Monday, August 5, 2019

Hello my name is Robert Butler and I am age 56. I was diagnosed by TEACCH at age 40. I'm proud to say I am the first person who got a diagnosis of autism from a (self referral) at TEACCH in Chapel Hill, NC USA University of North Carolina -- yes, where Michael Jordan went to college.

I am legally disabled since 2004. I currently live in a very nice low-income apartment building with 37 residents. I am content with my life although since December of 2017 my health has been poor due to aspirating stomach fluids into my lungs which more of less killed me. I ended up on life-support and in an induced coma. After I awoke I was told I was a miracle since it was a miracle . My family was planning to take me off life-support and even took my "last picture".

You might be surprised I traveled on my own in the United States east of the Mississippi River and in Texas, Arkansas, and Canada from Toronto, Niagara Falls east to Prince Edward Island and Nova Scotia..

My biggest accomplishment has to be graduating college with Magna Cum Laude honors in Therapeutic Recreation. While in college I was involved in the Student Senate one year as their Events Board Coordinator.

I don't know about changing the world but I hope I can make a difference in people's lives now a an Autistic Advocate..

What I hope NT's and Autistics to know is that other than to protect our children from self-abuse and the harm to others our autistic children have the right to grow in this world without being told to stop being different or even made to be different (ABA).

Getting help :: Well other than the autistic support group which I started I have never been given help although I had a Personal Assistant who made me feel more comfortable socializing than anybody ever has. Growing up I wish I had speech therapy because I am monotone, have a flat affect, and lack body language.

I have had many silly/awkward events. The first silly event that ever happen to me was at the Boy Scout Halloween Costume Party. I don't know what got into me but for some reason I let loose and without a question was the funniest I have ever been in my entire life. Yes, I won the funniest award that night. .... Awkward? This is probably not my most awkward moment but I always remember it. One day riding my bike a saw a pretty girl walking towards me. When we passed each other I continued looking back at her. Before I knew it I rode right into a telephone pole..

 I don't need to be an advocate to hope you all learn to become content (to have peace of mind). Most of my life I was angry and depressed. I even felt I needed to feel this way because it made me feel that what was done to me was wrong and I had the right to feel angry and depressed. Well finally I don't know if I learned this was only harming me or my body got to the point of being so stressed that it just gave up itself..

 The only person who thought I was "Special" was my supervisor at my last full-time job.

After my diagnoses? I got into a car accident the next day on my way to work. No one was hurt..As to compare with others after my diagnosis. Heck, I went around telling everyone I am autistic. It was the others who didn't believe me. Initially some things were hard yet my life was hard before my diagnosis and ever since. I have learned to be content. I no longer beat myself up about everything.

Obstacles? First was school and socializing with these strange kids, then my parents divorce, years of sexual abuse as a pre-teen, imprisonment during my teen years, to live as an outcast once I returned home, my attempt at suicide living with a mean step-parent, using alcohol and finally drugs to cope, gaining lots of weight during my college years, being alone here in Raleigh because my cousin who told me to come stay with him and his family until I find a place complete flipped and told me minutes before I traveled from my home state of Maine to North Carolina where he lived. Once here in Raleigh, NC I struggled holding jobs because I always start out slow anywhere I go but once I settle down I actually tend to accomplish much more than the average co-worker. Unfortunately "my first impression" causes my boss and others to carry a negative impression of me and that is despite any good I would go onto do. That has lead me to get a judge to claim me legally disabled. Since then life has continued to be hard yet thank God I am content now.........................Since December of 2017 my health has been very poor yet I give thanks and praise to God that no matter how much people have used me and abused me my true identity has never changed.......I am that strong!
27, from UK I’m coming to the end of a masters degree. Yes, I enjoy it though it’s a lot of work. Something someone would be surprised to know about me: I’m not sure. I taught food security over in India for a month several years ago and loved it. In my opinion my biggest accomplishment thus far is:Completing my undergraduate degree with a first, dancing on stage with others… There’s plenty I want to change about myself! I don’t think there would be enough paper to cover all that! Changing the world – I think I’d want more peace, more acceptance of others, more respect. I wish others NOT on the spectrum would understand That what you see isn’t always what you get. Not to write people off based on what you perceive or observe about them. That sometimes you need to listen in different ways. That communication isn’t always verbal. That difference is okay. That autistic people are not less than or stupid, they have their own talents and strengths. Biggest supports were: People taking the time to listen to me and having the patience to stand by me. Often autistic individuals have been through a lot of trauma, so will be naturally more defensive. People that stuck by me and showed me that I could trust others have probably helped the most. Practically, those who have taken an individual, person-centred approach – thinking outside the box – have worked best. Those who work with me, around me, not just with the system. Also, acknowledging that me not attending, say, lectures, wasn’t due to laziness or because I was skiving and sending me notes etc, giving me an equal opportunity to learn. What I want to tell fellow autistics: It is okay to like yourself and don’t see yourself as being defective. Embrace difference. Like (or even love) yourself. I know autism comes with a whole host of stresses – and the world does through lack of understanding etc – but stick with it. You deserve compassion, understanding and kindness. My social worker suspected I was on the spectrum when I was 22/23. I mean, at 14 I ended up in hospital and it says “social difficulties” or something on my notes/discharge letter but autism wasn’t suspected. Perhaps it wasn’t known about in my ways of presentation back then. I think my social worker suggested it because she realised that there was something additional to trauma that was going on. If she was late calling me, for example, even by a minute, I would become extremely distressed. Change was difficult for me, I over-thought in every social situation and I had high levels of fatigue. I also had eating difficulties that didn’t fit the ED-services mould. When I first received my diagnosis I felt: It was a lengthy process. There were feelings of grief, anger towards others that I was missed, anger and hurt at all that I’d gone through and how understanding could have changed my life. I suppose I’m replying with hindsight… but I think initially I thought that having the diagnosis was proof I was defective or deficient or wrong in some way. Today I feel about my diagnosis: That perhaps I’m not evil. I still feel useless and defective sometimes, but I’ve come a long way. I am more assertive now and surround myself with healthier people, which helps me not see myself as so ‘wrong’. Sometimes I am glad of being autistic, sometimes I wish I wasn’t. I still feel grief and anger, but perhaps less than I did. I’m not sure if being diagnosed would make a difference if people still didn’t understand. I self-harmed and attempted suicide due to feeling evil and knowing I was wrong. I tried to change everything about myself to ‘fit in’ – starvation, purging, speaking certain ways, wearing certain things. Maybe I’d have accepted myself a bit more had I have known. Maybe my friendships would have been more successful as I had mental health issues as a result of being invisible and neglected in the system. Maybe professionals would have been less likely to get frustrated or tell me everything was my fault (the world told me that) and would have just helped me with my different way of processing everything. Maybe I wouldn’t have been so tired and had a burnout for so many years due to the strain I was under for so long. Obstacles I overcame: Quite a few! I don’t really want to go into anything too personal because those experiences are mine but I have been through different experiences of trauma. I became very defensive, suspicious of others and I had anxiety/panic attacks and flashback effects as a consequence. I self-harmed in order to cope. This is less now, though I am not immune to these things. Now, I try to dance or run or go for a walk to help. I am more pro-active in my responses. I make better choices in people I surround myself with. I am beginning to accept they might like me for who I am. This is a long process. Just having someone – and I have had a few people – believe in me, made such a massive difference. I was lucky to have that.

My name is Chris Whelan, I’m a 27 year old diagnosed autistic man from Fort McMurray, Alberta.  I am a registered social worker operating as a case manager in the Housing First program, and a co-founder of Neurodiversity YMM; a collective of neurodiverse (autistic, ADHD, OCD, dyslexic) self-advocates supporting each other in our city.  I’m the proud dad of a lovely and affectionate cat, a big fan of science fiction and futurism, a transhumanist, and a computer gamer with my favourite games being Factorio, Satisfactory, Overwatch, and Stardew Valley. I have been living independently for the last two years.

I learned that I was autistic at age 25, at the end of a long, dark period in my life.  When I moved to Calgary, alone, to begin university I was given a wonderful condo to live in by my parents.  But just weeks after the last time seeing my parents, I suffered mental health shutdowns. I was unable to connect to the people in my classes, and my university had no clubs for my interests.  That means that introverted, shy, and unbeknownst autistic Chris could not make friends and felt unwanted where he was. I began to shut myself indoors, playing Xbox all day and night, staying up all night until 7 in the morning, and eating whatever could be microwaved in two minutes.  I stopped answering my phone, and I ignored my family’s attempts to contact me. For weeks I would go without brushing my teeth, and I drank two litres of soda a day. I skipped my classes, sometimes for weeks. I couldn’t keep up with the new material being thrown at me in university and my studies lagged behind.  Finally, I began to self-harm by cutting myself as a form of release. During this time, I thought I had failed a “life test”. University, particularly September, was supposed to be a time of partying, making friends, potentially meeting the love of my life, and enjoying my newfound freedom as a real adult. Instead, I was eating microwaved noodles alone with no friends in an unfamiliar city.

For years I would call this “depression”.  Now looking back I understand that this was all due to an autistic person being removed from their environment.  The video game addiction, the two litres of soda a day, and the self-harm were coping mechanisms to deal with the unfamiliarity of my environment and being cut off from my social supports.  Locking myself in my apartment all day and not reaching out to my family for help was due to too much unfamiliar stimulus limiting what I was capable of doing every day. I stayed up all night because that was the time when there was the least amount of light and noise; and I could finally feel some comfort.  I could not make friends because I could not follow neurotypical social norms and struggled to take cues. None of this came up before because public school, up until that point, was seeing the same people every day; the same people I had seen five days a week since my family moved to Fort McMurray when I was 9 years old.  The classes were structured and flowed from one subject into another. There were extracurricular clubs and school social events where everybody knew everybody and we could explore new interests together. All of this was thrown out overnight by my moving to Calgary and starting university life.

During this time all of my social activity was online.  I was very active on Gaia Online and later on 4chan. Here I could tap into a world of people very much like me; isolated, into weird interests, and phenomenally bad at socializing with others.  I became obsessed with my online image: I wanted to be noticed when somebody saw my username on Gaia Online so I spent over half of my day responding to every thread I could fine; anything that I could provide commentary on.  After years of doing this I realized that nobody actually cared, nobody was noticing me despite all the work I was putting in to build an online image so I just stopped, and my addictions were probably at their worst at this time where I felt invisible online and offline.

Then 4chan came into my life, where nobody has a username and your relationships you make with people last until the thread you posted on falls off of Page 15 and into the archives.  It is a breeding ground for radical ideologies of every stripe due to the lack of accountability for what you type, and this was a terrible place for somebody in a low point of addiction and isolation.  I was indoctrinated with some terrifying and violent worldviews that took a whole lot of painful work to overcome, and that I’m still occasionally finding residue on my thought processes from. My worldviews became very racist, sexist, and angry.  And that feeling like I failed at life because of my lack of friends and socialization turned into anger at groups of people that did nothing to deserve it. The anger at these groups of people became another addiction, and it was one that I became entrenched with for a long time.

I did graduate from university and earned my Bachelor of Arts in Criminal Justice, although with a pretty abhorrent GPA that was far lower than my capabilities.  I moved back in with my parents as they had moved to Calgary themselves, and we all lived together for a few years. I worked as a security guard for a while, but could not get work beyond entry level positions.  

I eventually went back to school for social work, using references from a drop-in centre that I had worked as a security guard at.  I was placed in a nearly all-female, all-feminist graduating class who had little patience for the racist and sexist ideologies that I carried with me, and frequently challenged me on my beliefs.  Professors as well did not initially take kindly to my ideals, and I had been asked by two professors to change my major as the profession of social work was in opposition to the ideas I carried. However, I had already spent four years writing academic essays, and my aptitude for arguments within my papers in favour of the material my professors presented was beyond question.  I could write fantastic essays in favour of anti-oppressive practice that my personal addictive anger fought back against in private. Again, I could not integrate myself with my peers, but my addictive coping mechanisms caused me to be a stalwart individualist and take pride in my independence from others.

But in the spring of 2017, in my final practicum placement, I could not endure rapid change any longer.  My practicum placement had me going to new, unfamiliar locations every day and I was unprepared for what each day would bring.  Every day on this job wore down on my resilience, and my ability to cope. My anger at the world had burned itself out, and no longer provided relief.  Self-harm was on my mind again, and this time, it came with ideas of suicide. I had been feeling like a failure at life for seven years at this point, and was approaching my 25th birthday, still feeling unwanted, still feeling unaccomplished, and with a desire to just escape everything.  Killing myself was going to be that escape. I had two near-attempts in March of 2017, and after the second one, my family found out.

After the first near-attempt I had been diagnosed with ADHD and been put on daily medication which changed my behaviour.  Not in a positive or negative way, just I was not “Chris” anymore. My thoughts became very practical. I was very productive.  But I was uncreative and not interested in the things that gave me joy before. When my family found out that I had been taking ADHD medication, and that I was suicidal, my mom told me something my family had kept from me for most of my life.  

When I was in grade 5, I was given a diagnosis of “Aspergers Syndrome”.  I had been tested for ADHD and other neurodivergent conditions by provincial experts, and the only positive diagnosis was what was known as “high-functioning autism”.  The doctors gave us referrals for supports for auditory processing, which included extra time for completing exams, but nothing beyond this. My mom said that my family had not told me because they did not want me to feel different.  They did not want me to be stigmatized, and especially not to stigmatize myself. My mom believed that I was capable of anything, and that if I labelled myself as an autistic person then I would limit myself in self-diagnosis of what I could or could not do.

March 2017 was the month the old Chris died.  I survived a suicidal meltdown, but I began the process of killing the old Chris that had lived in anger and addiction, and became a Chris that loved myself, loved the world, and was a positive, empathetic person.  I began to see my own gifts, and that these gifts were not developed in spite of autism but because of it. I began to listen to the feminists that had berated me for my hateful ideas, and listening to them helped me to conceptualize how my hate had been what’s called “internalized oppression”, where a person who is forced to live inauthentically because they want to mask themselves and pass for a “normal” person, takes their emotional pain out on others.  I am proud to say that I have been living authentically for two years now, and no longer live with the emotional pain of masking and being inauthentic.

I moved back to Fort McMurray, my hometown, to start my first job as a Housing First social worker in May 2017.  My family was understandably cautious that I would isolate myself again, and go down an unhealthy road once more.  This time has been different; I love my job and I feel like my work is important to my community. I feel necessary.  I feel like I belong where I am.

I am angry at the world again, but now it is not anger directed at people but anger directed at our living conditions.  I could have lived a happy and healthy lifestyle from age 17-25, if I had been given adequate social supports and if there was no stigma attached to having a neurodiverse condition.  I believe that this is a healthy anger. There is anger that causes discord and division between people, and anger that brings people together to make a better world. For the rest of my life I will do what I must to avoid the former, and everything I can to incite the latter.

My newest project, Neurodiversity YMM, is an effort to show a model of a healthy autistic and neurodiverse community: unashamedly proud, living authentically, and in supportive solidarity with each other.  The gift of an autistic perspective was denied from me for many years, because the world was going to stigmatize me and tell me my accomplishments would be limited due to autism. We are here at Neurodiversity YMM to show our community and the world that there is no basis for stigma against autistic and neurodiverse people.  Together as a community of neurodiverse self-advocates, we will combine our voices together to push for adequate social supports for us based on our individual needs, so that we all have equal opportunities for health and success.

I am 18 and I’m from Kentucky, USA.

I’m currently a college student studying neonatology.

I love to help people, play my musical instruments and watch tv/YouTube.

I like my current lifestyle right now and would not like it to change.

Most people don’t know that I’ve been gifted in music vocally and instrumentally since I was around 7.

My biggest accomplishment is making it through high school. I really struggled with bullying, grades and more so to finish high school was a big deal to me. I would like to be able to focus harder on subjects that I struggle with and be more organised.

I wish people without autism knew that it doesn’t change who I am. Just because I gained this diagnosis doesn’t mean I’ve changed. It doesn’t make me stupid or “special” it makes up my personality.

I’ve benefited from speech therapy ( before I even had a diagnosis), physical therapy( also before I had a diagnosis), and occupational therapy.

My most awkward and silly story is the time I did not like this one boy in elementary school so me and my mum agreed that I should change schools because he would distract me and the teachers didn’t seem to care about that. I went to this new school the next year super nervous and the first person I see when I walk in is the said boy who would distract me. Apparently he didn’t want to hear me complaining about him distracting me any longer so him and his mum decided he would move schools.

My words to anyone else on the spectrum is that don’t see it as a major problem in your life, see it as just something that makes you stronger. It has personally made me have to try harder at certain things so I tend not to take things for granted.

My parents knew that I struggled with playing with other kids because I didn’t want to be near the other kids to share other them my belongings and it made me anxious. Towards my early teen years I started to have personality problems because of masking for so long which caused me into a state of depression. I knew something was up personally but I didn’t want to have a hovering title above my head at all times. My friends started to notice burnouts frequently and I decided on my own to see a school psychiatrist. The school psych at first thought it was just anxiety but that is because I didn’t notice that I was masking. Then he gave me a test after me continuing to struggle day to day to figure out what’s up. It came up that I have Aspergers. We were both surprised. At first I thought it was a mistake so we went over my answers again and when reading it allowed I kind of had an epiphany that I actually do have Aspergers. For a whole week I didn’t want to accept it because I didn’t know much about it except the stereotypes. But after watching a ton of videos I realised that it’s true and that I need to tell someone else.

I’m happy I know my diagnosis now because now family and friends know that meltdowns aren’t me being spoiled ( what they told me after I got diagnosed), they also know that burnouts when with people isn’t me not wanting to be with them it’s just been a lot for me to deal with. If I didn’t have my diagnosis I could possibly still be struggling majorly with my personality issues and even with suicidal tendencies. Going through my whole childhood without my diagnosis makes me often wonder how others can go 20-50 or more years without knowing.

I struggled just with my childhood not knowing so I struggle to believe that there could still be people in there 40’s even that don’t know they’ve got autism. I’ve faced many obstacles in my life. Some of them are suicidal tendencies, extreme anxiety, meltdowns galore, and personality issues( not understanding who I even am anymore). I would love to change the worlds beliefs that all autistic people are the same and that females can’t have it too. I would also love to stop the horrible autistic kid memes.

Saturday, July 13, 2019

Part 2 of 2

I didn’t have any support for my Autism or ADHD from anyone—I suspect that when I was a child the Ohio public education system didn’t have to find the money to educate a disabled child if they didn’t do anything which might help identify a disabled child who needed help getting diagnosed with a disability.
The only thing that really seemed to help stabilize me was music. At age 10 I discovered that I had a talent for learning instruments. After I joined band and started to learn the clarinet and how to read music, I taught myself the flute, saxophone, and oboe; I wanted to learn the bassoon and go for the whole woodwind family, but my high school director couldn’t spare such a valuable instrument.
Music helped me find my hyper-focus, and I could practice for hours just working on the comforting physical rhythm of my fingers moving up and down the scales. I even earned the rank of solo clarinet in the All-Ohio Sight-Reading Band—I could play a piece of music at first sight better than nearly anyone else in my age cohort. I thought I had finally found my place.
Unfortunately, when I tried to major in music performance my ADHD-addled brain couldn’t handle all the other parts of music, like theory and sight-singing. Then when I turned twenty years old, I noticed that my hands weren’t responding as quickly as they used to; pieces which I used to play with little strain became frustrating challenges. I had no idea that my problems were neurological, and honestly, I don’t think any practicing psychologist at the time could identify an autistic female. I had to shoulder the shame and blame of flunking out of music school because no one looked past the easy answer which was that I was a hopelessly scatterbrained, mediocre hack who peaked in high school.
It took a long time to accept that music and I had to live in different worlds, but I still love to play when my brain and hands can support it.
Regarding awkwardness, I think the most awkward event in my past is that I am a walking Exhibit A of the utter indifference or incompetence of nearly every counselor and teacher I had K-12.
I know my parents, school counselors, and teachers all knew that there was something seriously wrong with me. I was Weird with a capital “W”. I was blazingly socially unaware, hilariously gullible and trusting, and completely overwhelmed by the chaotic school environment. I was the Weird, fat girl always having sobbing tantrums and emotional collapses daily, but the advice of the counselors was always to find the students who always had their work done, and who everyone liked, and just do what they do. I think this is from the “nurture” school of psychology that some children were born socially deaf and blind, but social language and behavior was something that a person could learn through observation and mimicry, and then everything would be fine.
I think that’s why no one ever stopped the daily physical assault I endured in 3rd and 4th grade while my classmates played the charming game of “Jacqui Germs” which was about as fun for me as a round with a cat-o-nine-tails. “Jacqui Germs” required the girls to slap and punch me to vaccinate themselves against the icky boys—and the boys to inoculate themselves against the icky girls. “Jacqui Germs” eventually lost its appeal, but its lesson remained: I was literally the worst thing anyone could ever have to endure.
Concrete thinker that I am, I reasoned that because no one in a position of authority stopped the assaults that meant that the teachers and school aides condoned the action. I deserved it, and if I would just stop being So Weird and be like everyone else the children would have no reason to hit me.
If being myself caused others to hate me, and that in turn caused me misery, then the school counselors were right: I needed to change who I was.
Between third and fifth grade I started to eliminate and change everything about myself; I modeled myself after the android Data on Star Trek: The Next Generation, a character challenged with learning about social behavior and expectations the hard way—just like I had to learn. I practiced a perfectly blank expression until I eliminated outward emotional expression.
Vocal inflection was (and still is) a challenge; my tone of voice has always gotten me into serious trouble at home, school, and work—back when I could work. Unspoken social dynamics mean very little to me; I can’t automatically adjust my voice’s volume and pitch to reflect the nature of my relationship to other people in the conversation. But Data spoke the same way to everyone—and so I practiced Data’s perfectly measured, emotionless speaking cadence, volume, and inflection until I could speak without inspiring violent rage in my father, a man who was determined to beat the Weird out of me.
By eighth grade I had a completely different personality; though my classmates were still cruel, their hatred was less visceral and more like a habit which still amused at times but was starting to feel a bit played out. When my family changed school districts in the middle of my eighth grade, I thought I had I chance to start fresh because I had finally destroyed the clumsy freak and buried its corpse deep in my brain. (By the way, parents: don’t do that to an Autistic child. Ever. Work it out so the kid can at least finish the year in the same school.)
However, that freak is who I really am. Now my brain is so exhausted from 30 years of painstaking observation, mimicry, and masking that everything bottled up is coming out in very troubling and unpredictable ways. If that isn’t awkward, I don’t know what is.
But life isn’t all bitter memories—I think Autistics are in a powerful position by sheer numbers to demand big changes in the United States; I say this whenever someone says “oh, isn’t everyone a little Autistic anyway?” and I point out that this world would be a very different place if that were true. No society designed and run by Autistic people would be so utterly half-assed at everything that Autistic people need done consistently and well. No Autistic person can hope to have the one thing we crave—stability—when living a nomadic life of chasing Autism services around the country, trying to slide in under a discriminatory age barrier. This is the definition of inhumane. This must end.
American Autistics like me are going to have to get very vocal and about demanding some form of national Medicare to cover all Autism-related healthcare and disability accommodation for life. This will require mobilizing tens-of-thousands of people to demonstrate—like in the 1980s for the Americans with Disabilities Act—and to get ready for an ugly fight. A no-rules fight. The kind of fight where ableists use social media to get horrible hashtags like #notrealpeople or #euthanize trending. That kind of ugly.
But honestly, what other choice do any of us have? Leave things as they are and convince ourselves that “it’s better than it used to be.” Well I say, “to hell with neurotypical mediocrity—we deserve a better life than this!”
As a female, Autism has a different expression than the male stereotype; an expression which evaluating psychologists are only just starting to use when evaluating a female patient. I was long, long past the point of getting the help I needed when it could have done the most good when Facebook introduced me to Robert, a young man from Wales who also shared my obsessive interest in the animated program Archer.
I didn’t know he was Autistic until he posted a meme (memes are one of Robert’s Special Interests) about the unique ways Autism can manifest which aren’t part of the stereotype; the one that shocked me was about sock seams. Horrible, horrible sock seams. The Seam of Suffering. My old foe—the battles I would give to avoid wearing the abrasive socks my parents bought with those massive, agonizing seams that made me scream in pain and fear. This stunned me; I thought everyone screamed in pain at the rubbing seams of awful socks, but I couldn’t remember why it stopped being a problem. Was this part of my personality makeover? Was I so scared of my dad “giving me something to cry about” that suffering in silence was preferable?
My head spun as I realized I had a huge hole in my memory—what had happened? And how did autism come into all this? According to those news programs my grandparents watched Sunday evening, Autism was sitting in a corner, rocking back and forth. Autism was playing a piano concerto perfectly at first reading or drawing cityscapes from memory. Autism was screaming kids wearing helmets, strapped down to their beds to keep them from wandering off, or old people with vacant eyes who spent their whole lives in the care of the state, shuffling silently around a locked ward. I wanted nothing to do with this, but the genie was out of the bottle. I had to know more.
Robert was amazed that I didn’t realize I was probably Autistic—he’d figured it out long before through nothing but our rapid-fire, word-for-word recitation of whole scenes of dialogue in Archer and The Simpson’s. The kind of recall for which Autistics are legendary.
I scoffed and said there was no way I was autistic because everyone knew that only boys have Autism. Over the years counselors, psychologists, and psychiatrists diagnosed me with Depression, Obsessive-Compulsive Disorder, Anxiety, a smidge of Multiple Personality Dissociative Disorder, an Electra Complex, and even had one therapist suggest that what I needed was a good screw—but not once had anyone ever said anything about Autism.
Once I started to dig into it, it was like falling down a rabbit hole: walking on tiptoes; unusually intense interests; food avoidance; social ostracism by other classmates; a desperate need for control and stability; extreme reactions or underreactions to sensory input; explosive, uncontrollable reactions to emotions I couldn’t understand; spinning, spinning, spinning on the chairs at my dad’s office; calming myself down by rocking and swaying to music; pulling hair—eyelashes, eyebrows for the brief twinge of pain, and then the soothing pleasure which followed.
As I learned what the Autism Spectrum is, versus what is sufficiently comedic or dramatic for the purposes of Hollywood, I realized this wasn’t a rabbit hole—this was now a Neo-Meets-Morpheus, “what if I told you…?” red-pill moment that ended in a hollow, betrayed feeling of “how the f*ck did no one see this? Was I that unimportant, even to the people in schools whose entire job is to find kids who have a disorder or condition?”
Upon reflection, I have to say that I either wasn’t that important to anyone who had a chance to make a difference when it counted the most, or I needed someone who understood what they were seeing, and that certainly wasn’t the anyone in the employ of an Ohio public school.
After hearing the diagnosing neuropsychologist say the words “you are on the Autism Spectrum” my first feeling was surprise. After my assessment I spent the ensuing weeks telling myself that there wasn’t a chance I would be so fortunate as to have a good reason for being such a dismal failure in life. I knew I fit much of the diagnostic criteria, but would the neuropsychologist also figure that out? And just how much of the diagnostic criteria was necessary to make the jump from “neurotic head-case” to “Autistic”?
My friend Robert insisted that if even half of what I described was true, there was no question that I was Autistic. Even so, I pointed out that if no one cared about my difficulties back when they were obvious because I didn’t know how to hide them, why would anyone care now since I had learned how to fake normalcy? After all, who would ever know the difference if even I didn’t realize I’d trained myself out of necessity to override my natural, Autistic thought process and instincts with an unnatural, learned set of behaviors?
But while the Autism diagnosis wasn’t entirely a shock, the diagnosis of combined-type Attention Deficit Hyperactive Disorder was a total surprise. I just thought I was scatterbrained and probably a bit below average intelligence since I needed so much more time to learn a new concept or to get anything done.
I’ve had about six months now to digest all this information, and upon reflection I am honestly amazed that I am still alive. Now that I understand that some or most of my spectacularly bad judgement comes from a brain not firing fast enough to get that life-saving second thought to the front of my mind before my very fast impulsive thoughts become actions, I realize that I have been very, very lucky. As I said earlier, if most people understood the destructive nature of ADHD, more people would be clamoring for better treatment.
With no diagnosis I took on every criticism as an assessment of my value as a human being, every insult as fact, every failed attempt at friendship or romance as a reminder of the obvious: I was a biological error. A mistake. Or possibly, with my terrible coordination, utter lack of charisma, and unattractive physical appearance—perhaps even literally cursed.
According to everyone who could have helped me, there was nothing wrong with me that couldn’t be fixed through a little hard work and perseverance on my part. Even bullying was good for me because there was just so much wrong with me that I couldn’t possibly remember all of it; derisive laughter at my expense was a warning that the clumsy freak was closer to the surface than I realized, and I should be glad that someone cared enough to point it out in a memorable way.
Without question my most consistent obstacle is bullying: no matter what, no matter where, bullies will find Autistics. We are The Other, and our entire society stands by flushing out and eliminating The Other. I know from decades of experience that I am a satisfying target, being tall, unattractive, incredibly gullible, and very easy to work into an ADHD meltdown, or a dissociative Autistic shutdown.
How have I gotten through them? Well, mostly the man who became my shelter through all this: Kristian, my fiancé. But I must also give credit to luck for playing a huge part in even getting me to a place where our paths could intersect.
Not everyone is so lucky as to have the embodiment of their misery drop dead, but my mother’s second husband was the worst bully I’ve known to date. I won’t lie about how I feel—my life became so much better once that man was dust in an urn. The agony I endured from his forced eye-contact lectures, his rages at me for hints he dropped that I missed, his demand that all my “odd” (stimming) behaviors end immediately, his constant and very real threat to kick me out, among the many other horrors I endured, truly nothing else in my life has been quite as cathartic and liberating as seeing him brain dead after an unexpected seizure. I do still have nightmares about him though, so his damage lives on.

In time I hope it will fade.  

Part 1 of 2

My name is Jacqueline Schumacher; I am 38 years old, and I was born in Pittsburgh, PA. I grew up near Cleveland, Ohio, and currently I live near Phoenix, AZ
I do not work, and I am not looking for work, and that’s an interesting distinction from being “unemployed” which I learned about in an economics class (minor special interest of mine). The last time I had a job was 2013; then in a period of extreme stress for my family I crashed and entered burnout. Of course, I didn’t know what had happened, and neither did anyone else. I just couldn’t function anymore in the one metric which our society uses to measure the value of a person: the capacity to do work.
My masking endurance just isn’t what it used to be, and I can’t mask much at all anymore; that makes me de facto unemployable despite what companies say publicly about supporting a neuro-diverse workforce. I’ll mask for the sake of the relationships I am desperate to keep, like university acquaintances, friends, and family, but once I am alone again, I shake and sob from the effort.
Before I finished school, my campus therapist suggested that I apply for disability and Medicaid; I don’t know if her suggestion was some tacit acknowledgement that I don’t have the executive functioning necessary to hold a job equal to my education. I suspect that it was, because my executive functioning is mercurial—honestly, just typing up my story here now has taken a lot of personal cheerleading to get myself ready for a task requiring concentration and coordination
I don’t know how the Social Security Administration sees the situation, though. I doubt they are very understanding—even their own website warns that diagnosis of a disabling condition is not enough to get disability. That is bad for someone like me, but I suppose this is part of the whole medical model of disability—take these pills, walk it off, and get back to work.
Something surprising about me is that I also have Attention Deficit Hyperactive Disorder—Combined Type (ADHD), and I hate it. Hate it with every breath in my body; if an experimental brain implant or CRISPR gene editing to eliminate ADHD were ready for human test trials, I would beg, borrow, or steal to become a volunteer for the treatment. If neurotypical people had any idea how debilitating ADHD is—especially regarding regulation and control of emotion, impulse, and motivation—I’d bet that that’s the neurological condition humanity would try to eliminate, and not the Autism Spectrum.
The neurotypical person can’t fathom how extraordinarily freeing it is to have nothing hindering one’s executive functioning, which is the most basic societal expectation of a competent adult—the ability to know how to plan and execute intentions consistently and without procrastination or repeated reminders. Or how fortunate they are to be able to take rejection without collapsing into a shaking, sobbing wreck because their world doesn’t crumble to dust from Rejection Sensitive Dysphoria. Or how wonderful it is to see food and think “I’ll have a little bit” and indeed only have a little bit, because that was enough.

None of this is possible in the ADHD brain:
Eat that whole pizza! Go for it!
Have sex with that guy you just met! Go for it!
The light’s yellow—you can make it! Go for it!
That huge project is due Monday, but it’s okay! You always do your best work at crunch time! You’ve got this!

And yet the neurotypical’s ADHD stereotype remains a disruptive little boy who “just needs some firm discipline.” Which is a depressingly expected response from the neurotypical; beating and berating a child into compliance has such a sterling record of success, after all…
Yet for all my struggles—somehow—I managed to complete a Bachelor of Science degree (cum laude) from the University of Arizona and achieve the goal which eluded me for twenty years: finish a baccalaureate. I try to not compare myself to students from my grade school days, but realistically that is not possible. I am simply too self-aware to not realize that the expectations and dreams I had when I graduated from high school could not overcome the poor choices I made because I was an undiagnosed Autistic with raging, untreated ADHD, and the odds of unsupported success were negligible.
However, I still have dreams and goals—they are just not the same I had as when I began adulthood. My degree is Animal Science: Racetrack Industry Program—Business Emphasis, and I want to get involved with horse racing marketing and promotions. Horses are my first special interest, and my greatest—I love racehorses, racing history, wagering, how tracks work, and as with most other Autistics few things are as enjoyable as talking about a Special Interest.
Of the many aspects of Autism which the neurotypical population does not understand, I wish the physical toll Autism takes from the body were better publicized—especially the strain on the heart. Also, that Autistic Masking is more than just acting neurotypical; it is anxiety and hidden stimming like teeth grinding and jaw clenching. Masking is about normalizing the unnatural and for the benefit no one. An Autistic can no more learn to behave like a neurotypical than a neurotypical can learn to behave like an Autistic.

For my personal situation, the worst physical aspect is the gradual breakdown in fine motor control and dexterity because my brain doesn’t talk to my hands as reliably as it used to. Typing has become more difficult, and I’m worried that soon I won’t be able to drive safely or play a musical instrument anymore.

Monday, July 1, 2019

My name is Julie and I am 25 years old. I live in Liverpool, Texas; but I grew up living in Santa Fe, Texas. Growing up my mom didn’t tell me of my diagnoses because she didn’t want anyone to put me in a box and for me to feel less than. So, I grew up struggling to do the basics like communication and activities where I would have to use hand eye coordination and gross motor skills. I fell behind most of my peers and I would find myself feeling overwhelmed and over stimulated. When I was 18 years of age, I was going through depression where mentally I felt like a monster due to my sensory meltdowns becoming so bad that I could not handle even going to the grocery store alone. I told my mom that I wanted to be tested for Autism because I felt like that diagnosis could explain basically my whole life. 

She sat me down and told me that when I was born that I was born with an extra chromosome and that I have a chromosome disorder. She also told me that later I was then diagnosed to have both Sensory Processing Disorder (SPD) and Autism (ASD). At first doctors told my mom that they believed that I was MR (mentally retarded) due to me not being verbal. I didn’t start talking full sentences and full conversations until junior high and high school. People just called me shy. My mom fought against the school district and she won. She told them that I was capable to achieve so much more and for them not to put me in special education. So, from kindergarten on up to high school I took regular and even advanced classes. Doctors then realized that I was not MR and so then they diagnosed me with Asperger’s syndrome which today it is now considered Autism all together. Asperger’s simply meant that I was “higher functioning”, but I prefer to use the term “more independent and needs little assistance”. 

My diagnoses were never put into my medical records or files due to my mom not wanting it to be in my records when I was diagnosed. She believed that it would make my life so much harder. What she didn’t realize was that by not having it in my records that I am actually autistic, it has actually made my life so much harder. I cannot be protected by ADA because my disability is not in my record; and as an adult who is looking for a job it is easy to be rejected because I can’t communicate as well as most. There have also been so many times when I have been abused or taken advantage of in a workspace environment and I could not do anything about it.

Now I am trying to get a diagnosis as an adult. It is so hard to find a doctor who will diagnose an adult with Autism because most of the tests or requirements have only been done on children. What most people don’t understand is that autistic children grow up and become autistic adults. I wish that there were more resources for adults with autism. I wish there were clinics and doctors who would realize the need that there are many adults who go misdiagnosed as having mental illness but in reality they are just autistic. 

My autistic meltdowns are so bad as an adult and especially when I was a child; but the difference is that I am an adult and I can’t just fall to the floor and scream or hit myself in public like when I was a child. When I was a child I could meltdown and people would just think I was having a “temper tantrum.” I never learned how to regulate myself enough to calm down. I wish there were sensory centers where adults could go to take a break from the crazy chaotic world. A place that is safe for adults who need to meltdown but in a healthy way. 

I want to create a sensory center for adults with disabilities such as Autism. I want to create a place where people like me can learn how to communicate better verbally, perhaps learn how to communicate for an interview or learn skills that will help us become more independent. I want to create jobs for people with disabilities. I want to inspire others to reach their dreams. 

A funny story I would like to share is that when I was young, I would often repeat things from cartoons and tv shows. My favorite cartoon was Winnie the Pooh and my favorite character was Tigger. I remember one time someone asked me if I had brothers and sisters and I started to jump up and down and I said, “woo hoo hoo hoo! I’m Tigger and I’m the only one!” I remember the person just awkwardly laughing at me; but that was just how I thought it was best to answer their question. Little autistic Julie was quite adorable if I do say so myself. 

I guess what most people would find surprising assuming I haven’t told them I am autistic is that I am. Most people just look at me from the outside. They see a young girl who can drive, talk, cook, read, go to college, take care of my physically disabled mom, and at times even be able to hold down a job. What they don’t see is how hard I have worked to get to where I am today. They don’t realize and see how some days are really a struggle and how hard it is not to run into traffic when I hear and see lights and sirens (because that is a negative sensory for me.) Most people don’t know how hard it was for me to graduate from high school and all those times that I was bullied. I just wanted to fit in; but what I didn’t realize at the time was that I was meant to stand out. Now at 25 years old I want to stand out and stand proud. I want my bullies to know that I am proud of who I am. I struggled a lot growing up and there are some days where I still do; but I wouldn’t change anything about myself.