The Diagnosis of Autism Spectrum Disorders
Although there are many concerns about labeling a young child with an ASD, the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational settings for at least 2 years during the preschool years results in improved outcomes in most young children with ASD. 2
In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristic behaviors of ASD may be apparent in the first few months of a child’s life, or they may appear at any time during the early years. For the diagnosis, problems in at least one of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two-stage process. The first stage involves developmental screening during “well child” check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team. 7
A “well child” check-up should include a developmental screening test. If your child’s pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your child’s development will be essential in helping to screen your child. 7 Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones.
Several screening instruments have been developed to quickly gather information about a child’s social and communicative development within medical settings. Among them are the Checklist of Autism in Toddlers (CHAT), 8 the modified Checklist for Autism in Toddlers (M-CHAT), 9 the Screening Tool for Autism in Two-Year-Olds (STAT), 10 and the Social Communication Questionnaire (SCQ) 11 (for children 4 years of age and older).
Some screening instruments rely solely on parent responses to a questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild ASD, such as those with high-functioning autism or Asperger syndrome.
During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism. The Autism Spectrum Screening Questionnaire (ASSQ), 12 the Australian Scale for Asperger’s Syndrome, 13 and the most recent, the Childhood Asperger Syndrome Test (CAST), 14 are some of the instruments that are reliable for identification of school-age children with Asperger syndrome or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay.
If, following the screening process or during a routine “well child” check-up, your child’s doctor sees any of the possible indicators of ASD, further evaluation is indicated.
Comprehensive Diagnostic Evaluation
The second stage of diagnosis must be comprehensive in order to accurately rule in or rule out an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnose children with ASD.
Because ASD’s are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neurologic and genetic assessment, along with in-depth cognitive and language testing. 7 In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R)15 and the Autism Diagnostic Observation Schedule (ADOS-G).16 The ADI-R is a structured interview that contains over 100 items and is conducted with a caregiver. It consists of four main factors-the child’s communication, social interaction, repetitive behaviors, and age-of-onset symptoms. The ADOS-G is an observational measure used to “press” for socio-communicative behaviors that are often delayed, abnormal, or absent in children with ASD.
Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS).17 It aids in evaluating the child’s body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age. The examiner observes the child and also obtains relevant information from the parents. The child’s behavior is rated on a scale based on deviation from the typical behavior of children of the same age.
Two other tests that should be used to assess any child with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral-motor stage in which they put any and everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels. 7
Customarily, an expert diagnostic team has the responsibility of thoroughly evaluating the child, assessing the child’s unique strengths and weaknesses, and determining a formal diagnosis. The team will then meet with the parents to explain the results of the evaluation.
Although parents may have been aware that something was not “quite right” with their child, when the diagnosis is given, it is a devastating blow. At such a time, it is hard to stay focused on asking questions. But while members of the evaluation team are together is the best opportunity the parents will have to ask questions and get recommendations on what further steps they should take for their child. Learning as much as possible at this meeting is very important, but it is helpful to leave this meeting with the name or names of professionals who can be contacted if the parents have further questions.
When your child has been evaluated and diagnosed with an autism spectrum disorder, you may feel inadequate to help your child develop to the fullest extent of his or her ability. As you begin to look at treatment options and at the types of aid available for a child with a disability, you will find out that there is help for you. It is going to be difficult to learn and remember everything you need to know about the resources that will be most helpful. Write down everything. If you keep a notebook, you will have a foolproof method of recalling information. Keep a record of the doctors’ reports and the evaluation your child has been given so that his or her eligibility for special programs will be documented. Learn everything you can about special programs for your child; the more you know, the more effectively you can advocate.
For every child eligible for special programs, each state guarantees special education and related services. The Individuals with Disabilities Education Act (IDEA) is a Federally mandated program that assures a free and appropriate public education for children with diagnosed learning deficits. Usually children are placed in public schools and the school district pays for all necessary services. These will include, as needed, services by a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide.
By law, the public schools must prepare and carry out a set of instruction goals, or specific skills, for every child in a special education program. The list of skills is known as the child’s Individualized Education Program (IEP). The IEP is an agreement between the school and the family on the child’s goals. When your child’s IEP is developed, you will be asked to attend the meeting. There will be several people at this meeting, including a special education teacher, a representative of the public schools who is knowledgeable about the program, other individuals invited by the school or by you (you may want to bring a relative, a child care provider, or a supportive close friend who knows your child well). Parents play an important part in creating the program, as they know their child and his or her needs best. Once your child’s IEP is developed, a meeting is scheduled once a year to review your child’s progress and to make any alterations to reflect his or her changing needs.
If your child is under 3 years of age and has special needs, he or she should be eligible for an early intervention program; this program is available in every state. Each state decides which agency will be the lead agency in the early intervention program. The early intervention services are provided by workers qualified to care for toddlers with disabilities and are usually in the child’s home or a place familiar to the child. The services provided are written into an Individualized Family Service Plan (IFSP) that is reviewed at least once every 6 months. The plan will describe services that will be provided to the child, but will also describe services for parents to help them in daily activities with their child and for siblings to help them adjust to having a brother or sister with ASD.
There is a list of resources at the back of the brochure that will be helpful to you as you look for programs for your child.
There is no single best treatment package for all children with ASD. One point that most professionals agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs.
Before you make decisions on your child’s treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your child’s treatment based on your child’s needs. You may want to visit public schools in your area to see the type of program they offer to special needs children.
Guidelines used by the Autism Society of America include the following questions parents can ask about potential treatments:
- Will the treatment result in harm to my child?
- How will failure of the treatment affect my child and family?
- Has the treatment been validated scientifically?
- Are there assessment procedures specified?
- How will the treatment be integrated into my child’s current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.
The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child:
- How successful has the program been for other children?
- How many children have gone on to placement in a regular school and how have they performed? * Do staff members have training and experience in working with children and adolescents with autism?
- How are activities planned and organized?
- Are there predictable daily schedules and routines?
- How much individual attention will my child receive?
- How is progress measured? Will my child’s behavior be closely observed and recorded?
- Will my child be given tasks and rewards that are personally motivating?
- Is the environment designed to minimize distractions?
- Will the program prepare me to continue the therapy at home?
- What is the cost, time commitment, and location of the program?
Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon General states, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.” 18 The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one child-teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones. 19, 20
An effective treatment program will build on the child’s interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child’s attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child’s earliest teachers, more programs are beginning to train parents to continue the therapy at home.
As soon as a child’s disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and initiative of interaction. Included are behavioral methods, communication, occupational and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles together, paint, and participate in other motor skills activities. At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with the children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used. 21
Children older than 3 years usually have school-based, individualized, special education. The child may be in a segregated class with other autistic children or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the children learn social skills and functional communication. In these programs, teachers often involve the parents, giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home. 22
In elementary school, the child should receive help in any skill area that is delayed and, at the same time, be encouraged to grow in his or her areas of strength. Ideally, the curriculum should be adapted to the individual child’s needs. Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for a part of the day. This instruction should include such skills as learning how to act in social situations and in making friends. Although higher-functioning children may be able to handle academic work, they too need help to organize tasks and avoid distractions.
During middle and high school years, instruction will begin to address such practical matters as work, community living, and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living. 23
All through your child’s school years, you will want to be an active participant in his or her education program. Collaboration between parents and educators is essential in evaluating your child’s progress.
The Adolescent Years
Adolescence is a time of stress and confusion; and it is no less so for teenagers with autism. Like all children, they need help in dealing with their budding sexuality. While some behaviors improve during the teenage years, some get worse. Increased autistic or aggressive behavior may be one way some teens express their newfound tension and confusion.
The teenage years are also a time when children become more socially sensitive. At the age that most teenagers are concerned with acne, popularity, grades, and dates, teens with autism may become painfully aware that they are different from their peers. They may notice that they lack friends. And unlike their schoolmates, they aren’t dating or planning for a career. For some, the sadness that comes with such realization motivates them to learn new behaviors and acquire better social skills.
Dietary and Other Interventions
In an effort to do everything possible to help their children, many parents continually seek new treatments. Some treatments are developed by reputable therapists or by parents of a child with ASD. Although an unproven treatment may help one child, it may not prove beneficial to another. To be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double-blind trials, that would allow for a comparison between treatment and no treatment. Following are some of the interventions that have been reported to have been helpful to some children but whose efficacy or safety has not been proven.
Dietary interventions are based on the idea that 1) food allergies cause symptoms of autism, and 2) an insufficiency of a specific vitamin or mineral may cause some autistic symptoms. If parents decide to try for a given period of time a special diet, they should be sure that the child’s nutritional status is measured carefully.
A diet that some parents have found was helpful to their autistic child is a gluten-free, casein-free diet. Gluten is a casein-like substance that is found in the seeds of various cereal plants-wheat, oat, rye, and barley. Casein is the principal protein in milk. Since gluten and milk are found in many of the foods we eat, following a gluten-free, casein-free diet is difficult.
A supplement that some parents feel is beneficial for an autistic child is Vitamin B6, taken with magnesium (which makes the vitamin effective). The result of research studies is mixed; some children respond positively, some negatively, some not at all or very little. 4
In the search for treatment for autism, there has been discussion in the last few years about the use of secretin, a substance approved by the Food and Drug Administration (FDA) for a single dose normally given to aid in diagnosis of a gastrointestinal problem. Anecdotal reports have shown improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. Several clinical trials conducted in the last few years have found no significant improvements in symptoms between patients who received secretin and those who received a placebo. 24