Care of the Patient With an Autism Spectrum Disorder
Care of the Patient With an Autism Spectrum Disorder
Box 1 summarises essential strategies for obtaining the history, physical examination and laboratory/diagnostic imaging evaluation and completing therapeutic interventions for the adult or paediatric patient with an ASD. The initial step in caring for patients with an ASD is identifying a location most conducive to patient evaluation and limiting overstimulation of the patient. Common distraction techniques used by care givers, such as the use of television, movies or toys, should be embraced. Advanced preparation to remove unnecessary clutter and loud equipment from the examination room prior to evaluation can help reduce sensory overload for the patient with an ASD. Asking care givers if the patient dislikes being touched in a certain manner or dislikes certain textures or smells can help the general physician avoid noxious triggers to the patient. Physicians caring for patients with an ASD in the acute care setting may also get information regarding behaviours, preferences and activities of their patient from the outpatient provider. Communication of these preferences to the entire staff caring for the patient will also help maintain consistency throughout the visit to give the highest chance of successful evaluation.
Given the limited communication capability in most patients with an ASD, care givers need to be empowered to be part of the medical team so that a complete history is obtained. Care givers of patients with an ASD may feel very passionate about their use of alternative therapies and may resent any questioning of these interventions. Approaching care givers in a non-judgemental fashion is therefore essential. Among the many alternative therapies tried on patients with an ASD, the more common include dietary supplements (vitamins, proteins/amino acids, fatty acids, digestive enzymes, minerals), hormones (melatonin, secretin) and modified diets (primarily gluten-free and casein-free diets. Other alternative therapies used on patients with ASD include chiropractic, acupuncture, chelation, neuro-feedback and hyperbaric oxygen. Understanding which alternative therapies are being used can direct the general physician to look for potential side effects from these therapies (Table 2).
Patients with an ASD receive non-traditional therapies and may not have received standard vaccinations in childhood. This may increase the risk of particular infectious diseases (tetanus, mumps, measles, rubella, etc) not commonly seen in the general population for which general physicians should have heightened awareness when seeing a patient with an ASD.
The physical examination requirements for a patient with ASD are no different than for other patients. However, limitations in communication may not allow the general physician to get an accurate localisation and description of symptoms, especially pain. Working with care givers to use words familiar to the patient with an ASD and as 'interpreters' of the patient's verbal and physical responses to the exam is essential. Extra attention must also be given to the use of sign language and other communication techniques employed by patients with an ASD with verbal impairments. Traditional pain scales that rely on self-reporting of pain may be less effective with patients with an ASD. Scales that incorporate care giver-identified child-specific pain behaviours may be more effective in paediatric patients with an ASD. Nader et al reported that autistic children display similar responses to pain as non-autistic children. They noted increased facial expression of pain when compared with a matched control population. Therefore, assessing for pain using non-traditional methods may be required. Techniques used to help patients with an ASD tolerate the invasive parts of the physical exam include extensive and honest communication regarding what you are doing. This may be best done with step-by-step explanation or accomplished after demonstrating the exam or procedure on a care giver or stuffed animal, as age appropriate. When discussing painful procedures, such as lab draws, sample collection or imaging studies, it is best to describe each step of the procedure prior to starting and allow the patient to touch and feel all the equipment that will be used. It is also useful to reward good behaviour or cooperation with the procedure. Simple rewards, such as stickers or books for paediatric or adolescent patients with an ASD, respectively, can be helpful when trying to obtain buy-in from a patient with an ASD.
When distraction techniques prove to be insufficient, sedation may be employed. In our experience with the ASD population, the most commonly used drug class for anxiolysis is benzodiazepines (oral midazolam or intramuscular/intravenous lorazepam at standard weight based dosing). Procedural sedation can be effected most easily with intramuscular or even oral ketamine given the low side effect profile and lack of need for intravenous access. It is controversial as to whether premedication with midazolam is needed to avoid emergency reactions from ketamine sedation, but the possibility should be discussed with the patient and care giver where appropriate.
When administering treatments to patients with an ASD, extra time and attention need to be spent to ensure that barriers such as oral and textural aversions are managed. Parents anecdotally report difficulty getting patients with an ASD to take medications, and physicians often forget to take into account taste when treating patients with an ASD. Compliance with other forms of treatments, such as splints, casts, sutures and bandages, may be challenging in patients with an ASD who frequently have tactile sensitivities. Techniques that may prove useful focus on identifying and reducing exposure to tactile stimulations that bother the patient as well as spending extra time to allow exposure to the supplies being used. Covering splints or bandages with less threatening stickers or drawings in paediatric patients with an ASD can also be useful. Engaging the care giver with similar splints or casts may also reduce the threat in the eyes of the patient with an ASD.
Approach to the Evaluation of the Patient With an ASD
Location of Encounter
Box 1 summarises essential strategies for obtaining the history, physical examination and laboratory/diagnostic imaging evaluation and completing therapeutic interventions for the adult or paediatric patient with an ASD. The initial step in caring for patients with an ASD is identifying a location most conducive to patient evaluation and limiting overstimulation of the patient. Common distraction techniques used by care givers, such as the use of television, movies or toys, should be embraced. Advanced preparation to remove unnecessary clutter and loud equipment from the examination room prior to evaluation can help reduce sensory overload for the patient with an ASD. Asking care givers if the patient dislikes being touched in a certain manner or dislikes certain textures or smells can help the general physician avoid noxious triggers to the patient. Physicians caring for patients with an ASD in the acute care setting may also get information regarding behaviours, preferences and activities of their patient from the outpatient provider. Communication of these preferences to the entire staff caring for the patient will also help maintain consistency throughout the visit to give the highest chance of successful evaluation.
History
Given the limited communication capability in most patients with an ASD, care givers need to be empowered to be part of the medical team so that a complete history is obtained. Care givers of patients with an ASD may feel very passionate about their use of alternative therapies and may resent any questioning of these interventions. Approaching care givers in a non-judgemental fashion is therefore essential. Among the many alternative therapies tried on patients with an ASD, the more common include dietary supplements (vitamins, proteins/amino acids, fatty acids, digestive enzymes, minerals), hormones (melatonin, secretin) and modified diets (primarily gluten-free and casein-free diets. Other alternative therapies used on patients with ASD include chiropractic, acupuncture, chelation, neuro-feedback and hyperbaric oxygen. Understanding which alternative therapies are being used can direct the general physician to look for potential side effects from these therapies (Table 2).
Patients with an ASD receive non-traditional therapies and may not have received standard vaccinations in childhood. This may increase the risk of particular infectious diseases (tetanus, mumps, measles, rubella, etc) not commonly seen in the general population for which general physicians should have heightened awareness when seeing a patient with an ASD.
Physical Examination, Diagnostic Evaluation and Invasive Therapies
The physical examination requirements for a patient with ASD are no different than for other patients. However, limitations in communication may not allow the general physician to get an accurate localisation and description of symptoms, especially pain. Working with care givers to use words familiar to the patient with an ASD and as 'interpreters' of the patient's verbal and physical responses to the exam is essential. Extra attention must also be given to the use of sign language and other communication techniques employed by patients with an ASD with verbal impairments. Traditional pain scales that rely on self-reporting of pain may be less effective with patients with an ASD. Scales that incorporate care giver-identified child-specific pain behaviours may be more effective in paediatric patients with an ASD. Nader et al reported that autistic children display similar responses to pain as non-autistic children. They noted increased facial expression of pain when compared with a matched control population. Therefore, assessing for pain using non-traditional methods may be required. Techniques used to help patients with an ASD tolerate the invasive parts of the physical exam include extensive and honest communication regarding what you are doing. This may be best done with step-by-step explanation or accomplished after demonstrating the exam or procedure on a care giver or stuffed animal, as age appropriate. When discussing painful procedures, such as lab draws, sample collection or imaging studies, it is best to describe each step of the procedure prior to starting and allow the patient to touch and feel all the equipment that will be used. It is also useful to reward good behaviour or cooperation with the procedure. Simple rewards, such as stickers or books for paediatric or adolescent patients with an ASD, respectively, can be helpful when trying to obtain buy-in from a patient with an ASD.
When distraction techniques prove to be insufficient, sedation may be employed. In our experience with the ASD population, the most commonly used drug class for anxiolysis is benzodiazepines (oral midazolam or intramuscular/intravenous lorazepam at standard weight based dosing). Procedural sedation can be effected most easily with intramuscular or even oral ketamine given the low side effect profile and lack of need for intravenous access. It is controversial as to whether premedication with midazolam is needed to avoid emergency reactions from ketamine sedation, but the possibility should be discussed with the patient and care giver where appropriate.
When administering treatments to patients with an ASD, extra time and attention need to be spent to ensure that barriers such as oral and textural aversions are managed. Parents anecdotally report difficulty getting patients with an ASD to take medications, and physicians often forget to take into account taste when treating patients with an ASD. Compliance with other forms of treatments, such as splints, casts, sutures and bandages, may be challenging in patients with an ASD who frequently have tactile sensitivities. Techniques that may prove useful focus on identifying and reducing exposure to tactile stimulations that bother the patient as well as spending extra time to allow exposure to the supplies being used. Covering splints or bandages with less threatening stickers or drawings in paediatric patients with an ASD can also be useful. Engaging the care giver with similar splints or casts may also reduce the threat in the eyes of the patient with an ASD.
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