Being on the autism spectrum WE ARE PEOPLE NOT DISORDERS Dr Emma Goodall, Flinders University, University South Australia, ASAN Committee Member, Autism HealthyPossibilities.Net HealthyPossibilities.Net DR EMMA GOODALL 2015 Contents What it is to be labelled and viewed as disordered (as per the DSM-5 & DSM-IV) Being seen as less than other people Classroom & community observations of 'beings trapped by their autism' Autism as minimal potential Framing autistic experiences as valid and real not disordered and the possible outcomes of this Improving the wellbeing of those of us on the autism spectrum Accepting AS support needs and differences without the framework of disorder DR EMMA GOODALL 2015 Being (labelled) disordered Autism Spectrum Disorder (F84.0) Diagnostic Criteria (from DSM 5) Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. And yet. ONeill (2008) reports that Strengths in areas of intelligence greater than those of their peers have been found within the general autistic population However, because we are labelled DISORDERED, even our skills are DISORDERED: Cardoso Martins & Da Silva (2010) suggested that ASD hyperlexics' indifference to language as a meaningful, communicative device may be the key to their exceptionally good and precocious development of word reading ability. DR EMMA GOODALL 2015 Can you tell me what the story was about? Why? You just listened to me read it, you should know what it is about.. Where do I start, there were so many things going on OK, I finished reading and you SAID I could do my maths when I finished. 1 reason adults assume AS students do not see language as meaningful. um Are repetitive movements inherently disordered or highly valued by society? Being (seen as) less than (other) people Diverse Disordered CHARACTERISTICS Sensory input seems unfiltered Can be highly focused and or highly distractible Interacts better with those much older or younger Logical in thought and communication ISSUES Impaired sensory integration Distracts others and distractible Poor social skills and difficulty making and sustaining friendships with peers Literal understanding of language, unable to read between the lines DR EMMA GOODALL 2015 Words matter Concepts matter THE AUTISTIC SPECTRUM VERSUS AUTISTIC SPECTRUM DISORDER. DR EMMA GOODALL 2015 AS AS Diverse Disordered CHARACTERISTICS Able to spot errors in complex architectural plans (a skill that can save lives in Earthquakes) Uses body movements expressively (a skill that is highly prized in actors/dancers/performers) Taste &/or olfactory abilities to distinguish between ingredients (essential for chefs, perfume makers etc) Really knowledgeable in one small area, with skills/info in this area at a much higher level than peers ISSUES Cant see the woods for the trees, too detail focused, cant see the big picture Stims or rocks/flaps/twirls Always complaining about the smell, when there is no smell Huge gaps in knowledge DR EMMA GOODALL 2015 Creates a feeling of being less than The caffeinated autistic writes that the use of a puzzle piece to represent autism shows that people dont really value autistic people as fully human people. We are puzzles and we are missing pieces of ourselves, and we must become neurotypical in order to be respected. 1 Judy Endow writes that Autistics in my generation grew up during an era where not much was known about autism. Some of us grew up in institutions. Many of us learned that it was in our own best interest to hide our differences. This was a time before anyone even knew the label for those differences was autism. 2 A tertiary lecturer says Ive been told Im not allowed to disclose my Aspergers diagnosis at work. DR EMMA GOODALL https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/https://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/ 2 Instead of allowing us to celebrate our potential Instead of hiding who I am, I could be a role model for younger aspies and auties.. (Aspie lecturer) I know my writing isnt very good, why keep telling me. Why cant I just type my work, and why cant I write about World of Warcraft. My teacher says its inappropriate but she doesnt know anything about it (Teenager on the spectrum) I cant focus if Im hungry. I have to be able to snack and eat when I need to. I really get why the kids keep asking if they can eat (Aspie teacher) When I found out there were lots of people out there like me, it changed my life. I realised I wasnt at fault, I really was just different. (Mother with autism) DR EMMA GOODALL 2015 Feeling less than creates serious issues Self-esteem suffers if you constantly feel or are told you are less than or disordered Anxiety and stress increase when around others who have made negative comments about the AS, whether or not they know you are AS Young AS adults can begin a pattern of self-medicating or using alcohol/drugs to appear more social than they are naturally (as can non-AS young adults) Mental health difficulties can be precipitated and/or compounded by low self- esteem, self-medicating, high anxiety and stress levels AS people who feel less valuable than others are more vulnerable to abuse of all kinds DR EMMA GOODALL 2015 Observations of SOME adults (including professionals) Will talk about autistic children and adults in front of them but not to them feralshould be in special schooljust needs better parenting Struggle to accept autistic experience including pain as valid/real he doesnt feel pain, dont worry about it look at my eyes she is always crazy in the summer DR EMMA GOODALL 2015 AS (lack of) potential Non-verbal does not indicate intellectually disabled and/or has nothing to communicate. Being intellectually disabled is not less than. Being verbal is not necessary in order to work or have a family or live happily and well. Being able to COMMUNICATE is. Passions are not just special interests or disordered fixations they are potential career pathways Meltdowns and shutdowns indicate being overwhelmed and requiring time/space to recover DR EMMA GOODALL 2015 Lived experience of the AS I understood everything people were saying about me. All those years of people saying I wouldnt be able to do anything. AS adult who is a social worker Feeling different all my life, like I never fit anywhere. AS adult tertiary student This lack of empathy idea is such rubbish, I feel everything, its so overwhelming I dont know what to do with it. AS adult and parent I just wish I was taught how to make friends at school. I really wanted a friend. AS adult living at home with their parents DR EMMA GOODALL 2015 The validity of difference The validity of difference part B. If an AS child/adult is distressed by a noise you can not hear, this does not mean they are disordered. It means their hearing is more acute than yours. If eye contact is inappropriate in a number of cultures why is a lack of eye contact an autistic problem?! If you want to have all your food touching or mixed together, we will respect that, it does not make you disordered, just as our arranging food on a plate beautifully does not make us ordered! DR EMMA GOODALL 2015 The Autism Spectrum as Difference Sensory differences Social differences Difference of focus/interest If we could fly would we still be disordered? Or was superman on the autism spectrum? DR EMMA GOODALL 2015 Superman and images and of DC Comics Improving AS wellbeing Accepting AS experiences as real and valid is a good starting point Teaching skills needed to live well WHILST allowing us to develop and keep our own strategies is important Having AS adults and their life experiences at the centre of AS information will ensure AS children have real role models for all parts of the spectrum Valuing skills of ALL types Scaffolding potential it is not ok to have NEVER let your AS 18 year old go anywhere by themselves, not even with peers or siblings.. (discussion between parents, most of whom were protecting their AS children by not letting them do anything or go anywhere in case they got hurt) Teaching resilience and mindfulness is cheap and easy to implement stuff does go wrong in life, everything is indeed temporary and AS people can learn and can and do change to be able to manage things they could not before DR EMMA GOODALL 2015 Taking the disorder out of the AS Funding is deficit and/or label based but that does not mean the deficit or label represents a DISORDER. People with a hearing impairment are not said to have disordered hearing or brains ASC is used in the UK, however many self-advocates are not comfortable with the word disorder being replaced by a condition as this still has negative connotations Neurodiversity encompasses not just the AS but also dyslexia, dyspraxia and most likely ADHD Dropping the disorder will fundamentally alter the medical model to focus on specific not general deficits (of speech and/or communication) as well as hint at specific rather than generic differences (such as sensory experiences, social awareness) Dropping the D may even lead to an evaluation of what it means to be affected by clinically significant impairment significant to whom?! And a re-evaluation of the idea that to live on the AS is to be IMPAIRED, to accept that perhaps with time and support many more on the AS could live well DR EMMA GOODALL 2015 We need to give each other the space to grow, to be ourselves, to exercise our diversity. We need to give each other space so that we may both give and receive such beautiful things as ideas, openness, dignity, joy, healing, and inclusion. Max de Pree Dan Bull Rapping about living with autism EMMA GOODALL