Autism Spectrum Disorder

The Arc of Bartholomew County

The Arc of Bartholomew County is a nonprofit organization aiming to be the resource of choice for individuals with intellectual or developmental disabilities and their families.

The organization was established in 1956 and continues to serve the community.

The training you're currently exploring was developed with the support of a Heritage Fund grant. The grant's goal was to expand online services and build resilience during the pandemic.


Training Introduction

This training introduces Autism Spectrum Disorders (ASD), a common developmental disorder.

It's designed to be completed in one sitting, but there are no time limits. This is a guided learning experience. We expect this training to give you a deeper understanding of the topic both technically and culturally.


Causes of Autism

While there's no definitive answer to the cause of autism, science is making progress in understanding the genetics behind Autism Spectrum Disorders (ASD).

The information in this section explores several potential causes, contributing factors, and correlations associated with ASD:

  1. Environmental Risk Factors & Correlations

  2. De Novo Mutations

  3. No Evidence Supports Vaccination as a Cause


De Novo Mutations

de novo mutation is a genetic mutation that occurs during fertilization (in either the sperm or egg cell) or shortly thereafter (in the fertilized egg). The mutation isn't present in the child's parents, meaning the variation occurred randomly and isn't "passed" from parent to child.

A certain percentage (estimated to be between 10 and 30 percent) of children are suspected to have acquired the genetic makeup for autism due to these de novo mutations.

Research in this area is ongoing and continues to advance.


Environmental Risk Factors & Correlations

Several environmental risk factors exist which may contribute to the likelihood that a child is born with autism. Confounding factors make it difficult to confirm that these environmental factors are causative.

For example, parents who have children later in life are more likely to have children with autism. A confounding factor here may be that parents who have children later in life are more likely to have a genetic predisposition to having children with autism.

Mother's who are obese and those who have diabetes or certain immunological disorders, are more likely to have a child with autism. Babies with a low birthweight or those that experience oxygen deprivation during birth are also more likely to have autism.

Exposure to certain chemicals and pesticides has been idetified as a potential environmental risk factor for autism as well.

For reasons which aren't well understood, boys are approximately four times (4x) more likely to have autism than girls.

While there's no evidence to suggest differences in the prevalence of autism based on race or ethnic background, non-white children are more likely to have an intellectual disability associated with autism when compared to white children.


No Evidence Supports Vaccination as a Cause

No credible evidence has ever been found linking vaccine use to the incidence of autism. Individuals who avoid vaccines due to fear of autism are far more likely to contract vaccine-preventable diseases and worse health outcomes than those who receive the recommended immunizations.

The Centers for Disease Control (CDC) contributed to nine studies since 2003 and none of those studies found a link to vaccines or vaccine ingredients and autism. Additionally, a 2013 CDC study reviewed antigens in vaccines and found that antigen presence was no different in individual who have autism and those that don't.

To learn more visit the CDC's webpage regarding this issue.


Characteristics of Autism

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), includes a set of diagnostic criteria for Autism Spectrum Disorders (ASD). These are the criteria mental health professionals use to support a diagnosis of ASD.

Like other spectrum disorders, the severity for each of the following criteria will vary between different people, especially across different ages. Generally, though, each of the diagnostic critera will be present to some degree for individuals with ASD.

  1. Impaired Communication & Social Interactions

  2. Stereotypic or Repetitive Behaviors & Interests

  3. Other Characteristics of Autism


Impaired Communication & Social Interactions

Individuals with ASD often have difficulty communicating and interacting with others in social settings.

One aspect of this communication difficulty involves social reciprocity. Conversations lacking give-and-take feel one-sided and might cause others to limit conversation.

Effective social masking, the ability or practice of imitating positive social interaction, can cause ASD to go undiagnosed, especially in women.

Nonverbal communciation may also be problematic. Individuals with ASD may have trouble maintaining appropriate levels of eye contact. Other subtle aspects of body language, like the use of facial expressions and gestures, might cause communication issues too.

Having trouble maintaining and creating relationships is also common in individuals with ASD. Showing little interest in others or a lack of desire to make friends can lead to social isolation.

Additionally, individuals with autism may struggle to understand how to act in unfamiliar social situations.


Stereotypic or Repetitive Behaviors & Interests

Repetitive behaviors are associated with ASD. This may take the form of repetitive physical movements, like organizing toys in a specific way, and, in some cases, vocalizations.

Echolalia, a condition which causes one to "echo" or repeat phrases from another person may also appear in individuals with ASD.

A similar feature of ASD is a fixation or intense interest on narrow subjects. These special interests can cause a person to learn detailed, expert-level information in a particular area. Families may wish to find ways to help individuals with autism leverage these special interests into a career.

desire for sameness and rigidity in routines is also common. New or novel situations can be stressful and cause an individual with autism to be uncomfortable.

While somewhat different, but inherently related, an individual with autism may be hypersensitive to certain sensory inputs (e.g., sounds) which can make new situations and locations even more distressing.


Other Characteristics of Autism

When diagnosing autism spectrum disorder, additional criteria apply which are less about specific behaviors and more about the timing or impact of previously mentioned behaviors.

Since autism is developmental in nature, a person cannot become autistic; the symptoms of autism must occur or be present early in life.

There are mitigating factors, however, since certain individuals may find effective strategies to cope with autism. Autism must cause "clinically significant" issues with day-to-day functioning in one or more areas.

Lastly, and somewhat unsurprisingly, the symptoms of autism cannot be better explained by a different diagnosis. For example, an intellecual disability or a separate developmental delay, may appear to have autism.

After careful evaluation, however, these conditions may simply be similar to autism and the medical professional may find that a different diagnosis is more appropriate.


Autism Treatment

The Centers for Disease Control has a page dedicated to autism treatments which groups treatments into four categories: behavioral and communication-based approaches, medication, dietary approaches, and complementary and alternative medicine (CAM).

There is limited evidence that CAM or dietary approaches are effective, so these are not discussed further.

This section will explore useful treatments for individuals with autism and briefly discuss the lack of a "cure" for autism.

  1. Autism Cure

  2. Educational or Behavioral Intervention

  3. Medications for Symptoms


Autism Cure

At the time of this writing, scientific research indicates that autism is related to neurological development. This means that ASD is inherent in a person's neurological makeup and will remain with them throughout their life.

There is not currently a cure for ASD. Cultural developments have given rise to a movement toward appreciating differences in people with autism rather than identifying autism as something to be cured.

The use of treatments, described in this section, can help a person manage difficulties associated with autism. With supportive environments, behavioral interventions, and/or medications, many people with autism are able to live independent lives successfully.


Educational or Behavioral Intervention

Educational and behavioral interventions can be effective in helping a person with autism navigate society. Early diagnosis and intervention, whenever possible, can help a person avoid years of struggle. Upon entering the education system, a child with autism may benefit from an Individualized Education Program (IEP).

Given the wide variety of differences in ability for people with autism, interventions must be uniquely tailored to support each individual's strengths and weaknesses.

The interventions best suited for a person may change over time, some may need to be used over a long period of time while others may not be helpful at all.

Some examples of therapies and training which might be included in a treatment program are as follows: Applied Behavior Analysis (ABA) Therapy, occupational therapy (OT), speech therapy, and social skills training.

Especially for nonverbal individuals, assistive technologies like picture boards or speech-producting digital applications can simplify and enhance communication.


Medications for Symptoms

Given that ASD is a developmental disorder, no medication exists to specifically treat it. Medication can, however, be a valuable part of a treatment plan for a person with ASD.

ASD comorbidities can often be treated with medication. When these co-occurring conditions are treated, a person with ASD can experience a higher quality of life.

Antidepressants, like selective serotonin reuptake inhibitors (SSRIs) and tricyclics can be used to manage depression and obsessive-compulsive disorder. Anti-anxiety medication may be prescribed to handle panic or other anxiety disorders.

Antipsychotics, like risperidone and aripripazole, might be prescribed for bipolar disorder, schizophrenia, and mood issues such as irritability. Stimulants can help treat attention deficit hyperactivity disorder (ADHD). Anticonvulsants help to mitigate or avoid eplieptic seizures.

Additional information can be found at the National Institute of Health's website.


The Autism Spectrum

Autism is a unique condition, it manifests differently across each individual and, over time, autism has been classified in different ways. The Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-4) contained five different types of autism disorders, while the fifth edition (DSM-5) groups them into a single diagnosis: Autism Spectrum Disorders.

The spectrum here defines differences in ability and the severity of impairments found in individuals with autism.

This section discusses several less formal subgroups of autism spectrum disorders to illustrate some of these differences.

  1. Neurodiversity: Neurotypical & Neurodivergent

  2. Nonverbal Autism

  3. Autistic Savant Syndrome

  4. High-functioning Autism & Asperger syndrome

  5. Other Previously Used Autism Diagnoses


Neurodiversity: Neurotypical & Neurodivergent

Neurodiversity is a term that broadly refers to differences in brain functioning and ways of perceiving the world. With enhanced brain imaging techniques, these differences in brain "wiring" can be observed directly (though these advancements by themselves cannot be used to diagnose autism at this time).

Individuals with autism spectrum disorders are sometimes referred to as being neurodivergent. A person who doesn't have autism or another neurological diagnosis would be considered neurotypical.

The suffix "typical" is used in place of similar words (e.g., normal) to indicate that differences should be considered abnormal or that commonality shouldn't imply superiority.


Nonverbal Autism

Some individuals (estimated between 25% and 50%) with autism are classified as nonverbal. These individuals don't speak or have limited verbal abilities. A variety of reasons and co-occurring conditions may exist which cause a person to be nonverbal (e.g, speech apraxia).

Due to the communication barrier, individuals who are nonverbal may appear to others as have an intellectual deficit. Like all individuals with autism, an intellectual disability may or may not be present. This is especially challenging to understand in nonverbal individuals.

Tools, like the picture exchange system (PECS), provide an inexpensive way to enhance communication by using physical pictures that correspond to objects and desires.

Higher-tech devices (e.g., tablets with text-to-speech capabilities) and software are becoming more widely available as well.

Assistive technologies can drastically improve a nonverbal individual's ability to communicate and reduce the potential isolation associated with being unable to speak.


Autistic Savant Syndrome

A fascinating and scientifically mysterious subset of individuals with autism exhibit extraordinary abilities.

Savant syndrome, the name for this situation, may occur in a relatively large portion of individuals with autism, some estimates put the number as high as 10%. Lower estimates place this number at 1 in 200 or 0.5%.

Savant syndrome is often accompanied with severe social deficits, causing few of these individuals to be able to live independently.

In popular culture, the movie Rain Man stars Dustin Hoffman playing the role of an individual with savant syndrome. The real-life inspiration for the character in Rain Man, Kim Peek, has abilities that seem superhuman.

Peek has memorized thousands of books and is able to read two opposing pages simultaneously, one with his left eye and the other with his right.

Individuals with savant syndrome may have abilities in calculating days of the week from dates many years in the past. Another skill common in savants is the ability to reproduce photo-realistic art despite having viewed the source for a short period of time.


High-functioning Autism & Asperger syndrome

A group of individuals with autism appear to have unimpeded language and are without intellectual disabilities. Other aspects of autism, like repetitive behaviors and social difficulties persist in these individuals, though the symptoms are considered mild relative to other subgroups of autism.

High-functioning autism (HFA) and Asperger syndrome (named after Hans Asperger, a pediatrician in Austria who described children who exhibited signs of autism) are two distinct names that were previously used to classify these individuals.

The Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) and the World Health Organization's International Classification of Diseases, eleventh edition, no longer includes a diagnosis of high-functioning autism or Asperger syndrome.

These diagnoses have been replaced with the general autism spectrum disorder diagnosis.


Other Previously Used Autism Diagnoses

In prior editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM), additional diagnoses were used for conditions similar to autism. These conditions are included in autism spectrum disorders (ASD) and, as of the fifth edition of the DSM, are no longer in use.

Childhood Disintegrative Disorder (CDD) is a disorder where development is typical, until a child becomes 4 or 5 years old. At that time the child begins to regress in terms of development, losing developmental skills (e.g., language or motor development) which they previously acquired.

Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) was a classification for individuals who displayed developmental issues, but didn't meet additional criteria in order to be classifed as having autism. Like CDD, PDD-NOS has been included under ASDs in DSM-5.

Other names for conditions similar to autism that have been used in the past include the following: early infantile autism, childhood autism, Kanner's autism, and atypical autism.

Given the complexity and continued scientific developments, the psychiatric profession considers a diagnosis of ASD (with details about severity of symptoms) to be far more effective in communicating about autism, both to those affected and the general public.


Challenges of Autism

Autism comes with a variety of challenges. Due to autism's existence on a spectrum, individuals may experience these challenges severely, not at all, or somewhere in between.

This section expands upon several of these challenges and explores how they affect an individual's ability to find a unique place in society.

  1. Social

  2. Sensory

  3. Financial

  4. Comorbidities


Social

The communication issues with autism can lead to social challenges. Social skills that come naturally to individuals without autism are often opaque to those with autism.

Minor, but important, social conventions, like appropriate levels of eye contact, might pose a problem for people with autism. For nonverbal individuals, communication challenges can limit social connections.

Individuals with autism who have special interests may find that the discussion of those interests is socially divisive. This can lead to masking or hiding from discussing those topics or, alternatively, cause them to retreat to areas of conversation where they're most comfortable.

Balancing the give-and-take of conversations can be puzzling for individuals with autism.

An apparent lack of interest in others and signs of introversion can make relationships difficult to cultivate. Children with autism may have trouble making friends, a difficulty which may continue throughout his or her life. Romantic relationships, in a similar vein, may be a struggle or avoided completely by individuals with autism.

Novel forms and methods of communication (e.g., the internet) allows individuals with autism to develop social relationships in new ways, which can lessen the impact of these social challenges.


Sensory

It's common for individuals with autism to exhibit sensory differences that can pose unique challenges to daily life.

Sensory hyper-sensitivity might cause a person to experience certain stimuli in the environment more intensely. Certain sounds could be particularly troublesome for people with autism. Mitigating the impact of sounds could involve the use of headphones or other sound-cancelling devices.

A person with sensory hyper-sensitivity may exhibit irritability or outburts when over-stimulated. Individuals with autism may refer to this as sensory overload.

When overloaded a person with autism may perform self-stimulating, routine behaviors (stimming) to alleviate the overwhelm.

This sensory management behavior can be harmless (e.g., hand flapping) or potentially harmful (e.g., biting). Social pressure to avoid these behaviors can cause increased stress and anxiety in individuals with autism.

A person with autism may also be hypo-sensitive to sensory input. A reduced ability to balance, for example, could cause a person exhibit clumsiness often associated with autism.


Financial

Autism poses financial challenges for the indivdual and their families in several areas: direct medical and intervention costs, indirect opportunity costs to families, and employment challenges.

According to the CDC, children and adolescents with ASD have average medical costs four to six times larger than individuals without ASD.

For those who require extensive behavioral interventions, an additional "$40,000 to $60,000 per child per year" may be required, in addition to the previously mentioned direct medical costs. Indirectly, special education costs are also higher for communities and school systems serving individuals with ASD.

Indirect costs to families are another financial challenge of autism. The increased effort required to manage treatment plans and navigate insurance and benefit programs can have a negative effect on parental productivity.

Parents may be limited in their ability to pursue career advancement opportunities or may exit the workforce to provide additional care to children with autism.

Individuals with autism may also experience financial challenges in their own careers. According to one research study from Drexel university, a significant percentage of individuals with autism (42%) had never been employed in their early 20s, when compared to individuals with other disabilities.


Comorbidities

Individuals with autism commonly have other disorders as well. These comorbidities vary in severity and prevalence. Intellecutal disabilities are common in individuals with autism, but are not considered direct criteria for a diagnosis.

Attention deficit hyperactivity disorder (ADHD), developmental coordination disorder, anxiety disorders, schizophrenia, bipolar disorder, and depressive disorders often co-occur in individuals with autism.

Other conditions like Fragile X Syndrome (a chromosomal condition affecting sex chromosomes), tuberous sclerosis (a disease causing the growth of benign tumors), and Down syndrome are likely to be comorbid with autism.


Autism Myths

There are several myths related to autism that limit understanding and make inclusion more difficult than necessary. While this list is not exhaustive, the myths explored in this section are some of the most pervasive and problematic.

While reviewing this list, consider the consequences both personally and on a broader societal level of holding these incorrect beliefs. The truth about individuals with autism is far more interesting and complex than these myths allow.

  1. Inability to Empathize & Lack of Emotional Understanding

  2. Intellectual Disabilities & Learning Ability

  3. Vaccines

Inability to Empathize & Lack of Emotional Understanding

A common myth about individuals who are on the autism spectrum is the belief that they lack empathy. Unfortunately, this is inaccurate and causes problems for those who encounter individuals with autism (especially in adulthood).

One's ability to understand emotions is separate from the ability to recognize those emotions and react appropriately in social settings. Further, the severity of a person's symptoms can make this even more difficult to appreciate.

Difficulty expressing emotions in traditional ways allows this myth to persist. Individuals with autism may express emotions in unusual ways, but the fact remains barring other intellectual issues, a person with autism feels emotions internally and through others equivalently to those without autism.

Intellectual Disabilities & Learning Ability

Autism spectrum disorders (ASD) are not classifed as necessarily having differences in intellectual ability. This means a person with autism, regardless of communication abilites, might be intellectual equivalent to other individuals of a similar age.

Consequently, learning ability may also not be affected. This is particularly dissonant in individuals with autism who are nonverbal. The ability to communicate is often used as a sign of intelligence and, for individuals with autism, this simply does not apply.

A proportion of individuals who have autism also have an intellectual disability but, while relatively common, this is a separate diagnosis. Medical professionals must include an evaluation of intellectual ability when diagnosing autism since it can be so easily taken for granted.

Vaccines

Despite an overwhelming body of scientific evidence, the myth that vaccines contributes to the incidence of autism persists in some social circles. This is not only inaccurate, but has serious health consequences for communities and individuals who are immunocompromised.

Moreover, a limited understanding of science, especially around a scientific diagnosis as complex as autism spectrum disorders, can harm the public perception of a vast group of human beings.

The science is clear, vaccines are one of the safest and most effective interventions available in modern medical science. The failure to appropriately vaccinate has detrimental effects on long-term health outcomes.

The number of vaccine-preventable diseases will increase in the future and those who are vaccinated will have safer, healthier lives compared to those who don't.

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