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Guidelines for Effective Feedback following a diagnostic Autism evaluation

By Shital Gaitonde, PhD

Feedback session following an Autism evaluation is a crucial part of the diagnostic assessment. I believe that the feedback session is not a mere culmination of the assessment process, rather, it is a new beginning, thus laying a strong foundation for designing the child’s treatment plan.

 

According to the APA’s ethics code, we as psychologists are expected to take reasonable steps to explain results obtained from a psychological assessment. The American Psychological Association's Ethical Principles of Psychologists and Code of Conduct (adopted in 2002) standard 9.10 states the following: Regardless of whether the scoring and interpretation are done by psychologists, by employees or assistants, or by automated or other outside services, psychologists take reasonable steps to ensure that explanations of results are given to the individual or designated representative.

 

Getting a diagnosis of a developmental delay is devastating for many parents (Hasnat and Graves, 2000).  Parents describe that memory as being stressful and overwhelming. A survey of parents of children newly diagnosed with Autism spectrum disorder (Crane et al, 2016) revealed that satisfaction with how the diagnosing clinician “broke the news” was a significant predictor of parents’ overall satisfaction with the diagnostic process. This satisfaction, in turn can affect parents’ trust in clinicians and the system as a whole, thus delaying interventions for these children. Hence, how initial diagnoses are communicated to parents of children with developmental disabilities becomes very important and needs to be carefully planned.

As clinicians, we can find feedbacks stressful as well. Most of the times, when all the data make sense and are consistent with parental concerns and clinical judgement, to an experienced clinician, the process can appear seamless. However, when the parents are not expecting the diagnosis, or if they are not believing in the diagnosis provided, that can leave us frustrated and helpless at their negative reactions/disagreements. We all know that there cannot be a one-size-fits-all formula for an effective feedback. However, here is a compilation of few basic guidelines that can be helpful to my fellow clinicians:

1. Establish a rapport: This first step is extremely important and cannot be overlooked. The seeds of the feedback session are sown as early as the initial phone intake. When the parent makes their first phone call, they may be anxious about talking to a “psychologist.” The way you present at that first phone call sets the tone for the entire process.  The family needs to have evidence at each stage that you are willing to listen and answer their questions. During the first intake session, it helps to validate parents and reflect on their concerns. This can be done by summarizing parents’ referral question/concerns. Additionally, it helps to provide an initial preliminary diagnostic impression (differential diagnoses) in that first session, of course with the caveat that you need more information to rule in/rule out your preliminary diagnosis. This helps to set the stage for the feedback session. Also, at the end of the testing sessions, it helps to provide families an update about clinician’s observations and preliminary diagnostic impressions, while asking for clarification from the parents. For example, asking parents whether they have observed some of the child’s behaviors in other settings or asking why they think their child exhibits behaviors only in specific settings. This approach of treating parents as co-experts helps in gaining trust, as we give feedback about the child’s strengths and weaknesses.

 

2. Feedback needs to be timely: Delays in receiving a diagnosis can lead to low levels of parental satisfaction with the diagnostic process (Howlin and Moore, 1997). Parents who experience a long diagnostic delay tend to lose confidence in the healthcare professionals involved and are more likely to seek alternative treatments with limited empirical support (Harrington et al., 2006).

 

The timing of the feedback depends on various factors, the most challenging being timeliness on the part of parents and teachers to return completed rating scales. With the pandemic, many clinicians have had to switch to electronic rating scales. Although expensive to the clinician, it has proven to be convenient, not only for a busy teacher to complete the rating scales in a timely manner, but also for a busy clinician to track the progress and send timely reminders.

 

Typically, feedbacks occur 1-3 weeks after the evaluation session. For some practices and organizations, the feedbacks are conducted on the day of the evaluation or in a couple of weeks following the evaluation. Although getting a diagnosis the day of the evaluation could be overwhelming for many parents; the advantage is that the children can start seeking services sooner and not wait weeks to receive recommendations. If the clinician anticipates taking longer to write the report and if the diagnosis is clear at evaluation, it is typically helpful for families to receive a letter of referral for services recommended so that the families can start seeking services sooner.

 

3. Plan the session: Handling the diagnosis in a thoughtful and sensitive way is very important and careful planning is necessary. As you are planning this session, these questions may be helpful to plan the “who, what, and how:”

 

a. How is the diagnosis going to help this child?

b. How receptive are the parents going to be?

c. How much support do they have in their community?

d. Do they have the resources (financial, time, availability of services, etc.) to seek services        for the child?

e. How does the culture of the family and the clinician influence this process?

 

Who should be involved? Most parents do not think about who they would want to involve in the feedback session because they may not know they can invite others involved with their child’s caregiving. Having a support person at feedback usually helps the parent if they choose to have one. Sometimes, grandparents may be active caregivers and may want to be involved in their grandchild’s session. Families may like to involve their own or their child’s therapists. The best way to decide who should be involved is to ask the parents and let them know that it is okay to have more people involved, since they will be building a team for their child. If parents would want their child (who is the patient) and/or siblings to be involved, then a separate session may need to be planned and the diagnosis may need to be explained in a developmentally appropriate language. Additionally, if the assessment was done by a team, then the lead clinician may need to evaluate whether having the entire team or a part of the team will be helpful. Clinicians may need to consider whether the parent can handle being in a meeting with several people. 

 

What should be included? Here is a typical plan to follow during the feedback session:

1. Start with the referral question.

2. Orient them to the structure of the report.

3. Explain to them in simple language what the purpose of each of the tests was.

4. Explain what the scores mean.

5. Explain the strengths and weaknesses of the child.

6. Present visuals in the form of graphs, matrix, tables, or videos. A draft report usually helps parents follow along.

  

Common reactions/Concerns that need to be addressed: Clinicians need to be prepared for a wide range of reactions and emotions. Gauge for parents’ understanding of the material as well as, how they are feeling. Provide parents time  they need to talk about their fears and concerns (Sharp, Strauss, & Lorch, 1992). Some of the common emotional responses that clinicians may need to address include the following:

 

a. Acceptance and Denial: I think my child will outgrow his/her delays. Will my child stay with the diagnosis for his life? I have heard about children losing their diagnosis. My friend’s child also exhibits the same behaviors as my child, but neither they nor their pediatrician are concerned about their child.

 

b. Guilt: Did I cause this? Did the lack of exposure to social environments during COVID-19 pandemic cause this?

 

c. Worry about the future: Will my child be able to have a job and lead a normal life?

 

d. Worry about the label: Will the label hinder my child’s admissions in school/gifted programs?  

 

There may be times when we as clinicians may not know the answer to parents’ questions. When we are not sure and do not have enough research to support our response, the clinician should feel free to say, “I don’t know.” “ I can find out about that and get back to you.”  Several studies have revealed that parents appreciate it when clinicians are honest and willing to support them with additional information. (Quine & Pahl, 1986; Carlsson et al., 2016). Additionally, if you feel like the family needs more sessions to process information, parents highly value that opportunity (Carlsson et al., 2016).

4. Make feedback relevant and specific: We as professionals use medical jargon unintentionally without realizing that families may often not understand what we mean. Parents may be oblivious to some concepts that we as professionals may be familiar with and take for granted. How many times have you found yourself researching on “Google university” to get your questions answered after a doctor’s visit, only to find yourself being overwhelmed at the variety of opinions and research available?

 

It is our responsibility as clinicians to not only provide results to our families, but also to make them as relevant as possible. Based on a review paper on recommendations for autism assessment feedback within clinical practice guidelines (Pattison, et. al 2021), clinicians need to be not only accurate in their terminology, but also use clear language at a level that a layperson can understand. Clinicians need to be direct in their feedback, while ensuring that they are conveying hope and optimism. A strength-based approach to feedback is highly recommended. Provide specific examples of the child’s strengths to reinforce that their child has a unique set of strengths and challenges. Providing a feedback session that addresses all areas of functioning rather than just autism symptomatology, is helpful not only in developing individualized interventions, but also it helps parents look at over-arching goals to promote their children’s growth in the long-term (Ure et al., 2018). Finally, parents appreciate additional resources in the form of handouts, links, books, videos to help them firm up their understanding of what we have talked about.   

 

5. Be culturally aware. Culture can be defined as patterns of behavior and beliefs of a particular social, ethnic, or age group that can be passed down from one generation to another within the social group. As a clinician, it is crucial for us to not only be aware of parents’ perceptions of their child’s diagnosis from a cultural perspective, but also understand the effect of our cultural biases and attitudes as clinicians, as we interact with the family.

 

Cultural framework: First of all, when working with children from diverse backgrounds, we may need to think about each family’s specific understanding of a developmental delay/Autism. Get to know what parents consider “normal” in their worldview. Once, we know that we will be able to apply different strategies to engage parents in acceptance/adjustment to the diagnosis. Also, the clinician may need to think about how their view of disability differs/is similar to that of the parents and how those similarities and differences can affect their interactions.

 

Terminology: During feedback, it is helpful to use the same terminology that parents are using to help them understand how their child’s behaviors fit into the symptom pattern.  For example, while some families seem to be concerned about their child not being able to respond to their name, other families may report different terminology for that same behavior (e.g., my child does not focus/pay attention/follow directions when we talk to him, etc.).

 

Stigma: The stigma that is attached to having a child with a disability can affect the family’s experience of receiving a diagnosis. Studies have shown that some non-Western societies’ views regarding causes of disability may be linked to stigma associated with receiving the diagnosis. While in the western culture, notions about causes of ASD are rooted in biomedical theories, in the South east Asian cultures, they seem to be rooted in Karma or fate/destiny, thereby, causing families to feel shame and guilt. As a result, parents may feel responsible and may channel their energies towards their child’s interventions treating that as their sole “duty,” while overlooking the exhaustion and stress that it can put them through.

 

Support system: Gender roles within each culture and family unit may be defined differently and we as clinicians may need to gauge that/enquire about that. This may help clinicians suggest strategies that fit within those gender roles and responsibilities, while helping parents think of ways to prevent burn-out and encourage collaboration with the community, while caring for their child with ASD.

 

Strategies: Although there is not much research in this area, based on my clinical experience the following strategies have been helpful:

a. Be curious and enquire about/gauge how parents’ cultural models shape their parenting role, especially when they now have a child with disabilities.

b. Use reflective listening. Reflective listening is attempting to understand what the speaker is saying, and then saying it back to the speaker as you understand it. Some phrases that may be used here are: “I hear you say...” “ I sense…” “Help me understand…”

 

c. Providing education about the disorder and variations in the developmental trajectory for children with ASD helps parents overcome the stigma attached to having a child with a disability.

 

d. Provide information about local resources for family support, educational programs, therapies and interventions.

6. Self-reflection: According to the APA’s code of ethics (2002), Principle A: Beneficence and Nonmaleficence, “Psychologists strive to be aware of the possible effect of their own physical and mental health on their ability to help those with whom they work.” Self-reflection involves “meta-cognitive” skills of reflecting on one’s own mental processes. It helps to turn our focus inward and be curious about our own mental processes. This reflective practice helps us think critically about our work and allows us to be effective clinicians. Some important pieces to think about as we wrap up our evaluations:

a.    What worked?

b.    Why did we make certain clinical decisions?

c.     What were the challenges we faced in the session?

d.    What were the limitations?

e.    Is there anything that could have been done differently?

f.      Do I need to change my clinical practice in the light of this self-reflection?

 

One of the ways we can incorporate self-reflective practice very regularly is when we write progress notes for our feedback sessions. Some clinicians follow a more structured approach like completing a checklist after the feedback to ensure all aspects were touched on. One other way to process our thoughts is to attend peer consultations during which we can discuss challenging sessions/situations with colleagues and get feedback. 

 

Finally, remember to use self-reflection as a tool to help you grow as a clinician and bring positivity and joy in the work that you do.

References:

  1. American Psychological Association. (2017). Ethical principles of psychologists and code of conduct (2002, Amended June 1, 2010 and January 1, 2017). Retrieved from http://www.apa.org/ethics/code/index.aspx.

  2. Bernier, R., Mao, A., & Yen, J. (2010). Psychopathology, families, and culture: autism. Child and adolescent psychiatric clinics of North America, 19(4), 855–867. https://doi.org/10.1016/j.chc.2010.07.005

  3. Carlsson E, Miniscalco C, Kadesjö B, and Laakso K. (2016) Negotiating knowledge: Parents’ experience of the neuropsychiatric diagnostic process for children with autism. International Journal of Language & Communication Disorders;51;328–338.

  4. Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162.

  5. Harrington, J. W., Patrick, P. A., Edwards, K. S., & Brand, D. A. (2006). Parental beliefs about autism: implications for the treating physician. Autism : the international journal of research and practice, 10(5), 452–462. https://doi.org/10.1177/1362361306066609

  6. Hasnat MJ and Graves P. (2000). Disclosure of developmental disability: a study of parent satisfaction and the determinants of satisfaction. Journal of Pediatric Child Health. 36(1):32-5.

  7. Howlin, P, Moore, A (1997) Diagnosis in autism: a survey of over 1200 patients in the UK. Autism 1(2): 135–162.

  8. Luong J, Yoder MK, and Canham D. (2009). Southeast Asian parents raising a child with autism: a qualitative investigation of coping styles. Journal of School Nursing, 25:222.

  9. Pattison, E., Ure, A., Mittiga, S. R., Williams, K., & Freeman, N. C. (2021). The Feedback Session of an Autism Assessment: A Scoping Review of Clinical Practice Guideline Recommendations. Journal of autism and developmental disorders, 1–20. Advance online publication. https://doi.org/10.1007/s10803-021-05067-9.

  10. Quine, L. and Pahl, J. (1986). First diagnosis of severe mental handicap: Characteristics of unsatisfactory encounters between doctors and parents. Social Science & Medicine, 22(1), 53-62

  11. Sharp, M. C., Strauss, R. P., & Lorch, S. C. (1992). Communicating medical bad news: parents' experiences and preferences. The Journal of pediatrics, 121(4), 539–546. https://doi.org/10.1016/s0022-3476(05)81141-2.

12.Ure, A., Rose V., Bernies, C. and Wiliams, K. (2018) Autism: One or many spectrums? Special Issue: Developmental and Behavioural Paediatrics. 54(10),1068-1072.

  1. Webb, SJ, Jones, EJH, and Kelly, J. (2014) The motivation for very early intervention for infants at high risk for autism spectrum disorders. International Journal of Speech and Language Pathology 16(1): 36–42.

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Written by:

Shital Gaitonde, PhD

Licensed psychologist, GA

Kinder Minds Behavioral Health, LLC

drshital@drshitalgaitonde.com