Disclosure: A Path to Understanding
When my “neurotypical” son was in kindergarten, he began to verbalize observations about how his sister, who lives with FAS (and is 15 months younger), was “different,” and how her odd and often frustrating behaviors—which is how he experienced them— were an intentional attempt to annoy and aggravate him. It was the first indication to me and my husband that our son was viewing his sister’s behavior as intentional and within her control. As a result, he was more frequently losing his patience with her and wanting to spend less time in her company.
As we started to see this dynamic unfold, I found myself a bit panicked, struggling with how to respond. Although my husband and I were well aware of our daughter’s brain differences and what this meant, we had not disclosed those differences to her older brother.
For all he knew, she was just like him, and therefore had control over her body and her actions, just as he did.
I also clearly remember, during this same time period, talking with my friend and mentor, Diane Malbin (founder of FASCETS and author of Trying Differently Rather Than Harder), about this emerging dynamic between my children, and my dilemma over how to respond. I recall saying to her, “They’ve had such a sweet sibling relationship, I don’t want to do anything to change that. I don’t want him to think his sister is different.”
Her response was so simple, and exactly what I needed to hear in order to clarify, for myself, what needed to be done.
“But doesn’t relationship come from understanding of the other? And if it does, how can your son fully understand your daughter if he doesn’t know this about her?”
I’ve repeated this nugget of wisdom from Diane many times over the years to other parents with whom I work that might be experiencing a similar dynamic with a child who has some type of neurobehavioral challenge, parents seeking ways to navigate this dynamic with others in and around their family, whether it be teachers, siblings, neighbors, coaches or extended family.
Relationship with another comes from a place of understanding. Without understanding, how can we achieve the relationship we hope for?
Noun - The action of making new or secret information known
Over the course of the last month, many parents I’ve worked with have been navigating the tricky and often stressful transition of a child returning to school. The questions of if and when to disclose their child’s brain differences have come up repeatedly, especially when their child might typically have a “honeymoon” period at the start of the school year (inevitably followed by a slow decline in ability to manage or cope as time goes on). There are always underlying fears that accompany the idea of their child being “exposed” in this way:
Will they be ostracized?
Will they be punished for their disability?
Will they be seen as using the disability as an excuse?
Will they be viewed differently?
When these hesitations inevitably arise, we then explore the answer to this question:
What are the chances of those things happening if we do not disclose and educate others in our child’s life?
Time and again, the answer is that the child has a much higher likelihood of being ostracized, punished, and viewed as “different” if there is missing information and no additional context to draw upon.
Because neurobehavioral conditions such as FASD, PANS/PANDAS, ADHD and many more are invisible disabilities with behavior symptoms, there is a high likelihood that a teacher (for example) may not realize the disability exists, and the ensuing behaviors are more likely to be seen as intentional. This also means that the possibility of— let alone the conversation about—accommodations, remains buried under judgement:
He did it on purpose.
She just does it for attention.
He is intentionally ruining everything.
If she wanted to do it, she could.
He’s trying to manipulate me.
It’s important to remember the role of perception when it comes to challenging behavior:
Behaviors as intentional = punishment
Behaviors as symptoms = support
I once met with a mother who had a teenage daughter living with FASD. This mother was educated on what it meant to “parent differently” and had worked tirelessly to understand and relate to her daughter through a neurobehavioral lens. She had managed to support her daughter through school as best she could without ever disclosing to teachers or to her daughter the nature of her daughter’s diagnosis.
Her daughter experienced some significant struggles over the years, socially and academically, but, as her mother described it, had been able to progress through the school years up until that point “fairly unscathed.” At the time I met the mother, her daughter was a sophomore in high school. Friends were beginning to discuss life after high school and the process of applying to colleges during the upcoming junior year. The mother worried that her daughter was not “college material” based on her academic achievements to that point, which were well below where she should have been as a high school sophomore. Her daughter also recognized this, independently, and was devastated by the realization.
She knew she was working just as hard as her classmates. She had put in extra hours with study hall and tutors. Why wasn’t she capable of getting good grades?
This idea of relationship emerging most authentically from understanding is also true when we're talking about self-understanding. If our child is missing essential information about how their brain works differently, they have no context to draw upon in answer to the question of why they cannot do things as easily as siblings or peers. Without this key information about themselves, they are left to arrive at their own conclusions:
I must be stupid. I'm dumb. I am worthless. I'm a loser. I am not capable of doing anything right.
They come to believe they ARE a problem, instead of understanding that they HAVE a problem.
When working through the if’s, why’s, and when’s of disclosing to others about a child’s diagnosis and disability, I encourage parents to consider a few questions.
What is the fear underlying the decision to avoid disclosure?
Are there potential ways in which our child will be misunderstood if we allow that fear to prevent us from sharing more information with others about their disability?
In what ways could this play out?
When is the best time to disclose to a sibling, teacher, coach, or other important person in our child’s life (including the child his/herself)?
I always suggest that the best time is when there has been intentional space set aside to have the conversation. It’s an important conversation, one that deserves adequate space, time, and undivided attention to process and explore what this means to the person and their relationship with our child. The best time is also, if possible, before secondary behaviors start to present challenges in the relationship or environment. Prevention is always preferable to acting after problems present.
Some things to consider when planning this conversation:
What concrete examples do you have to illustrate what living with a brain-based condition means to your child? Take it from the abstract and general to the specific and concrete. Have examples of how each challenge plays out in their everyday life.
What are some ways this individual can support and accommodate your child? Have some ideas ready to share, and leave the option open for them to also make suggestions.
And be sure to share the good things, too. Often when we are parenting a child who struggles with seemingly simple, everyday tasks, we become focused on the challenges and forget to share all their wonderful strengths.
He is such a good listener, he just listens slowly.
She really wants to please.
He has a great sense of humor.
She is a sensitive and thoughtful friend, she just needs more coaching and support in how to be a friend.
Many of the neurobehavioral conditions can be diagnosis accompanied by stigma and shame for many people, not unlike a mental health diagnosis. The reasons behind disclosure apprehension— related to this and many other issues— run extraordinarily deep. But with education on the nature of the condition (that it is an invisible physical disability) and its implications for the way individuals with these conditions experience the world, I believe people and communities can shift their thinking to join us in supporting our children wherever they might be.
Our son, now in fifth grade, recently completed a class project where the assignment was to describe himself five different ways. One of the things he wrote down was, “I understand brain differences.” This is absolutely true, and because of this, he understands his sister who lives with FAS in ways that few people do.
Their relationship is loving, caring, and stronger because of it.
Interested in learning more about how to identify the brain tasks your child has difficulty with or about the work Eileen does with parents and parenting with a neurobehavioral approach? Visit eileendevine.com and reach out to her directly. She’d love to hear from you.
Eileen Devine, LCSW is a parent coach and consultant for families all over the world impacted by neurobehavioral conditions. She is also the founder of The Resilience Room, a close-knit membership community for parents of kids with neurobehavioral challenges. She lives with her husband and two amazing kids, one of whom happens to live with FAS. For more information, visit eileendevine.com.