Time can be the enemy for families waiting for a diagnosis for children they suspect may be on the autism spectrum. And after a child is diagnosed, the ability to pay for and access necessary therapies is sometimes an impossible roadblock.
Researchers from the Centers for Disease Control and Prevention (CDC) recently announced that an estimated 2.24 percent of children in the United States may have autism. This is a nearly 80 percent increase from 2011 to 2013, when it was estimated that 1.25 percent of children in the U.S. were diagnosed with autism.
Before diagnosis, families can experience waitlists as long as 12 months. After diagnosis, families often wait a few months to more than a year before starting treatment — that is, if they can afford treatment at all.
A growing disparity exists between families that are able to access and pay for services for their children with autism and those that cannot. Advocacy for early identification and intervention matters, but not all families can afford to follow through on what is recommended or do so quickly. This places a greater burden on families, hospitals, school systems and communities.
In a new study in Autism, researchers from the CDC and other organizations found that 13 percent of children previously diagnosed with autism lost the diagnosis because of incorrect diagnoses, developmental maturation and treatment.
These results are not surprising, and they reflect what I see in clinics in the Chicago area. On a typical day, I may see one family able to access up to 30 hours of direct services for their child with autism through private insurance or out-of-pocket expense, while another family cannot access private therapy because their insurance is not accepted and the out-of-pocket expense is too great. The out-of-pocket cost for one of hour of therapy for a child with autism can range from $100 per session to over $150, which can add up quickly.
The Affordable Care Act expanded coverage for autism, providing an important option for families to purchase plans in the marketplace. Unfortunately, not all families are able to afford the plans that cover more extensive therapies. The plans they are able to afford may not cover their preferred providers. To take away this option would be even more devastating for children and families and possibly leave them without any therapy for their child.
Compared with other children with special health care needs, children with autism face more serious gaps in insurance coverage, and many families report that coverage is inadequate. In Illinois, public insurance does not cover applied behavior analysis therapy, which can be very beneficial for children with autism.
Autism affects how a child communicates and interacts with others. It can result in a narrow range of interests and repetitive behaviors, such as repeating scripts from television shows or performing motor behaviors such as spinning and hand mannerisms. The specific challenges in terms of communication, social skills, interests and behaviors vary from child to child. It is a learning style that changes over time and requires follow-up by a team of specialists.
Intervention for children with autism is expensive. For a child under 5 years old with autism and an intellectual disability, the estimated annual cost for a family is $107,863, including special education, early intervention and family income loss. Some estimates show that parents of children with autism are able to work seven fewer hours per week than parents of children without autism. This translates to an average productivity loss of $18,720 per year per family. Annual costs were even greater for younger children as well as for children with autism and intellectual disabilities.
One way to make autism treatment more sustainable is to consistently involve families in therapies and to use methods that are supported by research. Another is to invest in early intervention for all children. Most of all, the time spent in therapy needs to be made more effective. This will require increasing funding for autism research.
In 2015, Congress approved a budget increase to $32 billion for the National Institutes of Health. Autism research accounts for an estimated $193 million for 2016. While autism is the fastest-growing developmental disorder, it receives a relatively small amount of funding.
Another solution involves rethinking how we teach and support children and families affected by autism. For example, families need to be involved in learning and implementing social communication and behavioral strategies with the guidance of a therapist experienced in autism in a more intensive and ongoing way — particularly at an early age.
Children with autism benefit from explicit instruction on communication and social skills. It is easier to do this early, even before the age of 2, preferably as soon as families are concerned.
With early detection and intervention, I have seen many children’s communication, learning, social skills and behavior improve to the point that they can function well in a general education classroom. But the older children get, the harder these skills are to teach. Maladaptive behaviors can develop. The lack of early intervention can result in increasing communication problems, behavior problems and family stress, and older children cannot typically be as easily redirected and physically removed from volatile situations as young children.
In addition, we need to encourage and incentivize individuals to pursue vocations that support the millions of individuals with autism and their families. It is important to remember that individuals with autism benefit from services throughout their lives, not just when they are young. They rely on developmental pediatricians, child psychiatrists, psychologists, social workers, special education teachers, speech and language therapists, occupational therapists, community partners and behavior therapists, among others.
We know that early intervention can change the developmental trajectories for many children with autism. Now we need to be able to provide it to everyone who needs it.