Why I Don’t ‘Look’ Autistic: Understanding Level One Autism
Level one autism is a subsection of autism spectrum disorder. Autism is called a ‘complex neurodevelopmental disorder’ but put more simply it means is that my brain is wired differently to neurotypical people. I think and perceive things differently to neurotypical people, and though you don’t see it, I find living in this complex and noisy world difficult. Autism is a spectrum of different traits and different levels of support needs. I may be relatively ‘functional’ in one area and have a lot of difficulty in another.
Diagnostically, people with autism are identified as having different levels of support needs depending on how incompatible their autistic traits are with neurotypical expectations and how much support they need in their daily life. The levels range from least to most incompatible.
If you think I don’t ‘look’ autistic or don’t ‘seem’ autistic, it’s probably because your idea of autism (as mine was before I started investigating) is based on level three autism, where the support needs are more obvious.
The Three Levels of Autism
Level 1: Requires Support
This level describes people who do not need a lot of support. People with level 1 autism may have a hard time communicating with neurotypical people, including their peers. For example, they may not say the right thing at the right time or be able to read social cues and body language. Adults with level one autism typically avoid social interaction and have few friends. This is me.
I constantly make social blunders despite having learned ‘social skills’ and having a lifetime of practice. I know what I am supposed to do, and I try to do the right thing, but my mouth opens and out comes something that I think is completely relevant to the conversation, but others find inappropriate. They look at me sideways and think I’m weird. It’s true, I am. It’s called autism.
You may think this is just being shy or awkward around people, but I am not shy or awkward. I am confident and at home in myself, I just communicate differently to ‘normal’ people, and I find it a real struggle to communicate in a way that is compatible with how neurotypical people interact. In social situations, I constantly battle my instincts. For example, I naturally get straight to the point, which others find abrupt or even terse. I can’t hack bullshit on any level and will call it out, and I find it really hard to not overshare.
You don’t see me as needing support because I’m really good at masking my autistic traits – unless you know me well – and I’ve created a life for myself where my special needs are met. Primarily by where I live (in a rainforest), the flexibility of the work I do (self-employed editor/author/publisher), and a daily routine of creative expression (see this website and my Etsy shop), yoga and meditation.
Level 2: Requires Substantial Support
People diagnosed with level 2 autism have a harder time masking their traits than those diagnosed with level 1 and may find it hard to communicate or socialize in ways that are accepted or understood by neurotypical society.
Level 3: Requires Very Substantial Support
People with level 3 diagnoses need the most support. People in this category will have many of the same traits as those with levels 1 and 2 but to a greater degree. It often means the autistic person is nonverbal or has very limited speech and restricted social communication skills.
Why I Don’t ‘look’ Autistic
Autism is an invisible condition, meaning that it cannot be discerned solely through physical appearance. Unfortunately, society often holds preconceived notions about what autism ‘looks like’. But autism is a diverse condition, and individuals with Level One Autism may not exhibit the same noticeable traits that are often associated with more severe forms of autism. While some individuals may exhibit certain behaviours or characteristics associated with autism, others may not.
Added to that, adults, particularly adult women, have learned to mask their autistic traits well. But that doesn’t mean that that masking isn’t a struggle. For instance, it can take me up to 2 hours to write an email to a difficult client because I have to be so careful to soften my communication so as not to appear terse. And writing such an email is intense and exhausting.
Myth vs. Fact: Common Misconceptions about Autism
There are several common myths surrounding autism that contribute to the misconception that one can identify autism solely based on appearance or the behaviour you can see.
Myth: Autism has visible characteristics.
Fact: Autism does not have any physical markers. It is a neurological difference that affects cognitive and social behaviour, and these differences are often masked so they are not noticeable, especially in level one autism.
Myth: Individuals with autism lack empathy.
Fact: People with autism are highly empathetic, so much so that we get overwhelmed by our ability to feel the pain of others. Often the way we handle this overload of emotional pain is to shut it off, to ignore it, and that comes across to others as a lack of empathy. If we start to express it, it may come out as a flood of emotion that no one can handle.
Myth: Autism is caused by vaccines.
Fact: Extensive research has proven that there is no link between vaccines and autism. Autism is a complex condition with genetic and environmental factors at play.
Exploring Level One Autism
Autism is often referred to as a spectrum disorder because it encompasses a wide range of abilities and challenges. Level one autism, previously known as Asperger’s Syndrome, falls on the milder end of the spectrum. Individuals with level one autism typically have good language skills but may struggle with social interactions and understanding non-verbal cues.
It is essential to note that the challenges faced by individuals with level one autism may not be immediately apparent. They may have difficulty initiating and maintaining conversations, interpreting sarcasm or jokes, or understanding social norms. These challenges can often lead to feelings of anxiety and isolation.
The Challenges of Level One Autism
While level one autism may not be immediately visible, it does present unique challenges for individuals. One of the primary difficulties is navigating social situations and forming meaningful connections with others. The struggle to understand social cues and norms can make it challenging to build and maintain friendships or engage in group settings.
Additionally, individuals with autism may face sensory sensitivities (bright lights and loud sounds, for instance) or difficulties with executive functioning. These challenges can manifest in various ways, such as difficulty with time management, organization, or coping with sensory stimuli like loud noises or bright lights.
The Hidden Struggles: Masking and Camouflaging in Level One Autism
One aspect of level one autism that often goes unnoticed is the phenomenon of masking and camouflaging. Masking refers to the act of concealing one’s autistic traits in social situations, while camouflaging involves imitating or copying neurotypical behaviours to fit in with others.
Many individuals with level one autism engage in masking and camouflaging as a way to navigate social expectations and avoid judgment or rejection. While these strategies may help individuals blend in, they come at a cost. Masking and camouflaging can be mentally and emotionally exhausting, leading to increased anxiety, depression, and a loss of self-identity. (I avoid this by minimising my involvement in social situations and knowing and accepting myself for who I am.)
Recognizing the hidden struggles of masking and camouflaging is crucial in providing support and understanding for individuals with level one autism. It is essential to create an environment where we feel safe and accepted for who we are, without the need to hide or conform.
Personally, I don’t camouflage – I accepted years ago that I was weird and would never ‘fit in’ – but I do mask in social situations because it’s necessary in order to communicate with neurotypical people.
Autism Diagnosis
Of course, there is more to it than I can cover in this article. In order to be diagnosed with autism you have to meet certain very specific criteria covering many different traits and behaviours (having one or two of them doesn’t make you autistic), and it is a very costly and time-consuming process. Adults like me who have learned to live with their challenges have nothing except surety to gain from having a formal diagnosis. But we could lose thousands of dollars if the assessors aren’t up to date with the latest research into adult autism (especially as it relates to woman). For this reason – and because no one wants to be autistic – self-diagnosis is accepted in the neurodivergent community. Psychology professionals will always say you should get a formal diagnosis – but people who find it hard to hold down a job simply don’t have the money. There are a great many self-diagnostic tools available with many adult-autism, diagnostic questionnaires available on the internet (look for the more comprehensive ones).
After coming up high in a multitude of self-diagnostic tests, I decided I wanted the opinion of a psychologist, and though I didn’t go for a formal diagnosis, after taking me through questionnaires and much talking over several intense sessions, she said she was pretty sure I was autistic, had ADHD and was gifted as well. I didn’t expect all that, but the more I learn, the more I realise that I do fit the criteria. It took me a while, and a lot of self-examination to finally accept that she was right. But people don’t ‘see’ me as autistic, and that’s because they have a stereotypical view of what autism is, and because I’ve learned to hide it.
Dispelling Stereotypes: Embracing Neurodiversity
Stereotypes surrounding autism can be harmful and perpetuate misconceptions. To truly understand and embrace level one autism, we must dispel these stereotypes and embrace neurodiversity.
Neurodiversity recognizes that neurological differences, including autism, are natural variations of the human experience. These differences should be respected, valued, and celebrated. By embracing neurodiversity, we can create a society that appreciates the unique strengths and perspectives that individuals with level one autism bring.
Conclusion: Redefining Autism
The perception that one can identify level one autism solely based on appearance or perceived behaviour is a myth that needs to be debunked. Autism is a complex spectrum disorder, and individuals with level one autism may not exhibit the more visible traits people often associate with autism. In other words, just because we can speak and engage with others and don’t spend all day rocking in a corner doesn’t mean we aren’t autistic.
Understanding and supporting individuals with autism requires recognizing our unique challenges, such as difficulties in social interactions and the hidden struggles of masking and camouflaging. It’s also important to recognise the value our unique perspective and ways of thinking bring to society. Don’t we need people with a fierce sense of justice and fairness who can cut through the bullshit? Well, I’m autistic, so it’s not surprising that I think so.
And a world that doesn’t overwhelm autistic people would be a better world for everyone.
It’s crucial that we redefine our understanding of autism through education and awareness. By doing so, we can break the stigma and misunderstandings around autism and create a society that celebrates the diversity of human experience.
References
Diagnostic Criteria | Autism Spectrum Disorder (ASD) | NCBDDD | CDC
The 3 Levels of Autism Explained – lanermc.org
Severe Autism: Understanding Level 3 Autism – Verywell Health
Understanding the Three Levels of Autism – Verywell Health
What Does Being Neurodivergent Mean?
I’m neurodivergent, but what does that mean?
Neurodiversity is a concept that is gaining recognition and importance in today’s society. It refers to the idea that neurological differences, such as autism, ADHD, and giftedness, are normal variations of the human brain. Being neurodivergent means having a brain that functions differently from the neurotypical population.
Understanding Neurodiversity
Neurodiversity is a term that was coined by Australian sociologist Judy Singer in the late 1990s. It challenges the traditional view that neurological differences are disorders that need to be fixed or cured. Instead, it recognizes the value and potential of different ways of thinking and processing information. Neurodiversity advocates argue that society should embrace and celebrate these differences rather than trying to normalize them.
What Does it Mean to be Neurodivergent?
Being neurodivergent means having a brain that functions differently from the majority of the population. It encompasses a wide range of neurological differences, including autism, ADHD, and giftedness. Neurodivergent individuals often have unique strengths and abilities that can contribute positively to society. However, they may also face challenges in areas such as social interaction, communication, and sensory processing.
Common Identities – Autistic, ADHD, Gifted
Autism, ADHD, and giftedness are three common neurodivergent identities. Autism is a developmental disorder characterized by difficulties in social interaction, communication, and repetitive behaviors. ADHD, or Attention-Deficit/Hyperactivity Disorder, is a condition that affects a person’s ability to focus, sit still, and control impulsive behaviors. Gifted individuals have exceptional abilities in one or more areas. These are widely cited as intellectual, academic, creative, leadership, and visual/performing arts but spiritual and emotional giftedness has also been noted. Giftedness is an area that is significantly under researched.
Challenges and Strengths
Being neurodivergent comes with its own set of challenges and strengths. Neurodivergent individuals may face difficulties in social situations, such as understanding social cues or maintaining eye contact. They may also have sensory sensitivities, making certain environments overwhelming or uncomfortable. However, neurodivergent individuals often possess unique strengths, such as exceptional attention to detail, creativity, and divergent thinking. These strengths can be harnessed and valued in various fields, including arts, sciences, and technology.
Exploring 2e (Twice-Exceptional) Individuals
Twice-exceptional, or 2e, individuals are those who are both gifted and autistic. 2e individuals often face unique challenges, as their exceptional abilities can be overshadowed by their disabilities. However, with proper support and understanding, they can thrive and make significant contributions to society. A 2eAuDHD individual has autism, ADHD and giftedness, traits from all areas of the spectrum.
The Importance of Recognizing and Embracing Neurodiversity
Recognizing and embracing neurodiversity is vital for creating an inclusive and accepting society. By celebrating neurological differences, we can foster an environment where everyone’s unique strengths are valued and appreciated. Neurodivergent individuals should not be seen as broken or in need of fixing, but rather as valuable members of our community. Embracing neurodiversity can lead to more diverse perspectives, innovative ideas, and increased empathy and understanding.
Adults – Late Diagnosis and Self-Discovery
Many neurodivergent adults go through life without being diagnosed or understanding their neurodivergent identity. Late diagnosis can bring clarity and a sense of self-understanding. It can explain why certain aspects of their lives have been challenging and provide a framework for seeking appropriate support. Self-discovery is also common among neurodivergent adults who may not fit the traditional diagnostic criteria but still resonate with the experiences and characteristics associated with neurodivergence.
Support and Resources for Neurodivergent Individuals
Neurodivergent individuals often benefit from support and resources that cater to their specific needs. This can include accommodations in educational and work settings, such as flexible schedules, sensory-friendly environments, and assistive technologies. Support groups and therapy can also provide a safe space for neurodivergent individuals to share experiences, learn coping strategies, and build a sense of community. It is essential to advocate for and provide accessible support and resources to help neurodivergent individuals thrive.
Advocacy and Promoting Inclusivity for Neurodivergent Individuals
Advocacy plays a crucial role in promoting inclusivity for neurodivergent individuals. This can involve raising awareness about neurodiversity, challenging stereotypes and stigmas, and advocating for policies that support neurodivergent rights and accommodations. Educating the public, schools, and workplaces about neurodiversity can help create a more accepting and inclusive environment. By embracing and celebrating neurodiversity, we can foster a society where everyone feels valued and included.
Conclusion: Celebrating Neurodiversity and Fostering Acceptance
In conclusion, embracing neurodiversity is essential for creating a more inclusive and accepting society. Being neurodivergent means having a brain that functions differently from the majority, and it encompasses a range of identities, including autism, ADHD, and giftedness. While neurodivergent individuals may face challenges, they also possess unique strengths and abilities that can contribute positively to society. It is crucial to recognize and embrace neurodiversity, provide support and resources, and advocate for inclusivity and acceptance. By celebrating neurodiversity, we can foster a society where diversity is celebrated, and everyone feels valued and included.
Read the webbook to get a sense of what it’s like to reflect on you life through the lense of being neurodivergent. Note, however, that, like all self-awareness journeys, it is a work in progress!
Making connections
If you are late-diagnosed neurodivergent, like me, who is interested in mind, spirit and creativity, and you’re looking to connect with others like you in an intimate setting, then click here to join my tribe.