Autism (or ASD - Autism Spectrum Disorder) is a condition that affects people from all walks of life. Yet, the stories of adults who are diagnosed with it often go untold.
Meet Ari (they/them), a remarkable person whose journey with autism has been a testament to the diverse and often misunderstood "spectrum" of this neurodevelopmental condition. I was excited to talk with them because not only was this something I didn't know very much about and saw it as an opportunity to learn, but also because I love how the Soul Spheres tie into the healing journey of finding your Self through diagnosis.
In this blog post, we delve into the intricate world of adults living with symptoms of ASD, exploring various signs of this disorder in adults, challenges, and the transformative power of diagnosis. Ari's narrative serves as a guiding light, shedding insight into the unique experiences that often go unnoticed.
Understanding ASD
Knowing the definition of ASD is a good starting point for understanding how it affects the lives of those who have it. As Ari shares, "The brief definition of autism is a developmental disorder that impairs the ability to communicate and interact. It impacts the nervous system, and the severity ranges quite drastically from person to person with difficulty with social communication, social interactions, obsessive interests, [and] repetitive behaviors. 1 in 36 children are thought to have autism, but there are not many consistent stats on adults with autism."
Drawing from Ari's experiences, we can illustrate the subtleties that may evade common perception. In my interview with them, Ari expressed that adult autism isn't a one-size-fits-all condition, and the behaviors of people with ASD behaviors might not match certain stereotypes, but they are nonetheless valid expressions of neurodiversity.
Common Signs of Autism in Adults
Societal and cultural factors influence the challenges of recognizing behavioral patterns of those with autism in adults. Barriers to diagnosis prevent many adults from receiving timely support. Still, there is hope and empowerment in the journey towards diagnosis.
Here are some common signs of autism in adults that are often overlooked or misunderstood:
- Difficulty with social interactions: Adults with autism may have communication difficulties and struggle to understand social cues or sarcasm, have difficulty maintaining eye contact, and find it challenging to initiate and sustain conversations.
- Sensory sensitivities: Many autistic people have heightened sensitivity to certain sounds, lights, textures, or tastes, which can be overwhelming and lead to anxiety or discomfort.
- Narrow interests and intense focus: Autistic individuals often develop specific interests and hobbies that they deeply immerse themselves in, sometimes to the exclusion of other activities.
- Difficulty with change and transition: Adults with autism may struggle to adapt to changes in routine or unexpected situations. They may rely heavily on structure and predictability.
- Stimming: Ari explains this as a repetitive behaviour used to self-soothe. "It's like calming the emotions or letting the emotions out in a physical way. It can be scripting which is like the memorization of a word, a sentence, a phrase, and just repeating it over and over and over again. There's happy hands, which I do a lot, rocking back and forth - things like that."
What role does gender play in an Autism Diagnosis?
According to PsychCentral, males are diagnosed more commonly than females at a staggering 4:1 ratio in diagnosis! That means that as an AFAB (Assigned Female at Birth) person, it's not a surprise that Ari wasn't diagnosed in their adolescence.
Masking In Women & AFAB People
One of the reasons that are suggested for this gap in diagnosis is that females are more likely to mask the autism symptoms.
Ari emphasizes, "I think my understanding of masking is [where] you learn how to appear as if you're doing it a certain way, even though it's not coming to you naturally." She continues, "With masking in mind, it's also very important to note that autistic females or autistic AFAB people actually get assaulted more than neurotypical women because we don't understand these social cues."
The Gifts and Challenges with ASD
As it always is with life, there's duality in everything. Autism certainly comes with its challenges, but there are also unique benefits to being someone "on the spectrum." One aspect in particular that stands out as something that can present itself as a true gift are special interests.
Ari explained in our conversation that calling it a "spectrum" can be a bit misleading and sometimes leads neurotypical people to identify as being a "little bit on the spectrum." However, this lessens the importance of a true diagnosis, and it is now more common for the symptoms to be shown on a wheel, as she illustrated above.
Unique Interests
Ari is particularly interested in animals, feminism, and autism. Having these things doesn't just mean they have a general understanding of these topics; it means they invest a lot of time and energy in deeply understanding these topics and enjoying discussing them more than the average neurotypical person might.
These special interests end up driving people in a deeply creative way that we have seen in some of our historical touchstone figures. Ari said of Einstein, "He didn't speak until he was five years old. He hated being touched, hated it. He had very poor social cues, very poor social interactions. He didn't like people very much. Things like that, but we didn't have the ability to diagnose him at that time because it wasn't really a thing. But there are so, so many people in history that have shaped our entire world, our entire path into the future that were autistic, like Einstein and Charles Darwin and Isaac Newton, Jane Austen, Leonardo da Vinci, Beethoven, Michelangelo, Nikola Tesla, Thomas Jefferson, Virginia Woolf, and Mozart. So you look at these people, and they're classified as geniuses. Like they're geniuses of their practice. They have changed the world in some way, arguably."
Sensory Issues & Meltdowns
As for the more challenging aspect of having Autism, what stresses Ari out may not be the typical stressors of neurotypical individuals.
They explain, "Transitions are also definitely a stressor, but not in the way of like, oh, like getting out of bed to go to work. That can be a stressor for sure, but for me it's more like from going, from being dry to getting in the shower and being wet. That is a big stressor for me, like just that change in body temperature. And autistic people do often have a poor ability to regulate their body temperature. So that in itself can make that situation a little bit harder."
On top of atypical sensory sensitivities, meltdowns can also be a normal part of everyday life for those with ASD.
"That I'm almost 21 years old, and I still have meltdowns because it's autism. But if I am in a mood and I get slightly off my routine, or I get slightly overstimulated, or something big happens, I am useless. Like I pull out my hair, I punch myself, I scream, I cry, I'm inconsolable. They're very, very bad. And a lot of most autistic people, I'd say, struggle with meltdowns. And especially in early childhood, absolutely. And how those meltdowns are perceived in childhood can affect the grownup later on in life to an extreme degree."
The Journey Towards Adult Diagnosis
When people go undiagnosed through childhood, they are left to seek understanding as an adult. This journey symbolizes the unwavering determination and courage of autistic individuals, inspiring others to embrace their own paths toward ASD diagnosis and self-realization.
Conversations with a Professional
Clearly communicating specific concerns with a professional can be immensely beneficial in the process of recognizing and understanding the signs of autism in adults. By engaging in open and honest conversations, individuals can provide valuable insights into their experiences, allowing psychiatrists, therapists, or other clinicians to make a more accurate diagnosis and help through medication or cognitive behavioral therapy (CBT).
Ari's journey towards diagnosis is a compelling narrative of perseverance and self-discovery. Key steps are involved in recognizing and seeking an autism diagnosis in adulthood, emphasizing the transformative power of self-awareness. "So I had a primary care doctor that I was seeing because I have Ehlers-Danlos syndrome and a bunch of other things. And she is actually the one who mentioned to me, like, 'Hey, are you autistic? Has anyone ever talked to you about that?' And I was like, 'no.' So I went home, and I did research, and I read all these articles and stuff. And I was like, oh my gosh, this sounds like me."
Dealing with the Emotional Impact of Diagnosis
Navigating the emotional impact of an autism diagnosis in adulthood involves acknowledging the personal and psychological effects it brings. It's about reflecting on emotional resilience and embracing self-acceptance post-diagnosis, leading to a transformative journey of emotional healing and self-discovery.
As Ari put it, "Learning that I was autistic affected my view of my childhood probably the most. It was a complete shift because my parents weren't great parents. There was a lot of gaslighting and manipulation involved in my childhood and overall not understanding the things that I needed as an autistic child. So they reacted in a way that would benefit a neurotypical child, and I was nothing like that - so I it helped me feel a lot less guilty for what they did to me and knowing that I wasn't the reason and that it wasn't something that I could control."
Living with Autism as an Adult
Follow these strategies to unfold the subtleties of social cues and body language in adult interactions, embracing the influence of non-verbal communication and facial expressions in relationships.
Support Groups and Their Role in Coping
Embracing the validation and support from online groups and vocational rehabilitation can foster a sense of community and belonging. Support groups create space for sharing experiences and addressing feelings of isolation in adulthood. They play a crucial role in nurturing personal growth and self-acceptance while also leveraging the support provided by family members and primary care doctors in the diagnostic assessment.
Managing Anxiety and Depression with Self-Care
Anxiety and depression are two of the most common comorbidities with ASD. Although Ari didn't find that meditation was a useful mechanism for dealing with this, studies have shown that it can be a very effective method for those with autism to battle both depression and anxiety. For Ari, however, their personal choice would look more like taking a long shower that can have a calming effect, even though the transitions in and out of the shower itself can cause anxiety, as she shared.
Ari explains, "For me, as an autistic person, it's just self-care looks a little different. It's harder to meditate because my brain goes a hundred miles per hour all of the time - I can't turn it off ever.... So for me self-care looks like taking a really long shower and getting out when I'm ready or getting in the shower when I'm ready or maybe focusing on a hyper fixation like focusing on a special interest can be self-care. Just doing things that serve me, like knowing when my social battery is drained and feeling comfortable enough to leave."
Conclusion
The story of Ari is a living example of how coexisting with autism as an adult comes with its own set of challenges. However, with a determination & commitment to being good to your Self such as Ari's, you're bound to strike a balance that ultimately works in your favor.
Ari reflects on being able to see first-hand the positive shifts in self-perception, understanding, and empowerment that can accompany a late-in-life diagnosis, reflecting, "It is a lot easier to listen to my needs and validate my needs."
