It can be hard to decide whether to seek an autism diagnosis as an adult, writes researcher Sara Meyer.

You may have lived many years without thinking about yourself in terms of autism, and there might not be an easy place to start. It may be hard for you to relate to the traditional picture of autism, which may be something like a little boy fixated on trains. At the same time, you may feel you don’t fit in with your peers either, which can create a sense of general disorientation.  

For many Autistic people, even those who are practiced at hiding their autism and living somewhat independent lives, diagnosis is life-changing, providing a new language for their experiences, and offering a new identity.  An autism diagnosis often comes as a relief, reducing distress and increasing self-acceptance. For me and other Autistic people like me, for example, receiving a diagnosis put an end to my worries about being a “bad person”. All my life, I had run into trouble for saying the ‘wrong thing’, having the ‘wrong’ emotional reactions, and mixing up my words.  

For other Autistic people, self-diagnosis is sufficient. Diagnosis can be costly, it can take a lot of time, and it can sometimes carry professional or medical risks. Sometimes, all you need is confirmation for yourself- and you may not need to depend on a professional to provide that. Let’s go through some of the pros and cons around seeking an autism diagnosis as an adult in more detail. 

Pros of getting an adult autism diagnosis

Pro: Self-acceptance and understanding 

One of the major benefits of receiving an autism diagnosis is a sense of self-acceptance (Huang et al., 2020). It can be an immense relief to finally access the language and the knowledge to explain your experiences, strengths, and challenges. You may also be able to adjust your expectations for yourself- reducing social demands, for example, and seeking out work in a field of interest. An autism diagnosis can also be a wonderful opportunity to throw off negative beliefs about yourself or labels that you have been carrying for a long time. 

It’s important to note, though, that feelings of self-acceptance may not come right away; a study of Autistic adults found that acceptance of diagnosis was correlated with the length of time since diagnosis. This suggests that self-acceptance following an autism diagnosis may happen slowly, as the person processes their past and contemplates their future in the light of the diagnosis (Corden, Brewer & Cage, 2021).

Pro: Connecting with other Autistic people 

Another reason that Autistic adults may seek an autism diagnosis is to connect with other Autistic people. While all Autistic people are unique, we have certain things in common- and sometimes, it can be a huge relief to realise that you are not alone. 

Recent research has focused on the degree to which Autistic people can benefit from socialising with other Autistic people. Autistic participants in several studies, including qualitative research, have disclosed that they feel increased comfort, ease, and competence when interacting with other Autistic people compared to neurotypical people (Crompton et al., 2020). 

These findings may be explained by the double empathy problem (Milton, 2012). Milton’s research suggests that rather than being the fault of Autistic people and their “poor” communication skills, communication breakdowns between Autistic and non-Autistic people may result from a mutual lack of understanding. In other words, while Autistic people struggle to understand the perspectives of non-Autistic people, non-Autistic people also struggle to understand and relate to Autistic perspectives. When Autistic people socialise with other Autistic people, this empathy barrier is not present, and connection tends to flow more naturally.  

That being said, there is no need to get a diagnosis in order to meet other Autistic people. The vast majority of groups for Autistic people accept self-diagnosis as valid and fully include all Autistic people from all kinds of different backgrounds. 

Pro: Access to support and accommodations 

Sometimes, an autism diagnosis can facilitate access to support and accommodations. These could be accommodations in the workplace or publicly funded disability services, depending on the needs of the individual.  

 As stated in the Human Rights Act 1993, employers in New Zealand and elsewhere are required to make reasonable accommodations for employees with disabilities, where this is necessary to meet an employee’s needs. The New Zealand Disability Strategy, a guiding document, also affirms the rights of Autistic people in the workplace. It should be noted, however, that getting an autism diagnosis is no guarantee that you will receive support or modifications in the workplace or with day-to-day living skills. Workplaces vary widely in how they accommodate disability, and supports and services are distributed based on individual needs and circumstances.

Pro: Unmasking 

Masking is the process of hiding Autistic traits or attempting to appear neurotypical. Most Autistic adults, especially those who are late-diagnosed, engage in masking behaviour.  

Not all masking is problematic- we all need to present ourselves in certain ways in professional settings, for example. But pervasive masking is exhausting, and it takes a massive toll on an Autistic person’s energy levels, mental health, and wellbeing. According to a survey of Autistic adults who regularly engaged in masking or camouflaging, most experienced masking as harmful and stressful. One key finding was that it made participants feel disconnected from their true self, to the extent that many of them had no idea who they were at all. Masking was also associated with suppressing sensory needs, and suicidal ideation (Miller, Rees, & Pearson, 2021).   

Receiving an autism diagnosis can be an opportunity to unmask and live a more authentic life. That said, this can be achieved through self-diagnosis as well. 

Cons of getting an adult autism diagnosis 

There seems to be a lot of literature around the benefits of diagnosis, and less around some of the costs or drawbacks. Here are some of the reasons why getting an autism diagnosis may be more trouble than its worth.

Con: Cost 

Getting an autism diagnosis as an adult is costly. Unless you have an intellectual disability, you will probably need to see a private psychologist or psychiatrist. Not everyone can afford this, and even those who can afford it may not be willing to part with this amount of money. The cost for an autism diagnosis as an adult can be upwards of $3000. To help reduce costs, some psychologists offer a cheaper option known as a brief autism assessment. This cannot be used to obtain a formal autism diagnosis but may be worth doing if the primary goal is self-understanding and acceptance. To access autism-related supports, however, you will need a formal autism diagnosis.   

Con: Inaccessibility  

Getting an autism diagnosis may require being on a waiting list for several years- depending on which pathway you choose. Many psychologists who are qualified to diagnose autism in adults are not taking on new patients as they are overloaded with requests. You might have to travel a long way to get an appointment, usually more than once.  

Then, once you get your diagnostic appointment, you may be required to do a lot of uncomfortable things. You may be required to talk about your childhood in detail, take a large battery of tests, and share a lot of information about your experiences and struggles. For many Autistic people, this can be a really difficult thing to do. 

Con: Misdiagnosis  

When it comes to adult autism, there is some risk of misdiagnosis. This risk is particularly significant for women and people of colour, who may not fit stereotypical descriptions of autism. Autism can also be very challenging to diagnose, especially in adults. A comprehensive personal history is required, but it may be difficult for adults and their aging parents to recall their early life experiences. Most of the existing research and literature around autism is still focused on children. 

There are also several different ways to interpret the traits and features of autism. We have to consider, for example, that Autistic people may deploy masking or camouflaging strategies, often unconsciously, even during a diagnostic appointment for autism. They may have learned to make eye contact and use scripts to support their communication with the clinician. When individuals show advanced cognitive abilities and are able to use coping strategies to function independently in daily life, they may be very difficult to diagnose (Fusar-Poli et al., 2020).  

Many Autistic adults face the risk of not receiving a diagnosis, sometimes because their autism is not obvious to the professional they are seeing. Others may be misdiagnosed with other conditions such as ADHD, anxiety, or even a personality disorder, schizophrenia, or bipolar disorder (Fusar-Poli et al., 2020). Some Autistic adults may feel that they know more about themselves than the doctor does, and do not learn anything new from the diagnostic process. For these individuals, self-diagnosis may be sufficient. 

Con: Negative or mixed emotions  

While many adults who have newly been diagnosed with autism report positive emotions, others describe shock, anger, confusion, and grief (Huang et al., 2020). The reaction that each person has to receiving a diagnosis is unique to them. Some people have a very hard time coming to terms with the diagnosis, and may struggle with their mental health for a period of time. It is important to note that with sufficient time and support, most Autistic people do eventually move beyond these feelings and into a place of acceptance.  

Summary

The decision to seek out an autism diagnosis is not an easy one. In many cases, you may very much want to get a diagnosis, but feel constrained by cost and other insurmountable barriers. New Zealand research has identified increased access to diagnosis for adults as a key area of need (Autism New Zealand, 2020).  

In other cases, however, you may simply feel that getting a diagnosis is not worth it, and that it is enough to self-identify as Autistic. If you’re anything like me, you have probably done extensive in-depth research and self-examination before even thinking about approaching a professional- and that research will likely exceed anything that happens in the diagnostic appointment. The Autistic community accepts self-diagnosis as valid and recognises the immense capacity of Autistic people to understand and define their own identities.  

Whatever you decide, know that you are not alone. The Autistic community is full of Autistic people who discovered their autism as adults, whether formally diagnosed or not. Many of us understand how difficult it is to access a diagnosis, and have been through a lengthy process of researching, deliberating, waiting, and considering before we were able to confidently recognise ourselves as Autistic. If this is you, spending time in Autistic spaces and talking to Autistic people may help you work out your next steps.  

• Have more questions about autism diagnosis for adults? Altogether Autism provides evidence-based, personalised information about Autism for people of all ages. Our information services are completely free. Click here to request information.