Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition that manifests in a myriad of ways, presenting unique challenges and strengths for each individual. With the recognition that ASD is not a one-size-fits-all diagnosis, the DSM-5 categorizes the disorder into three distinct levels, reflecting the varying degrees of support needed. This nuanced approach acknowledges the spectrum of cognitive abilities and the diverse profiles inherent in ASD, guiding caregivers and educators in crafting personalized support frameworks. As research in the field continues to advance, particularly with groundbreaking studies emerging in 2023, our collective understanding and resources grow, offering hope and actionable paths for improved outcomes. In this article, we’ll explore each level of ASD, the intersection of cognitive abilities with these levels, and offer practical advice for those providing care and education, underpinned by the latest findings and expert insights.
What is Autism Spectrum Disorder (ASD)?
Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition characterized by challenges with social interaction, communication, and the presence of repetitive behaviors and restricted interests. It’s a spectrum condition, meaning it affects individuals differently and to varying degrees. Recent research has underscored the genetic roots of ASD, with studies revealing specific mutations, like the BCKDK gene, that can lead to developmental impairments if left untreated. Understanding the spectrum is crucial because it underscores the diversity of ASD and emphasizes the need for individualized support and interventions.
Overview of the DSM-5 ASD Level Classification
The DSM-5, the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, classifies ASD into three levels based on the severity of social communication impairments and restricted, repetitive patterns of behavior:
- Level 3 – Requiring very substantial support: Individuals have severe deficits in verbal and nonverbal social communication skills, severely impairing functioning. They may show very limited initiation of social interactions and respond minimally to social overtures from others. There is also marked inflexibility in behavior, extreme difficulty with change, and other behaviors that significantly interfere with functioning across all contexts.
- Level 2 – Requiring substantial support: Marked deficits in verbal and nonverbal social communication are apparent, with social impairments visible even with supports in place. These individuals may initiate limited social interactions and show reduced or atypical responses to social overtures. They also exhibit inflexibility in behavior and difficulty with change that are apparent to casual observers and interfere with functioning in various contexts.
- Level 1 – Requiring support: Individuals with Level 1 ASD have noticeable impairments in social communication without support, difficulty initiating social interactions, and atypical or unsuccessful responses to social overtures. They may seem to have a decreased interest in social interactions. Additionally, their inflexibility in behavior can cause significant interference with functioning in one or more contexts, including difficulty switching between activities and problems with organization and planning.
The recent research advancements in ASD, particularly those conducted in 2023, have been pivotal in understanding the condition’s underlying genetic and neurodevelopmental abnormalities. These findings are not only reshaping our understanding of autism but also guiding the development of targeted interventions that could potentially reverse some of the symptoms associated with the disorder.
Now that we’ve looked at the levels of Autism at a high-level, let’s take a more detailed look at the three.
Level 1 Autism: Requiring Support
- Characteristics of Level 1 Autism: Individuals with Level 1 Autism often have difficulties with social communication. They may want to engage with others but struggle to initiate social interactions or respond appropriately to social cues. Conversational exchange can be challenging; while they might speak in full sentences, their to-and-fro conversational abilities are often impaired. Additionally, they may display a decreased interest in social interactions and have trouble making friends due to atypical approaches or misunderstandings of social norms.
- Challenges faced by individuals with Level 1 Autism: People with Level 1 ASD may face significant challenges in unstructured social situations that require them to spontaneously adapt to new activities or engage in social exchanges. They might also struggle with organization and planning, which can hinder their independence. These challenges can lead to feelings of frustration and anxiety, especially in settings that require flexibility and adaptability, such as school, work, or social gatherings.
- Strategies for support and development: For individuals with Level 1 Autism, support strategies may include social skills training, cognitive-behavioral therapy to help manage anxiety, and interventions that focus on building organizational and planning skills. Educational environments can offer structured socialization opportunities and explicit instruction in social norms and cues. Supportive measures might also include the use of visual schedules or technology-based aids to help with organization and task management3.
Level 2 Autism: Requiring Substantial Support
- Characteristics of Level 2 Autism: Those with Level 2 Autism typically exhibit more noticeable deficits in both verbal and nonverbal social communication compared to Level 1. They may speak in simple sentences and have limited engagement except when discussing narrow, specific interests. Their nonverbal communication is often marked by abnormal cues, and they have a considerable difficulty with change and transitions.
- Specific needs of individuals at this level: Individuals requiring Level 2 support need substantial assistance to engage in social communication. They often benefit from more intensive behavioral interventions and support within the educational system to cope with the social demands of the classroom. Their needs may also extend to the community and home environments where flexibility and adaptability are challenged daily.
- Educational and behavioral strategies to aid those with Level 2: Structured learning environments, individualized education plans (IEPs), and consistent daily routines can be beneficial. Therapeutic approaches like speech therapy, occupational therapy, and social skills groups can help improve communication and sensory integration. Furthermore, parents and educators can employ visual aids and teach coping strategies to manage behavioral inflexibility.
Level 3 Autism: Requiring Very Substantial Support
- Characteristics of Level 3 Autism: Individuals with Level 3 Autism present with severe communication deficits, often with minimal verbal skills and very limited initiation of social interactions. They typically do not respond to social overtures and may have minimal awareness of others in their environment. In addition, they experience significant difficulty with change, exhibit marked inflexibility in behavior, and can have intense reactions to sensory inputs.
- The role of caregivers and structured support: Caregivers of individuals with Level 3 Autism play a critical role in providing structured support and ensuring a safe, predictable environment. They may need to advocate for and facilitate access to intensive therapy services and support. Caregivers often work closely with a range of specialists, including behavior therapists, speech-language pathologists, and occupational therapists, to coordinate care and promote functional skills.
- Therapies and interventions for Level 3 Autism: Therapeutic interventions for Level 3 ASD are typically comprehensive and may include applied behavior analysis (ABA), intensive speech therapy for nonverbal communication methods, and occupational therapy for sensory integration. These interventions aim to increase the individual’s functional abilities, decrease disruptive behaviors, and improve quality of life. Augmentative and alternative communication (AAC) devices and strategies are also commonly used to support communication needs.
Each level of ASD presents distinct challenges and needs, which require individualized and targeted support strategies to enable individuals to reach their full potential. As research continues to evolve, it is likely that our understanding of how to effectively support individuals with ASD at each level will also continue to grow and refine.
The Impact of Cognitive Abilities on ASD
When we consider the impact of cognitive abilities on Autism Spectrum Disorder (ASD), it’s like looking at a spectrum within a spectrum. Just as ASD presents in various forms and intensities, cognitive abilities among those with ASD are equally varied. This variability is seen across all levels of ASD classification, influencing everything from how a person communicates to how they interact socially and process learning. For someone on the spectrum, their cognitive abilities could mean they are nonverbal and need substantial help or, conversely, they might possess high verbal and intellectual skills. It’s this broad range that makes it imperative for support strategies to be just as flexible and customized.
Digging deeper into the cognitive aspects, we find that the functioning of individuals with ASD is rich and layered, encompassing skills like executive function, memory, and information processing. These cognitive traits play out differently for everyone. Take someone with Level 1 ASD: they could be quite intelligent but still find organizing and adapting a real hurdle.
For those who care for and educate individuals with ASD, this means that no two days are the same, and no single strategy works across the board. Creating a supportive environment could mean setting up clear routines, using visual aids, or adapting teaching methods to fit the unique learning style and cognitive capabilities of each individual.
Adapting to the varying needs of those across the autism spectrum requires a blend of understanding, patience, and the willingness to collaborate with a team of specialists. Whether it’s working with speech therapists to enhance communication or engaging in ongoing learning about the latest in ASD research, the goal remains constant: to provide the most effective support for those with ASD, recognizing their unique strengths and facing their challenges head-on.
Recognizing and understanding the levels of ASD is vital in providing appropriate support and intervention for individuals with autism. By adapting strategies to meet diverse needs and utilizing the wealth of available resources, caregivers, educators, and communities can significantly enhance the quality of life for those on the autism spectrum. Continuing education and awareness are essential to ensure that each individual with ASD can achieve their full potential.
Further Defining the 3 Levels of Autism Through Feedback from ASD Experts
The Levels of Autism seem so clear in just 3 tidy bullet points. It never is, especially if you are a young adult or parent researching assessment, treatment, or transition program on this website. There could be co-occurring diagnoses or behaviors that are getting in the way of the successful functioning of your child or young adult. Your child may have had Occupational Therapy, Physical Therapy, Speech/Language in school or out of school, multiple psychological and neuropsych reports done in a school setting or privately. For the purposes of this blog, the FAQ’s below are geared towards families who are thinking about a residential setting that specializes in working with young adults people who may have an Autism 1 or Autism 2 diagnosis.
Please share the most common question you are most asked by a parent of a teen or young adult with ASD?
The most common question we are asked is typically related to how their son or daughter would “fit in.” Parents, understandably so, are sensitive to wanting to ensure their young adult will be with others that are “like them.” These questions present themselves in a couple of different ways but most commonly first present as questions are if their son or daughter will “look” like others or comes with a warning that their young or adult does not do well with others that “look different.” Through exploration, we usually find that the fear is rooted in the desire to have their young adult fit in.
Secondary to this question can be the very candid exploration of what level of autism our clients are diagnosed with and what they “look like”. Parents, stakeholders, and clients all ask this question, although it is often done so with hesitation. What I share is that regardless of level, or even diagnosis, the commonalities among our young adults have been a struggle to fit in or navigate social situations, a rigidity to seeing other viewpoints, or demonstrate executive functioning difficulties. While our population is primarily level-1, we have had young adults diagnosed as level 2 that have experienced success living independently as well. While the length of stay due to repetition may be needed or more coaching around sensory stimulation, it is important to look beyond the label and develop individualized plans.
– Jill Allen, Brightstone Transitions (GA)
I would say the most common question or discussion I have with parents is usually around how we help our students reach their greatest level of independence. Many parents are very worried about the future success of their child regardless of their Level 1 or Level 2 diagnosis, and what it will look like. Then you add in the additional struggles that many people with Autism experience and it creates this world of uncertainty that the majority of my parents fear. My number one goal when I am getting to know parents and their child is to provide as much love and support as possible while helping them understand that they are not in this alone. The fact is, the majority of the students we work with can be successful and have fulfilling lives. Partnering with our parents means that while the journey can be long and daunting, our parents are not traveling alone. We have all heard the phrase “it takes a village to raise a child”. As a village, we will work together to provide the best support system imaginable for each student to prepare them for successful adulthood.
– Marisa Davis, New Focus Academy (UT)
What are families MOST surprised with when they come for their first visit or interact with their teen or young adult?
Most families are surprised by the level of independence our young adults are not only achieving, but maintaining. When they tour and they see individuals similar to their son or daughter returning from a college class or a job, I think it gives them hope that it is achievable. – Jill Allen, Brightstone Transitions (GA)
This is one of my favorite moments to experience. There have been many times that parents have expressed so much joy after their first visit. Seeing their teen socializing with peers, using words to express their feelings instead of being met with frustration and yelling, enjoying activities together and even witnessing the small achievements like their teen trying a new food helps give encouragement and hope to the families.
One of my favorite memories was when a mother was dropping off her son for enrollment. While we were finalizing the admission, her son had left with staff to meet the other teens. When she was ready to leave, we went to go find him for one last hug. We eventually found him in the kitchen, surrounded by a bunch of peers, excited about a card game and getting to know each other. As I saw the tears fall, all she could say was that she had never seen her son so quickly accepted. In that moment, so much hope replaced her fears of hurt and isolation in his future.
-Marisa Davis, New Focus Academy (UT)
Like many other (treatment) programs, there are many things we have implemented to help keep our students safe and healthy during this time like increased cleaning, limited off-campus trips, limited approved visitors, and regular monitoring of staff and students for symptoms. But the number one thing we have tried to do is help provide a loving environment so the students feel safe and comfortable going through all of the struggles that are presenting due to the current pandemic. Our population struggles with change, unpredictable situations, and needing to get energy out, so we have tried to accommodate our activities on campus to meet the needs of our students. We have added several cool activities for the students to try out like making metal jewelry and frisbee golf. We have also permanently increased our staff to student ratios so we always have enough people to provide support when our students struggle. These are tough times for everyone, providing a loving and safe environment is the most important thing we can do.
– Marisa Davis, New Focus Academy (UT)
What is the biggest misconception about autism spectrum disorder?
I think the biggest misconception about autism spectrum disorder is the stereotype that can be created by movies or an assumption of what autism “looks like.” As referenced above, autism looks different in everyone. Our young adults have very unique personalities and are capable of being independent and living meaningful lives.
– Jill Allen, Brightstone Transitions (GA)
I have met many people who think because they have met one person with Autism, they have met all people with Autism, they are so very wrong. I have met extroverts, introverts, people with intense passions, people with very few passions, people that have been able to look me in the eyes when we talk, and others that are unable. Autism has many different presentations and never looks the same from one person to the next. There may be common struggles, but each person is unique and different. Because of this, it is very easy to discredit someone’s struggles and needs, especially if they are not as pronounced.
Autism is just as unique as the person that has it. I think as a whole, our society is starting to accept that someone with Autism can look just like you and me. Even more so, I believe that as a society we need to change our understanding of the word “Normal”, understanding that there is no such thing. We are all unique and who we are is defined only by who we choose to be.
-Marisa Davis, New Focus Academy (UT)
What do you wish you could tell parents of young children before calling your admissions number?
I wish that parents of young children could know two things. First of all, they are doing nothing wrong and that their child just learns differently, I feel that we come across a lot of families where there is a lot of shame and guilt because of perceived lack of success. Lastly, that skill development and self-esteem are so critically important for the development of our young people to be successful.
– Jill Allen, Brightstone Transitions (GA)
The more support and resources you can provide now will ultimately help your child more in the long run. Many people with Autism struggle with generalizing and need time and many chances to practice how to navigate situations effectively. The earlier we can apply the skills needed for adulthood the greater the chance of independence later. Keep in mind please, that this is a general statement and each child will have their own individual outcome of what that independence looks like. As parents we dream of what our child will become, we have our own hopes and dreams for their future. Sometimes we may need to adjust our interpretation of happiness and success to meet the abilities of our child. This doesn’t mean we can’t push our child or have expectations, it just means that sometimes we may be asking our child to accomplish goals that are far outside what they are able to achieve. You are an incredible parent.. Please give yourself the love, kindness, and forgiveness that you wish everyone would give your child. You are not alone and we are here to help you learn how to support your child in a way that will allow them to thrive!
-Marisa Davis, New Focus Academy (UT)
Why are Autism rates going up?
I believe that rates are going up due to awareness and access to testing and resources, it is also possible that there could be other contributing factors. Additionally, as more people are diagnosed with autism the stigma or perception of what it “looks like” goes down. You see now doctors, actors, chefs, etc. sharing their autism diagnosis and realizing that not only does it look different, but you can still live a great life. – Jill Allen, Brightstone Transitions (GA)
There have been many studies done on this. Some of the causes could be environmental, some could be genetic. Overall though, in my experience, I believe Autism rates are rising because more and more people are learning about Autism and how it affects people. I believe that the overall understanding of what someone with Autism looks like is changing. People are starting to recognize that there are many different characteristics and not this one size fits all category. Sadly many children and teens are misdiagnosed with other diagnoses before they are given their true Autism Spectrum Diagnosis. Fortunately, the more we know and learn about Autism the earlier it can be detected which will allow children to receive the resources they need at a younger age. -Marisa Davis, New Focus Academy (UT)
Is there anything else I should ask about?
I think that some of the biggest misconceptions about autism are that those diagnosed are not social and not empathetic. We have found the exact opposite of our young adults. They want to be social, in fact, they crave it. They just do not have the social pragmatics to navigate this world successfully or have negative past experiences that make them apprehensive. They can be incredibly sensitive to others and often overthink interactions and how they may have made someone feel or how they could have done better.
-Jason Cox & Jill Allen, Brightstone Transitions (GA)
References:
- American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision. Jan 1, 2022
- Jolynn L. Haney (2016) Autism, females, and the DSM-5: Gender bias in autism diagnosis, Social Work in Mental Health, 14:4, 396-407
- Loukusa S. (2021) Autism Spectrum Disorder. In: Cummings L. (eds) Handbook of Pragmatic Language Disorders. Springer, Cham. pg 45-78.
- Morales Hidalgo P, Voltas Moreso N, Canals Sans J. Autism spectrum disorder prevalence and associated sociodemographic factors in the school population: EPINED study. Autism. 2021;25(7):1999-2011.
- https://pubmed.ncbi.nlm.nih.gov/25308198/ Does WISC-IV Underestimate the Intelligence of Autistic Children? Anne-Marie Nader 1 2, Valérie Courchesne 1 2 3, Michelle Dawson 1, Isabelle Soulières 4 5
About the Authors
Brandon Park, Ph.D., is the founder and executive director of New Focus Academy (NFA). The primary focus of NFA is to work with neurodevelopmental disorders, such as those on the Autism Spectrum, who also have functional challenges in a residential setting including education tailored to this population with class sizes no larger than 8 students. The adolescents at NFA struggle with social skills and organizing their daily lives. They commonly have struggles with poor decisions, impulsive mistakes, and get easily overwhelmed. NFA uses clinical sophistication to develop practical life skills, form healthy stable relationships, and build self-esteem. Common diagnostic issues are related to Autism Spectrum Disorder, Nonverbal Learning Deficits, Low Processing Speed, Executive Functioning Deficits, Learning Disorders, Traumatic Brain Injuries, Prenatal Substance Exposure, and other related struggles.
Jason Cox, Co-Owner, and Jill Allen, Director of Business Development) at Brightstone Transitions (GA). Brightstone Transitions is a young adult transition program located in Gainesville, Georgia, just north of Atlanta. Brightstone is an innovative coaching and mentoring program for young men, women, transgender, and non-binary clients, ages 17.5 to 26. We offer a common sense, down-to-earth approach that is designed to assist young adults in reaching their potential.
Rachelle Steed, LCSW, a Primary Therapist and Clinical Director at Seven Stars, located outsides Salt Lake City, UT. Working with the multidisciplinary team, the family of the student to create individualized treatment plans to maximize the average three-month length of stay. Rachelle received her master’s degree in Social Work from Our Lady of the Lake University (TX). Rachelle has experience and specializes in working with young people who struggle with neurodevelopmental disorders, clinically complex, history of trauma, depression, anxiety, and substance abuse. Seven Stars commonly works with level 1 autism and will consider level 2 autism on a case-by-case basis. The structure, scaffolding, and routine that Seven Stars provides is critical for student success.