Autism and Neurodiversity

DSM-V

The DSM-5-TR

The DSM-5-TR (Diagnostic and Statistical Manual of Mental Disorders 5th Edition, Text Revision)  is produced by the American Psychiatric Association. It is used by professionals like psychiatrists, paediatricians, psychologists, speech therapists, occupational therapists when diagnosing autism. It contains a list of the signs and symptoms (at ETHAN we prefer the term characteristics) of autism spectrum disorder (ASD) and how many of these must be present to confirm a diagnosis of autism.

Please note: This section is for educational purposes and is not a substitute for medical advice or to meant to be used as a primary diagnostic tool. The language is from the DSM-5 and much of the language is based on the medical model, is deficit-based and does not highlight the core strengths of autism (as what is being shown in many research papers).

To meet the criteria for Autism as per the DSM-5-TR , five groups of diagnostic criteria must be met (A-E). The biggest groups are criteria A and B. Criteria A links to social, communication, and relationship differences, while criteria B speaks to routine, structure, repetition, special interests, and sensory issues. The other criteria are used to help differentiate autism from other conditions and/or diagnoses.

Autism: Criteria A

There are three subcategories for criteria A of Autism plus at least two of four types of restricted, repetitive behaviors. All three subcategories must be met in order for criteria A to be met. If a person has 2 of the three subcategories, criteria A would not be met for autism. 

Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

    1. Deficits (Differences) in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
    2. Deficits (Differences) in nonverbal communicative behaviours used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
    3. Deficits (Differences) in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behaviour to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Autism: Criteria B

All three subcategories need to be present for the DSM-5 criteria A for autism. For criteria B to be met, only 2 of the four subcategories must be present. Criteria B broadly speaks to the need for routine, structure, knowing what to expect, and our sensory challenges. The direct language from the DSM-5 reads, “Restricted, repetitive patterns of behaviour, interests, or activities, as manifested by at least two of the following.”

Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

    1. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behaviour (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
    2. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
    3. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

In the DSM, the last few criteria of any diagnosis code typically have to do with the disqualifies or rule-outs. The same is true here for Criteria C-E.

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior. For either criterion, severity is described in 3 levels: Level 3 – requires very substantial support, Level 2 – Requires substantial support, and Level 1 –requires support.

Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

  1. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
  2. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
  3. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify if:

With or without accompanying intellectual impairment

With or without accompanying language impairment

Associated with a known medical or genetic condition or environmental factor

(Coding note: Use additional code to identify the associated medical or genetic condition.)

Associated with another neurodevelopmental, mental, or behavioral disorder

(Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].

With catatonia (refer to the criteria for catatonia associated with another mental disorder)

(Coding note: Use additional code 293.89 catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.

More simply put:

Criteria C: Autism is a neurodevelopmental condition (i.e., a neurodivergence). It is regarded as inborn and not acquired, and there must be evidence of it from early in life. It is important to realize (and the DSM includes states this) that Autistic traits may not become obvious until the person is under undue stress or in unsupportive environments. A person may also learn to mask Autistic traits early in life and in such cases may escape detection until adulthood. 

Criteria D: These experiences must cause suffering. To meet any diagnosis in the DSM, this is essentially a requirement. It must either “impair functioning” or cause significant distress. For this reason, there are some professionals who say that a person may be Autistic but may not meet the criteria for Autism Spectrum Condition. For example, a person may have an Autistic neurotype but experience no difficulty related to it and therefore not identify with criteria D.

Also, note that criteria D says “or in other important areas of functioning” mental health and emotional health are also areas of functioning! This language leaves it open for a clinician to consider the impact traits have on a person’s emotional and mental well-being. This is critical when assessing high-masking Autists.

Criteria E basically covers the importance of not mixing autism with intellectual disabilities. A person may struggle to pick up social cues and struggle socially due to an intellectual disability, but it isn’t autism. Intellectual disabilities and autism co-occur together at high rates, so it can be difficult (and important) to identify and sort out the differences. That is why it is important for professionals to tease out exactly what the diagnosis is and to consult the DSM-5 for other medical, genetic or environmental factors that could mask as autism or co-occur with autism.

Tip to parents: A diagnosis for autism should be done by a multidisciplinary team. A paediatrician (needs to rule out medical, metabolic and developmental conditions),  A neurologist (to evaluate brain functioning), speech and occupational therapists (focusing on speech, language, motor, sensory and developmental functioning) and psychologists/psychiatrists ( who can rule out any other mental, emotional or psychological conditions). Putting all these inputs together helps with establishing clear diagnosis.

Neurodiversity

Very simply, neurodiversity refers to the different ways a person’s brain processes information. It is the idea that all brains are diverse in how they work – no two brains or nervous systems are the same.

The term Neurodiversity was first used by Judy Singer, an Australian Sociologist, as an alternative to the deficit-based medical model. She highlighted notable strengths  of the autistic population like abilities to focus, recognize patterns and to remember factual information. It embraces the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be seen as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions. (Steve Silberman. Neurotribes. The Legacy of Autism and Neurodiversity)

Neurodiversity is an umbrella term used to describe a number of these variations.

  • Autism, or Autism Spectrum Conditions
  • ADHD: Attention Deficit Hyperactivity Disorder, or ADD: Attention Deficit Disorder
  • Dyscalculia
  • Dyslexia
  • Dyspraxia, or Developmental Coordination Disorder (DCD)

Bear in mind that there are a number of other examples of how brains can process information differently. Some people consider these to be part of the ‘neurodiversity’ umbrella and others like to keep them separate – there’s no right or wrong answer. In the broadest sense we are all neurodiverse from each other.

Autistic Lens

The views on autism from the perspective of The Autistic Self Advocacy Network (ASAN), a nonprofit organization run by and for autistic people, is presented below.

According to ASAN  autism as a developmental disability that affects how autistics experience the world around them. Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are. 

Autism has always existed. Autistic people are born autistic and we will be autistic our whole lives. Autism can be diagnosed by a doctor, but you can be autistic even if you don’t have a formal diagnosis. Because of myths about autism, it can be harder for autistic adults, autistic girls, and autistic people of color to get a diagnosis. But anyone can be autistic, regardless of race, gender, or age. 

Autistic people are in every community, and we always have been. Autistic people are people of color. Autistic people are immigrants. Autistic people are a part of every religion, every income level, and every age group. Autistic people are women. Autistic people are queer, and autistic people are trans. Autistic people are often many of these things at once. The communities we are a part of and the ways we are treated shape what autism is like for us. 

There is no one way to be autistic. Some autistic people can speak, and some autistic people need to communicate in other ways. Some autistic people also have intellectual disabilities, and some autistic people don’t. Some autistic people need a lot of help in their day-to-day lives, and some autistic people only need a little help. All of these people are autistic, because there is no right or wrong way to be autistic. All of us experience autism differently, but we all contribute to the world in meaningful ways. We all deserve understanding and acceptance. 

Every autistic person experiences autism differently, but there are some things that many of us have in common.

  1. We think differently.We may have very strong interests in things other people don’t understand or seem to care about. We might be great problem-solvers, or pay close attention to detail. It might take us longer to think about things. We might have trouble with executive functioning, like figuring out how to start and finish a task, moving on to a new task, or making decisions.

    Routines are important for many autistic people. It can be hard for us to deal with surprises or unexpected changes. When we get overwhelmed, we might not be able to process our thoughts, feelings, and surroundings, which can make us lose control of our body.

  1. We process our senses differently.We might be extra sensitive to things like bright lights or loud sounds. We might have trouble understanding what we hear or what our senses tell us. We might not notice if we are in pain or hungry. We might do the same movement over and over again. This is called “stimming,” and it helps us regulate our senses. For example, we might rock back and forth, play with our hands, or hum.
  1. We move differently.We might have trouble with fine motor skills or coordination. It can feel like our minds and bodies are disconnected. It can be hard for us to start or stop moving. Speech can be extra hard because it requires a lot of coordination. We might not be able to control how loud our voices are, or we might not be able to speak at all–even though we can understand what other people say.
  1. We communicate differently.We might talk using echolalia (repeating things we have heard before), or by scripting out what we want to say. Some autistic people use Augmentative and Alternative Communication (AAC) to communicate. For example, we may communicate by typing on a computer, spelling on a letter board, or pointing to pictures on an iPad. Some people may also communicate with behavior or the way we act. Not every autistic person can talk, but we all have important things to say.
  1. We socialize differently.Some of us might not understand or follow social rules that non-autistic people made up. We might be more direct than other people. Eye contact might make us uncomfortable. We might have a hard time controlling our body language or facial expressions, which can confuse non-autistic people or make it hard to socialize.

    Some of us might not be able to guess how people feel. This doesn’t mean we don’t care how people feel! We just need people to tell us how they feel so we don’t have to guess. Some autistic people are extra sensitive to other people’s feelings.

  1. We might need help with daily living.It can take a lot of energy to live in a society built for non-autistic people. We may not have the energy to do some things in our daily lives. Or, parts of being autistic can make doing those things too hard. We may need help with things like cooking, doing our jobs, or going out. We might be able to do things on our own sometimes, but need help other times. We might need to take more breaks so we can recover our energy.

Not every autistic person will relate to all of these things. There are lots of different ways to be autistic. That is okay!

Autism affects how we think, how we communicate, and how we interact with the world. Autistic people are different than non-autistic people, and that’s okay. ASAN advocates for a world where all autistic people have equal access, rights, and opportunities. Nothing About Us, Without Us!

(This is ASAN’s short definition of autism. If you want to know more, check out their book, Welcome To The Autistic Community!)