It’s probably high time to talk about the parent infant experts I have been meeting here in NYC. Here are just some of them:
And there are some people I have yet to photograph: Beatrice Beebe, Clinical Professor of Medical Psychology; Tonia Spence, Senior Director-Early Childhood Services; Dr Susan Chinitz, Consultant, Strong Starts Court Initiative. Apologies that not all have photos yet due to camera shyness or my forgetfulness.
In the next few blogs I hope I can share some of their incredible stories and the learning opportunities these people have given. So far there have been fourteen (fourteen!) meetings with inspirational individuals. It seems improbable that this could have happened, given that before this Fellowship I knew no-one and no-body.
With each conversation, pieces of the puzzle have come together. In my first week I found that my head would hurt with the fast pace of the New Yorker dialogue (think machine gun fire compared to the UK tempo which is relatively steady and with actual pauses). There were many acronyms and terms that were beyond me. I had to keep stopping people and asking in my anxious English voice ‘Sorry the what? Pardon?’ Embarrassingly, some of the questions I had to ask were elementary like ‘What is Federal?’.. (it’s the central government of the US). ‘What is a Senator?’ (a bit like an MP) ‘What is CPP?’ (it’s Child Parent Psychotherapy and used by many with parents and babies).
It has been a joy to speak to people in so many places who all have a similar vision and have worked through the very issues that I have faced personally and professionally. It is impossible to capture the depth of the conversations here but I have begun to notice themes and big questions in UK v US differences to practice. This is fascinating and will form the basis of the Winston Churchill Fellowship report back to the UK. Here are some initial findings:
How to approach getting funding? The projects in the US are so different in that many people set up not-for-profits or charities because of the underdevelopment of the public sector. It is not seen as unusual or brave. The paths for ordinary clinicians networking with commissioners are well trodden and less daunting. There are also massive benefactors everywhere it seems. It is possible to raise millions just by being in the right place at the right time!
There is something else, less tangible but one of the reasons that I chose NYC as a place to visit. It is the source of the ‘can do’ attitude that is needed in these situations. There is no fear as people describe setting up their projects, making the right connections and campaigning for a cause they believe in and this is typical New Yorker spirit. Follow your heart and take risks.
ACE as screening? ACE means 'Adverse Childhood Experiences' scale and comes from a highly influential long term study https://www.cdc.gov/violenceprevention/acestudy/. This used a list of 10 items that have long been established as traumatic (e.g. abuse, neglect, having a parent with mental health problems or substance misuse). It's quite easy to ask a parent to tick how many ACES they have had. While ACE’s are common, it is an accumulation of them that is predictive. Nice and simple. The ACE study demonstrated an association of adverse childhood experiences (ACEs) with health and social problems as an adult. Importantly, it ALSO suggested that maltreatment and household dysfunction in childhood contribute to health problems decades later. These include chronic diseases (e.g. heart disease, cancer). Most of the projects and researchers I have spoken to assume the use of ACE questions. When I ask about reaching the families we really need to reach, they often say that this is a clear identifier.
Early diagnosis in infants? This has been the biggest surprise and something to think about more. The US diagnostic classification system 0-3 is all about catching babies early and the established optimum time for an autistic spectrum diagnosis is aged 12 months..12 months! If we compare this to the UK, our National Autistic Society describes aged 2 as 'early'. The average age of diagnosis in the UK is 4 ½.
My initial response to the early diagnosis issue was to recoil in horror. To label babies aged one?! 'What if you are seeing an attachment related issue???' (e.g. not something ‘wrong’ with the baby at all but wrong with his or her environment) I said. However, Gil Foley, an expert in this area who I believe has contributed to the latest as yet unreleased diagnostic manual was very rational in his explanation. He told to me that a diagnosis from every perspective, health cover included, meant that babies and families get the support they so badly need. Recently as I talked to Susan Chinitz, she explained further that it is possible to ‘lose the diagnosis' with the right support. I tried to explain that in the UK we are wary of labels as it can be hard to 'lose' them – but from what I gather this rigidity in thinking is a British thing.
I would like to say thank you to these people who have blessed me with their time and wisdom in the first few weeks of the Fellowship. Also, thank you to the blog commentators so far- it is amazing to get your feedback. So, what do others think of the themes that are emerging? Does this fit with your experience in the US or UK? There are some contentious issues here, do tell me your opinion!