The Spectrum

My son Sam is a success story.  It didn’t just happen.  A lot of work, prayers and tears are responsible.  Over the last couple of years I have had a number of people ask me questions or seek advice.  I remember being them.  This information contained in these pages comes from my own research and my own experiences, both positive and negative.  I hope it is helpful to you.

I often find myself simply using the term Autism when talking about my son Sam.  I do it because it is easier.  People know the word!  If I say, “PDD-NOS”, I get a blank stare.  Then the inevitable “what is that”?

What most people don’t realize is “Autism” has become a catch phrase for a spectrum of disorders.  Autism Spectrum Disorder or ASD is actually an umbrella for several disorders with similar symptoms and treatments.  Understanding each disorder will enable us all to better help the children and adults diagnosed with one.

What is “THE SPECTRUM”?

I use the term “the spectrum” to describe the group of Autism Spectrum Disorders.  The spectrum consists of six different disorders.

• Pervasive Developmental Disorder or PDD
• Autism
• Asperger’s Syndrome
• Pervasive Developmental Disorder Not Otherwise Specified or PDD-NOS
• Rett Syndrome
• Childhood Disintegrative Disorder or CDD

Global studies have shown the spectrum disorders to be more common than diabetes or Down syndrome in children.  Studies here in the U.S. estimate as much as 10% of the population may be suffering one of these disorders! 

Studies have also shown the necessity of early intervention.  I can testify to that myself.  Sam’s would not be where he is today without it.  Occupational Therapy, Speech Therapy, Physical Therapy and developmentally delayed preschool made a big difference for him.  I knew something was wrong when Sam was about eighteen months old.  His pediatrician insisted children develop at their own pace.  Sure they do, but when a child reaches the age of three and one half years and has a ten word vocabulary something is wrong!  Trust your instincts.  It is estimated that only 50% of children are diagnosed by age 5.  That is a lot of missed opportunity.

Children with spectrum disorders show deficiency in three areas, social interaction, verbal and nonverbal communication and repetitive behaviors and/or interests.  They may also have sensitive to certain sensory experiences such as sounds or textures.  Each of these may range from the mild to the severe.

Each child is different.  These differences often make it difficult to diagnosis which disorder your child has. 

Children may experience problems from birth.  Slower or atypical development may be evident.  Most parents or caregivers notice differences when the child doesn’t develop at the same pace as other children.  Other children may seem to be developing normally and then change suddenly.  The loss of language and social skills may be evident.  A normally loving child may suddenly reject a simple touch.

Symptoms of the spectrum.

• Lack of “baby talk” by age 1.
• Lack of pointing or other meaningful gestures by age 1.
• Does not speak a word by 16 months.
• Poor eye contact.
• Loss of language skills.
• Loss of social skills.
• Lack of basic social skills by age 2.
• Does not respond to name.
• Does not smile.
• Doesn’t seem to know how to play with toys.
• May seem hearing impaired.
• Excessively lines up objects or toys.
• Overly attached to a certain toy or object.
• Spinning.
• Hand flapping.

These are possible symptoms.  They do not necessarily mean a child has a spectrum disorder.  If your child exhibits two or more of the symptoms see your doctor.  Remember the importance of early intervention.

Social Issues.

People are social.  It is simply part of being a person.  Babies are social almost from birth.  They watch us or grab a finger.  They turn their head to the sound of a voice.  They smile.

Children with spectrum disorders have problems interacting with others.  The problem may be as simple as lack of eye contact or as severe as the crying out as if in pain to a touch.  Your child may seem to be a loner or may act as if he or she doesn’t know how to play with other children.  Parents may feel as if they have no connection with their child.  Studies have shown these children to have strong affection with their caregivers.  This affection is often passive.

Body language is hard for the child to understand.  A smile or a tear may have no meaning.  It may seem as if the child isn’t listening to you.  They have difficulty differentiating the sound of anger from the sound of joy.  Spectrum children also have problems seeing things from another person’s point of view.  They are unable to predict the actions of others.  This can cause great frustration for your child.

Your child may have problems controlling their emotions.  Meltdown!  The loud crying thrashing “fit” the child may sometimes experience.  They may be said to be “immature” or “out of control”.  Some children may break things, attack others or hurt themselves.  Head banging, hair pulling and biting are also common.  It is important to remember the child is not willfully misbehaving.  It is important to recognize these problems, learn what may cause them and find the best way to deal with them.

Communication Problems

Babies begin communicating with us from birth.  They cry for food or a diaper change.  They babble and coo.  By the end of the first year they are vocal.  The first words have been spoken and the word no is at least understood if not expressed! 

Spectrum disorders cause different problems for each child.  Some never speak.  Others begin to speak and later stop.  Sometimes it may seem as if they are parrots, echoing what they hear.  This common condition is called echolalia.  They may not be able to use sentences or may repeat the same phrase over and over.  Some other children may exhibit only slight delays or have large vocabularies.  However, they may not be able to carry on a conversation because of lack of comprehension of what communication really is.

Communication is made more difficult when their body language is difficult to understand.  Gestures and expressions usually do not match what is being said.  Voice tone is affected.  It may sound robotic or sing song.  They may sound more like an adult when speaking.

Difficulties arise as these children get older and aren’t able to communicate with others.  They may become frustrated, some even exhibiting violent behaviors or “melt downs”.  Anxiety and depression may be a result.

Repetitive Behavior

Behavior is often what defines a spectrum child.  These children usually have a normal physical appearance.  Repetitive behavior is often what is first noticed by others.  Hand flapping, spinning or walking tiptoe are common.  These behaviors may be extreme or hardly noticeable. 

They may spend hours arranging toys in straight lines or a particular pattern.  They don’t pretend play.  Disturbing a toy may cause a lot of distress.  Repetitive behavior may also be an intense interest in one particular thing.  The child may be obsessed with movies and tv or cars.  Some children seem to be experts in science or math.    

Other Spectrum Problems

Sensory Problems.  Inaccurate perception of sight, sound and touch may cause problems.  Many spectrum children are very sensitive to sound, texture, taste and smell.  The doorbell may cause your child to cover their ears and run for cover.  Potatoes may be a favorite when in the form of potato salad but inedible when mashed.   If your child is a “stripper” he or she may actually be overly sensitive to the feel of their clothing.  Brushing or combing the hair may be nearly impossible because of the touch.  When perception is accurate children learn from what they see, hear, or touch. When the information is inaccurate or missing normal things become confusing.  Spectrum children are highly attuned to certain sounds, textures, tastes, and smells.  What seems to be normal for some may even be physically painful to others.  Clothes may be uncomfortable.  This may explain why you have a “little stripper”!   The sound of a telephone may cause your child to cry and cover her ears.  Thunder or clapping may be unbearable.  On the other hand, your child may love the sound of the vacuum or dishwasher. In ASD, the brain seems unable to balance the senses appropriately. Spectrum children may seem oblivious to pain, causing alarm for the parent.  Some may not be able to tolerate the touch that comes with a hug.

Mental Retardation.  Cognitive disability is very common.  The child may have widely varying scores when tested.  Scores may be high in some areas and low in others.

Seizures.  Twenty-five percent of those within the spectrum will develop seizures.  They often begin in early childhood.  Seizures can cause loss of consciousness, convulsions, or staring spells.  An EEG (electroencephalogram) can help with this diagnosis.  Fortunately, most seizures can be controlled by medication.

Fragile X Syndrome.  The most common inherited form of mental retardation is caused by this syndrome.  One part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X is found in about two to five percent of people within the spectrum. Testing for this syndrome is important.   Parents of a child with a spectrum disorder and Fragile X have a fifty-fifty chance of having another child, a boy, born with the syndrome.  Other family members may also wish to be tested before having children.

Tuberous Sclerosis.  Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It is found in one to four percent of those that have a spectrum disorder.

Diagnosing the Disorders

In the past there have been concerns with making an early diagnosis.  However,  studies have shown that the earlier interventions begin the greater the success.  Therefore, early diagnosis is very important for the child’s long term future.  Studies show intensive early intervention and developmental education, such as a developmentally delayed preschool, provide many children with the best chance at success.

The initial evaluation may be done by your child’s primary physician.  Diagnosis is based on certain behavioral characteristics. The child must exhibit problems in at least one of the areas of communication and socialization.  Or restricted behavior must be evident before the child is three years old. After the initial diagnosis the child will receive a comprehensive evaluation done by a multidisciplinary team, including but not limited to a Developmental Pediatrician, Occupational Therapist, Speech Therapist, Physical Therapist, Social Worker and Psychologist.

Screening Tools

Several tools are available to screen your child for spectrum disorders.  Some include the Checklist of Autism in Toddlers also known as CHAT and the Modified Checklist for Autism in Toddlers also known as the M-CHAT.  Other tools are the Screening Tool for Autism in Two-Year-Olds or STAT and the Social Communication Questionnaire or SCQ (age 4 and above).

These tools may not find evidence of high-functioning Autism or Asperger Syndrome.  Other tools are now available for those disorders. The Autism Spectrum Screening Questionnaire or ASSQ, Childhood Asperger Syndrome Test or CAST and the Australian Scale for Asperger's Syndrome.  These tools focus on the social and behavioral problems in children without a significant language delay.

Other tools include the Autism Diagnosis Interview-Revised ADI-R and the Autism Diagnostic Observation Schedule or ADOS-G.  The Childhood Autism Rating Scale or CARS also may be used.

Your child may also have genetic testing and an MRI of the brain.  Hearing and vision will also be tested.  Other tests may check levels of lead and mercury in the blood.

Treatment of Spectrum Disorders

Unfortunately, there is no one size fits all treatment.  There are a number of different options available today.  One thing that is clear, early intervention is an absolute necessity.

Your child may receive a number of different therapies.  Speech, Occupational and Physical therapy are very helpful.  Structure is very important in the child’s daily life.

Applied Behavior Analysis or ABA has become very popular.   Most states offer an early intervention program.  The program may include a developmentally delayed preschool.  School age children may have an IEP or Individual Education Plan.  They will receive therapies and accommodations for their individual special needs.

Diet as a Treatment

Several different diets have shown some success.  The need for a special diet is based upon a vitamin or mineral deficiency or food allergies.  Food allergies may cause autism symptoms in some children.

The gluten-free, casein-free diet has become quite popular. Gluten is a casein-like substance is found in grain products such as wheat, oat, rye, and barley. Casein is the principal protein in milk. Following this diet can be quite a challenge as both gluten and casien are common in the foods we eat.

Medications Used in Treatment

Medications are often used to treat behavioral problems.  They are used to help the child function more effectively.  Many of these medications are used “off-label”.  “Off label” means the drug has not been approved by the FDA for use in children.  More research needs to be done to ensure the safety of these treatments.  Use medication  only with the  advice of a  physician.