Hello, and welcome back to The Autistic Writer. One of the most hotly debated autism-related subjects on social media is that of self-diagnosis. Powerful arguments are regularly made both in favour of and against self-diagnosis. But many of these debates miss a central point.
Here, I will examine the most robust positions on either side of the debate, but more importantly, I will suggest a relevant point that is often ignored:
The debate over self-diagnosis of autism often assumes that formal diagnosis and self-diagnosis are trying to accomplish the same thing. I think that assumption deserves examination.
my story
When I spoke to my GP about getting a referral for an autism assessment, she asked me why I wanted the referral. We had a long conversation, and at the end, she told me that a referral was definitely appropriate in my case. I ended up spending nineteen months on the waiting list for an NHS assessment. That gave me a lot of thinking time, and a lot of time to start doing some research into autism.
It’s difficult starting research on autism from scratch, particularly as there is so much misinformation online, and so many conflicting statements from respected professionals in the autism field. But bit by bit, I began to piece things together, and about a year into my wait, I had convinced myself I must be autistic.
Over the next few months, however, doubt began to set in. I began to think that I wasn’t autistic after all, that I was fooling myself, and that I just needed to “man up.”
On the day I went for the final part of my assessment, I was sure I would be told I was not autistic. Instead, I was told I had a diagnosis of Autism Spectrum Disorder (formerly Asperger Syndrome), and given a document of several pages explaining exactly how my diagnosis had been arrived at.
formal diagnosis
“There is no one test for autism, of course, because that doesn’t exist.” ~Dr Sarah Lister Brook, Clinical Director, National Autistic Society.
A formal diagnosis of autism is a conclusion that is reached by a qualified clinician, based on evidence generated during an assessment process. The sources of evidence include observed behaviour, history reported by the assessee and by their family, and developmental history. There are also several specific diagnostic tools and activities that may be deployed.
The assessing clinician considers the evidence in light of the current diagnostic criteria (usually from the Diagnostic and Statistical Manual of Mental Disorders (DSM) or the International Classification of Diseases (ICD).
The clinician uses professional judgement to determine whether the evidence matches the diagnostic criteria. The diagnosis, then, is not the result of a biological test, such as a blood test or brain scan. It is a professional judgement based on observed and reported behaviour and developmental history.
autism through a medical lens
Some confusion can arise regarding the formal diagnosis of autism because it is diagnosed in relation to medical criteria. Those criteria are found in manuals for mental disorders, and the classification of diseases. This is despite health organisations and autism advocacy groups, such as the NHS and NAS, clearly stating that autism is not an illness. There are two points to consider here:
Firstly, yes, the ICD stands for the International Classification of Diseases, but it contains far more than diseases. It includes injuries, developmental conditions, mental and behavioural disorders, factors influencing health, and many other health-related classifications.
Similarly, yes, the DSM is a manual of mental disorders, but many researchers and autistic people debate whether autism should be conceptualised primarily as a disorder, a disability, a neurodevelopmental difference, or some combination of these. The DSM is a placeholder for autism diagnoses, but that does not mean that autism must be considered a disorder; understanding of autism is evolving.
Secondly, formal diagnosis is indeed a medical process, but the diagnosis is a medical classification of a person’s characteristics, not the characteristics themselves. The characteristics exist independently of the medical classification.
Benefits of a Formal Diagnosis
There are several benefits to receiving a formal diagnosis of autism, some of which are context-dependent, and some of which are objectively practical. Some of these benefits are used as arguments against self-diagnosis.
Professional expertise
A formal assessment is conducted by clinicians trained to recognise autism and, importantly, to distinguish it from other conditions with similar features. This reduces, though does not eliminate, the risk of misdiagnosis. The implication here is that anyone self-diagnosing is at a greater risk of misdiagnosis.
A comprehensive evaluation
Formal diagnosis considers multiple sources of evidence, including developmental history, current presentation, and, where appropriate, information from family members or standardised assessment tools.
Access to benefits and legal protections
In many countries, a formal diagnosis is required to access workplace adjustments, educational support, disability benefits, and specialist services. This is an important practical benefit.
Clinical recognition
A formal diagnosis is a reference point for other clinicians. In theory, this helps them understand an individual’s needs and enables them to take autism into account when providing care.
It is important to remember, however, that health outcomes for autistic people in clinical settings are statistically worse than for non-autistic people. A lack of knowledge and training about autism in clinical settings continues to be a problem, and the case of Oliver McGowan has led to the Oliver McGowan Mandatory Training on Learning Disability and Autism in all health and social care settings that are registered with the Care Quality Commission (CQC) in the UK.
Reassurance and validation
It is common for people diagnosed in adulthood to have suspected they are autistic for some time. Frequently, people in this situation are left confused by the amount of information available online, the opinions of people they know, and their own personal doubts. For many people, receiving a diagnosis from an independent clinician provides confidence that their lifelong experiences have been understood and recognised. Many autistic people, after receiving a formal diagnosis, report a sense of relief at having answers to the questions they have been asking themselves about their life experience.
formal diagnosis and the reality of autism
A formal diagnosis of any condition is seen by many people as the only valid diagnosis. It would be unwise to claim that a self-diagnosis of, for example, bacterial meningitis, is acceptable or valid. Medical tests such as lumbar punctures and blood cultures are carried out by professionals to determine the presence of bacterial meningitis. However, pointing this out is not a valid argument against self-diagnosis of autism.
The diagnosis of autism is different. Unlike many medical conditions that can be confirmed by objective biological tests, autism diagnosis depends on behavioural evidence interpreted through professional judgement. The clinician is deciding whether a person’s lifelong pattern of behaviour and development satisfies a set of diagnostic criteria that humans have devised. Those criteria are informed by research and clinical consensus, but they are still conventions that evolve over time. The diagnostic category itself is a human model of the real phenomenon of autism, not the phenomenon itself.
Autism exists separately from the changeable diagnostic models. There are current diagnostic criteria which form the framework clinicians use to identify autism within an individual. There is formal diagnosis, which is an authorised clinician’s judgement that the person meets those criteria. And then there is the underlying reality of whether a person genuinely has the neurodivergent characteristics we call autism.
Autism did not begin when clinicians first described it, nor does it change every time the DSM or ICD is revised. What changes is our model of autism; our attempt to describe and classify an underlying neurodivergent reality.
Self-Diagnosis
Self-diagnosis of autism is the process by which an individual concludes that they are autistic without receiving a formal diagnosis from a qualified clinician. The person considers their own life experiences, behaviours, and developmental history and evaluates this in light of their understanding of autism.
People who self-diagnose typically use one or more of the following approaches:
- Reading books and scientific literature about autism. These might be textbooks, or less formal literature, for example, autobiographies by autistic people.
- Comparing their experiences with the diagnostic criteria in the DSM or ICD.
- Completing recognised autism screening questionnaires, such as the Autism Spectrum Quotient (AQ), or the Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R).
- Learning from the experiences of autistic people through blogs, videos, podcasts, or support communities.
- Reflecting on childhood experiences, sensory differences, communication style, and patterns of behaviour throughout their lives.
- Considering whether autism provides the most coherent explanation for their lifelong experiences.
It’s important to remember that there is no widely agreed method of self-diagnosis. By definition, self-diagnosis is informal. The depth and rigour of self-diagnosis varies considerably between individuals. Some people reach their conclusion after extensive research and reflection over many months or years, while others may reach a conclusion more quickly based on limited information.
Self-diagnosis is an informal, self-directed process; it doesn’t involve an independent clinical assessment, or confer legal or medical recognition.
The Differences
Formal diagnosis and careful self-diagnosis often draw on many of the same sources of evidence—developmental history, lifelong behavioural patterns, sensory experiences, and comparison with diagnostic criteria. The principal differences lie in who evaluates the evidence, the level of professional expertise brought to that evaluation, whether an independent, objective perspective is involved rather than a purely personal, subjective approach, and whether the conclusion carries any formal medical or legal authority.
Criticisms of Self-diagnosis
There are two broad categories of criticisms of, or objections to, self-diagnosis of autism.
Firstly, there is the question of accuracy. The objection is that a self-diagnosis is less likely to deliver a result which correctly determines if the person is autistic. Generally, this objection is grounded in the absence of formal training by the person self-diagnosing, and in a lack of objectivity.
Secondly, there are practical concerns: For example, should self-diagnosis be accepted by society to the extent that it enables all the same benefits and legal protections as a formal diagnosis? Even if it is accepted that many self-diagnoses accurately indicate the presence of autism, it could be argued that this does not justify a blanket acceptance of self-diagnosis.
Specific criticisms of and objections to self-diagnosis, and responses to them:
People who self-diagnose lack the expertise to distinguish autism from other conditions (differential diagnosis).
This is a strong and valid criticism, with caveats. While in theory there may be some people with formal training in relevant fields who choose to self-diagnose, this is usually not the case, and a lack of objectivity would still be an issue. However, we should consider whether this objection to self-diagnosis is relevant only because of an assumption that self-diagnosis is trying to perform the same function as formal diagnosis.
People who choose to self-diagnose have reasons for asking themselves that question. Something in their life experience has caused them to consider their perceived differences from people around them, and autism has become part of that consideration. For many adults who later receive a formal diagnosis, the process begins with their own suspicion that they might be autistic.
Many people who receive a formal diagnosis in later life have previously been misdiagnosed with other conditions, frequently depression, anxiety, bipolar disorder, or borderline personality disorder.
Formal diagnosis of autism is subject to potential misdiagnosis (as is any formal diagnosis), and inappropriate refusal of a referral for autism assessment due to a misdiagnosis does happen. This criticism of self-diagnosis, then, is one of degree, rather than an outright dismissal.
Confirmation bias and motivated reasoning can lead people to interpret their evidence and personal reflections in favour of autism, while ignoring or minimising contradictory evidence.
This is again a strong and valid objection. However, even in formal diagnosis, cognitive biases such as these can be present in an assessing clinician. This can lead to both false positives and false negatives. The same biases can affect the decision to refer or not to refer a person for an autism assessment; not just the actual clinical assessment and diagnosis.
There is an assumption in some criticism of self-diagnosis that once a person suspects they are autistic, they will automatically assume that must be the case, and seek out evidence to confirm it. However, many people embarking on a process of self-diagnosis will be aware of the prejudice and discrimination that autistic people experience, and may well be hoping the answer to their question is no. Often, then, people will be looking for evidence to suggest they are not autistic.
Social media has oversimplified or romanticised autism, leading some people to identify with inaccurate portrayals.
Misinformation and disinformation on social media are an increasing problem. But this is really a criticism of social media rather than a criticism of the process of self-diagnosis.
However, it’s difficult to disagree with the statement that autism is often oversimplified on social media. The scope and complexity of the field of autism is astonishing, and underappreciated by many. The fact that autism is complex is not a valid criticism of self-diagnosis, but it does suggest that self-diagnosis needs to factor in the complexity.
The claim that autism has been romanticised by social media is perhaps unfair. Many autistic advocates online discuss the positive traits that are part of autism. This is often a response to the harmful stereotypes about autistic people though, and should be seen as adding context rather than romanticising.
Some people may unintentionally spread misinformation by speaking authoritatively about autism despite not actually being autistic.
This objection, again, is not really a criticism of self-diagnosis, but a concern over how people use social media. People who have a formal diagnosis of autism do not become autism experts just because they have a formal diagnosis, and so could be equally likely to spread false information.
Some people may, consciously or unconsciously, seek an autism label for identity, or community, rather than because autism is the best explanation.
It is common for people who begin to question whether they might be autistic to identify with autistic people. For many, this is part of what has prompted the consideration in the first place. Feelings of social isolation and alienation are common in autistic people, and so anyone who suspects they are autistic and who feels this isolation and alienation may gravitate toward the autistic community. This seeking out of a community or identity should be seen as a natural part of the process of determining whether autism is the best explanation for one’s life experiences, rather than an objection to self-diagnosis.
Incorrect self-diagnosis may delay or permanently block identification and treatment of another condition.
This is a valid concern, but as already stated, misdiagnoses happen in professional clinical settings, too.
Wide social acceptance of self-diagnosis may undermine confidence in the diagnostic process, devalue formal assessment, or enable inappropriate access to disability benefits and other support mechanisms.
This objection misrepresents what self-diagnosis of autism actually is. It suggests that social acceptance of self-diagnosis will create a legal equivalence of formal diagnosis and self-diagnosis. It assumes self-diagnosis and formal diagnosis are trying to accomplish the same thing. However, this is not what self-diagnosis is about. We will return to this shortly.
Benefits of Self-Diagnosis
Although self-diagnosis doesn’t provide formal medical or legal recognition, it can offer some benefits.
- The only alternative. Many people who begin to suspect they are autistic cannot access a formal diagnosis. This may be due to financial costs, or family or social pressures, for example. A process of self-diagnosis gives the person the opportunity to get answers.
- Self-understanding. For many people, recognising themselves as autistic provides a coherent explanation for lifelong experiences, behaviours, sensory differences, and social challenges that were previously confusing or misunderstood.
- Emotional validation. Self-diagnosis can help individuals reframe past experiences with greater self-compassion, reducing feelings of confusion, shame, or personal failure.
- Access to autistic knowledge and community. Identifying as autistic may encourage people to learn more about autism, adopt helpful coping strategies, and connect with autistic communities whose experiences resonate with their own.
- Practical self-accommodation. Even without a formal diagnosis, people may make beneficial changes to their daily lives, such as reducing sensory overload, adapting communication styles, or adopting more suitable routines.
- Accessibility. Self-diagnosis allows people to explore the possibility that they are autistic when formal assessment is inaccessible because of long waiting lists, financial barriers, geographical limitations, or restrictive eligibility criteria.
- Preparation for formal assessment. For some individuals, self-diagnosis is not an alternative to formal diagnosis but a step toward it, helping them organise their experiences and decide whether to seek a professional assessment.
The Point
The main criticisms suggest that self-diagnosis of autism is not valid because it is not a formal diagnosis. This is, however, a category error. It misrepresents self-diagnosis by comparing it with formal diagnosis, when in fact, the two processes are attempts to answer two very different questions.
Formal diagnosis asks the question, Does this individual meet the operational diagnostic criteria adopted by this healthcare system at this time?
Self-diagnosis asks the question, Is autism the best explanation for my lifelong experiences, difficulties, strengths, weaknesses, differences, and way of interacting with the world?
These are fundamentally different questions.
In formal diagnosis, the clinician is constrained by manuals, thresholds, evidence requirements, local service policies, and so on. When going through a process of self-diagnosis, the person is engaging in explanatory reasoning rather than clinical classification.
A formal diagnosis is more than a clinical conclusion about autism. It’s a social institution, a statement made by an authorised professional whose opinion carries legal and medical consequences. A self-diagnosis can never be a formal diagnosis because no one can formally diagnose themselves.
A self-diagnosis cannot, therefore, be valid if validity is equated only with the rules of the institution of formal diagnosis. Nevertheless, that does not mean that a self-diagnosis must always be wrong. A self-diagnosis can correctly reach the same conclusion as a formal diagnosis, and therefore be valid as a way for the person in question to understand themselves.
Formal diagnosis and self-diagnosis are not vying for equivalence. They serve different purposes. Formal diagnosis provides medical recognition, legal authority, and access to support. Self-diagnosis seeks understanding.
Where the two reach the same conclusion, they need not be seen as competitors. One is an institutional judgement; the other is a personal explanatory conclusion. Because these are different enterprises, it is a mistake to judge one solely by the standards of the other.
That’s all for this time. Take care.
share this article:
The Autistic Writer is a labour of love, dedicated to promoting autism acceptance, understanding, and equality. If you’d like to help support this work, a small tip via Buy Me a Coffee would be greatly appreciated. Just click the button, below.
If you like this blog, I can also highly recommend the brilliant Mortgage Advisor on FIRE, which covers financial wellbeing, mental health, and autism issues, among much more.
