When your child receives an autism diagnosis, you may experience feelings of sadness, anger, even frustration. As you seek more information about the nature of autism spectrum disorder, it’s not unusual to also feel confused about the specifics related to your child, says Jennifer Thomas, Ph.D., BCBA-D, LBA, Director of Clinical Standards at Healing Haven, a Madison Heights-based ABA therapy center for children and teens.
Since the term “autism” was coined in 1943, there have been various methods used to describe the level of severity or to pinpoint where an individual appears on the spectrum. Your child’s diagnosis may contain references to specific levels — Level 1, Level 2 or Level 3. This diagnostic approach came into common usage in 2013 when the latest Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was published.
“Parents often want to know what these levels mean and how they relate to what they should do for their child,” says Dr. Thomas. “These levels are a general guide to inform a parent how much support is likely needed for their child.”
But what do these levels mean? And how might they affect the services and support your child will receive? What if your child’s diagnosis doesn’t include any reference to these levels? We asked Dr. Thomas all these questions and more — and she shared what parents need to know to better understand the three levels of autism.
Why are the autism levels important to know?
Fundamentally, the level or levels indicated in a child’s diagnosis can indicate how much support they will benefit from and how much assistance they are likely to need in daily life. The level is determined by those performing the evaluation.
“What parents need to know is that it is a time stamp. A moment in time. The diagnosis doesn’t define your child. It’s the opinion of the comprehensive evaluation made by a professional or a team of people and it’s not necessarily representative of the whole child,” says Dr. Thomas.
Autism levels, demystified
Level 1
Level 1 generally indicates that the child faces or will face social challenges that require some support. They may have difficulty responding to others, initiating conversations with others and remaining engaged in conversation. They may also prefer following specific routines and feel uneasy in new environments.
“This level can often go under the radar until about age 10, or closer to the pre-teen years. A child at this level may be able to be supported by a general education setting,” explains Dr. Thomas. “When a child comes in with a new diagnosis at age 10, we typically know they are at a Level 1.”
When the child grows and has increased social interactions with peers, they may miss the nuances and gestures required to take in the full meaning of a social exchange, which can make it difficult to develop and maintain friendships. Fortunately, specialized support can help older children and teens learn how to engage in social environments.
Level 2
Children with a Level 2 diagnosis need more support to learn skills that other children learn more easily. They may express interest in only very specific topics and have difficulty understanding facial expressions and other nonverbal communication. Because they may struggle to cope with change, they find daily functioning more difficult. They may become distressed when faced with a new environment.
“A child diagnosed at Level 2 will typically need Applied Behavior Analysis therapy several times a week and may need speech therapy and occupational therapy. They may also need help with behavior challenges,” says Dr. Thomas, adding that at this level, children are more likely to be in a self-contained classroom at school where they have a paraprofessional or aide to support them.
Level 3
At Level 3, a child has more profound or extensive manifestations of autism spectrum disorder. They may experience extreme distress if they are required to change focus to a new task. They may have difficulty forming friendships or demonstrate little interest in others and limit their interaction with peers.
They may also have a dual diagnosis of intellectual developmental disorder or other medical condition, such as a seizure disorder. At Level 3, children will need a relatively high level of support and services to develop communication and social skills, and other skills needed for daily living.
More about autism levels
The latest DSM indicates that a diagnosis of autism spectrum disorder must include two components: struggles or delays in social communication and social interaction and restricted repetitive behaviors, interests and activities.
“Each of these criteria should be assigned a level,” says Dr. Thomas. For example, a child may be considered at Level 1 for the social criterion, but at Level 2 for the behavioral criterion.
However, the assignment of a level is a general classification to help understand the current support needs in each of these categories. Some children can, with behavioral intervention, move to a different level such that they require less support over time. Regardless of the detail included in the diagnosis, your ABA therapy center should perform a thorough assessment when they begin working with your child.
“Our assessments are more granular and specifically related to skills and behaviors. We look at all the domains, such as fine and gross motor, visual performance, social communication and initiation — we get nitty-gritty about it. We need to know exactly what skills a child has, and the same behaviorally, even under what conditions behaviors occur,” says Dr. Thomas.
When you meet with your child’s BCBA, be sure to ask about what they have learned from their assessment and what this information might mean for the level of services your child will receive, and how you can best support your child at home.
Your child is an individual, not an autism diagnosis
Dr. Thomas encourages parents to look beyond the leveled diagnosis and recognize that each child is an individual with inherent strengths and skills — as well as areas where they could benefit from additional support and skill-building.
“In general, the DSM puts people in boxes so that they can seek out help and the person helping them can know where to start,” says Dr. Thomas. “We know that humans do not fit in boxes. We take great care to recognize, in great detail, all of the skills our clients have, including language, social, self-help and so many others.”
As with many issues related to your child’s autism, their “level” is another data point that helps determine the services and support your family will need. Be sure to talk with your child’s BCBA and autism therapy team for more specific information about your child’s individual needs.
Expertise brought to you by Healing Haven. Learn more at thehealinghaven.net.
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