Embracing Neurodiversity:

1. Embracing Neurodiversity: Advocacy and Allyship Jessica Leza, MA, MT-BC

2. Learning Objectives • Explore the concepts and culture of the neurodiversity movement that can impact a client’s therapeutic needs (CBMT Board Certification Domain I.D.9). • Identify cultural factors of the neurodiversity movement that can impact components of therapy such as rapport, motivation to participate in treatment, and appropriate goals and objectives (CBMT Board Certification Domain I.B.4.d).

3. Overview • What is neurodiversity? Terminology • Values & culture of the neurodiversity movement • Autistic Experiences of Therapy • Implications for clinical practice in MT • Additional resources PowerPoint available at: http://www.JessicaLeza.com

4. What is Neurodiversity? Terminology Neurodiversity (ND)the phenomena of naturally-occurring, neurological diversityTerm originally developed within autism community, coined by Judy Singer Diversity does not only apply to race, sexuality, religion, et. al. Diversity also refers to disability & neurology. Read more: #Neurodiversity “The essence of beauty is unity in variety.”– Felix Mendelssohn

5. What is Neurodiversity? The Neurodiversity Movement • Operates according to the Neurodiversity Paradigm –“the understanding of neurodiversity as a natural form of human diversity, subject to the same societal dynamics as other forms of diversity.”(Nick Walker, in “Throw Away the Master’s Tools”, in Loud Hands) • A disability rights movement, influenced by social model of disability • Fights for support & accommodations for diverse neurologies • Powered by self-advocacy (doesn’t speak for everybody, but stands up for the right for everyone to speak up for themselves) • Encourages a strengths-based perspective • Values the idea that human society needs/benefits from all types of brains. • “The acceptance & celebration of those that operate other than what most of the world considers to be normal.”(Alex Kimmel, “Interview” in Typed Words, Loud Voices) • “It’s OK to be autistic - it’s not wrong for us to be the way we are, and it’s not our goal to become (or learn emulate) NTs.”– Jim Sinclair

6. What is Neurodiversity? Terminology Neurodiversity Movement • Founded in early self-advocacy work by intellectually & developmentally disabled, institutionalized people • Includes the severely disabled • Political issues have included fighting for a $10.10 minimum wage for federal contractors to include disabled people working in sheltered workshops; right for disabled people to live in communities with supports rather than institutions, inclusion in education, access to AAC, preserving the ACA • “But my mind is unstrange, I am not a different species, an alien creature, a changeling, a robot, a freak of nature. I am a familiar word, pronounced with a different accent. I am your mother’s favorite recipe, prepared by a stranger. I am your favorite song, recorded by a new artist. I am a human being; I am Autistic.”- Maxfield (Sparrow Rose) Jones, “My Mind is Unstrange” No You Don’t: Essays from an unstrange mind

7. What is Neurodiversity? Terminology

8. What is Neurodiversity? Terminology: Who is Neurodivergent? Neurodivergent (ND): people w/neurology different from the majority (see also, neurominority)Who is neurodivergent? • Autism (*many paths to diagnosis are widely accepted) • ADHD • Tourette’s Syndrome • Learning disabilities (dyslexia, dyscalculia) • Mood disorders (depression, bipolar), schizophrenia • Anxiety disorders, Obsessive Compulsive Disorder • Personality disorders • Down Syndrome, Angelman Syndrome, Cerebral Palsy, ID • Dementia, Brain Injury

9. What is Neurodiversity? Terminology Neurotypical (NT) • brain functions in ways that conform to “normal” parameters / in socially accepted ways • Members of the dominant neurological majority are NT. • NT means “not-neurodivergent” • NT does not mean “non-autistic” • Term coined by Jim Sinclair Read more:Why Johnny Doesn’t Flap: NT is OK! By Clay & Gail Morton

10. What is Neurodiversity? Terminology Allistic / Allism If you are not autistic, you are allistic. A person can be neurodivergent and allistic (e.g. non-autistic but with another type of neurological difference such as dyslexia, cerebral palsy, OCD, or dementia); OR, a person can be neurotypical and allistic (e.g. neuro functioning conforms to social norms – not autistic, not mentally ill, not brain injured)

11. What is Neurodiversity? Terminology • Cousin (AC): non-autistic neurodivergent; slang originating with Autism Network International (ANI), refers to a non-autistic person with some other significant social and communication abnormalities that make them “autistic-like;” AC refers to “autistics and cousins” • Autist: An autistic person • Aspie: a casual identity label corresponding to an Aspergers Dx • Aspergirl: a girl/woman with Aspergers/Autism • Ableism: an attitude that favors non-disabled people • Pathology Paradigm: based on the medical model of disability; states that there is one acceptable narrow range brain type; falling outside this is considered a pathology • Cross-Neurotype Competence: the ability to interact and communicate skillfully with people of different neurotypes, coined by Nick Walter, read more in “Throw Away the Master’s Tools” in Loud Hands.

12. Values & Culture of the Neurodiversity Movement “… but you are talking about developmental disabilities and mental illness – those are disabilities, not a culture!”Definitions of Culture identified by Ifte Choudhary (Texas A&M University) • the cumulative deposit of knowledge, experience, beliefs, values, attitudes, meanings, hierarchies, religion, notions of time, roles, spatial relations, concepts of the universe, and material objects and possessions • systems of knowledge shared by a group of people • communication, cultivated behavior, and patterns • a way of life of a group of people • symbolic communication, including a group’s skills, knowledge, attitudes, values, and motives

13. Values & Culture of the Neurodiversity Movement • Symbols • Self-Advocacy: “Nothing about us, without us.” • The Social Model of Disability • Visualizing the Spectrum • Functioning Labels • Identity-first language (IFL) • Autistic Pride • Holidays • Moving beyond awareness to acceptance • Realism • Criticism of Neurodiversity • Experiences in Therapy

14. Values & CultureSymbols

15. Values & CultureSymbols

16. Values & CultureSymbols • April 2014, Jimmy Orr releases “We’ll Get By (the autism song)” featuring stigmatizing lyrics (“my autism is a prison”)https://youtu.be/1MbWshaywmU • Autistic organizations & individuals reached out to Orr • Resulting dialogue dehumanized autistics • Autistic self-advocates used humor to cope with the stress • Montana, the Autistic Party Giraffe resulted from attempts to use the situation for self-empowerment of autists • Read more:Giraffe Party http://imapartygiraffe.com/on-the-origins-of-giraffe-party/ • “G is for Giraffe” in The ABCs of Autism Acceptance, by Sparrow Rose Jones

17. Values & CultureSymbols • Red Instead for Autism Acceptance Month • An alternative to stigmatizing Autism Awareness Campaigns from groups like Autism Speaks (“Light it up blue”) • Launched 2015 • Steps away from the gendered symbols (blue) and stereotypes of autism as a diagnosis for boys and men • Red symbolizes love, celebration, & passion Read More: #RedInstead #WalkInRed“Toxic Autism Awareness: Fact from Fiction?” by Judy Endowhttp://www.judyendow.com/advocacy/toxic-autism-awareness-fact-from-fiction/

18. Values & CultureSymbols Âû AU - common abbreviation for autism, & chemical abbreviation of aurum (Latin for gold) Âû – autistic individuals and organizations (such as Âustic ûnion) often use this as a suffix added to their name A in Autistic may be capitalized as a proper noun, as seen with Deaf culture. Read more: #LightItUpGold

19. Values & Culture Self-Advocacy “Unless our voices count, the bad events that happened to me will happen again.”- Amy Sequenzia, “I am an Autistic Woman”What Every Autistic Girl Wishes Her Parents Knew Motto from Diversity Rights Movement “A hundred degrees on the wall from top universities may make you an expert in a field of a disorder, but they will never make you an expert on being autistic.” - Anonymous, “Tell Me I’m Autistic”What Every Autistic Girl Wishes Her Parents Knew

20. Values & Culture Self-Advocacy “Self-advocacy doesn’t always look good on paper. …real self-advocacy will always upset the status quo in some way. … Self-advocacy has been and is still is still often labeled intransigence, noncompliance, treatment resistance, lack of motivation, behavior issues, violence, manipulation, game-playing, attention-seeking, bad attitude, bad influence, babbling nonsense, self-injurious behavior, inappropriate behavior, disrespect, disruption of the milieu, catatonic behavior, social withdrawal, delusions, septal rage syndrome, and even seizures or reflex activity.”- Amanda Baggs, “The Meaning of Self-Advocacy” in Loud Hands Autistic Activist Sara Luterrman

21. Values & Culture The Social Model of Disability “Disability is injustice, not tragedy; unequal treatment, not inherent inequality.”- Cal Montgomery, “Critic of the Dawn” in Loud Hands AKA “personal tragedy model”

22. Values & Culture The Social Model of Disability “The Social Model of Disability talks about breaking down attitudinal and environmental barriers. … On the other side is the medical model: the belief that people have to be fixed and that doctors know best.”- Heigi Wangelin, “What I wish my parents knew about being their autistic daughter”What Every Autistic Girl Wishes Her Parents Knew “Autism has a coherence. It’s certainly a different way of experiencing the world, but the problem and the disorder happens because non-autistic people aren’t listening to actual autistics.”- Karen Lean, “A Particular Way of Being”What Every Autistic Girl Wishes Her Parents Knew

23. Values & Culture The Social Model of Disability • Social Model • Experience of disability is socially constructed by society’s barriers, negative attitudes, & exclusionary practices • Grows from experiences & self-determined needs of disabled people themselves • Seeks social change, not a cure • Medical Model • Locates disability in impairments of individual bodies • Seeks cures rather than social change • “Autistics find neither social constructionism nor biological determinism adequate on their own, but prefer to make a new synthesis by picking and choosing from the best of both worlds.” • - Judy Singer, in Neurodiversity: Birth of an Idea

24. Values & Culture The Social Model of Disability Read More:“Don’t Mourn for Us” by Jim Sinclair in Loud Hands: Autistic people, speaking, OR online athttp://www.autreat.com/dont_mourn.html

25. Values & CultureVisualizing the Spectrum

26. Values & CultureVisualizing the Spectrum “Don’t divide us into the good, obedient autistic people and the bad, disobedient autistic people, …. Just don’t compare. We already know there are vast differences between different kinds of autistic people. We already know that the differences that exist aren’t the difference between autism and Asperger’s, or HFA and LFA, but differences that have no names.” -Mel Baggs, “10 Things I Wish My Parents Had Known When I was Growing Up”, What Every Autistic Girl Wishes Her Parents Knew

27. Values & CultureVisualizing the Spectrum “The fact that while many of us are capable of doing some of those “high-functioning” things, very few of us are actually capable of doing all of them, is still not widely recognized. The tendency is to assume that those of us with a high degree of verbal ability are “high-functioning” in all other areas as well. The reality is quite different.”– Jim Sinclair, “Autism Network International: The Development of a Community and its Culture” “Some days, she may have fewer skills than others. This is more distressing for her than it is for you. Do not lose sight of this. It sucks not to know what your own capabilities are from day to day.” - Kassiane A. Sibley, “What Your Daughter Deserves: Love, Safety, and the Truth”

28. Values & CultureFunctioning Labels “I refer to myself as having spicy jalapeno autism!”- Keshia

29. Values & CultureFunctioning Labels “Perhaps you experience her weakness as what challenges you, and her strength as what pleases you.”- Karen Lean, “A Particular Way of Being”What Every Autistic Girl Wishes Her Parents Knew “’Low-functioning’ really means ‘far from passing for neurotypical, far from being able to do the things that neurotypicals think people should do, and far from being able to thrive in a society created by and for neurotypicals.’‘High-functioning’ means ‘closer to passing for neurotypical.’”- Nick Walker, “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm”Loud Hands

30. Values & CultureFunctioning Labels Functioning Labels are dehumanizing. “Labels are imposed on us by people who claim expertise on us, yet never really listen to us, and by people who use the labels but have no idea why they do so. Others use the functioning labels to separate ‘them’ from ‘us.’ They are good, we are bad; they can, we can’t. Being called ‘low-functioning’ and dismissed as a lost cause did enormous harm to my self-esteem.”- Amy Sequenzia, I am an Autistic Woman, What Every Autistic Girl Wishes Her Parents Knew

31. Values & CultureFunctioning Labels “Hidden abilities created the myth of “low functioning” autistics, like hidden disabilities created the myth of high-functioning autistics.” -Amy Sequenzia, “Loud Hands: I Speak Up With My Fingers” in Loud Hands Read more: ‘Non-speaking, “Low Functioning”’ and “Just Me” by Amy Sequenzia, in Loud Hands: Autistic People, Speaking

32. Values & Culture Identity-First Language

33. Values & Culture Identity-First Language “As an autistic, it is my right to claim the word ‘autistic’ as a word that is part of my personality and gifts without the negative repercussions associated with it during a long time of ignorance and ableism.” - HarkenSlasher, “Autistic” Name Calling: How and why it hurts an autistic” in The Weight of Our Dreams

34. Values & Culture Identity-first Language “The idea of autism as separable from autistic people has lead professionals and parent-advocates to disregard the priorities and perspectives of Autistic people themselves.”- Zoe Gross, “Metaphor Stole My Autism”in Loud Hands Read more: “Why I dislike ‘Person-First’ Language” by Jim Sinclair in Loud Hands Identity First Autistic: https://www.identityfirstautistic.org

35. Values & Culture Pride in Positive Autistic Traits “Believing that autistic traits are ‘bad’ while the rest of you is ‘good’ makes it more difficult to deal with the challenges those traits may present in the social environment than if you’re able to accept them and see them clearly for what they are.”- Lynne Soraya, “Autism, Self-Acceptance, and Hope” in What Every Autistic Girl Wishes Her Parents Knew

36. Values & Culture Pride in Positive Autistic Traits “The autism spectrum is inclusive of more than a series of impairments…”- Ari Ne’emen, “The Future (And the Past) of Autism Advocacy, or Why the ASA’s Magazine, The Advocate, Wouldn’t Publish This Piece”Loud Hands: Autistic people, speaking Autism is not a condition, it is a way of life.- Daniel McConnell, “Autism and Neurodiversity: A Panel Presentation at the 2008 Autism National Committee Conference”Typed Words, Loud Voices

37. Values & Culture Holidays Autistic Pride Day (June 18) • Celebrates neurodiversity, autistic community & culture • Encourages pride in an autistic identity • Recognizes the innate potential of all humans • Started in 2005 by the group Aspies for Freedom (AFF) • Mostly online event “Learning to be proud of who we really are seems to be a key element of moving beyond survival.”-Christy Oslund, “I Write, Therefor I am”Typed Words, Loud Voices

38. Values & Culture Holidays Autistics Speaking Day (November 1) • 2010, Australian autism organization launches “Communication Shutdown”– allistics are urged to stay off social media for one day in an attempt to understand communication and social difficulties of autistics • Heavily criticized by autistics online (disability simulations rarely improve empathy or understanding of the experiences of disabled people) • Canadian activist Corina Lynn Becker proposed Autistics Speaking Day to let the world know autistics are not silent • Encourages autistics to communicate about their experiences, especially using social media, blogs, and embracing a variety of ways of communicating • Promotes Autism Acceptance, inclusion of autistics in the community, and fights negative sterotypes • Read More: #ASDay“The Beginnings of Autistic Speaking Day” by Corina Becker, Loud Hands: Autistic people, speaking

39. Values & CultureHolidays: Disability Day of Mourning • International memorial held on March 1, honoring disabled people killed by their caregivers • Candles are lit, names of the dead are read aloud • Began with a vigil for George Hodgins in 2012: At age 22, George was shot and killed by his mother. Press coverage and public conversation widely focused on sympathizing with his killer while vilifying George for being disabled. • Caregivers who kill the disabled are given comparatively light sentences Read more: https://disability-memorial.org/“Killing Words” by Zoe Gross: https://autisticadvocacy.org/2012/04/killing-words/“A Letter to People at the intersection of autism and race” by Finn Gardiner, in All the Weight of Our Dreams

40. Values & Culture Holidays Autistic History Month (November) • A celebration of autistic history, culture, & community; as well as personal stories • “History affects people on the spectrum, as well as their family, friends, and employers”(autismcitizen.org) • Began in 2013 • Some years, autistic activists have held online events (2013, 2016, 2017) that include video, prose, poetry, & art • Sometimes referred to as “Autism History Month” • Read More:Our Autistic History (Month) https://ourautistichistory.wordpress.com/ • “Autistic History Month” by Sparrow Rose Jones, http://www.mcie.org/blog/autistichistorymonth

41. Values & Culture Holidays Autism Acceptance Day (April 2) & Autism Acceptance Month (April) • Began in 2011 as a response to Autism Speaks “Autism Awareness” campaigns • Focuses on sharing positive, respectful, & accurate info about autism • Celebrates autistic people and neurodiversity • Promotes the idea that autism is a natural variation of the human experience • Supports the creation of a world that values, includes, and celebrates all kinds of minds • Read More:https://www.autismacceptancemonth.com/

42. Values & CultureAwareness vs. Acceptance • Critiques of Autism Speaks-led “Autism Awareness” month: • Focuses on children, to the exclusion of adults (most autistics are adults, focusing on children is patronizing at first, excluding adults from needed services at worst) • Medicalized “scare talk” fraudulently compares autism to life-threatening medical diseases such as cancer (“epidemic,”“health crisis”) and advocates for a cure • Often perpetuates stigmatizing stereotypes • Often ignores the perspectives of actually autistic people • “Without acceptance, awareness does immeasurable harm to autistic people.”- Sparrow Rose Jones, “D is for depression (and anxiety)” in The ABCs of Autism Acceptance

43. Values & CultureAwareness vs. Acceptance “Tolerance says, ‘well, I have to put up with you.’ Awareness says, ‘I know you have a problem and are working earnestly to fix it.’ Acceptance says, ‘you are amazing because you are you, and not despite your differences, but because of them.”- Kassiane SibleyRadical Neurodivergence Speaking

44. Values & CultureAwareness vs. Acceptance “Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not.” - Sparrow Rose Jones, “A is for acceptance”The ABCs of Autism Acceptance Love us as we are, not as who you want us to be.Aaron Greenwood, “Hello Everyone” in Typed Words, Loud Voices Read More:Autism Acceptance Month - https://www.autismacceptancemonth.com/

45. Values & Culture Realism Neurodiversity is NOT:… a reason to deny supports & accommodations… a personal superpower … a negation of disability… the “next step in evolution” “Understand what acceptance really means. It does not mean no supports or accommodations. It does not mean no help or therapies. Acceptance means you accept your [client’s] Autistic neurology as valid.When we value Autistic and disabled lives, we understand that love and acceptance are critical. This idea is not controversial [in regards to] allistic children. When it comes to Autistic lives, however, we get frightening messages that who we are is broken and that we need to be fixed. Do not get caught up in those messages of fear.” - Lei Wiley-Mydske, “Change the World, Not Your Child”What Every Autistic Girl Wishes Her Parents Knew

46. Values & Culture Criticism The history of self-advocacy of disabled people is always met by resistance, and follows predictable scripts: Deny self-advocates / activists are members of the group they claim to be (“You’re not really autistic.”) 2. If they cannot deny, claim the activist is a rare exception to the group (“You’re high functioning / verbal / et al, you can’t speak for others.”) 3. If they cannot, claim the activist doesn’t know what is best for themselves (“As a parent/therapist, I know what is best.”) - Jim Sinclair, “Autism Network International: The Development of a Community and its Culture” Autistic Dark Web (ADW) – sub-culture of autists, professionals, & family members who criticize the positivity of the neurodiversity movement and promote a return to the medical model; often affiliated with right-wing politics & chan websites, commonly said to include “sock puppet” accounts on social media, it’s generally unknown how many people identify w/ADW Read more: “Loud Hands and Loud Voices” by Penni Winter in Loud Hands: Autistic people, speaking“Disability Catch-22s” by Zoe Gross, in Loud Hands

47. Values & Culture Experiences in Therapy “I wish I could have grown up in an environment where I wasn’t constantly treated like I was broken. I felt like I wasn’t OK unless I learned to act like everyone else. I realized later on that my mom sent me to therapists partly thinking that they would instruct me in doing whatever my mom said.”- Katie Leven, “What I Wish You Knew”What Every Autistic Girl Wishes Her Parents Knew “Therapies that value compliance and normalcy or sameness amongst peers are not respectful of your [client’s] dignity, individuality, and autonomy.” - Lei Wiley-Mydske “Change the World, Not Your Child”What Every Autistic Girl Wishes Her Parents Knew

48. Values & Culture Experiences in Therapy: ABA “ABA is abuse.” “ABA is masking class.”“ABA is Autism Conversion Therapy.” • Created by Ivar Lovass • Grew out of early models of gay conversion therapy (“Feminine Boy Project” with George Rekers – co-founder of Family Research Council – treated “deviant sex-role behaviors in male children) • Originally used techniques such as slapping, screaming at children, forcing children to hug/kiss “therapists,” withholding food, hitting with objects, pinching, spraying in the face with water • Brings up serious questions about the dignity, autonomy, and rights of children • Linked to PTSD in adults • Judge Rotenberg Center (JRC) • special needs day school & residential facility in Canton, MA for age 5+ • Uses electric shocks and restraints on students

49. Values & Culture Experiences in Therapy: ABA “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose, and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”- Ivar Lovass, Psychology Today, January 1974 Full interview: http://neurodiversity.com/library_chance_1974.pdf “Because ABA does not see us as fully human, we are not allowed self-determination, unless it is not really ‘self’ but compliant with the therapist’s determination to change us.” – Amy Sequenzia

50. Values & Culture Experiences in Therapy: ABA • Goals and objectives often focus on masking/camouflaging autistic characteristics (suppression of healthy stimming, pathologizing special interests) • Compliance training grooms children to accept abuse • Focus on up to 20/+ hours of table work or more exhausts a child’s resources • Can involve restraints, aversives, or punishments (restraints have led to death and disability; aversives include vinegar sprayed into mouth, hot sauce on lips, megaphone beeping in ear, ice packs placed in clothing, spraying water in face, or even electric shocks using devices not approved by the FDA) • Can involve ignoring serious emotional distress as “attention seeking behavior” • Read More: • “Autism Conversion Therapy” by Amy Sequenziahttps://awnnetwork.org/autistic-conversion-therapy/ • Neurotribes: The legacy of autism and the future of neurodiversity by Steve Silberman • “Therapy to change ‘feminine boy’ created a troubled man, family says” by Bronstein & Joseph for CNNhttp://www.cnn.com/2011/US/06/07/sissy.boy.experiment/index.html • “Quiet Hands” by Julia Bascom, in Loud Hands • “Inhumane Beyond all Reason: …” by Shain Neumeier, J.D. in Loud Hands