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/

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.

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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 

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 (on the topic of autistic women)

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-