Reflections from a Late-Diagnosed AuDHDer
by guest author Greg Boheler, MSOT, OTR/L on March 16, 2022
Allow me to begin by describing myself. I am an occupational therapist, disability justice activist, I love creating things, and most important, I am (multiply) neurodivergent (ND). However, I was ignorant of my disability for most of my life. Late diagnosis is common, especially among Autistic individuals. Irrespective of when diagnosis occurs, all disabled people must navigate a word not designed to accommodate their unique way of being and doing. This constant negotiation between the person and their environment epitomizes the social model of disability.
I would not change my life’s journey, but I sometimes wonder how different my life may have been if I had been aware of my disability during my youth. I am particularly intrigued by two themes…
First, how would I have navigated life if I knew about my disabilities during my youth? For example, would I have framed challenges in the same manner? Would I have used my strengths differently? How would my day-to-day participation in a world not designed for me look different?
Secondly, how would I have developed and expressed my identity as a neurodivergent individual, had I known I am an Autistic ADHD-er (also known as an AuDHDer)?
Question 1: Navigating Life
If I could go back and tell myself one thing, it would be, “you experience the world differently, and that is okay.” Differences are benign, or at least they should be. Disability represents nothing more than a natural variation in humanity… a diverse, yet equally valid way of doing, being, and interacting. It is vital that we instill an understanding of diversity in our youth, regardless of disability. This conception of diversity must be nuanced, encompassing all aspects of intersectionality, including (but not limited to) race, sexual orientation, gender, disability, and socioeconomic status. Knowledge is the precursor to acceptance. Therefore, we must create accessible spaces for growth and learning to drive understanding of diversity. Our differences are what make us unique, AND we are all connected despite those differences.
Now, for my experience… I love my mind; it is my greatest asset, it is beautifully imperfect, and it is autistic! However, before the age of 10 or 11, I was largely oblivious of the fact that my mind simply works differently. That is not to say I did not experience moments of not fitting in, or that I never became dysregulated. Rather, I did not understand that these experiences were any different from my peers. For Autistics with less conspicuous support needs, autism is often missed during early elementary education. I was tested in 1st grade, but my autistic traits were dismissed on the basis of an IQ test and my “lack of a learning disability.” Fortunately, our understanding of the autism spectrum has evolved since the 1990’s, but individuals still fall through the cracks. Research indicates that autistic traits become increasingly more apparent beginning in adolescence when social success becomes more essential.
Navigating the social realm
I’ve always struggled to understand unspoken social conventions, and because I was undiagnosed, I did not receive any formal support in this area. On one hand, as a child I had a certain immunity to what others thought. This enabled me to blindly pursue my interests and exercise my “weird” side. Looking back, my ignorance of prevailing social norms, my supportive home environment, and the belief that everyone’s mind worked like mine encouraged me to create a childhood which I treasure. My days were spent outside engaging in imaginative play as I explored the worlds inside my mind. However, this was counterbalanced by the reality that I remained confused by socialization, I became dysregulated by unmet needs, and I struggled to learn and engage in areas outside my interests.
In middle school, socialization became more crucial. This opened the door to isolation, victimization, and an abundance of internal conflict. As my awareness of my differences grew, I tried to compensate, inadvertently losing my authentic self in the process. I developed masking, which is a tool Autistic people use to blend in socially. While from a neurotypical perspective masking can seem to help Autistic people “fit it,” it comes at an enormous cost. Masking is exhausting, demanding a tremendous physical and cognitive toll. This effect is compounded for many neurodivergent individuals whose minds may already be internalizing and analyzing every scrap of information around them. Most importantly, masking denies one’s true identity. This suffocation of the authentic self can be both numbing and dysregulating, leading to dissociation, stress, and/or outbursts of emotion as the true self struggles to break free.
Unfortunately, these natural responses to stress are characterized as “problem behaviors;” something to be discouraged and corrected. I keenly remember instances where I perceived inequity and I had an unstoppable urge to speak up, removing the mask of social conformity to challenge an unjust system, practice, or person. My true self valued fairness over fitting in, and I resented/resonated with the feeling of being victimized for being different. These instances rarely ended well, further reinforcing conformity as the safe path.
Eventually, my hyper awareness of details and perpetually analytic mind allowed me to strive toward a balance between social aptitude and authenticity. Unfortunately, most social learning for Autistic children is driven by a deficit-based model, where individuals are explicitly taught socialization in non-naturalistic environments. The objective of these parochial interventions is to fix the individual to align with normative standards, rather than celebrate their differences and explore individual strengths or interests. Anything aberrant to the arbitrarily defined norm is viewed as a problem, oftentimes resulting in detrimental behavior management approaches.
Navigating access needs
Another key area I continue to navigate is my understanding of and advocacy for my access needs. Access needs, or support needs, represent changes to a situation or environment which enable people to equitably participate in a manner which reflects their autonomy and agency. Access needs are expansive; some of the areas I wish I had knowledge of growing up include my communication differences, sensory profile, and energy/capacity.
Every person on this planet has a unique sensory profile, constructed by different likes, dislikes, and the manner in which they process different stimuli. Among ND people, these differences may be exacerbated, resulting in strong reactions to different inputs and environments. I was unaware of my strong sensory differences until graduate school. Because of this, I was deprived of the opportunity to intentionally develop sensory strategies to avoid particular stimuli or to meet sensory needs. Consequently, my approach to sensory dysregulation was largely reactionary and did not always achieve the desired result. I did, however, begin to inadvertently build strategies which helped me navigate daily life.
For example, I took a strong liking towards headphones/earbuds in high school and typically used them in noisy environments. Also, I’ve always had a deep connection with nature, and when I began to feel uncomfortable (dysregulation) I would often seek the sensory stimuli of nature. I did not realize at the time that I was building coping strategies and meeting sensory needs. It is of the utmost importance that ND youth understand how their sensory system works, so they can develop skills to ensure their sensory needs are met.
Sensory needs are just one of numerous determinants of one’s capacity to access daily life. Other determinants include individual abilities, energy level, efficacy of supports, and the match between person and task or environment. Understanding of one’s access needs is absolutely essential for all disabled people. Furthermore, the way access needs are framed is just as important as the content. In a world which views accessibility as a burden, too often coming into understanding of access needs is tainted by ableism.
Fortunately, a new approach is beginning to emerge; one that values neurodiversity, identity exploration, and authenticity. Curricula which collaborates rather than instructs is essential for the provision of services and supports for ND children.
Take sensory education: The standard approach has been to discourage or withhold stimming, emphasize “correct” forms of sensory expression, and use sensory preferences in a contrived, almost prescriptive manner. A neurodiversity-informed approach is underpinned by judgment-free sensory education, highlighting exploration of sensory preferences, celebration of stimming, and development of individually meaningful coping strategies. I take comfort in the knowledge that as early diagnosis of autism increases, so does the presence of neurodiversity-affirming education.
Question 2: Embracing My Disabled Identity
Identity is not monolithic, it is flexible, changing, and looks different from situation to situation. Since my diagnosis, I have undergone extensive changes in my identity as I’ve begun rejecting ableist norms, shedding the non-authentic pieces of myself in an effort to embrace my identity as disabled.
For disabled people, disability colors every aspect of life. It’s up to the individual to choose which components of their disability resonate with who they are, this is an especially important process for ND people. The reason some people identify as a “person with autism,” and others claim “Autistic” comes down to this negotiation of identity.
Growing up unaware of my disability, I did not have the opportunity to begin integrating my differences into my identity in a positive manner. Instead of developing disability pride, I viewed my differences through the lens of others (when I was actually aware of others’ perception). This inevitably led to a great deal of dissonance between who I wanted to be, and who I felt I needed to be. I used masking, dismissed sensory differences, and existed in an unending ebb and flow between the relative safety of my home life and the dysregulation experienced out in the world.
My parents were my saving grace. Often, parents of Autistic people share autistic traits or otherwise went undiagnosed. My mom shares some of my traits, so she encouraged me to explore my differences. It was in these moments of freedom, the times when I let my mind and body run unhindered that I found myself. These flashes of authenticity sustained me. In recent years, I have begun to increasingly integrate the authentic moments into my daily life. This process has been difficult, liberating, and necessary. My experiences highlight the importance of carry over between community life and home life. Identity development is a lifelong process which is best cultivated in nurturing environments which are responsive to individual differences.
The cultivation of neurodiversity–affirming spaces is the essential next step. Disabled people need to be exposed to disability concepts and tools as early as possible. However, this work cannot wholly rest on the disabled. Non-disabled people must educate themselves and adopt cultural humility in regard to disability. Society must embrace vulnerability and authenticity to meet disabled people where they are. Only once we drop the charade of an idealized norm can we break down existing barriers and power dynamics which produce inequity.
Greg Boheler is a co-founder of OT’s for Neurodiversity. You can explore more of his writing here.
Greg and OT’s for Neurodiversity co-founder Jacklyn Googins have appeared on numerous podcasts, including Two Sides of the Spectrum, Occupied, and Dating with a Disability.
You can explore strengths-based, identify affirming learning materials for neurodivergent adolescents and adults on the OT’s for Neurodiversity Teachers Pay Teachers store.
