Getting a professional diagnosis is inaccessible to many autistic people.
It’s extremely expensive, and in BC, there is no financial support available for people who don’t have diagnoses already. This barrier keeps out anyone who suffers from income inequality, which includes a lot of people: Folks with cooccurring disabilities, Black and Indigenous people and other people of colour, members of the LGBTQIA2S+ community, women and girls — the list could go on.
A 2017 study by Laura Foran Lewis found that the number one barrier to getting a diagnosis for adults surveyed was the fear of not being believed by doctors.
She concluded that “Professionals must strategize to build trust with individuals with ASD, particularly when examining the accuracy of self-diagnosis.”
The medical system has long focused on young, white boys — at that, often cisgender, heterosexual, and from families with money — who exhibit very specific autistic traits when it comes to research, diagnosis, and accommodations.
This excludes everyone else, and means the most prevalent information we have only helps part of the community. As a result, the more intersections of oppression an autistic person exists are, the more difficult it can be for them to get a professional diagnosis.
Similarly, people can get rejected for a diagnosis due to unfair biases from doctors.
Example: If you’re looking for a referral to a specialist, but the only General Practitioner you’re able to get is racist, sexist, ableist, or homophobic and unlikely to take you seriously or connect you with resources, you probably won’t get a diagnosis in a timely manner.
You can try to get another GP, but Canada is going through a healthcare crisis, and most systems are overburdened. It could take years to even get to the point where you can consider paying a specialist.
These systemic barriers affect both children and adults. Biases within healthcare are a huge factor in why so many autistic girls have gone undiagnosed and, as a result, unsupported.
Autistic people with physical disabilities or chronic health issues might not be able to spend so much time and energy on travel, doctor’s appointments, follow-ups, and everything else that comes with navigating the healthcare system. These limits, and the lack of support for people who can’t be on-site at healthcare facilities, make it hard for some people to get diagnosed.
Lots of autistic people have already been traumatized in the healthcare system before they get a diagnosis and might not trust professionals to give them what they need, even if they can make it to the clinic.
If an autistic person has self-diagnosed, it’s very likely they’ve done extensive research.
Speaking from lived experience, a lot of us are meticulous when it comes to research and being correct about things!
Most of the confidently self-diagnosed people you meet have completed several diagnostic assessments and tools.
A 2015 study by Bram Sizoo et al. found self-diagnostic tools can be quite accurate and specific for correct autism diagnoses.
Many of us have spent years considering whether or not we’re autistic before we say anything to our loved ones. Don’t assume self-diagnosis was made without thought or care for the weight of what it means to be autistic. Being publicly identifiable as autistic is not easy.
Professional diagnosis won’t help everybody
Since it takes so much time and money to get one, a lot of autistic people have to weigh whether or not it’s worth it for them to get a diagnosis.
If they’re not likely to get support from the government or other funds and programs designed for autistic people with diagnoses anyways, self-diagnosis might be all they need to feel secure.
If it’s enough for them, it should definitely be enough for the non-autistic people in their life too.
Being autistic is not a choice
If someone exhibits a lot of autistic traits, they haven’t “decided to be autistic.” They just are.
If they self-diagnosed later in life, their autistic traits might emerge more with time. This could be because the person feels safer to be themselves, and like they’re able to explain their behavior to people around them.
In her study, Lewis says comorbid disturbances such as depression and anxiety are likely amplified when autistic adults “lack self-awareness and support, as is the case for the estimated 50–60% of the population with ASD who remain undiagnosed.”
The whole point of being diagnosed is that you were already autistic beforehand. Diagnoses can be empowering. But if you can’t get that label from a doctor, you’re still autistic. You just haven’t been labelled such within the healthcare system. And I think that’s perfectly okay.
Compared to people who receive formal diagnoses, Lewis’ 2016 study on a similar topic discovered only individuals who were self-diagnosed were likely to struggle with self-doubt and cyclic grief (Lewis 2016b), due in part to facing criticism and lacking support.
This points to why it’s important to support the self-diagnosed autistic folks in your life as they try to find a path to living their best lives.
Addressing criticism of self-diagnoses
Regardless of these points, some challenge the validity of self-diagnosis, saying it’s leading to mass misdiagnoses as a result of “Special Snowflake Syndrome”.
Incredible amounts of information about autism have been spread online over the past few decades, enabling many people to begin the process of self-diagnosis for the first time.
Both autistic and non-autistic people have decried self-diagnosis over the years. Often, they accuse self-diagnosed autistic people of making it up for attention, or simply incapable of knowing themselves or doing adequate research.
While this is bound to happen in rare situations, exhibiting autistic traits has profound negative social consequences. Oftentimes, failing to mask means losing relationships, opportunities, and ways to connect. From that understanding, there doesn’t seem to be any logical motive for misdiagnosing oneself. Why deal with the ableism, lack of job prospects, and social exclusion?
We can be trusted to know ourselves, do our research, and self-diagnose with a full understanding of the weight of what it means to be autistic.
There isn’t just one way to be autistic, but the medical community is slow to reflect our experiences and needs. It’s slow to allow us to lead, or to treat us like adults. And since neurotypical people tend take (neurotypical) medical professionals more seriously than autistic people themselves, they get most of their information from doctors who may or may not be capable of providing care that enriches the lives of all autistic people.
While autistic folks might struggle to embody their most confident and authentic selves, or to be perceived that way by others, that doesn’t mean they lack self-awareness. Their sense of self just might be different than a neurotypical person’s. Whether their communication style reflects that or not will obviously vary, but if we think we’re autistic, being told we’re wrong by a neurotypical person feels condescending and dehumanizing.
It’s especially hurtful if the person making the accusation hasn’t done as much research on autism, because it feels like it’s coming from an uninformed and potentially ableist perspective.
A 2021 study by K. Leadbitter et. al on the autistic self-advocacy and neurodiversity movement concluded that, “with close attention to the needs, preferences and priorities of autistic people, we can move beyond historical divides, misunderstandings and wrongdoings to a place where we value the expertise of autistic people, embrace practices that respect and accept individual neurotypes, and ensure our interventions address the things that matter most to the recipients.” Part of that journey is learning how to respect self-diagnoses.