Friday, April 7, 2017

Interview with Alexandra Forshaw- Autism Acceptance Day 2017

Today’s interview is with Alexandra Forshaw, whom I have known on Facebook for several years. I am very glad to get the chance to post her thoughts for these ongoing Autism Acceptance Day and Month interviews. She writes:

I am 43, married with one grown-up daughter. I am a trans woman.

What is your life like as an Autistic person?

My life these days is pretty good. Since self-diagnosing several years ago I have learned that putting accommodations in place helps a lot. Things like stimming when I need to instead of trying to suppress and hide it as I was pressured to do through most of my life. Being my autistic self openly uses a lot less energy every day and leaves some over to cope with the unexpected things life has a habit of throwing at everyone. Like a lot of people I know, events over the last year have made me more politically active, and I have been making a bigger effort to promote autistic rights.

What is the most joyful, fun, exciting thing about being Autistic?

One thing I used to take for granted, that I have since learned is shared by a sizeable fraction of autistic people, is the way I think without words. It sometimes gets called visual but that is woefully inadequate to convey the sheer richness of the world inside my mind. Putting it into words is like the difference between the sentence, "I ate a slice of pizza" and the experience itself. I've developed a certain skill with language, the written word especially, over the years as I've tried to communicate some of the inner richness but it's only really other people who think in similar ways who truly understand how it feels.
Understanding and the connection that springs from it is one of the best things to have come from being autistic and getting to know other autistic people. My closest friendships are with other autistic women who can identify with my experiences because they share them.

What is the most difficult about being Autistic, for you?

People look at me and they see a confident woman with a stable marriage who can hold down a job and manage day to day. They don't believe me when I say that I'm autistic. There's a lot they don't see. They don't see that I was pressured into leaving two jobs when aspects of my autism affected my ability to do the work. They don't see that even though I am in my 40's I have never successfully lived independently. They don't see that I was deep in debt for years because I can't manage household accounts despite having won Math awards when at school. They don't see me on those days when I am overwhelmed and unable to function. And because people don't see all this they imagine it never happens, that I don't face obstacles in my life.

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally?

I first became aware of it through blogging a couple of years after it started. Between that and the almost complete lack of knowledge exhibited by most people I met in "real life" it became clear that this was going to have to be a sustained effort over many years. One positive effect is that media coverage means that many people have now at least heard of autism even if they don't properly understand what it is. A few (and I unfortunately do only mean a few) have been sufficiently curious to ask me for more information, but there's a long way to go. In some ways even being transgender is better understood by the public at large than autism, so there's plenty more still to achieve in terms of getting the message across.

What does "moving beyond awareness" mean to you?

To me it is absolutely critical. Awareness only means that people have heard the word autism before but don't have any knowledge about what it is, what autistic people are like and what our needs might be. My personal goal is for autistic people to receive the same recognition, respect and rights as anybody else. It begins with education, teaching about autism and autistic people to build understanding. That leads to acceptance, which leads to being treated fairly by society.

What is one thing about acceptance that would make a difference in the world?

As I said above, it is about being treated fairly. To be given equal access through accommodations as a matter of course. The same goes for any disability, or it should. I'm a great believer in the social model of disability: that disabilities arise from obstacles and can be countered by suitable accommodations by society. We'll know when autism is accepted because those accommodations will be provided routinely. Until then I will keep pushing for acceptance whatever ways I can.

Thursday, April 6, 2017

Interview with Sam Perry- Autism Acceptance Day 2017

Sam Perry, 21, is an autistic woman living and working in the Orlando theme park industry. She lives independently with her partner, two cats, and three guinea pigs.

What is your life like as an Autistic person?

    For me, ‘adult life’ is like trying to muddle through the day-to-day in a different culture that I wasn’t exposed to as a child. I didn’t know exactly why I was different until early high school and I wasn’t diagnosed professionally until age 19, after two years in college. Being autistic and being aware of it now means I adjust to the neurotypical norm when I have to and I have to take care not to exhaust myself while doing it. In college it was easy. I memorize rapidly and forget all of it as soon as I’m not repeating that knowledge daily. So I breezed through college in three years with a Magna cum laude GPA. Transitioning into truly independent living and working was difficult. I was homeless for a month and a half after graduation because nobody walked me through how to find a good place to live. Being in Florida, I fell for a cheap apartment and woke up on the first night surrounded by police sirens and cockroaches! So I lived on a friend’s couch for a while, and then I found a decent place that I lived in for two months. But the roommate who was taking care of everything was manipulative, verbally abusive, and nearly got us evicted. I’ve stumbled along like that all through life. I was in an abusive relationship as a teen, too. Not many people realise how easy it is for autistics, especially autistic women, to be manipulated. Luckily, I now live with my long-term partner who is also neurodivergent and it is a 100% safe and stable situation. We both have careers and we pay the bills. So I’m very privileged despite all of the messes I’ve been in.
Often, I go to work and do nothing else. Once I’m home there’s just no energy left. Some people might say ‘oh, me too!’ without understanding that no, I’m not talking about sitting on my couch because I’m tired but still being able to cook dinner and do housework. I’m talking about sleeping 10-12 hours a day and still having limited energy, having to hyperfocus on housework when I have days off. I eat a terrible diet because I can’t handle a lot of foods and I don’t have the time, money or energy to cook decent meals--it’s a tasty diet, but I’m obese! My home is cluttered and full of stuffed animals. You’d come into my apartment and think we had kids. (We don’t, and we don’t want any!). But above all it’s good. It’s normal. You might read these paragraphs and think ‘god, I don’t want anyone to live like that’. Yet for us, it’s really okay. The good mostly outweighs the bad.

What is the most joyful, fun, exciting thing about being Autistic?

For me, I was privileged enough financially to move here so that I could pretty much live and breathe my special interests. I work in the ‘backstage’ offices of a major theme park, and it’s great, but I also spend as much of my free time out in the parks as I can. I share this joy with my partner and the circle of friends we’ve made together who are theme park locals. That freedom to really do what I like to do, as much as I’m able to within the constraints of a 9-to-5 job, is how I keep healthy. I have a therapist and I take medications but that freedom is my life force, really.

What is the most difficult about being Autistic for you?

    Being in the body that I am, the position that I am, having the brain that I’s essentially a daily struggle to be taken seriously. Among the people I work with it’s awkward because there’s this feeling of infantilization, always. I’m only 21 but I feel like I’m treated like a kid because I’m enthusiastic about where we work and an interest like mine can be seen as ‘childish’. Recently I was invited to a department awards ceremony. I got an award for using an internal ‘suggestion box’ to give my thoughts to a different department about something in the park that could be improved. My boss spoke about how I knew everything about the parks and that if anyone needed a VIP tour to give me a call...I couldn’t help but feel embarrassed. I work my butt off doing a specific administrative job that doesn’t have much to do with my personal interest in the parks, and all anyone could talk about was how I could rattle off the opening dates of half our rides. It’s being reduced to a parlor trick, a conversation piece. That part honestly sucks.
Worse than that is when people in ‘autism community’ spaces, online, in person, anywhere, refuse to consider your words. It’s parents and educators and ‘experts’ that think they know better than living, breathing autistic people. People who obsess over the causes of autism without considering that their child or client needs to learn how to self-advocate or else they’ll grow up truly ‘voiceless’ against abuse. There’s a lot of division and fighting between actually autistic people and those who think they know what’s best for them. Those battles leave me exhausted and heartbroken.

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?

    It makes me happy that we have an outlet. Two years ago I wore all red to my college classes. Red lipstick, red face paint, red nail polish, red clothing...and there was real, legitimate dialogue that was sparked by it. Sometimes I feel ridiculous going out like that, but the response is usually pretty positive from those who aren’t directly involved in the ‘awareness’ camp. It’s really funny how those folks love to go around telling everyone how ‘voiceless’ we are and then figuratively slap their hands over our mouths when we try to talk about our experiences. I think having this Acceptance Month allows us to take back what’s rightfully ours.

What does “moving beyond awareness” mean to you?

    Something akin to what we have with ‘accessibility’ in everyday life. I know the world and society are not perfect for ANYONE that is disabled, but when most people see that little blue and white wheelchair sign, they think of the accommodations that are in place. Bathrooms. Ramps. Low-height counters. Obviously the accommodations we autistic people need aren’t physical, but they are pretty straightforward. If someone hears the word ‘autistic’ their first thoughts should NOT be the stereotypical images forced upon us by that ‘awareness’ movement. I’m talking not forcing eye contact instead of wearing puzzle pieces. Knowing what stim toys and sensory-friendliness are instead of remembering a filmed meltdown some ‘autism mom’ posted.

This movement must go beyond the neurotypical and allistic perspective to be placed back into the hands of those who actually will benefit. Can you imagine a world where the women’s rights movement was comprised of 100% men, talking about their family’s ‘struggles’ while carting their silent wives and daughters around as pity trophies?

What is one thing about acceptance that would make a difference in the world?

    God, you know, the first thing that comes to mind is that universal accommodation could be standard. What if all spaces were sensory-friendly? What if all people could choose to pursue a career path that not only aligned with their interests but was healthy for them based on their needs (such as working from home or on a flex schedule), without having to worry about the financial repercussions? I think acceptance is the first step to ending the ‘othering’ of the disability community. Yes, we are different--our culture and spaces are vastly different!--but our treatment in society should not be.

Tuesday, April 4, 2017

Interview with Ryan McReynolds- Autism Acceptance Day 2017

Interview with Ryan McReynolds, age 38, singer/songwriter/musician, occasional actor, elected Precinct Delegate, member of Autism Support and Resource Center Board.

What is your life like as an Autistic person?

That is a good question, I did say my 1st word at 9 months old but I did briefly lose speech for a time, not sure how long but I got tested for deafness before I got diagnosed with autism, as I use to be able to make myself unable to hear, if I did not want to hear anyone or anything and I haven't a clue how I did this, as I sometimes wish I could still pull off this whole hearing when I feel like it and not hearing when I feel like it.

I do know when I was diagnosed, I was supposedly never gonna have full language, never gonna learn to ride a bike but I do communicate and I sing and play instruments too, I even ran for political office including State Representative, ok I lost the primaries but I have to say I think I opened doors for others on the spectrum to run in the future and well I had 2 opponents in the primaries and while I lost the primaries, the winning opponent happened to be the opponent I liked better, so I endorsed him in the general election and called for people who voted for me in the primaries to also vote for him as well in the general election.

I've also played a few music gigs and performed on the same bill as independent label national acts (one of them before they got a deal, and while I may not have gotten a record deal myself, but fact someone who was on the same bill as me had gotten a deal later on, I was in awe and was like that is very awesome).

What is the most joyful, fun, exciting thing about being Autistic?

Well that is a very good question considering how complex autism can seem, plus the fact that each autistic person truly is different and unique but I can try my best to explain this.

One plus factor is being able to act hyperactive even as an adult, well ok there are instances when I have made myself contain myself, such as when I volunteered at Vacation Bible School at Church as well as volunteering at an Autism Summer Camp, due to the fact I did want to set myself as a good example for the children, but at the same time not being that bothered if any were being hyperactive, plus there was one kid at Vacation Bible School that was hyper that I suspected could be ADHD, but I never asked.

But I have gone for making animal sounds occasionally for the fun of it such as meowing (especially at my cat and other cats and even impersonating the mac mow sound my cat does), other sounds i've also done are barking and the sound of a peacock which sounds like they say help (I made a recording of myself doing that and someone who got the recording played it to guests and they thought a real peacock was nearby lol).

Being I am a singer/songwriter/musician, I record my own songs as well as doing mixing and editing and putting the material on CD and in MP3 format (since some people still prefer CDs and some prefer MP3 and I like people to have my music in whichever format they prefer).

I am also good with filming and editing videos, have put old videotapes into my PC to put the old footage on DVD, but I nowadays use my Tablet to film and take pictures, and if anything needs to be edited, I edit before I finalize and put it on DVD.

I've also gotten to do some traveling too, including international traveling as I live in USA and i've been to Canada 4 times and once I went to Europe (2 weeks in Germany with short trip into Austria and Czech Republic which got renamed Czechia for English name for the country).

There are some Autistic people who have chosen to be Atheist or Agnostic but me I am a Christian or rather I should say Judeo-Christian, as Jesus our Lord and Savior was Jewish himself as were his earliest disciples (even Jewish individuals I have spoken to have said themselves they are aware that Jesus was Jewish), and my DNA test even confirms 2% Jewish in my ancestry, and things celebrated by Judaism such as Purim and Hanukkah have influenced my thoughts and feelings on things, such as the story of Esther and the fact Haaman decreed death for all the Jews using the King's seal when the King had no idea his wife was Jewish and no idea Haaman whom the King respected and trusted, plotted to destroy Queen Esther's own people, but after 2 banquets and Esther revealing what Haaman plotted, the King was furious, called his guards and told the guards that Haaman had insulted the Queen and plotted to destroy her people and ordered him executed on the gallows that Haaman had prepared for Esther's cousin Mordecai who refused to bow to Haaman and had once saved the King from assassination.

The King then gave Haaman's job to Mordecai, but no one not even the King could remove the edict for the Jews to be annihilated, but Mordecai and Esther found a loophole, it was that they could create an edict with the King's seal that made it lawful for the Jewish people to fight for their lives on the day that they were to be killed (giving them the legal right to defend themselves against anyone who would dare attempt to kill them).

That is amazing to me, because although I am mostly of Celtic and Nordic/Teutonic blood, the fact I have 2% Jewish ancestry means that if the Jewish people had not been spared from annihilation, I would not even be alive today, and God only knows how many others on the spectrum might not be alive today either, even though others on the spectrum would probably still be here, I would not be here for sure

What is the most difficult about being Autistic, for you?
That is also a good question, and well I will say that in spite of how many more people are aware of the existence of autism, and how many have what gets classified as "awareness" I find there are people still not so accepting, as I remember some rude lady who figured out I am on the spectrum had suggested I go live in a mental house (needless to say I blocked that rude lady).

Another time someone who bragged she has kids on the spectrum and taught special ed for 4 years said the words of "there is nothing wrong with you." as if being autistic means there is suppose to be something wrong with me, I mean what's supposed to be wrong with me?

She accused me of being misdiagnosed and I was like excuse me I was diagnosed twice and in 2 different states and the psychologist that did my Michigan diagnosis is one of Michigan's best at diagnosing autism (his name is Dr. Andrew Maltz and I know others who also went to see him or took their kids to see him too, in spite of how far of a distance it was for them to travel to see him).

The rude lady then claimed whoever diagnosed me was making money, and I am like where was she in my life when I had battles in the school system and my parents had to conduct battles to make sure I got needed services, so needless to say I blocked this rude lady.

Granted I am not ashamed of being autistic but I do hate it when it is used against me for false accusations and other factors , in fact I remember I had a wrongful termination in October of 2015 at a mall I had worked at for cleaning crew with one factor being that a customer complained that I talked to his daughter, yet no one ever told me what the conversation was supposedly about and I never was arrested for anything, not to mention the job required us to talk to customers, especially if they had questions, even if said customer happened to be a kid.

In fact the year before there was a family that approached me on Black Friday that appeared to be from India, the dad did talk to me a little bit as he did speak a little bit of English but their daughter who was between 8 - 12 years old, happened to have total fluency in English, so when her parents had questions, before the dad did talk to me in the little bit of English he happened to know, the girl who was 8 - 12 years old, was translating for me and her parents between English and whatever the family's native language was, as it was obvious the family relied on this girl as their interpreter, so she asked me in English what her parents asked and translated my response back to her parents in their native language.

In fact one lady on security at the mall I had been on cleaning crew at could not even believe I was fired over talking to someone's daughter when she witnessed me talk to every kind of customer whether it be kid, teen, adult or even senior citizen, in fact before I got wrongfully fired, a work meeting passed out an A & W coupon for all types of staff to give out to families including kids.

But after this happened, I went to employment agency for disabled like before to get help in getting a new job and I decided I did not want to work in general public ever again, luckily I work in a restaurant as a dishwasher and only once in awhile on my shift might I be out where general public is but luckily that is not so bad in this case, plus the restaurant business is way nicer than that cleaning crew I got wrongfully terminated from.

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?

I was not aware till last year that Autism Awareness had also turned into Autism Acceptance but I am glad that is brought up, especially since I did previously honestly believe Autism Awareness involved being aware of the spectrum and encouraging knowledge and acceptance.

Unfortunately there are those involved in Autism Awareness that are interested in *curing* Autism or trying to get people on the spectrum to be normal which is the setting on a dryer.

In fact last year I did go to an event set up by the Autism Support and Resource Center which I am now on the board for, and it was called Autism Acceptance Day, to encourage acceptance of people on the spectrum and sure some adults on the spectrum including myself attended, as did children on the spectrum and their parents.

There were people not on the spectrum who also attended that may not have necessarily been related to anyone on the spectrum but they took an interest and some were taking classes studying about the spectrum and other disabilities/disorders and obviously had interest in meeting children and adults on the spectrum.

What does “moving beyond awareness” mean to you?

Well I know some people might give backlash and say is awareness not important? and I am like well I am not gonna minimize awareness and say it is not important, as it is important to know that Autism exist and is real, it's not made up or fantasy like the ignorant would suggest (even some of the ignorant also claim ADHD is made up too but several people related to me have ADHD for sure, so I know it's real).

Still there is more important things than just awareness, it is very important that me and others on the spectrum are accepted for who we are in spite of anything seen as being odd or weird or quirks or whatever.

Not to mention there are those who are amazed at my ability to know dates of events as well as being amazed at how far back my family tree is traced and I have seen amazing things linked to others in the spectrum, even if their skills and abilities differed from my own skills and abilities.

For example I remember at an autism swim event set up by a local autism society, my mom told another mom about me being good with history and geography and the other mom said her son is good with sports statistics, and I remember the same guy talking about Michael Jordan playing his 1st game in a new stadium (after his return to the Chicago Bulls and the fact they were playing in a new stadium).

Of course it does seem like there is more acceptance of Autism itself in Europe than in USA for sure, well at least in Germany, as even my cousin over in Germany and his wife has some good knowledge about Autism and his wife had even described to him when she noticed I looked at a Wi-Fi password in a restaurant and typed it into my Tablet from memory).

Of course there are other European countries that seem accepting too as far as conversations i've had with people from other European countries.

What is one thing about acceptance that would make a difference in the world?

Well I would like to see it made clear that Autistic people are not subhuman or less than human as Hitler would suggest, we are people just like anyone else, I would also like to make a point to that being Autistic is not a crime and being Autistic does not make us criminals and it really irks me when the ignorant act like Autistic people are automatically criminals.

A good portion of us on the spectrum are usually well behaved and obedient to rules as long as said rule is not unjustified, and most of us do not engage in criminal activity, in fact some people on the spectrum like myself actually take pleasure in mocking people who do really stupid things in the commission of a crime, such as when I watched Bait Car and noticed the excuses people made for why they got in the car to steal it.

I even had to mock the ones who saw Bait Car before and were still stupid enough to steal the car, I mean seriously, a lot of Autistic people like myself would know not to even get into such a car to drive it if we saw something going on, instead we would watch someone else doing this, and if we have cameras, we'd probably film the crime and hand video to the Police as evidence of the crime in the making or post the video on YouTube to mock whoever did this.

I must say I have enjoyed answering these questions, thanks and God be with those who are reading this.