27/01/2026
Totally đAutism Goggles
SELF-DIAGNOSIS IS VALID. RESEARCH BACKS IT UP.
Self-diagnosed Autistics, be confident in your identity.
A major peer-reviewed study published in 2020 examined this question directly. The paper?
âAutism Identity and the âLost Generationâ: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrumâ (McDonald, 2020).
The study included 1,139 Autistic adults, with 893 formally diagnosed and 245 self-diagnosed. Researchers compared the two groups across core areas of lived experience, including identity, self-esteem, stigma, quality of life, and life circumstances.
What they found was striking.
âThe self-diagnosed participants strongly resembled their diagnosed counterparts in terms of autism identity, stigma, quality of life, and self-esteemâ (McDonald, 2020, p. 21).
That means self-diagnosed Autistics understand themselves in the same way, describe their experiences in the same way, and show the same psychological patterns in the data as diagnosed Autistics.
These are meaningful and significant similarities.
The researchers also tested whether the identity tool used in the study (Autism Spectrum Identity Scale) actually worked properly for self-diagnosed participants.
It did.
âThe ASIS demonstrates structural validity for both adults diagnosed and self-diagnosed with autismâ (McDonald, 2020, p. 22).
In plain language, the assessment designed to measure Autistic identity fit self-diagnosed adults just as well. That does not happen if people are misidentifying themselves.
The demographics tell another important story. The self-diagnosed participants were more likely to be older, to be women, and to be employed. These are exactly the populations that are constnatly missed by our current systems!
âThe profile of self-diagnosed participants matches the profile hypothesized for the âlost generationâ of autistic individuals who were not diagnosedâ (McDonald, 2020, p. 21).
Self-diagnosed people are not a random group claiming an identity or label. This is a population that research already recognizes as historically underidentified.
âThe high levels of stigma, low quality of life, and low employment indicate that the self-diagnosed group is experiencing challenges similar to adults with an autism diagnosisâ (McDonald, 2020, p. 22).
People do not accidentally recognize decades of consistent patterns of life experience that include difficulties with coping, masking, burnout, misunderstandings, and identity formation. That kind of awareness comes from living those experiences over and over again.
The paper also acknowledges something Autistic communities have been saying for years: formal diagnosis is not equally accessible. Professionals with expertise in assessing adults are scarce.
âAccess to qualified professionals who provide autism diagnostic services for adults is scarceâ (McDonald, 2020, p. 15).
As well, costs are high, and waitlists are very long. Many people dread being dismissed during the process or have accumulated medical trauma. All of these factors are barriers to seeking an official diagnosis.
The studyâs conclusion is careful but powerful. It is apparen that this research does not dismiss or undermine self-diagnosis. It recognizes that self-diagnosed people likely have the same needs for understanding, belonging, and support as formally diagnosed Autistics (McDonald, 2020, p. 22).
Most of us arrived at that conclusion a long time ago. The only thing left to add is, "Welcome to our community!"