Category Archives: Positive Things

How Could the World Be More Autism Friendly

Those who know me, and the readers who’ve followed long enough, are well aware that I like to focus on the positive. My last post was not the happiest because life has been hard and it is wearing on me.

We’ve been having conversations in the comments on this site and on Twitter. Talking about all of the problems and hardships Autistic people face in the world. In general I feel like focusing on your problems all the time can be a very dangerous thing. Shifting our attention to solutions tends to be much more effective.

Today I would like to write about my dream world – a world that is more friendly to Autistic people. Maybe some day, long after I am gone, it will be a reality.

It is a beautiful place, where there are always quiet spaces to get away when you need a private moment.  Every light switch has control for the light level and temperature, because everyone’s brain needs different lighting. (I like red-ish light and can not handle bright white, blue, or green). Natural light is used whenever possible and working from home is always an option.

In the place of my dreams you are always aloud to carry a laptop for notes, people don’t mind sending instructions via email, or handing everything over in writing. People wouldn’t call last minute meetings and would stop insisting on phone calls when an email is a perfectly acceptable form of communication.

Work schedules would be more predictable and people would not ask you to stay late for extra tasks at the last minute. (I just need to know when something is over – so I can conserve the perfect amount of energy.) Shifts could start at the same time every day and end at the same time every day (when you have insomnia one night working till midnight can throw off your entire week when you normally wake up early.)

Job descriptions would be more accurate so it is easier for us to determine in advance if we are qualified for a task. Employees would have input when job descriptions change and would be able to turn down new tasks that don’t suit their natural abilities.

Multitasking is a word that would disappear in my new world. Focusing on one thing at a time and doing it perfectly is far more efficient than doing several things at a time half-assed and in a rush. People would stop rushing you, and asking “can you multitask” in interviews – since most people don’t truly multitask very well even without Autism (even when they THINK they do).

Windows in large buildings could actually be opened so fresh air could be allowed in. Offices would have space for people who get cold easy and people who get hot easy so everyone could be comfortable.

Regular breaks would be encouraged and standing desks and exercise ball chairs would be more widely available so people don’t have to sit stagnate all day. Employers would stop valuing their employees based on how many hours a week they work and would focus more on dedication the quality of work turned in.

Office politics would disappear and work ethic would have more value than who’s ass you kiss. “Optional” work functions would really be optional (meaning your boss would never make comments like – “You weren’t at the last 3 office happy hours.” If something is necessary for a job it would be explicit not implied. If the happy hours are mandatory they should just say so.

Most importantly in this perfect new world everyone understands and accepts Autistic people. We don’t have to depend on unhealthy coping mechanisms like “passing”. Nobody expects us to act like everyone else.

It is a dream I have, a magical world. Some day I hope the world becomes more Autism friendly.

Autism’s Not So Bad – Why I Focus on The Positive

On this blog I share my difficulties so that others who have similar troubles will know they are not alone.

In life I try to focus more on the positives. It is better for me to focus on the things I can do versus worry over the areas I’m lacking.

I could beat myself up over my flaws until my self-esteem is in the toilet and I slip into a deep darkness. Trust me I’ve been there before and getting down like that is not helpful. Sure, I have limitations and disabilities but we all have troubles and obstacles to overcome.

When I was younger adults pointed out my flaws. Teachers and school highlighted all the ways I was a failure. I felt completely inadequate and was physically ill from anxiety.

My skills and artistic abilities were always discouraged. Nobody pushed me to peruse my talents. People assumed I would grow up and never make anything of myself.

It has taken years to recover from this trauma. The past few years have been the best years of my life – especially since discovering my Autism. The amount of self compassion needed to accept this truth helped me shift my thinking.

My Autism has given me quite a few gifts that I would like to highlight. These are the things I think about during my day. Reflecting on the positives keeps me going, making sure I don’t fall into a pit of self-pity. I have to keep moving.

I am extremely detail oriented (almost to a fault sometimes) but when doing the right types of tasks I am better than most at catching certain things.

My personality – these traits I believe come from my Autism. I am very loyal, honest, and self motivated. Above all things I value the truth.

I am a very dedicated employee and am great at following a list of tasks. I don’t socialize when I should be working and generally try to do work I love. I work hard and follow the rules.

Peer pressure does not get me. I am able to see when others are being illogical. I am a VERY logical person. I can also be calm when others panic (depending on the situation).

I have a bond with animals and nature. A walk in nature cures anything in my soul.

I’m not afraid to go against popular opinions – and will often comment when I disagree with them.

My perspective is different. Autism affects the way I intemperate the world so I have a unique perspective. This can be very helpful in a group when looking for new solutions.

I see music videos when I close my eyes and recall songs in my head like a jukebox. The movies come alive in full color. This is just magical. I also memorize songs and know all the words to just about every song I enjoy.

I can write in a way that comes from my Autistic experience. I’ve read so many books. As a child I read fiction, Stephen King, Dracula, and many more adult books. I remember the beautiful patterns in the words. I’ve read all the classics and now I read non-fiction. These things have rubbed off on me.

Patterns are everywhere and I see them. I see pasterns in everything – people, objects, concepts. Sometimes I get lost in them but I’ve learned to use these things as a guide for my life. It makes things more predictable – which most Aspies can appreciate.

Synesthesia – I enjoy mine but am not ready to put the experience into words. Sometimes it is distracting and even distressing. It made driving very difficult. Until about a year ago I didn’t even know there was a word for my experience. Still – I actually love this part of myself and would NEVER give it up.

So despite the days where I am sharing a painful experience, these are the things in my mind on a day to day basis. I remind myself every day of the ways I am blessed so that I am not overcome by darkness.

Hyperlexia – I’ve Still Got It

I’ve always been hyperlexic. My verbal comprehension has improved greatly since I was a child, despite my auditory processing difficulties. Even though things are much better – I’ll always be  hyperlexic.

It’s a good thing I LOVE reading.

Hyperlexia is a syndrome that is characterized by a child’s precocious ability to read (far above what would be expected at their age), significant difficulty in understanding and using verbal language (or a profound nonverbal learning disability) and significant problems during social interactions.

Hyperlexia – CSLD – www.csld.org/HyperlexiaDefinition.htm

It is beyond frustrating to have so much to say and not be able to express things in face to face conversations. When I try to talk it’s as if I know the information but my brain is holding back the words.

My arguments are ineffective and unpersuasive and the words come out making me sound uneducated and shy. I cannot beg or force the words. Nothing helps the words are unavailable to me.

I am not the person people see in these moments – I am the voice behind my keyboard.

The thoughts and information is still inside, even when I cannot express it as you stand in front of me.

I am so grateful for my keyboard. I am so happy that I learned to type and write in school. This has turned my Hyperlexia into more of a blessing . I am so grateful to have found my words.

I’m Not Normal – That’s Okay

My brain and body work differently than most people. That’s not really a problem until someone expects me to do things “their way”.

I do things differently and typically have to teach myself most things unless I have an AMAZING teacher.

This was a problem for me in school, because my teachers couldn’t understand “my way” any more than I understood the way they did things.

I see things differently in my mind than other people. First I think visually but I also have a way to access complex language when typing. I can think of words but I don’t think in words. The words are accessible but primarily my head is full of snapshots and videos. All my memories are videos but most of them have no sound.

I have sound memories too, but they are separate from the words and videos unless the sounds come from music. Music is an amazing world for me – I feel it so deeply in every inch of my body and brain.

I don’t remember words. They don’t stick – unless they are sung or repeated over and over and over again rhythmically. Sometimes I do this in my head if I have to remember something but if you ask me to repeat back to you something you just said to me – you are out of luck.

I don’t speak the way I type. I often spend a lot of time observing in the background.

When I do speak up, I keep things short, unless I am in a chatty mood or on a topic I love. Than I can ramble mindlessly forever and nobody can get a word in. (I try NOT to do this because I realize that it’s rude – another reason I stay away from alcohol.)

Humor makes life easier and being able to laugh at myself whenever I have a social mistake (because they happen EVERY time I am around my coworkers) has saved my life.

Before I would let the anxiety of trying to be “work appropriate” get to me. I did not trust myself. Now that I laugh things off – and in my head I say “Asperger’s” as cartoon caricature of me is rolling her eyes at me in my head.

I smile back.

I don’t blame myself for these mistakes but I try to learn something from every single one of them. Hopefully I will remember next time (or the time after that) not to make the same mistake. I remind myself that I am doing the best I can and move forward.

Self compassion.

I’m not normal but as long as I am doing my best – that’s okay.

Looking Back

Looking back on when I started this blog. Reflecting on the discovery of my Autism and the negative things that were all over the Internet.

 

I was worn down and depressed. Eventually, after the shock from all the negativity wore off, I began to look for positive people and articles.

 

Almost everything positive was coming from Aspies. Watching my positive peers helped me to shake off my darkness, but finding all of their videos had been difficult. Search engines seems to prefer big organizations over small blogs.

 

It should be easier for people looking online to find this first hand information – straight from the Aspie’s mouth.

 

We know what we are talking about. 😉

 

I started to collect posts that inspired me and began to look for new inspiring Autistics online.

 

Writing out my feelings helps me to put them into words.

 

It’s funny, despite being told that I am a fairly decent writer, I do not think in words in a very typical sense. Really I am a more visual thinker.

 

I can type out words if left alone to think, but having another person around can send my words flying out the window. Typing is therapy. Speaking is work.

 

This therapy saved me as I collected videos and articles that I wished I would have seen early in my Autism journey.

 

I wanted to create a life preserver. If you happen to be lucky enough to find me, you will also find the biggest collection of links to other amazing Autistic people online.

 

Nobody should drown in negative information. I hope that you use this site as a lighthouse in the dark. Shining the paths to many amazing voices.

 

With love,

“Anna”

10 Things I Struggle With Aspergers – Anna Moomin

Anna Moomin shared 10 things that she struggles with as an Aspie. I am going to share 5 of my own and as a bonus I’m throwing in another video she put up – Things I Like About Having Aspergers because both videos were just SO good.

Also I don’t like to focus exclusively on the negative.

5 Struggles I Have as an Autistic Person

Lighting / Florescent lights – I need natural light and like to sit in the dark. Lighting is my NUMBER one trigger for sensory overload.

Sounds – especially sounds that have movement. When sounds have movement I see and feel the movement inside of me. It is hard to explain but it drives me crazy and gives me motion sickness.

Alcohol – I used to drink at social events to help calm my nerves but my sensory issues made me stop. Drunk me has no filter and throws up from motion sickness. I don’t drink because I can’t.

Surprises / Changes to my Routine or Plans – I can handle happy surprises if I really like the surprise but even neutral changes / surprises can cause me to panic. It is an irrational reaction and I can’t help it. Predictability and routine are relaxing to me.

Conversations – They are a LOT of work for me ESPECIALLY with people who I don’t know well. If I spend an hour talking to my boss in a meeting I will feel worn out for the remainder of the day – and that is a one on one.

What she says about feeling hung over from socializing / talking to people is NOT an exaggeration. I really wish it was. That is burnout.

Spending too much time around my triggers can cause me to feel very sick (Autistic Burnout) – like Anna said a LOT like a hangover or a flu. I get run down and feel horrible.

Recharging My Batteries

In order to recover from the normal daily tasks I have to recharge. If I don’t get alone time I cannot recharge. It is very hard for me to have friends because having a full time job takes away all my energy and I have nothing left for personal relationships.

People do tend to take things personally when you are always turning them down. They don’t understand that I can want to be somewhere and still have to decline.

Anna Moomin has a GREAT YouTube channel. She has a lot to share and does a great job verbalizing her thoughts. Please subscribe to her channel for more great videos. I can take NO credit for her content.

Things I Like About Having Asperger’s

 

If You Don’t Read the Comments Section of this Blog

You really should!

This blog has grown an amazing community of Autistic people (and others). We have amazing discussions in the comments section and would love for you to join in. 🙂

Going Beyond Books to the ‘Whole Different Story’ of Living With Autism – The Mighty

Kerry Magro is an amazing voice in the Autism community. Following in the footsteps of the great Aspie writers and advocates before me I started my blog in order to share my own first hand experiences with Autism.

When I got my diagnosis and as I learned about Autism I quickly was turned off by society’s misconceptions about Autism and the way doctors pathologized us. Sure we have medical conditions and comorbids but the way they described the deficits in our very ways of thinking, often without explaining or focusing on the positive aspects of our Autism, sickened me.

Over the past few months I have been networking with other Aspies online, making virtual connections and encouraging everyone to write speak out and share more. We need to do this. We need to speak for ourselves.

One person cannot change the world but if we all speak up we can make a much bigger impact.

Read the full post here on The Mighty.

We have a saying in the autism community, “It’s easy to read about autism, but it’s a whole different story to live it.”

We are at a crossroads in our community today because there are countless people on the autism spectrum, along with their families and friends, sharing their stories in blogs, journal entries, books, documentaries and so much more. [. . ]

Because of that, I have a favor to ask of everyone reading this article today. The next time you are trying to learn more about autism, consider having people with autism speak about their experiences at your events. While reading about autism is important, listening to the experiences of those who have grown up with autism will give you a whole new outlook on our community. Hear their successes, their challenges, and you will learn about how wide of a spectrum we have out there.

Read the full post here on The Mighty.

#ActuallyAutistic

Am I Ready for an Autism Diagnosis?

One of the most common emails I get from readers revolves around one question. People reach out to me asking, “should I get my child diagnosed?” or “should I get diagnosed?”

Unfortunately I can not answer that question.

The decision to seek out an Autism diagnosis is a very personal one and you must search inside yourself and look at your own personal circumstances to decide if getting diagnosed is right for you.

Just because you are not ready to get diagnosed today does not mean you will not be ready to get diagnosed in the future.

I am diagnosed because getting a diagnosis eventually was right for me, but when I first discovered my Autism I was not ready to be diagnosed right away.

At first I was in denial and did not understand Autism. I was not ready to talk to a psychologist because I was still lying to myself that my symptoms were non existent or that there was some other explanation for them. Autism seemed so final I was not ready to accept it.

When I started to think about diagnosis I quickly realized that there was a very limited pool of doctors who were qualified or even had experience with adult women. None of the adult Autism doctors I found took insurance. If you do not live in or near a big city you may be taking a long drive to see a doctor.

Getting an adult Autism diagnosis can be expensive. I’ve had people tell me they paid out of pocket $800-$5000 to get diagnosed. Because a lot of the Autism specialists are out of network, insurance companies will often leave you with the fees.

Before I started reading about Autism and talking to other Aspies I had a hard time describing the feelings and things that were going on inside my body. Reading about Autism was like unlocking a key that let me start talking (mostly typing) about what has been going on inside me my entire life.

I have alexithymia. It is part of my Autism that makes it hard to describe my Autism. I have had to teach myself to describe my feelings because if I don’t consciously ask myself how I feel – I don’t know.  Before I started asking myself this question I never would have been able to explain what I was feeling because people always told me how I was feeling growing up.

People told me the wrong things about my feeling sometimes and because of my alexithymia I believed them. Because of this some of my feelings and emotions got confused. I needed to untangle this mess before I could accurately talk to a psychologist about my Autism.

Once I had finally straightened all of those things out I felt like I was ready for an Autism diagnosis.

I journal a lot and that has helped me tremendously in life. People with alexithymia should write. It helps us work out our feelings.

I took a 10 page paper to my psychologist explaining my life story without using any of the Autism terminology. (Doctors seem to be put off by laypeople who sound too scientific. They think we are up to something when we use big words.)

The doctor tested me and I answered her questions honestly. I was extremely nervous the entire time – afraid she would come back with a wrong diagnosis.

After our first meeting I had time to think on her questions and sent her another five page paper further explaining things I could not express face to face.

The way she had asked about stimming had confused me and I had under expressed how much stimming I actually do. (I need questions asked the correct way or I get confused sometimes.)

If you can get your doctor’s email address or bring in typed papers I would STRONGLY recommend doing so. Because I take in information and do not process it right away, sometimes on the spot conversations are impossible. I made a point to mention this to my doctor.

Tell your doctor EVERYTHING that you have trouble with. Make a list.

Autistic burnout (sometimes called Autistic Regression) is a real thing. All of the sudden all of my childhood sensory symptoms were back and worse than ever. It seems like stress and change can have a huge impact on this.

In the end getting a diagnosis was right for me when I started having trouble coping with the real world.

My diagnosis protects me from liability if I ever have a meltdown in public or have sensory problems that cause confusion. It lets me ask for small accommodations at work – like sitting in a quiet spot with natural light.

Now that I am diagnosed I can ask for things – small things that were refused before – and people are supped to give them to me.

I won’t ask for much. I don’t want to take advantage or draw extra attention. More than anything I just want to be comfortable in a world that was not built for me.

 

 

Asperger’s Girl- Pro’s and Con’s to getting a diagnosis

I am under the impression that getting a diagnosis, even as an adult, can be helpful but everyone is different and paying $1000 or more out of pocket to see a professional may not be an option for some people.

Before seeking out a formal diagnosis, I had already accepted my autism but realized that being diagnosed could help me to ask for things I needed and explain why there are some things that I struggle with. It protects me from liability and will allow me to request accommodation of future employers, airlines, hotels, and people around me and more.

Amazing AsperGirl Anja Melissa talks about the pro’s and con’s to getting a diagnosis. I can take NO credit for her video. Please subscribe to Anja’s channel on YouTube.