Evidence for Autistic People Hiding \ Masking their difficulties in Educational and other Settings

Introduction

Autism professionals have a very good understanding of masking (thanks to evidence from parents) as reflected in the NICE guidelines for diagnosis of both children and adults. There are very specific warnings in the NICE guidelines about masking causing difficulties identifying autism and also, masking is specifically mentioned in the DSM 5 criteria for autism (which is used in the UK together with ICD-10 to diagnose).

Therefore there is no requirement to identify autism in more than one context for diagnosis, otherwise this would lead to significant under-identification.  Compared to identification of ADHD where the signs have to be present in more than one context, although this also presents a problem for identification when autism exists together with ADHD (40%) and masking of ADHD signs often takes place.

This means that if autism signs are reduced or not present in school or college, for example, that is definitely not a reason to stop investigating.  To make things even more complicated, not many people realise that there is no one behaviour that reliably identifies someone as autistic and therefore observation alone is obviously an insufficient approach.

Tony Attwood, Simon Baron-Cohen and many other experts, discuss masking in numerous text books and research papers describing how children and young people on the autism spectrum adapt and mask their signs of autism in different contexts.

Identifying autism is sometimes obvious, but on many occasions, especially for Asperger Syndrome and female presentations of autism, this is a job for specialists only.  Other people in health and education roles who are familiar with a limited range of presentations, will often fail to identify when masking is taking place and unfortunately, not defer to parents as the experts on their own children.

If someone has made one of these (or similar) comments as evidence that autism is not present, then question their knowledge and keep pursuing a diagnosis from someone that understands  autism.

• Use eye contact
• Shows empathy
• Shows imaginative play
• Interacts with other children normally
• Do not show anxiety about change
• Well behaved in class

Risk markers for suicidality in autistic adults

(Molecular Autism20189:42 (https://doi.org/10.1186/s13229-018-0226-4)

Research has shown high rates of suicidality in autism spectrum conditions (ASC), but there is lack of research into why this is the case.

A survey was developed with Autistic adults that included a question on ‘camouflaging’. In autistic adults, non-suicidal self-injury, camouflaging, and number of unmet support needs significantly predicted suicidality.

Results confirm previously reported high rates of suicidality in ASC, and demonstrate that ASC diagnosis, and self-reported autistic traits in the general population are independent risk markers for suicidality. This suggests there are unique factors associated with autism and autistic traits that increase risk of suicidality. Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC.

“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions.

Published in The Journal of Autism and Developmental Disorders May 2017. (DOI: 10.1007/s10803-017-3166-5)

Abstract
Camouflaging of autistic characteristics in social situations is hypothesised as a common social coping strategy for adults with autism spectrum conditions (ASC). Camouflaging may impact diagnosis, quality of life, and long-term outcomes, but little is known about it. This qualitative study examined camouflaging experiences in 92 adults with ASC, with questions focusing on the nature, motivations, and consequences of camouflaging. Thematic analysis was used to identify key elements of camouflaging, which informed development of a three-stage model of the camouflaging process. First, motivations for camouflaging included fitting in and increasing connections with others. Second, camouflaging itself comprised a combination of masking and compensation techniques. Third, short- and long-term consequences of camouflaging included exhaustion, challenging stereotypes, and threats to self-perception.

Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q).

Published in The Journal of Autism and Developmental Disorders 2018 (Cite as: Hull, L., Mandy, W., Lai, MC. et al. J Autism Dev Disord (2018). https://doi.org/10.1007/s10803-018-3792-6).

Abstract
There currently exist no self-report measures of social camouflaging behaviours (strategies used to compensate for or mask autistic characteristics during social interactions). The Camouflaging Autistic Traits Questionnaire (CAT-Q) was developed from autistic adults’ experiences of camouflaging, and was administered online to 354 autistic and 478 non-autistic adults. Exploratory factor analysis suggested three factors, comprising of 25 items in total. Good model fit was demonstrated through confirmatory factor analysis, with measurement invariance analyses demonstrating equivalent factor structures across gender and diagnostic group. Internal consistency (α = 0.94) and preliminary test–retest reliability (r = 0.77) were acceptable. Convergent validity was demonstrated through comparison with measures of autistic traits, wellbeing, anxiety, and depression. The present study provides robust psychometric support for the CAT-Q.

Dr Luke Beardon Blog

‘GOOD’ BEHAVIOUR AT SCHOOL – NOT SO GOOD AT HOME?

NOVEMBER 18, 2014 LUKE BEARDON

Note – this is not applicable to all individuals with autism, nor all schools!!!

Regarding autism and whether it is possible for children to display different behaviours at home compared to school – this is something that over the years probably hundreds of parents have asked me about. So often the message is a similar (and familiar) one – that at school the child ‘behaves’ well, while at home things can get…well, kinda out of hand! This results in huge frustration for parents who cannot seem to get school to accept that behaviour at home is so different to that at school, with school insisting that ‘everything must be ok’ [NB I am not suggesting that all schools respond in this way, many will be highly supportive of the family).

It is very clearly documented (by parents and professionals, as well as organisations such as the NAS) that many children with autism (though not all) will display considerably different behaviours in different settings. This can be as a result of a wide range of reasons, from central coherence abilities, to environmental factors, to differing levels of stress in different situations. A reasonably common pattern in terms of school/home behaviour is that the child may appear to present with no problems at school, but at home there can be major issues in terms of behaviour. Often, the result is that either school simply do not believe that the child they see at school can be displaying the reported behaviours at home, or that school erroneously believe that because the behaviours are only seen at home then the causing factors for the behaviour must also be situated there. This is not always the case, and it is of imperative importance that all parties involved recognise the serious nature of high levels of distress, and recognise that all aspects of the individual’s life may be a contributory factor towards high arousal – which, in turn, may manifest in behavioural issues. This can lead well into adulthood – for example I know several people whose behaviour at work appears to demonstrate no problem at all, whereas the reality is that they are in high states of anxiety and stress, to the point of self injury at home, and, in some cases, anxiety and depression. This demonstrates just how important it is that all concerned recognise this reasonably common autism related pattern as early as possible, in order to support the child (or adult) well. Just because a child has the ability to ‘mask’ their autism at school does not mean that they are not greatly impacted by their autism on a daily basis. In fact, it is often this ‘masking’ behaviour (acting, or copying other children) that lead school to believe that there is no problem at school; however, it may be that the child is behaving in this way precisely because they are stressed and have discovered that by copying others they can ‘hide’ their very real problems. When at home, all of the emotional distress may then be released in what is seen as a safe environment. The irony is that in some cases, it is the stress and anxiety experienced at school that subsequently lead to the copying behaviour and subsequent meltdowns at home!

National Autistic Society Resource Pack for School Staff

He behaves OK at school, but at home he is a nightmare…

This is also a common comment by parents and is rarely the result of poor parenting. The over-riding physical state for most people with an ASD is anxiety. This anxiety is a result of trying to constantly keep up with demands made by school staff as well as other pupils’ jokes and conversation.

It can be difficult for people who have not, for example, come across Asperger syndrome before, to appreciate the level of pupils’ anxiety especially as many have learnt to develop a superficial veneer of coping – appearing to fit in socially in order to avoid being labelled strange and because many are keeping doing their best to keep up with school work.

However, many pupils with the condition explain that by the time they get home they are feeling stressed, angry and worn out. These true feelings inevitably come out when they are at home and they can vent their frustrations – and parents and other family members bear the brunt of this. If parents come to you with this kind of comment, especially if they are unclear about what has been going on at school, it can be helpful to work out ways of keeping them in touch with school/homework activities or any particular incidents by using a home school diary or planner. Parents can also let you know of any issues in the same way, so it is important to check the diary or planner on a very regular basis: this kind of two-way communication is a very helpful tool.

Inclusion and the autism spectrum

Amanda Batten,
National Autistic Society, London
Improving Schools © SAGE Publications
Volume 8 Number 1 March 2005 93–96

Where training and resource needs are not met, the principle of inclusion is undermined. Placing a child in mainstream classrooms without adequate support places unfair pressure on teachers. For the child, it will lead to integration without social inclusion or educational progress at best, and destructive behaviour and exclusion from school in the worst cases. In fact, an NAS survey found that 21 per cent of children with autism have been excluded from school at some time, the most common reason given being that the school was unable to cope with the child (Barnard et al., 2000: 19). Autism is often described as a ‘hidden disability’, as an individual’s impairments may not be as easy to recognize and understand as those of a physically disabled child. Schools need staff training, resources and specialist support to help them to support pupils with ASD. At present the scale of the need for training cannot be overstated. NAS research indicates that 72 per cent of schools are dissatisfied with the extent of their teacher’s training in autism. In schools identified as having pupils with ASD, only 22 per cent of teachers had received any autism training, the majority for between one to four hours (Barnard et al., 2002).

Inclusive/exclusive? Contradictory perspectives on autism and inclusion: the case for an integrative position

International Journal of Inclusive Education
Vol. 15, No. 6, July 2011, 667–682
Jackie Ravet*

Teaching idioms to children on the spectrum, as opposed to other learners in the classroom, therefore requires a heightened sensitivity to their very different conceptual style and underlying constellation of difficulties. Hence the importance, for teachers, of an understanding of autism and the unique way in which they think. The problem, widely recognised in the research, is that many teachers do not have this understanding (HMIE 2006; Jones et al. 2008). They are therefore likely to see the English language learner and the child on the spectrum as having the same sort of difficulty. This tendency is exacerbated by the fact that autism is a ‘hidden condition’ (Frith 2003). Since these children and young people ‘look’ like others, it is easily assumed that they think and process like others and have the same underlying category of problem. Yet, children and young people diagnosed with autism have a unique and distinct way of thinking, communicating and interacting that can ‘interfere with functioning and distort development’ (Jordon 2005, 111) – particularly in unadapted environments. This is not true of children with mild expressions of aspects of the triad of impairments. Thus, their difficulties cannot be considered comparable (Jordon 2005).

Perceptions of school by two teenage boys with Asperger syndrome and their mothers: A qualitative study

Autism © 2001 SAGE Publications and The National Autistic Society
Vol 5(1) 37–48
Suzanne Carrington and Lorraine Graham (2001)
‘Masquerading’

Although both boys spoke of the stress associated with completing schoolwork and meeting the social expectations of peers, their mothers suggested that many of their feelings were hidden or ‘masked’ in the school environment. Both parents recalled the emotional reactions and stress that were evident when the boys returned home after a day at school.

Noel’s mum: An hour later at home he’s firing off because of a small trivial matter, and that’s when he’ll say, ‘You don’t know what happened to me today! I’ve had a bad day. I’m so stressed.’ And he still won’t tell me what happened. Mark’s mum: A lot of people can’t understand the stress business. And he hides it. They don’t know that he’s stressed at school. Even though these kids appear academically competent, there’s so much more going on in their life. Even though the kids mightn’t stress out at school they usually explode as soon as they reach the safety net at home. Then there is additional stress at home, not only on the family, but on the kids all over again. Part of the difficulty appears to be the significant variation in ability for someone like Noel. His mother describes the difficulty that children with Asperger syndrome often have in coping with such a broad range of ability: Unfortunately his range of functioning is so wide, I mean it’s not as though he’s low on everything or high on everything, he’s got some aspects of both. A lot of the time he’s acting like his 5-year-old sister, so immature: he cries like a baby and he demands my attention like a baby. And other times he’s like disciplining me like an adult, controlling me. So it’s sometimes like trying to handle a boy that’s beyond his years and thinking not like a 13-year-old should think. Other times he’s blowing people away with the things he comes up with.

Mark’s mum spoke about the ‘normal façade’ which masks her son’s deficits:

When you see a child who is so normal, you have doubts. Does he have it? Does he not have it? And then the next minute he does something and you know that he does [have it]. But sometimes it’s so hard to realize that there is a problem. So what goes on in those times? When appearances are normal, a lot of things can happen. A lot of information should have been absorbed and processed and it hasn’t been. And you forget that it hasn’t been absorbed and processed properly. And a situation arises and you’re going, ‘But, I’ve already told you!’ And you sort of forget.

Third, as Mark and Noel begin their teenage years, it is evident both that they are aware of ‘not fitting in’ and that they are trying to mask their deficits. There is considerable stress associated with this masquerading and this in turn may lead to depressive symptomatology for these adolescents (Szatmari, 1991; Williams, 1995). Teachers and parents must be aware of the pressures that young people with Asperger syndrome experience and need to consider ways in which they can help to minimize and control stress (see also Attwood, 1997; Williams, 1995). Teachers and parents also need to be alert to any changes in behaviour that may indicate depression. Symptoms can include disorganization, inattentiveness and isolation, decreased stress threshold, chronic fatigue, crying and suicidal remarks. Behaviour difficulties may also surface as a result of stress and the overwhelming panic that individuals may feel when events in their social world become unintelligible and unpredictable. Coping and calming strategies can be presented and practised. For example, Williams (1995) suggested that students can be encouraged to write down a list of concrete steps that can be followed when they become upset. It may also help to include a ritualized behaviour that the individual finds comforting such as tapping in time to a silent tune (Williams, 1992). Music played through earphones may also be calming. Noel spoke about using a Walkman to listen to peaceful music in order to manage his stress: ‘I like listening to music. It kind of makes me calm. It cools me down.’

The larger CNV observed in affected females could support the long speculated hypothesis that an underlying protective factor may minimize, or at least camouflage, the clinical presentation of ASD among affected females. Accordingly, a greater amount of abnormality may be required for the phenotype to present (Gilman et al. 2011; Robinson et al., in press

Though the literature is scarce, it appears that the implications of female gender in ASD are twofold. On the lower-functioning end of the spectrum, while males are still predominantly represented, the incidence of females with ASD increases dramatically, indicative of a more severe cognitive impairment among affected females who are diagnosed with ASD. Yet the altered presentation of clinical symptoms, as well as cognitive profiles and comorbid conditions experienced by females on the higher-functioning end of the spectrum, may serve to mask or camouflage their clinical symptoms, resulting in under- or misdiagnosis among this cohort. While researchers are yet to determine a mechanism directly accountable for these observed sex differences, our increasing understanding of biological, neurodevelopmental and comorbid mediators brings forth the opportunity for many novel hypotheses to be explored.

To consider an alternative hypothesis based on clinical observation, some authors describe a phenomenon whereby affected females express a keen interest in social situations and interaction (Attwood 2007; Kopp and Gillberg 1992). For example, a girl with ASD may thoroughly observe and analyse the social and play behaviour of others and imitate this through their own play with dolls or imaginary friends, or even adopt the observed persona in their own interactions with others (Attwood 2007). Kopp and Gillberg (1992) further describe autistic girls as more likely to display patterns of ‘‘clinging’’ behaviours towards others, as well as patterns of echolalia and imitation of other people’s actions. As such, it appears that the restricted interests of affected females may actually mask the presentation of their social deficits. As a result, affected females display what appears to be socially-appropriate play behaviour (Attwood 2007), but lack a deeper understanding of the social value and meaning of their interactions and play.

(Kopp and Gillberg 1992).

Attwood (2007) describes girls with AD as ‘‘little philosophers,’’ engaging in conversation regarding their observations and beliefs of social convention and events. Hence, the strong interest in socialization demonstrated by affected females may again serve to mask clinical symptoms as their restricted interests are more socially appropriate than those displayed by affected males.

For example, there is evidence to suggest that females with ASD may not present with the same behavioural pattern of visual self-stimulation via extreme preoccupation with particular interests or (parts of) objects (Kopp and Gillberg 1992; Lord et al. 1982; Nicholas et al. 2008). This is possibly due to less developed visuospatial skills (Kopp and Gillberg 1992), and as described in the sections above, females may even develop restricted interests in the realm of social interaction (Attwood 2007; Kopp and Gillberg 1992) which goes unrecognized under this category and serves to mask the symptom presentation in the social and communicative domains. Pertinent to consider, given the forthcoming changes in DSM-5 that include ‘‘unusual sensory behaviours’’ as a core diagnostic criteria, are differences in sensory stimulation that may not have been captured by current standardized measures. As current measures (DSM IV), do not adequately incorporate this criteria, using items 71–73 of the ADI-R Lai et al. (2011) specifically investigated such behaviours. Interestingly, they identified more life-long unusual sensory responses among affected females, which highlights the importance of further investigation in this domain. Further there have been suggestions of more frequent and unusual stereotypical visual interests for affected females (Lord et al. 1982).

ASD in Females: Are We Overstating the Gender Difference in Diagnosis?

Clinical Child Family Psychology Review (2014) 17:67–84
Nicole L. Kreiser and Susan W. White

One might expect that adverse consequences (e.g., disapproving social reactions from community members) for engaging in disruptive or non-conforming behaviour, including acting aloof or asocial, or being socially insensitive, are likely experienced more severely by females with ASD due to culture-based gender role expectations (e.g., interpersonal sensitivity, emotional attunement, empathy) in contrast with core ASD deficits, and this may lead to females presenting with less severe social deficits or externalizing problems via intrapersonal processes that we later summarize (e.g., censure of behaviour, mimicry of salient gender normative behaviour). Further, peer groups may play an important role in serving to camouflage social deficits or shape the behaviour of females with ASD. Children selectively associate with same-gender playmates and pursue gender-typed activities, which increases the influence exerted by peers and creates highly differentiated environments for boys and girls (Bussey and Bandura 1999). In these peer interactions, children reward each other for gender-linked play and inappropriate gender conduct is punished (Lamb et al. 1980). Within the context of peer groups, females tend to interact with smaller and more intimate peer groups (Maccoby 1998) and face greater expectations for affiliation and the interpersonally focused conversations (Larson and Richards 1989; Raffaelli and Duckett 1989). Engagement in same-gender friendships and attending to same-gender modelling could serve to strengthen conversational or empathizing abilities among females with ASD. Conversely, females with ASD may experience peer rejection due to the nature of their deficits, further shaping their behaviour such that core deficits or non-conforming behaviour is masked.

Attenuation of Typical Sex Differences in 800 Adults with Autism vs. 3,900 Controls

Simon Baron-Cohen, Sarah Cassidy, Bonnie Auyeung, Carrie Allison, Maryam Achoukhi, Sarah Robertson, Alexa Pohl, Meng-Chuan La.

One study found females with autism had slightly but significantly higher scores on the Autism Spectrum Quotient (AQ) via self-report, even though they scored lower than males with autism on the Autism Diagnostic Observation Schedule (ADOS) [21]. This suggests they may have developed strategies to better ‘camouflage’ their social-communication difficulties. Overall, it remains unclear if autism abolishes or simply attenuates normative sex differences.

Gender differences in emotionality and sociability in children with autism spectrum disorders

Head et al. Molecular Autism 2014, 5:19
Alexandra M Head, Jane A McGillivray* and Mark A Stokes

Background: Four times as many males are diagnosed with high functioning autism compared to females. A growing body of research that focused on females with autism spectrum disorder (ASD) questions the assumption of gender invariance in ASD. Clinical observations suggest that females with ASD superficially demonstrate better social and emotional skills than males with ASD, which may camouflage other diagnostic features. This may explain the under-diagnosis of females with ASD.

In a clinical description, Attwood [9] describes females who develop coping mechanisms or an ability to camouflage their social inadequacies through imitating and memorising acceptable social behaviours. This clinical description supports the Camouflage Hypothesis, originally proposed by Wing [39]. Wing proposed that females with ASD develop social skills and coping mechanisms that allow them to blend in or camouflage themselves into society, obscuring a likely diagnosis of ASD, even though there may be other indications of the condition. Specifically, while these skills are not representative of TD females, they may be superior to those characteristically expressed by a male with autism. As such, females on the spectrum still exhibit social deficits compared to TD females, but display relative strengths in this area compared to males on the spectrum. Wing’ s hypothesis suggests that females with ASD adapt to and imitate appropriate social skills, allowing them to assimilate into neurotypical social circles. Attwood [9] reports that clinically he finds females with ASD utilise cognitive skills to respond to social situations. Similarly, Kopp and Gillberg [37] describe cases of females who clearly demonstrate autistic-like behaviours but did not fully meet criteria for ASD or Asperger Syndrome, as specified at that time (by the Diagnostic and Statistical Manual of Mental Disorders Third Edition revised). These females are reported to be a diagnostic anomaly whereby their social profile was not at all similar to traditional descriptions of autistic social behaviour [37].

Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders: A Systematic Review and Meta-analysis

J Autism Dev Disord (2014) 44:627–635
Patricia J. M. Van Wijngaarden-Cremers, Evelien van Eeten, Wouter B. Groen, Patricia A. Van Deurzen, Iris J. Oosterling, Rutger Jan Van der Gaag

The specific features that accompany girls with ASD and that differ from boys are increasingly recognized. Girls with ASD have better imaginative play than affected boys (Knickmeyer et al. 2008), show more interest in social relations (Attwood 2007) and may have more socially accepted special interests (horses, dolls, pop stars), characteristics which might mask their ASD (Kopp and Gillberg 1992). Further, parents report that their daughters with ASD have problems establishing and maintaining adequate peer relationships (Holtmann et al. 2007). In an effort to facilitate the screening and detection of ASD in girls, a new screening tool ‘The autism spectrum screening questionnaire-revised extended version (ASSQ-REV)’ is in development (Kopp and Gillberg 2011). The ASSQ-REV is sensitive to female features of ASD.