Receiving an autism diagnosis as an older adult, after years of possibly masking symptoms, may seem daunting — but it can also be a relief and a path to support.
In the last 40 years, since autism was first mentioned in the DSM-III (1980), our understanding of this complex diagnosis has increased as more and more Americans receive it.
Many older adults who were not diagnosed as children are now receiving, or seeking, a diagnosis. Because most autism research is focused on children, there is a lack of research both about the needs of older adults with autism as well as the challenges faced by an adult who receives a diagnosis late in life.
Research, including a
Various physical conditions associated with aging are more common in older adults with autism than those without, including:
- heart disease
- cognitive disorders like dementia, including Alzheimer’s disease
Many older adults who have not received a formal diagnosis of autism are undergoing treatment for anxiety, mood disorders, and difficulties with socializing. Mental health concerns are frequently given as the reason behind their diagnosis, rather than autism.
Without a formal autism diagnosis, older adults can miss out on support services that can help them obtain housing and medical care, including therapy and other forms of mental health care.
While autism affects everyone differently, and the level of support an autistic adult needs depends on how much care they need, many people will find benefits in establishing a safety net of support.
Some of the symptoms of autism in older adults are the same symptoms doctors screen for in young children, including poor social skills and repetitive, restrictive behaviors.
Indeed, many adults diagnosed with autism later in life note that their symptoms were evident from a young age, according to a 2019 study.
But children today are usually diagnosed when families or pediatricians observe missed developmental milestones or behavioral changes.
Adults who were not diagnosed as children often learn to mask their autism symptoms in order to appear neurotypical and to fit in better socially. This can be intensely stressful, and that stress can lead to other mental and physical health problems over time.
Older autistic adults are
Additionally, adults who go undiagnosed may remain socially isolated, lack higher education, and continue to live with relatives.
Other symptoms and signs of autism in adults may include:
- social isolation — some
40%of older autistic adults spend little or no time with friends, according to CDC data
- feelings of social alienation
- feelings of social rejection
- adherence to particular routines and becoming upset if routines are disrupted
- obsessive interests
- poor executive functioning; a lack of organizational and planning skills
The screening tools that can diagnose autism in children as young as 18 months old may not be applicable for adults, whose symptoms may be both more pronounced and better camouflaged. There are currently no diagnostic standards for autism in adults.
To obtain a diagnosis, a doctor may observe your behavior and ask you questions about your life, including about social and emotional behaviors, your routines, and your interests. They may refer you to a psychologist or psychiatrist for further evaluation.
Unlike a childhood diagnosis, in which a family member can often relay real-time discussions of missed developmental milestones or behavioral and emotional changes, an adult diagnosis may depend on that adult’s own recollections of their childhood behaviors and other symptoms.
Employment and relationship issues should be covered in diagnostic screening for autism in adults.
The feeling of being “alien” is common among adults with autism, many of whom have masked symptoms for years to better fit in with their peers.
A healthcare professional may screen for autism when adults are receiving treatment for anxiety that’s rooted in changes to their routine, the anticipation of change, or sensory issues.
Generally, a course of psychotherapy (talk therapy) should accompany an adult autism diagnosis. Therapy can help them manage what may be a real shift in how they perceive themselves in relation to their world.
Once you have a diagnosis in hand, finding a doctor with
Online support groups for adults with autism can empower you after a diagnosis and boost your self-esteem. When you have previously been on the outside of the diagnosis, unable to understand why you feel the way you do, finding a place where feel a sense of belonging and where people understand you may be revelatory.
Masking autism symptoms can result in years of stress on your body and mind. Pursuing a diagnosis may make you healthier than you have been, both physically and mentally.
Receiving an autism diagnosis as an adult may come as a shock or as a surprise, but many also report that it comes with relief.
Receiving a diagnosis may mean you feel a new sense of control and the ability to better plan and manage certain situations.
Additionally, receiving a diagnosis may open up new avenues of support for you, whether they provide physical support like housing and medical care, or emotional support, like an online support group.
The Organization for Autism Research (OAR) website contains several resources for navigating autism as an adult, including assistance with employment, education, and physical, mental, and sexual health.