What Is Level 2 Autism Spectrum Disorder

When I was in graduate school, the first thing I learned about Autism was, once you have met one person with autism, you have met one person with Autism. Fast forward to 2013, when the DSM-5 was published, how a child, adolescent, or adult with autism was diagnosed changed overnight. Previously, the DSM-4 had sub diagnoses of Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Disintegrative Disorder. And then poof, gone! It was a big deal, I would say for many it still is a big deal. Labels in the diagnosis that many had come to embrace, gone.

Even though it has been seven years since the DSM-5 came out, there is still confusion for some around the diagnosis. Additionally, clinicians use the word neurodiverse when speaking about ASD students because it takes the perspective that there is diversity of typical brain and presentation vs. a brain deficit.  Let's be clear -- that feels better and feeling good about a diagnosis is not a bad thing. There are two pieces that vary in severity that lead to an Autism Diagnosis. Social Communication (persistent & pervasive) like social interaction across restrictive repetitive patterns of behavior, interests, or activities. For a complete explanation see Autism Speaks because they parse out the pieces and use the APA guidelines to explain them. For the purposes of this blog, this is just a super quick overview.

What is Level-1 Autism? "Requiring Support" and is the least severe diagnosis in the DSM-5. A child or adult diagnosed with Level-1 may need support or scaffolding for communication, have verbal skills, may have friends, and may have trouble maintaining friendships. Social reciprocity is a weakness. Level-1 Autism from a behavioral perspective they are interested in keeping a schedule and struggle with change in the schedule and want to do things their way.

What is Level-2 Autism? "Requiring Substantial Support" and in the middle of the diagnosis in the DSM-5. Like Autism-1, there is language, however, the sentences are shorter, the topics limited, and non-verbal communication is a significant weakness. Autism-2 has more restrictive behaviors, interests, and will struggle more in social settings, changes to the schedule, and dealing with change could cause significant difficulty.

What is Level-3 Autism? "Requiring very substantial support" is the most severe diagnosis. Level 3 ASD show significant difficulties with social communication and social skills. Level 3 ASD may or may not have many words to communicate. Level 3 is what Hollywood puts on film. They may struggle with sensory input, they have restrictive or repetitive behaviors like rocking, echolalia, spinning things, or other behaviors that will maintain their attention.

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?

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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?

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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)

About the Authors

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.

Our typical client is that young adult who struggles socially hasn't been able to achieve success and wants their independence. Most of our clients are diagnosed with Autism Spectrum Disorder or share their characteristics. They are high-functioning but have been unable to find or lack motivation, struggle socially or academically, and haven't learned the life skills necessary to be successful. Our clients are capable of success, but for whatever reason, they have been unable to achieve/maintain that success.

Marisa Davis, Admissions Director at New Focus Academy (UT). New Focus Academy works with neurodevelopmental disorders, such as those on the Autism Spectrum, who also have functional challenges. These adolescents struggle with social skills and lack the ability to organize their daily lives. They also make poor decisions, impulsive mistakes, and get easily overwhelmed. To help these students, NFA will use clinical sophistication in working to create 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.

What Is Level 2 Autism Spectrum Disorder

Source: https://www.allkindsoftherapy.com/blog/defining-the-levels-of-autism-spectrum-asd-faqs

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