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Can Autism be confused with schizophrenia?

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Can Autism be confused with schizophrenia?

The term autism was first used by the Swiss psychiatrist Eugen Bleuler in 1919 to describe a withdrawal from reality with a pathological predominance of inner life. The term autism was included within his description of dementia praecox, the original term for schizophrenia. In the first edition of The Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association 1952), autism was classified as an expression of childhood schizophrenia. It was not until the third edition in 1980 that autism was conceptualised as an independent disorder. A recent meta-analysis has indicated that around 6% (range 4-12%) of autistic adults have a Schizophrenia Spectrum Disorder (SSD) (Marin et al., 2018), with a prevalence of SSD in the general population of 1.1% (Rossler et al., 2005).

The differential diagnosis is one of the most difficult and complex diagnostic challenges and requires a high level of expertise in both areas. Clinicians involved in diagnosing autism and schizophrenia often come from different backgrounds and use different diagnostic methods. Similarities between both disorders can lead to misdiagnosis and inappropriate treatment. This article will explore the resemblances and differences.

Screening instrument

A new screening questionnaire is currently being developed to differentiate between autism and schizotypal disorder (SD). The SchiZotypy Autism Questionnaire (ZAQ) has 134 items, and when the research is completed, it will have a cut-off score and contribute to more effective discrimination between autism and SD (Parvaiz et al. (2023).

Diagnostic criteria for schizophrenia

The diagnostic criteria for Schizophrenia, according to DSM 5 TR (APA, 2022), include delusions, hallucinations, disorganised speech and behaviour and diminished emotional expression or avolition.

Delusions

The idiosyncratic beliefs of an autistic person can be confused with the delusional ideas of a person who has schizophrenia. However, in schizophrenia, delusions do not follow logical reasoning, whereas in autism, the beliefs are based on logical reasoning that is easy to follow. Clinicians recognise that severe depression and other mood disorders, such as bipolar disorder and anxiety disorders, can sometimes lead to psychotic features and mood-congruent delusions (Ghaziuddin, 2005a); for example, a person with severe depression may develop auditory hallucinations that are related to the depression, for example, voices telling the person to kill themselves, but there can be a qualitative difference from the voices associated with schizophrenia.

We now have a cognitive model for the emergence of delusional beliefs in autistic adults (Abell & Hare, 2005). Fundamental to these beliefs are cognitive deficits in executive functions, autobiographical memory and Theory of Mind.

A characteristic of autism is having special interests or passions and cognitive rigidity.  The interests may involve collecting objects or information, but some interests could be interpreted as indicating schizophrenia. We knew an autistic adult who had an intense interest in medieval church law and, due to his reading of obscure religious texts, made the logical decision that the current Pope was illegitimate. He was determined to travel to the Vatican to denounce the Pope based on the evidence he had carefully analysed and collated. There were no accompanying signs of schizophrenia, but he was admitted to a secure psychiatric hospital and discharged when he discovered a replacement interest in computer games.

One of the compensatory mechanisms for an autistic person, who may achieve limited social inclusion and acceptance, is to create a fantasy life that can include imaginary friends and imaginary worlds in which he or she is socially successful and popular. The contrast between the real and imaginary world can become quite acute during adolescence. Under extreme stress, the autistic adolescent may create a fantasy world that becomes not simply a mental sanctuary and source of enjoyment but a cause of concern to others, that the distinction between the fantasy world and reality is becoming blurred. A tendency to escape into one’s imagination as a compensatory mechanism can be interpreted as a delusional state of mind.

An autistic person may develop what appear to be signs of paranoia, potentially indicative of the delusions associated with schizophrenia, but this may be an understandable response to authentic aversive social experiences. Autistic children and adolescents encounter greater bullying and teasing than their peers. Once another child has deliberately tormented an autistic child, any subsequent confusing interaction with that non-autistic child can cause the autistic child to assume that the interaction was intentionally hostile. In addition, the extraordinary hearing abilities associated with autism can enable an autistic person to hear derogatory comments about them spoken at some distance or in another room, which are spoken with the assumption that their comments would be inaudible. Bullying and derogatory comments can eventually lead to long-term feelings of persecution and distrust and contribute to social withdrawal. The retreat to the safe sanctuary of a bedroom can resemble the social withdrawal associated with the prodromal stage of schizophrenia.

One of the concerns during a diagnostic assessment for schizophrenia in an autistic person is differentiating between the anticipated consequences of an impaired or delayed Theory of Mind and the paranoia and persecutory delusions associated with schizophrenia. A research study examined the potential link between impaired or delayed Theory of Mind and paranoia in young autistic adults (Blackshaw et al., 2001). An incident such as being ignored by a friend could be conceptualised in terms of the situation (he did not see you, was in a hurry, etc.), which uses the circumstances as an explanation, or it could be conceptualised in terms of his mental intentions (he did not want to talk to you, or he wanted to make you feel embarrassed or ignored). The study used a series of tests and questionnaires to measure the degree of impaired Theory of Mind and paranoia.  The autistic participants in the study scored lower on tests of Theory of Mind and higher on measures of paranoia than non-autistic controls. However, an analysis of the results of the study found that the paranoia was due to impaired Theory of Mind abilities and was qualitatively different to the characteristics of paranoia observed in people with a diagnosis of schizophrenia. The paranoia was not a defence strategy, as occurs in schizophrenia, but due to confusion in understanding the subtleties of social interaction, intentions and social rules.

Hallucinations

Sensory sensitivity associated with autism can be misinterpreted as hallucinations (Marin et al., 2018). The Sensory Perception Questionnaire (SPQ) was designed to explore the sensory perception of autistic adults (Tavassoli et al., 2014), and the questionnaire includes items such as:

I would be able to hear the sound of a leaf blown by the wind on a quiet street.

I can hear electricity humming in the walls.

I would be able to hear the sound of a vacuum cleaner from any room in a two-story building.

I would be able to smell the smallest gas leak from anywhere in the house.

I would be the first to hear if there was a fly in the room.

I would be able to smell the difference between most men and women.

I can see dust particles in the air in most environments.

I would detect a new smell in my house instantly before anyone else.

Non-autistic individuals would not perceive these sensory experiences and could accuse an autistic person of experiencing a hallucination.

We have noted that some autistic children and adults tend to vocalise their thoughts, unaware of how confusing or annoying this can be to others. The thought vocalisation can occur as a means of problem-solving, with some adolescents stating that they can improve their thinking by talking to themselves or have difficulty ‘disengaging mind from mouth’ when thinking. Such speech may occur out of a social context; the content is often a replay of the day’s conversations to understand the various levels of meaning or as a rehearsal of what to say for some future occasion. When lonely, the autistic adolescent can talk aloud to an imaginary person or friend and is not necessarily engaged in a dialogue in response to an auditory hallucination.

We know that many autistic children and adults think in pictures (Grandin, 1995), and when we enquire whether such children have an inner, conversational voice to help them manage emotions or situations, they are often bewildered and state that they do not have an inner voice or conversation within themselves when thinking. This characteristic is probably due to a delay in the self-reflection aspects of Theory of Mind. Non-autistic children achieve this ability when they are about five years old. However, during adolescence, this attribute can ‘switch on’ for the first time for an autistic teenager who then reports having voices and conversations in his or her head. This could be interpreted as a sign of schizophrenia. It is essential to distinguish between an inner voice as a natural aspect of thought and problem-solving and the auditory hallucinations of schizophrenia.

Disorganised speech

Autism is associated with problems with the pragmatic and semantic aspects of language, such as conversational clarification and repair, which can include a tendency to switch topics that can confuse the other person (Paul et al., 2014). This characteristic could be interpreted as evidence of the speech disorder associated with schizophrenia. If in doubt as to what to say, the autistic person may change the topic to something they know about and would prefer to talk about and may not perceive how confusing this would be for their conversational partner.

Another problem with the semantic aspects of language that occurs with autistic individuals is making a literal interpretation. A psychiatrist may ask a question such as, ‘Do you hear voices?’ to which Wen Lawson, who is autistic, replied, ‘Yes’ – the correct answer based on a literal interpretation of the question (Lawson, 1998).  He heard voices of people talking around him every day. His answer contributed to the psychiatrist’s opinion that he had schizophrenia.

Diminished emotional expression or avolition

Autism is associated with emotional dyskinesia, such that there may be limited facial expressions of emotions and being perceived by others as having a ‘wooden’ face (Attwood, 2015). There is also an association with alexithymia, which is a lack of words for emotions. These characteristics could contribute to the impression of diminished emotional expression. Avolition is the inability to initiate or sustain purposeful movement, and autism is associated with catatonia, which was originally recognised and described in schizophrenic patients (Shah, 2019).

Co-occurrence of schizophrenia and autism

Some of the characteristics of schizophrenia are central to the differential diagnosis, such as a later onset and a period of gradual deterioration before positive psychotic symptoms emerge. An exploration of early childhood may confirm that the characteristics considered as evidence of schizophrenia have been persistent throughout childhood and early adolescence.

The superficial similarities between some of the characteristics of autism and schizophrenia do not imply that an autistic person is ‘immune’ from schizophrenia. We have known autistic people who develop unequivocal signs of schizophrenia, which has been confirmed by research (Ghaziuddin, 2005a; Stahlberg et al., 2004). However, we need research on the most effective treatments for an autistic person who develops schizophrenia in terms of medication, psychological therapy and support and best practice guidelines (Foss-Feig et al., 2020).

In our extensive clinical experience, we have seen families with an autistic child who have a relative diagnosed with schizophrenia, an association confirmed in the research literature (Ghaziuddin, 2005b). In retrospect, we cannot be sure if the relative genuinely had schizophrenia or the characteristics of autism that resembled schizophrenia.

Before our current understanding of autism, an autistic adult with intellectual and language abilities within the normal range experiencing what would have been considered a ‘nervous breakdown’ would have been referred to a psychiatrist who would not have known about autism.  They may have received a diagnosis of atypical or undifferentiated schizophrenia (Perlman, 2000). Anti-psychotic medication would not be as effective as expected and primarily act as sedation. Electro Convulsive Therapy (ECT) and even leucotomy may have been used for a patient whose signs of schizophrenia were not responding to antipsychotic medication in a psychiatric hospital.

Tony obtained his clinical qualifications during the last days of the large mental hospitals around London that accommodated thousands of long-term psychiatric patients. With hindsight, he recognises that some of the patients in the old institutions with a diagnosis of atypical schizophrenia would today be diagnosed as autistic. The diagnosis of schizophrenia was a diagnostic label to justify admission and inpatient care (Schalkwyk et al., 2015). If such individuals are now residents in community psychiatric services, they may benefit from a re-assessment by a specialist in autistic adults.

A recent study of the prevalence of autistic patients in American psychiatric hospitals found a prevalence of 10%; almost all were diagnosed as having schizophrenia (Mandell et al., 2012). Psychiatric hospitals are not ‘autism-friendly’ in terms of staff knowledge of autism and adapting the environment to accommodate aspects of autism, such as sensory sensitivity, need for solitude and personal space and being emotionally sensitive to the distress of other patients.

We are concerned about the limited training and supervised clinical experience of adult psychiatrists in the diagnosis of autism. This is particularly relevant when considering the high level of autism associated with a range of psychiatric disorders, such as depression, anxiety, substance abuse, eating disorders and schizophrenia.  A recent study in Sweden screened new patients referred to an adult psychiatric outpatient clinic for autism. The prevalence of autism in this population was estimated as at least 19% and possibly up to 35%, two-thirds of whom had never been previously assessed for autism (Nyrenius et al. (2022).

Conclusion

Autism was originally conceptualised as an expression of schizophrenia and subsequently recognised as a distinct and separate condition. However, there are aspects of autism that could be confused with schizophrenia, and we must ensure that clinicians are trained and experienced in the differential diagnosis.

References

Abell and Hare (2005) Autism 9

American Psychiatric Association The Diagnostic and Statistical Manual of Mental Disorders (1952, 1980 and 2022)

Attwood (2015) The Complete Guide to Asperger’s Syndrome London, Jessica Kingsley Publishers.

Blackshaw et al. (2001). ‘Theory of Mind, causal attribution and paranoia in Asperger syndrome.’ Autism 5,147-163

Bleuler, (1911) dementia praecox oder Gruppe der Schizophrenien. Handbuch Der Psychiatrie.

Foss-Feig et al., (2020) Schizophrenia and other Psychotic Disorders in Autism Spectrum Disorder, In White, Maddox and Mazefsky (Eds) The Oxford Handbook of Autism and Co-Occurring Psychiatric Conditions, Oxford, Oxford University Press

Lawson, W. (1998) Life Behind Glass: A personal account of Autism Spectrum Disorder. London: Jessica Kingsley Publishers.

Ghaziuddin, M. (2005a). Mental Health Aspects of Autism and Asperger Syndrome. London: Jessica Kingsley Publishers.

Ghaziuddin, M. (2005b). ‘A family history study of Asperger syndrome.’ Journal of Autism and Developmental Disorders 35,

Grandin (1995) Thinking in Pictures New York, Doubleday.

Mandell et al. (2012) Autism 16.

Marin et al. (2018). Prevalence of schizophrenia spectrum disorders in average-IQ adults with autism spectrum disorder. Journal of Autism and Developmental Disorders 48

Nyrenius et al. (2022). Journal of Autism and Developmental Disorders 52.

Parvaiz et al. (2023). BMC Psychiatry 23

Paul et al. (2014). Communication in Asperger’s syndrome. In: Asperger’s syndrome: Assessing and Treating High-Functioning Autism Spectrum Disorders McParland, Klin and Volkmar (Eds) The Guilford Press, New York.

Perlman, L. (2000). ‘Adults with Asperger disorder misdiagnosed as schizophrenic.’ Professional Psychology: Research and Practice 31,

Rossler et al. (2005). European Neuropsychopharmacology 15.

Shah (2019) Catatonia, Shutdown and Breakdown in Autism London: Jessica Kingsley Publishers.

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

Stahlberg et al. (2004) ‘Bipolar disorder, schizophrenia and other psychotic disorders in adults with childhood-onset AD/HD and/or autism spectrum disorders.’ Journal of Neural Transmission 111, 891-902.

Tantam, D. (2000) ‘Adolescence and adulthood of individuals with Asperger Syndrome.’ In A. Klin, F. Volkmar and S. Sparrow (eds) Asperger Syndrome. New York: Guilford Press.

Tavassoli, Hoekstra and Baron-Cohen (2014) Molecular Autism 5:29

Autism and Ehlers Danlos Sydrome

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Autism and Ehlers-Danlos Syndrome

Researchers and clinicians in the autism area have known about the association between hypermobility and autism for a long time, and hypermobility is one common symptom of Ehlers-Danlos Syndrome (EDS). In this week’s blog, we discuss what EDS is, the association between autism and EDS, and why knowing about EDS may be helpful. 

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is a group of disorders that are genetic, and affect the connective tissues making them weak, primarily the skin, joints, and blood vessel walls. There are 14 different types of EDS, and the most common one, hypermobile EDS (hEDS), is the one most commonly diagnosed with autism (Kindgren, Quinones Perez & Knez, (2021). Many people have overly flexible joints and may be diagnosed with a hypermobility spectrum disorder (HSD), but EDS comes with a whole range of other issues, which are well-summarised by a lead researcher in the area, Emily Casanova and her colleagues (2020):

  • overly stretchy skin, where the weak connective tissue allows the skin to stretch more than usual;
  • fragile skin that does not heal quickly or well heal when damaged, and stitches in a wound may tear and leave a thin, crinkly scar;
  • chronic pain, usually in the joints;
  • hyposensitivity (less sensitivity) to proprioceptive (where the body is in space, allowing movement and force) and vestibular (where the head is in space, allowing movement to be co-ordinated with balance) input;
  • joints that are easily dislocated;
  • gastrointestinal disorders;
  • cardiovascular conditions (i.e. in Vascular EDS);
  • Mast Cell Activation Disorder (MCAS) – symptoms of this disorder include a lack of mental clarity that impacts on learning new information, word finding, cognitive processing and difficulties regulating emotions;
  • Postural Orthostatic Tachyardia Syndrome (POTS) -symptoms include dizziness, feeling faint, especially after getting up quickly, sensitivity to heat, palpitations, and chest pain with no heart condition:
  • Autoimmune system disorders, such as coeliac disease, lupus and multiple sclerosis.

How do I find out if I have EDS?

There is no quick screening test for EDS and the diagnostic criteria changed in 2017. This is causing some confusion, and there is a general lack of information about EDS in the community and among health professionals. However, if you are concerned that you or a loved one may have EDS, the first step is to visit your GP who will take a family history and conduct a physical exam using the Beighton Scoring System, which essentially measures joint mobility. If your GP determines that EDS is a possibility, you will be referred to a rheumatologist or geneticist for genetic testing via a blood test. It is worth asking for a medical specialist who specialises in EDS since EDS can be difficult to diagnose.

What is the connection between EDS and autism?

Firstly, there seems to be a connection between autism and EDS because the incidence of EDS in autistic people is higher than in non-autistic people. EDS is considered uncommon because it occurs in less than 1% of the population. Research estimates place the prevalence at between 0.01% and 0.02% of the general population, but clinicians believe that the figure is higher, i.e. greater than 0.05% or 1 in 2000 people (Marshal & Piller, 2022). Whilst there is no research on the prevalence of EDS in the autistic population, Kindgren and colleagues (2021) found that the incidence of autism in their sample of children with EDS or HSD was 6%. This incidence of autism is much higher than the latest prevalence figures for autism in a large sample of 8-year-old boys recently released from the US Centers for Disease Control (2023) which was 2.6%, indicating a strong association between the two conditions.

It is not known why autistic people are more likely to have EDS, but there is speculation that since collagen and other connective tissue are part of the foundation of neurological tissue, weaker connective brain tissue may be causative of autism for some autistic people (Castori & Voermans, 2014).

Mothers with EDS or HSD had higher rates of autistic children than mothers who did not have EDS, and similar rates to autistic mothers (Casanova et al, 2020). This data suggests that there may be a genetic link between the conditions. Genetic data indicates that there are similarities between the two conditions at the molecular, cellular and tissue levels as reviewed by Casanova and her colleagues (2020). These authors propose that hereditary connective tissue disorder may represent a subtype of autism, but the prevalence of this subtype is unknown and further research is needed.

Another association between EDS and autism is the large symptom overlap. The following is a list of symptoms that commonly occur in both conditions:

  • Learning disorder.
  • Developmental coordination disorder.
  • Tourette’s syndrome.
  • Sensory issues, especially proprioceptive and vestibular differences, and a different perception of pain.
  • Mental health issues, including anxiety, depression, bipolar disorder, eating disorders, and suicidal behaviours.
  • Autonomic nervous system dysregulation, usually chronic sympathetic hyperarousal and parasympathetic under arousal.
  • Sleep disorders.
  • Autoimmune disorders.

Implications of the association between EDS and Autism

A recommendation from research to date is to integrate the Beighton Scoring System into a standard physical assessment for autistic people with their GP (Casanova, 2020). Those autistic individuals who demonstrably have generalised joint hypermobility could then be referred for further genetic testing and assessments.

Being autistic and discovering that one has EDS can be very helpful in the journey toward self-discovery, providing an explanation for ongoing unexplained symptoms, such as hypermobility, low tone, motor clumsiness, pain, fatigue and other symptoms as listed above. Clinically, we have found that the journey toward a diagnosis of EDS is commonly torturous and long, but ultimately satisfying for the person when a diagnosis is made because it leads to accurate explanations, treatment and accommodations. The person often feels vindicated that their symptoms were not “all in their head” or manifestations of poor character or stamina, (which have often been their own perceptions due to ill-informed reactions from others) but instead have a demonstrable physical and genetic base.

A potential benefit of knowing one has EDS is that treatments found to be of assistance for EDS could then be made available for the autistic person, including occupational therapy, physiotherapy, and possibly certain medications for an atypically functioning autonomic nervous system. For example, the use of beta blocker, propranolol, has been used with some success for autistic individuals, but more research is needed. A treatment meeting a significant success for treating an atypically functioning ANS in autistic individuals is low-frequency, repetitive transcranial magnetic stimulation (rTMS; Casanova et al, 2014; Hakim et al, 2017).

Lastly, more research on the associations between EDS and autism may yield further understanding on the suggested autism/EDS neuro phenotype, which will ultimately lead to more specific recognition, research and treatments/accommodations for this phenotype and thus very real benefits for the autistic person with EDS.

Where to from here?

There is still much to learn about the association between EDS and autism. For more resources on EDS, we recommend:

https://www.ehlers-danlos.com/about-us/

https://www.ehlers-danlos.org/

https://www.ehlers-danlos.com/affiliate-and-support-group/eds-australia-national-support-group/

References

Casanova, M.F.; Hensley, M.K.; Sokhadze, E.M.; El-Baz, A.S.; Wang, Y.; Li, X.; Sears, L. (2014). Effects of weekly low-frequency rTMS on autonomic measures in children with autism spectrum disorder. Front. Hum. Neurosci., 8, 851.

Casanova EL, Baeza-Velasco C, Buchanan CB, Casanova MF. (2020). The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. J Pers Med.;10(4):260. doi: 10.3390/jpm10040260. PMID: 33271870; PMCID: PMC7711487.

Castori, M. & Voermans, N. C. (2014). Neurological manifestations of Ehlers-Danlos syndrome. Emergency Medicine Journal: EMJ, 25(3), 175-176.

Hakim, A.; O’Callaghan, C.; De Wandele, I.; Stiles, L.; Pocinki, A.; Rowe, P. (2017). Cardiovascular autonomic dysfunction in Ehlers-Danlos syndrome—Hypermobile type. Am. J. Med. Genet. Part C Semin. Med. Genet. 175, 168–174.

Kindgren E, Quiñones Perez A, Knez R. Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study. Neuropsychiatr Dis Treat. 2021 Feb 10;17:379-388. doi: 102147/NDT.S290494. PMID: 33603376; PMCID: PMC7882457.

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.

Marshall, T.J.& Piller, A. (2022). Ehlers-Danlos Syndrome and Its Comorbidities as a Co-Occurring Health Issue in Autistic People, Autism Spectrum News, Summer Edition. https://autismspectrumnews.org/ehlers-danlos-syndrome-and-its-comorbidities-as-a-co-occurring-health-issue-in-autistic-people/

Tantam, D., Evered, C. and Hersov, L. (1990) ‘Asperger’s Syndrome and Ligamentous Laxity.’ Journal of the American Academy for Child and Adolescent Psychiatry, 29, 892-896.

Signs of Autism when first meeting a client

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Signs of Autism When First Meeting a Client

This blog is for clinicians, therapists, and counsellors to help identify the characteristics of autism in a client who has not previously been considered as autistic. We describe the signature characteristics of autism that may be apparent when first meeting a client or over several appointments when exploring their developmental history and profile of abilities. The blog is based on our extensive clinical experience and the formal diagnostic criteria for autism spectrum disorder (APA 2022).

Prevalence and pathways

According to the Centers for Disease Control and Prevention (CDC), the prevalence of autism in 2022 was estimated as one in 44 eight-year-old children. However, this is a conservative estimate, as many autistic adults camouflage and supress their autistic characteristics in social situations or choose a career that minimises the effects of autism, a form of compensation. Camouflaging and compensation may delay professional recognition of autism until the adult years.

There are many pathways for an autistic person to seek psychological, psychiatric, or mental health team support or counselling for career and relationship issues. We recognise that 79 per cent of autistic adults meet criteria for a psychiatric disorder at least once in their lives (Lever and Geurts 2016). The most common concerns are for high levels of anxiety and episodic depression. Other pathways are needing assessment and therapy for trauma, an eating disorder, borderline personality disorder, attention deficit disorder, gender dysphoria, addiction, and schizophrenia. There may also be issues regarding achieving and maintaining friendships, employment, or a long-term relationship. 

As the conversation with the client develops, the characteristics of autism may slowly emerge in their conversational abilities, social development, emotion communication, cognitive profile, ability to cope with change, interests, and sensory sensitivity.

Conversation abilities

The client’s conversation ability, while often demonstrating sophisticated vocabulary and depth of knowledge, may also include subtle difficulties with the pragmatic aspects of language, an unusual prosody, a tendency to make a literal interpretation, and difficulty with the comprehension and expression of nonverbal communication. The pragmatic aspects include the degree of reciprocity or ‘balance’ in the conversation: the person may talk too little or too much. When too little, there will need to be encouragement to say more than a few words in reply to a question and to provide some degree of elaboration and personal examples that illustrate a specific topic. When talking too much, the client’s conversation may be perceived as a one-sided monologue. There can be a difficulty in determining when the person has completed what they want to say, for example, failing to give eye-contact to indicate your turn to speak. In contrast, the client may frequently interrupt their conversation partner to make a comment or correct an error, oblivious of the signals not to interrupt, or that the person may be offended by the correction. 

There may also be difficulties knowing how to maintain and repair a conversation by seeking clarification and more information, as well as modifying language according to the social context. The client may also engage in too much or too little disclosure of personal or confidential information. 

Prosody may be unusual in terms of the speed, volume, rate, rhythm, and ‘melody’ of speech. There may be a lack of vocal tone and volume to indicate emotion and key words, and an unusual placement of stress and precise intonation. There can be a tendency to take a literal interpretation, which may become apparent when the other person uses idioms, sarcasm or ‘figures of speech’. 

One of the central characteristics of autism is a difficulty focusing on and reading nonverbal communication, which can become conspicuous during a conversation. There may be unusual aspects of eye-contact in terms of eye-contact frequency, duration, and ability to read another person’s facial expressions in order to modify the conversation. The person may be listening but not looking at the face of their conversation partner at key points in the interaction when eye-contact would not really be anticipated. One adaptation to autism is to appear to be looking at the person’s face, but instead focusing on their ears or forehead rather than their eyes, thus failing to determine what their conversation partner is thinking or feeling. And sometimes, even though there may be a focus specifically on someone’s eyes, there may still be difficulty reading facial expressions. As one autistic adult said, “People give messages with their eyes, and I don’t understand them.”

The difficulty reading nonverbal communication can occur for both conversation partners; the client’s facial expressions may be perceived as ‘still’ or ‘wooden’, and thus difficult to read. Their gestures may be limited or ‘stylised’, sometimes mimicking the gestures and posture of the conversation partner. There may be less use of nodding agreement, reciprocal smiles or complimentary sounds of compassion and interest. 

Social abilities

An exploration of social abilities and experiences may reveal difficulty making and keeping friends, delayed Theory of Mind abilities, a history of being bullied at school and work, and evidence of relatively effective but superficial social abilities. 

During childhood, there is likely to have been a time when the client first recognised that their social and friendship skills were not as advanced and complex as those of their peers. There may have been, and continue to be, a preference for solitary rather than social activities. During childhood and adolescence, there would have been a desire to establish and maintain friendships without a complete or realistic idea of what friendship entails. It is through extensive friendship experiences that we not only learn relationship skills, such as the art of compromise and conflict resolution, but also recognise the need for emotional as well as practical support. 

Theory of Mind is a psychological term to describe the capacity to understand and successfully relate to other people by determining what they may be thinking or feeling, and their mental state, knowledge, and intentions. This includes recognising that another person’s mental state may be different from one’s own. To develop Theory of Mind abilities, it is essential to be able to accurately read nonverbal communication and social context to infer someone’s thoughts and feelings and modify social behaviour accordingly. 

Many autistic adults have experienced rejection, humiliation and bullying from peers, especially in the high school years. Some of the incidents have been extremely distressing and traumatic. There is also an association between autism and all forms of abuse, which may lead to post traumatic shock disorder.

Social expressions of autism

A common perception of an autistic person is someone who considers social interactions as indecipherably complex, overwhelming and stressful, and chooses to be alone but does not necessarily feel lonely. However, there are autistic children and adults who are highly motivated to socially engage but may not be able to read the subtle social signals and social conventions of what to say and do. A metaphor to describe this expression of autism is that of a driver who does not see the traffic signals (nonverbal communication), or abide by the traffic code (social conventions). Their social behaviour may be perceived as intrusive or intense, such that the autistic person becomes bitterly disappointed that conversations, friendships and relationships are short lived. 

An adaptation to autism that creates the impression of social competence is for the person to acquire social abilities by supressing their autistic characteristics and instead observe, analyse, and imitate social behaviour, thus creating a social ‘mask’ and false persona. This adaptation may start in early childhood by avidly watching socially popular children, searching for patterns of social behaviour, and copying gestures, speech, interests, and topics of conversation. This adaptation is described as social ‘camouflaging’. 

Camouflaging requires the ability to suppress typically autistic behaviours, such as gently rocking to self-soothe, or talking excessively about a special interest, and instead appear interested in other people, making appropriate empathic gestures and comments: the creation of a social mask. While social success and acceptance may be achieved this way, the psychological cost is mental exhaustion in terms of being drained of mental energy by the effort of socialising. There is also the potential for the development of depression from energy depletion and the inability to express the authentic self.

During the initial conversation with the client, there may be the expected level of reciprocity and mutual reading of nonverbal communication. However, this may be due to their being very proficient and experienced in camouflaging their autistic characteristics. These abilities may have been achieved by intellectual analysis and practice rather than intuition. If the client has the autistic characteristics of difficulty coping with change, interests that are unusual in intensity or focus, and sensory sensitivity, it would be appropriate to compliment the client on their conversation and social skills, but also to ask how such social proficiency was achieved. An autistic client would describe using a range of sources of social information including observing, analysing and copying peers, watching television programmes (especially soap operas) to memorise scripts and responses, and seeking information on reading nonverbal communication and the art of conversation from literature, apps and YouTube. They may also rehearse their social and conversation scripts, or have a family member who provides social guidance.

Another social adaptation or compensation for autism during childhood is for autistic girls to prefer the company of boys, since their social dynamics are relatively simpler. They may feel safer and less likely to be bullied by boys, who often enjoy playing with a ‘tomboy’. An autistic adult may compensate by choosing a career that does not require much social engagement, such as a wildlife ranger; or they may develop an interest and talent in the arts, becoming an author, artist, musician, singer, or multi-linguist. Social eccentricities may be accepted and accommodated due to being valued by peers who recognise and admire a particular talent.

Emotion communication

Autism is associated with alexithymia, that is, the inability to focus attention on, recognise and accurately appraise, describe and moderate subjective emotions and body sensations, and then communicate those thoughts, sensations and emotions in words. Alexithymia is not exclusive to autism or a characteristic of all autistic adults but has been identified in at least 50 per cent of autistic adults, and in only 5 per cent of the general population (Kinnaird, Stewart & Tchanturia, 2019). Having alexithymia leads to a difficulty recognising internal emotional states, such that when asked ‘What are you feeling now?’, after some conscious thought, the reply may be, ‘I don’t know’. This is not being obtuse or evasive. There can be a genuine difficulty perceiving and converting internal states and emotions into speech. The full answer to the question would be, ‘I don’t know… how to mentally grasp the intangible emotions swirling in my mind, identify and label them accurately and communicate those feelings in speech so that you will understand’.

Another characteristic of alexithymia is to talk about experiences without reference to the emotional states of themselves and others. There is less spontaneous mention of emotions in conversation. This will affect autobiographical memory, such that an important event may be described primarily by the sequence of actions, rather than by the thoughts, feelings and intentions of others or themselves.

However, an autistic person is not oblivious to the emotional state of others, and may in fact be overly sensitive to another person’s negative mood. There appears to be a ‘sixth sense’ perception of someone’s anxiety, sadness or anger, which can lead to avoidance of some social situations or specific people due to the risk of being ‘infected’ by their distress, and being unsure how to help them. 

Having difficulty identifying and communicating internal emotional states can result in emotions increasing in intensity without sufficient cognitive evaluation and regulation, eventually leading to these emotions being released explosively as a meltdown. The developmental history and current concerns may include emotional meltdowns that are explosions of anger and anxiety, or implosions of intense despair and suicidal ideation.

Cognitive abilities

Autism is a different way of perceiving and learning, and this can lead to a cognitive profile that includes an ability to perceive and develop systems and patterns, and also to identify errors and detail that may not be recognised by others. There can also be an ability to store and recall information, and to find solutions to problems that are elusive to colleagues or employers. This may lead to a successful career as a recognised expert in a particular career or profession.

Ability to cope with change

The diagnostic criteria refer to distress at small changes and coping with uncertainty, as well as a tendency to insist on sameness and a preference for routines and consistency. For an autistic adult, variety is not the ‘spice of life.’ 

Interests and talents

Throughout childhood and into the adult years there is a history of hobbies or interests that are unusual in intensity or focus. Each interest has a ‘use by date’ that may range from hours to decades. The interests are associated with intense enjoyment and may also function as a thought blocker for anxiety or sadness. They also provide a sense of identity and social connection with those who share the same interest. 

During conversation, the client may be somewhat subdued and quiet, appearing to be reluctant to engage. However, when the topic of conversation is the person’s interest, they suddenly become enlivened, engaged and eager to disclose their expertise: almost an alternative persona.

While alexithymia is a difficulty converting thoughts and feelings into speech, a successful adaption to alexithymia is to express thoughts and feelings through the arts. The autistic adult may have a recognised talent as an artist, musician, composer, or author. The inner world is vividly expressed through the arts.

There may be a talent in the caring professions, especially psychology and psychiatry. The propensity from childhood to observe and analyse others to facilitate social engagement may evolve into achieving formal qualifications and a successful career as a teacher, therapist, psychologist, paediatrician, or psychiatrist. Autism is often associated with the altruistic desire help alleviate suffering and increase knowledge and abilities. There may also be a talent understand and caring for animals.

Sensory sensitivity

There can be an extraordinary perception of sensory experiences from the outside world, or ‘exteroception’. Specific sounds, types of lighting, tactile experiences, aromas, and emotional states of others can be perceived at such an intensity that the experience is aversive. In contrast, there can be difficulty sensing the internal world, or ‘interoception’. There appears to be a mind and body disconnection. The autistic person may not experience hunger or thirst to the same degree as other people, and may not be aware of the increasing heart rate and breathing that indicate rising anxiety or anger.

Screening for autism and recommending a formal diagnostic assessment

At the end of the first consultation, or after several consultations, some, but not necessarily all of the signs of autism may gradually become apparent. The next stage is to consider asking the client to complete screening questionnaires specifically designed to identify the characteristics of autism in an adult. These include the Autism Social Quotient (Baron-Cohen et al 2001) for men and women, and the GQ-ASD for women (Brown et al 2020). If their scores on these instruments are above the designated cut off, then a referral or subsequent appointment for a formal diagnostic assessment is warranted. 

References

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

Baron-Cohen et al (2001) Journal of Autism and Developmental Disorders 31 5-17 Available on the Internet at www.autismresearchcentre.com/research

Brown et al (2020) Autism in Adulthood 2, 216-226 Available to download at www.tonyattwood.com.au forms and questionnaires

Kinnaird, Stewart & Tchanturia (2019) European Psychiatry 55, 80-89

Lever and Geurts (2016) Journal of Autism and Developmental Disorders 46: 1916-1930

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

PDA in Autistic Adults

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PDA in Autistic Adults

The term PDA (pathological demand avoidance) was first used by Professor Elizabeth Newson in the 1980s. It is a behavioural profile associated with avoidance of complying with requests and extreme agitation if demands are escalated. PDA was first recognised in autistic children, and further research identified associated features such as high levels of anxiety, lability of mood and impulsivity, surface sociability but a lack of social identity and a greater level of interpersonal skills and social manipulation than usually associated with autism (Newson et al., 2003; O’Nions et al., 2014).

Terms

There is currently some debate about terminology, especially the word pathological with alternative terms such as EDA, or extreme demand avoidance (Gillberg, 2014), DAP or demand avoidance phenomena (Woods, 2019) and the term PDA being changed by autistic individuals and PDA support groups to ‘pervasive drive for autonomy.’ There is also academic and clinical debate regarding classification and whether PDA should be considered a separate subgroup within the autism spectrum or a learned coping mechanism for the combination of high anxiety, ADHD and impulsivity, procrastination and impaired executive functioning and the social and sensory characteristics of autism. For simplicity, we will use the term PDA for this blog.

Screening instruments for adults

Egan, Linenberg and O’Nions (2019) have created and evaluated the Extreme Demand Avoidance Questionnaire – Adult or EDA-QA. There are 25 items in the self-report questionnaire, and these are ten of those items.

  • I am good at getting around others and making them do as I want
  • I seek to quibble and change rules set by others
  • I have a very rapidly changing mood
  • I am driven by the need to be in charge
  • I blame or target a particular person/persons
  • I have difficulty complying with demands and requests from others unless they are carefully presented
  • I obsessively resist and avoid ordinary demands and requests
  • I ensure any social interaction is on my own terms
  • I know what to do or say to upset particular people
  • I am unaware or indifferent to the differences between myself and figures of authority

The instrument was found to be both reliable and valid, and that PDA traits were partially related to ASD traits. The authors encourage other researchers to utilise the questionnaire to conduct further research into adult PDA.

Characteristics of adult PDA

White et al. (2022) used two online surveys with adults in the general population to explore the importance of autistic traits and anxiety as predictors of demand avoidance. They found that autistic traits and anxiety were unique and equally important predictors of demand avoidance. The study confirmed that EDA is linked to autism, with avoidance behaviours being anxiety driven.
We know that autism is associated with high anxiety levels. However, during and after puberty, the levels of constant and episodic anxiety can be unbearable and not resolved with prescribed medication and cognitive behaviour therapy. An autistic adolescent or adult may then resort to extreme behaviours to manage extreme anxiety levels, which includes achieving, by whatever means is effective, control over their daily life to avoid experiencing anxiety. Simple requests can make an autistic person feel anxious, out of control and harassed. There is a phobia or fear of demands (postulophobia).

A coping mechanism is to delay responding until the level of anxiety has naturally reduced, or the person has achieved greater cognitive control of their anxiety. This can include delaying tactics such as procrastination, negotiation, excuses for non-compliance and compliments to the person making the request to distract them. This would be stage 1 of avoiding demands.

If stage 1 strategies are ineffective, the second stage is the flight response to anxiety which involves being obnoxious, rude, and disrespectful to the person making the request. This is designed to make the person making the request go away and ‘flee’ the situation. The third stage is ‘fight’, that is, having a verbal fight or argument and an emotional explosion or meltdown. The meltdown will discharge the build-up of anxious energy and be an emotional ‘reset’.

All these reactions to requests consolidate avoidance behavior’s using negative reinforcement (decreasing or removing a negative outcome, in this case, unbearable levels of anxiety). However, there is another aspect of the response to anxiety, and that is ‘freeze’. Sometimes it may not be a question of consciously choosing not to comply with the request but being physically unable to. It is not ‘won’t’ but ‘can’t.’ The person knows what to do, it may even be to do something they want to do or is in their best interests and for someone they love or admire, but they are experiencing autistic inertia and ‘freeze.’

We also recognise that extreme demand avoidance may have similar features to other maladaptive coping mechanisms for anxiety, such as eating disorders, situational mutism, and self-harm.

The development of PDA in the adult years

Avoiding demands can broaden through childhood to a wide range of everyday situations, and responses to simple requests that others may not perceive as a demand, such as ‘Can you please pass me the newspaper?’ The person with PDA perceives these requests, which require a simple and momentary response, as overwhelming, and anxiety-provoking. The lack of compliance and avoidance strategies will lead to considerable distress and conflict within the family. There is increasing recognition of the genetic aspects of PDA, with the characteristics being identified within and between generations which will add to the conflict at home.

Elizabeth Newson and her colleagues were able to follow up on 18 adults with PDA, and all remained demand avoidant, with eight to about the same degree as in childhood, three more than in childhood and seven less. Thus, there are a range of outcomes, but the characteristics of PDA have the potential to be life-long (Newson et al., 2003). It should be noted that the 18 participants in the study could not benefit from the degree of understanding and support for PDA that is currently available. Our clinical experience is that PDA traits can decrease as the child moves through adolescence into adulthood, with the time between demand and meltdown becoming longer and the degree of distress less and greater cognitive regulation of anxiety.

Over time, there can be increasing insight into the effects of PDA on relationships and employment and the acquisition of a range of strategies to manage extreme anxiety and attempts to modify reactions. There can be improvements in self-regulation, communication, and ability to self-advocate, and creating a lifestyle with minimum demands.

However, there can be concerns when alcohol and illegal and misuse of legal drugs are used to reduce extreme anxiety, and we have known clients with PDA who have also developed drug dependency to manage their anxiety.

Home life

There can be difficulty coping with self-imposed and societal demands, such as personal hygiene and maintaining friendships and relationships and a tendency to break the rules, which can lead to conflict with the law. Trying to manage extreme anxiety and suppress demand avoidance can be exhausting, effecting energy levels and potentially contributing to depression. There may be great reliance on parents or a partner for emotional support and practical support for impaired executive functioning. The PDA adult will also need regular downtime and solitude to restore energy, with benefits from having access to a demand-free space at home to retreat to.

Work-life

PDA characteristics can affect work life, with employers considering the person arrogant or undisciplined. There can be a disregard for authority and the work hierarchy, and it is often difficult for the person to work conventionally with their tendency to be ‘my way or no way’. There may be more success being self-employed or running their own business, so there are fewer issues with not feeling in control. There may be procrastination issues, difficulty completing projects and meeting deadlines, and responding appropriately to a line manager’s requests, such as being polite to customers. The PDA adult often feels trapped in a job and needs novelty. We have noted a history of many changes in employers and careers.

Strategies for PDA

Many strategies to cope with PDA in children will also apply to adults. This includes giving the person options and choices rather than directives. We also recommend using declarative rather than imperative language (Murphy, 2020), for example, instead of ‘You need to clean your mess in the bathroom’ (imperative) to ‘The bathroom needs to be clean and tidy’(declarative). Our experience is that declarative comments are more likely to achieve a positive response.

There can be consideration of distracting thoughts when initiating and completing a task, such as using role-play, for example, imagining being filmed doing the task for a documentary, or using mental games, or listening to a podcast to complete the activity on autopilot. These strategies may act as an effective thought blocker for anxiety.

We also recommend joining a PDA group on Facebook and online to seek support from those who share the same daily challenges.

References

Egan, Linenberg and O’Nions (2019). Journal of Autism and Developmental Disorders 49

Gillberg C. (2014). Commentary: PDA Journal of Child Psychology and Psychiatry, 55

Newson E, Le Maréchal K, & David C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders Archives of Disease in Childhood; 88

O’Nions E, Christie P, Gould J, Viding E, Happé F (2014). Journal of Child Psychology and Psychiatry 55

White et al. (2022). Journal of Autism and Developmental Disorders 51

Woods R. (2019). Good Autism Practice 20

Resources

www.pdasociety.org.uk

Books

Declarative Language Handbook (2020) Linda K. Murphy ISBN: 9781734516203

Being Julia: A Personal Account of Living with PDA (2021). By Ruth Fidler and Julia Daunt. Published by Jessica Kingsley Publishers.

PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns (2019). Ed. Sally Cat. Published by Jessica Kingsley Publishers.

PDA Paradox; The Highs and Lows of My Life on a Little Known Part of the Autism Spectrum. (2019). By Harry Thompson. Published by Jessica Kingsley Publishers.

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.

Autism and Substance Addiction

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Autism and Substance Abuse

We have seen an increasing number of autistic adolescents and adults with signs of substance addiction, usually alcohol but also illegal substances such as marijuana, amphetamines and opiates and the misuse of prescription medication such as benzodiazepines. Why are autistic individuals at risk of developing substance addiction? The simple explanation is to engage or escape reality and moderate intense emotions.

Engage reality

A fundamental characteristic of autism is difficulty socialising and subsequent social anxiety. Alcohol and marijuana can be used as a relaxant in social situations. The autistic person may find socialising easier when mildly intoxicated, with a sense of calmness and competence. An autistic adult explained Alcohol makes verbal communication easier (Brosnan & Adams, 2020). Unfortunately, the autistic person may depend on these substances to facilitate social engagement. An autistic adult explained: Alcohol is relaxing and provides happiness, and another autistic adult said that alcohol is A central solvent that my body chemistry has been missing. Alcohol is my cure for anxiety. Marijuana can have similar effects I smoke pot to make my anxiety and autism go away. It’s the only time I feel on the same wavelength as everyone else (Weir et al., 2021).

At the end of the working day, when a non-autistic person is exhausted and stressed, they may seek energy replenishment and relieve their tension via compassion, gestures of affection and conversation from a supportive person in their life. These interpersonal energy and emotion repair mechanisms may be less effective for an autistic person. Alcohol may be their preferred means of relaxation, and a daily routine of alcohol consumption becomes established.

Another characteristic of autism in adolescence is the tendency to be rejected by peers, engendering feelings of a lack of connection and not belonging to any specific group or culture. The acquisition and consumption of alcohol and drugs – easily available and the ‘currency’ of popularity and status – can provide membership in a sub-culture composed of others who also do not fit into conventional society. This group accepts those who are not popular. This sub-culture has clear rules and expectations regarding how to dress, talk and behave and has its own language and rituals. Friendships are formed, and the person is warmly welcomed, especially if he or she colludes with group members to acquire mood-altering substances, and the autistic group member avidly acquires knowledge on drugs from the Internet and becomes the respected expert for members of the group to consult on drug effects, dosage and interactions.

Many autistic adolescents and adults have extreme anxiety levels and describe trying to cope with racing thoughts, which are difficult to slow down, and ruminations, which are extremely difficult to block. Alcohol and drugs especially opiates and marijuana, can decelerate thoughts that are speeding out of control and block ruminations. 

Some medications prescribed to reduce anxiety, such as benzodiazepines, can themselves become addictive after several months, with the person developing increased tolerance, impaired cognitive abilities, memory problems and mood swings. There can also be a dangerous misuse of other prescription medications and substances as the person self-medicates for anxiety, with the potential for hazardous drug interactions and the very real danger of accidental overdose. There is also the risk of conflict with the law and entry into the Criminal Justice System (Attwood, 2019).

Another contributory factor for an autistic person to maintain substance addiction is ADHD. We know that most autistic individuals also have signs of ADHD which can lead the autistic addict to be impulsive and not consider the long-term consequences of drugs on themselves and their family, and want almost instantaneous relief from intense and unbearable emotions, especially anxiety. Psychological emotion regulation strategies such as cognitive behaviour therapy, mindfulness and Yoga take time and effort.

There are high levels of unemployment associated with autism, leading to boredom, frustration and a sense of uselessness and under-achievement. Being part of the drug culture can provide purpose and structure for the day. There is a sense of achievement in seeking and finding drugs and an opportunity to leave one’s accommodation and meet people within the drug culture.

Escape reality

The use of mind-altering substances can provide a sense of protection, ‘anaesthetising’ the person from the effects of past trauma, such as being bullied or being the victim of emotional, physical, financial, or sexual abuse.  Being in an emotionally safe ‘bubble’ creates a sense of emotional detachment. An autistic addict described self-medication as an escape from pain and genuine relief.

Alcohol, marijuana and illegal drugs seem to suppress or ‘switch off’ the frontal lobes, the thinking part of the brain. Autistic individuals need their frontal lobes to efficiently process social information and cognitively moderate emotions. When intoxicated, an autistic person may increase their autistic characteristics and have impaired decision-making, affecting their quality of life.

Research on autism and substance addiction

Rengit et al. (2016) confirmed our clinical experience that substance use for autistic individuals often alleviates anxiety and inclusion in a subculture. The association with autism, ADHD and substance abuse was confirmed by Butwicka et al. (2017). The same study found that substance use-related problems have been observed among 19%-30% of adult autistic clients in general clinical settings. A study of consecutive intake assessments at a substance use disorder clinic for young adults using a screening instrument for autism found that 20% had autistic characteristics (McKowen et al., 2021). 

A systematic review of relevant research by Ressel et al. (2020) suggested that up to 36% of autistic individuals have co-occurring issues with substance abuse. An online survey of over 500 autistic adults found that the rate of heavy episodic drinking was 54%, with the rate in the non-autistic population being 17%. (Brosnan and Adams 2020). The strongest motivations were for social reasons and to enhance positive feelings, and 45% indicated they would not seek support for their substance use, with barriers to support including that it would occur in an unfamiliar chaotic environment and anticipating being misunderstood and judged by rehabilitation staff.

What to do when there are signs of addiction

The first stage is to recognise the addiction, which may affect mental and physical health and family dynamics and potentially lead to criminal activities to pay for the substances. The person who has the addiction may lack insight into the depth of the addiction, failing to recognise their inability to cope without mind-altering substances. If there is recognition of the addiction, there nevertheless may be resistance to reducing the level of substances or engagement in the drug culture, as the person may not be able to conceptualise life without their support in regulating emotions and disengaging from the drug culture. The idea of ‘kicking the habit’ can be frightening because it involves the unknown and trusting the effectiveness of alternative emotion management and social engagement strategies.

The second stage is to address the dysfunctional use of substances. This may mean providing alternative prescribed and carefully administered, and supervised medication. Throughout this process, access to a clinical psychologist is beneficial to provide advice, treatment and support for anxiety management and fear of being able to cope without illegal or misuse of legal substances, to encourage the development of social skills, new social networks and a resilient sense of self.

While the diagnosis of autism may provide a rationalisation for the addiction, it must also be considered when accessing support and therapy services. There will be those who enter the treatment services for addiction who have undiagnosed autism; it is important that there is routine screening for autism in all new participants in rehabilitation therapy and services for addiction, not only to determine the possible reasons for the addiction but also, importantly, to modify the therapy according to the characteristics of autism.

Rehabilitation services often rely on social living and group therapy and provide limited personal space and solitude opportunities. An autistic client will benefit from a single room wherever possible. They will also need guidance and support in group therapy’s social and disclosure requirements due to the characteristics of alexithymia, that is, converting thoughts and feelings into conversational speech. In a rehabilitation service, reading social and interpersonal dynamics can be difficult for an autistic person as well as recognising social and personal boundaries, knowing when to talk and not talk in a group, understanding how to resonate with the experiences and emotions of fellow addicts, and acknowledging the relevance of self-disclosure in a group setting. Staff need to know of these autistic characteristics and must make appropriate accommodations.

A study by Helverschou et al. (2019) found that typical interventions for treating addiction are often unsuitable for autistic adults. They recommended regular staff education on autism and accommodating the characteristics of autism in group sessions. The study also affirmed the perception of autistic participants in therapy as being drug experts and providing advice to staff and fellow residents on drug doses and combinations of drugs. The research also identified a tendency for autistic individuals to end their drug use their own way and not follow a recommended reduction plan.

Our clinical experience confirms that sometimes the autistic person can decide to end an addiction without a therapeutic plan and support. This takes great determination and relies on one of the characteristics of autism: once a decision has been made, the person is unwavering in seeking a resolution and the desired outcome.

A recent survey of over 100 drug and alcohol therapists’ perceptions of current service provision for autistic clients found that most therapists had received no autism-specific training, with alcohol misuse as the most common presenting issue, and most therapists reported that treatment outcomes were less favourable for autistic clients (Brosnan & Adams, 2022). They found an eclectic approach to be the most helpful and psychodynamic least helpful. Autistic clients tended to lack insight into the therapeutic process, were resistant to therapy suggestions, considered therapists as not understanding them or had inferior intellect. The authors recommend a range of therapeutic adaptations, such as using plain language, a more structured and concrete approach, shorter sessions and using hobbies and interests as part of therapy and more written and visual information.

The stress of group engagement, accepting treatment models, and staff not understanding autism can lead to premature voluntary discharge from residential rehabilitation services. The autistic person may become convinced that such services can never be effective. Rehabilitation services need to become more autism-friendly, and psychologists and psychiatrists need to develop an addiction treatment model specifically designed for the characteristics of autism and reasons for substance addiction in collaboration with autistic adults who are or were addicted to substances.

Once the addiction seemingly ends, there is still the risk of relapse. It is important for the autistic person and their family members to accept lapses before there is complete and enduring freedom from addiction. It will be important that the person does not interact with previous drug associates, the associated culture and potential triggers. There will need to be support for stress and emotion management, encouragement to increase the network of social contacts and enjoyable social experiences, and the introduction of a new lifestyle and schedule of daily activities. Recovering from addiction is a long road, but the journey and destination may be lifesaving.

Resources

Jackson (2016). Sex, drugs and Asperger’s syndrome London, Jessica Kingsley Publishers

Kunreuther & Palmer (2018). Drinking, drug use and addiction in the autism community London, Jessica Kingsley Publishers

Regan (2015) Shorts: Stories about alcohol, Asperger syndrome and God  London, Jessica Kingsley Publishers

Tinsley & Hendrickx (2008). Asperger syndrome and alcohol: drinking to cope? London, Jessica Kingsley publishers

References

Attwood W.  (2019). Asperger’s Syndrome and Jail: A survival guide London, Jessica Kingsley Publishers

Brosnan & Adams (2020). Autism in Adulthood

Brosnan & Adams, (2022) Autism in Adulthood

Butwicka et al. (2017). Journal of Autism and Developmental Disorders

Helverschou et al. (2019) Substance Abuse: Research and Treatment

McKowen et al (2021) The American Journal of Addictions

Rengit et al. (2016) Journal of Autism and Developmental Disorders

Ressel et al. (2020) Autism

Weir et al. 2021 Lancet Psychiatry

Internet gaming and Autism

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Internet gaming and Autism

The parents of autistic teenagers and young adults are increasingly worried about how much time their son or daughter spends on Internet gaming. However, the autistic person may be worried that the amount of time they spend on Internet gaming could be reduced by their parents. Clinicians and parents may be concerned that a young autistic person’s interest in Internet gaming could evolve into addiction.

Gaming disorder or video game addiction is recognised worldwide. It has increased with the advent of broadband technology, games allowing for the creation of avatars, ‘second life’ games and MMORPGs (massive multiplayer online role-playing games). World of Warcraft has the largest MMORPG community online, and there have been studies confirming the addictive qualities of the game. Indeed, modern computer games have adopted aspects of the gambling industry, for example, purchasing Loot Boxes within the game.  The content of a Loot Box is unknown and purchased directly or available during play, with the gamer subsequently buying “keys” to redeem them.  Game developers see loot boxes as a way of generating ongoing revenue and keeping player interest in gaming through loot-box reward systems. This can contribute to the addictive nature of Internet gaming.

The diagnosis of Internet Gaming Disorder

The recent edition of the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, Text Revised, provides diagnostic criteria for Internet Gaming Disorder (APA 2022, pages 913-916). There are nine criteria, and confirmation by a clinician of five or more are likely to confirm the diagnosis. The nine criteria are:

  1. Preoccupation with Internet games, such that gaming has become the dominant activity in daily life.
  2. Withdrawal symptoms when Internet gaming is taken away.
  3. Tolerance – the need to spend increasing amounts of time engaged in Internet games.
  4. Unsuccessful attempts to control participation in Internet games.
  5. Loss of interest in previous hobbies and entertainment.
  6. Continued excessive use of Internet games despite knowledge of psychosocial problems.
  7. Has deceived family members, therapists, or others regarding the amount of Internet gaming.
  8. Use of Internet gaming to escape or relieve a negative mood.
  9. Has jeopardised or lost a significant relationship, job or educational or career opportunities because of participation in Internet gaming.

The DSM-5 work group reviewed more than 240 research articles and found some behavioural similarities between Internet gaming and gambling disorder and substance use disorders. The DSM-5 describes individuals with Internet gaming disorder as sitting at a computer and engaging in gaming activities while neglecting other activities and typically devoting 8-10 hours or more each day and at least 30 hours per week. The mean prevalence of gaming disorder among typical adolescent boys was estimated as 6.8% and adolescent girls 1.3%. A recent study of the prevalence of gaming addiction in autistic teenagers and young adults indicated that 9.1% reported symptoms over the cut-off for gaming disorder (Murray et al., 2022).

Research on gaming addiction and autism

A recent systematic review of the research literature on autism and video game use confirmed that autistic children, adolescents and adults are at greater risk of problematic video gaming than typical peers (Craig et al. 2021). The studies indicated that, on average, autistic individuals spend over 2 hours playing Internet games each day with a weekly average of 12-17 hours. This is below the level of gaming to confirm a formal diagnosis of Internet Gaming Disorder but greater than typical peers and paediatric guidelines. Autistic children also play more Internet games than their non-autistic siblings and spend more time playing Internet games than other extracurricular activities.

A study of over 100 autistic adolescents by Hirota, McElroy, and So (2021) identified that a characteristic of their Internet gaming was defensive and secretive behaviours and concealment of Internet use from their parents. The subsequent issues included the effects on school grades, decreased ‘healthy’ social engagements and neglecting household chores to spend more time online.

Research on autistic adolescents’ sense of self-identity included an analysis of the answers to the question. What do you enjoy most? The most enjoyable experience was access to technology and gaming (Clarke and Adams 2020).

Why do autistic individuals spend so much time on Internet gaming?

The reasons typical adolescents and young adults engage in Internet gaming are:

1: Achieve a temporary escape to help deal with stress and get away from a current situation

2: Create a sense of community and connection to meet like-minded people

3: Experience instant gratification and feedback to confirm progress in the game

4: A challenge to overcome and to have a sense of purpose, a goal to work towards

All these reasons apply to an autistic person, but there are additional reasons. These include being popular with fellow gamers who seek and admire their gaming abilities, knowledge, and guidance. Popularity with peers can seem elusive for autistic adolescents.

There is little, if any, social chit-chat and no requirements to process non-verbal communication or follow social conventions. There is also the possibility of becoming an avatar, creating an alternative non-autistic persona and reality.

Our clinical experience is that engaging in Internet gaming provides a high level of excitement and enjoyment for someone who may be depressed and have little to enjoy and look forward to. Internet gaming also acts as a thought blocker and a means of escape from anxious or depressed thinking, and a means of alleviating loneliness and a lack of social connection.  There is also an association between Internet gaming and ADHD, and the majority of autistic adolescents also have signs of ADHD. Thus there are many reasons why autistic individuals are of concern to their families and clinicians for the amount of time they engage in Internet gaming.

Consequences of Internet gaming

The consequences include mental and physical health, lost opportunities, and reduced achievements. Research with participants in the general population has indicated that excessive Internet gaming can increase depressive and anxiety symptoms and increase the risk of substance abuse. Physical symptoms include a weakened immune system due to lack of sleep and daylight, exercise loss and effects on physical fitness, obesity, increased risk for carpal tunnel syndrome, and eye and back strain. There can also be a reduction in academic performance, real-life social relationships and increased family disharmony and conflict.

Reducing the time engaged in Internet gaming

To reduce the amount of Internet gaming time, it is essential to understand why an individual player engages in Internet gaming. Each of the reasons described above needs to be explored and evaluated and to find other ways to meet those needs.

There are programmes designed for non-autistic gamers, such as the Internet and Technology Addicts Anonymous (ITAA), founded in 2017. It is a 12-step programme supporting compulsive Internet users. Media Addicts Anonymous (MAA) is another 12-step programme for media addiction.

Cognitive Behaviour Therapy with Internet Addicts (CBT-IA) has been designed and developed to help the gamer recognise the potential harms of Internet gaming, manage impulse control, identify triggers of Internet binge behaviour and use cognitive restructuring to challenge and modify cognitive distortions and rationalisations to justify excessive Internet use. The programme also helps develop self-identity, interpersonal communication skills and alternative emotion management strategies.

There are support communities for Internet gamers such as StopGaming-Reddit as well as www.gamequitters.com, and in Australia, www.GameAware.com.au developed by Andrew Kinch.

From our clinical experience, we would suggest adding components to conventional game-quitting programmes, such as expanding the person’s social network to include autistic friends and psychological treatment of anxiety and depression that accommodates the characteristics and experiences of autistic teenagers and young adults.  

Parents must consider removing gaming devices from the person’s bedroom, not gaming first thing in the morning and having a game-free day each week for all family members. We recommend a gradual reduction in the total amount of gaming each day, first establishing the accurate real-time spent engaged in gaming and reducing that time by perhaps 15 minutes each day for a week or more, then another 15-minute reduction to reach a goal of a total of two hours a day.

There will need to be careful consideration of activities to replace gaming, such as reading, watching movies and artistic activities, time with friends and new social activities such as Dungeons and Dragons, an autism support group, being with pets, adventure sports and geocaching, martial arts and online and college courses which may include game design.

 

References

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

Clarke and Adams( 2020) Research in ASD 72

Craig et al. (2021) Research in ASD 82, 101726

Hirota, McElroy, and So (2021) Journal of Autism and Developmental Disorders 51, 2764-2772.

Murray et al. (2022) Journal of Autism and Developmental Disorders 52, 2762-2769