Intro to Autism

Glossary of frequently used terms

ASD

• Stands for “Autism Spectrum Disorder”

Allistic / Autistic (from Embrace-Autism.org)

• Allistic: refers to non-autistic people
• Autistic: refers to folks who have Autism Spectrum Disorder

Autistic inertia (from AutisticInertia.com)

• Refers to inertia regarding an autistic person’s attention, thinking, or movement. Autistic folks tend to stay on one task (or no task at all) unless stopped (or started) by a major outside force or tremendous act of will. It applies both to getting started on a task as well as stopping once engaged in something (see more below).

Autistic meltdown / Autistic shutdown / Autistic burnout

• Autistic meltdowns are caused by nervous system overwhelm and overload and are analogous to the fight response. They are characterized by yelling, self-harm, aggression, and repetitive behaviors (see more below).
• Autistic shutdowns are caused by overwhelm and overload and are analogous to the freeze response. They are characterized by withdrawal and sometimes difficulty speaking (see more below).
• Autistic burnout is a syndrome resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus (see more below).

DSM (from Wikipedia.org)

• Stands for “Diagnostic and Statistical Manual of Mental Disorders”
• A publication by the American Psychiatric Association (APA) for the classification of mental disorders using a common language and standard criteria. It is the main tool for the diagnosis and treatment of mental disorders in the United States.  The DSM is problematic for a number of reasons (see more below).

Masking

• Describes strategies used by an autistic person to hide their autistic traits or portray a non-autistic persona (see more below).

Neurotypical / Neurodivergent (from Embrace-Autism.org)

• Neurotypical: Refers to people who are neurologically typical, i.e. without a defined neurological difference, with typical neurology/development.
• Neurodivergent: An umbrella term inclusive of people with diverse mental and behavioral differences/disorders. Refers to individuals with mood disorders, anxiety disorders, dissociative disorders, psychotic disorders, personality disorders, neurodevelopmental disorders, and eating disorders.

Stimming (or stims) (from Embrace-Autism.com)

Stimming is when someone moves repetitively, such as with hand-flapping, tapping, dancing, humming, etc. as a way of self-stimulating and regulating.

What is going on in the autistic brain?

Oh so much. Research has shown that autistic brains produce 42% more information at rest compared with allistic brains

There are several areas of difference between autistic children’s brains and allistic children’s brains. I’m not going to get into the details here because a) there’s a lot of information, b) I don’t understand most of it, and c) I really don’t care.  However, a summary of the points I found noteworthy (and could understand) are as follows (from Embrace-Autism.com):

Brain connectivity

• Certain brain regions of autistic brains show hyperconnectivity while others show lower connectivity relative to neurotypical brains.

Enlarged heads

This is more prevalent in autistic folks, but a larger head is not a universal attribute of autism, nor is it exclusive to autism. One cannot diagnose autism based on head size.

Enlarged brains in first year

• Brain size in autism was slightly reduced at birth.
• Brain size in autism dramatically increased within the first year of life.
• Brain size in autism later plateaus, so that by adulthood the majority of cases are within the normal range.

Cerebrum differences

• Structural brain differences are found in brain areas implicated in social cognition, communication, and repetitive behaviors.

Cerebellum differences

• Research on the VTA (Ventral Tegmental Area) in autism implicates it in a lesser social reward, which in turn diminishes sociability.

What is required to get an autism diagnosis?

From the DSM-5 (see more below):  a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below):

1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by all three of the following:
   1. Deficits in social-emotional reciprocity
   2. Deficits in nonverbal communicative behaviors used for social interaction
   3. Deficits in developing, maintaining, and understanding relationships
2. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
   1. Stereotyped or repetitive speech, motor movements, or use of objects
   2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change
   3. Highly restricted, fixated interests that are abnormal in intensity or focus
   4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
4. Symptoms together limit and impair everyday functioning
5. 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.

What is the DSM and what are its shortcomings?

The DSM (Diagnostic and Statistical Manual of Mental Disorders) is published by the American Psychiatric Association (APA) for the classification of mental disorders using a common language and standard criteria. It is the main tool  for the diagnosis and treatment of mental disorders in the United States (from Wikipedia.org).  The current version is the DSM-5.

The DSM is problematic for a variety of reasons including (from BorderlinePersonalityDisorder.org):

• It cannot predict what treatments will benefit patients most — a reality tied to the fact that psychiatric diagnoses are based on clinical appearances that tend to cluster, not on the mechanism behind the illness.
• Insurance companies cover services only if there is a diagnosis. Yet, the suffering of a patient who doesn’t have the symptoms required to qualify for a diagnosis is no less real and no less worthy of professional attention.
• Disability benefits and accommodations require a diagnosis, and are therefore withheld from those who don’t have access to a diagnosis and/or those who do not meet the diagnostic criteria.
• It reflects what society demes “abnormal” rather than objective laboratory measures (from psmag.com).

In short, the DSM exists to serve insurance companies and government agencies (like the VA and SSA) rather than patients, and serves as a gatekeeper that determines who is “worthy” and “unworthy” of support.

What are the statistics for autism?

(From CDC.gov)

How prevalent is autism?

• Based on research from 2016, the CDC reports that 1 in 44 children in the US is autistic.
• Autism is reported in all racial, ethnic, and socioeconomic groups.

Yeah, but in 2000, the rate of autism was 1 in 150.  What gives?

• As more effective diagnostic tools are developed AND additional research is done into how autism presents in different genders, ages, races, etc., more people are diagnosed, thereby increasing the rate of autism reported.
• The difference might also be attributable to changes in the DSM (between version 4 and version 5), including:
  • Overall diagnostic criteria
  • Incorporation of Asperger’s into the newly renamed ASD diagnosis

Why are so few women and femme-presenting folks diagnosed with autism?

(From Embrace-Autism.com: Sex ratio, Why female autism is questioned, Autistic traits in women)

Historically and even today, males have been diagnosed with autism more frequently than females. The first studies in autism even featured almost exclusively boys.  The male:female ratio for autism has long been estimated to be 4:1.  However, the diagnostic criteria were developed primarily based on autistic males. As our understanding of autism increases and autism in women is studied more, the hope is—and the goal should be—that the diagnostic criteria will be refined so autistic women will be identified more readily.  Some researchers suggest that when autism in women and girls is diagnosed effectively, the sex ratio will change to 2:1.

What accounts for the different occurrence rates of autism in men and women?  Some reasons include:

• Women and girls require higher genetic and symptomatic burden to be diagnosed.
• Relatives of affected women and girls are more likely to also have autism (and therefore think the behavior is “normal”).
• Genes that have been implicated in ASD are over-represented in male brains.
• Genes that have been implicated in ASD are linked to the Y chromosome.

Not only are fewer girls diagnosed with autism, but they are diagnosed later than males on average.  Why?  Some reasons include:

• Camouflaging: Many women have camouflaged (i.e. hidden) their autistic traits to appear neurotypical and have managed well in life and their careers. Nevertheless, there tends to be a breaking point or circumstances that urge us to seek a diagnosis.
• Stereotypes: Young women felt that “Rain Man” stereotypes – which incorrectly assume that autism is always associated with savant skills and with interest in mathematics and science –delayed their diagnoses.
• Health professionals: Many healthcare providers are not aware of how autism presents differently in women and girls.
• Co-occurring conditions: Co-occurring conditions (see below) can lead to an underdiagnosis in women and girls.
• Misdiagnosis: Autistic women are more likely to be diagnosed with Multiple Personality Disorder, Bipolar Disorder, Obsessive Compulsive Disorder, or Borderline Personality Disorder rather than autism (from Embrace-Autism.com).

Why is it so hard to get a diagnosis as an adult?

There are several reasons why getting an autism diagnosis as an adult is challenging, including: (from HelpAndHealingCenter.com):

The DSM

• The DSM’s diagnostic criteria for autism is based on assessing CHILDREN. There’s no established procedure for diagnosing autism in adults.

Psychiatrists

• Many psychiatrists do not get the training on more complex or subtle presentations of autism and simply do not address it.
• Some providers focus only on what they can see and miss the opportunity to ask about the internal experience that individuals have, such as social discomfort or attempts to mask and minimize symptoms.
• Some providers feel that if adults with autism are able to manage their symptoms, they do not need a diagnosis.

Masking

• Adults who are wondering about an autism diagnosis and seeking an evaluation for the first time have often learned many “tricks” to get by socially (i.e. masking or camouflaging) to the point where many of the “autistic” symptoms are less visible or obvious (see more below).

What is autistic masking?

(From Healthline.com)

Masking is a social survival strategy by which an autistic person changes or conceals their autism for a variety of reasons including:

• Feeling safe and avoiding stigma
• Avoiding mistreatment or bullying
• Succeeding at work
• Attracting a romantic partner
• Making friends and other social connections
• Fitting in or feeling a sense of belonging

Masking includes behaviors like:

• Forcing or faking eye contact during conversations
• Imitating smiles and other facial expressions
• Mimicking gestures
• Hiding or minimizing personal interests
• Developing a repertoire of rehearsed responses to questions
• Scripting conversations
• Pushing through intense sensory discomfort including loud noises
• Disguising stimming behaviors (hiding a jiggling foot or trading a preferred movement for one that’s less obvious)

Masking may be common in places where there’s little support for neurodiverse people, or where people on the autism spectrum are under direct threat. But while masking may have certain benefits, it’s important to note that there are significant costs.  Time spent learning neurotypical behaviors is time not invested in other kinds of personal development.  Additionally, the effort used to copy neurotypical interactions can quickly lead to social overload.  Here are some of the effects of regular masking:

• Stress and anxiety
• Depression
• Exhaustion
• Delayed identification of autism
• Loss of identity
• Risk of autistic burnout
• Increased risk of suicidal thoughts

What conditions co-occur with autism?

As I said above, it’s important to know that if you’ve met one person with autism, you’ve met… exactly ONE person with autism. As the name implies, ASD is a spectrum, and as such, it manifests differently for every single person who has it.

This is partially due to the ways in which co-occurring conditions combine with autism, resulting in a completely different flavor of autism.

Some common co-occurring conditions include:

Condition	Notes
ADD/ADHD	Attention Deficit Disorder / Attention Deficit & Hyperactivity Disorder Autistic prevalence: > 50%
Giftedness	NOT synonymous with Savant Syndrome Neurotypical prevalence: 1% Autistic prevalence: 0.7-2%
Savant Syndrome	Neurotypical prevalence: < 1% Autistic prevalence: 10-28.5%
Hypermobility	Hypermobile connective tissue resulting in bruising, hyperextension of joints, etc.
Alexithymia	Difficulty identifying & expressing emotions Autistic prevalence: 40-65%
Autoimmune disorders
POTS	Postural Orthostatic Tachycardia Syndrome
FND	Functional Neurologic Disorders
Fibromyalgia
CFS	Chronic Fatigue Syndrome

Table 1a.  Common conditions that co-occur with autism.  See which ones I have here.

Additionally, having autism makes one more susceptible to a variety of conditions/experiences, some of which include:

Condition/experience	Notes
Sleep disorders	Neurotypical prevalence: 50% Autistic prevalence: 73%
PTSD	Autistic prevalence: 40-60%
Addiction	Autistic folks are 2x as likely to develop addiction compared to neurotypical folks
Sexual assault	9 out of 10 autistic women and femme-presenting people report experiencing sexual violence

Table 2a.  Common conditions and/or experiences to which autistic folks are more susceptible.  See which ones I have here.

Is autism a disability?

Yes, both from a legal and medical perspective, though not necessarily from a social perspective (from Healthline).

Legally

The Americans With Disabilities Act (ADA) includes autism, so from a legal standpoint, autism is a disability.

Medically

The CDC defines a disability as “any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them.”  Autism is a neurodevelopmental condition that impacts a person’s ability to navigate neurotypical norms, and therefore, from a medical standpoint, autism is a disability.

Socially

When it comes to self-identification, not everyone who is autistic considers themselves disabled.  This may depend on several factors including:

• Level of support needed
• Environment
• Changing social perspectives

Also, consider two different models of disability (from @claudiaalicklove):

1. The medical model of disability suggests that if you’re finding something inaccessible, that’s a YOU problem. You must engage with the medical-industrial complex to get an official label and diagnosis, or you are not allowed access to resources that would make things accessible to you.
2. The social model of disability recognizes that if you’re finding something inaccessible, that’s a problem with your ENVIRONMENT.  Choices made by your society (how public spaces are designed, how information is delivered, etc.) are what makes them inaccessible to you.

What are “accommodations”?

Typically, accommodations refer to the workplace or schools, and are any change to processes, procedures, or environments that allows a (qualified) person with a disability to perform the essential functions of that job or school assignment.  General examples include:  reserved parking, ramps, changes in the presentation of tests and training materials, provision or adjustment of a product, equipment, or software, allowing a flexible work schedule, etc. (from adata.org).

Examples of accommodations that are helpful for folks with autism include: lower or different-hued lighting, noise canceling headphones, scent-free products, access to individual offices (rather than open floor plan), written schedules, advanced notice of changes to schedules, etc.

What should I do when someone discloses they have autism (or any disability) to me?

(from Nicki Rios)

If someone discloses autism (or any other disability) to you, understand that disclosure is either a result of immense trust or an urgent access need.  Thank them for trusting you enough to disclose to you, and reassure them that you will keep that information to yourself to respect their privacy, unless they state otherwise.

If the person disclosing to you has an accommodation need you can meet, do so.  If you’re not in a position to facilitate accommodations, you can simply ask “Is there anything I can do to make your life easier?” Be open to whatever they might request by being open, supportive, and willing to make adjustments. If they’re not sure what accommodations they may need, reassure them that they can discover that and request it at any time.  Be accepting of them as a person and their disability. Be open to how disability affects them if they wish to share that with you.

Always assume competence.  The person disclosing knows how their disability(ies) affects them more than anyone else, so don’t make assumptions about what someone can or can’t do now that you know they have a disability.  Continue to include that person in regular activities, unless that is something they specifically asked to change.  Give them autonomy to make their own choices rather than choosing for them. Again, assume competence.

These are some things you can do to make yourself a safe person for others to disclose to:

• When people disclose to you, meet them with full support (accommodations, inclusion, acceptance)
• Create an open, supportive environment by destigmatizing disability and mental health
• Accept a self-diagnosis of autism as valid (because it is)
• Be open and understanding of other people and different ways of being and doing
• Assume competence
• Adjust language (no ableist slang or expressions)
• Intercede on behalf of the disabled person when you notice harm being done
• Find strengths and utilize those rather than focusing on what you perceive to be a weakness and forcing them to improve on them
• Learn about different types of disabilities. Be curious. Research on your own. Learn from people with those disabilities.
• Listen to the experiences and perspectives of people with disabilities
• Allow flexibility in scheduling
• Understand that you may have privilege others may not

What are autistic meltdowns / autistic shutdowns / autistic burnout?

When situations are highly stimulating or create high levels of anxiety which feel like they can’t be escaped, the autistic person’s response is either flight, fight, or freeze. If the person cannot flee, that leaves two options: either fight or freeze (from AmbitiousAboutAutism.org.uk).

Autistic meltdowns

Autistic meltdowns are similar to the fight response.

When an autistic person is having a meltdown they often have increased levels of anxiety and distress which are often interpreted as frustration, a ‘tantrum’ or an aggressive panic attack. It may include yelling, harming ourselves, being aggressive, and repeating behaviors or words over and over.

Autistic meltdowns are distinct from tantrums in that (from @purpleellaandcoco):

• Tantrums are ineffective communication around a need. When that need is met, the tantrum stops. During a tantrum, the person CAN control their behavior.
• Autistic meltdowns are a neurological reaction to extreme overwhelm and overload. It will appear to have been caused by a “catalyst” but this apparent “catalyst” is not in fact the true cause of the meltdown.  An autistic meltdown will not end when that “catalyst” is addressed – in fact, the catalyst is irrelevant.  During a meltdown, the person CANNOT control their behavior.

Autistic shutdowns

Autistic shutdowns are similar to the freeze response.

Autistic shutdowns are often the result of situations with high demand in one or a few of the following areas:

• Social situations
• Situations that require a lot of thinking
• Lack of sleep
• Very emotional situations
• Situations that are very active or physical

In a shutdown an autistic person might not seem themselves because they’re so overwhelmed that their focus has shifted to their basic functions. They may struggle to communicate as they normally do, which can mean they are experience verbal shutdowns or have a lot of difficulty forming coherent sentences.

Autistic burnout

(From Autism.org.uk)

Autistic burnout is a syndrome resulting from chronic life stress and a mismatch of expectations and abilities without adequate support.  It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.

Causes

• Masking autistic traits (i.e. suppressing, pretending, camouflaging, acting).
• Difficult or unreachable expectations from family, school, work, or society
• Stress from living in a world not set up to accommodate autistic people (i.e. sensory overload, inaccessibility).
• Life-changes and transitions that are stressful for anyone (i.e. transitioning from school to work, experiencing a mental health crisis, the death of someone close).

Barriers to getting support or relief from stress

• Gaslighting or dismissal when attempting to describe the autistic burnout, for example being told that everyone has these experiences, that they just need to try harder, or that they are making it up.
• Poor boundaries or self-advocacy with respect to saying no, taking a break, or asking for help. This may be due to trauma, fear, lack of assistance in learning how, and a history of negative responses from others when they tried.
• Inability to take a break from stress that is so pervasive (“How do you take a break from life?”).
• Insufficient external resources and supports (ex/ inadequate disability services, lack of useful social support).

What is autistic inertia?

(From AutisticInertia.com)

In physics, inertia is stated as:

• An object in motion tends to stay in motion unless stopped or changed by an external force, and
• An object at rest tends to stay at rest unless changed (moved) by an external force.

In autism, autistic inertia refers to a person’s attention, thinking, or movement. Autistic people tend to stay on one task (or no task at all) unless stopped (or started) by a major outside force or tremendous act of will. It applies both to getting started on a task or focus as well as stopping once engaged in something.

What is the Double Empathy Problem

(from SpectrumNews.org)

Simply put, autistic people can readily communicate with other autistic people; non-autistic people can readily communicate with other non-autistic people.  The problem arises in communication BETWEEN autistic and non-autistic folks.

Difficulty navigating social interactions pervades even the earliest accounts of autism.  But the ‘double empathy problem’ suggests that communication breakdowns between autistic and non-autistic people are a two-way issue, caused by both parties’ difficulties in understanding the other party.  It posits that autistic people simply have a different way of communicating rather than a deficient one.

What does “going non-verbal” mean for autistic folks?

Like autism itself, autistic folks’ ability to speak exists on a spectrum.

• Some autistic folks are completely non-verbal (i.e. they never speak).
• Some autistic folks are always verbal (i.e. they never experience times when they can’t speak).
• Some autistic folks experience verbal shutdowns (i.e. they experience periods when they either physically can’t speak or when speaking is incredibly exhausting).

Folks who experience verbal shutdowns are sometimes able to speak well, and other times find verbal speech difficult or impossible. Speech abilities may depend on stress, cognitive workload, environmental factors, and simply whether it is a good day today.  If someone who is normally verbal loses their speech abilities, it may be a sign of autistic burnout (from Autism-Advocacy.fandom.com).  It may also be the result of nervous-system overwhelm.

Here are some first-hand experiences of autistic folks who are experience times when they experience verbal shutdowns:

• Paula Durbin-Westby (part 1 and part 2)
• Danny Jackson H