Understanding Autism
This month, I am focusing on one common neurodivergent diagnosis: Autism Spectrum Disorder (ASD). Understanding of ASD has changed a lot in recent years, so in this post, I’ll cover how and why this understanding has changed, some basic information about ASD, and what to do if this profile seems like it could fit your child.
If you missed my deep dive posts on other diagnoses, you can find those here: ADHD, Learning Disabilities (Dyslexia, Dyscalculia & Dysgraphia), and Mental Health Diagnoses.
Disclosure: This post may contain affiliate links, meaning I may get a small commission (at no cost to you) if you purchase through using a link. I only link products and resources I believe in. Thanks for your support!
A Note on Language
First, I want to make a note about language. The words we use matter. When talking about another person or group, the goal should be to use respectful and accurate language that the person or group feels comfortable with.
For most diagnoses, the current understanding is that person-first language is the most accurate and respectful. This means putting the person before the diagnosis, as in “a child with dyslexia” instead of “a dyslexic child.” This wording aligns with how we talk about most diagnoses, such as “a child with heart disease,” not “a heart disease child.”
However, in the case of Autism, I use identify-first language because large surveys of autistic people (such as this one from Autistic not Weird) have shown that it is the preferred phrasing for most (but not all!) autistic people. Identity-first language means that I will use “autistic” instead of “a child with Autism.”
How the Understanding of Autism Has Changed
Growing up, you may have experienced or heard of the diagnoses of Autism and aspergers. Aspergers was a diagnosis characterized by things like limited social interaction, repetitive movements, highly specialized interests, and ritual or routine-driven behaviors. At that time, Autism was a separate diagnosis with different criteria than it has now. However, researchers found that in many cases, more was similar than dissimilar for those with Autism and aspergers. It became clear that instead of several disorders with lots of overlap, it was more diagnostically appropriate to update and expand the criteria for an Autism diagnosis to encompass a broader range of experiences. In 2013, when the 5th edition of the American Diagnostic and Statistical Manual of Mental Disorders (DSM) was published, aspergers, Autism, and another related diagnosis called Kanner syndrome were removed. The diagnosis of Autism Spectrum Disorder (ASD) replaced them. This new diagnosis encompasses a range of Autism presentations and experiences.
The Current Medical Diagnosis
With the DSM-5, an attempt was made to categorize Autism spectrum disorder diagnoses by level and the presence or lack of co-occurring conditions. To that end, the diagnosis of ASD is currently broken up into levels that are supposed to correspond to the perceived amount of support an autistic person needs. However, this understanding of Autism has received a lot of pushback from autistic people and advocates because it views Autism from a neurotypical perspective, does not accurately capture the experience of many autistic people, and creates new misconceptions about the diagnosis. I’ll talk about these criticisms in more detail below.
With the caveat that there are many valid concerns with the current diagnostic criteria and descriptions of ASD in the DSM-5, I will still describe the diagnostic criteria as they currently stand. If you or your child have an Autism evaluation, this is the criteria and diagnosis language that will be used.
To receive a medical diagnosis of ASD, a person must have both of the following.
“Persistent deficits in social communication and social interaction across multiple contexts” (Must meet all 3 of the below subcriteria)
“Deficits in social-emotional reciprocity”
“Deficits in nonverbal communicative behaviors used for social interaction”
“Deficits in developing, maintaining, and understanding relationships”
“Restricted, repetitive patterns of behavior, interests, or activities” (Must meet at least 2 of the following 4 subcriteria)
“Stereotyped or repetitive motor movements, use of objects, or speech.”
“Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior.”
“Highly restricted, fixated interests that are abnormal in intensity or focus”
“Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment” ¹
A critical note on the above presentations is that they must present currently OR in the past. If the person has learned coping and masking skills, they may have presented a trait in the past but no longer do or only do it in some contexts. For example, your child may not have made eye contact when they were younger, but now they do because they were taught that they need to. This would count as meeting the criteria for “Deficits in nonverbal communicative behaviors used for social interaction” under the social communication and interaction umbrella. Similarly, your child might have had a lot of sensory struggles with clothing but hasn’t since you started buying tagless clothes and seamless socks. This would count as “Hyper- or hyporeactivity to sensory input” because the sensory sensitivity has not disappeared. It is just understood and accommodated.
In addition to the above presentations, the following three things must also be true to qualify for an ASD diagnosis.
“Symptoms must be present in the early developmental period.” “Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.” This means that the symptoms have a noticeable negative impact on one or more major life areas, such as work or school.
“These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.”
If all of the above criteria are met, the practitioner will make an ASD diagnosis. When determining this diagnosis, the practitioner is required to include the following details.
A level of severity. The levels are:
Level 1: Requiring support
Level 2: Requiring substantial support
Level 3: Requiring very substantial support
2. If the person also has an intellectual impairment. ASD and intellectual impairment commonly co-occur, so an assessment for intellectual impairment is required for an Autism assessment
3. If the person also has a language impairment. ASD and language impairment commonly co-occur, so an assessment for language is required for an Autism assessment
4. If the diagnosis is associated with another known condition, disorder, or environmental factor. [¹]
Limitations of this Framework
Now that we have covered the current criteria for a medical diagnosis of ASD, let's examine some of its limitations.
One common misconception created by the word spectrum and the use of levels in the diagnosis is that Autism is simply a straight line with people being either “more” or “less” autistic. When viewed through this lens, people can assume that if they don’t see a particular stereotypical Autism trait, such as hand flapping, it is because the person is not autistic or is “less autistic.” On the flip side, it can lead people to think that someone who does have a noticeable stereotypical aAutism trait is “more autistic.” In reality, every autistic person's experience is unique and can change by age and setting. For example, some autistic children find the predictability of their school environment to be a good fit with how their brains naturally work and, therefore, experience fewer symptoms at school. Other autistic kids find the social and sensory aspects of their school to be highly challenging, and experience increased challenges in this setting.
The idea of “more” or “less” autistic also can lead parents and caregivers to think that their child can’t be autistic because they can or can’t do a particular thing. For example, I often hear parents say, “I didn’t think my child could be autistic because they show empathy,” “can carry on conversations,” “can transition between activities,” or “don’t flap their hands.”
Another limitation of this framework is that it views ASD through a neurotypical lens and does not take into account how an autistic person experiences the world. Autistic creators and advocates like @neurodivergentlou and @itsemilykaty do a great job explaining why the current Autism diagnostic criteria and thinking around Autism fails to fully capture their experiences.
Emily Katy also has an amazing book, Girl Unmasked: How Uncovering My Autism Saved My Life, about her experience and what it was like to be diagnosed with Autism at age 16.
A Better Way to Understand Autism
If the current medical model of diagnosis is not a well-rounded or robust way to understand Autism, let’s look at some other ways to think about it that might be closer to the experience of autistic people. Many traits are associated with Autism, and each autistic person has a unique mix of these traits. These traits can also present differently in different settings and change with age. Importantly, these traits encompass both things that are noticeable to others, such as stimming or not making typical eye contact and things that may not be able to be noticeable to others, such as noise sensitivity and anxiety.
I think the best way to think of ASD is as a scatter of traits that look different for everyone instead of as a straight-line spectrum. With this conceptualization, it is easy to appreciate that someone is not “more” or “less” autistic. Instead, an autistic person has a cluster of symptoms and characteristics that are present to varying degrees.
Instead of thinking of Autism like this:
We can think of it like this:
*Note these are buckets of traits that are common with Autism, not an exhaustive list, and not currently defined by the DSM 5.
To illustrate what this scatter can look like and how it can help us understand a particular person's experience and needs, let's look at the profiles of two autistic teens. While both of these people have Autism, it looks very different for both of them, and the support that is helpful to each of them is also very different.
Sky excels in math and science. She graduated from high school, is going to college, and has a job. She is also very empathetic. As a teen, she was labeled as “stuck” developmentally due to things like her special interest in Disney movies and the difficulty she had making friends her age. She struggles with self-care tasks and social anxiety. The difficulty she had completing tasks labeled as “basic” led to her being seen as combative and misdiagnosed as having a behavior disorder. The intense behavior interventions that were recommended did not help with her underlying challenges. Once Sky was correctly diagnosed as autistic, she was able to get help for her anxiety and social concerns. Working with a therapist, she was also able to identify and address some of her sensory triggers. Once problematic smells and textures were minimized, she found it easier to complete necessary self-care tasks.
Since people do not usually look at Sky and think that she is autistic, she struggles to feel understood and supported. It took years for her to receive an accurate diagnosis, and she still sometimes encounters people who tell her that she “doesn’t look autistic” or tell her that her Autism “must not be very bad.”
Thinking of Autism as a straight line, people might think of Sky’s Autism like this because she has fewer traits that are visible to others or stereotypically recognized as traits associated with Autism.
However, if we think of Autism as a scatter of traits, Sky’s Autism would look more like this. With this model, we can appreciate that things like social unease, discomfort with eye contact, anxiety, and sensory sensitivity are things Sky is constantly navigating, even if they are not visible from the outside.
Juan, on the other hand, has traits that are often associated with Autism. He frequently fidgets, rarely makes eye contact, and often makes repetitive movements and statements. When overwhelmed or overstimulated, Juan can also be violent and explosive. These traits have often led people to focus on his perceived weaknesses rather than noticing that he is highly innovative and technologically inclined. Juan's agitation and symptoms are significantly reduced in a highly supportive environment. Through an individualized and assets-based lens, it is clear that Juan may not excel in a traditional school environment; however, with the right supports, he can thrive with work and hobbies aligned to his natural skills.
Thinking of Autism as a straight line, people might think of Juan’s Autism like this because he has more visible traits that are stereotypically associated with Autism.
However, if we think of Autism as a scatter of traits, Juan’s Autism could look more like this.
Current Diagnostic Options
If you think your child might have ASD, you are probably wondering about your options. The only way to receive an Autism diagnosis is through a full evaluation by a qualified provider (usually a psychologist or psychiatrist). In addition to providing helpful information, a diagnosis is required for medical insurance to cover therapies or supports outside of school.
If you are considering an evaluation and think your child could have ASD, be sure to ask the provider directly if they give ASD screeners and if they can give the ADOS assessment (Autism Diagnostic Observation Schedule). Practitioners need additional training to give the ASOS. Suppose you complete an evaluation with someone who can not administer the ADOS, and they recommend an ASD evaluation. In that case, you will pay twice for evaluations by two evaluators.
If you are looking for in-depth support through the evaluation process, you can find my course on evaluation here. It covers medical model and school-based evaluations, including form letters, scripts, and note sheets to make the process easier.
I am also available for one-on-one constellations about evaluation, IEPs, and supports. For more information, email info@reachlearningservices.com
More Resources
Here are some of my favorite Autism-friendly finds.
If you are looking for parenting support, check out this Empowered Parents program from Breann Colpitts.
And, as always, if you are looking for support on a specific topic and can’t find it, let us know here. My team and I are always looking for more ways to support this community :)
Resources
[1] American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author.