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What is Autism When We Look Beyond the Diagnosis?

Daily tasks such as following a conversation, understanding unspoken cues, managing sensory input, or shifting attention might seem automatic from the outside. But for people on the autism spectrum, these experiences can feel very different. The brain processes social information, sensory input, and routines in its own unique way. Autism Spectrum Disorder (ASD) is known as one form of neurodivergence, influencing how a person takes in their surroundings, interprets social interactions, and organizes their inner world.  It is called a spectrum because autism does not show up in one single way. Instead, it includes a wide range of experiences, strengths, and challenges. Each person may have their own combination of traits, their own level of support needs, and their own way of navigating the world. For some, this may look like experiencing sensory input more intensely, relying on repetitive movements for self-soothing, communicating in a very direct or literal way, or developing deep and highly focused interests that bring comfort and joy. In this  mini sketch, we examine how autism manifests in daily life, how these signs may differ among individuals, and what caregivers, clinicians, and autistic people can understand about these experiences.

What is Autism Spectrum Disorder? 

Autism Spectrum Disorder (often shortened to ASD or simply “autism”) is a neurodevelopmental disorder present at birth that may or may not be recognized in early childhood, marked by significant difficulty in social interactions, increased sensory sensitivity, repetitive or restrictive movements, and intense interest in specific subjects or topics. These symptoms must have been present since childhood. People with autism may struggle to pick up unspoken social norms or cues, engage in repetitive movements called “stimming” as a way of self-soothing, be extra sensitive to touch, sound, light, or textures, and feel the urge to “info-dump” or enthusiastically share information about their special interests. ASD falls under the more excellent umbrella term of “neurodivergence”; additionally, people without autism may be referred to as “allistic.” 

Signs of ASD

ASD can show up in many different ways. Although each experience is unique to each individual, there are some common signs that often characterize ASD:

  • Repetitive Motions: Stimming, also known as the repetitive behaviors of an autistic person to self-soothe and regulate. This is often associated with hand-flapping, clapping, or rocking. Stimming can also resemble foot-tapping, twirling hair, skin or hair picking/pulling, playing with jewelry, or even dancing. 
  • Sensory Issues: Sensory issues that can appear as overstimulation or understimulation. People with ASD may experience heightened sensitivity to sound, light, texture, foods, motions, and movements that quickly overwhelm them. Conversely, a person with ASD may be sensory seeking, meaning they look for increased stimulation, such as eating spicy foods, frequently touching their surroundings, blasting music loudly, or being drawn to bright colors.
  • Interpersonal Difficulties: Social difficulties can appear as not being able to differentiate between romantic or platonic conversation, difficulty discussing anything except specific interests or topics, speaking out of turn or talking for too long, saying in a monotone/ too loud/ too soft voice, difficulty determining when a conversation is ending or pivoting focus, inability to engage fluidly in small-talk, answering questions in a very literal manner, or not picking up humor or sarcasm. Many autistics report feeling drained after social interaction and needing significant time to recharge. Most people with autism can feel empathy or are even hyper-empathetic, contrary to stereotypes. However, the way they express empathy differs from that of a neurotypical person. 
  • Executive Dysfunction: They can experience executive dysfunction, which includes difficulty starting and/or completing tasks, time blindness, difficulty staying organized, an inability to focus on topics that are not of interest, and difficulty breaking an enormous task or goal into smaller steps. These issues can cause the person with ASD to feel overwhelmed and anxious. 
  • Difficulties in Expressing Emotions: They may experience difficulty recognizing and describing emotions occurring in their own body or mind (a condition known as alexithymia). A person with ASD may have difficulty describing how they feel or default to using less specific descriptors such as “bad” or “frustrated.” They can feel the physical sensations of emotions in their body, but cannot summon the emotional vocabulary word associated with those sensations. It can also appear difficult to parse apart similar emotions, such as sadness, depression, and grief. However, experiencing alexithymia does not mean that the individual cannot feel or express emotions. 
  • Intense Interests: Intense interests that could be a particular topic, subject, or person. What makes a person with ASD’s special interest unique is the depth and breadth of their knowledge of the topic. You might see a sudden change in demeanor when asking an individual with ASD about their interests. A shy or closed-off individual may suddenly light up with enthusiasm and joy and become very talkative if it’s about an interest they are deeply passionate about.
  • Meltdowns: A meltdown may look like a sudden outburst of intense emotion, like an explosion, where individuals lose control of themselves. A severe meltdown may include self-harm, such as head-banging or throwing things. Conversely, a meltdown may be implosive, where the individual cannot stand sobbing and crying due to feeling overwhelmed. 
  • Burnout: Burnout may look very similar to depression, with severe fatigue and tiredness, anhedonia (inability to feel joy or pleasure), depressed mood, decreased sensory tolerance, and irritability. What makes burnout experienced by individuals with ASD different than depression is that autistic burnout is triggered by overtaxing a person with ASD’s nervous system. Excessive social demands, prolonged daily masking, excessive sensory stimulation, and frequent tasks that are highly taxing on executive functioning can all contribute to burnout. In other words, the demands and expectations of a neurotypical world are mismatched with these individuals’ abilities and level of support. 

Diagnosing

When you are reading the signs, you might notice that you are experiencing some of these signs or have experienced them before. However, please note that one or even several of the experiences above do not automatically mean someone is autistic. Many of these traits are also seen in ADHD, anxiety, trauma responses, giftedness, or simply normal human variation. ASD is not defined by a single symptom but by patterns, duration, and how these traits affect daily functioning, and it can only be diagnosed through a comprehensive clinical evaluation. Presently, autism must be formally diagnosed by someone with a doctorate degree, such as a psychiatrist or a psychologist, although any therapist can recognize the signs of autism.

Because many of these signs overlap with other conditions, identifying autism can already be challenging. But another layer that often complicates the diagnostic process is gender. Autism can present differently in women and individuals assigned female at birth, and these differences are not always reflected in traditional diagnostic expectations, which is explained below.

Why the Difficulty in Diagnosing Women With Autism? 

Historically, much of the research about ASD has been focused primarily on males or those assigned male at birth. Because of this, boys are ten times more likely to be referred for autism testing than girls. This vast discrepancy is one of many reasons why autism may go undetected in girls and women for many years. These might be related to

  • Social Expectations:  A factor that contributes to autism being missed in girls and women relates to the social expectations they often grow up with. Many girls and those assigned female at birth learn, sometimes implicitly, to be more attentive to others’ needs and to blend into social environments. Autistic women may report increased sensory sensitivities because of this, or they may be perceived as highly introverted and shy, as they have learned that quietness can prevent any social awkwardness. However, many autistic women report significant fatigue after prolonged socializing and need ample time in the days following to recover from it. 
  • Different Levels of Masking: When a person is diagnosed with ASD, they may begin to hide these signs they are experiencing simply to get through daily life. They may seek acceptance, avoid uncomfortable reactions, or feel safer in social, school, or work settings. Over time, constantly adjust themselves to fit in, which is called masking. Many women with autism have become very proficient at masking or may not even be aware that they are due to social pressure, which makes recognizing the signs of autism in women more difficult. 

What is Masking? 

Masking is when a person with ASD intentionally hides or chooses to exhibit behaviors that help them blend in with their allistic or neurotypical peers, such as hiding stimming behaviors, forcing themselves to maintain eye contact, or becoming hypervigilant about perceiving unspoken social cues that do not come naturally. This is done in order to avoid social ostracization. However, frequent masking can often lead to increased anxiety, fatigue, autistic burnout, and a diffuse sense of self. In particular, social hypervigilance may be misdiagnosed as social anxiety, autistic burnout may be misdiagnosed as depression, and the diffuse sense of self may be misdiagnosed as borderline personality or CPTSD. (Note that all the former diagnoses can also be comorbid with autism.) Even an autistic meltdown triggered by sensory or emotional overstimulation may be called a “mental breakdown” or “hysterics” instead of being recognized for what it is. Moreover, those who are particularly adept at masking may be dismissed as autistic by healthcare providers altogether due to the individual’s low-level support needs.

Treatment 

ASD is a lifelong neurodevelopmental condition, so the goal of treatment is not to treat ASD, but to help individuals understand their needs and develop strategies that support daily functioning. Here are a few things to manage symptoms:

  • Somatic awareness helps the client recognize the physical signs that an autistic meltdown or burnout is approaching. Building mind-body awareness can help someone with autism recognize the signs before they lose control of themselves. That way, interventions can be made to prevent feeling physically or emotionally overwhelmed. Interventions can include changing their environment or finding a quiet room or place to relieve overstimulation. They can also involve using sensory aids, requesting a work-from-home day, and minimizing social interactions. 
  • Sensory aids: By listing and discovering sensory triggers with your client, you can help them find sensory aids that help mitigate sensory overload. This includes earplugs such as Loops or noise-canceling headphones, wearing lightly tinted sunglasses indoors, phone apps to help with executive functioning, or online ordering to avoid an overstimulating grocery store, buying loosely fitted clothing or clothing in soft, comfortable fabrics, and keeping “safe foods” in stock in their home. 
  • Addressing internalized shame: autistic clients may have internalized shame or feelings of inadequacy due to being unable to keep up with the neurotypical demands of the world, or from being socially ostracized by others their entire lives due to their social awkwardness. It’s important to remember that autistic clients will face the systemic issue of ableism in their everyday lives. Recognizing and validating those struggles and recognizing the strengths and gifts your client brings to the world can help raise self-esteem and decrease internalized shame and guilt. 
  • Career counseling may indicate that an individual with ASD in a work environment or occupation is too taxing or inconducive to managing autism. Helping the client find different options for work will improve the overall quality of life if changing jobs or job environments is an option. Some cases of autism may be severe enough that they make working at all extremely difficult. In these cases, helping clients find resources to apply for disability benefits may be more beneficial. 
  • Build emotional awareness and vocabulary for those struggling with alexithymia. Helping them recognize the physical symptoms of emotions and find the emotional vocabulary word associated with those symptoms can help increase their communication skills. Feelings wheels and lists of physical sensations related to emotions are helpful tools for combating alexithymia and building emotional awareness.

Take-aways

  • ASD is a neurodevelopmental disorder present at birth, often unrecognized early, characterized by social difficulties, sensory sensitivity, repetitive movements, and strong interests in specific topics.
  • ASD manifests in various ways, with common signs like repetitive motions, sensory issues, social difficulties, executive dysfunction, emotional expression problems, intense interests, meltdowns, and burnout.
  • Diagnosing ASD can be challenging due to overlapping symptoms and gender differences.
  • Treatments focus on somatic awareness, sensory aids, addressing internalized shame, career counseling, building emotional awareness help individuals understand their needs and develop strategies that support daily functioning

References

  • https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls 
  • https://www.uclahealth.org/news/article/understanding-undiagnosed-autism-adult-femal es 
  • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11001629/#:~:text=Personality%20disord ers%20were%20the%20most,frequently%20than%20men%20(16.7%25). 
  • https://www.durham.ac.uk/research/current/thought-leadership/women-with-autism–adh d-aren’t-diagnosed-until-adulthood/ 
  • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8306851/ 
  • https://www.verywellhealth.com/autism-in-women-5209272 
  • https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-burnout 
  • https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audienc es
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At Roamers Therapy, our psychotherapists are here to support you through anxiety, depression, trauma and relationship issues, race-ethnicity issues, LGBTQIA+ issues, ADHD, Autism, or any challenges you encounter. Our psychotherapists are trained in Cognitive Behavioral Therapy, Dialectical Behavioral Therapy, Psychodynamic Therapy, Acceptance, and Commitment Therapy, Person-Centered Therapy, and Gottman Therapy. 

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This page is also part of the Roamers Therapy Glossary; a collection of mental-health related definitions that are written by our therapists.

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