Are self-diagnosed neurodivergent people valid?

Barriers to formal diagnosis

Formal diagnosis isn’t accessible to everyone.

Getting a diagnosis can be expensive, especially in countries where healthcare costs fall directly on the individual. Even in systems with universal healthcare, waitlists for autism assessments can stretch for years.

Bias is baked into diagnostic systems.

Autism has been historically undiagnosed in those assigned female at birth (AFAB), nonbinary people, adults and those not racially categorized as white.

Many professionals still use outdated criteria based on white, cisgender boys, making it harder for autistic people outside those demographics to be recognized.

If the system wasn’t built to see you, how can it help you?

Social and cultural factors also play a role.

Some people might fear the stigma of being labeled autistic or worry about discrimination at work or in personal relationships.

Others might not feel safe sharing this part of themselves even if they strongly suspect they’re autistic.

The concept of an autism registry isn’t a myth. In some US states, professionals are required to register diagnosed autistic individuals in the autism registry.

Having an autism diagnosis, in some situations and depending on what stigma someone ascribes to, may prevent a person from adopting, maintaining custody of their kids, or living the life they want.

An autism diagnosis could put someone’s self-governance at risk.

Contrary to what it seems like on the non-autistic side, the world can be scary from the perspective of a diagnosed autistic person.

Obtaining an autism diagnosis is not without consequences, even when a direct result of hate and ignorance.

The thoughtful process of self-diagnosis

Look, self-diagnosis isn’t something people do on a whim. It’s often the result of a lot of research, reflection and connecting the dots between their experiences and autistic traits.

People read books, dig into academic studies and explore tools like the DSM-5 criteria or the RAADS-R test. Many also seek out autistic communities to compare notes and see if their experiences align.

Self-diagnosis isn’t about slapping on a label for “attention”. It’s about understanding yourself and finding a framework that makes sense of your life.

For many self-diagnosed autistic people, self-diagnosis is an extremely personal and empowering process of self-discovery.

The power of community

Autistic communities are lifelines for so many people, whether they’re formally diagnosed or self-diagnosed. These spaces validate experiences, offer support and provide resources that are hard to find elsewhere.

One thing you’ll notice in these spaces? The overlap in experiences between formally diagnosed and self-diagnosed people.

Traits like sensory sensitivities, social hangovers and stimming aren’t exclusive to people with a piece of paper. The autistic community thrives on shared understanding, not gatekeeping.

Why validation matters for self-diagnosed autistic people

When we validate self-diagnosed autistic people, we make space for them to access

• coping strategies,
• self-accommodations and
• a sense of belonging.

Self-diagnosis can be the first step toward self-acceptance and a better quality of life. Dismissing self-diagnosis weakens the entire autistic community by creating unnecessary divides.

A formal autism diagnosis is only critical when the individual needs to access resources the formal autism diagnosis can unlock, e.g.

• Assisted living facilities for disabled individuals
• Supplemental security income (SSI)
• Utilizing the disability office at a college or university
• Workplace accommodations pertaining to their autism

Otherwise, self-diagnosis may be the only necessary path.

Misconceptions of self-diagnosed autism

Let’s tackle some common criticisms head-on.

1. “People self-diagnose for attention.”

As a diagnosed autistic person myself, I can promise you this: No non-autistic person goes through the obsessive process of determining whether they’re autistic. Non-autistic people don’t wonder like this.

No one dives into hours of research and soul-searching for the fun of it.

Self-diagnosed autistic people spend a lot of time reflecting on their past and present experiences and behavior to compare to the experiences and characteristics of diagnosed autistic people.

It’s a painstaking process to figuring out how their brain works to the point of it becoming a special interest.

2. “Self-diagnosis isn’t reliable.”

While a professional diagnosis has its place, especially for accessing legal accommodations, self-diagnosed individuals often align closely with formal criteria.

Many have done their homework — sometimes more thoroughly than the professionals they’d consult.

This is why, even if a professional screening doesn’t result in an autism diagnosis, a self-diagnosed autistic person may continue pursuing an autism diagnosis until they find a professional who doesn’t rely on certain stigmas.

While a trauma disorder could explain a lot of their traits,

3. “Self-diagnosed autistic people take resources away from diagnosed autistic people.”

…what resources? There aren’t that many.

Do people think diagnosed autistic people get a special subscription box in our mailboxes to celebrate our autism? We don’t get that.

Disability resources are difficult to get one’s hands on and often requires sacrificing all or some of our autonomy. It can be a very dehumanizing experience to the point some autistic people may avoid it.

Unlike what Autism Speaks would like you to believe, not every autistic person is given a free iPad upon diagnosis.

The role of professionals

This isn’t about dismissing the importance of professionals.

Formal diagnosis can be critical for accessing accommodations, medical care or workplace protections.

However, professionals should focus on making diagnosis more accessible and inclusive instead of gatekeeping autism screenings with hefty fees.

The system isn’t perfect. Until it is, self-diagnosis fills an important gap.

Where I stand on self-diagnosis

People know themselves better than anyone else, but professionals do exist for a reason.

If someone identifies as autistic based on thorough research and self-reflection, that’s valid as long as they meet the diagnostic criteria.

I prefer supporting each other and breaking down barriers instead of building that prevent people from accessing strategies that improve their life.

Whether self-diagnosed or formally diagnosed, we’re all part of the same fight: for understanding, acceptance and a world where autistic people can thrive.

Self-diagnosis becomes a problem when someone diagnoses themselves and stops there because they don’t believe diagnosis matters.

It’s a problem when they are against their children receiving a diagnosis, which could give their children equitable access to education.

Self-diagnosis is a problem when a self-diagnosed person projects their unpacked ableism onto other people.