Self-diagnosing autism means identifying as autistic without receiving an official clinical diagnosis from a qualified healthcare professional. This is distinct from receiving an official autism diagnosis, which involves a comprehensive assessment process conducted by trained clinicians using recognized diagnostic tools and criteria.
The assessment for an official autism diagnosis often includes a detailed developmental history, direct observation of the individual’s behavior and social interaction skills, cognitive and language testing, and input from parents, teachers, or other informants.
In contrast, self-diagnosis typically involves an individual recognizing autistic traits in themselves based on their own lived experiences and knowledge gained from resources such as books, online articles, and interactions with the autistic community.
This article will discuss the potential reasons why someone may self-diagnose themselves as autistic and whether self-diagnosis is valid.
Why do people self-diagnose autism?
Below are four potential reasons why people may choose to self-diagnose themselves as autistic:
Strong identification with autistic traits
Aly Laube, an autism advocate for AutismBC, explains how someone may self-diagnose after researching and identifying with the signs of autism.
They note that self-diagnosed autistic individuals have likely already done extensive, meticulous research due to their lived experiences.
When I was considering that I could be autistic, researching autism in itself became my special interest, and this seems like a common theme among other autistic individuals I have spoken to. A motivation to ‘get to the bottom of’ and fully understand something is often a sign of autism, so when someone says they think they are autistic after researching it extensively, I will often believe them!
Dr. Natalie Engelbrecht of Embrace Autism has included multiple online autism tests on her website, alongside a guide on how to score them, their validity, and a discussion of how useful she thinks they are.
The below tests could give someone a good indicator of whether they could be autistic (bearing in mind these cannot replace the official diagnostic process):
- Autism Spectrum Quotient (AQ)
- Executive Skills Questionnaire (ESQ)
- Ritvo Autism Asperger Diagnostic Scale–Revised (RAADS–R)
- Camouflaging Autistic Traits Questionnaire (CAT-Q)
A 2015 study found that self-diagnostic assessment tools can be quite accurate and effective for autistic people, suggesting they can be trusted to know themselves, do thorough research, and self-assess their understanding of what it means to be autistic.
Lack of access to a professional diagnosis
Because of the barriers to accessing an autism assessment, many people may self-diagnose autism.
Depending on where you live in the world, it can be difficult to access a professional diagnosis. For example, in the United States, a diagnosis can be extremely expensive.
In the United Kingdom, you can receive a free assessment but be stuck on a waiting list for a long time, even years, before being seen for an assessment. Alternatively, you can pay for a private assessment, but that can also be expensive.
One study described a woman’s experience of being put on a year-long waitlist by her psychologist and psychiatrist for an autism assessment, only to discover after a year of waiting that there had been a miscommunication between her doctors. The assessing psychiatrist had been told to evaluate her for depression rather than autism. This miscommunication ultimately led her to give up on pursuing an official autism diagnosis at that time.
It is understandable that many people may not think it is worth the time and/or money to confirm their suspicions and may identify as autistic if they feel very strongly that they are.
Many autistic people view receiving a diagnosis as a privilege for those who can afford it or those who displayed more ‘obvious’ traits as a child that it was detected early.
Distrust with professionals
Many self-diagnosed autistic people may have had negative experiences with seeking answers for various things in the past with medical professionals.
While you should generally trust medical professionals, some self-diagnosed autistic people may have been misdiagnosed with a mental health disorder when autism should have been considered as a possible diagnosis.
One study found that adults reported healthcare professionals seemed to have strong stereotypical views of autism presentation and little awareness of how autism manifests differently throughout the lifespan.
They may also find that professionals rule out autism completely, especially if the individual is seen to ‘function well,’ i.e., they have a job, children, or live independently.
The Autistic Woman, who found out she was autistic at the age of 64, explains why she distrusts professionals giving an accurate diagnosis:
- The diagnostic criteria for autism is based on behaviors seen in boys, and doesn’t consider that symptoms may differ in girls and adult men and women.
- The majority of psychologists who diagnose autism only have experience diagnosing children, mostly male children, and don’t know what to look for in adults.
- Online tests, including ones used by psychologists, are available and can help individuals self-diagnose. However, these tests are still based on criteria developed for male children and adults.
- Her own experience with professionals demonstrated their lack of understanding of autism in adults. One brief interview resulted in dismissal of her self-diagnosis, while an evaluating psychologist wouldn’t provide an official diagnosis.
As our understanding of autism develops through research and by listening to autistic voices, trust in medical professionals should also be increased to eventually remove this barrier to seeking a diagnosis.
Self-understanding
A person may self-diagnose as autistic for the purpose of self-understanding, as a way to coherently put together their life story and better understand who they are and how they work.
Paul from “Autism From The Inside,” who was diagnosed at 30, suggests that self-diagnosing can be a way for individuals to recognize that many assumptions others make about them are likely inaccurate.
Additionally, Paul notes that someone may want an autism diagnosis “to help explain yourself to others,” such as friends, family, or in work or social settings.
Obtaining a diagnosis, whether through self-diagnosis or formally, can be a way to communicate to others, “This is what I need. This is who I am. This is how I work.” Having this diagnosis can help an individual be better understood and have their needs recognized and validated.
For example, if you recognize that your potential autistic traits may make it hard for you to engage in small talk, you can explain this to your loved ones so that they do not feel offended by the way you prefer to communicate.
Are people claiming to be autistic when they are not?
It is possible that someone may self-diagnose as autistic to then find out they are not after an official diagnosis. Mistakes can happen, and it may be that something else is a better explanation than being autistic.
However, it may also be the case that the autism assessor has preconceived ideas about autism, potentially leading them to overlook or dismiss the possibility of autism in certain individuals who do not conform to these expectations. As a result, this bias could contribute to a missed or inaccurate diagnosis despite the presence of autistic characteristics.
Some individuals may off-handedly say they are autistic for certain things that can be commonly experienced by anyone, e.g., having an aversion to the texture of mushrooms or liking to use the same mug to drink from every day (while not relating to any other traits). In the same way, you may have heard many people claim they have OCD because they like to keep their house clean.
Claiming to be autistic based on a couple of relatable traits can give others the impression that people are ‘faking’ being autistic, which can damage the community and actual autistic people seeking a diagnosis.
However, suppose someone self-diagnoses themselves as autistic, not because they can relate to one trait, but because they have researched autism and very strongly associate with all of the diagnostic criteria. In that case, it is less likely they are pretending to be autistic.
Melissa Tacia, who self-diagnosed before receiving an official autism diagnosis, raises an important point about the lack of incentive for someone to fake or claim to be autistic when they truly are not.
She argues that autism is not a desirable label that people would seek out for personal gain or attention: “I don’t know why someone would fake this or would claim to have autism when they didn’t. It’s not a shiny thing to have.”
In fact, she notes that there is still a significant amount of stigma associated with autism, which often discourages individuals from disclosing their diagnosis to others.
Is it valid to self-diagnose autism?
Self-diagnosis of autism is generally accepted by a lot of the autistic community as it is not thought to take away from the experiences of those who are officially diagnosed.
If folks find it helps them to self-diagnose I have no personal issue with it. I just hope that before individuals start speaking FOR Autism, they understand it.
‘Andi’
However, some autistic people may question whether stating ‘I am self-diagnosed autistic’ is the best phrasing:
“I prefer the term “self-suspected,” just because they drill it into your brain when you’re taking any medical or psychology courses that you should never diagnose yourself or loved ones because it’s so difficult to be objective.
But you absolutely can learn all you can from reputable sources, speak to other autistics about their experiences, and those who do that and truly suspect they’re autistic are usually right. However, diagnoses can be tricky and lots of diagnoses mimic others in certain ways, so, if possible, it’s best to be assessed by a psychologist who specializes in autism and who is updated on current research. But I also know that’s not possible for some people for various reasons.”
‘Harriet’
“I also think that I am autistic, but instead of saying, “I’m self-diagnosed autistic,” I literally just say, “I think that I am autistic”… Because I am not concrete on this diagnosis (because I’m not a medical professional) it’s avoiding giving people the idea that I know for sure what I have as Autism. However, I do know myself better than anyone else, and 4 years of research has told me that this is a highly possible option.”
‘Andrew’
My thoughts
I personally believe that self-diagnosing autism is valid as long as you have done your research. Seeing a brief list of autistic traits online, resonating with a couple, and then declaring you are autistic is not strong enough research.
However, if you have taken the time to learn about what autism is and what it is not, listened to voices of autistic people, taken online questionnaires, considered alternative answers, etc., and still strongly resonate with autism, there is a stronger case for you actually being autistic.
Likewise, if you face barriers to seeking an autism assessment or there are other reasons you cannot seek an official diagnosis despite feeling strongly that you are autistic, then I think a self-diagnosis is valid.
If you suspect you could be autistic, the identity you give yourself is a personal choice that only you can make.
You are also under no obligation to share this self-diagnosis with anyone – you may want to share with people close to you so that they understand you better, but if you’d rather not, or you’d rather wait until you receive an official diagnosis (if you are choosing to seek one), then that is perfectly valid.
References
Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European archives of psychiatry and clinical neuroscience, 272(2), 187-198. https://doi.org/10.1007/s00406-020-01189-w
Lewis, L. F. (2017). A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults. Journal of autism and developmental disorders, 47, 2410-2424. https://doi.org/10.1007/s10803-017-3168-3
Routledge, F. (2024). Exploring the Self-Diagnosis Experiences of Self-Diagnosed Autistic Women (Doctoral dissertation).
Sizoo, B. B., Horwitz, E. H., Teunisse, J. P., Kan, C. C., Vissers, C. T. W., Forceville, E. J. M.,Van Voorst, A. J. P., & Geurts, H. M. (2015). Predictive validity of self-report questionnaires in the assessment of autism spectrum disorders in adults. Autism, 19(7), 842-849. https://doi.org/10.1177/1362361315589869
