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 individual's 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 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 patient's 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 patient's 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 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).
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.
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, which 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 with 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 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, 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).
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.
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Catatonia section by Dr Amitta Shah
Documents to download
A guide to the Mental Capacity Act 2005 (PDF)
This booklet explains how the Mental Capacity Act 2005 can help adults with autism to plan ahead and to make decisions - or how other people can be nominated to make some decisions on their behalf.