Understanding Autism Self-Diagnosis
Self-diagnosis is a valid and important step for many autistic individuals, especially those facing barriers to formal diagnosis such as cost, long waiting lists, gender bias, racial bias, or lack of providers knowledgeable about autism in adults.
While a professional diagnosis may be required for certain accommodations and services, self-diagnosis can be an empowering process of self-understanding and can help you connect with supportive communities and appropriate coping strategies.
Important Note: This guide provides educational information but is not a substitute for professional assessment. Use it as a starting point for self-exploration and understanding.
DSM-5 Criteria for Autism Spectrum Disorder
The Diagnostic and Statistical Manual of Mental Disorders (5th edition) outlines specific criteria for diagnosing Autism Spectrum Disorder. To meet the diagnostic criteria, you must fulfill requirements in all of the following areas:
Persistent difficulties in social communication and interaction across multiple contexts, as manifested by all of the following:
1. Deficits in social-emotional reciprocity
Difficulty with back-and-forth conversation, reduced sharing of interests or emotions, and challenges initiating or responding to social interactions.
Real-life examples:
- Finding it hard to know when it's your turn to speak in conversations
- Struggling to maintain small talk or chitchat
- Not knowing how to respond when someone shares emotional news
- Preferring to talk at length about specific interests rather than engaging in reciprocal conversation
2. Deficits in nonverbal communication
Challenges with integrated verbal and nonverbal communication, abnormalities in eye contact and body language, difficulties understanding and using gestures, and a lack of facial expressions and nonverbal communication.
Real-life examples:
- Difficulty maintaining "appropriate" eye contact (too little or too much)
- Being told your facial expressions don't match what you're saying
- Missing nonverbal cues like someone checking their watch to indicate they need to leave
- Using limited or exaggerated gestures compared to others
3. Deficits in developing, maintaining, and understanding relationships
Difficulties adjusting behavior to suit various social contexts, challenges in sharing imaginative play or making friends, and absence of interest in peers.
Real-life examples:
- Finding it difficult to adjust your communication style between professional and casual settings
- Struggling to make or maintain friendships despite wanting connections
- Feeling confused by unwritten social rules that others seem to understand intuitively
- Preferring to interact with people much older or younger than yourself
Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following:
1. Stereotyped or repetitive movements, use of objects, or speech
Simple motor stereotypies, lining up toys or flipping objects, echolalia (repeating words or phrases), idiosyncratic phrases.
Real-life examples:
- Rocking, hand-flapping, spinning, or other repetitive movements, especially when excited or stressed
- Arranging objects in specific patterns or orders
- Repeating phrases from movies, books, or conversations (immediately or later)
- Having specific phrases or words you use in particular situations
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns
Extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat the same food every day.
Real-life examples:
- Feeling significantly upset when plans change unexpectedly
- Needing to follow specific routines to feel comfortable
- Eating the same foods repeatedly or in a particular order
- Having difficulty when your route or schedule changes
3. Highly restricted, fixated interests that are abnormal in intensity or focus
Strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests.
Real-life examples:
- Having intense interests that occupy much of your time and thoughts
- Collecting or learning everything possible about specific topics
- Focusing on details or aspects of things that others don't notice or care about
- Getting so absorbed in interests that you lose track of time or forget other responsibilities
4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects
Apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement.
Real-life examples:
- Being overwhelmed by certain sounds, lights, textures, smells, or tastes
- Having a high pain threshold or not noticing temperature extremes
- Being drawn to specific sensory experiences like spinning objects or running water
- Needing to touch or smell objects to process them fully
Symptoms must be present in the early developmental period. However, they may not become fully manifest until social demands exceed limited capacities, or they may be masked by learned strategies in later life.
Important considerations:
- Many autistic adults, especially those who are verbal and have average or above-average intelligence, weren't diagnosed in childhood
- You may recall being "different" or having specific challenges as a child, even if no one recognized them as autism
- School reports might have mentioned being "shy," "sensitive," "in their own world," or having "social difficulties"
- For many adults, autism becomes more apparent when facing major life transitions that exceed their coping abilities
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
Real-life examples:
- Difficulty maintaining employment despite having necessary skills
- Challenges in forming or maintaining relationships
- Struggling with independent living skills in ways that impact daily functioning
- Experiencing burnout from trying to mask or compensate for autism-related challenges
These disturbances are not better explained by intellectual disability or global developmental delay.
However, autism can co-occur with many other conditions, including ADHD, anxiety disorders, depression, learning disabilities, and others.
Differential Diagnosis: Conditions That May Overlap With Autism
Many conditions share features with autism. Understanding these overlaps is important for accurate self-assessment:
ADHD (Attention-Deficit/Hyperactivity Disorder)
Shares features like social difficulties, sensory sensitivities, and executive functioning challenges. Key difference: ADHD primarily involves attention regulation and impulse control, while autism has more pronounced social communication differences and restricted interests/repetitive behaviors.
Social Anxiety Disorder
Shares social difficulties and avoidance. Key difference: Social anxiety is based on fear of judgment, while autistic social challenges stem from differences in social processing and communication style. Autistic people also show restricted interests and sensory sensitivities not explained by anxiety.
OCD (Obsessive-Compulsive Disorder)
Shares repetitive behaviors and rigid routines. Key difference: OCD rituals are driven by intrusive thoughts and fear of consequences, while autistic routines are about comfort and processing. OCD doesn't typically involve the social communication differences seen in autism.
Personality Disorders
Some, like Schizoid or Avoidant Personality Disorder, share social withdrawal features. Key difference: Personality disorders develop primarily in adolescence/adulthood and don't involve the sensory and repetitive behavior aspects of autism.
Important: Many autistic people have co-occurring conditions. It's not always a matter of either/or, but often both. For example, autistic people have higher rates of ADHD, anxiety disorders, and depression.
Understanding Trauma and Autism
Trauma and autism can interact in complex ways that are important to understand:
Trauma Response vs. Autistic Traits
Some responses to trauma can look similar to autistic traits:
- Social withdrawal and difficulties with trust (trauma) vs. inherent social communication differences (autism)
- Hypervigilance and sensory sensitivity from trauma vs. neurological sensory processing differences in autism
- Emotional regulation difficulties from trauma vs. inherent emotional processing differences in autism
Trauma From Being Autistic in a Non-Autistic World
Many autistic individuals experience trauma from:
- Bullying, rejection, and social exclusion
- Being forced to suppress natural behaviors (masking)
- Sensory overwhelm in environments that don't accommodate needs
- Harmful interventions aimed at making them appear "normal"
How Trauma Can Mask or Amplify Autistic Traits
- Trauma can lead to developing coping mechanisms that hide autistic traits
- Conversely, trauma can exacerbate sensory sensitivities and social difficulties
- Trauma responses can complicate self-recognition of autistic traits
Important perspective: Experiencing trauma doesn't invalidate an autism identification. Many autistic people have experienced trauma precisely because they are autistic in a world not designed for them. Both can be true simultaneously.
Coping Strategies and Self-Care
Whether you're self-diagnosed or formally diagnosed, these strategies can help you navigate challenges:
Sensory Regulation
- Create a sensory toolkit (noise-canceling headphones, sunglasses, fidget items)
- Identify your sensory triggers and preferences
- Design your living space to minimize sensory overload
- Schedule regular sensory breaks during demanding activities
Social Navigation
- Set boundaries around social energy expenditure
- Practice direct communication when possible ("I need to take a break")
- Connect with other autistic people who understand your experiences
- Develop scripts for common social situations that cause anxiety
Executive Functioning Support
- Use visual schedules, timers, and reminders
- Break tasks into smaller, manageable steps
- Create routines for daily activities to reduce decision fatigue
- Use body doubling (working alongside someone) for motivation
Emotional Regulation
- Learn to identify emotions in your body before they become overwhelming
- Develop a meltdown/shutdown prevention plan
- Practice grounding techniques specific to your needs
- Create a calm-down space or protocol for overwhelm
Trauma-Informed Approaches
- Practice self-compassion for past experiences
- Explore trauma-informed therapies with autism-knowledgeable providers
- Recognize when a response might be trauma-related vs. autism-related
- Build a support network that understands both trauma and autism
Moving Forward with Self-Knowledge
Self-diagnosis is often the beginning of a journey toward better self-understanding and improved quality of life. Whatever conclusions you reach about yourself, this knowledge can help you:
- Understand your needs and communicate them more effectively
- Find accommodations and strategies that work for your specific situation
- Connect with communities that share your experiences
- Make informed decisions about pursuing formal diagnosis if desired
- Advocate for yourself in educational, employment, and healthcare settings
Remember: You are the expert on your own experience. Whether you identify as autistic through self-diagnosis or professional diagnosis, your experiences are valid, and you deserve support and understanding.
Consider exploring these resources to continue your journey:
Books
Online Communities
Screening Tools
Podcasts
Educational Websites
Support Groups
Remember that self-exploration is a journey, not a destination. Be patient with yourself and celebrate each step toward better self-understanding and self-advocacy.