👉 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”
http://www.aettraininghubs.org.uk/…/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): https://help4psychology.blogspot.co.uk/…/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.

https://www.pdasociety.org.uk/education/teachers-guide

“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:

https://www.pdasociety.org.uk/resources/published-articles

https://sites.google.com/site/lizonions/publications

“Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820467/

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. www.autism.org.uk/about/what-is/pda.aspx

Look on the NHS England website for your area’s Sustainability and Transformation Plan (STP) www.england.nhs.uk/stps/view-stps/ 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

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Not quite a Valentine poem!

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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!

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!

Christmas carols through the red mist

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Today was the dreaded Christmas carol sing along at my sons school. For the last two years he hasn’t coped with all the chattering noise, pre-christmas excitement and expectation to perform. The first year he managed one and a half carols, last year he managed almost one and we left early, and this year he broke down completely. You may ask why do I continue to allow him to participate? The thing is, each year he is a new child, and many things he didn’t cope with last year he manages well this year. He rehearses the songs and enjoys the music, but on the day it all becomes too much to cope with. So whilst the other children sang ‘Rudolph the red nose reindeer’ he huddled in a corner whimpering. His teacher and teaching assistant were lovely and spoke gently to him trying to ease his anxieties, they accepted he needed some space and allowed us to retreat to a quiet room to help him to relax. I got him a plate of food from the buffet and he munched through it whist spinning on a chair, I hoped he would feel comforted, and he seemed to show signs of winding down. I asked him if he would like to leave, he didn’t answer but instead spoke about a wooden tank that he had made and wanted to show me, he bolted off saying he had to find a teacher who could unlock the woodwork room, I caught up with him, as he frantically scurried through the hall ways, shouting, “I must find him!” The carols sang out, ‘Let it snow, let it snow, let it snow’ whilst my son sang out, “Where the f… is he?” I tried to explain to him that all the teachers were with the children and parents singing, and it may be easier to find him if we wait until the end of the carols. He reluctantly agreed, and finally we joined the others in the hall, and for a brief moment I felt relief, but it was brief, he had made up his mind that he wasn’t staying, and this time bolted through all the parents who were teary eyed watching their little ones singing, ‘The Bear and the Hare’ such a beautiful tune –  (http://www.youtube.com/watch?v=XqWig2WARb0). He tried to get out of the school front door, which was locked and supervised, his shouting began to penetrate through the children’s singing, so the children sang louder to try to drown out his noise. We opened the front door for him to leave to be able to get some fresh air and cool off, but it was too late the red mist had descended and he was beyond all reasoning, he kicked every wall, he hit out, punching and swearing loudly, the children continued to sing as loud as they possibly could, eventually my son had to be dragged outside because he was like a wild animal caught in a trap, he desperately needed freeing. Once outside he ran to the middle of the playing field and paced as if still confined by walls. I stood watching him from a distance, but just insight so that he knew I was there for him; my tears stung my eyes as I held them back; I love him so much but when he’s like this, I feel so helpless, he feels out of my reach, as if he is transported in his mind to another place; his pacing eased and he then stood still staring into the sky. The singing had ended and I noticed the children and parents had begun to leave, one parent approached me and said, “Try not to worry my little Tommy has moments like that, he’ll be ok”, I felt like I was about to crumble into a blubbering heap, but I turned back to look at my son who was slowly walking towards me, I felt anxious, I waited and stood still as he approached, he hesitated about a metre away from me but didn’t look at me, he looked down. I wanted to grab him and hug him and tell him that it was alright, that it didn’t matter, that it wasn’t his fault – but instead I stood and waited because I knew that was all about what I wanted to do, I wasn’t sure what he needed; he eventually moved up close to me, still not looking at me he butted his head into me and said, “Im so sorry mum, I just couldn’t help myself, I just want my tank and to go home”. His lovely teacher unlocked the woodwork room and retrieved his tank, “Thank you so much sir, I’m so sorry”. They were all very understanding and reassured him with kind words. On the journey home, he sought reassurance from me too, I wanted him to know my unconditional love for him but I also didn’t want to pretend that nothing had happened, so I said, “I love you sooo much, but it makes me feel sooo sad to see you that unhappy and angry.” Tears rolled down my face, and he looked at me and touched my face, and said again “I’m sorry” (he often says sorry in his everyday conversations, even when it’s not required, he seems to use it as a pattern of speech and I wonder how much he understands), so I said, “it’s not about saying sorry darling, I just wish for you to feel happiness”. Later that evening, after his bath, when he was relaxed we talked some more. I explained to him about how he is getting bigger and stronger (he will soon be eleven, but he is more like the size of a big strong fourteen year old). I asked him, “How did you feel to see me looking sad?” He said, “You still look sad in your eyes, and it makes me feel sad” and I explained to him that was why I felt sad, because it hurts my heart when I see him so angry and sad. He kissed me on the cheek and said, “Smiling is better”, I smiled at him and he smiled back and then said, “A horlicks and two biscuits, that would really make me smile” 🙂

Now he is in bed and settling to sleep, now it’s my quiet time to reflect on how I handled the situation, question what I could have done better, what I should and shouldn’t have said, how I can teach him better coping skills – I type this, I cry, I feel tired, I feel useless, I think about The Bear and the Hare – Why does my heart feel so heavy?

The PDA Resource Page

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The PDA Resource Page

Wonderful PDA informative site, with links, stories, helpful contacts and support.

x Remember you are not alone x

The NAS has launched a petition calling on the Government to amend the Children and Families Bill to create a single point of appeal for challenging provision in Education, Health and Care Plans.

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http://specialneedsjungle.com/2013/08/19/nas-petition-single-point-of-appeal-for-ehc-plans/

Take action today by signing their petition