New Hampshire Council on Autism Spectrum Disorders
Putting the Pieces Together in the Granite State
LEARN the SIGNS, Early Health and Safety Concerns
- Elopement attempts peaked at age 5 for children with an autism spectrum disorder.
- From age 4 to 7, 46% of children with autism wandered away, four times the rate (11%) of siblings without autism. From age 8 to 11, 27% did; from age 12-17, 12% did.
- Children who wandered had more severe autism symptoms and had lower intellectual and communications scores than those who did not.
- The most common locations from which children bolted were their own home or another home (74%), stores (40%) and classroom or schools (29%).
From Pediatrics (Oct, 2012), "Occurrence and Family Impact of Elopement in Children with Autism Spectrum Disorders" by Connie Anderson, PhD and colleagues. Based on data from the Interactive Autism Network (IAN).
Early Health and Safety Concerns
A family that supports a child with a complex condition such as autism will find that their primary care doctor (PCP) is an invaluable ally. Your child's physician can help you understand what a diagnosis of ASD will mean for your child and family, and help you to anticipate the services and supports that will be needed as your child grows. As health insurance becomes a more important resource for early treatment(s) for autism, primary care physicians also play an important role in establishing a treatment plan that is approved by the insurance carrier. Referral to medical specialists and communication with your child's special education team may be other important ways that your child's doctor assists you and your child.
Because of the complex care required by a child with ASD, it is highly recommended that they receive their care through a "medical home."
What is a Medical Home?
A Medical Home is not a house, office, or hospital, but rather an approach to providing comprehensive primary care. In a medical home, a physician lead healthcare team works in partnership with the family and child to assure that the medical and associated non-medical needs of the patient are met. Through this partnership, the clinician can help the family access and coordinate specialty care, educational services, out-of-home care, family support, and other public and private community services that are important to the overall health of the child and family.
Here are some very practical ways that you can recognize a Medical Home:
Accessible & Continuous
- Care is provided in the community.
- Changes in insurance providers or carriers are accommodated by the medical home practice.
Coordinated & Comprehensive
- Preventive, acute care, specialty care, and hospital care needs are addressed.
- When needed, a plan of care is developed with the patient, family, and other involved care providers and agencies.
- Care is accessible 24 hours a day, 7 days a week.
- The patient’s medical record is accessible, but confidentiality is maintained.
- Families and individual clients are involved at all levels of decision-making.
Compassionate and Culturally Effective
- The patient’s and family’s cultural needs are recognized, valued, respected, and incorporated into the care provided.
- Efforts are made to understand and empathize with the patient’s and family’s feelings and perspectives.
What can families do to help?
The Medical Home approach is not a one way street. It relies on family caregivers to trust their provider, take time to prepare for appointments, and ask thoughtful questions. Here are some ways to get the most out of your child's medical home:
- Communication is key: For tips from Family Voices on communicating with your healthcare team.
- Many families find that keeping a care notebook helps them to get more out of their doctor visits, makes it easier to share necessary health information with other providers like the school nurse, and insures that an emergency plan is in place. For creative ways to organize your care notebook.
- Let your doctor get to know your whole child. Share some good news, as well as concerns.
- There is a lot of confusing information out there about autism. Don't be afraid to ask your doctor about interventions that you are considering, including diet and other alternative approaches. A good way to begin is, "I am wondering what you think about...."
- Ask how your healthcare team likes to field questions between visits: Is there a good time of day to call? Does your doctor prefer email,? Should you plan to talk to the nurse first, and if so, which one?
- Building a relationship takes time. Think carefully before changing your PCP, especially if you have hit an area of disagreement after a history of productive conversation and partnership.
Wandering & Autism,
It's Time to Talk
As virtually any parent of a child with ASD knows, safety is an ever present worry. There are a number of behaviors associated with ASD -- most significantly, the tendency to slip away, often purposefully -- that increase the risk of a serious accident or death.
New Hampshire has been fortunate, in that there are no known fatalities due to elopement among children with autism in our state. But there have been many close calls.
Until recently, this issue was sometimes dismissed because of the anecdotal nature of the evidence. However, a recently published study in the journal Pediatrics found that nearly half of all young children with ASD were reported by caregivers to have eloped, with a substantial number placing themselves at risk for serious bodily harm, including drowning. See summary below, or link here.
There are a several national autism safety campaigns and some excellent tools available on line to assist parents in taking a few simple steps to reduce the incidence of wandering and prepare for a rapid response, should a child go missing. These include inexpensive alarm systems, various identification tags appropriate for children with a wide range of communication abilities and/or sensory issues, car alert decals, and information about registering your child and his or her needs in the 911 data base.
It may help families to know that thanks to Easter Seals, NH, every cadet who graduates from the NH Police Academy receives two hours of training about autism and how to avoid escalating situations that involve someone with autism. Many town police forces have also participated in training.
However, prevention remains the first line of defense. Physicians and other caregivers can help get the word out to families that simple steps make a big difference.
The NH Council on Autism Spectrum Disorders
21 S. Fruit Street
Concord, NH 03301
Copyright (c) 2012 NH Council on ASD, all right reserved