Interview with Abby Brooke, an autistic advocate based in Kenya and lead of the ‘Walking Autism’ initiative

In Season 2, Episode 12 of The Autism Podcast, Chris and James interview Abby Brooke, an autistic advocate based in Kenya and lead of the 'Walking Autism' initiative.

During the episode, we hear all about Abby's fascinating journey towards diagnosis and self-acceptance, the aims and importance of her Walking Autism initiative, and some of the key issues and challenges facing the autistic and wider autism community in Kenya, including particular stigma issues and challenges accessing support.

If you are enjoying our podcast and have found it useful to you, please consider leaving us a review on Apple Podcasts or wherever else you get your podcasts as they really help us a lot in expanding our audience.

Links:

Abby's Walking Autism website: www.walkingautism.co.ke

London Autism Group Charity website: londonautismgroupcharity.org

Facebook page: facebook.com/londonautismgroupcharity

London Autism Group: https://www.facebook.com/groups/272747662886046/

Twitter: https://twitter.com/lagcharity

Instagram: https://www.instagram.com/lagcharity

The Autism Podcast - Livestream interview with Jo Grace & Becky Lyddon on sensory processing (with a focus on toileting & eating related sensory issues & coping during Covid-19)

In Episode 11 of Season 2, Chris and James interview sensory specialists Jo Grace and Becky Lyddon (founders of the Sensory Projects and Sensory Spectacle respectively), as part of another recent livestream episode that the London Autism Group Charity have been running to support the wellbeing of the autistic and wider autism community during the Coronavirus / Covid-19 pandemic. 

During the livestream Jo and Becky answered many audience questions which led to an in-depth and fascinating discussion around the sensory world, in particular however on the differences between sensory impairment and sensory difficulties, the connection between toileting issues and sensory processing, including the role of interoception, the connection between eating and sensory processing, and advice on how to cope with sensory issues and boost wellbeing during Covid-19. To watch the full video of this interview, and also all of our other Livestream interviews, please visit Facebook.com/londonautismgroupcharity/videos

If you are enjoying our podcast and have it useful to you, please consider leaving us a review on Apple Podcasts or whereever else you get your podcasts as they really help us a lot in expanding our audience.

Links:

Jo Grace's Sensory Projects website: http://www.thesensoryprojects.co.uk/

Jo's Twitter:https://twitter.com/jo3grace

Becky Lyddon's Sensory Spectacle website: https://www.sensoryspectacle.co.uk/

Becky's Twitter: https://twitter.com/beckylyddon

Sensory Spectacle Twitter: https://twitter.com/SensorySp

Sensory Spectacle Facebook: https://www.facebook.com/sensoryspectacle/

London Autism Group Charity website: londonautismgroupcharity.org

Facebook page: facebook.com/londonautismgroupcharity

London Autism Group: https://www.facebook.com/groups/272747662886046/

Twitter: https://twitter.com/lagcharity

Instagram: https://www.instagram.com/lagcharity

The Autism Podcast - Interview with Joan Pons Laplana on the topic of Neurodiverse Nurses

In Season 2, episode 10, Chris and James interview Joan Pons Laplana, an autistic nurse in the NHS leading a major new initiative called 'Neurodiverse Nurses' which aims to promote the inclusion and acceptance of neurodiverse nurses in the NHS.

In this episode, we speak to Joan, about the initiative and its importance, particularly in relation to leveraging the abilities and strengths of such nurses, his own personal experiences of autism, his struggles with mental health, and his work on the front line in fighting Covid-19.

Joan, who was named Britain's nurse of the year by the British Journal of Nursing is a true autistic hero, and I'm sure you'll enjoy listening to him.

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Links:

Neurodiverse Nurses Twitter: https://twitter.com/ndnursesuk

Neurodiverse Nurses website: ndnursesuk.org

Joan's Twitter: https://twitter.com/RoaringNurse

More information about the initative: https://www.nursingtimes.net/news/workforce/bid-to-launch-new-support-network-for-neurodiverse-nurses-09-03-2020/

London Autism Group Charity website: londonautismgroupcharity.org

London Autism Group Charity public Facebook page: facebook.com/londonautismgroupcharity

London Autism Group Charity twitter: twitter.com/lagcharity

The Autism Podcast - Livestream interview with Tigger Pritchard on the topic of PDA (Pathological Demand Avoidance)

In Season 2, episode 9, Chris and James interview Tigger Pritchard, an expert in Pathological Demand Avoidance, as part of another recent livestream episode that the London Autism Group Charity have been running to support the mental health of the autistic and wider autism community during the Coronavirus / Covid-19 pandemic. 

In this episode, we talk about the work Tigger has been involved with, what PDA means, the importance of understanding what demands are and how avoidance of demands is frequently entirely rationale, reasonable and sensory-based, methods to reduce demands, and how to manage demand reduction and management during Covid-19, and more.

To access and participate in future livestream episodes, in which we talk with experts about mental health and coping during covid-19 among the autistic and wider autism community, please visit our public facebook page which is www.facebook.com/londonautismgroupcharity. There you will also find the video recordings of past episodes which you can also access at our youtube channel.

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Tigger is an Autism & Pathological Demand Avoidance Consultant & trainer at Tiggertraining. He is a champion for the National Autistic Society in Cornwall has been running a vital campaign to engage with local businesses and thereby increase the Autism friendly services in Bodmin Cornwall. https://www.linkedin.com/in/tigger-pr... He also created and runs the Autism Coffee Shop Facebook page for interested people to learn and share information, articles on Autism, PDA and related areas. https://www.facebook.com/Autisminfoma... With over 30 years experience, he is a leading expert in the co-occurring condition Pathological Demand Avoidance and has also worked closely with the PDA Society.

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Links:

Charity website: londonautismgroupcharity.org

Facebook page: facebook.com/londonautismgroupcharity

London Autism Group: https://www.facebook.com/groups/27274...

Twitter: https://twitter.com/lagcharity

Instagram: https://www.instagram.com/lagcharity

The Autism Podcast - Livestream interview with Kieran Rose (The Autistic Advocate) about mental health during the Coronavirus / Covid-19 pandemic

In Season 2, episode 8, Chris and James interview autistic advocate Kieran Rose about the threat to mental health for the autistic and wider autism community during the Coronavirus / Covid-19 pandemic. 

To support the community, the London Autism Group Charity have begun doing a series of livestreams with interviews of autistic people and advocates around the topic of mental health and wellbeing. These are happening weekly at our public Facebook page (facebook.com/londonautismgroupcharity) with full details about what and when livestreams are taking place listed there (as well as our Twitter: @lagcharity)

This podcast episode is the audio from one of these livestreams. We talk about some of the main challenges the community will be experiencing during Covid-19, about how to cope and reduce anxiety, the intersections between these challenges and the wider socio-cultural stigmatising narratives about autism, and the importance of recognising the opportunities for social and cultural learning and change that the current social circumstances provide. We also answered a range of interesting questions from the audience. 

We think it was a really useful discussion and worth uploading as its own standalone podcast episode, so that more people could access it and potentially benefit from the advice and suggestions provided. The video recording is also available from our youtube channel (https://www.youtube.com/watch?v=69IQ4QZ5uj4) which you can find by going to youtube and searching for London Autism Group Charity. We'll be uploading our other livestreams there also.

Please note that the London Autism Group Charity is also looking for volunteers to support us in our work during this difficult period. You don't have to be London or even UK-based, so if you do have time and wish to support us, and are interested in mental health in particular, please get in touch with us via our website (londonautismgroupcharity.org). Thank you.

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Kieran Rose is a writer, international Public Speaker and former educationalist whose blog: www.theautisticadvocate.com has been read by over one million people.
Kieran delivers his own specialist Autism training and consults for multiple different organisations. He is also Founder and Chair of The Autistic Cooperative, an International network and lobbying group for Autistic Professionals; and is Managing Director of the Social enterprise Infinite Autism, which supports Autistic people and families through funded partnership working.
Kieran has recently become an executive board member of SLP Neurodiversity Collective, a US-based non-profit internation network and lobbying organisation of Neurodiverse positive SLTs and OTs.
He was diagnosed Autistic in 2003 and is married with three children; two of whom are diagnosed Autistic.

The Autism Podcast - Livestream interview with Lola Alvarez-Romano about mental health during the Coronavirus / Covid-19 pandemic

In Season 2, episode 7, Chris, James and Lola Alvarez-Romano (a mental health expert and NHS psychotherapist) talk about the threat to mental health for the entire autism community during the Coronavirus / Covid-19 pandemic. 

Clearly, the Coronavirus pandemic represents a public mental health emergency for all of us but in particular for the autism community who are particularly vulnerable. This is mainly due to the situation threatening routines, structures, access to usual external support and services, and access to support from family and the wider community.

Therefore, to support the community, the London Autism Group Charity have begun doing is a series of livestreams with interviews of autistic people and advocates around the topic of mental health and wellbeing. These are happening weekly at our public Facebook page (facebook.com/londonautismgroupcharity) with full details about what and when livestreams are taking place listed there (as well as our Twitter: @lagcharity)

This podcast episode is the audio from one of these livestreams, in which we talk about how the autism community can support their mental health, self-care and boost resilience. We also took some questions from the audience. We think it was a really useful discussion and therefore decided it was worth uploading as its own standalone podcast episode, so that more people could access it and potentially benefit from the advice and suggestions provided. The video recording is also available from our youtube channel (https://www.youtube.com/channel/UC9HnzChJg_9jMaV8NmJuXig) which you can find by going to youtube and searching for London Autism Group Charity. We'll be uploading our other livestreams there also.

Please note that the London Autism Group Charity is also looking for volunteers to support us in our work during this difficult period. You don't have to be London or even UK-based, so if you do have time and wish to support us, and are interested in mental health in particular, please get in touch with us via our website (londonautismgroupcharity.org).

The Autism Podcast - Interview with Callum Brazzo (on the topics of poetry and performance, autistic advocacy, mental health and more)

In Season 2, episode 6 of The Autism Podcast, Chris and James speak with Callum Brazzo, a well-known autistic performance poet based in Lincolnshire, UK. 

We talk about Callum's upbringing and the experiences that led him into poetry and performance, including his struggles with poor mental health and finally get diagnosed in his early 20s. He explains his journey towards coming full circle and becoming a leader in his community through supporting other autistic adults via his Autistic Led support group, his Autistic Lincs newspaper column and more. We also talk about language, social media discourse, his Tedx talks and he also performs two of his poems live for us, Nameless and The Energy Bulb.

Episode Timeline:

0 - 9.05: His schooling and upbringing experiences, experiencing poor mental health, expressing himself through his first songs and poems, publishing his first book, coming through circle through supporting others

9.06 - 16.27: Autistic Led support group, forming a community that he didn't have access to when he was younger, social progress and making impact on the next generation, filling the vacuum of autistic support in Lincolnshire

16.28 - 21.01: His experience of being diagnosed, the overwhelming emotional impact it had upon him, his Tedx talk, performing locally

21.02 - 25.59: Setting up the Autistic Led support group, getting funding, main conversational themes and activities

26.00 - 35.13: The impact that role models have had upon his life, the qualities and values that these role models had which worked for Callum,

35.14 - 39.35: Callum's fascination with words, the way his constructs his poetry

39.36 - 40.47: Performance of Nameless

40.48 - 53.43: learning about language and describing autism identity, autism in the news, looking at socio-cultural context behind people's actions, re-directing people's interests to tap into and realise potential, people are worth fussing about, inspirational porn, the need for a healthy social media discourse

53.44 - 58.26: The Autistic Lincs newspaper column Callum writes for, using the column as another method for giving people a voice, poetry writing as an outlet, Callum's book "Movement: Performance Poetry Written Down", what the The Energy Bulb poem is about

58.27 - 1.00.05: Performance of 'The Energy Bulb'

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Links

Callum's website: http://www.callumbrazzo.com/

His twitter: https://twitter.com/CallumBrazzo

Autistic Led support group: http://www.tonic-health.co.uk/AutisticLed.asp (and https://www.facebook.com/groups/287694928530440/)

Autistic Lincs column in Spalding Today newspaper: https://www.spaldingtoday.co.uk/news/autistic-lincs-the-challenges-we-face-9098067/

Callum's Tedx talk, 'Why we should make mountains out of molehills': https://www.youtube.com/watch?v=oq9vcfOMKHM&t=

Callum's Tedx talk, '10 YEARS OF TED TALKS – AUTISTICS IN CONVERSATION': https://www.youtube.com/watch?v=mJJ4j50ufFI

The Autism Podcast - Interview with Christa Holmans (aka Neurodivergent Rebel) on the topic of neurodiversity

In Season 2, episode 5 of The Autism Podcast, Chris and James speak with Christa Holmans, also known as Neurodivergent Rebel, about all things neurodiversity. In particular, we talk about her own journey into late autism diagnosis, how her mental health interplayed with her journey and the stigma of mental health, what neurodiversity means, why it is so important and the stigma associated with it, how to promote neurodiversity in the workplace and the importance of this, and much more.

Christa is a very well known autistic self-advocate from Texas in the United States and runs the internationally recognized neurodiversity lifestyle blog 'Neurodivergent Rebel' in 2016 as a way to introduce people unfamiliar with the concept of neurodiversity to this new way of seeing neurological difference. Today, she runs a very popular YouTube channel which explores the ideology of neurodiversity and the creative expressions of autistic people. She also actively discusses autism and neurodiversity on her Instagram and Twitter channels She also manages Neurodivergent Consulting, a consulting agency that works with businesses “to create new policies that work to attract and increase tenure of current and future neurodivergent employees”.

Holmans is also known as the pioneer of the #askingautistics hashtag, which is most often accompanied by a short question about common autistic experiences such as self-stimulation, burnout, special interests, alternative communication, and accommodations needed for accessibility. 

Episode timeline:

0 - 7.30 - Christa's autism journey and her late diagnosis, coping mechanisms and working towards correcting the misinformation and misconceptions associated with autism
7.31 - 11.15 - the importance of a positive and non-stigmatising diagnostic process
11.16 - 17.47 - what led to the diagnosis, the role of yoga
17.48 - 22.43 - what helps drive Christa's advocacy of neurodiversity and other work on social media, her personal journey into advocacy post-diagnosis, keeping on top of and engaging in social media discourse
22.44 - 27.15 - where she got the name 'neurodivergent rebel', what it means to her and how it reflects her rejection of pathologising autism, the meaning of neurodiversity and the importance of empowering it
27.16 - 33.00 - the stigma of neurodiversity and autism, and the significant potential negative impact associated with this
33.01 - 33.55 - America being behind the UK and parts of Europe in terms of understanding and valuing neurodiversity
33.56 - 39.31 - how to improve the diagnostic process, US vs UK diagnostic service differences, misdiagnosis or incorrect diagnosis
39.32 - 44:55 - the relationship between Christa's mental health and her late diagnosis, what in her life negatively impacted on her mental health (anxiety in particular), the stigma of mental health and the importance of destigmatising it, 'Texas Tough' and the expectation of being tough in Texas which can stem conversations about mental health
44.56 - 1.01.35 - how to promote neurodiversity in particular in the workplace, employment stigma and discrimination, how to make workplaces more neurodiversity friendly and the importance of this on productivity and mental health
1.01.36 - final thoughts and how to get in touch with Christa

Links:

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

Twitter: https://twitter.com/NeuroRebel

YouTube channel: https://www.youtube.com/channel/UCdaQVw-dxYuZb2GXHL7LSjA

Main website: http://neurodivergentrebel.com

Patreon: https://www.patreon.com/NeurodivergentRebel

Christa's neurodiversity consultancy company: https://neurodivergentconsulting.org/

And also: http://AustinAllianceGroup.com

The Autism Podcast - Interview with Lola Alvarez-Romano (on the topic of psychotherapy and mental health support for parents/carers)

In Season 2, Episode 4 of The Autism Podcast, Chris and James speak with Lola Alvarez-Romano, an experienced child and adolescent psychotherapist who works to support the mental health of families in a special school based in North London. Lola talks about some of the key mental health issues she has observed during her time supporting families with a child with additional needs, the importance of the therapeutic journey and power of acceptance, the importance of supporting the mental health (particularly in school settings), how she protects her own well-being against emotional burnout, and much more.

Timeline:

0 - 13.09: Lola's background, training and how she ended up working in a special school supporting the mental health of families of children attending the school

13.10: The aim of the current school service she provides, main themes of issues that she encounters, the role of culture and stigma, isolation and social networks, the challenges and also positives of parenting a child with additional needs, the potential trauma of diagnosis

26.10: The 'why me?' feeling and the importance of the process and journey, how parental feelings could impact upon the child, the crucial importance of acceptance

29.02: Changing the social narrative towards embracing and accepting disability and diversity

32.35: James' experience of Lola's school-based support, parents being stuck in a negative loop and breaking this loop, the pressure on marriages, father mental health

40.18: The potential negative impact of professionals focusing on mothers over fathers, the importance of father involvement and parental unity

43.38: How Lola protects herself from burnout and boosts her own resilience in the face of often difficult, challenging and emotive conversations. Also her responsibility for safeguarding above all else.

50.56: Lola's belief that mental health services in schools, particularly special schools, should be available more widely and that commissioners & headteachers should try to prioritise services like this if resources allow more than they currently do.

57.30: The importance of thinking about the whole family including siblings whose mental health can also become vulnerable. How to contact Lola

Find out more about the work Lola does and how to contact her from the following links:

Association of child psychotherapists (https://childpsychotherapy.org.uk/member_details/4118)

https://uk.linkedin.com/in/lola-%C3%A1lvarez-romano-583bba6a

https://senmagazine.co.uk/home/articles/senarticles-2/the-unforeseen-journey

The Autism Podcast - Interview with Venessa Bobb (on the topic of BAME autistic communities)

In Season 2, Episode 3 of The Autism Podcast, Chris speaks with Venessa Bobb about the difficulties Black, Asian and Minority ethnic (BAME) autistic people and their families face including stigma and when accessing support.

Venessa is a well-known UK-based autistic campaigner and advocate of autistic people in particular those from Black, Asian and Minority Ethnic Communities. She is the founder of A2ndvoice, a small voluntary group run by parents and carers of autistic children and adults, and Branch Officer of the National Autistic Society (NAS) Lambeth Autism Group (see also https://www.autism.org.uk/get-involved/volunteer/amazing-volunteers/venessa.aspx). She is a member of the Advisory Group All Party Parliamentary Group on Autism (APPGA), an advisor on the National Autistic Society's Diverse Perspectives report, the author of Network Autism's Supporting BAME autistic people and their families article, and supports the organisations Cassandra Centre and GroomSafe.  

You can contact Venessa through her Twitter handle (https://twitter.com/BobbVenessa) and LinkedIn page: https://www.linkedin.com/in/venessabobb/.

Timeline:

0 - 2.02: Introduction

2.03 - 9.01: Venessa's experiences of her autistic son when he was young including people's stigmatising and negative reactions across the community, the diagnostic process

9.02 - 15.19: Accessing support after her son's diagnosis and the lack of BAME representation; judgements and stigma towards her parenting, the increase of stigma in the community when her son's diagnosis was revealed, the importance of others accepting the diagnosis, stigma from professionals including judgements from the GP and social services that the underlying issue was parenting skills, the importance of being transparent and communicating with professionals.

15.20 - 21.08: The limitations of the Autism Act 2009 (until the update in 2019) in particular for autistic children, the statutory services not implementing the Act appropriately, lack of BAME representation, the need for the community to come together to support each-other and to hear stories from the BAME autistic community, the need for BAME autistic representation

21.09 - 24.17: The Black community reacting to incidents but not coming together in unity and finding solutions through appropriate representation from the community, the Cassandra Centre, the importance of looking at family dynamics and looking beyond just autism per se to understand the whole picture, the importance of the BAME community supporting each-other

24.18 - 27.46: How social services can improve the way they are delivering their support to families, lack of joined up thinking across professionals, the importance of cultural competence, trusting services

27.47 - 30.15: The role of the religious community in supporting autistic people and their families, what led Venessa to set up A2ndVoice and the work the organisation focuses upon, her other roles including the NAS Lambeth Autism Support Group

30.16 - 38.29: How we can reduce autism stigma and discrimination across different communities

38.30 - 40.19: Autistic people in the criminal justice system

40.20 - 51.12 Advice to new carers and parents of recently diagnosed autistic children who are experiencing/vulnerable to stigma

Season 2, Episode 2: Interview with Rachel Aanstad (on the topic of older autistic adults)

In Season 2, Episode 2 of The Autism Podcast, Chris and James speak with Rachel Aanstad, an older autistic adult based in the United States who runs the Actually Autistic Podcast. Rachel talks about her personal experiences with diagnosis, the impact autism stigma and the allistic social world has had on her, the complexities in generating reliable research evidence about older autistic adults, social conformity, and the benefits of early diagnosis and self-acceptance. She also talks about what led to her developing her podcast, the podcast's main long-term goals, and ends with providing advice for older adults who are also discovering that they may be autistic.

Timeline:

0 - 1.58: Introduction
1.59 - 5.28: Rachel's own experience with the self-realisation that she may autistic
5.29 - 9.36: Autism stigma impacting on conversations about self-exploration
9.37 - 22.16: The mortality gap with older autistic adults, some of the risk factors associated with this (e.g. discrimination, poverty, social exclusion, loneliness), the need for more research evidence in particular reliable statistics and some of the challenges associated with researching this
22.17 - 33.26: Differences in outcomes exist, how the sensory world impacts upon wellbeing, the need and preference for aloneness, and Rachel's hyperphantasia
33.27 - 37.59: Social conformity, the pressure to comply, bullying, cultural differences towards the need to comply
38.00 - 42.18: The benefits of early diagnosis, self-diagnosis and self-acceptance for older autistic adults
42.19 - 50.47: What led to her podcast, what the podcast is about and the hope for long-term impact
50.48 - 54.37: Advice for older autistic people who are currently on the journey of self-exploration

Season 2, Episode 1: Interview with Joseph Redford (on the topic of autistic advocacy and campaigning)

In Season 2, Episode 1 of The Autism Podcast, Chris and James speak with Joseph Redford, an autistic adult, campaigner, advocate involved in a range of autistic-led organisations. He talks about his personal experiences and challenges during school and education, finding a sense of belonging and identity with the autism community, and all of the various work he undertakes with the autistic-led organisations he is involved with. He also opens up about his mental health including what has helped and also challenged his mental health, organising autistic pride events, and more!

Timeline:

0 - 3:28 - Introduction
3:29 - 15:55 - Joseph's experiences at school including social rejection and bullying, the importance of exploring one's identity and the role school could have with this, and autism stigma more broadly
15:56 - 24:41 - Autscape, conferences, and the importance of autistic-led boards, how to get involved in Autscape and its board
24:42 - 36:57 - Labour Party Autism / Neurodiversity Manifesto, employment discrimination, the crucial importance of social policy, the need for a cultural change and autism stigma
36:58 - 42:50 Autistic pride events, recommendations on how people can get involved or arrange an autistic pride event
42:51 - 1:00:51 - Westminster autism commission, demonstrations and the Mendip House protest organised by Autistic Inclusive Meets, Assessment and Treatment Units (ATUs), Mental Health Inpatient units and discriminatory and harmful sectioning, the negative portrayal of autism in the media, the Oliver McGowan case, antidepressants and side effects, mental health and its links with traumatic experiences 
1:00:52 - 1:06.51 - What has helped and hindered Joseph's mental health, and the impact of Joseph's work.

To contact Joseph, please email him at obergine@gmail.com or find him on Facebook (https://www.facebook.com/joseph.m.redford). Joseph also has a Twitter account (@jmtredford) but is not on regularly.

Links to the organisations referred to in the episode are listed below:

Autscape - http://www.autscape.org/
labour party autism/neurodiversity manifesto- https://neurodiversitymanifesto.com/2018/09/18/labour-party-autism-neurodiversity-manifesto-final-draft-version-2018/

Westminster Autism Commission - https://westminsterautismcommission.wordpress.com/

The Autism Empire (who produce the customised autism alert cards) - https://www.autisticempire.com

Autistic cooperative - https://www.facebook.com/TheAutisticCooperative/

Stripped of Human Rights - https://bringingustogether.org.uk/stripped-of-human-rights/