What is Autism?

Autism is a developmental brain disorder which causes impairments in a person's ability to communicate, socially interact, and results in repetitive and unusual behaviors.

"Always Presume Intellect"

Taken with permission from Autism and the God Connection, a book by William Stillman, Sourcebooks, Inc. 2006

To those unfamiliar with autism, it is, from a clinical perspective, a neurological difference in how the brain is "wired". There is no single known cause, though theories abound and current research is focused upon genetic and environmental factors. (As recently as 1997, a nursing textbook was proffering the ancient stereotype that indifferent, "refrigerator" mothers were accountable for their children's autistic disassociation!) Autism primarily affects one's ability to communicate in ways that are effective, reliable, and universally understandable. This means many folks do not speak, or they have limited vocal ability. These obstacles impede one's expressions of wants, needs, thoughts and desires. This cannot help but impact the quality of one's social interactions. The challenge to sustain social relationships is another hallmark of autistic diagnosis.

Autism is also diagnosed by marked differences in fine and gross motor skills. These may include repetitive activities such as physically rocking back and forth, twirling a piece of string, flicking a light switch on and off repeatedly, or simply lacking in grace and agility of movement. (Some with autism have complained that certain physical traits are not of their volition, akin to a prolonged, involuntary shiver, sneeze, or twitch.)

Autism is a lifelong experience, and is neither contagious nor curable. It is, quite simply, a natural part of someone's being, every bit as much as eye or hair color, flesh pigmentation, and ancestral heritage-as unique and individual as each individual is unique. It manifests itself on a broad, multicolored spectrum that stretches from those who "appear" to be significantly challenged to those with very mild experiences...

The clinical definition of autism is not family-or individual- friendly. It is, unfortunately, oftentimes an indicator of one's perceived deficits rather than one's strengths, gifts, and abilities. Many parents tell me their child's diagnosis is a "death sentence". Some are deeply embittered or resentful of their child's autism and the confusing, sometimes violent behaviors that may ensue...The focus so frequently becomes how to best manage and control those with autism for the sake of conformity and "normalcy" that we become oblivious to the obvious. And the obvious is the extraordinary and monumental offerings provided by those who are inherently gentle and exquisitely sensitive. Above all, we must shatter the stereotype that those with autism necessarily experience intellectual impairment (i.e., mental retardation) as a result of the autism. I will respectfully request that you suspend your disbelief because my mantra is "always presume intellect."

Stillman is an author and columnist for the Autism Perspective magazine and author of special needs parenting books. A writer with Asperger's Syndrome and a noted speaker, he is the founder of the Pennsylvania Autism Self-Advocacy Coalition and is on boards of several autism organizations. Stillman was also the keynote speaker for the 2007 FACES/TASH Possibilities Conference. Visit www.williamstillman.com for more information.

Prevalence

About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network.
ASD is reported to occur in all racial, ethnic, and socioeconomic groups.

ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189).
Studies in Asia, Europe, and North America have identified individuals with ASD with an average prevalence of about 1%. A study in South Korea reported a prevalence of 2.6%.

About 1 in 6 children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.


Risk Factors and Characteristics

Studies have shown that among identical twins, if one child has ASD, then the other will be affected about 36-95% of the time. In non-identical twins, if one child has ASD, then the other is affected about 0-31% of the time. [1-4]

Parents who have a child with ASD have a 2%-18% chance of having a second child who is also affected.[5,6]

ASD tends to occur more often in people who have certain genetic or chromosomal conditions. About 10% of children with autism are also identified as having Down syndrome, fragile X syndrome, tuberous sclerosis, or other genetic and chromosomal disorders.[7-10]
Almost half (46%) of children identified with ASD has average to above average intellectual ability.
Most recent intelligence quotient (IQ) as of age 8 years among children identified with autism spectrum disorder (ASD) for whom test data were available,* by site and sex- Autism and Developmental Disabilities Monitoring Network, seven sites†, United States, 2010

Children born to older parents are at a higher risk for having ASD.
A small percentage of children who are born prematurely or with low birth weight are at greater risk for having ASD.

ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%. [Read summary]
Diagnosis

Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable.

On average, children identified with ASD were not diagnosed until after age 4, even though children can be diagnosed as early as age 2. When looking at age of first diagnosis by subtype, on average, those children were diagnosed with Autistic Disorder at age 4, Pervasive Developmental Disorder-Not Otherwise Specified at age 4 years and 2 months, and Asperger Disorder at age 6 years and 2 months.

Studies have shown that parents of children with ASD notice a developmental problem before their child's first birthday. Concerns about vision and hearing were more often reported in the first year, and differences in social, communication, and fine motor skills were evident from 6 months of age.

Economic Costs

It is estimated to cost at least $17,000 more per year to care for a child with ASD compared to a child without ASD. Costs include health care, education, ASD-related therapy, family-coordinated services, and caregiver time. For a child with more severe ASD, costs per year increase to over $21,000. Taken together, it is estimated that total societal costs of caring for children with ASD were over $9 billion in 2011.

Children and adolescents with ASD had average medical expenditures that exceeded those without ASD by $4,110-$6,200 per year. On average, medical expenditures for children and adolescents with ASD were 4.1-6.2 times greater than for those without ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4-9.5 times greater.

In 2005, the average annual medical costs for Medicaid-enrolled children with ASD were $10,709 per child, which was about six times higher than costs for children without ASD ($1,812).

In addition to medical costs, intensive behavioral interventions for children with ASD cost $40,000 to $60,000 per child per year.

The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institute of Health, defines Asperger Syndrome as:

A developmental disorder that is characterized by:

• repetitive routines or rituals,
• peculiarities in speech and language, such as speaking in an overly formal manner or in a monotone, or taking figures of speech literally,
• socially and emotionally inappropriate behavior and the inability to interact successfully with peers,
• problems with non-verbal communication, including the restricted use of gestures, limited or inappropriate facial expressions or a peculiar, stiff gaze,
• clumsiness and uncoordinated motor movements.