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Forsíða bókarinnar NeuroTribesNeurotribes – Steve Silberman (2015)

Þessi bók stimplaði sig strax inn sem heildstæð samantekt um sögu einhverfu frá sjónarhorni skynsegin-hreyfingarinnar (Neurodiversity) og mannréttindabaráttu. Steve Silberman er blaðamaður sem fékk mikinn áhuga á einhverfu eftir að hafa fjallað um hana í tímaritsgrein.

Bókin fjallar um einhverfu á jákvæðan hátt sem hluta af fjölbreytileika mannlífsins og beinir sjónum að því hvernig samfélagið bregst við einhverfu fólki. Farið er yfir sögu einhverfurannsókna og skoðað hvernig viðhorf hafa breyst – og þurfa að breytast.

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This New York Times–bestselling book upends conventional thinking about autism and suggests a broader model for acceptance, understanding, and full participation in society for people who think differently.

What is autism? A lifelong disability, or a naturally occurring form of cognitive difference akin to certain forms of genius? In truth, it is all of these things and more—and the future of our society depends on our understanding it. Wired reporter Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it, and finds surprising answers to the crucial question of why the number of diagnoses has soared in recent years.  Going back to the earliest days of autism research, Silberman offers a gripping narrative of Leo Kanner and Hans Asperger, the research pioneers who defined the scope of autism in profoundly different ways; he then goes on to explore the game-changing concept of neurodiversity. NeuroTribes considers the idea that neurological differences such as autism, dyslexia, and ADHD are not errors of nature or products of the toxic modern world, but the result of natural variations in the human genome. This groundbreaking book will reshape our understanding of the history, meaning, function, and implications of neurodiversity in our world.

 

Forsíða bókarinnar Neurodiversity the birth of an ideaNeurodiversity: The Birth of an Idea – Judy Singer (2016)

Þessi bók er endurútgáfa á ritgerð Judy Singer, sem er höfundur hugtaksins Neurodiversity. Ritgerðin er barn síns tíma, sem sést m.a. á orðanotkuninni, þmt Asperger syndrome, high-functioning autism ofl. Judy er frumkvöðull Neurodiversity hreyfingarinnar og ræðir m.a. af innsæi um framtíð einhverfusamfélagsins, spáir því m.a. að einhverft fólk muni takast á um það hvort einhverfa sé góður eiginleiki eða eitthvað sem íþyngir fólki. Fram kemur hjá henni að afnám greiningarheitisins Aspergers hafi verið gegn vilja fólks með þá greiningu, en að eftir á að hyggja hafi það verið til góðs.

Judy hóf að skoða einhverfu frá sjónarhorni móður einhverfrar stúlku. Hún gerði sér líka ljóst að móðir hennar væri einhverf. Loks rann upp fyrir henni að hún væri sjálf á rófinu. Þessi þrjú sjónarhorn eru leiðarstef í verkinu.

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Judy Singer is generally credited with the coinage of the word that became the banner for the last great social movement to emerge from the 20th century. The word itself was just one of many ideas in this work, her 1998 Honours thesis, a pioneering sociological work that mapped out the emergence of a new category of disability that, till then, had no name. And in the process, prefigured a new paradigm within the disability rights movement of the time. The work attempted a panoramic view of this new terrain from within a post-modern, social constructionist, feminist, disability rights perspective. Its chapters encompassed a brief history of autism, self-exploration of Singer’s life in the middle of three generations of women “somewhere on the autistic spectrum” and her research as a participant-observer on InLv, an online community of people on the spectrum. At the same time it offered a critique of what Singer perceived to be a certain tendency towards social-constructionist fundamentalism within the disability movement, which, she argued, limited the potential of the new paradigm.This volume reproduces the original thesis with the addition of a new introduction, which gives the background to the creation of the work and offers some thoughts on the current neurodiversity movement.

 

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Mynd af forsíðu Letters to my weird sistersLetters To My Weird Sisters: On Autism and Feminism – Joanne Limburg (2021)

Joanne Limburg var orðin fullorðin þegar hún komst að því að hún væri einhverf. Greiningin hjálpaði henni að skilja hvers vegna henni hafði svo oft liðið eins og hún væri utangátta og misskilin og vakti hjá henni áhuga til að skoða sögu annarra „undarlegra“ kvenna. Hún hafði oft lesið eða heyrt talað um undarlega menn í fortíðinni sem talið var að hefðu kannski verið á rófinu (líkt og Steve Silberman gerir í NeuroTribes) en saknaði sárlega sambærilegrar umfjöllunar um konur. Hún einsetti sér að finna einhverjar þessara skrýtnu systra sinna á rófinu og gera sögu þeirra skil. Því settist hún (eins og einhverft fólk gerir) á bókasafn og hóf að grúska. Fyrstu hugmyndir hennar um konur sem dæmdar hefðu verið skrýtnar sneru að nunnum, nornum, skáld- og einsetukonum. Hún las einnig um konur sem höfðu verið lokaðar inni á hælum og konur sem voru taldar óhæfar mæður. Loks valdi hún fjórar; rithöfundinn Virginiu Woolf (konu sem braut í bága við samfélagsleg norm á fjölmarga vegu), Adelheid Bloch (unga konu með heilaskaða sem dæmd var gagnslaus á tímum nasismans í Þýskalandi), Frau V (móður eins af drengjunum sem Hans Asperger fjallaði um í sínum skrifum) og Katharinu Kepler (konu sem ákærð var um galdra).

Limburg valdi að skrifa konunum bréf, í ljósi þess að sagan hefur oftast talað um skrýtnar konur en sjaldast við þær. Þegar talað er um fólk, getur mælandinn sett sjálfan sig til hliðar og tekið sér stöðu dómara. Hún notar samtalsformið til að kalla fram speglun og fá sig til að setja sig inn í hugarheim og tíðaranda hvers viðmælanda og draga manneskjurnar nær lesandanum, í stað þess að fjalla um þær eins og vísindaleg viðföng.

Niðurstaðan er einlæg og mannleg umfjöllun þar sem reynt er að kafa dýpra í ákveðin þemu sem einhverft fólk þekkir mætavel; að vera öðruvísi (þau en ekki við), að vera gagnrýnd og rannsökuð á forsendum annarra, að vera dæmd fyrir sérkenni barnanna okkar sem óhæf móðir (mæður eru mun oftar gerðar ábyrgar fyrir örlögum barna sinna en feður, sjá t.d. „ísskápsmæður“ sem var notað um mæður einhverfra barna) og talin hættuleg (göldrótt) fyrir að vera á skjön við fjöldann.

Í fyrsta bréfinu, til Virginiu Woolf, er rýnt bæði í útgefin verk hennar en ekki síður í persónuleg bréf og vísunum í einhverfa drætti velt upp í hvoru tveggja.

Í bréfinu til Adelheid Bloch er fjallað um intersectionality, það að tilheyra fleiri en einum minnihlutahópi, jaðarsetningu og hvernig það hefur áhrif á möguleika fólks í lífinu.

Þriðja bréfið, til Frau V, dregur fram tilhneigingu fræðasamfélagsins til að sjást yfir konur og stúlkur í rannsóknum á einhverfu. Það er einstaklega lýsandi að H. Asperger skuli ekki einu sinni skrásetja nafn Frú V heldur bara tala um hana sem „viðhengi“ við drenginn son sinn. Þrátt fyrir að vera lýst sem kaldri og fjarrænni er líka tekið fram að hún hafi mikinn skilning á syni sínum og góða yfirsýn yfir þarfir hans sem hún lýsti af nákvæmni. Ekkert af þessu dró athygli rannsakandans þó að því að hún gæti mögulega sjálf verið einhverf, sem er ákveðið afrek.

Fjórða bréfið skoðar í raun líka móður og son, en Katharina Kepler var sérkennileg kona sem deildi reynslu fjölmargra einhverfra kvenna af misbeitingu í hjónabandi sem leiddi síðan til þess að hún bjó ein með börn sín, sem eitt og sér þótti skrýtið á hennar tíma. Hún var ákærð fyrir galdra, fangelsuð og dregin fyrir rétt. Þar kom það til kasta sonar hennar, virts stærðfræðings, að verja móður sína og fá dóminn til að skoða sérkenni hennar frá öðru sjónarhorni.

Bókin fléttar saman þræði feminisma, mannréttinda, fötlunarfræða og fleira á upplýsandi hátt og fjallar af miklu innsæi um áskoranir einhverfra kvenna í lífi og samfélagi. Bókin höfðar þó án efa til einhverfra af öllum kynjum. Þó svo fjalllað sé um ævi kvenna allt aftur á miðaldir, er vitnað í rannsóknir og mannréttindabaráttu dagsins í dag, meðal annars baráttu Freyju Haraldsdóttur fyrir rétti til að fóstra börn sem og skrif hennar og fleiri íslenskra fræðikvenna.

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It seemed to me that many of the moments when my autism had caused problems, or at least marked me out as different, were those moments when I had come up against some unspoken law about how a girl or a woman should be, and failed to meet it.

An autism diagnosis in midlife enabled Joanne Limburg to finally make sense of why her emotional expression, social discomfort and presentation had always marked her as an outsider. Eager to discover other women who had been misunderstood in their time, she writes a series of wide-ranging letters to four 'weird sisters' from history, addressing topics including autistic parenting, social isolation, feminism, the movement for disability rights and the appalling punishments that have been meted out over centuries to those deemed to fall short of the norm.

This heartfelt, deeply compassionate and wholly original work humanises women who have so often been dismissed for their differences, and will be celebrated by 'weird sisters' everywhere.

 

Forsíða bókarinnar I overcame my autism and all I got was this lousy anxiety disorderI Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir – Sarah Kurchak

Lífleg ævisöguleg frásögn ungrar konu sem uppgötvaði tengslin milli aðlögunar sinnar að kröfum samfélagsins – masking – og kvíðans og þunglyndisins sem fór að hrjá hana í kjölfarið. Hún rifjar upp meðvitað ferli breytinga sem hún gerði á sjálfri sér til að forðast stríðni og falla betur í hópinn og horfist í augu við að það kostaði hana heilsuna. Sarah fékk einhverfugreiningu fyrst við 27 ára aldur og er bókin því góð heimild fyrir fólk sem fær greiningu á fullorðinsaldri.

Af SCRIBD:

Sarah Kurchak is autistic. She hasn’t let that get in the way of pursuing her dream to become a writer, or to find love, but she has let it get in the way of being in the same room with someone chewing food loudly, and of cleaning her bathroom sink. In I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder, Kurchak examines the Byzantine steps she took to become “an autistic success story,” how the process almost ruined her life and how she is now trying to recover.

Growing up undiagnosed in small-town Ontario in the eighties and nineties, Kurchak realized early that she was somehow different from her peers. She discovered an effective strategy to fend off bullying: she consciously altered nearly everything about herself—from her personality to her body language. She forced herself to wear the denim jeans that felt like being enclosed in a sandpaper iron maiden. Every day, she dragged herself through the door with an elevated pulse and a churning stomach, nearly crumbling under the effort of the performance. By the time she was finally diagnosed with autism at twenty-seven, she struggled with depression and anxiety largely caused by the same strategy she had mastered precisely. She came to wonder, were all those years of intensely pretending to be someone else really worth it?

Tackling everything from autism parenting culture to love, sex, alcohol, obsessions and professional pillow fighting, Kurchak’s enlightening memoir challenges stereotypes and preconceptions about autism and considers what might really make the lives of autistic people healthier, happier and more fulfilling.

 

Forsíða bókarinnar Ten steps to NanetteTen Steps to Nanette: A Memoir Situation – Hannah Gadsby

Hannah Gadsby varð heimsfræg fyrir uppistandssýningu sína Nanette, þar sem hún gerði atlögu að sjálfu forminu – að segja brandara – sem hún hafði áður byggt tilveru sína á. Hún upplifði miklar áskoranir í uppvexti sínum í Tasmaníu í tengslum við það að uppgötva samkynhneigð sína í landi þar sem slíkt var enn bannað með lögum. Hún upplifði sig alltaf utan við samfélagið og ekki eins og fólk er flest, en það var ekki fyrr en löngu síðar sem hún fékk einhverfu- og AHDH greiningu sem setti alla fyrri lífsreynslu í nýtt samhengi. Eftir að hafa notað líf sitt sem innblástur í uppistand og gert miskunnarlaust grín að sjálfri sér og eigin áföllum, sneri hún við blaðinu frá og með Nanette á þann veg að horfast heiðarlega í augu við áföllin og standa með sjálfri sér af heilum hug.

Uppistandið Douglas sem kom á eftir Nanette (bæði eru aðgengileg á Netflix) er skrifað frá sjónarhorni einhverfunnar, þar sem Hannah dregur fram augljós merki eigin einhverfu sem hún hafði ekki áttað sig á fyrr.

Ten steps to Nanette er mjög lýsandi titill á bókinni, en í henni segir Hannah Gadsby ævisögu sína í tíu þáttum, um það hvernig hún fann leiðina að sjálfri sér og þeirri lausn sem Nanette veitti. Eins og hennar er von og vísa er bókin bæði fyndin og afar opinská og heiðarleg.

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“There is nothing stronger than a broken woman who has rebuilt herself,” Hannah Gadsby declared in her show Nanette, a scorching critique of the way society conducts public debates about marginalized communities. When it premiered on Netflix, it left audiences captivated by her blistering honesty and her singular ability to take them from rolling laughter to devastated silence. Ten Steps to Nanette continues Gadsby’s tradition of confounding expectations and norms, properly introducing us to one of the most explosive, formative voices of our time.

Gadsby grew up as the youngest of five children in an isolated town in Tasmania, where homosexuality was illegal until 1997. She perceived her childhood as safe and “normal,” but as she gained an awareness of her burgeoning queerness, the outside world began to undermine the “vulnerably thin veneer” of her existence. After moving to mainland Australia and receiving a degree in art history, Gadsby found herself adrift, working itinerant jobs and enduring years of isolation punctuated by homophobic and sexual violence. At age twenty-seven, without a home or the ability to imagine her own future, she was urged by a friend to enter a stand-up competition. She won, and so began her career in comedy.            

Gadsby became well known for her self-deprecating, autobiographical humor that made her the butt of her own jokes. But in 2015, as Australia debated the legality of same-sex marriage, Gadsby started to question this mode of storytelling, beginning work on a show that would become “the most-talked-about, written-about, shared-about comedy act in years” (The New York Times).          

Harrowing and hilarious, Ten Steps to Nanette traces Gadsby’s growth as a queer person, to her ever-evolving relationship with comedy, and her struggle with late-in-life diagnoses of autism and ADHD, finally arriving at the backbone of Nanette: the renouncement of self-deprecation, the rejection of misogyny, and the moral significance of truth-telling.

 

Forsíða bókarinnar The autistic brainThe Autistic Brain: Helping Different Kinds of Minds Succeed – Temple Grandin og Richard Panek (2013)

Temple Grandin er með þekktari einhverfum einstaklingum í heiminum. Hún hefur gefið út fjölda bóka, sjálf og með öðrum, bæði um einhverfu en ekki síður um sérgrein sína, mannúðlegar aðstæður í nautgriparækt og slátrun.

Temple Grandin er fædd árið 1947 og hefur því upplifað mikið af sögu einhverfu á eigin skinni. Hún lýsir því að hafa verið heppin að upphafleg greining læknis hafi verið að hún hefði hlotið heilaskaða. Það hafi leitt til þess að hún hafi fengið þjálfun í stað þess að vera send á stofnun. Grandin hefur notað sjálfa sig sem dæmi, meðal annars með því að gangast undir rannsóknir og myndgreiningu á heila, í leit að frávikum sem geti skýrt einhverfuna. Meðal þess sem þar kemur fram er óvenjustórt svæði fyrir sjónræna úrvinnslu, en hún hefur einmitt oft lýst því að hún hugsi í myndum.

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Temple Grandin may be the most famous person with autism. Since her birth in 1947, our understanding of it has undergone a great transformation, leading to more hope than ever before that we may finally learn the causes of and treatments for autism.

Weaving her own experience with remarkable new discoveries, Grandin introduces the advances in neuroimaging and genetic research that link brain science to behavior, even sharing her own brain scan to show which anomalies might explain common symptoms. Most excitingly, she argues that raising and educating kids on the autism spectrum must focus on their long-overlooked strengths to foster their unique contributions.

The Autistic Brain brings Grandin’s singular perspective into the heart of the autism revolution.

 

Forsíða bókarinnar CamouflageCamouflage: The Hidden Lives of Autistic Women – Sarah Bargiela +1

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Autism in women and girls is still not widely understood, and is often misrepresented or even overlooked. This graphic novel offers an engaging and accessible insight into the lives and minds of autistic women, using real-life case studies.

The charming illustrations lead readers on a visual journey of how women on the spectrum experience everyday life, from metaphors and masking in social situations, to friendships and relationships and the role of special interests.

Fun, sensitive and informative, this is a fantastic resource for anyone who wishes to understand how gender affects autism, and how to create safer supportive and more accessible environments for women on the spectrum.

 

Forsíða bókarinnar Spectrum WomenSpectrum Women: Walking to the Beat of Autism – Barb Cook +4

Mjög gagnleg bók skrifuð af hópi einhverfra kvenna út frá þeirra reynslu. Henni er skipt í kafla sem hver og einn fjallar um afmarkað efni, eins og sambönd, samskipti, öryggi, foreldrahlutverk, stýrifærni, skynjun, andlega heilsu og fleira. Í lok hvers kafla er innlegg frá sérfræðingum, sem endurspeglar þá áherslu að „lived experience“ (lífsreynsla) kemur fyrst, en álit sérfræðinga á eftir.

Bókin er skemmtileg aflestrar með ævisögulegum blæ og spannar allan tilfinningaskalann. Yfirbragðið er þó jákvætt og valdeflandi, enda höfundarnir upp til hópa baráttukonur í einhverfusamfélaginu.

Spectrum Women er alþjóðlegt samfélag kvenna á rófinu, heimasíða þeirra er www.spectrumwomen.com

Þar kemur fram um hópinn: Spectrum Women is an international collaboration by and for autistic women. Our aim is to create a supportive community for women, girls and identifying females who are uniquely different. Our approach is to bring to our readers books, articles, stories and interviews by women of all ages who have a neurodivergent outlook on life in a positive, inspiring and unique way.

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Barb Cook and 14 other autistic women describe life from a female autistic perspective, and present empowering, helpful and supportive insights from their personal experience for fellow autistic women. Michelle Garnett's comments validate and expand the experiences described from a clinician's perspective, and provide extensive recommendations.

Autistic advocates including Liane Holliday Willey, Anita Lesko, Jeanette Purkis, Artemisia and Samantha Craft offer their personal guidance on significant issues that particularly affect women, as well as those that are more general to autism. Contributors cover issues including growing up, identity, diversity, parenting, independence and self-care amongst many others. With great contributions from exceptional women, this is a truly well-rounded collection of knowledge and sage advice for any woman with autism.

  

Ráðgjöf og sálfræði

 

Forsíða bókarinnar Avoiding anxiety adultsAvoiding Anxiety in Autistic Adults: A Guide for Autistic Wellbeing, Dr. Luke Beardon (2021)

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Are you an autistic adult? Do you love, live or work with an autistic adult? The incredible insights and practical strategies in this audiobook will diminish your stress and anxiety if you are autistic and will help your autistic loved one or colleague live well, flourish and thrive if you can improve and adjust their environment if you aren't.

 

One of the biggest challenges if you are an autistic adult (or suspect you might be) is navigating the situations that to the predominantly neurotypical population might appear completely benign but cause you huge stress, anxiety and worry.

At work, at university, in social situations, in friendships, relationships, in shops, in unfamiliar environments - there are a wealth of things that can make you feel overwhelmed if the world is full of things that you feel nobody else notices but that cause you huge distress.

Dr Luke Beardon has put together an optimistic and upbeat guide that will be essential listening not just for any autistic adult, but for anyone who loves, lives with or works with an autistic person. Emphasising that autism is not behaviour, but at the same time acknowledging that there are risks of increased anxiety specific to autism, this practical audiobook gives clear strategies that the autistic person can adopt to minimise their anxiety and live comfortably in a world full of what may seem to be noise and chaos.

At the same time, Avoiding Anxiety in Autistic Adults gives clear guidelines and mission statements to those who live or work with autistic people that they, too, can implement to accommodate needs that are different to their own, taking a radical new step towards a genuinely inclusive world in which autistic people don't just survive, but in which they thrive.

 

Forsíða bókarinnar Avoiding anxiety childrenAvoiding Anxiety in Autistic Children: A Guide for Autistic Wellbeing – Luke Beardon (2020)

One of the biggest challenges for the parent of any autistic child is how best to support and guide them through the situations in life which might cause them greater stress, anxiety and worry than if they were neurotypical.

Dr Luke Beardon has put together an optimistic, upbeat and readable guide that will be essential reading for any parent to an autistic child, whether they are of preschool age or teenagers. Emphasising that autism is not behaviour, but at the same time acknowledging that there are risks of increased anxiety specific to autism, this practical book gives insight into the nature of the anxiety experienced by autistic people, as well as covering every likely situation in which your child might feel anxious or worried. It will help you to prepare your child for school, to monitor their anxiety around school, and also to be informed about the educational choices available to your child. It will give you support to help make breaktimes less stressful for them and how to help them navigate things like eating at school and out of the house.

Educationally, this book will take you and your child right up to the point of taking exams and leaving school; socially and emotionally it will cover all the challenges from bullying, friendships, relationships, puberty and sex education. It will give suggestions for alternatives in the scenarios that might cause anxiety or confusion in your child; it will also give a full understanding of your child's sensory responses and such behaviours as masking, or echopraxia.

As the parent of an autistic child, you may find their path to adulthood different to the one you had expected to take, but as this book makes clear, autism should be celebrated and affirmed. Avoiding Anxiety in Autistic Children helps you to do just that, with practical strategies that will help happiness, not anxiety, remain the over-riding emotion that colours your child's memories of their early years.