Until recently, autism self-advocacy has been mainly limited to autistics and neurodivergent people who had received a diagnosis of autism or one of its historic predecessors from previous editions of the Diagnostic & Statistical Manual of Mental Disorders (DSM), such as Asperger’s Syndrome, Rett Syndrome, PDD, or PDD-NOS. The autistic community is now recognizing the value of allowing people who identify as autistic, but who have not received a formal diagnosis, in participating in self-advocacy with equal authority as somebody who had been formally diagnosed as autistic. We recognize that there are too many financial and demographic barriers to autistic people receiving a diagnosis to justify excluding people who had not been diagnosed.
If diagnosis was a prerequisite to be a part of the autistic community, the entry fee would be the cost of a Disney vacation. Diagnostic testing for neurodivergence costs thousands of dollars to pursue, and at the end of the testing you might not even get the right label. This means that many working class and impoverished autistics who could not possibly afford the luxury of testing would be excluded from our community. This would drop our numbers to nil; 86% of autistics are unemployed and most of us live on income support that does not even cover our basic needs. Too few of us have the financial capacity and privilege to receive diagnosis.
We also recognize that whether or not a person receives a diagnosis has very much to do with their demographics such as gender and ethnicity, and that in many cases it is a matter of privilege to receive a diagnosis. Teachers, caregivers, and doctors may see somebody struggling to keep up in class, and struggling to make friends, and blame it on “laziness”, “lack of focus”, or “distraction”, particularly more often if the person is from a minority ethnic group. Authorities from dominant demographic groups, holding prejudices against minority groups, may see the struggles of an autistic person from a minority ethnic background and believe that their behaviour is typical of someone from that ethnic group. When autistic behaviour is blamed on these factors, neurodivergence is left out of the question, and testing for neurodivergence is not pursued.
We must also observe the Lost Generation of autistic women, whose autism was diagnosed as mental illness or a personality disorder, if it was diagnosed at all. In many cases, autistic women are diagnosed as not autistic, because the behaviours that a doctor is testing for are the autistic behaviours as they present in men. An autistic woman may list all of their divergent traits, only to be given another diagnosis or released without any diagnosis, because the doctor is just not familiar with how autism presents in women.
There are also ethical concerns about gatekeeping the autistic community based on diagnosis. Is the label of “autistic” really something that should be passed on to us from an authority figure? A scratch on paper that entitles us to special education planning and limited home supports? Or is it something that is undeniably a part of us, and existed long before autism was “discovered” by the medical community? Is it a label or a lens through which we see the world? In general terms, even doctors who specialize in autism just do not know enough about our experiences to be a guiding authority on who is an autistic and who is not. The Spectrum is universal, and expanding. Nobody understands The Spectrum, you just know how it feels to be on it.
When you are autistic, you know when you are among your own tribe and your own people. You feel welcomed, accepted, and able to be authentic in a way that you cannot be with other people. This community spirit is the freedom to finally live without having to pretend to be somebody else. It is a heartfelt, spiritual feeling of coming home. And you feel it no matter what a piece of paper from your doctor says.
Too many evils are committed when we hold the gate closed from people who are not diagnosed; diagnosed autistics are predominantly white males from western democratic nations, and we will continue to upstage the rest of the world’s autistic stories if autism self-advocacy remains gated on these terms. We will exclude many people who cannot afford testing and who fall out of the criteria for funding for testing. To develop and expand a global autistic community, we must recognize that autism is bigger than any one person, and that it is not up to one person to say who is autistic and who is not.