Autism spectrum disorder (ASD) is a complex developmental condition that affects how a person communicates with and relates to other people, and how they experience the world around them. There are varying degrees of autism ranging from mild to severe, which is why it is called a “spectrum” disorder. But an important question many people have is: do people with autism actually know or realize they have it?
The Self-Awareness of Autism in Children
Young children with autism, especially those under age 5, generally do not have an understanding or awareness that they have autism or that they think, behave, communicate or experience the world differently from others. There are several reasons for this:
- Limited perspective-taking – Children with autism tend to have difficulty seeing outside their own perspective and understanding how others see things.
- Immature cognitive development – The parts of the brain involved in self-awareness and meta-cognition typically develop gradually and may be delayed in autism.
- Lack of exposure – Without adequate exposure to peers and social settings, a child may have no point of comparison to recognize their differences.
- Focus on interests – Children with autism tend to be very focused on their specific interests, with limited awareness of their wider social/communication challenges.
Very young children with autism are often oblivious to their diagnosis. However, some differences they may notice could include sensitivities to certain sounds/textures, preferences for consistency, or difficulty communicating their wants and needs.
Developing Self-Awareness in School-Age Children
As children with autism reach elementary school age, their self-awareness and perspective-taking abilities gradually start to develop. There are several factors that influence their growing understanding of having autism:
- Increasing social demands – School places greater demands on social interaction and communication, which creates more noticeable challenges.
- Peer interactions – Greater exposure to peers may lead a child to notice more social difficulties in comparison.
- Academic rigor – Academic and classroom skills like organization, focus, and working independently can be areas of difficulty.
- Interventions – Participation in social skills groups or therapies can aid in building perspective-taking.
- Explanations from adults – Parents and teachers explaining autism and describing the child’s challenges can foster understanding.
During this stage, children may recognize their specific struggles even if they do not understand autism as a whole. They may also notice ways they think or behave differently, like needing more down time, not understanding sarcasm, or taking things very literally.
Autism Self-Awareness in Pre-Teens and Teenagers
The pre-teen and teenage years represent a major leap forward in perspective-taking and self-awareness for children with autism in most cases. A number of key factors contribute to this development during this stage:
- Puberty – Hormonal changes during puberty further spur development of self-awareness and meta-cognition.
- Abstract thinking – The ability to think more abstractly allows teens to better conceptualize having a complex neurological condition.
- Social challenges – Social rules and subtle peer dynamics become increasingly complex at this age and can lead to more difficulties or bullying.
- Desire to fit in – Many teens become more aware of feeling or appearing “different” from their peers which can motivate them to mask symptoms.
- Exploring identity – Teens start examining their identity more closely, including what makes them unique as an individual.
During this stage, teens generally have a much clearer perspective on their challenges with relationships, communication, sensory issues, anxiety, and other aspects of autism. They are likely to have a solid grasp that they have a neurological difference, even if they struggle accepting it.
Autism Self-Understanding in Adulthood
Self-awareness of autism continues to evolve during adulthood, as individuals gain life experience and their brains fully mature. Some key factors influence autism self-understanding at this stage:
- Post-secondary education – Pursuing higher education provides perspective on how autism impacts learning and independent living.
- Employment challenges – Entering the workforce often reveals difficulties with communication, social cues, sensory issues, organization, and other executive functioning demands.
- Independent living – Managing basic independent household and community living requires pragmatic life skills that can be challenging.
- Dating and relationships – Developing intimate relationships involves complex interpersonal skills and emotional awareness that can be difficult.
- Aging parents – Loss of parents’ support and advocacy requires assuming fuller responsibility for managing one’s challenges.
The cumulative effect of navigating adulthood leads to an increasingly nuanced, mature understanding of the pervasive impact autism has across all aspects of life. Acceptance of being autistic and developing effective coping strategies often comes with age and experience. However, residual gaps in self-awareness around social reasoning, nonverbal communication, and emotional regulation may persist.
Severity Levels and Self-Awareness
The degree of autism self-awareness also depends significantly on where an individual lies on the autism spectrum in terms of their level of functioning and support needs:
| Severity Level | Degree of Self-Awareness |
|---|---|
| Level 1 – Requiring Support | Moderate to high self-awareness, can comprehend and explain challenges. |
| Level 2 – Requiring Substantial Support | Variable self-awareness, understands differences but limited meta-cognition. |
| Level 3 – Requiring Very Substantial Support | Minimal to no self-awareness due to cognitive and communication impairments. |
Individuals on the milder end of the spectrum, such as those with Asperger’s Syndrome or Level 1 Autism, tend to be more cognitively and verbally capable. This allows them to develop greater insight into their autism-related challenges over time. Those requiring very substantial support are more severely impaired in terms of IQ, language, and cognitive flexibility. As a result, achieving a meaningful degree of self-understanding of their autism diagnosis is much less likely.
Masking and Compensation Can Obscure Self-Awareness
Some autistic individuals, often at the higher-functioning end of the spectrum, get adept at masking or camouflaging many of their autism characteristics. Masking involves consciously suppressing natural autistic behaviors and forcing oneself to appear more neurotypical. This can take huge mental effort and energy. Common masking behaviors include:
- Maintaining eye contact during conversations
- Forcing oneself to engage in small talk
- Imitating social cues and facial expressions
- Adopting a more outgoing, vivacious persona
- Quashing stimming behaviors like hand-flapping
Additionally, many individuals on the spectrum develop robust compensatory strategies to minimize some of their autism-related challenges in daily life. Examples include using calendars and reminders to stay organized, avoiding overstimulating social situations, and focusing intently during conversations to follow along.
While masking and compensating help individuals blend in and function at a higher level, the constant effort involved can be mentally and emotionally exhausting. It can also obscure a person’s understanding of the extent of their innate autistic traits. This can make it harder to self-advocate for supports and accommodations. However, embracing one’s natural autistic behaviors and characteristics can enhance self-awareness and self-acceptance.
Late or Missed Diagnosis Can Delay Self-Understanding
Many individuals are not diagnosed with autism until late childhood, the teen years, or even adulthood. Reasons for late or missed diagnoses include:
- High-functioning presentation where there are fewer obvious disability indicators
- Effective compensatory strategies obscuring the extent of challenges
- Subtle manifestation in girls and women due to social camouflaging
- Lack of recognition from doctors and educators about signs
- Under-diagnosis of minorities due to cultural biases
Going through childhood and adolescence without an autism diagnosis means these individuals lack the self-understanding and external validation that comes with recognizing one’s difficulties stem from an underlying neurological condition. As a result, they may suffer more anxiety, depression, and poor self-esteem due to feeling inherently flawed or incapable without explanation. Having an autism diagnosis as an adult can therefore be extremely helpful in reframing decades of difficulties and giving meaning to lifelong struggles.
Accepting the Diagnosis is a Process
Even when diagnosed early in life, coming to terms with having autism and understanding oneself as an autistic person is an evolving process. Some common stages individuals may experience include:
Relief
Having a diagnosis provides explanation and validation for lifelong struggles with social, communication, sensory and other difficulties.
Anger
Frustration may arise around the impact of autism on one’s life, lack of support provided, or later diagnosis.
Grief
There can be sadness and grief around the loss of neurotypical experiences and opportunities.
Rejection
A desire to view oneself as just “different” rather than disabled due to autism-related stigma.
Exploration
Learning about autism and connecting with the autism community to understand oneself.
Self-Advocacy
Using one’s diagnosis to advocate for accommodations, services and acceptance.
Acceptance
Reframing autism as an integral part of one’s identity, not something to be cured or eliminated.
For many, coming to a place of embracing their neurodiversity takes ongoing self-reflection and the support of understanding communities. But developing self-awareness and pride in being autistic can greatly improve mental health, relationships and overall wellbeing.
Conclusion
In summary, the development of autism self-awareness is a gradual, life-long process influenced by a child’s cognitive maturation, social environment, stage of life, severity level, and access to supports. While young autistic children generally lack meta-perspective on their own challenges, self-understanding grows substantially by the teenage years and continues evolving through adulthood. However, some degree of difficulty with social reasoning, communication nuances, and emotional regulation often persists. Masking behaviors, robust compensatory strategies, and late diagnosis in higher-functioning individuals can also obscure the extent of innate autistic traits. But with supportive environments and communities, autistic individuals can learn to embrace their neurodiversity and use their self-knowledge to live full, enriching lives.