Understanding Autism Diagnosis: From Self-Identification to Formal Assessment

By Cat Salladin

The path toward understanding and recognizing autism in oneself is a deeply personal and nuanced process. For many adults, like myself, it begins with self-identification, a growing awareness that our experiences, behaviors, and ways of thinking align with what we’ve learned about autism. Others might then pursue a formal diagnosis, seeking a deeper understanding and validation through professional assessment. Regardless of the path, the process of identifying as autistic can be transformative, offering clarity, connection, and a sense of belonging. I know that it certainly did for me!

This article will explore the process of autism diagnosis, from the initial spark of self-recognition to the professional diagnostic process, including the story of my identification and diagnosis journey. It will also discuss some of the benefits and drawbacks of obtaining a formal diagnosis, common misdiagnoses, and why some groups, such as women and gender-diverse individuals, are more likely to be diagnosed later in life. 
 

Self-Identification: A Valid Starting Point

For many adults, including myself, the journey begins with self-identification. This process often involves noticing patterns in one’s life, researching autism, and reflecting on how the traits align with personal experiences. Self-identification is a powerful first step for people who may have spent years feeling “different” or “wrong” without knowing why. It’s common for people to come across a description of autism by chance, often through online communities, books, or blogs, and experience a deep sense of recognition. This realization can be both liberating and overwhelming.

Self-identification is particularly important because formal diagnosis is not always accessible. Many individuals face barriers such as cost, lack of knowledgeable professionals, geographic limitations, or fear of stigma. Additionally, the diagnostic process itself, although expanding in recent years, is still often focused on children and may not always capture the lived experiences of autistic adults, especially those who have learned to mask or camouflage their traits.

Many who self-identify as autistic find it empowering to understand themselves in the context of neurodiversity. Recognizing oneself as part of the autistic community can provide a sense of relief, validation, and connection. For those who choose not to pursue a formal diagnosis, self-identification can still be a meaningful way to embrace and celebrate one’s neurotype.

Personally, I began my autistic self-discovery journey in college. In my MSW program, I learned about autism in the stereotypical way; you know, the one that makes it seem like only cis, straight, white boys who like trains can be autistic. However, I still found the neurotype fascinating and began diving into more intense research about neurodivergence in general. I already knew that I’m an ADHDer, although I didn’t realize just how impacted I am by this, and fixating on neurodivergence opened a whole new world of understanding the diversity of human neurology. Unbeknownst to me, before I even knew what special interests were, I’d stumbled upon my newest special interest. 

Around the same time, I began getting numerous videos from autistic creators on my social media feeds. I found myself deeply relating to a number of queer and AFAB AuDHD creators and realized that this might be a lot more than just an interest of mine. I started picking up books and podcasts that dove deeper into autism and how it presents differently for different people. I was blown away, and I finally had the language to describe why I’d felt so different and why I’d always been searching for the answer to what was “wrong” with me. I finally knew that there WASN’T something wrong with me! I finally knew that I’m autistic! 

Self-identification was a huge, life-changing experience for me. For the first time in my life, I understood myself and why I am the way I am. However, I still had anxiety surrounding labeling myself as autistic without “proof”. So, I began the process of finding a professional who was well-versed in diagnosing autism in women. 
 

Pursuing a Formal Autism Diagnosis: The Process

For those who decide to seek a formal diagnosis, the process usually involves several steps, including finding the right professional, undergoing assessments, and participating in a diagnostic interview. It’s important to remember that having the resources to undergo a full diagnostic process is a privilege that not everyone can afford. I was grateful that my insurance company covered a lot of the costs of my assessment, but, unfortunately, this is not the case in many situations. 

 

1. Finding a Specialist

The first step in pursuing a formal diagnosis is finding a professional who is experienced in diagnosing autism in adults, particularly women and other minorities. This can be challenging, as many clinicians are trained primarily to diagnose autism in children. Adults who seek a diagnosis may need to find a specialist such who has experience with neurodivergent adults. It’s important to choose someone who understands the nuances of adult autism, especially in individuals who may have learned to mask their traits over time. 

Personally, I found someone who works specifically with women and AFAB people. They’d started their practice specifically because they’d seen the lack of resources for this population and wanted to fill in the gaps. I was also extremely lucky that they happened to take my insurance, which, like I previously said, is rare. 
 

2. The Assessment Process

Once you’ve found a clinician, the assessment process usually begins with questionnaires and surveys designed to measure autistic traits. Some of these tools may include:
 

• Autism Quotient (AQ) Test: A commonly used self-assessment that measures autistic traits across a spectrum.
   

• Social Responsiveness Scale (SRS): A tool that helps assess social communication challenges.
   

• The Ritvo Autism Asperger Diagnostic Scale (RAADS-R): Another self-report questionnaire that looks at autism traits in adults.
   

• Camouflaging Autistic Traits Quotient (CAT-Q): Likely, if your provider is well-versed in high-masking autistic populations, they will have to take this assessment to identify where you mask your autistic traits. 
   

At NeuroSpark, we share a different set of screeners and questionnaires to be completed before your clinical interview.

These tools are not diagnostic on their own, but they provide a helpful starting point for understanding how certain traits align with autism. The next step is usually a comprehensive diagnostic interview with the clinician.
 

3. The Diagnostic Interview

The diagnostic interview is a key part of the formal diagnosis process. During this interview, the clinician will ask a range of questions about your childhood, social experiences, sensory sensitivities, communication patterns, and emotional regulation. At NeuroSpark, we use the Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition (MIGDAS-2). While every interview varies depending on the clinician’s approach, some of the common areas of inquiry include:
 

• Childhood Development: Questions about early childhood behaviors, such as language development, play styles, and interactions with peers. Even though memories of childhood can be vague, the clinician may ask for details about how you played, whether you preferred solitary activities, and if you had special interests. My provider also told me ahead of time that it could be helpful for me to have my family members reflect on how I acted as a child, what my sensitivities were, and more. This was helpful as I don’t have a good memory about my childhood. 
   

• Social Interactions: Questions about current and past social experiences, such as how you engage with others, whether you find socializing tiring or confusing, and if you’ve ever struggled with reading social cues. In my assessment, they asked me how much I think about the way I present myself and how much I’m thinking about altering my face, body, and speech in social situations. This was to determine how much I mask, which is, apparently, a lot!
   

• Sensory Sensitivities: Questions about your sensory experiences, such as being easily overwhelmed by noise, bright lights, certain textures, or tastes. Sensory sensitivities are a hallmark of autism, and many people recall specific sensory challenges throughout their lives. In  my assessment, the provider also asked me about my anxiety levels and if I notice that certain environments seem to elicit worse anxiety for me, as this is a common autistic experience when we don’t yet have the language to describe it as overstimulation. 
   

• Emotional Regulation: Questions about emotional responses, such as experiencing intense emotions or having difficulty managing them. The clinician may ask if you’ve ever experienced meltdowns or shutdowns and how you respond to stress. In my assessment, I was able to describe what I had thought were “panic attacks” that I’d had from the age of 11. It was eye-opening to learn that what I’d been experiencing for most of my life were autistic meltdowns rather than panic attacks!
   

• Special Interests: Questions about deep or focused interests. The clinician may ask if you’ve ever had hobbies or interests that consumed much of your time or attention. 
   

The interview is typically in-depth and can take several hours, as the clinician aims to gather a comprehensive picture of your experiences. Some clinicians also ask for input from family members or loved ones to provide insight into childhood behaviors (at NeuroSpark, collateral information is completely optional).
 

Benefits of Obtaining a Formal Diagnosis

For many, receiving a formal diagnosis is a life-changing experience. It can bring a sense of clarity, validation, and relief after years of confusion or misdiagnosis. For me, it erased any doubts or self-invalidation that I was experiencing about being autistic. Even though I knew that I was autistic before receiving the diagnosis, the formal diagnosis kind of “sealed the deal”, so to speak.
 

1. Validation and Self-Acceptance

A formal diagnosis can provide a sense of validation that self-identification may not fully offer. Knowing that your experiences have a name can be deeply affirming, especially after years of feeling out of place. Many individuals report feeling a sense of relief upon receiving their diagnosis, as it allows them to reframe their life experiences in the context of neurodivergence rather than feeling flawed or “broken.”
 

2. Access to Support and Resources

A formal diagnosis can open the door to various forms of support, including accommodations in the workplace, educational settings, or other environments. For example, individuals may be able to request adjustments to their work environment, such as noise reduction measures, flexible hours, or sensory accommodations. A diagnosis may also allow access to therapy, coaching, or community services designed for autistic individuals.
 

3. Community and Connection

Being part of the autistic community can be incredibly empowering. A formal diagnosis can provide a sense of belonging and connection to others who share similar experiences. Many autistic adults find comfort in connecting with online or in-person communities where they can share their experiences, offer support, and celebrate their unique strengths.
 

4. Understanding Yourself and Others

A diagnosis can also enhance self-understanding, allowing individuals to recognize patterns in their behavior and experiences that they may not have fully understood before. This can lead to increased self-compassion and help individuals navigate relationships with greater ease, as they can communicate their needs and challenges more effectively.
 

Drawbacks and Challenges of a Formal Diagnosis

While a formal diagnosis has many benefits, there are also potential drawbacks that some people encounter when seeking or receiving a diagnosis.
 

1. Cost and Accessibility

One of the primary barriers to obtaining a formal diagnosis is the cost. In most places, the diagnostic process is not covered by insurance or is prohibitively expensive. Additionally, access to qualified clinicians who specialize in adult autism can be limited, particularly in rural or underserved areas. This is why it is important to recognize that self-identification, especially after tons of research and self reflection, is totally valid and should be taken as truth. 
 

2. Stigma and Misunderstanding

Despite growing awareness, there is still significant stigma and misunderstanding surrounding autism. Some individuals may fear being labeled or judged negatively by others if they receive a diagnosis. In certain professional or social contexts, disclosing an autism diagnosis may lead to discrimination or exclusion. Personally, I experienced this first-hand even as a mental health professional. I was either not believed as being autistic and thus denied accommodations, or my accommodations were not seen as necessary or valid. This led to intense burnout and isolation within the role that eventually led me to have to quit. 
 

3. Focus on Deficits

The diagnostic process itself can sometimes feel deficit-focused, as it often emphasizes challenges and areas of difficulty. While this is necessary to meet the diagnostic criteria laid out in the DSM-V, which is deficit-focused, some individuals may feel that the process overlooks their strengths or the more positive aspects of their neurodivergence. This is where coaching can come in handy for autistic individuals after they receive their diagnoses. Coaching can help reframe certain aspects of the diagnostic criteria, help find accommodations, and harness strengths. 
 

Common Misdiagnoses

Many autistic adults, especially those who are late-diagnosed, receive one or more misdiagnoses before discovering they are autistic.

• Social Anxiety Disorder: The social challenges and discomfort that many autistic individuals experience can be mistaken for social anxiety. While some autistic people also experience anxiety, the root cause may be related to difficulties with sensory processing or social communication rather than a fear of social situations.
   

• Borderline Personality Disorder (BPD): Emotional dysregulation and intense emotional responses are sometimes misdiagnosed as BPD. Autistic individuals may experience meltdowns or shutdowns, which can be misunderstood as mood swings or impulsivity.
   

• Depression: Autistic individuals may be misdiagnosed with depression if their challenges with social interaction or communication are interpreted as withdrawal or sadness.
   

• ADHD: ADHD and autism share many overlapping traits, including difficulties with executive function, focus, and sensory sensitivities. It’s not uncommon for someone with autism to be initially diagnosed with ADHD, especially if their autistic traits are not immediately recognized.
   

It is important to note that while these are common misdiagnoses, they can also occur concurrently with autism. Many autistic people are also ADHDers, frequently referred to as AuDHD, experience depression, or have anxiety.
 

Late Diagnosis: Who is More Likely to be Diagnosed Later in Life?

Certain groups are more likely to be diagnosed with autism later in life, often due to systemic biases in how autism is understood and diagnosed.
 

1. Women and Gender-Diverse Individuals

Autism has historically been diagnosed based on traits that are more commonly seen in boys, leading to the underdiagnosis of women and gender-diverse individuals. Women are often socialized to mask their autistic traits, making them harder to detect. As a result, many women only discover they are autistic in adulthood, often after years of self-doubt or misdiagnoses.
 

2. People of Color

Racial and ethnic minorities are also less likely to be diagnosed with autism, due to biases in healthcare and diagnostic criteria. People of color may face additional barriers to receiving an accurate diagnosis, including limited access to specialists and cultural differences in how autism is perceived.
 

3. Those Who Mask

Masking refers to the conscious or unconscious suppression of autistic traits in order to fit in with neurotypical expectations. People who mask effectively may go undiagnosed for much of their lives, as their efforts to blend in can obscure their autistic traits. However, masking is often exhausting and can lead to burnout, making it more likely that individuals will seek a diagnosis later in life.
 

Conclusion

The process of autism diagnosis is multifaceted and deeply personal. Whether through self-identification or formal assessment, recognizing oneself as autistic can provide a sense of clarity, validation, and connection. While pursuing a formal adult autism diagnosis offers many benefits, it is not without challenges. Ultimately, the decision to seek a diagnosis is a personal one, and for many, the knowledge and understanding gained from identifying as autistic—whether formally or informally—can lead to a more fulfilling and authentic life.