April is National Autism Awareness Month

So let’s discuss some exciting research on autism spectrum disorders for families and practitioners.  Autism is currently the fastest-growing developmental disorder in the United States. What sort of disorders are we talking about? The Autism and Developmental Disorders Monitoring Network (ADDMN) describes them as follows:

Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by impairments in social interaction and communication and by restricted, repetitive, and stereotyped patterns of behavior.  Symptoms typically are apparent before age 3 years.

The Autism Society, a grassroots organization to support those affected by autism, lists:  

Some signs to look for in the children in your life: 

• Lack of or delay in spoken language
• Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
• Little or no eye contact
• Lack of interest in peer relationships
• Lack of spontaneous or make-believe play
• Persistent fixation on parts of objects

According to the most recent data from the Centers for Disease Control and Prevention, Autism Spectrum Disorders (ASDs) affected 1 in 88 children.  ASD reports are 5 times more common for boys (1 in 54) than girls (1 in 252) and all racial, ethnic and socioeconomic groups are affected.  Families with a child with an ASD have a 2%–18% chance of having another child who is affected.  A survey of health and education records by the ADDMN across 14 States found that the majority of 8-year-old children with ASDs (62%) do not have intellectual disabilities. Thus, although children with ASDs may be challenged in offering and responding to social cues and forming relationships with peers or parents, they are likely to have average or higher intelligence.  

Now for the Exciting News!  

Although parents may note a developmental problem before their children’s first birthday, such as vision and hearing problems, or social interaction and communication concerns, most children have not been diagnosed with an ASD until they were 4 years old.  However, researchers at the Marcus Autism Center and Emory School of Medicine in Atlanta have discovered that, by using eye-tracking technology, they can detect declining attention to the eyes of other people before infants are 6 months old in children later diagnosed with an ASD.  The results of the study were published in a November, 2013 issue of the journal, Nature. Co-investigator Ami Klin, Director of the Marcus Autism Center remarked,

We found a steady decline in attention to other people’s eyes, from 2 until 24 months, in infants later diagnosed with autism. . . . First, these results reveal that there are measurable and identifiable differences present already before 6 months. And second, we observed declining eye fixation over time, rather than an outright absence. Both these factors have the potential to dramatically shift the possibilities for future strategies of early intervention.

OK, let’s tone down the cheering for this breakthrough for a moment.  We must note that these differences in eye-tracking are so subtle that they are not noticeable to the human eye and must be measured with specialized equipment.  However, as the study concludes:

Although the results indicate that attention to others’ eyes is already declining by 2 to 6 months in infants later diagnosed with autism, attention to others’ eyes does not appear to be entirely absent. If infants were identified at this early age, interventions could more successfully build on the levels of eye contact that are present.  Eye contact plays a key role in social interaction and development. 

Hopefully, these study results will soon turn from research to practice to enable much earlier identification of ASDs and intervention to build upon early social and communication skills before later development is hindered. Earlier intervention could diminish the costs of caring for a child with autism which are astronomical, averaging $11,000 per year in medical costs and up to $60,000 per year in behavioral interventions.  While caring for a child with an ASD is taxing both emotionally and financially for most families, low-income status significantly adds to the burden for parents of children with autism.  It is imperative that both the children and their parents receive the resources they need to overcome these obstacles if positive child and parenting outcomes are to be achieved regardless of income status.

Autism Spectrum Disorders: A Heavy Burden for Families

For professionals involved in the child’s care, the focus tends to be on minimizing the child’s problem behaviors and teaching adaptive skills; and with good reason.  However, it is not unusual for parents’ interactions with their children with ASDs to reveal a disconnect between the parent and child.  For low-income parents, ASDs may weigh even more heavily due to family-work-life balance issues than for middle-income households, because other family obligations can hinder a parent’s ability to devote extra time and energy to understanding and adapting to the behavior of a child with autism.   

Low-income parents need, but do not always have, a support system which allows financial matters to take a back seat so that they can interact more effectively with their children.  Available resources, including health insurance and educational resources mandated by the Individuals with Disabilities Education Act (IDEA), vary by state.  These resources, however, are considered by most parents and many experts in the field to be inadequate to address all of an autistic child’s needs according to a study on the financial impacts of autism.  It is not unusual for middle-class families to go bankrupt in order to pay for Applied Behavior Analysis (ABA) and other costly interventions.  For most low-income families, the funds are not there to begin with.  Many low-income families have additional needs, in areas such as transportation and child care services for other children in the family, which are not met by insurance or public assistance.  

The Marcus Autism Center researchers’ observations offers insights into how infants who develop autism use their eyes differently than typically developing children, with important implications for intervention.  Similarly, an observational parenting assessment can provide insights into parents’ interactions with their children.  An observational parenting assessment, like the Keys to Interactive Parenting Scale (KIPS), can serve as a guide to improving parenting quality of all children, including those with special needs.  One of our success stories shares a case study of how KIPS helped the mom of a daughter with autism in parenting her daughter Sam.  With support of the Honeylands Specialist Child Development Centre’s services, Sam was able to enter a regular classroom in her local school.  Mom said of the parenting assessment experience, the most helpful activities of the intervention were “time to talk about her feelings, combined with the practical aspect of looking at how she interacted with Sam, together with opportunities to practice parenting differently . . . . talking alone would not have helped.”