ASD and Neurodivergency – Navigating the Diagnosis and Stigma: Handling the emotional weight of a diagnosis and the judgment from a misinformed community

As an educator of almost 30 years, I have had a front row seat to how a neurodivergent diagnosis has been handled by families, teachers, and administrators, by the community, and most importantly by the very individuals sitting at ground zero.  I would love to say that everything I have seen has been a beautiful story perfectly navigated, setting up a step-by-step example of how to’s and don’t do’s that is easily imitated and replicated with sublime effect.  Unfortunately, this is not the case, but I do want to make a point that so many things have changed for the better in those decades, and many times there have been great successes and an abundant amount of celebrations despite the challenges that were navigated.  I have also been witness to some of the decisions and trajectories that led to different and sometimes difficult journeys that took a bit longer and were steeped in unnecessary strife and heartache.  

My goal is to provide some perspective and encouragement for those navigating this specific journey in real time or who are about to start with either an early or delayed diagnosis. So let me start with the first difficult challenge- the diagnosis.

Whether the prompt to look into a potential diagnosis came from a health care professional, a teacher, a neighbor or friend, a relative, or from a gut instinct that something just wasn’t right, we have all been wired to fear “diagnosis.’  When the word is used, it elicits thoughts of everything a diagnosis can be made for: illness, diseases, conditions, troubleshooting, injuries, etc. Let’s be honest that all of the above-mentioned types of diagnosis carry a negative connotation, which is why we retreat to that same fear.

Within the healthcare industry, diagnosis is a word that is used due to insurance, treatment, prognosis, and many other technical and administrative applications.  For our purposes, I want to point out that a diagnosis within neurodiversity helps rule out or specify the observed symptoms as an official cognitive difference.  In this way, a proper diagnosis helps the healthcare professionals, interventionists, family, and educational community know what the specific challenges might be in order that support and intervention can be used.  Different cognitive diagnoses can lead to very different types of supports, strategies, and interventions, but without a diagnosis, everyone is left guessing.  This brings me to my first point-

A diagnosis isn’t the end of a journey, but a beautiful beginning

On some occasions, as families first learned of their child’s diagnosis, the conference room would get heavy.  Emotions would run high as parents or guardians grappled with, “Will my child be normal? What does this mean? We aren’t prepared for this. Maybe the diagnosis is wrong. How did this happen? What will their future look like?”  Other parents, just as concerned, would ask, “What do we do with this information? Are there things we can do to help? How can we get them the help they need?  I want to point out that all of these responses are valid, but to encourage every parent or guardian who has lived through this, let me assure you that a neurodivergent diagnosis is not a terminal illness.  I am here to assure you that a diagnosis shouldn’t be treated as the end, but as a beautiful start.  Why beautiful?  Because now we know what we didn’t know.  And by “we,” I don’t just mean the immediate family, but all of those individuals who will be a part of supporting the child.  Now we have game plans based upon other individuals who have received the same diagnosis.  Now we can embrace, discover, and navigate the best course of action with peace of mind and loving support.  

For some families, the resistance to accepting a diagnosis is grounded in fear and stigma.  Societies’ pre-conceived notions about cognitive differences, and children or adults that have them, have promoted ill-suited stereotypes, error-filled notions about intellectual abilities, and inaccurate predictions of future possibilities or potential.  And I will tell you honestly, if you do not accept a diagnosis and do not use that knowledge to set a course, all of those things, sadly, could very well come true and not simply be a perceived stigma.

While a diagnosis brings with it many unknowns and a plethora of emotions, it can also be a grounding event for the journey that lies ahead.  This brings me to my second point I want to emphasize which is:

This is not a journey you have to embark on alone

In the last few decades, great progress has been made in understanding neurodivergence, including ASD, ADHD, dyslexia, and other cognitive learning differences.  There is a growing abundance of books, research, professional coaches and consultants, specialized therapists and neuropsychologists, specialized schools, transition programs, and an ever-expanding number of individuals with a personal connection either as a person with a neurodivergent diagnosis or as a caregiver for an individual with neurodivergence.  

And while the neurodivergent landscape is quite diverse in strengths and challenges and is revealed in a snowflake dimension of uniqueness, there is plenty of crossover of experiences and applied techniques that become useful tools in the toolbox of many professionals and caregivers.  Not all that long ago, families ventured the path of special education in virtual isolation, but not so anymore.  The amount of available support and access is greater in the younger years, which is another benefit of early diagnosis, but the amount of specialized programs is growing for teenagers and young adults as well.

Families that don’t try to go it alone, but instead network with other families, professionals, and specialized programming opportunities, discover the most viable and suitable options, research the best fits, and take pathways that lead to the greatest success.  Which leads me to my next point:

Be on guard that your greatest strength doesn’t become your biggest obstacle

Over the years, I have seen so many families overcome the emotional pitfalls and denial phases after diagnosis, only to fall prey to their own protective instincts when helping their children.  I don’t know a parent I have worked with who enjoys watching their child struggle or stands by while they fail without wanting to help.  It speaks to our very nature as parents to want to smooth the pathways they travel and spare them from discomfort, but over the last couple of decades, this has become a struggle within primary and secondary education for even neurotypical children, known as helicopter or even lawn mower parenting.  In an effort to shelter our children from difficult experiences, we prevent them from developing critical thinking, social, emotional, and practical skills that are essential to independent living and will serve them for years to come.   

This altruistic passion to protect our children can be more magnified in the home of a neurodivergent child.  In our effort to provide support, we might find ourselves over-supporting and, instead, stunting the progress our student desperately needs.  One of my favorite quotes a mentor shared with me recently was, “When you enable, you disable.”  Our neurodivergent students need plenty of protection from the world around them, but they also need controlled exposure to help them learn and grow.  Research shows that our brains, all of our brains, learn more from failure than from success.  We clearly need our students to learn, and fail, and learn some more in an environment where they are safe, but not sequestered.  

In families who have challenged their students safely and have provided what Dr. Temple Grandin and Dr. Debra Moore called “The Loving Push,” I have seen immeasurable progress toward overcoming the things that challenge neurodivergent students the most.  This is not at all a call to throw them to the wolves and see if they survive, but we must first tamp down our natural desire to protect them at all costs and not expose them to experiences they can safely learn from by navigating them individually.

So with a diagnosis, identified supports to collaborate with, and a safe, but loving push to embark on new responsibilities, tasks, and life experiences, we still need to address the stigma, stereotypes, and misinformation that exists in a society that wants to understand, but is ignorant to the real and expanding cognitive research on neurodivergence.  My last point is:

Deflecting stigma and educating the community requires patience, preparation, and persistence 

Dr. Stephen Shore, a neurodivergent professor, advocate, and author, once said, “If you meet one person with autism, you’ve met one person with autism.”  This quote resonates with so many in the neurodivergent community because it helps others unfamiliar with neurodiversity understand the complexities and uniqueness of each and every person who carries that diagnosis.  No two neurodivergent people have the same distinguishing characteristics, indicators, tendencies, risks, physical or psychological norms, etc.  A person with a cognitive learning difference might appear completely different from a peer with the same diagnosis because they are so unique.  

This might be why the public finds it difficult to identify and interact with people on such a diverse scope.  The average person might tend to categorize every neurodivergent person they encounter based upon matching criteria, but suddenly becomes uncomfortable when presented with a diversity of presentation, emotion, social complexity, anxiety, etc.  Even after attempts were made in the past to see autism as a spectrum of diversity over a decade ago, some strides were made in the communities we live in to raise awareness, but even the term “spectrum” gave a one-dimensional continuum and perspective.  Many now see it less like a spectrum and more like a three-dimensional abstract due to how differentiated autism presents in different individuals.  

As a result of all of this difficulty defining and categorizing at the highest levels of the health care industry, it is easy to understand how little society actually knows about neurodivergence and where they are getting their information from.  

If stigma in our society has come from a lack of information and experience, then the people most equipped to inform and educate are the very people who find themselves in the spotlight most often- the families and support specialists.  I have seen many families over the years step out into the community, not afraid of that spotlight, but looking for opportunities to help the people around them, at the store, at the park, on vacation, or in their neighborhood, become more comfortable with “knowing and learning,” instead of “judging or fearing.”  In most cases, the opportunity didn’t present itself at the most convenient time, as their child might be navigating dysregulation or an anxiety-induced episode in public with all eyes on them, but over time, they learned that people genuinely were more interested than judgmental, and showed compassion once educated and informed.

Families began working on recognizing odd looks and staring, not as a form of disdain, but genuine confusion.  In response, instead of becoming defensive, they seized opportunities to reframe the moment with appropriate context and infuse some firsthand knowledge and experience into an unfamiliar experience for people around them.  But as they found the courage to shift into that gear in uncomfortable situations, they gained the confidence to speak up when the circumstances weren’t heightened and found conversation starters with people who simply appeared curious.  In some cases, when it is age-appropriate, families can help their child begin learning the process of telling others about their neurodivergency and begin helping them develop the skills to self-advocate to those around them.  

Families that have found success have stayed persistent with their efforts to educate the community around them and destigmatize one person at a time.

Some Final Thoughts

There is no one right way, or roadmap to best navigate the journey from diagnosis, to support, to dealing with stigma.  Every family is also going through their own unique set of circumstances and outside factors that become a part of that journey.  The most important part is to become a champion for your child as early and as often as you can and to find others, and there are many others, to come alongside you, work in like-minded unity, to help you find the best path and greatest growth potential for your child based upon their unique needs.

A special note about families experiencing a late diagnosis

While I would admit that an early diagnosis is the best-case scenario and supports the best success for interventions, a late diagnosis is still a diagnosis and allows the ability to take advantage of whatever supports are available as soon as possible.  With a diagnosis in hand and a passion to advocate for your child, you can become a powerful force in their progress.  Don’t lose hope, believing you have lost time.  Seek out the opportunities you can find based on the timeline you have in front of you.

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