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I'm Autistic. I'm Not 'Normal.' And That's OK.

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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. Then I can ramble mindlessly forever and nobody can get a word in. (I try not to do this because I realize it can be 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 co-workers) 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 a 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 I am doing the best I can and move forward.

Self-compassion.

I’m not normal, and as long as I am doing my best – that’s OK.

Follow this journey on Anonymously Autistic.

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Stock photo by puhhha

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A Letter to the Ignorance My Son and Others in the Autism Community Face

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Dear Ignorance,

I feel like we’ve met before. You may not look the same, sound the same or act the same, but it is you. I’m sure of it. We met many years ago when my child was just a toddler. Then I bumped into you again during the elementary years. I’m pretty sure we were together briefly when my son was in middle school, and now, here we are meeting again when he is a teenager.

When I went to introduce you to my son, “Ignorance, this is Ryan, Ryan this is…” I slowly trailed off. I saw the look on Ryan’s face, and I knew that he too has met you before, probably more times than I care to count. Introductions aren’t necessary.

I have sat across desks from you, been seated next to you at restaurants and stood in front of you in the grocery line. At every chance encounter, you have made some ridiculous comment that angered, hurt and shocked me. It would have been so easy to just chuck a pencil, a spoon or a can of peas at you and walk away, but I knew if I did, you would keep coming around again and again, hurting my son and other autistic children and adults like him.

Each and every time we meet, I’m astounded by your ability to shock me with your lack of awareness and knowledge. It’s like you have a complete disregard for anyone who does not fit into the “normal” mold you have created. All the times we run into you, I try to be patient, I try to be kind, I try to educate, but for you, ignorance really is bliss.

Sometimes Ignorance, you are in a position of authority. You are suppose to set an example for others to accept differences and see past labels and stereotypes. You claim to want to help my child, you want to see him fit in and be accepted, yet you don’t really see him yourself. How can I count on you to help him when I obviously need to help you first?

What is most frustrating to me Ignorance, is when you are in a place of power or you are in a leadership role, you have an opportunity to shed who you are and provide an example of awareness, inclusion and kindness, but you don’t. I recognize that in some ways you can’t. I mean, being unaware is who you are, which is precisely why as his mother I don’t chuck the can of peas at your head, walk out, slam the door and give up on you. Giving up on you would mean giving up on my son, and that is never going to happen.

I could tell you that since my son and I have been at this for awhile now, we are sick and tired of the same old song and dance, but we aren’t. Yeah, sure some days we both are astounded by the depth of your obliviousness Ignorance, but the only way to stop you is to educate you. We won’t stop, no matter how many times our paths cross, no matter how much damage you do.

I know my son and I will continue to bump into you in various places. I’m not naive enough to believe you will go away, but I do believe that Acceptance, Awareness and Knowledge will one day pave the way for you. Until they do, I will do the work for them. I will lay the path for Acceptance, Awareness and Knowledge one step at a time, until you finally get it.

I may dread every time I see you coming, Ignorance, but I will not run away. I will not duck in a corner and pretend to not see you. I must educate you to see my son so that others around you will see him, too.

My son and I would like to say goodbye to you forever, but unfortunately, we know we will meet again. Each time our paths cross, you provide new insight into the depth of your insensitivity, which helps prepare us for the next time we meet and helps us to see how much more work needs to be done.

As much as I despise you, Ignorance, I have to admit that you inspire me. You make me want more — more education, more awareness, more acceptance, more compassion. You make me work harder so that my son and others with autism may not have to. I guess in some way, I should be grateful to you.

Here’s a head’s up, Ignorance — you are not bliss. You are harmful and unhealthy, and I really thought you should know.

I wish this was goodbye, but, I know it’s more like, until we meet again. My son and I will be waiting. We will be ready. We will prevail. You know why, Ignorance? Because Acceptance, Awareness and Knowledge will always have our backs. And with them, Ignorance cannot win.

Sincerely,
Ryan’s Mom

Follow this journey on The AWEnesty Of Autism.

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'Adulting' as Someone on the Autism Spectrum

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When I was 16 years old  only a year after I was diagnosed as being on the autism spectrum — I asked to get my driver’s permit. My parents were worried I wouldn’t be able to handle driving. They made me wait another year before they finally decided to allow me to try. It took what seemed like over a hundred laps around the local corporate center for me to even try to venture into traffic. But over time, I learned the main skills I needed. I passed my driver’s test on the first try.

When I graduated high school, I wasn’t ready for college. So instead, I focused on learning some more life skills while volunteering in the community. It took some time and hard work. But after working on this for a few years, I finally moved out of my parents’ house.

I still needed to pay the bills.

I didn’t settle on a perfect job right away. It took some time to find a good fit. Yet, after many practice (and real) interviews, I landed a part-time position that I have the ability to do well in.

And when I was finally ready, I decided to try going back to school. Yes, I’m only taking one class at a time. But I’m getting good grades, and I’m currently signed up for my third class!

I may be on the autism spectrum. But that does not mean I’m incapable of things. It may mean I do things a bit more slowly. It could be that I do things in a different way. But I’m still capable.

I can’t speak for others on the autism spectrum or predict the future in any way. I would like to remind parents of one thing, though. I want to tell parents to please, never give up hope. I needed a gentle push here and there, and it took some extra time. But I’m so glad my parents gave me a chance.

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Temple Grandin Answers Your Questions About Autism

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Dr. Temple Grandin is one of the greatest autism advocates of our time. A six-time author with a Ph.D. in animal studies, Grandin is a living example of the potential of the autism community.

We asked you, our autism community, what you would ask Dr. Grandin if given the chance. We took questions from autistic individuals and their parents, and asked Dr. Grandin her thoughts. Here’s what she had to say.

The Mighty Readers: What is your advice for motivating a child with autism who is not motivated?

Temple Grandin: Well, I’m going to assume that this is not a 3-year-old. For a 3-year old I can give you a standard answer, and that’s lot of early intervention. Now I don’t know anything about this child, so I’m just going to make up a child… Let’s say a fourth-grade fully verbal child. Motivate him through his fixations. If he likes trains, use that motivation – that interest in trains – to motivate mathematics, motivate reading. Play games involving trains, read about the history of railroads. Make an associative link back into his fixations and then keep broadening it out.

When I was in fourth grade, I would draw the same horse head over and over again. I was encouraged to draw lots of different things. But take their fixation and broaden it. Transportation is a real common fixation – trains, cars and airplanes – because of the motion. A lot of these kids really like the motion.

If you have a 2-year old that’s not talking, [first check if they’re] deaf, and [then] start early educational intervention – 20 hours a week. You’ve got to teach them words. And, the other thing you’ve got to teach these kids [is] how to take turns. That was taught to me with board games. They’ve got to learn how to wait and take their turn.

How can you help a child with autism cope with their fears?

TG: Well, I had a lot of anxiety issues. One of the things you can do is give them some choices. When I was 15, I was afraid to go to my aunt’s ranch, so my mother gave me a choice. I could go for a week or I could go all summer. Not going was not going to be one of the choices. Give the child some choices, but becoming a recluse in your room is not one of the choices. That’s one place that my family, my school, just drew a line, and that was just not allowed. You can say, “You can have a choice – you can do boy scouts or you can do robotics.” Give the child some choices, but you’re going to have to get out and do some things.

As an adult, how do you deal with sensory input? Has it changed over time?

TG: Yes, it’s gotten better over time. I still have problems with touch sensitivity. I mean, they seem to be cheapening up the clothes and making the cotton more rough. You know finding pants that don’t itch is getting to be more and more of a big chore. Sound sensitivity for me has just become a nuisance, but I still have a lot of problems with screening out background noise. I’m functionally deaf in noisy restaurants, and my hearing has gotten worse as I’ve gotten older. Sensory issues are extremely variable. Now some people have visual sensitivity problems, other people have touch sensitivity problems. My problems were mainly noise sensitivity, touch sensitivity. One of the areas I think is the number one area for research is how to treat sensory issues. It would be my big top priority, and in order to study these issues they have to be looked at by particular sensitivity problems – sound sensitivity, rough clothing sensitivity, problems with bright lights. If you blob it all together you’re not going to get any decent results.

What advice would you give parents whose children have recently been diagnosed with autism?

TG: Usually in younger children they get diagnosed because they’ve got speech delay. You have got to get into good early intervention, and I’ve got a book that’s very good for that, “The Way I See It.” Lots of short, easy-to-read chapters. There’s another book called “Autism Breakthrough,” if you’ve got to start working with a child now. If you have a kid that’s not talking, that’s 3 years old, don’t wait. Start working with this kid now, teach them turn taking and words. Do not let them zone out all day on electronics, absolutely not. If there is some game on a phone, that phone needs to physically be passed back and forth. These kids have got to learn how to wait and take their turn.

Now an older kid normally is diagnosed because he is getting bullied and having social problems in school and is usually fully verbal. I had friends that shared interests. Get them involved in Boy Scouts and FFA, in robotics, in art, in band, in theater – because with these specialized interests that’s where they are going to have friends. And I do a lot of discussion on that in one of my books, “Thinking in Pictures.”

Is handling fame and celebrity similar to coping with autism?

TG: Well, I figure it’s a responsibility. I’ve got to make sure I’m always on my very, very best behavior. I’ve always got to be on good behavior, no matter how tired I get.

How can parents help their nonverbal child communicate?

TG: Well, let’s say you’ve worked on this kid and he’s not learning to talk, then you need to get a communication device. There are some kids who are nonverbal who can learn to type independently and actually have locked-in syndrome – where there is a good brain hidden in there and they may not talk but they can learn how to type. A really good book to read is Tito Mukhopadhyay’s “How Can I Talk If My Lips Don’t Move?” Tito describes a sensory jumbled up world. I consider that book essential reading if you’re working with older children and adults who are nonverbal because you can understand some of the sensory issues these individuals are up against.

What direction do you think awareness should be focused on?

TG: We have different issues. The early intervention, the awareness, I think has gotten a lot better, but I still go to certain parts of the country where the child is getting to first grade without getting any kind of early education. They’re just allowed to zone out on electronics and the TV all day.

I think we need to start, also, focusing on what people with autism can do. The way I got my business started, I showed off a portfolio of my work. In the 1970s when I started in the cattle industry, being a woman was a much bigger issue than being autistic. Being a woman, I had to be five times better than a man. I’ve been horrified over the years on the big mistakes that guys can make on jobs.

How can employers help their employees who are on the spectrum?

TG: There’s a very simple thing that employers can do to help people that have developmental differences. If today, I was hired by Starbucks and I got to tear that coffee machine down, clean it and put it back together again, I would need a pilot’s checklist of the steps to clean it, tear it down and get it reassembled – because I do not have a good working memory. So for a task that involves sequence, I would need a pilot’s checklist.

Also, if they make a social mistake, let’s say they’re working in a retail store and they stand too close to customers, you’ve got to just demonstrate, “This is how you do it. Watch Suzy, how she interacts with customers and then copy that.” It’s like instructing someone how to behave in a foreign country.

How can parents explain the advantages of autism to their children?

TG: Find something they are good at. There are some people with autism that are very good at math or very good at art. My ability in art, when I was a young child, was always greatly encouraged. Build up on the thing the kid is good at.

Are there different kinds of autistic minds?

TG: I talked about this in my book, “The Autistic Brain.” The visual thinkers like me, there are art minds, the mathematical minds, more of the patterned thinkers – kids who are good at math, good at programming, engineering – and then the writer minds. These differences often show up around third or fourth grade.

How can people with autism manage anxiety?

TG: Us visual thinkers, we tend to be really anxious. I do take medication. I take antidepressants. Low doses of antidepressants absolutely saved me, and I discussed that in my book, “Thinking in Pictures.” Even though [the book] is old, that information is still accurate. Read the chapter that’s called “A Believer in Biochemistry.” Some of the worst anxiety problems tend to be in the kids with the art minds, the visual thinkers.

Questions and replies have been edited for length and clarity.

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Why I'm Voting for Hillary Clinton as the Mom of an Autistic Son

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This election is personal.

Like everyone else, I’m concerned about the economy, climate change, ISIS and national security. But what keeps me up nights most is family security. Specifically, the security of my autistic young adult son.

Which candidate will best protect his interests and help him achieve a meaningful place in society?

Not Donald Trump. Whether it’s dismissing vets with PTSD, mocking a Deaf actress or a New York Times reporter with arthrogryposis, vengefully withholding healthcare coverage for his nephew’s disabled infant, or making fun of Senator Harry Reid’s blinding eye injury, Trump treats people with disabilities as a punch line.

My son’s future is nothing to joke about.

It’s clear who will advocate for him. Hillary Clinton’s concern for the rights of the disabled has bracketed her entire career. Her first job out of law school was to go door to door for the Children’s Defense Fund to find out why so many children were missing school. She discovered that schools weren’t accommodating kids with disabilities. The documentation she compiled was pivotal in pushing forward the special education law that eventually became the Individuals with Disabilities Education Act (I.D.E.A.), the most important piece of civil rights legislation for children with disabilities ever passed in this country.

The special needs community desperately needs a champion. Services for disabled adults are abysmal. Children like mine exit the school system into a woefully ill-prepared, bureaucratized and difficult-to-navigate adult social service system charged with meeting their needs. My son graduated three years ago. He now attends a Medicaid-funded day program. He is not employed. I’m terrified for his future. I.D.E.A. guaranteed him an education, but after the age of 21, all the mandated educational supports and services vanish. Once that little yellow school bus stops coming to the front door, it’s like falling off a cliff. The system spent 16 years educating him, only to let him languish stuck at home in front of the TV.

He’s not alone. More than 3.5 million Americans are now believed to have an autism spectrum disorder; the Centers for Disease Control and Prevention’s estimates ASD affects one in 68 American children. The disability community isn’t a special interest group. A recent Rutgers study found that one sixth of the electorate is disabled, and the U.S. Census estimates that nearly 20 percent of the U.S. population has a disability. Americans with disabilities continue to be left out of the workforce. For those who are employed, too many are in under-stimulating jobs that don’t fully allow them to use their talents.

Clinton has framed this issue not just as one of health care benefits or social services, but as an economic one as well, focusing on full inclusion of disabled people in the economy. She has not only acknowledged the needs of people with disabilities and mental health concerns. She has specific, comprehensive plans and policies to address them. She is committed to fulfilling the promise of the Americans with Disabilities Act.

Her Plan to Support Children, Youth, and Adults Living With Autism and Their Families highlights the need for increased research funding, universal screening, diagnosis, treatment services, bullying prevention, improved housing and employment opportunities, and safety and legal protections across the lifespan. Her initiatives seek to integrate people with disabilities into the nation’s economy. This issue, she says, “really goes to the heart of who we are as Americans.”

Her plan includes provisions to provide tax relief to assist families caring for aging relatives, as well as members with chronic illnesses or disabilities. Disability advocates and scientists hail her comprehensive initiative as the most detailed policy document on autism in U.S. presidential election history.

Disability issues were front and center throughout the Democratic National Convention, which — symbolically — took place the same week we commemorated the 26-year anniversary of the passage of the Americans With Disabilities Act. Disability rights advocate Anastasia Samoza offered a ringing endorsement of Clinton: “In a country where 56 million Americans with disabilities so often feel invisible, Hillary Clinton sees me.”

I know she sees my son too. She has pledged to fully support “a group of Americans who are, too often, invisible, overlooked and undervalued, who have so much to offer but are given too few chances to prove it.”

Clinton is pragmatic. She has a record of reaching across the aisle and getting things done. Her plan fully takes into account the needs of our disabled adult population. It has the potential to be as far reaching and life-altering as I.D.E.A. My son deserves that most basic of human rights: a life without fear of abuse, one filled with meaning and purpose.

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A Letter to My Son on the Autism Spectrum

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Dear son,

You were diagnosed with autism when you were 4 years old. I didn’t know what this meant for you, for us. I was terrified, relieved and hopeful, all at once. At least now we knew why you were having the difficulties you were having and could give you the support you needed. The doctor told us autism would bring life-long challenges, but there were some things we could do to help you.

So it began: years of intensive behavior therapy, speech therapy, occupational therapy and physiotherapy. In the beginning, you seemed to wonder why we were putting you through what we were putting you through. I could see you felt hurt, betrayed, lost and confused. I questioned everything we were doing for you. Were we doing the right thing? Were we helping you or harming you? Was this worth the pain you were going through?

Then, slowly but surely, we started seeing a difference. We started seeing you cross one hurdle after another. You were more comfortable, more confident, more in control of the environment around you. You were doing well at home and at school. You had always been very intelligent. You excelled in academics now that you were better equipped to deal with the environment around you. The teachers couldn’t stop talking about how brilliant you were. You always came first in class. You finished your assignments in half the average time. You excelled in knowledge of all the subjects. You displayed an integrity of character well beyond your age.

As you grew older, you started finding it difficult to handle the increasingly complex social dynamics at school, and I watched you start withdrawing from the world around you. You asked me why you were not like the other children. You asked me why you found it difficult to do the things other children could do easily. I told you everybody had something they were good at and something they were not so good at, but you weren’t convinced. You realized there was more to it.

I knew, then, that you needed to know about your autism. You were 10 years old at the time. I was apprehensive about telling you that you had autism, but your response when I told you about it laid any fears I had to rest. You were extremely grateful and relieved upon learning about your autism. You thanked me profusely for telling you about it, because now you understood why you were the way you were, why you did the things you did, why you felt the way you felt, and you didn’t feel bad about it anymore; you didn’t feel like you weren’t good enough or weren’t trying hard enough. You realized it wasn’t your fault, and it seemed like a load had been lifted from your shoulders. I watched as you blossomed from that point onward.

Eventually, it was clear the rigid framework of conventional schooling wasn’t working for you, so we decided to homeschool you. I feel it’s one of the best decisions we made for you.

Your journey has not been an easy one, but it has been one of strength, courage and indomitable human spirit. You make me proud of you every single day through your resilience, your perseverance, your spirit, your strength, your courage, your integrity, your empathy, your clarity, your intelligence and so much more. You are and always will be my hero.

Love you with all my heart,

Mom

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A version of this post originally appeared on Rainbow in the Clouds.

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