Question 7 What is PDA?

BUT NOT NECESSARILY FOR THOSE WITH A PDA PROFILE!

8 Information about Pathological Demand Avoidance

I am a third party approved provider of PDA training by the PDA society. Please get in touch if you’d like me to deliver a session for your school

PDA is now more recognised as a distinct profile of autism. Individuals with a PDA/EDA (alternative terminology: Extreme Demand Avoidance) profile will share similar difficulties to others on the autism spectrum (triad and sensory). In addition, the central difficulty for people with PDA is their “anxiety-driven need to be in control and avoid other people’s demands and expectations.” Understanding PDA in Children. Christie, Duncan, Fidler & Healy (2011). It is the Autism which underpins the extreme demand avoidance and need for control. Because PDA is not currently included in either of the diagnostic manuals (DSMV and the ICD11), the validity of this profile of ASD remains a contentious subject among some professionals.

Features of PDA …

Resisting and avoiding the ordinary demands of life – getting up, joining family meal, even when it’s what the person wants to do.
Use social strategies as part of the avoidance.
Compliance on ‘their terms’.
Appearing sociable on the surface.
Excessive mood swings and impulsivity.
Lack of constraint by social norms or sense of hierarchy.
Comfortable in role play – reality and pretence merge and blur.
Threats or extreme behaviour.
Lack of sense of responsibility or sensitivity to others’ distress.
Failure to constrain behaviour in public.
Obsessive behaviour – often social in nature.

What this might look like …

Can be controlling and dominating, especially when anxious and are not in control of their environment.
Can also be very affectionate, charming, sociable and chatty, when they are calm and feel safe. This conflicting and variable presentation is confusing for parents and professionals alike.
Sometimes a child with PDA can appear very anxious at home but remain relatively passive at school (masking).
Demands at school can lead to severe ‘meltdown’.
Some children can experience such high anxiety in school that they become school refusers.
Just as with ASD -> experience over or under-sensitivity in any, or all, of their senses: sight, smell, taste, touch, hearing, vestibular, proprioception or interoception.
Seen in people of both genders and in equal proportions. No prevalence rates for PDA yet. As more diagnoses of PDA are made, prevalence figures will become more apparent.

♥A half hour podcast for parents but very useful for professionals too.

♥The most reliable and evidence based information is to be found on the PDA website.

Love this booklet on PDA from NHS East Sussex Healthcare

♥Information from the National Autistic Society on demand avoidance.

♥A short article from Ruth Fidler on meeting educational needs of those with a demand avoidant profile.

♥10 minute video by a mum of a girl with PDA. Pathological Demand Avoidance (PDA): Characteristics and Strategies.

Information and Advice from two inspirational practitioners. In this PDA Society webinar Phil Christie and Ruth Fidler from Autism Associates provide an overview of the education and support needs of children with the PDA profile. They outline how some of the strategies that are typically found to be effective for autistic children and young people (such as the use of routine, predictability and structure) need considerable adaptation, as PDA individuals respond better to less direct and more collaborative approaches.

♥From the PDA Society, an 8 minute video which gives real life insight into PDA.

Some starting points for school staff:

Quality of relationship is key. The opposite of anxiety isn’t calm … it’s trust.
Identify a quiet space (with child/young person if appropriate).
Show respect – kids should know you like them unconditionally.
Build in flexibility and choices to timetables – sense of autonomy. Balance – 2 options – offer to whole class?
Think ahead/plan for change. Give child advanced warning.
Work with special interests. Their special interest is your most valuable tool.
Keep calm! PDA kids are adept at reading reactions -> your reaction may motivate!
Be willing to apologise. No relationship – no progress.
As few ground rules as possible – pass over responsibility ‘I’m sorry it’s health and safety’ or ‘It’s on the timetable I’m afraid’.
Use complex language? Can sound more like negotiating and may intrigue.
Humour can help.
Monitor stress levels – scale back demands if necessary.
Declarative language. ‘I wonder if we can …?’ ‘Maybe we could investigate …?’ etc.
Use distraction.
Ask for advice!

An adult writing about her PDA.

THIS SECTION HAS YET TO FIND A HOME!

In this section:

1 What do we mean by unstructured times, why are these times so difficult for autistic children/young people and strategies to support?

2 Supporting children/young people when things go awry

3 Supporting Transitions

A ♥ indicates images that follow are hyperlinked

1 What do we mean by unstructured times, why are these times so difficult for autistic children/young people and strategies to support?

Break time, playtime, lunchtime, ‘wet’ playtime, social events can be difficult and stressful for children/young people with autism. They often require support during these times – often more than in the classroom.

♥Advice from the National Autistic Society.

♥Very sensible advice from Reachout ASC.

♥Playtime/break times create excellent opportunities for staff to teach interaction skills. Wee bit out-of-date but still some good, sound advice.

Some general advice for adults supporting children at break times.

Plan, teach and model social skills.
Encourage positive relationships you notice developing.
Identify for the child/young person who they can go to if they need help.
Teach the difference between joking and teasing. Some visuals to support those unwritten social ‘rules’ …
Allow child/young person ‘time out’ to be on their own – recharge batteries.
When playtime/break is over – cool down or relaxation activity if stressful time.
Break playtime/break/lunchtime up – schedule/checklist of ‘things to do’. (see below)
Cards with ideas of things to do in the playground/at break. (see below)
Allow access to ‘special interest’ clubs.
Let them be a helper in the playground.
Give them a job to do.
Let them be a buddy to a younger child/young person – careful explanation.
Access to quiet zone in playground – possibly with structured activities.

Sometimes children need a ‘timetable’ for the playground to give them some structure and predictability. Here are a couple of examples I’ve used in the past.

The child chose a different strip for each day of the week and was supported by an adult to move from one activity to the other. Eventually, they dispensed with the visuals as they had build up a framework of activities they could do at break time.

Sometimes, teaching them some ‘openers’ can be helpful. It might be necessary to practise these with a trusted adult before asking peers.

2 Supporting children/young people when things go awry

♥Visuals to support communication when they have had a tricky time. It’s a great way of solving playground/break time issues visually, making the discussion permanent. You are then able to return to the ‘conversation’ at a later date if necessary.

and this one …

3 Supporting Transitions

Transition is another word for change and change is something different. Yet another potentially/perceived unstructured time for learners. Transition and change are potential stressors – at home, school and in the community. Autistic children and young people can find any kind of transition very difficult. Some examples of transition are:

Daily transitions – home to school, one activity to another, a different teacher, pizza instead of chips, different areas of the house/school, change in people at home/community
Changes at home – new baby, moving house, bereavement, holiday, making/changing friends, divorce or separation, Parent/carer new job may involve working away from home or new shift patterns
Stepfamilies and all the changes that come with transitioning to a new family.
Class to class – e.g. P3 -> P4
Education: home -> nursery, nursery -> primary, primary -> secondary, secondary -> workplace/college/university
Personal transitions – ‘growing up’ which can be a tricky transition even for typically thinking youngsters.

Most of us intuitively understand how to deal with these life changes, however, transition/change often causes significant anxiety (the overarching emotion of autism) for those on the spectrum and they often need a great deal of support to make a transition. It’s not always major transitions/change which can cause most anxiety. We must remember that what we perceive to be a small transition (and therefore shouldn’t cause stress and anxiety) may not be perceived that way by the autistic child/young person and may cause huge stress and anxiety.

You can support transitions by remembering The 3 P’s …

Plan (visuals are often useful)
Prepare (visuals are often useful)
Practise (when they are calm)

NO surprises!

Visuals which can be useful in supporting transitions:

Calendar/diary
‘to do’ list – photos, symbols, text
First (now), then (next) boards
Timetables
Photographs (people and places)
Social stories/comic strip conversations
Transitions booklets, One Page Profile, Communication Passport
Timers – watch, sand, clock, tech

♥Info. and resources to support personal transitions.

♥I use and recommend visuals from Worcestershire Speech and Language Therapy website. I absolutely love these ones to support transition (only a couple of examples here). Find them in ‘Transition Resources ‘.

Resources for supporting school transitions

♥The National Autism Implementation Team (NAIT) have produced some very useful advice for supporting learners to transition back to school. I suggest they are ‘everyday’ strategies and we should continue to follow the post Covid advice.

♥From the Autism Toolbox. A checklist to support nursery/primary transition.

♥From North Lanarkshire Council, a nursery -> primary transition booklet.

♥Class to class to class transition.

An example from a transition booklet to support class to class transition.

♥From NLC Communication Friendly, downloadable booklets to support class -> class transitions.

♥And another from NLC Communication Friendly

♥Transition booklet from Lynn McCann ReachoutASC

Advice from The Autism Toolbox:

Primary to Secondary School

The transition from Primary to Secondary School is a major change in a young person’s life but can be even more challenging for autistic learners. It involves a large number of changes which may include:

Dealing with a much larger number of pupils
Dealing with an increase in the number of classes and subjects
Different travel arrangement to get to and from school
Being the youngest at the new school
More teachers and their different approaches
A new and often much larger building
New timetables
New and different routines
Coping with subjects they have not encountered before
A longer working day, taking into account travel time.

Supporting transitions for autistic children into Secondary School

Families and autistic learners should play a key role in this transition. They should be part of the planning process and transition meetings and may participate in an enhanced transition programme with the secondary school
Enhanced transition might involve extra visits to the secondary school. It can help some learners to have a task/project to do during the visit e.g. checking the temperature in key places
In line with legislation, transitions should be planned well in advance: this may mean the first formal planning meeting with the secondary school could take place in Primary 6
It is crucial that all agencies work together to ensure a smooth transition for the autistic learner
It is important that staff in secondary schools are made aware of autistic learners and access their learner profiles
The lead professional in the transition process should draw up a transition plan detailing learner strengths and areas where additional support may be required. This should also include any sensory issues experienced by the learner
Ensure that the transition plan is appropriately broken down into small, manageable steps if needed
Write a social story about transitioning from school to school. Highlight the big changes that may cause anxiety such as waking up earlier, taking the bus, or eating lunch at school rather than at home.

♥From The Autism Toolbox, a primary to secondary transitions checklist.

♥It’s so easy to edit this primary to secondary transition workbook. I’ve used it again and again over the years.

♥A free primary to secondary booklet from TES. Some of it may not be specific enough for autistic young people but still has some useful stuff. I’d certainly colour code the sample timetable.

♥ Another ‘Transition to High School’ editable booklet from NLC Communication Friendly.

♥A year to year checklist from The Autism Toolbox.

♥This is a very helpful resource from Salvesen Mindroom to support learners who are approaching the end of their school life. It helps them think about what they would like to do after they leave school so they can tell other people.

♥Information from the National Autistic Society on supporting the transition out of school.

♥Scottish Autism provides advice on transitioning to university.

and from NAS

♥The aim of the Scottish Transitions Forum is ‘to improve the experiences of young people (14-25) who require additional support who are making the transition to young adult life’.

Question 7 What is PDA?

BUT NOT NECESSARILY FOR THOSE WITH A PDA PROFILE!

8 Information about Pathological Demand Avoidance

I am a third party approved provider of PDA training by the PDA society. Please get in touch if you’d like me to deliver a session for your school

Features of PDA …

Resisting and avoiding the ordinary demands of life – getting up, joining family meal, even when it’s what the person wants to do.

Use social strategies as part of the avoidance.

Compliance on ‘their terms’.

Appearing sociable on the surface.

Excessive mood swings and impulsivity.

Lack of constraint by social norms or sense of hierarchy.

Comfortable in role play – reality and pretence merge and blur.

Threats or extreme behaviour.

Lack of sense of responsibility or sensitivity to others’ distress.

Failure to constrain behaviour in public.

Obsessive behaviour – often social in nature.

What this might look like …

Can be controlling and dominating, especially when anxious and are not in control of their environment.

Can also be very affectionate, charming, sociable and chatty, when they are calm and feel safe. This conflicting and variable presentation is confusing for parents and professionals alike.

Sometimes a child with PDA can appear very anxious at home but remain relatively passive at school (masking).

Demands at school can lead to severe ‘meltdown’.

Some children can experience such high anxiety in school that they become school refusers.

Just as with ASD -> experience over or under-sensitivity in any, or all, of their senses: sight, smell, taste, touch, hearing, vestibular, proprioception or interoception.

Seen in people of both genders and in equal proportions. No prevalence rates for PDA yet. As more diagnoses of PDA are made, prevalence figures will become more apparent.

♥A half hour podcast for parents but very useful for professionals too.

♥The most reliable and evidence based information is to be found on the PDA website.

Love this booklet on PDA from NHS East Sussex Healthcare

♥Information from the National Autistic Society on demand avoidance.

♥A short article from Ruth Fidler on meeting educational needs of those with a demand avoidant profile.

♥10 minute video by a mum of a girl with PDA. Pathological Demand Avoidance (PDA): Characteristics and Strategies.

♥From the PDA Society, an 8 minute video which gives real life insight into PDA.

Some starting points for school staff:

Quality of relationship is key. The opposite of anxiety isn’t calm … it’s trust.

Identify a quiet space (with child/young person if appropriate).

Show respect – kids should know you like them unconditionally.

Build in flexibility and choices to timetables – sense of autonomy. Balance – 2 options – offer to whole class?

Think ahead/plan for change. Give child advanced warning.

Work with special interests. Their special interest is your most valuable tool.

Keep calm! PDA kids are adept at reading reactions -> your reaction may motivate!

Be willing to apologise. No relationship – no progress.

As few ground rules as possible – pass over responsibility ‘I’m sorry it’s health and safety’ or ‘It’s on the timetable I’m afraid’.

Use complex language? Can sound more like negotiating and may intrigue.

Humour can help.

Monitor stress levels – scale back demands if necessary.

Declarative language. ‘I wonder if we can …?’ ‘Maybe we could investigate …?’ etc.

Use distraction.

Ask for advice!

An adult writing about her PDA.

THIS SECTION HAS YET TO FIND A HOME!

In this section:

1 What do we mean by unstructured times, why are these times so difficult for autistic children/young people and strategies to support?

2 Supporting children/young people when things go awry

3 Supporting Transitions

A ♥ indicates images that follow are hyperlinked

1 What do we mean by unstructured times, why are these times so difficult for autistic children/young people and strategies to support?

Break time, playtime, lunchtime, ‘wet’ playtime, social events can be difficult and stressful for children/young people with autism. They often require support during these times – often more than in the classroom.

♥Advice from the National Autistic Society.

♥Very sensible advice from Reachout ASC.

♥Playtime/break times create excellent opportunities for staff to teach interaction skills. Wee bit out-of-date but still some good, sound advice.

Some general advice for adults supporting children at break times.

Plan, teach and model social skills.

Encourage positive relationships you notice developing.

Identify for the child/young person who they can go to if they need help.

Teach the difference between joking and teasing. Some visuals to support those unwritten social ‘rules’ …

Allow child/young person ‘time out’ to be on their own – recharge batteries.

When playtime/break is over – cool down or relaxation activity if stressful time.

Break playtime/break/lunchtime up – schedule/checklist of ‘things to do’. (see below)

Cards with ideas of things to do in the playground/at break. (see below)

Allow access to ‘special interest’ clubs.

Let them be a helper in the playground.

Give them a job to do.

Let them be a buddy to a younger child/young person – careful explanation.

Access to quiet zone in playground – possibly with structured activities.

Sometimes children need a ‘timetable’ for the playground to give them some structure and predictability. Here are a couple of examples I’ve used in the past.

The child chose a different strip for each day of the week and was supported by an adult to move from one activity to the other. Eventually, they dispensed with the visuals as they had build up a framework of activities they could do at break time.

Sometimes, teaching them some ‘openers’ can be helpful. It might be necessary to practise these with a trusted adult before asking peers.

2 Supporting children/young people when things go awry

♥Visuals to support communication when they have had a tricky time. It’s a great way of solving playground/break time issues visually, making the discussion permanent. You are then able to return to the ‘conversation’ at a later date if necessary.

and this one …

3 Supporting Transitions