What Is It Like to Get an Autism Diagnosis Later in Life?
For some adults, a first-time diagnosis of ASD is both good and bad.
Posted Nov 15, 2019
Although autism spectrum disorder (ASD) is often thought of as a childhood disorder, there is an increasing number of older adults who are being diagnosed for the first time. This growing demographic makes it critical for clinicians, family members, and friends to consider the impact of such a diagnosis.
The UCR SEARCH Center has had a number of calls from older adults seeking a first-time diagnosis. Though our center primarily focuses on children ages 3-12, we have seen a few older adults and have heard from them what they hope to gain from an ASD diagnosis and why it matters to them to understand whether or not they meet the criteria for ASD.
Nine adults, aged 50 or older, who were recently diagnosed with ASD are the focus of a new journal article by Steven Stagg and Hannah Belcher.
Why the increase?
Before discussing this research paper, one important question to answer is: Why is there an increasing number of older adults seeking an ASD diagnosis? The answer likely lies in previous diagnostic manuals having less clear and/or accurate descriptions of ASD compared to our current diagnostic criteria. Prior to 1980, ASD was not specifically mentioned or defined in a diagnostic manual used by clinical psychologists and psychiatrists (known as the Diagnostic and Statistical Manual, or DSM). Prior to 1980, ASD was part of the description of childhood schizophrenia. Although we now know that childhood schizophrenia is entirely different from ASD, that incorrect understanding of ASD likely led to a lack of accurate diagnoses.
In the third version of the DSM—published in 1980—ASD was defined as having three core features:
- Lack of responsiveness to other people
- Severe impairments in language development and/or the presence of peculiar speech patterns
- Bizarre responses to the environment (e.g. peculiar interest/attachment to animate or inanimate objects)
In addition to these features, DSM-III specified that these symptoms must develop within the first 30 months of life. Although these features are closer to our current definitions of ASD, they are still lacking in sufficient detail.
It should not be surprising, then, that many individuals born before 1980 (or close to 1980) who would now be thought to have ASD (but who do not have an intellectual disability) were not diagnosed with ASD as children. For those adults (now in their 40s or older), getting a diagnosis of ASD is likely challenging, as ASD is rarely diagnosed in late adulthood (reasons for these difficulties are discussed in a previous blog post here).
With that background in mind, we can discuss the findings from the recent article. The authors interviewed nine adults about their experiences of obtaining an ASD diagnosis for the first time. The authors found that across the interviews, five overarching themes emerged:
- The adult remembering themselves as having early signs/symptoms of ASD
- The adult being aware that he or she was different from peers
- The process of receiving a diagnosis
- The usefulness of the diagnosis
- Support and coping
I want to briefly summarize the findings from themes 3-5, as they are relevant to these adults' lived experiences with getting a diagnosis.
Receiving a Diagnosis
For the adults interviewed, receiving a diagnosis was met with mixed emotions (depending on the interviewee). Some adults reported feeling relief, others noted that the diagnosis put their previous experiences in context and helped explain some of the difficulties they had experienced. However, there were also reports of feeling shocked, having to re-think their self-perception, and trying to adjust to a new reality.
Usefulness of Diagnosis
The participants reported that the diagnosis helped them understand their own behavior (and their previous experiences) in a framework of ASD. The adults reported feeling as though they had explanations for things that were previously unexplained, and that the diagnosis improved their self-understanding and coping skills. However, there were also reports of losing confidence and feelings of worthlessness.
Support and Coping
Unsurprisingly, adults in the study reported feeling overlooked by support services and as though there were not services available to them, as most services for ASD focus on children.
This article echoes sentiments I have heard from adults who call the clinic seeking a first-time ASD diagnosis. The adults I have spoken with noted that although a first-time ASD diagnosis would not help them obtain new or different services, the diagnosis (or being able to rule out ASD) would help them explain and understand both their own behaviors and previous interactions/experiences with others.
Other adults have shared that the suggestion to be screened for ASD came from their therapist, because it would help the therapist figure out how to approach treatment. This is important, as a therapist's approach to treatment will often differ depending on the condition being treated.
For example, if a therapist is seeing an adult who is experiencing social challenges and has been diagnosed with social anxiety, the therapist will likely utilize cognitive-behavioral approaches that combat the patient's fear of being judged negatively by others. If, on the other hand, a therapist is seeing an adult who is having social challenges and has been diagnosed with ASD, the therapist is more likely to provide concrete steps/advice to help improve the adult's social skills and awareness of social cues. In such a case, the difference between the adult having a diagnosis of ASD and being undiagnosed could have a large impact on the success of the therapist's treatment strategy.
Despite the difficulties inherent in diagnosing older adults with ASD, this recent research underscores that an accurate diagnosis can be useful, even if painful. I hope more adults are able to be accurately diagnosed, and that clinics become more comfortable with screening individuals in this age group.
American Psychiatric Association. (1980). Diagnostic and statistical manual of mental disorders (3rd ed.). Washington, DC: Author.
Steven D. Stagg & Hannah Belcher (2019) Living with autism without knowing: receiving a diagnosis in later life, Health Psychology and Behavioral Medicine, 7:1, 348-361, DOI: 10.1080/21642850.2019.1684920