Poem written for PDA Action Day 15th May 2018

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PanDA, me & I

The flip side of me

Is a Panda you see

Its not double trouble

But sure is a struggle

Understand the whole me

Include Panda I plea

Coexistence we strive

To help us all thrive

But Rolling resistance

Best describes our existence

Don’t say to us ‘NO’

Or Panda will blow

Too much long chatter

Just sounds like a clatter

It helps to have choice

So allow us a voice

Communication break-down

Why must we drown?

In opinions so strong

We want to belong

A N X I E T Y free

Is the magical key

A formula to master

If not then sadly disaster!

Panda, me & I

Isn’t a pie in the sky

Excluded from schools

Panda struggles with rules

Being left-out is a sin

We want to join in

Restrain us they say

They’re unable to play

Frustration to take part

Having friends is an art

Anger is what’s seen

But that’s not what we mean

Our rules aren’t the same

Please try not to blame

Its unfair being this way

Wearing this mask everyday

Judgment, cross faces

Confusion & strange places

Take us from here

And remove all of this fear

Tippy toeing not necessary

Parental vocabulary

We need the control

Or becomes a sinkhole

What’s important for you

Might be a battle to choose

No it’s not so absurd

Panda needs to be heard

Help panda, help me

Then you will all see

In order to succeed

Understand don’t impede

Pre-empt & distraction

To soothe Pandas reaction

Information needs time

Slow processing isn’t a crime

Indirect instruction creates

Direct demand devastates

Panda may often be wrong

Avoidance obviously strong

Acceptance of us is a must

Over time it builds up our trust

Empower us to fully function

Minimise our fear of destruction

So keep all this in mind

And then you will find

A better day will unfold

Thank you, our story is now told.

 

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The alternative educational setting looks very different…

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My son is turning 15 this week, so I thought I’d write a little blog update.

Back in April last year I eventually pulled my son out of a very harmful school situation. Shocking details which I will refrain from sharing here. I have no doubt that one day the truth about their lack of care and handling of autistic/PDA children will eventually be known.

Sons statement reads: Autistic Spectrum Disorder with a closer description of Pathological Demand Avoidance Syndrome.

The alternative educational setting is actually better described as a farm. Son began last September and to date, what a difference they have made… my son is actually settled and happy.

Although his journey each day is longer, once there his days are broken up into bite size chunks; a combination of short classroom activities, outside creative lessons, tending the farm animals, learning farm skills, woodwork, sport, outings and overall building self esteem and team work.  Not only is he working towards BTECs but he has the opportunity to learn real life skills which can be used in years to come.

The staff are a unique, dedicated, passionate team. They combine their interests, skills and creativity to inspire the twelve children who attend. Rather than pushing and pulling the children through a tick box driven environment, they adapt, they actually think outside the box and they are making it happen, such a refreshing difference.

Long may it continue.

 

Why did my PDA son have to fail in five schools before I was listened to?

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This post is with our huge thanks to:
Special Needs Jungle – http://www.specialneedsjungle.com
for their continued support in raising the profile of Pathological Demand Avoidance Syndrome.

Why did my PDA son have to fail in five schools before I was listened to?

#PDA Awareness Day- Sunday 15th May 2016

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PDA Awareness Day is Sunday 15th May (thats this weekend:-)

As its National Limerick Day today I thought Id make up a little limerick for Sunday… If you like it, please feel free to share especially on PDA Sunday x

Autism they said is like Rainman
PDA they said is naughty kid syndrome
They have closed minds bound by fear
and would rather we all just disappear.

Judgemental faces they simply cannot relate
Instructing us to medicate & sedate
They really don’t want to understand
Nor will they ever try to lend a hand.

Don’t look down on us with expression so glum
We simply march to the beat of our own drum
My last point for your personal reflection
is wake up people, we are all on the spectrum!

An informative PDA post

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http://autismexperts.blogspot.co.uk/2013/03/natures-answer-to-over-conformity.html

Summary of findings from PDA questionnaire by Emma Gore Langton

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Emma Gore Langton UCL Educational & Child Psychology Doctoral Research

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Research into the educational experiences of children with PDA:
Summary of findings

This research asked parents who believed their children to have PDA to report on their children’s educational experiences using a questionnaire. Parents were recruited via the National Autistic Society’s PDA conference, and online via PDA support and information forums, and social media and networking sites (e.g. Facebook and Twitter).

Who took part?

Forty eight parents took part. Children were aged between four and 17 with an average age of 10. Thirty seven percent of children were female.

  •   49% had a diagnosis of PDA
  •   63% had a diagnosis of some form of autism spectrum condition (autism, Aspergers,

    autism spectrum disorder/condition, atypical autism)

  •   75% of children with a diagnosis of PDA also had a diagnosis of some form of ASC

    On the Extreme Demand Avoidance Questionnaire, an index of risk measure developed by Liz O’Nions and Professor Francesca Happé at the Institute of Psychiatry, children had an average score of 65, of a possible maximum score of 90.

    On the Strengths and Difficulties Questionnaire, a widely used measure, ninety seven percent of children scored in the ‘Abnormal’ range on their total level of difficulties.

    School behaviours

    In their worst term at school…

  •   69% of children had refused to attend at least sometimes
  •   79% had refused to comply at least sometimes
  •   71% had attempted to leave the classroom at least sometimes
  •   42% had attempted to leave the school site at least sometimes
  •   42% had hurt themselves at least sometimes
  •   48% had hurt staff at least sometimes

    Levels & type of support

  •   60% of children had Statements of Special Educational Needs
  •   A further 10% were currently undergoing Statutory Assessment
  •   56% of children were receiving some level of 1:1 support each week
  •   31% were receiving between 25 and 32 hours of 1:1 support each week

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Emma Gore Langton UCL Educational & Child Psychology Doctoral Research

 Of the 44% of children not receiving 1:1 support, 33% were in specialist provision, and a further 14% were either being educated at home or had no educational provision.

Use of support organizations

  •   69% of parents had accessed Contact a Family
  •   69% had accessed the PDA Contact Group, an online information and support site
  •   65% had accessed Parent Partnership
  •   14% reported accessing the National Autistic Society or its local branches

    Involvement of professionals

  •   88% of children had seen an Educational Psychologist, suggesting difficulties were experienced in school
  •   69% had seen a Clinical Psychologist, suggesting difficulties were not only experienced in the school context
  •   60% had seen a Speech and Language Therapist
  •   48% had a CAF (Common Assessment Framework), indicating the involvement of

    multiple agencies

    Placement types

  •   96% of children had begun their education in a mainstream school
  •   By their second placement, only 64% of children were still in a mainstream school
  •   By their third placement, only 14% were still in mainstream school
  •   At the time their parents took part in the research, only 52% of children were

    attending a mainstream school.

  •   Children were attending a wide range of specialist provision, including ASD (19%),

    EBD (8%), Pupil Referral Units (4%) and SLCN provision (2%).

    Placement breakdowns and exclusions

  •   51% had experienced at least one move due to their educational needs. This included parents choosing to move their child because the school was not meeting the child’s needs
  •   25% had experienced at least one permanent exclusion
  •   8% had experienced at least one ‘managed move’
  •   38% had experienced at least one fixed term exclusion
  •   20% had experienced four or more fixed term exclusions

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Emma Gore Langton UCL Educational & Child Psychology Doctoral Research

Placement success

Despite the considerable educational difficulties indicated by parents’ responses, parents tended to rate their child’s current placement fairly positively, with an average ‘success’ rating of 6/10.

The following factors were identified by parents as defining a ‘successful’ placement:

  1. Child outcomes
    •   Children were willing to go to school and had regular attendance
    •   Children were engaged with learning and made progress, achieving their

      potential

    •   Children were happy and not anxious
    •   Children learnt to interact and had friends
    •   The child and others were safe from dangerous behaviours
  2. School factors
  •   The school was flexible, thinking of the child’s needs on an individual basis and trying different approaches
  •   The school was able to ‘cope’ with the child’s behaviour
  •   The school was understanding towards the child’s needs and difficulties
  •   The school worked in partnership with parents
  •   The physical environment of the school was suitable for the child’s needs

3. PDA specific factors

  •   The school acknowledged and accepted that the child had PDA and needed a PDA approach
  •   The school knew about PDA and interpreted the child’s behaviour within the framework of PDA

    Key Messages

    This was the first research to look systematically at the educational experiences of a large group of children with PDA. The findings suggest that many children with PDA experience high rates of challenges in education, including:

    •   Displaying a range of hard to manage behaviours at school
    •   Requiring high levels of additional support in school
    •   Having multiple professionals involved with supporting them
    •   Experiencing high rates of fixed term exclusions
    •   Experiencing placement breakdowns due to permanent exclusion or its alternatives (‘managed moves’ or parents moving their child)
    •   Being educated in specialist provision
      For more information please contact: emma.langton.10@ucl.ac.uk

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DSM-5 what does it mean for the autism community – Talk about Autism

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http://www.talkaboutautism.org.uk/page/liveevents/dsm5debate.cfm?utm_source=Newsletter&utm_medium=email&utm_content=taa25dsmtranscript&utm_campaign=taa_25

 

DSM-5: What does it mean for the autism community? – 28 May 2013,…