Why is it so hard to get an adult autism diagnosis?

Autism is usually considered a childhood disorder. The majority of discussions about how to identify and manage autistic characteristics are aimed at children with autism. However, these autistic traits don't just disappear when a child turns into an adult. Why, then, is it so difficult to recognize autism in adults, even for an autism specialist?

 

Severity of traits

 

For many children, an autism diagnosis comes when they start showing unambiguous signs of autism, to the point that it interferes with their life and that adults around them cannot ignore it. If autistic traits are milder and less obvious, it is less likely that there will be an attempt to seek expert support. This means the diagnosis is also less likely. This may continue into adulthood, with milder traits easy to dismiss as personality quirks. When autism does not appear as a "disorder", then there may be less reason to diagnose.

 

Masking

 

Related to this is the ability of many adults with autism to "mask", or conceal, their autistic traits. They may train themselves to hold still when they want to stim, to make eye contact, or avoid talking about their special interests, for example. This kind of behaviour is something learnt by people with autism through continued exposure to neurotypical people and society, and therefore by adulthood may have been refined to perfection. Even if they are close to a meltdown in private, or have other concealed health issues, they can publicly present a neurotypical face to the world.

 

Self-advocacy problems

 

When a child with autism is diagnosed, they do not go to the doctor by themselves, and they do not have to explain what they want alone. They generally have a parent or other adult who has observed their behaviour and can represent their interests. Like many people with autism that struggle with communication and social interaction, it may be easier to approach a doctor or other expert when they have someone to advocate for them. Adults with autism are less likely to have someone who can clarify or translate if they have difficulty communicating their situation and needs.

 

Difficulty finding an autism specialist with relevant experience

 

Diagnosis may also depend on the autism specialist you visit. If that specialist does not have specific expertise in adults with autism, it may limit the help they can provide. They may have stereotypical ideas about autism based on their experience with children, or fail to realize how autism can manifest differently in adults. As the larger portion of autism support is aimed at children, specialists who focus on adults may be rarer and harder to find.

 

Lack of diagnostic tools

 

Just as most experts who diagnose autism are primarily trained to work with children, many of the primary assessment tools for diagnosis are designed with children in mind. The questions and observations that characterize a childhood autism diagnosis may not always be appropriate or effective for adults. It can also be difficult for an adult to provide details about their early life, such as when they started talking or their behaviour at school, unless they are with someone who knew them at that time. That is the sort of information normally used when diagnosing autism.

 

Not everyone wants a diagnosis

 

Of course, not every adult with autism who has not received a formal diagnosis is the result of systemic failures or challenges in the system. In some cases, it may be that they see no need for a diagnosis, as they are comfortable with their current life. If autism is not creating difficulties in daily living, or you are not actively seeking official support, a diagnosis may seem like unnecessary stress. It may, however, still be valuable to talk to a doctor to see if pursuing a formal diagnosis from a specialist could be of value.

 

Many things can make it more difficult for adults with autism to receive a diagnosis if they did not receive one in childhood. It is often difficult to access appropriate support or live a fulfilling and happy life due to these difficulties. For others, however, a lack of diagnosis reflects existing comfort and success, and there may be no desire to pursue an official label.