Late Identified Autism in Women

If you’re reading this article, I’m going to take a guess that you are an adult woman who is wondering whether they are autistic or not, or you may have even received a diagnosis of autism later in life. Either way, you’re seeking to know more about the late identified autistic female experience. My hope is that this article can help you understand yourself better in some way, stoke the fires of self compassion, and to either plant the seed or further solidify (depending where you are on your journey) that there is nothing wrong with you just as you are.

I’m going to say it again for the people in the back, there is nothing wrong with you. If it doesn’t feel possible to believe that right now, you could try and take a deep breath and just ask yourself, “what if it were possible that nothing is wrong with me?”. It’s okay if it’s hard to believe at first, and not only is it okay, but given the history of autism, it is completely understandable.

Now I want to give you a bit of research to help strengthen this belief that nothing is wrong with you, and there are reasons why you have ended up at this place in life.

The previous belief about autism was that for every 4 autistic males, there was 1 autistic female. Is that actually true? Well according to the researcher McCrossin (2022), it is absolutely not true – and in fact, they found the ratio to be closer to 3 autistic males for every 4 autistic females. And, not only that, but they estimate that 80% of autistic females are undiagnosed at 18 years old. Can you actually even believe that? It’s no wonder that late identified autistic women have spent their lives wondering what’s wrong with them or asking themselves why they feel different from others.

            Deep breath. “There is nothing wrong with me”.

The next question is then, well how did medical professionals and researchers get it so wrong? It’s because the original understanding of autism was based on young boys, and this male manifestation definition of autism has continued until only more recently. So if you aren’t a white male who has a keen interest in trains and doesn’t like making eye contact, you very likely wouldn’t have been identified as being autistic.

Spoiler alert – autism often shows up differently in men than it does in women. The core traits of autism are the same, but the way they actually show up in autistic women and men has been found to be different. So much so that there has more recently been considered to be a female autism phenotype. I will go over a few of the more significant pieces of the female autism phenotype in this article, but I also want to mention that what I cover is not exhaustive. The research is still really lacking, and a lot of what we know about the female autism phenotype is from autistic creators sharing online about their experiences or what they’ve seen. I encourage you to explore their accounts and see what resonates (or not) for you – I will include links at the end in the resources section.

Masking or Camouflaging

Autistic women tend to work harder at masking or camouflaging (pretending to appear nonautistic) than autistic men (Cage & Troxell-Whitman, 2019; Hull et al, 2020). This means that autistic women are more likely to appear “normal”, but really it’s that they are exhausting themselves to behave in a way that allows them to fit in more easily (like that image of the duck that looks calm on the surface, but if you look below the water, their feet are paddling frantically).

I have to share this one fascinating study I read by Head et al. (2014) that found that in children aged 10 to 16 years old, nonautistic boys and autistic girls were found to have similar levels of social ability based on a friendship questionnaire. I want to try to make this more clear because it’s such an interesting finding.

The ranking of social ability went:

1st to nonautistic females

2nd tied to autistic females and nonautistic males

3rd to autistic males

Autistic females and nonautistic males were found to have similar levels of social ability – so again, when everyone was looking for a definition that matched autistic boys, autistic females were largely missed.

Masking and social difficulties can show up in a variety of ways in autistic women. Some of the possible ways are:

-being able to make small talk but finding it really challenging and/or hating it

-being able to make eye contact (or something that looks like eye contact by focusing on a person’s forehead when talking to them) but finding it uncomfortable

-having friends but finding the rules of friendship confusing

-watching others closely to see how they behave and what they say, and then copying them

Are there any ways that you have modified how you act or what you say in order to fit in? And if so, does this result in you feeling exhausted, drained and needing a lot of recovery time after social situations?

Special Interests

Autistic women often have special interests that are seen as more socially acceptable, so they are not flagged as special interests in the autistic sense. These interests could be things like fashion, makeup, animals, food, or movies.

Do you feel like you have any very intense interests? Do you feel like when you are interested in something, you really dive deep into it, learn everything about it, collect all the things (actual things or information) – in a way that others around you don’t seem to do when they are interested in something?

Misdiagnosis and Co-occurring Conditions

Autistic women can be misdiagnosed with so many other things – eating disorders, Borderline Personality Disorder, complex PTSD (Carpita et al., 2024). And, autistic individuals are at higher risk of co-occurring mental health conditions compared with the general population. These health conditions include depression, anxiety (Hull et al., 2021), Attention Deficit Hyperactivity Disorder (ADHD), self-harm and suicidality, Obsessive Compulsive Disorder (OCD) (Doi et al., 2021), Post Traumatic Stress Disorder (PTSD) (Haruvi-Lamdan et al., 2020), and bipolar disorder (Varcin et al., 2022).

Have you been diagnosed with any of these or something else, yet felt like when you received this diagnosis, you were still missing something?

Autistic Burnout

I want to also talk about autistic burnout, because it is different from regular burnout. And as a late identified autistic woman, there is a good chance you have experienced burnout. One study found that 69% of participants had experienced at least one period of autistic burnout, and 46% had experienced it four or more times (Mantzalas et al., 2024). There isn’t yet an official definition of autistic burnout, but it is generally understood to be when your demands exceed your capacity. Some suggested descriptions of autistic burnout include:

-“chronic exhaustion…, reduced tolerance to stimulus” (Raymaker et al., 2020, p. 136)

-“expectations outweighing abilities” (Raymaker et al., 2020, p. 137)

-“withdrawal, masking and executive functioning problems” (Arnold et al., 2023, p. 1915)

Raymaker et al. (2020) suggest that there are four main areas of life stressors that can contribute to the cumulative load an autistic person experiences: “masking, expectations (family, society, school/work), disability management [and] life-change stress (transitions, mental health crises, etc.)” (p. 139). Without the ability to get adequate relief from these stressors, autistic burnout happens.

There is no agreement yet on the duration of autistic burnout, some saying three or more months and others noting acute instances.

Have you either identified with the term burnout or been told that you have burnout? Have you tried to recover from burnout and found it exceptionally hard? Have you ever felt like what was being expected of you was more than you were able to provide?

The world has largely been designed for neurotypical people, so it’s no wonder if you are a late identified autistic woman, that you have been struggling your whole life and maybe always wondering what was wrong with you.

So now we can see the path that brought you here. It’s not fair, it sucks, and it also makes sense.

At this point you might be having some questions, like:

How do I tell if I am autistic or have complex PTSD/borderline personality disorder/trauma/etc? That’s not something I can answer, but I would say keep a list of all the things that stand out to you as reasons you might have autism, or things you identify with. There are online diagnostic tools that you can use (such as those on Embrace Autism) to help give you some idea, but they are not an official diagnosis. Seeking an official autism diagnosis is not easy or cheap and may not be feasible for you, and if this is the case you can always take time to explore what self diagnosis might look like for you. Many folks use self diagnosis, and it is a valid choice.

But what if I’m just faking it? Or what if it’s not as bad as I think? But I have empathy and can make eye contact, so doesn’t that mean I can’t be autistic? And aren’t we all a little bit autistic anyway??

These are all very common things to be wondering about, and are not surprising given the fact that as a late identified autistic woman you have lived your life NOT knowing that you are autistic and thinking that you are the problem. It’s understandable to be feeling imposter syndrome – feeling like you’re not autistic enough, not really autistic, and on and on. But you know what – you are enough just as you are. You don’t owe it to anyone to perform for them, to show up the way people want you to or expect you to. You deserve to feel like your needs matter, and it’s okay if those needs are different from other people. Wherever this journey of self exploration leads you, you have been brave and curious and openhearted.

            Deep breath.

“I am enough. I am not broken and do not need to be fixed. My needs are valid.”

Some final questions to consider:

-If you are identifying with autism, does that change how you look back at experiences in your life? How so?

-Are there people you feel more comfortable unmasking with? Are there times where it feels like unmasking is not an option?

-Regardless of a diagnosis, are there any ways that you could allow yourself accommodations to be more comfortable? (A couple of examples are bringing noise cancelling headphones/earplugs with you when you go out, or allowing yourself to say no to social situations sometimes.)

There are many wonderful resources to learn more about late identified autism in women, and here are a few:

-Mom on the Spectrum Youtube channel: https://www.youtube.com/@MomontheSpectrum

-Dr Kim Sage, Licensed Psychologist Youtube channel: https://www.youtube.com/@DrKimSage

-Oh, That’s Just My Autism podcast by Melissa Tacia: https://open.spotify.com/show/4RDyBTLKsbzD5eyk6cLDvX

-The Other Autism Podcast by Kristen Hovet: https://other-autism.com

Other great autism resources:

-Unmasking Autism by Devon Price [book]

-Embrace Autism: https://embrace-autism.com/

-Neurodivergent Insights by Dr Megan Neff: https://neurodivergentinsights.com/

Academic References

Arnold, S. R. C., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023b). Confirming the nature of autistic burnout. Autism: The International Journal of Research and Practice, 27(7), 1906-1918. https://doi.org/10.1177/13623613221147410

Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 49(5), 1899-1911. https://doi.org/10.1007/s10803-018-03878-x

Carpita, B., Nardi, B., Pronestì, C., Parri, F., Giovannoni, F., Cremone, I. M., Pini, S., & Dell’Osso, L. (2024). May female autism spectrum be masked by eating disorders, borderline personality disorder, or complex PTSD symptoms? A case series. Brain Sciences, 14(1), 37. https://doi.org/10.3390/brainsci14010037

Dell’Osso, L., & Carpita, B. (2021). Camouflaging: psychopathological meanings and clinical relevance in autism spectrum conditions. CNS Spectrums, 26(5), 437–439. https://doi.org/10.1017/S1092852920001467

Doi, S., Kobayashi, Y., Takebayashi, Y., Mizokawa, E., Nakagawa, A., Mimura, M., & Horikoshi, M. (2021). Associations of autism traits with obsessive compulsive symptoms and well-being in patients with obsessive compulsive disorder: A cross-sectional study. Frontiers in Psychology, 12, 1-10. https://doi.org/10.3389/fpsyg.2021.697717 

Haruvi-Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism spectrum disorder and post-traumatic stress disorder: An unexplored co-occurrence of conditions. Autism: The International Journal of Research and Practice, 24(4), 884-898. https://doi.org/10.1177/1362361320912143

Head, A. M., McGillivray, J. A., & Stokes, M. A. (2014). Gender differences in emotionality and sociability in children with autism spectrum disorders. Molecular Autism, 5(1), 19-19. https://doi.org/10.1186/2040-2392-5-19

Hull, L., Lai, M., Baron-Cohen, S., Allison, C., Smith, P., Petrides, K. V., & Mandy, W. (2020). Gender differences in self-reported camouflaging in autistic and non-autistic adults. Autism, 24(2), 352-363. https://doi.org/10.1177/1362361319864804

Mantzalas, J., Richdale, A. L., Li, X., & Dissanayake, C. (2024). Measuring and validating autistic burnout. Autism Research. https://doi.org/10.1002/aur.3129

McCrossin, R. (2022). Finding the true number of females with autistic spectrum disorder by estimating the biases in initial recognition and clinical diagnosis. Children (Basel), 9(2), 272. https://doi.org/10.3390/children9020272

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in Adulthood: Challenges and Management, 2(2), 132-143. https://doi.org/10.1089/aut.2019.0079

Varcin, K. J., Herniman, S. E., Lin, A., Chen, Y., Perry, Y., Pugh, C., Chisholm, K., Whitehouse, A. J. O., & Wood, S. J. (2022). Occurrence of psychosis and bipolar disorder in adults with autism: A systematic review and meta-analysis. Neuroscience and Biobehavioral Reviews, 134, 14. https://doi.org/10.1016/j.neubiorev.2022.104543