Yesterday I attended the Nottingham Café Scientifique talk “Thinking about Neurodevelopmental conditions in adulthood” given by Dr Jo Jones, Psychologist based at the NHS Nottingham City Asperger Service aka NCAS. I live tweeted the event and then later developed these tweets into a more detailed report using the free service Storify.
As NCAS is the service where I was diagnosed and where I’ve been seeing various specialists for over a year (although not Jo), and as the talk was very interesting and very much within the ‘autistic spectrum and its overlaps’ remit of this site. I thought I’d share the summary I made here. It’s easily as long and taken as much work as a typical blog post.
If you have any trouble reading this, try the version hosted over at Storify.
Nottingham Cafe Sci "Thinking about Neurodevelopmental conditions in adulthood"
My live tweets from the 2013-10-07 Nottingham Café Scientifique talk "Thinking about Neurodevelopmental conditions in adulthood" given by Dr Jo Jones, Psychologist based at the NHS Nottingham City Asperger Service.
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The official event page is here: http://www.meetup.com/nottingham-culture-cafe-sci/events/130167822/
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Cafe Sci: “Thinking about Neurodevelopmental conditions in adulthood”
Monday, Oct 7, 2013, 8:00 PM
Antenna
Beck Street75 Members Attending
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Clik here to view.CHANGE OF VENUE – ANTENNA, BECK STREET, NG1 1EQ
Dr Jo JonesConsultant Psychiatrist in the Nottingham City Asperger Service
From Leo Kanner in the 1940’s onwards the definitions and understanding of neurodevelopmental conditions has grown. Our speaker, a consultant psychiatrist in Notts Healthcare NHS Trust, will draw on her experiences with adul…
Cafe Sci: “Thinking about Neurodevelopmental conditions in adulthood” -
Café Scientifique, it’s an idea/format adopted by many local groups – to give accessible science/rationalist talks for the price of a cup of coffee: http://www.cafescientifique.org/
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Nottingham City Asperger Service is a multidisciplinary holistic specialist NHS service for adults on the autistic spectrum, and without an intellectual/learning disability, in the Nottingham city area: http://www.nottinghamshirehealthcare.nhs.uk/our-services/local-services/specialist-services/neurodevelopmental-services/adult-neurodevelopmental-services/nottingham-city-asperger-service/Note; I am currently under the care of NCAS and have been seeing various specialists there since June 2012. However I had not met Jo Jones before this event.
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Disclaimer: I did my best to accurately summarise everything that was said during Jo’s talk and the subsequent Q&A, but I will have to some degree focused on what was interesting to me, summarised things in unintentionally misleading ways, misunderstood the intentions, missed things out or accidentally applied my own editorial slant.I’ve done my best to add notes to clarify things I think are incomplete or misleading in my live tweets, but any notes on the Storify are added from memory. several hours after the talk so even more prone to inaccuracy.Apologies to anyone who feels that I’ve misrepresented them, I’m happy to make amendments.
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I’ve arrived at the talk 15 minutes early. Now failing to mingle with anyone. They have the poster to Rainman on the projector as 1st slide
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Full title is ‘Thinking about neurodevelopmental conditions in adulthood’. Starting in the next few minutes. #CafeSci
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The talk started abruptly five minutes late so and I was struggling to hear at first, so my live tweeting of the introduction is a little sparse.Jo said that the first few slides were put together by a colleague for another talk and showed media representations of autism. They included Claire Danes as Temple Grandin from the HBO biopic next to the real Temple Grandin etc.
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Slide of the film Being There, Newton, Einstein and Temple Grandin. #CafeSci
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Newton and Einstein included as people who are often talked about as likely being on the autistic spectrum.
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Jo’s introduction was encouraging people to keep an open mind about the autistic spectrum and not be confused if the current definitions or descriptions contradict the ones that they’d been taught as solid fact in the past:
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Beware ‘Reification’. It may not actually exist as a real thing as described; descriptions are tools, best understandings. #CafeSci
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Labels are based on scientific classifications, come from criteria to qualify for studies/trials. #CafeSci
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Effectively that introduction was to tell us that what we might already know is probably wrong, misleading or incomplete.
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Now giving an overview of Kanner, Asperger, Wing and Gould, Newsome. Is it a set of boxes or a spectrum. #CafeSci
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Kanner coined childhood autism in the 40s, very much the type that came with severe communication impairments and/or intellectual disability. Asperger recognised his syndrome at roughly the same time but it wasn’t translated into English until the 1980s. Wing and Gould worked with both groups/labels of people decades later and realised they were fundamentally the same in many ways.
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‘Set of boxes’ question meaning is autism separated into distinct/different/discrete diagnostic labels rather than a big smeary overlapping spectrum. Jo argued for a spectrum (as the DSM-5 now agrees).
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Interesting mention that Asperger’s 1940s study subjects were mostly from middle class families. #CafeSci
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…and mostly boys. [Context and upbringing affects how traits are likely to present. What coping strategies work/are encouraged.]She also mentioned that all Asperger’s subjects were clumsy.
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New talking about Newsome’s Pathological Demand Avoidance which was locally diagnosed a lot in Nottingham. #CafeSci
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(Due to a connection with the area).
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Interesting as a clinician to ‘inherit’ PDA labelled kids as they move into adulthood. #CafeSci
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Jo felt that this discrete/separate label can be useful in childhood but hasn’t found it useful in adulthood and has preferred to view this as part of the autistic spectrum. Didn’t find this ‘set of boxes’ idea helpful in practice, favours the spectrum view.
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Jo explaining Lorna Wing’s aloof, passive and active but odd classifications. This is all very familiar but very well explained. #CafeSci
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After reading both Kanner and Asperger’s (translated) work Wing and Gould first coined ideas like the autistic spectrum and the triad of impairments; ways of talking about the diversity within the autistic population. These three rough groupings – ‘aloof’, ‘passive’ and ‘active but odd’ were another way to explain how people with the same diagnosis could present very differently from each other.
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Saying all three of those might show up in the same person at different times. #CafeSci
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Next she talked about how different neurodevelopmental conditions (SpLDs, dyslexia, ADHD etc) have large degrees of overlap and any one with one of these conditions may show a great deal of the traits of the others.There was also some brief discussion of some theories of what might cause autism, such as theory of mind – this isn’t exclusive to autism and many people on the spectrum have it – and weak central coherence – this appears to varying degrees within the spectrum.
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Different specialists tend to give people different diagnostic labels that all overlap: Semantic pragmatic, dyspraxia, ADHD, NVLD. #CafeSci
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In adult world, especially psychiatry, there’s very little overlap in specialists or awareness of these overlaps and spectrum. #CafeSci
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All these things may well coexist in one person, all caused by the person having different ‘biological wiring’. #CafeSci
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Also mentioned how they can make personality development problems and mental health problems more likely, but people treating these often aren’t aware of the overlaps, only ‘treat the symptoms’.
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Now talking about setting up Nottingham City Asperger Service – meaning autistic spectrum condition without a learning disability. #CafeSci
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As in their use of ‘Asperger’ isn’t meaning the restricted DSM-IV label (no speech delay etc) but any adult autistic spectrum condition without a learning disability (the Learning Disabilities department has a separate budget and specialists for people with both).[NB, the UK term ‘learning disability’ is what Americans would call an ‘intellectual disability’. Meanwhile what Americans call ‘learning disabilities’, we’d call ‘specific learning differences’ (e.g. dyslexia, dyspraxia etc)].
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Jo stresses that this all comes from her experience of working with hundreds of people on this spectrum. #CafeSci
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And so this talk is very much a clinician’s view, not a theoretical or research led perspective.
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Talking about the triad of impairments and how these become more complex and subtle when the person is more intellectually able. #CafeSci
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As in, coping strategies make it harder to simplify individual real life challenges into just one of ‘social and emotional’, ‘language and communication’ or ‘flexibility of thought’, as useful as this model was.
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No a list. It will show up a lot more when the person is stressed. You might not even notice problems if they’re not stressed. #CafeSci
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Should read ‘Not a list’, as in not a simple check list of ‘symptoms’. The coping strategies might mask things until the person’s stressed, or away from the structure, people and expectations/demands they’re used to.
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You have to get to know them as a person. Recognise sensory differences, overlap with other conditions, especially ADHD. #CafeSci
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[I’ve been told by someone else at NCAS that they’ve observed a roughly 40% overlap between ADHD and their autistic spectrum service users.]
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Now have a joint ADHD/ASD clinic, work out which is one treat first. Already known about in kids and education. #CafeSci
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*work out which is the most appropriate one to treat first
These types of overlaps are already well known outside of the adult services context – by those who work with kids. Adult specialists lag behind due to the ‘silos’ these labels in – an educational psychologist may only diagnose specific learning differences or ADHD, an occupational therapist may only diagnose dyspraxia or sensory processing difficulties, a clinical psychologist might diagnose resultant anxiety, depression or personality profiles, etc not the pervasive neurodevelopmental conditions behind them.
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Think of everyone as like a diamond with all those neurodiverse facets, work out which of the facets is the dominant one to treat. #CafeSci
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I think Jo said this metaphor had come from a past speaker at the group, may have been from DANDA talking on neurodiversity.
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Dimensionality, moving away from the triad view. Sees people who are very able but have a mix of extreme strengths and challenges. #CafeSci
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Example(s) of an able neuroatypical person given was someone very analytical who does well in life but has, say, face blindness, sensory differences, picky eating, difficulties with background noise and low tolerance to pain. What to do if you see this person as a psychiatrist for other reasons, recognise they’re neurodevelopmentally atypical but perhaps not ‘diagnosable’ as any one thing, or not struggling enough to need to be labelled. Is labelling always a benefit?
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Problems of labelling. Is labelling disabling? How far are people taking on labels as identity and letting it define them. #CafeSci
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Being a spectrum means that people are very different from others, should they ‘take on the differences’ of others. #CafeSci
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She also talked about how self understanding can be extremely important to some unlabelled people and how being on the autistic spectrum can lead to life long feelings of unexplained difference. But it’s important for labels to be used as tools that help people, not as limitations.
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Talking about how women with Borderline diagnoses are often actually AS, ADHD or a bit of both. #CafeSci
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Necker Cube on screen, talking about how different labels are specialists looking at the same person from different perspectives. #CafeSci
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…and how both perspectives need to be seen at once to be able to treat the person effectively.Those last few points were rushed as the talk had gone well over the 20 minute limit.
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Introduction now over. Break until questions start at 5 past. That agreed with my understanding of developmental neuro divergence Image may be NSFW.
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At this point hats were sent round for us to put £5 waged or £2 or £3 as appropriate unwaged donations for the Cafe Sci event costs, and to optionally take large laminated numbers (markers) for people to register that they wanted to be put on the list to ask questions in the next part. I think this number system is a fantastic idea for people like me who have hypotonic arm muscles (poor muscle tone) and can’t hold their hands up comfortably for very long.
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Questions and answers now. First one is about savants. Jo talking about how this is an extension of the ‘wiring diagram’. #CafeSci
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When someone has an extreme variance in abilities having some incredible strengths isn’t so surprising. #CafeSci
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(Although having savant-level strengths isn’t the norm).
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Now some jokey questions and answers about how academia is perfect for ND/ASD people, which is a joke with a lot of truth to it. #CafeSci
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The standard jokey line here was given about Oxbridge being perfect for Asperger’s, also not totally serious suggestions that everything discussed described psychiatrists and psychologists. Jo then said that while they were joking here, there is however a lot of truth that the structure of academia and their traditional focus on intelligence and merit over what’s valued in other types of careers (team work and social skills?) can be very helpful for some people on the autistic spectrum.
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Now Declan Murphy’s brain scans work and how it’s very interesting but a bit of a simplification. Need the right definition first. #CafeSci
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As in that you can scan someone’s brain and get a unique dramatic brain scan, but what is actually going on with that person? Is it autism being seen or a specific learning difference that overlaps it? Something else?
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With Dimensionality you worry more about understanding each individual rather than the group. #CafeSci
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Again, that’s the view of the clinician working with individuals rather than the researcher studying groups.
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Now talking about genetic vs environmental factors. All sorts of things can present the same. Look at the individual, consider both #CafeSci
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All ‘sorts of things’ here were foetal alcohol exposure, childhood emotional abuse and neglect, and several other things listed that I now can’t remember. Important to always take a history and see the individual, consider this part of the dimensionality, treat the autistic traits but with awareness of the rest, switch if it makes sense to do so. Sometimes the cause doesn’t matter in practice.
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Audience member making a plea for adult ADHD services. Jo says this is on the agenda. And how there’s a joint service now. #CafeSci
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Lots of overlap with ADHD, lots of things like diction and personality problems in adult ADHD just as in autism. Holistic services. #CafeSci
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(NCAS is also a holistic multidisciplinary service).The audience member made the point that official figures for autism say 1% of the UK population [I’d argue this study is actually very flawed and it’s almost certainly more like 2.5% or more] while the figures for adult ADHD are over 8%. Yet (in Nottingham at least) it’s easy to get access to a specialist service for autism, while there’s nothing for adult ADHD (unless you’re also on the spectrum).
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Staggering the effect that medication can have on some ADHD/ASD adults. Not Jo’s instincts but she’s been persuaded by this. #CafeSci
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(The slash indicates someone either with ADHD alone or with both ADHD and autistic spectrum labels).
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Square peg / round hole, should society change? Jo: society needs reasonable adjustments but also says society miss out by excluding#CafeSci
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This question was asking how much the people being discussed are fine as they are but being forced to fit into an unaccommodating society.Jo had a pragmatic view; that some people are very seriously impaired by their autistic traits. That accommodations do and should need to be made, but we also have the concept of ‘reasonable adjustments’. That society can only ‘bend so far’ when people are being intolerably rude or unpleasant (the example given).But all that said, many people on the autistic spectrum have a lot to offer society if accommodations can be made, and so we miss out by excluding them.
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Someone in the audience arguing against having a spectrum because severe people miss out. Jo: there’s a different budget for that. #CafeSci
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If someone is what we’d now call ‘severely’ autistic – and this need for that language has come about because the spectrum model has expanded definitions – they’d been seen by a different specialist service with a separate budget. So in Nottingham at least, adults without learning disabilities or severe communication impairments aren’t taking help or budget from those who have these intense care needs.
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Jo explains the huge diversity, how people have struggles that cause major difficulties that can be helped by gaining understanding #CafeSci
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Taking about how people can become self supporting once they have the language and understanding. Huge possible benefit. #CafeSci
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Talking about how demands outstretch budgets there will need to be some need to ration services by need. DSM-5 allows for this. #CafeSci
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She then stressed that people who superficially seem to be ‘normal’ and you might not know were autistic in casual interactions can be very severely impacted by social difficulties, organisational impairments, rigid thinking, sensory difficulties etc.She then talked about the great benefit to some people on the spectrum of gaining a diagnostic label, an understanding of how this affects them and a set of strategies of how to work around challenges and with strengths. How she’s seen people who were struggling in all aspects of life become self supporting once they have this, meaning there’s a huge possible benefit to diagnosis and treatment.Finally she talked about how the service is very small, demand is growing and budgets are not. How pragmatically there is some need to draw lines somewhere. How the amount of time people can spend with a service must be limited to some degree. Also how she might limit things when it came to people who are coping with life but want a diagnosis just for reasons of identity rather than for practical help with challenges from traits.She also mentioned how although the DSM-5 criteria for ASD now allows for a wide range of people all under the same label, there is also some concept of support levels included to allow for ‘severity’.
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Question about whether the spectrum is a linear scale. Jo says very much not, it’s a dimensional thing. #CafeSci
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[That question was from a mathematician, I believe Jo mentioned something like unfixed (undefined?) variables and descriptive groupings, but I wasn’t familiar enough with the terminology to summarise this without being able to butt in and ask clarifying questions].
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Question about how labels are needed just for funding/services, where does a spectrum come in? Jo says not usually the only factor #CafeSci
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This question was more like ‘are there ever cases where a child is basically fine but they’re diagnosed only to gain access to SEN status, funding, services etc?’ – She felt this wouldn’t usually be the case.She mentioned that with adults with associated impairments like severe executive dysfunction it is often vital to have a label to give to Atos/DWP to access benefits, but this person is also in great need of help from the service too.
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Jo now talking about how kids can adapt and gain coping strategies at which point labels can become optional tools when needed. #CafeSci
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This comment was in reference to how occasionally someone comes back in adulthood having gained these services and wishes to be ‘undiagnosed’ for some pragmatic reason. Jo wouldn’t wish to reexamine childhood and wouldn’t want to take away a possibly useful label that may become relevant again should circumstances change (coping strategies can be fragile). So in this case she might suggest that the retroactive reasoning/excuse they could give to others was that the label was given to access services, even if it might not strictly fit now.
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Question about if labelling people ‘Atypical’ or disabled, are we encouraging them to change to be normal rather than themselves? #CafeSci
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Really over complex question, didn’t get it all. Jo now talking about how aspies came up with neurotypical in reaction to this. #CafeSci
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Talking about what the individual wants, people who have always felt different & give them what they need to understand themselves #CafeSci
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Jo felt that in some cases people really need a label to make sense of why they struggle and why they’ve always felt different, Labels can be for sense making, identity and self esteem.In other cases people might want to focus on their strengths, overcoming challenges and not want to identify with the label and what they can’t do.
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How the diamond idea is a more positive metaphor, something precious and detailed. Not about deficits. Taking about a profile. #CafeSci
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Meaning this can be a more positive metaphor/idea for those people who don’t want to be given a ‘negative’ label that (to them / society) means they’re deficient.She also said that some people on the spectrum may prefer a computer/electronics metaphor of being ‘wired differently’ instead.
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Another question about genetics. Jo sceptical that it’s ever going to be as simple as a single genome. Fragile X is compelling. #CafeSci
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As in no single genome for autism but the Fragile X hypothesis has explained other types of people with intellectual disabilities that she’s worked with in the past.
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The fragile X studies didn’t lead to new drugs buy explained why old drugs worked! #CafeSci
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*but explained why old drugs that had been found to be useful by a process of trial and error worked (because they affect the genetic factors).
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Women with Asperger’s. Jo says women are interesting. Many misdiagnosed as BPD due to acting our distress at bring different. #CafeSci
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*being different
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Need a trusted other or act out more. Some are however very Asperger stereotype. Lots of variation. Baron Cohen was misguided. #CafeSci
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[This was quite a long and complicated question and answer which I’ve simplified a lot as I’d put my hand up for a question within this and they moved on to gender identity very quickly.]SBC’s ‘Extreme Male Brain’ idea was seen as ‘missing complexity’.Jo said she hasn’t fully worked out her feelings on how BPD overlaps with the autistic spectrum and I don’t feel confident to summarise what she said in more detail, but she stressed later in conversation how she meant that you shouldn’t treat someone without being aware of all the overlapping factors and how they interact and mask or affect each other.
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Questioner asking about the gender spectrum and queerness. Asking if there’s overlap between gender identity and Asperger’s. #CafeSci
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Complex question, can’t summarise. Jo says help people be who they are. 10 percent of people at one gender clinic have Asperger’s. #CafeSci
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Asks why this is. Social? Find a group with a strong identity like veganism, animal rights. Could also be a biological basis. #CafeSci
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Biological factors Jo hadn’t researched in depth and what she mentioned ironically focused on Baron Cohen’s research that strongly relies on the flawed extreme male brain ideas. [I plan to do a future blog post summarising and critiquing various theories and research about this link].The social factors she mentioned seemed to be based on the idea that people who on the spectrum without knowing that they are (undiagnosed) may feel socially lost, need structure and identity and so look for groups with a very strong group identity around a single compelling idea. Examples were animal rights and veganism.Again, she didn’t think that the causes were actually relevant, but that it’s important to treat people with respect, help them to be who they are.
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Don’t pathologise and impose your own normality on people if they’re queer, trans*, have unconventional opinions. #CafeSci
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[‘queer’ and ‘trans*’ are my summary words, not Jo’s wording].
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I just made a rambly comment about how much this reflects the neurodiversity DANDA was recognising years ago, how positive it is. #CafeSci
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My attempt to restate this from memory:Six or seven years ago I was involved in DANDA, the Developmental Adult Neuro-Diversity Association. That grew out of the Dyspraxia Foundation Adult Support Group when they realised that none of their dyspraxic members were just dyspraxic but all had at least traits of all these other neurodevelopmental conditions and most had dual diagnoses of dyspraxia with something else, such as dyslexia, ADHD, Asperger’s.They ended up coming up with this non-pathological, non-medical model of what they all had in common. They had a huge Venn diagram of the traits of all these conditions and in the middle were the shared traits everyone had, the challenges that they all had in common. So they organised around this sameness, while making a big deal about how they were also all very different and had many strengths. They called this developmental Neuro-Diversity or neurodivergence.
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At the DANDA the conferences I went to in 2007 and ’08, most of the speakers were talking about how none of the specialists or adult services recognised these overlaps or that people with one label would have lots of traits from the other labels. So it’s extremely encouraging to hear you [Jo] talking about the same ideas and how you’re putting them into practice with your service users. How you’re recognising the diversity and the overlaps and trying to look at the whole person and not just the labels.
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Jo really pleased that she’s catching up with where the neurodiversity community was years ago. Talks about working with the DWP. #CafeSci
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How DWP looks at all of these related conditions as ‘hidden impairments’. Gradually catching up and learning. #CafeSci
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She said DWP Job Centre training involved her from the Asperger service, someone from Adult ADHD and (I think) someone talking about dyslexia and dyspraxia. How they’re treating training of this as awareness of ‘hidden impairments’ and that they overlap and present in many ways.
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I’m now three questions behind because of listening to the answer to my question… #CafeSci
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What would Einstein say? Help people and recognise their struggles but recognise and encourage their strengths. #CafeSci
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How she struggles to keep up with many of her patients because they’re so far ahead of her, works with them to find common language #CafeSci
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And I’ve forgotten the other two questions. Sorry! It’s over now, engage mingling mode!
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I didn’t manage to mingle at all, failed to talk to everyone I tried to approach except for Jo who’d explicitly invited me to – this is very typical for me. Luckily in the earlier break two different people approached and talked to me, one about my live tweeting having seen it on Twitter Image may be NSFW.
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Had an over enthusiastic conversation w/Jo about neurodiversity, how accepted it is by professionals. Labels needed for research. #CafeSci
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*conversation with Jo
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Context important to decide when you need a diagnostic label and when you need a personal complex multifaceted individual view. #CafeSci
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To summarise: This was about how professionals are still very gradually learning. Adult specialists lag behind those dealing with kids.Also how it’s important to look at context; when you’re doing research you’ll need a fixed label with a restrictive definition. When you’re dealing with an individual person you need to see the whole person, their history, life circumstances, coping mechanisms and all the traits they have, including ones that aren’t strictly autism but relate to things that overlap with the autistic spectrum.
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Then talked about how she and I have a very similar visual spacial memory and so talk and think about ideas in similar ways Image may be NSFW.
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(We both gesture around a lot in ways that are only meaningful to us, and need to have a mental model of things before we can label them – leads to a lot of imprecision about the details like wordings and names because they don’t ‘fit’ into visual spacial memory, means it’s harder to remember things we don’t understand, but we tend to have a very complex multi-dimensional understanding of the meaning, once we understand it).
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She restressed how different diagnostic labels are separated by different types of professionals, everyone has an incomplete view. #CafeSci
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Need to break out of these silos so the full picture’s recognised & the whole person is treated not just 1 symptom or way of coping #CafeSci
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I think she felt this hadn’t been explained well because she had to rush through the final slides, but I said that it had made perfect sense to me.She immediately said – “Ah because you’ve experienced this yourself!” And so I went into a brief life history of first having a diagnosis that said ‘Dyspraxia’ at the top then described NLD and autism below. Also various other details I’ve already blogged about elsewhere.
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@mentalmyrtle She was saying PDA or BPD would be facets within a neuroatypical person’s diamond. Need to recognise all of their facets
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@mentalmyrtle These are pervasive things that affect everything, can’t just treat one, whichever one you start with need to consider others
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[Trying to clarify something that had been summarised in a misleading way previously]
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Thanks everyone who’s complimented my #CafeSci tweets. I’m sure I’ve missed, poorly summarised or editorialised loads but I did my best Image may be NSFW.
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I had three great conversations with people there (one was the speaker) and really enjoyed the talk and the Q&A afterwards. Great format Image may be NSFW.
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There was a really massive turn out there, filled the large cafebar. Apparently they had to move to that paid venue due to so much interest
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Again, sorry if you were at the event and feel I’ve misunderstood or misrepresented anything. Please poke me on Twitter or at http://graphicexplanations.info/ and I’ll happily make revisions or add clarifications.Hopefully people can see from the above tweets and descriptions why I am very happy to be under the care of Nottingham City Asperger Service! They take a pragmatic view, but it’s ultimately based in neurodiversity and nuance.