Adults with autism spectrum disorder: Updated considerations for healthcare providers
Release date: August 1, 2019
Expiration date: July 31, 2020
Estimated time of completion: 1 hour
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ABSTRACT
Children with autism spectrum disorder (ASD) eventually grow up and need to make the transition from pediatric services to adult. This is a diverse patient population.
KEY POINTS
- Autism is becoming more common, with most recent statistics showing at least 1 in 59 children affected.
- Asperger syndrome is now included in the category of ASD, with possible implications for coverage of care.
- Some children with ASD get better as they get older, but many do not, and some do not receive a diagnosis until adulthood.
- Diagnosing ASD in adults can be difficult and involves specialists from multiple disciplines.
- Social support is important. Community programs and behavioral therapies can help. Drug therapy has not been rigorously tested and is not approved for use in adults with ASD. Caregivers may also need support.
Other services
Other services provided as an extension or adjunct to the medical home in early adulthood may include customized vocational or employment training, specialized mentorship or support in a college setting, housing support, and psychological services.35
Community-based programs that emphasize leisure have been shown to improve participants’ independence and quality of life.36 Similarly, participants in programs that emphasized supported employment, with a job coach, on-the-job support, collaboration with the participant’s larger social support network, and selection of tasks to match an individual’s abilities and strengths, demonstrated improved cognitive performance, particularly executive functioning,37 and employment.38,39 These programs work best for patients who have mild to moderate symptoms.37,39
Patients with symptoms that are more severe may do better in a residential program. Many of these programs maintain an emphasis on vocational and social skills development. One such long-standing program is Bittersweet Farms, a rural farming community in Ohio for adults with ASD, where individuals with moderate to low function live in a group setting, with emphasis on scheduled, meaningful work including horticulture, animal care, carpentry; and activities of daily living.40
,Studies of patients across the autism spectrum have generally found better outcomes when vocational support is given, but larger and randomized studies are needed to characterize how to best support these individuals after they leave high school.41
Psychological services such as applied behavioral therapy, social cognition training, cognitive behavioral therapy, and mindfulness training may be particularly useful in adults.42–44
Some versions of applied behavioral therapy, such as the Early Start Denver Model,45 have been found to be cost-effective and offset some expenses in the care of children with autism, using play-based and relationship-based interventions to promote development across domains while reducing symptoms.
In randomized controlled trials, modified cognitive behavioral therapy43 and mindfulness44 were shown to reduce symptoms of anxiety, obsessive-compulsive disorder, and depression.
Dialectical behavior therapy, used to find a balance between accepting oneself and desiring to change, may help in some circumstances to regulate emotions and reduce reactivity and lability, although large randomized clinical trials have not been conducted in the ASD population.46
Drug therapy
Medications may be appropriate to manage symptoms or comorbid conditions in adults with ASD. Over 75% adults with ASD have been found to use psychotropic medications.47 However, although these drugs have been approved for treating behaviors commonly associated with ASD, none of them provide definitive treatment for this disorder, and they have not been rigorously tested or approved for use in adults with ASD.48
Irritability and aggression associated with ASD can be treated with risperidone (approved for children over age 5), aripiprazole (approved for children ages 6–17), clozapine, or haloperidol.49
Aberrant social behavior can be treated with risperidone.50 Treatments under investigation include oxytocin and secretin.49
While no approved drug has been shown to improve social communication,51 balovaptan, a vasopressin V1a agonist, has shown potential and has been granted breakthrough status by the US Food and Drug Administration for treating challenging behaviors in adults, with additional studies ongoing in children.52,53
Repetitive behaviors, if the patient finds them impairing, can be managed with selective serotonin reuptake inhibitors.49
Much more study of drug therapy in adults with ASD is needed to fully understand the best approaches to psychotropic medication use, including appropriate classes and effective dosage, in this population.
SEX: UNEXPLORED TERRITORY
The reproductive health needs of people with autism remain largely underexplored.54 Historically, individuals with ASD were thought to have little interest in sexual activity or parenthood, owing to the nature of the core symptoms of the disorder. This has been shown to be untrue, particularly as studies on this topic began to engage in direct interviews with people with ASD, rather than solely gathering information from caregivers or parents. The findings reinforce the importance of broaching this component of health in this population, for the following reasons:
Adults with ASD are at increased risk of sexual victimization, with nearly 4 out of 5 reporting unwanted sexual advances, coercion, or rape.55
They have a smaller pool of knowledge with respect to sexual health. They report56 that they learned about sex from television and from “making mistakes.” They use fewer sources. They are less likely to speak to peers and figures of authority to gain knowledge about sexually transmitted infections, sexual behaviors, and contraception. And they are more likely to use forms of nonsocial media, such as television, for information.55
They report more concerns about the future with respect to sexual behavior, suggesting the need for targeted sexual education programs.56
College-age young adults with ASD who misread communication may be particularly affected by Title IX, which requires schools to promptly investigate reports of sexual harassment and sexual assault, should they struggle to comport themselves appropriately.57 Early and frank conversations about issues of consent and appropriate displays of interest and affection may better equip youth to navigate new social scenarios as they plan to leave a supervised home environment for college or the workforce.
Gender identification: Male, female, other
In one study, 77.8% of birth-sex males with ASD said they identified as men, and 67.1% of birth-sex females identified as women, compared with 93.1% of birth-sex males and 87.3% of birth-sex females without ASD. Many of the remaining individuals with ASD reported a transgender, genderqueer, or other gender identity.58 Some studies have found females with ASD report a gay or bisexual orientation more often than males with ASD.59–61
Adolescents and young adults may be exploring their changing bodies, sexual preferences, and gender roles, and as for all people at this age, these roles emerge against a backdrop of familial and societal expectations that may or may not be concordant with their own projected path regarding sexuality and reproductive health.62
Having the conversation
As with non-ASD patients, a thorough sexual history should be collected via open-ended questions when possible to determine types of sexual activity and partners.
Education of the patient, alongside caregivers and parents, about healthy and safe sexual practices, screening for sexual violence, and hormonal and nonhormonal contraception options are important components of care for this population.
