I know I don’t look autistic: What you need to know about autism in females

This is a video for healthcare professionals — including doctors, therapists, psychologists, social workers, and nurses — who may be confused about autism in women, girls, and those who were assigned female at birth (afab). If you suspect that you may be autistic, feel free to share this video with your healthcare provider.

Dawn Prince-Hughes quotes

Dawn Prince-Hughes is an autistic anthropologist, primatologist, and ethnologist. She is an adjunct professor at Western Washington University.

Here are some quotes from “An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives” in Ethos, Journal of the Society for Psychological Anthropology.

To read the entire article, check out:

On being incredibly sensitive:

“Since I can remember — and that is from my own beginning — I have been pierced and pained by the intensity of life. There were many times as a child I believed I would crumble in on myself, my emotional skeleton finally eaten away by the screaming and clutching of a modern society that dissolved me. ‘Normal life’, other people call it.”

Dawn Prince-Hughes

“I would sit at my desk at school or on the steps of my house and feel the eating away on the inside of me and the growing pressure outside — on my skin, my eyes, my ears — and I would wonder if I would just disappear. I was sure it could happen and I would cry. I felt as though I was made of stone and pain, as if my frame was a crying fossil…”

Dawn Prince-Hughes

On autism as hyper-connectedness:

“I don’t have a good sense of where I start and end and where the things around me have boundaries. I am always a living part of a living world. I inhabit this living world with everything feeling like an extension of myself, and with myself as an extension of all around me.”

Dawn Prince-Hughes

“My struggles with school and its reflection as a training ground for disconnection started early in my life. From the din and pain of kindergarten to the time I quit high school and was then homeless for many years. People would tell me I ‘wasn’t cut out’ for school and normal life and now I know it was because I wasn’t cut out at all. I was just connected. I invoke these particular memories here to begin to reflect on how that connectedness, and antidote to all the cutting and dismembering we are taught through formal education, eventually led to my being an anthropologist, a person, a mother without seams.”

Dawn Prince-Hughes

“We are all strange and broken and beautiful in our own ways. We are each so afraid of disconnection and yet it can’t be easily escaped; some say it is an inevitable state of being and, perhaps, the price of consciousness. That fact makes our connections to other living things all the more important to cultivate. There is beauty in our difference and also beauty in our sameness: sameness with other animals, sameness with one another. We feel the loss of so many things: falling forests, disappearing animals, the loss of each other as we move far and fast in our culture.”

Dawn Prince-Hughes

“I think back to our original ancestors. If they were, as I believe, like me in their way of being, their needs were simple after the eating and drinking: to be loved, to be appreciated for their special abilities, to want to leave something meaningful behind them.”

Dawn Prince-Hughes

On the deficit model of autism and autism being a disability only in a particular context:

“Knowing that there is much illusion in the world I feel sure that my way of being is only a disability of context, that what have been labeled symptoms of autism in the context of my culture are inherited gifts of insight and action.”

Dawn Prince-Hughes

“I knew I would be honest when [my son] asked questions, that I would make sure there were no final answers to anything, and because being broken is, to a large degree, dependent on context, I would protect him from the elements of this culture that would wound him wrongly.”

Dawn Prince-Hughes

On motherhood as an autistic mother:

“At times, though, the prospect of being a modern mother would overtake me. Soon before my son was born my fears about being a different kind of mother came back to me. Surrounded as I was by the same culture that had always pointed out my potential failings as a single entity, I now saw evidence everywhere that motherhood in the material and disconnected world was something every mother needed guidance to survive.”

Dawn Prince-Hughes

“Even more for [autistic] mothers like me than those of the ‘normal’ [neurotypical] type, there are very frightening pitfalls; for example, the kind of wild sensitivity autism can bring to the surface at K-Mart is like unto an elemental force. Discomfort and bewilderment in certain settings like that can engulf people like me with such ferocity that people who don’t understand its effects might well believe they are dealing with some escaped animal.”

Dawn Prince-Hughes

On being an autistic mother to an autistic son:

“The way [my son] is connected has been as terrible a thing as it has been wondrous. When he was trying to save a spider at the library when he was in kindergarten, urging it to climb onto his hand to put it outside, some teenage boys came over and killed it. … He cried for days about the death of the spider and his helplessness to save it. A year later … when I came out to see what he was doing, he proudly showed me that he was escorting baby spiders, the size of pinpoints, over to the bush one by one so that they could find a better place to live. He was still whole.”

Dawn Prince-Hughes

“Late in kindergarten, though, he came home from school crying because he was different. Through his tears he told me that he cares about things the other kids don’t care about.”

Dawn Prince-Hughes

“I had hoped that the beauty I have shown him about his difference would carry him through … It soon became clear, though, that he was learning, through the flooding of his senses, in a time and place too loud and bright and complicated, that human people can be dangerous. Even though I explained to him that they are also wondrous and beautiful, I can’t argue with what he was beginning to understand.”

Dawn Prince-Hughes

“Unfortunately, the chief danger and distance he was learning is that people can tell you that what you are isn’t what you should be. I knew that the children at school were teasing him for talking to plants and bugs an rocks. His teacher told us he had a learning disability and had some attention deficit problems. He was starting to not be able to sleep at night and had anxiety attacks. Where he had always been an easy child he started to throw himself to the floor and scream over the smallest challenges. He started to be unable to go to restaurants because the lights hurt his eyes and the normal noise of conversation hurt his ears … He developed strict routines and would fall apart if something unexpected happened. He started to develop tics. He was becoming contextually autistic.”

Dawn Prince-Hughes

“I have home schooled him for the last three years and he is bright and flourishing. He is contextually open and interested in the world and the people close to him, his family and friends that mirror his gifts and help him make meaningful sense of being a human person … Where he had started to be self-conscious of his connection to all the things around him, he now once more takes me by the hand to share the world.”

Dawn Prince-Hughes

“Now that my son is nine, we share our sense of wonder that we should be a part of so much. We will be walking and see a leaf fall from a tree. ‘I felt that like it slipped off my finger and slipped down my spine to the roots of my feet,’ I will tell him. His hand in mine he’ll smile and nod.”

Dawn Prince-Hughes

Common misdiagnoses given to undiagnosed autistic women

“There is increasing evidence that … autism symptoms in women and girls are frequently overlooked and misdiagnosed.”

Robert T. Muller

Autistic females and some males who have not yet received an autism diagnosis often go through life with only partial explanations for their difficulties and differences. These explanations usually come in the form of psychiatric and mental health misdiagnoses, incorrect, or partial diagnoses.

Common misdiagnoses and partial diagnoses given to undiagnosed autistic individuals include:

  • Borderline personality disorder (BPD)
  • Schizophrenia
  • Post-traumatic stress disorder (PTSD)
  • Bipolar disorder
  • Obsessive-compulsive disorder (OCD)
  • Depression
  • Social anxiety disorder
  • Generalized anxiety disorder
  • Anorexia and/or other eating disorders
  • Phobias

It should be noted that just as these conditions can co-occur in various combinations in those who are not autistic (aka neurotypical), autistic individuals can also have one or more of the above conditions. The majority of autistic individuals, for example, are diagnosed with anxiety and/or depression and/or PTSD at some point in their lives, either as a direct result of autism or from living in a world that is discriminatory to autistic people and autistic traits.

Many individuals on the spectrum have significant and numerous experiences of being bullied, rejected, sexually abused, and otherwise mistreated and victimized. There is significant evidence showing that those on the spectrum are more naive, trusting, and desperate for acceptance from peers — and therefore more likely to get into abusive relationships (due to not noticing or responding to red flags sooner) and other scenarios that put them at risk.

So why should we be concerned?

“I’ve been through quite a long journey, being given about 10 mental health diagnoses along the way. It was getting to that point where it felt like I was caught in the middle of a guessing game. … ‘We don’t really understand — let’s keep throwing labels and see what sticks.'”

Emily Swiatek

When an undiagnosed autistic adult is diagnosed with any of the above conditions or other mental health conditions, it’s only part of the picture.

An undiagnosed autistic individual who receives misdiagnoses or partial diagnoses can experience significant problems with stigma and discrimination (especially in the case of schizophrenia and borderline personality disorder), and even discrimination from healthcare professionals who specialize in treatment of these conditions.

They can also receive years of unnecessary psychotropic medications and various forms of talk therapy with little to no positive impact on their lives (often due to the therapist or psychologist not understanding autism and therefore not able to address the main presenting concerns). This can lead to significant frustration, hopelessness, and a tendency to self-blame.

Most importantly, undiagnosed autistic adults who have received wrong or partial mental health diagnoses lack the knowledge that will set them on the path to self-acceptance.

For autistic individuals of any age, sex, gender, and ethnicity, self-understanding and self-acceptance are key to contentment and thriving in life.

Facts About Undiagnosed Autism (Infographic)

Here’s the problem: the number of children diagnosed with autism today is far greater than the number of adults diagnosed with autism. The two numbers should match. This means, there are a lot of adults in need of diagnosis.

Sources:

  • Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Robinson-Rosenberg, C., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L. C., Harrington, R., Lopez, M., Fitzgerald, R. T., Hewitt, A., … & Dowling, N. F. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years. Surveillance Summaries, 67(6), 1-23. http://dx.doi.org/10.15585/mmwr.ss6706a1
  • Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10). doi:10.1007/s10803-016-2872-8
  • Cusack, J., Shaw, S., Spiers, J., & Sterry, R. (2016). Personal tragedies, public crisis: The urgent need for a national response to early death in autism. Autistica website. https://www.autistica.org.uk/downloads/files/Personal-tragedies-public-crisis-ONLINE.pdf

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What is the Female Autism Phenotype?

Some females are diagnosed as autistic at a young age, but the majority go undiagnosed until their teenage or adult years. A large number are never diagnosed. Why is this the case?

The girls that get diagnosed as autistic at a young age often present with more male-like or “traditional” autistic characteristics. One might say that they present with more “obvious” autistic traits. While the girls who get diagnosed early in life are NOT “more autistic”, their characteristics DO happen to be more in line with the stereotypical, incomplete account of autism, on which the DSM criteria are based.

Both the earliest research in autism and the majority of research in autism have been done in men and boys. This has led several autism experts to conclude that significant revisions to the diagnostic criteria and assessment tools are required to ensure reliable autism diagnosis in all genders.

The other reason that girls might be diagnosed early is that they had the good fortune of receiving an autism assessment by a healthcare professional who was well-versed in the many faces of autism (aka, autism’s heterogeneity) and highly knowledgeable about the ways that autism can present very differently in females.

Here are some ways that autism presents differently in females:

Autistic females are generally more socially-inclined and socially-capable than their male peers. While their social lives will usually be different than those of non-autistic females — generally having fewer friendships and spending more time alone — they are less likely to be seen as different or abnormal.

Autistic females are better able to unconsciously “camouflage” or “mask” their autistic characteristics and difficulties in such a way that they generally fit in and do not seem different from their peers. There are incredibly high emotional and physical impacts of camouflaging, which can result in significant risk of developing mental health disorders and autoimmune disease. High risk of suicide is correlated with camouflaging behaviours.

Autistic women and girls tend to have fewer repetitive behaviours (such as hand-flapping and rocking back and forth), or are more inclined to hide these behaviours from others.

The special interests of autistic women and girls tend to be more varied and seen as more socially-acceptable than those of autistic men and boys (though there are clear exceptions). Autistic women and girls are more likely to have special interests in makeup, celebrity culture, crafts, literature, poetry, music, and fine art.

Undiagnosed autistic girls who present with behavioural or emotional problems are likely to have these problems blamed on “feeling blue”, shyness, being highly sensitive, family problems, trauma, or other issues, while undiagnosed autistic female teens and women are more likely to be diagnosed with depression, PTSD, obsessive-compulsive disorder, anxiety, bipolar disorder, or borderline personality disorder. Usually the last option, or the option that no one thinks of, is AUTISM.

Read more here.