What Does Autism Look Like in Adulthood?
Autism, also known as Autism Spectrum Disorder (ASD), is a diagnosis present at birth and most described by sensory, behavioural, and social differences when compared to peers without autism. Autism is a relatively common disability in the population: about 1 in 50 Canadian children are diagnosed with autism spectrum disorder, which includes a spectrum of support needs and abilities.1 For example, Autistic people have a range of intellect, some are intellectually disabled (around 30%) and others are intellectually gifted.[i] Also, some Autistic people can use their voices to speak, while others use communication devices. Recent research estimates roughly 1.8% of Canadian adults are autistic.2
Autistic children become autistic adults. This means that Autistic adults are our colleagues, neighbours, friends, partners, and family members. Autistic adults think, communicate, and experience the world in ways that are different from non-autistic adults. For example, they may prefer or need clear routines and find sudden changes stressful, focus intensely on special interests and excel at detailed tasks, or communicate more directly than others expect. They may also find social interactions to be challenging, as Autistics and non-autistics have differences in the ways they empathize with each other’s communication styles.3 For example, a non-autistic person may say “I’m getting tired” to signal that they are ready to leave a party, to which an Autistic person responds “okay.” The Autistic person may not understand the unspoken, hidden message “I want to leave.” The non-autistic person’s unspoken message, and the Autistic person’s literal understanding, leads to a communication breakdown.
Every Autistic adult is unique. Some live entirely independently, while others rely on the natural human inclination towards living and interacting in community. Many Autistic people have fulfilling lives, careers, and relationships when communities are understanding and helpful with their differences.
Can Someone Be Diagnosed with Autism Later in Life?
Yes. Many Autistic people only discover they are Autistic as teens or adults. “Late” or “adult” diagnosis is becoming more common as awareness of autism grows and tools to diagnose autism become more sensitive. In the past, autism was usually recognized only in children with obvious language or intellectual differences, overlooking those without such differences. This was especially true of girls, women, and children of colour. Instead, they might have been labeled as shy, quirky, oppositional, anxious, rigid, or misdiagnosed with something else entirely. Autistic people socialized as girls and women, in particular, often develop strong social camouflaging skills, called “masking.” This is consciously or unconsciously imitating non-autistic social behaviour to fit in. For example, Autistic people may force themselves to make eye contact, rehearse social scripts for conversations, or hide signs of sensory overload. These efforts come at the cost of stress and exhaustion. Masking also makes autism harder to identify, even for psychologists.
Today, more adults are seeking autism assessments as they recognize lifelong patterns in themselves. Many seek a diagnosis after a family member, like their own child, is identified as Autistic. Others might read or hear about autism in the media or online. They may feel that it explains their own experiences. Receiving a diagnosis of ASD in adulthood can bring relief, self-understanding, and a way to receive much needed supports and accommodations. It can also help connect people to community supports and accommodations they likely missed out on earlier in life. However, getting an adult autism assessment isn’t always easy. Adult diagnostic services can be scarce and costly, since not all clinicians have experience with adult autism. A diagnosis — regardless of their stage of life — can help Autistic people access medical support services or accommodations that they need. That said, the Autistic community is still welcoming to people without a diagnosis and can also help as-yet-undiagnosed Autistic adults reframe their life story with more compassion and access beneficial community support. A thorough autism assessment can be done at any age: an autism diagnosis at 30, 50, or 80 years old is just as valid as a childhood diagnosis.
Of important note: autism research — and, therefore, autism assessment — has a Eurocentric skew, with a leaning towards high-income, Western countries.4 The cultural interpretation of observable behaviours and cognitive needs may make an autism diagnosis irrelevant, unhelpful, or misunderstood. For example, some cultures may be more accepting of autistic behaviours or needs. Therefore, in a culturally diverse society such as Canada, special attention needs to be paid to the cultural understanding of autism and use of culturally-adaptive assessment tools and approaches. Recent work in decolonizing autism research is aiding psychologists in integrating Indigenous ways of knowing, being, and doing into psychological practice and care.5
What Challenges do Autistic People Face in the Workplace?
Autistic people face many barriers at work because workplaces are designed for non-autistics. Autistic adults often require workplace accommodations to perform their job duties effectively and comfortably. These can include changes to physical environments (e.g., a quiet workspace), modified work schedules (e.g., remote/hybrid), and altered communication styles (e.g., verbal aid/written instruction). However, since autism is sometimes an “invisible” disability, it may be difficult for Autistic people to receive the needed accommodations.6 It is also important to note that many of the individual accommodations that help autistic people in the workplace could be beneficial for non-autistic people, too. Sometimes placing the burden of accommodation on the individual means that systems are slow to become more accommodating for everyone.
There is also the preliminary issue of whether to disclose the diagnosis at work at all (if the label can be hidden). One frequently reported consequence of being transparent about autism is experiencing stigma and discrimination from coworkers and managers, leading to strong feelings of exclusion and lack of belonging in the workplace.7 The label of “autism” guides the view of autistic employees’ capabilities, where characteristics like attention to detail, difficulties with multitasking, and monotonous tone of voice are mistakenly equated with an inability to perform the job.8
As a result, Autistic people may choose, if able, to hide their more apparent autistic traits through masking behaviours, to ultimately be perceived as non-autistic and, thus, avoid social rejection.9 This “social camouflaging” in the workplace is motivated by desires to achieve social acceptance, make things easier for their colleagues, and/or to avoid the possibility of bullying. Unfortunately, this approach has detrimental effects on Autistic peoples’ wellbeing, including extreme exhaustion and fatigue, symptoms of chronic stress due to worse physical and mental health, feelings of suicidality, and sensory overwhelm.10
These workplace issues force Autistic adults to weigh the potential benefits of disclosure (e.g., accommodations) against the costs of being transparent (i.e., stereotype, bias).
What About Mental Health in Autistic Adults?
Autistic adults face higher rates of co-occurring mental health conditions than are seen in the general population. These include anxiety, depression, ADHD, OCD, and addiction.11-13 Up to 70% of Autistic people live with some form of anxiety, one of the most common co-occurring diagnoses. However, psychiatric conditions are often misdiagnosed in Autistic people and thus, undertreated in autistic adults.12
Identifying co-occurring conditions in Autistic individuals can be challenging, as some characteristics of autism may resemble symptoms of other conditions, such as anxiety, and vice versa. In addition, many diagnostic screening tools were developed for non-autistic populations and may not fully capture how conditions present in Autistic people. For example, anxiety in Autistic individuals may appear as fear of change, social anxiety, or ritualistic behaviours that are not always reflected in standard diagnostic criteria.14 Untreated anxiety in Autistic adults is known to lead to negative mental health outcomes, including depression, self-harm, and poor quality of life.12 Because of these reasons, it is imperative that adults seeking a psychological assessment for autism seek a comprehensive differential evaluation that addresses overlapping and co-occurring presentations.
Autistic adults in particular experience significant barriers to accessing appropriate mental health services and report more unmet support needs compared to the general population.15 These barriers include a shortage of mental health clinicians with autism-specific training, limited and disconnected community resources, and challenges navigating complex healthcare systems.15-17 Delays in diagnosis and barriers to accessing neuroaffirming healthcare are associated with adverse health outcomes and a greater need for more intensive support over time.18
References
References for this document can be found by following this link.
You can consult with a registered psychologist to find out if psychological interventions might be of help to you. Provincial, territorial, and some municipal associations of psychology may make available a referral list of practicing psychologists that can be searched for appropriate services. For the names and coordinates of provincial and territorial associations of psychology, go to https://cpa.ca/public/whatisapsychologist/PTassociations/.
This fact sheet has been prepared for the Canadian Psychological Association by Chris Dabbs, Ph.D., R.Psych and Anastasia Kildeeva, B.A., University of Lethbridge.
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[i] Linguistic preference for discussing ASD differs across geographic region, language, and culture. Some prefer person-first language (e.g., ‘person with autism’) while others prefer identity-first language (e.g., ‘autistic person’). Identity-first language has been used throughout this document, as it is the preference of most English-speaking Autistic people, but we would like to hold space here to honour the different ways Autistic people and communities refer to themselves.