FAQs
Frequently Asked Questions about Early Identification and Diagnosis of ASD
1. What should or shouldn’t I do if I suspect someone has characteristics of ASD? >>
2. How do I find out about what diagnostic resources are available in my community? >>
3. Who can make a diagnosis of ASD? >>
7. What do I do if a parent questions the diagnosis of ASD for their child? >>
1. What should or shouldn't I do if I suspect someone has characteristics of ASD?
If you suspect a child has characteristics of ASD, you have an important role in informing the child’s parents of your concerns. This is best done within the context of an ongoing working relationship with the family. The most important outcome of your initial conversation should be set up as a scheduled meeting, not an informal conversation that occurs during other interactions. The purpose of your initial discussion is to explain what behaviors you have observed, why these concern you, how parents can follow up to have the characteristics evaluated, what the evaluation process may consist of, and to recommend the first step, referral to their health care professional for screening and further assessment. It may not be important, or even advisable, to raise your concern about ASD as a specific diagnosis. Whether you mention it or not depends on what you have learned about the parents questions or concerns prior to your scheduled meeting. Diagnosis is the outcome of the evaluation process. It is more useful to the family for you to list the behaviors that concern you: language, social, behavioral, developmental. To start the conversation, you could begin by describing some of the child’s strengths and positive qualities, and then following by saying something like “I have also noticed that your child……Have you seen this, too? Is this typical of behavior you see at home?” Families may or may not endorse your observations. Be careful not to enter into a debate about your perceptions of the child’s behavior, and do not press a parent to agree with your perceptions. Your job is to provide information to families about their child. It is never appropriate to make a diagnosis during an initial conversation.
The family may ask you to help identify resources for an evaluation and it is appropriate to refer the family both to their primary health care professional and to the early intervention program or school district in their community, if this hasn’t already occurred. It is important to continue to support the family and answer their questions, remembering that it is always appropriate to say “I don’t know” as an honest answer to their questions. You will likely not have answers for all of their inquiries. The outcome of your conversation will depend upon how the information fits with concerns the parent(s) may or may not already have. Raising your concerns is extremely important, whether or not the family is ready to follow up with them. If the family wants to pursue the concerns, be sure to end the conversation with a plan for follow up so the family has a plan of action to follow.
2. How do I find out about what diagnostic resources are available in my community?
One of the best ways to find out about diagnostic resources is to check with a child’s primary care physician or other medical specialists. Many major medical centers and clinics have ASD diagnostic services. In addition, there are information and resource centers or hotlines in many states that keep track of diagnostic resources within a state or community. These resources may be sponsored by Public Health or Title V (Children and Youth with Special Health Care Needs) Programs [PDF].Parent organizations (e.g., Autism Society of America, Family Voices) maintain information about diagnostic centers. In most states, the University Centers for Excellence in Developmental Disabilities (UCEDD) have ASD diagnostic services or information about the services in their state or region. Contact information for the UCEDD in each state is available at the Association of University Centers on Disabilities (AUCD) website.
School districts have responsibility for child find, ages birth to 22. For a child in the birth to 3 age range, special education personnel will be able to help families locate the early intervention services in their community, even if they aren’t provided through the school district. For children 36 months and older, a referral to the local school district would result in the offer of developmental evaluations as well as access to a group of professional who can help families locate additional resources. There are multipe ways to learn about the resources in your community; there are no wrong entry points. It is a good idea to maintain information that is current and readily accessible for two or three key resources in your community so that you can easily make these available to parents. Sometimes parents are very nervous about making the initial calls. You may consider offering to help them do so by helping them call from your office so you can be a support to them before and after the call. However, if the family wants you to make the initial calls, be sure you have the written consent of the family to share information to the source being called before you place the call yourself; otherwise you would be breaching the family’s right to confidentiality and thus violating ethical standards.
3. Who can make a diagnosis of ASD?
Professionals from medicine and clinical psychology are credentialed to diagnose ASD. At many diagnostic centers, an interdisciplinary team of professionals is headed by a physician (e.g. developmental behavioral pediatrician), psychiatrist or clinical psychologist. Other team members may include speech-language pathologists, occupational therapists, physical therapists, nurses, nutritionists, and/or social workers. Medical specialists may also be involved to address related medical concerns (e.g., neurology, genetics, and gastroenterology). Community pediatricians, psychiatrists, and neurologists frequently make the diagnosis as well. They often use an autism specific tool as well as the reports from other disciplines to support the diagnosis.
Multi-disciplinary school teams may find a child eligible for special education services with an educational, rather than medical, classification of autism. This classification is determined by a team with many of the same disciplines that are listed above, plus educators and administrators. (See Question 8 for additional information.) It is important to understand the criteria and processes developed by each state for an educational classification of autism. This is all that is needed for children to receive educational services. A medical diagnoses of ASD is NOT necessary for a child to receive services.
All diagnosis of ASD should be based on the use of the tools and strategies recommended in the early identification module.
4. Why is it important to use autism specific instruments in the context of compreshensive developmental and health assessments?
Children with a variety of developmental disorders may have some behaviors that are also seen in ASD. In order to avoid diagnostic errors, a number of diagnostic measures have been developed that have been tested and proven to differentiate ASD form other developmental difficulties. These tools help to establish standards and consistency in protocols across professionals and settings. Use of these instruments offers assurances to families that their child’s diagnosis is based on the best available tools. In addition, it is ethical professional behavior to responsibly use diagnostic labels that help a child and family access resources and services. An annotated list of these instruments is included in this module. However, diagnosis is the result of clinical judgment, not a test score. Test scores are part of the information available to the diagnostician, but diagnosis is also dependent on the child’s history, parent descriptions of child behavior across multiple environments, and direct observation of symptoms.
5. What can be done if there are long waiting periods for obtaining a diagnostic assessment appointment? Is a child eligible for services while waiting for a diagnosis?
Waiting for a diagnostic evaluation does not mean that a child and family have to go without services and resources. A diagnosis of ASD is not required to be determined eligible to receive services. A young child with characteristics of ASD may be eligible for early intervention or special education services due to delays and differences in their development. In addition, a family may obtain other services such as speech and language therapy, occupational therapy or behavioral consultation from a psychologist in a clinical setting with a referral from the child’s primary care physician. Even if there are long waiting periods for medical diagnoses, it is best to make the appointment and wait. While waiting, there are opportunities to gather information from the providers (e.g., early intervention, child care providers, special educators, therapists) already involved with the child and family that may be helpful to the diagnostic evaluation. This would include discipline specific evaluation findings as well as narrative descriptions of a child’s learning, behavior and special interests. For example, an early interventionist, therapist or child care provider could write down examples of demonstrated capabilities as well as examples of behaviors that have been troublesome.
6. How can I and/or our team be helpful to a family who has recently received a diagnosis of autism?
Be patient, compassionate and available for communication. Listen to the family’s concerns and worries. Do not be concerned if the family is rejecting the diagnosis – there is no need for you to convince them and to try to do so will limit your ability to provide help and support. As long as the family is accessing services for the child, some acceptance of the child’s needs has occurred and the family is taking appropriate steps. Each family’s timing and needs for support and information around a new diagnosis are different. It is important to discover what those are for each family without making assumptions. We often hear from parents that having someone to listen, answer questions and provide information and resources is invaluable. This approach helps to build a trusting relationship in the early days after a diagnosis of ASD. Parents also appreciate opportunities to meet other parents of children with an ASD or other diagnosis. Consider the resources in your community for connections. This may include informal connections that you may be able to set up or a referral to a program or website that specializes in parent-to-parent matches. Organizations such as the Autism Society of America, Family Voices, and Parent-to-Parent Programs have chapters in many states and communities. They are excellent resources for such support.
7. What do I do if a parent questions the diagnosis of ASD for their child?
Listen and try to understand why the diagnosis is being questioned. Try to discover if the parent needs more information or has had a difficult experience with the diagnosis process, or some related situation. Also consider if another family member (e.g., grandparent, parent) or friend may have raised questions that has led to the questioning. Often when parents are struggling with a new diagnosis, they are well aware of the concerns, but begin to second guess or excuse their concerns as part of the process of coming to terms with their child’s condition. In some instances, you may discover that the parents have good reasons for questioning the diagnosis. In this case, it may be helpful to suggest a second professional opinion. In all situations, the goal is to support the parents as they process the new information they have received about their child: listening, exploring and identifying alternative strategies helps the parent address what is causing them to question the diagnosis. At times, this may include referral to a mental health professional for counseling, especially if you perceive the situation is more complex than what you are prepared to address. In the end, it is the parent’s choice to accept or to refuse further services for their child.
8. Is a diagnosis of ASD necessary for a child to receive early intervention or special educational services?
No. A child is eligible for early intervention services, resources and supports based on documentation of a developmental delay or a diagnosed condition. A diagnosis is not required to meet eligibility criteria. To receive special education services through a public school, a child is found eligible through a team-based evaluation process that results in a special education classification. This may include the classification of autism, but the team may find a child to be eligible for special education services through another classification such as a learning disability, behavior/emotional disorder, cognitive/intellectual disability, or speech/language impairment. Once eligible, the child’s educational needs, not the classification, guide decisions about a child’s educational services and resources.
9. Does a clinical/medical diagnosis of autism and an educational classification of autism help a child access the same services, resources, and supports?
No. A clinical/medical diagnosis of autism may help a child access health care and other related services and supports. For example, in some states, a clinical/medical diagnosis of autism is required to receive intensive in-home intervention services through a publicly funded program (e.g., Medicaid) or private health insurance. The ASD clinical/medical diagnosis may also help to access other services such as respite care and other family support benefits. A medical/clinical diagnosis does not mean a child is eligible for special education services. Special education services can only be accessed when a disability is determined and the need for special education is established. The sole purpose of an educational classification is to identify eligibility for special education and related services to address the educational needs of a child.