254. CCA Study Notes: Types and Causes of Developmental Disorders and Disabilities

The Big Picture

Developmental disorders and disabilities can affect how a person learns, communicates, moves, behaves, or manages daily life. The effects can range from mild to severe.

Some conditions are present at birth. Others can result from genetic changes, problems during pregnancy or birth, brain injury, disease, or other causes.

Each person has different abilities and support needs. When care is involved, the goal is often to support as much independence as possible while following the person’s care plan.

Look for Nova Scotia CCA Notes throughout this page for current provincial guidance.

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Course Notes: Key Ideas You Need to Know

What Is a Developmental Disability?

A developmental disability is a permanent disability that a person is born with or that begins before age 18.

Developmental disorders and disabilities include:

• Attention-deficit/hyperactivity disorder
• Autism spectrum disorder
• Cerebral palsy
• Down syndrome
• Epilepsy
• Fetal alcohol spectrum disorders
• Intellectual disabilities
• Spina bifida

A person can have more than one condition that causes disability.

Other Conditions That Can Lead to Developmental Disabilities

Acquired Brain Injury

An acquired brain injury involves damage to brain tissue. Possible causes include disease, medical conditions, accidents, drug overdose, and violence.

Brain injury can also happen when the brain receives too little oxygen. Examples include:

• Problems during birth
• Near-drowning
• Choking
• Suffocation
• Stroke

Other causes include meningitis, encephalitis, mercury poisoning, lead poisoning, toxic substances, drug overdose, and blows to the head.

Head injuries can occur through motor vehicle accidents, falls, sports injuries, or child abuse, including shaking.

Acquired brain injuries can be severe and permanent. Possible effects include:

• Personality changes
• Vision impairment
• Speech challenges
• Problems controlling muscles
• Intellectual disability

Congenital Heart Disease

Congenital heart disease involves problems with the structure or function of the heart that are present before birth.

Babies who survive may tire easily or have delayed growth. Most congenital heart conditions require surgical correction.

Fragile X Syndrome

Fragile X syndrome is the most common inherited ⓘ developmental disorder.

It is also identified as the most common known cause of autism spectrum disorder.

It is a genetic condition involving changes in the X chromosome. These changes prevent the chromosome from making a protein it would normally produce.

Some people carry a small gene change called a premutation without having symptoms.

Important numbers include:

• About 1 in 259 women carry the fragile X gene.
• A woman who carries the gene has a 50% chance of passing it to her children.
• About 1 in 800 men carry the gene.
• Men who carry the gene pass it to all their daughters but not their sons.

The gene can pass through generations without being noticed before a child develops the full mutation.

Both boys and girls can be affected, but boys are usually affected more severely. Most males with the full mutation have developmental disabilities. About one third to one half of girls have significant intellectual impairment.

One explanation being studied is that girls have two X chromosomes. If one is affected, they still have another X chromosome. Males have only one X chromosome.

Possible features of fragile X syndrome include:

• Learning or developmental disabilities
• Attention deficit and hyperactivity
• Anxiety
• Unstable mood
• Autistic behaviour
• A long face
• Large ears
• Flat feet
• Joints that extend farther than usual, especially the fingers
• Seizures, affecting about 25% of people with fragile X syndrome

Hydrocephalus

Hydrocephalus is a condition in which fluid collects in the brain.

Without treatment, the head can become enlarged and pressure on the brain increases. Intellectual disability and neurological damage may result.

Treatment can involve a shunt. A shunt is a long, flexible tube placed in the brain and connected to another body cavity, usually the abdomen or a chamber of the heart.

The shunt stays completely inside the body. It allows fluid to drain from the brain. Shunts usually remain in place for the person’s lifetime.

Phenylketonuria

Phenylketonuria, or PKU, is an inherited condition.

The body lacks an enzyme needed to process an amino acid called phenylalanine. When phenylalanine builds up in the blood, it damages brain tissue.

Untreated PKU can cause intellectual disability and neurological disorders.

PKU can be found through a blood test during the first few days of life. Proper treatment can prevent brain injury. Treatment includes following a strict diet throughout life.

In Canada, newborns are routinely tested for PKU.

Shaken Baby Syndrome

Shaken baby syndrome refers to physical and cognitive impairments caused by violently shaking a baby or young child.

Babies and young children have weak neck muscles. Violent shaking makes the head move back and forth with great force. The brain strikes the skull, which can cause bleeding behind the eyes and inside the brain.

Possible outcomes include:

• Permanent brain injury
• Seizures
• Partial or total blindness
• Paralysis
• Intellectual disability
• Death

Less violent shaking that happens repeatedly can also have long-term effects, including attention deficits and learning disabilities.

Attention-Deficit/Hyperactivity Disorder

Attention-deficit/hyperactivity disorder (ADHD) causes inappropriate levels of inattention along with hyperactive and impulsive behaviour.

Attention-deficit disorder, or ADD, and ADHD are grouped in the same category because their symptoms are similar.

Who Is Affected?

About 3 to 7% of school-aged children have ADHD. Some research has reported rates of 10 to 15% in larger cities.

ADHD has been reported to be about twice as common in boys as in girls. Some researchers suggest that girls may sometimes be overlooked because they may show more inattention than hyperactivity.

A child is more likely to develop ADHD when:

• A close biological family member has ADHD.
• The child has learning or communication challenges.

ADHD was once mainly viewed as a childhood disorder. Adults are also diagnosed with it. An adult who receives a new diagnosis likely had ADHD during childhood without being diagnosed.

True ADHD begins in early childhood and can be diagnosed before age 7. ADHD often continues as a child grows older.

Other conditions or events can produce symptoms that resemble ADHD, including head injury, hyperthyroidism, and seizure disorders.

Recognizing ADHD

ADHD symptoms:

• Continue over a long period
• Occur in more than one environment
• Are severe enough to interfere with everyday functioning

Hyperactivity can make a person seem as though they constantly need to move. The person may move frequently and make excessive noise.

Other possible symptoms include:

• Disorganization and difficulty completing tasks
• Difficulty sitting still
• Trouble following through on promises or commitments
• Difficulty organizing time and setting priorities
• Chronic lateness
• Saying things without considering whether the timing or comment is appropriate
• A tendency toward addictive behaviours
• Seeking excitement or high levels of stimulation
• Difficulty maintaining attention
• Becoming distracted easily
• Losing focus during reading or conversation
• Mood swings
• Becoming flustered or tense easily
• A short temper or history of explosive episodes

Impulsive behaviour means acting without thinking about the results first. This behaviour can lead to accidents.

Some people with ongoing problems involving attention, task completion, disruptive behaviour, social skills, or impulsivity may also have another disorder or mental health challenge.

For adults, ADHD can interfere with work and family functioning.

Treatment and Support

ADHD is considered a chronic condition with no cure. Treatment can help a person manage the condition.

Treatment may include:

• Medication
• Psychotherapy

Depending on the client’s situation, a support worker may encourage the client to keep a food diary to monitor whether preservatives or other food additives may be contributing to the client’s ADHD.

The client should receive assistance from a health care provider as soon as possible after diagnosis.

Autism Spectrum Disorder

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects communication and interaction with other people. It can also involve restricted and repetitive behaviours, interests, and activities.

ASD begins during early childhood, between 18 months and 3 years of age.

About 1 child in 94 in Canada is diagnosed with ASD. Boys are affected more often than girls.

How ASD Can Affect a Person

ASD involves a group of complex neurobiological conditions. These conditions can affect the normal functioning of several body systems, including the gastrointestinal, immune, hepatic, endocrine, and nervous systems.

ASD can affect normal brain development.

Possible effects include:

• Communication challenges
• Less interest in some activities
• Less willingness to participate in activities
• Difficulty with typical social interactions
• Repeated patterns of behaviour
• Difficulty with verbal communication
• Difficulty with nonverbal communication
• Difficulty understanding other people’s facial expressions
• Problems developing fine or gross motor abilities

ASD can range from mild to severe. Some people function well intellectually and at work while having difficulty with social interaction. Other people may have significant developmental delays and be unable to live independently.

Common Symptoms

Communication and social symptoms can include:

• Slow development of language or no language development
• Repeating words or phrases
• Difficulty starting or maintaining conversations
• Avoiding eye contact
• Spending time alone
• Not responding to other people
• Disliking cuddling

Behaviour and activity changes can include:

• Repetitive body movements, such as rocking, hand flapping, or finger flicking
• A short attention span
• Little reaction to pain
• Frequent tantrums without an apparent reason
• Strong attachment to one object, idea, activity, or person
• A strong need for routine
• Difficulty with change
• Lack of fear
• Being unusually active or unusually quiet
• Aggressive or violent behaviour
• Self-injury

People on the autism spectrum can have different combinations and degrees of symptoms. Treatment must therefore be based on the individual.

Supporting a Client With ASD

Care depends on the severity of ASD and the client’s needs. The goal is to help the client be as independent as possible.

CCA action: Maintain strict routines. Follow the client’s routine whenever possible because the client may become very upset if it is disrupted. Warn the client if the routine must be changed.

Some clients need help developing social and work skills. Some adults with ASD work and live independently. Others need help from family members, community services, group homes, or residential care facilities.

Children with ASD require careful supervision. Some clients should never be left alone because of safety concerns.

Follow the care plan: Use the client’s care plan to determine supervision needs. Some clients, especially children, may require constant supervision because they do not recognize dangers or may leave the home without understanding how to stay safe or return home.

There is no cure for ASD. Therapy can help some clients change or manage behaviours.

Possible therapies include:

• Behaviour modification
• Speech and language therapy
• Music therapy
• Auditory therapy
• Recreation therapy
• Sensory therapy

Behaviour modification uses rewards for positive behaviour and correction of negative behaviour to encourage social behaviours.

Cerebral Palsy

Cerebral palsy (CP) affects muscle control. It results from an injury or abnormality in the motor region of the brain.

Possible effects include:

• Involuntary movements
• Poor coordination
• Poor posture
• Muscle weakness
• Difficulty or inability to walk
• Difficulty or inability to speak

Causes and Risk Factors

CP can occur before birth, during birth, or shortly after birth.

The usual cause is a lack of oxygen to the fetal or newborn brain.

Infants at higher risk include those who:

• Are born prematurely
• Have a low birth weight
• Do not cry during the first 5 minutes after birth
• Need mechanical ventilation
• Have bleeding in the brain
• Have heart, kidney, or spinal cord abnormalities
• Have blood disorders
• Have seizures

An acquired brain injury during infancy or early childhood can also result in CP.

Types of Cerebral Palsy by Movement

Spastic Cerebral Palsy

Spastic cerebral palsy involves uncontrolled contraction of skeletal muscles.

The muscles contract or shorten and remain stiff instead of relaxing normally. One or both sides of the body can be affected.

Possible effects include:

• Problems with posture and balance
• Stiff, jerky movement
• Difficulty eating, writing, dressing, or completing other activities of daily living when the arms are affected
• Difficulty walking or moving when the legs are affected

Spastic CP is the most common form and accounts for about 50% of cases.

Athetoid Cerebral Palsy

Athetoid cerebral palsy causes difficulty controlling body movements.

The person can have constant, involuntary, slow, weaving, or writhing movements involving the:

• Trunk
• Arms
• Hands
• Legs
• Feet

The person may have difficulty reaching for objects, grasping them, sitting upright, or standing.

When the tongue, face, or neck muscles are affected, the person may drool or grimace.

Ataxic Cerebral Palsy

Ataxic cerebral palsy involves weak muscle tone and difficulty coordinating movement.

The person may look shaky or unsteady while walking and have difficulty maintaining balance.

Cerebral Palsy by Body Part Affected

• Monoplegia: One limb is paralyzed, usually an arm.
• Hemiplegia: One side of the body is affected, either the right arm and leg or the left arm and leg. The other side functions normally.
• Diplegia: Matching body parts on both sides are affected. With CP, this usually involves both legs while the upper body is unaffected. In rare cases, both arms are affected instead.
• Quadriplegia: Both arms and both legs are affected. The person cannot walk or use the arms. Facial and trunk movements are also commonly affected. Talking and eating can be difficult, and the person needs a wheelchair for mobility.

Other Effects of Cerebral Palsy

CP can be mild or severe.

Some people have awkward movements but can walk independently and do not have an intellectual disability.

People with more severe CP may also experience:

• Intellectual disability
• Learning disability
• Hearing impairment
• Speech impairment
• Vision impairment
• Difficulty swallowing
• Drooling because swallowing saliva is difficult
• Bladder or bowel control problems
• Seizures
• ADHD symptoms
• Breathing difficulty related to poor posture
• Pressure injuries caused by immobility

Supporting a Client With Cerebral Palsy

Care depends on the severity of CP and the individual client’s needs. The goal is to support as much independence as possible.

A support worker may assist with:

• Range-of-motion exercises
• Activities of daily living
• Reducing the risk of injury

Other support may involve physiotherapy, occupational therapy, speech therapy, eyeglasses, or hearing aids.

Surgery or medication to reduce muscle problems may also be ordered according to the client’s needs.

Down Syndrome

Down syndrome (DS) is a congenital disorder caused by an extra chromosome.

A person with DS has 47 chromosomes instead of 46. The extra chromosome results from an error during fertilization.

In Canada, about 15 babies out of every 10 000 births are born with DS.

Common Features

DS causes different degrees of intellectual disability, usually ranging from moderate to severe.

Physical features can include:

• A small head
• Oval-shaped eyes that slant upward
• A flat face
• A short, wide neck
• A large tongue
• A wide, flat nose
• Small ears
• Short stature
• Short, wide hands with stubby fingers
• Weak muscle tone

Many children with DS have congenital heart defects. Vision and hearing disorders are also common.

Other increased risks include:

• Ear infections
• Respiratory infections
• Thyroid gland problems

People with DS may begin showing symptoms of dementia after age 35. Alzheimer’s disease is commonly diagnosed when people with DS are in their 40s.

Supporting a Client With Down Syndrome

Care depends on the severity of DS and the person’s individual needs. The goal is to support as much independence as possible.

Early intervention programs ideally begin soon after birth. These programs help identify suitable ways to teach the child.

With good nutrition, sufficient physical activity, and consistent mental stimulation, many people with DS live well into their 60s.

Support workers work with the health care team and follow the client’s care plan.

The care plan may include:

• Encouraging activities recommended by physiotherapists, occupational therapists, and speech-language therapists
• Helping the client develop self-care skills
• Health and sex education
• Supporting a well-balanced diet and regular exercise to reduce concerns such as weight gain and constipation
• Routinely observing for and reporting signs of health problems related to DS according to the care plan

Epilepsy

Epilepsy is a condition involving recurrent seizures.

A seizure is a brief disturbance in the brain’s normal electrical activity. It can affect awareness, movement, and sensation.

Partial and Generalized Seizures

A partial seizure affects only one part of the brain.

A generalized seizure affects the whole brain.

The affected area temporarily loses its ability to function normally. The person’s reaction depends on the area of the brain involved.

Some seizures cause a person to stare briefly and appear unresponsive.

A tonic-clonic seizure can involve:

• Sudden, forceful muscle contractions
• Loss of consciousness
• Falling to the floor
• Jerking and twitching as muscle groups contract and relax
• Urinary incontinence
• Bowel incontinence

A tonic-clonic seizure usually lasts 1 to 7 minutes.

A Seizure Is Not Always Epilepsy

One seizure does not mean that a person has epilepsy.

A diagnosis of epilepsy requires recurring seizures. In epilepsy, the brain’s electrical system is permanently damaged and is susceptible to seizures.

Epilepsy can develop at any age, although children and young adults are commonly affected.

The cause is often unknown. Conditions that can cause epilepsy include:

• Cerebral palsy
• Intellectual disability
• Autism spectrum disorder
• Alzheimer’s disease
• Stroke
• Brain tumours
• Acquired brain injury

Severe epilepsy can limit a person’s activities. For example, frequent seizures may prevent someone from driving and can affect employment choices.

Treatment and Daily Life

There is no cure for epilepsy.

A physician may prescribe medication to prevent seizures. Medication controls seizures for many people, but it does not work for everyone.

Some people may require brain surgery to reduce how often seizures occur.

When epilepsy is controlled, it usually does not interfere with learning or the ability to perform activities of daily living ⓘ.

People with epilepsy have an increased risk of premature death. Risks include suicide, sudden unexplained death, and accidental death, especially drowning.

Supporting a Client With Epilepsy

Care depends on the severity of the epilepsy and the client’s needs. The goal is to support as much independence as possible.

Report: A support worker must observe and report all activity before, during, and after a seizure.

Call for help immediately when needed.

Clients who experience frequent or unpredictable seizures can be injured in a fall. Safety measures are required at home, work, during transportation, and during recreation.

Safety: A client must have close supervision whenever swimming, boating, or using a hot tub because of the risk of drowning.

If a seizure occurs:

1. Make sure nothing within the client’s reach can cause injury.
2. Do not hold the client down.
3. Keep track of how long the seizure lasts.
4. Notice which parts of the body are affected.
5. If the seizure continues for longer than 5 minutes, call the emergency medical service in your area.
6. After the seizure stops, place the client on the left side in case vomiting occurs.
7. Stay with the client until recovery.

Fetal Alcohol Spectrum Disorders

Fetal alcohol spectrum disorders (FASD) are a group of physical and mental abnormalities caused by alcohol consumption by the birth parent during pregnancy.

In Canada, one child is born with FASD each day. FASD is the most common preventable developmental disorder.

Physical Effects

Possible physical challenges include:

• Low birth weight
• Weak muscle tone
• Poor weight gain
• Heart disorders
• Hearing impairment
• Abnormalities of the spine and joints

Some people have characteristic facial features, including:

• An unusually small head
• Small eye openings
• A thin upper lip
• A small chin

Learning, Behaviour, and Daily Life

A child with FASD may have no obvious outward sign of disability.

Possible challenges include:

• Intellectual disability
• Poor attention span
• Hyperactivity
• Poor motor skills
• Slow language development
• Behavioural difficulties
• Learning difficulties
• Emotional difficulties

Older children and adults may experience:

• Memory impairment
• Poor judgement
• Difficulty with activities of daily living
• Difficulty managing anger
• Poor social skills
• Mental health challenges

Some adults with FASD work and live independently. Others require support from family members and community services.

A woman with FASD can have a baby without FASD if she does not consume alcohol during pregnancy.

Supporting a Client With FASD

FASD is lifelong.

Care depends on the severity of the condition and the client’s individual needs. The goal is to help the client become as independent as possible.

Early diagnosis and intervention are especially helpful.

Support can include:

• Building self-esteem by focusing on what the client can do
• Helping the client develop self-awareness
• Supporting daily skills such as cooking and hygiene
• Encouraging independence
• Helping the client learn ways to adapt to new situations
• Providing information about available programs and supports

Self-awareness can be helpful because some clients may overreact to ordinary stresses or feel different from other people.

Intellectual Disabilities

An intellectual disability, also called a cognitive disability, is an impaired ability to learn. It involves below-average intelligence and limitations in some areas of daily life.

A person with an intellectual disability can learn new skills, but usually learns them more slowly than average.

Possible difficulties include:

• Communication
• Self-care
• Social interaction

A former term for intellectual disability is now considered unacceptable in Canada.

Causes of Intellectual Disability

Intellectual disability can result from a genetic abnormality, injury, or disease that interferes with brain development.

A person with an intellectual disability may also have other disabilities.

Genetic Conditions

Possible genetic causes include:

• Abnormal genes inherited from one or both parents, including fragile X syndrome and PKU
• Missing or extra chromosomes, including Down syndrome

Conditions During Pregnancy

Possible causes during pregnancy include:

• Alcohol use
• Drug use
• Poor nutrition
• Exposure to environmental hazards such as X-rays or certain chemicals
• Rubella
• Syphilis
• Uncontrolled diabetes mellitus
• Human immunodeficiency virus, or HIV

Conditions at Birth

Possible causes include:

• Premature birth
• Low birth weight
• Lack of oxygen to the baby’s brain during birth

Conditions After Birth

Possible causes include:

• Whooping cough
• Chicken pox
• Measles
• Meningitis
• Encephalitis
• Acquired brain injury caused by accidents, disease, or abuse
• Severe malnutrition
• Neglect

Levels of Intellectual Disability

Intelligence quotient, or IQ, tests measure intelligence.

An average person without an intellectual disability has an IQ score of about 90 to 110.

Level	Supported description
Mild	IQ of 55 to 70. The person may learn slowly, attend regular school, work and live in the community as an adult, and need occasional support.
Moderate	IQ below 55. The person needs daily support at home and at work.
Severe	IQ below 25. The person needs constant support in all areas.

Rights, Relationships, and Community Life

People with intellectual disabilities should have opportunities to live meaningful and dignified lives and participate in community life.

Children should be able to live with families, attend regular schools whenever possible, and interact with children with and without disabilities.

Adults should be able to control their lives as much as possible. This includes making choices about their care and how they live.

They should also have opportunities to:

• Develop friendships
• Work
• Participate in adult activities
• Contribute to their communities

People with intellectual disabilities have sexual, emotional, and social needs and desires like other people. They have rights to privacy, relationships, love, and affection.

Some adults have partners. Some marry and have children.

Most people with intellectual disabilities can socially control their sexual urges. A small number may show sexual responses in inappropriate ways or places.

Children and adults with intellectual disabilities are vulnerable to sexual abuse.

Report: If you notice signs of sexual abuse in a client, report those signs immediately.

Children with intellectual disabilities need education about sexual abuse, safer sex practices, and other sexuality-related issues.

Supporting a Client With an Intellectual Disability

Care depends on the severity of the disability and the client’s individual needs. The goal is to promote as much independence as possible.

A care plan may include support with:

• Building work, volunteer, and daily living skills
• Creating personal life plans and working toward personal goals
• Participating in community classes
• Participating in recreation programs
• Maintaining social skills and physical health
• Hiring a support worker for personal care

Creating one’s own life plan and working toward personal goals is called person-directed planning.

When a person hires a support worker for their own care, this can help the person advocate for their care while also giving family members or caregivers respite ⓘ.

Spina Bifida

Spina bifida is a congenital disorder caused when the spine does not close properly before birth.

It is a type of neural tube defect, or NTD, and can range from mild to severe.

With neural tube defects, the brain, spinal cord, and their protective coverings do not fully develop. These defects occur during the first months of pregnancy.

Getting enough folic acid before conception and during early pregnancy greatly reduces the risk of having a baby with a neural tube defect.

Why Nerve Damage Can Occur

The vertebrae ⓘ normally protect the spinal cord.

With spina bifida, the vertebrae fail to close properly. This can leave the spinal cord unprotected.

The spinal cord contains nerves that carry messages between the brain and the rest of the body. Damage can prevent affected body parts from functioning normally.

Possible effects include:

• Partial or complete paralysis
• Loss of bowel control
• Loss of bladder control
• Infection of an exposed spinal cord

Spina bifida can develop anywhere along the spine. The lower back is the most common location.

Spina Bifida Occulta

Spina bifida occulta is the mildest type.

There is a small problem with closure of the vertebrae, but the spinal cord and its covering membranes remain in place.

Skin usually covers the defect, making it hidden.

A person may have a dimple or a tuft of hair over the area. The spinal cord and nerves are normal.

This type rarely causes disability and often causes no symptoms.

Possible problems include:

• Foot weakness
• Bowel disorders
• Bladder disorders

Spina Bifida Cystica

With spina bifida cystica, part of the spinal column forms a pouch or sac that sticks out through an opening in the spine.

A membrane or thin layer of skin covers the sac.

The sac can be injured easily, creating a risk of infection.

There are two types of spina bifida cystica.

Meningocele

A meningocele is a sac containing:

• Meninges
• Cerebrospinal fluid

Meninges are connective membranes that cover and protect the brain and spinal cord. Cerebrospinal fluid also protects the brain and spinal cord.

The sac does not contain nerve tissue. The spinal cord and nerves are therefore unaffected, and nerve damage usually does not occur.

The defect can be corrected through surgery.

Myelomeningocele

Myelomeningocele, also called meningomyelocele, is the most common and most serious form of spina bifida.

The sac contains:

• Nerves
• Part of the spinal cord
• Meninges
• Cerebrospinal fluid

Severe nerve damage occurs. The spinal cord is damaged or has not developed properly.

Function is lost below the level of the damage.

Common effects include:

• Paralysis of the legs
• Loss of sensation
• Loss of bowel control
• Loss of bladder control

The baby’s back is usually closed surgically soon after birth.

Some children and adults can walk using braces or crutches. Others need wheelchairs.

Other Conditions and Risks

People with spina bifida can also have challenges involving:

• Learning
• Attention
• Language
• Reading
• Mathematics
• Mobility

Other risks include:

• Obesity
• Gastrointestinal disorders
• Skin breakdown
• Depression
• Social concerns
• Emotional concerns
• Sexual concerns

Hydrocephalus often occurs with some types of spina bifida.

Supporting a Client With Spina Bifida

Care depends on the type of spina bifida and the client’s needs. The goal is to promote as much independence as possible.

There is no known cure for the nerve damage caused by spina bifida.

Surgery after birth is a standard treatment used to prevent further damage and infection.

Safety: When caring for someone with spina bifida cystica, be careful around the sac because the tissue can be fragile. An injury can lead to infection.

People with spina bifida may experience problems such as:

• Reduced ability or inability to walk
• Infection of the sac
• Bladder problems
• Bowel problems

Support care aims to prevent these problems or reduce their severity.

Depending on the person’s needs, ongoing treatment or surgery may involve a collaborative team that includes:

• Psychologists
• Occupational therapists
• Physiotherapists
• Urologists
• Neurosurgeons
• Orthopedists

Common Mix-Ups

Wrong Idea	Better Idea
One seizure means a person has epilepsy.	Epilepsy involves recurring seizures.
Everyone with cerebral palsy has an intellectual disability.	Some people with mild CP do not have an intellectual disability.
All forms of spina bifida cause severe nerve damage.	Spina bifida occulta may leave the spinal cord and nerves normal, while myelomeningocele causes severe nerve damage.
Everyone with ASD has the same symptoms and support needs.	Symptoms and their severity vary from person to person.