may simply mean that more research is required to find out if they do
  • There is some evidence to suggest that some interventions used to treat anxiety, such as some antidepressants, may cause significant side effects.  Because of this they should only be used with extreme care
  • There is a lack of robust and rigorous clinical studies which examine the efficacy of interventions over the long term in real world settings
  • There is a lack of research which identifies which groups of people on the autism spectrum with anxiety might benefit most from which interventions or which identify the specific components of interventions which appear to be most successful in reducing anxiety
  • There is a lack of studies which involve racially, ethnically, and socioeconomically diverse participants
  • There are no studies which involve people on the autism spectrum to review the efficacy and ethical basis of interventions in this area.

Recommendations for Future Research

There is a need for further research into the anxieties faced by people on the autism spectrum and the most effective interventions to overcome those anxieties. Specifically there is a need for studies which 

  • Identify the most appropriate, comprehensive assessment and outcome measures for anxiety in people on the autism spectrum.
  • Determine if anxiety is simply a condition that commonly occurs alongside autism, if it is a core feature of autism, or if it is a separate but not independent condition
  • Identify the potential risk factors that may cause anxiety and specific anxiety disorders in specific groups on the autism spectrum
  • Identify which groups of people on the autism spectrum with anxiety might benefit most from which interventions
  • Identify the specific components of interventions which appear to be most successful in reducing anxiety
  • Examine if any reductions in anxiety 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)
  • Use more rigorous and robust methods (such as large scale, randomised controlled trials)
  • Involve participants who are more racially, ethnically, and socioeconomically diverse
  • Involve people on the autism spectrum to review the efficacy and ethical basis of interventions in this area.

Best Practice

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 guidance on anxiety in adults on the autism spectrum

NICE makes the following recommendations re the treatment of anxiety and other mental health problems in adults on the autism spectrum.

"For adults with autism and coexisting mental disorders, offer psychosocial interventions informed by existing NICE guidance for the specific disorder" and "For adults with autism and coexisting mental disorders, offer pharmacological interventions informed by existing NICE guidance for the specific disorder."

In practice this means treating the person with autism in the same way as you would anybody else who suffers from anxiety i.e. using a combination of psychological techniques and/or medication.

NICE guidance on anxiety in children and young people on the autism spectrum

NICE makes the following recommendations re the treatment of anxiety in children and young people on the autism spectrum.

‘In the absence of evidence of how coexisting mental health disorders (including ADHD, OCD, PTSD, depression and conduct disorder) should be treated differently in autism, the GDG agreed that management should be in line with existing NICE guidance. There was, however, evidence for clinical efficacy of CBT programmes with autism – specific modifications on coexisting anxiety for children with autism. There was evidence for a positive treatment response to CBT in terms of no longer meeting diagnostic criteria for the anxiety disorder and/or showing global improvement in anxiety symptoms." (NICE, 2013)

In practice this means treating the child or young person with autism in the same way as you would any other child or young person who suffers from anxiety i.e. using a combination of psychological techniques and/or medication, especially cognitive behavioural therapy.

NICE goes on to state that cognitive behavioural therapy may be effective in reducing anxiety in some children and young people on the autism spectrum without learning disabilities, provided it has been adapted to meet their particular needs. According to NICE this could mean using ‘a more concrete and structured  approach with a greater use of written and visual information (which may include worksheets, thought bubbles, images and “tool boxes”)’ and ‘placing greater emphasis on changing behaviour, rather than [thoughts], and using the behaviour as the starting point for intervention”

NICE guidance on specific types of anxiety

NICE has published the following additional guidance on specific types of anxiety

  • Generalised anxiety disorder and panic disorder (with or without agoraphobia) in adults. (2011). London: National Institute for Health and Clinical Excellence
  • Social anxiety disorder. (2013). London:  National Institute for Health and Clinical Excellence
  • Obsessive-compulsive disorder: Core interventions in the treatment of obsessive-compulsive disorder and body dysmorphic disorder.  (2005). London: National Institute for Health and Clinical Excellence

Studies and Reviews

This section provides details of some of the most significant reviews and studies on anxiety and autism.

You can find more reviews and studies on anxiety in our publications database.

If you know of any other reviews or 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 section provides details of other publications on anxiety, autism and related issues.

You can find more publications on anxiety in our publications database.

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

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


Additional Information

Literature Review

The purpose of our literature review was to identify existing scientific reviews and clinical guidance on the topic of anxiety 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 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).

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); anxiety (such as phobia); and clinical guidance.

Results

We identified 21 reviews and two guidance documents on anxiety and autism.

Strengths and Limitations

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

It was not intended to be a systematic review of all research studies on the topic of anxiety 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 anxiety, such as phobias.

Summary of Review

You can find a summary of our review, the Essential Guide to Anxiety and Autism in the Reading section of this entry.

Feedback

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

Updated
02 Nov 2017