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Pathological Demand

Avoidance Syndrome

Presented by Lynn McCann

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© Lynn McCann (2020) is the author of this course.

Please do not reuse any of this content in another format without permission from the author.

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What is PDA?

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Stress

Anxiety

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• Elizabeth Newson – 1980s first identified

• Looks like ASD on paper but more social understanding and engagement.

• Behaviours driven by excessive need to avoid demands.

• Controlling and manipulative of interpersonal relationships.

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Key features: Resists and avoids ordinary demands of life.

• May seem very clever in avoidance• Socially manipulative• Distracting adults• Excusing self from instructions• Procrastinating and negotiating• Physically incapacitating self• Withdrawing into fantasy or role play• Physical outbursts or attacks

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The resistance can start subtly…And if the distraction doesn’t work then…Procrastination then…Excuses then….Defiance then…Tantrum…Meltdown…

Some children go from demand to meltdown in an instant.

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Key features: Surface sociability.

• But lacking sense of social identity• Seemingly unaware of pride or

shame• Can seek social feedback but

doesn’t know the boundaries• No understanding of responsibility• Uninhibited• Seem to act like an adult

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Key features: Impulsive reactions, moods.• Mood swings from calm to panic

for no obvious reason.• May be in response to PERCEIVED

pressure / demand – from self, environment or others.

• Will only engage on their terms.• Even favourite activities avoided if

suspect someone else exerting control.

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Key features: Comfortable in fantasy / role play. • Can live in alternative reality –

fantasy world.• Can take on persona of others,

copying every gesture, detail.• Enjoys role play, can be controlling

of others or take on role of being in control.

• Coping mechanism to avoid anxiety.

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Key features: Verbal development.

• Delayed due to passivity when younger.

• Verbal skills usually caught up and good vocabulary.

• Good verbal skills can mask comprehension difficulties (inference, reading non-verbal communication, literal).

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Key features: Obsessions.

• Much or most of the behaviours are intense and obsessive.

• Intense social obsessions rather than objects – focus on celebrities, peers, adults and copying them.

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My experience of PDA by Isaac Russell

video

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We haven’t yet established the interaction and overlap with core ASD

characteristics.

Often children are diagnosed with ASD first.

PDA diagnosis rare! Some clinicians will diagnose it but many don’t recognise

it.

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We cannot diagnose PDA and cannot assume that it is PDA

We have to look meticulously at the stresses on the child from within their

own thinking and from outside

Autism and Anxiety can manifest in many ways and be very complex

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Sensory Processing

We experience the world through…1.Vision2.Smell3.Hearing4.Touch5.Taste6.Vestibular (balance)7.Proprioception (body awareness) 8.Interoception (state of internal organs)

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Range of capable functioningAlert

Calm

Non or under responsiveHypo-sensitive

Sensory seeking

Over responsiveHyper-sensitive Sensory avoiding

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• Alexithymia – The difficulty in recognising and connecting emotions to events and inner sensations.

• Hyper-emotionality – feeling everything and everyone’s emotions, -often physically.

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Sensory and emotions.

•Have a sensory assessment done. Ref: The Out-of-Sync Child by Carol Stock Kranowicz

•You should change the environmental factors that are contributing.

•Introduce a sensory diet, including exercise.

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How to support children with a PDA Profile

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STRESS environment / events

demands communication social demands

Time / memory 'Spoons’ / puberty

school / family

CO_MORBID OCD ODD

GAD Depression

Anxiety PDA

INTERNAL -Thinking

imagination catastrophising

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1.Choose Priorities

• Could be a short list! (1,2,3 Priority)

• Matched to what can be successful achieved

• Essentials – no hurting self/others/property

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Task:

Write a list of the demands of a typical day.

Prioritise them in order of importance

1 – non-negotiables 2 – small levels of engagement 3 – good day with more engagement

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2. Adjusting demands to the level of tolerance

• Daily (hourly?)• Calm – more demands tolerated• Anxious – less demands tolerated• The more control the child has, the

more they may be able to tolerate• Some days even control is too much• Some days self directed activity

means a lot achieved

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3. Manage Meltdowns

• Avoid where possible by understanding tolerance levels.

• Low Arousal* responses – check YOUR response, don’t back the child into a corner / cage them in (verbal demands do this too).

• De-escalating techniques – distraction, interests, exercise, sensory etc.

• Safety + Silence (or soothing talk) + Recovery

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4. The Adults (don’t take it personally)

• Key worker – Needs a trusting/calm relationship

• Less Directive – use language creatively, have a sense of humour

• Be flexible always ready to adapt what you are doing / be creative

• Stay Calm – your arousal levels matter• Strategies might work one day but not

the next, save them and try again another day.

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5. Teaching and Learning

• Novelty and Variety• Mystery and Suspense• Visuals for de-personalisation• Making lists together• Drama/role-play/puppets• Self-directed learning may work

best

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What would you do?

ENTICING a child to learn with you / alongside you / independently.

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6. Special Interests

• Learn through them rather than using as negotiating/reward tools

• Careful with rewards/praise• Say how pleased you feel – not

direct• Make praise not personal – eg.

Whole class

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7. Language use

• Remember Processing time longer than you assume so – pause / wait

• Use more complex/indirect language• Distraction• Choices• Wondering? Conversations about

things, chatting together, sharing jokes

• Disguising demands

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Changing the Narrative about Autism and PDA - FB page.

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8. De-personalise instructions /rules/corrections

• Blame something else• Health and safety Policy/The Law

/Government!

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9. Emotional Wellbeing

• Teach about emotions – literacy/words they can use.

• Teach about the science of anxiety• Teach about sensory systems• Build in routines, choices and chill out

time • Develop self awareness and self

esteems.

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The components of emotions:

• triggers, • body responses, • intensity, • behaviours, • Influences,• strategies

• www.do2learn• www.emotionworks.org

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10.Growing up with PDA – the longer term view.

• Read accounts from adults with PDA• Know life can get better • Understanding is powerful – own and

others.

https://www.pdasociety.org.uk/resources/blogsandfacebookgroups

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Resources: https://www.bbc.co.uk/newsround/25036313 - What is anxiety https://tinyurl.com/vv37syh - Autistic Not Weird blog https://tinyurl.com/y4zgcklm - Evidence based Guide to anxiety in autism https://tinyurl.com/rgbwjb2 - Research Autism Guide to Anxiety

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Case StudyPutting together a support plan and

EHCP application

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SEND system (England)

Evidence

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Websites for more information on the SEND Code of Practice, EHCPs and all that…

www.ipsea.org.uk

www.specialneedsjungle.com

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The graduated approach

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Collecting information

Parents / carers

Class team

Outside agencies

Child

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Autism Characteristicscommunication

Social interaction

Thinking and learning

Sensory

Emotional Regulation

Anxiety

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This is NOT a diagnostic

tool.

It is a guide to help

you look for the right

information

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Child’s story

Started school in Reception. Didn’t go to nursery as tried and couldn’t cope.

Reception teacher just thought she was taking time to catch up socially. Noticed she was very over emotional but seemed to be really imaginative. She played with others all the time, albeit a bit ‘bossy’.

Year 1 – seemed ok but subtle resistance and distracting happening more and more as she was asked to do sit down work.

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Child’s story

Year 2 – struggled much more. Frequent meltdowns. Parents called in and discussed support. Visual emotion work attempted but this made things worse. Little work being done in class.

Parents: had read some information about autism and thought some of it matched their daughter. Mentioned it to school. Looking at girls and autism tings together they thought it did seem like the girl.

School did try autism support strategies after discussing with parents. Parents spoke to GP about autism referral. Letter sent. Joined long waiting list.

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Girl: started to try and get out of going to school, feeling sick in the mornings. Parents once let her stay at home, she was fine after 2 minutes.

Then she started to refuse to go to school, crying, demanding, screaming, pleading, begging not to have to go.

Parents said they’d read about PDA and it seemed to fit. Showed school PDA society handout. SENCO agreed to gather evidence.

School put later start in place, sensory time when she came in, and time to join in when she was ready. This worked some days. Gave her time with the nurture teacher to talk about how she was feeling.

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Then –School paid for specialist teacher input. (ME) Asked by school to do assessment and give support advice.

Girl was happy to chat so we put together a report about what school was like for her. We discussed what a good and a bad day looked like. It was clear she really wanted to come to school and please her teacher. But some days she just couldn’t.

She explained how she made up worlds which were easier to live in than this one and sometimes she could pretend to be one of her characters.

Parents and teachers were able to explain their observations and experiences. Then we met to discuss what to do…

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Next is what we did.

Please add any questions you have in the chat box and we will try to answer them.

All children’s stories are different.

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Step 1:

Ask the child what they would like to be easier or better. Do this carefully – it could be a demand too much.

• Use visuals, • Put pictures or phrases in preferred order,• Colour code statements• Draw pictures of what a good day looks

like

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Step 1 continued:

Parents are already speaking to GP to ask for re-referral to autism pathway to look at PDA too.

SENCO putting provision map together.

Working with specialist teacher to gather information, try strategies and monitor progress.

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Step 2:

• Parents write top priorities to achieve

• Teacher write top priorities to achieve

• Suggest how that might be broken into smaller achievements

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Example:

• Child wants to decide what she wants to do each day. She says when she is in charge, she can get lots more done.

• Parents say they want her to get to school and come home without any meltdowns. (And be okay in between).

• Teachers say they want her to be able to join in some of the learning and produce some writing in school.

Everyone wants child to be safe and happy.

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Step 3:

Do the priority list. For home and school. Establish a common language to communicate what kind of day it is.

A 1 day …..A 2 day …..A 3 day …..

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Step 4:

Write an Action Plan or Individual Education Plan (IEP) with the strategies for supporting the child:

• PDA strategies• Interest based learning / enticing into

learning• Open access environment • Sensory support activities• Emotional learning and support (nurture

teacher)

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Step 5:

Organise training for staff autism and PDA

Carry out this plan and keep a STAR chart each day (Setting, Trigger, Action, Result) to help record quickly and easily a commentary each day.

Specialist teacher to oversee the training and liaise with staff to give ongoing advice.

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Date Time

Duration Setting TriggerWhat happenedimmediately before?

ActionWhat did the child actually do?

ResultHow did you/others respond?

Notes

3/4/20

9.30am

30 mins Class 2 Teacher asked the class to line up for assembly

Threw a box of pencils on the floor and said she needed to stay and clean it up.

Said we could clean it after assembly. Got very upset and refused to go to assembly.

Avoiding assembly? A 2 day not able to go.

S.T.A.R. Observation Record of Behaviours. © Lynn McCann – Reachout ASC / Mar 2020

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Step 6: Review

This was not a magic wand and did not make the child able to access all the activities in a school day.

Coming to school was easier some days but not all.

Staff felt empowered to support her differently from other children now they understood.

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Step 6: Review

Some school work was being accessed and even some writing when she was given more control and choices (eg. paper or laptop)

She was still struggling to play with others but if it was made into a ‘play’ it worked better.

She was exhausted after a day at school and often complained she was ill.

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Step 7: Next steps

Assessment by Educational Psychologist

Apply for Education, Health and Care Plan (EHCP)

Parents to take their and school evidence to ADOS assessment.

Specialist teacher to continue support for staff and to provide resources to support child.

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Step 7: Next steps

When EHCP came made sure the PDA strategies were in part E& F as provision (as they did help more than anything else).

These were taken from EP and Specialist teacher reports which detailed this approach.

1:1 support was outlined in EHCP eventually (had to go to tribunal). This has been pivotal for the child. Now shared with 2 excellent TAs.

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Step 8: The future

An EHCP doesn’t solve all the difficulties for this child. But does put extra provision in place.

Transition to KS2 and beyond is a worry for parents and teachers.

Child becoming more aware that she can’t do things others can.

Planning long term will be important.

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Final Questions?

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© Lynn McCann (2020) is the author of this course.

Please do not reuse any of this content in another format without permission from the author.

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More information and resources can be found at

www.reachoutasc.comTwitter - @ReachoutASCFB – Reachout ASC – Autism Support

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