Written by Mariya Kika, M.H.Sc., Speech-Language Pathologist, Reg. CASLPO
Table of Contents
You studied people. You watched when friends laughed and copied the timing. You rehearsed phone calls before you made them, and replayed conversations for hours afterward for things you could have or should have said differently. From the outside, you seemed to be managing. Inside, every social interaction cost you more than it seemed to cost anyone else.
Then, perhaps in your thirties or forties, something shifted. Maybe your child was assessed and the questions sounded familiar. Maybe burnout hit and the usual coping stopped working. Maybe a friend shared their own diagnosis. However you got here, the word autism started to fit.
In plain language: Many autistic women aren't diagnosed until adulthood. Some learned early to hide their differences by copying others and rehearsing conversations and skills. This is called masking, and it can be exhausting. A late diagnosis can bring both relief and grief at once. Support after diagnosis can help you understand your communication style, create personalized strategies and come to terms with masking.
Why is autism in women often diagnosed later?
Autism spectrum disorder (ASD or autism) in young girls has often been recognized late or missed altogether. A 2017 review looked at 54 studies and estimated the ratio of autistic males to females at about 3 to 1, lower than the 4 to 1 often quoted. The researchers noted that part of the reason girls are more likely to be overlooked, misdiagnosed or identified late is due to the fact that diagnostic criteria were mostly built around how ASD shows up in boys.
For many, a missed ASD diagnosis has instead shown up as a misdiagnosis, meaning that they were given other explanations first. Often, girls may be given explanations such as anxiety, shyness, or were simply expected to “grow out of it”.
Many nonbinary and gender-diverse autistic adults describe a similar path to a late diagnosis.
What is masking, and what can it cost?
Masking, also called camouflaging, means hiding or making up for autistic traits to better fit in with others. It has been described to have three distinct aspects:
Blending in to avoid standing out, being bullied or being treated unfairly at work
Hiding traits, such as holding back stimming or acting out a "character" in social settings
Making up for differences by forcing eye contact, preparing questions or rehearsing conversations
Masking often works in the moment. It can help individuals keep their jobs, make friends and stay safe. But it is not without consequences.
Most commonly, it leads to later feelings of exhaustion, alongside potential anxiety, increased internal stress, and a sense of not being their true self. Masking can also hide support needs, which is one reason autism is missed.
Over time, the gap between what life demands and the energy you have can lead to autistic burnout. It can show up as long-lasting exhaustion, a loss or regression of skills you used to have, and lower tolerance for sensory input like noise and light. Recovery will differ between individuals, but common needs often include acceptance, increased support and lowered expectations, time to self-regulate, and being able to live with reduced masking.
Importantly, time to self-regulate does not necessarily mean static rest. It might include seeking sensory input such as heavy pressure, participating in activities or hobbies that are fulfilling, or returning to something comforting.
What can a late diagnosis feel like?
There's no single reaction to a late diagnosis and it would be reductive to assume so. When managing and sorting through their responses, many women describe a mix of:
Relief, because there's finally an explanation
Grief for the younger self who struggled without help
Rumination or re-reading the past, as old memories are reframed in a new light
Questioning self-identity, such as "Which parts of me are the mask?"
Mixed reactions from others, from support to "But you don't seem autistic"
All of these are common, and it might be that there is no immediate reaction or that processing the diagnosis takes any length of time, from a few days to a few weeks. Connecting with other autistic adults, online or in person, is something many people find helps.
How do you get an autism assessment as an adult in Ontario?
In Ontario, adults are usually assessed by a psychologist or a psychiatrist. According to Autism Ontario:
Psychiatrists are covered by OHIP, but you usually need a referral from your family doctor or nurse practitioner.
Psychologists in public settings, such as hospitals, may be covered by OHIP, also with a referral.
Private psychologists charge fees. You can usually refer yourself, and some work health plans cover part of the cost.
Autism Ontario's website lists assessment options by region, including virtual options.
Do you need a formal diagnosis to get support?
No. Many supports, including speech therapy and communication coaching, start from your lived experiences and what you want to work on. You can work on communication goals regardless of if you’re waiting for an assessment, not pursuing one at all, or have simply just begun researching.
Some things, such as certain workplace or school accommodations, may need documentation from a health professional. That documentation usually focuses on your needs rather than your diagnosis.
How can communication support help after a late diagnosis?
After a late diagnosis, many women want to understand their own communication style without the mask in the way. A speech-language pathologist (SLP) can help you:
Map your communication profile, including your strengths, what takes the most energy and what drains you fastest
Use scripts and rehearsal on purpose, as tools you pick up when needed
Advocate for yourself, with family, friends, partners and colleagues
Plan your energy around social, sensory and work demands
Prepare for conversations about your diagnosis, if and when you want to have them
The aim is to make communication feel more manageable on your terms, not to make you sound more typical.
When should you reach out for more support?
If exhaustion, low mood or anxiety is affecting your daily life, talk to your family doctor or a mental health professional.
This article is general information, not medical or mental health advice.
Sources
Loomes R, Hull L, Mandy WPL. What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 2017. Summary: IACC.
Begeer S, et al. Sex differences in the timing of identification among children and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 2013.
Hull L, Petrides KV, Allison C, et al. "Putting on my best normal": social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 2017.
Raymaker DM, Teo AR, Steckler NA, et al. "Having all of your internal resources exhausted beyond measure and being left with no clean-up crew": defining autistic burnout. Autism in Adulthood, 2020.
Autism Ontario. Adult assessment.
About the author
Mariya Kika is a registered speech-language pathologist and the founder of Cognicare Speech Therapy, operating virtually across Ontario. She holds a Master of Health Science from the University of Toronto. She previously worked as the sole speech-language pathologist in an intensive outpatient program with the University Health Network. She is a member of the Canadian Concussion Network, Ontario Brain Injury Association, Toronto Brain Injury Association, FND Society, and Canadian Telerehab Community of Practice.
For more on how speech therapy can help you, read more about how speech therapy isn’t only for little ones, as well as an overview of services for social communication