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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PDA Webinars by Dr Judy Eaton

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The latest Published paper on PDA

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Essential reading: the latest published paper on PDA

via Important research published — PDA Society News

Governments response to the PDA petition created by Maria Smith 20th April 2018 and signed by 10,954 people.

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On the 2nd March 2016 I created a petition to generate much needed PDA awareness and understanding, sadly it only got 2,051 signatures. In April this year Maria Smith created a  similar petition which generated an incredible 10,954 signatures which meant the government had to address this issue. In two years PDA has gained 550% more attention in the public eye however read the governments response below and make up your own mind.

Let me create my own diagnosis to describe what I see here in such a response…  BUCK PASSING – It starts with so-called professionals, hence no DSM or ICD inclusion, over to NICE denial and finally the government who signpost us over to on-line training programmes! SHOCKING and UNHELPFUL!!!

So here it is…

Dear advocate4pda,

The Government has responded to the petition you signed – “Raise awareness and understanding of PDA among health care professionals”.

Government responded:

The Government takes the issue of autism, under which PDA is categorised, very seriously. We want to make sure that clinicians have the best resources available to make recommendations on autism.

We appreciate the deep frustration that you must feel in the failure to provide appropriate recommendations and care for your son’s complex needs. The Government is committed to supporting children and young people with autism, under which PDA is categorised, to enable the right support to be put in place early and reduce the longer term impact.

We acknowledge that the complexity of autism, and the multi-faceted nature of the needs of those on the spectrum, poses particular challenges to professionals and commissioners. The Government wants to make sure that clinicians have the best possible knowledge and resources available for them to make recommendations on the care and management of children and young people on the autism spectrum.

In the NHS, clinicians will diagnose in line with guidance such as the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the American Psychiatric Association’s classification and diagnostic tool, or the International Statistical Classification of Diseases and Related Health Problems (ICD-10), a medical classification list developed by the World Health Organization

The National Institute for Health and Care Excellence (NICE) publishes a number of guidelines that provide evidence-based recommendations for the diagnosis and management of autism in children, young people and adults. These can be found at www.nice.org.uk, by searching for ‘autism guidance’.

The NHS is clinically-led, and, as such, decisions such as formulating a diagnosis will be taken by clinicians in line with the relevant clinical guidelines.

In the course of the development of the (NICE) clinical guideline on the treatment of autism in children and young people (CG128), the developers looked at differential diagnoses for autism. In this, they did consider PDA, identifying it as a particular subgroup of autism that could also be described as oppositional defiant disorder (ODD). The guidance recommends that consideration should be given to differential diagnoses for autism (including ODD) and whether specific assessments are needed to help interpret the autism history and observations. However, due to the lack of evidence and the fact that the syndrome is not recognised within the DSM or ICD classifications, NICE was unable to develop specific recommendations on the assessment and treatment of PDA.

The Department of Health and Social Care has launched Disability Matters, an innovative programme providing free online e-learning and face-to-face training resources. It covers over 30 topics related to disability and special educational needs, including autism, and the aim is to provide a basis for professional development for anyone working with people with complex needs. Disability Matters can be found at www.disabilitymatters.org.uk. This resource is being kept under review, and officials will ensure that information and guidance on PDA are considered for inclusion once a verdict regarding this condition has been reached.

Additionally, The Children and Families Act 2014 places a renewed focus on the early identification of needs and under the SEND Code of Practice schools are expected to identify and support needs such as communication and social skills.

Department of Health and Social Care

Click this link to view the response online:

https://petition.parliament.uk/petitions/202680?reveal_response=yes

The Petitions Committee will take a look at this petition and its response. They can press the government for action and gather evidence. If this petition reaches 100,000 signatures, the Committee will consider it for a debate.

The Committee is made up of 11 MPs, from political parties in government and in opposition. It is entirely independent of the Government. Find out more about the Committee: https://petition.parliament.uk/help#petitions-committee

Thanks,
The Petitions team
UK Government and Parliament


You’re receiving this email because you signed this petition: “Raise awareness and understanding of PDA among health care professionals”.

 

LA Watch: Dodgy SEND policies, parent power and how to fight the cuts! — Special Needs Jungle

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One of the joys of being a parent of a child with special educational needs is working out why schools and local authorities do things the way they do. Sometimes … The post LA Watch: Dodgy SEND policies, parent power and how to fight the cuts! appeared first on Special Needs Jungle.

via LA Watch: Dodgy SEND policies, parent power and how to fight the cuts! — Special Needs Jungle

PDA Society Survey

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The PDA Society is conducting a survey about experiences of life and support for those with the PDA profile of ASD. We’d be most grateful if you could take a few minutes to complete it and please share details of the survey as wide & far as possible.

via PDA Society Survey — PDA Society News