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Recognising and Understanding Autistic Girls* at School

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Recognising and Understanding Autistic Girls* at School

Most children referred for a diagnostic assessment for autism are males, and autistic males with fluent speech will likely be diagnosed, on average, by the time they are 8 years old. Autistic girls, by contrast, ‘fly under the radar’ and tend to be diagnosed during their teenage or adult years . In a recent research study, the male-to-female ratio of autism was 1:4. in 4–10-year-olds, leaping to 1:2. in adult women (Posserud et al, 2021). Our own clinical records for diagnostic assessments show the same pattern, , Thus, young autistic girls and teenagers are not being identified , and so they are missing out on valuable, accurate and timely understanding and support. This article discusses how to recognise their profile at school.

Why do Autistic Girls often Fly Under the Radar?

Many autistic girls remain undiscovered because the signs of autism are less obvious than they are with boys. Why is this the case? In autism, understanding the social world does not happen innately or intuitively. Autistic children and adolescents cope with this difficulty in different ways. One strategy is to use ‘camouflaging’ to hide autistic characteristics. To successfully camouflage, the person will watch others closely to understand how to act and what to say in social situations. They will imitate others, develop scripts, practise at home, and adopt masks and personas to be able to manage social situations. Research suggests that autistic females camouflage more than males, and they camouflage to fit in socially at school and avoid being bullied (Cook et al, 2021).
Also, some autistic girls can be more motivated than autistic boys to conform and to fit in socially at school and are likely to be well -behaved, less disruptive, and so less likely to be noticed. They may have learned that if they are good, they will be left alone and if they are quiet, no one will see them, making it less likely they will come to the attention of their teachers.
Informed parents may consider that their daughter is autistic, but if the profile is not apparent either in the clinic during the diagnostic assessment, or at school, she is likely not to be diagnosed as being autistic. Additionally, teachers will not approach parents with concern that a girl may be autistic if they do not pick up the profile in the classroom. Research shows that autistic women often receive mental health diagnoses prior to a diagnosis of autism (Hamdani et al, 2023).

What to Know about Autistic Girls

Every autistic girl is unique, and her needs will be reflected differently. School staff should be cautious not to run the risk of overgeneralising since autistic students can be as different from each other as any other students. Despite this, there is a recognisable profile of autism in girls that we will describe here with the hope that increased recognition will lead to earlier support and understanding.

Unlike most autistic boys, girls are more likely to be able to accurately interpret and answer questions about social interactions, social situations, and friendship. However, their responses may not come naturally or as quickly, making it difficult for them to keep up in group settings or with the conversation of many non-autistic girls. They may discover that boys are more like-minded friends since their friendship dynamics may be perceived as being easier to understand. 

Rule Driven

Autistic girls are likely to strictly adhere to classroom rules and routines, these can be other’s rules and routines or their own. From an early age, autistic girls have applied their cognitive skills to analyse social interactions, and so they are much more likely than autistic boys to discuss the inconsistencies of social conventions and to be enforcers of social justice (e.g. fairness). If they are strongly motivated to abide by the classroom rules and also have a tendency to be shy, naïve and unassuming, they can easily be missed in a classroom of boisterous children. Autistic girls can also be very hesitant to ask for help for fear of drawing attention and strong perfectionism where she doesn’t want to get things wrong or be seen as ‘silly’ by teachers or peers. 

Strong Interests

Because autistic girls may focus much of their intellectual energy on learning about their social world, their interests often centre on social topics, such as animals, especially cats and horses, psychology, friends, a particular person, including celebrities, also literature and fantasy. It is not so much the topic that differs from non-autistic girls; rather, it is the intensity of their interest. Often, she will have a rich imaginary world where she may engage in elaborate doll play using a script to re-enact real events, which may help decode social situations. Their tendency to follow scripts and their difficulties with social reciprocity may put them at odds with peers who may not want to follow her script and find her too controlling. She will not easily read social cues to know what to do, or to know how to predict people’s behaviour. Thus, autistic girls may have trouble recognising and managing conflict, affecting their ability to repair and maintain friendships.

High Levels of Anxiety

Despite their frequently better coping mechanism and ability to camouflage their social difficulties, these social difficulties are very real and cause enormous stress and confusion. The social challenges and sensory difficulties experienced by autistic girls can have a significant impact on their wellbeing, leading to high levels of anxiety in the classroom and playground. Signs of high anxiety at school include:

  • school avoidance and refusal, choosing to visit the school health centre frequently.
  • becoming overwhelmed (going quiet) in social situations; appearing shy.
  • being reluctant to participate in class activities.
  • being unable to communicate verbally (situational mutism).
  • feeling they are consistently judged negatively by their peers.
  • withdrawal from social interaction and sitting in the library at lunchtime instead.
  • somatic complaints including low energy, headache, stomach-ache, chest pain and tiredness.

Dr Jekyl and Mr Hyde

Due to camouflaging, the autistic girl’s socialising appears normative to non-autistic girls and teachers, and she can successfully ‘keep it together’ at school. An autistic girl may be able to do such a great job at wearing the mask and fitting in that nobody apart from her parents would believe she is autistic. However, the toll that this effort takes on her energy levels and emotions is high. Girls will often come home feeling exhausted, irritable, and overly emotional. She can ‘meltdown’ or ‘shutdown’ the moment she is out of the school situation and parents are at a loss as to how to assist their daughter, where afternoons after school are characterised by tears, tantrums, “rude behaviour,” social avoidance, and arguments. It is not uncommon for parents to experience blame from professionals because the visible challenges occur only in the home situation.

The Profile of the Autistic Girl in the Classroom

Below is an outline of some of the common difficulties autistic girls face at school to assist teachers to recognise the profile:

  • May appear shy, rude, lazy or ‘odd.’ 
  • May have slower information processing for social and emotional information, resulting in a time delay in their responses.
  • Shows difficulty putting their thoughts and feelings into words and difficulty expressing their wants and needs.
  • Has executive function challenges, for e.g. difficulties with planning and organising their time, belongings and behaviour.
  • Has sensory issues, e.g. for bright lights, certain noises, odours such as perfume. These may not be overtly apparent due to masking.
  • Social difficulties are apparent in subtle ways, for e.g. dislikes group projects, will not ask for help, goes to the library at lunchtime, does not have a best friend or only has one friend and is lost if that friend is not at school or moves between groups of friends but does not seem to belong to one group, prefers boys as friends.
  • Seems more stressed during transitions between classes and at the start and end of the day. 
  • Is overly reactive for seemingly small things, for e.g. change in familiar classroom routines.
  • Is very good at art, singing, languages and/or reading.
  • Has a strong sense of social justice.
  • Maybe perfectionistic but disorganised for some tasks.
  • Tends toward black and white thinking.
  • May be gender fluid or dysphoric.
  • May be a tomboy.
  • Can have a literal interpretation of language.
  • Is extremely empathic and sensitive.

*NB: Wherever gender is referred to, we are referring to the gender assigned at birth.

References

Cook J, Hull L, Crane L, Mandy W. Camouflaging in autism: A systematic review. Clin Psychol Rev. 2021 Nov;89:102080. doi: 10.1016/j.cpr.2021.102080. Epub 2021 Sep 6. PMID: 34563942.

Hamdani Y, Kassee C, Walker M, Lunsky Y, Gladstone B, Sawyer A, Ameis SH, Desarkar P, Szatmari P, Lai MC. Roadblocks and detours on pathways to a clinical diagnosis of autism for girls and women: A qualitative secondary analysis. Womens Health (Lond). 2023 Jan-Dec;19:17455057231163761. doi: 10.1177/17455057231163761. PMID: 36999318; PMCID: PMC10071154.

Posserud, M-B, Skretting Solberg, B, Engeland, A, Haavik, J, Klungsøyr, K. Male to female ratios in autism spectrum disorders by age, intellectual disability and attention-deficit/hyperactivity disorder. Acta Psychiatr Scand. 2021; 144: 635– 646. https://doi.org/10.1111/acps.13368

Recent Research on Autism and Making Friends

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Recent Research on Autism and Making Friends

The diagnostic criteria for autism include criterion A3, …l difficulties in making friends…(APA 2022). From our clinical experience, we would add that when friendships are made, an autistic child or adolescent may also have difficulty maintaining friendships. Non-autistic children can intuitively know how to initiate, sustain and repair friendships. These abilities seem elusive for autistic children who often yearn for the quality of friendships of their peers. Non-autistic children have four stages in developing friendship abilities from preschool to the teenage years (Attwood, 2006). As clinicians, we recognise that autistic children tend to have a concept of friendship that is developmentally younger than their non-autistic peers, their duration and frequency of social engagement with peers is less, and their social and friendship network is consequently reduced. Our clinical experience over several decades is that autistic children and adolescents have difficulty identifying and defining the components of friendship and understanding the multiple dimensions of friendship, which has now been confirmed by research (Petrina, Carter and Stephenson, 2014). Reading non-verbal communication and social context can also be difficult, as well as accommodating alternative perspectives and managing conflict in a friendship. There is also the issue of sensory sensitivity when socially engaged with noisy non-autistic peers and the perception of chaos when social games are complex and fast-moving. They may seek a safe sanctuary on the periphery of social activities where they can relax, but being alone may cue non-autistic peers to see them as a target for teasing and bullying. We have also noted that when a friendship is made, it may be with another autistic student who shares the same interests and an autistic way of thinking and relating. However, they may meet after school less often than would be expected by non-autistic peers. Their friendship tends to be primarily school-based.

Over the last decade, there has been research comparing the friendship abilities and experiences of autistic girls in comparison to autistic boys. Autistic girls tend to have significantly better social interaction and communication skills than autistic boys, and this characteristic may not be captured by current diagnostic instruments (Wood-Downie et al., 2021). The Friendship Questionnaire was designed to measure friendship skills in autistic children and adults (Baron-Cohen & Wheelwright, 2003). A study of 10-16-year-old children using this instrument found that autistic girls and non-autistic boys tended to have similar Friendship Quotient scores, and autistic girls had greater friendship quotient scores than autistic boys (Head, McGillvray and Stokes 2014). This may partially explain why autistic girls’ friendship abilities are perceived as comparable to typical boys and, therefore, not of clinical concern, and contributing to autistic girls choosing boys rather than girls as friends.

Friendships in the preschool and primary school years

A study of autistic children in the preschool years found that only 20% had friendships at school and that while at school, adults rarely tried to intervene to encourage engagement with peers. The adults’ primary involvement was to correct behaviour (Chang Shih & Kasari, 2016). In the primary school years, autistic boys tend to be overtly excluded by peers, while autistic girls are more ignored or overlooked rather than actively rejected (Dean et al., 2014) Autistic children become less socially connected with increasing grade level, especially after grade 4 when social games and friendships become more sophisticated and for boys, greater sportsmanship required (Rotherham-Fuller et al., 2010). Our clinical experience is that when autistic children are asked to name their friends at primary school, the children named tend not to consider the autistic child as part of their friendship group. This may be due to an autistic child having difficulty differentiating between someone who is friendly and a true friend as defined by their peers.

The degree of social engagement can vary considerably after grade 4 and partly depends on the child’s motivation for social inclusion or isolation (Calder, Hill and Pellicano, 2013). Non-autistic children, increasingly after grade 4, seek emotional connectedness in friendships, while autistic children see friendship as primarily someone to play with rather than someone who provides emotional support.

Research has also explored the challenges an autistic boy experiences in initiating and maintaining friendships, with first establishing who might be a suitable choice for a friend, a desire not to be the one who initiates contact, trying not to violate the social hierarchy of peers at school, and concerns about not being exploited or considered a nuisance (Daniel & Billingsley, 2010). Thus, considerable anxiety is associated with making friends and uncertainty about how a potential friend perceives or could take advantage of them.

Friendships in the high school years

In the high school years, there are changes in the conceptualisation of friendship for non-autistic teenagers, with greater disclosure of thoughts, feelings and experiences and an expectation of emotional support. Autistic teenagers tend to less often refer to self-disclosure, empathic understanding and affection as defining characteristics of friendship (Platos & Pisula, 2021). They also have difficulty perceiving, following and responding to the covert social rules of adolescent friendship, understanding and managing conflict and experiencing anxiety due to being in a group and feeling watched and potentially judged by multiple people (Cresswell, Hinch and Cage 2019).
A study of adolescent autistic girls confirmed how exhausting socialising can be, especially in groups and coping with ‘too many opinions’ and feeling they needed to act as a peacemaker when conflict and disagreements occurred within a friendship group (Foggo & Webster, 2017). Adolescent autistic boys can have difficulty understanding and knowing how to respond to the joking behaviour of their male peers. They can misinterpret intentions and become confused and agitated (Sedgewick, Hill and Pellicano 2018), increasing peer alienation.

During their high school years, autistic adolescents can feel deeply lonely and yearn for connection with a group of peers. They cannot rely on intuitive abilities in social situations and often have to rely on cognitively processing social information, which is exhausting. Peers may criticise them for making social errors, and they invariably lack a best friend to provide social guidance and compliments rather than criticism for their friendship abilities. There can be an acute and distressing recognition of not being popular, as illustrated in the following quotations: I wasn’t rejected but did not feel completely included, and I was supported and tolerated but not liked. They may blame themselves or their being autistic for peer rejection, which inevitably affects self-esteem, self-identity, mood, and perception of autism. There will probably be anxiety about making a social mistake, as described in the quote: I live in constant fear of performance anxiety over day-to-day social encounters. Before falling asleep, the autistic adolescent may review and ruminate over the social experiences of the school day, which may lead to a conscious retreat into solitude: I’d rather just be alone, but I can’t handle the loneliness.

In the yearning for social connection and friendship, autistic adolescents may be accepted by marginalised groups of teenagers that engage in activities and interests that cause concern for parents. This can include peers who engage in alcohol and drug use, are developing eating disorders or exploring being an alternative gender. The group welcomes and ‘adopts’ the autistic teenager, who has an enjoyable role of collecting, collating and communicating information from the Internet, which the group values.

In their teenage years, autistic adolescents may engage in camouflaging their autistic characteristics by masking and compensation strategies to be accepted by their peers and to make friends (Hull et al. 2017). Masking involves creating an alternative persona based on their observation and analysis of the social behaviour of their peers, and compensation may include teenage autistic girls preferring the friendships of boys who do not tend to have the complex and subtle expectations of friendships that occur between girls.

In our clinical experience, we increasingly recognise the value of having an autistic friend. They may find each other on the periphery of social activities or during lunchtime or after-school interest groups such as robotics, computer programming, science projects, playing music and singing together, or simply sitting beside each other drawing or reading.

Programmes to encourage friendship abilities

There are several evidence-based programmes to encourage friendship abilities. Elizabeth Laugeson originally developed the PEERS programme for autistic adolescents and young adults (Laugeson et al., 2015). The programme includes components on developing and maintaining friendships, conversation skills, electronic communication, appropriate use of humour and romantic relationships and dating etiquette. A recent meta-analysis of research on the PEERS programme found moderate to large effects across measures and informants, with the largest effect in social knowledge, then social functioning and the smallest in the frequency of get-togethers. The PEERS programme has now been adapted for preschool autistic children (Tripathi et al., 2022). The programme themes include meeting and greeting friends, sharing and taking turns, asking a friend to play, joining a game, and asking for and giving help.

The Healthy Relationships on the Autism Spectrum (HEARTS) programme is an online manualised programme (Rothman et al., 2022). Each 90-minute class is taught by one non-autistic and one autistic team teacher, with participants undertaking the programme in the privacy of their own homes. The programme includes themes such as the motivation to keep the relationship going as described in the quotation: My challenge is actually staying in touch and making the effort to actually feel like I want to talk to them, emotional scars from previous friendships, self-disclosure and emotional intimacy, the ‘chemistry’ of friendship, distinguishing between ‘healthy’ and unhealthy’ friendships and setting social boundaries and trust.

The Secret Agent Society is a home or school based computer programme that includes activities to explain and enhance friendship abilities (Beaumont et al. (2021) with more information at www.sst.institute.net

Parents and teachers recognise the popularity of Lego and Minecraft for autistic children and adolescents. Daniel Le Goff has developed and evaluated Lego-based therapy to encourage social and friendship skills (LeGoff et al., 2017). Dundon and Scott (2019) have written a manual describing how Minecraft can be used to teach autistic children social skills. Jessica Kingsley Publishers (JKP) has published a range of books on Social Stories, originally developed by Carol Grey that can be used to encourage specific friendship abilities. JKP has also published several books by Jennifer Cook that explore and encourage social abilities for autistic children and adolescents. We also recommend the Social Thinking programmes developed by Michelle Garcia Williams and Pamela Crooke, with more information at www.socialthinking.com

References

APA (2022) Diagnostic and Statistical Manual of Mental Disorders-5 Text Revision. American Psychiatric Association

Attwood, T. (2006) The Complete Guide to Asperger’s Syndrome. London, Jessica Kingsley Publishers.

Baron-Cohen and Wheelwright, (2003) Journal of Autism and Developmental Disorders 33, 509–517.
Beaumont et al. (2021). Journal of Autism and Developmental Disorders 51, 3637-3650

Calder, Hill and Pellicano (2013) Autism 17

Chang Shih and Kasari (2016). Autism 20

Cresswell, Hinch and Cage (2019) Research in ASD 61, 45-60

Daniel and Billingsley 2010 Focus on ASD and other Developmental Disorders 25

Dean et al. (2014) Journal of Child Psychology and Psychiatry 55, 1218-1225

Dundon and Scott (2019) Teaching Social Skills to Children with Autism using Minecraft London, Jessica Kingsley Publishers.

Foggo and Webster (2017). Research in ASD 35

Head, McGillvray and Stokes (2014) Molecular Autism

Hull et al. (2017) Journal of Autism and Developmental Disorders 47, 2519-2534

Laugeson et al. (2015) Journal of Autism and Developmental Disorders 45

LeGoff et al (2017) How Lego-based Therapy for Autism Works Jessica Kingsley Publishers

Petrina, Carter and Stephenson (2014) Research in Autism Spectrum Disorders 8, 111-126

Platos and Pisula (2021) Research in ASD 81 101716

Rotherham-Fuller et al. (2010) Journal of Child Psychology and Psychiatry 51, 1227-1234

Rothman et al (2022) Autism 26, 690-702

Sedgewick, Hill and Pellicano Autism (2018)

Tripathi et al. (2022) Jr Autism and Developmental Disorders 52, 2610-2626

Wood-Downie et al. (2021) Journal of Child Psychology and Psychiatry 62, 922-936

Autistic Women* and Health Communication

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Autistic Women* and Health Communication

Autistic individuals generally experience more health issues than non-autistic individuals (Weir, Allison & Baron-Cohen, 2022). Autistic women face a range of health concerns that can be both physical and mental. Some of the common health concerns faced by autistic women are:

Mental Health: Autistic women are at a higher risk for developing mental health conditions like depression, anxiety, and obsessive-compulsive disorder (OCD). They may also experience higher levels of stress, which can negatively impact their mental health.

Sensory Processing Issues: Many autistic women experience sensory processing issues, which can include hypersensitivity to light, sound, touch, or smell. This can lead to discomfort, pain, and stress.

Digestive Issues: Autistic women are more likely to experience digestive issues like irritable bowel syndrome (IBS), constipation, and acid reflux. These issues may be related to food sensitivities or intolerances.

Sleep Problems: Autistic women may struggle with sleep, including difficulty falling asleep or staying asleep. This can lead to fatigue and other health issues.

Hormonal Issues: Autistic women may experience hormonal imbalances, including irregular menstrual cycles, polycystic ovary syndrome (PCOS), and thyroid problems.

Eating Disorders: Autistic women are at a higher risk for developing eating disorders like anorexia, bulimia, or binge-eating disorder.

Chronic Pain: Some autistic women experience chronic pain, including joint pain, headaches, and muscle pain.

Autoimmune Disorders: Autoimmune disorders such as Coeliac disease and Lupus are more common in autistic women.

Migraines

It is important for autistic women to receive appropriate medical care and support to address these health concerns. A healthcare provider who is knowledgeable about autism can help autistic women manage these issues and improve their overall quality of life. Autistic women with fluent speech are likely to represent themselves to healthcare providers, but for a variety of reasons may struggle to represent their issues within their healthcare settings. We have certainly found that many women in our clinical practice report that they struggle to attain the services they need, and for their needs to be understood and accommodated by their healthcare professionals.

Why do fluently speaking autistic women struggle with communication with healthcare providers?

Some of the difficulties autistic women can face when discussing their health issues with healthcare providers include:

  • a different perception of pain and discomfort, usually a higher, but sometimes a lower pain threshold, leading to under-reporting of symptoms or facing not being believed due to the amount of pain/distress described.
  • slower processing of social and emotional information.
  • difficulties expressing emotions verbally, including having alexithymia (difficulty both detecting and describing emotions using speech).
  • emotional challenges leading to ‘shut down’ and situational mutism
  • co-occurring social anxiety.
  • semantic or auditory processing difficulties, especially if there is background noise and conversations.
  • non-verbal skill difficulties, including processing of facial expressions, speech and gestures.
  • misinterpretation of questions, due to literal thinking, anxiety, or theory of mind (perspective-taking) difficulties.
  • sensory experiences often present in healthcare environments, including electronic noises from medical equipment, bright lights, certain odours, and physical contact.

Many autistic women experience an interaction of these social, emotional, communication, and sensory challenges.

Research findings on health communication for autistic women

One of us (MG) had the privilege to be involved in a research study investigating the challenges that may be involved for autistic women as they sought healthcare (Lum, Garnett & O’Connor, 2014). The study was led by Michelle Lum who recruited 58 adult female participants, approximately half of whom were autistic. An exploratory questionnaire was developed by using qualitative feedback from autistic women in addition to a literature review. The two groups were compared to determine whether autistic women experience greater healthcare challenges than non-autistic women in both general and maternity healthcare.

The results indicated that there were definite healthcare challenges for autistic women compared to non-autistic women. Autistic women experienced more healthcare anxiety, greater difficulties with communication whilst under emotional distress, anxiety related to the presence of other patients in the waiting room, more challenges accessing support during pregnancy, and more difficulty communicating their pain and needs during childbirth. 

Perhaps not surprisingly, only 75% of the autistic women disclosed that they were autistic to their health professional due to concerns about stigma. This is concerning because voluntary disclosure may enable specific accommodations to reduce the challenges that women experience and to flag the physiological conditions that are associated with autism, as described above.

All the women in the study had encountered healthcare professionals with limited or inaccurate knowledge of autism and found this extremely frustrating. Sixty percent of women said that they would find healthcare information relating specifically to their needs as an autistic woman as being frequently or always useful, compared to 25% who said this would sometimes be useful and 6% who said “never/infrequently.”

Accommodations that may reduce the healthcare communication challenges that autistic women experience

One of the major accommodations to assist autistic women in healthcare settings is increasing the healthcare provider’s awareness of autism allowing them then to accommodate their individual patient needs and reduce healthcare anxiety. Whilst this accommodation is out of the control of many autistic women, it remains a strong need in the healthcare community and, with the latest figures showing the high prevalence of autism, being one and 36 children (Maenner et al, 2023), awareness of autism in our community is necessarily growing.

Autistic women can search to find a GP in their area who understands autism and can educate their GP on  their own specific needs, as they understand them, and they can request that their GP help them to discover more needs over time. We have found that giving people the information they may need to know at a particular time can be helpful, either as a spoken or written Social Story ™ (https://carolgraysocialstories.com/). For example, if describing emotions is difficult, saying, “I am the sort of person who struggles to put my feelings into words, but I have a Feelings Wheel we could use which may help me” may be helpful. The Feelings Wheel (hyperlink to https://feelingswheel.com/) can be downloaded and taken along to consultations. Or if processing time is an issue, the person may say, “I am the sort of person who needs time to process oral communication. Please allow me more time to process what you are saying before I answer.”

Healthcare practitioners can accommodate autism within the workplace by asking if there are any social, emotional or sensory issues they need to be aware of. Some of these may include attending to sensory overload, for example overcrowded waiting rooms, strong smells of perfume and cleaning products, allowing more processing time within interviews and enhancing communication by the use of resources, for example, visual pain scales. They can support their autistic patients to use strategies that would assist their management of sensory and emotional challenges, for example, the use of noise cancelling headphones or earplugs in the waiting room, and provision of written information at interview, rather than relying on verbal discourse.

*NB: Please note that wherever gender is referred to in this article we are referring to the gender assigned at birth.

References

Lum, M., Garnett, M., & O’Connor, E. (2014). Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder, Research in Autism Spectrum Disorders, Volume 8, Issue 12, Pages 1713-1721, ISSN 1750-9467, https://doi.org/10.1016/j.rasd.2014.09.009.

Maenner MJ, Warren Z, Williams AR, et al. (2023). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023;72(No. SS-2):1–14. DOI: http://dx.doi.org/10.15585/mmwr.ss7202a1.

Weir E, Allison C, Baron-Cohen S. (2022). Autistic adults have poorer quality healthcare and worse health based on self-report data. Mol Autism. 2022 May 26;13(1):23. doi: 10.1186/s13229-022-00501-w. PMID: 35619147; PMCID: PMC9135388.

Autism in Couple Relationships

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Autism in Couple Relationships

Part of the early appeal of dating an autistic person for a person who is not autistic can be a sense that they are different that they have a mind that can grasp astonishing complexity, they are wonderfully attentive, have deep compassion, are fair-minded, are very talented in their field, extremely loyal or different in ways that are intriguing but not yet fully apparent. Indeed the early stages of dating may not indicate the long-term relationship issues that can occur. On both sides, there can be expectations of how a long-term relationship “should” be, each informed by their own culture or way of thinking. We have learned through our vast clinical experience that approaching relationships between autistic and non-autistic individuals can be likened to a cultural exchange programme, where there needs to be understanding and acceptance of each person’s culture for the relationship to succeed. Certainly, this is true in all relationships but it plays out more significantly when one partner in the relationship is autistic.

The early stages of dating may not indicate the long-term relationship issues associated with autism. The autistic partner may have initially camouflaged and suppressed their autistic characteristics to be more attractive to a non-autistic partner. They may have acquired a dating ‘script’ from watching romantic movies and created a ‘mask’ or artificial persona. However, gradually the mask is removed, and it becomes apparent that the autistic partner does not intuitively know long-term relationship skills.

Theory of Mind

Some of the issues in the relationship can be due to aspects of ‘Theory of Mind’, a psychological term that describes the ability to read facial expressions, body language, tone of voice and social context to determine what someone is thinking or feeling. Both partners experience this. We have known for some decades that autism is associated with Theory of Mind difficulties, and these are part of the diagnostic criteria. However, the non-autistic partner can also have difficulty ‘reading’ the inner thoughts and feelings of their autistic partner. This is described as the Double Empathy issue (Milton, 2012). The autistic partner may not express subtle emotions in facial expressions, tone of voice and body language.

In a conversation, the autistic partner can struggle to find the words to express thoughts and feelings due to aspects of interoception and alexithymia. That is the sensory perception of the body signals that indicate emotional states such as heart rate and breathing (interoception) and being able to translate the emotions that you feel or remember into speech (alexithymia). This will affect the ability of the autistic person to disclose their inner world and communicate their feelings. As the relationship progresses, the non-autistic partner will anticipate increasing self-disclosure as a sign of the depth of the relationship and trust. The non-autistic partner must recognise that their autistic partner has genuine difficulty perceiving and communicating their inner world.

Social engagement

Autistic adults can achieve successful social engagement, but this may be by intellect rather than intuition and often with social guidance from the non-autistic partner. Social occasions are mentally exhausting and energy-draining. In contrast, the non-autistic partner may find that social experiences require little mental energy and may create energy. The non-autistic partner may reluctantly agree to reduce the frequency and duration of social contact with family, friends, and colleagues for the sake of the relationship but feel deprived of experiences they enjoy.

The non-autistic partner may also recognise that their autistic partner can engage socially at work but, on returning home, is exhausted and actively seeks solitude or engagement in a hobby or interest as a means of energy recovery. Although the couple lives together, the autistic partner has a diminishing need for social, conversational and leisure time together. An issue for the non-autistic partner is feeling lonely within the relationship.

Communication

One of the consequences of difficulties with Theory of Mind abilities is misinterpreting intentions, such as determining whether a comment or action was deliberately malicious, humorous or benign. This can lead to conflict within the relationship, with either partner being quick to take offence.

Another communication issue is a tendency for the autistic partner to be perceived as overly critical and correcting and rarely providing compliments. They intend to improve their partner’s proficiency and anticipate gratitude for their advice, being unaware of the effect on their partner’s self-esteem. There may also be a reluctance to provide compliments due to not intuitively knowing that in a relationship, the non-autistic partner need for regular approval and admiration and reluctance to give a compliment when their partner is already aware of their achievement.

As the non-autistic partner describes their daily experiences, their autistic partner may not engage in the anticipated degree of eye contact and words, sounds, and gestures of compassion and interest. The autistic partner absorbs the story but does not appear attentive and is eager to provide practical advice rather than non-judgemental listening and empathy. The non-autistic partner can feel they lack emotional support but experience considerable practical advice.

Expressions of love and affection

In a conventional relationship, regular expressions of love and affection are expected. A metaphor for the need and capacity for expressions of love and affection can be that a non-autistic partner has a ‘bucket’ capacity for love and affection that needs to be regularly filled and replenished. In contrast, an autistic partner has an affection ‘cup’ capacity that is quickly filled. The autistic partner may be perceived as not expressing sufficient affection to meet the needs of his or her partner, who feels affection deprived and unloved, which can contribute to low self-esteem and depression.

When the autistic partner recognises the value of expressions of love and affection in the relationship, there can be the issue of the frequency, type, intensity and duration of expressions of love and affection. As an autistic partner said: ‘We feel and show affection but not enough and at the wrong intensity’ and “I know I am not meeting her needs, but I don’t see them, will I ever be able to make my partner happy”. A non-autistic partner gradually realised that “…he can’t give me my needs because he doesn’t see them, he doesn’t perceive them and doesn’t ask about them… I often feel alone in our relationship because he’s not quite with me” (Smith et al., 2021)

Emotion repair

During personal distress, when expressions of empathy and words and gestures of affection would be expected as an emotional restorative, the autistic partner may not read the signals to elicit emotion repair (Theory of Mind) or know and have confidence in what to do. Their emotional repair mechanisms may be solitude and engaging in their interests and hobbies as a thought blocker. Affection may not be perceived as an emotion repair mechanism, with a hug perceived as an uncomfortable squeeze which does not automatically make them feel better. A typical comment of the non-autistic partner is that hugging their autistic partner is like ‘hugging a piece of wood’. The person does not relax and enjoy such close physical proximity and touch.

Being alone is often the primary emotional repair mechanism for an autistic partner, and they may assume that is also the case for their non-autistic partner, with the thought that if I leave her alone, she will get over it quicker. They may also not know how to respond or fear making the situation worse, as in the relationship counselling session where an autistic partner sat next to his wife, who was in tears. He remained still and offered no words or gestures of affection for emotional repair. When asked if he knew his wife was crying, he replied, “Yes, but I didn’t want to do the wrong thing.”

The autistic partner can be accused of being callous, emotionally cold and lacking empathy due to a genuine difficulty reading interpersonal signals and knowing how to respond. The non-autistic partner gradually realises that they need to be very clear and direct in expressing their feelings and suggesting to their partner what they need to do for emotion repair.

Intimacy

There may be issues associated with verbal, emotional and physical intimacy. The effects of alexithymia will inhibit verbal and emotional intimacy, that is, converting thoughts and feelings into speech. However, an autistic partner may be able to express their thoughts and feelings indirectly using music, poetry, a scene from a movie, a passage in a book or typing rather than speaking their thoughts and feelings.

Sensory sensitivity may affect physical intimacy, leading to confusion, distress, and frustration with sexual experiences for an autistic partner (Gray et al., 2021). Autism is associated with a low or high threshold for sensory experiences, especially tactile experiences. A low threshold can lead to experiencing discomfort or pain when lightly touched during moments of intimacy. A high threshold can lead to requiring greater physical stimulation, as in the comment from the Gray et al. research paper, “I am not particularly sensitive, so I need more friction to achieve orgasm”. There may also be the issue of the use of drugs and alcohol, as in another comment from the same research study. Only when I am drunk do I feel comfortable being touched or touching others.

There can be issues with the frequency and quality of physical intimacy, which influences sexual satisfaction (Boling, 2016). Sex can become an intellectual interest for an autistic partner in acquiring information on sexual diversity and activities, often from pornography, and sex may function as a means of self-calming and emotion regulation. This was described by one of the participants in the Gray et al. (2021) study “I went through this highly sexualised phase because I just loved the way orgasms made me feel and connected me to myself and centred me. It was like the best self-regulation strategy I had found” The desire for and frequency of sexual activities and experiences may not be reciprocated by the non-autistic partner.

However, from our extensive clinical experience, the non-autistic partner is more likely to be concerned about the lack of sexual desire rather than an excess. The autistic partner may become asexual once he or she has children. In a relationship counselling session, the partner of an autistic man was visibly distressed when announcing that she and her husband had not had sex for over a year. Her autistic husband appeared confused and asked, “Why would you want sex when we have enough children?”

Partnership

In modern Western society, we have replaced the word husband or wife with the word partner. This reflects changing attitudes towards long-term relationships. There is an expectation of sharing the workload at home, for domestic chores and caring for the children, and being each other’s best friend regarding the disclosure of thoughts and feelings, reciprocal conversation, sharing experiences and emotional support. Taking on the role of a best friend is not easy for an autistic partner to achieve due to having lifelong difficulties making and maintaining friendships.

For those autistic adults who have problems with executive function, that is, organisational and time management abilities, distractibility and prioritisation, procrastination and completing tasks, the non-autistic partner often takes responsibility for the family finances, ensuring jobs are completed and resolving the organisational and interpersonal problems that have developed in their partner’s work situation. The non-autistic partner takes on the executive secretary/ mother role, frequently prompting their partner on what to do (Wilson et al., 2014). This aspect of the relationship adds to the stress and responsibility of the non-autistic partner and can be a source of conflict in the relationship.

Conflict management

In any relationship, there will inevitably be areas of disagreement and conflict, such as having different parenting styles. Unfortunately, autism is associated with a developmental history of limited ability to manage conflict successfully. The autistic partner may not be skilled in negotiation, accepting alternative perspectives, agreeing to compromise, and the art of apology and may tend to hold and ruminate over grudges. This can be due to difficulty with understanding the thoughts, feelings and perspectives of others, a central characteristic of autism and limited experiences of childhood and adolescent friendships where these abilities are practised. Effectiveness in resolving conflict is a factor in relationship satisfaction for both the autistic and non-autistic partner (Bolling, 2016).

Emotion management

Autism is associated with experiencing strong emotions, especially anxiety, anger and despair and difficulty coping with stress at work and home. (Attwood 2006). There may be issues in the relationship regarding anxiety because the autistic partner can be very controlling, and life for the whole family is based on rigid routines and predictable events. There may be concerns regarding anger management and the risk of physical and psychological abuse (Arad et al., 2022), and both partners may be vulnerable to being depressed (Arad et al., 2022; Gotham et al., 2015). The relationship may benefit from assessing specific mood disorders and appropriate treatment and professional support.

Mental and physical health

Surveys of the mental and physical health of couples where one partner is autistic indicate that the relationship has very different health effects for each partner (Arad et al., 2022; Aston, 2003). Most autistic male partners considered that their mental and physical health had significantly improved due to the relationship. They stated they felt less stressed and would prefer to be in the relationship than alone.

In contrast, most non-autistic partners stated that their mental health had significantly deteriorated due to the relationship. They felt emotionally exhausted and neglected, and many reported signs of clinical depression (Lewis, 2017). A sense of grief may be associated with losing the hoped-for relationship, as illustrated by the comment, “It’s not only what I’ve lost, it’s what I’ve never had… (Millar-Powell & Warburton, 2020). Most non-autistic survey respondents also stated that the stress associated with the relationship had contributed to a deterioration in physical health.

Thus, we increasingly recognise the potential benefits of couples engaging in relationship support and counselling, which focuses on assisting their clients in identifying each other’s needs and how best to meet them (Yew et al., 2023).

References

Arad, Schectman and Attwood (2022). Journal of Psychology and Psychotherapy 12

Aston (2003) Asperger’s in Love: Couple Relationships and Family Affairs London, Jessica Kingsley Publishers.

Attwood, T. (2006). The Complete Guide to Asperger’s Syndrome London, Jessica Kingsley Publishers.

Bolling (2026) Asperger’s Syndrome/Autism Spectrum Disorder and marital satisfaction: a quantitative study Antioch University, New England.

Gotham, Unruh and Lord (2015). Autism 19

Gray, Kirby & Holmes (2021). Autism in Adulthood 3

Lewis (2017) Journal of Marital and Family Therapy 43

Millar-Powell and Warburton (2020). Journal of Relationship Research 11

Milton, D. (2012.) Disability and Society 27

Smith et al., (2021) Journal of Autism and Developmental Disorders 51

Wilson, Beamish, Hay & Attwood (2014). Journal of Relationship Research 5

Yew, Hooley & Stokes (2023). Autism in press.

The dating game and Autistic adolescents

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The Dating Game and Autistic Adolescents

Typical teenagers are usually enthusiastic about going beyond friendship and experiencing the dating game. They are exploring their new sexual awareness, who they find attractive, and who is attracted to them. Their romantic and sensual experiences become a major topic of conversation with peer advice on the ‘rules’ of the dating game. Our clinical experience suggests this may not be the case for autistic teenagers. They may be delayed by several years in being interested in a romantic relationship and have difficulty resonating with their peers’ interest in dating. They are also often socially isolated and may not have a circle of friends who discuss and disclose information on dating and sexuality.

In order to participate in the dating game, it is important to read subtle non-verbal communication that indicates mutual attraction and explore one another’s expectations in a romantic relationship. Typical teenagers understand dating conventions from intuition, observation and discussion with their peers. When dating, both partners progress along the relationship continuum at a reciprocally agreed and mutually enjoyed pace. Typical adolescents have considerable experience with many friendships, developing conflict management strategies and the art of compromise. They also know how much time to spend together and communicate through social media.

Autistic adolescents often need guidance and support in each of these dimensions.

Reading body language

There are many subtle ways that body language can indicate an interest in someone, such as the head tilted to one side, which means I am listening, nodding to indicate agreement or approval, smiling to indicate feeling happy with the conversation and looking at the other person’s face, especially the eyes to read the person’s feelings. There are other ways to tell that someone is interested in or likes someone, such as going out of their way to engage in a conversation, wanting to sit together and often giving compliments to the person they like. It is also important to know when body language expresses not interested such as frequently looking away, avoiding eye contact and a ‘closed’ body posture and flat facial expression.

A characteristic of autistic adolescents is difficulty accurately reading the intentions and personalities of their peers. Someone’s act of kindness may be interpreted as meaning more than was intended. Some personalities frequently engage in touch during a conversation due to their culture which may not be a sign of seeking a romantic attachment. Typical teenagers often have friends they can consult regarding the intentions of a potential dating partner.

Attraction

It is important to explore what aspects of personality, abilities, and appearance are attractive when seeking someone to date. There are differences in what adolescent girls and boys may seek. There is a general convention that girls may have a greater emphasis on personality and ability attributes and boys on physical attributes. When we have discussed attraction with autistic teenagers this convention can be maintained, but we have found that attributes such as intellect, being accepted and understood, sense of humour, and similar interests have been rated as more important for autistic than typical adolescents.

Asking someone for a date

An autistic adolescent may rehearse and need guidance on asking someone on a date or responding to an invitation for a date. They need to consider where the date will be and who may also be there. Autistic adolescents may be naïve, trusting, and unaware of being in a potentially risky situation.

There are also aspects of what to wear on a date, topics of conversation and knowing if the date is mutually enjoyable.

The development of a romantic relationship

A romantic relationship may evolve into disclosing deeper and more personal inner thoughts, emotions, and experiences. Some autistic adolescents may have alexithymia which is difficulty disclosing and explaining inner thoughts and emotions through speech. Their romantic partner may be concerned that self-disclosure may not have the same degree of depth and reciprocity.

The agreed ‘balance’ of touch, affection, and sensual experiences can be an issue. An autistic adolescent may need guidance on these aspects of a romantic relationship as a characteristic of autism can be a sensitivity to tactile experiences, especially those that may occur with gestures of affection and may extend to sensual and sexual experiences (Gray, Kirby and Holmes 2021) There is also the potential issue of reading the signals and context when the typical partner anticipates gestures and words of affection and compassion. There will need to be open communication and mutual understanding.

There may also be an issue of recognising the human sexual response for both partners and education with regard to sexuality (Attwood, 2008; Dekker et al 2017; Hartman 2014; Henault 2006 Visser 2017)

As the relationship progresses there could be concerns with regard to the amount of time spent together and communication on social media. There is potential for the enthusiasm of one partner to be perceived as too intrusive and intense, with a risk of them ‘wearing out their welcome’. Guidance from peers and parents can be very helpful.

The experience of love

A characteristic of autism is having difficulty perceiving and regulating emotions. Clinically we tend to focus on feelings of anxiety, sadness and anger, but love is a feeling. We have developed a programme From Like to Love to help young autistic children understand, express and enjoy love and affection with family and friends (Attwood and Garnett 2013). Many strategies apply to autistic adolescents embarking on the dating game, with age-appropriate adaptation, which includes expressions of love that are perceived as inappropriate or too intense, such as accusations of stalking (Post et al 2017)

An autistic teenager may also experience high levels of anxiety when meeting and being with a person towards whom they have strong feelings of affection and ruminate on their social/romantic performance. They may need guidance in coping with the emotion of love and anxiety.

Knowing the relationship is going well or not well

There are signs that the relationship is going well, such as both partners being happy to see each other, having a genuine interest in each other’s experiences, thoughts and feelings, smiling, laughing and having fun together with each feeling free to be their natural self and feeling safe and relaxed.

There is also the question of knowing the signs that the relationship is not going well. These negative signs may be the opposite of the positive signs described above, such as being critical and finding fault. We have found that another sign is one of the partners being possessive or controlling.

Adolescent romantic relationships often have a ‘use by date’ and may last from days to months and occasionally years. Adolescents may experience the ending of a relationship several times; sometimes, it is their choice, and sometimes not. There are many ways of ending a relationship; if an autistic person makes that decision, they will need guidance on how to do that appropriately. If the decision is from their romantic partner, they will experience rejection which may be reminiscent of rejection from previous friendships or romantic relationships. There will need to be time and support for recovery, to move on and not ruminate on the relationship, and to acknowledge what has been learned about the dating game from the relationship.

Long-term relationships

The focus has been on the dating game in adolescence, when romantic relationships may have a limited duration. However, many characteristics of autism contribute to a successful long-term relationship. These include kindness and a sense of social justice, loyalty and integrity, ability in a chosen career in science, technology, the arts and caring professions, passion for knowledge, and maternal and paternal abilities.

References and resources

Attwood S. (2008) Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger’s Syndrome. Jessica Kingsley Publishers

Attwood and Garnett (2013) From Like to Love Jessica Kingsley Publishers

Dekker et al (2015) Journal of Autism and Developmental Disorders 45 (6)

Gray, Kirby and Holmes (2021) Autism in Adulthood

Hartman D. (2014) Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders Jessica Kingsley Publishers

Henault I. (2006) Asperger’s Syndrome and Sexuality. Jessica Kingsley Publishers.

Post et al (2014) Journal of Autism and Developmental Disorders 44:11

Uhlenkamp (2009) The Guide to Dating for Teenagers with Asperger Syndrome Autism Asperger Publishing Company

Visser, K et al., (2017) A randomized controlled trial to examine the effects of the Tackling Teenage psychosexual training program for adolescents with Autism Spectrum Disorder. Journal of Child Psychology and Psychiatry 58:7, (2017) pp 840-850

Understanding empathy and autism

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Empathy

We know that there are three forms of empathy, cognitive, affective, and behavioural and that the expression of each is underpinned by similar and different neurological structures in the prefrontal cortex. Cognitive empathy is the ability to determine what someone is feeling or thinking by ‘reading’ their facial expressions, gestures, vocal tone, and social context. An autistic person may need to use intellect rather than intuitive abilities to identify and process nonverbal communication that they see and hear. Affective or emotional empathy is the ability to ‘feel’ the emotions of others. A recurring theme from our clinical experience of talking to autistic teenagers and adults and reading autobiographies is an over-sensitivity to the negative feelings of other people. Behavioural empathy is knowing how to respond to someone’s feelings. Autism is associated with uncertainty in identifying what is expected to be said or done to alleviate or respond to someone’s feelings.

Emotional empathy

A central characteristic of autism is difficulty knowing how to read and respond to the emotions of others (Schwenck et al 2012). However, clinical experience indicates that there is a hypersensitivity to feeling another person’s negative emotions such as disappointment, anxiety or agitation. Autistic individuals have a remarkable capacity to mirror, or amplify within themselves, how another person feels (Fletcher-Watson and Bird 2020). As one of the participants in that study said, “We express empathy differently.” This capacity has been described as empathy over-arousal (Smith 2009) and occurs in both autistic males and females (Schwenck et al 2012).

We have yet to determine how this capacity is achieved but quotations from autistic adults may provide some indication.

I am able to distinguish very subtle cues that others would not see, or it might be a feeling I pick up from them.

There’s a kind of instant subconscious reaction to the emotional states of other people that I have understood better in myself over the years.

Emotional empathy can occur with all expressions of autism. Robert Hughes (2003) wrote about his non-speaking autistic son, Walker whom he described as being a “supersensitive emotional barometer who registered the true emotional pressure in the air, no matter how hard we tried to mask it”.

Exteroception

We have long recognized that a characteristic of autism is an extraordinary perception of sensory experiences from the external world which we describe as exteroception sensitivity. This can be a heightened sensitivity to sounds, light intensity, tactile experiences, aromas, and tastes. We speculate that exteroception may include a sensitivity to the emotions of other people. An extraordinary ‘sixth’ sense can be a response to being with someone who is experiencing negative emotions, but also responding to suffering on television news and in documentaries far more than is typical.

In contrast to heightened exteroception, an autistic person can have difficulty with interoception, that is perceiving their own internal sensory experiences, such as not being consciously aware of increasing heart rate and breathing that indicate rising anxiety or agitation. In his autobiography, Aaron Wahl (2019) wrote “I perceived the feelings of others often overly clear but could not find access to my own”.

Negative and positive emotions

Our clinical experience indicates that there is an extraordinary perception and sensitivity to another person’s negative emotions, as in the comment If someone approaches me for a conversation and they are full of worry, fear or anger, I find myself suddenly in the same state of emotion. Negative emotions in others are ‘infectious’ to an autistic person. One of our clients’ said Emotions are contagious for me. Emotional empathy may be one of the reasons why autistic individuals avoid crowds due to the risk of proximity to someone who is experiencing a negative mood and being ‘infected’ by that mood.

As psychologists, we often try to determine why an autistic person experiences a negative emotion, and one of the reasons may not be due to a specific event or thought but being ‘infected’ by someone’s negative feelings. This may also contribute to a characteristic of autism of avoiding eye contact since the eyes convey feelings (Smith 2009).

Social withdrawal for an autistic person is not exclusively due to social expectations and sensitivity to auditory, visual, and tactile experiences. Lilian said We don’t have emotional skin for protection. We are exposed, and that is why we hide. The sensitivity to the negative mood of others can lead to wanting everyone to be happy.

While we have found that someone’s negative mood can be contagious for an autistic person, they may not be equally ‘infected’ by someone’s positive mood. They can seem impervious to someone trying to ‘jolly them up’. Happy and exuberant positive emotions in others may sometimes cause an autistic person to be confused and uncomfortable and not know how to respond or resonate with others, for example, at a family celebration or reunion or when someone receives exciting news.

There seems to be a preference for a middle to a neutral range of emotions in others, both negative and positive emotions. If there is any greater intensity, the autistic person may become confused, overwhelmed and unsure of what they are expected to do or say.

Strategies for coping with empathic over-arousal

As clinicians, we help the person create a mental barrier using the metaphor of protection by putting on armour and using a shield or putting up an umbrella for protection from a downpour of emotions. We also use advice from autistic adults who share the same emotional empathy such as an autistic mother who said: We have lots and lots of empathy, but if it’s too much to deal with you have to just shut it off because it’s so overwhelming (Dugdale et al 2021).

We also advise family members and teachers to be aware of how their negative mood can be contagious to an autistic person and we teach strategies to stay calm and neutral to assist their loved one through difficult emotions. Sometimes parents and partners may try to temporarily suppress their feelings, although an autistic person may be able to sense the emotions behind their mask of neutrality.

We encourage autistic people to explain their sensitivity to someone’s mood and that the reason for their temporary withdrawal or avoidance of them is a coping mechanism due to emotional empathy and not a rejection of them as a person.

When an autistic person has difficulties with behavioural empathy, that is knowing how they are expected to respond to the distress of another person, they may need clear guidance and encouragement on what to do or say. This could be to suggest that the autistic person gives you a hug that is within their zone of tolerance or makes a reassuring comment.

We now have programmes to help autistic adults read nonverbal communication (cognitive empathy) and develop verbal empathic comments (behavioural empathy) (e.g., Koegel et al 2016).

We also recognize that increased emotional empathy may be an advantage when being with autistic children and adults by being aware of an autistic person’s tolerance of emotional states in others and adjusting their interactions accordingly. We know of many autistic individuals who thrive in the helping professions due to their high levels of emotional empathy.

References

Dugdale et al (2021) Autism 25, 1973-1984

Fletcher-Watson and Bird (2020) Autism 24 3-6

Hughes R (2003) Running with Walker Jessica Kingsley Publishers

Koegel et al (2016) Improving Verbal Empathetic Communication for Adults with Autism Spectrum Disorder Journal of Autism and Developmental Disorders 46, 921-933

Schwenck et al 2012 Jr Child Psychology and Psychiatry 53:6

Smith, A. (2009) The Psychological Record 59 489-510

Wahl A. (2019) Ein tor zu eurer welt KNAUR

Understanding challenging behaviour in classic autism

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Understanding challenging behaviour in classic autism

Classic autism is a term we use to describe our original conception of autism. A child or adult who has significant and conspicuous social, language, learning and behavioural impairments. We now use the term Autism Spectrum Disorder Level 2 or 3 to describe this expression of autism. Challenging behaviour can occur due to difficulties with communication, a distinct profile of cognitive and social abilities, sensory sensitivity and difficulty regulating emotions. There can also be movement disorders and medical factors that affect the behaviour of those who have classic autism.

Communication

One of the primary causes of challenging behaviour is frustration from not being able to effectively communicate thoughts and feelings. There is usually extremely limited speech which has not been replaced with a complex gestural communication system as occurs with deaf children. We are exploring the origins of the lack of speech which may be an expression of apraxia, that is a difficulty getting the brain into gear with the mouth and body. New therapies such as PROMT are designed to encourage speech by the specially trained speech pathologist using their hand to encourage jaw, lips, and tongue movement. There are also Apps to encourage vocalization and speech as well as advances in communication from Music Therapy and alternative and augmentative communication systems. It is important to remember that lack of speech does not automatically imply a lack of intelligence, and that for some classically autistic children, they learn to read before learning to speak.

When there is extremely limited speech, the signature mannerisms of autism are an effective means of communication. Parents and teachers often ‘translate’ the behaviour as thoughts such as “I can’t cope” or “I need help” or feelings such as jumping for joy or ‘in a flap’. These mannerisms can also be used as an early warning system of signs of distress and agitation.

Cognitive abilities

The cognitive profile associated with classic autism includes a range of characteristics that can affect behaviour. There can be a fear of making a mistake and a lack of cognitive flexibility such as not knowing what else to do. The overriding priority is to solve a problem rather than satisfy the social or emotional needs of others, with self-esteem from intellectual achievements. The learning style can be a ‘visualizer’ with a preference for a silent demonstration of what to do, and learning cognitive abilities and language from a computer or television screen. There can also be a talent and interest in identifying patterns and sequences and enjoying symmetry. However, there can be a very limited tolerance of frustration, with a tendency to quickly ‘hit the panic button’, having an intense aversive emotional reaction and giving up quickly to end the ‘pain’.

Social abilities

One of the central diagnostic criteria for autism is a deficit in social-emotional reciprocity, reading non-verbal communication and making and maintaining friendships. The social context can cause confusion, stress and feeling overwhelmed for autistic children and adults, leading to avoidance and escape behaviour. There are several relevant social dimensions such as the number of people in a room, intrusive peers and adults, and the duration of socializing. For an autistic person, socializing is emotionally and energy draining, rather than refreshing and enjoyable. There is a need for regular ‘oases’ of solitude, with a preference for solitude as an emotional restorative and for learning.

A characteristic of autism is to be extraordinarily sensitive to another person’s negative mood such as disappointment, anxiety, or agitation. There can be an avoidance of some social situations and specific people due to a perception of ‘negative vibes’ and quickly determining if someone is ‘autism friendly’. Some parents, teachers and therapists have an intuitive understanding of autism and facilitate social engagement rather than withdrawal.

We now have a range of programmes to encourage social abilities and confidence such as Social Stories developed by Carol Gray and ensuring social engagement, especially in a learning situation, that can be fun together.

Sensory sensitivity

Another diagnostic criterion for autism is sensory sensitivity. Specific sensory experiences are aversive and often painful. Repeated exposure does not automatically reduce the degree of sensitivity, but we can encourage endurance and develop avoidance and barrier strategies, such as vacuum cleaning the house when the child is at school, or using ear plugs or noise reducing headphones in the classroom or playground. The sensory profile associated with autism is complex including being overly sensitive to external sensory experiences such as sounds, lighting, touch, and smell, but lacking sensitivity to internal sensory experiences such as needing to use the toilet, hunger, and body temperature. Occupational Therapists have developed sensory assessment questionnaires for parents and teachers and strategies to moderate sensory sensitivity such as Sensory Integration and Processing Therapy.

An autistic child or adult lives in a world of terrifying sensory experiences and may have discovered a coping mechanism of being mesmerised by a repetitive action or sensation that ‘blocks’ the aversive sensory experience. Temple Grandin described how: “Intensely preoccupied with the movement of the spinning coin or lid, I saw nothing or heard nothing. People around me were transparent and no sound intruded on my fixation. It was as if I was deaf. Even a sudden loud noise didn’t startle me from my world. But when I was in the world of people, I was extremely sensitive to noise.”

The sensory profile associated with autism can also include craving specific sensory experiences, often avidly mouthing, touching, sniffing, or spinning objects.  The experience is perceived as enjoyable but can be distracting and disruptive in a school or community setting. Sensory Integration and Processing Therapy may also help with this type of challenging behaviour.

Regulating emotions

From early infancy, an autistic child or adult may be notorious for having intense anxiety, anger, or sadness, that seems to be an ‘on/off light switch of brilliant light rather than a gradually increasing dimmer switch. When extremely distressed the autistic child or adult is not responsive to reason, distraction, or compassion. There can be a meltdown that is outwardly directed and an energy explosion, or inwardly directed implosion. We are developing strategies for a meltdown that include a parent, teacher or caregiver not interrogating the autistic person as to why they are distressed, nor becoming emotional -especially expressing anger or affection and focusing on punishment and consequences to end the meltdown. It is important to affirm and validate the emotion, confirm the feeling will eventually go, to keep other people away, and perhaps using a special interest as an ‘off switch’.

Nearly all autistic individuals have high levels of anxiety throughout their day and intense anxiety associated with specific situations. This includes anxiety created by change, transitions and the unexpected, as well as the anticipation of aversive sensory experiences and abandonment (separation anxiety). To cope with anxiety an autistic child or adult may become very controlling of others and events in their daily lives, being oppositional and not complying with simple requests. Another coping mechanism is developing routines and rituals as a calming mechanism or engaging in a favourite activity as a thought blocker. An alternative effective coping mechanism is an explosion or melt down to discharge the emotional energy and to reset emotion regulation. There are strategies for each type of coping mechanism that becomes a challenging behaviour due to anxiety that includes the concept of an ‘Emotional Toolbox’ with a range of tools to regulate emotions and emotional energy. This can include regular physical activities, encouraging relaxation and self-awareness using mindfulness, mediation, and Yoga. There are additional tools in terms of medication for anxiety and depression.

Movement disorders and medical factors

Autism is associated with dyspraxia, a range of involuntary tics and akathisia or motor restlessness. These movement disorders will affect daily living skills and motor coordination and potentially cause frustration, stress, and distress. Advice may be sought from an Occupational Therapist or Physiotherapist. There are also medical factors that may affect behaviour and abilities, such as epilepsy, auto-immune disorders and poor quality and duration of sleep. Thus, the management of challenging behaviour in classic autism requires a multi-disciplinary approach, an understanding of autism and the function of specific behaviours.