Understanding and navigating the world of neurodivergent care is essentially like learning a new language. It can be confusing to understand all the different terminology, especially because there are so many words that overlap in meaning or sound similar.
Navigating new diagnosis as a parent
It’s been seven years since my son was diagnosed with autism, and one thing I’ve realized is that the words are important. Especially before you start asking important questions, and getting important answers. For example when the term ‘sensory processing’ was being used by our occupational therapist, I guessed at the definition because I was familiar with the term sensory. I defined ‘sensory processing’ as touches, tastes, and smells that my child liked or didn’t like. I never truly understood why our OT was bringing it up over and over, or why the fidget toys he recommended were more than just something to play with.
So you might be wondering why I didn’t just ask. The answer is I didn’t know what I didn’t know. I didn’t know that sensory could mean something more than just taste or smell. I didn’t understand that the lived emotional experience of my child was 100% linked to his interpretation of sound, sight, touch, taste, smell, movement, and physical sensations. I didn’t know that if he wasn’t able to move his body in a self-regulating way at school (like jumping up and down), then he might have a meltdown at home. I didn’t know that repetitive behaviors (like my son saying the word ‘chicken nugget’ ten times in a row), were his way of processing the world rather than a way of acting out.
But here’s the thing — how on earth was I supposed to know this stuff? How was I even supposed to know which questions to ask? This is why I’m passionate about the work we’re doing at Avela Health. Our clinicians are able to provide expert guidance, while our parent community offers support from others who get it.
Here is my starter list of essential words that every parent should understand in order to clearly advocate for their child, get the most out of services, or just understand what the clinicians are talking about. I’ve also added some common misconceptions around these terms.
Helpful terms to understand
Neurodivergent, Neurodiverse, and Neurodivergent-Affirming
Confusion: Parents may not understand the differences between these terms or how they apply to autism.
Neurodivergent refers to individuals whose brain functions differently from what is considered “typical,” including those with autism, ADHD, dyslexia, and more.
Neurodiverse describes a group of people that includes both neurodivergent and neurotypical individuals (e.g., a classroom with autistic and non-autistic students is neurodiverse). The idea is that everyone’s brain is different–neurodiversity is the human condition.
Neurodivergent affirming means accepting and valuing neurodivergent traits as part of an individual’s identity rather than trying to change or “fix” them, focusing instead on supporting their unique strengths and needs.
Developmental Delay
Confusion: Parents might think this means their child will “catch up” over time.
Explanation: A developmental delay means a child is not meeting typical developmental milestones at the expected time. For neurodivergent kids, this delay often reflects a different trajectory of development rather than something they will “grow out of.”
Co-Regulation
Confusion: It sounds like a therapy term that parents might not relate to their role.
Explanation: Co-regulation is the process of caregivers helping children manage their responses to emotions by staying calm and providing comfort, structure, and support.
Sensory Processing
Confusion: Parents might assume sensory issues are just about sounds or textures.
Explanation: Sensory processing relates to how the brain interprets sensory input (e.g., touch, sound, movement). Children can be over- and/or under-responsive to sensory input, dramatically affecting their behavior and emotional state.
Repetitive Behaviors
Confusion: Parents may not see how behaviors like lining up cars or flapping hands are repetitive or why the term repetitive is being flagged as important.
Explanation: Repetitive behaviors involve doing the same action over and over, like lining up cars in a specific order, spinning objects repeatedly, or watching the same video clip over and over. For autistic children, these behaviors can provide predictability, help with focus, or be a way to self-soothe or process sensory input.
Stimming
Confusion: This term may be new and misunderstood as problematic.
Explanation: Stimming is short for “self-stimulatory behavior” (e.g., rocking, spinning, or vocalizing). It’s a way for many autistic people to regulate emotions, focus, or express excitement. Stimming is often a healthy and necessary outlet for self-expression and self-regulation.
Meltdown
Confusion: Parents may not understand what a meltdown looks like or what causes it.
Explanation: A meltdown is an intense response to being overwhelmed by sensory, emotional, or environmental input. It happens when a child is unable to cope with the situation and loses control of their emotions or behavior. Meltdowns are not manipulative or intentional; they are a sign that the child is feeling completely overwhelmed and needs support to feel safe and calm again.
Functional Communication
Confusion: Parents may not understand how this applies if their child isn’t speaking.
Explanation: Functional communication means ways to express needs effectively, whether through words, gestures, pictures, sign language, or communication devices. It’s about finding the best way for the child to communicate their needs, even if it’s not using speech.
Executive Functioning
Confusion: The term sounds technical and hard to grasp.
Explanation: This refers to cognitive skills that help people do things like planning, organizing, and managing time. These are often areas of difficulty for neurodivergent children, which can affect daily routines and schoolwork.
Augmentative and Alternative Communication (AAC)
Confusion: Parents might feel intimidated by this term.
Explanation: AAC refers to tools like picture boards, sign language, or communication devices that help children who don’t use speech communicate effectively.
