Guide: Assessing the Severity of Autism (Levels & More)
Open the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), and search for the autism listing. You’ll see a description of autism spectrum disorder (ASD) with three categories of severity.
Most of us understand how to rank symptom severity. When we have a cold, we take our temperatures and assess our aches and pains. When we have a sore throat, we take note of when it hurts the most and how much pain relief is needed.
It’s tempting to use these same simple observations to rank autism severity. Unfortunately, that isn’t an accurate way to measure the disorder.
Sometimes a doctor or other professional might give parents an assessment to take home and answer some questions about their child. Such at-home tests are opportunities for data collection and the results can be incredibly helpful for doctors.
But remember that only a professional can accurately diagnose and grade autism. Work with a clinician before you make any decisions about ASD. While you might get a very general idea with at-home tests, you can only get a diagnosis from a doctor.
Autism Levels Explained
Before 2013, researchers talked about autism in a completely different way. People with ASD symptoms could fit into several different disease categories. Some got the help they needed, while others did not.
Before the release of the DSM-5, doctors chose from four diagnoses when working with people who had ASD symptoms:
- Autistic disorder
- Asperger syndrome
- Pervasive developmental disorder–not otherwise specified
- Childhood disintegrative disorder
Everyone with these diagnoses exhibited varying levels of difficulties with social skills and communication, and most had restrictive or repetitive behaviors. Over time, researchers discovered that they weren’t identifying four different problems. They had patients living with just one disorder, but some had more significant signs and symptoms than others.
Per the DSM-5, ASD comes with three levels of severity.
- Requiring support: At this level, it’s tough to start or maintain contact with others, and someone like this might have few friends. It’s also hard to plan ahead or switch from one activity to another.
- Requiring substantial support: Limited social interactions are common, and verbal and nonverbal communication skills are limited. Repetitive motions are noticed by others. Coping with change is difficult or impossible without these self-soothing acts.
- Requiring very substantial support: Verbal skills are impaired, and it’s tough to hold or sustain conversations with others. Repetitive and other challenging behaviors and an inability to deal with change interfere with overall functioning.
The designations are descriptive, and they help experts set expectations and build treatment plans. But the severity levels aren’t rigid, the American Speech-Language-Hearing Association says.
Someone with autism may face escalating severity in specific situations, such as crowded rooms. Their symptoms may be more manageable or even unnoticeable in other situations. Severity levels can also fluctuate throughout the person’s lifespan.
Think of this as a snapshot of symptoms seen in one place at one time. They help an outsider understand how significant or severe things are right now. But they don’t explain what will happen in the future.
Why Does Screening Matter?
If severity can’t be used to pinpoint a person’s path to wellness, is it an important metric? Experts think so. Far too many people don’t get accurate autism diagnoses, and that means they could be missing out on the help they need.
Autism Speaks says ASD can touch all ethnic and socioeconomic groups. But minority groups tend to be diagnosed later in life, if they are diagnosed at all.
Early detection links people with autism to effective treatments. Therapies can enhance coping skills, build distress tolerance, and more. But those therapies don’t work unless they’re given, and a diagnosis starts the process.
Autism severity doesn’t qualify or disqualify someone for treatment, experts say. But severity scores can help treatment teams understand how someone’s autism symptoms flare or retract in specific situations. Scores can also help teams to assess the effectiveness of treatment.
How Do Clinicians Use Severity Levels?
The testing is complete, and the results are in. How will your treatment team use the data?
Severity skills may help the treatment team understand how to reach you or your child. For example, consider how treatment is adjusted to the following severity levels:
- Level 1: Verbal skills are impaired but intact. Sessions might involve pictures and playacting, but conversation and talking could also be appropriate. Therapy may focus on easing distress when moving from one task to another.
- Level 2: Social skills are limited, so therapists may spend more time building a relationship before work begins. Sessions may involve more images and playacting. Therapists look for repetitive acts as a sign of distress.
- Level 3: Completely nonverbal people need therapy sessions that focus on touch, imagery, or sound. Therapists may work to reduce the urge to self-harm, and this takes precedence over other treatment goals.
Teams may also use scores to understand the settings that increase distress. For example, if your child sits at a solid Level 1 at home but reaches Level 3 in the grocery store, sessions may focus on making shopping easier and less troubling for the child.
Severity scores can be quite useful to experts. But it’s tough for families and people with autism to self-diagnose or assess symptoms without help. Professional help is needed.
Can You Screen Your Child at Home?
The Centers for Disease Control and Prevention says ASD can sometimes be detected in children 18 months or younger. Parents play a key role in the diagnosis process, but they can’t do the work alone.
If you suspect your child has autism, at-home tests are exceptional data collection tools. No blood tests or invasive screening is required. Instead, you’ll watch your child and rank symptoms like the following:
- Poor communication skills
- Low sociability
At-home tests, such as the Observable Behaviors of ASD Scale, are accurate, researchers say. Parents give children scores on behaviors seen in the last 24 hours. The things they see, and the severity of symptoms they indicate, give experts very helpful information on what a child’s home life is like.
Bring your child to an appointment to discuss autism, and you’ll be given plenty of these tests to complete. Some teams use only one, while other treatment teams ask parents to fill out a good amount of paperwork at the first visit.
But as the Child-Mind Institute explains, questionnaires are just the first step in the diagnostic process. Often, they are broad and inclusive. The goal is to flag as many at-risk children as possible.
Take this test without guidance and validation, and you might believe that your child has significant autism when that’s not accurate at all. If you use these tools at home, far from the help of a doctor, you could get the wrong idea about your child and what’s needed to help them.
Screening, including at-home tests, can’t be considered standalone diagnostic tools. Doctors must build on your results with their own screening tools. Often, it takes multiple tests over an extended period of time to develop a complete picture of ASD in a child.
You cannot diagnosis your child with autism. You may suspect its presence, but a doctor needs to make the diagnosis.
Can You Screen Yourself at Home?
When we talk about ASD, we often focus on children. In reality, plenty of adults have autism. Sometimes, people don’t know they have ASD until very late in life. And when they find out, they wish they had learned the news much sooner.
It’s easy to find online, self-diagnosis tests. Some, like this one, involve a short series of questions. Answer them, provide your email address, and see the results in your inbox within a few moments.
For those with technical skills, research-based tests are available. These are the same tests doctors offer patients when assessing ASD symptoms and severity, and they’re available online.
Autism Speaks says self-tests like this can be helpful. If you’re not sure if your habits or thoughts fall into the ASD category, a test could give you the answers you need.
But it can be scary or even isolating to get unexpected results. And you may struggle to interpret what some of the tests measure, mean, and indicate.
Your Doctor Is Your Partner
Symptom severity can guide your treatment plan. It’s critical data for both you and your child. You can help to collect the data, but you should never use it without professional assistance.
Your doctor should be involved in all conversations about testing, test results, and interpretation. Take any or all of the at-home tests that seem appropriate to you. Mark the results as honestly and accurately as you can. And then make an appointment to discuss the results with a qualified professional.
You and your doctor might follow up your self-tests with talks about:
- Context. What happened right before the test? What happened right after?
- Accuracy. How much do you know about autism? Did that knowledge color your responses in any way?
- Emotion. How do you feel about the scores, whether they refer to you or your child?
- Next steps. How will the doctor either validate or question your responses? What further testing and diagnostic tools are available?
These conversations are critical. They help you to make sense of the data you collected, and they help you to find a path forward. You can’t do either of these things alone. You need your doctor’s help.
Autism can, in some people, cause both anxiety and repetitive behaviors. Testing can trigger those symptoms.
If you find that you’re repeating tests, or you’re subjecting your child to multiple tests, talk with your doctor. The tests could do you more harm than good, and it might be wise to take a step back. Let your doctor take the lead on how to move forward.
- Levels of Autism: Understanding the Different Types of ASD. (November 2019). PsychCentral.
- Autism Diagnosis Criteria: DSM-5. Autism Speaks.
- Autism. American Speech-Language-Hearing Association.
- Autism Statistics and Facts. Autism Speaks.
- Screening and Diagnosis of Autism Spectrum Disorder for Healthcare Providers. (February 2020). Centers for Disease Control and Prevention.
- Development of the Observable Behaviors of Autism Spectrum Disorder Scale. (2017). Therapeutic Innovation and Regulatory Science.
- What Should an Evaluation for Autism Look Like? Child Mind Institute.
- [Self-Test] Autism Spectrum Disorder Symptoms in Adults. (March 2020). ADDitude.
- Downloadable Tests. ARC.
- Researchers Develop First Autism Symptom Self-Assessment for Adults. (August 2015). Autism Speaks.
- What Should an Evaluation for Autism Look Like? Child Mind Institute.