Taming the Shame of Neurodiversity

by Courtney Edman | Family, Motherhood, Wellness

People who are neurodiverse are at high risk for anxiety, depression and suicide.

I have written this newsletter in part to help you and others understand the prevalence and impact that unmet expectations and shame have for neurodiverse people, their parents and family members. I have experienced and seen firsthand the impact of using the wrong approach with a neurodiverse child and teen, and I have also experienced and seen the positive impact and turnaround that is possible when the right approach is used.

Thank you for reading this important information and sharing it widely with others. You never know who may need this information and whose life you may save by taking the time to read it and share it with others.

I don’t know about you but when I think about the majority of interactions I had with my son when he was in middle and high school, so many of them were questions of him related to things that were important, but typically they were things for which he had absolutely no personal interest or motivation: homework, brushing his teeth, family get-togethers, going to school, going to church, going to certain after school activities, etc.

In effect, many of my interactions with him involved questions about things that were not priorities for him and required him to transition away from or think about transitioning away from the things he preferred to be doing. To be sure, I did share time with him doing things that he enjoyed and ensured that he had plenty of downtime to do what he enjoyed, but as you know, when raising children, working, and running a household, there are many things that need attending and unfortunately, I didn’t think that in middle or high school my otherwise highly capable son needed a lot of 1:1 attention or hand holding to do typical tasks expected of him like homework, hygiene, cleaning his room, chores, or transitioning from home to regularly scheduled activities. I was wrong.

While my intentions in communicating with him were good (after all homework, hygiene, family, and chores are important for a middle and high schooler to do, right?), and these types of questions and interactions worked well with my other neurotypical children, they seemed to always be riddled with turmoil for him and for me.

If I had to guess (since hindsight is 20/20), he was simply not emotionally ready or capable of partnering with me, and I wasn’t using the right approach to tap into his willingness to partner with me. Even up until middle school, his teachers and I had used the traditional and well-known operant conditioning approach made known by B.F Skinner in which incentives, rewards, and consequences/punishments are used to modify behavior. Neither I nor any of the professionals I sought help from (social workers, teachers, or doctors) provided me with any other way of modifying his behavior and supporting him.

Unfortunately and unbeknownst to me and to them, we were all setting him (and me) up for disappointment and even more long-term emotional turmoil.

What I know now and what I hope you learn and are able to avoid, is that a hallmark of neurodiverse kids such as those with executive function challenges, ADHD, autism, etc, is that their behavior does not change with the typical parenting approaches of rewards and punishments. The only thing that results from continuing to use this approach is

  • continued unmet expectations,
  • disappointment,
  • difficulties in the relationship,
  • a potentially a high level of anxiety,
  • depression
  • shame,
  • and lying.

In fact, if you child is lying frequently about things they have done, it may be a symptom of their inability to do things they no they are supposed to do.

My son once shared with me that it was easier for him to lie about not having done something than to admit to himself the truth that he had once again not met the expectation that he knew he was supposed to have met. That insight which he shared with me was something I will continue to be grateful for, and which I know took incredible strength, courage, vulnerability and trust for him to admit.

The tendency of neurodiverse people to lie and the high frequency of shame that they experience are well documented.

Both characteristics are related to the fact that they repeatedly fail to meet the expectations of themselves and of others: family, teachers, employers, coaches, peers, etc. Over time, these failures take a toll on their sense of self and result in internalized blame and the belief that they themselves are a failure, aka shame.

We can avoid this, but it will take a shift in our willingness to understand and accept that people with mental health, social and learning disorders, and other invisible brain-based disorders such as ADHD, autism, dyslexia, and anxiety are not intentionally avoiding responsibility or intentionally irritating us or intentionally misbehaving.

They have brain-based differences that result in the behaviors that we see (remember Mona Delahooke’s Developmental Iceberg?). It is these brain-based differences that impact their ability to meet expectations, not their willful disrespect.

Unfortunately, there is no medication or magic overnight, easy solution that will change the way their brain is wired or their lagging skills. It requires consistent support, patience, skill-building, learning, and accountability to effect change. Just like it takes time for someone to learn to read, to do math, or to become good at a sport, it takes a similar approach to help those who are neurodiverse learn executive function skills and other skills impacted by their complex learning and social-emotional profile.

We can do this. We need to make this shift. The mental health and success of neurodiverse people depends on it. By making the shift, we as a society will also benefit from the tremendous gifts that each of these individuals has to share with the world: creativity, thinking outside-of-the-box, music, science, writing, art, policy, technology, and so much more.

So, how can we avoid this outcome? Adopt a different approach.

  • Remember that kids do well if they can.
  • Be Patient with their process. IQ and executive functions have nothing to do with one another. Just because a child is incredibly smart does not mean that they have strong executive function skills, and building executive function skills takes time and practice (just like learning to play the guitar or learning to speak a language or learning to play a sport; it takes time, repetition, encouragement, and coaching).
  • Presume positive intent. Get curious about why someone isn’t responding to the rewards or consequences approach. Most people would want a reward so there must be something else getting in the way of success.
  • Consider a brain-based disability or diagnosis and seek help from a professional who understands neurodiversity. And then, provide education to them about how their brain works and why they have the challenges that they have. Put a team together that meets the needs of their brain-based challenges;
  • Find ways to connect with them (in ways that are meaningful to them and come easily to them), so that you and they can have fun together, build trust, self-awareness, and the ability to ask for help and be honest, and ultimately,
  • Provide opportunities for them to experience success and build the confidence they need to endure the challenges and pursue their strengths.

Our world is not yet fully welcoming or understanding of invisible disabilities and neurodiversity. We are, however, gaining traction and there are many resources, services, programs, and supports available to neurodiverse people in addition to medication, therapy, and coaching: summer camps, gap year options, supports in college, internships, and workplace support.

I certainly wish I could turn back time and get a redo with my son, but the good news is that when I learned all of this and changed my way of interacting with him, his defensive armor and shame, over time, have seemingly disappeared.

He is now beginning to live into his strengths, accept his unique and differently wired brain, and have the confidence to pursue his path in the world. Plus, I can also ask him questions that I asked him when he was younger without the turmoil that we endured before.

It hasn’t been an easy journey but the process works. It requires a LOT of patience, putting the relationship first, building strengths and confidence, being compassionately curious, putting together a team of support and becoming partners in problem solving.

Shame is a powerful emotion that can not only be an obstacle to success and thriving but is also incredibly damaging to a person’s self-worth and belonging in this world.

Together we can create change and tame the shame experienced by our kids, by parents, and by adults impacted by neurodiversity. What will you do differently to help fight the stigma of neurodiversity? Is your child or are you as a parent impacted by shame related to neurodiversity?

Please know you are not alone and there is a way forward and help available. I’ve been there and can help you and your child. There are also numerous resources available that I will continue to share with you or can provide to you sooner if you ask. There is a different way to create the change needed and that your child wants, and the patience and effort required is most certainly worth it!

Yours in the Journey of Taming the Shame of Neurodiversity,

Courtney

Would meeting with Coach Courtney and other parents of neurodivergent kids provide the support that you need to tame the shame? If so, take a look at 2TTS Parenting where you can meet other parents and share stories, resources, and be reminded that you are not alone in your journey! Sign up for my 2TTS Parenting Community or schedule a FREE CALL with me HERE I would love to help you and your child thrive and share their gifts with the world!

Courtney Edman
Founder and President at 2tametheshamE, Inc.

Courtney is passionate about empowering people to pursue their dreams and build the life they want, no matter the obstacles. Courtney masterfully blends her personal background with a professional passion for coaching students, parents, and adults and is committed to making a difference in the lives of others who face challenges, uncertainties, and obstacles that are related to physical, mental, neurobiological, and/or neurochemical factors. Courtney earned her Bachelor’s degree from Washington and Lee University and a Master’s of Science in Physical Therapy at Virginia Commonwealth University. She is a licensed physical therapist who specialized in Early Intervention (birth to three-year-olds) as well as treating patients with chronic, life-shortening pulmonary disease. In 2020 she chose to bring her skills, knowledge, experience, and expertise gleaned from over 20 years as a parent, physical therapist, executive director, and lifelong learner to a new career, coaching people with complex learning profiles and their parents. In 2022 Courtney decided to pursue this mission by launching her own company, 2tametheshamE, Inc. where she not only coaches but also works to educate, inform, and advocate for the needs of neurodivergent individuals. Courtney also serves on the advisory boards of the Chris Walsh Center for Families and Educators at Framingham State University, the Inattentive ADHD Coalition, and the MA DESE Special Education Panel. She is a trained SENG Model Parent Group Facilitator and a graduate of the PCTI of the MA FCSN as well as a member of MAGE, CHADD, AAPCA, and SENG.

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