If you are on social media or watch TV, you may have noticed an increase in portrayals of individuals on the autism spectrum, witnessed more discussions about autism, and seen an increase in societal acceptance of autism as a whole.
The rate of autism spectrum disorder (ASD) diagnosis has risen dramatically over the past several decades, with the CDC reporting that as of 2020, one in 36 children have received a diagnosis of ASD in the United States by the age of eight. Despite a lack of global data, UK rates suggest a corresponding increase in adult diagnosis.
What’s still not clear is how much of the rise in diagnoses is due to rising rates of ASD itself, or the result better screening tools and more awareness of how aspects of autism can present across the spectrum.
For patients who receive a diagnosis of ASD as an adult, the experience can vary widely based on how the diagnosis is presented and the availability of support services to help patients and their families move forward.
Being diagnosed with autism as an adult can also produce a complex set of emotions, from relief and acceptance to confusion, disappointment and grief.
We asked Mass General Brigham Child & Adolescent Psychiatry Fellow, Ingrid Kiehl, MD, about her recent review, titled, The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis.
For this review, Kiehl and a team of autistic and non-autistic researchers looked at 24 research studies on the experience of receiving a diagnosis of ASD as an adult, looking for overarching themes that captured the complex nature of this experience and identifying ways to improve it moving forward.
Why are more individuals being diagnosed with ASD now?
We know that the rate of ASD diagnosis has risen, but this doesn’t necessarily mean that more people have ASD. There have been significant changes in diagnostic criteria and access to diagnosis, not to mention much more awareness than in years past.
Autism is being spoken about and portrayed in movies and TV shows much more often than in the past, and in more nuanced ways. This creates opportunities for people to recognize traits in themselves or their loved ones and to ask the questions that lead to diagnosis.
Has social media has had an impact on ASD diagnosis rates?
Social media can have an impact on diagnosis in the same way as other forms of media–through increasing awareness and conversation around ASD. Given how often people turn to social media for connection and information–especially young people–this impact can be powerful.
Social media is part of the collective consciousness now, and as such has great influence over the flow of information and over people’s behavior.
What role does acceptance play in adult diagnosis of autism?
Even though some families have been searching for answers for years, receiving an official ASD diagnosis is a complicated experience, with layers of relief but also confusion, grief and the reshaping of identity.
The way in which a diagnosis is delivered can also have a huge impact on how it is experienced by a patient and family and on how readily that diagnosis is accepted.
This can either pave the way for individuals to integrate a diagnosis into their identity and connect to support services, or it can severely hinder that progression (if it is provided in a confusing, overly authoritative or pathologizing way).
What did you find in your recent study?
Our research showed that an adult diagnosis of autism is a complex experience–not purely positive, but the overwhelming majority of individuals found it to be a net positive in their life. They reported feelings of clarity, relief from blame and the reshaping of identity after decades of confusion and masking.
Individuals also found the diagnosis to be a useful explanatory tool for others. It served as a gateway to connection with others on the autism spectrum and to therapeutic, academic, and professional supports.
Unfortunately, the data also highlighted the fact that the diagnostic process and post-diagnosis supports often fall short.
What do these findings mean for patients now and in the future?
The themes of identity and grief were very prominent in the data. After receiving a diagnosis of autism, many individuals went through a process of grieving and then reshaping their sense of self. Words are powerful, and the manner in which a diagnosis is delivered can set this process up for success or struggle.
Because of this, the diagnostic process should be sensitive to these feelings of loss and grief and provide space and time for patients and families to process and discuss this new influx of information. Many patients felt that they were not respected as experts of their own experience or were not clearly told about implications or next steps after diagnosis.
Given how many individuals in the study found support and belonging in ASD support groups, information for in-person and online groups could be provided as part of the diagnostic process.
Recently, a lot of online autism "self-diagnosis" tests have been popping up on social media. Are these tests accurate? Are they helpful or harmful?
Connecting with others with ASD through social media can be a very powerful experience of belonging.
Social media can also be an avenue for advocacy and awareness, but it is not a reliable avenue for diagnosis. The self-diagnosis tools that pop up on social media are not validated and are not a substitute for a diagnostic evaluation by a trained clinician.
Where do you see your research heading next?
We need more research into the best ways to interface with and support families through diagnosis. Our work took a broad look at the diagnostic process–what is helpful, what is not–so that this might inform specific changes to the diagnostic process that can be piloted and studied. Our hope is that these stories would shape diagnosis for the better.
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