Life with Autism Spectrum Disorders
Introduction
Autism Spectrum Disorder (ASD) is one of the most confusing disorders for which not only no exact cause has been identified, but also no definitive cure has been found yet. Autism is a disorder that is usually observed on the child at an early age, affecting various developmental aspects. Its development is abnormal. It shows an imbalance in its social interaction, characterized by repetition of certain behavioral patterns and challenges in verbal and nonverbal communication with others. Over the last few decades, its prevalence showed a dramatic rise; an observation that encouraged many researchers across the globe to try to explore all its aspects from etiology to diagnosis and intervention. Because of the difficulties in managing children with autism, the families encounter many challenges and stresses.
What Is Autism?
Autism is a wide range or spectrum of brain disorders that is usually noticed in young children. Autism is also referred to as Autism Spectrum Disorder or ASD. Autism decreases the individual's ability to communicate and relate emotionally to others. This disability may range from mild to severe. Autism occurs about four to five times more often in boys than girls.
Is Autism a Disease or a Disorder?
Autism is a disorder, not a disease. There are many brain disorders that fall into the autism category such as autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified, and Asperger syndrome (Asperger's syndrome).
What Does "Spectrum" Mean?
"Spectrum" in autism spectrum disorder refers to the wide range of symptoms, skills, and severity of the disorder. The three most common disorders on the autism spectrum are autism, Asperger's syndrome, and pervasive developmental disorder- not otherwise specified.
What are the 5 Types of Autism?
Autism refers to a wide range of neurodevelopmental disorders. If your child is living with autism, it is important for you to understand the various types of autism and the symptoms presented by each.
Understanding the unique symptoms presented by each type of autism will guide you in helping your child cope with the disorder. There are five major types of autism which include Asperger’s syndrome, Rett syndrome, childhood disintegrative disorder, Kanner’s syndrome, and pervasive developmental disorder – not otherwise specified.
Main Types of Autism Spectrum Disorders
(1) Asperger’s Syndrome
Although the term Asperger’s syndrome was quite common before 2013, the term is actually no longer used by medical professionals. It has since been reclassified as level 1 autism spectrum disorder by the DSM-5 diagnostic manual. Still, Asperger’s syndrome may be used informally — in fact, autism communities use it more often than level 1 spectrum disorder.
A child with level 1 spectrum disorder will have above average intelligence and strong verbal skills but will experience challenges with social communication. In general, a child with level 1 autism spectrum disorder will display the following symptoms:
Inflexibility in thought and behavior
Challenges in switching between activities
Executive functioning problems
Flat monotone speech, the inability to express feelings in their speech, or change their pitch to fit their immediate environment
Difficulty interacting with peers at school or home.
(2) Rett Syndrome
Rett syndrome is a rare neurodevelopmental disorder that is noticed in infancy. The disorder mostly affects girls, although it can still be diagnosed in boys. Rett syndrome presents challenges that affect almost every aspect of a child's life. The good thing is your child can still enjoy and live a fulfilling life with the proper care. You can have family time together and provide support to allow the child to do what they enjoy.
Common symptoms of Rett syndrome include:
Loss of standard movement and coordination
Challenges with communication and speech
Breathing difficulties in some cases
Childhood Disintegrative Disorder (CDD)
(3) Childhood disintegrative disorder (CDD)
also known as Heller's syndrome or disintegrative psychosis, is a neurodevelopmental disorder defined by delayed onset of developmental problems in language, motor skills, or social function. A child experiences normal development in these areas only to hit a snag after age three and up to age 10. The developmental loss can be very heartbreaking for parents who had no idea their child had autism challenges all along.
The cause of CDD is unknown though researchers link it to the neurobiology of the brain. Childhood disintegrative disorder is more common in boys. Out of every 10 cases of the disorder, nine will be boys, and only one will be a girl.
In CDD, the child will have normal development up to the time when the disorder starts, and regressions suddenly start to occur in more than two developmental aspects of their life. The child may lose any of the following skills and abilities:
Toileting skills if they had already been established
Acquired language or vocabularies
Social skills and adaptive behaviors
Some motor skills
(4) Kanner’s Syndrome
Kanner’s syndrome was discovered by psychiatrist Leo Kanner of John Hopkins University in 1943 when he characterized it as infantile autism. Doctors also describe the condition as a classic autistic disorder. Children with Kanner's syndrome will appear attractive, alert, and intelligent with underlying characteristics of the disorder such as:
Lack of emotional attachment with others
Communication and interaction challenges
Uncontrolled speech
Obsession with handling objects
A high degree of rote memory and visuospatial skills with major difficulties learning in other areas.
(5) Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) is a mild type of autism that presents a range of symptoms. The most common symptoms are challenges in social and language development.
Your child may experience delays in language development, walking, and other motor skills. You can identify this type of autism by observing the child and noting what area the child displays a deficit in, such as interacting with others. PDD-NOS is sometimes referred to as “subthreshold autism,” as it is a term used to describe an individual that has some but not all symptoms of autism.
Signs of Autism in Toddlers
Autism can develop at various ages. Some infants may show early signs of autism while others may develop normally until 15 to 30 months. The Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) is a 2 stage screening tool for parents to assess their child’s risk for autism spectrum disorder. The M-CHAT-R/F provides a scoring sheet for parents to use after completing the assessment.
Autism Symptoms
The following are common symptoms of autism, but non-autistic children may display some of these behaviors:
Rocking, spinning, or other repeated movements
Avoiding physical contact
Avoiding eye contact
Rocking, spinning, or other repeated movements
Delayed speech development
Repetitive speaking of words or short phrases
Inability to cope with small changes in a daily routine
Limited or no interactions with peers
Signs of Autism in Babies
Early warning signs and symptoms of autism are recognizable. If parents or doctors are able to diagnosis autism as an infant, treatment can greatly improve a baby's brain. Signs of autism usually appear between 12 and 18 months, but parents should still be on the lookout for common autism symptoms. Early symptoms may be interpreted as signs of a well-behaved baby because they are quiet, independent, and undemanding.
Behaviors Associated with Autism in Babies
1- Will not make eye contact
2- Will not respond to parent’s voice
3- Will not babble (baby talk) or point by 1 year of age
4- Will not respond to their name
5- Will not smile or laugh in response to others behavior
Signs of Autism in Baby’s Second Year
As some autistic children reach age 2, they may regress or lose language skills. Others may simply have no words by 16 months or no two-word phrases by 2 years of age. Children may only speak the same words repeatedly or they may repeat what they hear verbatim. Other signs of autism are organizing toys in certain ways, as opposed to playing with them. They may also refrain from engaging in make-believe play or engaging with other children. Two-year-olds with autism may also be unable to recognize other people's feelings or facial expressions.
Other Signs of Autism
Other autism spectrum disorder symptoms are physical problems such as poor coordination while running or climbing, poor hand control, constipation, and poor sleeping. Some children develop seizures. Pica, or the tendency to eat items that are not food, is common in children and adults with autism.
How Is the Brain Affected By Autism Spectrum Disorder?
Children affected by autism have an excess of synapses, or connections between brain cells. This is because there is a shutdown in the normal pruning process that occurs during brain development. A typical pruning process involves eliminating about half of cortical synapses by late adolescence. Cortical synapses occur in the cortex, which is central to thought and processing information from the senses.
Some children with autism have larger than normal brains but findings are inconsistent. MRI scans of some children with autism show abnormal cortical responses and some show other abnormalities. Future advances in brain studies may change our understanding of the brain’s role in autism.
Early Screening for Autism Spectrum Disorder
Because autism spectrum disorders range from mild to severe, many children are not diagnosed early. Diagnosing autism may be difficult because there are no medical tests, such as blood tests, that can diagnose children. Therefore, treatments may be delayed for years. Autism can sometimes be detected in children 18 months or younger. Many pediatric doctors can diagnosis children by age 2.
Developmental screening for children is an efficient test to tell if they are learning basic skills when they should. During this exam a doctor might ask the parent some questions or talk and play with the child to see how he/she learns, speaks, behaves, and moves. All children should be screened during their 9-, 18- and 24-month well-child doctor visits. Older children are often screened if they seem to fall behind age-related developmental levels.
Autism Diagnosis: Speech Problems
During developmental screening, a doctor will observe how the baby reacts to the parent's voice, smile, and other stimuli and may ask a few questions about the child's reactions. The Communication and Symbolic Behavior Scale may also be used to evaluate a child's communication level and help decide if seeking professional care is necessary. Other tests that determine hearing, speech development, and behaviors may be completed to help distinguish autism from other developmental problems.
Autism Diagnosis: Poor Social Skills
A major part of the diagnosis of autism is determining social skills. Some features of many children with autism are their inability to look another person in the eye, even the eyes of their parents. Children with autism often focus on objects and do so intently, virtually ignoring other people or other stimuli for long time periods. If children with autism do communicate, it is often robot-like without facial expressions or gestures. Ages and Stages Questionnaires can be helpful in evaluating a child's communication, gross motor, fine motor, problem-solving, and personal adaptive skills.
Autism Diagnosis: Evaluation
Although there is no medical test for autism, a comprehensive diagnostic evaluation can help diagnose a child with autism. This evaluation may include looking at the child's behavior and development and interviewing parents. Hearing and vision screenings, genetic testing, and neurological testing may also be involved in a comprehensive diagnostic evaluation. Most clinicians accept the three criteria listed below for diagnosis:
Impairments in social interactions
Impairments in communication
A restricted and repetitive range of interests, behaviors, and activities
Autism Treatment: Behavior Programs
Treatment of autism is available. Behavioral therapy programs are available from several sources and they are designed to aid people in talking, communicating effectively, interacting with others, and avoiding negative or antisocial behaviors. Behavioral therapy uses positive reinforcement, self-help, and social skills training to improve behavior and communication.
Applied Behavioral Analysis (ABA) and Treatment and Education of Autistic and Related Communication (TEACCH) are treatments available for children with autism. The Autism Society maintains a website and offers a toll-free hotline (1-800-3-AUTISM/1-800-328-8476). This resource provides information and referral services to anyone who requests them.
Autism Treatment: Education
Treatment involves educating the child with autism spectrum disorder. The Individuals with Disabilities Education Act (IDEA) authorized states to determine how to provide educational services to children younger than 3 years of age. The Education for All Handicapped Children Act of 1975 requires free and appropriate public education for all children, regardless of the extent and severity of their handicaps.
Amendments to the Education of the Handicapped Act of 1986 extended the requirement for free and appropriate education to children aged 3 to 5 years. Parents are advised to check with their individual school administrators to determine what programs best fit their child.
Autism Treatment: Medication
Although there is no medical treatment for autism, there are treatments for some autism symptoms. You and your child's pediatrician should discuss medical therapy before it is administered to be sure the benefits outweigh any risks. The medical agents commonly used are antipsychotic agents like risperidone or aripiprazole. Drugs such as methylphenidate, fluoxetine, anti-seizure medications, and others may help specific symptoms. Close observation is required to monitor the child's response to any medication.
Autism Treatment: Sensory Integration
As previously described, children with autism spectrum disorder may be extremely sensitive to various sensory stimuli such as sounds, lights, textures, taste, and odors. Some children may become agitated by touching, hearing, or seeing specific things such as a bell, blinking lights, touching something cold, tasting certain foods, or smelling a specific odor like a disinfectant. Some children can be trained to adapt and thus improve behavior.
Sensory integration therapy assesses the way an individual’s brain processes sensory input. A sensory integration-trained occupational or physical therapist will evaluate the autistic child in order to create a plan that matches sensory stimulation with physical movement, which can improve how the brain processes and organizes sensory information.
Autism and Assistive Technology
Technology has recently given some children with severe autism (patients with autism who are nonverbal) ways to communicate. Assistive technology is any product, item, or piece of equipment that is used by a person with a disability to perform tasks, improve functional capabilities, and become more independent. The assistive technology may be a computer tablet, a computer, or even a phone app with programs especially designed to engage children with autism. For students with severe communication difficulties, a device with a speech-generating app or a speech generating device may be highly effective.
Autism and Diet
A balanced diet, along with some vitamin supplementation, is advised by clinicians for children with autism spectrum disorders. It is important to have a good diet as some patients show good improvement in symptoms when eating such a diet. Some patients with autism suffer from constipation and others may develop a habit of eating items like dirt or paper. A proper diet may help reduce these autism symptoms.
Even though little research has been done, a gluten-free/casein-free (GFCF) diet is an alternative treatment for children with autism. Many parents of autistic children choose the GFCF diet for their children. The diet eliminates all food containing gluten (found in wheat, barley, and rye) and casein (found in milk and dairy products). Children with autism may have an allergy or high sensitivity to foods containing gluten or casein. Autistic children may also process peptides and proteins in foods containing gluten and casein differently than other people. Benefits of a GFCF diet may include the following:
Increased speech and/or language use
Improved social interaction
Decreased self-stimulating and self-injurious behavior
Increases ability to focus
Improved sleep and immune function
Increases awareness
Effectiveness of a GFCF diet for autism lacks scientific evidence to say whether or not this diet can be helpful.
Unorthodox Autism Treatments
There is no cure or medication available to treat autism. For this reason, many parents are trying complementary and alternative medicine (CAM) for their autistic children. However, research on the safety and benefits of these approaches has been much less studied. Do not start any therapy until it is discussed with the child's doctor or medical team because some treatments could be dangerous for your child. In addition to checking with medical personnel, there are national agencies such as the Autism Society of America that can help answer your treatment questions.
Around 70% of autistic children suffer from sleep problems, possibly because children with autism may have a deficiency of melatonin. Low doses of supplemental melatonin may help children with autism get a better night’s rest. Studies have shown that melatonin does not have any side effects.
Children with autism may be suddenly set off by a change in schedule, a noise, or anything else that irritates them. Relaxation techniques such as deep pressure massage or weighted clothing may soothe agitation in autistic children during a meltdown.
Managing the Different Types of Autism
Management of autism depends on the type of autism and the severity of symptoms. For instance, mild types of autism such as level 1 autism spectrum disorder can be managed through behavior modification or social training while individuals with Rett syndrome would require more substantial support like physical or occupational therapy.
Some forms of autism require behavior modification and other additional support. You may be required to change your child's diet to avoid preservatives, gluten, and artificial sugars. Another example is adding food coloring to different foods in a meal to encourage your child to improve their visual skills as they eat. Your family doctor will guide you on the specific treatment options that will best serve your child.
What Causes Autism?
Researchers still do not know exactly what causes autism spectrum disorders. They do know that autism features abnormalities in brain structure or function. Researchers also suggest that some toxins or drugs may play a role. For example, valproic acid, thalidomide, and infection exposure during pregnancy increases autism risk in the infant.
Is Autism Genetic?
Genetics may play a significant role. Autism occurs more frequently in certain families and in patients with other genetic problems such as fragile X syndrome, tuberous sclerosis, congenital syndrome, and untreated phenylketonuria. There is no one single gene that has been identified as causing autism, but there tends to be a pattern of autism or related disabilities in many families. Some children may be born with a susceptibility to autism, but the trigger that causes autism is unknown.
Vaccines Don't Cause Autism
There is no link between childhood vaccines and autism spectrum disorders. The CDC completed nine studies which concluded that there is no connection between thimerosal-containing vaccines and autism. Thimerosal has been removed or reduced to trace amounts in all childhood vaccines, except for some flu vaccines.
Autism Spectrum Disorder Among Siblings
Autism spectrum disorders diagnoses have increased over the years. Researchers have found that autism runs in families and younger siblings of an autistic sibling have an 18.7% risk of also having autism. Identical twins have the highest percentage of autism occurrence, about a 75% chance that both will develop autism if one twin has autism. As previously mentioned, boys are about four to five times more likely to develop autism.
Autism Accommodation in School
Children with autism are given accommodations and assistance in schools. The Disabilities Education Act mandates that all eligible children receive a free appropriate public education that meets their unique needs. Students with disabilities are entitled to experience the "least restrictive environment" (LRE). School districts are required to educate students with disabilities in regular classrooms with non-disabled peers.
Support is usually provided to autism students in the form of a specially trained classroom or one-on-one paraprofessional, adapting curriculum, visual support, etc. However, parents may feel that a regular classroom environment is not suitable for their child. In this case, the student may be introduced to the mainstream environment in small and successful increments and build up to longer periods of participation.
Special education services also provide support for students with autism spectrum disorder by following the Individualized Education Program (IEP). The IEP explains the student's needs and how they will be met as well as their strengths and weaknesses, measurable goals and objectives.
Thriving With Autism
Autism spectrum disorders do not necessarily mean your child cannot lead an independent and useful life. People with early treatment and mild-to-moderate symptoms can even graduate from college or graduate schools. Others with below-average abilities may still be able to do specialized jobs and live independently or in group homes. The key to autism treatment is early recognition of the signs and symptoms of autism spectrum disorders in infants and young children. The following are tips for families with autistic children:
Their senses are out of sync-ordinary sights, sounds, tastes, and touches are perceived differently
Give clear, simple directions
They interpret language literally - idioms, puns, nuances, inferences, metaphors, and sarcasm may not make sense
Be on alert for body language cues
Visual support may help in daily tasks
Help them socially interact
Identify what triggers their meltdowns
Be patient and love them unconditionally
Autism Signs in Children: What Is Autism Spectrum Disorder?
