Introduction

People with autism or Asperger syndrome are particularly vulnerable to mental health problems such as anxiety and depression, especially in late adolescence and early adult life (Tantam & Prestwood, 1999). Ghaziuddin et al (1998) found that 65 per cent of their sample of patients with Asperger syndrome presented with symptoms of psychiatric disorder.

However, as mentioned by Howlin (1997), "the inability of people with autism to communicate feelings of disturbance, anxiety or distress can also mean that it is often very difficult to diagnose depressive or anxiety states, particularly for clinicians who have little knowledge or understanding of developmental disorders". Similarly, because of their impairment in non-verbal expression, they may not appear to be depressed (Tantam, 1991). This can mean that it is not until the illness is well developed that it is recognised, with possible consequences such as total withdrawal; increased obsessional behaviour; refusal to leave the home, go to work or college etc; and threatened, attempted or actual suicide. Aggression, paranoia or alcoholism may also occur.

In treating mental illness in the patient with autism or Asperger syndrome, it is important that the psychiatrist or other health professional has knowledge of the individual with autism being assessed. As Howlin (1997) says, "it is crucial that the physician involved is fully informed about the individuals usual style of communication, both verbal and non-verbal". In particular it is recommended, if possible, that they speak to the parents or carers to ensure that the information received is reliable, eg any recent changes from the normal pattern of behaviour, whilst at the same time respecting the right of the person with autism to be treated as an individual.

Wing (1996) asserts that psychiatrists should be aware of autism spectrum disorders as they appear in adolescents and adults, especially those who are more able, if diagnostic errors are to be avoided. Attwood (1998) also stresses the importance of the psychiatrist being knowledgeable in Asperger syndrome. Tantam and Prestwood (1999), however, state that treatments for anxiety and depression that are also effective for people without autism are effective for people with autism. They go on to say that practitioners and psychiatrists with no special knowledge of autism or Asperger syndrome can be of considerable assistance in treating these conditions. Typically, however, it is of great advantage if the psychiatrist has experience of autism/Asperger syndrome.

Here, we concentrate on mental health in people with high-functioning autism or Asperger syndrome although references will be made to autism per se where appropriate. Emphasis will be on depression, anxiety and obsessive compulsive disorder, but it is important to realise that people with Asperger syndrome also experience other problems, such as impulsive behaviour and mood swings. To date there has been little research in this area but, as Carpenter (2001) has found, these can sometimes be incapacitating. Treatment can include conventional mood stabilising drugs, but helping the person to improve their self-awareness is also important.

Depression

Depression is common in individuals with Asperger syndrome with about 1 in 15 people with Asperger syndrome experiencing such symptoms (Tantam, 1991). People with Asperger syndrome leaving home and going to college frequently report feelings of depression as demonstrated by the personal accounts that can be found at www.users.dircon.co.uk/~cns/index.html

As one young person says, "I also had to deal with anger, frustration, and depression that I had been keeping inside since high school". A study by Kim et al (2000) also found depression to be more common in children aged 10-12 years with high-functioning autism/Asperger syndrome than in the general population of children of the same age.

Depression in people with Asperger syndrome may be related to a growing awareness of their disability or a sense of being different from their peer group and/or an inability to form relationships or take part in social activities successfully. Personal accounts by young people with Asperger syndrome frequently refer to attempts to make friends but "I just did not know the rules of what you were or were not supposed to do" www.users.dircon.co.uk/~cns/jeanpaul.html

Indeed, some people have even been accused of harassment in their attempts to socialise, something that can only add to their depression and anxiety; "I also did not know how to approach girls and ask them to go out with me. I would just walk up and talk to them, whether they wanted to talk to me or not. Some accused me of harassment, but I thought that was the way everybody did that." www.users.dircon.co.uk/~cns/jeanpaul.html

The difficulties people with Asperger syndrome have with personal space can compound this sort of problem. For example, they may stand too close or too far from the person to whom they are speaking.

Other precipitating factors are also seen in many people without autism who are depressed and include loneliness, bereavement or other form of loss, sexual frustration, a constant feeling of failure, extreme anxiety levels etc.

Childhood experiences such as bullying or abuse may also result in depression, as can a history of misdiagnosis. Another possibility is that the person is biologically predisposed to depression (Attwood, 1998). However, there are, of course, many other factors that may trigger the depression and this list should not be taken as exhaustive.

Tantam and Prestwood (1999) describe the depression of someone with Asperger syndrome as taking the same form as in people without the condition, although the content of the illness may be different. For example, the depression might show itself through an individuals particular preoccupations and obsessions and care must be taken to ensure that the depression is not diagnosed as schizophrenia or some other psychotic disorder or just put down to autism. It is important to assess the individuals depression in the context of their autism, ie their social disabilities, and any gradual or sudden changes in behaviour, sleep patterns, anger or withdrawal should always be taken seriously.

Symptoms of depression can be psychological (poor concentration/memory, thoughts of death or suicide, tearfulness); physical (slowing down or agitation, tiredness/lack of energy, sleep problems, disturbed appetite (weight loss or gain)); or affects of mood and motivation (eg low mood, loss of interest or pleasure, hopelessness, helplessness, worthlessness, withdrawal or bizarre beliefs etc.) People with depression can also experience periods of mania.

Lainhart and Folstein (1994) cite three approaches that need to be made in diagnosing depression in a person with autism. The first concerns a deterioration in cognition, language, behaviour or activity. The complaint is rarely couched in terms of mood. Secondly, it is important to take the patients history to establish their baseline, patterns of activity and interests. It is this pattern with which the presenting patterns can be compared. Thirdly, an attempt should be made to assess the patients mental state, both directly and through the parent or carer, if present. Examples would include reports of crying, difficulties in separating from their parent/carer for an interview, increased/decreased activity, agitation or aggression. There may be evidence of new or increased self-injury or worsening autistic features, such as increased proportion of echolalia or the reappearance of hand-flapping.

Attwood (1998) also refers to the inability that some people with Asperger syndrome have in expressing appropriate and subtle emotions. They may, for example, laugh or giggle in circumstances where other people would show embarrassment, discomfort, pain or sadness. He stresses that this unusual reaction, for example after a bereavement, does not mean the person is being callous or is mentally ill. They need understanding and tolerance of their idiosyncratic way of expressing their grief.

In treating depression, medications used in general practice may be prescribed (Carpenter, 1999). It is important to realise, however, that such agents do not make an impact on the primary social impairments that underlie autism. See Gringras (2000) for a discussion on the use of psychopharmacological prescribing for children with autism or Santosh and Baird (1999) for a analysis of psychopharmacotherapy in children and adults with intellectual disability (including autism).

As with any treatment for depression, adjustments may have to be made to find the appropriate drug and dosage for that particular person. Side effects should also be monitored and effort made to ensure the benefits of the treatment outweigh the penalties (Carpenter, 1999). It is also important to identify the cause for the depression and this may involve counselling (see below), social skills training, or meeting up with people with similar interests and values.

Anxiety

Anxiety is a common problem in people with autism and Asperger syndrome. Grandin (2000) writes that, at puberty, fear was her main emotion. Any change in her school schedule caused intense anxiety and the fear of a panic attack. Anxiety attacks started shortly after her first menstrual period.

Muris et al (1998) found that 84.1% of children with pervasive developmental disorder met the full criteria of at least one anxiety disorder (phobia, panic disorder, separation anxiety disorder, avoidant disorder, overanxious disorder, obsessive compulsive disorder). This does not necessarily go away as the child grows older.

Attwood (1998) states that many young adults with Asperger syndrome report intense feelings of anxiety, an anxiety that may reach a level where treatment is required. For some people, it is the treatment of their anxiety disorder that leads to a diagnosis of Asperger syndrome.

People with Asperger syndrome are particularly prone to anxiety disorders as a consequence of the social demands made upon them. As Attwood (1998) explains, any social contact can generate anxiety as to how to start, maintain and end the activity and conversation. Changes to daily routine can exacerbate the anxiety, as can certain sensory experiences.

One way of coping with their anxiety levels is for persons with Asperger syndrome to retreat into their particular interest. Their level of preoccupation can be used a measure of their degree of anxiety. The more anxious the person, the more intense the interest (Attwood, 1998). Anxiety can also increase the rigidity in thought processes and insistence upon routines. Thus, the more anxious the person, the greater the expression of Asperger syndrome. When happy and relaxed, it may not be anything like as apparent.

One potentially good way of managing anxiety is to use behavioural techniques. For children, this may involve teachers or parents looking out for recognised symptoms, such as rocking or hand-flapping, as an indication that the child is anxious. Adults and older children can be taught to recognise these symptoms themselves, although some might need prompting. Specific events may also be known to trigger anxiety eg a stranger entering the room. When certain events (internal or external) are recognised as a sign of imminent or increasing anxiety, action can be taken for example, relaxation, distraction or physical activity.

The choice of relaxation method depends very much on the individual and many of the relaxation products available commercially can be adapted for use for people with autism/Asperger syndrome. Young children may respond to watching their favourite video. Older children and adults may prefer to listen to calming music. There is much music on the market, both from specialist outfits and regular music stores, that is written specifically to bring about a feeling of tranquillity. It is important the person does not have social demands, however slight, made upon them if they are to benefit. It is also important that they have access to a quiet room.

Other techniques include massage (this should be administered carefully to avoid sensory defensiveness), aromatherapy, deep breathing and using positive thoughts. Howlin (1997) suggests the use of photographs, postcards or pictures of a pleasant or familiar scene. These need to be small enough to be carried about and should be laminated in order to protect them. Howlin also stresses the need to practice whichever method of relaxation is chosen at frequent and regular intervals in order for it to be of any practical use when anxieties actually arise.

An alternative option, particularly if the person is very agitated, is to undertake a physical activity (Attwood, 1998). Activities may include using the swing or trampoline, going for a long walk perhaps with the dog, or doing physical chores around the home.

Drug treatment may be effective for anxiety. Individuals may respond to buspirone, propranilol or clonazepam (Santosh and Baird, 1999) although Carpenter (2001) finds St. Johns Wort, benzodiazepines and selective serotonin reuptake inhibitors (SSRI) antidepressants to be more effective. As with all drug treatments it may take time to find the correct drug and dosage for any particular person. Such treatment must only be conducted through a qualified medical practitioner.

Whatever method is chosen to reduce anxiety, it is crucial to identify the cause of the anxiety. This should be done by careful monitoring of the precedents to an increase in anxiety and the source of the anxiety tackled.

Obsessive compulsive disorder

Obsessive compulsive disorder (OCD) is described as a condition characterised by recurring, obsessive thoughts (obsessions) or compulsive actions (compulsions) (Thomsen, 1999). Thomsen goes on to say that obsessive thoughts are ideas, pictures of thoughts or impulses, which repeatedly enter the mind, whereas compulsive actions and rituals are behaviours which are repeated over and over again.

Baron-Cohen (1989) argues that the stereotypic obsessive action seen in children with autism differs from the child with OCD. As Thomsen (1999) explains, the child with autism does not have the ability to put things into perspective. Although terminology implies that certain behaviours in autism are similar to those seen in OCD, these behaviours fail to meet the definition of either obsessions or compulsions. They are not invasive, undesired or annoying, a prerequisite for a diagnosis of OCD. The reason for this is that people with (severe) autism are unable to contemplate or talk about their own mental states. However, OCD does appear often to coincide with Asperger syndrome, although there is very little literature examining the relationship between the two (Thomsen, 1999).

Szatmari et al (1989) studied a group of 24 children. He discovered that 8% of the children with Asperger syndrome and 10% of the children with high-functioning autism were diagnosed with OCD. This compared to 5 per cent of the control group of children without autism but with social problems. Thomsen el at (1994) found that in the children he studied, the OCD continued into adulthood.

People with Asperger syndrome can sometimes respond to conventional behavioural treatment to help reduce the symptoms of OCD. However, as with anyone, this will only be effective if the person wants to stop their obsessions. An alternative is use medication to reduce the anxiety around the obsessions, thus enabling the person to tolerate the frustration of not carrying out their obsession (Carpenter, 2001).

Schizophrenia

There is no evidence that people with autism spectrum conditions are any more likely than anyone else to develop schizophrenia (Wing, 1996).

It is also important to realise that people have been diagnosed as having schizophrenia when, in fact, they have Asperger syndrome. This is because their 'odd' behaviour or speech pattern, or the person's strange accounts or interpretations of life, are seen as a sign of mental illness, such as schizophrenia. Obsessional thoughts can become quite bizarre during mood swings and these can be seen as evidence of schizophrenia rather than the mood disorder that actually are. However, should someone with Asperger syndrome experience hallucinations or delusions that they find distressing, conventional antipsychotic medications can be prescribed. However, it is recommended that only the newer atypical antipsychotics are used, as people with Asperger syndrome often have mild movement disorders (Carpenter, 2001). Cognitive behaviour therapy and other psychological management methods may be effective.

Psychological treatments

A primary psychological treatment for mood disorders is cognitive behavioural therapy as it is effective in changing the way a person thinks and responds to feelings such as anxiety, sadness and anger, addressing any deficits and distortions in thinking (Attwood, 1999).

Hare and Paine (1997) list ways in which the therapy can be adapted for use with people with Asperger syndrome: having a clear structure eg protocols of turn-taking; adapting the length of sessions therapy might have to be very brief eg 10-15 minutes long; the therapy must be non-interpretative; the therapy must not be anxiety provoking as any arousal of emotion during therapy may be very counterproductive; group therapy should not be used. It is also important that the therapist has a working knowledge and understanding of Asperger syndrome in a counselling setting ie the difficulty people have dealing things emotionally, finding it best to deal with things intellectually. The therapist and client can work towards explicit operational goals, the focus being on concrete and specific symptoms.

Attwood (1999) gives a succinct overview of the components of the counselling process. Hare and Paine (1997) stress that such therapy is not a treatment or even an amelioration of the characteristics of Asperger syndrome itself. It merely opens the psychotherapeutic door for people with such a diagnosis.

Catatonia

Catatonia is a complex disorder covering a range of abnormalities of posture, movement, speech and behaviour associated with over- as well as under-activity (Rogers, 1992; Bush et al, 1996; Lishman, 1998).

There is increasing research and clinical evidence that some individuals with autism spectrum disorders, including Asperger syndrome, develop a complication characterised by catatonic and Parkinsonian features (Shah and Wing, 2006; Wing and Shah, 2000; Realmuto and August, 1991).

In individuals with autism spectrum disorders, catatonia is shown by the onset of any of the following features:

• increased slowness affecting movements and/or verbal responses;
• difficulty in initiating completing and inhibiting actions;
• increased reliance on physical or verbal prompting by others;
• increased passivity and apparent lack of motivation.

Other manifestations and associated behaviours include Parkinsonian features including freezing, excitement and agitation, and a marked increase in repetitive and ritualistic behaviour.

Behavioural and functional deterioration in adolescence is common among individuals with autism spectrum disorders (Gillberg and Steffenburg, 1987). When there is deterioration or an onset of new behaviours, it is important to consider the possibility of catatonia as an underlying cause. Early recognition of problems and accurate diagnosis are important as it is easiest to manage and reverse the condition in the early stages. The condition of catatonia is distressing for the individual concerned and likely to exacerbate the difficulties with voluntary movement and cause additional behavioural disturbances.

There is little information on the cause or effective treatment of catatonia. In a study of referrals to Elliot House who had autism spectrum disorders, it was found that 17% of all those aged 15 and over, when seen, had catatonic and Parkinsonian features of sufficient degree to severely limit their mobility, use of speech and carrying out daily activities. It was more common in those with mild or severe learning disabilities (mental retardation), but did occur in some who were high functioning. The development of catatonia, in some cases, seemed to relate to stresses arising from inappropriate environments and methods of care and management. The majority of the cases had also been on various psychotropic drugs.

There is very little evidence about effective treatment and management of catatonia. No medical treatment was found to help those seen at Elliot House (Wing and Shah, 2000). There are isolated reports of individuals treated with anti-depressive medication and electro-convulsive therapy (ECT) (Realmuto and August, 1991; Zaw et al, 1999).

Given the scarcity of information in the literature and possible adverse side effects of medical treatments, it is important to recognise and diagnose catatonia as early as possible and apply environmental, cognitive and behavioural methods of the management of symptoms and underlying causes. Detailed psychological assessment of the individuals, their environment, lifestyle, circumstances, pattern of deterioration and catatonia are needed to design an individual programme of management. General management methods on which to base an individual treatment programme are discussed in Shah and Wing (2001).

Conclusion

People with Asperger syndrome can experience a variety of mental heath problems, notably anxiety and depression, but also impulsiveness and mood swings. They may be misdiagnosed as having a psychotic disorder and it is therefore important psychiatrists treating them are knowledgeable about autism and Asperger syndrome. Conventional drug treatment can be used to treat depression, anxiety and other disorders. Behavioural treatments and therapies can also be effective. However, any treatment must be careful tailored to suit an individual and overseen by a qualified practitioner. However, any psychotropic medicine should be used with extreme caution and strictly monitored with people with autism due to their susceptibility to movement disorders, including catatonia.

References

Attwood, T. (1998). Aspergers syndrome: a guide for parents and professionals. London: Jessica Kingsley. 1853025771.
Available from the NAS Publications Department

Attwood, T. (1999). Modifications to cognitive behaviour therapy to accommodate the unusual cognitive profile of people with Aspergers syndrome. Paper presented at autism99 internet conference.
Available from the NAS Information Centre.

Baron-Cohen, S. (1989). 'Do autistic children have obsessions and compulsions?' in British Journal of Clinical Psychology, 28(99), pp193-200.

Bush, G. et al (1996). 'Catatonia. I. Rating scale and standardising examination'. Acta Psychiatrica Scandinavica, 93, pp. 129-136.

Carpenter, P. (1999). The use of medication to treat mental illness in adults with autism spectrum disorders. Paper presented at autism99 internet conference.
Available from the NAS Information Centre.

Carpenter, P. (2001). Personal correspondence.

Ghaziuddin, E., Weidmer-Mikhail, E. and Ghaziuddin, N. (1998). 'Comorbidity of Asperger syndrome: a preliminary report' in Journal of Intellectual Disability Research, 42(4), pp. 279-283.

Gillberg, C. and Steffenburg, S. (1987). 'Outcome and prognostic factors in infantile autism and similar conditions: a population based study of 46 cases followed through puberty' in Journal of Autism and Developmental Disorders, 17(2), pp. 273-287. 
Available from the NAS Information Centre.

Hare, D.J. and Paine, C. (1997). 'Developing cognitive behavioural treatments for people with Aspergers syndrome' in Clinical Psychology Forum, 110, pp. 5-8.

Howlin, P. (1997). Autism: preparing for adulthood. London: Routledge.
Available from the NAS Publications Department.

Kim, J. et al (2000). 'The prevalence of anxiety and mood problems amongst children with autism and Asperger syndrome' in Autism, 4(2), pp. 117-132.
Available from the NAS Information Centre.

Lainhart, J.E. and Folstein, S.E. (1994). 'Affective disorders in people with autism: a review of published cases' in Journal of Autism and Developmental Disorders, 24(5), pp. 587-601.
Available from the NAS Information Centre.

Lishman, W. A. (1998). Organic psychiatry: the psychological consequences of cerebral disorder, pp. 349-356.  Oxford: Blackwell. 

Muris, P. et al. (1998). 'Comorbid anxiety symptoms in children with pervasive developmental disorders' in Journal of Anxiety Disorders, 12(4), pp. 387-393.

Realmuto, G. and August, G. (1991). 'Catatonia in autistic disorder; a sign of comorbidity or variable expressions?' in Journal of Autism and Developmental Disorders, 21(4), pp. 517-528.
Available from the NAS Information Centre.

Rogers, D. (1992). Motor disorder in psychiatry: towards a neurological psychiatry.  Chichester: Wiley. 

Santosh, P.J. and Baird, G. (1999). 'Psychopharmacotherapy in children and adults with intellectual disability' in The Lancet, Vol 354, July 17, pp.233-242.

Szatmari, P., Bartoluci, G. and Bremner, R. (1989). 'Aspergers syndrome and autism: comparison of early history and outcome' in Developmental Medicine and Child Neurology, 31, pp. 709-720.

Tantam, D. (1991). 'Asperger syndrome in adulthood' In U. Frith (ed.) Autism and Asperger Syndrome, Cambridge University Press, pp. 147-183.
Available from the NAS Information Centre.

Tantam, D. and Prestwood, S. (1999). A mind of one's own: a guide to the special difficulties and needs of the more able person with autism or Asperger syndrome. 3rd ed. London: National Autistic Society.
Available from the NAS Publications Department.

Thomsen, P.H. (1994). 'Obsessive-compulsive disorder in children and adolescents. A 6-22 year follow-up study. Clinical descriptions of the course and continuity of obsessive-compulsive symptomatology' in European Child and Adolescent Psychiatry, 3, pp. 82-86.

Thomsen, P.H. (1999). From thoughts to obsessions: obsessive compulsive disorder in children and adolescents. London: Jessica Kingsley. 1853027219.

Wing, L. (2002). The autistic spectrum: a guide for parents and professionals. London: Constable and Robinson. 1841196746.
Available from the NAS Publications Department.

Wing, L. and Shah, A. (2000). 'Catatonia in autistic spectrum disorders' in British Journal of Psychiatry, 176, pp. 357-362. 

Zaw, F. K. et al (1999). 'Catatonia, autism and ECT' in Developmental Medicine and Child Neurology, 41, pp. 843-845.

Further reading

Andrews, D.N. (2006). 'Mental health issues surrounding diagnosis, disclosure and self-confidence in the context of Asperger syndrome' in  Murray D. Coming out Asperger. London: Jessica Kingsley, pp. 94-107.
Available from the NAS Information Centre.

Attwood T. (2006). 'Psychotherapy' in Attwood T. The complete guide to Asperger syndrome. London: Jessica Kingsley, pp. 316-326.
Available from the NAS Information Centre.

Berney, T. (2006). Psychiatry and Asperger syndrome. In: Murray D. ed. Coming out Asperger. London: Jessica Kingsley, pp. 67-87.
Available from the NAS Information Centre.

Berney, T. (2007). 'Mental health needs of children and adolescents with autism spectrum disorders' in Advances in Mental Health and Learning Disabilities, Vol. 1(4), pp. 10-14.
Available from the NAS Information Centre.

Carpenter, B. et al. (2007). 'Identifying and responding to the needs of young people with ASD and mental health problems: implications for organisation, research and practice' in Carpenter B. and Egerton J. eds. New horizons in special education: evidence-based practice in autism. Clent: Sunfield Publications, pp. 77-88.
Available from the NAS Information Centre.

Carpenter, P. (2007). 'Mental illness in adults with autism spectrum disorders' in Advances in Mental Health and Learning Disabilities, 1(4), pp. 3-9.
Available from the NAS Information Centre.

de Bruin, E.I. et al. (2007). 'High rates of psychiatric co-morbidity in PDD-NOS' in Journal of Autism and Developmental Disorders, 37(5), pp. 877-886.
Available from the NAS Information Centre.

de Bruin, E.I. et al. (2007). 'Behaviour management problems as predictors of psychotropic medication and use of psychiatric services in adults with autism' in Journal of Autism and Developmental Disorders, 37(6), pp. 1080-1085.
Available from the NAS Information Centre.

Dhossche, D.M. et al eds. (2006). Catatonia in autism spectrum disorders. London: Jessica Kingsley. 0123668735.

Dhossche, D.M., Shah, A. and Wing, L. (2006). 'Blueprints for the assessment, treatment, and future study of catatonia in autism spectrum disorders' in Dhossche D.M. et al eds. Catatonia in autism spectrum disorders. London: Academic Press, pp. 267-284.
Available from the NAS Information Centre.

Farrugia, S. and Hudson, J. (2006). 'Anxiety in adolescents with Asperger syndrome: negative thoughts, behavioral problems and life interference' in Focus on Autism and Other Developmental Disabilities, 21(1), pp. 25-35.
Available from the NAS Information Centre.

Ghaziuddin, M. (2005). Mental health aspects of autism and Asperger syndrome. London: Jessica Kingsley. 1843107279.
Available from the NAS Publications Department.

Grandin, T. (2006). 'Stopping the constant stress: a personal account' in Baron M.G. et al eds. Stress and coping in autism, New York: Oxford University Press, pp. 71-81.
Available from the NAS Information Centre.

Hutton, J. et al (2008). 'New-onset psychiatric disorders in individuals with autism' in Autism, 12(4), pp. 373-390.
Available from the NAS Information Centre.

Konstantareas, M.M. (2005). 'Anxiety and depression in children and adolescents with Asperger syndrome' in Stoddart K.P. ed. Children, youth and adults with Asperger syndrome: integrating multiple perspectives. London: Jessica Kingsley, pp. 47-59.
Available from the NAS Information Centre.

Lemkuhl, H.D. et al. (2008). 'Brief report: Exposure and response prevention for obsessive compulsive disorder in a 12-year-old with autism' in Journal of Autism and Developmental Disorders, 38(5), pp. 977-981.
Available from the NAS Information Centre.

Leyfer, O.T. et al. (2006). 'Comorbid psychiatric disorders in children with autism: interview development and rates of disorders' in Journal of Autism and Developmental Disorders, 36(7), pp. 849-861.
Available from the NAS Information Centre.

Posey, D.J. et al. (2007). 'Treatment of autism with antipsychotics' in Hollander E.L. and Anagnostu E. eds. Clinical manual for the treatment of autism. Washington: American Psychiatric Publishing, pp. 99-120.
Available from the NAS Information Centre.

Royal College of Psychiatrists. (2006). Psychiatric services for adolescents and adults with Asperger syndrome and other autistic-spectrum disorders. London: Royal College of Psychiatrists.
Download from: www.rcpsych.ac.uk

Scahill, L. and Martin, A. (2005). 'Psychopharmacology' in Volkmar F.R. et al (eds.) Handbook of autism and pervasive developmental disorders, Vol. 2, 3rd ed., New Jersey: John Wiley & Sons, pp. 1102-1117.
Available from the NAS Information Centre.

Shah, A. and Wing, L. (2006). 'Psychological approaches to chronic catatonia-like deterioration in autism spectrum disorders' in Dhossche D.M. et al eds. Catatonia in autism spectrum disorders. London: Academic Press, pp. 245-264.
Available from the NAS Information Centre.

Sterling, L. et al. (2008). 'Characteristics associated with presence of depressive symptoms in adults with autism spectrum disorder' in Journal of Autism and Developmental Disorders, 38(6), pp. 1010-1018.
Available from the NAS Information Centre.

Stewart, M.E. et al. (2006). 'Presentation of depression in autism and Asperger syndrome: a review' in Autism, Vol. 10(1), pp. 103-116.
Available from the NAS Information Centre.

Tsai, L.Y. (2006). 'Diagnosis and treatment of anxiety disorders in individuals with autism spectrum disorder' in Baron M.G. et al eds. Stress and coping in autism. New York: Oxford University Press, pp. 388-440.
Available from the NAS Information Centre.

Ward, A. and Russell, A. (2007). 'Mental health services for adults with autism spectrum disorders' in Advances in Mental Health and Learning Disabilities, 1(4), pp. 23-28.
Available from the NAS Information Centre.

Wing, L. and Shah, A. (2006). 'A systematic examination of catatonia-like clinical pictures in autism spectrum disorders' in Dhossche D.D. et al eds. Catatonia in autism spectrum disorders. London: Academic Press, pp. 21-39.
Available from the NAS Information Centre.

Xenitidis, K. et al. (2007). 'Assessment of mental health problems in people with autism' in Advances in Mental Health and Learning Disabilities, 1(4), pp. 15-22.
Available from the NAS Information Centre.

By Christine Deudney

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Last updated: August 2008

A number of people with autism spectrum disorders (ASDs) are involved in the Criminal Justice System (CJS) as either victims, witnesses or offenders.

There is no evidence of an association between ASD and criminal offending. In fact, due to the rigid way many people with ASD keep to rules and regulations, they are usually more law-abiding than the general population. People with an ASD are more at risk as victims of crime rather than as offenders.
 
Here. we give an overview of the possible reasons why people with ASD may come into contact with the CJS, the procedures involved and the sources of support that are available. The term ASD will be used throughout the information sheet to refer to people across the autism spectrum including those with a diagnosis of autism or Asperger syndrome. Many people with ASD who come into contact with the CJS may be undiagnosed or misdiagnosed.

Prevention

• Ensure that the child or adult with ASD carries an identity card stating their personal details, emergency contacts and an explanation of their condition. It may also be worth mentioning on this card that the person has the right to an appropriate adult (for more information on appropriate adults see the section 'At the police station' below). Autism alert cards containing all this information are available from The National Autistic Society. (See the 'Useful reading and resources' section at the end of this information sheet).
• If possible, teach the child or adult to inform any police officers that they come into contact with that they have autism.
• Remember that unusual behaviour that seems cute or endearing in a child with ASD may be interpreted as odd or threatening in an adult. It is therefore important to make clear rules about appropriate behaviour from a young age, particularly around obsessional interests. Rules can have their drawbacks for people with ASD as they may be adhered to rigidly and sometimes inappropriately. However, Howlin (1997) suggests it is generally better to establish strict rules during childhood that can be relaxed in adulthood rather than to implement stricter rules in adulthood which may then be resented.
• Social stories can be used to teach children and adults with ASD about appropriate social behaviour and what to do in certain situations. For further information on this, please contact the Autism Helpline, or see the resources section at the end of this information sheet.
• Investigate social skills training. Unfortunately, provision for this is patchy, but in some areas social skills training is offered through schools, colleges or local autism societies. There are also a number of resources available to use at home. For further information see the resources section at the end of this information sheet or contact the NAS Autism Helpline (see details below).
• Keep all the written information you have about your child's condition, for example their diagnosis and any specialist reports ever written about them. These may be useful if they ever come into contact with the police.

The Home Office has produced a useful leaflet called 'Keep Safe: a guide to personal safety' which is aimed at adults with a learning disability. It offers tips on keeping safe in the home and out in the community. Copies can be downloaded from www.crimereduction.gov.uk/keepsafe.pdf

Why might people with ASD become involved in the CJS?

People with ASD can find themselves in contact with the CJS for a variety of reasons. The following examples are the main types of offences people with ASD may commit:

• Offences relating to social naivety. For example, the desire to have friends has led some people with ASD to be befriended by, and become unwitting accomplices of, criminals. People with ASD often do not understand the motives of other people.
• Offences of an aggressive nature. These are often related to an unexpected change in routine or to the environment, which may cause great anxiety and distress. A typical example would be a delay in public transport.
• Offences relating to a misunderstanding of social cues. For example, many people with ASD have difficulties with eye contact, which will often be avoided or may be fleeting. In some cases, eye contact may be prolonged or inappropriate and on occasion this has been interpreted as making unwanted sexual advances.
• People with ASD often adhere rigidly to rules. They may become extremely agitated if other people break these rules. For example, one man with ASD was known to kick cars that were parked illegally.

People with ASD often do not understand the implications of their behaviour and due to their difficulties with social imagination they often do not learn from past experience. They may repeatedly offend if not offered the correct support and intervention.
 
In addition, the methods used by the police may exacerbate a situation for someone with ASD. For example, the use of handcuffs and restraint may be extremely frightening for someone with ASD who does not understand what is happening and may not be able to communicate their fears in an appropriate way. This, coupled with the use of loud sirens, may cause an individual to experience sensory overload and try to escape a situation by running away or, in extreme circumstances, hitting out at people, including the police. The very presence of the police may cause great anxiety to a law-abiding person with ASD who has no comprehension of the crime they may have committed.
 
Criminal acts carried out by people with ASD can be due to a variety of factors, but there is rarely a deliberate intention to hurt others.

Police contact

• Switch off sirens and flashing lights.
• Keep calm. People with ASD can often sense anxiety in other people, which in turn can make them more anxious.
• People with ASD may not understand personal space. They may invade your personal space, or they may need more personal space than the average person.
• Approach the person in a non threatening way and keep facial expressions and gestures to a minimum.
• If you know the person's name, use it at the start of each sentence so that they know you are addressing them.
• Give clear, slow and direct instructions. For example, "Jack, get out the car".
• Allow the person time to process information and don't expect an immediate response to instructions.
• Avoid using sarcasm, metaphors or irony. People with ASD may take things literally.
• Do not shout at the person with ASD.
• Make sure you explain clearly to the person what is happening. If you are taking them somewhere else, clearly explain where they are going to lessen their anxiety.
• People with ASD often understand visual information better than spoken words. It may be useful to use visual supports to explain to the person with ASD what is happening or, if they can read, to put it in writing. More information on this is available from the Autism Helpline (see details below). If possible, avoid touching the person.
• Do not attempt to stop the person from flapping or from other repetitive movements as this can sometimes be a self-calming strategy and may subside once things have clearly been explained to them.
• Check the person for any injuries in as non-invasive way as possible. They may not be able to communicate if they are in pain.

The police have the power to stop people in the street and may ask straightforward questions about a person's name, address and where they are heading. However, police must caution an individual before they can question them about a suspected offence.
 
The police can search a person, their bag or vehicle if they have reasonable grounds for suspecting that they may find:

• stolen goods
• a knife or other weapon
• something that could be used to commit a crime; for example, someone else's credit card
• drugs.

Strip and intimate searches can only take place if a person is reasonably suspected to be hiding drugs or articles that may cause physical harm. An officer of the same sex must carry out strip and intimate searches. An appropriate adult must be present if the individual is aged under 17 or deemed to be a vulnerable adult.  A record of the search must be kept and a copy of this can be obtained from the police station if required.
 
If a person is arrested they must be informed of the reason. Reasonable force may only be used to detain someone if they attempt to resist or escape, which in the case of people with ASD is a possibility. For further information on this, see the Community Legal Service information leaflet called 'Dealing with the police'. www.clsdirect.org.uk/en/legalhelp/leaflet11_3.jsp

At the police station

Once a person has been detained, they become the responsibility of the custody officer. While detained at the station people have the following basic rights.

• An interpreter if English is not their first language.
• An appropriate adult; for example, a family member or someone from the appropriate adult scheme if the detainee is aged under 17 or is deemed to be a vulnerable adult by the Custody Officer. Appropriate adults are usually volunteers. Their role is to look after the welfare of the detainee. They are not able to offer legal advice, and usually do not have any training in ASD.
• Notification of the arrest to a relative or friend.
• The right to speak to a solicitor in private. If a person does not have their own solicitor they can speak to a duty solicitor. In many cases, people with ASD will refuse the services of a solicitor as they do not understand their role and become even more confused when another stranger becomes involved.
• A notice explaining further rights, called Criminal defence services at the police station and in court will be given to the detainee. A full copy of this can be downloaded from the following website. www.legalservices.gov.uk

Custody officers have to ask everyone that comes into their custody whether they have a special need. Most people with ASD will reply no to this question, as it is not specific enough for them to understand. By the time the individual is at the police station it is absolutely essential that the person with ASD, or a relative, has informed the police that the person has ASD, as custody officers are rarely able to recognise the condition. However, if the custody officer does suspect the detainee may have a special need, the following process will be triggered.

• The Force Medical Officer will be called (usually a local GP, often with limited knowledge of ASD) whose main role is to decide whether the individual is fit to be interviewed. 
• If the Force Medical Officer feels a psychiatric assessment is necessary, a duty social worker who is qualified to make an assessment under section 12 of the Mental Health Act will be called to make an assessment. Social workers often have only limited training in ASD and may not recognise if someone has the condition.
• If the social worker identifies any difficulties, two signatures will be required from psychiatrists in order to take the person out of the CJS and into the mental health system. This does not necessarily mean that the individual will be sectioned.

Police interviews

The police may interview a person about suspected involvement in an offence before any charge is made. The interview will be taped and the interviewee is entitled to have a legal representative present during the interview.

Due to the difficulties people with ASD have with communication and social interaction, any police interview can be extremely difficult. The person may appear very able, with a good or even exceptional vocabulary, and there may be no reason for an interviewing police officer to suspect that the interviewee requires special help. However, the officer may later find they receive blunt answers, the subject is changed and the individual is reluctant to make direct eye contact. The literal way in which people with ASD interpret language can lead to them giving incorrect answers or becoming anxious. All these things contribute to an assumption of guilt. Indeed many of the key interrogation techniques used by interviewers could inadvertently elicit false confessions from a person with ASD.
 
The following are suggestions for interviewing people with ASD in a manner that they may understand, and which should help elicit the correct response.

• Keep language that is clear, concise and simple.
• Use short sentences.
• Use the person's name at the start of each sentence so they know they are being addressed.
• Avoid the use of any irony, sarcasm or metaphors, as these will be taken literally.
• Ask specific questions that avoid ambiguity.
• Be aware that the person with ASD may simply repeat back the question they were asked.
• If asked a yes or no question, a person with ASD may repeat back the first or last word said with no understanding of the question. Dennis Debbaudt (2002) suggests asking a series of yes or no questions to determine the style and dependability of the response, and then following this up with the key yes or no questions you require an answer to.
• Allow the individual extra thinking time to process the information.
• Keep your facial expressions and hand gestures to a minimum.
• The use of visual supports may be helpful.
• The individual may need frequent breaks. Explain clearly that he or she is going to have a break for a specified amount of time and what will happen next.  Signs that the person is becoming anxious and in need of a break may include repetitive speech, hand-flapping or other repetitive movements, self-injury such as hand biting, shouting or physical behaviour.
• In all cases we would advise that a specialist in the field of autism, such as a clinical psychologist or psychiatrist, be contacted. The NAS Autism Helpline keeps a database of people who may be suitable to contact for this purpose.

Dennis Debbaudt (2002) has a useful chapter on the interview and interrogation of people with ASD in his book, which we would suggest police officers read before interviewing someone with ASD.

At the magistrates' court

• A hospital order.
• A guardianship order (where someone is appointed to act as a guardian for the individual).
• An absolute discharge.

In the Crown Court

• A hospital order.
• A guardianship order.

If the client is found fit to plead, the court proceedings will continue as usual.

The person with ASD as a witness or victim of crime

The suggestions for interviewing people with ASD mentioned previously will also be useful for interviewing someone with ASD who is witness to a crime. As a witness, a person with ASD is entitled to be accompanied by an appropriate adult during their interview.

All witnesses aged under 17 years, and people whose evidence is likely to be diminished because they have a mental disorder within the meaning of the mental health act 1983, or otherwise have significant impairment of intelligence or social functioning, or have a physical disability or physical disorder, are eligible to apply for special measures. These may include:

• screens, to ensure that the witness cannot see the defendant in court
• video-recorded evidence
• live TV links, allowing the witness to give evidence from outside the court
• clearing the public gallery of the court
• removal of wigs and gowns in court
• video-recorded pre-trial cross-examination
• allowing the witness to use communication aids.

Further information on these special measures is available from the Crown Prosecution Service (see contacts section below).
 
A scheme that uses intermediaries to help vulnerable witnesses is being rolled out across England and Wales from April 2008. An intermediary can help a vulnerable witness understand the questions they are asked and can then communicate the witnesss response. Intermediaries can help witnesses at each stage of the criminal justice process.
 
People with ASD who are victims or witnesses of crime may require specialist counselling. Voice UK and Respond are able to offer this service to some people with the condition. For more information, see the Useful contacts section below.

Complaints against the police

Useful contacts

Action for advocacy
020 78207868
www.actionforadvocacy.org.uk
Details of advocacy organisations in the UK.

4) Appropriate adult schemes

National Appropriate Adult Network
www.appropriateadult.com

5) Support for victims and witnesses

Victim Support
0845 3030900
www.victimsupport.org.uk
Organisation for anyone affected by crime.

Crown Prosecution Service
www.cps.gov.uk
020 77968500
Produces a useful leaflet on special measures in the CJS for people with disabilities.

Intermediaries Registration Board
020 70358461
intermediaries@cjs.gsi.gov.uk

6) Complaints against the police

The Independent Police Complaints Commission
90 High Holborn
London
WC1V 6BH
0845 300 2002
www.ipcc.gov.uk
Website includes some useful easy to read leaflets on making a complaint.

Useful reading and resources

Debbaudt, D. (2002). Autism, advocates and law enforcement professionals. London: JKP

Hollins, S. et al. (1994). Going to Court. London: Books beyond words
(A very useful picture book about being a witness in the Crown Court. The pictures suit any crime and any verdict.)

Hollins, S. et al. (1996). You're on trial. London: Books beyond words

Hollins, S. et al. (1996). You're under arrest. London: Books beyond words

Howlin, P. (1997). Autism: Preparing for adulthood. London: Routledge*

The National Autistic Society. (2008). Autism: A guide for criminal justice professionals. London: The National Autistic Society
(Available through the NAS website at www.nas.org.uk/nas/jsp/polopoly.jsp?d=118&a=5632)

Autism alert cards
A mini-information pack for situations when communication may be difficult. The pack includes a key facts leaflet about autism and a credit-card style insert for emergency contacts. *

Police and autism
www.policeandautism.cjb.net
American site with some useful information about avoiding unfortunate situations.

Criminal Justice System Online
www.cjsonline.org
Useful website outlining the work of the Criminal Justice System.

Community Legal Advice
www.clsdirect.org.uk
Free confidential and independent legal advice for residents of England and Wales.

Yourrights.org.uk
www.yourrights.org.uk/your-rights/index.shtml
Useful website from Liberty outlining the rights of victims, witnesses, suspects, defendants and prisoners, amongst others.

NSPCC
0800 0560566
http://www.nspcc.org.uk
Website of The National Society for the Prevention of Cruelty to Children.

Resources for teaching social skills

Gray, C. (2002). My Social Stories Book. London: JKP*
Her website also has some useful information on social stories http://www.thegraycenter.org

Howlin, P. Baron-Cohen, S and Hadwin, J. (1998). Teaching Children with Autism to mind read: A Practical Guide. London: John Wiley & sons Ltd*
 
Welton, J. (2004). What did you say? What do you mean? An Illustrated Guide to Understanding Metaphors. London: JKP*


Related Information sheets available from the Autism Helpline

1) Autistic Spectrum Disorders and prison

If an item is marked as available from the NAS please contact:
NAS Publications
Central Books Ltd
99 Wallis Road
London E9 5LN
Tel: +44 (0)845 458 9911
Fax: +44 (0)845 458 9912
Email: nas@centralbooks.com
Online orders: www.autism.org.uk/pubs

If you require further information please contact the
NAS Autism Helpline
Tel: 0845 070 4004. autismhelpline@nas.org.uk

Last updated: March 2008
© The National Autistic Society 2008

The National Autistic Society is the UK's leading charity for people affected by autism

Journalists: download our latest media release about Gary McKinnon's case in 'Related resources' at the bottom of this page.

Today, the National Autistic Society expressed great disappointment at the High Court decision that Gary McKinnon, a man with Asperger syndrome accused of hacking into US Government computer systems, should be extradited to the US. The ruling follows two judicial reviews where it was argued that his Asperger syndrome had not been given due consideration by those deciding on his case.

Mark Lever, chief executive of the NAS said:

"We are so disappointed for Gary and his family and so angry he is still in this position. The threat of extradition has been hanging over him for seven long years and sadly the nightmare continues. The NAS has campaigned hard for his extradition to be reconsidered in the light of his diagnosis of Asperger syndrome. We will continue to do whatever we can to keep him here in the UK and will support him in his appeal to the Supreme Court.

"People with Asperger syndrome are often far more vulnerable than initial appearances would suggest, frequently isolated, often bullied and sadly many experience severe mental health problems if they do not get the right support. We are extremely disappointed that the High Court has decided to continue with Gary's extradition despite these concerns."

The ruling today comes after two Judicial Review hearings examined whether the Home Secretary had been right in deciding to extradite Gary following his diagnosis with Asperger syndrome, and whether the Director for Public Prosecutions should have allowed him to stand trial in the UK.  The NAS supplied evidence about Asperger syndrome during the judicial review process, urging that his condition be taken into consideration.

The National Autistic Society has been campaigning to stop Gary's extradition since his diagnosis and has written to both the Home Secretary and the Attorney General. Thousands of NAS supporters have also voiced their support, writing to their MPs and signing a petition which was delivered to Downing Street by Garys mother earlier this month.

Gary now has the opportunity to appeal to the UK Supreme Court. The NAS will continue to campaign for his extradition to be stopped.

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Background to Gary McKinnon's case

Gary McKinnon was diagnosed with Asperger syndrome in August 2008 and stands accused of allegedly hacking into US Defense computer systems. As a result of Gary's late diagnosis, his Asperger syndrome was not taken into account in any legal proceedings prior to August 2008.

We have continued to express our concern that Gary's diagnosis be taken into consideration and took action by writing to both the Home Secretary when his diagnosis first came to light last year, and the Attorney General.

Asperger syndrome is a form of autism, a condition that affects the way a person communicates with and relates to others and the world around them. It is not uncommon for people with Asperger syndrome to develop single-minded, obsessional interests, and to be unaware of the effect their actions have on others.

The decision on Friday 31 July follows two judicial reviews of Gary's case. The first, heard on 9th June 2009, looked at the Home Secretary's decision to extradite Gary following his diagnosis. We submitted evidence during this judicial review explaining the nature of Asperger syndrome and the fact that diagnosis in adults is often late, as in Mr. McKinnon's case. This included information explaining that people with Asperger syndrome may be particularly vulnerable because of their difficulties with social awareness and communication, and may be susceptible to additional mental health problems as a result of their disability.

Earlier this year, over 4,000 supporters took part in our campaigner action to email the Attorney General asking that Gary be allowed to stand trial in the UK. His appeal to the Crown Prosecution Service was turned down in February 2009 and this decision was the subject of a second judicial review, heard on 14th July 2009.

You can read more about Asperger syndrome, and access information for criminal justice professionals on our website:

• more information about Asperger syndrome
• information for criminal justice professionals.