A Story of Undiagnosed Autism and the Effects on Mental Health

Authors: Jake Arcement & Liv Mace

Our recent discussion follows a TEDx talk given by Carrie Beckwith-Fellows, who describes her personal experience with the struggle to receive an autism diagnosis. The talk explores her journey towards discovering her identity, but first, she explores the question of what autism is and is not.  

Elucidating the Autism Spectrum 
A widely held public misconception about the spectrum of autism is that it is a straight line, ranging from mild to severe. Instead, Beckwith-Fellows describes the spectrum as more of a “kaleidoscope” or color wheel (see image below), consisting of several traits that autistic people identify with. This includes repetitive behaviors, sensory issues, social communication, stimming, and executive function. 

Another misconception that she points out is the meaning of “high-functioning” and “low-functioning” autism. These terms are often misused to describe an autistic person’s speaking abilities, when they actually refer to an individual’s IQ (above or below 70). This misunderstanding has often minimized Beckwith-Fellows’s experience with autism, as she has excellent speaking abilities yet struggles to cope with the intensity of her emotions.  

What autism is for Beckwith-Fellows is anxiety, intense emotions, and trying everything she can to assert control over her environment. She is unable to put a name to her emotions despite the intensity with which she feels them. To cope with her anxiety, she asserts strict control over her daily routine, which, if interrupted, will leave her overwhelmed and paralyzed with anxiety.  

Masking and Its Mental Health Consequences 
Despite the severity of her symptoms, Beckwith-Fellows was not diagnosed until she was 35 years old. This is primarily due to her proficiency in masking, the unconscious effort autistic people make to hide their traits to fit social expectations. Social constructs are taught to children from a young age, and for Beckwith-Fellows, this meant learning to copy the behavior of others and hiding her stimming. Despite stimming being such an important form of self-regulation and emotional expression for autistic people, it is discouraged and viewed as socially unacceptable. Autistic children are inadvertently taught to hide their autism, but this is exhausting and can damage their sense of identity, potentially leading to serious mental health consequences.  

Beckwith-Fellows developed an eating disorder and intense suicidal ideation, moving between different inpatient facilities and taking various prescribed medications that did not work. Masking, which Beckwith-Fellows describes as an unconscious behavior she can’t “switch off”, hid her diagnosis from clinicians for over a decade.  

Finding Her Voice and Building Community
After withdrawing from the mental health system and seeking an autism evaluation, Beckwith-Fellows was able to confirm her suspicion and embrace her autistic identity. She now shares her unique voice through her blog and website, offering support to other adults diagnosed later in life. 

Battling Biases and Offering Connection
Beckwith-Fellows’s story is an important reminder of the biases we have surrounding autism, and that these affect even our clinicians. Misconceptions about gender and level of functioning in autism not only delay life-changing diagnoses but further mask the identity of autistic people.  
 
The comment section of the video highlights the importance of sharing stories like this, especially using the internet/social media as a platform for connection. Many comments from people, particularly women, who were also diagnosed with autism later in life expressed similar experiences with the same struggles as Beckwith-Fellows. With isolation being a strong contributing factor to suicidal ideation and self-harm, bridging these gaps in communication can be lifesaving. 

Shifting From the Medical to the Social Model 
The last key piece of our discussion involved the medical vs. social model of disability. In the context of autism, the medical model views autism as a disorder or deficit, focusing on reducing autistic behaviors to better fit into a neurotypical world. On the other hand, the social model shifts the emphasis to the environment, arguing that limiting social barriers such as rigid social expectations, lack of acceptance, and lack of accommodations can best support autistic people to use their strengths to succeed in the world.  
 
We argue that the social model not only leads to more effective interventions but also offers further support for the mental and emotional well-being of autistic individuals. Normalizing sensory responses like stimming will be an important step, but redefining social norms must begin with education and combating the misconceptions surrounding autism. There has been some progress, for instance, with the normalization of fidget toys in the classroom and the recognition that not all children can sit at a desk all day. However, there are many more efforts needed to shape our society into a more inclusive place for those with autism and other neurodivergent abilities.

Watch theTEDx Talk below: