DOES LATE DIAGNOSIS OF AUTISM AFFECT SELF-ESTEEM?

SELF-ESTEEM WHEN AUTISM IS DIAGNOSED IN ADULTHOOD

By Lirio S. Covey, Ph.D.

Autism is described formally as a lhife-long disorder. Early understanding and knowledge about autism focused on the condition as seen in children but not so much on autism as experienced by adults. Recent years have seen a growing recognition that autism in adults occurs as well. In fact, because there aRe many more autistic persons older than 18 years of age than younger, it follows that there are more adults than children and adolescents who are autistic.

During the past several months, there have been notably more inquiries than in the past received by AAAP regarding autism diagnosed in adulthood. A recent article published in the journal, “Frontiers in Psychology ”, relates to that recent increased attention.

The study was conducted in the United Kingdom, participants were persons who had previously received an autism diagnosis only during their adult years who responded to an online survey. This convenience sample consisted of 151 persons; most were female (77.6%) and more than 50% had attended college or better were White British. The main questions asked in relation to the autism diagnosis obtained as adults concerned their self-esteem, mental wellbeing, and the concept of autism pride. Autism pride was conceived as reflecting pride in autism being a part of oneself and its converse, feelings of dissatisfaction with being autistic.

The researchers found that, among the sample of adult autistics, diagnostic timing (years since the diagnosis) was not correlated with mental wellbeing but was correlated with self-esteem and autism pride. That is, the longer the time from being diagnosed as autistic, the better the self-esteem; on the other hand, lesser years since the time of diagnosis was correlated with greater dissatisfaction with being autistic.

Qualitative research from 54 of the original 151 participants were asked the question of how knowing the autism diagnosis had impacted their thoughts and feelings about themselves. What became apparent was that post-diagnosis, a dynamic process of attitudinal adjustment occurred. Characteristically, the process began with an emotional rejection of the diagnosis brought on by awareness of the stigma associated with autism and frustration that it had taken long to recognize the autism, followed by unfolding self-knowledge and, in time, a new appreciation of their differences from others, and eventual self-acceptance. Contact and support from others during this process exerted beneficial effects on developing self-esteem.

In other words, that the length of time from the autism diagnosis was a predictor of self-esteem indicates that a learning process takes place over time wherein upon learning the diagnosis, the newly diagnosed autistic person begins a self-exploration, understands how and why they are different from others, and can come to a growing appreciation of their positive autistic qualities, even if once presumed by themselves or others as deficits.

Notable limitations of the study that prevent generalization of the findings to other autistics receiving a late diagnosis are: 1) the information was obtained from a convenience and specialized sample – mostly female, well-educated, and White British, and 2) because the data obtained referred to only one time point in the participants’ life, only a presumptive rather than a causal effect of diagnostic timing on self-esteem and autism pride can be inferred.

What also remains to be known is whether, had the autism not been diagnosed earlier or at all, would the ensuing years have also brought on the increase in self-esteem, that is, as a natural effect of the person’s maturation, that is without the autism-related response. What is also of interest, since delayed diagnosis among autistic persons is not uncommon, is that, as suggested by the study findings, obtaining the autism diagnosis later in life can increase rather than decrease self-esteem.

Reference: Kirsten Corden, Rebecca Brewer, Eilidh Cage. “Personal Identity After an Autism Diagnosis: Relationships with Self-Esteem, Mental Wellbeing, and Diagnostic Timing. Frontier in Psychology, July, 2021.