"They don't look autistic"
As a pediatric Speech Therapist, I have spent most of my career supporting autistic children and I would describe myself as being confident in identifying autistic characteristics. Thanks to modern day media, more information is being shared about autism, so it doesn’t take a specific career path or years of experience to better understand autism.
In case you didn’t already know, autism is characterized by 3 levels. The levels are based on the amount of support a person requires due to challenges with social communication and restricted, repetitive behaviors. Level 1 requires mild supports while Level 3 requires more substantial supports. While a person’s autistic traits can not be “cured”, their level of support can adjust over time.
While it may appear easier to identify and understand the needs of a person with a level 3 diagnosis, it is often very difficult to identify and understand the needs of a person with a level 1 diagnosis. Individuals with a level 1 diagnosis often require support with social interactions, inflexible behavior and intense, restricted interests.
“My doctor said they didn’t ‘seem autistic’ during our well visit, so they didn’t give us a referral for a developmental evaluation”
As you can imagine, identifying Level 1 autism is a lot more difficult as their characteristics are often more subtle. Many parents have suspicions of autism however when they discuss their observations with doctors, teachers, family members they are met with responses like “they don’t look autistic”.
My intention for this blog post is to share information and to help others know what Level 1 Autism “Looks Like” so we can have more understanding and compassion for those that need it.
Characteristics of Level 1 Autism:
Social Communication Differences: Difficulty interpreting social cues, such as tone, facial expressions, or sarcasm. Individuals may speak in full sentences but struggle with back-and-forth conversations, often having difficulty making friends
Behavioral Rigidity and Routines: High need for, and reliance on, strict routines and predictability. Last-minute changes or unexpected situations can cause significant stress or anxiety.
Limited Social Interaction: A noticeable reduction in interest in social interaction or difficulty initiating, along with “masking” social fatigue.
Restricted, Intense Interests: Intense focus on specific topics or hobbies, often to the exclusion of other activities
Sensory Sensitivities: Hyper-or hypo-reactivity to sensory input, such as sound, light, or texture.
Organizational Challenges: Difficulties with executive functioning, planning, and organizing tasks.
“One of my early intervention providers told me my child wasn’t autistic because they made eye contact”
Individuals who receive a Level 1 Autism diagnosis often experience anxiety, burnout, or feelings of being “misunderstood”. They may excel in areas that require high attention to detail while lacking the skills to engage in less structured social situations. They may be inflexible with their play and demonstrate difficulties with peer relationships. These challenges may become more apparent as social demands increase with age.
Many autistic individuals experience sensory sensitivities, which involve heightened or diminished responses to environmental stimuli, often leading to overwhelm or sensory seeking behaviors. Common examples include distress from fluorescent lights, loud noises, fabric textures, or strong smells, as well as reduced awareness of pain, cold, or heat.
Examples of Sensory Sensitivities:
Auditory (Sound): Covering ears due to unexpected, loud noises like sirens, or being distracted by faint background noises like humming electrical lights.
Tactile (Touch): Discomfort with specific clothing textures (tags, itchy fabric), avoiding or seeking certain food textures, and discomfort with light touch or being hugged
Visual: Finding bright lights overwhelming or painful
Olfactory/Taste: Strong reactions to perfumes, deodorants, or cooking odors; being a “picky eater” due to sensitivities to texture of flavors
Proprioceptive/Vestibular: Seeking heavy pressure (often crashing their body into furniture or objects), intense movement (spinning/jumping), or having reduced awareness of body position.
Interoception: Difficulty recognizing internal bodily sensations such as hunger, thirst, or feeling too hot or cold.
“When we know better, we can do better”
When we know better, we can do better….this quote is frequently running as my internal dialogue. When people do not know what autism, especially level 1 “looks like”, of course they wouldn’t know how to respond from a space of understanding and compassion.
Many parents share that they feel judged or even over hear comments such as “can you believe they let their child….” which only creates more stress on an already stressed out parent! Many parents describe their child’s needs as “invisible” because their needs are more subtle.
So what can we do to “be better”?
First we take time to have an open mind and learn more (if you are still reading, thank you for doing just that!)
Then we take action from a place of compassion rather than judgement. Rather than thinking what you would do differently, maybe consider “how can I be of support in this moment?” This could be something as simple as a smile or a practice of patience. A little gesture, goes a long way!
Last but not least, consider taking interest in what the other person is interested in. Receiving a diagnosis of Level 1 Autism doesn’t mean the person doesn’t want relationships and connection with others, it often means they don’t know how to initiate and maintain the social skills required to create said connections. When we take the time to show curiosity in things they find interesting, it gives them opportunities to share their knowledge, their gifts, and maybe even their talents and from that space, genuine relationships grow.
I hope this blog was resourceful! If you are needing support in understanding or connecting to the best resources for you or your child, please feel free to reach out for a free consultation call.