So, what is Autism?
|DEFINITION||Autism is a lifelong neurodevelopmental difference that is characterized by ranging ability in social interaction, communication|
skills, relationships, and self-regulation. It also affects how they make sense of the world around them.
|VIDEO RESOURCE||Amazing Things Happen|
|FURTHER READING||What is Autism|
Sources: The Autism Society; The National Autistic Society; Autistic Self Advocacy Network
Autism does not discriminate
ASD occurs in all racial, ethnic, and socioeconomic groups. In the United States, the most recent data shows little to no difference in prevalence rates between white and black children, but there are less reports for Hispanic children. Continued expansion of screening and intervention services can help close any still existing gaps of diagnosis rates. How autism is diagnosed and documented in different areas of the country can affect data collected as well.
Autism does not discriminate
- ASD occurs in all racial, ethnic, and socioeconomic groups.
- In the United States, the most recent data shows little to no difference in prevalence rates between white and black children, but there are less reports for Hispanic children.
- Continued expansion of screening and intervention services can help close any still existing gaps of diagnosis rates.
- How autism is diagnosed and documented in different areas of the country can affect data collected as well.
Sources: CDC and the Autism and Developmental Disabilities Monitoring (ADDM) Network
The current estimated prevalence of Autism is 1 in 54. These numbers are based off the number of kids diagnosed by the age of 8 from monitoring sites across the United States.
A person is born with autism and will be autistic their
whole life, but when they are diagnosed can widely vary!
- There is no single medical test, such as a scan or blood test, to show autism, rather developmental screenings and behavior patterns are assessed
- Earliest diagnosis can be made at 18 months (sometimes earlier) but the average age of diagnosis is between 2 – 4 years old
- All children should be assessed at 9-, 18-, and 24-month well-child visits for delays or behavioral differences – decreased access to medical care in lower income areas or for minority groups may help explain gaps in diagnostic rates
- Individuals who may diagnose autism: psychiatrist or psychologist, neurologist, or developmental pediatrician
- Older children and adolescents may get assessed when parents and/or teachers notice social difficulties
- Diagnosing adults can be harder due to overlapping symptoms from co-occuring conditions.
- Autism testing specifically for adults is still being researched and created
Signs of Autism
Autism affects everyone differently so signs will vary from person to person. This does not make one person more autistic than other. Watch this video explaining the DSM 5’s criteria for Autism:
Autism diagnosis criteria: explained (DSM-5)
- Different approach to social interactions
- Differences with empathy
- Expressing emotions differently
- May not initiate or respond to social cues
- May think for themselves rather
than following unwritten “social rules”
- May have difficulty combining verbal &
- Varying degrees of eye contact (none
to a lot)
- Difference in understanding others’
body language, gestures, & expressions
- Different uses of own body language,
tone, and facial expressions
- Expressing wants & needs in different
- Communicating in different ways than
- May have difficulty
- May have trouble adjusting
behaviors to meet different
- Not as interested in the
same things as peers
- Differences in thinking and
- Having special interests – can be
broad or specific and can last for
varying amounts of time
- Difficulty with executive
- Sensory processing differences
Autism in Infants & School-Age Kids
Autism is a Spectrum
Everyone on the spectrum is different and needs different support
“If you’ve met one person with
Autism, you’ve met one person
- Dr. Stephen Shore
Read the full comic here: Understanding the Spectrum
What Causes Autism?
There is no single known cause of autism. It’s important to remember that autism is a difference in the brain structure and can occur naturally just like hair and eye color. Research shows that there are both genetic and environmental factors that may increase the likelihood of having autism but the research is ongoing.
- Family history of or having a sibling with autism
- Some gene abnormalities have been linked with predisposition for an autism diagnosis
- Read more about genetics and autism here on Spectrum News
- Complications with pregnancy or birth
- Taking certain drugs during pregnancy
- Exposure to certain drugs or toxins either
- during pregnancy or at a young age
OTHER POSSIBLE FACTORS
- Older age of the father at conception
- Premature birth or low birth weight
Source: CAR Autism Roadmap, Autism Parenting
Autism & Gender Identity
Gender is a spectrum. Autism is a spectrum. More research needs to be done to explore gender identity in autistic individuals as well as traits of autism in genders other than males. For more info on resources for introducing topics of gender identity and sexual orientation to someone on the spectrum, watch this Spark for Autism webinar
- Males are diagnosed with autism 4x more likely than other genders.
- Symptoms of autism can be different in females, therefore
using the same diagnostic criteria may be inaccurate
- Research is being done to recognize and understand
autism in females to hopefully have better accuracy of
diagnosis amongst genders
TRANSGENDER & NON-BINARY
- A higher percentage of autistic individuals identify as
transgender or non-binary compared with “neurotypical” peers
- Screening tools need to be expanded to consider
Source: Spectrum News, National Autistic Society Spectrum News 2
Effective Treatments & Therapies
Autism is not an illness and there is no “cure”. There are, however, effective therapies and supports that help make the lives of autistic individuals easier. Please note this is not an all-inclusive list of treatment and herapy options
- Applied Behavioral Analysis (ABA)
- Verbal Behavioral Therapy
- Relationship Development Intervention (RDI)
- Cognitive Behavioral Therapy
- Developmental and Individual Differences Relationship (DIR) (also called Floortime)
- Occupational Therapy
- Physical Therapy
- Speech Therapy
- Augmentative and Alternative Communication/Assistive
- Feeding Therapy
- Recreational Therapy
TREATMENT OF CO-EXISTING CONDITIONS
Other medical conditions that can be associated with
Autism include, but are not limited to:
- Feeding Difficulties
- GI Issues
- Disrupted Sleep
- Bipolar Disorder
By treating symptoms of co-existing conditions, it can
make every day living easier for the person
Source: ADDItude Mag , Autism Science Foundation
Acceptance vs. Awareness
Awareness is knowing someone has a disability, Acceptance is inviting them to play or hang out
Awareness is seeing that someone with a disability can do something unexpected, Acceptance is believing they are just as capable of accomplishing hard tasks and goals and cheering them on along the way
Awareness is knowing someone may have challenges, Acceptance is seeking to understand their challenges
Awareness is telling a child their classmate/teammate/etc. has autism, Acceptance is explaining to the child what autism is and how they can be their friend
Awareness is assuming you can’t help if you don’t know much, Acceptance is simply asking “How can I help?”
Awareness focuses on how the disability/difference makes those without it feel , Acceptance centers around the perspectives, needs, etc. of individuals with the diagnosis or difference and celebrates them
Awareness does not guarantee any change but is better than nothing, Acceptance is taking action.
Identity First vs. Person First Language
Person First Language
What is it?
- Recognizing the person first when referring to them
- Was created by individuals with developmental disabilities that wanted to be seen for their abilities first
Why do we use it?
- Put the PERSON before the disability.
- Disability/Difference does not solely define them
Identity First Language
What is it?
- Referring to the person based on a trait they identify as that they cannot be separated from
- Often used by family members and individuals about themselves
Why do we use it?
- It’s a part of them that they are proud of
- Respecting the person for how they identify
As someone not on the spectrum, we can’t determine how people on the spectrum want to be referred to.
If you aren’t sure which language someone prefers, just ask!
Source: Beyond Binary, People with Disabilities, The Art of Autism
Neurodiversity & The Paradigm Shift
The wide variety of neurocognitive functioning of human minds, there are infinite variations of our brain
Possessing a brain and neurocognitive functioning that is accepted and considered “normal” in society
Possessing a brain that functions rather differently than what society accepts as “normal”. Neurodivergence can be innate (such as with autism or a learning disability) or can be created (such as through drug use or a traumatic injury)
4. PATHOLOGY PARADIGM
Referring to the mindset that assumes there is only one range of “right” human brain functioning and behavior and being outside of that range means something is wrong.
5. NEURODIVERSITY PARADIGM
Accepts that diversity of our minds is natural and that there is no “right” brain just as there is no “right” gender, race, sex, etc.; if there is no “right”, there is no “wrong” so all kinds of minds are good
We need to shift the perspective that autistic people need to be fixed.
To read more about the Pathology and Neurodiversity Paradigms, read these articles by Dr. Nick Walker:
- Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm
- Autism and the Pathology Paradigm
Source: Autistic Community & the Neurodiversity Movement , The Art of Autism
Myths vs. Facts
All people with Autism are the same
People with Autism can’t communicate
People with Autism can’t form relationships
Vaccines cause Autism
Everyone on earth is different in their own individual ways. Individuals with Autism may have some of the same characteristics as others, but that doesn’t always apply to everyone.
About 1/3 of all autistic people are nonspeaking but that does not mean they can’t communicate. Everyone communicates! You may just have to learn how to understand and communicate in a different way.
Autism does not prevent forming relationships, it may just change how they socialize or connect with others. Many people on the spectrum have fulfilling relationships with their families and friends.
Many research studies have been completed in regards to vaccinations and autism and no links have been proven. The vast majority of research shows that certain genetic and environmental factors are associated with higher risks for autism.
Source: The Art of Autism, Kennedy Krieger
Autism and the Senses
Many autistic individuals experience sensitivities in regards to the senses. When someone is hypersensitive, which is over reactive, they will sensory avoid and try to get away from what is causing the overstimulation. When someone is hyposensitive, which is under reactive, they will sensory seek and try to get more of the stimulation they are missing. Someone can be hypersensitive and hyposensitive to the same thing in different settings or be hypersensitive to one sense but hyposensitive to another. Everyone is different!
Hearing, listening, interpreting, filtering and focusing on auditory stimuli,
Some Sensitivity Symptoms:
- avoiding loud & sudden noises
- distracted by background noise
- has to listen to music at certain volume
Smelling – good smells are something we may be more interested in, bad smells are
something we avoid
Some Sensitivity Symptoms:
- avoid strong scents
- limited diet – smell of certain foods causes avoidance
- exploring surroundings by smell
Taste and the oral sensory system – closely associated with the olfactory system
Some Sensitivity Symptoms:
- sensitive to brushing teeth
- sensitive to food textures
- exploring surroundings orally (ex. chewing nonfood items)
Using eyes to see far and close, scanning & assessing your environment
Some Sensitivity Symptoms:
- sensitivity to various lights
- difficulty tracking while reading
- poor hand-eye coordination
- distracted by overstimulating decorations
Touching and feeling – including pressure, pain, temperature, and texture
Some Sensitivity Symptoms:
- seek or avoid different textures
- difficulty with certain clothes (ex. tags & socks)
- needs to touch everything
- sensitive to physical touch
An internal system made of muscles, joints, and tendons that helps you know where you are and what you
are doing. This system is responsible for coordination and motor planning.
Some Sensitivity Symptoms:
- poor coordination
- difficulty gauging pressure
- a lack of awareness of body position in space
- difficulty with fine motor skills
System within the inner ear that detects movement and changes in the position of the head. This helps you balance and is an internal GPS
Some Sensitivity Symptoms:
- does not like feet off the ground
- seeks spinning and swinging
- difficulty standing still
- difficulty with heights
Source: Autism Tasmania, Growing Hands-on Kids, Autism Research Institute
Sensory Overload Simulations
Being overstimulated can caused autistic individuals to go into crisis mode. Check out these sensory simulations to get a better idea of what they may experience when overstimulated.
- Sensory Overload (Interacting with Autism Project)
- Autism: Sensory Overload Simulation
- Autism Awareness Month – Autism Simulator | Operation Ouch | Science for Kids
- The Party: a virtual experience of autism – 360 film
Source: YouTube & Vimeo
- “Stimming” or self-stimulating behavior are repetitive movements that help an individual self-regulate their sensory system
- Stims can be positive repetitive behaviors and/or negative repetitive behaviors.
- You should only redirect inappropriate or negative stims, such as head banging and biting themselves. Redirecting the stim helps the individual seek a safer option to meet their sensory needs
- Forcing someone to stop stimming leaves their system unregulated and can lead to escalated or worsened mood and behavior
- There are MANY different stims, but some common ones include:
- hand flapping
- repetition of vocal sounds
- watching the same clip from a video/show on repeat
- an oral stim such as chewing
- Video Examples:
- Fathering Autism – Real Autistic Stimming
- Ambitious for Autism – Young people explain stimming
Source: Child Mind Institute , Car Autism Roadmap, Autism Parent Magazine
Tantrums vs. Meltdowns
When needs aren’t met or can’t be communicated properly this can cause anxiety or for the individual to become unregulated. They may try to regulate themselves by shutting down or the overstimulation may escalate into a meltdown. It is very important to note that a meltdown is different from a tantrum! Knowing the differences can lead you to respond in a helpful way.
- Tantrums are caused by an outburst of anger or trying to get something they want or need
- Tantrums are “goal-oriented” and need an audience to be effective
- Children grow out of tantrums as they get older
- Can be redirected with distraction, incentives, or possibly discipline
- Looks Like: Yelling, crying, being combative
- but is able to redirect at a certain point
- A stimuli has become too much to handle so the individual has withdrawn into their internal world – in this state, no learning is taking place – they are oblivious to danger and risk falling into a meltdown
- May be in continuous state of overload; stuck in shutdown. Any stimuli can trigger major meltdowns.
- It is possible to try to intervene and redirect at this point – Provide a safe space, remove excess stimuli, offer soothing items
- Meltdowns are caused from being too overwhelmed, similar to an anxiety or panic attack
- No audience is necessary
- Can’t be redirected by normal measures to reduce
- behaviors – montior and keep them safe
- You need to let it run its course, intervening can restart the cycle
- Looks like: same external behaviors as a “tantrum,” but not for the same reasons
Ways to Communicate (more than just speaking!)
This includes volume, tone, and words. Individuals with autism do not always learn verbal skills the same way neurotypical individuals do because the brain is wired differently in this area. BUT – this doesn’t mean that these individuals don’t understand when YOU speak.
Less than 20% of what we communicate is said with words. The rest is non-verbal communication. This includes body language, facial expressions, body movements, & eye contact. Someone with Autism may communicate differently – the may have a flat affect, little to no eye contact, or do not move their bodies during social interaction OR they may over-do certain gestures, expressions, etc. to compensate for their lack of body language.
Behavior is another form of non-verbal communication. Negative behaviors may be used simply because it works or because they don’t know what else to do
is the preferred term for individuals who do not communicate verbally
ALTERNATIVE FORMS OF COMMUNICATION
- Sign Language
- Picture Exchange Communication System (PECS)
- Speech Generating Device – ex. Go Talk,
- iPad, Dynavox Maestro
- Nonverbal communication such as eye gaze, facial expression, and gestures
OTHER TIPS FOR EFFECTIVE COMMUNICATING
- Provide visual input (using picture cards, gestures, etc.) – visuals are processed much
- faster than auditory input and can elicit quicker responses
- Provide extra processing time
- Use specific and clear language – may take what you say very literally or not catch a joke
- Avoid idioms or sarcasm unless you explain the concepts
- Give one step at a time
Source: Raising Children, VCU Autism Center for Excellence
Echolalia & Scripting
Some individuals with autism will repeat words or phrases they’ve heard previously. This is referred to as “echolalia,” or “scripting.” They learn these phrases through daily life, movies, tv shows, songs, etc. There are 2 types and they can be functional or nonfunctional:
- Functional Scripts are the repeating of words of phrases in context with the conversation when the person may not be able to come up with their own words for a response; scripts are functional when they align with what the speaker is trying to convey
- Nonfunctional Scripts can be thought of more as a verbal stim, they are said out of context of any conversation, and may be repeated to soothe the person; a script may become nonfunctional when it’s said out of context and doesn’t match what the speaker is trying to convey
- Immediate echolalia: this form is the repetition of a question of phrase that was just heard
- Example: Asking “Would you like some juice?” and hearing “some juice?” in response to the question
- immediate echolalia may be used to give themselves extra time to process what is being said to formulate a response
- Delayed echolalia: this form is the use of a phrase/words repeated some time after initially hearing it
- Example: Arriving at the grocery store and repeating the grocery list your favorite cartoon character says or repeating a social script of how to respond to common questions like “How are you?”
Different scripts may be used for different moods and requests. You have to get to know the person and how the communicate to understand what they are trying to let you know.
Check out this episode of “Ask an Autistic” for more on scripting: What is scripting?
Source: Autism Parenting Magazine , Musings of an Aspie
Ideas to Support and Interact with Someone on the Spectrum
- Build a rapport and learn their strengths and interests
- Offer visual aides (schedules, timers, cue if they are too close/volume check/etc.)
- Be patient in conversation – provide time for response and be prepared with conversation topics to help with back and forth
- Engage in games and activities that work on social skills like joint attention, play skills, and social rules
- Provide specific and positive praise for attempting and completing tasks
- Do NOT demand eye contact if it’s not necessary – this can be painful
- Teach important “social rules” such as restroom rules but also accept any social differences like not wanting to shake hands or greeting someone with a line from their favorite movie
- Role play how to respond to social scenarios or use social narratives to explain new concepts or changes in routine
- Maintain a similar day-to-day routine, display the schedule, and notify as soon as possible when changes are to be expected
- Let them stim! Also proactively ensure they are able to meet their sensory needs
- Only intervene when a behavior becomes unsafe and determine what led to the behavior to see what is trying to be communicated so you can address it
Source: Milestones, Autism NOVA, Augusta Health
Introducing Autism to Kids
- Sesame Street’s We’re Amazing, 1,2, 3!
- It’s Okay to Be Different by Todd Parr
- All My Stripes by Shaina Rudolph
- Uniquely Wired: A Story About Autism and Its Gifts by Julia Cook
- Red: A Crayon’s Story by Michael Hall
- Julia from Sesame Street
- Max from Daniel Tiger’s Neighborhood
- Carl from Arthur
- AJ Gadgets from Hero Elementary
- Mack & Moxy Sing-along: A Spectrum of Possibilities
- If a friend eats the same thing thing for lunch every day that doesn’t mean they’re boring
- A classmate may struggle with switching classes because of the change
- Someone who does not talk is not dumb and can still be talked to
- If someone is doing a repetitive motion or making noises, it’s not something to make fun of
- A peer may take a toy but not do it to mean, be patient and help teach sharing
Check out the Organization for Autism Research’s Kit for Kids for teaching elementary and middle
school kids about their peers with autism
Source: Sesame Street PBS Kids, Teachers Pay Teachers , Fred Rogers Productions , Family Education
Autism in the Workplace
- There are an estimated 5.4 million autistic adults in the United States
- 35% of autistic learners go to college, but only 15% with diplomas end up with jobs
- The unemployment rate for autism is a staggering 85% compared to the general popoulation’s
- 4.5% and individuals with other developmental disabilities unemplyment at 21%
- Unemployment rates account for the number individuals ready to work and seeking work
- Employers need to be educated on the strengths that workers on the spectrum can bring to the
- Autistic workers need to be properly trained and supported to do the work
- An employee on the spectrum is not required to disclose their diagnosis
- Finding the best job “match” is important and understanding changes might need to be made to help facilitate an employee’s success
- Employees can request an accommodation at any time in their employment – from hiring to training, workplace activities and events, etc.
- The purpose of an accommodation in the work environment is to help assist qualified individuals apply for a job, perform the job duties and
- enjoy the benefits and privileges of employment like anyone else
- Common Workplace Accommodations may include:
- Modifying work schedule and informing of changes to schedule
- Physical changes to the workspace, equipment, or devices to support sensory sensititivties or learning differences
- Job coaching
- Written instructions or task lists
- Using a recorder for conversations/meetings to refer back to
- Visual supports (examples of completed work, pictures of how something is organized, etc.)
Source: Autism Research Institute , Car Autism Roadmap, Thinking Autism Guide, Life Course Outcomes Research Program
Being an Ally
An ally is someone who supports a group that is not a member of that group. In this case, to be an Autism Ally you are supporting those on the spectrum and do not have an autism diagnosis yourself. Check out these videos and resources on tips for being the best ally you can be.
- Ask an Autistic – How to Be an Ally
- UVA STAR – Autism and Allyship: How to Take Action
- Neurodivergent Rebel & Paul Austin (IBM) – How Can I Be a Better Ally to Autistic People?
- Hunter Hansen The Life Autistic – Autistic Coworkers? | What you Need to Know about Us!
- Checklist of Neurotypical Privilege: New Draft
- Autism Acceptance – Chapter 9
- Autistic Self Advocacy Network –What is an ally?
- Autistic Mama – 3 Simple Ways to Be an Autism Ally This April (And Year-Round)
Self-advocacy is standing up for yourself and taking part in the decisions that affect you. Many times, others may try to plan and decide things for an autistic person. Today’s topic is meant to teach you that decisions about someone should include that person! Self-advocacy can be small like deciding you don’t want to do something or big like having some or total say in your education, living, or work decisions.
Self-advocacy skills should be taught and are just as important as learning social skills. Here are some examples:
- Teach about how to self-advocate for their needs in the classroom
- Teach about how and when to disclose their diagnosis
LAWS & RIGHTS
- Educate on the ADA and other important disability laws
- Practice scripts for expressing their rights in a variety of settings
- Explain why they sometimes feel over and under stimulated by their different senses
- Teach how they can request environmental accommodations
Source: Autism Society , ASAN, Autism Acceptance
They Have Autism?
Inventor of Pokemon
- Diagnosed with Autism as a child.
- His intense interest in bug collecting as a child led to his creation of Pokemon.
- He sees his Autism as an enhancement for learning.
Animal Scientist & Author
- Diagnosed with Autism at age 3.
- She has a doctorate in animal sciences.
- She was inducted into the Women’s Hall of Fame in 2017.
- HBO made a movie about her life.
- Diagnosed with Autism as an adult.
- As a child, he was fascinated with ghosts & law enforcement. This led to the creation of Ghostbusters.
- Dan views his autism as a strength & says it helped him in his career.
- Diagnosed with Autism at age 18.
- He struggles socially, but states that he
feels most at home in the water. He is
known as one of the world’s top sufers.
- There is a documentary on his life. It
is called “Clay Marzo: Just Add
Source: Teach Me About Autism
Books by Autistic Authors
Trying to learn more about the autistic perspective? Seek books written by autistic authors
Some Additional Resources
- Autism Society
- The Color of Autism Foundation
- Autistic Women & Nonbinary Network (AWN)
- Autism Self Advocacy Network (ASAN)
- Welcome to the Autistic Community by ASAN
- CDC’s Autism Resource List
- VCU Autism Center for Excellence
- UVA’s Autism Drive Research Collective
- Virginia Department of Education ASD Resources
- National Autism Association
- National Autism Center
- CAR Autism Roadmap
- Learn From Autistics