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


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👉 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

Edu. Update


They tried to clip your wings dear boy

They tried to rearrange you

They tried with all their might

But their efforts could not change you… Thank god!

What is the relevance of this simple poem?

I am so proud of my son, his resilience and strength of character. Having experienced recent changes at sons school it saddens me to have to write that I was left with no choice but to pull him out of there. The school changes had such a significant impact on his health and mental well-being that last month he was signed off by the doctor for high levels of stress. Schools have a lot to answer for with many teachers / OT’s who should be in different jobs!!!

Not quite a Valentine poem!


The Incident

Ring ring goes the phone

Number I note and voice so distinct

Mrs. Young, oh good you are home

Heavy heart, deep sigh

Chin drops to the chest

Not again, with exasperated cry


The common line that I dread

There’s been an incident

That bloody line rings in my head

There’s one thing for sure

It will be written on my gravestone

When I am no more


I listen to the chaos unfold

The triggers always unknown

A sudden chill makes me go cold

Coping mechanisms none were in sight

He struggled, he swore

Frustration, fear, fight and flight


The incident told with detailed description

Honesty yet delicate in her delivery

Underlined with such great precision

I hold the phone ever tighter

Pursed lips, eyes closed

Will his life ever get brighter?


Her reassurance that, ‘This too shall pass’

Don’t worry, calm has now resumed

And he’s happy again, back in his class.

However a report she now needs to make

It’s the same process for all

It’s purely for Health and Safety sake.


Not as many incidents so far this year

They say, he’s doing quite well

But there will be more yet I fear.

Ring ring goes the phone

The number I note

But this time I hide, there’s no-body at home!

Jekyll and Hyde or Pathological Demand Avoidance Syndrome (PDA)?


Updated January 3rd, 2016. This post will be updated on an on-going basis I have written this blog specifically to educate, advocate and provide awareness for an unknown syndrome in Australia, call…

Source: Jekyll and Hyde or Pathological Demand Avoidance Syndrome (PDA)?