Females with Autism: Our journey

preface terms for Autism

It’s important to note that as of the latest version of the DSM (The Diagnostic and Statistical Manual of Mental Disorders – Currently version DSM-5), all diagnoses for all forms of Autism, such as Asperger’s Syndrome, High Functioning Autism, Classic Autism, et al., have now been placed under one umbrella term: Autism Spectrum Disorder (ASD).

I may make references to the older terms for Autism as when I was diagnosed they were at that time included in earlier versions of the DSM.

Being diagnosed with Asperger’s at 18 may seem late to some people, but the reality is that in terms of being a female and getting a diagnosis, I got lucky.

Some people wait until they’ve struggled through school, had a career and a family before someone finally says to them:

“Hey, I think you may have ASD.“

As many of you will know, it is true that most people with High Functioning Autism (or Asperger’s) are diagnosed in primary school, as it is usually something which becomes especially apparent in early schooling. For example, when a child begins early schooling, they are at a disadvantage when the teacher places them into increasingly more social situations, which essentially forces them into a state of discomfort, and not until then do their atypical social and emotional cues then become clearly evident.

However, most of the people who are diagnosed while still in primary school and in school are overall male. Despite not being gender specific, the traits that are seen as “common” in those with Autism seems to show more clearly in males, which means that they tend to be diagnosed earlier and more frequently than females – if even diagnosed at all.

As I said, Autism isn’t gender specific, meaning that although both males and females with Asperger’s share similar traits, the symptoms of Autism present in a significantly different way in girls, as opposed to the way they present in boys.

So, why are females diagnosed less?

Why are girls less likely to be diagnosed with Asperger’s or High Functioning Autism before adulthood?

The fact that statistically girls aren’t as often diagnosed in childhood as are boy does not mean that they don’t have it. So, why?

Females display Autistic traits differently to what is deemed to be the typical criteria. Most females who have Asperger’s are usually first diagnosed with disorders that share some symptoms with Asperger’s, like Anxiety and Depression, both of which do often present as diagnoses along with Asperger’s, as people with it are more prone to both of these (I’ve been diagnosed with both of these myself).

I mentioned in my post before this one that most early studies on Autism have focused on males, which has caused a long term discrepancy in the information available in textbooks which provide the information available on the traits of those on the Spectrum to the latest set of students studying the condition.

Essentially textbook examples of ASD tend to be more suited to males than females, simply because males portray those traits that have been studied more. This overall ignores the simple fact that males and females have different profiles in the way they present traits of Autism, which is compounded by, and almost entirely excludes anyone who doesn’t conform to modern non-binary male/female gender identity roles.

As a heterosexual female I can only just begin to guess how having Asperger’s or ASD could be different for someone who refers to themselves as anything other than male or female. Society doesn’t like it when it can’t place you in a box. It’s one of societies greatest flaws, which means that anyone who doesn’t quite blend in is either ignored as an anomaly or deemed strange. But Autism itself is a Spectrum Condition and Asperger’s is so widely misunderstood that putting it in a box makes little sense at all.

Yes, there are traits that all people on the Spectrum share, but everyone is also different and they portray those traits differently. Some may be more pronounced than others, while some may be hardly noticeable. For example to friends who have known me since childhood and family, I am clearly antisocial and overall don’t do well meeting new people.

I also take longer than others to pick up sarcasm and short snappy jokes – I do much better with long jokes that have a story to follow, and time for me to calculate the meaning of the joke in my head. However, to people who haven’t known me as long, I seem perfectly fine in a social setting.

I would not go so far as too say that I am the life of the party, but I’m able to fake enjoyment enough that people often don’t realise that I’m struggling to wrap my brain around the five different conversations people are throwing at me, the constantly changing facial expressions which obviously mean something but I haven’t got a clue what, and the fact that people seem to have no awareness of personal space, which means that girls keeps brushing against my arm with their blasted velvet sleeves, which just the feeling of makes me want to curl up in a ball and cry.

“But nope, to the outside world I seem perfectly content. What I just described is something that I have discovered to be a very female reaction to having Asperger’s in the world.”

So, are females with Asperger’s or ASD different to males who have ASD?

Here Are Five Traits That Define Asperger’s/ASD

1.Intellectual or Artistic Interest

People with Asperger’s are often obsessive about one particular subject or thing. I, for example, am passionate about history to the point that it can keep me awake at night.

If I can’t find the answer to my question, or if I’m really interested in a particular historical figure at the time, I will research it until I’ve found as much as I possibly can, or I have a headache – whichever comes first.

I also excelled at painting in high school, especially oil painting, and have continued to sketch and use oil paints, and I have a long history of choosing to read a book over talking to someone; both due to my awkwardness around conversations and my love of literature.

I love classical literature such as Jane Austen, Charles Dickens, Homer and William Shakespeare. I particularly like Shakespeare’s Hamlet and the Tempest, however I am not a fan of Romeo and Juliet.

I was never diagnosed as Autistic or as having Asperger’s in school. Teachers agreed that I was more subdued and focused on academics far more than socialising in class, but they never suggested that I may be on the Spectrum.

Some of them probably suspected, but to them I was just another slightly unusual yet relatively well behaved child in a sea of other children.

2. Speech problems

As mentioned in a previous post, unlike with Autism speech delay is not a common Asperger’s trait. It happens but rarely. Most people with Asperger’s start talking either at the usual age or even earlier and tend to have quite a wide vocabulary.

I, for instance, have often been referred to as a walking thesaurus which is something I actually took offense to as a child.

Children, as anyone who has been to school will know, can be cruel, are honest to a fault, they haven’t learned to keep their opinions to themselves yet, and they don’t like it when someone is clearly more intelligent then they are either.

My expansive vocabulary as a child was something that was definitely noticed and not always in a positive way – It was essentially just something else which made me different. And so for a while, I put considerable effort into not studying and not exploring the topics that I love, or reading the books which expanded my already considerable understanding of the English language in a desperate attempt to, for once in my life, blend in with my peers.

Speech problems for those with Asperger’s are more likely to concern how they speak.

Such as:

• With a monotone pitch
• Their rhythm may be slightly off
• They may have peculiar ways of saying selected words
• They may have an increased volume of vocabulary in comparison to the general population

What is most apparent with me is an increased volume in my speaking voice, especially when I am particularly passionate about the topic of conversation.

I tend to increase my volume and then drop it back down again, but I almost never realize that I’ve raised the volume of my voice until someone says to me:

“Shush you don’t need to shout.”

What is most frustrating is that I cannot lower the volume of my voice when I am overly excited about the topic at hand, and no matter how boring it may seem to others, I just have to tell them, even if they perceive that I am shouting at them.

Also, with my speaking rhythm, there has been many times when I have attempted to tell a joke and its fallen completely flat, because I just can’t get the rhythm right…

3. Delayed Motor Development

• Put your hand up if you hated sports at school! – { I raise my hand }
• Put your hand up if tying your shoes laces was a flipping pain for far longer than it really should’ve been! - {I raise my hand again}
• put your hand up if you have a mini panic attack everytime someone throws a ball or pen at you and says, “catch”. - {Yep, me raising my hand again}

My guess is that many of you out there that are reading this and are Autistic too have been raising your hand too as well as me!

In my defense, when it comes to asking me to catch i do always tell them that they’re just encouraging a disaster to happen.

So yes, delayed motor development was the bane of my existence during sports classes, but thankfully the teachers soon learned that it was better to allow me to read on the sidelines than force me to join in.

This was after me breaking down in numerous panic attacks, hiding in the changing rooms, accidentally-on-purpose forgetting my uniform numerous times over about a six month period in year 8, after which I never took part in sport again unless “I felt up to it”, or it was athletics (which is mostly a solo class) that didn’t require me to take part in any teamwork.

I am surprisingly good at tennis and badminton though… Hmm…Riddle me that!

Also, having poor Motor Skills alone, is not going to get you diagnosed with Asperger’s.

After all, a lot of people who are not on the Spectrum in any way at all may have poor motor skills. So while it is a trait, it’s a very minimal one which needs the additional traits along with it to the formally diagnosed.

4. Poor Social Skills

Ah. every Aspies Kryptonite – “Socialisation. Isn’t it horrible?” Society expects you to mingle with others but your brain is just screaming: “No!”

Boys are stereotypically expected to play sports, hang out in parks with friends and in later life perhaps go clubbing.

But the thing is, while girls can do all those things I mentioned that boys typically do. we’re not really expected to be the life of the party as much as they are. After all, it is simply not done according to societal rules. What is so disappointing is that, despite us moving forward in the feminist movement, people still gawk at outspoken women and loud party girls as though they’ve broken some kind of societal code.

I, of course, would never do either of those things, but that’s not because I think it’s an issue, but rather because I don’t like social situations of any kind, and I dislike them even more when I’m the center of attention.

Heck, I still blush when my mom introduces me to one of her work colleagues. It makes me feel like I’m five and I’m hiding behind her skirt again trying desperately to avoid eye contact with the probably quite nice lady she’s chatting with.

But the thing is us female are exceptionally good at wearing a mask or camouflaging our not so neurotypical traits. I’m not exactly sure how we do it, but I imagine it’s linked to how throughout history we’ve been told to sit down, be quiet and don’t express any of our opinions openly.

For centuries women were serving tea to men who were discussing all manner of topics, and even a simple suggestion or minor alternative view by any woman would have been seen as very un-feminine.

We’re expected to act in a certain normal social way.

Afterall so many radically contrasting views by men (and women) on what is considered to be normal have changed throughout history, but females have always been expected to be quieter, more subdued and yet still cheery.

Nowadays we tend to use something called social mimicry, which essentially means we are really good at copying others way of speaking and behavior. This gives us a way of blending in like we belong somewhere.

We do this because if we acted in our natural Autistic way, we would “stand out from the crowd” too much, or we be seen awkwardly sitting in a corner like a forgotten penny, which people definitely will take unwanted notice of, while prompts people to giving you that dreaded – “She seems out of place” sideways glances to.

But, let me tell you there is nothing more uncomfortable than social mimicry, especially because others do not understand the reason why we do it. As well, it is so very draining, confuses me in a way that make me feel like screaming: “Who am I really!”, because it’s utterly pointless trying to be something you are not.

I personally gave up going to parties just to appear normal in my first year of university, and I have felt so much better for it. I never went to any of the after parties for any shows. I tried on my graduation costume, even though I never actually went to graduation.

But, guess what! I don’t regret not going to the after parties, plus I didn’t wake up with a hangover, and I still graduated! So what if they just sent me everything in the post?

“But, the thing that is particularly hard for us is that people only take notice of the negative traits of Autism.”

for example…

“Poor social skills is probably the most noticeable trait of all.”

“It’s the inability to carry a conversation without going off on a tangent.”

“It’s the fact that we are always 100% honest that is both a virtue and a curse.”

“Neurotypical people are not used to total honesty and think we are being “brutally honest”, although that is never our intent.”

And when you combine those poor social skills with the fact that most of the original studies on Autism/Asperger’s were performed on males, it just makes it that much harder for girls on the Spectrum.

Girls are very good at masking, as unlike boys,we are taught from childhood on that society expects us to be more social, be more proper and formal, have more etiquette, and be more subdued that it only makes sense that we have fallen through the cracks in getting an early diagnosis.

Essentially females are really good actors, and society has told us that we have to be and act a certain way, therefore we put great effort into doing just what society expects of us. We spend our whole lives being taught that we must conform to that image, even though it often means suppressing a part of ourselves – On the Spectrum, but forced to hide our symptoms.

“Going unnoticed is both a somewhat positive and interesting trait at the same times to have.”

Unnoticed Things Like…

People on the Spectrum often don’t just have to deal with living in this world with just Autism or Asperger’s, but often also with other Mental Health Conditions as well, which are often a result of, and exacerbated by being on the Spectrum.

Common diagnoses found in people diagnosed with Autism are at a higher percentage then the general population, and as well, they are more likely as well to be diagnosed with Major Depressive Disorder (MDD ), Anxiety, ADHD, PTSD, and other Mental Health Conditions – With MDD and Anxiety topping the list. I have been diagnosed with both at different times since I entered high school.

When you combine the lack of education received by the majority in society regarding Autism, along with the difficulty many people on the Spectrum face when comprehending their own often overwhelming emotions and the innumerable Social Cues they are expected to understand, it is no surprise that many suffer from severe Anxiety and Depression.

The understandable nature of these facts however do not make them any less upsetting, and what makes them even more distressing is that studies, such as this one be the ¹Center for Disease Control and Prevention (CDC), show that in they year 2018. Although Suicide is the second most common cause of death for people between the ages of 10 and 34 people in the United States (Both Sexes, All Ages, & All Races).

Sadly, the mortality rate by suicide for the Autistic population is of serious concern. In “A 20‐year study of suicide death in a statewide autism population”, published by Wiley Research it was reported that:

² “Between 2013 and 2017, the cumulative incidence of suicide in the ASD population was 0.17%, which was significantly higher than in the non‐ASD population (0.11%; P < 0.05). During this period, this difference was driven by suicide among females with ASD; suicide risk in females with ASD was over three times higher than in females without ASD”

Sr. Paul H,Lipkin, MD, Associate Director Pediatrics at the Johns Hopkins University School of Medicine, and of Outpatient of Outpatient Services at the Kennedy Krieger Institute in Baltimore, Maryland. explains that:

“These children feel a normal range of emotions as other children, but [they] don’t do it in a typical way, and they’re not necessarily taken as seriously because they have a wide range of emotions showing already.”

While certain actions undertaken by those on the Spectrum would raise red flags in the general population such as self harming it is often assumed that someone on the Spectrum doesn’t self harm because they are depressed or suicidal but because they are incapable of processing their own emotions and therefore need an alternative outlet.

While it is sometimes true that processing emotions can lead to outbursts due to how overwhelming it is, such actions are to often dismissed without further treatment which leads to increased level of Depression and can eventually lead to Suicide.

It is frankly appalling that people have only just begun to notice the connection between Autism and Suicide rates with in the last decade, especially considering that the majority of Teenage Suicides are caused by bullying which is something that people on the Spectrum are especially vulnerable to, due to how difficult it is to recognise social queues and the comprehend the intentions of others as someone of the Spectrum.

I think i’ll stop this post here. l discussed five traits of Autism, but there are many other traits shared by those on the Spectrum. But the take-out of this story for all (myself included) is that:

• People with Autism/Asperger’s live with a perpetual sense of otherness in a world that finds it difficult to not only accept but understand anything that is remotely different from the norm.
• Females on the Spectrum especially struggle with this because not only are they different to the general population, but that the majority of research An Autism/Asperger’s rarely notices the existence of females with Autism. Getting help or even diagnosed as having Autism when you’re a female is near impossible, yes it has gotten gradually better in the last few decades but it is nowhere near where it should be.

Hope you all enjoyed my latest post,

If anyone has any comments, they will all be greatly appreciated. But, please remember to be kind when writing them, as people are easily hurt by words and I am no exception to this.

Also if there are any topics that anyone is interested in or wants information on please ask – These can be topics related to Autism, or most especially History (If any of you are interested… Just kidding! We all know it’s common knowledge that everyone knows that everyone else loves History. Why? Because, I do Silly! Plus, It’s like the Pizza of All Topics With All The Toppings !!)

Next, I will be posting about having a sister with Asperger’s/Autism. Hopefully my own sister will contribute a paragraph to that post as I think it would be interesting to see it from her point of view.

Best wishes and cuddles from my dog Millie to you all!!

Citations:

¹ Centers for Disease Control and Prevention (CDC).WISQARS. LEADING CAUSES OF DEATH VISUALIZATION TOOL Retrieved 23:49, November 28, 2020 from https://wisqars-viz.cdc.gov:8006/lcd/home

² National Center for Biotechnology Information (NCBI), a division of the National Library of Medicine (NLM) at the National Institutes of Health (NIH). Published by National Wiley Research. “a 20‐year study of suicide death in a statewide autism. population”; Authors: Anne V. Kirby, Amanda V. Bakian, Yue Zhang, Deborah A. Bilder, Brooks R. Keeshin, Hilary Coon. Autism Res. 2019 Apr; 12(4): 658–666. Published online 2019 Jan 21. doi: 10.1002/aur.2076. PMCID: PMC6457664. Retrieved 09:21, November 30, 2020