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Episodes
Tuesday Jan 14, 2020
Tuesday Jan 14, 2020
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 autism7.31 - 11.15 - the importance of a positive and non-stigmatising diagnostic process11.16 - 17.47 - what led to the diagnosis, the role of yoga17.48 - 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 discourse22.44 - 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 it27.16 - 33.00 - the stigma of neurodiversity and autism, and the significant potential negative impact associated with this33.01 - 33.55 - America being behind the UK and parts of Europe in terms of understanding and valuing neurodiversity33.56 - 39.31 - how to improve the diagnostic process, US vs UK diagnostic service differences, misdiagnosis or incorrect diagnosis39.32 - 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 health1.01.36 - 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
Sunday Dec 22, 2019
Sunday Dec 22, 2019
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 school13.10: 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 diagnosis26.10: The 'why me?' feeling and the importance of the process and journey, how parental feelings could impact upon the child, the crucial importance of acceptance29.02: 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 unity43.38: 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-583bba6ahttps://senmagazine.co.uk/home/articles/senarticles-2/the-unforeseen-journey
Friday Nov 15, 2019
Friday Nov 15, 2019
In Season 2, Episode 3 of The Autism Podcast, Chris speaks with Venessa Bobb about the difficulties that various ethnic minority 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 cultural 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 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 different communities 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
Saturday Oct 12, 2019
Saturday Oct 12, 2019
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: Introduction1.59 - 5.28: Rachel's own experience with the self-realisation that she may autistic5.29 - 9.36: Autism stigma impacting on conversations about self-exploration9.37 - 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 this22.17 - 33.26: Differences in outcomes exist, how the sensory world impacts upon wellbeing, the need and preference for aloneness, and Rachel's hyperphantasia33.27 - 37.59: Social conformity, the pressure to comply, bullying, cultural differences towards the need to comply38.00 - 42.18: The benefits of early diagnosis, self-diagnosis and self-acceptance for older autistic adults42.19 - 50.47: What led to her podcast, what the podcast is about and the hope for long-term impact50.48 - 54.37: Advice for older autistic people who are currently on the journey of self-exploration
Friday Sep 06, 2019
Friday Sep 06, 2019
In Season 2, Episode 1 of The Autism Podcast, Chris and James speak with Joseph Michael , 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 - Introduction3:29 - 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 broadly15:56 - 24:41 - Autscape, conferences, and the importance of autistic-led boards, how to get involved in Autscape and its board24:42 - 36:57 - Labour Party Autism / Neurodiversity Manifesto, employment discrimination, the crucial importance of social policy, the need for a cultural change and autism stigma36:58 - 42:50 Autistic pride events, recommendations on how people can get involved or arrange an autistic pride event42:51 - 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.
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/
Monday Jul 15, 2019
Monday Jul 15, 2019
In the final and 10th episode of season 1 of The Autism Podcast, Chris and James reflect upon and discuss Season 1 and the podcast's plans for Season 2. They discuss some of the issues highlighted in each episode to date, including SEN and EHCP issues in schools, the importance of how professionals conduct the diagnosis process and communicate with parents/carers, the impact of social media including the neurodiversity discourse on Twitter and Facebook support groups (including the London Autism Group) as well as community meet-ups, autistic girls and women, bullying, sleeping issues, and the sensory experience. Both also talk about some of their personal experiences including diagnosis and epilepsy.
Thanks to everyone who has listened to Season 1. We hope the podcast has been useful to you and made a positive impact. We will be back with more episodes and interviews in Season 2 which will commence in September/October 2019.
-- If you would like to support the London Autism Group Charity, which produces 'The Autism Podcast', please visit https://www.facebook.com/londonautismgroupcharity/ and consider making a donation (no matter how small). Thank you! --
Monday Jun 10, 2019
Monday Jun 10, 2019
In episode 9 of The Autism Podcast, James speaks with Joanna Grace, the founder of The Sensory Projects, Sensory Engagement & Inclusion Specialist, TEDx speaker, trainer, and author. The Sensory Projects is a national and international project aimed at promoting inclusion through focusing on people whose primary experience of the world, and meaning within it, is sensory.
Joanna also delivers training days nationwide and offers consultancy and resource writing services to organisations looking to improve their inclusive practice. She has published many books and articles regarding her sensory engagement work, she is also one of the editors of the PMLDlink journal www.PMLDlink.org.uk, and a co-author of the 'Supporting people with profound and multiple learning disabilities' book that commissioners use when purchasing education, health and social care services in the UK.
1:55 Introduction: General information on the world of sensory processing 4:58 We discuss the equal validity of different types of communication. 6:00 Communication for people who haven’t acquired language. 7:30 The impact of learning and repetition on the development of the brain. 11:40 An introduction to Sensory Stories. 17:03 What brought Joanna to concentrate on this area of research? 24:23 The aim of the Sensory Story Project 25:40 The Sensory Art Project 32:00 Thinking about the Mental Health of people with Profound and Multiple Learning Difficulties. 32:42 The Sensory Being Project – Sensory mindfulness. 35:35 The Importance of being able to gauge the views of a person who may not be able to communicate them directly. Not to allow carers and support workers to impose their own views on to the people in their care, which could distort the situation. 38:50 What Sorts of people attend the training events that Joanna hosts? 40:05 What are the events like? 42:00 Sharing information 42:58 TED Talk 44:28 Supporting Third World Care Settings around the world.45:23 The importance of the new Core and Essential Standards for supporting people with Profound and Multiple Learning Difficulties. 52:19 How people can help to drive up the standards of care provisions by spreading knowledge of the Core Standards. 53:00 How to contact Joanna 53:53 Conclusion
Saturday Apr 20, 2019
Saturday Apr 20, 2019
In episode 8 of The Autism Podcast, Chris and Kiran speak with Dr Georgia Pavlopoulou, an academic working with sleep experts and the autistic community in order to understand sleeping issues among people, autistic sibling well-being, mental health, participatory research approaches and more. Georgia works at University College London in particular at the LiLAS Laboratory which is a lifespan learning and sleep laboratory run jointly by UCL and the Institute of Education.
The interview focuses upon the challenges that poor sleep pose to autistic people and their families, including the nature of these challenges, their consequences, what increases the risk of poor sleep, and advice on how to approach these issues.
Timeline:
0 - 5:28 - Introduction5:29 - 11:40 - The importance of theory and participatory approaches when designing research studies, and how this helped Georgia initially identify some of the issues related to sleep11:41 - 20:25 - What is 'good' sleep, 'deep sleep', the autistic sleep profile and differences between typically developing people, and improving 'sleep hygiene' among autistic people specifically20:26 - 25:17 - Risk factors of sleep problems including poor mental health, social environments and lifestyle. What are the causal relationships - does poor sleep cause poor mental health or does poor mental health cause poor sleep? Also the consequences of poor sleep including unemployment25:18 - 28:09 - The links between sensory issues, anxiety, daytime routines and sleeping profiles28:10 - one size does not fit all, the importance of understanding the individual, using screens/social media before sleep, feelings of self-blame33:10 - 42:20 - Professionals stigmatising autistic people and perceiving sleeping issues among autistic people as a consequence of behavioural deficit and being rule-breakers. Sleep is a lifespan issue and therefore we need more research on sleep among autistic people across different age groups. This lack of research is in part due to not listening and valuing the autistic voice until now (reinforcing the importance of participatory approaches), as well as the 'deficit narrative' and autism stigma.42:21 - 49.34 - The impact of poor sleep on families and parents/carers, blame towards parents/carers which increases the risk of self-stigma and self blame among parents/carers, removing the blame49:35 - 51:27 - There are many more questions still to explore: do autistic people have different circadian rhythms? how does epilepsy, gender issues, co-existing conditions such as adhd, side effects of medications, other medical problems (such as constipation) all play a role? We need more research! Without the evidence, people are guessing their way forwards which may not work and may result in further anxiety and self-blame51:28 - 55:08 - General, reasonable advice to parents/carers who are struggling with sleeping issues in the families.55:09 - 57:08 - General, reasonable advice to autistic people who are struggling with sleeping issues, 57:09 - 58:27, 1:02:56 - 1:03:44 - How to contact Georgia including how to get involved in her research58:28 - 1:02:55 - Does sleep naturally improve over time without intervention/additional support? Brief discussion about melatonin1:03:44 - 1:08:00 - Some final advice from observations during Georgia's observations including not to fear embracing unusual but safe and reasonable solutions, trust your child and be guided by them as to what to safely try
Georgia's twitter: https://twitter.com/jopavlopoulou
LiLAS lab twitter: https://twitter.com/LILAS_Lab
Georgia's profile page: www.lilaslab.com/georgia-pavlopoulou
For Georgia's latest research papers go to: https://www.ncbi.nlm.nih.gov/pubmed/30802802 and https://network.autism.org.uk/good-practice/evidence-base/autistic-adults-and-sleep-problems
Upcoming sleep event for parents to hear more about the results of our latest work: https://www.eventbrite.co.uk/e/ucl-open-sleep-day-tickets-57617630885
Sample of sleep papers from LiLAS Lab team; The Role of Environmental Factors on Sleep Patterns and School Performance in Adolescents: https://www.researchgate.net/publication/285573305_The_Role_of_Environmental_Factors_on_Sleep_Patterns_and_School_Performance_in_Adolescents
Sunday Mar 03, 2019
Sunday Mar 03, 2019
In episode 7 of The Autism Podcast, Chris and James speak with Dr Emily Lovegrove, a well-known anti-bullying expert, consultant and academic. Dr Lovegrove, who was diagnosed later in life as autistic, talks about her approach and philosophy on the issue of bullying including what constitutes bullying, its impact, why it happens, how to manage it, and how our responses to it are influenced by many factors including wider socio-cultural values. She talks about its links with mental health, stigma, culture and biology in what is a fascinating exploration into one of the most powerful and, unfortunately, prominent issues autistic people and the wider community have to face.
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Timeline:
0 - 2:45 - Introduction
2:45 – 11:15 - Intro into the type of work Emily does including within schools and her broad approach
11:16 - 13:10 - Black and white thinking and encouraging the grey, the impact that society has on everything including bullying
13:11 - 25:20 - Different forms of bullying including mate crime and why autistic people can be so vulnerable to bullying, the importance of teaching autistic children 'no' and self-respect, ABA and the problem of expecting conformity
25:21 – 30:10 - What is bullying?
30:11 – 34:37 - Is the bully a victim also? Do their circumstances have an impact?
34:38 - 36:30 - Do emotional responses to bullying help or impede in managing situations, and how can we manage our emotions?
36:31 - 48:20 - General advice on how to manage bullying including the importance of managing stress, breathing, practicing self compassion and self respect, shifting away from emphasising compliance and being confident to say 'no'
48:21 – 55:40 - The crucial importance of shifting social attitudes towards autism and the importance this could have on mental health, self compassion and bullying
55:41 – 1:01:22 - Final thoughts and how people can contact Emily
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Emily's website: http://thebullyingdoctor.com/
Emily's twitter: https://twitter.com/TheBullyingDr
Emily's book ("Help! I'm being bullied"): https://www.amazon.co.uk/Help-Being-Bullied-Emily-Lovegrove/dp/1905170343
Thursday Feb 14, 2019
Thursday Feb 14, 2019
In Episode 6, Chris talks with Anna Kennedy OBE, one of the most well known autism campaigners particularly in the UK. Anna talks about her extraordinary personal story and life including how she entered the world of autism. She then explains the various work she and her charity, annakennedyonline.com, are involved with including schools and respite centres she set up, The Give Us A Break campaign, Autism's Got Talent, the Autism Hero Awards and AKO Autism Expo, and her thoughts on why and how her charity has been so successful.
If you enjoy the episode please consider supporting us by going to https://www.facebook.com/londonautismgroupcharity/ and using the blue donate button or by setting up a Facebook fundraiser. Or you can paypal us a donation at londonautismgroupcharity@gmail.com. You can also find us on Amazon Smiles and Give As You Live. We are a small and new charity with many big ideas about how to make a positive impact but need your support to help achieve this! Thank you.
Episode timeline:
3:46 - 7:07 - Meeting her husband and moving to London7.08 - 30:35 - Patrick, Angelo and setting up her first support group and schools30:36 - 41:37, 45:27 - 48:31 - Empowering parents41:38 - 45:27 - Cultural stigma, shame and bullying48:32 - 58:20 - Autism's got talent58:21 - 1:00:20, 1:17:41 - autism's got attitude and street dancing1:00:21 - 1:03:27 - Producing music and Building Bridges1:05:30 - 1:11:20 - Burnout, building resilience, and breaking away from a strict upbringing1:11:21 - 1:17:40 - Anna's appearance on Strictly Come Dancing1:21:15 - 1:23:05 - Giving hope to others and advice to those thinking of helping others1:23:06 - 1:30:43 - AKA Autism Expo, Autism Reality Experience, Women's Radio Show and final words of advice
Anna's charity website (which contains links to Autism's Got Talent, AKA Autism Expo and much more): https://www.annakennedyonline.com/
Anna's twitter: https://twitter.com/AnnaKennedy1
Anna's Women's Radio Station show 'All Things Autism': http://womensradiostation.com/members/anna-kennedy-obe/