Autism Spectrum Disorder (ASD) is considered a developmental disorder, in that typical developmental markers, noted physiologically, mentally, and behaviorally are different from established standards. Sometimes this can be recognized at a very early age with differences in developmental milestones related to sitting, walking, crawling, toileting, etc. Autism can also be noted by variance in attachment needs, verbal and nonverbal communication, and eye contact. Limited interests, rigidity around certain concepts, sensory issues, and many other atypical developmental characteristics are marked, but not uniform. The exact population of those affected by ASD has been commonly estimated to affect 1 in 44 children 8 and under in the United States, yet many higher functioning young people get their diagnosis in adolescence or even adulthood, and new research is revealing how often females are under-diagnosed (Hanley 2016; Hidalgo et al 2021).
What are the 3 Levels of Autism?
There are three levels noted for ASD as defined by the DSM 5 (APA DSM 5 2021). Autism is a neurodevelopmental disorder that affects behavior, social skills, and communication skills. While there is a separation between social communication and restricted and repetitive behaviors, more often than not, both areas are typically within the same category. This discussion focuses more on the social dynamic and functional challenges as being similar. More nuanced understanding is best done by a psychological or neuropsychological evaluation that will include an assessment of cognitive abilities, which can present as atypical.
Level 1 Autism: Requiring Support
Autism Spectrum Disorder Level 1 is commonly known as “high-functioning” and often was referred to as Asperger’s in the past. It is therefore considered to be the mildest form of Autism. Adolescents often have challenges with communication and social skills learning within this level. They may miss social cues or struggle with back-and-forth conversation. It is common for adolescents to struggle with friendships at this level. Organizing and planning may be difficult or task initiation. A unique thing to understand about this group is that they often are diagnosed later in life as their milder symptoms are not as noticeable or obviously problematic. Additionally, they typically have enough social awareness to realize they are missing social dynamics, and do typically want friendships. However, while they miss some social cues and interactions they often are aware they are different and not always staying up with their peers. This becomes more prominent in adolescence and leads to anxiety and depression, distress and frustration, and can lead to school avoidance and anger outbursts.
As noted by the DSM 5 and other research the struggle can be seen in initiating, continuing, and properly ending social engagement. There is also difficulty understanding appropriate boundaries of what to share or not share, reading and providing nonverbal social cues, and properly evaluating the nuance of communication (APA DSM 5, 2021; Loukusa, 2021).
Level 2 Autism: Requiring Substantial Support
The diagnosis of Autism Spectrum Disorder Level 2 includes more significant challenges that impair day-to-day functioning. The deficits with communication are usually greater and the social skills gaps are often wider especially as they move into middle school where social dynamics are more nuanced and complex. The deficits noted above become more prominent and persistent. The people in this category are more notably awkward, and nonverbal communication is especially difficult. Eye contact, spatial awareness, sensory sensitivity, awkward interpersonal interactions are often notable in this population. Adolescents who have level two autism often have difficulties moving from one activity to the next (transitions), difficulty when plans change or being placed in new situations (adaptability), and have notable prominent patterns of rigid thinking processes or perseverations on the same topic (thought fixation). Additionally, it is common to have intense fixated interests (e.g., knowing everything about World War II tanks, but not necessarily any other tank) and repetitive behavior movements (such as hand-flapping, fidgeting with objects, or body rocking, are done in a specific pattern).
Level 3 Autism: Requiring Very Substantial Support
Autism Spectrum Disorder Level 3 is the most severe form of Autism. People in this category will have many of the same patterns of behaviors and sensory struggles as those with levels 1 and 2 yet this is typically more severe. People with ASD level 3 have problems expressing themselves both verbally and nonverbally, and may not verbally communicate with words. This more severe struggle can cause significant impairment in social connection, adapting to change, being flooded by sensory overload, and engaging in perpetual repetitive behaviors.
Cognitive Abilities and Autism
In relation to function challenges, an important aspect to understand is the intersection between intellectual abilities/cognitive processes and ASD level. For example, a young person may have Level 2 ASD, but a strong stable cognitive profile with no major intellectual deficits can result in a great deal of strength and potential for success, whereas a student with ASD level 1, with lower cognitive abilities or large disparities in their cognitive abilities/intellectual scores on an IQ test may functionally have a lot of struggles. Thus, it is important to understand their Autism level in combination with their cognitive strengths and weaknesses. Additionally, there is growing evidence from NIMH that the WISC-IV FSIQ continues to underestimate the intellectual ability of Autism Children, requiring skilled clinicians who specialize in ASD to understand and better assess these students correctly.
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)
At your school or program, how have you had to change the way you operate to keep the ASD clients safe during the COVID-19 pandemic?
We are a community-based program. We have had to make several adjustments to our programming to keep our population safe during the COVID-19 pandemic. We have limited our interactions in the community such as going to fitness centers, movies, etc. Instead, we have creatively found ways to engage our young adults on-site while still maintaining social distancing. This time has allowed us to go “back to basics” with some activities such as budgeting, vehicle/home maintenance, job preparation skills (resume building, interview preparation, etc). While we still have staff traveling in to provide the support we ensure safety through daily temperature checks and limited interactions with other parts of our program.
– Jill Allen, Brightstone Transitions (GA)
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.