1 Right Planet: Examining the Intersections between Neuro- and Cultural DiversitySteven K. Kapp, Rachel S. Brezis, Nidhi Singhal, Merry Barua, Jacqueline Mathaga, Alexia Rattazzi, Sabine Saade Chebli, Deepali Taneja & Kristen Gillespie-Lynch
2 Introduction Rise of self-advocacy in autism researchAnthropology of autism Rise of self-advocacy in autism research Global voices of self-advocacy
3 Outline of the presentationPresentation from Dr. Steven K. Kapp, autistic self-advocate and post-doc at Exeter university Docu-advocacy project: voices from autistic self-advocates and parents from 4 LAMI countries
4 1. Steven Kapp
5 World autism awareness – What for?Autism criteria, diagnoses, resources have grown rapidly “Epidemic”, validity, utility of autism unclear Euro-American origins, influence: cultural imperialism? Some cultures provide more informal support (in extended family, church etc.), more collectivistic; often more disconnected from Western medical system and it may not be serving them well – e.g. African American mothers with more formal education more likely to say autistic child is having negative impact than counterparts with lower formal education; African American autistic young adults are less likely to identify as having a disability despite feeling less self-efficiacious "Before the white man came, we were blind [to disabilities]. You brought us the gift of sight. I think we were happier when we couldn't see.” Elderly Navajo Singer/medicine man (Connors and Donnellan, 1993, p. 279)
6 Navajo and autism Matrilineal societyNavajo and autism: the beauty of harmony Steven K. Kapp pages Navajo and autism Matrilineal society People with disabilities can stay with mother without stigma Caregiving by multiple “mothers”; natural support and relief Value of harmony (hózhó wellness philosophy) Historically agrarian society: communal, practical to value all Also value individuality; people have unique social roles Accept people with disabilities following ceremonial “cure” Autistic people viewed as children on the brink of adulthood Responsible, celebrated for what can do, accommodated and supported for what cannot
7 Born into the “American dream”Raised by a teacher, the daughter of a pediatrician Grandmother a surrogate “mother” for baby class Normalization of Western medicine in household Work model in father, owner of accounting business Educational and financial (class) privilege White American privilege; third-generation Angeleno - white American privilege - accommodations from dx - privilege in access to services from position in field - first time working full time, independently, abroad/outside L.A. - still adjusting to basic aspects of life like getting transportation, getting food Picture is with Grandma who was surrogate mommy for mommy and me class from 10 mo to 2 years old
8 Privilege of My Autism DiagnosisDiagnosed from, studied at heart of autism’s medical model Diagnosis expanded access to accommodations, services Further privilege in access to services from position in field Autistic advocacy helps me network, helped me get job in UK
9 My Activities Developmental disability policy (employment)Disability policy (volunteer) Autism scholarship Autism activism
10 From the US to the UK First time working full time, independently, outside L.A. Adjustments: transport, food, healthcare, language, climate Struggle with organisation, self-care, health, relationships Yet maintain unusually high access to services
11 2. Docu-advocacy projectVoices of autism from around the world
12 Methods 4 LAMI countries: Argentina, India, Lebanon, KenyaAimed to interview one autistic self-advocate and one parent from each country (no self-advocate from Lebanon) Participants could respond by video, audio, or in writing
13 Interview questions What makes you/your child similar and different from other people you know? What do you think caused you/your child to be different? What is autism? What are good things about having autism? What are problems with having autism? How does autism affect your/your child’s life? How does it affect the lives of people you are close to? How do the people in your community talk about autism? How do people respond to you and your family? When were you/your child diagnosed? How did receiving an autism diagnosis affect how you see yourself/your child, if at all?
14 Interview questions cont.How do you feel about autism now? How do you expect to feel about autism in the future? What treatments/services/supports have helped you cope with autism, and why? Was it difficult to get the supports you have? Why or why not? What supports do you wish you had that you don’t have now? What autism supports does your community need and why? When and how do you tell people about autism? Does telling people about autism change how others treat you/your child? If so, how? What do you think autism research should focus on? What autism advocacy have you participated in? What do you think autism advocacy should focus on? What is neurodiversity? (Define it if they do not know). How do you feel about it? Do you have a message for other autistic people around the world?
15 Voices from Argentina Mario: Autistic self-advocatePaula: Mother of autistic 13-year-old, Antico
16 Voices from India Akash: Autistic self-advocateDrishaan: Autistic self-advocate On sharing: On identity: I tell people about autism when: (1) They are familiar with me. (2) When I want them to understand me and better help me. Telling people about autism changes the way people treat me. Sometimes they help me further and sometimes they reject me. Nothing has caused me to be different, this is what I am and what I will be… I am proud about feeling myself autistic. On advocacy: On neurodiversity: In the society that I live I have distributed blue bulbs and pamphlets about autism to the families living here to make people aware about autism. It refers to the differences in brain thoughts. People should be okay about other people who have thoughts different from them. Those thoughts should be respected. 16
18 Voices from Lebanon: Nidal’s Story“Renoir is my favorite artist, so I relate different aspects of my life to his art. There’s also the black, obviously, symbolizing mourning. I do feel I’m in mourning, only it lasts much longer than a few weeks. There’s also the way one of the girls is trying to communicate with the other while the other girl is not there. This makes me think of my son, when he’s staring into nothingness and I’m trying to get his attention. There’s also the chaos in the background. Our lives have been very chaotic in the last year. Suddenly I forget things, I make mistakes when working, I am late to appointments, to name a few examples of the chaos that has suddenly entered our lives.” Nidal: Autism researcher, professor & mother of autistic 3 year old. Relocating to the US so her son can receive the services he needs.
19 Nidal’s Story “I realized that I wasn’t being overly anxious or suffering from an occupation hazard or medical students’ disease…I realized that my worst nightmare was coming true…As far as it affects my son, autism takes away basic opportunities and rights that mostly everyone else in the world gets to take for granted. There’s nothing that isn’t affected by it…I never used to be negative about autism… but it’s one thing to see it from a distance and a whole other phenomenon when you see it through the single most important person in the world…With respect to my son, there’s nothing good about having autism…I find that I’m resentful that the overwhelming majority of parents have this enjoyment and these dreams – I had dreams for my son too… I don’t think the diagnosis affects how I see my son. It affects how I see the world and the specific context in which my son lives”
20 Nidal’s Story “I trained two former students to work with him – I used to suffer so much during training sessions…I had my students in there and I needed to keep that professional face. I couldn’t show them that I was dying because I was seeing my son doing things I had seen other kids do. Other kids with whom I worked and whom I loved, but seeing those behaviors emerge from my son was so painful, so surreal, like some supernatural force making a joke on me…I think a lot about the way I used to work with autistic kids when I was in New York. I used to be kind to them, I was effective, I did good work. I loved them, was attached to them. Why did this happen that I now see them in my son? I do feel that autism is a big punisher. I know that philosophically speaking, one could say “hey, you loved those kids, so now you see them through your son, and that’s beautiful”. I don’t feel that way… It’s a paradox maybe, but my two truths are that I loved those kids and I don’t want my son to have autism, and those two truths aren’t incompatible…”
21 Nidal’s Story “I now wish the biomedical researchers would just figure out a way to stop it, stop its effects, cure it. I know “cure” is offensive to autistic self-advocates, but I have issues with them being spokespersons to everyone affected by autism. I have issues with the DSM-5 making it all under one label. I don’t believe the high-functioning autistic has a right or the knowledge to speak for families like us who have to teach their child to point, just to point. I don’t see autism as being part of a person’s identity; I see it as something that blocks a person’s ability to function. This doesn’t make sense when referencing high functioning autistic people who are completely independent and able to communicate and live their life to the fullest, but it makes a lot of sense when in reference to those who are far from meeting their full potential and far from living life the way most humans have the luxury to.”
22 Nidal’s Story Lebanon is “so far from what it’s like in the U.S. and Canada and I was hoping to try and change that at a small scale, by starting an (ABA) training program in my department...working with a school or two to develop their inclusivity and special-education resources, and helping to open an intervention center…I would’ve loved to undertake these goals – and even started – so things would be a little better for the autism community in Beirut, but I can’t continue with those now. I have to spend my time and energy on my son, not on developing things that would not be ready in time for him, especially not in Lebanon, one of the most corrupt countries on earth…I want none of these corrupt pseudo-professionals – the credentialed ones and those who are just BA holders who attended an ABA workshop and are now calling themselves ABA therapists – to have anything to do with my son. The clock is ticking because he’s 3 years and 2 months old, and early intervention ends at the age of 5 and we have under 2 years to make a meaningful difference in his life…so we won’t waste more time here.”
23 Voices from Lebanon: Nadine’s Story"All people - all typical kids are the flowers - the beautiful flowers - life's decoration. At the same time you have other people, such as those on the spectrum, and they are symbolized by the light, toward the right side of the photograph. To me, as a parent, this is light for me more so than it is for them - they light up my life. In general, the photograph is beautiful. It opens up a way for you to see the real light that you can see within yourself or within the autistic child - and that happens with the right intervention, ABA, which offers the right path to lead you to a good place. Even the flowers, that are basics in life, they might have thorns. The light, however, doesn't have limitations or borders; it leads you to the sky." Nadine: Mother of 7-year-old autistic daughter, Serena.
24 Nadine’s Story “I cannot give a rigid definition of autism because I only experienced a small side of it through my daughter. It’s a condition that is flexible; a person can get out of it. There’s a paradox here; you cannot deny the autism and at the same time you shouldn’t succumb to it. …It is a difference – it has its advantages and disadvantages, but it’s not a big deal. You should be the one to adapt to this condition, this experience. You decide whether you want to see it positively or negatively. If you take it positively, the results will be so much better. Autism is more difficult than being a typical kid, but even typical kids have various issues and difficulties, some of which appear at an early age and others late on. With autism, you get the difficulties early on.”
25 Nadine’s Story “I feel that Serena benefited from her experiences with the ABA approach…I don’t find many differences between her and her peers…I find there’s a great difference between what I would’ve thought – on my own – to be right or wrong and what ABA taught me. ABA taught me to be consistent and well-organized. If there was no autism, then I wouldn’t have learned these aspects of right and wrong and I wouldn’t have learned to be constructive and positive, so if Serena were a typical child I think my parenting wouldn’t have been as good. Another positive thing is that I am now more open and tolerant to diversity; I appreciate the kinds of difficulties any person with a disability or with some kind of difference might have. Autism helped me determine what is meaningful…The problem in Lebanon is the way people view my child or her differences. Serena is sensitive and people can be harsh here.”
26 Nadine’s Story “Our community needs all sorts of supports. No one is prepared. We just happened to have a new program at AUBMC that includes ABA services and to have you [Nidal] for the research sessions that are teaching Serena. It’s so upsetting that the services are so scarcely available and those available are so expensive. It makes me cry to see other parents who can’t afford services for their children and they just watch them deteriorate…Research should focus on the child’s potential. I don’t know much about the technicalities of research, but I find that there’s a lot of potential that is hidden inside the child. It takes a lot of effort and hard and creative ways to get this potential to materialize in the child’s behavior.”
27 Voices from Kenya Ryan: 22-year-old autistic self-advocateNomi: Mother of 8-year-old autistic son Jaki: Mother of 11-year-old autistic son & president of Kenya Autism Alliance
28 Recurring themes Autism as a different way of being and perceivingVariability and change across individuals and contexts Positive aspects of autism: Sincerity, transparency & focused skills Teaches those who are close Barriers to care: Lack of trained specialists, high cost, & distance Loneliness for parents and autistic people Varied responses from community: From pity/rejection to understanding and encouragement
29 Paradoxes and tensionsTo share or not to share? Mothers in Kenya, Argentina – share profusely; Lebanon- hesitant (autistic college students declined to participate); Self-advocates – mixed/context dependent To cure or not to cure? Does autism open doors, or close them? Education/work opportunities; need to immigrate; new identity and support group Highlight the differences, or focus on similarities? Diversity as part of humanity
30 Discussion Ideas travel fast and wide – but services don’tSimilar views of autism as a way of perceiving the world Similar knowledge of existing therapies although preferred therapies differed (e.g., relationship-based Argentina vs ABA Lebanon & ABA/biomedical Kenya) But great disparities in access to care (professional development, geographic, financial) Stigma and lack of knowledge remain a barrier Research should focus on intervention and societal education and should be informed by people who are directly affected by autism
31 Conclusions and Future DirectionsCulture affects challenges, opportunities – autism itself too? These stories offer insights but are not generalizable We are similar, yet different – should respect diversity Need more collaboration amongst LAMI countries E.g., Argentina – Doing more with less India – How to empower mothers Family networks and support or advocacy groups To counter loneliness, to increase acceptance, to educate More self-advocacy around the world!
32 Map of IMFAR autism collaborations 2008-2013Goldstein et al., 2014
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