Introductions
AIM- (Autism Is Medical) a 501c3 nonprofit organization created to serve the growing medical and educational needs of the autism community.
Overview
On Sunday, February 24th, 2013 our lives were forever changed when we were contacted by a physician from a local ER and asked about helping a child by the name of Alex Spourdalakis and his mom Dorothy. Alex was a fourteen year old non verbal autistic child who was described as “stranded” in the ER because no one would take him. That began a journey that is impossible to describe but imperative to look at with his life ending tragically.
While it’s impossible to review all that transpired for Alex, today we will be focusing on his Emergency Room stay and the challenges that presented there. The ER is the entry point for so many of our children and adults on the spectrum. Many times behavioral symptoms are the first sign and initial reason for seeking help at the Emergency Room.
These encounters have exceptional challenges as mainstream medicine is clearly not prepared for this rapidly growing patient population. Underlying pathophysiology is commonly ignored and replaced with a mindset steered toward psychiatric labeling and not a medical condition. This must end.
Today we hope to utilize the information we learned from Alex, along with our outstanding panelists, to educate you on being prepared for an ER visit, and also provide you with some useful tools. Everything we talk about today is referenced in your AIM folder along with links to where to find more information.
Topics Covered
Ø Restraints
Ø Violation of ER transfer laws
Ø No available services
Ø Emergency room
Ø Expectations
Ø Pt Rights and Responsibilities
Ø Considerations: standards of care not specialized, behavioral, GI exacerbation, seizures, special anesthesia considerations, metabolic crisis, use of ER protocol for specialty patients, trauma, and patient’s baseline behavior, pain assessment
Ø Disability laws
Ø Safety/School
Ø Preparation
CONSENSUS STATEMENT
Many times the autistic individuals’ entry into the health care system is through the emergency room. Often presenting with behavioral symptoms caused by underlying physical problems, this can create a challenging situation. Most physicians will not recognize these symptoms as a sign of something physiologically altered, and incorrectly attribute things like aggression or self- injurious behaviors to psychological causation.
These patients do not present to the ER in a “typical” fashion. However, there are a few considerations that AIM feels necessary to highlight to ensure appropriate, timely, and comprehensive medical care:
1. It is important to advocate for each individual and ensure that each patient receives a thorough physical and diagnostic exam.
2. Special consideration must be taken by the practitioner to ensure an accurate assessment is completed.
3. Unusually high pain tolerance may mask an injury or illness without “typical” pain responses like crying, grimacing, or guarding the area.
4. Every patient has the right to have their pain assessed and treated.
5. Modified pain rating scales are available for all patient populations, including nonverbal patients.
6. Aggression and/or self-injurious behaviors are (in this patient population) outward symptoms of pain.
7. Often a behavioral change is the only presenting symptom indicating an underlying problem. All too often these signs are missed or misinterpreted.
8. Diagnostics are not performed and serious health problems are undetected, sometimes with deadly consequences.
*Published in “Pediatrics”, the official Journal of the American Academy of Pediatrics, the following is included in the consensus statements:
Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report
Buie et al., 2010
“Statement 7
For a person with an ASD who presents for treatment of a problem behavior, the care provider should consider the possibility that a gastrointestinal symptom, particularly pain, is a setting event, that is, a factor that increases the likelihood that serious problem behavior (eg, self-injury, aggression) may be exhibited. Sudden and unexplained behavioral change can be the hallmark of underlying pain or discomfort. Behavioral treatment may be initiated as the possible concurrent medical illness is being investigated, diagnosed (or excluded), and treated, but the behavioral treatment should not substitute for medical investigation. The behavioral treatment plan should be developed, implemented, and changed as needed in collaboration with the medical caregivers who are leading the medical investigation.”
http://pediatrics.aappublications.org/content/125/Supplement_1/S1.full