PDA Support Group for parents and carers (West Berks)

Last updated: 08/01/2024

We are a friendly and supportive group of parents and carers whose child either has a PDA diagnosis, or who suspect PDA and want to learn more about it.  The group was founded in 2017 by local mum Leila Cox (mother to a PDA boy and ex PDA Parenting Practitioner at Parenting Special Children) to connect with others locally in the same situation.

 

PDA (Pathological Demand Avoidance) is a form of autism where the individual struggles to comply with the daily demands of everyday life and their anxiety (and need for control as a result) is often so high they can be immobilised and unable being able to do simple things - such as getting up, getting dressed, teeth brushing, eating, toiletting etc (see www.pdasociety.org.uk for more info).  They will use various avoidance strategies as a coping mechanism, which can range from 'meltdowns' to distraction to role play or other creative means.  They often do not appear 'classically autistic' as communication skills can be superficially very good and often they become skilled at masking their anxiety in public, but then it comes out strongly in the home.  Often they have difficulty with attending school and other important things such as medical appointments, or even things they want to do such as leisure activities.  These difficulties and behaviours are all caused by anxiety and are very hard for the individuals themselves, and also incredibly challenging for those around the person with PDA too.

 

The support group is now primarily on Facebook (its a private group restricted to PDA parents and carers ONLY) but you can also meet face to face with Leila and other PDA parents from the group at the Newbury SEND Parent Carer Cafe, which runs biweekly on Friday mornings during term-time (see the separate entry for the cafe for more details - Leila runs the cafe and hence is available there to chat to PDA parents). 

 

Our PDA group on Facebook can be found by searching on Facebook for 'West Berks PDA Support Group' and requesting to join - subject to your answers to the screening questions.  Only parents or carers of PDA youngsters (or suspected PDA) are accepted to join and we need to keep it a safe space where only parents in the same boat are members.  We are fortunate to have many compassionate, kind and supportive members who are willing to help one another through their experiences, difficulties, worries, and advice and the group contains much collective experience and encouragement, so please do connect with us if you are in need of PDA support locally. 

 

Leila

 

 

Who to contact

Contact Name
Leila
Contact Position
Founder of West Berks PDA support Group
E-mail
leila@westberkspdasupportgroup.co.uk
Website
PDA Support Group for parents and carers (West Berks)
Facebook
https://www.facebook.com/groups/1065244136948087

Where to go

Name
We meet bi-weekly during termtime at West Berkshire Mencap. See the entry under 'Newbury SEND Parent Carer Cafe' for full details

Time / Date Details

When is it on
11.00-12.30am on the following Fridays (2024): Fri 12th & 26th Jan Fri 9th & 23rd Feb Fri 8th & 22nd Ma
Time of day
Morning
Lunchtime
Session Information
See information about our in-person support meetings on the entry for Newbury SEND Parent Carer Cafe

Other Details

Costs

Table of costs
Table of costs
AmountCost Type
Free

Availability

Age Ranges
Referral required
No
Referral Details

Self refer by requesting to join on Facebook

Other notes

I run this group as a voluntary role in my own time (as a fellow mum of a PDA child), so I just ask that users respect that its not a professional service, and bear with me if I don't respond instantly. Thanks!

Local Offer

Description

We are a friendly and supportive group of parents and carers whose child either has a PDA diagnosis, or who suspect PDA and want to learn more about it.  The group was founded in 2017 by local mum Leila Cox (mother to a PDA boy and ex PDA Parenting Practitioner at Parenting Special Children) to connect with others locally in the same situation.

 

PDA (Pathological Demand Avoidance) is a form of autism where the individual struggles to comply with the daily demands of everyday life and their anxiety (and need for control as a result) is often so high they can be immobilised and unable being able to do simple things - such as getting up, getting dressed, teeth brushing, eating, toiletting etc (see www.pdasociety.org.uk for more info).  They will use various avoidance strategies as a coping mechanism, which can range from 'meltdowns' to distraction to role play or other creative means.  They often do not appear 'classically autistic' as communication skills can be superficially very good and often they become skilled at masking their anxiety in public, but then it comes out strongly in the home.  Often they have difficulty with attending school and other important things such as medical appointments, or even things they want to do such as leisure activities.  These difficulties and behaviours are all caused by anxiety and are very hard for the individuals themselves, and also incredibly challenging for those around the person with PDA too.

 

The support group is now primarily on Facebook (its a private group restricted to PDA parents and carers ONLY) but you can also meet face to face with Leila and other PDA parents from the group at the Newbury SEND Parent Carer Cafe, which runs biweekly on Friday mornings during term-time (see the separate entry for the cafe for more details - Leila runs the cafe and hence is available there to chat to PDA parents). 

Our PDA group on Facebook can be found by searching on Facebook for 'West Berks PDA Support Group' and requesting to join - subject to your answers to the screening questions.  Only parents or carers of PDA youngsters (or suspected PDA) are accepted to join and we need to keep it a safe space where only parents in the same boat are members.  We are fortunate to have many compassionate, kind and supportive members who are willing to help one another through their experiences, difficulties, worries, and advice and the group contains much collective experience and encouragement, so please do connect with us if you are in need of PDA support locally. 

 Leila

 

Contact Name
Leila Cox
Contact Email
leila@westberkspdasupportgroup.co.uk
Links
https://www.facebook.com/.../1065244136948087
SEN Provision Type
Autistic Spectrum Disorder
Local Offer Age Bands
0 to 1
1 to 4
5 to 7
7 to 11
12 to 14
15 to 16
16 to 18
19 plus
Needs Level
High
Medium
Low

General Provider

Is your service accessible? (consider in general terms how you make your service accessible, in addition to any specific premises issues)

Accessible via Facebook.  Please consider joining Facebook just for the group if you're not already a user.  You don't have to use your personal account outside of the group and can control all your privacy settings to manage it on your terms if like me, you're not keen on having social media accounts!

What are the eligibility criteria for your service? (please include any age restrictions, types of need catered for etc)

Open to parents and carers of those with a PDA diagnosis, or pre-diagnosis who suspect their child may have PDA  There are joining questions on the Facebook page that must be honestly answered in order to be accepted to the group.  This is to keep the group as a 'safe' space where parents and carers feel free to discuss sometimes sensitive issues with others in the same situation.

How are referrals/applications made to your service? (include details of who can refer/apply and referral and application process)

Visit the Facebook page and request to join.

What is your service standard for responding to referrals/accessing services? (include timescales for responding to referrals and accessing services)

ASAP but please bear with me as this group is something I do voluntarily around my parenting and other commitments, which sometimes are very demanding!

Details of charges, whether any help is available with costs

Free

Inspection outcomes/quality awards

N/a

Feedback and complaints procedure

N/a

How will I know my child will be safe using this service?

N/a

Quality checks

  • Not applicable

West Berkshire Council do not promote or endorse any of the services listed in this Directory. For more information on this please read our disclaimer.

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