Saturday, July 13, 2019

Part 2 of 2

Signs/symptoms that showed I had autism”: Facebook introduced me to Robert, a young man from Wales who also shared my obsessive interest in the program Archer. I didn’t know he was Autistic until he posted a meme 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. My old foe—the battles I would give to avoid wearing the cheap, 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. I can’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 said there was no way I was autistic because everyone knew that only boys have Autism. Same with ADHD: this was a boy’s only club. Now, counselors, psychologists, and psychiatrists diagnosed me with Depression, OCD, 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; social ostracism; a desperate need for control and stability; extreme reactions or underreactions to sensory input; explosive, uncontrollable reactions to an overload of sensation or strong emotion; repeated activities which soothe, etc.

Learning about what the Autism Spectrum actually is, versus what is sufficiently comedic or dramatic for the purposes of Hollywood, was way more than a terrifying, infuriating fall down a rabbit hole; this was now a Neo-Meets-Morpheus, “what if I told you…?” moment that ended in a hollow, betrayed feeling of “how the f*ck did no one see this? Am I that unimportant, even for the people in schools whose entire job is to find kids who have a disorder or condition?”
Upon reflection, I had 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 a public school.

How I felt when I first received my diagnosis: 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 I couldn’t hide them, why would anyone care now since I knew how to fake normalcy? After all, who would ever know the difference if even I didn’t realize I’d trained myself to override my natural thought process and instincts with another, 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.

How I feel about my diagnosis today: 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 self-destructive nature of ADHD, more people would be clamoring for a cure. 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 pronounced obesity—literally cursed. But 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; and even though there was so much to fix, all the cruel bullying was good for me—they were reminders that I’ve forgotten something that I’m supposed to do. I should be glad that someone cared enough to point it out in a memorable way.

Obstacles I have faced & Overcame in life are: My most consistent obstacle is bullying: no matter what, no matter where, bullies will find Autistics. I am a satisfying target, being tall, heavy, incredibly gullible, and very easy to work into an ADHD meltdown, or a dissociative Autistic shutdown.

How have I gotten through them? Well, mostly luck or pity, I think. My mother’s second husband was the worst bully I’ve known to date, but what agony I endured from his forced eye-contact, his rages at me for hints he dropped that I missed, his demand that all my stimming behaviors ceased, among the many other horrors I endured, nothing has been quite as cathartic and liberating as seeing him brain dead after an unexpected seizure. Not everyone is so lucky as to have the embodiment of their misery drop dead, but I won’t lie about it—my life became so much better once that man was dust in an urn.
I do still have nightmares about him though, so his damage lives on. In time I hope it will fade.    

Part 1 of 2

I am 38 years old, and I was born in Pittsburgh, PA. I grew up near Cleveland, Ohio; currently, I live near Phoenix, AZ.

Currently unemployed; the last time I had a job was 2013. My masking endurance just isn’t what it used to be, and I can’t mask much at all anymore. Apparently, that makes me de facto unemployable, despite what companies say publicly about supporting a neuro-diverse workforce.
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. 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.
Something people would be surprise to learn about me is that I also have ADHD, and if neurotypical people had any idea how debilitating ADHD is—especially regarding regulation of emotion, impulse, and motivation—I’d bet that that’s the neurological condition humanity would try to cure. Not ASD.
In my opinion is my biggest accomplishment thus far is that I just completed a Bachelor of Science degree from the University of Arizona.
I want to change the world by: I want to get involved with horse racing marketing and promotions, as my degree is in Animal Science with the Race Track Industry Program as my emphasis.
I wish others knew about autism is the physical toll Autism takes from the body through masking and its accompanying anxiety, the hidden stimming (teeth grinding and jaw clenching are my most painful stims, but I don’t even realize I’m doing it until my jaw aches), and 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.
What I want to tell fellow autistics: 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, because no society designed and run by Autistic people would be so utterly half-assed at everything that Autistic people need to be 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, but it is necessary to do this, and get ready for an ugly fight—the kind where thousands of cable news consumers write in the comment section things like:
 “Autistics should be sterilized in exchange for better services.”
“Parents of such children should be allowed to choose euthanasia; it would be a kindness to everyone because autism destroys marriages and families.”
That kind of ugly.
But really, what other choice do any of us have? Leave things as they are and say, “it’s better than it used to be.”? Well I say, “to hell with neurotypical mediocrity—we deserve a better life than this!”

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 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 “Jackie Germs” –which was about as fun as a round with a cat-o-nine-tails. “Jackie 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. “Jackie 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 this was normal and yet just existing caused me so much misery, then the school counselors were right, and I needed to change who I was. Between             3rd and 5th 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—because I don’t automatically adjust volume and pitch to reflect the unspoken dynamic of my relationship to the other people in the conversation.
 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 8th 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. I thought I had finally destroyed the clumsy freak buried deep in my brain, but that freak is who I really am, and now that my brain is so exhausted from 30 years of painstaking observation, mimicry, and masking that everything bottled up is coming out. If that isn’t awkward, I don’t know what is.
        As I wasn’t diagnosed until age 38, 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 learning 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. 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. When I turned twenty, I started to notice that my hands weren’t responding as quickly as they used to, and 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.

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. 

I am 44 years old and i was born in North west Manchester and have lived here all my life apart from one year at uni and i was bullied so badly when i lived away that i had to return home. When i was living in Halls of residence i was bullied and it has affected my anxiety even now. The people i lived with would keep knocking on my door to wind me up and would turn the electricity off from outside the room so that i couldnt do any work. They stole some drinks from me when i returned there once and threw me in a bath of cold water. They locked me out of my own room once and read my diaries. They threw darts at the door once and sprayed foam on the door. These were students at university and this is how they behaved. It was so bad that i moved out into another area of the residence. I had no problems there but they too were horrible people, they would congregate outside my room and i heard them talking about me , saying all i used to say to them was hello and nothing else. They were horrible too.I failed one of my exams due to the stresses of living in those awful halls. I was very lonely there and used to spend my days trying to understand Shakespeare and Marlowe and loads of other course material, but it made no sense to me at all. The joy and passion that i loved for literature at school had all vanished when i was at university. I hated university, i was desperately lonely and yearned for company and didnt understand any of the work, i had no support there. I expected tuition that i got at school but the tutors there were not aware of my difficulties . I had never even heard of Aspergers back then (1993).One tutor never explained anything and thats why i failed the exam. Another tutor was totally disinterested in the teaching and he used to give me low marks and never explained anything. Another teacher was so hostile towards me and just never showed any enthusiasm to teach me. After the year finished i had had enough of nasty university students and i moved back home.If i hadnt moved back home i would have surely failed the course and i wouldnt have been able to carry on attending the tutorials. I was very very lonely at university and couldn't make friends. I had come out as gay the year before i started university and this troubled me deeply, causing unbearable levels of sexual frustrations and loneliness.I was so unhappy that i never used to eat dinner at the Halls  because i felt paranoid that the people there were laughing at me.

After i left university i had no friends and was sick of studying boring incomprehensible English literature .I had loved it at Gcse and A level but the bullying of some  students and the indifference of the  tutors towards me at university had squashed my interest in it. I didnt have a clue what i wanted to after i left university. I applied to a PGCE in teacher training at primary level as i always wanted to be a teacher. Unfortunately it was a major mistake. I couldnt do any of the work and i was so lonely again  i had no friends on the course and i was crazily sexually frustrated towards so many men and yet i never got sex. It was constant lasting friendship that i craved deeply.I couldnt concentrate on the work either and i just couldnt cope there. A tutor said to me that i was a big cause for concern on the course, that i had no friends and was unable to form and maintain friendships with either staff or other university students and she said all the tutors apart from one were concerned about me. She said i would never make it as a teacher and they didnt know how i ever got accepted on the course. I was devastated and pulled out of the course the next day. The consequences were dire: i couldnt find any employment anywhere and i had terrible rows with some of my family that permanently ruined my relationships with them. I sank into deep depression and just couldnt get any job anywhere. In 1998 i went for an interview somewhere and the person who was supposed to be interviewing me was forty minutes late and then said he had forgotten about me coming for an interview. He was horrible to me and never rang me the next few days  to tell me if i had got the job. When i rang up he was horrible to me, saying no i didnt get the job and he didnt ring me to tell me because he didnt think i was worth it. I don't work and haven't worked for over twenty years.This is partly due to me becoming very mentally ill towards the end of 1999 and having a nervous breakdown throughout 2000. I was put on medication and i got better for a couple of years but then had major problems again and had a second severe nervous breakdown in 2003 during which i was quite psychotic again. During the times in my life when i worked i was picked on very very often and made to feel that i was inferior to other workers and that my work was much more inadequate . I was often targeted by other workers for being gay and in those days (mid to late 90's) there was a fair amount of negativity about being gay. I was laughed at by some other workers for other reasons such as some used to say i looked like a rodent.

 This filled me unbearable pain because i was called this by some pupils at school. I had virtually no self esteem or confidence before school and even less after the times i worked. I started suffering from depression and obsessive compulsive disorder in late 1991 after anxiety was unmanageable and i was doing badly at school and was being constantly verbally targeted and i hadn't accepted or even was fully aware that i was gay.I always feel very very resentful about what happened once when i had a job interview. It was one chance to do a job that i feel i could do. I went there for the interview and they said that they would let me know. They didnt ring so i rang up. They said i hadn't got the job. I was so angry and hurt, i could have got a job there yet i wasn't given a chance. I had a row with somebody a few days after that and it permanently ruined a relationship. If only i had been given that job then things may have been different in several ways. Again i hadnt been given a chance.The same thing happened in another year when i applied to do voluntary work  at a library and was told that i was too nervy to be accepted at the library and also the year before i was at an interview about tax discs and i didnt understand how to do it and so i told them and the jobcentre then blamed me for not accepting the job, saying that i could have done it. But i couldnt have done it as i just couldnt understand it. This is another example of how people just don't understand how autism affects people and how being able to do some things does not mean that someone is able to do other things that people take for granted.I had applied At other temp jobs i had i was treated badly and made to feel like an outsider. Once i was typing as fast as i possibly could and yet the boss was picking on me saying im not doing it fast enough. How could i have not been doing it fast enough when my fingers were working none stop ?He kept other workers on for a longer time but didnt keep me on. I felt victimised and left out. Other workers made fun of my effeminacy and said things like ,"don't forget your handbag." When an interviewer ends your interview with another "Dont forget your handbag," then you just know that they don't take you seriously and you haven't got the job.I found work very very difficult and i got depressed at a temp job in 1998 and the other workers didnt know how to behave around me and i felt so trapped there. Two workers really disliked me and i started having obsessive lying negative thoughts at work and became paranoid. I also found work very difficult and i couldnt do what others could do such as make boxes out of cardboard.One woman called me and somebody else "Dumb and Dumber" because i wasn't able to pack a box properly. She was calling me stupid and this upset me a lot.Some workers were nice and some staff were nice. But overall i have horrible memories of when i worked. It was like when at secondary school and i was really picked on by a nasty  teacher just because i couldnt understand how to measure angles properly.i got lost on a run in a park once and he hated me even more after that because he had to explain to the deputy master why i hadnt returned to school with everyone else. I had got lost and i hadnt known where i was and ended up knocking on the door of a house somewhere and had to get a taxi back to school. He made me run round the school field three times and then when i had to report  to him to say i had done it he said "You're not even sweating". But i was absolutely  exhausted. He also put me in detention some years before because he thought i hadnt done the homework properly as i hadnt measured the angles correctly. But this was not because i did it on purpose or because i couldnt be bothered, it was because i couldn't understand how to do it properly. He also made fun of my physical appearance and commented "are there any rats in the river Mersey?" and again i was being laughed at for looking like a rodent, only this time it was a teacher who was commenting it and not pupils. He really hated me. It filled me with pain again and i continued to feel like an alien compared to everyone else. I found working so unpleasant, having to stick to doing work that was so boring and the only way i could get through the day was to hum loads of music in my head over and over again. But after a while this got on my nerves as i had a headache from having to force myself to hum music. This is actually one of my gifts and talents - i have an ultrasensitive appreciation of music, and it began when i started primary school in 1982 when they used to play classical music in assembly each morning. I was totally fascinated by it and went to the musuc shop HMV at weekends to buy tape after tape until i had loads of tapes and records. Then i bought cds. When i went to university i was very very lonely there and couldnt make friends there and music was my only source of comfort. I have lots of cds and when i listen to symphonies its not just music; to me its emotional experiences through emotional worlds and colours and textures and im fascinated by the way the music is structured and connected and am also fascinated by how multitudes of different orchestras and conductors can make the same music sound totally different and dress it up in differeny colours and textures and bring out different emotions and landscapes on the music recording and how different speeds can make the music sound totally different , whether its played slow or fast or just differently judged.i used to play the flute at primary school but gave it up when i started high school . I wish i had kept it up . Im too anxious with atrocious concentration now to be able to learn or remember facts and figures.Music is one of the things that saves my life and makes me want to live on the earth.

Something someone might be surprised to know about me is that i can write poetry and can remember some scenes from old coronation street episodes (when it was great in the 70's and 80's, not as it is nowadays), i cannot tolerate watching it now, i get too angry and very jealous of the characters' lives and also i get very sexually wound up by some male casts of the soaps and as i am celibate and have never had a partner, i get very resentful that everybody works and has sex and has family and yet for me, i never had a partner (a lot is because of the bullying and very personal derogatory comments that were made to me throughout secondady school made me have body dysmorphia and made me feel like an alien and destroyed confidence in myself and this turns people off me). Another thing that people may be surprised to know about me is that i have a good memory for dates and can remember what date and what month and year some things happened on. For example i can remember what date it was when a pupil in the year or two above me saw me waiting next to him for the bus home and he said to me that "you are the ugliest person i have ever seen." I froze with pain and felt unbearable pain mentally all the way home. I remember it was on Monday 10th September 1990 and i had taken out "At Bertram's hotel," an Agatha Christie book from the school library that afternoon and i remember it had a darkish green cover i think.

In my opinion my biggest achievement so far has been trying my best to learn how to cope with uncontrollable rage and paranoia and extreme sexual frustration and trying to assuage feelings of disordered personality.Its the medication i take that has helped me with some of these awful problems. My other achievements include stopping smoking and getting three high grades at A level and getting through feelings of hate towards some people.  My other achievements are being able to donate books and cds that i never thought i would feel able to get rid of.

How would i like to change the world? In many many ways!!!! I would ask the Royal family to fund charities such as RSPCA and PDSA and ask them to invest millions in mental health and autism and hospital services and cancer research and i would ask the Queen to send far right /racists/antisemites/homophobes/ bigots to hospitals to receive compulsive psychiatric intervention and therapy and not be released until theyve learned to love everybody no matter what they are. I would ask the Queen to intervene in those with any racist view's at all and in politics and to force the aggressors out. I would request the Royal family to invest millions of pounds to build homes and guarantee that nobody is ever homeless ever. I would request tv bosses  to stop putting depressing trash on tv  and ask them to start caring about peoples' emotions by releasing dvds of whatever people want to see - my choices would be all episodes of Coronation Street and Eastenders and Family Affairs and Families and Home and Away and Neighbours and Chips' Comic (Kids tv  Channel four,1983) and show repeats of fantastic programnes .I would also ban newspapers from reporting only horrific news and force the papers to publish good and happy news too every single day. I would also force the news on tv to stop focusing on every evil horrific crime that happens and to force newsreaders to stop looking so irritatingly detached from the news, and to open up their hearts to the camera and say how they feel about the news and how they would cope with the terrible things happening. 

How would I change myself? I find it very hard to change myself, try as I do. I would like to be a calmer and more optimistic person and would love to be able to remember facts like I could when I was at schools. I would like to stop being so paranoid about things and I wish I could accept people as they are and wish I could understand TV programs and dramas and comedies - I just can't follow the story in a comedy eg 'allo 'allo and Dads Army really baffle me, I don't understand what the story is supposed to be about. And I can't empathise easily for example if I don't like or understand a program or a book or a recording of music then I can't understand how other people can understand or enjoy it. Like when I hear horrific news constantly then that seems to be giving people the impression that the world is a terrible place and that there's much to fear; yet why is it when I go out I see one person after another laughing and joking and looking happy? What are they so happy about , don't they listen to the news, do they not get worried or scared by what's going on? It just doesn't make sense and I can't read peoples expressions very often. And when people ask how youre feeling, then why do they except you to day "yes I'm OK" and why do they get do offended if you say "no I'm not alright"?  Why do people criticise other people's faced, saying for example that they are miserable looking? If someone looks miserable then that is their expression and how can it be wrong? Some people have criticize me in past, saying "You look so miserable! So every time I look at you from now on I want you to be smiling." I felt hatred and rage towards some people who said this, I felt that I was offending people if I wasn't smiling so I used to force myself to smile but doing that caused me headaches and facial ache. When i had psychoses i felt persecuted , that some people were picking on me and made me feel like I was doing something wrong by not smiling. But loads of people walk around looking miserable, why do people think its a crime. Why do people pick on me? I don't understand people at all, they seem cruel and  hypocritical?

I wish neurotypicals would understand  how the world seems like a terrifying incomprehensible place full of loud noises that cause distress and how certain colours and the writing layout of words can cause sensory overload and how certain things can cause ultra sensitive reactions that are difficult to control. For me some accents that people have cause sensory arousal and heightened sexual responses and because I can't reveal it to the people who are talking, it stays inside causing low self esteem and depression which all stay stuck inside me .I wish people who were neurotypical understood issues like these as well as difficulty coping with changes and how this causes awful anxiety and doesn't mean we are attention seeking.

The resources that have benefitted me most have been art therapy (as it allows expressions of emotions in a more spontaneous way than words sometimes)and writing poems gets feelings out and calms my nerves. Face to face counselling has been therapeutic  too and listening to music as therapy has saved my life
A funny or awkward story I would like to share is something that happened at university. I was with a French woman who was quite homophobic. I hadn't told her I was gay as I felt too nervous. I had a friend called Liam (ive changed his name) who also was gay and it was a platonic friendship (he often said how ugly I was and he always used to put me down and I only bothered with him as I was so lonely at university).Anyway once i arranged for the French lady to meet up with us for a drink . i hadn't told her that Liam was gay either and we said we would all go for a drink in the gay village. We sat for ages and the French woman didn't know that either of us were gay and as s joke I had told her that Liam was always having a different girlfriend every few months - when it was really that he was very promiscuous with men ! We were talking and Liam had to change the gender of the men to make them sound like women! On one occasion on Valentines Night in 1996 me and the French woman. went to cinema to see  a film and an old man saw us and remarked "Go in there with her and come out a man!" If only he had known I was gay and we were only going as friends. (Although she was homophobic and we didn't have much of a friendship and I felt totally unhappy in her company yet I didn't know how to say I didn't really want to see her as a friend anymore).

Any advice that I would like to give other people on the spectrum is that you have to use all your strengths in order to cope with the difficult times in life. Being yourself  is very important  and try to reach out as much as you need to for support.

Signs that I saw in myself that I had autism were many.Being unable  to tolerate dismal pop music in the background and loud music too; having no understanding of sport rules and being very slow at understanding things and being unable to follow a conversation sometimes, just visualising words in mid air and not seeing the meaning very often; reading a sentence involves me having to visualise what picture each word stands for and its like torture trying to remember  the plot of a story as I have to keep re reading the same sentences over and over again. Reading is often hellish and o often don't finish a book as I have very short attention span and terrible short term memory.I cannot understand plays at all or murder mysteries or a lot of comedies. I take things literally, I don't understand terms like 
"Real estate or "Tender"  or expressions such as "And then some," "you got this," and "the taxpayer","you think world owes you a living," "get away from the rat race," "and then some," "that is all," "Get behind me Satan!" "When it comes to the crunch" ,"life's too short," "you're a long time dead," "chip off the old block," "chip on his shoulder," "ha e your cake and eat it." These expressions baffle me and I cannot work them out and it causes me rages and frustrations. I cannot cope with the slightest change to routine and I don't like bring hugged. I can't make friends and am very very anxious in social situations, I find d human beings unpredictable and very very strange and just cannot seem to get on with different people.

When I got my diagnosis I felt like it was expected that I had autism as I had been advised I had aspergers as early as 2001 although that psychologist didn't send me for a diagnosis. I felt very sad and yet relieved as well when I got my diagnosis,felt like crying in a way but also I was glad I had got a diagnosis.
I don't feel  much differently now about my diagnosis compared to how I felt when I got it. I still feeling terrified of the future, feel that will be left alone with no support and no family to help me out. I feel very jealous of people who have everything I ever wanted out of life: assured housing, a dog or cat, a partner, a job, holidays, friends, someone to drive me around, good health, prospects, fun, things to look forward to. Every single one of these things are it have been or will probably be denied to me and it hurts me very much. I did work hard at school and ended up with none of these things whereas I know loads of people who did no work at school and they e got all these things and have been given second chances at college whereas its too late for me in lots of ways and it really upsets me very very much. I feel terrified of diseases and homelessness in the future and I have hospital phobia and am frightened of being denied care. Im sorry to sound so negative but I feel so bitter about this world and fear so much for its future in every way, economically and politically and climate change and the dangerous ideologies and nuclear weapons and it leaves me very depressed a lot of the time. 
Not having a diagnosis until I was 42 meant that all my life I'd never understood what was really wrong with me and why I was so different to other people. I never understood why I was picked on all the way through school and why I could never understand sports or rules of games like Monopoly and why I always lost at draughts and couldn't understand dominoes or card games or why everyone used to laugh at me for not being able to play snooker or why I did not like wearing trendy clothes whereas everyone else wore trendy clothes with so much ease.I didn't understand why people could read body language and facial expressions whereas I cant'. I was told i may have aspergers in 2001 so I knew when I was 26 really that I probably had this syndrome, so it didn't come as too much of a shock when it was official two years ago.

The obstacles I've faced in life are things like difficulty in finding work and great difficulty being able to cope at work and enormous problems getting on with and trying to understand other people. Coping with being gay and never being able to find a partner, coping with loneliness and rejection by peers and some other people who don't understand and never even cared to understand what my problems were. Having to constantly deal with depression and anxiety, obsessive thoughts and having to constantly try to  control anger so that it doesnt erupt into rage and worrying constantly about what the future will be and how I will survive and what food will be available and what services there may be in the future for autistic people. All these things really worry me all the time. I have this difficult condition that makes a hard life even more difficult to cope with a lot of the time.

I’m 51 years old, from Edmonton, alberta, Canada

 I’m currently unemployed and have been for a number of years. Don’t really like it, but just accept it
something people would be surprised to know about me is:
  I’ve been playing the double bass for about 39 years and have written two books (with my mom’s help) on growing up with Asperger’s syndrome

I’d like to make the world more accepting and autism friendly, especially when it comes to employment and overall support.  There seems to be lots of stuff for children, but nothing when it comes to teens and adults.

Something I would like to tell others who are autistic is that: If you’ve met one person with autism, you’ve met one person with autism.

Something I want to tell fellow autistics: 
we are not alone…we are all here to support and help each other, hopefully

My mom noticed my odd behavior, stimming, etc, and knew I was different. She mentioned it to someone she met at a dinner party and he told her “your son has Asperger’s syndrome” which we knew nothing about….and almost nobody did either.  This was back in about 1995. 
how did I feel when received my diagnosis ? surprised and enlightened.
Today how I feel about my autism is that I sorta take it for granted….now I know….doesn’t make things a whole lot better or easier, but
at least now I know

Life has been difficult  with many obstacles since I recieved my diagonsis later in life. Nothing was known about asperger’s syndrome (*high functioning autism) back when I was growing up in the 70’s. Maybe something was known about autism generally back then, if you were diagnosed as a child and they “caught it” in time. My childhood was pretty difficult, to say the least. There was so much we (and I ) didn’t know about, nobody did- asperger’s syndrome, dyslexia and dyspraxia. It was only much much later until I figured out I had these conditions, and by then it was too late for any help/support.

Sunday, June 23, 2019

I'm 23 years old. I was born and raised in San Diego, California, but moved to Oregon with my mother at age 20 in 2016. In my opinion is my biggest accomplishment thus far is being able to live independently. Bills, balancing budgets, and keeping up a house are all very difficult for me. I thought I would always have to live with my mom, but with time and help from my friends and family I have been able to learn how to be independent. something I wish neurotypicals (those with not autism others) knew about autism is that Autism is not a horrible, disabling condition. Nonverbal Autistics have a lot to say, even if they can't use their mouths to say it. Autistic adults have full, happy lives with marriage and getting jobs and having children and families. We need support and acceptance, not pity or attempts to change who we are. Autism is also known to be comorbid with conditions like Ehlers-Danlos Syndrome which causes chronic pain, and some Autistic people also have Sensory Processing Disorder related amplified pain. Listen to us when we say things hurt or feel weird in our bodies. Something I want to tell to the rest of the people on the spectrum is that we need to support each other and uplift the voices of the most vulnerable & marginalized members of our community. Autistic people of color, nonverbal Autistic people, trans Autistic people, and more. We are all Autistic and an injury to one is an injury to all! I was first reading about Autism in a science class book when I was 13. I remember thinking all of the traits sounded like me, but the book said Autism was diagnosed by age 18months so I thought it couldn't be possible. Then I learned that lots of people go undiagnosed and I talked to diagnosed Autistic people and it really felt like everything made sense. When I was first diagnosed I felt relief, and like I finally felt seen after being ignored for so long
I wasn't diagnosed until after I was out of school, so I went all those years without any tools to help me. I did well in elementary school but as soon as middle school happened I really struggled but didn't get any help.

38 next week. I live in Las Vegas, NV I used to work in healthcare. I did that for 15 years but was starting to get burnt out and my last manager really pushed me over the edge by retaliating against his employees anytime they needed time off. He was also very difficult in getting accommodations for my autism. I currently do part-time work with instacart and I like that I can make my own schedule and don't have to work with anybody. People are usually surprised to find out I have 11 tattoos, have lots of experience in music and in professional editing and proofreading. They are also surprised by the fact that I am Hispanic LOL. I don't usually look at any successes as big accomplishments but I guess if I had to pick it would be having designed books with my name in the credits, working with a music producer, and finding out I make a great comedian how i would want to change myself I would like to learn how to better understand the world around me. How I want to change the world, I want to educate people on autism in its different forms because it would make it easier for autistic people to communicate if people understood. Something I wish neurotypicals (those with not autism others) knew about autism is if you don't communicate directly, there is a good chance I won't understand what you are saying. If I ask questions it doesn't mean I'm stupid. It means I'm trying to understand Something I want to tell to the rest of the people on the spectrum- just be yourself. Honestly it is too complicated to try to cover up your struggles or things you don't understand. There's nothing wrong with you. We are just uniquely designed and the rest of the world hasn't caught up yet.
- I got diagnosed late in life so the only sing I've had is therapy. I'm still learning what resources are available to me. It is different and much more difficult when you are diagnosed late in life.
an employee therapist had suggested I get checked for sensory perception disorder because I explained to her the problem I had was loud noises and light. I also explained to her my extreme boredom at work. My nephew is autistic so the more I compared what I saw in him to myself, the more I wondered.
it was liberating and sad all at once when I first got diagnosed. In a way of validated why I have felt a certain way my whole life, but I also knew things were going to change and it wouldn't be easy. Today, I am definitely more verbal about it. I want people to be educated about autism so I try to to be an advocate. I don't look for sympathy but rather for understanding. I've accepted this is who I am and I like who I am! There are things I still struggle with but I am learning. When you are not diagnosed early on, you learn ways of covering up your struggles because you know you don't fit in and you feel like something is wrong with you but you are scared about it. So you learn to do your best to fit in and be like everyone else, but the reality is it's painful inside when you do this. My therapist told me I was very good at hiding the things I struggled with. I've had to learn to undo some of the coping mechanisms that were doing more harm than good and now I am trying to learn better ways but it is challenging. Also, people are so used to you being one way that when things start to change they have an issue with it. I find that people still expect me to be who I was before my diagnosis when I am not able to do that any longer. Getting my diagnosis allowed me to be authentic and allowed me to bring my struggles to light. I wouldn't know how to go back if I tried nor do I want to. But this creates a very lonely existence because people don't understand. I get told often that it doesn't seem like I have autism or that what I'm experiencing is not my autism because other people experience those things too. I'm not good at explaining exactly what I experienced so I know that when I explain it to people it sounds generic.

Obstacles I have overcome- I have experienced abusive relationships, being low income, I also have fibromyalgia, I am very sensitive to sound and sometimes light. I have trouble with large crowds and feel very awkward in social situations. I have experienced health problems not related to my autism, lots of judgemental people who don't understand how autism works. I have experienced adversity and I was also diagnosed with anxiety and depression. I don't have much of a support system. I just do my best to push through each day and try to find things that I enjoy or things that will calm my mind