HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

Education and Counseling for Individuals Affected by Autism Spectrum Disorders

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All You Need To Know About Individualized Education Programs

"Our Asperger's daughter is experiencing severe meltdowns due to the new school year. We recently were forced to make a trip to the Children's Hospital. Every person we've seen asks if she has an IEP. She does not, just a 504. The school district says she does not qualify for an IEP, which I question since all the mental health professionals think she should have one. Why does she need an IEP, and what should be included that will help this child?"

Not all children who have disabilities require specialized instruction. For children with disabilities who do require specialized instruction, the Individuals with Disabilities Education Act (IDEA) controls the procedural requirements, and an IEP is developed. The IDEA process is more involved than that of Section 504 of the Rehabilitation Act and requires documentation of measurable growth. For children with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document is created to outline their specific accessibility requirements. Children with 504 Plans do not require specialized instruction, but like the IEP, a 504 Plan should be updated annually to ensure that the child is receiving the most effective accommodations for her specific circumstances. 

There is perhaps no process as frustrating for parents and teachers alike as the IEP process. As a team process, it is designed to help parents and teachers develop a program that is in the best interest of the child. All too often, the schools experience a lack of resources, which leaves the parents feeling that they are not receiving the support that they need. 

The IEP process is critical to the educational success of the child, and with success can leave parents feeling empowered to make a difference in the life of their child. Parents and teachers need to develop an IEP process that enables both parties to feel as though their concerns are heard, and the child's needs are being met.

Here are some important resources that will assist both parents and teachers in coming up with the most effective IEP possible:

 
COMMENTS:

•    Anonymous said... We have gone through a similar situation. It took 2 full years to get an Aspergers diagnosis, and the school STILL didn't want to acknowledge anything because of his grades. Early elementary was bumpy from behavior issues, but once we learned his triggers it all subsided. He had to take an IQ test, which the special Ed teacher and the state tester felt was not accurate since he deliberately started answering questions with nonsense once he was tired of it. We never did qualify for an IEP, but were able to get a 504. We really don't have much in the plan, since luckily we have been " bump" free for awhile. I just let his teachers know his triggers, and he is allowed to remove himself from the classroom of he begins to feel overwhelmed. ( this does have to be monitored, however, as he can be quite manipulative) we have been so fortunate that as he has gotten older and school has gotten harder he is actually doing much better. I was concerned with middle school being just too much with all the changes, but we have been incident free for 2 years. Turns out that class is over before he is "done". Keep pushing for what you feel is best, you know your aspire better than anyone and are the very best advocate they have!!! Best of luck!
•    Anonymous said... The Occupational Therapy part of the IEP will be very important, at least for my Aspie, in the eval part of this. This will help with any accommodations that are needed in the classroom such as a desk corral, placement of desk, etc. An IQ test should also be included but it is hard with an Aspie to be accurate. I am sure you know that YOU know best of what your child needs! Stick to your guns!
•    Anonymous said... Tell them your child has AUTISM because they understand that. Not everyone understands Aspergers. It is on the spectrum so you are telling the truth. Make the school district test her again. They cannot refuse you an IEP meeting.
•    Anonymous said... One of the hardest things we needed to decipher growing up was the difference between meltdowns that were due to Aspie things and meltdowns that were mere behavior problems. Once we realized that not all of his tantrums were from the disability, it cut way down on the total meltdowns and we were able to deal with the real issues from Aspergers. It also helped us realize his queues before the meltdown happened so that we could redirect before he became overloaded or overestimulated.
•    Anonymous said... My son has a 504 plan. His school feels he doesn't need a IEF because he "behaves well." I recently requested a meeting with his teacher and school guidance counselor to review his 5. I addresses my concerns to both regarding his attention/anxiety regarding his reading. I was basically told, in a nice way I'm jumping the gun.
•    Anonymous said... If she has Aspergers/Autism she should have an IEP. You can have a behavioral developmental pediatrician diagnose her and bring the paper work to your school.
•    Anonymous said... I have students who have 504s. The good thing is, teachers can still make any accomodations for these students that they deem necessary to improve the student's learning. My Asperger's/ADHD son has neither right now, because he gets good grades. Therefore, his school has determined he doesn't qualifiy for any special services.
•    Anonymous said... I am going through a similar situation with my son and his school right now. I live in NC. My son is 15 and in the 10th grade. He was diagnosed this past July with ASD, Asperger's Syndrome (he also has Graves Disease, medical PTSD, Depression, and anxiety disorder). He refuses to go to school. So far, this school year, he has only attended the first three days of school, and then his anxiety and panic got the better of him. I had to put in writing to the school, to request an evaluation for an IEP. Now, by law, they have 60 (or 90, I forgot) days to have him tested. I had tried to have him tested this past June, but I was talked out of it by the lady in charge of special education. She said that my son is "too smart" (honors classes) and does not misbehave in school, so she felt that we should wait til the new school year and if anything, sign up for a 504 plan. Her real reasoning was because it was the beginning of the summer, and she said that it would be harder for her to find someone to do the testing. Now, he is falling behind in school because of his social fears and anxiety, and they are just getting worse every day. If she would have just listened to me in the beginning, then his school year would not have started off like this. We are coming up on the one year anniversary of his father's death this month, which is making his situation even worse.
•    Anonymous said... A lot of this comes down to money, at least in the UK. To get an IEP the child needs to be statemented, but this is done by council employees that know as soon as it is done and an IEP setup, they council will have to provide some extra funding. We struggled to get our boy through, having to fight every turn and the problems tearing the family apart. We found a family support worker as part of social services (different money pot to education) who worked with us for over a year to get our boy statemented and an IEP, as well as moving him to a school that understood his needs and teaching us to understand his needs. He was way behind in his education the past school not bothering with him, but I'm so proud of him now, he's caught up everything this past year and moved to the top class where I know he'll continue to excel, what a change and family life has turned around to being fun and relaxed again.
It really makes me mad though families have to fight as hard as they do to get the help provided, the fight is hard enough to handle a child with these issues let alone fighting the authorities that were put there to help.

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Schools for Asperger's Children

Sherman Oaks and Culver City, California
Village Glen School—

Sponsored by the The Help Group, the Village Glen School is a therapeutic day school program for kids with challenges in the areas of socialization, communication, language development, peer relations, learning disabilities, and academic performance without significant behavior problems. Many of the clients served at Village Glen experience special needs related to Aspergers and high functioning autism. Visit their web site at: www.villageglen.org

East Bay, California
The Springstone School—

The Springstone School, located in Concord, California, is an independent middle school that promotes and develops academic, social and prevocational skills for clients with Aspergers and Nonverbal Learning Disabilities. The professional and experienced staff fosters values of independence, responsibility and community in preparation for high school, and beyond through intensive, individualized instruction in small structured classrooms.

Contact Information:
The Springstone School
1035 Carol Lane
Lafayette, CA 94549
(925)962-9660
Fax: (925) 962-9558
email: info@thespringstoneschool.org
website: www.thespringstoneschool.org Please visit their web site at: The Springstone School

San Francisco Bay Area, California
Orion Academy—

Orion Academy is a nonprofit College Preparatory Day School located in San Francisco's East Bay area for High School Clients with Neurocognitive Disabilities.

Mission: To educate secondary clients with NLD, Aspergers and Other neurocognitive disorders in a program that equally emphasizes academics, social competency and pragmatic language development.

If you are interested in more information about this school, please contact Rosemary at 925-377-0789 or visit their web site at www.orionacademy.org

Newbury Park, California
Passageway School—

Day School for kids with Asperger syndrome.

Our Philosophy is to work with kids in small classroom settings. (4 to 7 kids per class). Tailor their education to their IEP's and to work individually on their behaviors thru positive reinforcement. Our class day tends to be very structured. We do allow and encourage the kids to develop their individuality, while maintaining classroom discipline. Our discipline methods are developed according to the needs of the child. We prefer to use reward systems that daily and weekly inspire the child to change his or her behavior.

Contact Shirley Juels at 805-375-4950
or e-mail to: PassagewaySchool@aol.com
or, visit their web site at www.passagewayschool.com

Bethlehem, Connecticut
Woodhall School—

Males residential school.

For information contact:

Woodhall School
PO Box 550, Harrison Lane
Bethlehem, CT 06751-0550
Phone: 203-266-7788

East Haddam, Connecticut
Franklin Academy—

This is a boarding school program.

For more information:

Franklin Academy
106 River Road
East Haddam, CT 06423
Phone:860-873-2700
Fax: 860-873-8861 admission@fa-ct.org
or visit their web site at: www.fa-ct.org

Washington, Connecticut
Glenholme School—

The Glenholme School is a boarding school for "special needs clients situated on over 100 idyllic acres of Connecticut countryside. Kids ages 8-16, at admission, who need a highly structured learning environment can prosper in this safe, nurturing school. It provides a value-based program to show clients the way to academic success."

Visit their web site at: http://www.theglenholmeschool.org/os

Melbourne, Florida
The College Internship Program—

"The College Internship Program at the Brevard Center provides individualized, post-secondary academic, internship and independent living experiences for young adults with Aspergers and Nonverbal learning differences. With our support and direction, clients learn to realize and develop their potential."

For information about their program visit their web site at: www.brevardcenter.org

Carbondale, Illinois
Brehm Preparatory School—

"Empowering Clients with Complex Learning Disabilities to Optimize their full potential."

For more information contact:

Brehm Preparatory School
1245 East Grand Avenue
Carbondale, IL 62901
618.457.0371
fax 618.529.1248
Email to: brehm1@brehm.org
Visit their web site at: www.brehm.org

Baltimore, Maryland
The Millennium School Opening Fall of 2004—

The Millennium Day School in Baltimore, Maryland will open its doors in the Fall of 2004. The school will have a fully integrated social skills curriculum and will serve the needs of kids with Aspergers and related disorders in an inclusive environment. For further information, visit their web site at www.MillenniumSchool.com

Boston, Massachusetts
McLean Hospital - Kennedy Hope Academy—

The Kennedy Hope Academy is a 13-bed residential school providing intensive treatment for kids with pervasive developmental disorders who have serious psychiatric illness or behavior problems.

If you are interested in more information about this program, please contact:
David Rourke, MS
Program Manager
(617) 779-1670
or visit our website at www.mclean.harvard.edu/patient/child/kha.php

Belmont, Massachusetts
Pathways Academy—

McLean Hospital
115 Mill Street
Belmont, Massachusetts 02178
617-855-2847
For more information send an e-mail to Sarah Medeiros at medeirs@mcleanpo.Mclean.org
Visit their web site at www.mclean.harvard.edu/cns/pathways.htm

This school is for AS kids from ages 1st -12th Grade.

McLean Hospital is a Teaching Facility of Harvard Medical School and an Affiliate of Massachusetts General Hospital

Sudbury, Massachusetts
Corwin Russell School—

"The Corwin-Russell School at Broccoli Hall is an independent school for high-potential clients 11-19 years old with varied learning styles, average to superior intelligence, exceptional creativity, attentional issues, untapped interests, talents, and strengths, and disparity between innate ability and past production."

For more information:

Phone: 978-369-1444
E-mail: brochall@aol.com
Or visit their web site at: www.corwin-russell.org

New York, New York
LearningSpring Academy—

A Model School for High-Functioning Elementary School Kids Grades K-5 with Asperger Syndrome and Pervasive Developmental Disorders

For more information visit their webpage at http://www.learningspring.org

Boiceville, New York
ASPIE: The School for Autistic Strenth, Purpose, and Independence in Education—

This Day school is for teens with AS, HFA, PDD and cousin disabilities. Serves clients within busing are of Boiceville, New York.

For more information contact:
Valerie Paradiz, Ph.D.
Program Director
ASPlE
The School for Autistic Strength, Purpose and Independence in Education
P.O. Box 489
Boiceville, NY 12412
(845) 657-7201
email to: info@aspieschool.org
Visit their web site at: www.aspieschool.org

Huntington Station, Long Island, New York
Gersh Academy—

The I Am I Can Program was developed for high functioning clients with Neurobiological Disorders (NBD), including Attention Deficit Hyperactivity Disorder, Tourette’s Syndrome, Aspergers, Childhood-Onset Bipolar Disorder, Obsessive-Compulsive Disorder, Anxiety Disorder and Depression. The program uses a cognitive behavioral approach, allowing clients to better understand their neurobiological limitations and how to self-manage and regulate their symptoms. The Elementary Program (K-5) is a 6:1:1 ratio and the Middle School (6-8) and High School Programs have an 8:1:1 ratio. The Gersh Academy High School is located in Hauppauge. Gersh Academy follows the New York State curriculum and standards.

For More Information Contact:
West Hills Montessori School
165 Pidgeon Hill Road
Huntington Station, NY 11746
Phone: (631) 385-3342
Web site: www.gershacademy.org

Cherry Hill, New Jersey and Medford Lakes, New Jersey
Y.A.L.E. School—

The Y.A.L.E. School offers specialized progarm options for kids with Aspergers. Serves kids ages 8-15. This program offers rich academic environment, speech and language services, social skill training and postive motivational systems.

For additional program information or to schedule a program tour, contact Jim Conley at 856-795-3566 ext. 106 or Dr. Mieke Gooseens at 856-795.3566, ext. 309

Rindge, New Hamsphire
Hampshire Country School—

From their web site:

"...The best candidates for Hampshire Country School are those who will respond to the attention of its faculty, seek the help of its teachers, enjoy being part of a small school community, and enjoy its outdoor activities. Most clients, however, have not had such success elsewhere, and many parents are quite discouraged by the time they first inquire about the school. Many clients have had trouble fitting into the structure of larger schools and many have had difficulty adapting to the demands of peers. Many are more comfortable with adults than with age mates.

Hampshire Country School can provide appropriate structure and support for certain clients with nonverbal learning disabilities, Tourette Syndrome, ADHD, Asperger Syndrome, and other disorders; but it is not a treatment program. It is designed instead to involve and educate the bright, active, and interested side of each child rather than to dwell on the student's limitations and difficulties. Clients who experiment with alcohol, tobacco, or illegal drugs are not accepted; and the school is not set up for clients who are primarily oppositional or confrontational..."

For more information, visit their web site at: www.hampshirecountryschool.org

Toledo, Ohio
LHS Maumee Youth Center for Asperger’s Disorder—

A new residential center for kids and youth ages six to eighteen-plus who have been diagnosed with Asperger’s Disorder is opening. The Center is situated on 13 acres near Neapolis, Ohio, south of Toledo, Ohio. LHS Family and Youth Services, Inc. is a social service agency with headquarters in Toledo, Ohio, serving kids, youth and families through community-based residential treatment group homes and other services.

The LHS Maumee Youth Center for Asperger’s Disorder serves up to twenty kids and youth in its residential program. Most kids and youth placed in the residential setting will tend to be aggressive and have multiple diagnosis/needs.

All staff, in addition to their undergraduate and graduate work, are trained in the core competencies of residential child and youth care and will be trained by experts in the autistic spectrum disorder field.

For additional information on the Center, or to make an inquiry regarding a potential referral to the Center, please contact Steve Plottner at splot@infinet.com or by phone at 419-798-9382.

Houston, Texas
The Monarch School—

The Monarch School is a therapeutic day school located in Houston. Their prime mission is to help kids develop executive functioning skills, relationship development and ownership of learning and to prepare all of the clients for success.

About 1/4 of the clients are AS with the other's having ADHD, LD, Bi-polar disorder, Tourettes and other dx.

The school is for kids from 4-16 and they will be adding one additional HS year each year for the next two years. It is a non-profit, private school and the staff to student ratio is 20 staff to 60 clients.

For more information visit their website at www.monarchschool.org

Friends of Special Schools at http://specialneedskids.com

Friends of Special Schools is a non-profit organization formed in 1997 by parents and friends of kids with special needs. This webpage is a wonderful resource for information on special needs schools. In addition to links to many schools and programs, they also offer a small scholarship fund.

Autism: Comprehensive Overview

Autism is a brain development disorder that is characterized by impaired social interaction and communication, and restricted and repetitive behavior, all starting before a youngster is three years old. This set of signs distinguishes autism from milder Autism Spectrum Disorders (ASD) such as pervasive developmental disorder not otherwise specified (PDD-NOS).

Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether Autism Spectrum Disorders is explained more by multigene interactions or by rare mutations. In rare cases, autism is strongly associated with agents that cause birth defects. Other proposed causes, such as childhood vaccines, are controversial; the vaccine hypotheses lack convincing scientific evidence. Most recent reviews estimate a prevalence of one to two cases per 1,000 individuals for autism, and about six per 1,000 for Autism Spectrum Disorders, with Autism Spectrum Disorders averaging a 4.3:1 male-to-female ratio. The number of individuals known to have autism has increased dramatically since the 1980s, at least partly as a result of changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved.

Autism affects many parts of the brain; how this occurs is not understood. Moms and dads usually notice signs in the first two years of their youngster's life. Early behavioral or cognitive intervention can help kids gain self-care, social, and communication skills. There is no known cure. Few kids with autism live independently after reaching adulthood, but some become successful, and an autistic culture has developed, with some seeking a cure and others believing that autism is a condition rather than a disorder.

Classification—

Autism is a brain development disorder that first appears during infancy or childhood, and generally follows a steady course without remission. Impairments result from maturation-related changes in various systems of the brain. Autism is one of the five pervasive developmental disorders (PDD), which are characterized by widespread abnormalities of social interactions and communication, and severely restricted interests and highly repetitive behavior.

Of the other four PDD forms, Aspergers is closest to autism in signs and likely causes; Rett syndrome and childhood disintegrative disorder share several signs with autism, but may have unrelated causes; PDD not otherwise specified (PDD-NOS) is diagnosed when the criteria are not met for a more specific disorder. Unlike autism, Aspergers has no substantial delay in language development. The terminology of autism can be bewildering, with autism, Aspergers and PDD-NOS often called the autism spectrum disorders (ASD) or sometimes the autistic disorders, whereas autism itself is often called autistic disorder, childhood autism, or infantile autism. In this article, autism refers to the classic autistic disorder; in clinical practice, though, autism, Autism Spectrum Disorders, and PDD are often used interchangeably. Autism Spectrum Disorders, in turn, is a subset of the broader autism phenotype (BAP), which describes individuals who may not have Autism Spectrum Disorders but do have autistic-like traits, such as avoiding eye contact.

The manifestations of autism cover a wide spectrum, ranging from individuals with severe impairments—who may be silent, mentally disabled, and locked into hand flapping and rocking—to less impaired individuals who may have active but distinctly odd social approaches, narrowly focused interests, and verbose, pedantic communication. Sometimes the syndrome is divided into low-, medium- and high-functioning autism (LFA, MFA, and HFA), based on IQ thresholds, or on how much support the individual requires in daily life; these subdivisions are not standardized and are controversial. Autism can also be divided into syndromal and non-syndromal autism, where the former is associated with severe or profound mental retardation or a congenital syndrome with physical symptoms, such as tuberous sclerosis. Although individuals with Aspergers tend to perform better cognitively than those with autism, the extent of the overlap between Aspergers, HFA, and non-syndromal autism is unclear.

Some studies have reported diagnoses of autism in kids due to a loss of language or social skills after 14 months of age, as opposed to a failure to make progress. Several terms are used for this phenomenon, including regressive autism, setback autism, and developmental stagnation. The validity of this distinction remains controversial; it is possible that regressive autism is a specific subtype.

The inability to identify biologically meaningful sub-populations has hampered research into causes. It has been proposed to classify autism using genetics as well as behavior, with the name Type 1 autism denoting rare autism cases that test positive for a mutation in the gene contactin associated protein-like (CNTNAP).

Characteristics—

Autism is distinguished by a pattern of symptoms rather than one single symptom. The main characteristics are impairments in social interaction, impairments in communication, restricted interests and repetitive behavior. Other aspects, such as atypical eating, are also common but are not essential for diagnosis. Individual symptoms of autism occur in the general population and appear not to associate highly, without a sharp line separating pathological severity from common traits.

Social development:

Individuals with autism have social impairments and often lack the intuition about others that many individuals take for granted. Noted autistic Temple Grandin described her inability to understand the social communication of neurotypicals, or individuals with normal neural development, as leaving her feeling "like an anthropologist on Mars".

Social impairments become apparent early in childhood and continue through adulthood. Autistic infants show less attention to social stimuli, smile and look at others less often, and respond less to their own name. Autistic toddlers have more striking social deviance; for example, they have less eye contact and anticipatory postures and are more likely to communicate by manipulating another person's hand. Three- to five-year-old autistic kids are less likely to exhibit social understanding, approach others spontaneously, imitate and respond to emotions, communicate non-verbally, and take turns with others. However, they do form attachments to their primary caregivers. They display moderately less attachment security than usual, although this feature disappears in kids with higher mental development or less severe Autism Spectrum Disorders. Older kids and adults with Autism Spectrum Disorders perform worse on tests of face and emotion recognition.

Contrary to common belief, autistic kids do not prefer to be alone. Making and maintaining friendships often proves to be difficult for those with autism. For them, the quality of friendships, not the number of friends, predicts how lonely they are.

There are many anecdotal reports, but few systematic studies, of aggression and violence in individuals with Autism Spectrum Disorders. The limited data suggest that in kids with mental retardation, autism is associated with aggression, destruction of property, and tantrums. Dominick et al. interviewed the moms and dads of kids with Autism Spectrum Disorders and reported that about two-thirds of the kids had periods of severe tantrums and about one-third had a history of aggression, with tantrums significantly more common than in kids with a history of language impairment. A Swedish study found that, of individuals aged or older discharged from hospital with a diagnosis of Autism Spectrum Disorders, those who committed violent crimes were significantly more likely to have other psycho-pathological conditions such as psychosis.

Communication:

About a third to a half of individuals with autism do not develop enough natural speech to meet their daily communication needs. Differences in communication may be present from the first year of life, and may include delayed onset of babbling, unusual gestures, diminished responsiveness, and the de-synchronization of vocal patterns with the caregiver. In the second and third years, autistic kids have less frequent and less diverse babbling, consonants, words, and word combinations; their gestures are less often integrated with words. Autistic kids are less likely to make requests or share experiences, and are more likely to simply repeat others' words (echolalia) or reverse pronouns. Joint attention seems to be necessary for functional speech, and deficits in joint attention seem to distinguish infants with Autism Spectrum Disorders: for example, they may look at a pointing hand instead of the pointed-at object, and they consistently fail to point at objects in order to comment on or share an experience. Autistic kids may have difficulty with imaginative play and with developing symbols into language.

In a pair of studies, high-functioning autistic kids aged – performed equally well, and adults better than individually matched controls at basic language tasks involving vocabulary and spelling. Both autistic groups performed worse than controls at complex language tasks such as figurative language, comprehension and inference. As individuals are often sized up initially from their basic language skills, these studies suggest that individuals speaking to autistic individuals are more likely to overestimate what their audience comprehends.

Repetitive behavior:

Autistic individuals display many forms of repetitive or restricted behavior, which the Repetitive Behavior Scale-Revised (RBS-R) categorizes as follows:
  • Compulsive behavior is intended and appears to follow rules, such as arranging objects in a certain way.
  • Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program.
  • Ritualistic behavior involves the performance of daily activities the same way each time, such as an unvarying menu or dressing ritual. This is closely associated with sameness and an independent validation has suggested combining the two factors.
  • Sameness is resistance to change; for example, insisting that the furniture not be moved or refusing to be interrupted.
  • Self-injury includes movements that injure or can injure the person, such as biting oneself. Dominick et al. reported that self-injury at some point affected about 30% of kids with Autism Spectrum Disorders.
  • Stereotypy is apparently purposeless movement, such as hand flapping, head rolling, or body rocking.

No single repetitive behavior seems to be specific to autism, but only autism appears to have an elevated pattern of occurrence and severity of these behaviors.

Other symptoms:

Autistic individuals may have symptoms that are independent of the diagnosis, but that can affect the individual or the family. An estimated 0.5% to 10% of individuals with ASD show unusual abilities, ranging from splinter skills such as the memorization of trivia to the extraordinarily rare talents of prodigious autistic savants.

Unusual responses to sensory stimuli are more common and prominent in autistic kids, although there is no good evidence that sensory symptoms differentiate autism from other developmental disorders. Differences are greater for under-responsivity (for example, walking into things) than for over-responsivity (for example, distress from loud noises) or for seeking (for example, rhythmic movements). Several studies have reported associated motor problems that include poor muscle tone, poor motor planning, and toe walking; Autism Spectrum Disorders is not associated with severe motor disturbances.

Atypical eating behavior occurs in about three-quarters of kids with Autism Spectrum Disorders, to the extent that it was formerly a diagnostic indicator. Selectivity is the most common problem, although eating rituals and food refusal also occur; this does not appear to result in malnutrition. Although some kids with autism also have gastrointestinal (GI) symptoms, there is a lack of published rigorous data to support the theory that autistic kids have more or different GI symptoms than usual; studies report conflicting results, and the relationship between GI problems and Autism Spectrum Disorders is unclear.

Sleep problems are known to be more common in kids with developmental disabilities, and there is some evidence that kids with Autism Spectrum Disorders are more likely to have even more sleep problems than those with other developmental disabilities; autistic kids may experience problems including difficulty in falling asleep, frequent nocturnal awakenings, and early morning awakenings. Dominick et al. found that about two-thirds of kids with Autism Spectrum Disorders had a history of sleep problems.

moms and dads of kids with Autism Spectrum Disorders have higher levels of stress. Siblings of kids with Autism Spectrum Disorders report greater admiration of and less conflict with the affected sibling; siblings of individuals with Autism Spectrum Disorders have greater risk of negative well-being and poorer sibling relationships as adults.

Causes—

Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether Autism Spectrum Disorders is explained more by multigene interactions or by rare mutations with major effects. Early studies of twins estimated heritability explains more than 90% of the risk of autism, assuming a shared environment and no other genetic or medical syndromes. However, most of the mutations that increase autism risk have not been identified. Typically, autism cannot be traced to a Mendelian (single-gene) mutation or to a single chromosome abnormality like Angelman syndrome or fragile X syndrome, and none of the genetic syndromes associated with Autism Spectrum Disorders has been shown to selectively cause Autism Spectrum Disorders. There may be significant interactions among mutations in several genes, or between the environment and mutated genes. Numerous candidate genes have been located, with only small effects attributable to any particular gene. The large number of autistic individuals with unaffected family members may result from copy number variations—spontaneous deletions or duplications in genetic material during meiosis. Hence, a substantial fraction of autism cases may be traceable to genetic causes that are highly heritable but not inherited: that is, the mutation that causes the autism is not present in the parental genome.

All known teratogens (agents that cause birth defects) related to the risk of autism appear to act during the first eight weeks from conception, and though this does not exclude the possibility that autism can be initiated or affected later, it is strong evidence that autism arises very early in development. Although evidence for other environmental causes is anecdotal and has not been confirmed by reliable studies, extensive searches are underway. Environmental factors that have been claimed to contribute to or exacerbate autism, or may be important in future research, include certain foods, infectious disease, heavy metals, solvents, diesel exhaust, PCBs, phthalates and phenols used in plastic products, pesticides, brominated flame retardants, alcohol, smoking, illicit drugs, vaccines, and prenatal stress. Although moms and dads may first become aware of autistic symptoms in their youngster around the time of a routine vaccination, and parental concern about vaccines has led to a decreasing uptake of childhood immunizations and an increasing likelihood of measles outbreaks, there is overwhelming scientific evidence showing no causal association between the measles-mumps-rubella vaccine and autism, and there is no scientific evidence that the vaccine preservative thiomersal helps cause autism.

Mechanism—

Despite extensive investigation, how autism occurs is not well understood. Its mechanism can be divided into two areas: the patho-physiology of brain structures and processes associated with autism, and the neuro-psychological linkages between brain structures and behaviors. The behaviors appear to have multiple patho-physiologies.

Pathophysiology:

Autism appears to result from developmental factors that affect many or all functional brain systems, and to disturb the course of brain development more than the final product. Neuro-anatomical studies and the associations with teratogens strongly suggest that autism's mechanism includes alteration of brain development soon after conception. This localized anomaly appears to start a cascade of pathological events in the brain that are significantly influenced by environmental factors. Although many major structures of the human brain have been implicated, almost all postmortem studies have been of individuals who also had mental retardation, making it difficult to draw conclusions. Brain weight and volume and head circumference tend to be greater in autistic kids. The cellular and molecular bases of pathological early overgrowth are not known, nor is it known whether the overgrown neural systems cause autism's characteristic signs. Current hypotheses include:
  • Abnormal formation of synapses and dendritic spines, for example, by modulation of the neurexin-neuroligin cell-adhesion system.
  • An excess of neurons that causes local overconnectivity in key brain regions.
  • Disturbed neuronal migration during early gestation.
  • Unbalanced excitatory-inhibitory networks.

Interactions between the immune system and the nervous system begin early during embryogenesis, and successful neuro-development depends on a balanced immune response. Several symptoms consistent with a poorly regulated immune response have been reported in autistic kids. It is possible that aberrant immune activity during critical periods of neuro-development is part of the mechanism of some forms of Autism Spectrum Disorders. As auto-antibodies have not been associated with pathology, are found in diseases other than Autism Spectrum Disorders, and are not always present in Autism Spectrum Disorders, the relationship between immune disturbances and autism remains unclear and controversial.

Several neurotransmitter abnormalities have been detected in autism, notably increased blood levels of serotonin. Whether these lead to structural or behavioral abnormalities is unclear. Some data suggest an increase in several growth hormones; other data argue for diminished growth factors. Also, some inborn errors of metabolism are associated with autism but probably account for less than 5% of cases.

The mirror neuron system (MNS) theory of autism hypothesizes that distortion in the development of the MNS interferes with imitation and leads to autism's core features of social impairment and communication difficulties. The MNS operates when an animal performs an action or observes another animal of the same species perform the same action. The MNS may contribute to an individual's understanding of other individuals by enabling the modeling of their behavior via embodied simulation of their actions, intentions, and emotions. Several studies have tested this hypothesis by demonstrating structural abnormalities in MNS regions of individuals with Autism Spectrum Disorders, delay in the activation in the core circuit for imitation in individuals with Aspergers, and a correlation between reduced MNS activity and severity of the syndrome in kids with Autism Spectrum Disorders. However, individuals with autism also have abnormal brain activation in many circuits outside the MNS and the MNS theory does not explain the normal performance of autistic kids on imitation tasks that involve a goal or object.

In autism there is evidence for reduced functional connectivity of the default mode network, a large-scale brain network involved in social and emotional processing, with intact connectivity of the task-positive network, used in sustained attention and goal-directed thinking. The two networks are not negatively correlated in individuals with autism, suggesting an imbalance in toggling between the two networks, possibly reflecting a disturbance of self-referential thought. A brain-imaging study found a specific pattern of signals in the cingulate cortex which differs in individuals with Autism Spectrum Disorders.

The under-connectivity theory of autism hypothesizes that autism is marked by under-functioning high-level neural connections and synchronization, along with an excess of low-level processes. Evidence for this theory has been found in functional neuro-imaging studies on autistic individuals and by a brain wave study that suggested that adults with Autism Spectrum Disorders have local over-connectivity in the cortex and weak functional connections between the frontal lobe and the rest of the cortex. Other evidence suggests the under-connectivity is mainly within each hemisphere of the cortex and that autism is a disorder of the association cortex.

From studies based on event-related potentials, transient changes to the brain's electrical activity in response to stimuli, there is considerable evidence for differences in autistic individuals with respect to attention, orientation to auditory and visual stimuli, novelty detection, language and face processing, and information storage; several studies have found a preference for non-social stimuli.

Neuropsychology:

Two major categories of cognitive theories have been proposed about the links between autistic brains and behavior...

The first category focuses on deficits in social cognition. Hyper-systemizing hypothesizes that autistic individuals can systematize—that is, they can develop internal rules of operation to handle internal events—but are less effective at empathizing by handling events generated by other agents. It extends the extreme male brain theory, which hypothesizes that autism is an extreme case of the male brain, defined psychometrically as individuals in whom systemizing is better than empathizing. This in turn is related to the earlier theory of mind, which hypothesizes that autistic behavior arises from an inability to ascribe mental states to oneself and others. The theory of mind is supported by autistic kids' atypical responses to the Sally-Anne test for reasoning about others' motivations, and is mapped well from the mirror neuron system theory of autism.

The second category focuses on nonsocial or general processing. Executive dysfunction hypothesizes that autistic behavior results in part from deficits in working memory, planning, inhibition, and other forms of executive function. Tests of core executive processes such as eye movement tasks indicate improvement from late childhood to adolescence, but performance never reaches typical adult levels. A strength of the theory is predicting stereotyped behavior and narrow interests; a weakness is that executive function deficits have not been found in young autistic kids. Weak central coherence theory hypothesizes that a limited ability to see the big picture underlies the central disturbance in autism. One strength of this theory is predicting special talents and peaks in performance in autistic individuals. A related theory—enhanced perceptual functioning—focuses more on the superiority of locally oriented and perceptual operations in autistic individuals. These theories map well from the under-connectivity theory of autism.

Neither category is satisfactory on its own; social cognition theories poorly address autism's rigid and repetitive behaviors, while the nonsocial theories have difficulty explaining social impairment and communication difficulties. A combined theory based on multiple deficits may prove to be more useful.

Screening—

About half of moms and dads of kids with Autism Spectrum Disorders notice their youngster's unusual behaviors by age months, and about four-fifths notice by age months. As postponing treatment may affect long-term outcome, any of the following signs is reason to have a youngster evaluated by a specialist without delay:
  • Any loss of any language or social skills, at any age.
  • No babbling by 12 months.
  • No gesturing (pointing, waving goodbye, etc.) by 12 months.
  • No single words by 16 months.
  • No two-word spontaneous phrases (other than instances of echolalia) by 24 months.

The American Academy of Pediatrics recommends that all kids be screened for Autism Spectrum Disorders at the 18- and 24- month well-youngster doctor visits, using autism-specific formal screening tests. In contrast, the UK National Screening Committee recommends against screening for Autism Spectrum Disorders in the general population, because screening tools have not been fully validated and interventions lack sufficient evidence for effectiveness. Screening tools include the Modified Checklist for Autism in Toddlers (M-CHAT), the Early Screening of Autistic Traits Questionnaire, and the First Year Inventory; initial data on M-CHAT and its predecessor CHAT on kids aged – months suggests that it is best used in a clinical setting and that it has low sensitivity (many false-negatives) but good specificity (few false-positives). It may be more accurate to precede these tests with a broadband screener that does not distinguish Autism Spectrum Disorders from other developmental disorders. Screening tools designed for one culture's norms for behaviors like eye contact may be inappropriate for a different culture. Genetic screening for autism is generally still impractical.

Diagnosis—

Diagnosis is based on behavior, not cause or mechanism. Autism is defined in the DSM-IV-TR as exhibiting at least six symptoms total, including at least two symptoms of qualitative impairment in social interaction, at least one symptom of qualitative impairment in communication, and at least one symptom of restricted and repetitive behavior. Sample symptoms include lack of social or emotional reciprocity, stereotyped and repetitive use of language or idiosyncratic language, and persistent preoccupation with parts of objects. Onset must be prior to age three years, with delays or abnormal functioning in either social interaction, language as used in social communication, or symbolic or imaginative play. The disturbance must not be better accounted for by Rett syndrome or childhood disintegrative disorder. ICD- uses essentially the same definition.

Several diagnostic instruments are available. Two are commonly used in autism research: the Autism Diagnostic Interview-Revised (ADI-R) is a semi-structured parent interview, and the Autism Diagnostic Observation Schedule (ADOS) uses observation and interaction with the youngster. The Childhood Autism Rating Scale (CARS) is used widely in clinical environments to assess severity of autism based on observation of kids.

A pediatrician commonly performs a preliminary investigation by taking developmental history and physically examining the youngster. If warranted, diagnosis and evaluations are conducted with help from Autism Spectrum Disorders specialists, observing and assessing cognitive, communication, family, and other factors using standardized tools, and taking into account any associated medical conditions. A pediatric neuro-psychologist is often asked to assess behavior and cognitive skills, both to aid diagnosis and to help recommend educational interventions. A differential diagnosis for Autism Spectrum Disorders at this stage might also consider mental retardation, hearing impairment, and a specific language impairment such as Landau-Kleffner syndrome.

Clinical genetics evaluations are often done once Autism Spectrum Disorders is diagnosed, particularly when other symptoms already suggest a genetic cause. Although genetic technology allows clinical geneticists to link an estimated 40 % of cases to genetic causes, consensus guidelines in the U.S. and UK are limited to high-resolution chromosome and fragile X testing. A genotype-first model of diagnosis has been proposed, which would routinely assess the genome's copy number variations. As new genetic tests are developed several ethical, legal, and social issues will emerge. Commercial availability of tests may precede adequate understanding of how to use test results, given the complexity of autism's genetics. Metabolic and neuro-imaging tests are sometimes helpful, but are not routine.

Autism Spectrum Disorders can sometimes be diagnosed by age 14 months, although diagnosis becomes increasingly stable over the first three years of life: for example, a one-year-old who meets diagnostic criteria for Autism Spectrum Disorders is less likely than a three-year-old to continue to do so a few years later. In the UK the National Autism Plan for Children recommends at most 30 weeks from first concern to completed diagnosis and assessment, though few cases are handled that quickly in practice. A 2006 U.S. study found the average age of first evaluation by a qualified professional was 48 months and of formal Autism Spectrum Disorders diagnosis was 61 months, reflecting an average 13-month delay, all far above recommendations. Although the symptoms of autism and Autism Spectrum Disorders begin early in childhood, they are sometimes missed; grown-ups may seek diagnoses to help them or their friends and family understand themselves, to help their employers make adjustments, or in some locations to claim disability living allowances or other benefits.

Under-diagnosis and over-diagnosis are problems in marginal cases, and much of the recent increase in the number of reported Autism Spectrum Disorders cases is likely due to changes in diagnostic practices. The increasing popularity of drug treatment options and the expansion of benefits have given providers incentives to diagnose Autism Spectrum Disorders, resulting in some over-diagnosis of kids with uncertain symptoms. Conversely, the cost of screening and diagnosis and the challenge of obtaining payment can inhibit or delay diagnosis. It is particularly hard to diagnose autism among the visually impaired, partly because some of its diagnostic criteria depend on vision, and partly because autistic symptoms overlap with those of common blindness syndromes.

Management—

The main goals of treatment are to lessen associated deficits and family distress, and to increase quality of life and functional independence. No single treatment is best and treatment is typically tailored to the youngster's needs. Intensive, sustained special education programs and behavior therapy early in life can help kids acquire self-care, social, and job skills, and often improve functioning and decrease symptom severity and maladaptive behaviors; claims that intervention by age two to three years is crucial are not substantiated. Available approaches include applied behavior analysis (ABA), developmental models, structured teaching, speech and language therapy, social skills therapy, and occupational therapy. Educational interventions have some effectiveness in kids: intensive ABA treatment has demonstrated effectiveness in enhancing global functioning in preschool kids and is well-established for improving intellectual performance of young kids.

Neuro-psychological reports are often poorly communicated to educators, resulting in a gap between what a report recommends and what education is provided. The limited research on the effectiveness of adult residential programs shows mixed results.

Many drugs are used to treat problems associated with Autism Spectrum Disorders. More than half of U.S. kids diagnosed with Autism Spectrum Disorders are prescribed psychoactive drugs or anti-convulsants, with the most common drug classes being antidepressants, stimulants, and anti-psychotics. Aside from anti-psychotics, there is scant reliable research about the effectiveness or safety of drug treatments for adolescents and adults with Autism Spectrum Disorders. A person with Autism Spectrum Disorders may respond atypically to drugs, the drugs can have adverse effects, and no known medication relieves autism's core symptoms of social and communication impairments.

Although many alternative therapies and interventions are available, few are supported by scientific studies. Treatment approaches have little empirical support in quality-of-life contexts, and many programs focus on success measures that lack predictive validity and real-world relevance. Scientific evidence appears to matter less to service providers than program marketing, training availability, and parent requests. Though most alternative treatments, such as melatonin, have only mild adverse effects some may place the youngster at risk. A 2008 study found that compared to their peers, autistic males have significantly thinner bones if on casein-free diets; in 2005, botched chelation therapy killed a five-year-old youngster with autism.

Treatment is expensive; indirect costs are more so. A U.S. study estimated an average cost of $3.2 million in 2003 U.S. dollars for someone born in 2000, with about 10% medical care, 30% extra education and other care, and 60% lost economic productivity. Publicly supported programs are often inadequate or inappropriate for a given youngster, and un-reimbursed out-of-pocket medical or therapy expenses are associated with likelihood of family financial problems; one 2008 U.S. study found a 14% average loss of annual income in families of kids with Autism Spectrum Disorders, and a related study found that Autism Spectrum Disorders is associated with higher probability that youngster care problems will greatly affect parental employment. After childhood, key treatment issues include residential care, job training and placement, sexuality, social skills, and estate planning.

Prognosis—

There is no known cure. Kids recover occasionally, sometimes after intensive treatment and sometimes not; it is not known how often this happens. Most kids with autism lack social support, meaningful relationships, future employment opportunities or self-determination. Although core difficulties remain, symptoms often become less severe in later childhood. Few high-quality studies address long-term prognosis. Some adults show modest improvement in communication skills, but a few decline; no study has focused on autism after midlife. Acquiring language before age six, having an IQ above 50, and having a marketable skill all predict better outcomes; independent living is unlikely with severe autism. A 2004 British study of 68 adults who were diagnosed before 1980 as autistic kids with IQ above 50 found that 12% achieved a high level of independence as adults, 10% had some friends and were generally in work but required some support, 19% had some independence but were generally living at home and needed considerable support and supervision in daily living, 46% needed specialist residential provision from facilities specializing in Autism Spectrum Disorders with a high level of support and very limited autonomy, and 12% needed high-level hospital care. A 2005 Swedish study of 78 adults that did not exclude low IQ found worse prognosis; for example, only 4% achieved independence. A 2008 Canadian study of 48 young adults diagnosed with Autism Spectrum Disorders as preschoolers found outcomes ranging through poor (46%), fair (32%), good (17%), and very good (4%); 56% of these young adults had been employed at some point during their lives, mostly in volunteer, sheltered or part time work. Changes in diagnostic practice and increased availability of effective early intervention make it unclear whether these findings can be generalized to recently diagnosed kids.

Epidemiology—

Most recent reviews tend to estimate a prevalence of 1–2 per 1,000 for autism and close to 6 per 1,000 for Autism Spectrum Disorders; because of inadequate data, these numbers may underestimate ASDs true prevalence. PDD-NOS cases are the vast majority of Autism Spectrum Disorders, Aspergers prevalence is about 0.3 per 1,000, and the remaining Autism Spectrum Disorders forms are much more rare. The number of reported cases of autism increased dramatically in the 1990s and early 2000s. This increase is largely attributable to changes in diagnostic practices, referral patterns, availability of services, age at diagnosis, and public awareness, though unidentified contributing environmental risk factors cannot be ruled out. It is unknown whether autism's prevalence increased during the same period; a real increase would suggest directing more attention and funding toward changing environmental factors instead of continuing to focus on genetics.

The risk of autism is associated with several prenatal and perinatal risk factors. A review of risk factors found associated parental characteristics that included advanced maternal age, advanced paternal age, and maternal place of birth outside Europe or North America, and also found associated obstetric conditions that included low birth weight and gestation duration, and hypoxia during childbirth.

Autism is associated with several other conditions:
  • Epilepsy, with variations in risk of epilepsy due to age, cognitive level, and type of language disorder.
  • Genetic disorders. About 10–15% of autism cases have an identifiable Mendelian (single-gene) condition, chromosome abnormality, or other genetic syndrome, and Autism Spectrum Disorders is associated with several genetic disorders.
  • Maleness. Males are at higher risk for autism than females. The Autism Spectrum Disorders sex ratio averages 4.3:1 and is greatly modified by cognitive impairment: it may be close to 2:1 with mental retardation and more than 5.5:1 without.
  • Mental retardation. The fraction of autistic individuals who also meet criteria for mental retardation has been reported as anywhere from 25% to 70%, a wide variation illustrating the difficulty of assessing autistic intelligence. For Autism Spectrum Disorders other than autism, the association with mental retardation is much weaker.
  • Minor physical anomalies are significantly increased in the autistic population.
  • Preempted diagnoses. Although the DSM-IV rules out concurrent diagnosis of many other conditions along with autism, the full criteria for ADHD, Tourette syndrome, and other of these conditions are often present and these comorbid diagnoses are increasingly accepted.
  • Several metabolic defects, such as phenylketonuria, are associated with autistic symptoms.

Asperger's Syndrome: Comprehensive Overview

Aspergers (also called Asperger's Syndrome, Asperger's Disorder, Asperger's or AS) is the Autism Spectrum Disorder (ASD) in which there is no general delay in language or cognitive development. Like the more severe Autism Spectrum Disorders, it is characterized by difficulties in social interaction and restricted, stereotyped patterns of behavior and interests. Although not mentioned in standard diagnostic criteria for Aspergers, physical clumsiness and atypical use of language are frequently reported.

Aspergers is named after Austrian pediatrician Hans Asperger who, in 1944, described kids in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy. Fifty years later, Aspergers was standardized as a diagnosis, but questions about many aspects of Aspergers remain. For example, there is lingering doubt about the distinction between Aspergers and High-Functioning Autism (HFA); partly due to this, the prevalence of Aspergers is not firmly established. The exact cause of Aspergers is unknown, although research supports the likelihood of a genetic basis; brain imaging techniques have not identified a clear common pathology.

There is no single management for Aspergers, and the effectiveness of particular interventions is supported by only limited data. Intervention is aimed at improving symptoms and function. The mainstay of management is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and physical clumsiness. Most people with Aspergers can learn to cope with their differences, but may continue to need moral support and encouragement to maintain an independent life. Researchers and people with Aspergers have advocated a shift in attitudes toward the view that Aspergers is a difference, rather than a disability that must be treated or cured.

Classification—

Aspergers is one of the Autism Spectrum Disorders (ASD) or Pervasive Developmental Disorders (PDD), which are a spectrum of psychological conditions that are characterized by abnormalities of social interaction and communication that pervade the individual's functioning, and by restricted and repetitive interests and behavior. Like other psychological development disorders, Autism Spectrum Disorder begins in infancy or childhood, has a steady course without remission or relapse, and has impairments that result from maturation-related changes in various systems of the brain. Autism Spectrum Disorder, in turn, is a subset of the broader autism phenotype (BAP), which describes people who may not have Autism Spectrum Disorder but do have autistic-like traits, such as social deficits. Of the other four Autism Spectrum Disorder forms, autism is the most similar to Aspergers in signs and likely causes but its diagnosis requires impaired communication and allows delay in cognitive development; Rett syndrome and childhood disintegrative disorder share several signs with autism, but may have unrelated causes; and pervasive developmental disorder not otherwise specified (PDD-NOS) is diagnosed when the criteria for a more specific disorder are unmet. The extent of the overlap between Aspergers and high-functioning autism (HFA—autism unaccompanied by mental retardation) is unclear. The current Autism Spectrum Disorder classification may not reflect the true nature of the conditions.

Characteristics—

A pervasive developmental disorder, Aspergers is distinguished by a pattern of symptoms rather than a single symptom. It is characterized by qualitative impairment in social interaction, by stereotyped and restricted patterns of behavior, activities and interests, and by no clinically significant delay in cognitive development or general delay in language. Intense preoccupation with a narrow subject, one-sided verbosity, restricted prosody, and physical clumsiness are typical of the condition, but are not required for diagnosis.

Social Interaction—

The lack of demonstrated empathy is possibly the most dysfunctional aspect of Aspergers. People with Aspergers experience difficulties in basic elements of social interaction, which may include a failure to develop friendships or to seek shared enjoyments or achievements with others (for example, showing others objects of interest); a lack of social or emotional reciprocity; and impaired nonverbal behaviors in areas such as eye contact, facial expression, posture, and gesture.

Unlike those with autism, people with Aspergers are not usually withdrawn around others; they approach others, even if awkwardly, for example by engaging in a one-sided, long-winded speech about a favorite topic while being oblivious to the listener's feelings or reactions, such as signs of boredom or haste to leave. This social awkwardness has been called "active but odd". This failure to react appropriately to social interaction may appear as disregard for other people's feelings, and may come across as insensitive. The cognitive ability of kids with Aspergers often lets them articulate social norms in a laboratory context, where they may be able to show a theoretical understanding of other people’s emotions; they typically have difficulty acting on this knowledge in fluid, real-life situations, however. People with Aspergers may analyze and distill their observation of social interaction into rigid behavioral guidelines and apply these rules in awkward ways—such as forced eye contact—resulting in demeanor that appears rigid or socially naive. Childhood desires for companionship can be numbed through a history of failed social encounters.

The hypothesis that people with Aspergers are predisposed to violent or criminal behavior has been investigated but is not supported by data. More evidence suggests kids with Aspergers are victims rather than victimizers.

Restricted and Repetitive Interests and Behavior—

People with Aspergers often display intense interests, such as this boy's fascination with molecular structure.

People with Aspergers often display behavior, interests, and activities that are restricted and repetitive and are sometimes abnormally intense or focused. They may stick to inflexible routines, move in stereotyped and repetitive ways, or preoccupy themselves with parts of objects.

Pursuit of specific and narrow areas of interest is one of the most striking features of Aspergers. People with Aspergers may collect volumes of detailed information on a relatively narrow topic such as dinosaurs or deep fat fryers, without necessarily having genuine understanding of the broader topic. For example, a youngster might memorize camera model numbers while caring little about photography. This behavior is usually apparent by grade school, typically age 5 or 6 in the United States. Although these special interests may change from time to time, they typically become more unusual and narrowly focused, and often dominate social interaction so much that the entire family may become immersed. Because topics such as dinosaurs often capture the interest of kids, this symptom may go unrecognized.

Stereotyped and repetitive motor behaviors are a core part of the diagnosis of Aspergers and other Autism Spectrum Disorders. They include hand movements such as flapping or twisting, and complex whole-body movements. These are typically repeated in longer bursts and look more voluntary or ritualistic than tics, which are usually faster, less rhythmical and less often symmetrical.

Speech and Language—

Although people with Aspergers acquire language skills without significant general delay and their speech typically lacks significant abnormalities, language acquisition and use is often atypical. Abnormalities include verbosity; abrupt transitions; literal interpretations and miscomprehension of nuance; use of metaphor meaningful only to the speaker; auditory perception deficits; unusually pedantic, formal or idiosyncratic speech; and oddities in loudness, pitch, intonation, prosody, and rhythm.

Three aspects of communication patterns are of clinical interest: poor prosody, tangential and circumstantial speech, and marked verbosity. Although inflection and intonation may be less rigid or monotonic than in autism, people with Aspergers often have a limited range of intonation; speech may be unusually fast, jerky or loud. Speech may convey a sense of incoherence; the conversational style often includes monologues about topics that bore the listener, fails to provide context for comments, or fails to suppress internal thoughts. People with Aspergers may fail to monitor whether the listener is interested or engaged in the conversation. The speaker's conclusion or point may never be made, and attempts by the listener to elaborate on the speech's content or logic, or to shift to related topics, are often unsuccessful.

Kids with Aspergers may have an unusually sophisticated vocabulary at a young age and have been colloquially called "little professors", but have difficulty understanding figurative language and tend to use language literally. Kids with Aspergers appear to have particular weaknesses in areas of nonliteral language that include humor, irony, and teasing. Although people with Aspergers usually understand the cognitive basis of humor they seem to lack understanding of the intent of humor to share enjoyment with others. Despite strong evidence of impaired humor appreciation, there are anecdotal reports of humor in people with Aspergers, which challenge theories of humor in Aspergers.

Other—

People with Aspergers may have signs or symptoms that are independent of the diagnosis, but can affect the individual or the family. These include differences in perception and problems with motor skills, sleep, and emotions.

People with Aspergers often have excellent auditory and visual perception. Kids with Autism Spectrum Disorder often demonstrate enhanced perception of small changes in patterns such as arrangements of objects or well-known images; typically this is domain-specific and involves processing of fine-grained features. Conversely, compared to people with HFA, people with Aspergers have deficits in some tasks involving visual-spatial perception, auditory perception, or visual memory. Many accounts of people with Aspergers and Autism Spectrum Disorder report other unusual sensory and perceptual skills and experiences. They may be unusually sensitive or insensitive to sound, light, touch, texture, taste, smell, pain, temperature, and other stimuli, and they may exhibit synesthesia; these sensory responses are found in other developmental disorders and are not specific to Aspergers or to Autism Spectrum Disorder. There is little support for increased fight-or-flight response or failure of habituation in autism; there is more evidence of decreased responsiveness to sensory stimuli, although several studies show no differences.

Hans Asperger’s initial accounts and other diagnostic schemes include descriptions of physical clumsiness. Kids with Aspergers may be delayed in acquiring skills requiring motor dexterity, such as riding a bicycle or opening a jar, and may seem to move awkwardly or feel "uncomfortable in their own skin". They may be poorly coordinated, or have an odd or bouncy gait or posture, poor handwriting, or problems with visual-motor integration. They may show problems with proprioception (sensation of body position) on measures of apraxia (motor planning disorder), balance, tandem gait, and finger-thumb apposition. There is no evidence that these motor skills problems differentiate Aspergers from other high-functioning Autism Spectrum Disorders.

Kids with Aspergers are more likely to have sleep problems, including difficulty in falling asleep, frequent nocturnal awakenings, and early morning awakenings. Aspergers is also associated with high levels of alexithymia, which is difficulty in identifying and describing one's emotions. Although Aspergers, lower sleep quality, and alexithymia are associated, their causative relationship is unclear.

Causes—

Hans Asperger described common symptoms among his clients' family members, especially fathers, and research supports this observation and suggests a genetic contribution to Aspergers. Although no specific gene has yet been identified, multiple factors are believed to play a role in the expression of autism, given the phenotypic variability seen in this group of kids. Evidence for a genetic link is the tendency for Aspergers to run in families and an observed higher incidence of family members who have behavioral symptoms similar to Aspergers but in a more limited form (for example, slight difficulties with social interaction, language, or reading). Most research suggests that all Autism Spectrum Disorders have shared genetic mechanisms, but Aspergers may have a stronger genetic component than autism. There is probably a common group of genes where particular alleles render an individual vulnerable to developing Aspergers; if this is the case, the particular combination of alleles would determine the severity and symptoms for each individual with Aspergers.

A few Autism Spectrum Disorder cases have been linked to exposure to teratogens (agents that cause birth defects) during the first eight weeks from conception. Although this does not exclude the possibility that Autism Spectrum Disorder can be initiated or affected later, it is strong evidence that it arises very early in development. Many environmental factors have been hypothesized to act after birth, but none has been confirmed by scientific investigation.

Mechanism—

Aspergers appears to result from developmental factors that affect many or all functional brain systems, as opposed to localized effects. Although the specific underpinnings of Aspergers or factors that distinguish it from other Autism Spectrum Disorders are unknown, and no clear pathology common to people with Aspergers has emerged, it is still possible that Aspergers mechanism is separate from other Autism Spectrum Disorder. Neuroanatomical studies and the associations with teratogens strongly suggest that the mechanism includes alteration of brain development soon after conception. Abnormal migration of embryonic cells during fetal development may affect the final structure and connectivity of the brain, resulting in alterations in the neural circuits that control thought and behavior. Several theories of mechanism are available; none are likely to provide complete explanations.

The underconnectivity theory hypothesizes underfunctioning high-level neural connections and synchronization, along with an excess of low-level processes. It maps well to general-processing theories such as weak central coherence theory, which hypothesizes that a limited ability to see the big picture underlies the central disturbance in Autism Spectrum Disorder. A related theory—enhanced perceptual functioning—focuses more on the superiority of locally oriented and perceptual operations in autistic people.

The mirror neuron system (MNS) theory hypothesizes that alterations to the development of the MNS interfere with imitation and lead to Asperger's core feature of social impairment. For example, one study found that activation is delayed in the core circuit for imitation in people with Aspergers. This theory maps well to social cognition theories like the theory of mind, which hypothesizes that autistic behavior arises from impairments in ascribing mental states to oneself and others, or hyper-systemizing, which hypothesizes that autistic people can systematize internal operation to handle internal events but are less effective at empathizing by handling events generated by other agents.

Other possible mechanisms include serotonin dysfunction and cerebellar dysfunction.

Screening—

Moms & dads of kids with Aspergers can typically trace differences in their kids' development to as early as 30 months of age. Developmental screening during a routine check-up by a general practitioner or pediatrician may identify signs that warrant further investigation. The diagnosis of Aspergers is complicated by the use of several different screening instruments, including the Aspergers Diagnostic Scale, Autism Spectrum Screening Questionnaire (ASSQ), Childhood Aspergers Test (CAST), Gilliam Asperger’s Disorder Scale (GADS), Krug Asperger’s Disorder Index (KADI), and the Autism Spectrum Quotient (AQ). None have been shown to reliably differentiate between Aspergers and other Autism Spectrum Disorders.

Diagnosis—

Standard diagnostic criteria require impairment in social interaction, and repetitive and stereotyped patterns of behavior, activities and interests, without significant delay in language or cognitive development. Unlike the international standard, U.S. criteria also require significant impairment in day-to-day functioning. Other sets of diagnostic criteria have been proposed by Szatmari et al. and by Gillberg and Gillberg.

Diagnosis is most commonly made between the ages of four and eleven. A comprehensive assessment involves a multidisciplinary team that observes across multiple settings, and includes neurological and genetic assessment as well as tests for cognition, psychomotor function, verbal and nonverbal strengths and weaknesses, style of learning, and skills for independent living. The current "gold standard" in diagnosing Autism Spectrum Disorders combines clinical judgment with the Autism Diagnostic Interview-Revised (ADI-R)—a semistructured parent interview—and the Autism Diagnostic Observation Schedule (ADOS)—a conversation and play-based interview with the youngster. Delayed or mistaken diagnosis can be traumatic for people and families; for example, misdiagnosis can lead to drugs that worsen behavior. Many kids with Aspergers are initially misdiagnosed with attention-deficit hyperactivity disorder (ADHD). Diagnosing adults is more challenging, as standard diagnostic criteria are designed for kids and the expression of Aspergers changes with age. Conditions that must be considered in a differential diagnosis include other Autism Spectrum Disorders, the schizophrenia spectrum, ADHD, obsessive compulsive disorder, depression, semantic pragmatic disorder, nonverbal learning disorder, Tourette syndrome, stereotypic movement disorder and bipolar disorder.

Underdiagnosis and overdiagnosis are problems in marginal cases. The cost of screening and diagnosis and the challenge of obtaining payment can inhibit or delay diagnosis. Conversely, the increasing popularity of drug management options and the expansion of benefits have motivated providers to overdiagnose Autism Spectrum Disorder. There are indications Aspergers has been diagnosed more frequently in recent years, partly as a residual diagnosis for kids of normal intelligence who do not have autism but have social difficulties. There are questions about the external validity of the Aspergers diagnosis, that is, it is unclear whether there is a practical benefit in distinguishing Aspergers from HFA and from PDD-NOS; the same youngster can receive different diagnoses depending on the screening tool.

Management—

Aspergers management attempts to manage distressing symptoms and to teach age-appropriate social, communication and vocational skills that are not naturally acquired during development, with intervention tailored to the needs of the individual youngster, based on multidisciplinary assessment. Although progress has been made, data supporting the efficacy of particular interventions are limited.

The ideal management for Aspergers coordinates therapies that address core symptoms of the disorder, including poor communication skills and obsessive or repetitive routines. While most professionals agree that the earlier the intervention, the better, there is no single best management package. Aspergers management resembles that of other high-functioning Autism Spectrum Disorders except that it takes into account the linguistic capabilities, verbal strengths, and nonverbal vulnerabilities of people with Aspergers. A typical program generally includes:
  • cognitive behavioral therapy to improve stress management relating to anxiety or explosive emotions, and to cut back on obsessive interests and repetitive routines
  • drug therapy, for coexisting conditions such as depression and anxiety
  • occupational or physical therapy to assist with poor sensory integration and motor coordination
  • social communication intervention, which is specialized speech therapy to help with the pragmatics of the give and take of normal conversation
  • the training and support of moms & dads, particularly in behavioral techniques to use in the home
  • the training of social skills for more effective interpersonal interactions

Of the many studies on behavior-based early intervention programs, most are case studies of up to five participants, and typically examine a few problem behaviors such as self-injury, aggression, noncompliance, stereotypies, or spontaneous language; unintended side effects are largely ignored. Despite the popularity of social skills training, its effectiveness is not firmly established. A randomized controlled study of a model for training moms & dads in problem behaviors in their kids with Aspergers showed that moms & dads attending a one-day workshop or six individual lessons reported fewer behavioral problems, while moms & dads receiving the individual lessons reported less intense behavioral problems in their Aspergers kids. Vocational training is important to teach job interview etiquette and workplace behavior to older kids and adults with Aspergers, and organization software and personal data assistants to improve the work and life management of people with Aspergers are useful.

No drugs directly treat the core symptoms of Aspergers. Although research into the efficacy of pharmaceutical intervention for Aspergers is limited, it is essential to diagnose and treat comorbid conditions. Deficits in self-identifying emotions or in observing effects of one's behavior on others can make it difficult for people with Aspergers to see why drug therapy may be appropriate. Drug therapy can be effective in combination with behavioral interventions and environmental accommodations in treating comorbid symptoms such as anxiety, depression, inattention and aggression. The atypical neuroleptic drugs risperidone and olanzapine have been shown to reduce the associated symptoms of Aspergers; risperidone can reduce repetitive and self-injurious behaviors, aggressive outbursts and impulsivity, and improve stereotypical patterns of behavior and social relatedness. The selective serotonin reuptake inhibitors (SSRIs) fluoxetine, fluvoxamine and sertraline have been effective in treating restricted and repetitive interests and behaviors.

Care must be taken with drugs; abnormalities in metabolism, cardiac conduction times, and an increased risk of type 2 diabetes have been raised as concerns with these drugs, along with serious long-term neurological side effects. SSRIs can lead to manifestations of behavioral activation such as increased impulsivity, aggression and sleep disturbance. Weight gain and fatigue are commonly reported side effects of risperidone, which may also lead to increased risk for extrapyramidal symptoms such as restlessness and dystonia and increased serum prolactin levels. Sedation and weight gain are more common with olanzapine, which has also been linked with diabetes. Sedative side-effects in school-age kids have ramifications for classroom learning. People with Aspergers may be unable to identify and communicate their internal moods and emotions or to tolerate side effects that for most people would not be problematic.

Prognosis—

There is some evidence that as many as 20% of kids with Aspergers "grow out" of it, and fail to meet the diagnostic criteria as adults. As of 2006, no studies addressing the long-term outcome of people with Aspergers are available and there are no systematic long-term follow-up studies of kids with Aspergers. People with Aspergers appear to have normal life expectancy but have an increased prevalence of comorbid psychiatric conditions such as depression and anxiety that may significantly affect prognosis. Although social impairment is lifelong, outcome is generally more positive than with people with lower functioning Autism Spectrum Disorders; for example, Autism Spectrum Disorder symptoms are more likely to diminish with time in kids with Aspergers or HFA. Although most students with AS/HFA have average mathematical ability and test slightly worse in mathematics than in general intelligence, some are gifted in mathematics and Aspergers has not prevented some adults from major accomplishments such as winning the Nobel Prize.

Kids with Aspergers may require special education services because of their social and behavioral difficulties although many attend regular education classes. Adolescents with Aspergers may exhibit ongoing difficulty with self-care, organization and disturbances in social and romantic relationships; despite high cognitive potential, most remain at home, although some do marry and work independently. The "different-ness" adolescents experience can be traumatic. Anxiety may stem from preoccupation over possible violations of routines and rituals, from being placed in a situation without a clear schedule or expectations, or from concern with failing in social encounters; the resulting stress may manifest as inattention, withdrawal, reliance on obsessions, hyperactivity, or aggressive or oppositional behavior. Depression is often the result of chronic frustration from repeated failure to engage others socially, and mood disorders requiring management may develop.

Education of families is critical in developing strategies for understanding strengths and weaknesses; helping the family to cope improves outcome in kids. Prognosis may be improved by diagnosis at a younger age that allows for early interventions, while interventions in adulthood are valuable but less beneficial. There are legal implications for people with Aspergers as they run the risk of exploitation by others and may be unable to comprehend the societal implications of their actions.

Epidemiology—

Prevalence estimates vary enormously. A 2003 review of epidemiological studies of kids found prevalence rates ranging from 0.03 to 4.84 per 1,000, with the ratio of autism to Aspergers ranging from 1.5:1 to 16:1; combining the average ratio of 5:1 with a conservative prevalence estimate for autism of 1.3 per 1,000 suggests indirectly that the prevalence of Aspergers might be around 0.26 per 1,000. Part of the variance in estimates arises from differences in diagnostic criteria. For example, a relatively small 2007 study of 5,484 eight-year-old kids in Finland found 2.9 kids per 1,000 met the ICD-10 criteria for an Aspergers diagnosis, 2.7 per 1,000 for Gillberg and Gillberg criteria, 2.5 for DSM-IV, 1.6 for Szatmari et al., and 4.3 per 1,000 for the union of the four criteria. Boys seem to be more likely to have Aspergers than girls; estimates of the sex ratio range from 1.6:1 to 4:1, using the Gillberg and Gillberg criteria.

Anxiety and depression are the most common other conditions seen at the same time; comorbidity of these in persons with Aspergers is estimated at 65%. Depression is common in adolescents and adults; kids are likely to present with ADHD. Reports have associated Aspergers with medical conditions such as aminoaciduria and ligamentous laxity, but these have been case reports or small studies and no factors have been associated with Aspergers across studies. One study of males with Aspergers found an increased rate of epilepsy and a high rate (51%) of nonverbal learning disorder. Aspergers is associated with tics, Tourette syndrome, and bipolar disorder, and the repetitive behaviors of Aspergers have many similarities with the symptoms of obsessive-compulsive disorder and obsessive-compulsive personality disorder. Although many of these studies are based on psychiatric clinic samples without using standardized measures, it seems reasonable to conclude that comorbid conditions are relatively common.

History—

Named after the Austrian pediatrician Hans Asperger (1906–80), Aspergers is a relatively new diagnosis in the field of autism. In 1944, Asperger described four kids in his practice who had difficulty in integrating themselves socially. The kids lacked nonverbal communication skills, failed to demonstrate empathy with their peers, and were physically clumsy. Asperger called the condition "autistic psychopathy" and described it as primarily marked by social isolation. Unlike today's Aspergers, autistic psychopathy could be found in people of all levels of intelligence, including those with mental retardation. He called his young clients "little professors", and believed some would be capable of exceptional achievement and original thought later in life. His paper was published during wartime and in German, so it was not widely read elsewhere.

Lorna Wing popularized the term Aspergers in the English-speaking medical community in her 1981 publication of a series of case studies of kids showing similar symptoms, and Uta Frith translated Asperger's paper to English in 1991. Sets of diagnostic criteria were outlined by Gillberg and Gillberg in 1989 and by Szatmari et al. in the same year. Aspergers became a standard diagnosis in 1992, when it was included in the tenth edition of the World Health Organization’s diagnostic manual, International Classification of Diseases (ICD-10); in 1994, it was added to the fourth edition of the American Psychiatric Association's diagnostic reference, Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

Hundreds of books, articles and websites now describe Aspergers, and prevalence estimates have increased dramatically for Autism Spectrum Disorder, with Aspergers recognized as an important subgroup. Whether it should be seen as distinct from high-functioning autism is a fundamental issue requiring further study. There is little consensus among clinical researchers about the use of the terms Asperger's syndrome or Asperger's disorder, and there are questions about the empirical validation of the DSM-IV and ICD-10 criteria.

Cultural Aspects—

People with Aspergers may refer to themselves in casual conversation as Aspies, coined by Liane Holliday Willey in 1999. The word neurotypical (abbreviated NT) describes a person whose neurological development and state are typical, and is often used to refer to non-autistic people. The Internet has allowed people with Aspergers to communicate and celebrate with each other in a way that was not previously possible due to their rarity and geographic dispersal. A subculture of Aspies has formed. Internet sites like Wrong Planet have made it easier for people to connect.

Autistic people have contributed to a shift in perception of Autism Spectrum Disorders as complex syndromes rather than diseases that must be cured. Proponents of this view reject the notion that there is an "ideal" brain configuration and that any deviation from the norm is pathological; they promote tolerance for what they call neurodiversity. These views are the basis for the autistic rights and autistic pride movements.

Simon Baron-Cohen has argued that Aspergers and high-functioning autism are different cognitive styles, not disabilities, and that a diagnosis of AS/HFA should not be received as a family tragedy, but as interesting information, such as learning that a youngster is left-handed. According to Baron-Cohen, "people with AS/HFA might not necessarily be disabled in an environment in which an exact mind, attracted to detecting small details, is an advantage." Tony Attwood argues, "The unusual profile of abilities that we define as Asperger's syndrome has probably been an important and valuable characteristic of our species throughout evolution."

The Aspergers Comprehensive Handbook

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually. Thus, the best treatment for Aspergers children and teens is, without a doubt, “social skills training.”

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How to Prevent Meltdowns in Aspergers Children

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's child is totally out-of-control. When it ends, both you and the Asperger’s child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

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Parenting Defiant Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

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Older Teens and Young Adult Children With Aspergers Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

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My Aspergers Child - Syndicated Content