ABOUT
Autism Spectrum Disorder (ASD) is a complex lifelong developmental disorder that affects how people experience and interact with the world around them. There is no single underlying cause for autism, but it is linked to a combination of environmental factors and genetics. Autism changes how one's brain works, but it does not change the fact that people with autism are just as deserving of love, respect, and opportunities as neurotypical people (individuals of typical developmental, intellectual, and cognitive abilities). By looking at autism through the lenses of biology, sociology and history, we find that kindness, flexibility, modifications, and acceptance is the best approach to understanding and benefiting those on the spectrum.
So what really is autism?
Lets take a look at the main symptoms. Someone with ASD could experience anywhere from two to twelve of these symptoms with varying severities.
Social
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Avoids eye contact
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Has a hard time understanding non-verbal communication (body language)
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Lack of social awareness
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Lack of or exaggerated facial expressions
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Enjoy unusual or repetitive play, like lining up toys, stacking objects or completing the same puzzle over and over
Sensory
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Over-sensitive or under-sensitive to certain stimuli
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Reactive to loud or unpleasant noises
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Dislikes certain textures or touch from other people
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Sensitive to light
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Will only eat foods with a specific texture or taste
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Hypersensitive or undersensitive to pain
Behavior
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Restricted, repetitive behaviors or rituals
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Have difficulty adjusting to changes in routine
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Lacks fear or awareness of danger
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Short attention span
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Have narrow, intense interests
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Develop repetitive motions such as spinning or hand flapping
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Difficulty moderating emotions
Communication
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Delayed speech
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Nonverbal (doesn’t speak)
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Uses odd inflection
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Tone may be too loud or too quiet
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Have difficulty communicating nonverbally, such as through hand gestures, eye contact, and facial expressions
How is ASD Diagnosed?
An ASD diagnosis can be very complicated. There is no "yes or no" lab test to diagnose autism, the symptoms are varied from person to person, and many parents don't want the label of autism on their child. ASD can be detected by pediatricians and other doctors anywhere from 18 months to late adulthood. Family members monitoring a child's development will often notice missed milestones like smiling or paying attention to faces, which can lead to the pediatrician's office, where the doctor will evaluate behavior using their expertise and the DSM-5's diagnostic criteria. A diagnosis in childhood don't always happen though, and studies show that a lot more people have reached adulthood without being diagnosed than what was previously thought. Children with autism who were never diagnosed often grow up knowing there is something different about themselves, and end up figuring out their diagnosis themselves or taking themselves to a psychologist. Actor Sir Anthony Hopkins wasn't diagnosed until age 70! Early diagnosis are important so that intervention strategies can be implemented earlier and be more effective.
Terms to know
DSM
Diagnostic and Statistical Manual– A widely-used manual published by the American Psychiatric Association. It describes mental disorders with the diagnostic criteria and the systematic descriptions. A revised version is published periodically, and so far the most current manual is the 2013 DSM-V. Click below to see the DSM-V diagnostic criteria for ASD.
Asperger Syndrome
A diagnostic label that was previously described a person with ASD who was considered higher-functioning, meaning they did not have language delays or intellectual disability. The DSM-V folded all subcategories of autism including Aspergers into the diagnosis of Autism Spectrum Disorder. Click below to read more about Asperger Syndrome.
Spectrum
Autism is called a spectrum disorder because there is a wide range of the types and severity of symptoms that people with autism experience. The autism spectrum is usually thought of as a linear scale from high-functioning to low-functioning, but it is more nuanced in reality. Click below to see a more representative graphic and read about the autism spectrum.
Stimming
Stimming, or self-stimulation, is repetitive sensory action such as spinning objects, rocking, rubbing hands, or making sounds. People with autism commonly use stimming activities to alleviate the stress that comes with sensory overstimulation because the repetitive actions can be calming or distracting.
Neurodivergent
This term refers to people with a brain that functions in a different way from what society generally perceives as “normal.” It is most often used to describe autistic people, but can also describe those with ADHD and other disorders. Click below to read more about what it means to be neurodivergent or the opposite, which is called neurotypical.
Sensory Processing Disorder
Sensory processing disorder affects how the brain perceives sensory information. People can be oversensitive or under sensitive to stimuli like sounds, smells, textures, light, etc. This can lead to people avoiding unpleasant sensations while seeking out calming stimuli such as pressure or soft fabrics.
Nonverbal
An estimated 1/3 of people with autism are considered nonverbal, meaning they can't use spoken language effectively to communicate more than a few words. Some nonverbal autistic people can speak a few words, some are entirely mute, and some prefer other mean of communication such as sign language.
Perseveration
Perserveration is the fixated repetition of a particular behavior such as a gesture or phrase. It is common in people with autism, especially children. Repetitive behaviors can be things like lining up toys, organizing markers, spinning objects, having repetitive thoughts, and saying the same thing over and over.
Echolalia/Scripting
Echolalia is the route repetition of a word or phrase uttered by others. Scripting is similar to echolalia. Like its name, scripting is like having a pre-written social "script" that an autistic person memorizes and repeats to make social situations easier. Click below for a video explanation.
Meltdown
An autistic meltdown is very different from a temper tantrum. Meltdowns result from an autistic person being overwhelmed with a sensory or emotional overload. They can not be controlled by the person, and they do not have an anterior motive like most temper tantrums do. Click below to learn more.
Masking
Masking, sometimes called camouflaging, refers to the strategies that many autistic people, especially females on the spectrum, use to disguise their autism from other people. They may use techniques like rehearsing speech, forcing eye contact, and copying the behavior of others. Masking can improve social integration, but it can also impede ASD diagnosis and is linked to worse mental health. Click below to read more.
Prosody
Prosody refers to the rhythm and intonation in speech and prose. Many autistic people have trouble understanding and using prosody in speech. This can make it difficult for them to understand the underlying meanings in what someone is saying. If an autistic person has trouble using prosody, their speech can come off as monotonic and emotionless or even sing-songish. Click below to read more.
Fixation
Fixation is a broad term that refers to the repetitive and sometimes obsessive behaviors, thoughts, routines, and interests of many autistic people. Behavior fixation includes
echolalia and perseveration (read above for explanations). Fixation on a specific topic, also called a special interest, is most often more positive than problematic. Click below to read more about fixations.
Intersectionality
ASD often occurs along with other physical and mental conditions, which is called comorbidity. Comorbid conditions can appear in infancy or may develop later on in life. It is important that comorbid conditions are looked for and diagnosed separately from an ASD label so they can be properly treated.
Common comorbid conditions with ASD are:
Anxiety
Epilepsy
OCD
ADHD
Gastrointestinal (GI) Disorders
Obesity
Depression
Bipolar Disorder
Fragile X Syndrome
Down Syndrome
Intellectual Disabilities/Developmental Delays
High Intelligence/Giftedness
Sensory Processing Disorder
Eating Disorders
Tourette syndrome/Tics
Sleep Problems
Treatment of ASD
There is no one standard treatment for autism, and there is no "cure." One cannot outgrow autism. Negative symptoms can be minimized while abilities can be maximized by a variety of therapies and interventions. The earlier diagnosis and intervention occurs, the more effective treatment is. The goal of treatment and accommodations should be to create a more accessible and happy life for people with autism, not forcing them to hide their autistic traits which is mentally draining and damaging.
Treatments include:
Cognitive behavior therapy
Joint attention therapy
Medication treatment
Nutritional therapy
Physical therapy
Social skills training
Occupational therapy
Speech-language therapy
School-based therapies
Behavioral management therapy
Alternative/augmentative communication (AAC)
Individualized Education Programs (IEP)/504-Plans
Facts and Statistics
Prevalence in the United States is estimated at 1 in 54 births
More than 3.5 million Americans live with autism spectrum disorder
35% of young adults (19-23) with autism have not had a job or received postgraduate education after leaving high school
ASD is about 4 times more common in boys
ASD occurs in all racial and ethnic groups
Around 30% of those with ASD are nonverbal
Around 10% of those with ASD have savant syndrome
Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention
A Quick History of Autism
One may think of autism as a new problem because its diagnosis has become so much more prevalent in recent years, but the diagnosis of autism has actually been around for over 60 years. The disorder itself has existed for much longer of course, but research is still ongoing in understanding it. Here is a quick timeline of how our understanding of autism has evolved throughout the last century.
1908: The word "autism" is first used by a psychiatrist.
1943: Leo Kanner, M.D., a child psychiatrist, publishes a paper describing 11 highly intelligent children who had "a powerful desire for aloneness" and "an obsessive insistence on persistent sameness." He named the condition "early infantile autism."
1944: A German scientist named Hans Asperger describes a "milder" form of autism that was coined Asperger's syndrome. The cases Asperger reported were all boys who were highly intelligent but had trouble with social interactions and specific obsessive interests. The DSM-5 later folded Asperger's syndrome into the overarching diagnoses of Autism Spectrum Disorder in 2013, but the term "Aspergers" is still used today.
1967: Psychologist Bruno Bettelheim spreads his theory that "refrigerator mothers" caused autism in their children by not loving them enough. This theory is completely false, but still contributes to the stigma today
that autism is the fault of inadequate parents
1977: Research finds that autism is largely caused by genetics as well as biological differences in brain development.
1980: The new 1980 Diagnostic and Statistical Manual of Mental Disorders (DSM III) lists Infantile autism as a disorder separate from childhood schizophrenia for the first time.
1987: The DSM replaces "infantile autism" with autism disorder, including a more expansive definition and a checklist of diagnostic criteria. The first study showing how intensive behavior therapy can help children with autism is published by UCLA psychologist Ivar Lovaas, Ph.D.
1991: The federal government makes autism a special education category, which allowed public schools to begin identifying children with autism and offering them special services.
1994: The DSM 4 adds Asperger's Syndrome, expanding the autism spectrum to include more the highly functioning cases of autism.
1998: A critically flawed article by Dr. Andrew Wakefield and his colleagues linking MRR vaccines to autism is published. The paper was retracted for its false claims, but the damage was already done. The anti-vaccination movements finds its roots in that article.
2002: Wakefield and his colleagues published a second flawed paper establishing a relationship between measles virus and autism. These findings were again debunked and retracted.
2013: The DSM 5, which is the most current DSM, folds 5 subcategories of autism including Asperger's Syndrome into the overarching Autism Spectrum Disorder.