Pro and Cons of Self-diagnosing NDs
The Debate Over Self-Diagnosis: Understanding Invisible Learning Challenges
Welcome to this chapter, where we discuss and discover the challenges and triumphs of those living with Nonverbal Learning Disability (NLD) and other invisible learning challenges such as autism, ADHD, dyslexia, dysgraphia, and any other learning differences. A crucial topic for many in the neurodivergent community is self-diagnosis—the process of recognizing a neurodevelopmental or learning difference in oneself without a formal professional assessment.
The increasing visibility of neurodiversity online has led many adults, particularly those who were undiagnosed in childhood, to research their experiences and arrive at a self-diagnosis. This chapter explores the nuances of this process, examining its benefits, risks, and common misconceptions.
The Validity and Value of Self-Diagnosis
The process of self-diagnosis often begins out of necessity. As journalist Nancy Doyle points out in her article "Neurodiversity, Five Things Employers Need to Know About Self-Diagnosing," self-diagnosis is often a valid and necessary first step.
Why Self-Diagnosis Happens
Awareness of Daily Struggles: Individuals are highly aware of the chronic difficulties they encounter in their day-to-day lives. Doyle's research suggests little difference in reported rates of insomnia, well-being, job performance, and experiences of inclusion between those with a formal diagnosis and those who are self-diagnosed. The implication is that people are capable of accurately identifying their need for support.
Accessibility and Cost: A Formal diagnosis can be a significant barrier. In the UK, for instance, diagnostic conditions like dyslexia, dyspraxia, dysgraphia, or dyscalculia are often unavailable through the National Health Service (NHS) and are not identified during school. For conditions like ADHD and autism, waiting lists can stretch into years. This makes diagnosis a "privilege," accessible primarily to those who can afford private assessment or who have had the agency to advocate for it earlier in life.
A Stepping Stone to Support: As Laura Newberry notes in "Why Many People Are Diagnosing Themselves With Autism and ADHD," self-diagnosis can be a critical step in understanding oneself and advocating for what's needed to improve quality of life. It enables people to connect with others who have similar experiences, fostering belonging and acceptance—a vital aspect of well-being often denied to neurodivergent people.
Implications for Employers (and Others)
For institutions like schools or workplaces, the need for a formal diagnosis isn't always essential for providing support.
Disability Protection: Many disability laws, such as those in the UK, frame disability based on chronic difficulties in normal day-to-day activities lasting 12 months or more, rather than a specific diagnosis. If an individual is experiencing chronic difficulties related to communication, memory, or learning, it is often better to assume a need for support and act protectively.
Trusting the Individual: Employers—and by extension, friends, family, and educators—can often trust an individual to explain their difficulties and work with them based on their current context, even if the label they use for their condition isn't 100% accurate.
The Importance of Formal Diagnosis and Associated Risks
While self-diagnosis offers immediate benefits, there remains a huge value in seeking formal diagnosis when possible, as well as specific risks to be aware of.
The Value of Professional Assessment
Validation and Confidence: Formal diagnosis is often cathartic—it helps people overcome self-doubt, increasing confidence and ambition.
Accuracy and Exclusion of Other Conditions: A professional assessment is required to exclude other health conditions that can mimic learning differences, such as thyroid dysfunction, brain injury, chronic health issues, or mental health distress and trauma. A professional job involves careful unpicking of background and specialist testing to ensure the correct diagnosis.
Avoiding Inappropriate Treatment: The wrong diagnosis can lead to inappropriate and potentially dangerous medical treatment or a lack of the correct support structure.
Risks and Misconceptions
Ralph Moeller, in "Self-Diagnosed Autism: What It Is and Is It Safe?," highlights that without a formal diagnosis, individuals may be unaware of co-occurring conditions or may be misinterpreting their symptoms, leading to a lack of appropriate support and treatment.
Additionally, self-diagnosis can contribute to harmful stereotypes and misconceptions:
Misrepresentation of the Spectrum: Without access to accurate information, individuals may misrepresent the full spectrum of a condition like autism.
Perpetuating Stereotypes: Self-diagnosis can unintentionally perpetuate stereotypes, such as the idea that all autistic individuals are savants or lack empathy. These stereotypes are damaging because they fail to represent the diverse experiences of those on the spectrum and can contribute to discrimination and stigmatization.
It is important for those who self-diagnose to continuously educate themselves about the full characteristics of their potential condition and to seek input from formally diagnosed individuals when possible, working toward greater understanding and acceptance of neurodiversity.
Personal Experience and Accommodations
The journey to a formal diagnosis can significantly impact an individual's life, especially in academic settings.
For one individual, high school was manageable thanks to tutors, but the transition to college—specifically a higher level of education—was a struggle until a formal assessment was sought. That assessment confirmed a learning difference, specifically Nonverbal Learning Disability (NLD). The diagnosis provided greater accuracy than self-diagnosis might have, clarifying the specific nature of the challenge and opening the door to effective accommodations.
Examples of valuable accommodations received in college included:
Audio Textbooks: Access to audio versions of textbooks and programs that could read aloud, often with the ability to make notes and highlights digitally.
Lecture Recording: The ability to record lectures while simultaneously taking notes, often integrating PowerPoint slides into the same document.
Testing Adjustments: Extra time on tests and the option to take exams alone or with fewer students, which reduces sensory or social pressure.
Emotional Support: The ability to have an emotional support animal present during testing for relaxation and comfort.
Formula Aids (for mathematical tests): Using a calculator and a small "cheat sheet" of formulas to help with symbol recall, allowing focus on the application and purpose of the formula rather than rote memorization.
Ultimately, the debate over self-diagnosis highlights a crucial point: whether formal or self-determined, the acknowledgment of a learning challenge is the necessary first step to finding the support needed for a better quality of life.
Do you have a personal experience with self-diagnosis or formal diagnosis you’d be willing to share, or are there any specific accommodations you found most helpful?
Links for articles:
https://bit.ly/3TiLyF6
https://bit.ly/3TgdhX0
https://bit.ly/3uVGD3D
