Reasons for a lack of diagnosis

There are many reasons that an autistic person isn't diagnosed or open about being autistic.

*to-do - decide on we or they and make all pronouns consistent

Some autistic people may not know what autism is. They just know that they feel different, and maybe wrong. They may call themselves aliens, or eccentric, or weird, or sensitive. But they don't know that the name for what they experience is autism.

They may have read the Diagnostic and Statistical Manual (DSM) and the list of autistic traits. But they may have misunderstood what those traits mean, because they aren't written in language that is clear to someone who isn't in the medical field. They may also assume the DSM is a comprehensive list of autistic traits, and that they need to meet every diagnostic criterion to be considered autistic, even though this isn't true.

Some autistic people are labeled talented, gifted, or special. We may feel that, because of those labels, we shouldn't ask for help. If we don't ask for help and communicate our struggles early, professionals do not understand how much we are struggling. And when we do ask for help, professionals do not take us seriously because we didn't make our needs clear in the beginning. Seeking an autism diagnosis as an adult is a way of asking for help.

The people around the autistic person may not know what autism is, either. They may think of autistic people as unemotional and unempathetic. When they think of autism, they may think of little boys who like trains and numbers. They may not recognize how different autistic people can be.

We may have already been diagnosed as autistic, but our families hid the diagnosis from us. They may have hoped we could live a "normal" life without knowing we are autistic or receiving help for it. Our families may be ashamed of our diagnosis, and they hid it to save face in their communities. They may have also simply lost the paperwork proving we were diagnosed, and chosen not to tell us.

Some autistic people don't have access to any diagnostic services. They may not have money or insurance to pay for the appointments. They may not have transportation to the appointments - whether that be a car, public transport, or someone to drive them. They may not have a computer or a stable internet connection for the online appointments.

Some autistic people cannot communicate with autism diagnosis services. They may find it impossible to make a phone call, send an email, or visit the office. This often happens when autistic people are disabled in other ways besides autism.

Some adult autistic people don't have access to services for adults. The experts in their area may only diagnose children, and they may even believe that adults cannot be diagnosed with autism, even though this isn't true. Late-diagnosed autistic people can be told they are not autistic by one professional, and later be diagnosed by another.

Some autistic adults have been through the diagnosis process for children. But their interview and assessment were designed for children, not adults. They will have been scored against the expected results of a toddler or preteen. Therefore, the results of such an assessment may be unreliable.

Some autistic people aren't in a supportive environment. Their caretakers may say, "you're not autistic. You're just being dramatic or going through a phase. I refuse to help you get an appointment." Sometimes these caretakers may call the autistic person slurs and other stigmatizing language. Because of this, the autistic person can feel there is something wrong with them, and there is something wrong with seeking a diagnosis.

Autistic people may be a part of cultures that believe that autism is fake, or that it is just another way of saying oversensitivity and laziness. They may say that autism is an embarrassment or something to be ashamed of. They may even claim that autism is the work of the devil. In these cultures, it can be dangerous for someone to be openly autistic. If they are diagnosed, they may become the victims of harassment and violence.

Some autistic people are in environments that are biased toward autistic people, but in ways that make us uncomfortable. We may worry about people telling us we are superhuman, brave, inspiring, or amazing, in ways that we can find awkward and condescending. We may even encounter people who pursue us romantically or sexually because they know we are autistic, and they think it means we are easy, quirky, vulnerable, submissive, or tolerant of abuse. We may wish to avoid a diagnosis to avoid these awkward and dangerous scenarios of other people fetishizing us.

Some autistic people feel they don't need a formal diagnosis. They may not want to spend the money or time pursuing an official diagnosis. They may feel they have gotten through life with minimal help so far, and they wouldn't benefit from the diagnosis or any services that come with it. But that doesn't make them less autistic.

Some autistic people feel that an autism diagnosis may change how they see themselves, and how other people see them. They may not want to feel like an "autistic person". They would rather preserve their identity separate from autism.

They may be in the process of a diagnosis, but they have to wait months or years for their appointments. While waiting, they still need help and support. But because they aren't diagnosed, they may not qualify for help.

Some autistic people want a diagnosis, but believe they won't be diagnosed. They may believe that medical professionals are less likely to diagnose people born as female, people of a certain ethnicity, or adults. For autistic people, rejection can be especially difficult. They would rather keep autism as part of their identity than risk having it taken away, should a medical professional say they are not autistic.

If an autistic person is not diagnosed, they are still autistic.

They can be especially vulnerable to misinformation, invalidation, harassment, and abuse.

Undiagnosed autistic people

Some undiagnosed autistic people call themselves "questioning" or "suspecting". This indicates that they believe autism may be a good explanation of their way of life, but they aren't sure. They may believe it is right to get the opinion of a medical professional to officially call themselves autistic.

Some undiagnosed autistic people call themselves "self-diagnosed". They believe that, since they are the ones experiencing their life, they know their experiences best. They have researched autism extensively and may know more about it than some medical professionals. They are sure that they are autistic, even without the opinion of a medical professional.

Some people claim to have autism, when in fact they do not. This can happen intentionally, by lying and inventing personal medical histories and symptoms; or unintentionally, by accepting misinformation, or misinterpreting good information, about what makes someone autistic. People who claim to have autism but do not can spread further misinformation. This can make truly autistic people, diagnosed or not, feel worse about ourselves. The allistic people around us may be dismissive of any undiagnosed autistic person. We can find it harder to be diagnosed, because the people around us call us liars and fakers. It can even make officially-diagnosed autistic people reject undiagnosed people.

While diagnosis-faking is an interesting phenomenon that is worth studying, it is separate from the discussion about autism. The prevalence of autism-faking cannot interfere with efforts to make diagnostic interviews more accessible and fair, and resources like sensory equipment and mental health therapies more available. I believe that undiagnosed people who are genuinely questioning whether they are autistic should always be supported. Self-diagnosis was not my choice while I was undiagnosed, but I can still empathize with their struggles and desires. And people who are faking autism need help, too, even if not for autism.

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