PDA Support Group for parents and carers (West Berks)
Last updated: 10/12/2021
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 primarily on Facebook and can be found by searching on Facebook for 'West Berks PDA Support Group'. Only parents or carers of PDA youngsters (or suspected PDA) are accepted to join. We are fortunate to have an established group of many friendly, 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.
We occasionally meet in person also (covid permitting), details are posted on the Facebook page.
I also have a website westberkspdasupportgroup.co.uk for further info but if you want to connect with me/us 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!
Leila
Who to contact
- Contact Name
- Leila
- Contact Position
- Founder of West Berks PDA support Group
-
leila@westberkspdasupportgroup.co.uk
- Website
- PDA Support Group for parents and carers (West Berks)
- https://www.facebook.com/groups/1065244136948087
Where to go
- Name
- See Facebook Page
Time / Date Details
- When is it on
- See Facebook Page
Other Details
Costs
- Table of costs
-
Table of costs Amount Cost 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!
- Related links
-
https://www.facebook.com/groups/1065244136948087
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 primarily on Facebook and can be found by searching on Facebook for 'West Berks PDA Support Group'. Only parents or carers of PDA youngsters (or suspected PDA) are accepted to join. We are fortunate to have an established group of many friendly, 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.
We occasionally meet in person also (covid permitting), details are posted on the Facebook page.
I also have a website westberkspdasupportgroup.co.uk for further info but if you want to connect with me/us 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!
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
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!
Open to parents and carers of those with a PDA diagnosis or with suspected PDA only. 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.
Visit the Facebook page and request to join.
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!
Free
N/a
N/a
N/a
Quality checks
- Not applicable
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