Autism Contributions by FoundHealth

These pages are addressed to the parents of a child who has autism.

Autism is a complex neurological disorder. It may or may not be noticed during infancy. It is usually identified during early childhood (aged 2-6 years). People with autism have difficulty communicating and forming relationships.

Autism spectrum disorders, which include autism, Asperger syndrome, and pervasive developmental disorder, affect about 1 in 110 American children aged 3-17 years old. It may affect more boys than girls. Autism is a lifelong condition that varies in severity depending on the person. Some people with autism need to be cared for their entire life and have other conditions, such as seizures and intellectual disabilities. Others are able to live on their own and work.

The exact cause of autism is not known. Researchers have identified the following factors that may increase a person's risk of developing autism:

• Genetic factors
• Environmental factors
• Problems during pregnancy or delivery that could interfere with brain development
• Exposure to environmental toxins

What are the risk factors for autism?

[What are the symptoms of autism?

[How is autism diagnosed?

What are the treatments for autism?

Are there screening tests for autism?

[How can I reduce my child's risk of autism?

[What questions should I ask my doctor?

What is it like to live with autism?

Where can I get more information about autism?

Autism is difficult to diagnose. When the diagnosis is made, it can be heartbreaking to parents.

Parents are usually the first to suspect something is wrong. A previously normal child will suddenly act odd. Language development may stop or regress; social reactions may become inappropriate or disappear altogether. Or, bizarre behavior may appear, such as tantrums or obsessive repetition. Sometimes symptoms appear after vaccination, fever, infection, or other event. Any symptoms should be mentioned at routine doctor visits, where they will be explored to determine if they warrant referral to a specialist.

Regressive vs. Early Onset Autism

One way of classifying autism is by its onset pattern. The majority of cases are early onset, where a child shows symptoms during the first year of life. Regressive cases develop skills that are then lost at some time after the first year.

• An estimated 15-30% of autism cases are regressive.
• Regression usually occurs between 14 and 24 months of age, and is not considered regressive autism if it occurs after 36 months of age.
• Loss of language is the symptom most commonly noticed first, often accompanied by loss of eye contact.
• Also common is a loss of interest in social interactions.

First Steps Toward Diagnosis

Professionals who specialize in autism—child psychiatrists, child psychologists, developmental pediatricians, and pediatric neurologists—will observe the child's behavior, social contacts, and communication skills. They will assess mental and social skills and develop a detailed history of the child's behavior. Some doctors ask parents to bring in videotapes of the child at home. Photo albums and other records may help in identifying time sequences.

If autism is suspected, other tests may include:

• Psychological tests
• IQ tests
• Medical tests to investigate other related conditions. These may include:
  • Blood tests
  • Urine tests
  • DNA and chromosome testing
  • Electroencephalogram (EEG)
  • Magnetic resonance imaging (MRI)

Psychological Tests

A variety of age-appropriate questionnaires and skill tests compare a child's abilities and responses to standards established by testing thousands of "normal" children. Some test motor skills, like stacking blocks. Some test visual and coordination skills. Some compare daily activities with others of the same age.

Gilliam Autism Rating Scale (GARS) 2

GARS-2 is a revised version of the original GARS and is used to diagnose autism in individuals between the ages of 3 and 22. There are 42 test items based on definitions of autism in the DSM-IV and agreed upon by the Autism Association of America.
Items on the scale are organized into three categories: stereotyped behaviors, communication, and social interactions.

IQ Tests

These are comparative evaluations of individuals at the same age with respect to age-appropriate intellectual skills, like pattern recognition and problem solving. An IQ is the ratio of the child's calendar age to his intellectual "age"—the average performance of others at a given age. For example, if a 5-year-old child performs like a 10-year old, his IQ would be 200.

Blood and Urine Tests

Thousands of tests evaluate physical health. Some are done routinely, like a blood count and urinalysis. Others types of blood and urine tests are done only rarely for unusual conditions. Your doctor will select all that are appropriate.

DNA and Chromosome Testing

Genetic disorders are detected by looking at your genes. Certain genetic disorders are associated with autism, like tuberous sclerosis and fragile X syndrome.

Electroencephalogram (EEG)

This is a test that records the brain's activity by measuring electrical currents through the brain. Abnormalities may indicate a seizure disorder, which is commonly associated with autism.

Magnetic Resonance Imaging (MRI)

MRI uses magnetic waves to make pictures of the inside of the body. In this case, it is done to look for abnormal brain growth that may be related to the cause of your child’s autism.

These pages are addressed to the parents of a child who has autism.

Autism is a complex neurological disorder. It may or may not be noticed during infancy. It is usually identified during early childhood (aged 2-6 years). People with autism have difficulty communicating and forming relationships.

Autism spectrum disorders, which include autism, Asperger syndrome, and pervasive developmental disorder, affect about 1 in 110 American children aged 3-17 years old. It may affect more boys than girls. Autism is a lifelong condition that varies in severity depending on the person. Some people with autism need to be cared for their entire life and have other conditions, such as seizures and intellectual disabilities. Others are able to live on their own and work.

The exact cause of autism is not known. Researchers have identified the following factors that may increase a person's risk of developing autism:

• Genetic factors
• Environmental factors
• Problems during pregnancy or delivery that could interfere with brain development
• Exposure to environmental toxins

What are the risk factors for autism?

What are the symptoms of autism?

How is autism diagnosed?

What are the treatments for autism?

Are there screening tests for autism?

How can I reduce my child's risk of autism?

What questions should I ask my doctor?

What is it like to live with autism?

Where can I get more information about autism?

Autism may be noticed during infancy. But, it is usually noticed during early childhood (ages 2-6 years). Sometimes there is an event seemingly associated with the onset of symptoms, such as vaccination, infection, or seizure. The severity of symptoms varies. Children with autism may exhibit a combination of behaviors. Autism is a lifelong condition.

Each child is different, but symptoms fall into four broad categories:

• Poor or limited social relationships
• Underdeveloped communication skills
• Repetitive behaviors and unusual interests and activities
• Signs of altered and confused sensory input

Because children develop and change so rapidly at this early stage, symptoms often take the form of failure to progress or of regression from previous achievements. Something wrong may be apparent at birth, but it is more common for suspicions to be raised when a toddler fails to achieve normal social and developmental milestones.

The range of unusual behaviors is extensive. Children demonstrate many different combinations of behaviors.

Poor or Limited Social Relationships

Symptoms may include:

• Avoiding eye contact
• Avoiding social contact and preferring to be alone
• Not imitating others
• Not understanding other people's feelings and needs
• Failing to seek and even avoid personal attention
• Being physically aggressive
• Being self-destructive
• Often having tantrums, even with very little to provoke them

Underdeveloped Communication Skills

Symptoms may include:

• Never speaking—Some children with autism may not be able to learn how to speak, or they may only speak a few words.
• Using language in unusual ways, such as using incorrect words and changing the meaning of common words
• Only echoing what they have heard, not initiating their own speaking
• Trouble with nonverbal communication—For example, body language is used and interpreted wrongly; a hug may be interpreted as an assault.
• Not reacting to smiles in the manner expected from a child

Repetitive Behaviors, Unusual Interests, and Activities

Autistic children usually:

• Do not play imaginatively
• Lack interest in normal activities for their age
• May spend hours doing a single activity over and over again, such as rocking or flapping a hand
• May make frequent gesturing or fixate on specific objects
• Demand consistency and predictability in their surroundings—Tiny changes may evoke rage reactions.
• May be hyperactive, passive, and single-minded
• Resist change

Altered and Confused Sensory Input

Signs may include:

• An unusual sensitivity to sound, smell, taste, sights, and touch
• Responding to stimulation in abnormal ways
• Sniffing or licking their toys
• Feeling pain from a light touch, yet ignoring more severe pain
• Experiencing sounds as colors, and touches as sounds

Other Disorders

Some people with autism suffer from other disorders as well, including:

• Seizures —Seizures occur when the normal pattern of communication between nerve cells in the brain is disturbed. This can cause strange sensations, emotions, and behavior; or, the condition may result in convulsions, muscle spasms, and loss of consciousness.
• Intellectual disability —A condition that includes limitations in both intelligence and adaptive skills.
• Conditions affecting digestion, such as:
  • Gastroesophageal reflux disease
  • Malabsorption
  • Diarrhea
  • Not having a lot of food interests
  • Failure-to-thrive
• Genetic disorders, such as:
  • Tourette syndrome —This is a neurological disorder that is characterized by tics, rapid, involuntary movements, or sounds that occur repeatedly.
  • Fragile X syndrome —This is a hereditary disorder of the X chromosome, the most common cause of inherited mental retardation.
  • Phenylketonuria (PKU) —PKU is a genetic disorder of the enzyme that breaks down phenylalanine, which is an amino acid found in certain foods. Without a proper diet, PKU can lead to mental retardation.
  • Tuberous sclerosis—This is a genetic disorder of the nervous system that causes tumors to grow on the nerves in any part of the body. Neurofibromatosis can also produce other abnormalities, such as changes in the skin and deformed bones.

There are no guidelines for preventing autism because the cause is unknown. Scientists are actively searching for a better understanding of autism and ways to prevent it.

References:

Autism. American Academy of Pediatrics website. Available at: http://www.aap.org/healthtopics/autism.cfm . Accessed March 6, 2009.

Autism Society of America. Autism 101 course. Autism Society of America website. Available at: http://www.autism-society.org/site/PageServer?pagename=about_course . Accessed June 15, 2010.

Autism spectrum disorders (pervasive developmental disorders). National Institute of Mental Health (NIMH) website. Available at: http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml . Updated April 2008. Accessed September 11, 2008.

National Center on Birth Defects and Environmental Disabilities. Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/ncbddd/ . Updated June 2008. Accessed September 11, 2008.

Prevalence of the autism spectrum disorders in multiple areas of the United States, surveillance years 2000 and 2002. US Centers for Disease Control and Prevention website. Available at: . http://www.cdc.gov/ncbddd/dd/addmprevalence.htm . Updated February 8, 2007. Accessed March 6, 2009.

Rapin I. An 8-year-old boy with autism. JAMA. 2001;285:1749-1757.

What causes autism. Autism Society of America website. Available at: http://www.autism-society.org/site/PageServer?pagename=about_whatcauses . Updated January 2008. Accessed September 11, 2008.

12/31/2009 DynaMed's Systematic Literature Surveillance http://www.ebscohost.com/dynamed/what.php : Rice C. Prevalence of autism spectrum disorders—Autism and Developmental Disabilities Monitoring Network, United States, 2006. MMWR Surveill Summ. 2009;58(SS10):1.

References:

Autism Society of America. Autism 101 course. Autism Society of America website. Available at: http://www.autism-society.org/site/PageServer?pagename=about_course . Accessed June 15, 2010.

Autism spectrum disorders (pervasive developmental disorders). National Institute of Mental Health (NIMH) website. Available at: http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml . Accessed September 10, 2010.

Behrman RE, et al. Nelson Textbook of Pediatrics. 18th ed. Philadelphia: Saunders, 2007.

DynaMed Editorial Team. Autistic disorder. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed/what.php . Updated September 13, 2010. Accessed September 14, 2010.

Goetz CG. Goetz’s Textbook of Clinical Neurology.3rd ed. Philadelphia: Saunders, 2007.

Jacobson JL, Jacobson AM. Psychiatric Secrets. 2nd ed. Philadelphia: Hanley & Belfus, 2001.

Rapin I. An 8-year-old boy with autism. JAMA.2001;285:1749-1757.

Stern TA, et al. Massachusetts General Hospital Comprehensive Clinical Psychiatry. 1st ed. Philadelphia: Mosby Elsevier, 2008.

It is possible to develop autism with or without the risk factors listed below. However, the more risk factors you have, the greater your likelihood of developing autism. There is no way known to modify your child's risk for autism.

Genetic Factors

Genetics is believed to play a role in the risk of autism because the condition is more common in:

• Families
• Identical twins

Recent studies have linked deletions in a section of chromosome 16. This chromosome abnormality may account for a small percentage of autism cases.

Gender

Caucasian males are more likely to be affected by autism than females. When girls are affected, though, they may have more profound symptoms.

Age of Parents

Older parents (eg, mother's age over 35) may have a higher risk of having a child with autism.

Medical Conditions

Autism occurs more frequently in children with rare genetic disorders or other medical conditions, including:

• Tuberous sclerosis—A rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, and skin. It commonly affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease.
• Fragile X syndrome —A hereditary disorder of the X chromosome. It is the most common cause of inherited mental retardation.
• Neurofibromatosis —A genetic disorder of the nervous system. It causes tumors to grow on the nerves in any part of the body. Neurofibromatosis can also produce other abnormalities, such as changes in the skin and deformed bones.
• Phenylketonuria (PKU) —A genetic disorder of the enzyme that breaks down phenylalanine, which is an amino acid found in certain foods. Without a proper diet, PKU can lead to intellectual disability.
• Problems during pregnancy or delivery, including rubella. —Rubella is a mild, highly contagious illness that is caused by a virus. It is characterized by a rash, swollen glands, and joint pain. If a pregnant woman has rubella, it can cause birth defects in her baby. Other possible risk factors include breech delivery and birth at less than 35 weeks gestation.
• Epilepsy —The term “epilepsy” refers to any disorder characterized by recurrent seizures. During a seizure, you may lose consciousness, stare into space, have convulsions (abnormal jerking of the muscles), or experience abnormalities of sensation or emotion.
• Tourette’s syndrome
• Newborn encephalopathy—This is a syndrome of disturbed brain function that includes breathing difficulties, problems with reflexes, seizures, and other symptoms.
• Moebius syndrome, cytomegalovirus, herpes encephalitis—These are sometimes listed as associated conditions.
• Birth defects—Birth defects may also predispose a child to developing autism.
• ADD/ADHD - 31% of children with autism also meet diagnostic criteria for ADHD
• Maternal dysbiosis - During childbirth, beneficial bacteria are passed from mother to child. These bacteria are the building blocks of both the digestive and the immune system. A link has been observed between an imbalance in gut flora in mothers and the presence of autism in children. It is known as Gut and Psychology Syndrome, or GAPS.

There has also been a lot of press attention claiming links between vaccines and autism, as well as growing concern about high fructose corn syrup (HFCS) and its possible causal role. Fetal and early childhood mercury exposure have also been linked to autism.

References:

Autism spectrum disorders (pervasive developmental disorders). National Institute of Mental Health (NIMH) website. Available at: http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml . Updated April 2008. Accessed September 11, 2008.

Autism Society of America. Autism 101 course. Autism Society of America website. Available at: http://www.autism-society.org/site/PageServer?pagename=about_course . Accessed June 15, 2010.

Behrman RE, et al. Nelson Textbook of Pediatrics. 18th ed. Philadelphia: Saunders, 2007.

DynaMed Editorial Team. Autistic disorder. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed/what.php . Updated September 13, 2010. Accessed September 14, 2010.

Dufault, Renee, et al. "A Macroepigenetic approach to identify factors responsible for the autism epidemic in the United States". Clinical Epigenetics 4, no. 6 (10 April 2012).

Goetz CG. Goetz’s Textbook of Clinical Neurology.3rd ed. Philadelphia, PA: Saunders; 2007.

Jacobson JL, Jacobson AM. Psychiatric Secrets. 2nd ed. Philadelphia, PA: Hanley & Belfus, 2001.

National Center on Birth Defects and Environmental Disabilities. Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/ncbddd/ . Accessed June 23, 2008.

Neonatal encephalopathy. Newborn Services Clinical Guideline website. Available at: http://www.adhb.govt.nz/newborn/guidelines/Neurology/NE.htm . Updated November 2004. Accessed June 16, 2010.

Rapin I. An 8-year-old boy with autism. JAMA. 2001;285:1749-1757.

Stern TA, et al. Massachusetts General Hospital Comprehensive Clinical Psychiatry. 1st ed. Philadelphia, PA: Mosby Elsevier; 2008.

Parker SK, Schwartz B, Todd J, Pickering LK. Thimerosal-containing vaccines and autistic spectrum disorder: a critical review of published original data. Pediatrics.2004;114(3):793-804.

Wilson K, Mills E, Ross C, McGowan J, Jadad A. Association of autistic spectrum disorder and the measles, mumps, and rubella vaccine: a systematic review of current epidemiological evidence. Arch Pediatr Adolesc Med.2003;157(7):628-634.

References:

Behrman RE, et al. Nelson Textbook of Pediatrics. 18th ed. Philadelphia, PA: Saunders; 2007.

DynaMed Editors. Autism spectrum disorders. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed/what.php . Updated September 13, 2010. Accessed September 13, 2010.

Goetz CG. Goetz’s Textbook of Clinical Neurology. 3rd ed. Philadelphia, PA: Saunders; 2007.

Jacobson JL, Jacobson AM. Psychiatric Secrets. 2nd ed. Philadelphia, PA: Hanley & Belfus; 2001.

National Institute of Mental Health. Autism spectrum disorders (pervasive developmental disorders): treatment options. National Institute of Mental Health website. Available at: http://www.nimh.nih.gov/health/publications/autism/treatment-options.shtml . Accessed September 10, 2010.

Stern TA, et al. Massachusetts General Hospital Comprehensive Clinical Psychiatry. 1st ed. Philadelphia, PA: Mosby Elsevier; 2008.

Tafiadis, Dionysios et al (2008). The Gilliam Autism Rating Scale (GARS - 2), a pilot study for the Greek autistic population. Annals of General Psychiatry, accessed at http://resources.ciis.edu:2067/content/j57x205647703312/fulltext.html

Autism is difficult to diagnose. When the diagnosis is made, it can be heartbreaking to parents.

Parents are usually the first to suspect something is wrong. A previously normal child will suddenly act odd. Language development may stop or regress; social reactions may become inappropriate or disappear altogether. Or, bizarre behavior may appear, such as tantrums or obsessive repetition. Sometimes symptoms appear after vaccination, fever, infection, or other event. Any symptoms should be mentioned at routine doctor visits, where they will be explored to determine if they warrant referral to a specialist.

Regressive vs. Early Onset Autism

One way of classifying autism is by its onset pattern. The majority of cases are early onset, where a child shows symptoms during the first year of life. Regressive cases develop skills that are then lost at some time after the first year.

• An estimated 15-30% of autism cases are regressive.
• Regression usually occurs between 14 and 24 months of age, and is not considered regressive autism if it occurs after 36 months of age.
• Loss of language is the symptom most commonly noticed first, often accompanied by loss of eye contact.
• Also common is a loss of interest in social interactions.

First Steps Toward Diagnosis

Professionals who specialize in autism—child psychiatrists, child psychologists, developmental pediatricians, and pediatric neurologists—will observe the child's behavior, social contacts, and communication skills. They will assess mental and social skills and develop a detailed history of the child's behavior. Some doctors ask parents to bring in videotapes of the child at home. Photo albums and other records may help in identifying time sequences.

If autism is suspected, other tests may include:

• Psychological tests
• IQ tests
• Medical tests to investigate other related conditions. These may include:
  • Blood tests
  • Urine tests
  • DNA and chromosome testing
  • Electroencephalogram (EEG)
  • Magnetic resonance imaging (MRI)

Psychological Tests

A variety of age-appropriate questionnaires and skill tests compare a child's abilities and responses to standards established by testing thousands of "normal" children. Some test motor skills, like stacking blocks. Some test visual and coordination skills. Some compare daily activities with others of the same age.

Gilliam Autism Rating Scale (GARS) 2

GARS-2 is a revised version of the original GARS and is used to diagnose autism in individuals between the ages of 3 and 22. There are 42 test items based on definitions of autism in the DSM-IV and agreed upon by the Autism Association of America.
Items on the scale are organized into three categories: stereotyped behaviors, communication, and social interactions.

IQ Tests

These are comparative evaluations of individuals at the same age with respect to age-appropriate intellectual skills, like pattern recognition and problem solving. An IQ is the ratio of the child's calendar age to his intellectual "age"—the average performance of others at a given age. For example, if a 5-year-old child performs like a 10-year old, his IQ would be 200.

Blood and Urine Tests

Thousands of tests evaluate physical health. Some are done routinely, like a blood count and urinalysis. Others types of blood and urine tests are done only rarely for unusual conditions. Your doctor will select all that are appropriate.

DNA and Chromosome Testing

Genetic disorders are detected by looking at your genes. Certain genetic disorders are associated with autism, like tuberous sclerosis and fragile X syndrome.

Electroencephalogram (EEG)

This is a test that records the brain's activity by measuring electrical currents through the brain. Abnormalities may indicate a seizure disorder, which is commonly associated with autism.

Magnetic Resonance Imaging (MRI)

MRI uses magnetic waves to make pictures of the inside of the body. In this case, it is done to look for abnormal brain growth that may be related to the cause of your child’s autism.

References:

Autism spectrum disorders (pervasive developmental disorders). National Institute of Mental Health (NIMH) website. Available at: http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml . Updated April 2008. Accessed September 11, 2008.

National Center on Birth Defects and Environmental Disabilities. Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/ncbddd/ . Accessed June 23, 2008.

References:

Autism spectrum disorders (pervasive developmental disorders). National Institute of Mental Health website. Available at: http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml . Updated April 2008. Accessed September 11, 2008.

Autism through the lifespan. Autism Society of America website. Available at: http://www.autism-society.org/site/PageServer?pagename=life_lifespan . Updated March 2008. Accessed September 11, 2008.

Behrman RE, Kliegman R, Jenson HB. Nelson Textbook of Pediatrics.18th ed. Philadelphia, PA: Saunders; 2007.

Goetz CG. Goetz’s Textbook of Clinical Neurology.3rd ed. Philadelphia, PA: Saunders, 2007.

Jacobson JL, Jacobson AM. Psychiatric Secrets.2nd ed. Philadelphia, PA: Hanley & Belfus; 2001.

Moore DP, Jefferson JW. Handbook of Medical Psychiatry. 2nd ed. Philadelphia, PA: Elsevier Mosby; 2004.

Stern TA, et al. Massachusetts General Hospital Comprehensive Clinical Psychiatry.Philadelphia, PA: Mosby Elsevier; 2008.

When your child goes to the doctor for regular check-ups, the doctor will assess your child to see if he has any developmental delays. These "well-child" check-ups are typically scheduled for:

• 9 months

• 18 months

• 24 or 30 months

To assess for developmental delays, the doctor will focus on your child’s social skills, language skills, and behavior. The doctor may spend time talking and playing with your child, and you will be asked questions about your child’s development.

This is a good time for you to talk openly to the doctor about any concerns that you have about how your child is growing and behaving. If your child does not seem to be developing normally or has regressed, these are of special concern and should be shared with the doctor.

Examples of tests that are used to screen for developmental delays include:

• Ages and Stages Questionnaire

• Parents Evaluation of Developmental Status

In addition to screening for developmental delays, the doctor may also give a screening test to check specifically for autism . These screening tools focus on the criteria for diagnosing autism that is in the American Psychiatric Association’s Diagnostic and Statistical Manual.

One test that is used is called the Checklist for Autism in Toddlers (CHAT), which is for children as young as 18 months—when autism is typically diagnosed. Some samples of the types of questions in CHAT include:

• Does your child take interest in other children?

• Does your child ever bring objects over to you to show you something?

• Does your child sometimes stare at nothing or wander with no purpose?

If the screening shows that your child has signs of autism, the next step would be to work with a professional who specializes in the condition. This may be a child psychologist, who will do further testing.

It is important to keep in mind that if your child is in the high-risk category, the doctor will screen him sooner for developmental delays and autism. Your child is considered high-risk if he:

• Had a low birth weight

• Was premature

• Has a sibling with a developmental delay or autism

References:

Autism spectrum disorders (pervasive developmental disorders). National Institute of Mental Health (NIMH) website. Available at: http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml . Updated April 2008. Accessed June 23, 2008.

Behrman RE, et al. Nelson Textbook of Pediatrics. 18th ed. Philadelphia, PA: Saunders; 2007.

Centers for Disease Control and Prevention. Austism spectrum disorders (ASDs): screening and diagnosis. Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/ncbddd/autism/screening.html . Accessed September 15, 2010.

DB Peds.org. Modified checklist for autism in toddlers (M-CHAT) form. DB Peds.org website. Available at: http://www.dbpeds.org/articles/detail.cfm?TextID=466 . Accessed September 15, 2010.

DynaMed Editorial Team. Autism spectrum disorders. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed/what.php . Updated September 13, 2010. Accessed September 15, 2010.

First Signs. Recommended screening tools. First Signs website. Available at: http://www.firstsigns.org/screening/tools/rec.htm . Accessed September 15, 2010.

Goetz CG. Goetz’s Textbook of Clinical Neurology.3rd ed. Philadelphia, PA: Saunders, 2007.

Mayo Clinic. Autism: tests and diagnosis. Mayo Clinic website. Available at: http://www.mayoclinic.com/health/autism/DS00348/DSECTION=tests-and-diagnosis . Updated May 27, 2010. Accessed September 15, 2010.

National Center on Birth Defects and Environmental Disabilities. Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/ncbddd/ . Accessed June 23, 2008.

Stern TA, et al. Massachusetts General Hospital Comprehensive Clinical Psychiatry. Philadelphia, PA: Mosby Elsevier; 2008.

Your child has a unique medical history. Therefore, it is essential to talk with your doctor about your experience with autism. By talking openly and regularly with your doctor, you can take an active role in your child's care.

General Tips for Gathering Information

Here are some tips that will make it easier for you to talk to your doctor:

• Bring someone else with you. It helps to have another person hear what is said and think of questions to ask.
• Write out your questions ahead of time, so you don't forget them.
• Write down the answers you get, and make sure you understand what you are hearing. Ask for clarification, if necessary.
• Don't be afraid to ask your questions or ask where you can find more information about what you are discussing. You have a right to know.

Specific Questions and Comments for Your Doctor

About Your Child

• How would you classify my child's case on a range of mild to severe?

• What can I expect from my child in terms of development?

• Will my child be able to attend a "normal" school?

About Treatment Options

• Will you be able to manage my child’s care long-term?

• Can you be, or will you recommend someone who can be, our constant advisor to evaluate my child's progress and suggest treatment changes when beneficial?

• Are there other healthcare professionals you can refer us to who can help with treatment?

• Are medicines indicated for my child? If so, what are the benefits and side effects?

About Lifestyle Changes

• What is the best way to incorporate these lifestyle changes into our lives?

• How will these changes affect my other children?

• What are the best local information resources and support for the changes we are going to have to make in our lives?

About Outlook

• Can you recommend a support group or other means of emotional support for our family?

• Are there any funding sources available for the types of support we may need?

• As my child grows, how independent will he be?

• Shall we make financial and/or guardianship arrangements in case something happens to us?

• Should we have another child? What is the chance that another child will also have autism?