Category: Neurodiversity

Why are women less likely to be diagnosed?

For both ADHD and autism, the criteria for the disorders were formed based on observations of boys. Firstly, because in those days only boys attended school. Secondly, because boys had more externalised symptoms than girls: something that could be seen from the outside. Hyperactivity, banging their heads against the wall, not answering the doctor’s questions can be seen from the outside. But the internalised criteria (racing thoughts, inner restlessness, inability to relax) were merely not taken into account and were not known about. Girls have more internalised symptoms – it’s harder to notice those, and they are less taken into account in diagnosis.

There have been some great studies of underdiagnosis of girls in recent decades. For example, the same cases of children with ADHD were read to school teachers with both girls’ and boys’ names. Where there were boy’s names, the teachers expressed a desire to refer the child to a psychologist, while the ‘girl’ cases were ignored. Another neat study was on autistic children, where researchers followed 15,000 twins. With the same problems, boys were diagnosed much more often than girls (Francesca Happe and colleagues).

The lack of a correct diagnosis has consequences:

• Severely reduced self-esteem, even compared to men of the same neurotype
• Difficulties in work and relationships
• Increased risk of codependent relationships
• Risk of comorbid disorders
• Burnout and exhaustion from masking.

Features of ADHD in women

As mentioned above, there are more symptoms that are not visible to others. On the one hand, this is due to gender socialisation, women are more likely to be expected to suppress everything (you twitch inside and run in circles on the ceiling, but because of the habit of suppressing everything and sitting quietly, it is almost invisible from the outside). Or you get angry and boil inside, but you don’t express it on the outside). On the other hand, women are more likely to have the inattentive subtype of ADHD than the hyperactive subtype.

Women are more prone to comorbid anxiety and depression than men, so psychiatrists are more likely to attribute all women’s problems to anxiety and depression.

A tendency to perfectionism and comorbid obsessive-compulsive disorder can also complicate the diagnostic process.

Women with ADHD have fewer symptoms overall according to DSM criteria, but the same level of distress.

In addition, women tend to mask and suppress more, suffer more from emotion dysregulation, and the menstrual cycle also affects the manifestation of symptoms.

What ADHD in women may look like

• Difficulties with time management, although women often have more pressures and demands on them than men.
• Difficulties with organising themselves and the space around them.
• Frequent feelings of low mood (not to the point of depression, but along the lines of ‘I must be missing something’).
• A history of anxiety and depression.
• Difficulty managing money.
• Sensory overload (more common in women than men).
• Somatic complaints such as headaches, migraines, stomach aches and nausea (also due to sensory overload).
• Sleep problems.
• High-risk behaviour – speeding, extreme sports, etc.
• Tendency towards addictions.
• Hyperactivity often manifests as self-harm or skin picking, nail biting, lip biting, hair pulling. This is not done as a punishment, but because it is the only thing available.

Features of autism in women

Girls tend to have less stereotypical behaviour, less specific, noticeable interests than boys. They may be interested in the same Barbies and ponies as neurotypical girls, but the immersion of interest will be more profound and specialised. For example, an autistic girl may be just as interested in a teen series as a neurotypical girl. But an autistic girl is more likely to know everything about the characters but nothing about the plot, for example. And show little interest in talking about anything beyond that.

What can a woman be diagnosed with instead of ASD? If ADHD is present, the diagnosis favours ADHD because it is easier to observe. The chances of being diagnosed with OCD or an eating disorder are high. People with ASD are selective about what they eat and follow strict rules – hence the inference of restrictive behaviour and, for example, anorexia (which can actually be comorbid with autism).

What autism in women may look like

• A tendency to rely on other people to act and speak for you.
• Dependency and co-dependency in relationships – because it’s generally unclear what to do with the outside world, and it’s easier to adapt with the help of someone else. Where an autistic boy won’t do anything, a girl will cop out, try by imitation, ask others to do it for her.
• High sensory sensitivity.
• The presence of passionate but limited interests.
• Difficulty making and keeping friends.
• Conversation limited to a few topics of interest.
• A behaviour that appears outwardly shy, quiet and passive.
• Problems controlling emotions.
• High sensitivity to rejection.
• Presence of symptoms of anxiety and co-occurring disorders in general.

And lastly, about masking

Masking is common in both autistic and ADHD women. Women are good at adjusting to high demands, but adjusting doesn’t mean adapting. Adaptation is exactly what doesn’t happen. A woman who is forced to participate in small talk at work doesn’t hate it any less, but she sees that others approve of her participation and suppresses her natural desire to leave immediately. And she can feign interest in colleagues’ holidays so well that others have no idea.

You may have guessed how much effort it takes to constantly check yourself and worry about the outcome. This leads to burnout, exhaustion, depression and relapse of all that can relapse.

This is why working on masking is as important a goal in therapy as, for example, working on sensory sensitivity.

A stable self-image helps us to recognise more quickly and accurately what is important to us in the moment. It is the basis for self-confidence in difficult situations and helps us not to be destroyed by criticism or the stresses of life. It is the basis for a healthy self-esteem and the foundation for inner stability. An understanding of one’s self helps us to communicate with others and improves the quality of our lives.

What are the characteristics of the self-concept of autistic people?

Challenges of transitions

Autistic people have a much harder time with change than neurotypical people. And adolescence is probably the biggest change in a person’s life. Society, demands and the body change. At the same time, it is the time when the foundations of your own identity are being laid. Autistic people often face bullying, feelings of social inadequacy, social isolation and negative judgements from others during this time.

When everyone around you tells you how stupid, weird and wrong you are, it affects how you see yourself. As a result, many people with autism have a negative self-image.

Social challenges

Problems with understanding social interaction are the key symptom of ASD. They affect the way we perceive ourselves in many ways. 

1. Our self-image is largely shaped by our experiences of interacting with people around us, and if these experiences are often perceived as unsuccessful, then it is more difficult to build a self-image in general, and it is particularly difficult to build a positive self-image. 
2. Research shows that the higher the intelligence of autistic people, the higher the level of perceived social incompetence. And this incompetence is not always objectively confirmed (i.e. people around them see the situation differently). And the higher the level of perceived social incompetence, the less confidence they have in themselves to judge what is happening (“I am socially incompetent!”) and the more confidence they have in others. So autistic people may rely more on the feedback and judgements of others (because they understand better, they see better) and less on themselves in determining who they are. 
3. A lack of understanding of social interactions may prevent them from understanding their problems with social interaction. At some level, a lack of understanding of socialisation reduces the ability to recognise that there is a fundamental problem. For example, autistic people may perceive themselves very differently from how others around them perceive them. And if there is no understanding of the problem, there is no way to change things. 
4. For people with ASD, social life and interaction with others play a smaller role in their self-image than for neurotypical people. When describing their identity, autistic people talk less about social roles and relationships and more about what they normally do in life (knitting, hiking, working). 
5. It is also thought that feelings of social inadequacy have a negative impact on perceptions of agency – the ability to influence one’s own life.

Difficulties with abstract thinking

Self-perception is to a large extent made up of abstract concepts. This means that not only do you need to understand what ‘introvert’, ‘feminine’ and ‘open-minded’ mean, but you also need to be able to try out such categories on yourself (crazy, yes). So many autistic people may 

1. Lack the words to describe their identity
2. Not have the ability or skill to relate such words to their own experiences. 

For autistic people it is particularly difficult to think abstractly about people.

Understanding mathematical concepts can be much easier than describing the personality traits of the person you are talking to. This is because mathematics has logic and concrete meaning, while these traits have only metaphors and vague feelings.

In particular, it is associated, for example, with the prevalence of gender dysphoria in people with ASD. Finally, gender is no less a simple social construct than phlegmatism. Firstly, it is not clear how to apply it to oneself, and secondly, it is not clear why to do so in the first place.

Difficulties with abstract, fuzzy ideas make it very difficult to form a self.

Rigid, black-and-white thinking

Rigid, inflexible thinking, problems with adapting beliefs to changing conditions mean that self-image can also be rather black and white, rigid and with little inherent potential for change.

Masking

Masking is what people with autism do in order to mimic society and be in line with expectations. There are many different problems with masking (to start with burnout), but in particular it interferes with the formation and maintenance of a sense of self. People who mask a lot tend to think that they have no identity – just a set of roles. Changing roles prevents the stability of the sense of self, it becomes contextual and therefore highly variable and fragmented. These fragments are usually taken from the personalities of the people around you with whom you want to bond and from whom you need acceptance.

And here’s another sad thought: if you think you need to disguise yourself, you’re signing up to not accepting who you are.

Alexithymia

We form our identity by observing our thoughts, behaviours and emotional responses. Without the ability to name our feelings, we have limited ability to analyse them.

Opinion on autism

For people diagnosed with autism, perceptions of autism contribute significantly to self-image. The more positive the perception of autism (more focus on benefits and less sense of helplessness), the higher the self-esteem and the better the self-image. Typically, those who tend to think better of themselves associate autism with giftedness, emotional stability and strength. In general, the more good autistic people find in autism, the more good they find in themselves.

Analytical mind

The mind and nervous system of autistic people are organised in such a way that we think analytically, piecing together the big picture piece by piece, not on the basis of intuition and fragmentary ideas, but on the basis of deep, unhurried analysis and logic. And the love of being alone provides plenty of time and opportunity for such introspection. So there is enormous potential for people with ASD to understand their own internal machinery with awareness and sensitivity.

Ideas on how to help yourself develop a sense of identity

Development of a theory of mind

Developing the ability to understand other people’s thoughts and feelings can help you understand yourself better. Social skills training can help with this, or simply regular and careful self-analysis of what is going on in communication and asking for feedback from other participants to check.

Expanding the vocabulary of personality trait terms

The development of a more varied vocabulary for the description of one’s own identity will help to shape it more clearly.

Developing emotional competence

The better you can understand and describe emotions, the more material you have to analyse and build your self-image. You can learn emotional literacy by keeping an emotional diary, for example.

Avoiding masking

Trying to imitate others and creating false identities has a negative impact on self-understanding. It is therefore important to work on finding your own authentic responses to the outside world gradually, gently and in a safe environment.

Developing awareness in general

The better you are at noticing your own thoughts and emotions and how they relate to your behaviour, the more you can draw conclusions about who you really are. Bottom line: meditation works, as do informal mindfulness practices.

Attention deficit hyperactivity disorder (ADHD) is one of the most common mental disorders in children, but it also affects adults. Symptoms include difficulty concentrating and staying on task, hyperactivity and problems with impulse control. ADHD is a chronic and debilitating condition. It affects many aspects of a person’s life, including academic and career success, relationships and daily life.

Research into strengths in people with ADHD is a very new area of research and there are few papers on it, but those that are available are very interesting. It’s important to note that having strengths does not diminish or erase the problems and difficulties people with ADHD face. Just because people with ADHD are particularly good in some areas of life does not mean that they do not have difficulties and do not need treatment.

Is it really necessary to talk about strengths?

There are several reasons why talking about the positive aspects is just as important as talking about the negative ones:

• Not everyone is aware of their strengths. And this is crucial knowledge, both for self-esteem and for finding the right fit in life. 
• Understanding the strengths of people with ADHD is necessary for those around them: the more educators and HR professionals know about them, the more likely they are to treat them appropriately. 
• It also helps to de-stigmatise the condition.

Creativity, vibrancy and open-mindedness

Dutch scientist Martine Hoogman and her team are actively researching strengths in ADHD. Most of the research has been done on adults, and the participants have mostly been employed people in treatment. However, the number of strengths listed by each individual participant was independent of employment status and the presence of treatment. 

Interestingly, the lists of positive traits were similar for male and female participants, but women mentioned more traits about adventurousness and risk-taking, while men mentioned more traits about humanism.

All the strengths mentioned in the study fell into five main clusters:

1. Creativity (most commonly mentioned): this includes imagination, resourcefulness, associative thinking and the ability to see non-obvious patterns. There are types of creative tasks that people with ADHD do particularly well. These include creative writing, visual arts and humour.  

2. Being dynamic (second most popular): this included traits such as being energetic, active, enthusiastic, having an ‘inner motor’, a positive attitude and a tendency to seek novelty. 

3. Flexibility: the cluster about spontaneity, openness, impulsiveness, a wide range of interests, ease in switching between tasks. 

4. Social-affective skills – empathy, communication skills, humour, supportiveness, intuitiveness, sensitivity, commitment, fairness.

5. High level cognitive skills – attention span, multitasking, quick thinking, good memory, hyperfocus (ability to concentrate deeply on one thing), analytical thinking. If you suspected there was something odd about this cluster, you wouldn’t be wrong: many of the items mentioned (memory and attention, for example) are things that people with ADHD tend to struggle with. There is no clear answer as to why the same items fell into the strengths cluster. We could speculate that memory and attention problems only occur in some contexts and not in others, or only in some people, or – this could also be the case – the participants in the study were talking about wishful thinking rather than reality. 

The participants also noted that some of the strengths were not related to the specificity of ADHD, but rather to the difficulties of living with it (having to persevere and learning to be more open-minded about different people).

Conclusion

An important factor related to the expression of positive traits is the severity of a person’s ADHD symptoms. Research has shown that the more severe the symptoms, the less people mention enthusiasm, perseverance, willingness to get involved and social skills. This is not surprising: when life is hard, there is less desire to socialise and be active. Hyperfocus, on the other hand, becomes even more hyperfocused as symptoms worsen. 

It’s important to note that these studies are still quite small, and there aren’t many of them yet. In the past, thinking about strengths in people with psychiatric and neurodevelopmental conditions was not common.

It’s also worth adding again that having strengths does not mean that symptoms are absent or ‘unimportant’, nor does it negate the difficulties and suffering that people with ADHD face. 

Further reading

Here are some studies to read if you want to explore this further (including one on strengths in autism!):

1. Editorial: Looking at it from a different angle: Positive aspects and strengths associated with neurodevelopmental disorders
2. A qualitative and quantitative study of self-reported positive characteristics of individuals with ADHD
3. Characterizing Creative Thinking and Creative Achievements in Relation to Symptoms of Attention-Deficit/Hyperactivity Disorder and Autism Spectrum Disorder

Everyone seems to know that autistic people don’t like to make eye contact and somehow don’t socialise much. Some people, moreover, know the “official” symptoms of autism – the ones that determine the diagnosis. And only the most meticulous and curious (and also autistic people themselves) know what else there is: 

• Non-obvious implications of the “official” symptoms, sometimes very unexpected ones
• Symptoms, traits and syndromes that are not part of the main symptoms, but are still directly related to ASD.
• Personal observations by autistic people themselves – those likely manifestations of ASD that scientists have not yet reached, but which are talked about at the level of personal stories and generalised experience. 

I try to balance my texts between research and people’s personal experiences, so I’ll tell you about them all in turn!

Basic package

The “official” definition of autism (I refer to ICD-11) consists of just two symptoms – broad, rather vague and with a lot of implications: 

• Problems with social interaction (difficulty reading and responding to non-verbal cues, problems understanding and responding to social context, etc.)
• Repetitive, rigid patterns of behaviour, interests and activities (repetitive movements, rigid thinking, difficulty adapting to new things, rigid routines, preoccupation with rules and rituals, and sensory sensitivities are all included). 

These two criteria determine the diagnosis. The ICD also lists some symptoms and other disorders that are common in autistic people but are not necessary for a diagnosis. These include 

• Intellectual disability
• Disorders of speech and language development
• Developmental delays 
• The presence of anxiety and depressive disorders (and generally a high number of co-occurring mental disorders)
• Self-injurious behaviour (such as banging one’s head on something)
• Epilepsy and non-epileptic seizures
• Catatonia (a condition in which a person has little or no response to the outside world)
• Tuberous sclerosis (a rare genetic disorder that causes benign tumours)
• Chromosomal and genetic abnormalities
• Cerebral palsy (a group of disorders that affect movement and balance)
• Neurofibromatosis (another genetic disorder that leads to the development of tumours).

Unexpected consequences

The two main ‘symptoms’ of ASD are actually so overarching that they can have a myriad of manifestations. Some are better known than others. Here are the ones that may not be obvious:

• Sensory sensitivity is not necessarily oversensitivity. A person may just as well have low sensitivity to some sensory stimuli and be in search of additional sensory stimulation. There are autistic people who like spicy food, heavy music concerts and raves with flashbulbs. There are also those who can’t tolerate any of this. 
• Humans have not 5 but 8 senses: hearing, sight, smell, touch and taste, plus vestibular (sense of movement in space), proprioception (sense of the body in space) and interoception (sensations inside the body). The last three can also be hyper- or hyposensitive and can manifest unexpectedly. For example, dehydration can often occur in autistic people simply because thirst is something that should still be felt. Nausea from transport can last a lifetime because the vestibular system is too sensitive. Constant collisions with objects, furniture and doors are due to proprioception not working as it does in neurotypicals. 
• Difficulties in reading facial expressions and voice intonation can lead to two opposite manifestations: either a lack of facial expressions and weak intonation of speech in autistic individuals, or conversely, exaggerated facial expressions and vivid (but possibly inappropriate for listeners) intonation. This may be the same reason why people with hearing loss speak loudly: if you can’t hear yourself, you feel you have to work harder to make others hear you. If you feel that facial expressions are difficult to read, you may want to make it easier for others and convey the expression accurately. 
• Repetitive behaviours include echolalia and echopraxia. The former is the repetition of sounds and words after other people, film characters and singers, and the latter is the mirroring of body positions, which can also feel almost involuntary. 
• Among anxiety disorders, autistic people are more likely than neurotypicals to have selective mutism, a condition in which a person is unable to speak at certain times.

Little-known symptoms

One big problem with autism is that descriptions of symptoms, traits, states, and specifics are generally handled by people without autism.

Many of the symptoms of autism are things for which there often seem to be no words. There is no language that can adequately describe the experience of living with one type of nervous system to people with another type of nervous system.

You can’t just go to people and say: “I find it very disgusting to wear socks for some reason”. Those kinds of observations don’t generalise well and are rarely taken seriously by anyone. That’s why we have what we have: 

• Ideas about symptoms and related disorders that have made their way from clinical observations by psychologists and psychiatrists into studies, and scientists have concluded for sure that yes, these conditions are indeed related to autism (but it’s not for sure because almost everywhere there is minimal sampling and so-so study design). 
• Lots of everyday observations by autistic people themselves (yes, including the one about socks!) that no one has really studied in any special way.

Let’s talk about both in turn. Let’s start with the symptoms, disorders and characteristics that are most likely to be associated with autism – and which have been studied.

• Gastrointestinal disorders. People with ASD often have GI disorders, including pain, diarrhoea and constipation, and heartburn. 
• As adults, there are higher risks of obesity, hypertension (i.e., high blood pressure), and diabetes. 
• Sleep problems. Many people with autism suffer from sleep disturbances. These can include difficulty laying down and falling asleep; repeated awakenings throughout the night; and difficulty returning to sleep after waking up.
• One in five autistic people suffer from alexithymia. People with alexithymia have difficulty recognising, understanding and describing emotions.
• Difficulty regulating emotions. Strong emotions that are hard to regulate are more common in autistic people than in neurotypicals. 
• Where there are strong emotions, there is often impulsive behaviour. This is also common in autistic people – it is also associated with sensory sensitivities and impaired executive functions. 
• Although synesthesia (the perception of signals from one sensory organ as signals from another) is not specific to autism, it is quite common in autistic people. Especially the form in which tactile sensations occur without physically touching the person. For example, looking at something can cause tactile sensations.
• Problems with posture, different types of unusual gait (e.g. bouncy gait), coordination difficulties are also associated with ASD, and the neuroprocesses behind it are only just being studied. 
• Hyperlexia – unexpectedly advanced reading skills in children, far beyond what was expected at their age – is also common in autism.
• A propensity for food allergies. About 11% of children with autism in one study were diagnosed with food allergies, compared to 4% of neurotypical children with food allergies.
• A predisposition to joint hypermobility (this is a connective tissue disorder in which the ligaments are weaker and therefore the joints bend more than normal)
• Menstrual cycle problems. Recent studies have shown that women with autism spectrum disorders are more likely to have problems such as irregular periods, unusually painful periods, and heavy menstrual bleeding.
• Postural orthostatic tachycardia (this is when your heart rate increases abnormally after lying down and sitting or standing up, and there is evidence that it is also more common in autistic people).

Personal experiences

And finally, the last part is about personal observations of people with autism that they have shared (publicly, on Reddit). These are not research findings or even symptoms, but private stories from autistic people about what of their behaviours they think might also be related to autism. Perhaps some of this will be studied and described in articles in the future (and then it will go on one of the lists above). So! 

• A strange, atypical or fluctuating accent
• Walking on your toes (not because it doesn’t work otherwise, but because it’s so much more comfortable-pleasant-better).
• Belonging to fandoms
• Hating drinking water.
• Breathing through an open mouth.
• Sitting in weird twisted poses
• Looking down when walking
• Uncomfortable walking ahead of other people, leading them
• Voice is either too loud or too quiet
• Unwillingness to wear socks (or unwillingness to live without them even a little bit)
• Fear of losing balance
• Hands against the chest all the time, aka raptor hands.

Autism has existed in nature throughout human history. By the measure of that history, even humanity as a whole has only recently begun to pay attention to how people are mentally organised. Figuring out how people who are different from the majority are organised is a huge task for the future. And it seems that in the case of autism, we are only at the very beginning of this journey. And if so, I would like to believe that at some point, individual observations made by specific people about their experiences will be taken seriously, studied, and will make more sense. And will help different people to better understand and respect each other’s needs (you have to believe in something, right?).