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


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, 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 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:

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:

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


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


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

SEND Newsletter – January


Explore the latest news and find out how to have your say on Surrey’s special educational needs and disability services (SEND).

SEND Newsletter – January

SEND news masthead

January 2018

Take our short ‘survey’ and you could win a gift voucher

We need you to tell us how we can improve ‘SEND NEWS.’

Please complete our short survey asking for your views on our SEND newsletter, and you will be automatically entered into our prize draw with the chance to win one of three £50 gift vouchers on offer.*

*Please note: Surrey County Councillors and employees of Surrey County Council and their families are not eligible for the prize draw, although everyone is welcome to complete the survey to give their views. The closing date for this survey is Saturday 31 March.

Join the SYAS webinar on Tuesday 13 February

SYAS (SEND Youth Advisors Surrey) are pleased to be hosting their first ever young person led webinar on Tuesday 13 February 2018, from 2pm to 3pm. There will be four or five young people on the webinar panel, ready to answer any questions or queries about their experiences of services and explain about some of the projects that they have been involved in.

SYAS are currently running a creative art competition and the winner of the competition will be announced during the webinar.

The team are keen for as many people as possible (young and old) to join the webinar. To sign up, please email;

An example of successful transition to mainstream education

Jan Downs, Head of Centre at de Stafford School, explains how former West Hill students have thrived in their new environment in a mainstream school. Inclusion and Special Educational Needs and Disability (SEND) at de Stafford School aims to identify and overcome potential barriers to learning and to meet the needs of all SEND students within the school setting.

“Just four months into my new role, with only five students in our Communication and Interaction Centre, our school was approached by the local authority to consider taking additional students into Year 10, with the potential to sit their GCSEs at the end of Year 11. These students had diagnoses of Autism Spectrum Disorder with associated communication needs and were being educated in special provision for students with Learning and Additional Needs. As a school deeply committed to inclusive education we could not refuse and so an innovative and exciting partnership began to take shape.”

Jan Downs continues, “As well as adapting to a mainstream education the four boys were in a social minefield. But, ‘out of adversity comes opportunity’ (Benjamin Franklin), and these young men took the opportunity to embrace the challenges head on.”

Ultimately, Jan is pleased that this was an extremely positive experience for all of the students involved. “Two of the students achieved 6 GCSEs at the equivalent of A*-C including English and Maths – they were in the top 20% of the year group for value-added progress in terms of their KS2 starting points. Another achieved 6 A*-D (grade 4 in Maths) and also completed the Duke of Edinburgh Bronze Award with us. The fourth student struggled with the exams, but he did secure a college placement. He also made huge progress with his social interactions and self-confidence.”

Jan concludes, “de Stafford School are extremely proud of the way in which the four boys integrated and developed within our setting and they all deserve great credit for adapting so well. The achievement of these young men was down to their determination to succeed in mainstream and the dedication and care of the staff that taught them. A fitting and uplifting validation of the initiative resulted in one of the boys receiving a special recognition award for his attitude and progress in GCSE English at our Year 11 Celebration Evening in November.”

Apply for the Disability Access Fund now

The Disability Access Fund (DAF) is easy to apply for and childcare providers will receive £615 for each eligible three and four year olds in receipt of Disability Living Allowance. The fund is available each financial year for eligible children, so make sure it is used.

Who can apply?

All childcare providers registered to deliver Early Years Free Entitlement can access Disability Access Funding for eligible children.
Children do not have to take up the full 570 hours of early education in order to receive the Disability Access Fund.

How can it be used?

It is up to the childcare provider to decide how they spend the Disability Access Fund, however, it must be used to make reasonable adjustments to support individual children and promote inclusion.
Any equipment or resources purchased from the DAF will remain the property of the childcare provider.

So apply now

It’s quick and easy. For further information and to apply, visit the Disability Access Fund page on the Surrey County Council website.

Please note: Practitioners and professionals should contact their relevant area SEND Team, (please contact if you are unaware of your area’s email address).

SYAS creative art competition; your chance to win £50 in vouchers

SYAS (SEND Youth Advisors Surrey) are running a creative art competition. Anyone can enter, all you need to do is produce a ‘SEND themed’ creative art piece. All entrants will be in with a chance of winning £50 worth of vouchers.

The types of creative art you may choose to enter could include:

  • a piece of artwork
  • a poem
  • a piece of creative writing
  • a video
  • a creative piece of audio.

If you, or someone you know, would like to enter, you can either email the Rights and Participation team; or send your entry to:

SYAS creative art competition,
The Rights and Participation team,
Quadrant Court,
35, Guildford Road,
GU22 7QQ.

All entries must be received by Wednesday 31 January.

The winner of this competition will be announced during the first ever SYAS webinar, to be held on Tuesday 13 February. You must sign up for the webinar to find out if you have won.

New policy on ‘Touch and the use of restrictive physical interventions’

Surrey County Council has launched the new policy on ‘Touch and the use of Restrictive Physical Interventions (RPI)’.

Extensive support from across the system has helped to create this new policy. Support came from the MAPA (Management of Actual or Potential Aggression) training team, Phase Council heads, Health and Safety teams, the Education Safeguarding team, Unions and Children’s Services. This new policy replaces the 2010 policy previously in circulation.

Visit the Surrey Local Offer to view the new ‘Touch and the use of Restrictive Physical Interventions’ policy.

If you have any questions about RPI please contact Jacqui Reeves in the MAPA training team; or for any comments on the content of the policy, please contact Kathrine Everett;

For more information, read the Department of Health/Department for Education draft guidance and consultation (Nov 2017).

Highlighting Family Voice Surrey’s CAMHS research

A Family Voice Surrey report highlights the struggle many Surrey families experience when trying to get treatment for their children’s mental health conditions by CAMHS (Child and Adolescent Mental Health Service).
The research, carried out between June and October 2017, included 96 responses to a detailed survey and in-depth interviews with parent carers. Recommendations have been accepted by Surrey County Council’s Children & Health Select Committee and raised with Surrey’s Cabinet.

Visit the Family Voice Surrey website, to view a summary of the findings or download a full copy of the report.

Surrey County Council and the Surrey and Borders Partnership have recently offered a response to the findings of this research.

Surrey County Council and local clinical commissioning groups (CCGs) have a clear commitment to and are taking action to improve CAMHS services in Surrey, both from Surrey and Borders Partnership (SABP) and other partners delivering this key service. A Performance Improvement Notice has been in place to increase momentum on progress and impact. Specific action in relation to patient experience includes on-going involvement of CAMHS Youth Advisors (CYA) and Family Voice Surrey in contract management. A needs assessment of emotional well-being and mental health needs has also been completed with input from a range of service users and key stakeholders – this will inform future commissioning.

SABP have developed their own wide ranging action plan to drive improvement and reduce waiting times. This includes training to be undertaken of what makes a good assessment appointment, including how families are communicated to throughout the session and then after the assessment, working the Mindsight Surrey CAMHS partners to help cater for the increased demand, a detailed Patient Experience Survey led by ‘Healthwatch Surrey‘ and working closely in association with CAMHS Youth Advisors (CYA).

Tracking Surrey’s progress on the number of EHCPs completed on time – a review of 2017

Surrey County Council states, “We monitor the proportion of EHCPs completed within 20 weeks over a rolling 12 month period, to see whether improvements are being made over time. Over the last year, timeliness has more than doubled and we have exceeded our target for December by 3 percentage points. This target was agreed as part of our Written Statement of Action.”

In a letter to the Interim Director of Children’s Services, with regards to delivery of the Written Statement of Action, the Minister for Children and Families reflected that “I am pleased to see evidence of substantial progress with your Written Statement of Action over the last 12 months…….. However, it is clearly important to build on a positive 12 months and continue apace to bring about the long-term sustainable improvement that is required.”

In conclusion, Surrey County Council states “We will continue to prioritise the commitments as laid out in the Written Statement of Action whilst pursuing our ongoing improvement activity with families, young people and partners across the SEND system. For more information, please visit the Surrey Local Offer website.”

*Please view the graph below.

*The graph shows the percentage of Education, Health and Care Plans (EHCPs) completed within the 20 week statutory timeframe, over a 12 month period, by month. Each bar shown represents 12 months’ worth of data (e.g. the ‘December’ figure is for the 12 months to the end of December 2017). This is shown against the council’s targets, as agreed in the Written Statement of Action (WSA). The graph reveals a steady improvement in the percentage rates (for virtually every month of the 13 months covered), from 27% in December 2016 to 58% in December 2017.
The figures on the graph indicate: December 16: 27%, January 17: 28%, February: 30%, March: 33%, April: 37%, May: 41%, June: 44%, July: 49%, August: 51%, September: 55%, October: 58%, November: 58%, December: 58%.

Free courses for parents and carers of children with autism

The National Autistic Society (NAS) Surrey Branch will be hosting two-day ‘Cygnet’ courses for parents of children with autism (aged from five to 18 years old). The course will help participants to gain a better understanding of autistic spectrum conditions. They will also learn about practical strategies to use with children and find out about some of the relevant resources available.

The two-day ‘Cygnet’ programmes will be held on the dates below.

  • Dorking on Wednesday 7 and Thursday 8 March.
  • Guildford on Tuesday 8 and Wednesday 9 May.

The two-day programmes are designed to

  • Increase the participant’s understanding of autistic spectrum conditions.
  • Help parents / carers develop their knowledge of how a child on the autistic spectrum experiences the world and what drives their behaviour.
  • Learn about practical strategies to use with children.
  • Find out about relevant Autism Spectrum Disorder (ASD) resources.
  • Help parents / carers meet with others to gain support and learn from each other.

This two-day course is FREE for families in Surrey to attend, although BOOKING IS ESSENTIAL. Please note, to reserve your place a £10 deposit per person is required, (this deposit will be returned on completion of both days of the course).
To book your place, please email Sarah Mead at with ‘Cygnet’ and your preferred location in the subject line.

For details of other news and events, visit the website of the NAS Surrey branch.

Two new CYP Havens opening soon

A CYP Haven is a safe space where young people can talk about their worries and mental health in a confidential, friendly and supportive environment. In addition to the existing Guildford CYP Haven, two new havens will open over the next two months.

Who can visit a CYP Haven?

Any young person can use the service, as long as they are aged between 10 and 18 years of age and in need of emotional support because they are concerned about how they are feeling. Young people don’t have to call or book an appointment; they can simply turn up during opening times.

What happens there?

Anyone visiting a CYP Haven will be welcomed and made to feel comfortable. The staff will listen and take time to understand what the issue/s may be. If appropriate, they will try to help the young person access a particular service that may be able to help their situation.

The locations of the three safe havens are

  • *Epsom – The Focus Youth Centre, 9, Depot Road, Epsom, KT14 4RJ
  • Guildford – The Discovery Centre, 7, Ward Street, GU1 4LH
  • *Staines – Leacroft Youth Centre, Raleigh Crescent, Staines, TW18 4PB

*The CYP Haven in Staines is due to open on Tuesday 6 February and the CYP Haven in Epsom is planned to open early in March. Both of the havens are scheduled to have a formal opening later in the Spring.

For opening times and full details of the Guildford CYP Haven, visit the CYP Haven website.

Blue Badge eligibility consultation; Have your say

The government is proposing changing the eligibility criteria for the Blue Badge (disabled parking) scheme to include people with non-physical conditions and a new consultation on eligibility has begun. People with hidden disabilities may currently be finding it difficult to access badges, even though their condition causes them very significant difficulties when undertaking a journey. These proposals may make it easier for people with conditions such as dementia and autism.

Sarah Lambert, Head of Policy at the National Autistic Society, welcomed the proposal and said amending parking permit access could be “a lifeline” for many autistic people, who often do not qualify under current regulations.

Autistic people can suffer anxiety from not being able to park in a predictable place close to their destination, and some can “experience too much information” from the environment around them on public transport.

“We hope the Government will make this important change and we look forward to working with them to make sure that autistic people and their families benefit.” Ms. Lambert said.

You can find information on current eligibility criteria for a Blue Badge on the Surrey County Council website.

Take part in the consultation on the Blue Badge parking scheme eligibility review to let them know why it’s important to you.
You can contribute, as an individual, as a representative of a disabled person or representing a disability group. This eight-week consultation is open until Sunday 18 March 2018.

Find out about SEND commissioning

The council and its partners buy a wide range of different types of services to support children and young people with SEND. There are often dozens of different providers to choose from, including charities, community groups, private firms and specialist providers. SEND commissioning is the term used to describe the process of identifying what needs there are and what is available in the marketplace, and then assessing who should be awarded contracts to provide the different services.

A specialist SEND Commissioning team within the council works with other colleagues in the council and the health sector, as well as SEND families, to determine which providers can deliver the right mix of services in different locations in the county at the right time and at the right price. They also draw up strategies to deal with gaps in provision, for example in speech and language therapy or short-breaks offering learning and social interaction opportunities.

The SEND Commissioning team’s key priorities for 2017-20 include

  • Reviewing social, emotional and mental health (SEMH) support in Surrey schools.
  • SEND provision for young people aged 19 to 25.
  • Early Years SEND.
  • Development of employment focused pathways for post-16 pupils.
  • Hospital school provision.

Since it was set up in 2017, the team has launched a new school-aged Speech and Language Service, established a pilot for five-day college provision, and increased the number of supported internships in the workplace. It has also completed the initial research for the 19-25 review, the Early Years review, and the SEMH review.

Much of this work will continue in 2018 as Surrey looks to improve outcomes for children with SEND.

For further information about the work of the SEND Commissioning team, email:

The alternative educational setting looks very different…


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.


👉 What to reply when told PDA (Pathological Demand Avoidance) does not exist/is not recognised in your area 👈 By Planet Autism


Planet AutismLiked

👉 What to reply when told PDA (pathological demand avoidance) does not exist/is not recognised in your area 👈

A clinician can diagnose a condition which is evident before them, it does not need to be in diagnostic manuals to do so, the manuals are about allocating diagnostic codes to descriptions of conditions. Having said that, PDA as an ASD, is present in diagnostic manuals as an ASD diagnostic code. For the DSM-V it would be diagnosed as ASD as they diagnose all ASDs under one umbrella now, DSM-V code 299.0 (autism spectrum disorder). For the ICD it would be either (ICD10 F84.0 (autistic disorder), F84.8 (Other pervasive developmental disorders) or F84.9 (Pervasive developmental disorder, unspecified), but noted on diagnostic reports as ASD-PDA subtype, ASD-PDA profile, ASD with demand avoidance profile etc.).

PDA is a specific profile of behaviours and is an ASD. You cannot deny a profile of behaviours exist! It does constitute an ASD subtype which isn’t individually mentioned in the diagnostic manuals – yet. But it’s looking likely that the ICD11 will follow with the DSM-V diagnosing all ASDs under one umbrella, so from that perspective it’s irrelevant. However, PDA does need different strategies and support.

This is why there is a DfE endorsed educational guidance document:

“The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice”…/5.2-strategies-for-teac…

Read this excellent article by Dr Judy Eaton (consultant clinical psychologist with years of experience in NHS and private sector, expert in ASD as well as PDA):…/back-to-school-for… she explains very well how families suffer when LAs and NHS take this attitude of PDA not existing and clearly states that PDA does exist.

“Informs local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions.”

There is a growing body of research about PDA:

“Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)”

Point out that if the Department for Education recognises it, that’s central government and that should be enough. The NAS recognises it and they are the UKs major autism charity which is government funded.

Look on the NHS England website for your area’s Sustainability and Transformation Plan (STP) and see if your local plan says anything about making care uniform across the region, losing the postcode lottery, improving varied care etc. because there may be a town in your area which recognises PDA and another that doesn’t. You can use this information as the STP covers everything, including mental health issues.

Have answers for every denial they offer. Don’t passively accept what they say, a lot of it is based in ignorance.

Known NHS areas that have diagnosed PDA (there will be others):

Kilmarnock, Ayreshire and Arran, Scotland
Stratford-upon-Avon, Warwickshire
Stroud, Gloucester, Gloucestershire
Bradley, Stoke, Staffordshire
Liverpool, Merseyside
Todmorden, Lancashire
Sheffield, Yorkshire
Stourport-on-Severn, Worcestershire
Hawley, North Hykeham, Lincolnshire
Wolverhampton, Midlands
Nottingham, Midlands
Northampton, Midlands
Lincoln, Midlands
Birmingham, Midlands
Bristol, Avon
Slough, Berkshire
Reading, Berkshire
East Sussex
Andover, Hampshire
GOSH (NHS) London
Guildford, Surrey