Early Detection and Intervention
Why is early detection and treatment important? How can this be accomplished?
Answered by Angela Smith, MA, BCBA
Early detection of autism is essential in gaining access to treatment at the earliest point possible. With the rise in the incidence of autism, more and more families are faced with the challenge of accessing intervention programs for their toddlers with autism. As soon as a diagnosis is made, families should be provided with accurate, up-to-date information about science-based intervention options. In addition, parent training should be initiated at the point of diagnosis so parents can begin the process of facilitating skills for their child with autism.
Research indicates that the earlier the child gains access to quality behavioral treatment, the more likely they are to have a better long-term outcome. The National Research Council (2001) published recommendations for educating children with autism. They recommend that a child receive intensive behavioral intervention for a minimum of 25 hours per week in a low student-teacher ratio, focusing on a variety of functional skills as well as targeting decreasing challenging behaviors (although it is important to note that much of the published research involved more than 25 hours per week). The report also indicates that parents should be able to easily access and participate in the intervention. Unfortunately, research does not always dictate treatment. Often, once a diagnosis is obtained, precious months are wasted as families negotiate the maze of intervention alternatives. In addition, once families identify behavioral intervention as their treatment choice, they are often confronted with bureaucratic stumbling blocks to obtain funding and qualified service providers.
Assuming “early detection” means diagnosing an autism spectrum disorder before the age of three, then there are some options that are available for parents to access services for their newly diagnosed child. They can access early intervention services through the state, or they can go the alternative route and pay privately to have services started in the home. In addition to these two options, parents can go through parent training to learn to provide services themselves. Many families end up with a combination of all of these options. A privately funded intensive home program can range anywhere from $65,000 to $120,000 per year depending on how many hours are provided to the child. This enormous cost is not readily affordable for most families, so working with the state-directed early intervention system is usually the first step for families after diagnosis. Accessing early intervention can be challenging. An initial step to obtaining these services often involves an evaluation of the child by the early intervention team (which may include professionals such as an educator, social worker, speech therapist, etc.). Once this assessment process is completed, an Individualized Family Service Plan (IFSP) meeting is held in which recommendations for treatment are made. Families will very rarely get a recommendation for the 25 hours of behavioral intervention that the National Resource Council deems appropriate for educating children with autism. The team from Early Intervention will make the recommendation for number of hours and type of treatment. They may not even make a recommendation for behavioral intervention in the form of Applied Behavior Analysis (ABA). Once the Early Intervention team makes their treatment recommendations, the family either agrees or disagrees– and then the challenge of finding therapists to come to the home to provide the therapy indicated in the IFSP begins. In some instances, there is a time delay between the IFSP meeting and therapists beginning treatment with your child due to lack of therapist availability and scheduling conflicts. It is also important to note that an Early Intervention provider may be prohibited from working with any outside independent consultants, so combining private services with Early Intervention services is typically very difficult (but not impossible).
Accessing and assembling a privately funded program can be challenging as well, in that there are limited agencies and private consultants providing the services– not to mention the cost. However, once started, the families can provide as intensive of a program as they can afford with the treatment methodology of their choice. A 25+ hour per week ABA program with a qualified consultant or case manager directing the program (minimally coming to the home 2 to 4 times per month to provide supervision) is more likely to render quicker positive results than a program that consists of less than 25 hours a week with lesser qualified supervision and therapists. Supervision (often in the form of “clinics” i.e. team meetings) should focus on working with the child and providing ongoing training for therapists and family. To obtain a private program as described, you can contact one of several agencies that provide outreach services, or a private individual who provides consulting services. Finding these service providers often occurs through the grapevine—although some local advocacy organizations may provide lists of providing agencies. The Behavior Analyst Certification Board (www.bacb.com) also has a certificant registry which may provide a good starting point.
Finally and less utilized, parents can go through parent training to become teachers themselves. Parent training has long been established as a key element to effective behavioral interventions for children with autism, but unfortunately, this option is not always suggested by those who diagnose children with autism. Further, there are limited training opportunities available for parents other than the standard training offered by Early Intervention. Training opportunities will vary depending on where you live. For example, there has been a recent increased emphasis on training in the New Jersey area. The Institute for Child Development through Hackensack University Medical Center has paired up with the Alpine Learning Group to provide short-term intensive parent training to families of newly diagnosed children. This training is dedicated to teaching parents to recognize learning opportunities in their everyday environment, which maximizes their child‘s learning. In addition to teaching parents how to be good teachers, the training also helps educate parents on how to gain access to the services that their child would benefit from (e.g., Early Intervention, contacting school district, etc).
Overall, 25+ hours a week of ABA therapy, with a qualified team leader/consultant and therapists that begins as close to the point of diagnosis as possible, along with parent training, is the ideal treatment package for a newly diagnosed child with autism. Parents with children with autism continue to impress me each day with their level of dedication, so it‘s not surprising that with the economic strains and treatment accessibility issues, many still become the best teachers and advocates for their children.