From Guidelines for Managing the Client with Intellectual Disability in the Emergency Room (© 2002)
1.1 Optimizing the clinical encounter
You should be aware of the following:
Persons with intellectual disabilities* vary greatly in their ability to understand and communicate their needs, discomforts and concerns. You will therefore need to adapt your approach to each client's level of functioning and understanding.
If the client is behaving disruptively, begin by meeting briefly with the caregivers to inquire about their client's level of functioning and to get advice about how best to meet and interact with their client. Find out about any circumstances that might be specifically upsetting for that individual (e.g., being asked too many questions; being in a noisy/busy environment; someone moving too close to them; seeing reflecting surfaces, such as eyeglasses).
Many individuals may be unable to communicate verbally but will be aware of non-verbal behaviours in others and are often sensitized to negative attitudes others have toward them. Some individuals depend on others to help modulate their emotions and will quickly pick up fear and anxiety in you. A warm, accepting, calm and reassuring attitude will help the client feel more relaxed.
The ER is generally a strange and unfamiliar environment for anyone. For persons with intellectual disabilities, the experience may be particularly scary because they may not understand what is happening around them. Getting to the ER may also have been traumatic, both for the client and his or her family. Waiting can be anxiety-provoking and contribute to behavioural disturbances. Take a moment to explain to the client and his or her caregivers the reason for the wait. If the wait is longer than you expected, check in from time to time to reassure the client. This will contribute to a more effective interview.
Always check to see if this is the client's first visit to the ER and whether there is previous information on the client. If the client has been to the ER before, find out what worked and what did not work.
Find out if a proactive crisis plan has already been set up by caregivers in the community and whether caregivers have brought a letter from the client's physician outlining this plan.
Remember that appearances may be deceptive. Individuals with intellectual disabilities may appear to be hearing impaired or mute when this in fact is not the case. Overheard comments about them may exacerbate the presenting problems.
Assessing a client with an intellectual disability takes time. Research indicates that the process may take four times longer than the time required for someone without such a disability.
Practical tips on conducting the interview:
Try to make the individual as comfortable as possible.
- Familiarity helps. Suggest that someone familiar to the client (e.g., caregiver) remains present.
- Use suggestions previously identified by the caregiver to help the client be more at ease.
- Encourage use of "comforters" (e.g., Does the individual have a favourite item he or she likes to carry or does the client like to engage in self-soothing, such as rocking or standing?).
- Try to find a quiet spot, without interruptions.
- Try to establish a positive relationship with the client:
- Be interested in a precious object the client is clutching.
- Show warmth and a positive regard.
- Be sensitive to cues and tone of voice.
- Be aware of any non-verbal messages you are giving that the client may generalize to a previous experience (e.g., Based on past experience, the client may respond idiosyncratically to a head nod or shake, or to your cologne/perfume).
- Avoid direct questions. The client may experience these questions as intimidating or may just say yes to please.
- If the client seems fearful, give him or her time to size you up.
- Respect personal space.
- Ask permission to proceed prior to any intrusion of personal space, and explain and forewarn the client about what to expect from procedures that may need to be done immediately. Ask caregivers whether protocols have already been established for some procedures (e.g., venepuncture) and follow these. Provide reassurance during the procedure or provide support according to the protocol already established by caregivers.
Find ways to communicate effectively:
- Use simple words.
- Speak slowly.
- Do not shout.
- Pause. Do not overload the individual with words.
- Be sensitive to the individual's non-verbal cues and adjust your behaviour accordingly. For example, if the client shows fear in response to your approach, consider what might be contributing to this fear (e.g., reflection from your eyeglasses, white coat, stethoscope) before approaching further. Modify your approach as required (e.g., take off white coat, enlist the participation of familiar caregiver).
- Use visuals (e.g., drawings).
- Use gestures.
Remember that persons with intellectual disabilities have a variable and limited ability to interpret their own internal cues and may not be able to give you an accurate picture of their internal state. Involving caregivers who know the individual well may help you to better understand the client's subjective experiences.
1.2 Biopsychosocial understanding
The psychiatric assessment of the individual with an intellectual disability involves systematically applying a biopsychosocial approach. Expect the presenting problems to have multiple and complex etiological and contributing factors. Be systematic in taking a history. Be sure to assess the influence of causes other than psychiatric disorder for the referral concerns.
The overall goal is to understand contributions from:
- medical disorders (e.g., constipation, toothache, earache, reflux oesophagitis, bone fractures, urinary tract infection, other sources of pain or bodily discomfort)
- problems in expectations and supports as individuals with intellectual disabilities are much more dependent on external structures. Emotional problems often arise when expectations and supports change (e.g., recent move; change in staff: staff turnover can be very high in some group homes; change in daily life schedule, such as start of school/work; change in work activities) or are inappropriate (e.g., unrealistic expectations about completing tasks or travelling independently).
- emotional upsets (e.g., response to co-resident or staff leaving group home, illness in client or significant other, seasonal pattern/anniversary reaction, trauma, abuse or triggers to past abuses). Note that grief can be delayed.
- new onset psychiatric disorders and/or ongoing (chronic) psychiatric conditions. Adjustment, mood, anxiety and post-traumatic stress disorders are the most frequent new onset psychiatric disorders. Autism is the most frequent chronic comorbid psychiatric disorder across the range of functioning. Stereotypies and self-injurious and compulsive behaviours are often seen as chronic comorbid conditions, especially in lower functioning individuals.
In determining the relative contributions of circumstances 1 to 4, as listed above, all the basic areas of inquiry need to be examined: client's main concerns; caregivers' main concerns; history of concerns with an emphasis on recent life events and changes; medical history; medication history; allergies; family psychiatric history; personal, developmental and social history.
It is also important to gather more detailed information on the client's usual level of functioning (baseline) and supports prior to this episode of disturbance. Seek further information about:
- cognitive functioning (e.g., reading, writing and math grade levels; school history; results of previous psychological assessments; information about verbal and non-verbal IQ/functioning)
- adaptive functioning (e.g., level of independence in daily life skills: amount of support needed around hygiene, dressing, eating and preparing meals; whether the client can initiate his or her own activities, be left safely alone at home and travel independently)
- communication (e.g., level of receptive understanding and expressive language)
- social functioning (e.g., abnormalities in social response, eye contact, facial expression, the use of gesture to communicate, social initiation and reciprocity that might indicate a comorbid autism spectrum disorder)
- residential circumstances (e.g., living with family or in a group home, and level of support in these settings) and
- daily activity (e.g., attending school, day centre or other organ-ized activities, and supports in pursuing these).
At the end of this inquiry, you should try to evaluate whether the expectations of the client, and the supports provided, are appropriate given the client's level of functioning and recent circumstances. For example, are you sure that caregivers understand the challenges the client has to face on a daily basis? (e.g., If the client has a hearing impairment, have appropriate adaptations been made in the client's physical and social environment?)
In summary, assessing persons with intellectual disabilities involves not only a standard psychiatric assessment, but also a systematic approach designed to identify the contributions of other circumstances to the behaviours of concern.
1.3 Assessing symptoms and behaviours that may point to a new onset psychiatric disorder and assessing for the presence of ongoing (chronic) psychiatric conditions
It is first important to determine whether there has been a significant change in baseline behaviours and functioning. An episode (or episodes) of changed behaviour can be identified as follows*:
Determine usual behaviour and usual level of functioning (baseline) prior to onset of new disturbance in terms of: self-care, interest/involvement in school, work, play/leisure, social involvement, initiative, level of supervision required.
a. there has been a change in behaviour outside the range of normal variation for the individual, lasting at least one week and a definite diminution in level of functioning in at least two of the following areas: self-care, interest/involvement in school/work, play/leisure, social involvement, initiative, need for change in supervision/placement
b. psychotic symptoms (e.g., delusions, hallucinations, catatonia) are, or have been, present and have lasted at least three days. (Note that it is difficult to diagnose psychotic symptoms in persons with an IQ below 50.)
*Adapted from: Bolton, Patrick & Rutter, Michael. (1994). Schedule for the assessment of psychiatric problems associated with autism (and other developmental disorders) (SAPPA): Informant version. Cambridge, U.K.
Provisional psychiatric diagnosis
If the referral concerns or behaviour disturbance meet criteria for an episode of change, then an episode of psychiatric disturbance is established. The next step is to try to match this episode of psychiatric disturbance to a DSM-IV diagnosis. This is frequently difficult, particularly with lower functioning individuals, as subjective experiences needed to establish a DSM-IV diagnosis may be unavailable. From the clinical information available, generate the best provisional psychiatric diagnosis for the episode of psychiatric disturbance.
Comorbid psychiatric conditions
Document baseline self-injurious behaviours, tics, stereotypies, obsessive thoughts and compulsive behaviours, levels of attention, hyperactivity, impulsivity, fears and phobias: these may represent comorbid chronic conditions. Ask whether there have been any changes (i.e., increase in severity and/or frequency) in these comorbid conditions associated with referral concerns/behaviour disturbance. Documenting whether any comorbid conditions are present at this stage is crucial, as these conditions may also arise from the side-effects of medications used to manage the crisis, or to treat an underlying psychiatric disorder.
Note: In Ontario, Canada, where the authors work, a person with intellectual disability and mental health disorder is referred to as having "dual diagnosis" while "concurrent disorder" refers to a situation in which the person has both a mental health and substance use disorder.
1.4.1 Understanding significant changes in behaviour
Significant behavioural changes may result from medical or dental disorders, problems in expectations or supports or emotional upsets. It is important to understand the contribution (if any) of such circumstances to the behaviour disturbance before making a psychiatric diagnosis or concluding that the problem is psychiatric.
1.4.2 Understanding aggression
Aggression is often the reason for the visit to the ER. Aggression of any severity can be the result of any of the four problem areas identified in Section 1.2. The severity of the aggression does not necessarily indicate the seriousness of the underlying cause of the aggression.
1.4.3 Diagnostic limitations in the ER
The ER is not the place to make definitive psychiatric diagnoses; however, provisional diagnoses based on clearly documented descriptions of behavioural changes are appropriate. Indicate clearly on your evaluation/assessment report that the diagnosis is provisional and needs to be reviewed when the crisis has abated. This is necessary as a psychiatric diagnosis made from a brief assessment can stick for years or even decades, and can result in the client being prescribed inappropriate medication for lengthy periods with considerable morbidity. Your recommendations should include a clear outline as to follow-up and re-evaluation of diagnosis and treatment.
1.4.4 Diagnosing psychosis
"Psychotic" behaviour in persons with intellectual disabilities is more often due to their being overwhelmed with life events than to an actual psychotic disorder. For example, due to limited cognitive function at baseline, stress can fragment thought form in a way that may appear psychotic, or the client may express primitive thoughts that sound delusional but actually relate to poor coping more than to frank psychosis. If the client is overwhelmed, treatment involves identifying and attending to the causative life events. However, if it is true psychosis, then antipsychotic treatment is required.
Note that in an emergency situation, medication, along with other interventions, may be required for immediate containment even if no psychosis is diagnosed. It is important therefore that you indicate clearly on your evaluation/assessment report that medication was used to manage the emergency situation (it does not imply a diagnosis), and outline specific plans for follow-up diagnostic appraisal so that the need for medication can be reassessed.
Interventions in the ER
Assessing for a psychiatric disorder in persons with intellectual disabilities presents many challenges and requires obtaining detailed historical information as well as a multidisciplinary approach. This includes drawing on not only the perspective of psychiatry, but also input from other disciplines, such as psychology, communication therapy, behaviour therapy, nursing, genetics and medicine, including neurology.
This diagnostic process can start in the ER but avoid making definitive psychiatric diagnoses at this time. Instead, provide careful documentation of whatever history is available, along with observations of behaviour, and response to interventions in the ER. Ensure that this documentation is available to the team who will provide further psychiatric assessment when the client is triaged. The ER provides an important opportunity to rule out possible medical disorders underlying the behaviours of concerns and also the opportunity to observe the client in a more structured environment.