WEBINAR CATEGORY: FAMILY PERSPECTIVE

Click on each speaker to find out more...

Duncan Casburn
Eliza Fricker
Jeremy-Bethany's Dad
Liz Soper
Venessa Bobb

Duncan Casburn

Webinar: Fathering Pathological Demand Avoidance - the ups and downs of PDA

As a male, coming to terms with an autism or PDA diagnosis is often a very different process than for females. In this webinar I discuss the process I went through, the challenges I faced and those I still face. Ultimately this is about how I went from denial to becoming a vocal advocate for both autism and PDA, and how I've learned to not only accept my daughter's diagnosis but to embrace it. This is my story, and more importantly, my daughter's story.

Bio

I'm a father to a beautiful autistic and PDA girl. I run a Facebook group called UK Autism Spectrum Parents Support group which now has 30k members, and recognised a lot of the same questions coming up so I decided to start a YouTube channel to answer these questions from the research I've done.

I've since started a Podcast focused on the lighter side of SEND and have also become an Ambassador for Devon Carers 

Who will benefit from your presentation?

Any parent or carer for a PDA child, in particular fathers coming to terms with a diagnosis or pre-diagnosis, teachers and professionals looking for insights into the parents’ perspective

What problems can you solve, please give an example of when someone has applied your advice and had great results.

For men in particular, accepting diagnosis can be a real challenge. We (generally speaking) want to fix everything, and autism can't and doesn't need to be fixed.

Through my YouTube channel and Facebook group I've been able to help many parents in coming to terms with diagnosis, and more so, accept and embrace both autism and PDA.

Learning to work with my daughter, rather than enforce my preferences has led to my greatest success...my amazing daughter!

Are there any other recommendations you could give, or areas you can help with that you may not be discussing?

ABA (in opposition), reframing, Demand reduction, advocacy, carers support, diagnosis, understanding autism, asking autistics, SPD, ADHD, EHCPs, education, schooling

What is your link to PDA?  (Parent, professional)

Both

Who do you work with e.g. Parents, Young people, or professionals? If applicable how do you support them?

Parents come to me for consultations and discussions.

Facebook - https://www.facebook.com/groups/ukaspsg/

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Eliza Fricker

Webinar: Joint talk with Laura Kerbey - Speaking on alternative ways to educate

Our presentation will talk attendees through the positive aspects of home-educating a child with PDA.  We will also cover some of the challenges.  It will provide a “toolkit of strategies” that tutors and parents who are home-educating or whose children have EOTAS can use to ensure that their children enjoy this alternative, and highly successful way of engaging children with PDA to support them with their learning experiences.  We will also look at the impact on families if you home educate your child. 

Bio

Eliza is an illustrator, designer and mother.

Her first book- A Comic Guide to Parenting a Child with PDA is out December 2021, published by Jessica Kingsley Publishers.

She also writes and illustrates a blog “Missing the Mark”, a deeply personal and all too human exploration of a mother’s journey navigating the education system and everyday life with a child who can’t go to school.

Deceptively simple illustrations give way to endearingly perceptive and detailed observations, which are often irreverently humorous and highly emotional.

Missing the Mark is thought provoking and a valuable contribution to the visibility, acceptance and support of families like Eliza’s.

Who will benefit from your presentation? 

Parents who would like to know about other options for educating their children and the benefits of learning at home.

What problems can you solve? Please give an example of when someone has applied your advice and had great results. 

Sometimes children are really struggling to go to school and parents need to feel reassured that there are options to their children’s learning. I give one to one support to parents who are seeking emotional support with this, including the best ways to support their children at home with demand avoidance and high levels of anxiety.

Are there any other recommendations you could give, or areas you can help with that you may not be discussing?

Supporting parents with advice for ways to understand their children and PDA

What is your link to PDA?  (Parent, professional)

Parent

Who do you work with e.g. Parents, Young people, or professionals? If applicable how do you support them?

Parents and professionals offering talk and consultations on PDA and how to support them.

Book Title: The Comic Guide to Parenting a PDA Child (Published Dec 2021)

Personal links

Facebook - https://www.facebook.com/MissingTheMark1/

Twitter - https://twitter.com/_missingthemark?lang=en

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Jeremy - Bethany's Dad

Webinar: The Impact of Bethany's Journey

For anyone who wants to learn how the Mental Health Inpatient System fails people because of its lack of skilled staff and its damaging toxic environments – but also learn how with the right desire The System can provide the right support.

Bio

Parent of an amazing daughter with the superpower of PDA.

She spent 3 years in inpatient care suffering permanent seclusion and segregation, she was restrained and assaulted. Her Human Rights were abused and it took a huge media campaign to get her the support and care she needs.

I am now Co-chair of NHSE’s Quality Improvement Taskforce driving improvements for Children and Young People who are Autistic, have Learning Disabilities or Mental Health needs.

Who will benefit from your presentation?

Parents and Carers of PDA / Autistic loved ones at risk of, or already inside Inpatient settings

What problems can you solve? Please give an example of when someone has applied your advice and had great results.

How using the media can result in a change of care and treatment

Any additional information you would like to add?

My daughter spent 3 years locked in seclusion rooms in secure care – they wanted to put her in High Secure Care in Rampton – instead she got a bespoke setting with her family and her pets, and people who know how to support her.

What is your link to PDA?  (Parent, professional)

Parent and professional

Who do you work with e.g. Parents, Young people, or professionals? If applicable how do you support them?

Parents – I give 1to1 support to parents struggling with PDAers and also to parents with CYP in the MH inpatient system. 

I work as an Expert by Experience in Care Treatment Reviews.  I also work for CQC and the Dept. of Health and Social Care as co-chair of its Advisory Group reporting on Building the Right Support and Transforming Care.

Twitter - @JeremyH09406697

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Liz Soper

Webinar: An Insight into how PDA can intersect with race

  • Different layers and barriers to support /understanding
  • Consultation with different organisations, groups, individuals and forums (including PaCC, L.A, mASCot, Venessa Bobb, Dr Muna Abdi)
  • A mother’s journey to creating safe spaces for other parents
  • Outreach work and on the ground with the community, listening to the community building trusting relationships and connections.
  • Creating safe spaces  to the hidden and unheard, for healing, support and empowerment
  • Creative and wellbeing activities for the community and the children

Bio

Driven by her own lived experience, Liz Soper previously trained counselling first started to advocate for children and families in 2017, leading to her becoming a Brighton and Hove Autism champion and gaining training with the PDA society and P.A.S.T (Positive Autism Support Training). 

Liz has organised talks, taken part as a speaker and has collaborated with many other organisers and support groups including Venessa Bobb, founder of A2nd voice, Lambeth Autism Group and member of the APPG on Autism, and Dr Muna Abdi from Decolonising Education.  Liz has consulted for Can Can Campaigns on their NEU proposal on the impact of poverty, class structural racism on education, and for Brighton and Hove's Parent Carer Council around neuro-developmental pathways and BME communities. 

Through listening to the experiences within various communities, of special educational needs and hidden disabilities and wellbeing, Liz began to champion the voices of those who are unfairly discriminated against by structures within society. This insight led to the creation of A Seat At The Table (ASATT), which Liz founded in 2020, to fundamentally give a voice to the hidden and unheard, creating safe spaces for empowerment and education and not just for parents of children with SEND.  

Via ASATT, Liz works with individuals, groups and organisations, building trusting relationships, developing networks, promoting antiracist and inclusive approaches and encouraging positive identity and heritage in black and brown people and illuminating factors related to the significance of intersectionality.  

The ethos for ASATT is community, creativity and connection, which is conveyed via the many groups and community activities convened by Liz, as she continues to source funding to fuel the growth and development of this necessary work.

Do you work directly with parents and professions? How do you support them?

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What problems can you solve, please give an example of when someone has applied your advice and had great results

Liz has been amazing with her support, I have a child with a PDA profile and she guided me how to make things work better between me and my child. In supporting her and being a mum who is of Indian origin she made me understand how to make things easier for myself and my child with whom I have found an alternative path and can work best for our family life.

Liz supports mums to realise their potential and her guidance and support is extremely valuable to me and other mum's who have availed a Seat at the table over the last few months.

Thanks Liz this has changed my life.

Are there any other recommendations you could give, or areas you can help with that you may not be discussing?

Yes , but we are culturally and trauma informed . We operate from a “we” space and believe people not interventions change lives and in the power of community and collective healing

Any offers you would live to offer and promote 

We have a community conversation in the pipeline for Fathers and boys with guest Connor PDA 

Personal links

Website address - https://aseatatthetable.org.uk/

Twitter - https://twitter.com/ASeatAtTheTabl4

https://twitter.com/liz_soperliz

 

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Venessa Bobb

Webinar: Tackling culture and those difficult conversations

Don’t accept the label, I was told, what do they know? If they never had no understanding. Be your own detective and don’t give up!

Bio

Venessa Bobb mother of 3 - ages 20, 18 and 15, the two youngest diagnosed with Autism, ADHD and Severe Expressive Receptive Language. With the youngest having Benign Rolandic Epilepsy. Her oldest daughter was diagnosed with Moderate Language Difficulties and has a 3 year old son. A2ndvoice CIC a non-for-profit organisation running various projects focusing on Autism and other related conditions.

What is your link to PDA?  (Parent, professional)

Parent

Who do you work with e.g. Parents, Young people, or professionals? If applicable how do you support them?

I work directly with the parents and professionals, running a range of online and face to face support (COVID19 restrictions apply). Tackling the difficult conversations around abuse, childhood traumas, culture, ethnicity and race and open discussions on what other SEND groups will shun.

Many parents and carers have complained about their child or young person having PDA. Due to lack of specialist provision in this area amongst the local authorities, education system and other sectors, we connect with other national groups in supporting and advising families whose children exhibit the PDA profile.

What problems can you solve, please give an example of when someone has applied your advice and had great results

She doesn't mind me mentioning her as she is a speaker, business consultant, campaigner and autism, ADHD and mental health advocate.

Lauren got my details from the National Autistic Society Website as she was seeking someone from the Black community. We met in October 2020 and she was extremely distressed and told me I was her last resort as local services did not meet her needs. 

She felt the local ASC provisions were missing the cultural perspective and had experienced 2 years of failed services. 

She was diagnosed with autism and ADHD in 2016. Now 29, she talked of her journey as a Black autistic woman sectioned and hospitalised 3 times in one week in July 2020. Her lived experience was thought provoking and an insight to how being late diagnosed and misdiagnosed caused ongoing trauma and led to her being sectioned. I was able to signpost her to a range of other SEND organisations in other boroughs who were able to support her in housing, pastoral care and to connect with other autistic people.  Not to tell too much of her journey as the webinars are available to watch. She has been supporting many ASC youths online and also has an interest in connecting with ASC girls and women and to target black girls and women. 

She is co-chairing the National Autistic Society – Autism and Mental Health Conference March 2021 and speaking at major events since speaking and co-hosting our webinars. 

Being rehoused in a short time and around specialist provision from a cultural perspective has also made a difference because she felt alone as the only woman in an ASC local group and black too.

A2ndvoice focuses on the autistic and other related conditions, and seeks out organisations and individuals that can assist. It’s important to have representation and not lip service which has caused damage to many families across all communities.

Any other recommendations you could give and any other areas you can help with that you may not be discussing

A2ndvoice co-delivered and co-produced with Hannah Otoo (Founder - SEN Parenting) a program with the aims of identifying the underlying issues of ethnicity and cultural differences among hard-to-reach individuals and families from the African, Asian and Ethnic Minority backgrounds. The project also identified reasons behind poor representation and exploration. When looking at any disabilities within our communities the challenges of cultural biased view, stigma and layers of discrimination from within our community and out. More training, more awareness on other hidden disabilities as communities still trying to accept autism and ADHD.

https://spark.adobe.com/page/GIxLucc4VAPoq/

Any offers you would live to offer and promote 

If they use the code #PDASUM2 they will be able to offer 10% on two of our online workshops that will take place in the year.

Personal links

Website address - https://www.a2ndvoice.com

Facebook - https://www.facebook.com/venessa.bobb

LinkedIn - https://www.linkedin.com/in/venessabobb

Instagram - https://www.instagram.com/a2ndvoicecic

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