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Self-Diagnosed Autism: Is It a Valid Diagnosis?

December 5, 2023

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. But is self-diagnosed autism a valid diagnosis?

Self-diagnosed autism is controversial. Some in the autism community feel it’s a slippery slope to misdiagnosis, dilution of resources, and silencing of the “true” autistic voice.

There are actually many valid reasons to seek a medical diagnosis for autism spectrum disorder. Still, there may also be a case for self-diagnosis, especially for those who simply cannot afford a formal medical one.

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The Challenges of Diagnosing Autism

Mental health professionals or pediatric neurologists often diagnose autism spectrum disorder in children. They use specific criteria, like that found in The Diagnostic and Statistical Manual of Mental Disorders.

The DSM–5 criteria for autism are 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 present early — although they may manifest later due to masking and other coping strategies, especially in so-called “high-functioning” individuals.

There are many challenges in diagnosing autism in adults, including:

  • Recalling early memories and potential symptoms may be difficult for adults and their aging parents.
  • It can be difficult to find a doctor with the training and knowledge to diagnose autism spectrum disorder outside the pediatric population.
  • There are 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.
  • Although there are tests available to determine if an adult is on the spectrum, they can be expensive and with a long waiting list.

These are just some 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, phone calls, appointments, meetings, and conversing with various healthcare practitioners may be daunting. Parents with kids on the spectrum often tell us the hell of getting their child diagnosed.

Such parents often have the broad autism phenotype (BAP) and possess autistic traits, which may make the social interaction aspect of health appointments 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 a diagnosis.

Before seeing a doctor or psychologist, many adults who think they might have autism already know a lot about it. If they meet with a practitioner who doesn’t understand the details of autism, like masking and camouflaging, they might feel disappointed if they know more than the mental health professional.

In a perfect scenario, an adult, like a parent who suspects they are on the autism spectrum after their child’s diagnosis, could easily schedule a comfortable appointment. A specialist would assess them in a location that meets their sensory needs.

Does this sound like wishful thinking? This is likely why many people feel that autism self-diagnosis is a better and safer choice.

Self-Diagnosed Autism: A Valid Diagnosis?
https://www.autismparentingmagazine.com/autism-self-diagnosis/

In a 2019 study on psychiatrists’ understanding and views on autism, nearly half of the participants shared personal experiences with autism. This included parenting an autistic child, being on the spectrum themselves, or having connections with someone affected by autism.

This is not to say adults seeking a diagnosis should only seek out doctors with a personal connection to autism. However, in addition to specialized training, experience, and empathy, this could facilitate formal adult diagnosis.

Because even armed with research and hours of studying symptoms, self-diagnosing autism may still be incorrect and sometimes even dangerous.

The Risks of Self-Diagnosed Autism

Understanding yourself well can be a good reason for self-diagnosis. However, autism often comes with complex conditions such as neurodevelopmental and mental disorders, like schizophrenia and bipolar disorder. Simply knowing yourself may not be enough.

Even if autism was self-diagnosed accurately, a healthcare practitioner may view all symptoms objectively and holistically. Sometimes, they may diagnose comorbid conditions like anxiety and depression alongside autism.

Treatment or intervention for mental health issues needs 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 autism sometimes leads to self-treatment. Obtaining appropriate medication may be difficult without a formal medical diagnosis.

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.

Being Different Is Not a Diagnosis

Advocates raising awareness and acceptance of neurodivergence did not expect that some would want to be on the spectrum just to stand out. The autistic community is often annoyed by those who self-diagnose autism because of seemingly superficial traits.

Their irritation is obvious. It stems from repeatedly pointing out the obvious: just because someone is a bit socially awkward and has strong interests doesn’t mean they’re autistic.

Treating the condition with glib fascination takes away from the struggle and pride of those who feel their identity and neurodivergence are interwoven.


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Is There a Middle Ground?

The difficulty of obtaining a formal diagnosis of autism in adulthood means many will self-diagnose. 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 the same specialist is diagnosing their child. Confirmation could mean appropriate treatment becomes available for these adults, 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:

  • 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.
  • 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. 
  • Being able to control sensory input helps self-regulation, which is why 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.

The Importance of Autism Diagnosis in Adults

A 2021 research article reveals the challenging nature of adult autism diagnosis. But studies also tell us about the enormous emotional impact of finally feeling validated by a diagnosis of autism in adulthood.

A different study notes that adults who have self-diagnosed autism also report feelings of understanding themselves better, relief, and joy in finding online communities.

Except for a few individuals who might seek attention, self-diagnosing autism is usually not about suppressing the real voice of autistic individuals or trying to represent neurodivergence without understanding its history.

Many adults who self-diagnose have struggled for years, never feeling like they fit in and hiding symptoms to be socially accepted.

Discovering an identity on the autism spectrum may lead to expressing feelings similar to those described in a study titled: Suddenly the first fifty years of my life made sense’: Experiences of older people with autism.

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FAQs

Q: Is it common to self-diagnose autism?

A: Approximately one-third of individuals in the United States self-diagnose using online information, but diagnosing autism can be challenging. It is advisable to consult medical professionals to prevent misdiagnosis, as autism symptoms may resemble those of anxiety, depression, trauma, ADHD, bipolar disorder, and other conditions.

Q: Can you detect autism later in life?

A: A late diagnosis, defined as 12 years or older, is associated with increased mental health challenges. A recent study revealed that adults diagnosed with autism are nearly three times more likely than those diagnosed in childhood to report psychiatric conditions.

Q: Is there a autism self-diagnosis test?

A: Although there are some tests online, an accurate diagnosis can only be made through clinical evaluation. Autism self-diagnosis tests are only for personal use.

Q: What is autism sometimes mistaken for?

A: Some brain disorders, such as ADHD and anxiety disorders, share symptoms with autism. It’s possible for autism to be misdiagnosed as another disorder due to these overlapping symptoms.

Q: How do I confirm I have autism?

A: To obtain a precise adult autism diagnosis, it’s necessary to consult with a mental health professional. They will inquire, conduct evaluations, and observe your behavior, speech, and interactions during the assessment process.

References:

“Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992921/

Exploring the Experience of Seeking an Autism Diagnosis as an Adult
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9645668/

Understanding psychiatrists’ knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6469236/

Medication Treatment for Autism
https://www.nichd.nih.gov/health/topics/autism/conditioninfo/treatments/medication-treatment

Comorbid autism spectrum disorder and anxiety disorders: a brief review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5772195/

Realizing a diagnosis of autism spectrum disorder as an adult
https://www.researchgate.net/publication/297616098_Realizing_a_diagnosis_of_autism_spectrum_disorder_as_an_adult

Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study
https://link.springer.com/article/10.1007/s10803-021-04873-5

Diagnosis of autism in adulthood: A scoping review
https://pubmed.ncbi.nlm.nih.gov/32106698/

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