A good early intervention program can be provided in different ways:
If your child is under age 3, you will work with the early intervention provider to develop an individualized family service plan (IFSP). This is a document that you and others will write together. It will describe your child’s specific intervention needs and goals, and the types of services your child and family will receive to reach those goals.
If your child is 3 years old or older, he will receive an evaluation, and you and the preschool services agency staff members will develop an individualized education program (IEP) for your child, usually under the direction of your local school district. Your child’s intervention will move from “early intervention” to “preschool” services at age 3, even if you started out with an IFSP.
Choosing a Birth-to-3 Program or Preschool Program
Because the needs of each child with ASD are unique, there are many ways to construct an early intervention program that can help your child, and many types of intervention models to draw from. Some children receive all of their services at a specialized clinic- or school-based program, whereas others receive most of their interventions from people who work with the children at home. It is common for young children with autism to receive their intervention from a combination of school-, clinic-, and/or home-based intervention programs. In some places, services are delivered by people working for the public agency. In other places, the public agency contracts with private groups to serve children.
As we have said above, high-quality programs use EBPs. Most EBPs have come from the field of applied behavior analysis (ABA). What is ABA? ABA is the use of teaching practices that come from the scientific study of learning to teach or change behavior. The principles of ABA can be used to teach new skills, shape existing behaviors into new ones, and reduce the frequency of problem behaviors. Later in this book (Chapter 9), we describe the principles of ABA in more detail. For now, the important thing is to look for early intervention programs that use EBPs in their approach. As noted earlier, you can ask any early intervention provider directly whether the program uses EBPs in its teaching approach. If the answer is no, look for additional options.
Providers of early intervention programs and services may include early educators, speech–language therapists, behavior analysts, occupational therapists, or other professionals, along with educational or therapy assistants. Although the amount of intervention for preschoolers recommended by the National Research Council (see the checklist on page 13) is 25 hours per week, we don’t know what the best number of hours is for children under 3, and public services in many places may provide only a few hours per week of intervention. You can use the intervention strategies described later in this book, and those you learn from your intervention team, at home to increase the number of hours of high-quality learning experiences your child receives. This will also help your child learn to bring (generalize) the skills learned in other settings into daily life at home and in your family activities.
If you have a choice of intervention programs, try to visit and observe different programs in action, meet with the director and teachers, and talk with other parents of children participating in the program. As you observe the program and talk with the teachers and parents, imagine your child in this program. Is the intervention approach based on EBPs? Does it seem right for your child? Is this the kind of approach you think will work best for your child? Programs differ in their degree of structure and routine, how they work with parents, how they teach language, how quiet or noisy they are, whether they are delivered at home or in a group, and so on. How do these qualities match your child’s individual personality, learning style, and abilities? How do they match your preferences, values, and expectations for how others should interact with your child? The National Research Council recommendations mentioned earlier can be broken down into more specific criteria that you can use to evaluate an early intervention program.4 You may not be able to determine whether all of the criteria in the checklists in the box on pages 18–19 are being met without delving into a lot of detail with the providers, but you can get a fairly good idea of whether many of them are being met by observing the program closely and asking questions as they arise.
Use of Additional Therapists
Public agency intervention programs will have speech–language therapists, occupational therapists, psychologists, and physical therapists on staff. If you go through your public agency for services, your child is likely to receive an evaluation by a speech–language therapist, and perhaps an occupational therapist as well. Their information is typically used to build the goals and service plans that appear on your child’s IFSP or IEP. Sometimes these therapists work directly with children separately from other children; sometimes they work with a small group of children, or children and parents; and sometimes they consult with those who are providing the ongoing intervention, rather than working directly with children. Some families also use these types of therapists privately, using their children’s medical insurance to cover the costs, if possible. If your child is not making enough progress in developing spoken language, discuss this with your team members and ask them whether additional therapy from a speech–language therapist might be helpful. You can ask them for referral sources, and your child’s physician should also be able to refer you to a speech–language pathologist whose services are covered by your child’s health care insurance. Their treatment may focus on general communication, including use of gesture and developing word use, articulation and speech development, and even social interaction and play.
If your child’s motor coordination or responses to sensory stimuli are very concerning to you, you can follow the same process just described to find an occupational therapist. Discuss this with your team and your child’s physician; ask whether additional occupational therapy or physical therapy may be helpful to your child; ask for a referral to a professional whose services are covered by your child’s health care insurance; and seek additional treatment. A list of therapists who have experience working with young children with autism in your area is also provided in the “Resource Guide” section of the Autism Speaks website.
Therapists in the Home Setting
When an intervention is delivered at home, typically a professional person acts as a program manager or supervisor of the program. The program manager has expertise in early intervention and supervises a team of therapists, who may be paraprofessionals who should receive training and ongoing close supervision by the program manager. These paraprofessionals (sometimes also referred to as tutors, aides, interventionists, or home therapists) come to the home regularly to work with the child. In some areas, these services are paid for by the public early intervention service agency. In other areas, health insurance will pay for these early intervention services. Sometimes parents pay out of pocket. Reforming insurance coverage practices to cover such services is an important goal for advocacy organizations. If you have home-based therapy, it is important to ensure that the program manager is professionally trained and credentialed, will see your child frequently, will observe and supervise the others working with your child frequently, and is using EBPs. Use the checklist in the box on page 21 to determine whether a home-delivered intervention you are considering will be effective for your child.
The Role of Your Child’s Physician in Early Intervention
Only recently has the impact of your child’s medical health on her ability to learn and benefit from early intervention been fully recognized. We have learned that ASD not only affects the brain and behavior, but can also affect the whole body. Thus your child’s physician will play an ongoing role in your child’s treatment. Common medical issues that children with ASD may experience include sleep disturbances, such as difficulty falling asleep and frequent awakening; eating difficulties, such as finicky eating and food aversions; gastrointestinal problems, such as constipation and diarrhea; and seizures. Less common medical problems include rare inborn problems wi
th metabolism. A physician should screen for these metabolic conditions as part of the diagnostic workup.
Not all physicians are familiar with how to assess and treat the medical issues that your child may be facing. If your child is uncomfortable, tired, or in pain because of a medical issue, your child may start to become aggressive, have a tantrum, or become lethargic. These “problem behaviors” may be viewed by the physician as “just part of the autism.” If you suspect that your child has an underlying medical condition, work closely with your child’s physician to find the answers. Your child’s doctor may need to refer your child to a physician who specializes in autism for appropriate medical assessment and treatment. Such specialty physicians are typically available at university medical centers and children’s hospitals, which often have entire autism clinics. Ask your child’s doctor if this type of referral is needed for your child. You can also look for a physician in your area by visiting the “Family Services” section of the Autism Speaks website.
Sleep Difficulties
Sleep problems are extremely common among children with ASD. In fact, it is estimated that over half of children have at least one frequent sleep problem. This means that over half of parents of children with ASD have sleep disruption, since parents’ sleep is inevitably disrupted when their child has a sleep difficulty! Among the sleep problems that parents report are delayed sleep onset, night waking, early awakening, obstructive sleep apnea (difficulty breathing when asleep), and reduced need for sleep. Research suggests that ASD may be associated with differences in genes that regulate the sleep cycle and the production of melatonin. Melatonin is a chemical secreted by the pineal gland in the brain that helps regulate the circadian (daily) rhythms, including the sleep cycle. Occasionally, sleep problems are caused by seizure activity that is occurring during the night.
If your child is struggling with a sleep problem, he will not be able to take full advantage of early intervention. Studies have shown that sleep disruption in children, including children with ASD, is associated with poor attention, memory difficulties, and behavior problems, such as tantrums and aggression. The most common sleep problem parents of children with ASD report is insomnia. Often insomnia in a child with ASD can be helped substantially by establishing a more consistent bedtime routine (this is often referred to as good sleep hygiene). In an article on sleep hygiene for children with developmental disabilities published by the American Academy of Pediatrics, the following recommendations5 were offered for helping children with developmental disabilities sleep better:
1. Provide a sleep environment that is comfortable for the child, in terms of temperature, lighting, mattress, textures of blankets, and so on.
2. Provide a relatively dark sleep environment, because even low levels of light inhibit melatonin production (a night light is okay if necessary).
3. Establish a regular sleep–wake schedule, including regular times for naps, going to sleep, and awakening. In general, there should not be more than an hour’s difference in bedtimes and wake-up times during the week and weekends.
4. Plan bedtime activities carefully to help calm your child before sleep, because children with ASD can easily be overstimulated. Avoid new and unexpected activities, excessive noise, vigorous play, and large meals close to bedtime. Bathing, lullabies, presence of a familiar toy or blanket, and looking at books together are usually calming. Other calming activities include light massage, brushing hair, and soft music.
5. Do not have a TV in your child’s room. Do not play movies or TV as a way to help your child fall asleep.
If your child has a sleep problem, the first person to consult is the psychologist on your child’s early intervention team. There are excellent behavioral methods for parents to use that can improve children’s sleep enormously. V. Mark Durand has written two excellent books to help parents improve their child’s sleep based on good science: One is called Sleep Better (1998), and the other is When Children Don’t Sleep Well: Interventions for Pediatric Sleep Disorders: Parent Workbook (2008). Full details on both are listed in the Resources section at the back of this book. If these techniques are not effective, check with your pediatrician, who can provide more information about help for sleep. Melatonin is sometimes given orally to assist in establishing a regular sleep–wake cycle, but this should be done under the supervision of your family pediatrician.
Gastrointestinal and Feeding Problems
Another common medical problem experienced by many children with ASD is gastrointestinal (GI) distress. Parents frequently report that their child with ASD has abdominal pain, diarrhea, gas, and constipation. The most common problems reported by parents are diarrhea and constipation, which can alternate in the same child. Although these problems are fairly common in all children, there is some evidence that they occur more frequently in children with ASD. Such GI problems cause pain and discomfort and, like sleep problems, can result in problem behaviors and difficulty paying attention. These problems in turn can result in failure to benefit fully from the intervention program.
Because children with ASD have difficulty communicating, it may be challenging to know whether or not your child is experiencing abdominal or other types of pain. Be observant of abrupt changes in your child’s behavior, excessive crying or whining, self-injurious behavior, holding her stomach, and other nonverbal indicators of pain. If you are suspicious, take your child to the pediatrician to have her evaluated. GI problems are treatable. Depending on the type and severity of the GI problem, treatments can include dietary interventions, nutritional supplements, and medications. There currently is no scientific evidence that special diets, including elimination of casein and gluten, improve the behavior of children with ASD; however, some parents have anecdotally reported significant benefit from such diets, including improved attention and fewer behavior problems.
Eating problems are also common among children with ASD. A recent study published by the American Academy of Pediatrics6 found that children with ASD often start to have feeding difficulties as infants. They are more likely than typical infants to start eating solid food at a later date, for example. By 1 year of age, children with ASD are more likely to be described as “difficult to feed” and “very choosy.” As toddlers, children with ASD have a less varied diet. Although this study did not find any differences between children with ASD and typically developing children in terms of nutrition, other studies have found that children with ASD sometimes have deficiencies in certain nutrients, perhaps because of their picky eating or the use of special diets.
If you have concerns about your child’s eating patterns, bring this up at your next pediatrician visit. Also, discuss this with your case manager, your behaviorist, or the psychologist on your child’s early intervention team. There are many ways you can help your child eat a wider range of foods, and your therapists should be able to help you a great deal. If your doctor is concerned about your child’s nutrition, he or she may refer you to a nutritionist. Sometimes at university or hospital clinics, there is a nutritionist on the team who can provide specific suggestions regarding how to help your child eat better or how you can make sure your child is getting the nourishment he needs. There are different reasons a child may have eating difficulties, including having trouble chewing and swallowing, sensory sensitivities related to different food textures, food intolerances or allergies, and avoidance of novelty. Your early intervention team and doctor, working together, can help you determine whether you should worry about your child’s nutrition, help you understand why your child is having eating difficulties, and help you improve your child’s eating habits.
Seizures
Although seizures are not usually a problem in early childhood, approximately one out of every four individuals with ASD will develop seizures at some point in life. Seizures typically develop for the first time in adolescence or even adulthood in ASD, though occasionally they appear early in life. It is important to have seizures treated, because the seizure activity can a
ffect how the brain functions and develops. Thus, if your child has a seizure or has symptoms (described below) that suggest seizure activity, seek medical attention as soon as possible.
There are many types of seizures: seizures that involve staring spells (absence seizures), seizures that involve repetitive movements (partial complex seizures), and seizures that involve convulsions (grand mal seizures). Mild symptoms may be difficult to detect because some of the symptoms, such as staring into space and not responding when called, are also typical symptoms of ASD. Symptoms of an absence seizure may include “blanking out” or becoming unresponsive to sounds and sights for 10–20 seconds, blinking repetitively, eyes rolling up a bit, mouth movements, muscle stiffness, jerking movements, rubbing fingers together, and staring spells. If you have concerns about possible seizure activity, check with your pediatrician, who may refer your child to a child neurologist for an evaluation.
PUTTING IT ALL TOGETHER
As you can see, there are many different parts to early intervention, including the basic intervention program (either group or one-on-one), and sometimes additional therapy from a speech–language pathologist, occupational therapist, and/or physician. Over time you will learn about the choices that are available in your community, decide what you feel is best for your child, and voice your preferences so that your child gets the best services available in your community. You will need to encourage the different people working with your child to talk to each other and share information. These things need to happen, but they don’t happen automatically or all at once. They happen step by step because parents make them happen.
An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn Page 3