For many families and caregivers, entry into the world of autism spectrum disorders (ASD) first begins as part of their search for an accurate diagnosis – the answer that can help explain their child’s behavior, strengths, and weaknesses. This “assessment process,” which for some families can take years and may involve appointments with numerous professionals with differing opinions, is often reported to be both stressful and overwhelming (Brogan & Knussen, 2003; Goin-Kochel et al., 2006; Osborne & Reid, 2008). Early in the process, families are faced with many difficult issues about which they need to make decisions including acknowledging the need for an assessment, and where to take their child for an evaluation. Other questions rapidly follow, and can easily paralyze even the most organized and determined of parents. What services does my child need at school, at home, and in the community? Where can I learn about what services and resources are available? When will have I time for all of this? How can I trust another professional after the negative experiences we’ve had?
Different approaches to ASD diagnosis and assessment are practiced in the professional community and they vary in their extensiveness. Many parents have reported receiving a diagnosis in their primary care practitioner’s office after a fifteen minute meeting, whereas other families have participated in global assessments at specialty clinics. The very nature of ASD as a complex syndrome disorder implies deficits in multiple developmental areas, each of which requires careful attention. In addition, the variability that is observed across individuals with ASD, and the subtleties of symptom presentation, can make the diagnostic process challenging. For these reasons, a comprehensive evaluation most often best meets the needs of families in acquiring a better understanding of their child and informing interventions.
A comprehensive evaluation requires a multidisciplinary team of professionals who are trained in conducting diagnostic assessments and in evaluating many areas of functioning. Typically, a Multidisciplinary Team Assessment involves a diagnostician (often a psychologist, psychiatrist, or developmental pediatrician), a speech-language pathologist, and a social worker. Other members of multidisciplinary teams may include an occupational therapist, a physical therapist, and a neurologist. The benefit of a multidisciplinary evaluation is that team members work together and bring their specific discipline’s expertise to not only develop a comprehensive understanding of the referred individual, but also to provide recommendations for education and treatment across all domains of functioning. Below we review the steps that are a part of participating in a comprehensive diagnostic assessment. Step 1: Become knowledgeable about the services in your area in order to find a clinic that follows a Multidisciplinary Team Assessment model
If you live in an urban area, your physician may be aware of specialty clinics that serve individuals with ASD and their families. It may also be beneficial to attend a meeting of a local support group, or to participate in a workshop. This provides families the opportunity to network with other parents who have already been through the diagnostic process and who truly understand the complex challenges of parenting a child with ASD. Conducting an online search of reliable websites can also be helpful (for example, Autism Society of America). You can often find local discussion boards or clinic websites which describe the range of services provided. For those in the New York area, the Aspergers Syndrome and High Functioning Autism Association (AHANY: www.ahany.org) provides free monthly support groups and a daily hotline for parents and caregivers looking for support and information.
Step 2: Contact a clinic and participate in their pre-assessment process
Once you have some referrals for clinics, the next step is to contact the center to inquire about their assessment services and the evaluation process. Ideally, a clinic will have an intake coordinator or social worker who can provide caregivers with clear and comprehensive answers to their questions, and guidance if families are unsure what services they are looking for. An essential question for families to ask concerns the level of experience the clinical staff has in working with individuals who are similar to their child. For example, does the center primarily serve preschool-aged children? Does the clinical team work with young adults with Asperger’s? How much experience has the clinical team had in diagnosing girls with ASD? It is very important to find a program that encourages questions and being able to openly share concerns, worries, and hopes. Characteristics of an ideal comprehensive assessment center include:
- An intake coordinator or social worker to support families when they are deciding what services to pursue and throughout the duration of the assessment
- A multidisciplinary team approach
- An assessment process that is clearly described and outlined, including a parent feedback session at the end of the evaluation
- A caregiver interview including a thorough developmental history
- A comprehensive review of school records and prior evaluations
- Use of gold standard diagnostic assessment measures
- Developmental, cognitive, achievement, speech-language, behavioral, play, emotional, and adaptive functioning assessments as needed
- Opportunity for observation of the individual in their home, educational, or other setting if desired
- A multidisciplinary team/family feedback session to discuss the findings and implications of the assessment and recommendations for next steps
- The assessment team incorporates the latest research findings into their clinical practice
- A detailed written report summarizing the assessment findings and outlining recommendations (e.g., educational, social, behavioral, resources) is provided to the family
- Referrals to other pediatric specialists are provided as appropriate (e.g., psychiatry, ear nose and throat, neurology, gastroenterology, sleep clinic, nutritionist, gynecology)
- A post-evaluation appointment with the social worker is available following receipt of the report for families to discuss the assessment findings and recommendations
- Most importantly, a clinical team that is warm, caring, understanding, energetic, and dedicated to assisting the families they work with.
An initial phone intake may be required prior to moving forward with a first appointment. It will be suggested at this time that you gather and submit all reports and assessments completed in the past (e.g., psychological, speech-language, psychosocial, medical, psychiatric), including the individual’s most recent Individualized Educational Plan (IEP). Families have reported that it can be extremely helpful to keep a binder to organize these documents and all other paperwork and correspondence pertaining to their child or the individual being referred. The clinic will also likely send out forms and questionnaires to be completed prior to the first appointment.
Step 3: The multidisciplinary assessment
At times, families are not immediately ready to start a full assessment without having had the opportunity to meet with and discuss their concerns with someone from the clinical team. The first stage of a multidisciplinary assessment can often be a consultation with the team social worker, during which parents are provided with more information about available services, and information is gathered pertaining to the child’s developmental, medical, diagnostic and educational history. If a family decides that they would like to continue the assessment process, the social worker shares the information gathered during this meeting with the multidisciplinary clinical team. Members of the team must review prior information received and work closely together in order to collaborate on assessment goals and to develop an individualized comprehensive assessment plan. A carefully designed assessment is necessary in order to achieve optimal functional impact of the evaluation.
The number of appointments required as part of a multidisciplinary assessment can vary. Some centers offer clinics during which most testing is conducted on a single day. Other centers offer appointments over the course of a number of weeks. Ideally, a clinical team will develop an assessment schedule that fits best with the objectives of the evaluation. Waitlists for such assessments can also vary greatly across centers, and typically range from one week to a number of months.
Whether the assessment takes place during a single appointment or over the course of a number of days, families should expect to be kept informed about what will be happening during each session, and what role they can/should play (e.g., sitting in the room, completing questionnaires, participating in an interview). Parents should feel comfortable asking any questions they have during the assessment process, and need to be provided a specific contact person whom they can call throughout the evaluation; this team member is typically the social worker.
The final stage of a multidisciplinary assessment is the parent/client feedback session. The parent(s)/caregiver(s) or clients themselves (if an adult) meet with some or all members of the clinical team to discuss findings, diagnosis, and recommendations. Even though issues related to ASD are often complex, the clinical team should present the findings from the evaluation in a way that is as clear and easy to understand as possible. The team should also encourage a family or client to ask any questions they may have about the information they are receiving. It is never sufficient for clinicians to present findings without also presenting a comprehensive set of recommendations, next steps, and resources. Unfortunately, many families have reported that they “got very little” out of their evaluation and were sent on their way with a diagnosis only and no next steps that they could pursue regarding intervention (Osborne & Reed, 2008).
It is often not easy for parents to process a lot of information during a feedback meeting that can be both emotional and overwhelming. As such, the importance of a comprehensive written report cannot be underestimated. The report from a multidisciplinary team evaluation should provide information about the assessments conducted, the findings from each assessment, a summary and diagnoses, and recommendations for school, home, and the community. Families or individuals should always feel that they have been given concrete suggestions for what they should do next, and what steps are most important to take (e.g., calling the school district to request a CSE meeting).
Step 4: After the assessment
Some time after the feedback session, typically from a week to two months, the written report is mailed out. What happens next? Again, families have reported that following their assessment they often feel left on their own to figure out how to proceed. During an evaluation, a family establishes an important relationship with the clinical team, and it can be highly beneficial for families to be able to reconnect after they have had some time to think about the assessment findings and read the written report. At our clinic, families have the opportunity to schedule a “follow-up consult” with the team social worker. Next steps are highly individualized and different for each client seen at our clinic for an evaluation. The social worker assists families in navigating resources based on their child’s age, diagnosis, recommendations from the clinical team, and current education and community services. If a clinic provides a continuum of services, families may be eligible to participate in interventions that are ongoing. Some of the following suggestions are discussed with families at our program:
Review of the Multidisciplinary Assessment Report: It is suggested to families that they send a copy of their child’s report to the school and request a CSE meeting to discuss the recommendations that are outlined. For older clients, we recommend sharing the report with job coaches, post-secondary school counselors, therapists or other service providers as appropriate.
Center-Based Individual Services: Families can discuss the services offered at our Center that are a good fit for their child, such as social skills or cognitive-behavioral therapy groups, individual counseling, psychiatry services, speech language therapy, and recreation activities.
Center-Based Parent Support: Parents can join one of the information and networking groups facilitated by the Center’s social worker, participate in individual parent training or family psychotherapy, or attend one of the Center’s educational workshops.
Community-Based Services: Recommendations are provided for wide range of community activities and services (e.g., recreation, camps, dentists, social groups).
Other Services and Programs: Eligible families have the opportunity to learn about state and federally funded programs including Medicaid and Medicare, Social Security Entitlement, and Vocational and Educational Services for Individuals with Disabilities (VESID). Families can also learn about community organizations such as GRASP, the Global and Regional Asperger Syndrome Partnership, and community services related to life planning (e.g., supplemental needs trusts, guardianship).
When a child or an adult is thought to possibly have an autism spectrum disorder, obtaining an accurate diagnosis can be a daunting process. It can be time consuming, costly, emotionally draining, and confusing. However, the process can be made easier and result in a wealth of information and guidance when qualified professionals conduct a comprehensive diagnostic evaluation and assessment of functioning in all domains. This article aimed to provide parents and caretakers with information about pursing such a multidisciplinary team assessment. The Fay J. Lindner Center for Autism and Developmental Disabilities at Advantage Care Diagnostic and Treatment Center, affiliate of AHRC Nassau and NS-LIJ Health System, provides assessment services following a multidisciplinary model. Families, individuals, and professionals are welcome to contact the Center at any time to discuss services. Georgianna Reilly, intake coordinator, can be reached at (516) 686-4440.
Halley Ceglia, LMSW, is Social Worker, Georgianna Reilly, BSc, is Intake Coordinator, and Shana Nichols, PhD, is Clinical Director at the Fay J. Lindner Center for Autism and Developmental Disabilities at Advantage Care Diagnostic and Treatment Center, affiliate of AHRC Nassau and NS-LIJ Health System.
References
Brogan, C.A., & Knussen, C. (2003). The disclosure of a diagnosis of an autism spectrum disorder: Determinants of satisfaction in a sample of Scottish parents. Autism, 7, 31-46.
Goin-Kochel, R.P., Mackintosh, V.H., & Myers, B.J. (2006). How many doctors does it take to take an autism spectrum diagnosis? Autism, 10, 439-451.
Osborne, L.A., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12, 309-324.
