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/

The Autism Podcast - Season 1 finale - Chris and James discuss Season 1

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! --

The Autism Podcast - Interview with Joanna Grace (on the topic of the sensory world)

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

The Autism Podcast - Interview with Dr Georgia Pavlopoulou (on the topic of sleep)

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 - Introduction
5:29 - 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 sleep
11:41 - 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 specifically
20:26 - 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 unemployment
25:18 - 28:09 - The links between sensory issues, anxiety, daytime routines and sleeping profiles
28:10 - one size does not fit all, the importance of understanding the individual, using screens/social media before sleep, feelings of self-blame
33:10 - 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 blame
49:35 - 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-blame
51:28 - 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 research
58:28 - 1:02:55 - Does sleep naturally improve over time without intervention/additional support? Brief discussion about melatonin
1:03:44 - 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

The Autism Podcast - Interview with Dr Emily Lovegrove (on the topic of bullying)

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.

------

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 

The Autism Podcast - Episode 6 - Interview with Anna Kennedy OBE!

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 London
7.08 - 30:35 - Patrick, Angelo and setting up her first support group and schools
30:36 - 41:37, 45:27 - 48:31 - Empowering parents
41:38 - 45:27 - Cultural stigma, shame and bullying
48:32 - 58:20 - Autism's got talent
58:21 - 1:00:20, 1:17:41 - autism's got attitude and street dancing
1:00:21 - 1:03:27 - Producing music and Building Bridges
1:05:30 - 1:11:20 - Burnout, building resilience, and breaking away from a strict upbringing
1:11:21 - 1:17:40 - Anna's appearance on Strictly Come Dancing
1:21:15 - 1:23:05 - Giving hope to others and advice to those thinking of helping others
1:23:06 - 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/ 

The Autism Podcast - Episode 5 - Interview with Carly Jones MBE!

In Episode 5, Chris and Kiran talk with Carly Jones MBE, an autistic mother of two autistic girls, autism advocate and campaigner whom, since 2008, has been campaigning for greater acceptance, equality of diagnosis, education and safeguarding of autism women, girls and their families. We talk about her personal story including homelessness and some of the work she does to support the autism community, camouflaging among autistic girls/women (and boys/men), the impact this has upon diagnosis and the need for qualitative approaches to diagnosis, the language and conceptualisations associated with special interests, mental health, and issues associated around the safeguarding of vulnerable autistic women.

Carly has produced a wide range of impactful resources including her free online course, 'Bodies Boundaries Abuse and Reporting It' (linked below), many successful blogs and articles some of which have been published in the national press. Carly also does many national and international events aimed at creating positive impact both in terms of positive social attitudinal change and also steering government policy. She also mentors and personally supports families, works on research advisory panels and much more. All of this led Carly receiving an MBE for all of her work in May last year. 

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:

0 - 2:37 - Intro
2:38 - 8:32 - Carly's story
8:33 - 10:17 - Homelessness and autism
10:18 - 15:35 - Camouflaging among autistic women
15:36 - 26:31 - Challenges with the diagnosis of autistic women including current screening tools
26:32 - 28:43 - Carly's mentoring and support work
28:44 - 36:05 - What do parents of autistic girls need to know, and language and conceptions of special interests (vs obsessions vs experts)
36:06 - 41:22 - Parental mental health
41:23 - 50:40 - Safeguarding
50:41 - 1:00:53 - Advice for autistic people struggling with poor mental health

Carly's website: http://britishautismadvocate.simpl.com/

Carly's twitter: https://twitter.com/CarlyJonesMBE

Carly's film, Epidemic of Knowledge: https://www.reelhouse.org/olley/epidemic-of-knowledge

Carly's YouTube playlist: https://www.youtube.com/channel/UC58oNplP6pFoBS7wuL3bNUg

Carly's free online safeguarding course 'Boundaries , Bodies, Abuse and Reporting it for Autistic Girls' - https://www.openlearning.com/courses/boundaries-bodies-abuse-and-reporting-it-for-autistic-girls- 

The Autism Podcast - Episode 4 - Interview with David Grant!

In Episode 4, Chris speaks with David Grant, the husband of Carrie Grant who featured in episode 2! David is a well known singer, television presenter and vocal coach and also happens to be a father of children with different additional needs including two autistic children. In this episode, David opens up about his own personal experiences during his journey of understanding and acceptance, and describes how his experiences, while challenging, have enriched his life. Chris and David also talk about why fathers can be vulnerable to poor mental health, the stigma of mental health especially among fathers, and what fathers who are struggling with poor mental health can do to support themselves.

Episode timeline:

0 - 2.51 - Intro
2:52 - 5.55 & 15:31 - 16:14, 16:55 - 19:12, 24:40 - 28:35, 44:50 - 46:27 - David's personal story
5.56 - 9:40 - Challenging what we've learned about parenting
9.41 - 13.00 - Embracing the journey
13:01 - 15:30 - Fathers' need for practical solutions
19:13 - 24:39, 46:55 - 51:55 - Fathers' vulnerability to poor mental health
29:20 - 33:44, 51:55 - 1:10:12 - Advice to fathers' struggling with mental health
33:45 - 40:40 - "Not one drop of our self worth should depend on other people's acceptance of us"
40:46 - 44:49 - Labelling, stigma and our 'normal' counts

David's twitter: https://twitter.com/DavidGrantSays

David's website: http://carrieanddavidgrant.co.uk/

The Autism Podcast - Episode 3 - Interview with Emma Dalmayne!

In Episode 3, Chris and James interview Emma Dalmayne! Emma is a well known autism rights campaigner in the UK (and internationally) who campaigns against so-called autistic 'treatments', 'cures’ and mistreatment, in particular MMS (chlorine dioxide bleach being used to 'cure' autism). She is autistic herself having been diagnosed at the age of 37. Her youngest son was diagnosed before her which led to her opening a Facebook support group for autistics and parents/carers. She is the author of "It's an Autism Thing - I'll help you understand" and the CEO of Autistic Inclusive Meets (AIM), a community organisation which enables families with autistic children and autistic individuals to get out into the community and socialise in an accepting inclusive environment with like-minded peers.

Episode timeline:

1:25 - 3:37 - Intro
3:38 - 5:30 - Emma's personal story
5:31 - 8:42 - The lack of support at diagnosis and professional stigma
8:43 - 15:42 - Challenges that autistic people experience today including autism stigma, sensory issues, ABA, schooling, low vs high functioning labels, and some ideas for solutions including homeschooling
15:43 - 22:12 - Fake autism 'cures' and 'treatments' including MMS/CD
22:13 - 30:19, 36:27 - 40:33 - Emma's community work including Autistic Inclusive Meets 
34:39 - 35:32 - Emma's advice to autistic people with poor mental health
35:33 - 41:40 - Changes to society that Emma would ideally like to see
41:40 - 43:41 - Outro

Emma's twitter: https://twitter.com/edalmayne

Emma's book ("It's an Autism Thing - I'll help you understand"): http://www.stasspublications.co.uk/publications/its-an-autism-thing-ill-help-you-understand

Autistic Inclusive Meets website: https://autisticinclusivemeets.com/

Autistic Inclusive Meets Facebook page: https://www.facebook.com/autisticinclusivemeets/

Autism Inclusivity Facebook group: https://www.facebook.com/groups/autisminclusivity/

The Autism Podcast - Episode 2 - Interview with Dr Carrie Grant!

In Episode 2, Chris and Emma interview Dr Carrie Grant! Carrie is perhaps best known for television, music and radio work but also happens to be a tremendous autism advocate and campaigner, and a parent of autistic children too. Carrie tells us her story and her views on the social and cultural issues that intersect with autism stigma and discrimination. She also talks about mental health, SEN and schools, employers and more!

Episode timeline:

0 - 12.37 - Carrie's personal story of her children's diagnoses and journey
12:38 - 19:27 - Carrie's parenting approach
19:28 - 33:29 - Stigma's impact on mental health (including a bit on marital relationships from 29:35 - 31:53)
33:30 - 46:29 - Schools and SEN, their impact and responsibility, child mental health, and the changes required
46:30 - 50:54: Employment stigma and discrimination, and the changes required
50:55 - 1:09:25 - Views on how to create real positive social and cultural change
1:09:26 - 1:20:51 - Carrie's practical advice for autistic people struggling with poor mental health
1:20:52 - 1:23:13 - Outro

Carrie's twitter: https://twitter.com/CarrieGrant1

Carrie's website: http://www.carrieanddavidgrant.co.uk/ 

The Autism Podcast - Episode 1 (An introduction and group interview with the podcast team!)

Episode 1 begins with introducing the show and what are we aiming to achieve with it and providing context about the London Autism Group Charity that is producing the show. We will then hear from the podcast team (Chris, Morgan, James, Kiran and Emma) including a bit about our personal stories with autism and some of our views about attitudes and the stigma towards autism, what needs to change and improve, the importance of mental health, the challenges of epilepsy and more.

Episode timeline:

0 - 17:15 - Introduction to the podcast, its aims, housekeeping points about language, criticism and disclosure, and how you can support the charity
17:16 - 43:40 - Personal introduction by each of the podcast hosts
43:41 - 1:20:39 - Group discussion about autism stigma, its impact on mental health, and thoughts on how to challenge stigma and improve understanding
1:20:40 - 1:33:10 - Conversation about epilepsy, what it is, its impact, and some advice on how to manage this
1.33.11 - 1:36:17 - Outro