Written by Sarah, adult with ASD, Mi'kmaq and queer activist, writer, artist.
i spent the first twenty-three years of my life with a mother who kept me too scared and ignorant to venture off into the world on my own; so abusive that i had to hide every part of myself that didn’t fit the image she had of the daughter i should be. i hid it so well that her family didn’t believe me when i told them, that no one ever even noticed there was anything different about me, how hard i was working or how much i was suffering to keep up appearances. when i finally left, i was hospitalized within two months.
over the decade since, i’ve gone on to receive five mental health diagnoses, be hospitalized five times, attempt suicide twice, be prescribed seven psychiatric medications, live in three shelters, be raped, gain fifty pounds, move eleven times, have seven jobs, file for bankruptcy, apply to three college programs, go on and off social assistance and ultimately end up on disability only to finally, FINALLY, realize the cause for all this chaos last year.
i am a late-diagnosis autistic woman.
i found through research that a lot of womxn on the spectrum get misdiagnosed with borderline personality disorder, OCD, ADHD, depression and anxiety. i had been given all of these labels. i exhibit several classic autistic traits: i am unable to maintain a job or attend school on a set schedule. i have to use para-transpo because public transportation gives me sensory meltdowns (which i mistakenly thought were anxiety attacks). i have shutdowns and am sometimes non-verbal. my eating is disordered. i’m photosensitive. i have dyscalculia and struggle to manage money. i identify as queer. i have no close friends and the vast majority of my socializing is online. i have never had a serious romantic relationship. i have poor balance and coordination. i stim. i have a hard time using the phone because of auditory processing and sensory issues. i take things literally and am prone to being taken advantage of. i can barely go outside in the summer because of heat exhaustion. executive dysfunction sometimes prevents me from doing anything for weeks on end. social exhaustion keeps me isolated as well. i have sleep and digestive issues, and bruxism so severe i have a fractured tooth and receive physiotherapy for the pain in my jaw.
once i figured it out, i immediately started looking for resources and support, which proved nearly impossible. for example, most organizations only match autism service dogs to children and it would be necessary that i incur all subsequent costs for the care of the animal after a match, which i cannot do. i finally got my assessment by applying to Developmental Services Ontario, who say i am not eligible for their assistance because though i “require substantial supports”, the report demonstrated i do not have an intellectual disability. that closed the door to the Passport program from Ontario as well. when applying for a disability tax credit, i was told that despite my struggles in nearly every area of life, i am not “sufficiently affected” to qualify for it. i currently live in community housing and receive one thousand dollars a month from ODSP (including a community transportation pass and special dietary needs allowance). i don’t have any contact with or support from my family. despite my best efforts, i remain well below the poverty line, living in a dangerous environment, and unable to improve my situation or my quality of life.
TIPES has been the only positive in an ocean of endless failures and rejection. they are the only ones who have taken me on, helped me advocate for myself, pursue resources, appeal refusals and have my voice heard, and who understand someone like me.
while calling clinics for an autism assessment, i was quoted several hundreds of dollars. i asked one receptionist if there were payment options for low-income clients. she told me that there were none, because they had never gotten any. her reply was final and dismissive, as if it was an unchallenged truth that everyone has a family who will pay, fight on their behalf, drive them to endless appointments, and continue to support them into adulthood.
i hope you will take away one thing from my story: poor and unsupported autists exist. we struggle and try to function in a neurotypical world until we fail because we cannot always speak for ourselves, articulate what we need, or navigate endless bureaucracy. we are invisible, until we reach a crisis point. i saw first-hand where we end up because i was there myself. we end up homeless, or on psychiatric wards. the end of the line, socially. because no health professional thinks to look for autism in adults, much less in womxn, even less so in people living in poverty or without family. i managed to fight my way out, exposed in the process to things most people never see outside of movies. things no one should ever see, let alone a vulnerable person who is scared, and alone, and overwhelmed, and just needs to feel safe.
if there exists a net somewhere, to catch those of us who do fall through the cracks in the social and health care systems, i have yet to find it. i am tired of fighting. i’d like a soft place to land, to rest, for once. for once, i’d like to be caught.
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