The Little Birds Blog

This blog is written and edited by Julie Johnson, founder of The Little Birds. The information here reflects Julie’s personal and professional thoughts and opinions on parenting and educating children with special needs. Any health-related questions should be directed to your child’s pediatrician.

Most people know that autism is a spectrum disorder and the needs of autistic individuals vary immensely. The way that the DSM (Diagnostic and Statistical Manuel of Mental Disorders) categorized autistic people has changed over the past several decades since it was first published in 1980. While the DSM-III first defined autism as a separate disorder from schizophrenia, the concept of a “spectrum” was not introduced until 1994 with the publication of the DSM-IV.

The changes in the DSM-IV broke down autism into different categories under a “Pervasive Developmental Disorder” umbrella. Included was the formal introduction of the well-known Asperger’s Syndrome, a profile of autism associated with normal to above-average intelligence but struggles with social interactions, nonverbal communication and rigid/fixed interests. The Asperger’s profile has become popular in media- typically portrayed as the highly intelligent, extremely awkward but lovable character like Sheldon on The Big Bang Theory or Dr. Shaun Murphy on The Good Doctor.

The most recent publication of the DSM eliminated the PDD umbrella and therefore the Asperger’s Syndrome diagnosis. Instead, the autism spectrum is now divided into three distinct levels, which are based on the level of support needed by the autistic individual. Level 1 autistics require minimal support and while they will likely struggle with aspects of day-to-day life such as socializing, processing sensory input and/or having inflexible and rigid behavior, they are mostly able to lead normally functioning lives. Level 2 autistic individuals require “substantial” support and Level 3 autistics require “very substantial” support.

When my son was diagnosed with autism, his developmental pediatrician did not assign him a level because, as she explained, all 3-year-olds need substantial support. The levels of autism are easier to understand and recognize as children get older. However, making the distinction between an individual with Level 1 versus Level 3 autism is important because the type of intervention and treatment required to best benefit and support autistic children (and adults) will depend on their profile.

There are some parents and caregivers of Level 3 autistic individuals who would like to see the Level 3 (or profound autism) category break off completely and become a separate diagnosis. They feel that their lived experience as autistic caregivers is unlike that of families of Level 1 or 2 kids and therefore treatment recommendations and even insurance coverage should be different, reflecting the heightened needs of Level 3 kids.

On the other hand, there is a movement within the autism community around autism acceptance and neurodiversity-affirming approaches, meaning we should not try to “change” or “fix” autistic people but rather accept their differences as natural variations in human cognition. This approach prioritizes autonomy and changing environments to be more inclusive and sensory-friendly to foster belonging and empowerment.

As the parent of an autistic child (who most recently was labeled Level 2 by his developmental pediatrician mostly due to his specific medical profile), I am so grateful for the movement towards neurodiversity acceptance and pride. We will teach our kids that autistic people experience the world differently but are no less capable than others. We will foster our son’s many strengths while still supporting him in areas that he needs to grow. We are so fortunate that our son is able to communicate with us. He tells us about his day, and he tells us that he loves us.   

Caregivers and parents of children with profound autism often live in a different everyday reality.  While navigating parenting for all autistic children comes with great challenges,  parenting Level 3 kids is the side of autism that people rarely see portrayed on television. Through my work in the world of special education- at ABA clinics, public schools and in homes- I saw firsthand how profoundly autistic individuals can struggle in ways that are difficult to even imagine. Self-injurious behavior to the point of having to wear helmets or arm braces, eloping from the home so that doors and windows need locks, fecal smearing, aggression, eating non-edible objects- this is autism that most people don’t see up close. For these families, even inclusive and sensory-friendly spaces may be too difficult for their children to manage.  

If you can put yourself in the shoes of families of children with profound autism, it’s understandable that the push toward total acceptance is hard to swallow. For those families, they most certainly do want to “fix” their kids- or at least fix the symptoms. You can also understand how confusing it can be for two individuals- one who struggles with social interactions and rigidity and another who cannot communicate with vocal language, is aggressive and destructive and self-injurious- to require substantially different supports but carry the same diagnosis.

I want to make clear that individuals with profound autism are also loving, funny, kind and talented. Many have strengths that are powerful and unique and bring great joy to the world. Some Level 3 autistic individuals do not exhibit challenging behaviors at all but still require very substantial support in their day-to-day living due to impairments with communication, independence and safety awareness.

Two things can be true at once- we can advocate for autism acceptance and work toward a world that is more inclusive for all learners while also recognizing that for all families, autism is not something that can be simply accepted. Caregivers and parents of Level 3 autistic children are often left out of the conversation and isolated. Instead of arguing within the community about whether autism is a disorder to be “fixed” or a natural variance in human neurology, we should be focused on supporting families of autistic individuals who are struggling by providing them with affordable, quality therapies and respite supports. We should be having conversations specifically about what types of programming are best suited for Level 1 vs. Level 3 autistic kids. And while neurodiversity-affirming approaches sound wonderful in theory and are beneficial for many kids, parents of autistic kids should have a full picture, based on research, on what approaches will best support their individual kids long-term.

If any of the information on this website is incorrect or if there are additional resources you would like The Little Birds, LLC to be aware of, please contact Julie.