Topics
Anxiety Autism Burnout Demand Avoidance EHCPs Low Demand Parenting Mental Health Neurodiversity SEN School Screens Trauma
A podcast where clinical psychologists ask (and answer) questions. Naomi presents with Danielle (Dani) Drinkwater - a Clinical Psychologist, tutor, and author of the Mind the Couch blog.
Nabeelah got in touch with us because she was concerned. She has an autistic 6-year-old whose autism has been obvious since she was very young and who is minimally speaking. She felt that children like her daughter were invisible. Her family’s priorities are not represented in the conversation about neurodiversity and it’s more than that, she thinks that we are lacking the language that we need to describe important differences between autistic people. The word ‘autism’ is being used to mean too many different things.
In this heart-felt episode, Nabeelah told us about the early signs of difference she saw in her daughter and how little support there is available. She looked for early intervention, only to be told by a speech and language therapist that she herself was the early intervention. She sought help in online groups, only to be told she was ableist for wanting to help her daughter stop using nappies. She told us of her daughter’s difficulties - pica, toileting, elopement - and how she doesn’t see organisations or researchers prioritising the needs of families like hers. She told us of how difficult it is even to describe her daughter’s challenges, because all of the language has been problematised. She told us of her love for her daughter and how joyful life with her could be.
Nabeelah isn’t denying the reality of anyone’s struggle – but she’s saying that some people are being missed. There has been a re-centring of the autism discussion, away from the severely disabled, and yet we don’t have the words to describe the problem.
This conversation is a valuable insight into the world of the families of severely autistic children, and a wake-up call for anyone who might have assumed that, at this end of the spectrum, needs are being met and families supported.
Here’s a link to the study Nabeelah mentions which looked at the underrepresentation of those with intellectual disabilities in autism research.
For a discussion of PACT and other similar early intervention approaches briefly touched upon in the episode, start here.
For information about the Cambridge Attention, Learning and Memory centre click here.
Our episode with Amy Lutz, mentioned in this interview - parent of a severely autistic adult child and disability historian.
And finally, here is a link to some research on developing the consensus definition for profound autism.
“I would love if the phrase nature vs nurture disappeared from the planet. I think it’s really held back a lot of progress. It’s nature and nurture. If we think of science as nature and nurture we are going to make progress a lot faster than if we keep dividing it into separate things because that’s just not how the world works.” Robert Wright
Are you confused by the nature vs nurture debate? Are you unsure what it really means to say that ‘autism is genetic’, and why people say that there is ‘missing heritability’ in autism? You wouldn’t be alone. The science of behavioural genetics seem to get more complicated the more closely we look.
That’s why when the National Autistic Society stated that ‘autism is genetic’, we wanted to know more. It just seemed too straightforward to be true and we weren’t sure how the evidence matched up. So we were delighted when we found Bob Wright, a paediatrician whose work speaks to exactly this. Bob could not be better placed to help us to understand, drawing on his knowledge not only of paediatrics and neurodevelopment, but also of genetics and the emerging field of exposomics.
In this episode, we asked Bob whether the National Autistic Society were right to make this statement, what he thinks they might be missing, and why he thinks that the question of the genetics of autism is far from resolved. He uses stories to bring these ideas to life - look out for the yellow flanked chickens!
Bob described himself as an exposomic scientist. Exposomics, in contrast to (but in many way complimentary to) genomics, was first introduced by Christopher Wilde in his seminal paper in 2005. It is the science of the environmental exposures throughout a person’s lifetime and how these relate to health. For Bob, it offers a promising new area of research and knowledge development that could help us both to understand autism better but also perhaps offer hope to families of profoundly autistic children.
Bob has a talent for making complex ideas digestible, using stories that really helped Naomi and I begin to get a handle on this topic. We hope that this conversation will resonate with many of you or at least will start some new conversations!
Find more from Bob on his Substack page, including in The Miseducation of Autism Heritability and On the Origins of a Specious Argument about Autism Part 2: Twins, where you can find more details of the chicken story and more.
When Helen Minnis was tiny, she was affectionately referred to as ‘a nightmare baby’. As an adult, she has a diagnosis of ADHD. She counts herself lucky, because her parents had each other, they had enough money, they had community support - and so they were well enough resourced to look after her. It could have been very different.
All of this is very relevant to what Helen researches now. ‘Double jeopardy’ refers to the interaction between neurodivergence (which Helen defines as those who are at the extreme ends of the normal distribution) and childhood adversity. The combination of temperament and environment, and the complex and bidirectional relationships between the two.
In this far-ranging interview, Helen tells us about her research and why she thinks this is such an important area to study. We talk about the children for whom parenting really makes a difference, and how it frequently goes unacknowledged that every child is different and each parent has a different task.
This interview goes from the research to the personal and practical. Helen’s empathy for parents and children shines through throughout. We hope you enjoy it.
One of Helen’s academic papers on double jeopardy with her colleague Ruchika Gajwani-
Gajwani, R., & Minnis, H. (2023). Double jeopardy: implications of neurodevelopmental conditions and adverse childhood experiences for child health. European child & adolescent psychiatry, 32(1), 1–4.
Robert Plomin is the behavioural geneticist mentioned in the podcast who uses the phrase ‘parents matter but they don’t make a difference’.
Big announcements this week in the UK autism world. The National Autistic Society have declared that they are stating definitively that autism is genetic and that we can all stop looking for answers elsewhere. The question, they say, is resolved.
This statement has been very positively received, with many sharing it and heralding it as a great step forward. But is the science really as cut and dried as this would suggest? One thing is clear, they are not making this announcement because of a scientific breakthrough. There has not been a new development in autism research which has finally resolved the issue of what causes autism. They have based this on a review of 83 different research studies, but the outcomes of these studies are nowhere near as straightforward as the statement suggests.
In this episode, Naomi and Dani ask some questions about what ‘autism is genetic’ really means - and why the NAS are saying it now. What is meant by autism, in this context, and what is meant by ‘genetic’? It’s an area that is rife with misinformation and misunderstandings - does the NAS statement resolve any of that? Where do we go from here?