Over 30 years ago, after our suspicions were confirmed that our young daughter did indeed have autism, we asked a question that many of you also may have contemplated: “What is the normal life expectancy of someone who has autism?” We were given a fairly encouraging yet vague answer: “We really don’t know for sure, but it should be typical for what we know at this point.”
As the years have passed and the autism community has grown, we have learned that there are challenges that impact individuals with autism as they become adults and age.
- Children with Autism Spectrum Disorder (ASD) are four times more likely to have unmet health-care needs (Karpur, Lello, Frazier, Dixon, & Shih, 2019)
- Adults with ASD are at least two times more likely to have unmet health-care needs (Mason et al., 2019)
Individuals with ASD are at greater risk of:
- Cardiovascular disease (e.g., hypertension)
- Elevated rates of premature mortality
(Croen et al., 2015)
Individuals with autism are unique in ways of needing more services (Karpur et al., 2019), due in part to:
- Co-occurring conditions
- Complexities in coordination of care
- Behavioral barriers to accessing even standard services
- Problems caused by polypharmacy, which is the simultaneous use of multiple drugs to treat one or more conditions
Now, with COVID-19 sickening thousands, it is more important than ever to focus on improving the health of our loved ones on the spectrum.
What is the Autism Society of North Carolina doing about health concerns?
The Autism Society of North Carolina trains health-care workers and provider agencies on how to best serve individuals with autism in health-care or institutional settings. Our Advocacy and Clinical Departments offer workshops and trainings as requested by agencies or medical providers. We are now seeing a shift from silos of care to integrated care, where patient care is managed within a Medical Home. A Medical Home, also known as a patient-centered medical home, is a model of care that uses a family-centered, team-based approach to providing coordinated, comprehensive health care to children and adults.
Our free, online Autism and Health toolkit provides information about the benefits of a Medical Home. It also helps individuals and caregivers organize their health information, share important information with their health-care provider, and prepare for appointments so they are less stressful.
The Autism Society of North Carolina also focuses our efforts on more wellness and health activities for families and autism self-advocates. Throughout the state, many of our services offices offer walking or running groups and yoga classes. Our online resources include articles and supporting worksheets:
- Helping Your Loved One Get Active
- Focus on Healthy Habits
- Exercise Goals worksheet
- Healthy activities list
- Exercise Log
Recently, ASNC has added many resources to address concerns specific to COVID-19. You can find them all on our COVID-19 webpage, but here are some highlights:
If your loved one with autism must be admitted to the hospital during this time, the Health Passport Form is a must-have.
What can you do as a family member?
We started at an early age priming our daughter for medical appointments. Because she is deaf and nonverbal, our primary way of communicating with her at the time was using gestures and P.E.C.S. I would use gestures and pictures within the context of the setting. I would also use modeling of expected and unexpected medical procedures such as having temperature and blood pressure taken, getting weighed and measured, and the dreaded throat culture. I also used school personnel to help me. I would ask them to allow her to visit the nurse’s office to practice sitting on the exam table, getting her temperature taken, etc. This helped to lessen her anxiety a great deal. As she got older and was able to understand written language more, we started using Social Stories or social narratives for medical office visits and even for medical procedures. ASNC’s Autism and Health toolkit includes examples of these.
As our daughter aged, we did start to notice that due to her autism and her other differences, she was not able to participate in exercise the way a neuro-typical person might. She also lacked motivation, a common issue for some on the spectrum. However, there were two things she did enjoy: swimming and being outside. As her parents, we took advantage of both of those interests and involved her in them as much as possible and as frequently as we could allow.
She has shown great understanding of expectations regarding medical and dental appointments. She has even had to have a couple of minor surgeries, and we prepared her by using Social Stories with great success. And although she does have some health-related conditions, we are thankful that she has some healthy routines, will take medications, and does well for her medical appointments.
Judy Smithmyer can be reached at firstname.lastname@example.org.
Tags: ASNC, autism, autism advocacy, autism asperger parenting tips, autism behavior, autism health care, autism nc, autism north carolina, autism society north carolina, autism society of NC, Autism Society of North Carolina, Autism spectrum, Autism Spectrum Disorder, Autism Spectrum Disorders, Developmental disability