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In the Know - All about Autism Spectrum Disorder (ASD)

December 24, 2016

By Mendy Hecht, Hamaspik Gazette

Autism spectrum disorder (ASD) is one of today’s most well-known—and most-studied—conditions.  It’s also one of the most stereotyped conditions.

Because autism itself takes so many different forms (according to one researcher, there are at least 100 different types), autism was renamed “autism spectrum disorder” several years ago. 

The name refers to current medical consensus that ASD is a single condition that exists on a spectrum, or range, of symptoms, from mild and hardly noticeable on one end to severely disruptive and involved behaviors and other disabilities on the other.

One common ASD stereotype is that people with autism are severely introverted.

However, the fact is that people with ASD, especially on the high-function end of the spectrum, can be outgoing and otherwise “normal” people—but who may just be oblivious to social cues.  In turn, that too-often leads to the mistaking of innocent disability for rudeness or poor manners.

With understanding, though, ASD can be demystified, replacing rejection with connection—which, after all, is something every human being needs, including people with autism.

Definition: What is ASD?

Autism spectrum disorder (ASD) is the name for a group of neurodevelopmental disorders that includes a wide “spectrum” of symptoms, skills, and levels of disability. 

These disorders affect and impair the ability of a young child’s growing brain to develop normal social and communication skills—to understand, communicate and interact with others.  

Autism spectrum disorder can also include restricted and/or repetitive behaviors, interests and activities—which cause problems in social, occupational and other areas of healthy behavior.

Some people are hardly or mildly impaired by symptoms, while others have severe disability.

The number of children diagnosed with ASD is rising.  In December 2009, the CDC reported that ASD cases had risen 57 percent since 2005.  Today, the CDC estimates that one in 68 U.S. kids is diagnosed with ASD.

Statistics from the U.S. Department of Education and other government agencies indicate that ASD diagnoses are increasing at the rate of ten to 17 percent per year.  It’s unclear if that’s due to better detection and reporting, an actual increase in the number of cases, or both.

The exact number of children with ASD is not known.  

It can affect any individual and its incidence is the same all around the world.  Currently, there is no single known precise cause of autism.  

However, boys are at greater risk; ASD affects boys four times more than girls.  Also, families with one child with ASD have an increased risk of having another, and it’s not uncommon for parents or relatives of a child with ASD to have minor problems with social, communication, or behavioral skills themselves.  Additionally, kids with certain conditions, like Fragile X, Tourette syndrome or tuberous sclerosis, have slightly higher risk of ASD or ASD-like symptoms.

Other than that, ethnic, racial or social background, as well as family income, education, and lifestyle, do not seem to increase risk of ASD.

Children with ASD have symptoms that are typically recognized in the first two years of life.

There is currently no cure for ASD. 

But intensive, early treatment can make a big difference in the lives of many children—and the earlier the identification and intervention in a child’s life, the greater the long-term improvement.

Parents should talk with doctors as soon as they believe that their child may have ASD.

Autism types: the full spectrum

Before autism itself was incorporated into ASD, autism had a relatively narrow definition, with several similar disorders considered separate conditions.  Those included Asperger’s syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, or just PDD).

Other disorders on the spectrum are Rett syndrome, internally related but externally very different than standard autism, and Childhood Disintegrative Disorder, a rare condition in which a child learns skills, then loses them by age ten.

Autism can also be associated with other disorders that affect the brain like Fragile X syndrome, mental retardation or intellectual disability, tuberous sclerosis (benign brain tumors) or Tourette’s syndrome.  Some people on the spectrum will also develop seizures.

Most children with ASD are slow to gain knowledge or skills, and some have signs of lower than normal intelligence.  Other children with ASD 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.  A small number of children with ASD are savants—they have exceptional skills in a specific area, such as art, math or music.

As they mature, some children with ASD 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 problems.

Symptoms

Children with ASD generally have problems in three crucial areas of development: social interaction, language and behavior.  But because symptoms vary greatly, two children with the same diagnosis may act quite differently and have strikingly different skills.  

Some children show signs of ASD in early infancy.  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.

Each child with ASD is likely to have a unique pattern of behavior and level of severity—from low to high functioning.  Severity is based on social communication impairments and the restrictive and repetitive nature of behaviors, along with how these impact the ability to function.

Because of the unique mixture of symptoms in each child, severity can sometimes be hard to determine.  However, here are some common and general ASD behaviors, grouped by category.

Social communication and interaction

  • Fails to respond to his/her name; appears not to hear people at times

  • Resists cuddling and holding, seems to prefer playing alone; retreats into his/her own world

  • Poor eye contact

  • Lacks facial expression

  • Doesn’t speak or has delayed speech, or may lose previous ability to say words or sentences

  • Can’t start a conversation or keep one going; may only start a conversation to make requests or label items

  • Speaks with an abnormal tone or rhythm—may use a singsong voice or robot-like speech

  • May repeat 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; 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

Patterns of behavior

  • Performs repetitive movements like as rocking, spinning or hand-flapping; may perform activities that could cause harm like head-banging

  • Develops specific routines or rituals; becomes disturbed at the slightest change

  • Moves constantly

  • May be uncooperative or resistant to change

  • Has problems with coordination or has odd movement patterns, like clumsiness or walking on toes, and has odd, stiff or exaggerated body language

  • May be fascinated by details of an object, such as the spinning wheels of a toy car, but doesn’t understand the “big picture” of the subject

  • May be unusually sensitive to light, sound and touch, and yet oblivious to pain

  • Does not engage in imitative or make-believe play

  • May become fixated on an object or activity with abnormal intensity or focus

  • May have odd food preferences, such as eating only a few foods, or eating only foods with a certain texture

Causes

Researchers currently aren’t sure what causes ASD, a physical condition linked to abnormal biology and chemistry in the brain.  This condition has no single known direct cause.

Given the complexity of ASD, however, and the fact that symptoms and severity vary, there are probably many causes and factors.  Both genetics and environment may play a role.

Genetics

Because autism tends to run in families, genetic factors seem to be important, and a number of genes appear to be involved in autism.  Chromosomal abnormalities and neurological problems are also more common in families with autism.

Environment

Many health problems are due to both genetic and environmental factors, and this is likely the case with autism as well.  Researchers are currently exploring whether viral infections and air pollutants, for example, play a role in triggering autism.

A number of other possible causes have been suspected, but not proven, including diet, digestive tract changes, mercury poisoning, and the body’s inability to properly use vitamins and minerals.  Recently, research has been looking at possible links between chemicals found in plastics and disruptions in the body’s endocrine system, possibly resulting in a number of conditions, including autism—though no cause and effect has yet been proven.  

Vaccines?

The theory that the MMR (measles/mump/rubella) children’s vaccine may cause autism has been disproven by numerous studies, which found no connection.  Particularly, the infamous 1998 study that linked MMR with autism has long since been retracted and its lead author, Dr. Andrew Wakefield, all but banished from modern medicine.

Diagnosis: the technical nitty-gritty

For a child to be decisively diagnosed with ASD, he or she must have six or more of the numerous following symptoms from the current (5th) edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The DSM is the authoritative guide published by the American Psychiatric Association (APA) and used by mental health providers to diagnose mental conditions—and by insurance companies to reimburse for treatment. 

Also, two or more of the symptoms must fall under the social skills category.

Communication problems:

  • Inability to start and/or maintain a social conversation

  • Communication with gestures instead of words

  • Develops language slowly or not at all

  • Does not adjust gaze to look at objects that others are looking at

  • Refers to self incorrectly (for example, says “you want water” instead of “I want water”)

  • Does not point to direct others’ attention to objects

  • Repeats words or memorized passages over and over

  • Uses nonsense rhyming, sing-song voices or robot-like speech

Social-skills problems:

  • Prefers solitary or ritualistic play

  • Shows little pretend or imaginative play

  • Does not make friends

  • Does not play interactive games

  • Fails to respond to his or her name

  • May treat others as if they are objects

  • Shows lack of empathy; appears unaware of others’ feelings

Restricted, repetitive behavioral problems:

  • Odd or repetitive motor movements like body rocking or spinning, lining up or flipping toys and objects

  • Insistence on sameness, rigid routines, or ritualized patterns of verbal or nonverbal behavior

  • Interests in objects or topics that are abnormal in intensity, detail or focus—for example, a strong attachment to unusual objects or parts of objects, excessively limited narrow areas of interest, or interests that are excessively repetitive

Sensory-response problems:

  • Has heightened or low senses of sight, hearing, touch, smell, or taste

  • Rubs surfaces, mouths or licks objects

  • Seems to have a heightened or low response to pain

  • Resists cuddling and holding

Because autism includes a broad spectrum of symptoms, a single, brief evaluation cannot determine a child’s true abilities.  Ideally, a team of different specialists will evaluate your child for such things as communication, language and motor skills; speech; success at school; and cognitive abilities.  Ultimately, a doctor experienced in diagnosing and treating autism is usually needed to make the actual diagnosis.

Visiting the doctor or specialist

Before you see the doctor or specialist for an ASD diagnosis, here’s a helpful checklist:

  • Make a list of all medications, vitamins, herbs and medicines your child is taking

  • Bring a family member or friend with you for information and emotional support

  • Bring any record of your child’s developmental milestones

  • Bring any video of your child’s unusual behaviors or movements

  • Try to remember when his or her siblings began talking and reached other developmental milestones, and share that information with the doctor

The doctor is likely to ask you a number of questions.  Being ready to answer them may reserve time to go over any points you want to spend more time on.  The doctor may ask:

  • What specific behaviors prompted your visit today?

  • When did you first notice these symptoms in your child?

  • Have these behaviors been continuous or occasional?

  • Does your child have a family history of autism, language delay, Rett’s syndrome, obsessive-compulsive disorder, anxiety or other mood disorders?

  • Does your child have any other symptoms that might seem unrelated to autism, such as gastrointestinal problems?

  • Does anything seem to improve your child’s symptoms?

  • What, if anything, appears to worsen your child’s symptoms?

  • When did your child first crawl?  Walk?  Say his or her first word?

  • What are some of your child’s favorite activities?  Is there one that he or she favors?

  • Have you noticed a change in his or her level of frustration in social settings?

How the diagnosis is made

Doctors diagnose ASD by looking at behavior and development. Young children with ASD can usually be reliably diagnosed by age two.

Diagnosis of autism is based on standardized testing plus a clinical evaluation by an autism specialist. These professionals are usually psychologists, psychiatrists, developmental pediatricians, pediatric neurologists or medical geneticists.

Some commonly used diagnostic tests are the CARS (Childhood Autism Rating Scale), the ABC (Autism Behavior Checklist) and the GARS (Gilliam Autism Rating Scale). Formal diagnosis by an autism specialist usually depends on completing the ADOS (Autism Diagnostic Observation Scale), and ADI-R (Autism Diagnostic Interview-Revised). The CHAT (Checklist for Autism in Toddlers) is often used in pediatrican's offices to screen for autism symptoms.

When physical features, small head size or brain malformations are present or there is a family history of relatives with autism, genetic testing such as chromosome analysis and single-gene testing may be done.

Older children and adolescents should be evaluated for ASD when a parent or teacher raises concerns based on watching the child socialize, communicate, and play.

Diagnosing ASD in adults is not easy.  In adults, some ASD symptoms can overlap with symptoms of other mental health disorders, such as schizophrenia or attention deficit hyperactivity disorder (ADHD).  However, getting a correct diagnosis of ASD as an adult can help a person understand past difficulties, identify his or her strengths, and obtain the right kind of help.

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 Centers for Disease Control and Prevention (CDC) recommends specific ASD screenings at the 18- and 24-month visits.

Stage 2: Additional Evaluation

This evaluation is with a team of doctors and other health professionals with a wide range of specialties who are experienced in diagnosing ASD. This team may include:

  • A developmental pediatrician—a doctor who has special training in child development

  • A child psychologist and/or child psychiatrist—a doctor who knows about brain development and behavior

  • A speech-language pathologist—a health professional who has special training in communication difficulties.

The evaluation may assess:

  • Cognitive level or thinking skills

  • Language abilities

  • Age-appropriate skills needed to complete daily activities independently, such as eating, dressing, and toileting.

Because ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include blood tests and hearing tests.

The outcome of the evaluation will result in recommendations to help plan for treatment.

Diagnosis in older children and adolescents

Older children whose ASD symptoms are noticed after starting school are often first recognized and evaluated by the school’s special education team. The school’s team may refer these children to a health care professional.

Parents may talk with a pediatrician about their child’s social difficulties including problems with subtle communication. These subtle communication issues may include understanding tone of voice, facial expressions, or body language. Older children may have trouble understanding figures of speech, humor, or sarcasm. Parents may also find that their child has trouble forming friendships with peers. The pediatrician can refer the child for further evaluation and treatment.

Diagnosis in adults

Adults who notice the signs and symptoms of ASD should talk with a doctor and ask for a referral for an ASD evaluation. While testing for ASD in adults is still being refined, adults can be referred to a psychologist or psychiatrist with ASD expertise. The expert will ask about concerns, such as social interaction and communication challenges, sensory issues, repetitive behaviors, and restricted interests. Information about the adult’s developmental history will help in making an accurate diagnosis, so an ASD evaluation may include talking with parents or other family members.