Self-Diagnosed Autism: A Valid Diagnosis?

You’ve researched and pored over every reputable autism resource to check symptoms and characteristics of the neurodevelopmental condition. So many things finally make sense, including a spectrum of social communication challenges traceable from your early childhood. Obtaining a formal diagnosis may seem like the next step but, for many autistic adults, it may feel like self-diagnosis suffices when the obstacles of later life diagnosis are considered…

Before children are diagnosed with autism spectrum disorder, their parents are often watching and noting every autistic behavior and characteristic. Researching autistic traits online, many such parents start a journey that may eventually lead to the spectrum via self-diagnosis. 

Self-diagnosing autism is controversial; some (with a formal diagnosis) in the autism community feel it’s a slippery slope to misdiagnosis, dilution of resources, and silencing of the “true” autistic voice. Angry, online community members do not hesitate to harshly tell the self-diagnosed to “Shut up,” so that the voices of the formally diagnosed can be heard. 

This frustration is probably found on just how long it’s taken society to actually hear the voices of those on the spectrum about autism. The medical community, educators, and even parents sometimes informed theories about autism without input from the autism community. To some autistic individuals it feels like their voice is being silenced or spoken over yet again; this time by those who decided on their own steam that they are on the spectrum.

But why would an adult need a formal diagnosis when they comply with the list of core autism symptoms, when they feel like they have a home in the autism community, and when they finally find peace knowing nothing is wrong with them, they are just neurodivergent. There are actually many valid reasons to seek a medical diagnosis for autism spectrum disorder, but there may also be a case for self diagnosis; especially for those who simply cannot afford a formal medical diagnosis, or find an appropriately trained doctor willing to diagnose adults who suspect they may be on the spectrum.

A challenging diagnosis

Mental health professionals or pediatric neurologists are often the ones diagnosing autism spectrum disorder in children; they use specific criteria, like that found in The Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013). The DSM–5 criteria for autism is concentrated in two core areas:

• Persistent deficits in social interactions and communication
• Restricted and/or repetitive behaviors (and sensory interests)

These impairments must be clinically significant and must be present from early on—although it may manifest later due to masking and other coping strategies, especially in so-called “high-functioning” individuals. 

This requirement, that symptoms need to be present in the early developmental phase, may be problematic when diagnosing adults. Recalling early memories may be difficult for adults and their aging parents. But, as most research, literature and diagnostic criteria is concerned with autism as it presents and manifests in children, adults will need to consider their early days to prove whether symptoms and challenges related to autism were indeed present.

Even with a crystal clear memory of childhood, adults seeking a diagnosis may struggle to find a doctor with the training and knowledge to diagnose autism spectrum disorder outside the pediatric population. There are many pediatric specialists (like child psychiatrists) who are highly skilled and experienced in diagnosing autism spectrum disorder ; unfortunately fewer specialists seem truly equipped to diagnose and treat autism in adults.

Many psychologists and psychiatrists have training in developmental disorders, but as they lack experience dealing with autistic adults they may not feel comfortable diagnosing and treating the condition. Add to that the fact that there is no widely accepted (or specific) diagnostic criteria for diagnosing autism in adults and it’s easy to see how it may be difficult to obtain a diagnosis.

Of course there are excellent services available, at a price. A full battery of tests to determine if an adult is on the spectrum is possible, especially in big cities with the resources to offer specialized services. This may not be covered by health insurance and waiting lists could mean waiting in excess of a year for an appointment..

These are just some of the practical realities that may be challenging to overcome when seeking a formal autism diagnosis. The emotional toll may be equally taxing. From the neurodivergent perspective the reality of phone calls, appointments, meeting and conversing with various healthcare practitioners may be daunting. Parents with kids on the spectrum often tell us about the hell of getting their child diagnosed. Such parents often have the broad autism phenotype (BAP) possessing autistic traits that may mean the social interaction aspect of health appointments may be challenging.

I think I know more than my doctor…

Few things are as maddening as describing certain characteristics and assuming everyone on the spectrum possesses them to a degree. While everyone is different, it does seem like a shared love of research is commonly found in adults seeking diagnosis or those who self-diagnose. 

Long before consulting with a doctor or psychologist many adults, who suspect they may be on the spectrum, have acquired substantial knowledge of autism spectrum disorder. Meeting with a practitioner unaware of the intricacies of autism presentation, for example masking (particularly in females) and camouflaging for social acceptance, patients may be disillusioned if their knowledge exceeds that of a mental health professional.

In an ideal world an adult—for instance a parent, who after going through diagnosis with their child, suspects being on the spectrum themselves—would be able to book an appointment in a way that makes them comfortable, they’d be assessed by someone with specialist knowledge, in a location that accommodates their sensory needs. Sounds like wishful thinking? Probably one of the reasons self-diagnosis feels like a better and safer option for many.

This is the grim side of getting diagnosed as an adult; there are, of course, those in the healthcare profession who go out of their way to learn about adult autism and to apply such knowledge to enable better diagnostic practices and intervention techniques. Interestingly it seems many of these mental health professionals are the ones with personal experience of autism.

A study examining the knowledge and attitude of psychiatrists concerning autism (Crane et al., 2019) showed almost half of respondents reported some personal experience of autism, either through parenting an autistic child, being on the spectrum themselves, or relationships with relatives, friends, and colleagues. Findings from the study indicated that psychiatrists’ knowledge of autism was high—particularly for those medical professionals with a personal connection to autism.

This is not to say adults seeking a diagnosis should only seek out doctors with a personal connection to autism, but this, in addition to specialized training, experience, and empathy could facilitate formal adult diagnosis. Because even armed with research and hours of studying symptoms, self-diagnosing may still be incorrect and sometimes even dangerous.

Is self-diagnosing dangerous?

Knowing yourself best may be a sound argument for self-diagnosis, but self-knowledge may not be enough to master the intricacies of diagnosing complicated conditions like neurodevelopmental and mental disorders. Especially when considering how autism spectrum disorder may co occur alongside complicated disorders like schizophrenia and bipolar disorder. 

Even if autism was self-diagnosed accurately, a healthcare practitioner may view all symptoms objectively and holistically, sometimes diagnosing comorbid conditions like anxiety and depression alongside autism.  Treatment or intervention for mental health issues need specialist care; when self-diagnosing autism there is a risk of missing co-occurring conditions, or misdiagnosing as one condition masks or overlaps with another.

Self-diagnosing sometimes leads to self-treatment; without a formal medical diagnosis obtaining appropriate medication may be difficult. While adopting a healthy lifestyle and obtaining appropriate support may improve the lives of autistic people; many on the spectrum also need prescription medication and the services of therapists requiring a referral from the doctor who diagnosed autism and any comorbid conditions.

Different is not a diagnosis

Advocates raising awareness and acceptance of neurodivergence did not foresee how some would want in on the spectrum just to stand out; the autistic community is often perplexed and irked by those who self-diagnose autism because of seemingly superficial traits. Their irritation is obvious, it stems from having to point out the obvious repeatedly; slight social awkwardness and intense interests does not equate to being autistic. Treating the condition with glib fascination takes away from the struggle and pride of those who feel their identity and neurodivergence are interwoven.

The middle ground

The difficulty of obtaining a formal diagnosis of autism in adulthood means many are going to self-diagnose, and in some cases self-diagnosis will be accurate. But the case against self-diagnosis is strong, leading to many asking if there is a middle ground. Perhaps the groundwork of self-diagnosis could be presented to an open-minded doctor. Many adults merely seek confirmation, for them a lifetime of living with a differently wired brain leaves little doubt of being autistic.

Some adults seek such confirmation from a pediatrician, especially when it is the same specialist diagnosing their child. For these adults confirmation could mean appropriate treatment becomes available and comorbid mood or anxiety disorders may be identified and treated. 

Seeking out healthcare practitioners with experience and specialist knowledge of the presentation of autism in adults is the first step. While each individual on the spectrum is different, certain characteristics are commonly found in adults on the spectrum. If autism was not diagnosed in childhood it often indicates the adult may possess normal or high intellectual capabilities and the ability to mask symptoms for social acceptance. In certain situations social communication and sensory processing differences may however be obvious:

• Even when masking social interactions may be challenging. Eye contact for example may not feel natural but some adults on the spectrum force themselves to “look someone in the eye” causing strain and discomfort. Non-verbal cues, small talk and banter may be challenging for adults on the spectrum who prefer literal language and direct communication
• In written communication adults on the spectrum may not see the need for niceties, preferring to get to the point of the communication
• Many adults on the spectrum feel safe when routines and structures are firmly in place. Unpredictable events may induce anxiety and unexpected changes may lead to feeling completely out of control
• Due to sensory processing differences, adults on the spectrum may prefer a very specific environment, being able to control sensory input helps self-regulation. This is the reason many adults feel safe at home where they are in control
• Special interests may be one of the greatest sources of pleasure for the autistic adult, some manage to launch a successful career based on such interests

Formally or self-diagnosed, at last

Research (Scattoni et al., 2021) reveals the challenging nature—of the real-world experience—of adult autism diagnosis. But studies also tell us about the enormous emotional impact, of finally feeling validated, brought about by a diagnosis of autism in adulthood (Huang et al., 2020). It is interesting to note that adults who have self-diagnosed autism also report feelings of understanding themselves better, of relief, and joy in finding online communities (Lewis, 2016).

Bar a few individuals perhaps seeking superficial attention, self-diagnosing autism is rarely about silencing the true autistic voice, or trying to speak for neurodivergence with little understanding of its history. Most adults resorting to self-diagnosis do so after years of struggle, never quite fitting in, and masking symptoms for social acceptance. Finally finding an identity on the spectrum may lead to voicing sentiments similar to the title of a study stating: “‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism.” (Hickey et al., 2017).

References:

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596

Crane, L., Davidson, I., Prosser, R., & Pellicano, E. (2019). Understanding psychiatrists’ knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey. BJPsych open, 5(3), e33. https://doi.org/10.1192/bjo.2019.12. 

Hickey, Aoife & Crabtree, Jason & Stott, Joshua. (2017). ‘Suddenly the first fifty years of my life made sense’: Experiences of older people with autism. Autism. 22. 136236131668091. 10.1177/1362361316680914. 

Huang, Yunhe & Arnold, Samuel & Foley, K-R & Trollor, Julian. (2020). Diagnosis of autism in adulthood: A scoping review. Autism. 24. 136236132090312. 10.1177/1362361320903128. 

Lewis L. F. (2016). Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults. Archives of psychiatric nursing, 30(5), 575–580. https://doi.org/10.1016/j.apnu.2016.03.009. 

Scattoni, M. L., Micai, M., Ciaramella, A., Salvitti, T., Fulceri, F., Fatta, L. M., Poustka, L., Diehm, R., Iskrov, G., Stefanov, R., Guillon, Q., Rogé, B., Staines, A., Sweeney, M. R., Boilson, A. M., Leósdóttir, T., Saemundsen, E., Moilanen, I., Ebeling, H., Yliherva, A., … Schendel, D. (2021). Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study. Journal of autism and developmental disorders, 51(11), 4129–4146. https://doi.org/10.1007/s10803-021-04873-5.