Hi, I am autistic. I don't want to tell you my name because I am exteremely paranoid. I am fully aware of how irrational it is. I always feel like people are talking about me but I know in my mind that it's absurd. I mean I know that people are not talking about me any more than they are talking about other people.

The biggest thing for me about being autistic is that my mind just works way too slow. I function at a pretty high level, I just do it slowly. It can be frustrating at times because there are times when I really want my brain to work faster and it just wont. If I am doing something for the first time, it might take me a few minutes to get my bearings and get clued in to what needs to be done and it does make me look stupid at times.

The second biggest thing for me about being autistic is that I don't get a lot of social cues and I have trouble relating to people. When I learned I was autistic it really was a relief because it put all of my frustrations into context. It seemed like everybody else knew something I didn't and nobody was telling me. I realize now that it wouldn't have mattered if somebody clued me in, there are things that my brain just isn't capable of processing. I can understand a lot of concepts but my brain just can't apply it or put it into practice. It seems strange but that's the way it is.

The third thing about being autistic is that my emotions are always evident on my face. I'm sure that with practice I could probably learn to hide them but for the most part it just shows. This puts me at a disadvantage when dealing with other people because they can read how I feel. Of all the things about beign autistic this is the one thing I don't like.

I don't really tell people that I am autistic and most people that meet me just think I'm a little odd. I don't have many friends but I do have a few. I am also capable of aquiring and holding down a job. I've never lived completely by myself but I've had roommates. I've learned to recognize the limitations of my brain and I've also learned how to keep myself in situations that my brain can manage which I think is really important.

We all knew I was different. Friends and family used all sorts of words to describe it -- eccentric, emotional, quiet, weird, blunt, gifted, shy, geeky, quirky. Those words were mostly fine with me; I even added crazy to the list on occasion. I don't know what words other people used.

It's been less than a year since "autistic" got added to the list of descriptors. There were a few reasons no one realized what was going on sooner. For one thing I was female, and even now a lot of providers don't understand female autism. I excelled at school, so no one thought to look for something typically associated with delays. I was homeschooled, and since that CLEARLY meant I spent all my time chained up in the basement with no interactions with kids my age, no one thought to look for why I had issues with social skills. (*Disclaimer: Yes, that was sarcasm. Many autistic people enjoy using it*). I think the biggest reason, though, was that we had all only heard of autism as something bad, wrong, and terrifying that meant the end of everything. I had problems, sure, but little ones, nothing a little love and patience couldn't overcome.

Therefore, it was only as I was preparing to begin graduate school that my family and I pieced together all the little things that added up to something glaringly obvious in hindsight. The need for structure and routine, the problems dealing with groups, the anxiety, the sensory sensitivities, the lack of a filter, the face blindness, the difficulty discussing emotions -- all of them, symptoms that were chalked up to the way I was. I suppose that's true in a way. Of course, there were other traits I had that pointed to autism: loyalty, at times overwhelming empathy, rational decisionmaking, honesty, hyperfocus, curiosity, and intense passion for topics that interested me. I think it's important to emphasize the good points of being autistic, since everyone and their pet goldfish already know about the bad.

In some ways I'm glad I didn't get diagnosed until late in life. I didn't have to put up with the stigma surrounding autism, from well-meaning condescension to fear and malice. I was able to explore my passions without worrying about what I was and wasn't supposed to be able to do; as far as anyone I cared about was concerned, I could do anything I put my mind to. It also meant that I got the diagnosis on my own terms, though even then the psychologist I saw came close to writing off everything as a product of homeschooling before settling on Asperger's Syndrome.

In some ways I wish I'd been diagnosed earlier. It would have meant a lot to know that I wasn't the only one who struggled with faces and not just names, that there were other people who had to think about how to tell the truth without hurting feelings, that other girls like me also skipped makeup because it wasn't worth feeling it on their faces all day. In other words, I wish I knew I wasn't alone. Maybe then I wouldn't have felt quite as much pressure to pretend to be like everyone else.

I may have been resistant to peer pressure, but some expectations got pounded into me through sheer volume. Listen when people talk (and you're not allowed to get mad even if literally everyone else interrupts you). Judge people's intentions by what they say (and then they get mad at you because they meant something other than what they said). Smile for the camera, no not like that, show your teeth! (Thus why there are almost no pictures of me actually smiling). Unspoken corollary: "appear happy at all times at all costs" (hence why I still bottle up my feelings). Sometimes it feels like death by a thousand cuts, where even if I follow the strange rules I still get in trouble one way or another.

Long story short, my autism may have caused me problems, but a lot of them are because society expected me not to be autistic. It's something I wouldn't change if I could, not just because it's a part of me, but because of the positives listed above. Then again, I'm sure there are a lot of people out there who would say my perspective doesn't count because I've lived most of my life undiagnosed and because I couldn't possibly understand what life is like for people on the "low-functioning end of the spectrum." (I personally find that language problematic -- see this link (https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/) for a good starting point if you're interested. This website is also good: https://autisticnotweird.com/).

On a lighter note, here are a few of my special interests over the years: earthquakes, volcanoes, rainforests, caves, the Enigma Machine (in particular Marian Rejewski's role; Polish WWII codebreaking contributions STILL don't get the credit they deserve), UFOs, and planetary science. Probably also TV Tropes and Rejected Princesses if I'm being honest with myself.

I work as a Service Coordinator for infants and toddlers with developmental delays within California’s Regional Center system. The types of delays we provide early intervention services for range from simply monitoring the development of preemies all the way up to providing support for children who will be bed ridden and on a ventilator for their entire lives. In my experience, of all the developmental delays we help with, autism is probably the most stigmatized. Many people see it as an end to human potential. We see it as taking a different journey through human experience.

I won’t lie, optimism isn’t always easy, especially when you are dealing with parents.The hardest part of providing early intervention autism services often happens before the interventions even start. You see, many parents bring their little ones to us due to concerns surrounding speech delays. While the parents or the pediatrician may just see that the child isn’t developing communication skills, the speech pathologists, infant development specialists, and service coordinators doing the initial needs assessments may see signs of autism in the kiddo. Based on these observations, it is our duty to relate our concerns to parents who are often expecting to hear that their child just needs speech therapy. Frankly, I would rather be punched in the gut while being simultaneously kicked in the groin than tell loving parents that their kiddo is showing some signs of autism. Unfortunately, that is exactly what my job and the job of the wonderful speech pathologists and infant development specialists doing the needs assessment entails. We get to bring up the, “A” word.

Thankfully, the early start autism intervention programs (ESAIP in Service Coordinatoreese) that work with these little ones do wonders in both addressing the identified delays and providing the family with strategies that will help their child overcome whatever their obstacles may be. A formal diagnosic assessment for autism is often provided (by a child psychologist) while the child is participating in these programs. Understandably, the formal autism assessment is terrifying for many parents, but we always try to reassure the parents that even if the child is found to have autism they are still their child. These wonderful children are just as capable of laughing, learning, having friends, and loving their mommys and daddys as any other kiddo.

I guess the big take away is that having autism is not the end of childhood and the promise of a, “normal life.” What having autism is, in short, is a path through childhood and life that looks a little different. I look at it as taking a more scenic and eclectic route to get to where everyone else is headed. The good news is that the more we learn about autism the better the interventions become. So, there is no reason to write a human being’s potential off based solely on a few words taken from the DSM V. Oh, and for fuck’s sake, vaccinate your kids! There is no legitimate, scientific evidence that links autism to vaccinations.

We grew up together,

He was like any other kid

We spent our school years together,

I saw the obstacles he was forced to overcome

I witnessed the way others treated him,

Whispering all manner of insults

Behind his unsuspecting back

Using any chance they could

To cruelly poke fun at him

Despite everything,

He was exuberant, full of life

He always had a smile on his face,

Beaming bright like the sun

He found such wonder

In the small, seemingly inconsequential

Facets of life

To him, every living being

Possessed purpose,

A reason to be

While others ran at the sight of rain,

He took it as a chance to dance,

Reveling in nature's reign

Even at work, toiling away,

He had nothing but positive things to say

To this day, that boy is still my friend,

And after all these years,

His soul is still one of the purest

I've ever known

My daughter was born with a rare genetic syndrome called Cornelia de Lange Syndrome.

She is considered less effected because she doesn't have any health issues, limb differences and is quite tall and talkative compared to many others with CdLS.

When she was in her teens the geneticist wondered if perhaps she should be given a dual diagnosis of Autism. We never had her officially diagnosed but she definitely had similarities with some other Autistics and we attended the same therapy sessions or programs as many of her friends with Autism.

As she got older, I found it harder for her to develop and nurture friendships. The "neurotypical" kids were now involved in more mature, hormone driven adventures. They didn't share my girls interests anymore. Nor did she share theirs. But, she still wanted and deserved the social interactions and opportunities that her sisters had.

I found it frustrating and disappointing trying to arrange play dates or activities with other kids in her Spec. Ed class or on her Special Olympics Teams. Families were either, too tired, too busy, too scared or too unaware of the importance of friendships.

And so...

I started a group for Special Needs youth and young adults. I planned events and outings that would appeal to a wide variety of her friends. Activities that could be modified to suit all abilities, if needed. Things like Bowling, Cooking Classes, Dances and meet ups. I recruited some high school and college students who wanted to come out and help host the events. Who wanted to help make our time together more inclusive, social and safe. For anyone that was independent enough to stay on their own, they were welcome to. For others, they could bring a support worker along.

It started out with 5 or 6 friends and has grown into a network of over 200 families.

Of coarse we have a wide variety of disabilities or differences in our group but a large number of our members are Autistic.

It's through running this group that I have discoverd how truly neurodiverse we all are.

What I have learned is:

Autism (as with all "disorders", syndromes, diagnosis) does not present itself in any "typical" manner. Just because you know one Autistic, does not mean you know anything about another. (as with, men, women, Hispanics, Catholics, diabetics etc.)

The terms "high functioning" and "low functioning" are misleading and adverse. I am high functioning compared to what?

There are a lot of differing opinions in the Autistic community on what is acceptable or helpful therapy, treatment, wording etc. They are all right because we are all different and what works for one, doesn't work for another. How I feel or see things, is different than how you do.

There needs to be a TON more understanding and acceptance of Autism and ALL neuro-differences.

When some people hear Autistic they think, RainMan, Temple Grandin or Savant. Or they may think of someone who Doesn't have eye contact or stims a lot. Autism is all of these things or and none of these things and more than these things. Autism is PEOPLE. People who are quiet, people who are loud. People who are funny or shy or successful or rich or poor.

Autism is my daughter, my step sister and her husband and their daughter. Autism is my friend, my neighbor, my massage therapist and the cashier at my local store.

#TheSpecialFriendsNetwork

#MyHeart

Since fourth grade, my best friend has been a girl with not one, not two, but THREE autistic siblings, and while she doesn't have this, I've seen people treat her and her family like they're idiots. I've seen people talk to them with meanness disguised behind a false, cheery, high-pitched voice. And I don't understand. These people are the nicest, the kindest, the best people I know. They aren't idiots. They can draw, they can love. I've seen them enjoy the same things I do. So the world needs to redefine autism. Because it's not a disability. It's a gift. And just like any other gift, most people don't understand it, and people fear what they don't understand.

Ever since she was a little she was a sweet girl. With a bright, innocent smile and an enthusiasm that can be hard to find in my own apathetic soul.

Some of the scariest times are the times I don’t remember or don’t know. When she and I were little, someone tried to call Child Protective Services on us. That they would take her away is horrifying. They don’t know her. They don’t know us. How--why in the world do they think they’d know how to treat her better than we do when they don’t know her or us?

A conflict of beliefs is a dangerous thing. She’s homeschooled and isn’t injected with chemical drugs--it’s controversal and many believe that it’s going in the wrong direction. But we’ve found our way to help her. She has improved so much.

She has epilepsy. Or, that’s what my parents and friends call it. It’s nothing I’ve seen in anyone else. Her epileptic moments are small, quick, and occurs often. For most, they have seizures that are big and dangerous, dangerous enough to put them at risk--just this last summer my cousin was nearly died from having a seizure while driving. But, though they are dangerous, they are rare. Anywhere from weeks to years can pass before another epileptic episode.

The longest she’s gone without and episode was a few hours, I think. When she’s sick and can’t focus, it’ll happen every few seconds.

What happens is that she has a short blackout. She doesn’t know it happens. She’ll pause mid-sentence and her eyes will flutter as she’s gone for a second.

Because of this, she has a severe learning disability. While she can and will have the focus to sit down and do one thing for hours, much like myself, she has a hard time doing things outside her comfort zone, that is something she views as hard, or is something she simply doesn’t want to do. Her one-minded focus can produce a dangerous backlash that is almost like a withdrawal when my family’s forced to take away the thing she is focused on: manga, books, games, and movies.

As I see it, her learning disability is more from that she hasn’t lived half her life. When she was a young child, her epilepsy was terrible. Looking at her now, she has the disposition of a sweet ten-year-old who, like many pre-teens, can get sucked into what they’re doing and when pushed away to do chores resorts to throwing a tantrum.

She turns twenty years old in August. Her epilepsy has faded over the years as we learn the tricks to turning it around. We love her and I despise anyone who thinks they know better. No one knows better. No one. So just let her be with the family who loves and accepts her.

It’s scary, knowing someone tried to take her, my loving, sweet older sister away from me. But now she’s a legal adult and those fears have lessened. New ones crop up in the night as I listen to her toss and turn in her bed. These regard what the future holds for her and the pain she goes through.

I had never deeply considered if she views herself in a negative light until I figured out that This Is Me from The Greatest Showman is her favorite song. We had always been sure to press certain terms on her. “Different” and “special.”

But This Is Me is her favorite song. For those who don’t know, the song is sung by a bearded woman in the musical, singing about that despite she’s seen as a freak and different, she is who she is and she will no longer let anyone bring her down because of it.

Learning this little fact set my thoughts in motion and put things in a new perspective that I hope isn’t true.

My sister does gymnastics, as I do. In the past year she has improved so much and I can’t begin to explain how proud I am of her.

But she still learns things a bit slower than anyone else.

Our gymnastics coaches, for their own sake, organize lines by level order. In this way, it makes it easier for them to keep track of who’s learning what. My sister is at the front of the line: the lowest level. When someone new comes in and steps in front of her is a moment she can’t help but feel happy about.

Inevitably, that same new person will improve a bit faster and step behind my sister.

Little moments like these are constant reminders that she isn’t as quick as everyone else. That moment when her face falls and turns sort of blank makes me so sad. It makes me fear she’ll give up on the world and learning things that have given her joy.

Then is the fear of what the future may bring. The “what-if’s” and the “when’s” and the “how’s.” There are moments when I want to cry, “Why her?” Because she should have so much more.

I love her. She is a wonderful person who is loving and caring. I’m not one who likes using “deserve” since it’s biased and life is only as fair as you make it to be and the world isn’t fair, but I hate how nature pushed her back and gave her less opportunities than everyone else. She didn’t deserve this.

These fears consume can consume me on those dark nights. So, I try not to think about it. I try not to think about how unfair her biology is nor how lucky she is to have a supportive community. Either way, it makes me think, for one thought leads to another.

She’s my sister. She is who she is. “Different” wasn’t something I had really viewed her as for a long time. She was just my sister and she shall continue to being just that.

My sister.

#epilepsy