Joyous December to my Teammates, Parents, and Autistic Peers!
This month I want to look at women on the spectrum. Currently, boys are diagnosed with autism at 8 to 1 (8 boys to every girl) or 3 to 1 depending on which country you live in and which report you read. Many people believe this is in part because the condition affects more boys than girls; however, newer research indicates this may not necessarily be the case. Most of the early research into autism looked almost exclusively at the male population. This early research impacted the diagnostic tools and the criteria that we still use in diagnosis today. For example, poor eye contact, poor social reciprocity, social withdrawal or exerting too much control, a focus on a special interest that interferes with other aspects of learning or socializing, and often aggressive behaviors are what some consider to be hallmarks of ASD. When professionals see a female child with high anxiety, who experiences sensory sensitivities, who has an impaired attention span, and can’t cope with surprises they often over look ASD because she appears sociable, looks people in the eye, and does well in class. What we are finding is that Autism looks different in girls, women, or in others elsewhere on the gender spectrum.
One prominent individual researching this area is Tony Attwood. Though there is a mixed reaction to Tony Attwood in the #ActuallyAutistic community because he is is perceived to be disrespectful to women on the spectrum, refuses to give official diagnoses to women on the spectrum if they can mask appropriately and therefore “don’t need a diagnosis”, and he discredits the research of autistic women in the field publicly; His work on how autism looks different in the female population is thorough and accurate, though. So I am including his work because the data presented by him and his team is valid and helpful even if the presenter may not be.
According to the HealthEd video (https://vimeo.com/122940958) which shows Mr. Attwoood describing the differences exhibited in the female population:
Girls are better at social reciprocity. Boys either withdraw from situations “alone, not lonely,” or they take control and intrude. Boys don’t catch on to social nuances get annoyed and are annoying in return.
Girls, on the other hand, realize that they are not fitting in and analyze the situation. They tend to say “Who’s popular? Why is she popular? Let me do those things and fit in.”
Girls are on the invisible end of the spectrum because they have an intense desire to fit in and really do well at it. They have more complex camouflaging mechanisms of observation and imitation.
But this ability to fit in is more an intellectual than intuitive process. The girls don’t fit in because they naturally understand the nuances of social interaction, but rather because they have studied and copied it. They may read fiction, not only to enjoy the stories, but also to learn the social norms and understand the motives or reasons behind peoples inner thoughts and feelings. In fiction the inner feelings and motivations of characters, their internal monologues are there in black and white along with the actions. They may turn on TV subtitles because they will transcribe things that a neurodiverse person might miss. (e.g. door creaks creepily in the back ground, or uplifting music intensifies) which give added cues on the dialog of the characters. Girls may watch social dramas and develop a social persona based on their favorite main character. Because of these strong mimicry skills, many girls on the spectrum develop perfect pitch in singing, and develop skills in other languages – often speaking in near perfect accents even if their vocabulary is low.
Perhaps because of this intense study and the constant attempts to fit in, girls tend to have a more intense fear of making a mistake.
Neurodiverse girls also have a tendency to stay on the periphery of play and watch what’s going on before attempting to join in. Much like a skilled jump roper might watch the rhythm of the rope being turned a few times before jumping in. They tend to analyze the situation, use their judgment as to the best script for the situation, and then play out the script in real life. Neurodiverse girls tend also to work out the bugs in their scripts with their dolls, or have conversations with imaginary friends in order to achieve the same goal. They apologize more often when they feel they have “done it wrong” and are hyper focused on pleasing others. This is why they are over looked. Often when a boy points out others’ errors or makes a social faux pas, he gets upset and/or confrontational (and then sent for a referral); however, when a girl makes a mistake she is more likely to apologize for it and be forgiven and not have it noticed as a constant issue.
In terms of diagnostic criteria for girls, there are several areas to look at that are different from those for boys.
1 There is often a pathway through a cluster of diagnoses of secondary disorders such as:
- Anxiety Disorder,
- Borderline Personality Disorder,
- Eating Disorders such as Anorexia,
- Selective Mutism, or
- other concerns from a developmental diagnosis at an earlier age disregarded at the time because Autism was for boys.
2 In the differences in their play:
- Doll Play to replay and understand social situations, often going on past the age their peers have stopped playing with dolls.
- Disinterest in gender specific toys.
3 Gender presentation:
- ND girls may prefer to appear to be to be tomboys or have stronger associations with boys their age. (The presenter here assumes that this is because they don’t understand rules about being a girl and finds it easier to be around boys. Research from other teams suggests rather that there is a large percentage of ND people who also fall differently on the gender spectrum than their NT peers, a topic I plan on addressing in future blogs.)
- ND girls may also go in the opposite direction, becoming ultra-feminine.
- They may also go the anti-social route.
4 .Recovery from Social Exhaustion:
- Because they can mimic so well, girls may do well in scholastic or social situations; however, once home or in a safe place might melt down drastically or socially isolate once safe.
5 . Emotional Instability:
- Emotional storms and meltdowns
- Intensely feeling each emotion
- Difficulty moderating emotions
- Extreme sensitivity to the emotional states of others
6 . Special Interests:
- Girls’ special interests are often not too different from their peers as far as topic (horses, princesses, Greek mythology, etc.) but they do very in intensity or length of interest, or emotional intensity with regards to their special interest.
7 . May not like make up or perfume, due to sensory issues.
8 Dating difficulties:
- Poor judge of character
- Lack of peer group to discuss relationships with.
- Not understanding “signals.”
- Prone to date rape due to not understanding signals.
9 . Higher level of vulnerability to relationship predators.
There are also, of course, similarities between boys and girls being diagnosed.
- Sensory perception.
- Reading eyes and body language.
- Friendships easier in other cultures than ones own.
- A tendency to be bullied by peers for not fitting in.
- Clothing and fashion choices that may not follow gender or socioeconomic norms.
I have had people ask me, “Sophia, if girls are doing so well at fitting in, isn’t that good? Doesn’t it mean they don’t need help, that they are making it in the world?” One might think that way, after all, a current treatment for autism stipulates that 20-40 hours a week of intense behavior therapy will make autistic people indistinguishable from their peers by the time they are adults so that they may lead a productive and happy “normal” life. So, one might think that a girl on the spectrum has an advantage. She’s already half way there and doesn’t need help.
Well, my answer to this is, “Not so fast, friends.” As autistic women, we may be able to survive in the world; but, is that all there is…survival? If it costs me all of my energy to go to work… if I am always analyzing every situation at my child’s school functions, at Starbuck’s, in my office, with my partner’s co-workers, on the phone to anyone, on my social media…when am I me?
Undiagnosed women describe feeling broken, wrong, and exhausted all of the time, without understanding why. Spending so much time trying to look more ‘normal’ may make it easier for them to be accepted socially; but the cost can be, and often is, enormous; we’re talking about nervous breakdowns, suicide, and other dramatic full stops to perceived by others ‘normal’ behavior. Many women who have received a diagnosis describe feeling an overwhelming relief. Simply having a reason for why they are how they are, having sensory strategies that they can use to reduce meltdowns, having vocabulary to use to describe themselves accurately is liberating. For many women, receiving a correct diagnosis and a supportive environment is key to living.
In Maxine Share’s article “How Misdiagnosis Can Become a Nightmare for Girls on the Autism Spectrum” on The Mighty (https://themighty.com/2018/11/misdiagnosis-girls-autism-spectrum/), she gives some details on why an accurate diagnosis is necessary for all individuals. Girls with autism are often first given another diagnosis “ADHD, ODD, OCD, GAD… and later, anorexia or bulimia. They cut themselves and starved themselves — but it was all just for attention and control, don’t ya’ know!” Perhaps later on they were given the diagnosis of schizophrenia or borderline personality disorder, perhaps medicated and/or hospitalized. Girls are more often labeled as lazy when they “won’t do the work” instead of wondering if they ‘can’t,’ or if they need help. Parents of girls on the spectrum are often told to look into their parenting. Share asserts, and I wholeheartedly agree, that overlooking an Autism Diagnosis in girls or women can have devastating and life altering consequences.
She answers the question, “Why would anyone want to be diagnosed when they can ‘appear normal and fit in?” more eloquently than I am able to.
For more information on what it is like to be a woman with autism may I suggest you look at Jennifer O’Toole’s upcoming 6th book, The Sisterhood of the Spectrum: An Asperger Chick’s Guide to Life which you can find an excerpt of here https://the-art-of-autism.com/jennifer-otoole-the-sisterhood-of-the-spectrum/)
To hear these issues directly from women on the spectrum I would suggest watching “The Chameleons: women with autism I The Feed” https://www.youtube.com/watch?v=VJHa9xk16Hw&feature=youtu.be It is a powerful piece on the differences of autism in the female population, the difficulties of obtaining a diagnosis, the pain of misdiagnoses and more.
For another look into autism in the female population from the viewpoint of girls on the spectrum please watch https://www.youtube.com/watch?v=yq8AUVHN_Xs&feature=youtu.be
This article in The Guardian also breaks down the misdiagnoses and/or under-representation of women in diagnosis, and some of the dangers involved in this:
“Symptoms of Autism in Girls” By Lisa Jo Rudy, reviewed by Joel Forman, MD on VeryWell Health https://www.verywellhealth.com/signs-of-autism-in-girls-260304?utm_source=facebook&utm_medium=social&utm_campaign=shareurlbuttons
Autistic Girls ‘Need More School Support’ By Helen Ward Which states that a failure to support autistic girls’ friendship needs can lead to escalating anxiety. https://www.tes.com/news/autistic-girls-need-more-school-support?amp&__twitter_impression=true
I know I this looks like a lot of information, but these reference not only the voices of women on the spectrum; but also research into the differences. My hope is, as always, that you do not take my word for any of it, or my synopsis of what I have presented, as the truth. My hope remains that you will take the time to look into the resources presented, make your own connections and discover your own truths.
Until next time, may you find joy and rest in whichever of the many, varied, and beautiful winter holidays you may celebrate.