Empowering neurodivergent people through understanding and conversation
Women’s Health Week 2024: Unrecognised Autism
In order for a person to be confirmed as autistic (by a medical professional, opposed to self-identifying alone) they need to meet certain criteria as outlined in the DSM-V (Diagnostic and Statistical Manual of Mental Illnesses). While some paediatricians might offer a “diagnosis” of autism without using formal tests, they will usually still be using the DSM-V criteria as their benchmark. Unfortunately, the DSM-V definition is of a very narrow field of traits and presentations of autism, and does not accurately describe many autistic people. What the DSM-V depicts as autistic is a largely stereotypical, male-centric viewpoint. As it is Women’s Health Week, I thought this was a good opportunity to discuss how autism can present outside of the DSM-V criteria, especially in girls and women.
The DSM-V Version… and Why It Might Not Suit Women
The DSM lists five (5) criteria that must be met in order for a person to be confirmed as autistic. In brief, they are:
1.
“Persistent deficits in social communication and social interactions across multiple contexts”
This can include “deficits” (DSM terminology, definitely not MTQ’s!) in:
- social-emotional reciprocity
- regular back-and-forth conversation
- sharing of interests or emotions
- ability to initiate or respond to social interactions
- verbal and nonverbal communication
- normal eye contact and body language
- understanding and using gestures
- using facial expressions
- developing, maintaining, and understanding relationships
- sharing imaginative play
- making friends
- showing interest in peers
It also includes the rather ridiculous “abnormal social approach” as something to gauge, implying that all allistic people have one way of socialising. This certainly isn’t my experience because they’re, you know, human! They have personalities and feelings and likes/dislikes and interests…
2.
“Restricted, repetitive patterns of behaviour, interests, or activities, as manifested by at least two of the following, currently or by history:
- Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
- Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).”
3.
“Symptoms must be present in the early development period (but may not become fully manifest until social demands exceed limited capacities or may be marked by learned strategies in later life)”
Keep in mind here the clear message that the symptoms must be present, despite an acknowledgement that living in an accomodating environment, or that being good at masking or using coping strategies hides them.
4.
“Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning”
Be aware that as the first criteria insists on presentation in at least two environments, “significant impairment” only in the home environment is usually not sufficient to meet this criteria.
5.
“These disturbances are not better explained by intellectual disability or global development delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.”
This criteria ignores that many autistic people have spiky profiles, including the ability to have exceptional skills, or “normal” skills in various areas. As such a 10 year old autistic person with an intellectual disability placing them at a development level of a 5 year old, who communicates like a 5 year old would, would not meet this criteria; even if they communicate like a 5 year old because they are masking this aspect of their autism, or the areas of their social communication impacted by their intellectual disability are the same areas affected by being autistic.
Why This Doesn’t Always Work for Girls (and Boys!)
If we go through each of these criteria, we can see why so many autistic people – particularly girls (and women) – aren’t confirmed as autistic, or have to pursue confirmation for much longer than people with the stereotypical presentation of autism.
1.
“Persistent deficits in social communication…”
The really tricky thing about this criteria is that presentation must be clinically significant in two separate environments.
Many autistic people, especially girls, mask and camouflage. Many of these people have a safe space (often home) where they allow themselves to be authentic, largely because masking all the time is exhausting. This means parents frequently experience the Coke Bottle Effect after school, for example, but when reaching out to teachers for help are told their child is perfectly regulated and easy going at school.
Like allistic people, many autistic kids will feign interest in the latest fad or trend in the playground, in order to fit in.
When it comes to adolescence, which is often when unconfirmed autistic peolpe really begin to struggle, lack of eye contact, inconsistent friendship groups, grunting instead of using words, apparent disinterest in conversation, and a perceived lack of empathy, are frequently seen as “typical teenager behaviour”.
Particularly when it comes to teenaged girls, becoming antisocial, withdrawn, depressed, uncommunicative, emotional, and experiencing frequent conflict with peers, is often diagnosed by medical professionals as depression, anxiety, or a presentation of hormonal changes. This can result in prescription of anti-depressants, anti-anxiety medications, and the Pill. It does not address, let alone resolve, the underlying problem, and can even lead to further dysregulation.
Furthermore, while the DSM-V criteria depicts autistic communication as being a deficit, it is increasingly perceived as a difference. This means that frequently autistic – and people with other neurodivergencies – are perfectly happy with each other’s communication, so “deficits” aren’t noticed.
2.
“Restricted, repetitive patterns of behaviour, interests, or activities…”
A teenager who gets up at the same time every morning, has a piece of toast with peanut butter and a glass of orange juice for breakfast, puts on their school uniform and favourite baseball cap, brushes their teeth and puts their hair in a ponytail, makes their bed, goes to school, goes to their timetabled classes, buys a pie and a chocolate milk for lunch, comes home and practises flute for half an hour, does homework and studies until dinner, sits in the same seat at the dinner table each night, clears their plates afterwards, watches the next episode of the TV series they’re currently into, goes up to their room and listens to their favourite band, has a shower, and goes to bed… they sound like a bit of a dream to most adolescence-fearing parents, right?
This presentation alone could meet the criteria for autism, provided it was communicated in a particular way. As the definition discusses “abnormal intensity” of interests, how many times can a teenager listen to the same album without it being “normal”? Without in depth questioning that doesn’t appear in any of the standard assessments questionnaires, how can a psychology determine the difference between an autistic tween’s experience of listening to Taylor Swift on repeat, or that of an allistic Swiftie? Just because it looks the same, doesn’t mean it feels the same.
Similarly, and this one was a big surprise to me when I learned it about myself, sensory profiles can be bipolar. And as most assessments ask you to rate questions using scales like “Never, rarely, sometimes, usually, and always”, if a person is both hyper- and hypo- sensitive to sensory input, their answer is usually going to be a pretty standard “sometimes” to most questions in this area. Which results in a failure to recognise autistic sensitivity.
3.
“Symptoms must be present in the early development period (but may not become fully manifest until social demands exceed limited capacities or may be marked by learned strategies in later life)”
How many times have you heard people talking about young people saying things like, “Oh, she’s just shy,” or “Man, three year old boys are NUTS!” or “She’s such a fussy eater.”? Or sharing “Reasons why my preschooler is angry with me” including things like sandwiches being cut in the wrong shape, or cups being the wrong colour.
Or parents who admit to visitors that the way they do something at home is possibly “a bit weird” but that it works for their family, or their child, so it’s no big deal. If demands are reduced, and an autistic person’s differences are accommodated or accepted, that little moment of “they look autistic” doesn’t always happen.
Combine this in early years, with the aforementioned fact that many autistic people are great chameleons, often for extended periods of time, in school, the workplace, social groups, etc… and you can easily have an autistic person unrecognised until they break.
4.
“Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning”
What if you find your people?
If your family is neurodivergent (whether they know it or not), your child experiences that magical invisible neurodivergence magnet and finds themselves hanging out with like-minded kin, or they find a job that works perfectly with the profile and interests and glimmers… there’s not going to be much in the way of perceived impairment.
Combine this with a natural ability to mask, to camouflage, to adopt strategies and techniques that accommodate differences, living in a community that is diverse and meets individuals’ needs, and this criteria can be completely overlooked.
5.
“These disturbances are not better explained by intellectual disability or global development delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.”
While this criteria does attempt to factor in co-occurring conditions, it doesn’t do so effectively enough to avoid ruling out many autistic people. The vast majority of autistic people have another neurodivergence, health condition, or disability. Assuming all autistic traits that CAN be explained by the other neurotype or condition ARE explained by that condition is ridiculous. If a person was swimming in a lake, and it started raining, it would be silly to say that none of the moisture on them would be from the rain falling from the sky, because the fact they’re wet can be explained by the fact they’ve been swimming in a lake. Yes, it CAN be explained by that, but it doesn’t prove it.
Hyperactivity can be explained by ADHD, but as an ADHDer who has their med levels at an ideal level, I can assure you that removing the ADHD-hyperactivity has not removed my ability to hyperfocus, my obsession with my glimmers, the fact I run around like a headless chicken when I’m in “cleaning mode”, or any sensory hyperactivity. But using the criteria above, many medical professionals would diagnose ADHD and rule out autism.
Show Me An Autistic Girl
So if you have a kid who is often called “quirky”. If your child has “massive tantrums” when you tell them their favourite shirt is still wet from the washing machine so they’ll need to wear something else. When they can’t possibly go to bed until they find their favourite stuffed toy. If the dietician says your “fussy eater” will try something provided you put it on their plate up to ten times, and you kid has been proving that dietician wrong for years. When they’ve been diagnosed with one thing, but it doesn’t explain all the traits.
When your kid can’t find a peer group.
Seems depressed but isn’t responding well to treatment.
Seems bossy or controlling about things, and has a reputation for being “a bit particular”.
Gets very emotional over things that seem silly to others.
Has quirky friends.
Is a perfectionist.
Fiddles with bracelets or other jewellery a lot.
Tends to order the same thing at every cafe, or want to go to the same cafe every time.
Seems to jump from super-capable to super-needy a lot.
Can’t tie their shoelaces, finds it hard to read an analogue clock, shudders if they rub velvet against the grain, cuts the tags out of their shirts, has a new intense hobby on a regular basis, frequently doesn’t finish projects they were invested in at the start…
Have a think if they might meet the criteria for autism.
Why Pursue It?
If your child isn’t struggling badly, is there any reason to pursue confirmation of neurodivergence?
Most late-diagnosed women, even those who have successful professional careers, their own families, friends, and a generally happy life, share that confirmation has given them self-compassion and self-forgiveness. That they have been fighting hard all their lives to fit in, and have never felt good enough. That they experience imposter syndrome and low self-esteem. Some have tolerated abusive relationships because they assume it’s the best they’re worthy of or capable of finding. Others have breakdowns or mental health problems due to the stress and exhaustion of masking, and having to work harder than many allistic people to achieve the same outcome.
Allowing your child the ability to understand themselves – especially why some things are hard, or exhausting, or why they mightn’t be interested in something it seems like everyone else is – is a gift that will serve them forever.
I remember one of the reasons I was misdiagnosed with depression as a teenager was because I was asked something along the lines of “So you say you watch Dawson’s Creek with your friends at boarding school every week. Do you feel you get the same enjoyment as your friends out of this as they do?” The answer was that I really didn’t feel that at all, and that I really wished I did! To the psychiatrist, that meant I wasn’t getting adequate enjoyment out of things that teenage girls get enjoyment out of, therefore was depressed. Turns out Dawson’s Creek really isn’t my show, and I would’ve been much happier had I known Freaks and Geeks existed at the time.
Where to Get Help
If you are starting to wonder if this does describe your child, even if a medical professional has already told you it doesn’t, talk to your GP again and explain your thoughts. And if you don’t get the support you deserve, contact More Than Quirky and we’ll see how we can help you get there instead.
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