Autism and developmental disability: Management of distress/agitation

  • See also

    Emergency restraint and sedation- code grey 
    Emergency chemical restraint – medication options 
    Code Grey procedure 
    High dependency and special nursing care guideline

    Aim

    This aim of this guideline is to provide clinical practice tips for the inpatient management of anxiety, and agitation in young people with developmental disabilities (including autism) who may require medical or surgical care at RCH.

    Background

    Studies show that children and teenagers with autism spectrum disorders (ASD) and other developmental disabilities are 10 times more likely to be admitted to hospital for medical illnesses and complaints. (Lokhandwala 2012, Leonard 2005)

    Behaviour and communication difficulties act as significant barriers to these children accessing hospital care. Children with Autism with intellectual disability (ID) have a higher incidence of behavioural problems compared with children with ID without Autism (Scarpinato 2010).

    These children are varied in their levels and types of developmental problems, in their psychomotor skills, communication needs and in the presentations of their behaviours and emotional distress.

    Patient rights

    Children and teenagers with autism spectrum disorder, intellectual and other developmental disabilities have the same rights of access to health care as the general population. These children and young people often have additional undiagnosed or poorly treated medical and psychiatric conditions. They should be treated with the same dignity, respect and understanding that is shown to typically developing patients.

    Assessment

    Ideally completed prior or admission-to documented the medical record.

    To ensure a successful inpatient experience for the patient and family, a high quality preadmission or at admission assessment is vital. At RCH, preadmission can occur in several ways, either by the allied health or nursing staff through the admitting medical or surgical team and through consultation with the departments of Developmental Medicine, General Medicine and Mental Health.

    The ultimate responsibility for collating this information (that may obtained by medical, nursing and allied health staff) rests with the resident or registrar of the admitting team. As appropriate, information must then be shared with nursing and allied health staff.

    Referrals to Educational Play Therapy (for assistance in planning procedural support) and Speech Pathology (to assess and plan for communication assistance) should be considered.

    A history of the young person’s level of intellectual and physical disability (if any), their functional capacity, skills and abilities and relevant past history must be carefully taken. Information from the family and their local allied health team provides important information on the child/adolescent’s presentation and how best to manage their communication and behaviour over their inpatient stay.

    Communication

    How does the individual express their needs/desires?
    How does the individual say yes/no?
    How does the individual express pain?
    How does the individual generally comprehend communication – verbal/non-verbal/visual?
    How does the individual understand new information or instructions?
    How does the individual understand the passage of time?

    Use of augmented communication aids such as Picture Exchange Communication System (PECS), communication book/board or communication Apps on iPad must be ascertained. Parents should be reminded to bring a child’s augmented communication system to hospital.

    If a young person’s mode/method of communication is unable to be ascertained, or established assistive or augmentative communicative devices cannot be accessed, a referral should be considered to Speech Pathology for assessment and management.

    Individuals who have communication impairment are at risk of interaction and behavioural difficulties due to failure in communication. Consider their capacities of comprehension and expression in what may be stressful environments and interactions.

    Routines

    Routines enable young people with developmental disabilities to manage their internal states of distress. They can experience significant distress upon changes to these routines. This may lead to the young person being seen as uncooperative or difficult. They might, for instance, become very anxious and disruptive when plans are changed or if they are required to wait for procedures.

    Some children will develop intense interests, which they prefer to engage with most of the time and can become distressed if interrupted. Ascertain what the young person does during leisure periods, what they enjoy doing and accommodate what is possible within an acute ward setting.  

    Sensory sensitivities

    Sensory sensitivities to sounds, light, colours, textures, loud volume, unexpected noises, smells or and touch are common. Patients may be hyper-sensitive or hypo-sensitive to these stimuli. These may trigger agitation but knowledge of the sensitivities may help also to allow preventative measures to be put in place. This information can be gained from their parents or community occupational therapist. If the child/adolescent is an inpatient and difficulties arise in regard to their behaviour in regard to sensory inputs, the RCH OT department can provide consultation to promote a supportive physical and sensory environment.

    Past history of agitation or aggression

    Enquire about past history of agitation, aggression, or self-harm, including triggers and helpful measures used in the past. Seek history of other disruptive behaviours such as head banging, screaming, rocking, flapping, hand wringing or repetitive self-stimulating vocalisations.

    Find out if there is an existing behaviour management plan and obtain a copy.

    Review the past history of behaviours during hospitalisations or visits to outpatient clinics, emergency departments, to the GP. This will include checking previous RCH history on the electronic medical record.

    Look for variations in the behaviours between the home, school and other settings such as respite care. What strategies are used to manage at home and school? Ask which individual has the most calming influence and facilitate their involvement in helping the young person settle into hospital.

    Find out what the young person has been told about coming to hospital and their level of understanding of the same. 

    Questions parents and carers  

    1. What is the best way to comfort your child?
    2. Does your child enjoy deep pressure or squeezes?
    3. Does your child avoid eye contact or being in close proximity to others?
    4. How should we communicate with your child?
    5. What are your child’s favourite foods or beverages?
    6. What type of toys or activities does your child prefer?
    7. Does your child have difficulty with transitions if so what tends to help?
    8. Does your child respond to visual cues? Would a video or picture example of a procedure help?
    9. What was your child’s last hospital or doctor visit like? What parts were most difficult?
    10. How can we make this admission easier for your child?

    (The Autism Intervention Centre at the Rady Hospital San Diego USA (Schwartz N 2013))

    A useful guide to the young person’s comprehension level is to ask his/her parents: “From past experience how would you let the young person know they need to get ready for any activity/procedure?”

    Young people with developmental problems have a right to information about their care and treatment presented in a way that they can understand or make adequate sense. This has to be weighed against the need to avoid harm from avoidable emotional distress. Discuss with a child’s parents/guardians their expectations regarding this communication during your admission assessment.

    Role of the Primary Paediatrician

    The young person’s Developmental Physician or General Paediatrician and nursing care manager must be contacted to get additional information and be involved in important meetings to maintain a sense of consistency and familiarity to the young person and their carers/family.

    Management

    Inpatient Care aimed at preventing or minimising agitation aggression

    Written Inpatient Care Plan

    • Based on the information obtained from the above questionnaire, prepare a management plan and place that in a prominent location in the patient file for all staff to access.
    • Provide a plan in a form that the patient can understand e.g. use visual cards, photos, sign or gesture or simple instructions.

    Maintain a low stimulus environment

    • Where possible admit to a room with least stimulus whilst maintaining safety.
      Attempt to make the room a familiar environment as best as possible bringing in toys, bed sheets, pillows, utensils. Use music, DVDs, iPad if they are found to be helpful in keeping the young person calm and occupied. Consider items that will support the patient’s sensory processing, catering for individual preferences (e.g. lighting, comfort toys/items, ability to incorporate tactile or movement activities into their daily ward-based routine).
    • Limiting the number of professionals the young person needs to interact with
    • Minimise the number of staff attending the room during ward rounds.

    Plan ahead of time carefully medical or surgical procedures

    • Where possible minimise delays and prioritise these young people on any operating or anaesthetic lists to minimise waiting times and distress. Also where possible, individualize the admission process and anaesthetic plan with admission and early discharge on the day of surgery. Where the young person is able to understand, explain the plans to them using techniques that work for them such as a visual board or iPad or PECS (Educational Play Therapy and Speech Pathology departments can assist with obtaining resources such as these). Allow time for the young person to ask questions or express themselves. Oral midazolam is an effective premedication for mild anxiety or distress and agitation. Oral ketamine is the more useful for moderate to severe level problems. Antiemesis prophylaxis and where it is no longer required removal of the IV cannula before return to the ward are also seen as important steps to decrease stress and smooth the postoperative phase.
    • Referrals to the Educational Play Therapy department can help promote coping with individualised preparation available for medical or surgical procedures (including surgery, imaging and pathology).

    Avoid unnecessary examinations and interventions (vital signs, blood draws).
     

    Liberalise Diet

    • Try to liberalise diet where possible such as allowing food from home.

    Explain Procedures

    • Have the necessary equipment prepared and ready
    • If available show pictures of interventions (e.g. taking temperature, having blood pressure taken). This helps with some young people to allow them to hold the instrument first in their hands.
    • Allow the patient to examine any instruments him or herself first when it is safe to do so before use (e.g.-an otoscope). This gives the young person familiarity with the instrument to be used and reduces the anxiety of an unknown object used on their body.
    • Model parts of the exam on trusted adult or doctor/nurse.
    • Visual cues are ideally a part of all communication with young people
    • Contact Educational Play Therapy for additional support.

    Strategies during a procedure:

    Carers can suggest useful strategies for the individual which can include:

    • Distraction techniques
    • Allowing the young child to sit in their parent’s lap if they are comfortable, rather than moving to an examination table
    • Allow the patient to remain in a sitting position rather than lying prone where possible
    • Communication with the young person before each step of the exam
    • Using particular words which the young person can relate to or understand (e.g. “It’s finishing” or “It’s over” or counting to ten).

    Discharge Planning

    • Ensure through team planning and communication with parents and local therapists that the patient can have as short an inpatient stay as possible. This involves knowing the predicted post-medical intervention/post-surgical pathway and being prepared for discharge. Referral to Wallaby (HITH) or post-acute care can facilitate a timely discharge, which can return the patient to their familiar environment and reduce distress.

    Psychotropic medication use in non-acute preemptive management of agitation anxiety during hospital visits or before procedures during an inpatient stay

    When considering the type of medication consider the following:

    • Patient’s current medications (with specific attention to drug-drug interactions)
    • Contraindications in the medical and behavioural history, and individual patient challenges
    • Specific procedure/visit considerations (e.g. invasiveness, duration)

    It is recommended that the selected anxiolytic medication be trialled by the family at home prior to the day of the visit to hospital or by the team in the hospital prior to the day of the procedure so as to assess appropriate timing of dose and to observe for possible adverse effects. The lowest possible therapeutic dose of the anxiolytic medication used is preferred to avoid adverse effects

    For the pre-emptive management of anxiety and agitation

    Name/Formulations

    Dose

    The lowest possible therapeutic dose of the anxiolytic medication used is preferred to avoid

    adverse effects.

    Onset of Action Duration of Action When to redose Possible Adverse Effects

    Clonazepam

    Tablet:

    0.5 mg, 1 mg

    Orally disintegrating tablet:

    0.125 mg, 0.25 mg, 0.5

    mg, 1 m

    Liquid (Compound):

    0.1 mg/ml

    < 10 yrs: 0.125 mg

    to 0.5 mg

    ≥ 10 yrs: 0.5 mg to

    1 mg

    20 to

    60

    minutes

    6 to 12 hours 45 to 60 minutes Ataxia, somnolence, abnormal movements
    OR          

    Lorazepam

    Tablet:

    0.5 mg, 1 mg, 2 mg Liquid:

    2 mg/ml

    > 13 years of age

    0.02 to 0.05 mg/kg (max dose 2 mg)

    20 to

    30

    minutes

    6 to 8 hours 45 to 60 minutes Asthenia, dizziness, vertigo, blurred vision
    OR          

    Risperidone

    Orally disintegrating tablet:

    0.5 mg, 1 mg, 2 mg, 3 mg, 4 mg

    ≥ 5 years of age:

    15 to 20 kg: 0.25 mg

    ≥ 20 kg: 0.5 mg

    <5 years of age:

    No dosing recommendations available, use with caution

    60 minutes Up to 24 hours 1.5 to 2 hours QTc prolongation, weight gain, constipation, dry mouth, dizziness, EPS

    Courtesy: Best Evidence Statement Cincinnatti Children’s Hospital, Pre procedural Anxiolytic Guideline 2011


    Management of an acute episode of agitation / aggression

    • Include carer in management if this is known to be calming
    • Consult written inpatient care plan for particular soothing interventions for the patient
    • Consider an organic cause
    • Where there is a new onset of or a recent increase in agitation and aggression look for causes of pain or physical discomfort (e.g. teeth).
    • Also consider recent changes in doses and types of psychotropic and antiepileptic medications. Some antibiotics too cause lowered mood and irritability - in these instances, consult Pharmacy medicines information.
    • Enquire about recent onset of psychiatric symptoms, such as new onset of sadness or tearfulness.

    The role of medication

    • Consult with the Mental Health team before prescribing: Telephone Intake 1800 445 511 Monday to Friday 9am-5am and Switchboard 91 for Psychiatry Registrar on duty after hours.
    • Refer early to the Mental Health team for a review of psychotropic medications and advice regarding behaviour management on the ward, particularly if past history of aggression/agitation.
    • Where medications are used to treat agitation either as routine or as a PRN, ascertain which medications have been effective in the past, and the required doses.
    • Young people with developmental problems associated with congenital or acquired brain injury may have a higher incidence of adverse effects with psychotropic medications such as increased paradoxical agitation with benzodiazepines, and extra pyramidal and other neurological adverse effects to antipsychotic medications. Thus find out about adverse effects to past medication use.
    • Medications that are approved/commonly used to treat associated symptoms:
      • Atypical antipsychotics for the treatment of agitation, aggression and irritability (FDA-approved: Risperidone (0.02-0.08 mg/kg/day- max of 4 mgs a day); Aripiprazole)
      • Clonidine for the management of mild anxiety
      • Benzodiazepines like Clonazepam, Lorazepam or Diazepam for the management of moderate to severe anxiety.
      • SSRIs for the treatment of repetitions/compulsions (off-label only: fluoxetine, citalopram)
      • Stimulants for the treatment of hyperactivity (same approved indication as for ADHD: methylphenidate)

    Patients with developmental disabilities may require much lower or larger doses than commonly prescribed.

    Severe acute agitation aggression

    Follow  Emergency restraint and sedation – code grey CPG

    After any acute incidence of aggression, review the incident carefully to identify potential triggers and minimise them for the future. Complete VHIMS report. Debrief staff where necessary involving the Employee Assistance Program (EAP).

    Resources

    • The Help Autism Now Society provides information to help children prepare for treatment, including online story books on getting blood drawn and visiting a doctor’s office ( www.helpautismnow.com)
    • The Autism Intervention Center at Rady Children’s Hospital San Diego has an online section of physician resources that includes a resource guide, screening tools and links to other websites ( www.rchsd.org/autism)
    • Parent survey to inform inpatient care plan (Kopecky et al)
    • The Educational Play Therapy department on the RCH website has further information about service provision and contact information.

    References

    • Bebbington A et al: Hospitalisation rates for children with intellectual disability or autism born in Western Australia 1983–1999: a population-based cohort study. BMJ Open 2013;3:e002356 doi:10.1136/bmjopen-2012-002356
    • Best Evidence Statement on Pre procedural anxiolytic Adaptive Care Team (ACT) / Special Needs / Pre-procedural Anxiolytic / BESt 064 March 10th 2011
    • Brereton AV, Tonge BJ, Einfeld SL: Psychopathology in children and adolescents with autismcomparedtoyoung people with intellectual disability. J AutismDev Disord 2006;36:863–70.
    • Kopecky, K et al. The Needs of Hospitalised Patients with Autism Spectrum Disorders: A ParentSurvey CLIN PEDIATR 2013 52:652
    • Leonard H, Petterson B, De Klerk N, et al:. Association of sociodemographic characteristics of children with intellectual disability in Western Australia. Soc Sci Med 2005;60:1499–513
    • Lokhandwala T, Khanna R, West-Strum D: Hospitalization burden among individuals with autism.J Autism Dev Disord 2012;42:95–104
    • Scarpinato N, Bradley J, Kurbjun K, et al: Caring for the child with an autism spectrum disorder in the acute care setting. J SpecPediatrNurs 2010;15:244–54.
    • Shwartz N: Approaches to the Management of Children with Autism Spectrum Disorders in the Pediatric ED & Medical Units: A presentation to the Rady Hospital Professional Development Seminar March 2013
    • Van der Walt JH et al: An audit of peri operative management of autistic children. Paediatric Anaesthesia 2001 Jul; 11(4):401-8 2001

    Written June 2015. For review March 2018.   

    Authors: Chidambaram Prakash; Gabrielle Hart; Ric Haslam (RCH Mental Health)
    Please send any feedback to chidambaram.prakash@rch.org.au

    Acknowledgements: Prof Katrina Williams (RCH Developmental Medicine), Robyn Clark (RCH Social Work), Bernadette O’Connor (Allied Health), Lisa Vale (Occupational Therapy), Fiona Zandt and Frances Saunders (RCH Mental Health Specialist Autism Assessment Team), Helen Codman RN and Bec McGrath RN Clinical Support Nurses Sugar Glider ward, Jess Ellis RN Clinical Support Nurse Cockatoo Ward, Stacey Richards RN Clinical Support Nurse Platypus ward and the RCH Educational Play Therapy department.