Tag

disclosure

Jan 10
22

ASD Diagnosis Disclosure with Children

By | NESCA Notes 2022

By Renée Marchant, Psy.D.
Pediatric Neuropsychologist

All brains are different. Thus, there is no “one way” to disclose a diagnosis of an Autism Spectrum Disorder (ASD) to a child. The when, where, and how of diagnosis disclosure depends on the child and family’s preferences, values, and experiences. In addition, families do not have to feel alone in this process. Many families find it helpful to consult with parent support groups and professionals (e.g., therapist, neuropsychologist, speech and language pathologist, in-home ABA provider) to collaborate and discuss how to best approach diagnosis disclosure based on an individual child’s needs.

In my experience, I have found that disclosing a diagnosis of ASD to a young child is helpful when a child’s support network is integrated and involved in the process. As a family therapist, I see diagnosis disclosure as a family process and a potential to create and develop a conversation for the child and family that does not focus on identification and labeling of deficits but rather a conversation that is focused on understanding how each individual in the family thinks, feels, regulates, and relates to the world. The narratives we tell ourselves influence our well-being, and it is thus very important that children and families have a narrative or story to help guide their personal understanding and meaning of an ASD diagnosis.

Following a neuropsychological evaluation, I often provide child and family feedbacks to children and their caregivers to discuss the diagnosis. These meetings are designed to be “therapeutic feedbacks.” Here are key components of my “therapeutic feedback” sessions for “making meaning” of the diagnosis of ASD which may be helpful for some parents and providers:

  1. Normalize that all family members have unique learning styles and brains. Encourage parents and siblings to share what they know about their own learning styles of strengths and challenges. For example, a caregiver might say, “All brains are different, and I can’t wait to learn about how your brain works, how your sister’s brain works, and how my brain works.”
  2. Create a story about how the child thinks, feels, regulates, and relates to the world. Assist your child in developing a strength-based individualized narrative or story of their diagnosis, a narrative which also validates and acknowledges challenges. This can help the child and family see and understand how strengths can be used to meet challenges. The diagnosis of ASD becomes secondary to the process of describing the child’s perspective and experience – or describing their learning style. This idea stems from narrative therapy – a therapeutic treatment which helps individuals and families “edit and re-author” the stories we tell about ourselves, others, and our environment to increase well-being. It is important to remember that all stories are unique to the child and depend on the child’s experience and learning style. Examples that children and families have developed include, understanding ASD as “superpower,” “awesome awe-sism,” “data brain,” “legomaster,” “detective,” and “Ms. Feel Big.”
  3. Recognize the child as the “expert” of their experience. Many children with ASD experience heightened feelings of “being misunderstood” which can produce stress and significant emotional difficulties. It is thus very important to connect with the child’s own point of view, language, play themes, and description of their experience. Therefore, think developmentally – use play, videos/movies, books, art, or a written/visual outline (e.g., one column of “superpower” strengths and one column of “superpower” challenges). Here is an example of a book, which has been used in therapeutic feedbacks for diagnosis disclosure for some children depending on the child’s learning profile and special interests.
  4. Externalize the challenges that children experience and identify themselves. Do this by separating “problems” from the child. For example, a child I was working with identified that their “superpower” (ASD) makes them “just do it,” which in diagnostic terms reflects “impulsivity.” The family and I talked about “just do it” to create a story in which the child had a “jumpy monkey” (this child loved monkeys). This “jumpy monkey” needed “help” from the child’s “superpower” to “stop and think,” which in clinical terms means developing the child’s “impulse control.” This is a good example of how a child and family identified an ASD strength that could be used to meet a challenge.
  5. Review and revisit the conversation. Keep the conversation open and accessible to the child in every-day life. Practice normalizing and discussing every family member’s story of strengths and challenges at dinnertime, in the car, and during therapies (speech therapy, occupational therapy, psychotherapy, etc.).

These therapeutic feedback tips are just some of many. For an additional list of tips, please visit the University of Washington Autism Center’s Dr. Sarah Woods’ “Tips for Talking to Your Child About Their Autism Diagnosis.”

 

About the Author:

Dr. Renée Marchant provides neuropsychological and psychological (projective) assessments for youth who present with a variety of complex, inter-related needs, with a particular emphasis on identifying co-occurring neurodevelopmental and psychiatric challenges. She specializes in the evaluation of developmental disabilities including autism spectrum disorder and social-emotional difficulties stemming from mood, anxiety, attachment and trauma-related diagnoses. She often assesses children who have “unique learning styles” that can underlie deficits in problem-solving, emotion regulation, social skills and self-esteem.

Dr. Marchant’s assessments prioritize the “whole picture,” particularly how systemic factors, such as culture, family life, school climate and broader systems impact diagnoses and treatment needs. She frequently observes children at school and participates in IEP meetings.

Dr. Marchant brings a wealth of clinical experience to her evaluations. In addition to her expertise in assessment, she has extensive experience providing evidence-based therapy to children in individual (TF-CBT, insight-oriented), group (DBT) and family (solution-focused, structural) modalities. Her school, home and treatment recommendations integrate practice-informed interventions that are tailored to the child’s unique needs.

Dr. Marchant received her B.A. from Boston College with a major in Clinical Psychology and her Psy.D. from William James College in Massachusetts. She completed her internship at the University of Utah’s Neuropsychiatric Institute and her postdoctoral fellowship at Cambridge Health Alliance, a Harvard Medical School teaching hospital, where she deepened her expertise in providing therapy and conducting assessments for children with neurodevelopmental disorders as well as youth who present with high-risk behaviors (e.g. psychosis, self-injury, aggression, suicidal ideation).

Dr. Marchant provides workshops and consultations to parents, school personnel and treatment professionals on ways to cultivate resilience and self-efficacy in the face of adversity, trauma, interpersonal violence and bullying. She is an expert on the interpretation of the Rorschach Inkblot Test and provides teaching and supervision on the usefulness of projective/performance-based measures in assessment. Dr. Marchant is also a member of the American Family Therapy Academy (AFTA) and continues to conduct research on the effectiveness of family therapy for high-risk, hospitalized patients.

 

To book an evaluation with Dr. Marchant or one of our many other expert neuropsychologists, complete NESCA’s online intake form.

 

Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton and Plainville, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.

 

Aug 26
1

How High School and College Differ for Students with Disabilities

By | NESCA Notes 2019

By: Dina DiGregorio Karlon, M.A.
Transition Specialist, NESCA

Today, more students with disabilities are opting to attend college. As students plan to pursue college, it’s important for them to understand the increased expectations in college in the areas of academics, independence and social environments. For example, while in high school, the responsibility to get the students the services needed to be successful fell on parents and teachers; however, college students must advocate for themselves in post-secondary education. Below are some important ways in which the college and high school settings differ for students with disabilities, as well as some suggested strategies to prepare them.

Applicable Laws – In high school, students with disabilities are covered under the Individuals with Disabilities Act (IDEA), which mandates a free, appropriate public education for students with a disability (3-22 years of age). Some students in high school are covered under Section 504. In college, schools must comply with the Americans with Disabilities Act (ADA) and Section 504 – both laws are based on civil rights and prevent discrimination for people with disabilities. In short, IDEA is about success; ADA is about access.

Required Documentation – In high school, the school district is responsible for providing an evaluation at no cost to the student; this documentation focuses on whether a student is eligible for services under specific disability categories. Colleges are not responsible for the documentation. Students must get an evaluation at their own expense (if documentation is not current). Most colleges will accept current testing (within three years). This documentation must provide information about how the disability impacts the student and demonstrate the need for accommodations. Colleges will list on their website the type of documentation needed.

Modifications vs. Accommodations – In high school, if necessary, classes and materials may be modified, and the school is responsible for those accommodations and modifications. Some modifications may include reduced assignments or readings, adjusted grading to weigh a student’s daily work equal to semester tests. However, in college, there are no modifications to assignments or the curriculum; there are only accommodations. School is no longer responsible for arranging accommodations; rather students must advocate and arrange accommodations  for themselves.

Self-disclosure and Self-advocacy – In high school, teachers and parents support the student’s needs, with teachers approaching students if they believe assistance is needed. In college, the student is primarily responsible for arranging accommodations and advocating for their own needs. This is a significant shift—not just for the student, but for the parents, too. Parents no longer have access to the student’s records. The high school cannot disclose to a college a student’s disability—only the student can choose to disclose.

Disclose or Not to Disclose…That is the Question – Choosing to disclose that a student has a disability to a college is a deeply personal decision. As discussed, it is up to the student to disclose. If the student decides to disclose a disability, they need to understand not only the name of the disability, but also be able to communicate and describe how the disability impacts them and their learning. This is critical in determining what types of accommodations will be written into their 504 plan. While in high school, the student should be honest and realistic about the types of accommodations actually used and which of those were helpful. Helping your child practice discussing their disability and how it impacts them is very useful in preparing them to meet with the Office of Disability to share their needs. If a student decides not to disclose, they will not receive accommodations. However, all colleges have some type of tutoring and/or writing center to help students improve their academic skills. If a student chooses not to disclose and does not do well, they can still meet with the Office of Disability at any time to look into a 504 plan. However, their 504 plan will not be retroactive for the semester. Instead, accommodations will start from the date of the plan.

What Can Parents Do?

Preparing your child with a disability is critical to helping them be successful. Specifically, they will need self-determination skills. Self-determination is the understanding of one’s strengths and limitations together with a belief in oneself as capable and effective. These skills enable a person to participate in goal-directed, self-regulated, independent behavior. A person with self-determination skills is more likely to be independent and successful in work and training. Some suggested activities to help build self-determination skills include: Teaching your child how to make phone calls to make appointments, write emails with a professional tone and speak directly to people in stores or restaurants. Parents may need to start with a script to help a child practice, then fade support so the child is speaking as independently as possible in various settings. Other activities include having your child plan and prepare a weekly family meal (including making the grocery list, shopping for items, etc.), playing financial literacy games and activities (http://www.practicalmoneyskills.com/play/the_payoff), or talking with your child about how to begin to interact more independently with healthcare providers.

As parents, it is important to know that as your children become more independent, such as going to college, while they are now holding onto the reins, they are likely to need your help with the steering.

While these differences may seem daunting, self-advocacy, executive functioning and independent living skills taught throughout an individual’s transition to adulthood (starting as early as possible) can help to ease the jump to post-secondary education and its accompanying expectations. If you would like to discuss this topic in greater detail as it relates to you/your student, please complete our online intake form and note that your inquiry is for Transition Services.

 

Resources:

Center on Community Living and Careers, Indiana Institute on Disability and Community, Indiana University

National Council on Disability 

Santa Clara University

Think College

Life After IEPs

Financial Education for Everyone: Practical Money Skills

 

 

About the Author: 

Dina DiGregorio Karlon, M.A., is a seasoned counselor who has worked as both a school counselor and vocational rehabilitation counselor, guiding and coaching students and adults through transitions toward independence in both college and the working world. With NESCA, she offers transition assessment services in Londonderry, New Hampshire as well as transition planning consultation and coaching to students and families throughout New England.

 

To book Transition Services at NESCA or an evaluation with one of our expert neuropsychologists, complete NESCA’s online intake form. To book Transition Services in N.H., ask for Dina Karlon. 

 

Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton and Plainville, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.