Missed Diagnosis or Misdiagnosis? Women and Girls with PDA

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1 Missed Diagnosis or Misdiagnosis? Women and Girls with PDA Dr Judith Gould Director The NAS Lorna Wing Centre for Autism Dr Jacqui Ashton Smith Principal The NAS Helen Allison School

2 Why the Interest NAS Lorna Wing Centre increasing number of girls and women referred for diagnosis Historically there has been a strong gender bias of more males than females As a result professionals are less likely to diagnose girls / women even when symptoms and behaviours are evident

3 History and Development of Thinking Links with PDA Professor Newson in the 1980 s described PDA as a pervasive developmental disorder distinct from autism The development of the concept of the autism spectrum included children and adults with the PDA pattern of behaviour Our thinking is that PDA is part of the wider social impairment spectrum

4 Autism is a Spectrum Condition All people in the spectrum have core difficulties. These are: Difficulties in Social Interaction Difficulties in Social Communication Difficulties in Social Imagination Problems in these areas are usually associated with a repetitive, rigid style of functioning. For each of the three areas and the repetitive style of functioning there are different manifestations of the problem.

5 Social Interaction The person makes social approaches actively but these are inappropriate, one sided and naïve. The behaviour is not modified according to the needs, interests and responses of the person approached

6 Social Communication The person communicates regarding own interests with little or no interest in other people s concerns or ideas. This communication may appear two-sided and reciprocal initially but topics usually revert back to the person s own ideas and interests.

7 Social Imagination The person s pretend or role play and / or imaginary world appears to be shared with others but the person dominates and insists the other person follows the rules and themes. If others refuse to be engaged the person carries on with their own ideas or play. Play is mainly repetitive. The person may appear to have a rich imaginative world but the quality is unusual, often with fantasy and reality blurred.

8 Overall Pattern of Activities The individual s self chosen activities can be varied but repetitive activities are a prominent part of the person s repertoire when not led by others. The PDA group have been described as hating routine and thriving on novelty BUT are they imposing their routines by controlling the environment?

9 Lack or impairment of the social instinct is the single feature that is the basis of all autism spectrum conditions. The PDA pattern of behaviour may be one type of the impairment of the social instinct. Surface sociability can result in mis or missed diagnosis.

10 Diagnosis of the Autism Spectrum At the Lorna Wing Centre, the Diagnostic Interview for Social and Communication Disorders (DISCO) is used as part of the diagnostic process. The DISCO has over 500 questions relating to development and untypical behaviours. Seventeen questions relate to the behaviour described by Professor Newson and her team.

11 DISCO Unusually quiet and passive in infancy Clumsy in gross movements Communicates through doll, puppet, toy animal etc Lacks awareness of age group, social hierarchy etc Rapid inexplicable changes from loving to aggression Uses peers as mechanical aids, bossy and domineering Repetitive role play lives the part, not usual pretence Hands seem limp and weak for unwelcome tasks Repetitive questioning Obsessed with a person, real or fiction Blames others for own misdeeds Harasses another person may like or dislike them Lack of cooperation, strongly resists Difficulties with others, tease, bully, refuse to take turns, makes trouble Socially manipulative behaviour to avoid demands Socially shocking behaviour with deliberate intent Lies, cheats, steals, fantasises, causing distress to others

12 Linked thinking Clinical cases Consultancy requested from NAS schools Preparation of paper on Girls and Women on the autism spectrum Anecdotal sharing of ideas Girls are they a sub-group?

13 How does our research into Girls and women on the autism spectrum link with PDA? Many girls on the autism spectrum are not being identified and diagnosed Gillberg 2010 without the skills of an experienced clinician the diagnostic criteria used may not pick up girls Kanner type 4 boys to 1 girl, should be 1.5 boys to 1 girl Asperger type 12 boys to 1 girl, should be 4 boys to 1 girl PDA Equal number of boys and girls diagnosed

14 ASD in girls Are there symptomatic differences (girls vs boys)? According to the ASSQ-REV, 45-item extended version of the ASSQ there are some (Gillberg and Kopp 2010) Different voice or speech (50% girls, 20% boys) Motor tics (40% girls vs 15% of boys) Deviant style of gaze (50% girls vs 30% of boys) Lacks best friend (30% girls vs 70% of boys) Difficulty completing activities (30% girls vs 5% of boys) Follows other children like a shadow (40% girls vs 10% of boys) Demand avoidance (65% girls vs 20% of boys)

15 Why are young girls with an autism spectrum condition not being identified? Passive personalities, compliant do not come across as having social impairments. Shy, coy embarrassed, naïve, innocent and unassuming this is why they avoid eye contact. Not disruptive and try not to draw attention to themselves as boys do. They camouflage their difficulties. Boys externalise their problems whereas girls suffer in silence & become passive-aggressive. Appease and apologise. (Attwood, 2007)

16 A number of traits shared by girls on the autism spectrum and PDA 10 of the 17 DISCO questions relating to PDA Unusually quiet and passive in infancy Communicates through doll, puppet, toy animal etc Lacks awareness of age group, social hierarchy etc Uses peers as mechanical aids, bossy and domineering Repetitive role play lives the part, not usual pretence Obsessed with a person, real or fiction Harasses another person may like or dislike them Lack of cooperation, strongly resists Socially manipulative behaviour to avoid demands Lies, cheats, steals, fantasises, causing distress to others Is the key issue in PDA the intensity of these shared behaviours?

17 Why are girls with an autism spectrum condition not being identified at school? Boys disruptive behaviour is more common Boy s behaviour has a different purpose to gain an object whereas girls want to gain attention from another. (Reese et al, 2005) Girls - more able in social play and have a more even profile of social skills. Girls had better visual reception (non verbal) skills than boys. (Carter et al, 2007) Girls - more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger's Syndrome. (Attwood, 2007)

18 Are girls different? Girls - more passive and collect information on people rather than things. Girls escape into fiction, have imaginary friends, live in another world with fairies and witches, obsessively watch soap operas, intense interest with celebrities. Imitate other girls in order to initiate social contact but can t hold reciprocal friendships which is distressing.

19 Are girls different? Demonstrate a form of social echolalia. Mirroring others and acquires a superficial social competence by acting the part of another person. Girls are more likely to be enrolled in Speech and Drama lessons this provides an ideal and socially acceptable opportunity for coaching in body language.

20 Are girls different? Play and Imagination When indulging in solitary doll play, has a script and is in full control, often reproducing a real event or a scene from a book. Attwood (1999) Lack reciprocity in their natural social play and can be too controlling. The dominance and intensity of play is out of the norm for a young girl. (Attwood, 1999)

21 Are girls different? Social understanding and identity AS girls have amazing memories, this can include reciting the dialogue for a number of characters in a play or memorising scripts of real life conversations acting could be a good career option for these women. (Attwood, 2007) I was an avid observer. I was enthralled at the nuances of people s actions. In fact, I often found it desirable to become the other person..at times I literally copied someone s looks and their actions. I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits and tiny gestures. It was as if I became the person I was emulating. (Liane Holliday-Willey: Pretending to be normal.)

22 Are girls differerent? - Behaviour Demand avoidant and passive aggressive Socially manipulative and controlling More impulsive and emotionally unstable Obsessive behaviour often about people Often loses the boundaries between reality and fiction Would like a friend just one! Likes to mimic and learn from watching other people Lack of sense of identity Vulnerable

23 Girls without a diagnosis of an autism spectrum condition in the education system including PDA Large numbers of undiagnosed girls going through the education system. The problems they encounter are:» Lack of identification» Lack of appropriate support» Lack of appropriately trained teachers/ staff If the diagnosis had come earlier in her life, as a girl Postgate believes she would have been a lot more successful. At school I was bright, but eccentric. If I had been a boy, that would have been tolerated more. I d have gone into science (Orr, 2008)

24 Looking to the future Children with PDA and girls on the autism spectrum need to be identified and appropriate interventions put in place The way in which many girls on the autism spectrum present is different from boys. Girls on the autism spectrum require educational interventions that meet their specific needs Children with PDA also require educational interventions that meet their specific needs In many ways the educational interventions geared towards girls are more appropriate to those traditionally geared towards boys Girls with PDA like girls with autism and AS face distinct challenges

25 Autism and societal expectations of girls and women Women are affected by autism in the same way as their male counterparts; however, they are doubly challenged by the added assumptions that society places on their female gender. Problems related to the autism spectrum are combined with society s expectations of women. How one looks, what one wears, how one is supposed to relate socially, that a woman is supposed to have natural empathy for others, expectations about dating and marriage Woman with autism in Faherty s social group (2002).

26 Emotional wellbeing and fostering mental health The emotional instability and moodiness of adolescent girls in general can be amplified for girls with ASD. (Ernsperger & Wendel, 2007) It has been found that as children approached adolescence, increased signs of depression are also observed and that females may be particularly vulnerable due to- Hormonal changes (Brereton et al, 2006) Greater expectations to succeed academically and socially (Cohen-Sandler 2005) Attwood states that girls on the autism spectrum can be at a risk of reactive depression due to: Coming to the realisation that they are different from their peers. A general lack of acceptance by their peers and/or bullying. A greater awareness of the daily social difficulties they experience. This can result in depression, negative self perception, de-motivation, feelings of worthlessness, hopelessness and self harm.

27 Girls on the autism spectrum and issues with eating Many young children on the autism spectrum have issues with food texture, colour, pica, food fads etc 18 23% of adolescent girls with anorexia also present with signs of Asperger Syndrome. (Gillberg & Billstedt, 2000)

28 In conclusion - The future for girls with ASD is unlimited and boundless. As parents and professionals, we cannot let our own fears and lack of knowledge inhibit our girl s growth and independence. (Wagner, S. 2007)

29 Clinical anecdotal evidence indicates that these behaviours occur in individuals with an ASD. Diagnostically the PDA sub-group is recognisable and has implications for management and support.