Pa Patient Saf Advis 2014 Dec;11(4):141-8.
Improving Care for Patients with Autism Spectrum Disorder in the Acute Care Setting
Behavioral Healthcare; Emergency Medicine; Internal Medicine and Subspecialties; Nursing
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Authors

Michelle Feil, MSN, RN, CPPS
Senior Patient Safety Analyst

Susan C. Wallace, MPH, CPHRM
Patient Safety Analyst

Pennsylvania Patient Safety Authority

Arvind Venkat, MD, FACEP
Vice Chair for Research and Faculty Academic Affairs
Department of Emergency Medicine, Allegheny Health Network

Corresponding Author
Michelle Feil

Abstract

As the number of Pennsylvanians diagnosed with autism spectrum disorder (ASD) continues to grow, healthcare facilities are seeing an increase in the number of these individuals seeking care. Negative interactions with the healthcare system and concerns about the quality of care provided to this population have been reported by individuals with ASD, their families, and healthcare providers. The Pennsylvania Patient Safety Authority received 138 reports of events involving patients with ASD from July 2004 through August 2014. Qualitative analysis of event report narratives revealed 12 patient safety concern themes involving patients with ASD. Injury to self or potential injury to self was identified as the most frequently reported concern (n = 75), followed by interference or lack of cooperation with care (n = 30). Other events included aggressive behavior and/or injury to others, use of chemical or physical restraints, patient communication difficulties, and caregiver communication difficulties and/or consent issues. The patient safety concerns commonly encountered by ASD patients and their families as reported to the Authority are consistent with the concerns cited in the published literature. Resources such as those developed by the Western Pennsylvania Autism Services, Education, Resources, and Training Collaborative are available to help healthcare facilities improve care for this population.

Introduction

Autism spectrum disorder (ASD) is a complex, lifelong neurodevelopmental condition characterized by impairments in the areas of communication and social interaction and restricted, repetitive patterns of behavior, interests, or activities.1 Autism is considered a spectrum condition because symptoms range from mild to severe and vary over time or in response to changes in situations.2 The Centers for Disease Control and Prevention estimates that the prevalence of ASD in the United States is 14.7 per 1,000 (1 in 68) for children eight years of age, with an estimated two million Americans carrying a diagnosis of ASD.1 Prevalence estimates vary by sex, with approximately 1 in 42 boys and 1 in 189 girls identified as having ASD.1

In 2005, there were nearly 20,000 Pennsylvanians with ASD, according to a census study commissioned by the Pennsylvania Bureau of Autism Services. Given trends and projected numbers from the census update, the bureau estimates that there were over 55,000 children and adults in Pennsylvania with ASD in 2013.3

The bureau conducted a needs assessment of individuals with ASD and their families in 2011; respondents reported increased contact with the healthcare system, most prominently through emergency medical services, the emergency department (ED), and acute inpatient hospitalization. The top five reasons for acute inpatient hospitalization, in descending order, were (1) aggression (including defiant or oppositional behaviors), (2) self-injury, (3) anxiety and/or depression, (4) running away, and (5) obsessions. Respondents, particularly caregivers for adults with ASD, frequently reported dissatisfaction surrounding interactions with the healthcare system. Over half of this group cited increased acute care resource utilization that was undesired, unwanted outcomes, and poor discharge planning. In general, caregivers reported difficulty finding providers who understood and could address the needs of individuals, particularly adults, with ASD.4

These findings align with literature that suggests that most general healthcare providers have little knowledge of the commonly used therapies to treat ASD and their side effects, the medical conditions that bring patients with ASD to the healthcare system, and the optimal means to manage these individuals.5

An analysis of events reported to the Pennsylvania Patient Safety Authority involving patients with ASD revealed concerns similar to those reported from the Pennsylvania autism needs assessment and those reported in the literature. Risk reduction strategies and resources are available to assist healthcare providers in the acute care setting to meet the needs of individuals and families living with ASD and to improve the safety and quality of services provided.

Methods

Analysts queried the Pennsylvania Patient Safety Reporting System (PA-PSRS) database for reports of events involving patients with ASD from the inception of the reporting program in July 2004 through August 2014. Event reports that contained the terms “autistic,” “autism,” “ASD,” or “Asperger” were selected and analyzed individually in order to identify those reports that described events involving patients with ASD. The resulting event reports were then analyzed according to patient age, facility type, event type, and harm score. In addition, qualitative analysis was performed to identify common patient safety concerns described in the event report narratives.

Results

Analysts identified 138 events involving patients diagnosed with ASD that were reported through PA-PSRS from July 2004 through August 2014. Figure 1 shows that the majority of these events were reported for patients under the age of 20 (60.9%, n = 84), with most of these events reported for patients under age 10 (37.7%, n = 52).

Figure 1. Autism-Related Events Reported to the Pennsylvania Patient Safety Authority, by Age Group, July 2004 through August 2014 (N = 138) 

 ​Figure 1. Autism-Related Events Reported to the Pennsylvania Patient Safety Authority, by Age Group (N =138)

 Figure 2 displays the number of events reported for children and adolescents (i.e., under age 18) and adults (i.e., age 18 or older) with ASD for each of the seven facility types reporting through PA-PSRS. Although acute care and children’s hospitals reported the majority of events (82.6%, n = 114), events have been reported for individuals with ASD at each facility type.

Figure 2. Autism-Related Events Reported to the Pennsylvania Patient Safety Authority, by Facility Type and Age Group, July 2004 through August 2014 (N = 138)
Figure 2. Autism-Related Events Reported to the Pennsylvania Patient Safety Authority, by Facility Type and Age Group (N = 138) 

The highest number of events involving patients with ASD were reported using the PA-PSRS event type category labeled “other,” followed by falls and errors related to, or complications of, procedures, treatments, or tests (see Table 1). The majority of events were reported as Incidents (i.e., events without harm to the patient) (90.6%, n = 125). Of the 13 events reported as Serious Events (i.e., events resulting in harm to the patient), 10 were reported as resulting in temporary harm and 3 were reported as resulting in permanent harm, up to and including death.

Table 1. Autism-Related Events Reported to the Pennsylvania Patient Safety Authority, by Event Type,* July 2004 through August 2014 (N = 138) ​
Event Type No. (%) of Events
Other37 (26.8)
Fall35 (25.4)
Error related to procedure, treatment, or test24 (17.4)
Complication of procedure, treatment, or test20 (14.5)
Skin integrity16 (11.6)
Medication error5 (3.6)
Equipment, supplies, or device 1 (0.7)
* Event types are defined by Pennsylvania Patient Safety Reporting System taxonomy and are assigned to events by healthcare facilities at the time of report submission. ​

  
Through qualitative analysis of event report narratives, analysts were able to identify 12 commonly reported patient safety concerns. The most commonly reported patient safety concern was injury or potential injury to self, followed by interference or lack of cooperation with care. Table 2 lists the number of events reported for each of the 12 patient safety concerns identified. Within the category of injury or potential injury to self (n = 75), falls were the most commonly reported patient safety concern (46.7%, n = 35), followed by intentional self-harm or self-soothing behavior resulting in harm (24.0%, n = 18), other accidental injury (16.0%, n = 12), patient removal or dislodgement of intravenous catheters or other medical devices (10.7%, n = 8), and ingestion of a foreign body or nonfood substance (2.7%, n = 2).

Table 2. Autism-Related Events Reported to the Pennsylvania Patient Safety Authority, by Patient Safety Event Concern,* July 2004 through August 2014 (N = 138)

Patient Safety Event Concern

No. (%) of events

Injury or potential injury to self

75 (54.4)

Interference or lack of cooperation with care

30 (21.7)

Aggressive behavior and/or injury to others

21 (15.2)

Chemical restraint and/or sedation used

21 (15.2)

Patient communication issues

16 (11.6)

Caregiver communication difficulties and/or consent issues

12 (8.7)

Mechanical and/or physical restraints used

12 (8.7)

Patient did not receive care and/or caregiver signed patient out against medical advice

11 (8.0)

Other medical condition contributed to a poor outcome

8 (5.8)

Delays in care caused increased agitation

7 (5.1)

Staff not prepared to care for special needs

5 (3.6)

Other challenging and/or impulsive behavior without injury

4 (2.9)

* Patient safety event concerns were identified as a result of qualitative analysis of event report narratives.

† Event report narratives may have described more than one patient safety concern; therefore, the number of events totals more than 138 and percentages total more than 100.

   
The following are examples of events reported to the Authority involving patients with ASD:

A behavioral health patient who is also autistic and mentally challenged has a history of self-injurious behavior. The patient became agitated and slid up in the bed thrashing. The patient hit their head on the radiator, sustaining a small laceration to the back of the head which required sutures placed by the emergency department physician.

A patient with history of autism, bipolar disorder, and aggression fell in the operating room while trying to run from anesthesia. The patient sustained a small open area on the right arm, and a bandage was applied.

Patient’s mother wishes to sign out AMA [against medical advice]. She states that she cannot wait and will take her child to see their primary care provider in the morning. She states that her child is autistic and must be kept on a schedule. AMA paperwork was signed, risks were understood and acknowledged, and the mother was encouraged to return for worsening symptoms. The patient left prior to being evaluated by a physician.

A physician came to radiology to report a problem. I was then informed that our sonography technician on call was extremely rude to a nine-year-old autistic patient and their family in the emergency room and that the technician didn’t finish the ultrasound and informed the mother that since the patient was uncooperative, she was finished. The technician returned to repeat the exam. I called the emergency room to ask them if they wanted me to help/observe the technician this time. After about a half hour, the little one exhausted himself and finally lay extremely still without assistance, and the ultrasound was completed after delay.

A nonverbal, autistic patient was admitted from a group home for leg surgery. The patient was disruptive on the medical-surgical unit on post-op day #1 and was transferred to a higher level of care for private room accommodations. On post-op day #2, the patient was agitated, trying to get out of bed independently with a cast and wound vacuum-assisted closure device attached to their leg. The patient removed three intravenous catheters. The staff was unable to ascertain how to best deal with the patient. The primary physician and nurse from the group home came to the unit and explained the patient’s baseline and ways to deal with the patient’s behaviors. The psychiatrist also noted that the medication reconciliation was done incorrectly and that the patient was not receiving the proper doses of medication. The patient has had a sitter, but now two sitters are in the room. Medications were readjusted and the care plan was updated with specific interventions that are used at the group home.

Discussion

Growth in the number of Pennsylvanians of all ages living with ASD, together with increased contact with the healthcare system reported by these individuals and their families, suggests that the number of events involving ASD patients reported through PA-PSRS represents only a small subset of such events. The actual number may in fact be much higher, as identification of these events is dependent upon the inclusion of terms that identify a patient with ASD in the event description. Many such events may have been reported without mention of the ASD diagnosis. Though the number of reports submitted through PA-PSRS from July 2004 through August 2014 involving patients with ASD may be small (N = 138), 9.4% (n = 13) were labeled Serious Events. In contrast, Serious Events represented only 3.1% (n = 7,543) of all events reported through PA-PSRS in 2013 (N = 246,606).6

In a 2014 study of patient safety incidents encountered by patients with intellectual disabilities (including ASD) at National Health Service hospitals in England, Tuffrey-Wijne et al. found limitations in using event reports to monitor and prevent such patient incidents. These limitations included a failure to identify patients with intellectual disabilities in the clinical documentation and event reporting systems and a tendency for reporters to focus on incidents resulting in immediate or potential physical harm, such as falls, as opposed to delays or omissions of care—the types of incidents more often reported by patients and families as resulting in patient harm.7

Analysis of PA-PSRS event reports suggests that the same may be true for events involving patients with ASD in Pennsylvania. Still, examination of these event reports enables identification of common concerns faced by both the recipients and providers of care for this population.

The majority of research in the area of ASD to date has been focused on prevalence of the disorder, potential etiologies, early identification strategies, and interventions aimed at reducing associated symptoms, building adaptive skills, and maximizing quality of life for children with ASD. Two areas currently in need of further research are improving care of the patient with ASD in the acute care environment5,8 and specifying the needs of adults with ASD in all care settings.9

A small number of guidelines have been published to aid the care of children and adults with ASD. However, similar to the focus in ASD research, these guidelines focus primarily on diagnosis, early recognition, and interventions targeted to treating the condition itself; they do not outline interventions specific to caring for patients with ASD in the acute care setting.2,10,11 Individual hospitals may have developed clinical practice guidelines—for example, Cincinnati Children’s Hospital’s Best Evidence Statements (BESt).12 These BESt guidelines primarily outline outpatient cognitive and behavioral therapies for treating children with ASD; however, some of the BESt statements may be applicable to the acute care setting. For instance, one such BESt statement offers guidance for oral anxiolytic use prior to ambulatory healthcare encounters with patients with developmental and behavioral challenges, including patients with ASD.13

In the absence of robust literature and clinical guidelines specific to the care of patients with ASD in the acute care setting, the Authority reached out to professionals and organizations with a vested interest in improving this care.

Treating the Autistic Patient

The Center for Autism, in Philadelphia, was established in 1955 and was the first clinic in the United States devoted exclusively to the treatment of autism. The mission of the center is to improve the quality of life for individuals with ASD and their families. The center does this by providing treatment, support, education, and resources that are needed to advocate for individuals with ASD.14 In a conversation with the Authority, Joel Bregman, MD, chief of psychiatry at the center, highlighted the following challenges in caring for individuals with ASD in the acute care setting.15

Lack of knowledge by healthcare providers. Most of the healthcare professionals who have treated autistic patients for decades know that medical care for this population is poor, according to Bregman. “There are a number of groups and centers that specialize in autism that have become increasingly concerned about the adequacy of medical care for those with autism throughout the age span—not just children, but for adolescents and adults, as well. There hasn’t been a part of medical education that I’m aware of in medical school, or nursing programs or other health-related fields, that really gives adequate instruction or training in working with people with ASD. It can be incredibly challenging because people with autism don’t interact and function the way most people do.”

It is important that healthcare providers have a working knowledge of the social, communication, and behavioral features of ASD, according to Bregman, because “the ASD patient can be misleading in terms of what they understand and don’t understand, or what they are receiving or experiencing.” For instance, a common behavioral feature of ASD is hypersensitivity to sights or sounds, but not all individuals respond in the same way; “some have a low level of arousal and it takes an awful lot to get them going,” Bregman said. Another common feature is compulsive or ritualistic behavior, “and if things are out of sequence or don’t fit their schedule, they can just fall apart. Often it’s the small things and not the bigger things. So if a staff member in the emergency room used their right hand to get the liquid soap sanitizer rather than their left that could just throw them totally off. It doesn’t make sense. People who don’t understand are not even going to be thinking that it can cause such a tremendous problem, but it can.”

Time pressures. The speed at which the healthcare delivery system functions can serve as a barrier to effectively interacting with and providing care to patients with ASD, Bregman said. “We don’t spend much time with patients. We don’t sit and talk with them. We don’t ease into discussions and exams. It’s hurry, hurry, hurry. You can’t do that with people who have autism.”

Waiting. Waiting or delays in care can be extremely anxiety-provoking in patients with ASD. “Waiting is incredibly difficult; it’s a concept that doesn’t register,” Bregman said. “One thing you can do right away at the door is to get these patients back into a room and not have them wait.” Bregman explained that the time and effort expended to expedite this care when the patient presents to the emergency room or other healthcare setting will end up saving time later during the healthcare encounter. “What will unfortunately happen is that it will cost you more time if you have them wait.”

Communication with caregivers. The more information healthcare providers can obtain about an individual with ASD early in the healthcare encounter or prior to the healthcare encounter, the better, according to Bregman. “A parent, a group home manager, or a caregiver should have prepared some basic information about the person—what their issues are, what their medical problems are, some other tips about what to avoid, or how to approach them.” By working with the caregivers and asking them what works and what does not work, the healthcare provider will have greater success treating the ASD patient.

Communication with patients. Most people with autism, although very bright, are also very concrete and literal, Bregman said. He recommends that healthcare providers avoid using abstract terms. “‘Are you well?’ and ‘Do you hurt?’ are incredibly abstract questions. You have to be specific. You can try a general question, but if you don’t get an answer, ask them to point to where it hurts. You have to be concrete. Even photographs can be helpful.”

De-escalation. If an autistic patient is becoming anxious and displaying agitated or aggressive behavior and an emergency call for assistance is made, that can escalate things even more, Bregman said. “Imagine yourself in a different country, with a whole different culture, whole different language, whole different way of doing things, and you were trying to understand it but you really couldn’t. Then a hoard of people started running at you with open arms—it can be absolutely terrifying. If you’re slow, if you’re gentle, if you’re quiet, if you don’t rush them and you take your time and let them know what’s going to happen, verbally and nonverbally, you can avoid an autistic patient becoming out of control.”

Need for Education

The rising prevalence of ASD and the limited training and understanding of ASD by general healthcare providers suggests the need for more education and training to address the special needs of this population.4,5 Healthcare providers working in the ED are in particular need of this education and training. The ED serves as the gateway for medical care for the majority of acutely ill patients, including those with ASD. All patients presenting with acute ailments expect that the ED and emergency physicians in particular will be able to diagnose and initiate management of critical conditions. Without special preparation and a sensitive approach to the patient with ASD and their caregiver, the diagnosis and management of these conditions is likely to be ineffective and potentially endanger these individuals when they are most in need.5

Autism Services, Education, Research, and Training (ASERT) Collaborative. The Western Pennsylvania ASERT Collaborative is one of three regional ASERT Collaboratives in the state, and it includes professionals with backgrounds in education, medicine, psychology, and social work who specialize in the care of patients and families living with ASD. Funded by the Pennsylvania Bureau of Autism Services, the ASERT Collaboratives were tasked with taking action to address the areas of concern identified in the previously cited Pennsylvania autism needs assessment. In response, the western group developed ACT for Autism, a program consisting of educational materials and training opportunities for first responders16 and ED personnel17 who provide care to individuals with ASD. See Autism Services, Education, Resources, and Training (ASERT) for further information about this program.Joann M. Migyanka, DEd, an associate professor of special education at the Indiana University of Pennsylvania and a member of the Western Pennsylvania ASERT Collaborative, recalled an incident in Indiana, Pennsylvania, that prompted the creation of the first ACT for Autism training program16 for first responders:

A young man with ASD was standing on a street corner waiting for the bus. He became agitated because the bus was late and had begun to soothe himself by humming, rocking, and jumping up and down. A passerby mistook these actions and called police, who drove to the scene with sirens blaring and bright lights flickering. As a result, the young man became even further agitated. As the police were arresting him, a nearby shop owner who knew the young man came out to speak to the police and clarify the situation.

“Loud noises and bright lights can cause increased agitation and anxiety in a person with ASD,” Migyanka said. “A person with ASD has difficulties with sensory processing. First responders need to approach without loud sirens and flashing lights, in a slow, calm manner and respect personal space.”

After working with first responders, ASERT Collaborative members identified a need to develop similar training for ED personnel, prompting the development of the second ACT for Autism training program for ED healthcare providers.17

Evaluation of pre- and postintervention surveys administered to ACT for Autism training program attendees, both first responders and ED healthcare providers, suggests that the program is effective in supporting training about (1) the characteristics of ASD, (2) the challenges posed by this condition for patients and families in prehospital and acute care settings, and (3) methods to improve interactions between these individuals and the healthcare team.18

Risk Reduction Strategies

The following strategies are suggested for healthcare facilities seeking to improve the quality of care for patients with ASD.

  • Provide to all staff, including healthcare providers and allied health professionals, education and training that covers information about the characteristics of ASD, the challenges faced by patients with ASD and their families in the acute care setting, and methods to improve interactions between these individuals and the healthcare team.2,5,8,10,11,16,17
  • Identify treatment areas where accommodations can be readily made for ASD patients.5,8,16,17
  • Design treatment areas using evidence-based environmental modifications shown to be beneficial in caring for ASD patients:
    • Designate a location away from busy waiting rooms and other noisy treatment areas.5,8,16,17
    • Avoid the use of fluorescent lighting.5,8,16,17
    • Reduce the amount of room-based equipment.5,8,16,17
    • Use portable monitors and treatment implements for patient assessment and management.5,8,16,17
    • Provide age-appropriate and soft, warm, or other texturally soothing materials to both distract and comfort patients.5,8,16,17
    • Gain as much information as possible from caregivers about the patient with ASD and the best way to communicate with them.2,5,8,10,11,16,17
  • Utilize the following general approaches to communication:
    • Approach the patient calmly and slowly, leaving distance between yourself and the patient.2,5,8,10,11,16,17
    • Address the patient using their first name.16,17
    • Ask simple yes/no, rather than multistep or abstract, questions.16,17
    • Provide an explanation using simple terms and a demonstration, when possible, prior to touching the patient or performing any procedure.5,8,16,17
    • Reassure the patient that you are trying to help them, and praise them for cooperation.16,17
  • Develop a protocol for de-escalating ASD patients who present in acute distress. The protocol could include the following techniques that have been shown to be effective:
    • Provide an appropriately structured and soothing environment.5,8,16,17
    • Utilize therapeutic communication and verbal de-escalation techniques.5,8,16,17
    • Minimize the number of individuals caring for a patient.5,8,16,17
    • Use warm blankets, rather than physical restraints, to wrap the patient.5,8,16,17
    • Administer medications recommended for anxiolysis or sedation in patients with ASD when necessary (i.e., benzodiazepines and/or antipsychotic medications).5,8,13,16,17
  • Consider convening a focus group to examine the issues faced by patients and families living with ASD who receive care at the facility. Invite stakeholders from the community, including patients, caregivers and other family members, representatives of autism support agencies, and other professionals specializing in the care of individuals with ASD.2,10,11
  • Learn more about the needs of Pennsylvanians with ASD and resources available to help meet those needs, such as the ACT for Autism training programs.16-18

Conclusion

A growing number of Pennsylvanians have been diagnosed with ASD, and the number of these individuals seeking acute medical care is increasing. Concerns about the quality and safety of care provided to this population have been reported—both through PA-PSRS and in surveys conducted by the Pennsylvania Bureau of Autism Services of individuals with ASD and their families. Treating a patient with ASD can be difficult, as these patients can exhibit significant social, communication, and behavioral challenges; when a patient with ASD presents in an emergency situation, the challenges can be even more substantial. Proactive education about the characteristics of ASD and training outlining approaches to care for individuals with ASD may help healthcare personnel successfully deliver medical services and decrease stress for both providers and patients.

Notes

  1. Centers for Disease Control and Prevention. Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010 [online]. MMWR Morb Mortal Wkly Rep 2014 Mar 28 [cited 2014 Sep 12]. http://www.cdc.gov/mmwr/pdf/ss/ss6302.pdf
  2. National Institute for Health and Clinical Excellence (NICE). Autism: recognition, referral, diagnosis and management of adults on the autism spectrum [online]. NICE clinical guideline CG142. 2012 Jun [cited 2014 Sep 12]. http://www.nice.org.uk/guidance/CG142
  3. Pennsylvania Department of Public Welfare. Pennsylvania autism census report [online]. 2013 Dec [cited 2014 Sep 12]. http://www.paautism.org/Portals/0/Docs/Census/PA%20Autism%20Census%20Study%20Overview_updated%20DEC2013.pdf
     
  4. Bureau of Autism Services. Pennsylvania Department of Public Welfare. Pennsylvania autism needs assessment: a survey of individuals and families living with autism [online]. 2011 Sep [cited 2014 Sep 12]. http://www.paautism.org/desktopmodules/asert-api/api/item/ItemDetailFileDownload/160/ASERT%20Autism%20Needs%20Assess_Statewide%20Summary.pdf
  5. Venkat A, Jauch E, Russell WS, et al. Care of the patient with an autism spectrum disorder by the general physician. Postgrad Med J 2012 Aug;88(1042):472-81.
  6. Pennsylvania Patient Safety Authority. Pennsylvania Patient Safety Authority 2013 annual report [online]. 2014 Apr 30 [cited 2014 Nov 10]. http://papatientsafety.beta.pa.gov/PatientSafetyAuthority/Pages/AnnualReports.aspx
  7. Tuffrey-Wijne I, Goulding L, Gordon V, et al. The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study. BMC Health Serv Res 2014 Sep 24;14(1):432.
  8. McGonigle JJ, Venkat A, Beresford C, et al. Management of agitation in individuals with autism spectrum disorders in the emergency department. Child Adolesc Psychiatr Clin N Am 2014 Jan;23(1):83-95.
  9. Interagency Autism Coordinating Committee (IACC). US Department of Health and Human Services. IACC strategic plan for autism spectrum disorder (ASD) research—2013 update [online]. 2014 Apr [cited 2014 Sep 18]. http://iacc.hhs.gov/strategic-plan/2013/index.shtml
  10. National Institute for Health and Clinical Excellence (NICE). Autism diagnosis in children and young people: recognition, referral and diagnosis of children and young people on the autism spectrum [online]. NICE clinical guideline CG128. 2011 Sep [cited 2014 Sep 18]. http://www.nice.org.uk/guidance/CG128
  11. National Institute for Health and Clinical Excellence (NICE). Autism: the management and support of children and young people on the autism spectrum [online]. NICE clinical guideline CG170. 2013 Aug [cited 2014 Sep 18]. http://www.nice.org.uk/guidance/CG170
  12. Cincinnati Children’s Hospital Medical Center. Evidence-based care recommendations [website]. [cited 2014 Sep 18]. Cincinatti (OH): Cincinnati Children’s Hospital Medical Center. http://www.cincinnatichildrens.org/service/j/anderson-center/evidence-based-care/recommendations/default 
  13. Cincinnati Children’s Hospital Medical Center. Best Evidence Statement (BESt): oral anxiolytic medication prior to ambulatory healthcare encounters for individuals with special developmental and behavioral challenges [online]. 2011 Mar 10 [cited 2014 Sep 18]. http://www.cincinnatichildrens.org/workarea/linkit.aspx?linkidentifier=id&itemid=87979&libid=87667
  14. Center for Autism. Mission, vision, and treatment approach [online]. [cited 2014 Sep 18]. http://www.thecenterforautism.org/about-us/mission-vision
  15. Bregman, Joel (Chief of Psychiatry, the Center for Autism). Conversation with: Pennsylvania Patient Safety Authority. 2014 Aug 15.
  16. Migyanka JM. ACT for autism. A first responder’s guide: individuals with autism in emergency and crisis situations [DVD and training manual]. Indiana (PA): Pennsylvania Bureau of Autism Services; 2010.
  17. Autism Services, Education, Research, and Training Collaborative. ACT for autism. A guide for emergency department personnel: assessing and treating individuals with autism [DVD and training manual]. Indiana (PA): Pennsylvania Bureau of Autism Services; 2013.
  18. McGonigle JJ, Migyanka JM, Glor-Scheib SJ, et al. Development and evaluation of educational materials for pre-hospital and emergency department personnel on the care of patients with autism spectrum disorder. J Autism Dev Disord 2014 May;44(5):1252-9.

Supplemental Material

Autism Services, Education, Resources, and Training (ASERT)

ASERT is a statewide initiative funded by the Pennsylvania Department of Public Welfare’s Bureau of Autism Services that aims to support individuals with autism spectrum disorder (ASD) and their families. There are three ASERT regions in Pennsylvania: western, central, and eastern. Each region has established an ASERT Collaborative: a partnership of medical centers, centers of autism research and services, universities, and other providers of services for individuals of all ages with ASD and their families. These collaboratives are charged with understanding and meeting the needs of this population that are common across the state as well as region-specific. Working independently and in partnership, the ASERT Collaboratives sponsor a number of programs for individuals and families on subjects as diverse as navigating interactions with the justice system to the development of life care and social skills. They also provide training programs supporting licensure requirements for behavioral specialists. Through these programs, the ASERT Collaboratives seek to improve the lives of the rising number of Pennsylvania residents and families living with ASD.

ACT for Autism

The Pennsylvania Bureau of Autism Services conducted a needs assessment of individuals and their families living with ASD in 2011.1Respondents reported increased contact with the healthcare system, most prominently through emergency medical services, the emergency department, and acute inpatient hospitalization. Respondents expressed frustration with the healthcare system due to a lack of familiarity with the special needs of individuals with ASD among healthcare personnel and a lack of accommodation for the issues that can make care challenging for this patient population.

In response, the Western Pennsylvania ASERT Collaborative brought together a group of healthcare professionals, autism treatment experts, and special education specialists to develop ACT for Autism, a training program for first responders, emergency department staff, and acute care providers. This program provides information about the nature of ASD and commonly utilized therapies; medical conditions that can cause individuals with ASD to present to the healthcare system; and techniques to safely, effectively, and rapidly assess and treat patients with ASD.

ACT for Autism outlines the steps that can be taken to improve interactions between healthcare personnel and individuals with ASD:

  • Assess the treatment environment and the acute needs of the ASD patient.
  • Communicate effectively with the patient, allowing the patient to convey their needs to the provider.
  • Treat the patient using diagnostic and therapeutic interventions in a manner that is as minimally disconcerting to this population as possible.

ACT for Autism has been presented in a variety of local, state, and national venues to first responders and emergency department personnel. Evaluation of the effectiveness of the program has been favorable, with recipients of the training showing increased knowledge and improved comfort in caring for patients with ASD.2

Accessing Training Materials

The ACT for Autism training modules consist of separate programs for emergency medical services and emergency department staff. Each program includes a DVD and accompanying training manual with a knowledge assessment quiz.

Hospitals interested in ACT for Autism training can contact the Western Pennsylvania ASERT Collaborative through the website http://www.paautism.org or obtain ACT for Autism training materials from the Indiana University of Pennsylvania marketplace website at https://ep01.iup.edu/C20877_ustores/web/index.jsp.

Notes

  1. Bureau of Autism Services. Pennsylvania Department of Public Welfare. Pennsylvania autism needs assessment: a survey of individuals and families living with autism [online]. 2011 Sep [cited 2014 Sep 12]. http://www.paautism.org/desktopmodules/asert-api/api/item/ItemDetailFileDownload/160/ASERT%20Autism%20Needs%20Assess_Statewide%20Summary.pdf
  2. McGonigle JJ, Migyanka JM, Glor-Scheib SJ, et al. Development and evaluation of educational materials for pre-hospital and emergency department personnel on the care of patients with autism spectrum disorder. J Autism Dev Disord 2014 May;44(5):1252-9.

 

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