Embracing Neurodiversity Advocacy and Allyship Jessica Leza MA

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

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).

Overview 1. 2. 3. 4. 5. What is neurodiversity? Terminology Values & culture of the neurodiversity movement Autistic Experiences of Therapy Implications for clinical practice in MT Additional resources Power. Point available at: http: //www. Jessica. Leza. com

What is Neurodiversity? Terminology Neurodiversity (ND) the phenomena of naturally-occurring, neurological diversity Term 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

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

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

What is Neurodiversity? Terminology

What is Neurodiversity? Terminology: Who is Neurodivergent? Neurodivergent (ND): people w/neurology different from the majority (see also, neurominority) Who is neurodivergent? ü ü ü ü ü 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

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

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)

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.

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) ü 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 ü systems of knowledge shared by a group of people ü communication, cultivated behavior, and patterns ü a way of life of a group of people ü symbolic communication, including a group’s skills, knowledge, attitudes, values, and motives

Values & Culture of the Neurodiversity Movement 1. Symbols 2. Self-Advocacy: “Nothing about us, without us. ” 3. The Social Model of Disability 4. Visualizing the Spectrum 5. Functioning Labels 6. Identity-first language (IFL) 7. Autistic Pride 8. Holidays 9. Moving beyond awareness to acceptance 10. Realism 11. Criticism of Neurodiversity 12. Experiences in Therapy

Values & Culture Symbols

Values & Culture Symbols

Values & Culture Symbols • April 2014, Jimmy Orr releases “We’ll Get By (the autism song)” featuring stigmatizing lyrics (“my autism is a prison”) https: //youtu. be/1 Mb. Wshaywm. U • 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

Values & Culture Symbols 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: #Red. Instead #Walk. In. Red “Toxic Autism Awareness: Fact from Fiction? ” by Judy Endowhttp: //www. judyendow. com/advocacy/toxicautism-awareness-fact-from-fiction/

Values & Culture Symbols û AU - common abbreviation for autism, & chemical abbreviation of aurum (Latin for gold) û – autistic individuals and organizations (such as ustic 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: #Light. It. Up. Gold

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

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. … Autistic Activist Sara Luterrman Self-advocacy has been and is still often labeled intransigence, noncompliance, treatment resistance, lack of motivation, behavior issues, violence, manipulation, gameplaying, 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

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”

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

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

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 at http: //www. autreat. com/dont_mourn. html

Values & Culture Visualizing the Spectrum

Values & Culture Visualizing 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

Values & Culture Visualizing 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”

Values & Culture Functioning Labels “I refer to myself as having spicy jalapeno autism!” - Keshia

Values & Culture Functioning 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

Values & Culture 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

Values & Culture Functioning Labels “Hidden abilities created the myth of “low functioning” autistics, like hidden disabilities created the myth of highfunctioning 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

Values & Culture Identity-First Language

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. ” - Harken. Slasher, “Autistic” Name Calling: How and why it hurts an autistic” in The Weight of Our Dreams

Values & Culture Identity-first Language “The idea of autism as separable from autistic people has lead professionals and parentadvocates 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

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

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 Mc. Connell, “Autism and Neurodiversity: A Panel Presentation at the 2008 Autism National Committee Conference” Typed Words, Loud Voices

Values & Culture Holidays Autistic Pride Day (June 18) “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 • 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

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

Values & Culture Holidays: Disability Day of Mourning Read more: https: //disability-memorial. org/ • 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 “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

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

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/

Values & Culture Awareness 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 lifethreatening 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

Values & Culture Awareness 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 Sibley Radical Neurodivergence Speaking

Values & Culture Awareness 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/

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

Values & Culture Criticism The history of self-advocacy of disabled people is always met by resistance, and follows predictable scripts: 1. 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-22 s” by Zoe Gross, in Loud Hands

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

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 sexrole 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

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 therapist’s determination to change us. ” – Amy Sequenzia

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 Sequenzia https: //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 CNN http: //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

Implications for Clinical Practice in Music Therapy 1. “Nothing about us, without us” – prioritize autistic voices 2. Avoid restraints & aversives (punishments) 3. Respect non-traditional forms of communication (including echolalia/scripting, sign, and AAC/VODs) 4. Learn about the characteristics of “atypical autism” (also called “female phenotype”) 5. Celebrate Autism Acceptance & Autism Appreciation 6. “Stay up-to-date with best practices for providing therapy to LGBTQ+ clients: high numbers of autistics have complex sexual & gender identities don’t assume autistic clients are straight & cis-gendered autistic identity & sexual/gender expression are so intertwined people use terms such as autigender & neuroqueer 7. Investigate ways MT can support common struggles identified by autistics, for ex: “autistic inertia” - difficulty with transitions/shifting between tasks, e. g. remembering to use the restroom when hyperfocused on special interests executive functioning – commonly identified as a significantly disabling problem, “EF overload” can be triggered by common activities - filling out forms, self care, housework

Implications for Clinical Practice in Music Therapy 8. “Acknowledge vulnerability, presume competence” 9. Exam the meanings of dependence 10. Teach self-advocacy skills and respect the survival value of noncompliance 11. Celebrate safe stimming 12. Celebrate special interests as passions, not pathologized as fixations 13. Be sensitive to the ways in which race/ethnicity impacts autistic lives 14. Be aware of the factors contributing to, and impacts of, misdiagnosis/late diagnosis (e. g. therapists can assist w/emotional reactions to late diagnosis, self-care skills, & self-discovery process) 15. Understand the phenomena of masking/camouflaging 16. Be prepared to challenge stereotypes about autism and empathy 17. Understand shutdowns & autistic burnout – it’s not only about meltdowns 18. Ensure goals and objectives are functional, rather than conformist 19. Understand the effects and needs created by common co-morbids like alexithymia and prosopagnosia 20. Advocate for autistic peer support and access to the broader autistic community 21. Involve autistic people when designing research.

Implications for Clinical Practice in Music Therapy: Respect different communication methods “…how someone communicates is a vital part of their identity – whether it be through letterboard, AAC device or otherwise. The most important thing is that whatever is being said, however it is being said, is being heard. ” - Eva Sweeney, “I am the Perfect Candidate” in Typed Words, Loud Voices • Improvements in verbal communication skills can lead to regression in other areas (ability to process sensory input, visual memory, facial recognition) – perhaps due to cognitive overload • Don’t demand someone use speech in every context merely because you believe they can • Non-speaking people may be witness and/or be trusted with profound secrets – be mindful of how this could impact someone’s wellbeing as they develop and use language • Be patient! Read more: “Ask Me! I’m an AAC user” facebook group: http: //www. facebook. com/groups/456220758119314/

Implications for Clinical Practice in Music Therapy: Respect different communication methods “Typing unsticks the words in my brain. Words that would otherwise wither in my chest and hang there, silent, airless. Words that would clog my throat, too heavy with meaning to surface. ” - Cynthia Kim, “A Barrier of Sound, Not of Feeling” in Typed Words, Loud Voices “Communication, for everyone, is always evolving, can always be improved upon, takes time and care to be successful. ” - Anonymous, “My Many Communication Systems” in Typed Words, Loud Voices

Implications for Clinical Practice in Music Therapy: “Acknowledge vulnerability, presume competence” “I may not be capable of toughening up, …. I will not develop an immunity to sensory or emotional pain simply by prolonged exposure, even if that exposure is called therapy. … Presumption of competence is not a completed act. It is an exercise, a constant work in progress. In order to practice this principle, you need to keep your heart open to being wrong. ” – Bridget Allen, “Acknowledge Vulnerability, Presume Competence” in What Every Autistic Girl Wishes Her Parents Knew

Implications for Clinical Practice in Music Therapy: “Acknowledge vulnerability, presume competence” “… approach each [person] as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute. ” - Dr. Douglas Biklen “It doesn’t mean to assume that a person faces no barriers, and it is never an excuse for withholding supports and accommodations. ” - Sparrow Rose Jones, “B is for bullying” The ABCs of Autism Acceptance

Implications for Clinical Practice in Music Therapy: Presuming Competence: Language “Think about the language you use. Make a conscious effort to refer to a person’s autism in ways that do not devalue them or set them up to feel that something about them is wrong or inappropriate. The words you use are an important part of autism acceptance. Words have power to hurt or heal; choose your words wisely. ” - Sparrow Rose Jones, “I is for Identity-First Language” from The ABCs of Autism Acceptance “We must hold ourselves accountable for examining and deconstructing ableism in all its forms in our work, our communities, our personal lives, and our relationships with each other. ” -Lydia X. Z. Brown, “Why the term ‘psychopath’ is racist & ableist’ in All the Weight of Our Dreams

Implications for Clinical Practice in Music Therapy: “Acknowledge vulnerability, presume competence” Presuming competence requires patience! “It can take me a bit to process a conversation, so giving me time to think about my responses without any pressure will make my answers less scripted. This allows for better communication. Needing that time doesn’t mean we’re slow. It’s processing info from all directions. ” - Lis (@Super. Thunk)

Implications for Clinical Practice in Music Therapy: Examine Meanings of Dependence “Independent can mean self-governing. It can also mean self-reliant… Dependent can mean controlled by others. It can also mean requiring the support of others… Some rely on supports which are so common as to go unnoticed, while others use support that is atypical and therefor apparent. ” -Cal Montgomery, “Critic of the Dawn” Loud Hands: Autistic people, speaking “Independence is a moving target. ” - Kristina Thomas, “A Thank You Letter to Parents of Autistic Girls” What Every Autistic Girl Wishes Her Parents Knew

Implications for Clinical Practice in Music Therapy: The Survival Value of Noncompliance Teach self-advocacy & respect the survival value of noncompliance “Every day of childhood is practice for adulthood. We’re vulnerable. We need extra boundary-setting practice. We need to learn this skill with people who would never hurt us, so when we need to stand up to those who would, we know how. ” – Kassiane A. Sibley, “What Your Daughter Deserves: Love, Safety, and the Truth” What Every Autistic Girl Wishes Her Parents Knew ”I need to have the power to say no. … Autonomy is Dignity. … Make sure I know my rights. ” – Bridget Allen, “Acknowledge Vulnerability, Presume Competence” What Every Autistic Girl Wishes Her Parents Knew

Implications for Clinical Practice in Music Therapy: The Survival Value of Noncompliance “Teaching me to fight for my rights was more important than forcing me to fit in. … I spent a lot of time learning to deny my natural impulses and feelings in order to conform to what was expected of a ‘good girl. ’ In doing so, I opened myself up to become a victim of both emotional and sexual abuse from adults and intense bullying from my peers. The way I experienced the world around me was supposedly wrong, and there was no argument. So I remained silent, always. - Lei Wiley-Mydske, “Change the World, Not Your Child” What Every Autistic Girl Wishes Her Parents Knew

Implications for Clinical Practice in Music Therapy: The Survival Value of Noncompliance “Compliance therapies that do not care why a child is not complying are teaching your child that she does not own her body and that she is not allowed to make her own decisions. What makes Behavioral Momentum particularly insidious is that it models the way young boys attempt to encourage young girls to engage in sexual activity before they are ready. … You are training her to say yes again and again, no matter where the boy moves his hand no matter how she really feels about his hand being there. ” - Sparrow R. Jones, “Keep Her Safe; Let Her Fly Free” What Every Autistic Girl Wishes Her Parents Knew “It is a fundamental human right to say ‘no. ’” - Sparrow Rose Jones, “N is for No Means No” The ABCs of Autism Acceptance

Implications for Clinical Practice in Music Therapy: Encouraging Safe Stimming Increase your empathy & understanding of a client’s stim: • • Privately, try out a stim - focus on how it feels Repetitive behaviors are methods of calming that facilitate self-regulation. Consider how stimming can support goals & objectives Think about ways you might stim: What role this plays in your life? When do you do it? How do you feel? Consider the aesthetic value of a stim – your autistic client might know about a special beauty that can be explored in music therapy Communicate appreciation & acceptance of safe stims: • • • Create a kit of non-musical stimmy items to include with your instruments Design your therapy space to create opportunities for safe stimming Explore ways that stimming can be integrated into musical play Use your client’s unique stims to musically & non-musically communicate Interactive stimming is a natural autistic social behavior (Jim Sinclair)

Implications for Clinical Practice in Music Therapy: Encouraging Safe Stimming “If you deny your [client’s] desires and pain around her sensory world she may learn that her body and boundaries are not worth respecting. As a child I learned that my body and my boundaries were wrong. I learned that my discomfort couldn’t possibly be real because my discomfort was uncommon. … I learned to put up with extreme bodily discomfort. Relent to pain often enough and it doesn’t become less painful, it becomes a lesson that the pain doesn’t matter. … I strongly connect disrespecting my sensory boundaries with a vulnerability to unwanted sexual contact. … Sexual safety means nothing if we ignore our most basic needs for sensory safety. ” - Karen Lean, “A Particular Way of Being” What Every Autistic Girl Wishes Her Parents Knew

Implications for Clinical Practice in Music Therapy: Encouraging Safe Stimming Ideas for a traveling sensory kit: - Re-usable silicon sponges, squishy toys - Ribbons - Grasp strengthening tools, exercise bands - Autistic / ND-owned small businesses can be a - great source (e. g. @stimtastic) Check out What is Stimming? The Stimming Checklist for more ideashttp: //what-isstimming. org/ To normalize stimming in your sessions … just add music! Rocking, swaying, bouncing, jumping, and other repetitive movements can be validated as dance, & vocalizations as singing. See Agony Autie’s #stimdancing

Implications for Clinical Practice in Music Therapy Special Interests are passions, not obsessions. “The way I love? It is deep. Autism is deep love. People write it off as special interest or obsession, but even if it’s not something I can excel at, I can excel at loving what I love, loving what I do, loving who I love. Autism is being able to be consumed by love and interest, it is giving 100% because it is an insult to the thing one loves to give any less. Autism is going big or going home. ” - K, in “L is for Love” The ABCs of Autism Acceptance

Implications for Clinical Practice in Music Therapy Intersection of Autism & Race Ex. of common themes an autistic person of color might experience: ² Struggle w/cultural expectations & culturally based power dynamics, in addition to the expectations of majority US culture ² Feeling of being an embarrassment to your family/community ² Harsh backlash from family/community for violating norms ² Feeling out of place within their own ethnic group, as well as out of place from the world in general -E. Ashkenazy, in All the Weight of Our Dreams, p. xxxiv-xxxv “It is impossible for me to separate my experiences as autistic and disabled from my experience as East Asian, Chinese, Asian American, and person of color. ” -Lydia X. Z. Brown, “I, too, am racialized” in All the Weight of Our Dreams ² Difficulties accessing services (including diagnosis, therapy, accommodations, housing, medical care) ² Facing both racial & albleist discrimination ² Feeling pressured to simultaneously assimilate to both mainstream US culture & to neurotypical culture

Implications for Clinical Practice in Music Therapy Intersection of Autism & Race ² Minority ethnic communities may be a refuge, where someone is able to be themselves (e. g. “be openly autistic”) ² Social & communication differences may be misattributed to ethnic background ² Church communities may be a source of confusing social rules ² Media representation is most often white, cismale Read More: All the Weight of Our Dreams: On Living Racialized Autism, Ed. Lydia X. Z. Brown, E. Ashkenazy, Morenike Giwa Onaiwu (2017) Begeer, S. , Bouk, S. E. , Boussad, W. , Terwogt, M. M. , Koot, H. M. (2009) Underdiagnosis and referral bias of autism in ethnic minorities. Journal of Developmental Disorders, 39, 142 -148. https: //www. ncbi. nlm. nih. gov/pubmed/18600440

Implications for Clinical Practice in Music Therapy: Misdiagnosis Minorities, girls/women, nonbinary people often misdiagnosed w/depression, eating disorders, ADHD, borderline, anxiety, depression … while autism remains undiagnosed. WHY? • • Atypical presentation of autistic traits Increased use of masking in girls/women May be influenced by expectations for the performance of gender Access to diagnosis ($$$) Cultural barriers can include distrust of mental health/medical establishment; cultural beliefs regarding disability Health professionals often lack a nuanced and contemporary education about autistic traits CAUTION!! Therapeutic approaches designed for allistics (e. g. CBT) may not be as effective or could even be potentially harmful for autistics – including those who are undiagnosed or misdiagnosed Read more: “Women and Girls” learning module from the National Autistic Society https: //www. autism. org. uk/professionals/training-consultancy/online/women-and-girls. aspx

Implications for Clinical Practice in Music Therapy: Masking / Camouflaging Read more: #Take. The. Mask. Off Camouflage: The Hidden Lives of Autistic Women by Dr. Sarah Bargiela, art by Sophie Standing in All the Weight of Our Dreams “Acting Abled, Acting White” by Amanda Filteau, “Passing-and Passing” by Jane Strauss, “Passing Without Trying” by Daniel Au Valencia in What Every Autistic Girl Wishes Her Parents Knew “Autism, Self-Acceptance, and Hope” by Lynne Soraya, “Tell Me I’m Autistic” by Anonymous in Loud Hands “I Hid” by Alyssa Zisk Cage, E. , Troxell-Whitman, Z. (2019). Understanding the reasons, contexts, and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders. Retrieved from: https: //link. springer. com/article 10. 1007%2 Fs 1080 3 -018 -03878 -x

Implications for Clinical Practice in Music Therapy: Empathy • • • overwhelming empathy might be felt, but not expressed in conventional ways intensity of emotional empathy can become overwhelming can result in emotional overload – which can cause meltdowns & shutdowns Can result in feeling deep emotional connections to certain common objects, animals, people can cause problems with selfadvocacy, relationships, & selfcare

Implications for Clinical Practice in Music Therapy: Empathy • • • Cognitive empathy also referred to as “Theory of Mind” Deficits in cognitive empathy also called “mind-blindness” Apparent deficits in cognitive empathy could be due to comorbid alexithymia Read More: “Autistic People & Empathy: What’s the Real Story? ” by Helen Wallace-Iles on The Art of Autism: https: //the-art-of-autism. com/autisticpeople-empathy-whats-the-real-story/ Autism and Empathy Blog (Rachel Cohen-Rottenberg) https: //autismandempathyblog. wordpress. com/

Implications for Clinical Practice in Music Therapy: Autistic Burnout • Can be caused by: long-term masking significant life changes continual sensory / social overload frequent meltdowns/shutdowns sleep deprivation, malnutrition, dehydration, illness • Can result in regression: Loss of verbal ability Loss of social skills Decreased ability to perform ADLs Increased sensory sensitivity Increased executive functioning difficulties Lack of motivation Exhaustion, fatigue, lethargy Increased GI issues Memory loss MTs in adult medical/mental health/substance abuse settings: autistic burnout could cause clients to seek services, even when clients are misdiagnosed or undiagnosed autistic, and/or unable to identify autistic burnout as the cause of their problems! Faculty & supervisors: autistic burnout could impact your autistic MT students!

Implications for Clinical Practice in Music Therapy: Autistic Burnout “It may be the people most capable of passing for normal, the most obvious ‘success stories’ in the eyes of non-autistic people (some of whom become so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die. ” - Mel Baggs, “Help! I Seem to be Getting More Autistic!” Autism Information Library Read more: http: //archive. autistics. org/library/more-autistic. html

Implications for Clinical Practice in Music Therapy: Functional and Appropriate Goals – NOT CONFORMITY “This indistinguishable from peers goal is one that only a tiny fraction of Autistic people are even able to accomplish. ” Therapies that promote conformity “are not really meant to help us. They are meant to make others feel more comfortable around us, to allow others to try to forget that we are Autistic. Teaching us that we need to stop looking ‘too autistic’ if we want to be treated with dignity and have a happy and productive life teaches us that who we are is wrong and ugly and unacceptable. ” - Sparrow Rose Jones, “Q is for Quiet Hands Getting Loud” The ABCs of Autism Acceptance “Typicality is not a realistic goal, but being able to express wants and needs is. ” - Kassiane Sibley, in “Advocacy: Everyone Can Do It” in Loud Hands Read More: “Loud Hands and Loud Voices” by Penni Winter in Loud Hands: Autistic people, speaking

Implications for Clinical Practice in Music Therapy: Functional and Appropriate Goals – NOT CONFORMITY “Why is speech supposed to be the ultimate goal of so many autism therapies? … I have a right to communicate in whatever means is possible for me to communicate. … I have the right to choose what means of communication is appropriate for me. … … If I am able to speak but it is painful, difficult, and draining, I should also be given and allowed those other options. ” - Amanda Baggs, “Autism, Speech, and Assistive Technology” in Loud Hands

Implications for Clinical Practice in Music Therapy: Areas of Need Identified by Autistics Alexithymia AKA“Emotional blindness: ” inability to feel/recognize/identify, label, &/or describe internal emotional states in the self &/or others • • Can cause difficulty accessing medical care and participating in therapy. Consider how alexithymia could present as “resistance” in your clients Occurs on a spectrum in ~5 -10% of the general population, more common in ASD Can be state/acute (e. g. trauma reaction) or trait/chronic (e. g. neurological) • • • Tends to be a stable trait over time in ASD population May be related to interoceptive challenges (interoception = awareness of one’s body) Can contribute to lack of impulse control, disruptive outbursts, seeming indifference towards others, heightened sensory sensitivity Can have cognitive & affective components Can be associated w/variety of conditions other than autism (depression, eating disorders, substance abuse, brain injuries, PTSD)

Implications for Clinical Practice in Music Therapy: Areas of Need Identified by Autistics Alexithymia • Treatment strategies can include: naming emotions, reading emotional stories/books, group therapies, journaling, skillbased therapies, relaxation, participation in creative arts Read more: Allen, R. , & Heaton, P. (2010). Autism, Music, and the Therapeutic Potential of Music in Alexithymia. Music Perception: An Interdisciplinary Journal, 27(4), 251 -261. DOI: 10. 1525/mp. 2010. 27. 4. 251 http: //mp. ucpress. edu/content/27/4/251. abstract Articulate clients who present as “emotionally mature” & selfaware in therapy can be alexithymic – Music can serve as a powerful nonverbal tool for increasing emotional understanding & expression

Implications for Clinical Practice in Music Therapy: Prosopagnosia • aka “face blindness”, facial agnosia • neurological condition, causes difficulty/inability in recognizing faces • When severe, faces cannot be differentiated from objects • not related to memory function, memory loss, or learning disability • May result from differences in right fusiform gyrus • Developmental prosopagnosia often runs in families • Very common co-morbid with autism Help clients use compensatory techniques: • bring a familiar instrument with you to aid in recognition • Teach compensatory strategies in therapy • name tags for therapists/staff and group members • Be patient! Don’t take it personal if you are not recognized! Read More: “What is Face blindness? ” by Julie Leibach: https: //www. sciencefriday. com/articles/what-is-face-blindness/

Implications for Clinical Practice in Music Therapy: Peer Support and Community What is “autistic space? ” a place and time when it is OK to be autistic “Autistic space” - a place autistics can meet one another and … … “people don’t expect me to be any certain way” … Not much surprises / offends others … “Nobody tries to make me more like themselves. ” … “People accept my interests and don’t try to change them. ” … different age groups can meet one another … be encouraging … take time explaining & re-explaining things, in different ways, until everyone understands (“culture of explanation”) … say “I need help reacting to something. ” (express and get assistance w/empathy overload, emotional shutdown) (Lydia X. Z. Brown, “Too Dry To Cry” in All the Weight of Our Dreams) (summarized from essays in Loud Hands: Autistic people, speaking)

Implications for Clinical Practice in Music Therapy: Peer Support and Community “With all the negativity directed at us and at our neurology, we need good role models who have had similar experiences to help us, and who truly support us, to teach us how to cope and how to fight against the barriers and toward acceptance. … Community and role models are the best source for a happy autistic outcome. ” - Amy Sequenzia, “I am an Autistic Woman” What Every Autistic Girl Wishes Her Parents Knew “One of the best things about tapping into the resources that Autistic adults provide is that, unlike the experts, they don’t insist there is one way to learn and progress. ” - Beth Ryan, “Afterword” What Every Autistic Girl Wishes Her Parents Knew

Implications for Clinical Practice in Music Therapy Consider the benefits of a group with mixed age demographics.

Implications for Clinical Practice in Music Therapy: Potential Research Areas of need identified by teen and adult autistics • Positive ways to live with autism, especially as an adult in regards to issues like diagnosis and employment (research tends to focus exclusively on children) • Recovering from burnout and burnout-related regression • Effective interventions for communication skills, executive functioning • Significance/meaning of disability movements for autistics • Atypical responses to both medical & non-medical treatments (e. g. CBT, medications, caffeine) • Treatment needs & effective interventions for dual diagnoses (e. g. anxiety, eating disorders) • Support and education needs of family / caregivers • Medical treatments for common co-morbid diagnoses such as Ehlers-Danlos Syndrome (EDS, a connective tissue disorders marked by joint hypermobility, skin hyperextinsibility, & tissue fragility), epilepsy, apraxia of speech, GI disorders, sleep disorders, eating disorders • The majority of Autistic people do NOT want a cure, a prevention strategy, or a way to “overcome” autism. • Sensory/Perceptual Differences ex: habituation (how do autistics habituate differently from allistics) • Changes Across the Lifespan - working memory, executive function, and sensory issues in aging autists - sensory impacts, executive function changes during menopause - End-of-life care Read more: https: //www. autistica. org. uk/our-research/your-research-priorities

Additional Resources: Books • • • Loud Hands: Autistic People, Speaking, from the Autistic Self Advocacy Network (ASAN) What Every Autistic Girl Wishes Her Parents Knew A collection of 25 shorts essays by autistic women, published by the Autism Women’s Network All the Weight of our Dreams: On living racialized autism, ed. L. X. Z. Brown, E. Ashkenazy, M. G. Onaiwu, published by Autism Women’s Network Neurotribes: The legacy of autism and the future of neurodiversity by Steve Silberman (a history of autism) The ABCs of Autism Acceptance by Maxfield (Sparrow Rose) Jones Camouflage: The Hidden Lives of Autistic Women by Dr. Sarah Bargiela, art by Sophie Standing No You Don’t: Essays from an Unstrange Mind by Maxfield (Sparrow Rose) Jones The Autistic Brain: Thinking Across the Spectrum, by Temple Grandin Why Johnny Doesn’t Flap: NT is OK! By Clay & Gail Morton An illustrated children’s book that subjects neurotypical people to the type of analysis usually reserved for explaining the neurodivergent.

Additional Resources: Books • • • Neuro. Diversity: The Birth of an Idea by Judy Singer (honors thesis in sociology, credited with coining the term neurodiversity) Making Lemonade: Hints for Autism’s Helpers by Judy Endow (poetry) Typed Words, Loud Voices Anthology edited by Amy Sequenzia & Elizabeth J. Grace Nobody, Nowhere and Somebody, Somewhere by Donna Williams The Reason I Jump, by Naoki Higashida (memoir of an autistic teen boy) Cognitive-Behavioral Therapy for Adults with Autism Spectrum Disorder, 2 nd Ed by Valerie L. Gaus Neurodivergent Perspectives on other diagnoses • • The Collected Schizophrenias: Essays by Esme Weijun Wang Count Us In: Growing Up with Down Syndrome by Jason Kingsley & Mitchell Levitz. Two young men with Down Syndrome discuss their live experiences and ambitions

Additional Resources: Organizations • • • Autistic Women & Nonbinary Network (AWN) Formerly known as Autism Women’s Network https: //awnnetwork. org/ Autistic Self Advocacy Network (ASAN) https: //autisticadvocacy. org/ Autism Network International (ANI) One of the first organizations made by and for autistics, firmly aligned w/disability rights movements; a good source for autistics seeking information about autism to better understand themselves, help w/practical solutions to everyday problems, and affirmation in a strengths-based perspective http: //autismnetworkinternational. org/ UK Autistic https: //autisticuk. org/ Aspies for Freedom (AFF) accepts & seeks to unite all people on the spectrum; began Autistic Pride Day http: //www. aspiesforfreedom. com/ Asperger/Autism Network (AANE) https: //www. aane. org/

Additional Resources: Articles and Essays • • « Don’t Mourn for Us » by Jim Sinclair Also published in the book Loud Hands, a direct challenge of the “autism as tragedy” narrative http: //www. autreat. com/dont_mourn. html « Autistic Adults Do Not Look Like Autistic Children » by Judy Endow, Aspects of Autism Translated (3/23/2015)http: //www. judyendow. com/autisticbehavior/autistic-adults-do-not-look-like-autistic-children/ « Smiling Teeth With Fangs» by Mel Baggs A cultural clash between Nice Lady Therapists & Mel’s Okie family; Cussin’ and Discussin’ (5/24/2018) https: //cussinanddiscussin. wordpress. com/2018/05/04/smiling-teeth-with-fangs / « Neuroqueer: An Introduction » by Nick Walker http: //neurocosmopolitanism. com/neuroqueer-an-introduction/? fbclid=Iw. AR 0 a-z. Buy. Yr 3 Kk 4 x. Jeu_fp. Ftemy 93 L 0 JQJEJRg. F-vwc. Wc_Lt. Ps. OTZCj. QEg « Accessible Healthcare for Autistic Adults » by Cynthia Kim (AWN) https: //awnnetwork. org/accessible-health-care-for-autistic-adults / « You Don’t Seem Autistic: Unwrapping diagnostic criteria » by Martha Rose Saunders https: //medium. com/@mxrtharose/you-dont-seem-autistic-unpacking-diagnostic-criteria 553 f 023 fe 0 bb “Autism and Depression: Study shows why ‘gold standard treatment’ sometimes fails” by Kristen Hovet, Genetic Literacy Project https: //geneticliteracyproject. org/2019/01/15/autism-and-depression-study-shows-why-goldstandard-treatment-sometimes-fails/

Additional Resources: Articles and Essays • • • «Gendervague: At the Intersection of Autistic and Trans Experiences» by Lydia X. Z. Brown https: //www. aane. org/gendervague-intersection-autistic-transexperiences/? fbclid=Iw. AR 0 b. M 7 RZ 5 Zhwpd. Yr. TQx. CVBVDl-nlt. QL 6 a. B-ek. Dl. ZQVZg 6 y. CDskvh. XBb. Pk 7 I « Killing Words» by Zoe Gross From the activist who helped create the Disability Day of Mourning https: //autisticadvocacy. org/2012/04/killing-words/ « Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradign» by Nick Walker http: //neurocosmopolitanism. com/throw-away-the-masters-tools-liberating-ourselves-from-thepathology-paradigm/

Additional Resources: Research Allen, R. , & Heaton, P. (2010). Autism, Music, and the Therapeutic Potential of Music in Alexithymia. Music Perception: An Interdisciplinary Journal, 27(4), 251 -261. DOI: 10. 1525/mp. 2010. 27. 4. 251 http: //mp. ucpress. edu/content/27/4/251. abstract Bargiela, S. , Steward, R. , Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: an investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10). Retrieved from https: //www. ncbi. nlm. nih. gov/pmc/articles/PMC 5040731/ Cage, E. , Troxell-Whitman, Z. (2019). Understanding the reasons, contexts, and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders. Retrieved from: https: //link. springer. com/article/10. 1007%2 Fs 10803 -018 -03878 -x Jacques, C. , Courchesne, V. , Meilleur, A. A. , Mineau, S. , Ferguson, S. , Cousineau, D. , et al. (2018). What interests young autistic children? An exploratory study of object exploration and repetitive behavior. PLo. S ONE, (13)12. Retrieved from: https: //journals. plos. org/plosone/article? id=10. 1371/journal. pone. 0209251 Mottron, L. (2017). Should we change targets and methods of early intervention in autism, in favor of a strengths-based education? . European Child and Adolescent Psychology, (26)7, 815 -825. Retrieved from https: //www. ncbi. nlm. nih. gov/pmc/articles/PMC 5489637/

Additional Resources: Websites and Social Media • • • Aspects of Autism Translated (Judy Endow, MSW, LCSW) – Judy writes from the perspective of both an experienced mental health professional and a person who was institutuionalized http: //www. judyendow. com/ Neurocosmopolitanism (Scott Walker) - http: //neurocosmopolitanism. com/ Autistic Hoya (Lydia X. Z. Brown) - https: //www. autistichoya. com/ Radical Neurodivergence Speaking - http: //timetolisten. blogspot. com/ Neurodivergent Rebel (Christa Holmans) - https: //neurodivergentrebel. com/ Unstrange Mind (Max Sparrow, formerly Sparrow Rose Jones) http: //unstrangemind. com/ Parenting Autistic Children with Love and Acceptance (PACLA) https: //autloveaccept. wordpress. com/ Olliebean. com – Autism & Disability Rights blog featuring a variety of authors / activists Autistic Not Weird – Insights from an autistic teacher, writer, and speaker http: //autisticnotweird. com/ NOS Magazine – Neurodiversity Culture & Representation http: //nosmag. org/ Thinking Person‘s Guide to Autism – Autism News & Resources http: //www. thinkingautismguide. com/

Additional Resources: Websites and Social Media • • Neurodiversity Library: http: //Neurodiversity. Library. org What is Stimming? The Stimming Checklist http: //what-is-stimming. org/ Identity First Autistic: https: //www. identityfirstautistic. org Wrong Planet: web community for neurodivergent people/professionals/family https: //wrongplanet. net/ Autism and Empathy Blog (Rachel Cohen-Rottenberg) https: //autismandempathyblog. wordpress. com/ Double Rainbow: Navigating Autism, Gender, & Sexuality Guest blog series on Bitch Mediahttps: //www. bitchmedia. org/post/double-rainbownavigating-autism-gender-and-sexuality-feminism Doodle. Beth. com (Beth Wilson) Artist Beth Wilson creates web comics about autism and other art “Ask Me! I’m an AAC user” facebook group: http: //www. facebook. com/groups/456220758119314/

Additional Resources: Hashtags #Neurodiversity #Autistic. Culture. Is #Autistic. Problems #Red. Instead #Walk. In. Red #ASDay #Neuroqueer #Stimdancing #Take. The. Mask. Off #Autism. Doesnt. End. At 5 #She. Cant. Be. Autistic #Do. ILook. Autistic. Yet #Autistic. While. Black #Asking. Autistics and #Ask. An. Autistic – used by both autistics & allistics to ask questions of autistics #Actually. Autistic – used by autistic people to talk about their personal thoughts and experiences of autism; search this hashtag to listen to autistics speaking to other autistics; do not use this hashtag to ‘use adult autistics as a resource’ or post unless you are autistic

Additional Resources: Podcasts The art of neurodiversity. (2018 Dec 16). All in the Mind. Australian Broadcasting Corporation (ABC) RN. https: //www. abc. net. au/radionational/programs/allinthemind/the-art-ofneurodiversity/9570646 The Singular Mind - A history of Autism in Australia. (2018 Dec 3). The History Listen. Australian Broadcasting Corporation (ABC) RN. https: //player. fm/series/the-history-listen-abc-rn/the-singular-mind-a-history-ofautism-in-australia After Effect from WNYC Radio (8 episodes) The story of Arnaldo Rios Soto, survivor of a police shooting incident https: //www. npr. org/podcasts/620029068/aftereffect This Podcast Has Autism Spectrumly Speaking

Additional Resources: Continuing Education & Videos FREE CE course (120 min) “Women and Girls” learning module from the National Autistic Society Learn about traits of “atypical autism” common in women in girls https: //www. autism. org. uk/professionals/training-consultancy/online/women-andgirls. aspx VIDEO: In My Language. Mel Baggs. https: //www. youtube. com/watch? v=Jnyl. M 1 h. I 2 jc

Citations Barna, M. (2017, June). Everything worth knowing about. . . Autism Spectrum Disorder: Many questions, few answers. Discover. Retrieved from: http: //discovermagazine. com/2017/jul-aug/autism-spectrum-disorder Choudhury, I. “Culture. ” Retrieved from http: //people. tamu. edu/~ichoudhury/culture. html United States Government Accountablity Office. (2016). GAO-17 -109 Report to Congressional Requesters, Youth with autism: Roundtable views of services needed during the transition into adulthood. Retrieved from https: //www. gao. gov/assets/690/680525. pdf

Contact Jessica Leza, MA, MT-BC email: jessicaleza@gmail. com Presentation will be available at Jessica. Leza. com “… work to make the world’s heart bigger …” – Sparrow Rose Jones, “T is for Toe-Walking, Trauma, & Truth-telling” The ABCs of Autism Acceptance