Autism Spectrum Disorders (ASDs) Statistics

The latest statistics concerning the prevalence of autism spectrum disorders (ASDs) in the United States has just been published on March 30, 2012. It covers the period of 2008 and children aged 8 years were studied. The diagnosis of an ASD was made by studying information obtained from children’s evaluation records anytime from birth until age when the child turns 8 years. A child was included in the statistics as having an ASD if they displayed behaviors consistent with the DSM-IV-TR criteria for the following conditions: Autistic Disorder; Pervasive Developmental Disorder-Not Otherwise Specified (PDD(NOS)); or Asperger Disorder.

Before discussing the ASD statistics it is important to review just how common developmental disabilities are for children. The simple fact is developmental disabilities in children are very common.

The journal Pediatrics in 2011 published data on the prevalence of developmental disabilities for children living in the United States for the years 1997 to 2008. Overall, 1 in 6 children had a developmental disability. Children aged 3 to 17 years were included and the information was based on parent reports of diagnosis including attention deficit hyperactivity disorder; intellectual disability; cerebral palsy; autism; seizures; stuttering or stammering; moderate to profound hearing loss; blindness; learning disorder; and/or other developmental delays. Boys had a higher prevalence overall then girls. Children from low income households and those with public health insurance also had a higher prevalence of disabilities. The overall prevalence for boys and girls increased from 12.8% to 15% over the 12 years.

ASD Statistics:

  • 1 in 88 children are identified as having an autism spectrum disorder (ASD) and ASDs occur in all racial, ethnic and socioeconomic groups. The previous Center for Disease Control (CDC) estimate was 1 in 110 children.
  • 1 in 75 children in Pennsylvania have an ASD. In Utah 1 in 47 and in Alabama 1 in 210. The diagnosis of ASD is more likely when educational records are available and the
  • ASDs are 5 times more common in boys (1 in 54) than girls (1 in 252) and are present throughout the world with an average prevalence of 1 in 100 (1%). There have been reports from South Korea of  an average prevalence of 1 in 38 (2.6%).
  • ASD prevalence is highest among non-Hispanic white children compared with other racial/ethnic groups.
  • For identical twins if one child has an ASD there is a 36-95% chance of the other child having an ASD. For a fraternal twin the risk is 0-31%.
  • Parents who have a child with an ASD have a 2-18% chance of having another child who is also effected.
  • The majority of children identified as having an ASD do not have an intellectual disability.
  • Children born to older parents are at higher risk for ASDs.
  • A small percentage of children born prematurely or with low birth weight are at greater risk for having an ASD.
  • 83% of all children with an ASD have an associated developmental, psychiatric, neurologic, chromosomal or genetic diagnosis.
  • The diagnosis of ASDs under the age of 2 years is reliable.
  • 18% of all children diagnosed as having an ASD are diagnosed by the age of 3 years.
  • Most children are not diagnosed as having an ASD until after age 4 years.
  • Parents of children who are diagnosed as having an ASD notice a developmental problem before the age of 1 year.
  • Medical expenses for a child with autism are 4-6 times greater than those without an ASD.
  • Children with an ASD have medical expenditures $4,000 to $6,000 per year greater than for children without an ASD.
  • Intensive behavioral interventions cost $40,000 to $60,000 per year for a child with an ASD.
  • The medicaid cost for a child with an ASD was six times higher per year than for a child without an ASD (Average cost $10,709).

ASD Trajectories

Recent statistics have confirmed more children are being diagnosed as having an
autism spectrum disorder (ASD). The most recent prevalence estimates for children is 1 per 110 children aged 8 years. This has raised the visibility of ASDs for parents and the public in general. Due to this increased awareness many new questions are being asked. The biggest question concerns outcome. Parents and the general public want to know what are the developmental expectations for a child diagnosed with an ASD. This is a difficult question to answer due to the almost certain multiple causes of autism and the variability of presentation. In addition, the roles of genetic predisposition and environmental factors support the complexity of causation and presentation. Although information concerning developmental trajectory and prognostic forecasting is limited, there are certain patterns parents should be aware of.

A child’s development over time can be analyzed in terms of a series of time related skills. Following the patterns of skill acquisition allows a learning trajectory to be determined. When this is done for children with ASDs there is no single expected learning trajectory.  A range of trajectories has recently been reported for the major
symptom issues of communication, social skills and repetitive behaviors (Pediatrics, April 2,2012).

The patterns fell into various categories. The categories ranged from low to high functioning (HF). In general from birth through age 14 years patterns of functioning improved most for children who were high functioning and less for those who were low functioning. Children with high functioning scores tend to improve most over time.  Repetitive behaviors remained flat for all the ranges except for a small set of children (7%) who showed a decrease in functioning and another small set (8%) who showed improvement. There was a subset of children, however, called “bloomers.” Bloomers initially resemble low functioning children with ASD but over time they change and resemble high functioning children with ASD. The percentage of children in the sample staudied ranged from 7.5-10.7%.

This information is important for parents. Although studies spanning extended life periods are limited many clinicians have recognized a small percentage of children who initially begin in the low functioning range do, in fact, substatially improve and perform in the high functioning range by mid adolesence. Children who do bloom are those without intellectual disablity and those with more educated, non-minority mothers. The factors that relate to this are unknown. Possible causes include positive environmental diversity and the quality and quantity of interventions.

As a parent what can you learn from this? Although these findings need to be confirmed by future data reviews and modeling the information does support the diversity of ASD
presentation; the general improvement in communication and social skills over
time; the relative lack of change in repetitive behaviors  over time with the
exception of one group that improved and 1 group that worsened;  and the
presence of a group of children (“bloomers”0 diagnosed as having an ASD who
initially are in the low functioning category and dramatically improved to the high functioning level as they aged to age 14 years.

This study provides helpful prognostic advice to set and understand expectations for a child with an ASD.

Costs Associated with ASDs

A recent report in the journal Pediatrics published in April 2012
documents the significant economic burden families of children with autism
spectrum disorders (ASDs) face. The statistics do have some limitations but the
findings support what parents and professionals have been saying for a long
time. The care of children with ASDs is not only demanding but also expensive.
Time, money and resources are spent on medical and educational therapies. The
cost of these services is demanding both for the community and the family. The
recent rise in the prevalence statistics to 1 in 110 children in the United
States have and ASD has increased the awareness of this disorder and the overall
cost of caring for a child with an ASD. The need for parents of a child with an
ASD to wear many hats in terms of caregiving is a compounding issue. Parents
must be a caregiver, case manager,  therapist, behavior specialist, advocate,
transporter and an educator. These jobs never end.

In the past health care costs were the focus for children with an ASD. The focus today is now shifting to the overall costs to the community and to the family. Specifically,
the burden to the family in terms of economic costs is now being identified.
Children with an ASD require intensive specialized services. These services may
not be covered by traditional insurance and must be obtained at certain times
and in certain locations. These requirements often hinder a parent’s ability to
maintain paid or full time employment. This has direct family effects and
secondary workforce participation effects. Parents of children with an ASD are
less likely to be employed or work full time due to their care taking obligations and the scarcity of appropriate community based resources to help them deal with the emotional and behavioral issues that children with an ASD frequently have. Balancing of work with their child’s needs is difficult and often impossible.  The result is a reduction in work hours or unemployment. This cost is in additional to the direct service costs.

The mother is generally the the primary caregiver for a child with an ASD and consequently her labor market impact is the greatest. Mothers are less likely to work, work fewer hours per week, and earn substantially less than mothers of children with no
health limitations. Mothers of children with no health problems work an average
of 7 hours more per week than mothers of children with an ASD. There was no
significant difference for fathers. On average families of children with no health limitation work an average of 5 hours more per week. Mothers of children with ASDs earned almost $6,000 less per year  than mothers of children with no health limitation and families with no health limitation earned over $17,000 per year more than families with a child with an ASD.

In summary mothers of children with an ASD earned 56% less than mothers of a child with no health limitation. They are 6% less likely to be employed and  work an average of 7 hours less per week than mothers of children with no health limitation. Children
with ASDs are 9% less likely to have both parents working and family earnings are 28% less then those of children with no health limitation.

8 Item Classifier

The diagnosis of a child with an autism spectrum disorder (ASD) is time and
labor intensive and it’s availability is geographically limited. Extensive
parent reports, diagnostic interviews and professional observations are most
commonly used for diagnostic decision making. The Autism Diagnostic Observation
Schedule (ADOS) is a commonly used tool. It is an extensive evaluation and
measures social interaction, communication, play and the imaginative use of
materials. This is done through a variety of structured activities. There are
four modules and each module is directed towards a specific group of individuals
based on their language and developmental level. The first module is directed
to younger children with little or no language. The evaluation is highly
structured, time consuming, labor intensive and must be performed by a
professional trained in the administration of the instrument. Due to these
issues the test is limited to clinical and developmental centers and there are
frequent extended waiting lists for the testing to be performed.

A recent study published online April 10 in the Journal Translational Psychiatry has
abbreviated the assessment to include only 8 of the 29 items from module 1.
Using these 8 items the accuracy of diagnosis was >99% accurate (99.7%
sensitivity and 94% specificity). The advantage to such an approach is to allow
a more rapid accurate diagnosis of the young child with an ASD. The benefits of
more rapid and more easily available early screening would be earlier initiation
of intervention for the child and the family. A facebook page has been launched
by the writers of  this article to allow the survey information to be available
to more parents.

The activities used in the observation of a child include the following:

Free Play:  A child is allowed to explore a room and toys. The way the child interacts with or plays with the toys is noted as is the way the child interacts with the parent and the examiner.

Bubble Play: The child’s affect, social initiations, shared enjoyment, requesting
behaviors and motor behaviors and mannerisms are observed while the examiner
blows bubbles.

Anticipation of a Routine With Objects: The child’s affect, initiation of joint attention, shared enjoyment, requesting and motor behavior are observed during a structured routine blowing up a balloon and releasing it.

Responsive Social Smile: The child’s smile is observed for quality and consistency in response to the examiner smiling, the parent smiling, the parent smiling and making a familiar noise or calling in a way that implies physical contact and in being touched.

Anticipation of a Social Routine: The child’s affect and attempts to initiate the repetition of a routine during a peek-a-boo or tickling game are observed in terms of the quality of the child’s behaviors and the child’s ability to integrate gaze, facial expression,
vocalization and gesture as directed to the parent and examiner.

Functional and Symbolic Play: The child’s use of miniature or
representative objects in imitation of familiar actions is performed and the
child’s social awareness and shared enjoyment are recorded.

Birthday Party: The child’s interest and ability to join in a doll’s birthday party is
observed including whether the doll is treated as a a representation of a real
being, whether the child spontaneously participates and contributes to the party
and if involvement is limited, whether the child will imitate the examiner’s
actions or participate when asked or directed to do so.

Snack: A snack activity is used determine if and how the child requests or indicates a
preference for food. The child is observed for gaze, use of gesture, reaching,
facial expression and vocalization to communicate a request to the examiner.

Redefining Autism

There has been a great deal of talk recently in the media and between parents
and professionals about possible upcoming changes in the way autism spectrum
disorders (ASDs) are classified. the fear expressed by parents concerns whether
their child will no longer meet criteria for the diagnosis and consequently be
unable to receive necessary services. Much of this talk has arisen over the
public comments concerning the fifth edition of the Diagnostic and Statistical
Manual of Mental Disorders (DSM-5) that is due out by summer 2013.

The upcoming changes are based on new knowledge and understanding  about ASDs. As all parents of a child with an ASD know there have been major advances in areas
of brain research, genetics and the general understanding of child development
and child behavior. The aim is to use this information to make the field of ASD more understandable and to make the core concepts that identify a child as having an ASD clearer.

Numerous clinicians, professionals and advocates have been involved in this process and at the present time field studies are being conducted to test the proposed new diagnostic criteria. The concern is being raised that a more stringent diagnostic set of standards could alter the composition of children diagnosed with an autism spectrum. The aim is to have a set of criteria that does not exclude a child who has an ASD but does not include children who do not have an ASD.

The greatest fear of any parent is that their child will not meet service eligibility criteria and necessary and successful services will stop. An additional concern about the financial cost of care and services presently covered by medical assistance through the medical loophole program due the diagnosis of autism accentuates this fear and concern.

Although there have been some reports of children with high functioning autism spectrums who would be excluded from the “new diagnosis” information is still limited. Most of the children who failed to meet the proposed criteria failed because they did not meet the social communication criterion or the restricted or repetitive behavior criterion. Children in the previous categories of Asperger’s disorder and PDD (NOS) were at greatest risk for not meeting the proposed DSM-5 criteria. An extensive review is now underway to determine the statistical and real life service eligibility implications of
the proposed criteria changes.

As a parent you must not rush to judgement. The existing criteria are behind the times. They are inexact and lack a dimensional understanding of the autism spectrum diagnosis. Change is needed. The new criteria must not, however, exclude high functioning children and adults who do not have the behaviors that are typically seen in those children with ASDs who have a low IQ. These behaviors include: stereotyped or repetitive speech, motor movements or repetitive use of objects (sterotypies); excessive
adherence to routines, ritualized patterns of verbal or non-verbal behavior or excessive resistance to change; highly restricted, fixated interests; and increased or decreased reactivity to sensory input or unusual interest in sensory aspects of  the environment.

Those writing the new criteria understand the importance of autistic type social-communication impairments. It is these impairments that lead to the greatest social, emotional and educational problems encountered by individuals with ASDs as they age. The effects of these deficits on relationship building and the ability to find successful satisfying long term employment cannot be overstated. Due to the importance of these core deficits parents should be encouraged that their child who has deficits in these
areas and not other associated areas would still be able to maintain the diagnosis of ASD.

As with all matters, patience is the key. Those working on this endeavor are committed to  providing your child the best care possible. The public outcry has been heard. The criteria have not been finalized. New studies and reports will be presented as they become available. Please stay tuned.