Interview on autism in women in ‘Goed Gevoel’ (English translation)

Not that long ago, only one in ten autism diagnoses was received by a woman. This ratio has been updated since, and today it is estimated that actually one in three autistic individuals is female. How come autistic women have stayed under the radar for so long? Can they suppress their symptoms so much better than men, or does autism express differently in women than in men?

Psychologist and neuroscientist Annabel Nijhof studies the social functioning of autistic individuals. She explains that there indeed seem to be differences in the brain, but that it is still very early days for this line of research. Nijhof: ‘The fact that the diagnosis usually comes much later for women also relates to societal expectations, and the stereotypical view that many people still have of autism. They will think of a man that has difficulty communicating and obsessively engages in specific interests like cars or trains. This can be the case, but definitely not always. Also the social issues are not the same for all people with autism. The autistic spectrum is broad, and expressions of autism are highly diverse. Additionally, rigid behavior is more easily accepted in men than in women, of whom it is expected that they are caring and social. Autistic women will develop mechanisms to show socially desirable behavior already from a young age, and thus force themselves for years. They learn to copy behaviors of others, and to camouflage their difficulties. They might succeed at this more often than men, but this costs a lot of energy, with a continuous feeling of being overstimulated as a consequence.’

What is striking, is that autistic women often get a different diagnosis first. Many will go through periods of depression, psychosis or anxiety. Annabel Nijhof confirms that there is a lot of overlap between autism and different conditions, such as ADHD. For all of these, certain structures in the brain will function differently than for other people. There is not one single identifiable cause: it often concerns a combination of many factors that thus also lead to a variety of symptoms. But what is absolutely certain, is that our society is not designed for autistic people. Especially in the social domain things are expected of them that they cannot always live up to. In time, this can lead to ‘autistic burnout’. Especially women that have forced themselves to compensate for their difficulties for a long time can sometimes crash badly. Without an autism diagnosis such a crash could be interpreted as a general depression. There is still a great lack of understanding, especially for women who function very well at first sight, and who outwardly appear like ‘nothing is wrong with them’.

A long-standing prejudice about autistic individuals is that they have little or no empathic ability. A great misconception, says Annabel Nijhof. ‘That’s an idea I would like to see disappear as quickly as possible. It is true that they can appear to be very rational, but by now it has been shown extensively that they can empathize with others’ emotions. Autistic people can have a strong sense of justice. They get very upset if others are treated unfairly and often stand up for marginalized groups in society. Presumably they actually have a lot of empathy, but experience certain emotions so strongly that they close themselves off to them. In my own research I found indications that they sometimes have difficulty distinguishing between themselves and others. They cannot always estimate their conversation partner well, but also their self-reflection is sometimes affected. In a conversation, this can lead to, for example, not realizing they are going on about the same topic for too long, or even to not always understanding their own wishes and intentions. In turn, this can lead to difficulties in relationships. Some things that other people find obvious, such as giving others comfort and approval, might not always come naturally to autistic individuals. This can lead to mutual misunderstanding. It definitely isn’t impossible to build up a good relationship, but it will need great levels of patience and understanding on both sides. There may be periods during which an autistic individual will need to ‘disconnect’, even from their loved ones. People wonder at times if there is a need for an autism diagnosis at a later age, but in relationships it can lead to more understanding. Thankfully there has been increased attention for autistic women recently, and the diagnosis is made earlier and earlier.’

Not that long ago, only one in ten autism diagnoses was received by a woman. This ratio has been updated since, and today it is estimated that actually one in three autistic individuals is female. How come autistic women have stayed under the radar for so long? Can they suppress their symptoms so much better than men, or does autism express differently in women than in men?

Psychologist and neuroscientist Annabel Nijhof studies the social functioning of autistic individuals. She explains that there indeed seem to be differences in the brain, but that it is still very early days for this line of research. Nijhof: ‘The fact that the diagnosis usually comes much later for women also relates to societal expectations, and the stereotypical view that many people still have of autism. They will think of a man that has difficulty communicating and obsessively engages in specific interests like cars or trains. This can be the case, but definitely not always. Also the social issues are not the same for all people with autism. The autistic spectrum is broad, and expressions of autism are highly diverse. Additionally, rigid behavior is more easily accepted in men than in women, of whom it is expected that they are caring and social. Autistic women will develop mechanisms to show socially desirable behavior already from a young age, and thus force themselves for years. They learn to copy behaviors of others, and to camouflage their difficulties. They might succeed at this more often than men, but this costs a lot of energy, with a continuous feeling of being overstimulated as a consequence.’

What is striking, is that autistic women often get a different diagnosis first. Many will go through periods of depression, psychosis or anxiety. Annabel Nijhof confirms that there is a lot of overlap between autism and different conditions, such as ADHD. For all of these, certain structures in the brain will function differently than for other people. There is not one single identifiable cause: it often concerns a combination of many factors that thus also lead to a variety of symptoms. But what is absolutely certain, is that our society is not designed for autistic people. Especially in the social domain things are expected of them that they cannot always live up to. In time, this can lead to ‘autistic burnout’. Especially women that have forced themselves to compensate for their difficulties for a long time can sometimes crash badly. Without an autism diagnosis such a crash could be interpreted as a general depression. There is still a great lack of understanding, especially for women who function very well at first sight, and who outwardly appear like ‘nothing is wrong with them’.

A long-standing prejudice about autistic individuals is that they have little or no empathic ability. A great misconception, says Annabel Nijhof. ‘That’s an idea I would like to see disappear as quickly as possible. It is true that they can appear to be very rational, but by now it has been shown extensively that they can empathize with others’ emotions. Autistic people can have a strong sense of justice. They get very upset if others are treated unfairly and often stand up for marginalized groups in society. Presumably they actually have a lot of empathy, but experience certain emotions so strongly that they close themselves off to them. In my own research I found indications that they sometimes have difficulty distinguishing between themselves and others. They cannot always estimate their conversation partner well, but also their self-reflection is sometimes affected. In a conversation, this can lead to, for example, not realizing they are going on about the same topic for too long, or even to not always understanding their own wishes and intentions. In turn, this can lead to difficulties in relationships. Some things that other people find obvious, such as giving others comfort and approval, might not always come naturally to autistic individuals. This can lead to mutual misunderstanding. It definitely isn’t impossible to build up a good relationship, but it will need great levels of patience and understanding on both sides. There may be periods during which an autistic individual will need to ‘disconnect’, even from their loved ones. People wonder at times if there is a need for an autism diagnosis at a later age, but in relationships it can lead to more understanding. Thankfully there has been increased attention for autistic women recently, and the diagnosis is made earlier and earlier.’

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