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Improving Services

Disclaimer: This summary is based on research conducted by Autism Treatment Network (ATN) members. It is not a summary of the entire body of research literature available on this subject

Families can face many road blocks when they need medical care for their loved ones with autism. When a child is young, spotting the early signs of autism and getting a diagnosis lets the child get early-intervention therapy quickly. But many pediatricians feel they need more training on how to screen and treat their patients with autism [1]. Many families have to wait a long time for an appointment with a doctor who can diagnose children with autism[2]. Children whose parents have less education, or who have mild autism symptoms and higher IQ scores, are often diagnosed at older ages [3]. Also, white and non-white children with autism don’t get the same amount of care from specialist doctors (doctors who focus on just one area of the body like the stomach or the brain). This could be because some families had a hard time getting medical care, were not referred to specialist doctors, or the family did not follow-up with the specialist doctors [3]. Telemedicine – meeting with a health care provider over the internet - is one way to help. Telemedicine lets families meet with health care providers who might be too far away to visit in person. It also lets health care providers share information with each other including expert information about caring for children with autism [1],[4]. Going to the emergency room can be very hard for people with autism and their families. Families can have a hard time explaining about autism and what their child needs. They may have to wait a long time for care. Or they might feel rushed by staff who are not used to caring for patients with autism. Families also may feel that the emergency room staff does not see them as experts on their child or teen with autism [5]. Some families find it stressful to tell the emergency room staff that their child has an autism diagnosis because they are afraid of being judged. Health care providers agree that explaining that the patient has autism is an important part of being able to give the patient the best care [6]. One tool that can help families in hospital or emergency room situations is an Autism Specific Care Plan. Families can create their own Autism Specific Care Plan and bring it with them to share with hospital staff. An Autism Specific Care Plan helps families give hospital staff information on how to best communicate and interact with their child and keep them safe. Families who use Autism Specific Care Plans feel happier with their care and feel that health care providers are better at working with their child or teen with autism [7]. Hospitals and emergency rooms can also think about making changes to help patients with autism. Small changes such as keeping wait times short, creating a calm space, and playing a movie, can all help lower anxiety for kids and adults with autism. Making sure parents are part of all medical care and treated as experts on their child can help both families and staff. Finally, hospital staff can try communicating in the way the patient prefers (talking vs. typing, etc.)[7][8][5][9].

Frequently Asked Questions

  1. WHY IS IT HARD TO GET SERVICES?

    • Many pediatricians need more training on screening and treating patients with autism [1].
    • Families often have to wait months or even years for an appointment with a doctor who can diagnose children with autism[2].
  2. WHO DOES THIS HURT THE MOST? Families who have the most trouble getting services tend to:

    • Have less education
    • Have children with milder autism symptoms and higher IQ scores [3]
    • Not get the same amount of care from specialist doctors [3]
  3. WHAT CAN HEALTH CARE PROVIDERS DO TO HELP?

    • Pediatricians can access online training from autism experts to help them improve care for their patients with autism [1] [4]
    • Pediatricians can stay in contact with families of children with autism to make sure the family is able to follow-up with specialist doctors [10]
  4. WHAT ABOUT EMERGENCY ROOM CARE? Families of people with autism often struggle with:

    • Explaining their child’s needs
    • Waiting a long time for care
    • Feeling rushed by staff who are not used to caring for patients with autism
    • Feeling judged by emergency room staff [3] [5]
  5. WHAT CAN PARENTS DO TO HELP? Families can think about creating an Autism Specific Care Plan which helps:

    • Give hospital staff information on how to best communicate and interact with the autistic patient
    • Families feel happier with their care
    • Families work as experts on their child together with hospital staff [7].
  6. WHAT CAN HOSPITALS DO TO HELP?

    • Keep wait times short for patients with autism
    • Create a calm space
    • Consider playing a calming movie if a patient is anxious
    • Make sure parents are a part of all medical care
    • Treat parents as experts on their child with autism
    • Communicate with the patient in the way the patient prefers (talking vs. typing)[7] [8] [5] [9]

References

  1. Malow BA, Connolly HV, Weiss SK, Halbower A, Goldman SE, Hyman SL, et al.. The Pediatric Sleep Clinical Global Impressions Scale—A new tool to measure pediatric insomnia in autism spectrum disorders. Journal of Developmental & Behavioral Pediatrics. 2016 ;37:370–376.
  2. Austin J, Manning-Courtney P, Johnson ML, Weber R, Johnson H, Murray DS, et al.. Improving access to care at autism treatment centers: a system analysis approach. Pediatrics. 2016 ;137:S149–S157.
  3. Mazurek MO, Handen BL, Wodka EL, Nowinski LA, Butter E, Engelhardt CR. Age at first autism spectrum disorder diagnosis: the role of birth cohort, demographic factors, and clinical features. Journal of Developmental & Behavioral Pediatrics . 2014 ;35(9):561-9.
  4. Knutsen JD, Wolfe A, Burke BL, Hepburn S, Lindgren S, Coury DL. A Systematic Review of Telemedicine in Autism Spectrum Disorders. Review Journal of Autism and Developmental Disorders. 2016 ;3:330–344.
  5. Nicholas DB, Zwaigenbaum L, Muskat B, Craig WR, Newton AS, Kilmer C, et al.. Experiences of emergency department care from the perspective of families in which a child has autism spectrum disorder. Social Work in Health Care. 2016 ;55:409–426.
  6. Muskat B, Greenblatt A, Nicholas DB, Ratnapalan S, Cohen-Silver J, Newton AS, et al.. Parent and health care provider perspectives related to disclosure of autism spectrum disorder in pediatric emergency departments. Autism. 2016 ;:1362361315621520.
  7. Broder-Fingert S, Shui AM, Ferrone C, Iannuzzi D, Cheng ER, Giauque A, et al.. A pilot study of autism-specific care plans during hospital admission. Pediatrics. 2016 ;137:S196–S204.
  8. Citekey 1738 not found
  9. Zwaigenbaum L, Nicholas DB, Muskat B, Kilmer C, Newton AS, Craig WR, et al.. Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 2016 ;:1–12.
  10. Broder-Fingert S, Shui AM, Pulcini CD, Kurowski D, Perrin JM. Racial and ethnic differences in subspecialty service use by children with autism. Pediatrics. 2013 ;132(1):94-100.