Many professionals, in health, education and social services seem to be stuck in a time warp when it comes to the subject of ‘Autism Spectrum Disorder’. Because autism was originally thought to be a condition that mainly affected boys with a ratio of approximately 4 boys : 1 girl, the overall profile of High Functioning Autism / Asperger’s has become very gender biased towards boys only.
Increasing research and awareness, by experts within this field, are now claiming that a more accurate figure may well be a ratio of approximately 2 boys : 1 girl. Current research is suggesting that many girls are slipping through the net because they present differently to boys and so they are simply not being detected until they are teenagers or adults.
The current female profile for High Functioning Autism / Aspergers is very similar to that of PDA in that females tend to have much better imaginative skills, empathy and the ability to role play what they consider to be ‘normal’ thus often flying under the radar in many social situations. They do however still have the same or similar impairments but their different abilities to males on the spectrum means that these impairments manifest in different ways thus providing females on the spectrum with their own unique profile.
While PDA is similar to the female profile it appears to be a far more extreme version of it and the gender ratio for PDA is 50:50. The most notable difference between the female profile and the PDA profile is the extreme demand avoidance and control required by individuals with PDA in all aspects of their daily living and their extreme and impulsive reactions when they feel that this control is slipping.
However I do think that acceptance and awareness of the female profile and therefore the scope that impairments in social interaction and communication can manifest in more than one profile may be a useful stepping stone for PDA awareness. Especially given the fact that PDA appears to be one step along the continuum from what is currently being termed as the female profile.
Please click on the link below to read an article by Dr Judith Gould explaining about females on the spectrum in a little bit more detail.
Please click on the link below for the in depth list of female traits by Tania Marshall
Please click here to download the slides from the PDA conference where Dr Judith Gould discusses the female presentation and PDA.
With the above in mind i.e. that females do have the same impairments as males but present differently thus giving them their own unique profile I thought that I would adopt a similar approach and use the DSM 5 criteria to illustrate the unique profile of children with PDA.
This profile has been compiled by using my experience of having a 10-year-old daughter with PDA, general information shared by various parents in support groups, the diagnostic criteria for PDA by The Elizabeth Newson Centre and extensive reading on the subject of Asperger’s, the female Asperger Profile and PDA. I must stress that I do not have any formal qualifications in this area and that quantifying the PDA profile within the criteria of the DSM 5 is purely based on my own personal experiences, interpretations and opinions only. I am also aware that as my experience is mainly based around a female with PDA that the following description may be more biased towards females with PDA.
The new criteria under the DSM-5 are as follows:
Autism Spectrum Disorder
Currently, or by history, must meet criteria A, B, C, and D:
A. All individuals must have or have had persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.
- Children with PDA can appear to misunderstand tone of voice and the intention of the speaker often feeling that they are being told off, shouted at, purposefully embarrassed or ordered / bossed about.
- Do not appear to understand the natural social pecking order and do not see themselves as a child or understand their natural place in society or how to behave in relation to those around them.
- Children with PDA can be very over familiar with those around them e.g. quickly sitting on a person’s knee or wanting a cuddle from someone who they have only just met or with a person where this would be seen as inappropriate like a teacher. This can make a younger child seem very confident but it is in-fact a lack of awareness of appropriate interaction skills.
- Children with PDA need to dominate both their own conversation and the conversations of others with the use of many strategies. Constantly interrupting the flow of conversations, not allowing anyone else to speak, bombarding others with repetitive questions, refusing to respond to questions that are asked of them or responding by switching the conversation to a different topic. It can often appear that conversation is simply a tool that is used to either avoid the demands of others or to dominate and control the actions of others.
- Increasing awareness of their difficulties and the anxiety that socializing causes can result in many children with PDA failing to initiate any social interaction as they grow older.
- Children with PDA appear to have better empathy than other children on the spectrum but this can appear to be on an intellectual level rather than an emotional one. They can use their empathy skills to manipulate, control and avoid situations but often appear to have little understanding of the effect that their actions may have on others. They can appear to have no understanding of the frustration that being controlled may have on another child and they may show little or no remorse if a violent outburst has upset or injured another person. This may be due to an impairment in empathy or it could be that the need to control in order to reduce anxiety over rides any empathy. In the right environment and with increasing awareness and years this aspect of PDA may improve.
- Children with PDA may have difficulty in seeing things from another persons’ perspective which can lead to problems in resolving conflict.
- Children with PDA can often speak in quite complex sentences and the context of the language can seem bizarre for a child of that age. Language may often be copied or imitated from adults, other children or from the media but may not necessarily be understood by the child.
- Children with PDA may often tell lies, tales of fantasy and make up stories either about themselves or others but appear confused and or upset if these stories are either not believed or are not received well by others when they realise that they stories are untrue.
- Children with PDA can love playing practical jokes but don’t appear to naturally understand the boundaries of when a joke is going to far or if the recipient of the joke will find it funny or not. If the recipient is upset by the joke the child with PDA may still find it funny.
- Children with PDA don’t appear to fully understand or be able to empathize with how their words may hurt someone i.e. they may openly tell someone if they think that the person is fat or ugly or inappropriately laugh at something that others would not find funny.
- A child with PDA may take delight in embarrassing somebody else.
- Although a child with PDA will take delight in telling tall stories she may become very frustrated, angry and pedantic if she feels that another child or person is not literally speaking the truth.
2.Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures
- Body language and facial expression can often appear to be over the top, acted, mimicked or melodramatic, possibly due to the huge capacity for many children with PDA to role play and mimic what they see those around them doing especially on TV.
- Children with PDA can appear to have better eye contact than other children on the spectrum but is this due to their coping / acting skills.
- Children with PDA may invade and not understand the concept of an individuals personal space. Wanting to be constantly sitting on someones lap, standing too close, being in someone face and so on.
- Children with PDA may snatch items from people, physically push them into the position that they wish the other person to be in, move them around and organize other people like chess pieces in a chess game.
- Children with PDA may become very physically aggressive in order to have their needs met and can quickly lash out at others.
- A child with PDA may perceive an adult to be a piece of play equipment, using them to climb on, bounce on or ride on to an extreme level ignoring any protests from the adult.
3.Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
- Children with PDA can appear to be very social and can role play appropriate behaviors but the ability to sustain this role play can vary from child to child.
- Children with PDA often want to have friends and will seek out interacting with other children.
- Once the novelty of a new friend or situation wears off and the child becomes more comfortable and is less able to maintain the role play the obvious difficulties that children with PDA experience with peers become more obvious.
- Children with PDA need to control and direct the play and the interactions with peers.
- They may become obsessed with a particular child either from a love or hate perspective.
- They may try to isolate a particular child from the rest of the class / group in order to try to maintain that friendship by reducing the possibility of other children from taking her/him away from her.
- Children with PDA appear to cope much better in a one on one social situation and struggle to an even higher degree in group situations. This may further explain the need for the child to have one close friend who she can interact with on a one on one level.
- When the child with PDA does not feel in control she may often lash out both verbally and physically at the other child.
- Play can be imaginative but the child with PDA will often appear to be the script writer and the director and the other child is simply there to obey the demands of the child with PDA rather than to actively contribute.
- Children with PDA can have great difficulty in adjusting their behavior to different social contexts e.g. waiting quietly at the doctors, behaving appropriately in shops, adjusting their behavior for adults, following demands at school and so on.
- However children with PDA do have a good ability to role play the ‘typical child’ but the ability to maintain this front of normality varies from child to child. Some children can fly under the radar at school but then blow up all of that pent-up anxiety / frustration at parents.
- Other children can maintain this front for short spells only e.g. when visiting a family member, starting a new friendship or for the first few weeks / months in a new class or school. However once the ‘Honeymoon’ period is over the child struggles to maintain the facade and the true difficulties soon emerge.
- Ultimately children with PDA, due to their need to be in control, can find it increasingly difficult to maintain a healthy relationship with peers and following repeated failures and low self-esteem they may become very reclusive.
- Other children may actively avoid the child with PDA, frightened or confused by the controlling and unpredictable behavior.
- The child with PDA may become the object of ridicule and bullying by other children who confuse her difficulties with those of simply being a bossy, naughty child. They may learn which buttons to push in order to prompt an outburst from the child.
- Children with PDA may become so needy for a friend that they themselves may be at risk of being manipulated by other children who recognize this weakness and utilize it for their own purposes.
B. All individuals must have or have had restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases)
- Children with PDA may mimic and role play the speech and actions of others which could be described as social echolalia.
- They may make up their own little language or pronounce certain words in their own unique way e.g. defore instead of before or smarsh mellows instead of marsh mellows.
- They may develop either small or large complex motor tics e.g. repetitive sniffing, grunting, squeaking, twirling, facial twitching and so on.
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
- Children with PDA may become greatly distressed if their belongings are moved or tidied away. Things may need to be left in the position that they left them.
- Many children with PDA do have a very limited repertoire for food, many insisting on eating the same things again and again.
- Many children with PDA do have a tendency for repetitive questioning especially when they are trying to control a situation.
- The need to control and avoid demands could be seen as a repetitive routine and they do impose this repetitive behavior on others.
- Children with PDA do not like routine that is imposed on them by others but do develop a need to adhere to their own routine and will impose this routine on others. Using novelty can sometimes be successful in helping them to engage in an activity that may not be part of their usual routine.
- Children with PDA may develop a routine with people, where only certain people can perform certain tasks e.g. Mum wakes child up and does morning routine, dad does bedtime routine, mum plays arts and crafts, dad plays computer games, outreach worker plays Barbie and so on and no one can ever switch roles.
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
- As with the female profile children with PDA do have obsessions and special interests however these tend to be different from what you would typically see with males on the spectrum. With children with PDA it may often not be the topic of the obsession that appears unusual but rather the intensity that the interest evokes.
- Obsessions can be social in nature with either another child, person, TV Personality or show.
- They may repeatedly watch the same film or series time after time and/or need to watch a whole series back to back all the way through.
- May become obsessed with a particular toy or style of play e.g Barbie and that may become the only game that she plays.
- Children with PDA often seem to become fixated with a particular soft toy who may then take on a whole persona of its own.
- They may become obsessed with particular computer or Xbox games needing to play them for hours on end.
- A child with PDA may repetitively colour in picture after picture of their latest focus of interest.
- The child may become heavily involved in role play and the lines of imagination and reality can sometimes become blurred.
- Some children with PDA may become obsessed with purchasing items and a desired item can become all-consuming and the need to have it does not dissipate until the item has been purchased.
- Some children with PDA may have some slightly more unusual interests like tying things up with intricate knots, cutting up yogurt pots, making glass after glass of colored water etc, etc.
- They may love to collect things and become obsessed with obtaining everything and anything to do with their latest obsession e.g. the full infantry of Moshi Monster merchandise, everything to do with Barbie, Power Rangers . Sometimes this love of collecting may extend to more unusual items e.g. marbles, rocks and various trinkets.
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
- Children with PDA may be over or under sensitive in some if not all senses. The different senses consist of hearing, smell, taste, vision, touch, vestibular and proprioception.
- Difficulties with any of these senses can manifest in various behaviours.
- Certain noises can be too loud or the child may become distressed if everything is at the same volume and they can’t differentiate between background noise and primary noise.
- Certain smells may be overpowering and nauseous.
- Tastes and textures in the mouth may cause the child to be a very picky eater.
- Clothes and shoes may irritate which may cause the child to be most comfortable when wearing nothing at all or nightware. They may be resistant to clothing and find labels in clothes a real irritant.
- Spinning and jumping on a trampoline may be the child’s reaction to an impairment in the vestibular function in the inner ear affecting balance.
- Bumping into things and knocking things over may be due to proprioception processing difficulty which regulates the brain’s ability to know where your body is in relation to space.
- Fluorescent lights, problems with reading and writing, becoming over stimulated with visual stimuli may all be signs of a visual processing difficulty.
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
- The most noticeable trait in early childhood is the level of demand avoidance, control and challenging / explosive behaviour. These early traits are so overpowering and all-encompassing that they can totally mask the autism that drives them. This can lead to the incorrect diagnosis of naughty child, inefficient parenting, Oppositional Defiant Disorder and Attachment Disorder to name but a few. Autism can be completely overlooked because it is often only when the child is calm and receiving the strategies and management for PDA that many of the traits of autism that lie beneath the PDA Behaviour Profile become visible. When they do become more visible the manner in which they present may not be typical of the current understanding of autism / asperger’s but may instead be more consistent with the emerging Female Profile. Or even better, if we can get PDA recognized, the traits will be consistent with what clinicians may come to learn as the PDA profile.
D. Symptoms together limit and impair everyday functioning.
- When the symptoms are put together they do fit the criteria for Autism and they do impair everyday functioning however for the correct strategies, understanding and management the correct diagnosis of ASD with a PDA profile is required to enable the individual to have the best support for the future.
Please view this brilliant leaflet compiled by a fellow PDA parent.
Perhaps the reason why children with PDA are so complex and extreme is due to the fact that they seem to be affected to such a large degree by so many of the features and criteria for autism. Perhaps they process these difficulties to such an acute level that the response from them is one of needing complete control to make the anxiety and confusion, been felt at a heightened level, to STOP !!!
Many children with autism cope by bringing order to their lives by arranging possessions in a certain order and by having a need for repetitive routines and structure. Does the child with PDA find that the only way that they can cope and bring certainty and routine into their lives is to completely arrange and control their whole environment and the people in it. Without the control the ability to understand, reason and to intuitively know what to do socially when you are so desperate to be a social butterfly is just too confusing, scary and sends off the stress beacons.
Is it any wonder that many children with PDA become so reclusive and find it impossible to leave the comfort of home. Past experiences, a growing understanding of their differences, an awareness that for now they are powerless to control their behaviours and the recognition that trying to obtain complete control of their surroundings is no longer enough and can’t protect them from the curved ball that may get thrown their way.
Mollie put it very eloquently last night when she said ” I have a phobia of people” and “I don’t really know who I am, what I like or who I am supposed to be”.
How can anybody say that these children do not have autism!!! it is time to come out of the time warp and for clinicians to research and accept that autism has more than one face. It really isn’t rocket science is it? Read the information, the profile, meet the child, understand the child’s behaviours, then put the pieces together. This child has a form of autism whose profile is best described as fitting that of PDA !!!
Autism is at the heart of PDA and the diagnostic profile of PDA is how these impairments then manifest into the behaviours of individuals with PDA. It is important to understand that these behaviours are the result of how these individuals cope and respond to the challenges that their form of autism presents them with.
The diagnostic criteria for PDA can be viewed by clicking on the link below.