According to the U.S. Centers for Disease Control, 1 in 54 children are diagnosed with an autism spectrum disorder (ASD) every year. But how can parents be sure that they have received the proper assessment? And what are the key steps in ensuring that these children receive the necessary level of care?
Charles N. Cartwright, MD
An assessment should be viewed as an ongoing team effort. At the YAI Autism Center, for example, a team of professionals works together to provide a comprehensive assessment of a child’s development. We then continue to work with families to make recommendations for educational services, medical care and other critical services for children on the spectrum.
This approach is extremely valuable in creating a comprehensive treatment plan that allows for coordinated interventions and ongoing assessments that accurately gauge a child’s progress.
Child Psychiatry
A psychiatric assessment for children with an ASD should be seen within a developmental perspective. The most effective assessments will address cognitive, physical, social, emotional, language, behavioral and neurological issues.
According to a recently published article by H.L. Egger (Egger H.L. Psychiatric Assessment of Young Children) there are multiple components of a comprehensive mental-health assessment. Critical elements of any assessments are to provide an interactive play assessment with the child, and a session for parents alone without their child. This allows for more candid conversation, eliminating concern that their child may be affected by what they say. It is also valuable to observe a child at home, in school or at any programs he or she attends. By creating these opportunities, a range of developmental and mental health information can be effectively gathered.
Clinicians should achieve an understanding of how a family’s cultural values shape their views of their child, and impact their motivation to pursue a range of treatments and services. Psychiatrists should also be aware of their own cultural values, and how these values shape their formulations and treatment plans. In addition, careful attention should be paid to potential conflicts between a family’s beliefs and perceptions, and the clinician’s approach. This allows for the consideration of the whole family system, a critical factor for effective treatment planning.
Psychology
Psychologists play an important role in the multidisciplinary assessment of a child on the autism spectrum. We measure a child’s level of cognitive functioning (IQ) and perform assessments for anxiety, depression and other co-morbid conditions. As with many clinicians on the multidisciplinary team, psychologists also administer diagnostic assessments to determine an autism spectrum diagnosis.
An important element in this process is neuropsychological testing, which focuses on the different areas of a child’s cognitive functioning. Neuropsychological testing differs from general psychological testing in that it places a greater focus on determining the way the brain functions. Testing often comprises of evaluating an individual’s attention, memory, problem-solving skills and language development.
A neuropsychological assessment should be based on an individual’s level of cognitive functioning, verbal skills and other relevant information obtained through the referral process. This assessment can help parents of a child with ASD determine appropriate school placement, develop a remediation program and identify the presence of a neurological disorder.
Neuropsychological testing is normally conducted over several sessions, ideally in a quiet environment without distractions. The assessment will help provide a better understanding of a child’s functioning, a great asset in determining specific interventions and treatments. If one area of cognitive functioning is found to be a significant weakness, remediation can help improve skills that are deemed lacking.
The psychologist should work closely with the other members of the assessment team to ensure that both the evaluation and recommendations are comprehensive. Each member of the assessment team comes from a different training background and offers a unique perspective. By using a multi-disciplinary assessment team, parents are provided with a deeper understanding of their child’s functioning.
Communication
When considering the diagnostic features unique to autism, language and social skills are key areas to assess, especially for young children whose communication skills continue to develop.
Unlike cognitive skills, which can be measured using various standardized instruments, speech and language skills should be measured within both standard tests and subjective measures, such as language samples, observation measures and parent reports.
Supplementing traditional tests with an examination of social communication within a child’s natural settings is especially important for children who are higher-functioning, yet demonstrate social vulnerabilities. The pragmatic and social uses of language are often the largest areas of weakness for children with ASD. Unfortunately, they are more difficult areas of language to assess in terms of using standard, objective measures.
A recent paper published by a group of researchers with expertise in language development and ASD recommended that a language assessment for children with ASD should include measures derived from multiple sources (Tager-Flusberg et al, 2009). These sources should ideally include natural language samples, parent reporting and direct standardized assessments.
The following are a few ways to enhance language testing by gathering multiple sources of information:
Natural Language Samples – Conversation and narrative (story-telling) samples are often useful for examining spontaneous, real-time language skills. Semi-structured conversations can be collected between a clinician and a child within a short amount of time. The clinician can use specific language paradigms, as well as his or her own discretion, in order to create opportunities to judge areas such as: topic choice and maintenance, turn-taking, echolalia, voice and intonation, intelligibility, and perseveration. This type of sample can be used at the start of an assessment to establish rapport, create a relaxed environment and encourage the child to share his own experiences. Speech analysis software, such as Systematic Analysis of Language Transcripts (Miller & Chapman, 1985), can be used to analyze a child’s language skills relating to areas such as: grammatical features, response to comments and questions, and conversational turns. Language sampling over time can also be a useful way to evaluate change or progress in conversation skills.
A short story-telling assessment such as the “Bus Story” (Renfrew, 1969) and picture books such as Mercer Mayer’s “frog” series can reveal difficulties at different language levels. Research has shown validity and value in evaluating natural discourse skills in children with language delays and ASD, a linguistic area not typically examined within standard tests.
Parent and Teacher Report – Parents and teachers serve as valuable informants within the assessment process, providing information about language skills and social behavior in the home and classroom. Communication and social skills questionnaires, both standard and criterion-based, enable caregivers and teachers to describe areas of social development. These include: initiating and maintaining interactions, responding to peers and adults, understanding social rules, the use and understanding of facial expressions and gestures and the occurrence of teasing or bullying. These instruments provide descriptions and ratings of a child’s social behavior outside the testing setting, across varying contexts where real social interactions occur.
Combining the above assessment procedures can capture a complete picture of a child’s communication and social functioning, and will lend valuable information for treatment and educational services.
Occupational Therapy
Occupational Therapy (OT) enables children with ASD to develop increased independence in their daily life skills. These activities of daily living include areas of self-care (i.e. ability to brush teeth, dress oneself, or bathe independently), as well as higher level tasks such as coin identification/counting skills, travel training, and social skills training.
A comprehensive OT evaluation for a child with ASD can determine the factors that are affecting his or her ability to function independently. For example, an evaluation may detect sensory processing issues (e.g. visual and auditory impairments) that hinder a child’s ability to adapt to his home or school environment. An evaluation can also detect gross motor/fine motor (GM/FM) delays as well as delays in visual motor control, balance and coordination. It can also detect impairments in executive functioning, which includes motor planning, sequencing and step-by-step problem solving.
An occupational therapist looks at all of these areas to determine how they affect a child’s ability to function in his or her daily life. Children with impairments in executive functioning, for example, often have difficulty planning and organizing their thoughts into actions. A simple task of making a sandwich may be challenging due to the difficulty of organizing the steps that are needed to complete the task.
According to recent studies, approximately 90 percent of children on the autism spectrum have sensory processing issues. This greatly impedes their ability to function in their daily environment.
For example, a child with impaired auditory processing may become disrupted by the sound of the teacher’s voice. Even the sound of the chairs scraping the floor may be overwhelming, resulting in an inability to focus in the classroom.
Once an OT evaluation is completed, the occupational therapist will collaborate with the family and the professional team to develop a treatment plan. All treatment sessions will be client-centered and aim to improve a child’s ability to function optimally and increase their independence in their daily lives.
Social Work
In terms of obtaining evaluations, social workers are often the first point of contact for families. Social workers compile psychosocial evaluations that assess a family’s history and observe problems described by a parent or guardian. Social workers also attempt to record the overall developmental history of a child from pre-natal care to the present.
This information is often critical in determining the next steps for evaluations. Social workers ideally work in a multidisciplinary context, sharing information with colleagues, who will later meet with family members to determine appropriate services. While other professionals will evaluate a child using assessment tools and standardized evaluations, social workers record the parents’ unique perspective. This empowers parents as the experts of their children, and emphasizes their specific viewpoint and the developmental trajectory to date.
The psychosocial interview provides a comprehensive perspective and should reflect the family constellation, current and past interventions, and a catalogue of developmental milestones. Since other evaluations tend to be limited, this is a crucial component of evaluating autism spectrum disorders. These interviews enable us to comprehend a child as a total package from an individualistic perspective.
The social worker also acts as a family’s referral source and ongoing contact as they move forward. While the evaluation process can often be a challenging experience for a family as well as the child, social workers provide needed support as the family continues to explore the appropriate steps for their child.
Often, the stress of having a child with special needs such as autism can be significant for a family. Stress can echo into the lives of every member of the family, from the impact on a sibling to distance between the parents. Social workers help to identify and address these emotions early on – before they create lasting divisions within the family system.
Ideally, the evaluation process should be a smooth and supportive experience for a family. The social worker’s most important role is to set the tone, to be accessible to the family, and to instill confidence as the process unfolds.
Reinforcing the Team Approach
While it is clear that obtaining a proper assessment and the necessary services for children with ASDs may not always be easy, it is important for families to remember that they are not alone. Rather, they are a vital part of a team that includes dedicated professionals committed to helping a child reach his or her fullest potential.
