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Course: Pediatric Nursing

Topic: Nursing care of child with Autism Spectrum Disorder

The Nurses International Community

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COPYRIGHT

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Module Goals

Learners will be able to:

Define autism in children
Identify risk factors associated with autism
Identify common signs and symptoms of autism in children
Discuss diagnosis of autism in children
Describe evidence based management of children with autism
Explain the role of the nurse in caring for children with autism

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Autism Spectrum Disorder (ASD)

A diverse group of neurological and development conditions that affects how people interact with others, communicate, learn, and behave.
Referred as spectrum because of wide variation in type and severity of symptoms.
Can be diagnosed at any age.
Described as a “developmental disorder” because symptoms generally appear in the first two years of life.

CDC, 2022d

National Institute of Mental Health, 2022

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ASD: Other Names

Autism
Autism spectrum condition (ASC) used sometimes instead
Asperger's (or Asperger syndrome) – used sometimes to describe autistic people with average or above average intelligence

National Health Service, 2019

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ASD: Cause

There is no known causes of autism
Genetic condition
Scientists believe there are multiple causes of ASD that act together that affect an individual’s developmental growth
May affect people in the same family
May be passed on to a child by their parents

Centers for Disease Control and Prevention

CDC, 2022d

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ASD: Myths

Autism is an illness or disease
Autism is the same for everyone
Autistic children live short lives
Autism is caused by:

Bad parenting
Vaccines, such as the MMR- Measles Mumps and Rubella vaccine
Diet
An infection spread to other people

National Health Service, 2019

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ASD: Risk Factors

Environmental Factors
Biological Factors: Male child
Genetic Factors

Having a sibling with ASD
Having certain genetic or chromosomal conditions, such as fragile X syndrome or tuberous sclerosis
Experiencing complications at birth
Being born to older parents

Centers for Disease Control and Prevention, 2022d

National Institute of Environmental science, 2021

Contact info: info@nursesinternational.org

There is not just one cause of ASD. There are many different factors that have been identified that may make a child more likely to have ASD, including environmental, biologic, and genetic factors.

Although little is known about specific causes, the available evidence suggests that the following may put children at greater risk for developing ASD:

Having a sibling with ASD
Having certain genetic or chromosomal conditions, such as fragile X syndrome or tuberous sclerosis
Experiencing complications at birth
Being born to older parents
Male gender children are at the risk of having autism than female

What Environmental Factors May Be Associated With Autism?

Progress has been made toward understanding different environmental risk factors, and the clearest evidence involves events before and during birth, such as:

Advanced parental age at time of conception
Prenatal exposure to air pollution or certain pesticides
Maternal obesity, diabetes, or immune system disorders
Extreme prematurity or very low birth weight
Any birth difficulty leading to periods of oxygen deprivation to the baby’s brain

Air pollution: Researchers found early-life exposure to air pollution may be a risk factor for autism.

Children of mothers living near a freeway, and traffic-related pollution, during the third trimester of pregnancy were twice as likely to develop ASD. A distance of 1,014 feet, or a little less than 3.5 football fields, was considered near a freeway.
Children with a mutation in a gene called MET, combined with high levels of exposure to air pollution, may have increased risk.

Prenatal conditions and maternal factors: Problems with a mother’s immune system, certain metabolic conditions, or inflammation during pregnancy may be linked with higher autism risk for her children.

Some mothers of autistic children have antibodies, or proteins in the body that fight infection, that may interfere with their children’s brain development, possibly leading to autism.
Maternal diabetes or obesity are linked to increased likelihood of having a child with autism or other developmental disability.
Fever during pregnancy was associated with increased risk of autism for children

Metals, pesticides, and other contaminants: Prenatal and early childhood exposure to heavy metals, like mercury, lead, or arsenic; altered levels of essential metals like zinc or manganese; pesticides; and other contaminants cause concern.

Nutrition: Studies have found taking prenatal vitamins may help lower autism risk. Furthermore, research suggests taking vitamins and supplements might provide protective effects for those exposed to certain environmental contaminants during pregnancy.

Women were less likely to have a child with autism if they took a daily prenatal vitamin during the three months before and first month of pregnancy, compared to women not taking vitamins. This finding was more evident in women and children with genetic variants that made them more susceptible to developing autism.
Folic acid is a source of the protective effects of prenatal vitamins. Women who took the daily recommended dosage during the first month of pregnancy had a reduced risk of having a child with autism.

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Critical Thinking Question

During a focused group discussion, which of the following answers shows a false link to autism? (Select all that apply)

Autism is caused by Polio
Advanced parental age at time of conception may cause autism
Autism is caused by vaccines like MMR, DTaP, Hepatitis B
Autism is a genetic disorder that may pass from generation to generation
Taking prenatal vitamins may reduce the risk of autism

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ASD: Signs and Symptoms

According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), 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

National Institute of Mental Health, 2022

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ASD: Signs and Symptoms (Continued)

Social Communication and Interaction Skills

Individuals with Autism avoids or does not:

Make eye contact
Respond to name by 9 months of age
Show facial expressions(happy, sad, angry, and surprised by 9 months of age)
Play simple interactive games like pat-a-cake by 12 months of age
Share interests with others by 15 months of age (for example, shows an object that they like)

Center For Disease Control and Prevention, 2022b

National Institute of Mental Health, 2022

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ASD: Signs and Symptoms (Continued)

Individuals with Autism are unable to:

Share interests with others by 15 months of age (for example, shows an object that they like)
Point to show something interesting by 18 months of age
Notice when others are hurt or upset by 24 months of age
Notice other children and join them in play by 36 months of age
Pretend play by 48 months of age
Sing, dance, or act for parents/caregivers by 60 months of age
Use gestures by 12 months of age

Center For Disease Control and Prevention, 2022b

National Institute of Mental Health, 2022

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ASD: Signs and Symptoms (Continued)

Restricted or Repetitive Behaviors or Interests

Becomes upset by minor changes
Has obsessive interests
Must follow certain routines
Flaps hands, rocks body, or spins self in circles
Has unusual reactions to the way things sound, smell, taste, look, or feel

Center For Disease Control and Prevention, 2022b

National Institute of Mental Health, 2022

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ASD: Signs and Symptoms (Continued)

Restricted or Repetitive Behaviors or Interests

Lines up toys or other objects and becomes upset when their order is changed
Echolalia: Repeats words or phrases over and over
Plays with toys the same way every time
Is focused on parts of objects (for example, wheels)

Center For Disease Control and Prevention, 2022b

National Institute of Mental Health, 2022

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ASD: Signs and Symptoms (Continued)

Other related characteristics include:

Delayed language, cognitive or learning skills
Delayed movement skills
Hyperactive, impulsive, and/or inattentive behavior
Epilepsy or seizure disorder
Unusual eating and sleeping habits
Gastrointestinal issues (for example, constipation)
Unusual mood or emotional reactions
Anxiety, stress, or excessive worry
Lack of fear or more fear than expected

Center For Disease Control and Prevention, 2022b

National Institute of Mental Health, 2022

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Critical Thinking Question

Autism spectrum can be difficult to diagnose because it encompasses numerous symptoms of varying severity. Which of these behaviors should the nurse consider as a red flag for parents of a one-year-old child? (Select all that apply)

The child does not respond to their name
The child does not babble or coo
The child does not role play
The child does not wave, point, grasp
The child does not walk yet

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Strengths and Abilities of Autistic Children

Autistic people may display a range of strengths and abilities:

Learning to read at a very early age (known as hyperlexia)
Extraordinarily good memory, excellent sense of direction
Memorising and learning information quickly
Thinking and learning in a visual way
Logical thinking ability
May excel in academic areas such as science, arts, engineering and mathematics that do not heavily rely on social interaction

Altogether Autism, n.d.; NIMH, 2022

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Strengths and Abilities of Autistic Children

Autistic people may display a range of strengths and abilities that can be directly related to their diagnosis, including:

Being precise and detail oriented
Exceptionally punctual, honest and reliable and adhere to rules
Concentrate for long periods of time when motivated
A drive for perfection and order
A capability for alternate problem solving
A rare freshness and sense of wonderment

Altogether Autism, n.d.; NIMH, 2022

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ASD in Children: Assessments and Diagnostics

Can be reliably diagnosed by the age of 2, based on child’s developmental history and behavior
Diagnosis requires:

Developmental monitoring

Active and ongoing process of observing how the child grows
Whether child meets developmental milestones and skills: playing, learning, speaking, behaving, and moving

Developmental screening

Take a closer looks at the child’s development
Uses screening questionnaires and checklists
Done at recommended child visits, or when there is concern

Center For Disease Control and Prevention, 2022c

National Institute of Mental Health, 2022

Contact info: info@nursesinternational.org

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.

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 specializes in ASD.

A child’s caregivers may talk with these health care providers about the child’s social difficulties, including problems with subtle communication. These subtle communication differences may include 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.

https://www.nimh.nih.gov/health/publications/autism-spectrum-disorder

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Diagnosis of ASD in Younger Children

Stage 1: General Developmental Screening During Well-Child Checkups

The American Academy of Pediatrics (AAP) recommends

Developmental and behavioral screening at age of 9, 18, and 30 months
Screen specifically for ASD at age of 18 and 24 months

Stage 2: Additional Diagnostic Evaluation

Evaluation team may include child neurologists, developmental pediatricians, speech-language pathologists, child psychologists and psychiatrists, educational specialists, and occupational therapists

Center For Disease Control and Prevention, 2022c

National Institute of Mental Health, 2022

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Diagnosis of ASD in Younger Children

Stage 2: Additional Diagnostic Evaluation (Continued)

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
Blood tests and hearing tests

Center For Disease Control and Prevention, 2022c

National Institute of Mental Health, 2022

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Diagnosis of ASD in Older Children/Adolescents

Caregivers and teachers often first to recognize ASD symptoms in children attending school.
School’s special education team may perform initial evaluation, then recommend or refer to Primary health care provider or specialists for further diagnostic evaluation and management.
Caregiver/teachers/schools special education team may communicate child’s social difficulties, including problems with subtle communication with healthcare providers.

Center For Disease Control and Prevention, 2022c

National Institute of Mental Health, 2022

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Critical Thinking Question

During a prenatal class, a woman who is in her first pregnancy had conceived at the age of 34 asks the nurse what test is needed to rule out the diagnosis of autism for her child?

Double Marker tests
Triple Marker Tests
Ultrasound
No tests provide a diagnosis

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Child with ASD: Management

Early diagnosis of and interventions have shown to have major long-term positive effects on symptoms and later skills
Early interventions should occur at or before preschool age (age 2 or 3)
Early intervention programs:

Often include Family training, Speech therapy, Hearing impairment services, Physical therapy, Nutrition services
Goal is to help children gain basic skills that they usually learn in the first 2 years of life:

Physical skills, Thinking skills, Communication skills, Social skills, Emotional skills

Eunice Kennedy Shriver National Institute of Child Health and Human Development, 2021

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Child with ASD: Management (Continued)

There is no one standard treatment
Respond best to highly structured and specialized programs
Management at any age include following approaches:

Behavioral
Developmental
Educational
Social-Relational
Pharmacological
Psychological
Complementary and Alternative

Eunice Kennedy Shriver National Institute of Child Health and Human Development, 2021

CDC, 2022a

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Child with ASD: Management (Continued)

Behavioral approach (most evidence for treating symptoms of ASD)

Focuses on changing behaviors by understanding what happens before and after the behavior
Most notable approach is Applied Behavior Analysis

Improves a variety of skills by encouraging desired behaviors, and discouraging undesired behaviors

Developmental approach focuses on improving specific developmental skills

Often combined with behavioral approaches
Most common used for ASD is Speech and Language Therapy

Centers for Disease Control and Prevention, 2022a

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Child with ASD: Management (Continued)

Educational approach is used in classroom setting

Free education services or educational devices for ASD
Designed to meet a child's specific needs and skills
Minimize restrictions on the child's access to typical learning experiences and interactions
One-on-one, small group, and/or regular classroom instruction

Social-Relational approach focuses on improving social skills and building emotional bonds

Increase motivation, interest, and abilities to participate in shared social interactions, practice social skills, etc.

Eunice Kennedy Shriver National Institute of Child Health and Human Development, 2017

CDC, 2022a

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Child with ASD: Management (Continued)

Pharmacological approach

No medicine available to treat core ASD symptoms
Medicine may be prescribed to manage co-occuring symptoms

(high energy levels, inability to focus, anxiety, depression)

Psychological approach helps to cope with anxiety, depression, and other mental health issues

Cognitive-Behavior Therapy (CBT),widely used, helps change how one reacts to a situation

Eunice Kennedy Shriver National Institute of Child Health and Human Development, 2021

CDC, 2022a

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Child with ASD: Management (Continued)

Complementary and Alternative approach

Some individuals and parents use treatments that do not fit any of the other categories
Complementary and alternative approaches are often used to supplement more traditional approaches
Include:

Special diets, herbal supplements, chiropractic care, animal therapy, arts therapy, mindfulness, or relaxation therapies, etc.

Children (where appropriate) and parents should be informed to seek pediatric specialist advice before initiating above approaches

Center for Disease Control and Prevention, 2022a

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Children with Autism: Communication

Barriers to communication with children with autism:

May not be able to understand nonverbal communications

May not react to one’s smile or frown

They take things literally

One should be careful to say exactly what one mean

May only be able to handle one thought or idea at a time

Conversations should be focused and simple

May want to only talk about the one thing at a given time and talk about it over and over again
May see things differently than others

University of Rochester Medical Center Rochester, n.d.

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Communication Tips with Children with Autism

Be patient, slow down conversation to their speed, long pauses can help
Help them express anger without being too aggressive
Child may not respond

Do not take it personally as they have trouble both showing and controlling their emotions

They respond best to positive reinforcement, talk to them about or reward good behavior often

Be generous with compliments for good behavior

University of Rochester Medical Center Rochester, n.d.

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Children with Autism: Communication (Continued)

Ignore irritating attention-getting behavior

May act badly at times to get attention, avoiding this behaviour is often best way to prevent it

Interact through physical activity

Running around and playing outside may be a better way of sharing time together

Be affectionate and respectful, respect their personal space

Do not force physical affection to unwilling child

They need to know that they are loved

So express interest, caring, and support to them

University of Rochester Medical Center Rochester, n.d.

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Nursing Consideration in Children with Autism

Monitor development the child starting from initial contact
Provide parental education:

Monitoring child’s developmental milestones
When to seek advice from pediatrician or early childhood healthcare provider

If trained, conduct initial developmental screening using valid questionnaire/checklists at appropriate age
Early referral of suspected cases to developmental specialist

Center For Disease Control and Prevention, 2022c

National Institute of Mental Health, 2022

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Nursing Consideration in Children with Autism

Inform/educate parents about:

Recommended child visits with the specialist

Encourage to keep the appointments

Importance of early diagnoses and early interventions for ASD management
Safe administration of prescribed medications for co-occurring symptom management

Facilitate access to community resources for support and management of the child with autism:

Early interventions programs, assistive devices, support groups, pediatrician, social services available, etc.

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Critical Thinking Question

A mother whose 2 year old has been diagnosed with autism asks the nurse how her child can be cured. Which of the following responses would be the best response by the nurse?�

Autism can be cured by cognitive behavioral therapy
Certain medicines that affect neurotransmitters can cure autism
Brain surgery is a rare but possible option to cure autism
There is no cure for autism but early interventions can lessen the severity of symptoms

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Red Flags

Delayed language skills
Delayed movement skills
Delayed cognitive or learning skills
Hyperactive, impulsive, and/or inattentive behavior
Epilepsy or seizure disorder
Unusual eating and sleeping habits
Gastrointestinal issues (for example, constipation)
Unusual mood or emotional reactions
Anxiety, stress, or excessive worry
Lack of fear or more fear than expected

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Cultural Considerations

Some cultures may not recognize ASD as a disorder, and families prefer not to speak openly about it (Bernier et al., 2010). This delays diagnosing ASD early; therefore, some individuals are diagnosed at a later age (older children, adolescents, and adults)

To know more about the culture and ASD Please click here

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Cultural Considerations

Religion, culture, beliefs, and ethnic customs can influence how families understand and use health concepts:

There is often a barrier in cultures to talk about or treat autism

Health beliefs: In some cultures talking about a possible poor health outcome will cause that outcome to occur
Health customs: In some cultures family members play a large role in health care decision-making
Ethnic customs: Differing gender roles may determine who makes decisions about accepting & following treatment recommendations

AHRQ, 2020

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Cultural Considerations (Continued)

Religion, culture, beliefs, and ethnic customs can influence how families understand and use health concepts:

Religious beliefs: Faith and spiritual beliefs may effect health seeking behavior and willingness to accept treatment.
Dietary customs: Dietary advice may be difficult to follow if it does not fit the foods or cooking methods of the family
Interpersonal customs: Eye contact or physical touch may be ok in some cultures but inappropriate or offensive in others.

AHRQ, 2020

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References

Altogether Autism. (n.d.). Strengths and abilities in autism. https://www.altogetherautism.org.nz/strengths-and-abilities-in-autism/#:~:text=Having%20an%20extraordinarily%20good%20memory,regards%20to%20schedules%20and%20routines.

Bernier, R., Mao, A., Yen, J. (2010). Psychopathology, Families, and Culture: Autism. https://www.aacap.org/App_Themes/AACAP/Docs/resource_centers/cultural_diversity/competency_curriculum%20_cap_training/cases_supporting_materials/clinics/Bernier-psychopathology_families_and_culture-autism.pdf

Center For Disease Control and Prevention. (2022a, March 9). Treatment and Intervention Services for Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/treatment.html

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References

Center For Disease Control and Prevention. (2022b, March 28). Signs and Symptoms of Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/signs.html#:~:text=Autism%20spectrum%20disorder%20(ASD)%20is,%2C%20moving%2C%20or%20paying%20attention.

Center For Disease Control and Prevention. (2022c, March 31). Screening and Diagnosis of Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/screening.html

Centers for Disease Control and Prevention. (2022d, March 31). What is Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/facts.html

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References

Eunice Kennedy Shriver National Institute of Child Health and Human Development. (2017, January 31). Educational and School-Based Therapies for Autism. https://www.nichd.nih.gov/health/topics/autism/conditioninfo/treatments/educational-therapies

Eunice Kennedy Shriver National Institute of Child Health and Human Development. (2021, April 19). Early Intervention for Autism. https://www.nichd.nih.gov/health/topics/autism/conditioninfo/treatments/early-intervention

National Health Service. (2019, April 18). What is autism? https://www.nhs.uk/conditions/autism/what-is-autism/

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References

National Institute of Environmental science. (2021, August 31). Autism: Introduction. https://www.niehs.nih.gov/health/topics/conditions/autism/index.cfm

National Institute of Mental Health. (2022, March). Autism Spectrum Disorder: Overview. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd#part_2284

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