I recently attended the final day of the three-day Attwood & Garnett Masterclass programme focusing on Autistic Women and Girls as part of a 200 seated delegated conference. This was made up of autistic individuals of all ages (diagnosed, self-diagnosed in the process of self-identification or pursuing a diagnosis), professionals, parents, at the beautiful Senate House in Bloomsbury central London. This building is famous for its links to iconic films such as The Chronicles of Narnia: Voyage of the Dawntreader, Batman Begins: The Dark Knight Rises and in more recent times has played host to several BBC TV series such as Killing Eve, Silent Witness, Bodyguard and an episode of The Antiques Roadshow.
A magnificent building, refined in its outstanding Art Deco architectural characteristics with its matching marble floors and walls that mirror image along each of the wide echoey stairwells and long endless corridors, hallways with wooden doors. The building seemed somewhat clinical at times for its sparseness and blankness with beautiful gilded ornate metal bannisters, and matching rails that seemed to stretch endlessly along each floor and stairwell!
It also took me back in my mind’s eye of learning to swim as a child in the old Art Deco swimming pool back home in Aberdeen Scotland, thus instantly providing me with a sense of comfort and familiarity in an unfamiliar London setting!
Senate House is also connected to the immediate UCL London building (“the place where it all began”, Tony Attwood tells us, where he ‘nervously’ began his first published papers on autism under the guidance of Simon Baron Cohen and Uta Frith).
As the event drew closer I must confess it filled me with much trepidation due to my current health situation of an ongoing back issue and how would I could cope with sitting through a whole day event, even with breaks (which I did thankfully due to comfy chair and plenty of breaks and my tinted glasses to help with sensory issues). I was also hoping it would be a respectful, validating and informative event towards autistic people due to the rather misleading title which didn’t sound all encompassing, because as we know, the autism spectrum consists of not just women and girls but also male, non-binary, trans, gay, lesbian, bisexual, pan, and celibate individuals. Thankfully the presentation did cover all and was very respectful and gentle, covering a total of 144 slides which were electronically delivered to attendees via The Minds & Hearts admin team in Australia, so they could be printed off as handouts prior to the event.
The first part of the day was centred around children, adolescents (both male and female comparison were made), plus highlighting the new screening tool that had recently been devised by Tony and Michelle. This tool moves away from the old misinformed DSM-5 diagnostic criteria and removes stereotypes, changing the rhetoric towards autistic individuals regarding the widely misrepresented idea that autistics lack of empathy and inflexibility, or must be high or low functioning, or everyone is autistic (Attwood & Garnett, 2020). The slides presented showed tables using more positive based language in comparison to the old DSM-5 which was most interesting.
This lead timely into the afternoon slot on women and girls (please note there were slides and discussion which included stats from the Minds & Hearts Clinic around those identifying as non-binary, trans, gay, etc.). Interestingly, 22% women and 8% men were found to report gender non-conforming feelings, while teens and adults also reported more same sex attraction than their neurotypical peers (Attwood & Garnett, 2020).
The rise in diagnosing vs recognising autism within family members was also discussed by Tony and Michelle and is primarily viewed clinically as a ‘co-occurring condition within families’ who have attended the Minds & Hearts clinic. Thus, to summarise, it is an inter-generational phenomena not only amongst males vs males or males vs females, but also females vs females i.e. a daughter gets diagnosed then the mother recognises the characteristics and traits within herself, and then the grandmother makes these familiar connections too, which in turn creates a collective ‘autistic awakening’ (Harris, 2015) ) within the family. This outcome was shown in a short YouTube clip played to the audience entitled Diagnosing Women with ASD Level 1, (ABC, 7.30 Report, 2018). This was filmed in Australia where several generations of women and girls from separate sets of families are interviewed to discuss their familial and personal autistic experiences alongside a short commentary from Dr Michelle Garnett, filmed at The Minds & Hearts clinic.
A subject dear to our hearts as autistics is ‘special interests’ or ‘passions’ which can last decades, or, just a matter of weeks, a few months which Tony discussed at length, sharing examples of quotes from people he has met alongside slides of photos of horses, wild mushrooms and potato mashers. The special interest we are told may appear like other peer interests at surface level, but once you scratch beneath the surface, a lot more hidden complexities unfold. These ‘interests’ or ‘passions’ are seen therefore from a clinical perspective as providing an ‘identity’, comfort blanket which ‘combats anxiety and depression’ in the autistic child, teen, and as we know also in adults. This section of the discussion was concluded with a few valuable words of advice to parents to ‘reward’ rather than ‘punish’ the child or teen by removing their focus of interest (Attwood & Garnett, 2020).
Tony Attwood also discussed the country Denmark as being his ‘ancestral home’ and some of his experiences there, which led the discussion nicely into the brilliant concept of ‘Energy Accounting’ devised by the Danish autism advocate, Maja Toudal, pictured on a slide with links to her YouTube channel, TheAnMish’. The concept of ‘Energy Accounting’ (Toudal, 2017) is likened to having a bank account, but the balance is made up in columns of both unspent and spent ‘energy’ and gets deducted or added from the overall ‘energy’ balance, whilst also spending and saving ‘energy’ simultaneously. Thus, ‘energy deposits’ are ‘made and withdrawn’ to the energy bank via ‘social engagements and ‘replenished’ or ‘reinvested’ again by the special interests or from sufficient periods of isolation to enable the autistic person to ‘re energise’ themselves for the day(s) ahead. This was all perfectly depicted on a slide showing a table of different activities i.e. social event (party, school, university etc.) vs gaming (i.e. dungeons and dragons) alongside a set of numerical figures and diagram of a full battery charged at 100% then diminished to 20% depending on activities required on a daily limit (Attwood & Garnett, 2020; Toudal, 2017).
The afternoon discussion centred around the rise in late diagnosed autistic women covering social experiences around issues of, ‘you don’t look or seem autistic to me’, ‘pretending to be normal’ (Holliday-Willey, 1999) ‘ gender role conflict in conforming to traditional gender roles or sexuality’, ‘feminine identity’, ‘parenthood – regret vs embracing it vs traditional role vs vocation’ and ‘passivity and social naivety’ (Attwood & Garnett, 2020).
We were informed that the oldest female to be diagnosed at the Minds & Hearts clinic is age 75 and the oldest male is 90 (Attwood & Garnett, 2020). This shows that there is not just ‘a lost generation of autistic women’, (Lai & Baron-Cohen, 2015) but also a generation of undiagnosed autistic men, and how they also camouflage and mask as coping mechanisms. They also may have a supportive partner or employer. As they age, they may no longer have the supporting partner through ill health or death, or employer through retirement, and the undiagnosed person has ‘slipped through the net’ due to having support throughout their life, thus now seeking out a reason for why they are no longer managing their life the same as before (Attwood & Garnett, 2020).
We learned about the ‘pathways to diagnosis’ – difficulties in gaining or obtaining employment, through having relationship issues, having an autistic child, a peer/mentor suggests a diagnosis, or from media coverage. The issues within employment were also covered and how autistics have to ‘act normal’ to be accepted, or the benefits that can be brought to the workplace due to being autistic, and the career paths that work for autistics, or those who prefer to opt for self-employment, but little was covered on unemployment (Attwood & Garnett, 2020). Thus, it seems getting an adult diagnosis is deemed ‘powerful and transformative’ (Webster & Garvis, 2017) and autistics can be ‘more assertive in their relationships, opinions and advocacy’ (Bargiela, Steward & Mandy, 2016).
Interestingly, we were informed by Tony Attwood that a recent well known autistic adult diagnosed by the Minds & Hearts team is none other than the wonderful Australian comedienne, Hannah Gadsby, and a forthcoming book is due out which I for one, cannot wait to read!!
A chunk of the afternoon was dedicated by both Tony and Michelle to the work of their recent team colleague Barb Cook with several slides. One was of Barb on Australian TV discussing employment issues, followed by another one entitled ‘Sisterhood of the Autistic Woman’ with links to the closed Facebook group, Spectrum Women Connect, and website run by Barb www.spectrumwomen.com. This lead in beautifully to Michelle holding up a copy of the 2018 book, Spectrum Women: Walking to the Beat of Autism and naming each individual author and their chapter(s) and mentioning her commentary at the end of each of their shared experiences and advice. Michelle conveyed how amazing they are as writers and advocates, how they provide a safe haven online and encouraged us all to join the page Spectrum Women which I am already a member of. There was a slide displaying the Spectrum Women book behind Michelle as she spoke about the chapters covering topics on ‘Growing up’, ‘Identity’, ‘Diversity’, ‘Parenting’, ‘Independence’ and ‘Self Care’. Also, on the slide alongside Barb was photos and links to the website and books, blogs, videos by her dear friend Yenn Purkis, non-binary autistic advocate, formerly known as Jeanette Purkis.
There was a selection of slides of recommended books by diagnosed adult women and a set of short discussions of each person’s history in regards their autism, and their forewarned experiences to the audience members in regards to employment, friendships, relationships, abusive relationships, the risks of online dating, not reading a romantic situation and finding oneself in a dangerous situation. Michelle warned, “even sociopaths appear charming and the idea of a romantic meal alone at his place could warrant disaster”. Plus they highlighted the potential risks of encountering sexual and social predators, and how Tony and Michelle and their team provide group therapy, counselling and advice to young teens and adults, and hope to run a new similar group for women (instead of just ones for younger people).
The books mentioned are as follows:
‘My Autistic Awakening’ by Rachael Lee Harris ( Therapist, Clinician Minds and Hearts Clinic) www.rlharrispsy.com
‘Been There Done That Try This’ by Anita Lesko, Temple Grandin and others.
Debi Brown ‘Aspie guide for being safe with men’
Liane Holliday Willey ‘ Safety Skills for Women’
This was concluded by a wonderful ‘Self Affirming Pledge’ by Liane about self-identity as an autistic woman. “I am not defective, I am different, I will not sacrifice my self-worth for peer acceptance. I am capable of getting along with society, I will ask for help when I need it, I will be patient with those who need time to understand me”.
A table at the back of the conference hall was filled with books by autistic author and advocate Alis Rowe of The Curly Hair Project, which I believe have been endorsed by Tony Attwood, and the books had almost sold out by the time the event ended. I had hoped to see Spectrum Women and other books from the slides for sale but maybe these were on sale at their Oxford event and will be available at following events. I really enjoyed the day and meeting some wonderful professionals, parents, autistics, and making new connections and friends. Also meeting both Tony and Michelle was very cool and they commented very generously on my art too, which had been spotted on social media!
References
ABC, 7.30 Report. (2018). Autism more common in girls than previously thought. Retrieved from https://www.abc.net.au/7.30/autism-more-common-in-girls-than-previously-thought/9694098
Attwood, T., & Garnett, M. (2020). Women & Girls with Autism. Presentation, London, UK.
Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal Of Autism And Developmental Disorders, 46(10), 3281-3294. doi: 10.1007/s10803-016-2872-8
Harris, R. (2015). My Autistic Awakening. Lanham, Maryland USA: Rowman & Littlefield Publishers.
Holliday-Willey, L. (1999). Pretending to be normal (1st ed.). London: Jessica Kingsley Publisers.
Lai, M., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013-1027. doi: 10.1016/s2215-0366(15)00277-1
Toudal, M. (2017). Energy accounting: an interview with Maja Toudal. Retrieved 24 January 2020, from https://vimeo.com/213640278
Webster, A., & Garvis, S. (2017). The importance of critical life moments: An explorative study of successful women with autism spectrum disorder. Autism, 21(6), 670-677. doi: 10.1177/1362361316677719
About Yvonne Moore
Yvonne Moore is a successful Dumfries based, self-employed and self-taught mixed media artist. Moving from her hometown of Aberdeen in Scotland 12 years ago with her husband and 3 sons to rural life around Dumfries was a big change but has been inspiring for her own creativity in experiencing nature and coastal themed influences for her artworks. Also lead to designing stage sets for both school based and theatre Royal plays and designing window displays and community-based mosaics. Creative from an early age Yvonne would win art competitions as a child, teenager and adult and told she had a natural flair for creativity, and instead embarked on a stint with a modelling and music career which was another passion in the creative arts! Yvonne’s love of books and quest for learning about the social world lead to gaining a Honours degree in Sociology and a Masters from Aberdeen University during the 1990’s. It was later embarking on a few art projects and recognition of her talents locally that fuelled a career change into the arts.
Yvonne’s website: https://artyvonne.my-free.website/
Facebook Page: https://www.facebook.com/artyyvonne/
