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Introduction to Autism

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General Information

Autism spectrum disorder, the name adopted in 2013, is a developmental disorder characterized by persistent problems in social communication and interaction, along with restricted and repetitive patterns of behavior, interests or activities. 1  It replaces the older terms of autistic disorder, Asperger's syndrome and other conditions envisioned on "the great continuum" of autism. 2  Still, the defining features of the condition commonly referred to as "autism" remain essentially the same.

But what does autism  look  like? As you observe a person's behavior, what might make you suspect he or she could have autism? To explore this question, we return to the very first written account of autism.

First Accounts of Autism: Defining Characteristics

It is likely that autism has existed through the ages, but the first ever clinical account of the disorder was published by Dr. Leo Kanner in 1943. 3  Dr. Kanner, who developed the first child psychiatric service at a U.S. hospital, described a group of 11 children – eight boys and three girls – who had "autistic disturbances of affective contact." 4

Dr. Kanner based his report on direct observation, and much of what he set down has stood the test of time. He vividly depicted the essential features of autism, all of which are echoed in current-day diagnostic manuals. It is interesting to note that, just as in Kanner's study, the rate of autism in males continues to be much higher than the rate in females.

Hans Asperger, an Austrian pediatrician, was working at nearly the same time as Kanner with a similar group of children on the other side of the Atlantic. A milder form of autism, Asperger syndrome, was named after him.

About Autism

As the word "spectrum" suggests, people with autism spectrum disorder (ASD) may have challenges that run the gamut from mild to severe, with different levels of ability and disability. Someone may have no functional speech, or may have a rich vocabulary. He or she may be intellectually disabled or have an average or above average IQ. He may be socially withdrawn or may be socially active, although in an oblivious, eccentric way. He may be fixated on lining up toys in a certain order, or have an encyclopedic knowledge of animals or another favorite topic.

To learn about the symptoms of autism spectrum disorder, please see our  About Autism  section.

Newly Diagnosed?

Parents of children who have just been diagnosed with ASD often feel both devastated and panicked. In our  Newly Diagnosed  section, we address some of the issues most on the minds of parents in this situation.

Exploring Autism Treatments

When a child is diagnosed with an autism spectrum disorder, families face the next challenge: choosing the right treatments and therapies for their child. What are these treatments and therapies? How much do we know about them? How can a family best evaluate whether a treatment is working for their child?

In our  Autism Treatments  section, we explore current autism treatments, the evidence behind them, and what we are learning from the experience of individuals and families who have tried them.

Challenging Behaviors

Children with autism spectrum disorder may exhibit many behaviors their family, teachers and others find challenging. At the same time, those children often find the world at large a challenge, and the behavior of other people may be confusing to  them .

What are the behaviors that distinguish a child with an ASD from his or her typically-developing peers? Although these will vary according to the severity of a person's autism and their age, there are core issues that affect most people with autism spectrum disorder. See our  Challenging Behaviors  section to explore those topics.

Adults With Autism

Many of the children diagnosed when autism rates began rising in the 1990s are, or soon will be, adults. Visit our  Adults with Autism  section for articles on topics of interest to teenagers and adults, such as the transition to adult services, getting a driver's license, employment, housing and romantic relationships.

So Much Still to Learn: A Quest For Answers

Since the 1940s, when Doctors Kanner and Asperger were putting their remarkable insights regarding socially different children on paper, we have learned a great deal. As you peruse this website and other sources of information on autism, you will see how much has been discovered about autism spectrum disorder from research in a wide variety of fields, including genetics, neuroscience, and cognitive psychology.

What will also become evident is how many questions remain unanswered. We still don't know exactly what causes autism; we haven't yet been able to identify specific subtypes of autism; and we still have very few proven treatments for autism.

The answers to our urgent questions will only come through research. The Interactive Autism Network was created to facilitate just that.

We hope individuals with ASD and their families will use this site to become informed consumers of autism research, and to become part of research studies themselves. Care providers, educators, researchers,

We salute each and every one of you who is committed to finding answers: individuals with autism and their families, researchers and educators, doctors and therapists, advocates and policy makers. We are here for you, and hope you will contact us with your questions, ideas, and concerns.

• American Psychiatric Association. (2013).  Diagnostic and statistical manual of mental disorders  (5th ed.). Arlington, VA: American Psychiatric Publishing.
• Grandin, T. (2006).  Thinking in pictures: My life with autism  (Exp. ed.). New York: Vintage Books. (Pg. 47.)
• Volkmar, F., & Klin, A. (2005). Issues in the classification of autism and related conditions. In F. Volkmar et al. (Eds.),  Handbook of Autism and Pervasive Developmental Disorders  (pp.5-41). Hoboken, NJ: John Wiley & Sons.
• Kanner, L. (1943).  Autistic disturbances of affective contact. Nervous Child, 2 , 217-250.

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• Autism spectrum disorder

Autism spectrum disorder is a condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication. The disorder also includes limited and repetitive patterns of behavior. The term "spectrum" in autism spectrum disorder refers to the wide range of symptoms and severity.

Autism spectrum disorder includes conditions that were previously considered separate — autism, Asperger's syndrome, childhood disintegrative disorder and an unspecified form of pervasive developmental disorder. Some people still use the term "Asperger's syndrome," which is generally thought to be at the mild end of autism spectrum disorder.

Autism spectrum disorder begins in early childhood and eventually causes problems functioning in society — socially, in school and at work, for example. Often children show symptoms of autism within the first year. A small number of children appear to develop normally in the first year, and then go through a period of regression between 18 and 24 months of age when they develop autism symptoms.

While there is no cure for autism spectrum disorder, intensive, early treatment can make a big difference in the lives of many children.

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Some children show signs of autism spectrum disorder in early infancy, such as reduced eye contact, lack of response to their name or indifference to caregivers. Other children may develop normally for the first few months or years of life, but then suddenly become withdrawn or aggressive or lose language skills they've already acquired. Signs usually are seen by age 2 years.

Each child with autism spectrum disorder is likely to have a unique pattern of behavior and level of severity — from low functioning to high functioning.

Some children with autism spectrum disorder have difficulty learning, and some have signs of lower than normal intelligence. Other children with the disorder have normal to high intelligence — they learn quickly, yet have trouble communicating and applying what they know in everyday life and adjusting to social situations.

Because of the unique mixture of symptoms in each child, severity can sometimes be difficult to determine. It's generally based on the level of impairments and how they impact the ability to function.

Below are some common signs shown by people who have autism spectrum disorder.

Social communication and interaction

A child or adult with autism spectrum disorder may have problems with social interaction and communication skills, including any of these signs:

• Fails to respond to his or her name or appears not to hear you at times
• Resists cuddling and holding, and seems to prefer playing alone, retreating into his or her own world
• Has poor eye contact and lacks facial expression
• Doesn't speak or has delayed speech, or loses previous ability to say words or sentences
• Can't start a conversation or keep one going, or only starts one to make requests or label items
• Speaks with an abnormal tone or rhythm and may use a singsong voice or robot-like speech
• Repeats words or phrases verbatim, but doesn't understand how to use them
• Doesn't appear to understand simple questions or directions
• Doesn't express emotions or feelings and appears unaware of others' feelings
• Doesn't point at or bring objects to share interest
• Inappropriately approaches a social interaction by being passive, aggressive or disruptive
• Has difficulty recognizing nonverbal cues, such as interpreting other people's facial expressions, body postures or tone of voice

Patterns of behavior

A child or adult with autism spectrum disorder may have limited, repetitive patterns of behavior, interests or activities, including any of these signs:

• Performs repetitive movements, such as rocking, spinning or hand flapping
• Performs activities that could cause self-harm, such as biting or head-banging
• Develops specific routines or rituals and becomes disturbed at the slightest change
• Has problems with coordination or has odd movement patterns, such as clumsiness or walking on toes, and has odd, stiff or exaggerated body language
• Is fascinated by details of an object, such as the spinning wheels of a toy car, but doesn't understand the overall purpose or function of the object
• Is unusually sensitive to light, sound or touch, yet may be indifferent to pain or temperature
• Doesn't engage in imitative or make-believe play
• Fixates on an object or activity with abnormal intensity or focus
• Has specific food preferences, such as eating only a few foods, or refusing foods with a certain texture

As they mature, some children with autism spectrum disorder become more engaged with others and show fewer disturbances in behavior. Some, usually those with the least severe problems, eventually may lead normal or near-normal lives. Others, however, continue to have difficulty with language or social skills, and the teen years can bring worse behavioral and emotional problems.

When to see a doctor

Babies develop at their own pace, and many don't follow exact timelines found in some parenting books. But children with autism spectrum disorder usually show some signs of delayed development before age 2 years.

If you're concerned about your child's development or you suspect that your child may have autism spectrum disorder, discuss your concerns with your doctor. The symptoms associated with the disorder can also be linked with other developmental disorders.

Signs of autism spectrum disorder often appear early in development when there are obvious delays in language skills and social interactions. Your doctor may recommend developmental tests to identify if your child has delays in cognitive, language and social skills, if your child:

• Doesn't respond with a smile or happy expression by 6 months
• Doesn't mimic sounds or facial expressions by 9 months
• Doesn't babble or coo by 12 months
• Doesn't gesture — such as point or wave — by 14 months
• Doesn't say single words by 16 months
• Doesn't play "make-believe" or pretend by 18 months
• Doesn't say two-word phrases by 24 months
• Loses language skills or social skills at any age

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Autism spectrum disorder has no single known cause. Given the complexity of the disorder, and the fact that symptoms and severity vary, there are probably many causes. Both genetics and environment may play a role.

• Genetics. Several different genes appear to be involved in autism spectrum disorder. For some children, autism spectrum disorder can be associated with a genetic disorder, such as Rett syndrome or fragile X syndrome. For other children, genetic changes (mutations) may increase the risk of autism spectrum disorder. Still other genes may affect brain development or the way that brain cells communicate, or they may determine the severity of symptoms. Some genetic mutations seem to be inherited, while others occur spontaneously.
• Environmental factors. Researchers are currently exploring whether factors such as viral infections, medications or complications during pregnancy, or air pollutants play a role in triggering autism spectrum disorder.

No link between vaccines and autism spectrum disorder

One of the greatest controversies in autism spectrum disorder centers on whether a link exists between the disorder and childhood vaccines. Despite extensive research, no reliable study has shown a link between autism spectrum disorder and any vaccines. In fact, the original study that ignited the debate years ago has been retracted due to poor design and questionable research methods.

Avoiding childhood vaccinations can place your child and others in danger of catching and spreading serious diseases, including whooping cough (pertussis), measles or mumps.

Risk factors

The number of children diagnosed with autism spectrum disorder is rising. It's not clear whether this is due to better detection and reporting or a real increase in the number of cases, or both.

Autism spectrum disorder affects children of all races and nationalities, but certain factors increase a child's risk. These may include:

• Your child's sex. Boys are about four times more likely to develop autism spectrum disorder than girls are.
• Family history. Families who have one child with autism spectrum disorder have an increased risk of having another child with the disorder. It's also not uncommon for parents or relatives of a child with autism spectrum disorder to have minor problems with social or communication skills themselves or to engage in certain behaviors typical of the disorder.
• Other disorders. Children with certain medical conditions have a higher than normal risk of autism spectrum disorder or autism-like symptoms. Examples include fragile X syndrome, an inherited disorder that causes intellectual problems; tuberous sclerosis, a condition in which benign tumors develop in the brain; and Rett syndrome, a genetic condition occurring almost exclusively in girls, which causes slowing of head growth, intellectual disability and loss of purposeful hand use.
• Extremely preterm babies. Babies born before 26 weeks of gestation may have a greater risk of autism spectrum disorder.
• Parents' ages. There may be a connection between children born to older parents and autism spectrum disorder, but more research is necessary to establish this link.

Complications

Problems with social interactions, communication and behavior can lead to:

• Problems in school and with successful learning
• Employment problems
• Inability to live independently
• Social isolation
• Stress within the family
• Victimization and being bullied

More Information

• Autism spectrum disorder and digestive symptoms

There's no way to prevent autism spectrum disorder, but there are treatment options. Early diagnosis and intervention is most helpful and can improve behavior, skills and language development. However, intervention is helpful at any age. Though children usually don't outgrow autism spectrum disorder symptoms, they may learn to function well.

• Autism spectrum disorder (ASD). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/autism/facts.html. Accessed April 4, 2017.
• Uno Y, et al. Early exposure to the combined measles-mumps-rubella vaccine and thimerosal-containing vaccines and risk of autism spectrum disorder. Vaccine. 2015;33:2511.
• Taylor LE, et al. Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies. Vaccine. 2014;32:3623.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Overview of management. https://www.uptodate.com/home. Accessed April 4, 2017.
• Autism spectrum disorder. In: Diagnostic and Statistical Manual of Mental Disorders DSM-5. 5th ed. Arlington, Va.: American Psychiatric Association; 2013. http://dsm.psychiatryonline.org. Accessed April 4, 2017.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Complementary and alternative therapies. https://www.uptodate.com/home. Accessed April 4, 2017.
• Augustyn M. Autism spectrum disorder: Terminology, epidemiology, and pathogenesis. https://www.uptodate.com/home. Accessed April 4, 2017.
• Bridgemohan C. Autism spectrum disorder: Surveillance and screening in primary care. https://www.uptodate.com/home. Accessed April 4, 2017.
• Levy SE, et al. Complementary and alternative medicine treatments for children with autism spectrum disorder. Child and Adolescent Psychiatric Clinics of North America. 2015;24:117.
• Brondino N, et al. Complementary and alternative therapies for autism spectrum disorder. Evidence-Based Complementary and Alternative Medicine. http://dx.doi.org/10.1155/2015/258589. Accessed April 4, 2017.
• Volkmar F, et al. Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry. 2014;53:237.
• Autism spectrum disorder (ASD). Eunice Kennedy Shriver National Institute of Child Health and Human Development. https://www.nichd.nih.gov/health/topics/autism/Pages/default.aspx. Accessed April 4, 2017.
• American Academy of Pediatrics policy statement: Sensory integration therapies for children with developmental and behavioral disorders. Pediatrics. 2012;129:1186.
• James S, et al. Chelation for autism spectrum disorder (ASD). Cochrane Database of Systematic Reviews. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010766.pub2/abstract;jsessionid=9467860F2028507DFC5B69615F622F78.f04t02. Accessed April 4, 2017.
• Van Schalkwyk GI, et al. Autism spectrum disorders: Challenges and opportunities for transition to adulthood. Child and Adolescent Psychiatric Clinics of North America. 2017;26:329.
• Autism. Natural Medicines. https://naturalmedicines.therapeuticresearch.com. Accessed April 4, 2017.
• Autism: Beware of potentially dangerous therapies and products. U.S. Food and Drug Administration. https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm394757.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery. Accessed May 19, 2017.
• Drutz JE. Autism spectrum disorder and chronic disease: No evidence for vaccines or thimerosal as a contributing factor. https://www.uptodate.com/home. Accessed May 19, 2017.
• Weissman L, et al. Autism spectrum disorder in children and adolescents: Behavioral and educational interventions. https://www.uptodate.com/home. Accessed May 19, 2017.
• Huebner AR (expert opinion). Mayo Clinic, Rochester, Minn. June 7, 2017.

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Autism Spectrum Disorder

What is asd.

Autism spectrum disorder (ASD) is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Although autism can be diagnosed at any age, it is described as a “developmental disorder” because symptoms generally appear in the first 2 years of life.

According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) , a guide created by the American Psychiatric Association that health care providers use to diagnose mental disorders, people with ASD often have:

• Difficulty with communication and interaction with other people
• Restricted interests and repetitive behaviors
• Symptoms that affect their ability to function in school, work, and other areas of life

Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.

People of all genders, races, ethnicities, and economic backgrounds can be diagnosed with ASD. Although ASD can be a lifelong disorder, treatments and services can improve a person’s symptoms and daily functioning. The American Academy of Pediatrics recommends that all children receive screening for autism. Caregivers should talk to their child’s health care provider about ASD screening or evaluation.

What are the signs and symptoms of ASD?

The list below gives some examples of common types of behaviors in people diagnosed with ASD. Not all people with ASD will have all behaviors, but most will have several of the behaviors listed below.

Social communication / interaction behaviors may include:

• Making little or inconsistent eye contact
• Appearing not to look at or listen to people who are talking
• Infrequently sharing interest, emotion, or enjoyment of objects or activities (including infrequent pointing at or showing things to others)
• Not responding or being slow to respond to one’s name or to other verbal bids for attention
• Having difficulties with the back and forth of conversation
• Often talking at length about a favorite subject without noticing that others are not interested or without giving others a chance to respond
• Displaying facial expressions, movements, and gestures that do not match what is being said
• Having an unusual tone of voice that may sound sing-song or flat and robot-like
• Having trouble understanding another person’s point of view or being unable to predict or understand other people’s actions
• Difficulties adjusting behaviors to social situations
• Difficulties sharing in imaginative play or in making friends

Restrictive / repetitive behaviors may include:

• Repeating certain behaviors or having unusual behaviors, such as repeating words or phrases (a behavior called echolalia)
• Having a lasting intense interest in specific topics, such as numbers, details, or facts
• Showing overly focused interests, such as with moving objects or parts of objects
• Becoming upset by slight changes in a routine and having difficulty with transitions
• Being more sensitive or less sensitive than other people to sensory input, such as light, sound, clothing, or temperature

People with ASD may also experience sleep problems and irritability.

People on the autism spectrum also may have many strengths, including:

• Being able to learn things in detail and remember information for long periods of time
• Being strong visual and auditory learners
• Excelling in math, science, music, or art

What are the causes and risk factors for ASD?

Researchers don’t know the primary causes of ASD, but studies suggest that a person’s genes can act together with aspects of their environment to affect development in ways that lead to ASD. Some factors that are associated with an increased likelihood of developing ASD include:

• Having a sibling with ASD
• Having older parents
• Having certain genetic conditions (such as Down syndrome or Fragile X syndrome)
• Having a very low birth weight

How is ASD diagnosed?

Health care providers diagnose ASD by evaluating a person’s behavior and development. ASD can usually be reliably diagnosed by age 2. It is important to seek an evaluation as soon as possible. The earlier ASD is diagnosed, the sooner treatments and services can begin.

Diagnosis in young children

Diagnosis in young children is often a two-stage process.

Stage 1: General developmental screening during well-child checkups

Every child should receive well-child check-ups with a pediatrician or an early childhood health care provider. The American Academy of Pediatrics recommends that all children receive screening for developmental delays at their 9-, 18-, and 24- or 30-month well-child visits, with specific autism screenings at their 18- and 24-month well-child visits. A child may receive additional screening if they have a higher likelihood of ASD or developmental problems. Children with a higher likelihood of ASD include those who have a family member with ASD, show some behaviors that are typical of ASD, have older parents, have certain genetic conditions, or who had a very low birth weight.

Considering caregivers’ experiences and concerns is an important part of the screening process for young children. The health care provider may ask questions about the child’s behaviors and evaluate those answers in combination with information from ASD screening tools and clinical observations of the child. Read more about screening instruments   on the Centers for Disease Control and Prevention (CDC) website.

If a child shows developmental differences in behavior or functioning during this screening process, the health care provider may refer the child for additional evaluation.

Stage 2: Additional diagnostic evaluation

It is important to accurately detect and diagnose children with ASD as early as possible, as this will shed light on their unique strengths and challenges. Early detection also can help caregivers determine which services, educational programs, and behavioral therapies are most likely to be helpful for their child.

A team of health care providers who have experience diagnosing ASD will conduct the diagnostic evaluation. This team may include child neurologists, developmental pediatricians, speech-language pathologists, child psychologists and psychiatrists, educational specialists, and occupational therapists.

The diagnostic evaluation is likely to include:

• Medical and neurological examinations
• Assessment of the child’s cognitive abilities
• Assessment of the child’s language abilities
• Observation of the child’s behavior
• An in-depth conversation with the child’s caregivers about the child’s behavior and development
• Assessment of age-appropriate skills needed to complete daily activities independently, such as eating, dressing, and toileting

Because ASD is a complex disorder that sometimes occurs with other illnesses or learning disorders, the comprehensive evaluation may include:

• Blood tests
• Hearing test

The evaluation may lead to a formal diagnosis and recommendations for treatment.

Diagnosis in older children and adolescents

Caregivers and teachers are often the first to recognize ASD symptoms in older children and adolescents who attend school. The school’s special education team may perform an initial evaluation and then recommend that a child undergo additional evaluation with their primary health care provider or a health care provider who specialize in ASD.

A child’s caregivers may talk with these health care providers about their child’s social difficulties, including problems with subtle communication. For example, some children may have problems understanding tone of voice, facial expressions, or body language. Older children and adolescents may have trouble understanding figures of speech, humor, or sarcasm. They also may have trouble forming friendships with peers.

Diagnosis in adults

Diagnosing ASD in adults is often more difficult than diagnosing ASD in children. In adults, some ASD symptoms can overlap with symptoms of other mental health disorders, such as anxiety disorder or attention-deficit/hyperactivity disorder (ADHD).

Adults who notice signs of ASD should talk with a health care provider and ask for a referral for an ASD evaluation. Although evaluation for ASD in adults is still being refined, adults may be referred to a neuropsychologist, psychologist, or psychiatrist who has experience with ASD. The expert will ask about:

• Social interaction and communication challenges
• Sensory issues
• Repetitive behaviors
• Restricted interests

The evaluation also may include a conversation with caregivers or other family members to learn about the person’s early developmental history, which can help ensure an accurate diagnosis.

Receiving a correct diagnosis of ASD as an adult can help a person understand past challenges, identify personal strengths, and find the right kind of help. Studies are underway to determine the types of services and supports that are most helpful for improving the functioning and community integration of autistic transition-age youth and adults.

What treatment options are available for ASD?

Treatment for ASD should begin as soon as possible after diagnosis. Early treatment for ASD is important as proper care and services can reduce individuals’ difficulties while helping them build on their strengths and learn new skills.

People with ASD may face a wide range of issues, which means that there is no single best treatment for ASD. Working closely with a health care provider is an important part of finding the right combination of treatment and services.

A health care provider may prescribe medication to treat specific symptoms. With medication, a person with ASD may have fewer problems with:

• Irritability
• Repetitive behavior
• Hyperactivity
• Attention problems
• Anxiety and depression

Read more about the latest medication warnings, patient medication guides, and information on newly approved medications at the Food and Drug Administration (FDA) website  .

Behavioral, psychological, and educational interventions

People with ASD may be referred to a health care provider who specializes in providing behavioral, psychological, educational, or skill-building interventions. These programs are often highly structured and intensive, and they may involve caregivers, siblings, and other family members. These programs may help people with ASD:

• Learn social, communication, and language skills
• Reduce behaviors that interfere with daily functioning
• Increase or build upon strengths
• Learn life skills for living independently

Other resources

Many services, programs, and other resources are available to help people with ASD. Here are some tips for finding these additional services:

• Contact your health care provider, local health department, school, or autism advocacy group to learn about special programs or local resources.
• Find an autism support group. Sharing information and experiences can help people with ASD and their caregivers learn about treatment options and ASD-related programs.
• Record conversations and meetings with health care providers and teachers. This information may help when it’s time to decide which programs and services are appropriate.
• Keep copies of health care reports and evaluations. This information may help people with ASD qualify for special programs.

How can I find a clinical trial for ASD?

Clinical trials are research studies that look at new ways to prevent, detect, or treat diseases and conditions. The goal of clinical trials is to determine if a new test or treatment works and is safe. Although individuals may benefit from being part of a clinical trial, participants should be aware that the primary purpose of a clinical trial is to gain new scientific knowledge so that others may be better helped in the future.

Researchers at NIMH and around the country conduct many studies with patients and healthy volunteers. We have new and better treatment options today because of what clinical trials uncovered years ago. Be part of tomorrow’s medical breakthroughs. Talk to your health care provider about clinical trials, their benefits and risks, and whether one is right for you.

To learn more or find a study, visit:

• NIMH’s Clinical Trials webpage : Information about participating in clinical trials
• Clinicaltrials.gov: Current Studies on ASD  : List of clinical trials funded by the National Institutes of Health (NIH) being conducted across the country

Where can I learn more about ASD?

Free brochures and shareable resources.

• Autism Spectrum Disorder : This brochure provides information about the symptoms, diagnosis, and treatment of ASD. Also available  en español .
• Digital Shareables on Autism Spectrum Disorder : Help support ASD awareness and education in your community. Use these digital resources, including graphics and messages, to spread the word about ASD.

Federal resources

• Eunice Kennedy Shriver National Institute of Child Health and Human Development  
• National Institute of Neurological Disorders and Stroke  
• National Institute on Deafness and Other Communication Disorders  
• Centers for Disease Control and Prevention   (CDC)
• Interagency Autism Coordinating Committee  
• MedlinePlus   (also available en español  )

Research and statistics

• Science News About Autism Spectrum Disorder : This NIMH webpage provides press releases and announcements about ASD.
• Research Program on Autism Spectrum Disorders : This NIMH program supports research focused on the characterization, pathophysiology, treatment, and outcomes of ASD and related disorders.
• Statistics: Autism Spectrum Disorder : This NIMH webpage provides information on the prevalence of ASD in the U.S.
• Data & Statistics on Autism Spectrum Disorder   : This CDC webpage provides data, statistics, and tools about prevalence and demographic characteristics of ASD.
• Autism and Developmental Disabilities Monitoring (ADDM) Network   : This CDC-funded program collects data to better understand the population of children with ASD.
• Biomarkers Consortium - The Autism Biomarkers Consortium for Clinical Trials (ABC-CT)   : This Foundation for the National Institutes of Health project seeks to establish biomarkers to improve treatments for children with ASD.

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Educating Children with Autism (2001)

Chapter: 16 conclusions and recommendations.

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16 Conclusions and Recommendations This chapter summarizes the committee’s conclusions about the state of the science in early intervention for children with autistic spectrum disorders and its recommendations for future intervention strategies, pro- grams, policy, and research. The chapter is organized around seven key areas pertaining to educational interventions for young children with autistic spectrum disorders: how the disorders are diagnosed and as- sessed and how prevalent they are; the effect on and role of families; appropriate goals for educational services; characteristics of effective in- terventions and educational programs; public policy approaches to en- suring access to appropriate education; the preparation of educational personnel; and needs for future research. DIAGNOSIS, ASSESSMENT, AND PREVALENCE Conclusions Autism is a developmental disorder of neurobiologic origin that is defined on the basis of behavioral and developmental features. Autism is best characterized as a spectrum of disorders that vary in severity of symptoms, age of onset, and association with other disorders (e.g., mental retardation, specific language delay, epilepsy). The manifestations of au- tism vary considerably across children and within an individual child over time. There is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a 211 

212 EDUCATING CHILDREN WITH AUTISM diagnosis of autism, even though there are strong and consistent com- monalities, especially relative to social deficits. The large constellation of behaviors that define autistic spectrum dis- orders—generally representing deficits in social interaction, verbal and nonverbal communication, and restricted patterns of interest or behav- iors—are clearly and reliably identifiable in very young children to expe- rienced clinicians and educators. However, distinctions among classical autism and atypical autism, pervasive developmental disorder-not other- wise specified (PDD-NOS), and Asperger’s disorder can be arbitrary and are often associated with the presence or severity of handicaps, such as mental retardation and severe language impairment. Identifying narrow categories within autism is necessary for some research purposes; however, the clinical or educational benefit to subclas- sifying autistic spectrum disorders purely by diagnosis is debated. In contrast, individual differences in language development, verbal and non- verbal communication, sensory or motor skills, adaptive behavior, and cognitive abilities have significant effects on behavioral presentation and outcome, and, consequently, have specific implications for educational goals and strategies. Thus, the most important considerations in pro- gramming have to do with the strengths and weaknesses of the indi- vidual child, the age at diagnosis, and early intervention. With adequate time and training, the diagnosis of autistic spectrum disorders can be made reliably in 2-year-olds by professionals experi- enced in the diagnostic assessment of young children with autistic spec- trum disorders. Many families report becoming concerned about their children’s behavior and expressing this concern, usually to health profes- sionals, even before this time. Research is under way to develop reliable methods of identification for even younger ages. Children with autistic spectrum disorders, like children with vision or hearing problems, re- quire early identification and diagnosis to equip them with the skills (e.g., imitation, communication) to benefit from educational services, with some evidence that earlier initiation of specific services for autistic spectrum disorders is associated with greater response to treatment. Thus, well meaning attempts not to label children with formal diagnoses can deprive children of specialized services. There are clear reasons for early identifi- cation of children, even as young as two years of age, within the autism spectrum. Epidemiological studies and service-based reports indicate that the prevalence of autistic spectrum disorders has increased in the last 10 years, in part due to better identification and broader categorization by educators, physicians, and other professionals. There is little doubt that more children are being identified as requiring specific educational inter- ventions for autistic spectrum disorders. This has implications for the provision of services at many levels. Analysis of data from the Office of 

CONCLUSIONS AND RECOMMENDATIONS 213 Special Education Programs, gathered for school-age children since the autism category was recognized in 1991, would support investigation of whether the dramatic increases in the numbers of children served with autistic spectrum disorders are offset by commensurate decreases in other categories in which children with autistic spectrum disorders might have previously been misclassified or whether these dramatic increases have come about for other reasons. Although children with autistic spectrum disorders share some char- acteristics with children who have other developmental disorders and may benefit from many of the same educational techniques, they offer unique challenges to families, teachers, and others who work with them. Their deficits in nonverbal and verbal communication require intense effort and skill even in the teaching of basic information. The unique difficulties in social interaction (e.g., in joint attention) may require more individual guidance than for other children in order to attract and sustain their children’s attention. Moreover, ordinary social exchanges between peers do not usually occur without deliberate planning and ongoing struc- turing by the adults in the child’s environment. The absence of typical friendships and peer relationships affects children’s motivation systems and the meaning of experiences. Appropriate social interactions may be some of the most difficult and important lessons a child with autistic spectrum disorders will learn. In addition, the frequency of behavior problems, such as tantrums and self-stimulatory and aggressive behavior, is high. The need for sys- tematic selection of rewards for many children with autistic spectrum disorders, whose motivation or interests can be limited, requires creativ- ity and continued effort from teachers and parents to maximize the child’s potential. Although general principles of learning and behavior analysis apply to autistic spectrum disorders, familiarity with the specific nature of the disorder should contribute to analysis of the contexts (e.g., commu- nicative and social) of behaviors for individual children and result in more effective programming. For example, conducting a functional as- sessment that considers contexts, and then replacing problem behaviors with more appropriate ways to communicate can be an effective method for reducing problem behaviors. Recommendations 1-1 Because of their shared continuities and their unique social diffi- culties, children with any autistic spectrum disorder (autistic disorder, Asperger’s disorder, atypical autism, PDD-NOS, child- hood disintegrative disorder), regardless of level of severity or function, should be eligible for special educational services within the category of autistic spectrum disorders, as opposed to other 

214 EDUCATING CHILDREN WITH AUTISM terminology used by school systems, such as other health im- paired, social emotionally maladjusted, significantly developmen- tally delayed, or neurologically impaired. 1-2 Identification of autistic spectrum disorders should include a for- mal multidisciplinary evaluation of social behavior, language and nonverbal communication, adaptive behavior, motor skills, atypi- cal behaviors, and cognitive status by a team of professionals experienced with autistic spectrum disorders. An essential part of this evaluation is the systematic gathering of information from parents on their observations and concerns. If the school system cannot carry out such an assessment, the local education author- ity should fund the assessment through external sources. Early diagnosis should be emphasized. Because of variability in early development, younger children with autistic spectrum disorders should receive a follow-up diagnostic and educational assess- ment within one to two years of initial evaluation. 1-3 Professional organizations, with the support of the National Insti- tutes of Health (NIH) and the Department of Education’s Office of Special Education Programs (OSEP), should disseminate infor- mation concerning the nature and range of autistic spectrum dis- orders in young children to all professionals who have contact with children, particularly those who work with infants, toddlers, and preschool children. This information should include the vari- able presentations and patterns of behavior seen in autistic spec- trum disorders from toddlers to school age children. Members of “child find” teams within the early intervention systems, as well as primary care providers, should be trained in identifying the “red flags of autistic spectrum disorders” and the importance and means of early referral for comprehensive diagnostic evaluation. Advocacy groups and relevant federal agencies, as well as profes- sional organizations, should use effective media resources, in- cluding the Internet, to provide information concerning the range of behaviors in autistic spectrum disorders. ROLE OF FAMILIES Conclusions Having a child with an autistic spectrum disorder is a challenge for any family. Involvement of families in the education of young children with autistic spectrum disorders can occur at multiple levels, including advocacy, parents as participating partners in and agents of education or 

CONCLUSIONS AND RECOMMENDATIONS 215 behavior change, and family-centered consideration of the needs and strengths of the family as a unit. Nearly all empirically supported treat- ments reviewed by the committee included a parent component, and most research programs used a parent-training approach. More informa- tion is needed about the benefits of a family-centered orientation or com- bined family-centered and formalized parent training in helping parents. It is well established that parents can learn and successfully apply skills to changing the behavior of their children with autistic spectrum disorders, though little is known about the effects of cultural differences, such as race, ethnicity, and social class, nor about the interactions among family factors, child characteristics, and features of educational interven- tion. For most families, having a child with an autistic spectrum disorder creates added stress. Parents’ use of effective teaching methods can have a significant effect on that stress, as can support from within the family and the community. Parents need access to balanced information about autistic spectrum disorders and the range of appropriate services and technologies in order to carry out their responsibilities. They also need timely information about assessments, educational plans, and the avail- able resources for their children. This information needs to be conveyed to them in a meaningful way that gives them time to prepare to fulfill their roles and responsibilities. In the last ten years the widespread availability of the Internet and media attention to autistic spectrum disorders have increased parents’ knowledge but often conveyed perspectives that were not balanced nor well-supported scientifically. Of crucial importance is the question of how to make information available to parents and to ensure their active role in advocacy for their children’s education. Recommendations 2-1 Parents’ concerns and perspectives should actively help to shape educational planning. Specifically: a. In order for a family to be effective members of the Indi- vidualized Education Plan (IEP) team that plans a child’s educa- tion, the local school system should provide to the parents, at the beginning of the assessment process, written information con- cerning the nature of autistic spectrum disorders and eligibility categories, the range of alternatives within best practices in early education of autistic spectrum disorders, sources of funding and support (e.g., a support guide and bibliography), and their child’s rights. b. Prior to the IEP meeting, the local school system should provide to each family the written results of their child’s assess- 

216 EDUCATING CHILDREN WITH AUTISM ment, and a contact person to explain the findings if they wish, and should indicate that they will have the opportunity to present their concerns. Early during the IEP meeting, parents should be given an opportunity to voice their questions, concerns, and per- spectives about their child’s development and educational pro- gramming. 2-2 As part of local educational programs and intervention programs for children from birth to age 3, families of children with autistic spectrum disorders should be provided the opportunity to learn techniques for teaching their child new skills and reducing prob- lem behaviors. These opportunities should include not only di- dactic sessions, but also ongoing consultation in which individu- alized problem-solving, including in-home observations or training, occur for a family, as needed, to support improvements at home as well as at school. 2-3 Families that are experiencing stress in raising their children with an autistic spectrum disorder should be provided with mental health support services. Under Part C of the Individuals with Disabilities Education Act (IDEA), which addresses family sup- port and service coordination, including private service provid- ers, services should be extended to include families of children at least up to age 8 years. GOALS FOR EDUCATIONAL SERVICES Conclusions At the root of questions about the most appropriate educational inter- ventions lie differences in assumptions about what is possible and what is important to give students with autistic spectrum disorders through edu- cation. The appropriate goals for educational services are the same as those for other children: personal independence and social responsibility. These goals imply continuous progress in social and cognitive abilities, verbal and nonverbal communication skills, adaptive skills, amelioration of behavioral difficulties, and generalization of abilities across multiple environments. In some cases, reports have suggested that particular treat- ments can foster permanent “recovery”. However, as with other develop- mental disabilities, the core deficits of autistic spectrum disorders have generally been found to persist, to some degree, in most individuals. Research concerning outcomes can be characterized by whether the goal of intervention is broadly defined (e.g., “recovery” or “best out- 

CONCLUSIONS AND RECOMMENDATIONS 217 come”) or more specifically defined (e.g., increasing vocabulary or peer- directed social behavior); whether the design involves reporting results in terms of group or individual changes; and whether the goals are short term (i.e., to be achieved in a few weeks or months) or longer term (i.e., over years). A large body of single-subject research has demonstrated substantial progress in individual responses to specific intervention tech- niques in relatively short periods of times (e.g., several months) in many specific areas, including gains in social skills, language acquisition, non- verbal communication, and reductions in challenging behaviors. Studies over longer periods of time have documented joint attention, symbolic play, early language skills, and imitation as core deficits and hallmarks of the disorder that are predictive of longer term outcome in the domains of language, adaptive behaviors, and academic skills. Many treatment studies report postintervention placement as an out- come measure. While successful participation in regular classrooms is an important goal for some children with autistic spectrum disorders, the usefulness of placement in regular education classes as an outcome mea- sure is limited, because placement may be related to many variables other than the characteristics of the child (e.g., prevailing trends in inclusion, availability of other services). The most commonly reported outcome measure in group treatment studies of children with autistic spectrum disorders has been changes in IQ scores, which also have many limita- tions. Studies have reported substantial changes in large numbers of chil- dren in intervention studies and longitudinal studies in which children received a variety of interventions. Even in the treatment studies that have shown the strongest gains, children’s outcomes are variable, with some children making substantial progress and others showing very slow gains. The needs and strengths of young children with autistic spectrum disorders are very heterogeneous. Although there is evidence that many interventions lead to improvements and that some children shift in spe- cific diagnosis along the autism spectrum during the preschool years, there does not appear to be a simple relationship between any particular intervention and “recovery” from autistic spectrum disorders. Thus, while substantial evidence exists that treatments can reach short-term specific goals in many areas, gaps remain in addressing larger questions of the relationships between particular techniques, child characteristics, and outcomes. Recommendations The IEP and Individual Family Service Plan (IFSP) should be the vehicles for planning and implementing educational objectives. 

218 EDUCATING CHILDREN WITH AUTISM 3-1 Appropriate educational objectives for children with autistic spec- trum disorders should be observable, measurable behaviors and skills. These objectives should be able to be accomplished within 1 year and expected to affect a child’s participation in education, the community, and family life. They should include the devel- opment of: a. Social skills to enhance participation in family, school, and community activities (e.g., imitation, social initiations and re- sponse to adults and peers, parallel and interactive play with peers and siblings); b. Expressive verbal language, receptive language, and non- verbal communication skills; c. A functional symbolic communication system; d. Increased engagement and flexibility in developmentally appropriate tasks and play, including the ability to attend to the environment and respond to an appropriate motivational system; e. Fine and gross motor skills used for age appropriate func- tional activities, as needed; f. Cognitive skills, including symbolic play and basic con- cepts, as well as academic skills; g. Replacement of problem behaviors with more conven- tional and appropriate behaviors; and h. Independent organizational skills and other behaviors that underlie success in regular education classrooms (e.g., complet- ing a task independently, following instructions in a group, ask- ing for help). 3-2 Ongoing measurement of educational objectives must be docu- mented in order to determine whether a child is benefiting from a particular intervention. Every child’s response to the educational program should be assessed after a short period of time. Progress should be monitored frequently and objectives adjusted accord- ingly. CHARACTERISTICS OF EFFECTIVE INTERVENTIONS Conclusions In general, there is consistent agreement across comprehensive inter- vention programs about a number of features, though practical and, some- times, ethical considerations have made well-controlled studies with ran- dom assignment very difficult to conduct without direct evaluation. Characteristics of the most appropriate intervention for a given child must 

CONCLUSIONS AND RECOMMENDATIONS 219 be tied to that child’s and family’s needs. However, without direct evalu- ation, it is difficult to know which features are of greatest importance in a program. Across primarily preschool programs, there is a very strong consensus that the following features are critical: • entry into intervention programs as soon as an autism spectrum diagnosis is seriously considered; • active engagement in intensive instructional programming for a minimum of the equivalent of a full school day, 5 days (at least 25 hours) a week, with full year programming varied according to the child’s choronological age and developmental level; • repeated, planned teaching opportunities generally organized around relatively brief periods of time for the youngest children (e.g., 15- 20 minute intervals), including sufficient amounts of adult attention in one-to-one and very small group instruction to meet individualized goals; • inclusion of a family component, including parent training; • low student/teacher ratios (no more than two young children with autistic spectrum disorders per adult in the classroom); and • mechanisms for ongoing program evaluation and assessments of individual children’s progress, with results translated into adjustments in programming. Curricula across different programs differ in a number of ways. They include the ways in which goals are prioritized, affecting the relative time spent on verbal and nonverbal communication, social activities, behav- ioral, academic, motor, and other domains. Strategies from various pro- grams represent a range of techniques, including discrete trials, incidental teaching, structured teaching, “floor time”, and individualized modifica- tions of the environment, including schedules. Some programs adopt a unilateral use of one set of procedures, and others use a combination of approaches. Programs also differ in the relative amount of time spent in homes, centers, or schools, when children are considered ready for inclu- sion into regular classrooms, how the role of peers as intervention agents is supported, and in the use of distraction-free or natural environments. Programs also differ in the credentials that are required of direct support and supervisory staff and the formal and informal roles of collateral staff, such as speech language pathologists and occupational therapists. Overall, many of the programs are more similar than different in terms of levels of organization, staffing, ongoing monitoring, and the use of certain techniques, such as discrete trials, incidental learning, and struc- tured teaching. However, there are real differences in philosophy and practice that provide a range of alternatives for parents and school sys- tems considering various approaches. The key to any child’s educational program lies in the objectives specified in the IEP and the ways they are 

220 EDUCATING CHILDREN WITH AUTISM addressed. Much more important than the name of the program attended is how the environment and educational strategies allow implementation of the goals for a child and family. Thus, effective services will and should vary considerably across individual children, depending on a child’s age, cognitive and language levels, behavioral needs, and family priorities. Recommendations The committee’s recommendations for effective treatment are made on the basis of empirical findings, information from selected representa- tive programs, and findings in the general education and developmental literature. In particular, it is well established that children with autism spend much less time in focused and socially directed activity when in unstructured situations than do other children. Therefore, it becomes crucial to specify time engaged in social and focused activity as part of a program for children with autistic spectrum disorders. 4-1 Based on a set of individualized, specialized objectives and plans that are systematically implemented, educational services should begin as soon as a child is suspected of having an autistic spec- trum disorder. Taking into account the needs and strengths of an individual child and family, the child’s schedule and educational environment, in and out of the classroom, should be adapted as needed in order to implement the IEP. Educational services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, develop- mentally appropriate educational activity aimed toward identi- fied objectives. Where this activity takes place and the content of the activity should be determined on an individual basis, de- pending on characteristics of both the child and the family. 4-2 A child must receive sufficient individualized attention on a daily basis so that individual objectives can be effectively implemented; individualized attention should include individual therapies, de- velopmentally appropriate small group instruction, and direct one-to-one contact with teaching staff. 4-3 Assessment of a child’s progress in meeting objectives should be used on an ongoing basis to further refine the IEP. Lack of objec- tively documentable progress over a 3 month period should be taken to indicate a need to increase intensity by lowering stu- 

CONCLUSIONS AND RECOMMENDATIONS 221 dent/teacher ratios, increasing programming time, reformulat- ing curricula, or providing additional training and consultation. 4-4 To the extent that it leads to the specified educational goals (e.g., peer interaction skills, independent participation in regular edu- cation), children should receive specialized instruction in settings in which ongoing interactions occur with typically developing children. 4-5 Six kinds of interventions should have priority: a. Functional, spontaneous communication should be the pri- mary focus of early education. For very young children, pro- gramming should be based on the assumption that most children can learn to speak. Effective teaching techniques for both verbal language and alternative modes of functional communication, drawn from the empirical and theoretical literature, should be vigorously applied across settings. b. Social instruction should be delivered throughout the day in various settings, using specific activities and interventions planned to meet age-appropriate, individualized social goals (e.g., with very young children, response to maternal imitation; with preschool children, cooperative activities with peers). c. The teaching of play skills should focus on play with peers, with additional instruction in appropriate use of toys and other materials. d. Other instruction aimed at goals for cognitive develop- ment should also be carried out in the context in which the skills are expected to be used, with generalization and maintenance in natural contexts as important as the acquisition of new skills. Because new skills have to be learned before they can be general- ized, the documentation of rates of acquisition is an important first step. Methods of introduction of new skills may differ from teaching strategies to support generalization and maintenance. e. Intervention strategies that address problem behaviors should incorporate information about the contexts in which the behaviors occur; positive, proactive approaches; and the range of techniques that have empirical support (e.g., functional assess- ment, functional communication training, reinforcement of alter- native behaviors). f. Functional academic skills should be taught when appro- priate to the skills and needs of a child. 

222 EDUCATING CHILDREN WITH AUTISM PUBLIC POLICIES Conclusions The Individuals with Disabilities Education Act (IDEA) contains the necessary provisions for ensuring rights to appropriate education for chil- dren with autistic spectrum disorders. However, the implementation and specification of these services are variable. Early intervention for young children with autistic spectrum disorders is expensive, and most local schools need financial help from the state and federal programs to pro- vide appropriate services. The large number of court cases is a symptom of the tension between families and school systems. Case law has yielded an inconsistent pattern of findings that vary according to the characteristics of the individual cases. The number of challenges to decision-making for programming within school systems reflects parents’ concerns about the adequacy of knowledge and the expertise of school systems in determining their children’s education and implementing appropriate techniques. The treatment of autistic spectrum disorders often involves many disciplines and agencies. This confuses lines of financial and intellectual responsibility and complicates assessment and educational planning. When communication between families and school systems goes awry, it can directly affect children’s programming and the energy and financial resources that are put into education rather than litigation. Support sys- tems are not generally adequate in undergirding local service delivery programs and maximizing the usefulness of different disciplines and agencies, and transitions between service delivery agencies are often prob- lematic. A number of states have successful models for providing services to children with autism, and mechanisms are becoming increasingly effi- cient and flexible in some states. In most cases, existing agencies at state and federal levels can develop appropriate programs without restructur- ing—with the possible addition of special task forces or committees de- signed to deal with issues particular to children with autistic spectrum disorders. Recommendations The committee recommends that a variety of steps be taken to ensure that policies are effectively carried out at the state and local levels. 5-1 At the federal level, the National Institutes of Health’s Autism Coordinating Committee and the Federal Interagency Coordinat- ing Council should jointly appoint a clinical research oversight 

CONCLUSIONS AND RECOMMENDATIONS 223 task force of professionals knowledgeable in the field of autistic spectrum disorders, to review and periodically report on basic and applied research programs to the parent agencies and to track program implementation through the State Interagency Coordi- nating Councils or relevant state agencies. Administrative sup- port for these efforts should be provided by the appropriate de- partment of the Secretary’s office. 5-2 States should have regional resource and training centers with expertise in autistic spectrum disorders to provide training and technical support to local schools. States should also have a mechanism to evaluate the adequacy of current support systems to local schools and recommend ways for improvement. One such mechanism could be an autistic spectrum disorders support systems task force that would examine the relevant provisions for personnel preparation, technical assistance, and demonstration of exemplary programs and would make recommendations as to what would be needed to bring a state’s support systems into alignment with quality education for children with autistic spec- trum disorders. States should monitor coordination among and transitions between service delivery systems and should develop ways to facilitate these processes. 5-3 Families should have access to consultation and legal knowledge such as provided by an ombudsman who is independent of the school system and who could be a standard part of Individual- ized Educational Plan planning and meetings. The ombudsman should be knowledgeable about autistic spectrum disorders and about relevant law and court decisions. The ombudsman’s role should include attending IEP meetings, interpreting the school system’s communications about a child to parents, and propos- ing, at the parents’ request, alternatives to those presented by the school system. Professional and advocacy groups should work together to provide this service, with the Governor’s Council for Developmental Disabilities or the Autistic Spectrum Disorders Support Systems Task Force responsible for ensuring funding for training and support of this service. 5-4 State and federal agencies should consider ways to work with and support professional and advocacy groups to provide up-to- date, practical, scientifically valid information to parents and practitioners. 

224 EDUCATING CHILDREN WITH AUTISM 5-5 States should have clearly defined minimum standards for per- sonnel in educational settings for children with autistic spectrum disorders. For example, at a minimum, teachers should have some special preparation (e.g., preservice course work, equiva- lent inservice training, workshops, and supervised practice in re- search-based practices in autistic spectrum disorders) and should have well-trained, experienced support personnel available to provide ongoing training and additional consultation. 5-6 States should develop a systematic strategy to fund the interven- tions that are necessary for children with autistic spectrum disor- ders in local schools, so that this cost is not borne primarily by the parents or local school systems. State education departments should develop interagency collaborations to pool support for local systems. A state fund for intensive intervention, or more systematic use of Medicaid waivers or other patterns of funding currently in place in some states, should be considered. Families should not be expected to fund or provide the majority of educa- tional programming for their children. 5-7 An updated, accurate summary of case law, consultation services, and mediation mechanisms in autistic spectrum disorders should be made accessible by the Office of Special Education Programs so that schools and parents can understand the options available to them when conflicts arise. 5-8 Since levels of information about autistic spectrum disorders vary greatly within the groups and agencies that make funding and policy decisions about autistic spectrum disorders, including state task forces in education and review panels in federal agencies, it is crucial that persons knowledgeable in the range of needs and interventions associated with autistic spectrum disorders be in- cluded in those decision-making activities. PERSONNEL PREPARATION Conclusions The nature of autistic spectrum disorders and other disabilities that frequently accompany them has significant implications for approaches to education and intervention at school, in the home, and in the commu- nity. Approaches that emphasize the use of specific “packages” of mate- rials and methods associated with comprehensive intervention programs 

CONCLUSIONS AND RECOMMENDATIONS 225 may understate the multiple immediate and long-term needs of children for behavior support and for instruction across areas. Teachers are faced with a huge task. They must be familiar with theory and research concerning best practices for children with autistic spectrum disorders, including methods of applied behavior analysis, naturalistic learning, assistive technology, socialization, communication, inclusion, adaptation of the environment, language interventions, assess- ment, and the effective use of data collection systems. Specific problems in generalization and maintenance of behaviors also affect the need for training in methods of teaching children with autistic spectrum disorders. The wide range of IQ scores and verbal skills associated with autistic spectrum disorders, from profound mental retardation and severe lan- guage impairments to superior intelligence, intensify the need for person- nel training. To enable teachers to adequately work with parents and with other professionals to set appropriate goals, teachers need familiar- ity with the course of autistic spectrum disorders and the range of pos- sible outcomes. Teachers learn according to the same principles as their students. Multiple exposures, opportunities to practice, and active involvement in learning are all important aspects of learning for teachers, as well as stu- dents. Many states and community organizations have invested substan- tial funds in teacher preparation through workshops and large-audience lectures by well-known speakers. While such presentations can stimulate enthusiasm, they do not substitute for ongoing consultation and hands- on opportunities to observe and practice skills working with children with autistic spectrum disorders. Personnel preparation remains one of the weakest elements of effec- tive programming for children with autistic spectrum disorders and their families. Ways of building on the knowledge of teachers as they acquire experience with children with autistic spectrum disorders, and ways of keeping skilled personnel within the field, are critical. This is particularly true given recent trends for dependence on relatively inexperienced assis- tants for in-home programs. Providing knowledge about autistic spec- trum disorders to special education and regular education administra- tors, as well as to specialized providers with major roles in early intervention (e.g., speech language pathologists) will be critical in effect- ing change that is proactive. Findings concerning change in educational and other opportunities suggest that administrative attitudes and sup- port are critical in improving schools. Recommendations The committee recommends that relevant state and federal agencies institute an agenda for upgrading personnel preparation for those who 

226 EDUCATING CHILDREN WITH AUTISM work with, and are responsible for, children with autistic spectrum disor- ders and their families. These efforts should be part of a larger effort to coordinate and collaborate with the already established infrastructure of special education, regional resource centers, technical assistance pro- grams, personnel preparation, communication sharing, and other relevant aspects of the existing infrastructure. Professionals aware of the special nature of these children are already carrying out many of these recom- mendations in a limited fashion. The committee urges agencies to pro- vide the personnel preparation resources needed for intensified efforts to build a viable support structure for educating children with autistic spec- trum disorders. 6-1 The Office of Special Education Programs should establish a 5- year plan to provide priority funds for preservice and inservice preparation for teachers, paraprofessionals, and other personnel providing services for children with autistic spectrum disorders, including children under age 3 years. 6-2 The need for a team approach involving many professions should be addressed by personnel preparation and practicum work within multidisciplined organizations and teams. 6-3 A special emphasis should be placed on training of trainers. There is a short supply of expertise and experience in the field of educa- tion for children with autistic spectrum disorders, and special attention should be paid to rapidly increase the capabilities of the trainers, who may have experience in special education or related fields, but not in the special skills and practices for children with autistic spectrum disorders. 6-4 The existing support systems that provide short-term training (e.g., technical assistance systems, resource centers, etc.) should include people with special expertise in autistic spectrum disor- ders on their staff. 6-5 The content of the curriculum for children with autistic spectrum disorders should be based on sound research. A continuing pro- gram should be established from such agencies as the National Institute of Mental Health and the National Institute of Child Health and Human Development to translate their research into usable information for practitioners. Work on family research is particularly relevant. 

CONCLUSIONS AND RECOMMENDATIONS 227 NEEDED RESEARCH Conclusions There are several distinct and substantial bodies of research relevant to young children with autistic spectrum disorders. One body identifies neurological, behavioral, and developmental characteristics. Another body of research addresses diagnostic practices and related issues of prevalence. Another has examined the effects of comprehensive early treatment programs on the immediate and long-term outcomes of chil- dren and their families. These treatment studies tended to use some form of group experimental design. An additional body of research has ad- dressed individual instructional or intervention approaches, with many studies in this literature using single-subject experimental methodology. Altogether, a large research base exists, but with relatively little integra- tion across bodies of literature. Highly knowledgeable researchers in one area of autistic spectrum disorders may have minimal information from other perspectives, even about studies with direct bearing on their find- ings. Most researchers have not used randomized group comparison de- signs because of the practical and ethical difficulties in randomly assign- ing children and families to treatment groups. In addition, there have been significant controversies over the type of control or contrast group to use and the conditions necessary for demonstrating effectiveness. Al- though a number of comprehensive programs have provided data on their effectiveness, and, in some cases, claims have been made that certain treatments are superior to others, there have been virtually no compari- sons of different comprehensive interventions of equal intensity. Across several of the bodies of literature, the children and families who have participated in studies are often inadequately described. Stan- dardized diagnoses, descriptions of ethnicity, the social class, and associ- ated features of the children (such as mental retardation and language level) are often not specified. Fidelity of treatment implementation has not been consistently assessed. Generalization, particularly across set- tings, and maintenance of treatment effects are not always measured. Though there is little evidence concerning the effectiveness of discipline- specific therapies, there is substantial research supporting the effective- ness of many specific therapeutic techniques. Recommendations 7-1 Funding agencies and professional journals should require minimium standards in design and description of intervention projects. All intervention studies should provide the following information: 

228 EDUCATING CHILDREN WITH AUTISM a. Adequate information concerning the children and fami- lies who participated, and who chose not to participate or with- drew from participation, including chronological age, develop- mental assessment data (including verbal and nonverbal IQ levels), standardized diagnoses, gender, race, family characteris- tics, socioeconomic status, and relevant health or other biological impairments; b. description of the intervention in sufficient detail so that an external group could replicate it; detailed documentation is crucial especially if no treatment manual is available; c. fidelity of treatment and degree of implementation; d. specific objective measures of expected outcomes, assessed at regular intervals; and e. measures of outcome that are independent of the interven- tion, in terms of both the evaluators and the measures, and in- clude broad immediate and long-term effects on children and families, particularly generalization and maintenance effects. 7-2 Funders and performers of research should recognize that valu- able information can be provided by a variety of approaches to research in intervention, including group experimental and single-subject designs. 7-3 In order to help educators and consumers make informed deci- sions about appropriate methods of intervention for particular children, federal agencies involved in autistic spectrum disorders initiatives (including the Office of Special Education Programs, the Office of Educational Research and Improvement, the Na- tional Institute of Child Health and Human Development, the National Institute of Mental Health, the National Institute of Neu- rological Disorders and Stroke, and the National Institute on Deaf- ness and Other Communication Disorders) and nonprofit agen- cies with similar national missions (such as Autism Society of America Foundation, Cure Autism Now, and National Alliance for Autism Research) should form a research task force and spe- cifically allocate federal responsibilites for recruiting and funding a comprehensive program of research related to intervention and treatment. This program should include: a. development of more specific, precise measures of impor- tant areas of outcome, such as social functioning, peer relation- ships, spontaneous communication and language, and the acqui- sition of competence in natural contexts (e.g., classroom, home); 

CONCLUSIONS AND RECOMMENDATIONS 229 b. definition of appropriate educational skills and sequences in social and cognitive development, informed by normal devel- opmental literature; c. measurement of the effects of the interactions between fam- ily variables (e.g., family structure, family supports, socioeco- nomic status), child factors (such as degree of language impair- ment), and responses to educational interventions (including family-centered, parent training, and other approaches) on out- comes. d. longitudinal treatment studies, where feasible, built on a clinical model with randomly assigned samples of sufficient size to assess the effectiveness of differing modes of treatment. 7-4 Treatment studies should recognize the common components of many comprehensive programs (e.g., standardized curriculum, family training, presence of typically developing peers) and should target and measure, longitudinally when feasible, “active ingredients” and mediating variables that influence the effects of intervention (e.g., communication and interaction opportunities for engagement, levels of interaction and initiation, specific teach- ing techniques, proportion of time in close proximity of peers). The concomitant development of innovative treatments building on these “active ingredients” should be supported. 7-5 In response to amendments in IDEA to make education more outcome oriented, a federal initiative should solicit and fund stud- ies in the following areas, not easily supported under the current review system: a. the development of instruments for measurement of diag- nosis and critical aspects of development, particularly tools for early screening of autistic spectrum disorders and for measure- ment of response to interventions; b. the development and application of sophisticated statisti- cal methods of analysis of change and growth, particularly multi- variate designs and those applicable to small samples; and c. the development and dissemination of novel research de- signs that combine individual and group approaches in ways that minimize biases and maximize the power of small samples. 7-6 Competitively funded initiatives in early education in autistic spectrum disorders should require plans and contain sufficient funding for short- and long-term assessment of child outcomes and measures of program efficacy. 

Autism is a word most of us are familiar with. But do we really know what it means?

Children with autism are challenged by the most essential human behaviors. They have difficulty interacting with other people—often failing to see people as people rather than simply objects in their environment. They cannot easily communicate ideas and feelings, have great trouble imagining what others think or feel, and in some cases spend their lives speechless. They frequently find it hard to make friends or even bond with family members. Their behavior can seem bizarre.

Education is the primary form of treatment for this mysterious condition. This means that we place important responsibilities on schools, teachers and children's parents, as well as the other professionals who work with children with autism. With the passage of the Individuals with Disabilities Education Act of 1975, we accepted responsibility for educating children who face special challenges like autism. While we have since amassed a substantial body of research, researchers have not adequately communicated with one another, and their findings have not been integrated into a proven curriculum.

Educating Children with Autism outlines an interdisciplinary approach to education for children with autism. The committee explores what makes education effective for the child with autism and identifies specific characteristics of programs that work. Recommendations are offered for choosing educational content and strategies, introducing interaction with other children, and other key areas.

This book examines some fundamental issues, including:

• How children's specific diagnoses should affect educational assessment and planning
• How we can support the families of children with autism
• Features of effective instructional and comprehensive programs and strategies
• How we can better prepare teachers, school staffs, professionals, and parents to educate children with autism
• What policies at the federal, state, and local levels will best ensure appropriate education, examining strategies and resources needed to address the rights of children with autism to appropriate education.

Children with autism present educators with one of their most difficult challenges. Through a comprehensive examination of the scientific knowledge underlying educational practices, programs, and strategies, Educating Children with Autism presents valuable information for parents, administrators, advocates, researchers, and policy makers.

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Autism and Disability Advocacy Essay

When most people hear the term autism, they envision a “special” person with a developmental disorder who requires special treatment. Autism is a complicated neurological disorder that impairs a person’s ability to communicate, interact with others, and engage in appropriate behavior. People with autism frequently struggle to communicate, interact with others, and engage in appropriate behavior. Autism victims could find it difficult to react to their name, make eye contact, or utilize language properly. Autism is a disorder with a broad spectrum, which means that its manifestation and severity can vary greatly from person to person. Golson states that some characteristics of autism are shared, such as difficulty communicating, impaired social interaction, repetitive behaviors, and restricted interests (15).

People with autism can contribute to the diversity of disability culture by expanding understanding of what disability is and how it can be accepted. Autism Spectrum Disorder representation in the media can also help to reduce stigma and misconceptions about the condition while also providing role models and people to look up to. We can help to create a more accepting and understanding public perception of autism by highlighting its positive aspects.

According to the Centers for Disease Control and Prevention, the prevalence of autism is estimated to be 1 in 68 children who have been identified with Autism Spectrum Disorder (ASD) (Centers for Disease Control and Prevention, 154). It is estimated that there are around 3.5 million people living with autism in the United States (Golson 25).

Autism’s Influence on Disability Advocacy and Relationships

People with autism frequently struggle to express their needs, form relationships, and participate in activities. As a result, they might require assistance in advocating for their rights or forming meaningful relationships. Disability advocacy is critical in assisting people with autism in obtaining the assistance they require to live meaningful lives. Autism advocates can assist people with autism in gaining access to services, obtaining accommodations, and participating in their communities. They can also help you build relationships with your peers, family members, and professionals.

Autism symptoms normally start to show up in young children, and diagnosis is usually made by the age of two. Early diagnosis is critical because it allows families to gain access to the resources they require to support their child. Early intervention services can assist autistic children in developing language, social, and self-help skills. The most typical signs of autism include difficulties interacting with others, communicating verbally and nonverbally, and forming connections. Additionally, research suggests that environmental factors, such as exposure to certain toxins, may also play a role in the development of autism (DeVito and Kelleher 100). Restrictive interests, repetitive habits, and sensory sensitivity are further characteristics of people with autism (DeVito and Kelleher 50). Organizations like Autism Speaks have been created to advocate for the rights of people with autism and raise awareness of the issue in order to help combat it. Through advocacy, people with autism can get the help they require to lead satisfying lives.

Autism has connections to many different areas of disability studies. The model of disability, which sees disability as a social construct, is its closest relative. This is why parents are so important in the field of disability studies; they are often the ones best able to understand and support their child’s unique needs. Parents can work more effectively to create an environment in which their child can thrive if they understand the Model of Disability. Nevertheless, despite these challenges, people with autism can establish relationships and parent successfully (Maddox and Valerie 15). With the correct support, people with autism can learn the social and communication skills necessary to create enduring connections. Additionally, parents of children with autism can find the information and tools they need to comprehend their children’s needs and manage challenging behaviors. People with autism are frequently the targets of stigma and prejudice because they are frequently perceived as “abnormal.” This viewpoint assumes that people with autism have a “deficit” that must be “corrected,” rather than embracing their strengths and differences. This perspective suggests that people with autism should be accepted and accommodated, rather than “fixed” (Maddox and Valerie 17).

Autism also relates to the topic of disability advocacy. Making an inclusive atmosphere where people with autism can thrive is essential to autism advocacy. This entails creating a space where people with autism are welcomed and respected, as well as making accommodations to ensure their safety and comfort. This could include providing a quiet space for those who require it, having visuals or other sensory aids on hand, and giving people access to resources and support. Access to resources, such as educational and therapeutic services, as well as support and understanding are all part of this (Hong 100). Additionally, people with autism frequently need assistance with their jobs, relationships, and parenthood. As a result, it’s critical to offer tools and assistance so that people with autism can fulfill their potential and live happy, satisfying lives (Hong 89).

To summarize, autism is a spectrum disorder that affects communication and social interaction. The medical and social models of disability offer different perspectives on autism, and it is critical to seek out accurate representations of autism in media. People with autism may struggle to form relationships, so it is critical that they have access to support networks. Autism advocates should focus on creating an inclusive world that values the unique abilities and strengths of people with autism. People with autism may have difficulty finding and keeping jobs, and employers should make reasonable accommodations to ensure that people with autism can perform their jobs to the best of their abilities.

Works Cited

Golson, Megan. “Current state of autism knowledge in the general population of the United States.” Research in Autism Spectrum Disorders 90 (2022): 101886.

Maddox, Brenna B., and Valerie L. Gaus. “Community mental health services for autistic adults: Good news and bad news.” Autism in Adulthood 1.1 (2019): 15-19.

DeVito, Jennifer and Kelleher, Robert. “Autism: Overview and Diagnosis.” American Family Physician , vol. 99, No. 2, 15 July 2018, pp. 99-106.

Hong E.R. “Self-paced and video-based learning: parent training and language skills in Japanese children with ASD.” Exceptionality Education International 28.2 (2018).

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Bibliography

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• Autism Spectrum Disorder
• Autism Spectrum Disorder Prevalence and Impact in Society
• Autism Spectrum Disorder (ASD)
• Autism: Pathogenesis and Intervention
• Autism Spectrum Disorder and Interventions
• Autism: Characteristics, Prevalence and Interventions
• Aspects of Autism Spectrum Disorder
• Autism and Educational Process
• Bullying and Autism Spectrum Disorder
• Autism Spectrum Disorders and Educational Interventions
• The Spinal Cord Injuries and Nursing Practices
• Dementia in Older Adults: Effects and Prevention
• Hemorrhagic Stroke: Cholesterol Plaques and Blood Clots
• Use of Neuroleptic Drugs: Complications
• Migraine: Characterization and Diagnosis

Autism : a Neurological Disorder

This essay about the complexity of Autism Spectrum Disorder (ASD) explores the multifaceted nature of the condition, emphasizing its diverse presentations and the importance of understanding and embracing neurodiversity. It highlights the intricate interplay of genetic, environmental, and neurological factors contributing to ASD while challenging deficit-focused perspectives with a strengths-based approach. Through discussions of social communication, sensory sensitivities, and behavioral patterns, the essay underscores the need for society to shift towards acceptance and inclusion, celebrating the unique talents and perspectives of individuals with autism. By reframing the discourse surrounding autism and advocating for neurodiversity, the essay envisions a more equitable and compassionate future for individuals on the spectrum.

How it works

Autism, a puzzle that intrigues scientists and embraces humanity with its diverse colors, presents itself as a mosaic of neurological intricacies. This enigmatic condition, far from a monolithic entity, unveils a kaleidoscope of individual experiences, each tinted with its own blend of challenges and strengths. As researchers delve deeper into its mysteries, the canvas of autism emerges as a vibrant tapestry woven with threads of genetic predispositions, environmental influences, and intricate neurological patterns.

At its heart, autism manifests as a symphony of social nuances, sensory intricacies, and behavioral divergences.

The spectrum encompasses a vast array of presentations, from individuals who excel in specific domains to those who grapple with profound challenges in daily life. Struggles with social communication, sensory sensitivities, and rigid routines are common motifs, painting a portrait of the diverse ways in which autism shapes perception and interaction with the world.

Contrary to antiquated notions of deficit-focused paradigms, the narrative of autism is undergoing a paradigm shift towards a strengths-based perspective. Embedded within the tapestry of autism are threads of brilliance and resilience, weaving together tales of exceptional memory, keen attention to detail, and boundless creativity. By reframing the discourse to highlight the unique talents and perspectives of individuals with autism, society can embrace neurodiversity as a source of enrichment and innovation.

Central to the evolving discourse surrounding autism is the principle of neurodiversity, which advocates for the recognition and celebration of neurological differences. Rather than pathologizing deviations from the norm, the neurodiversity paradigm invites us to embrace the diversity of human cognition and experience. By fostering environments that prioritize acceptance, accommodation, and inclusion, we can cultivate a more equitable society that honors the inherent worth and dignity of all individuals.

In essence, autism beckons us to embark on a journey of discovery and understanding, inviting us to unravel the complexities of the human mind and celebrate the richness of diversity. By embracing the mosaic of autism with open minds and compassionate hearts, we can forge a path towards a more inclusive and empathetic society—one where every individual is valued for their unique contributions and celebrated for the vibrant tapestry of humanity they embody.

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"We tried putting Percy in a special education-only environment, as the district recommended," writes Cassie Hauschildt. "It backfired." (Hill Street Studios / Getty Images)

The IEP recommended a special education classroom. We chose an inclusion school.

Many educators saw a kid who was too hard and whom they could not support. but my son is so much more than his non-verbal autism diagnosis..

Every year, on the first day of school, we take a picture of my now five-year-old son, Percy, by a chalkboard documenting his age, grade, interests, and more. I’m sure you’ve seen these pictures flood your Instagram every September.

In the blank for “when I grow up, I want to be,” most parents I know write in “teacher” or “firefighter,” as dictated by their child. But for my son, I write “an adult” because my dream has always been for him to someday be independent and live his life the way that he wants.

Percy has moderate-to-severe autism spectrum disorder and has struggled his whole life to express himself, often lashing out physically in his frustration. Until last fall, he was entirely non-verbal.

My family and I have centered our lives around finding Percy the support he needs — from therapies for him to parenting classes for us. Yet, when it came to finding a school for Percy, we could not find one that wanted him and his diagnosis. The local school district gave him an IEP with no general education inclusion, and some local charters related that they had limited ability to serve Percy’s needs.

Educators saw a kid who was too hard, who lashed out, and whom they could not support.

Yes, Percy has behavioral issues, and I will be the first to tell you that it is not always easy to get him to do things. But Percy is so much more than just his autism diagnosis. He is also incredibly gifted and talented.

Around his fourth birthday, Percy started reading books and spelling words (in writing) at a breakneck pace. Going from knowing his alphabet to spelling more than 30 words on his own, Percy made it very clear that he was smart, capable, and really loved to learn. He especially loved to learn about the planets. Communicating with his talking tablet, he could name all the planets and their moons in the correct order.

We tried putting Percy in a special education-only environment, as the district recommended. It backfired. He turned to self-harm, banging his head against the wall to communicate his frustration and lack of stimulation. Every single day, he sobbed as we wrestled him into the car. Percy’s love of learning faded, even at home, as he regressed deeper into himself and away from the world.

It wasn’t until I took a wrong turn one day as I drove home from work that I stumbled upon a sign for a new school called Rocketship Explore Elementary. When I got home, I Googled it, and one of the first things I found was talk of “meaningful inclusion” being central to the Rocketship charter network. Students with disabilities such as Percy’s spend part of every day in a general education classroom, with their own paraeducator if needed, and another part of the day in a classroom for students with disabilities.

I enrolled him, and one month in, it was clear that Percy was getting the individualized support he needed to succeed. Today, Percy eats lunch, has recess, learns phonics, and goes on field trips with his general education peers.

I am so proud of Percy. More importantly, he’s proud of himself.

Every morning, his school day starts with a high-energy, school-wide morning assembly the school calls “launch.” This used to be a little overwhelming for my sensory-sensitive son, so he would not always participate, because forced inclusion doesn’t help kids.

But recently, as we walked in, Percy didn’t go on his normal path to his classroom. He watched, observed, found where his homeroom class was sitting, and joined the other students. Never before would he think to himself, “Huh, everyone else is sitting, so I’m going to also.” On that day, though, he sat down and stayed seated until the other kids stood. He observed this behavior and stood on his own! This would have been unheard of just a few months earlier. But meaningful inclusion has meant Percy can join his neurotypical peers at his own pace.

I am so proud of Percy. More importantly, he’s proud of himself. It is a joy to see. And there are so many kids out there like Percy who just need to be seen for who they are, for their exceptional gifts, not just their most challenging behaviors, and to be supported in their learning.

By embracing neurodiversity and providing tailored support for diverse learners, schools can not only transform lives but also reshape the narrative surrounding students with learning and behavioral differences.

Next September, when I pull out that first day of school chalkboard, I think I’ll let Percy fill in that blank himself. Because I know now that he will get to grow up to be anything he wants to be.

Cassie Hauschildt is a mom of two kids living outside of Fort Worth, Texas. Her children attend Rocketship Explore Elementary .

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The experiences of families raising autistic children: A phenomenological study

Farzad faraji-khiavi.

1 Social Determinants of Health Research Center, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

2 Department of Health Services Management, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

Mansour Zahiri

Elham amiri.

3 Department of Rehabilitation Management, Rehabilitation Faculty, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

Behnaz Dindamal

Narges pirani.

4 Department of Health Services Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran

BACKGROUND:

Conditions and needs of autistic children have impacts on both the children and the family members who have crucial roles in raising the child. The prevalence of autism is increasing, and this fact makes it necessary to focus more on experiences of parents who have children with autism spectrum disorder (ASD). Hence, this study aimed to reflect the experiences of parents who have autistic children.

MATERIALS AND METHODS:

The present study was a qualitative research with phenomenology approach which was conducted using content analysis approach. Participants were 14 parents with ASD children in Ahvaz, and they were included based on purposive sampling method. To gather the required data, semi-structured interviews were formed. Data analysis was performed by Colaizzi's seven-step method.

Fifty-four conceptual codes were extracted from interviews of ASD children parents. Parents of these children had two main experiences: first family related and second education and treatment problems. Family problems included three categories (financial, psychological, and family relationships). Education and treatment was categorized into three (schooling, transporting, and quality in facilities).

CONCLUSIONS:

Problems mentioned by parents of autistic children highlight the need for providing training and counseling services as well as emotional supports from both society and government. Planning and implementing supportive plans empower parents to strategically face problems and eventually improve their life quality and mutual understanding.

Introduction

Autism spectrum disorders (ASDs) are a group of pervasive developmental disabilities known as the most prevalent, serious, and yet unknown disorders during childhood.[ 1 , 2 ] Children with ASD are identified by a range of problems in their emotional, physical, and interactional skills, daily routines and playing, language development and natural speech, as well as imitative ability.[ 3 ] ASD symptoms typically are apparent within the 1 st year of age; however, certain clinical diagnosis does not happen before age three.[ 4 ] Although there is little information about the certain cause of ASD,[ 5 ] some studies have found that ASD etiology is not just characterized by a unique factor instead environmental and genetic risk factors, or a combination of both factors, play roles in ASD etiology, however, just recently it is agreed that ASD is mostly caused by genetic factors.[ 6 ]

In the last two decades, the prevalence of ASD has remarkably increased.[ 7 ] It is estimated that ASD prevalence in 2014 was 2.24% which showed three times more than 2000 estimation.[ 8 ] In Iran, ASD prevalence among 5-year olds is estimated at 6.26 in 10,000.[ 9 ]

ASD can be seen among all races, ethnics and across all socioeconomic groups. The prevalence of ASD among boys is four times higher than girls,[ 10 ] but in girls, ADS is more comorbid with some diseases like epilepsy.[ 11 ] Increasing prevalence of autism requires more focus on experiences of these children's parents.[ 12 ] Special needs and conditions of autistic children influence not only the child but also family members who play roles in child development.[ 13 ] Families with ASD children are facing a wide range of stressful and challenging conditions such as unexpected disabilities, child's harmful behaviors, and behavioral disorders, difficulty in getting services, dilemmas in finding an effective treatment, and finally, restricted and dull interaction with other members of the society.[ 14 ]

The most stressful factor that parents with autistic children have experienced is limited acceptance of autistic behavior by society members and failure to receive social support.[ 15 ] Lack of such supports increases parents' stress level.[ 16 ] A fairly large number of studies confirm that mothers of autistic children face more challenges than mothers of other children with special needs, and have lower cognitive well-being[ 17 , 18 ] as well as suffer from more stress.[ 19 ]

A child with ASD may lead to several negative effects; parents feeling guilty, mothers quitting jobs to take care of the child, a low marital life quality, parents' depression and isolation feelings due to lack of time to spend for their personal needs.[ 20 ] In addition, these disorders also insert financial burden on families to cure and rehabilitate children.[ 21 ] In Asian countries, the cost of treatment and care for such children is about 70% of an officeholder.[ 22 ] It is obvious, without instructing and supporting families, their resources (money, energy, time, and spirit) may decrease day by day.[ 14 ]

Based on what went on, identifying ASD parents' problems and needs is crucial due to the impacts of ASD on children and their families, increasing prevalence of the disease, and the fact that autism is a lifetime disorder. Furthermore, Khuzestan province and its capital city, Ahvaz, is one of the autism centers in Iran, yet no comprehensive study has been done on these issues. Therefore, this study was conducted for the first time in Khuzestan province, although it was previously conducted in some other provinces of Iran. Considering multicultural context of this province, high prevalence of ASD, and scattered ASD centers, this study aimed to reflect the Experiences of families with ASD children in Ahvaz.

Materials and Methods

This study was a qualitative research with phenomenology approach which was conducted using content analysis approach.

Participants

Participants were 14 parents with ASD children in Ahvaz. Participants were included based on purposive sampling method, and they were added until data saturation point was obtained. Inclusion criteria were: living autistic child with family, the ability to speak Persian, and consent to participate in the study. Exclusion criteria also included: The family has another autistic child and the child has another physical or mental illness.

Data collection

To gather the required data, semi-structured interviews were formed. Participants answered questions such as: “Do you have financial problems because of your child's illness?” “Do have affected care of your child on marital status?” or “Do you have depressing during in this time?”. The time and place of the interviews were confirmed by the participants; in average, each interview lasted for 90 min ranging 60–120 min regarding each participant's condition. They were informed about the aims of the study, and participants' consent forms were collected. All the interviews were recorded and completed during 3 months (September 22 to December 20, 2018).

Data analysis

All the interviews were transcribed by two of the researchers; the data were analyzed through seven-step Colaizzi's method. (1) Manuscripts of interviews were read several times by research team, (2) Significant statements which were directly related to research subjects were identified, (3) Relevant meanings were extracted and formulated from significant statements, (4) Identified meanings were clustered into categories and themes, (5) An exhaustive description was developed about experiences of families with autism children (6) Fundamental structure of the studied phenomenon was produced, and (7) Fundamental structure verification was sought through asking participants about final categorizations.[ 23 ]

In addition to check the trustworthiness of the data Lincoln and Guba's four-criteria (credibility, dependability, confirmability, and transferability) was used.[ 24 ] The validity of findings increased by means of Investigator Triangulation.

Ethical issues

When the study received ethics code (IR.AJUMS.REC.1397.591) from the Research Ethics Committee of Ahvaz Jundishapur University of Medical Sciences, the researchers were introduced to associated places (ASD care centers, clinics, and households of children with ASD). The participants were informed about the aims of the study and confidentiality of interviews.

The following sections present information related to participants' related demography as well as main themes and sub-themes.

Participants' demographic information

Participants' ages ranged from 20 to 40. They all had office jobs. Half of the parents had two or three kids. Most of them had average and above-average financial status.

In this study, six subthemes were extracted from two main themes based on parents views and included family problems (financial problems and resulting obstacles, parents' psychological and mental problems, marital problems and siblings' relationships), ASD children's education and treatment (problems related to autistic children's education, parents and children transportation problems, and clinic-related problems). Codes (conceptual units) related to each theme are presented in the following table.

Family problems

Totally, parents of children with ASDs mentioned 27 problems which were classified into three subthemes of financial problems and resulting obstacles, parents' psychological and mental problems, marital problems, and siblings' relationships [ Table 1 ].

Family problems in experienced life of Autism spectrum disorder children parents

ASD=Autism spectrum disorder

Most parents mentioned high treatment prices as the most serious problem. Sometimes treatment process was negatively influenced because they could not afford to pay it. Some complain of the costs and insurance policies: “Costs are absolutely pressing us, insurances just cover some parts of the treatment cost” (Participant 3). Other parent mentions a point: “The costs are too high. We have to cut off our other costs to pay for the treatment. We do not spend any more for ourselves; we cannot” (Participant 6)! Another parent limits services as much as possible: “To tell the truth, I cannot afford to send him to speech therapy class; I do the training at home” (Participant 2).

All participants had experienced stress and anxiety feelings. Some of them believed they cannot be happy anymore due to current concerns. Such depressions affected some parents so deeply that they could not pass denial phase. In addition, suicide intention was mentioned by some other interviewees. Some parent feels he even does not have time for himself: “Most of the time I feel depressed but I never had time to visit a psychologist” (Participant 3). Other one remembers: “It is difficult for his mother to accept her child's disease. When our son was two, she was under treatment for her depression” (Participant 7). One of interviewees basically denies problem in public while worries for his wife as well as himself: “I hate the name autism. Wherever I go they say it's autism. I say no. My child has delay in language. My wife is depressed. She says “I want to kill myself.” If I had not stopped her, she could have killed herself. One of my colleagues had a sick child. She went to a psychologist. She got pills. After a while her hands had tremors. I got scared. If I go to a psychologist, I will be affected to” (Participant 5).

Respondents believed child's disorders ended in emotional distance between parents and problems in marital life. Most mothers said they spend all their time and energy for their child with ASD and they have nothing more to spend for the typically growing child such as: “Most of my time is for this child (the autistic one), I have no time to play with the other one” (Participant 3). Some forget about their simple daily jobs: “Anyway, when I am doing my child's daily routines, I lose concentration. Well, for example, after a while you cannot iron your husband's clothes” (Participant 1), While they cannot take a break: “My husband says leave one of the children with me, and you and the other one go to your mom's home for a month, but I am scared to do it” (Participant 5).

Education and treatment problems

Twenty-seven problems were identified as education and treatment problems of children with ASD including problems related to autistic children's education, parents and children transportation problems, and clinic-related problems [ Table 2 ].

Education and treatment problems in experienced life of autism spectrum disorder children parents

As children with ASD have certain stereotypes, and their learning requires more time compared to typically developed children, parents reported problems related to ASD children's education. Although some parents mentioned the need of having a school for ASD children, some parents believed that such schools prevent children from learning social communication skills. A participant says: “I registered him in a private school. After 20 day teachers asked me to go to school. They said your son does not sit on his chair in the class and distracts other students. If he has problems take him to a psychologist” (Participant 5). Other parent recalls: “Once I took him to the kindergarten, the staff didn't let him in. They said your child has stereotypical behaviors. Other children may learn negative behaviors from him. In case of other families notice this, they will not bring their children to this kindergarten; as a result, we have to close the kindergarten” (Participant 3). A mother does not believe in special schools: “In an autism school, it is not possible for children to learn how to communicate with others because all of them are autistic children. Moreover, my child will learn other negative stereotypical behaviour like screaming” (Participant 1). Finally, we can hear from some other parent: “I do not allow my child go to a school where autistic children go. I will pay more money if I have to but I take him to an ordinary private school, because public schools do not register them at all” (Participant 7).

One of the problems that parents of children with ASD suffer from is transportation. Parents were dissatisfied with school buses which are over full. Some other mentioned restlessness and disquiet of the child in the buses as the other problem. A parent mentions: “My child does not sit in the bus. He is restless. Other mothers ask me: what is wrong with your kid? I don't send my child to school by bus because I have seen how drivers are treating children, it is very improper. In addition, kids are piled in the bus about twice of its capacity. All of these kids are aggressive; and I cannot send my child with them, no way. As a result, I have to get a taxi; and it is expensive” (Participant 3). A mother has a point: “As long as his speech has not improved I won't send him with strangers, because they may mistreat him or hurt him and he cannot tell me. There are things in Tehran (the capital city) that you cannot find here. There are special advantages in parking places for parents of ASDs children. I was fined several times because of parking place” (Participant 6).

Another point that parents mentioned was improper conditions of the clinics. Almost all participants were dissatisfied with quality of services in the clinics. Some complained trainers: “His tutors shout at him, this causes the child suffer from personality problems in the future. You have to search a lot to find a good-tempered tutor” (Participant 2). And others were expecting more from related facilities: “I am not satisfied with the facilities, neither private nor public facilities provide appropriate services. They don't have dark rooms. For such children they should have at least one dark room” (Participant 3), or: “It is very crowded here and children have behavioral problems. Once I suggested them to provide a playing room. So we can stay over there with our kids, when kids are restless. As a result, our children do not make noise and cause problems for other classes (and they did nothing)” (Participant 6). At last they try to compare it with other cities: “Compared to Tehran and other cities, Ahvaz facilities are in poor conditions. Hydrotherapy and play therapy places are very limited. The child's conditions do not improve in these contexts” (Participant 5).

The first problem that parents of ASD in this study suggested was financial problems. Studies have concluded expenses of families for children with ASD are up to three times more than typically developed kids as well as mentally and physically disabled children at the same age.[ 25 ] For participants, treatment costs and lack of insurance support were the biggest financial challenges. Sharp argues in his study that even if insurance companies cover medical tests related to diagnosis, they never pay for therapies for behaviors.[ 26 ]

It is suggested that financial supports from government and charities address such families, As Koohkan et al . found in a qualitative study, the role of various charities is very significant in access to financial support for families of sick children.[ 27 ]

In addition, providing a more comprehensive insurance coverage may reduce the total financial burdens of the families. Among all mental conditions that parents mentioned depression, anger, inability, suffer, and guilty feeling were the most repeated. The results of Poretemad et al . show that mothers with autistic children experience higher parental stress levels and this increases their anger.[ 28 ] As a response, it is suggested that autism schools and clinics may help families of children with ASD to face their conditions via setting training courses for decreasing psychological pressures, training effective confrontation, training life skills, and at the end managing anger as well as stress.[ 29 ] Dadipour et al . Also considered necessary the role of training courses and counseling for the mental health of families and their coping with the problems of the sick child.[ 30 ]

One of the results of the present study about the marital conditions of parents was couples' intention to divorce. Tensions of raising autistic children, and their behavior problems, increase the possibility of divorce.[ 31 ]

In line with the results of this study, Hartley et al . found that divorce rate among parents with autistic children is twice as much as it is for parents with normal children.[ 32 ] It seems provision of family consulting can help to restore and develop parents' relation.

Going to school can be considered as the beginning of a new kind of partnership between children with ASD and their parents to deal with special needs of family.[ 33 ] The results of the present study revealed lack of enough autism schools and low educational quality in these schools are pressing problems for training autistic kids. According to Balance et al ., parents with ASD children are always concerned about lack of necessary educational and health services in autistic schools.[ 34 ]

Another identified problem for parents in this study was using public transportation systems for autistic children and their presence in public. Although parents mostly pointed that conditions in other cities, namely Tehran, the capital, are better for children with ASD, the results of previous studies done in Tehran also suggested public transportation as one of the problems.[ 15 ]

It seems that allocating school buses and experienced drivers for transporting these children would be effective if required standards were considered, so that both parents and children benefit from relatively peaceful environment in vehicle as well as safety and security of the conditions. Parents questioned the poor quality of the services presented by the clinics. Ahmadi et al . in 2011 compared the needs of families with ASD children in Iran and Canada. Based on their study, there were three most common needs in special children's families: continuous services, professional expertise, and professional understanding.[ 35 ] These three and other needs in ASD remind us the crucial role of service quality in ASD children. It seems some comprehensive clinics need to be considered and established to provide a wide range of services for special children to meet their needs. Quality development programs may drive these facilities in delivering effective services along with other aspects of quality.

It is obvious that most of the identified problems and needs are not merely related to health field but address other sections; hence, health strategies do not solve the problem by itself. That is, problems, challenges, and meeting the identified needs and expectations of parents of children with ASD require multisector communications and cooperation.

Limitations of the study

Among the limitations of the present study was unwillingness of some families to mention their experience and problems. To encourage them to interview, the interviewers explained that their cooperation and participation may greatly help to identify their problems and try to solve them. In this way, they cooperated more consciously. Furthermore, this study was done in centers of Ahvaz; hence it needs to be cautious to generalize the results. Indeed, qualitative research may not be generalized. Similar research needs to be conducted in other provinces of Iran, then through a meta-analysis reveal the experience and general problems of these families for metropolitan and health policymakers.

Conclusions

Parents of ASD children had two main experiences: first family related and second education and treatment problems. Family problems included three categories (financial, psychological, and family relationships). Education and treatment was categorized into three (schooling, transporting, and quality in facilities). Health policymakers and other stakeholders need to support these families at least in three contact points: at home, school, and ASD facilities. Problems mentioned by parents of autistic children highlight the need for providing training and counseling services as well as emotional supports from both society and government. Planning and implementing supportive plans are necessary to empower parents to strategically face problems and eventually improve their life quality and mutual understanding. Considering the wide range needs of these families, it takes a multisector cooperation in order to provide them proper services and alleviate some of the burdens for families with ASD children.

Financial support and sponsorship

This study was financially supported by “Social Determinants of Health Research Center in Ahvaz Jundishapur University of Medical Sciences in Iran (Grant No.: SDH-9717).

Conflicts of interest

There are no conflicts of interest.

Acknowledgment

The research team appreciates managers of autism centers, instructors, and parents who helped to conduct this study. This study approved by Research Ethics Committee of Ahvaz Jundishapur University of Medical Sciences (Ethics Code: IR.AJUMS.REC.1397.591).

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Mental Health and Substance Use Disorders Often Go Untreated for Parents on Medicaid

By Emily Baumgaertner

For parents struggling with mental health or substance use disorders, access to treatment can often mean the difference between keeping and losing their children. But a new analysis of health and child welfare records found that a significant portion of those who were eligible for Medicaid coverage for such treatment were not getting it.

The analysis, published Friday by researchers at the nonprofit institute RTI International and the Department of Health and Human Services, found that fewer than half of parents on Medicaid who had substance use disorders and had been referred to authorities over suspicions of child abuse or neglect had received treatment.

Some Context: Experts say bad situations can often be reversed with treatment.

Both mental health and drug addiction crises have been roiling the country, and the effects of parental drug use and mental illness can quickly trickle down to their children . Public health experts say substance use disorders can incapacitate a previously diligent parent and lead to the involvement of child protective services.

In 2021 alone, more than seven million children were referred to authorities over worries of maltreatment, according to a federal report , and more than 200,000 were removed from their homes. But research shows that when parents seek treatment for psychiatric and substance use disorders , they are far less likely to experience family separation.

The Numbers: What the researchers found.

To calculate treatment rates among parents on Medicaid, the health insurance program for low income people, Tami Mark, a health economist at RTI, who led the research, and her colleagues drew from a new publicly available data set that used de-identified social security numbers to link child welfare records in Florida and Kentucky with corresponding Medicaid claims records from 2020.

For comparison, they also analyzed a random sample of Medicaid recipients who had no records in the child welfare system. (The study didn’t capture any counseling or medication given outside the Medicaid system, nor any cases of mental health or substance use disorders that were undiagnosed.)

Among 58,551 parents who had a child referred to welfare services, more than half had a psychiatric or substance use diagnosis, compared to 33 percent of the comparison group. About 38 percent of those with referrals who had mental health disorders and 40 percent of those who had substance use disorders had received counseling; about 67 percent of people with mental health disorders and 38 percent of those with substance use disorders had received medication.

Norma Coe, an associate professor of medical ethics and health policy at the University of Pennsylvania, who was not involved in the research, said some of the rates were worse than general Medicaid treatment figures , suggesting that some barriers could be specific to parents.

“In general, the U.S. supports parents and caregivers less than many other countries,” Dr. Coe said, “which has numerous and lasting intergenerational effects on health and wealth.”

What Happens Next: Examining the barriers.

The study’s authors highlighted an array of roadblocks to receiving counseling and medication, including stigma, inconvenience and the fear of losing parental rights.

They called for better coordination between social programs, such as integrating the data systems of child welfare and Medicaid so that it would be clear when parents needed to be connected to specific services.

But Dr. Steven Woolf, a professor of family medicine and population health at Virginia Commonwealth University who studies inequity, said there was another challenge: a shortage of treatment providers that will accept patients on Medicaid, which pays lower reimbursement rates than private insurers.

“Access to behavioral health services is inadequate in the United States,” he said, “but it’s even worse for Medicaid beneficiaries.”

Emily Baumgaertner is a national health reporter for The Times, focusing on public health issues that primarily affect vulnerable communities. More about Emily Baumgaertner