Legal Matters
Guidance and links to help build a safety net and plan for the future.
whole life care
There are health care professionals who can help families understand and navigate a range of supports, including government programs, service providers, employment, housing and more.
Some medical practices and hospitals have family support clinicians or clinical social workers that can help patients with sensory needs or communication impairments identify support services within the community. Family support clinicians make referrals, collaborate, problem-solve, and connect to supports to help autistic adults and caregivers successfully navigate services across the lifespan. These “wraparound services” address important needs across the lifespan like medical/health concerns, special education, social/behavioral supports, public benefits, legal/financial advice, housing, vocational training, transportation, etc.
Not every medical practice serving adults has a support clinician, but caregivers and self-advocates can encourage the practice to create such a resource. Support clinicians not only improve the lives of autistic adults and their caregivers, but they also ease the workload of the entire practice by ensuring whole-life health for all patients and their caregivers.
Julie M. O’Brien, MEd, LMHC, a Family Support Clinician at the MGH Lurie Center for Autism, helps to educate and support families by identifying a range of home- and community-based supports and resources by age and stage of life. She serves as the liaison between the patients’ provider and parents/guardians/families, and points them in the right direction.
Useful links to find out more about sites and organizations that can help with wraparound services.
Housing
Education
Independent Living and Life Planning
Employment
Service Providers
Legal & Financial Issues
Social Connections & Supports
Support for Families of Those with Profound Autism
In the past, some clinicians believed autistic people do not feel pain the way neurotypical people do, which was to say they thought that people who could not verbally communicate about their pain not feeling pain. We now know this isn’t true. Autistic people often find that when they feel pain they can’t explain it or locate the source of it as easily as most neurotypical people can.
Some autistic people may be more sensitive to pain than their neurotypical peers. This can be especially true for girls and women who have autism. This is why talking about pain is one of the most critical conversations to have with a new provider, and it should happen before the first physical exam.
It’s sometimes hard to distinguish between behaviors that indicate pain and those that seek to communicate another problem. Some of the common pain related behaviors are:
Aggression
Running, pacing, bolting
Jumping, stomping, thrashing
Self-injury, sometimes, but not always at the source of the pain (such as banging/hitting head when having GI pain)
Subtle or strong pinching or grabbing body part that source of pain
Sudden, exaggerated repetitive actions, like hand flapping or throat scratching
Twisting or irregular motions/positions to make accommodations for discomfort
Screaming
Ingestion (e.g. overeating, quickly ingesting food and drink, food avoidance, vomiting, mouthing or eating non-food items)
Crying
Withdraws or becomes very still
It can be helpful to carry a list of pain-related concern to appointments. It might include:
It hurts when people touch me without asking first.
The thought of feeling pain makes me very nervous.
If something will cause pain, please tell me ahead of time.
If something will cause pain, please give me medicine or treatment to help it hurt less.
Pain scares me.
I don’t like needles and need to know if there will be shots or blood draws that might be painful
If a medical appointment involves addressing pain as a problem or symptom, it may be helpful to use a tool known as a pain scale. Pain scales give patients a way to self-report their pain in a way that helps clinicians make an accurate evaluation and diagnosis of underlying health issues.
There are several kinds of pain scales:
One type of pain scale involves patients assigning a number between 1 and 10 to . One would be “no pain,” and 10 would be the worst pain imaginable.
A non-verbal pain scale for adults may also be used to help communicate about and identify the source and severity of pain. Karen Turner, OT and Patient Navigator at Massachusetts General Hospital, explains:
Find more information on legal considerations, navigating insurance, tools for managing information, and other key topics.
Guidance and links to help build a safety net and plan for the future.
Information and links to help navigate insurance.
Information and tools for getting support, advocating and staying organized.