Understanding Why Individuals and Families with ASD Experience Crisis Situations

Crisis situations have escalated since the COVID-19 pandemic began. The questions and requests for help from families in crisis prompted me to do some research on this topic. I came across an excellent paper that was written for Autism Nova Scotia entitled In Crisis with Autism Spectrum Disorder – A Review of the Evidence. I would like to share some highlights and direct sections from this important paper that will shed some light on crisis situations and how medical health professionals and support organizations can help.

Why are individuals with ASD vulnerable to experiencing crisis situations?

Individuals with ASD may be affected by:

·         restricted, repetitive behaviours and interests (RRBIs)

·         impairments in social interaction

·         communication difficulties

·         intellectual disability

·         behavioral conditions (anger rumination)

·         mental health conditions (anxiety, OCD, depression)

·         lack of environmental accommodations (noisy environment, bright lights, overstimulation)

These issues add to the complexity of individuals’ experiences of daily challenges and the complexity of the supports and treatments they need in order to lead a fulfilling life. When a crisis does occur as a result of this, there is a lack of adequate services and supports to specifically address their needs that are often unique to this diagnosis.

The three most common precursors to a crisis are the severity of a problem, a need for increased service, and problems with service providers.

A lack of ASD appropriate crisis prevention and treatment services can result in a severe crisis. We need to know how to advise connected community services as well as how to empower families and people who support individuals with the right response at the right time before things escalate.

Understanding what crisis means to families of individuals with autism spectrum disorder, the stressors that cause a crisis, and family adjustment difficulties which can cause distress leading to a crisis, can help inform effective preventative and crisis services.

Why is it so difficult to respond to individuals and families in crisis?

Care needs vary widely depending on the situation because of:

·         complex 24/7 care delivered in-home or in residential settings

·         what clinical stabilization needs are required

·         supports varying widely based on age, developmental stage, and family resources

Needs vary widely – from a family who requires only respite and minimal home support to someone who may need to be relocated into a stabilization service for treatment. Others may need the expertise of clinicians on specific topics. There often needs to be a coordination of several services to work together to support an individual and those do not come together quickly or efficiently.

What constitutes a crisis?

A crisis has different meanings for different people because it is a subjective experience. What constitutes a crisis will depend on the person’s or people’s perception of the incident, setting, or circumstances. The ASD research literature shows that 80 -95% of families report experiencing a crisis.

Events or situations that bring on a crisis and cause family or support staff to call emergency services are due to challenging behavior that exceeds their ability to safely assist the individual with ASD to remain behaviorally stable. The problem is that emergency service providers require a high degree of understanding and experience with ASD in order to provide the right response and recommendation of services. This is where families get tied up because those required multiple services do not come together quickly.

Conceptualizations of Crisis

A recent study conducted with mothers of children diagnosed with ASD asked them to answer the following question, “People have different ideas of what a crisis is. In your own words, what would a crisis look like for you?” The analysis found that a crisis was as an interaction of issues in four major areas of family life: demands, internal capabilities, external resources, and subjective appraisal.

These four elements were described as follows:

1. Overwhelming demands were “chronic and acute… stemming from various factors: health problems, child emotional problems, caregiving, multiple stressors, school stress, death, life changes, child behavior, and family problems.”

2. Loss of internal capability was characterized as mothers’ perceptions of failing to cope with their life challenges, including supporting their child to cope or losing their ability to function or meet responsibilities, resulting in a loss of quality of life.

3. Difficulties with external resources including a lack of support, issues with accessing emergency services, financial problems, and losing resources or having absolutely no resources available to them.

4. Significantly negative subjective appraisals of their life status and current life challenges resulting in extreme stress and hopelessness.

For mothers of children with ASD, these four elements are not independent of one another, and they tend to interact with each other during experiences of a crisis. When families reach the tipping point and acknowledge they are in crisis, it is with these issues, concerns, stressors, and fears, that they seek emergency services.

How is the level of a crisis assessed?

There are only two assessments that are ASD specific:

1.  The Brief Family Distress Scale (BFDS) – provides a rapid assessment of the level of distress and crisis in families supporting a child or adult with ASD by using a 1 – 10 point rating scale. BFDS measures families’ distress and ability to cope with their child with ASD and family life.

2.  Mental Health Crisis Assessment Scale (MCAS) – asks parents to rate the severity of their children’s emotional and behavioural symptoms. Parents then select the behaviour they perceive as the most dangerous behaviour and rate their own ability to effectively manage this behaviour. The MCAS is a 28-item parent-report measure with three sections.

Both the BFDS and the MCAS provide valuable information that could illuminate areas of concern and help to focus treatment efforts of clinicians, support providers, and emergency services in a crisis. Not only do these tools identify the main difficulties families may be experiencing, but they also provide a snapshot of their capacity or lack of capacity to carry out treatment recommendations.

What are the challenges when using emergency care services?

Families and individuals experience many challenges in this setting due to the sensory environment (clinical with bright lights, action, sounds). Staff may not have the knowledge of ASD or dismiss the parents’ knowledge. Emergency services may also increase communication, sensory, and behavioural difficulties for a person with ASD due to the high-intensity situation and environment.

The care process can be stressful because of dealing with multiple staff, intrusive assessment and treatment procedures, having to move around the hospital for different assessments, and waiting for tests to be done.

Individuals with ASD are not always able to describe their symptoms or how they are feeling. Parents may be reluctant to talk about their child’s concerns with them present to staff. Communication difficulties, lack of interoceptive awareness, and the anxiety and stress of being in emergency services leads to misinterpretations or under-identification of health concerns.

Families of individuals with ASD report that during a crisis, interactions with emergency services are both necessary and harrowing, even when health care practitioners are well-versed in ASD. Diagnosing health and mental conditions is complex and challenging due to the overlap of symptoms or the unclear symptom presentation in ASD. Comorbid conditions may be a true comorbid condition just like it would appear in a non-ASD person or ASD symptoms may look like the comorbid condition but are better explained by ASD core symptoms – how do you separate the two?

What information would be helpful for medical staff in order to provide support?

These are some ideas developed for psychiatric unit teams in order to better understand an ASD patient’s needs. This would be helpful information to know for caregivers and support workers in a variety of settings. Having these handy on one-page sheet about the individual with ASD could help to ensure appropriate and effective ways to support.

Collecting Additional Patient Information to Produce a One-Page Tip Sheet for Unit Staff

• Communication strategies or devices

• Early signs of agitation (e.g., movements)

• Food, object, activity, and sensory preferences and aversions

• Transitional objects and strategies

• Calming items and strategies

• Specific information on dangerous behaviours and effective responses

In addition to collecting additional information and tip sheets, developing a plan with useful relational, behavioural, and communication interventions and strategies that can be shared with support staff and family members by:

• Applying communication strategies and techniques (e.g., minimizing verbal directions,  simplifying language, using visuals cues, allowing the individual time to process, giving space when the individual is agitated)

• Defining two behaviours that challenge

• Utilizing a behavioural plan

• Targeting medications and reducing polypharmacy (simultaneous use of multiple drugs)

• Providing visual supports for communication of schedules and routines with alternative/ preferred/or less preferred activities

• Providing a calendar with a road map of goals to use on the unit and when they go home

• Teaching feelings and coping strategies (modelling taking deep breaths/giving space) with designated quiet calming areas on the unit.

• Conveying successful strategies to support staff and parents

Experts applying these ASD specific intervention strategies emphasize that adopting these adaptations is critically important improving care in specialized and general psychiatric units.

The In Crisis with Autism Spectrum Disorder paper concludes with the following paragraph that sums up what we need to do to improve the response to families in crisis:

Regardless of the service delivery model, enhancing access to ASD-appropriate services is essential for the prevention, assessment, and treatment of behavioural and mental health conditions. Access to care and supports must be inclusive, timely, and community-based. The appropriateness of care is reflected in the ability of providers to meet the needs of an individual with ASD. Outreach, training, and collaboration are imperative for improving the appropriateness of services. Service systems must be accountable to everyone involved including practitioners and patients with ASD.