Adults with autism spectrum disorder: Updated considerations for healthcare providers

CAREGIVER STRESS MAY PERSIST INTO PATIENT’S ADULTHOOD

Caregiver burden is a monumental concern for parents or others who may have lifelong primary responsibility for these neurodiverse adults.⁶³ Family members may feel isolated and may feel they have encountered many barriers to services.⁶⁴ Remaining sensitive, knowledgeable, and inquisitive about the types of support that are needed may help forge a trusting relationship between the provider and the family.

Parents of children with ASD have been reported to experience worse physical and emotional health than parents whose children do not have developmental disabilities.^63,65 These disparities have been found to persist  as their children enter adolescence and young adulthood.^66,67 Parents of children with ASD report more anxiety, depression, and distress compared with parents of children without ASD,⁶³ and parents themselves may be affected by ASD symptoms, which has been linked to increased parenting stress.⁶⁸ Some studies have found blunted cortisol responses,^63,69,70 and some,⁷¹ but not all,⁶³ have found elevated blood pressure in caregivers of children with developmental disabilities. Headache, backache, muscle soreness, and fatigue may also be commonly reported.⁶⁷

In our experience, caregivers are tremendously appreciative when provided connections to adult ASD services and support systems as their child ages. The school system and other formal support systems often assist until the time of transition into adulthood. This transition can be stressful for the adolescent and family alike, and informal support systems such as friends and family may become increasingly crucial, particularly if the adolescent still lives at home.^72,73

The affected young adult’s unmet needs, as perceived by the caregiver, have been found to be significantly associated with caregiver burden, whereas the severity of the adult patient’s ASD symptoms has not.⁶⁶ Therefore, it may be helpful to ask caregivers whether they perceive any unmet needs, regardless of the clinician’s perception of the severity of the patient’s ASD symptoms. Providing support to address these needs, particularly those relating to the child’s mood disorders, communication, social needs, safety, and daytime activities, may be the domains of support that most effectively reduce the caregiver burden in this population.⁶⁶

Caregiver positivity, lower stress levels, and increased social support, particularly in the form of friends and family members providing no-cost assistance to caregivers whose children do not live independently,⁷⁴ have been linked to better outcomes for caregivers.^70,74,75 Rigorous studies that examine caregiver burden as individuals with ASD enter mid- and late-adulthood are limited.

THE ROLE OF THE INTERNIST IN CARING FOR ADULTS WITH AUTISM

A major challenge for many adults with ASD is the transition from services provided during childhood to those provided in adulthood. While children with autism have subspecialty providers who diagnose and manage their condition, including developmental-behavioral pediatricians, pediatric neurologists, and child psychiatrists, adults with autism may have fewer options.

Autism centers are becoming more available across the nation, and many provide care across the life span. However, depending on a patient’s needs, the primary care provider may need to manage residual symptoms as the patient transitions from pediatric to adult care, ultimately deciding when and where to refer the patient.

The patient’s family should pay close attention to function and mood around the time the patient leaves the structure of high school, and they should build rapport with a primary care provider they can turn to if problems persist or arise. Referrals for behavioral therapy and for social work, job training, and vocational support can greatly benefit patients as they transition to young adulthood. Referrals and suggestions for social support can also help caregivers.

Medical care

Deciding when and how to medicate the patient for symptoms of autism and related behaviors necessitates consideration of the patient’s impairment, side effects of the medication, and the impact medications may have on the patient’s other conditions. Disordered eating, mood problems, anxiety, and attention-deficit/hyperactivity disorder should be considered, and, as in all patients, regular screenings of mental health status should be conducted.^76,77

Comorbid medical conditions may cause worsening of a patient’s known behavioral symptoms or may precipitate new behaviors or aggression as a result of pain or discomfort, particularly in patients with limited speech. A change in stereotypes or increased irritability warrants a thoughtful investigation for a cause other than ASD before adding or increasing behavioral medications. Common comorbid conditions include gastrointestinal distress, most commonly constipation and diarrhea in an idiopathic ASD population, with increasing ASD symptom severity correlating with increased odds of a gastrointestinal problem.⁷⁸ Allergies, sleep disorders, seizures, and other psychiatric conditions are also frequent.⁷⁹

Preventive care, including vaccinations, should be given as scheduled. Caregivers and patients can be reminded if needed that vaccines do not cause or worsen autism, and vaccination is intended to improve the safety of the patient and those around them, protecting against potentially life-threatening disease. Regular dental care visits, particularly for patients who are using medications that may affect tooth or gingival health,⁸⁰ and regular visits to an optometrist or ophthalmologist for screening of vision are also advised.

Adverse effects. Weight gain and metabolic syndrome are common adverse effects of medications used for behavioral management, and the primary care physician may uncover diabetes, cardiac disorders, and hyperlipidemia. Patients with ASD may be particularly sensitive to the effects of medications and therefore may require a lower dose or a slower titration than other patients. Working with a behavioral team, careful weaning of psychiatric medications to the minimum needed is strongly recommended whenever possible.⁸¹

TAKE-HOME POINTS

As more adults with autism enter society, they may require varying levels of support from the healthcare community to ensure that therapeutic gains from childhood persist, allowing them to achieve maximal functional potential.

Adults with ASD may have a high, normal, or low IQ and intellectual capability. Knowledge of this and of the patient’s symptom severity and presence of comorbid psychiatric and other health conditions can help the clinician guide the patient to appropriate social services and pharmacologic treatments.

Individualized support in the workplace, as well as education regarding sexual health, can help improve outcomes for affected individuals.

Caregiver burden for individuals with autism can be high, but it can be mitigated by social support.

Further research regarding appropriate diagnostic instruments in adulthood and appropriate treatments for impairing autism-related symptoms across the life span may be particularly helpful in supporting this patient population.