Monday, April 30, 2012

Leo and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with eleven year old Leo, who prefers action to conversation. He answered the first two questions below himself, otherwise the answers are mostly videos, photos, and his mother's observations, which she hopes are accurate -- and which are in italics.


Transcription:

What is your name?

Leo Rosa.

How old are you?

Eleven years old.

He is at the beach. Having the best time ever rubbing and tossing and swishing hands and feet in the pebbles.

Do you have a website?

You can read about Leo all the way back to July 2003, when he was first diagnosed with autism, at www.squidalicious.com.

What would you like a one-sentence description of yourself to say?

I imagine Leo's description of himself would include green straws, hiking, biking, swimming, croissants, jumping into his parents' bed for snuggles, trampolining, other peoples' elbows, being an iPad smartypants, and possibly Disneyland. (I would add that he is sweet and fun and sneaky-smart.)

Do you have any autistic superpowers? What are they?

Leo has innate musicality and rhythm (see video), and we suspect he has perfect pitch.


Leo never forgets anything important that he can mentally anchor with a visual -- geographic locations, people, etc. -- even if he hasn't seen them in years, even if he only saw them once.

He is fantastic at figuring out technical settings on iPads and computers, much of the time I have to go online to figure out scenarios he gets intuitively.


What are some situations that make you happy, or satisfied?

Finding a path to follow in a circuit, especially when it's a nice tight circle.

Being at the beach and playing in the waves. Indefinitely. Especially when they're strong. Swimming in general.

What are some situations that make you sad, or anxious?

Life-size characters like those at Disneyland are extremely disconcerting (he once almost punched Pluto when said character approached too quickly). He dealt with the anxiety of meeting Mickey Mouse by rubbing his hands together in Mickey's face, almost as if to ward the mouse off.


Because communication is hard for Leo, visual schedules (digital or paper) are really important to reduce anxiety, and help him understand what's going to happen next. Visual schedules that include choices are critical, so Leo is participating and isn't just doing what he's told.


New situations and transitions cause a lot of anxiety. Custom social stories can help; digital custom social stories with voiceover let Leo independently read the story, and at his own pace. He can then go over the sections on which he particularly needs reassurance, or just enjoys revisiting.


Are there specific topics you find particularly compelling?

Getting inside nice cozy spaces of any type is priority #1, whenever such an opportunity presents itself.


Leo focuses intensely when he uses his iPad. Though his favorite app selection changes all the time, right now his circuit is to cycle through Count TV, Write My Name, Seuss Band, Bug Games, UConnect, and Fruit Ninja.


What are your preferred ways to be social? 

Doing sensory activities together makes Leo wildly happy. In the photo below we are digging our feet down into smooth beach pebbles and trying to find each others' toes.


Swinging next to or dancing with someone while holding their hands is always nice. Singing together, especially call-and-response, is a favorite social activity.


What traits do you prize in a friend, or companion?

Leo likes easygoing people who let him be himself, and don't mind if he spends time on his iPad or doing his own thing for a bit.


He likes people who will follow along or alongside him when he's exploring a beach or hiking trail.

...by the way that is wet sand on his butt.
He likes people who are nice and friendly and understand that being curious comes in many forms and presentations, as does having fun and being engaged in an activity. He really likes people who arrive bearing long green straws.

 

Are there parts of your life you wish were easier?

I think Leo would very much like to be able to communicate his thoughts and desires more easily. We are constantly exploring ways to support his communication.

I suspect he also wishes it was easier to process the world around him, as when the input streams get overwhelming (e.g., too much ambient noise AND someone talking to him AND having a runny nose at the same time) he copes by either focusing on one element or function at a time and blocking out the others, or he becomes dysregulated and upset.


What's the next big goal you have for yourself?

Leo just learned to ride a two-wheeler bike without training wheels -- it was part of his IEP. He seems incredibly proud of himself. Now he just needs to master braking. 


What does bliss feel like to you?

Leo seems to be blissful when riding the twirly ladybugs at Disneyland, or swimming, or doing any of his favorite activities, really -- he's a happy kid in general, and gives himself over completely to his activity of the moment, so when he's happy, he's really, really happy.



As a footnote about Leo: He is a loving boy, and he is very loved. Even though he doesn't always like posing for photos. :)

Sunday, April 29, 2012

Mustafa and Autism Acceptance Month

Mustafa & Kerima
We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking Mustafa, who loves to swim. His mother Kerima Çevik rephrased our Slice of Life questions so Mustafa could answer them using the iPod app Answers Yes/No.


Is your name Mustafa Nuri Cevik?

Yes.

Is this your favorite website [points to http://www.redfishsoup.com/]?

yesyes.

Do you have any autistic superpowers? 

no.

Are you happy today?

yes.

Are you upset when there is too much noise?

yes.

Do you like your iPod?

yes yes yes.

Do you like to see other people?

yes. no.

Do you have friends?

nono.

Is your life hard?

no.

Would you like a hug?

yesyesyes.

What does bliss feel like to you?

Jason and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with fourth grader Jason, whose father blogs at onedadsopinion.blogspot.com.

Do you have any autistic superpowers? What are they?

Reading.  If you count a twelfth grade, I think, reading level as a fourth grader.  Also I consider myself a brilliant writer, but I prefer to be tapping keys on the keyboard (I am a touch-typer) than hitting the pen and dipping it on the page, too tiring. My weakness? Get the P.E. out of my head.

What are some situations that make you happy, or satisfied?

When I accomplish a goal such as learning to touch-type or, I must admit, beating a level on a video game, but I do feel satisfaction a lot. Also, having a good memory makes me feel satisfied.

What are some situations that make you sad, or anxious?

Mostly a death, a natural disaster, a sad memory ... And to be truthful, I am actually quite a worrier, so I always kind of keep on my toes and look out for things, I must say. Also, something that makes me sad is having to eat vegetables. I know.

Are there specific topics you find particularly compelling?

Eh, computer engineering and typing and reading is the tip of the iceberg. Technically thinking, also I like some sports such as swimming and tennis, and dodge ball (but only when I am throwing and not doing the dodging.)

What are your preferred ways to be social?

Personally, I am kind of anti-social, and I prefer the company of myself to a group, but I converse occasionally, I guess. But I am adapting, though to socializing, but I'm still kind of shy.

What traits do you prize in a friend, or companion?

With my few friends, I basically prize everything, mostly, I say. Everyone has their advantages, weaknesses, disadvantages, strengths ... I understand that.

Are there parts of your life you wish were easier?

Mostly one thing -- Homework. I'm not joking. Also, I wish arithmetic was easier, and definitely I wish my shyness would evaporate.

What's the next big goal you have for yourself?

To kind of improve my plots in my stories (I mean, a castaway story with a professor living on a cliff who only gets a paragraph isn't pathetic?). Also, I want some more exercise (that goal doesn't have much progress).

What does bliss feel like to you?

Bliss ... When I listen to music. No, not music with words. I am not a big addict of those. Whether I listen to music during a duel during a movie, to some classical music, I just am a fan of music. Also, a hot chocolate or a slice of pizza with some friends makes me feel lots of bliss.

Jaden and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with entomology academic & enthusiast Jaden, who is also a tattoo collector and musician.

What is your name and age?

Jaden. I'm 31.

Do you have a website?

Several:

What would you like a one-sentence description of yourself to say?

Entomologist, musician, and tattoo collector.

Do you have any autistic superpowers? What are they?

I can play any instrument I pick up at an above average level within thirty minutes of trying it for the first time. I can learn any song on any instrument in under an hour. I can take a song from idea in my head to finished recording in under two hours. I can learn anything about bugs. I can work with any arthropod without scaring it. I can study any minute detail of a bug for months or years without getting tired (which will make my PhD project very easy!).

What are some situations that make you happy, or satisfied?

Working with animals or music in a 1-on-1 setting. I really look forward to the day, each week, where I feed my bugs (4 roach colonies, 3 centipedes, 1 spider, 60 tarantulas, 1 scorpion, 80 millipedes).

What are some situations that make you sad, or anxious?

Anything social, especially having to talk on a phone. Also, not being able to take care of something when I'm ready to do it (which usually means it won't ever be done).

Are there specific topics you find particularly compelling?

Arthropod taxonomy. Trying to figure out the evolutionary relationships between species, then naming and categorizing them is absolutely heaven to me. I could spend my whole life on this subject and really enjoy myself.

What are your preferred ways to be social?

Via Twitter or over a game of Magic the Gathering. Twitter limits me running off at the mouth, and Magic gives me something else to focus on.

What traits do you prize in a friend, or companion?

Honesty, loyalty, intelligence, and a good sense of humor (especially for REALLY bad jokes).

Are there parts of your life you wish were easier?

Yes, several. Everyday things that others find to be so easy are a nightmare for me. Dealing with government agencies, making phone calls, scheduling, grocery shopping, making important purchases, dealing with companies who take advantage of me (this is a huge problem for me), etc. My parents helped with these before they died, then a friend took over but he doesn't talk to me anymore. I've been on my own for about two years.

What's the next big goal you have for yourself?

Finishing my undergraduate degree, then moving to New York to start my PhD.

What does bliss feel like to you?

Being able to just relax and do things at my own tempo for a while. Nothing is better than a summer break from school where I have nowhere to be and nothing to do. I spend my time reading, writing music, playing with my dog, and working with my bugs. Everything is calm and quiet. It really doesn't get better than that.

Saturday, April 28, 2012

Hend and Hamza and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with future Condor Rescuer Hend, and her digger-loving brother Hamza. They were interviewed by their mother, Emma Apple.

----

Emma writes: Hend. Almost seven, diagnosed with Asperger's at five. Has a giant imagination, loves condors and birds in general (to a lesser intensity), intent on becoming a 'Condor rescuer' when she grows up.

What is your name?

Hend.

Do you have a website?

Yep, Little Miss Sunshine (http://www.facebook.com/sunshineproject)

What would you like a one-sentence description of yourself to say?

I love Condors because they are cute.

Do you have any autistic superpowers? What are they?

Yes I do. My superpowers are noticing someone with autism, understanding how they feel. My super eyesight. My hurt power: I can't feel a thing. And many more.

What are some situations that make you happy, or satisfied?

Nice food and cake and when I turn 7 I'll be satisfied and happy.

What are some situations that make you sad, or anxious?

Sometimes when Andi, a kid from school that I like, is absent and she chooses me every time and then no one plays with me and I spend the time sitting on the step with no one to play with, everyone keeps playing with their stuff.

What are your preferred ways to be social?

Playing and eating together.

What traits do you prize in a friend, or companion?

Andi always plays with me. [Emma: Andi is her friend at school, she gets on well with the other kids as far as I've been told but I don't think she has any friends she plays with regularly besides Andi.]

Are there parts of your life you wish were easier?

I wish I got all the stuff I wanted. Eating everything I want playing with all the stuff I want. [Emma: Don't we all!.]

What's the next big goal you have for yourself?

Winning each game. [Emma: Not sure what games we're winning here, but there you go.]

What does bliss feel like to you?

It feels like laying on a cozy bed and playing with a friend and loving Allah more than anything else in the world -- which I do. [Emma: She's always has a strong attachment to and understanding of our Muslim beliefs and values.]

----

Emma writes: Hamza is almost five, diagnosed with autism (early onset Asperger's, but he had major language delays) at four. Has a wonderful laugh, loves insects, vehicles (especially of construction variety) and the moon. I had to reword many of the sentences so he understood the kind of answer I wanted.

What is your name?

Hamza

Do you have a website?

Yeah I'm drawing a road.

What would you like a one-sentence description of yourself to say?

I play with a digger.

Do you have any autistic superpowers? What are they?

Yeah! My superpower is about the one I saw, a digger. A digger near the supermarket.

What are some situations that make you happy, or satisfied?

Diggers...

What are some situations that make you sad, or anxious?

Monsters, some stickers make me sad because I don't really want them.

What are your preferred ways to be social?

I like to play with the girls. I want to play with each other. [Emma: He's always following little girls at the park, boys make him nervous.]

What traits do you prize in a friend, or companion?

To play with each other. [Emma: Hamza is very interested in other kids but he doesn't know how to connect with them and they usually don't try to connect with him. I'm a bit concerned about bullying at the moment.]

Are there parts of your life you wish were easier?

Yeah.

What's the next big goal you have for yourself?

Play with diggers...

What does bliss feel like to you?

Diggers make me happy.

Friday, April 27, 2012

Jason Ross and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with Jason Ross, who has an infallible internal compass.

What is your name and age?

My name is Jason Ross and I am 32 years old. In two months I turn 33! My closest connections like family and friends call me J.

Do you have a website?

Yes, www.drivemomcrazy.com

What would you like a one-sentence description of yourself to say? 

To quote Popeye, "I am who I am and that's all that I am, I'm Popeye the sailorman."

Do you have any autistic superpowers? What are they? 

Yes! I have the power of direction. I know where I am and don't ever get lost. Also I have a very strong Visual mind where I can learn to do things if I visually see it and imagine it in my mind visually.  Although we all have talents to give to the world no matter who the person is.  Any one is meant to do something important in life.

What are some situations that make you happy, or satisfied? 

Knowing I am with a person who really wants to be my friend and I can really connect with.

What are some situations that make you sad, or anxious? 

Situations that make me sad are when I see people who like to manipulate for their own gain rather than for everybody.

Situations that makes me anxious are being in unfamiliar large crowds like in urban settings, adapting to the initial changes in my life as they approach, loud noises, and speaking to someone on the phone. I also find derogatory language and confrontations makes me extremely anxious.
 
Are there specific topics you find particularly compelling?

Disability rights, acceptance, medical ethics in relation to many things like how a doctor is supposed to be a listener, and anything related to spirituality or Jewish mysticism.

What are your preferred ways to be social?

On the internet or in person at the JCC in Manhattan's Adaptations program (www.adaptationsonline.org, which should be a world-wide phenom for all people around the world with disabilities to enjoy since it helped me) or meeting new people at a conference for autism or Cardiovascular Ultrasound!

What traits do you prize in a friend, or companion? 

Trustworthy, supportive, non-judgmental, and a person I can talk to who I can really connect with.

Are there parts of your life you wish were easier? 

I wish it was easier to be around other people who just don't understand me. I also would not want to be continuously anxious about life.  I would just like to one day move forward without the extreme anxieties I feel. For this purpose, I meditate as much as I can during a week to relieve as much anxiety as I can.

What's the next big goal you have for yourself? 

I would like to make Autistic Artistic Carnival on Drive Mom Crazy blog the biggest hit in getting any Autistic person from around the world to have their moment to shine to build our confidences.  Also my greatest goal would be after I have achieved my integrity, respect, fulfilled my life's dreams of helping others, and enjoying independence moving each day forward: to one day become a shining bright angel from heaven always looking down seeing a peaceful world.

What does bliss feel like to you? 

Knowing I have helped a person or animal in need would make me feel so happy. I also find bliss over imagining myself as an angel in heaven in the far off future. I am joyful when I draw fantasy creatures and obsess over many of them.

I will feel more bliss when society can accept people for what it's worth and nobody is left out.  There is a place for every one and the beauty of life is how every one is similar.  We all also have our differences which is what makes life unique. Nobody should be mocked, bullied, or ridiculed. I feel happy when I see people who really do care about what they say or do. I also meditate as much as I can during the week so I can feel calmer, relaxed, and more set to reach my goals. Hopefully I can finally get to Autreat this year!

The "Greatest Love of All" by Whitney Houston and "Simply the Best" by Tina Turner are some of my favorite songs. May we all succeed one day in our future as an angel who flies with our wings spread out to always enjoy the essence of who we are and what makes all of us want to love every moment we are here.

Vicky and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with intuitive music enthusiast and autistic autism parent Vicky.

What is your name and age?

My real name is Vicky and I'm 33. Online, I use the pen name "TG."

Do you have a website? 

twitter.com/outoutout

What would you like a one-sentence description of yourself to say? 

American-Australian queer Autistic Pethead record-collecting parent. (Note: a Pethead is a 'hardcore' Pet Shop Boys fan.)

Do you have any autistic superpowers? What are they?
  1. I can play piano by ear. Pretty much any tune I hear, I can replicate, but it only works when I'm not trying to read music. For some reason, I can't read notes on a page and translate them into sound in my head.
  2. I'm pretty good at reading maps. There's an old family story about me helping my grandparents find their way back to their campground after we got lost in Gettysberg. I think I was 12 or 13 at that time. 
What are some situations that make you happy, or satisfied?
  1. Being totally alone -- no spouse, no kids, no time constraints, absolutely nothing at all that I'm required to do.
  2. Listening to music. It's hard to describe, but I've got an entire universe in my mind, built around the music I hear. And if I hear a song that fits so perfectly into that universe, it generates all kinds of images, and I can't help but ... dance!
  3. Record stores. Looking through stacks and stacks of vinyl for a hidden gem. Or, finding a rarity on eBay and getting it at a really good price!
  4. Having an epiphany about something that I've misunderstood for years. I truly feel that I don't completely lack the ability to understand social cues, it just takes a whole lot longer to figure things out.
What are some situations that make you sad, or anxious?
  1.  Meeting people for the first time, or seeing someone I haven't seen in a very long time. I don't know why this makes me anxious. It's only the anticipation, though; once the person arrives, the anxiety goes away. 
  2. Public speaking, singing, or praying. 
  3. Going to 'Autism'-related events. As the parent of two autistic children (ages 6 and 5), I'm expected to attend meetings, socials, and support groups for other parents of children on the spectrum. I'm expected to look, behave, and believe all the same things as the other Autism parents in my community. But I'm not like them, I don't believe my children or I are broken/damaged/in need of a cure, and I'm always having to bite my lip or escape to the bathroom in case I have a meltdown of my own.
  4. Posting comments on websites. I usually don't go back to read responses. Not only am I afraid to read how people will react, I'm also afraid that I will fall into the trap of arguing with people ad infinitum. I don't want to do that.
  5. Hearing about abuse or death of a child.
Are there specific topics you find particularly compelling? 
  1. Pet Shop Boys. To relate 'why' would take at least another five pages! I guess I'm fascinated by their entire ethos. I'm 99% sure one of them is an Aspie himself, and that's been sort-of comforting to me.
  2. Bullying - of adults and children alike. 
  3. Rules of etiquette, and how they differ between cultures.
  4. Music chart performance of albums and singles, particularly in "the rock era."
What are your preferred ways to be social?

Either online or 1:1. Talking to more than one person risks becoming complicated unless I'm already comfortable with everyone involved.

What traits do you prize in a friend, or companion?

I've always looked for someone who can be the Yin to my Yang. Someone who is loyal, forgiving, kind to children and animals, and authentic. It's sad, but I can count on one hand the number of times I've found true intimacy with another person. More often than not, I will feel a connection while the other person sees me as (at best) just another acquaintance with whom to make small talk, or (at worse) someone to be used and then tossed aside.

Are there parts of your life you wish were easier? 

I wish I didn't have crippling anxiety in average situations. I wish I could "pass" better than I do. Actually, I wish I didn't have to "pass" at all. I wish people wouldn't look at me and assume that I must be soooo high-functioning because I can write a coherent sentence, or because I managed to have a love life and reproduce. You have absolutely no idea what it took to get me where I am today. Sometimes, I wish I could actually believe all the nonsense about cures and disease, because then maybe I could tolerate all of the Autism functions in my community, and maybe the other ladies would want to be friends with me. Or not. sigh

I wish it was easier to be myself.

What's the next big goal you have for yourself? 

Well, both of my kids will be in full-time school by July (I live in Australia), so my next big goal is to find out what I really want to be when I grow up! I have a degree in Business Administration, but I haven't used it in seven years, and I don't think I want to be part of that world anymore.

What does bliss feel like to you? 

Unconditional love and acceptance.

Kenneth and Autism Awareness Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with Monika Brooks of www.mochaautismnetwork.com. She is the mother of Star Wars aficionado Ken, "Da Youngsta," who is 12 years old. As he's not a fan of being interviewed at length, Monika is handling the introductions.

What would you like a one-sentence description of yourself to say?

My one sentence for my son would be: His Awesome will Astound you...

Do you have any autistic superpowers? What are they?

My opinion is that my son's powers include the ability to question EVERYTHING and challenge the norm.

What are some situations that make you happy, or satisfied?

My son seems to be happy while reading about star wars or watching star wars

What are some situations that make you sad, or anxious?

My son seems the most anxious when attention (bad or good) is geared toward him in any way.

Are there specific topics you find particularly compelling?

The items he finds most compelling are Maps, Star wars (any version), Legos... Oh, and Lego Star Wars.

What are your preferred ways to be social?

He is most social around his younger relatives. But if you are doing anything Star Wars, he will talk with you.

What traits do you prize in a friend, or companion?

I asked him about his friends and he said, "I like the people that like me even though I'm weird."

Are there parts of your life you wish were easier?

He is still working his way through the Diagnosis, he says most times, " I wish folks wouldn't say "autism" so much. I'm a kid too"

What's the next big goal you have for yourself?

He is still working on goals. But he seems to like the Basketball camp/clinic at the YMCA, and he says he wants to make more baskets

What does bliss feel like to you?

He seems happiest when he is listening to music

Thursday, April 26, 2012

Paula C. Durbin-Westby and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with Paula C. Durbin-Westby who has been running an Autism Awareness Day and Month campaign all month in the name of "ACCEPTANCE, not tolerance, not 'yes, but...,' just acceptance. Pro-neurodiversity, pro-supports and services, against 'cures.'"

Paula also recorded a video version of her answers to our questionnaire, for greater accessibility.




What is your name?

Paula C. Durbin-Westby- I like the C.- it’s a really pretty shade of reddish-orange.

Do you have a website? 

I have several blogs, the main ones being autismacceptanceday.blogspot.com and paulacdurbinwestbyautisticblog.blogspot.com Facebook is also kind of my website. ;)

What would a one-sentence description of yourself sound like?

I am intensely focused on autistic activism, music, and homeschooling my child, sometimes all three at once, with a bit of visual art thrown in.

Do you have any autistic superpowers? What are they? 

I do. They are not too spectacular, though. These are things that are not in the DSM but that many Autistic people have that are kind of different, unusual, and sometimes maybe helpful.

I have had a hearing test that indicated that my hearing was 10% above normal, and I used to tune pianos and pipe organs, and my eye doctor once said that the worst my vision could have been when I was a child was 20/10, helping me to be able to draw things in a lot of detail.

I started playing the piano when I was four. My mother said I had been asking her lessons for years, at that point.

I have hyperlexia -- I could read at a very early age, with comprehension, like many people who are hyperlexic do, and I read books and write indexes for a living. My mother says no one knows how I learned to read --  I could just do it.

I have synesthesia for colors and sounds, and music notes and colors, and letters and colors, and some other stuff.

I am an artist -- I can draw many things easily, although I need to work at it to make it happen on a regular basis, and I have not done that for quite a while.

I have a partially photographic memory, but not for faces!
 
What are some situations that make you happy, or satisfied? 

Stimming!

Feeling like I have made a (positive) difference in someone’s life.

Playing a piece of music without hitting too many wrong notes, and making it sound musical -- that’s not easy with my visual processing, motor coordination, and concentration difficulties.

Singing! (La!)

Writing an index and having the author and/or the publisher like it.

Having my son come up and give me BIG hugs and tell me he’s being the Temple Grandin squeeze machine.

What are some situations that make you sad, or anxious?

Recently, it’s been that people don’t understand the seriousness of jumping to the defense of someone who murders a person with a disability. I have been very sad about that. Sometimes when I talk about this, I get positioned as a “self-advocate” only, erasing the fact that I am also a mother speaking knowledgably about this topic.

I am anxious for the future of children who are being propelled into earlier and earlier “intervention,” hoping to make them non-autistic and potentially causing them trouble later on even if they give the outward appearance of “improvement.” Let them be kids, Autistic kids!, at the same time they are being given educational opportunities (it’s all about learning things, so I call it education, not “intervention”) that will work for that individual Autistic person.

I get anxious when I put a potentially controversial idea “out there” into the autism or the research community, or other community, and don’t know how it will be received. Once it is out there, whether the comments are negative or positive, I try to work with and respond to questions and comments in a constructive way. But right before I put out a new idea --  that’s nerve-wracking, wondering if people will think I have jumped off the deep edge this time! (which I think means the same as “going out on a limb,” which is seen as dangerous and not necessarily the circumspect thing to do!).

And, aftershocks make me anxious. I live at ground zero of the August 23 2011 east coast earthquake and we are still having some significant aftershocks seven months later.

Are there specific topics you find particularly compelling?

Autism Acceptance Day! And Autism Acceptance Month, and this year, International Autism Acceptance Year, April 2012-April 2013! And, in general, the creation of Autistic and supporter communities. The Autistic community and our supporters have developed events, holidays, and other expressions of community involvement. Autistic Pride Day was started a number of years ago by the group Aspies for Freedom. Autistics Speaking Day began in 2009, the creation of Corina Becker and Kathryn Bjornstad-Kelly. Larger in-person events include Autreat.

On the other hand, we need to remember the difficult, and even horrifying, times. On Friday March 30, people in many cities attended candlelight vigils to mourn and remember people with disabilities who have been murdered by family members or caregivers. That vigil effort was organized by Zoe Gross of the Autistic Self Advocacy Network. The vigils were sparked by the murder of George Hodgins, age 22, by his mother. A virtual candlelight vigil was created, and this is something our community does well— including people who cannot be present in person but who wish to participate. As with other minority communities, we are creating a sense of identity, pride, and accomplishment, as well as a time to pause and reflect, as a way to build upon our strengths, learn to work together to promote our own interests and concerns, and ultimately to foster a greater societal acceptance of people with disabilities including autism. Sadly, on the day after the March 30th vigil, Daniel Corby, age 4, was murdered by his mother. She said she did it because he was Autistic.

We clearly still have a lot of work to do to create acceptance of Autistic people.

What are your preferred ways to be social? 

I like to communicate online, in writing. Speech is my AAC; writing is my main form of communication. Not the other way around. Speech is really clunky for me, although at times I give the appearance of being quite vocally articulate. (Oh, by the way I am reading all of this from a script… except this sentence…) Recently I walked up to someone who was sitting in his car, with whom I wanted to “talk.” I asked him to take out his cell phone and I was going to stand there and text back and forth with him, with the car window rolled down. But, he had forgotten his phone. I also grab a pencil and paper when I can’t speak. I can’t speak at least several times a week, in a major way, and several times a day, but a lot of those aren’t noticeable.

Hmmm…. You said “social” and I went off on communication. Social? Social? That thing where you spend time with a person, in person? I like to do things, specific activities, with people. I don’t like “just hanging out.” So, with my choir, I like to sing, direct, work on music. With my choir members, if I am spending time with them outside of choir? I like to still do music! I like to work on advocacy initiatives and projects with people. It all sounds like work, doesn’t it?! I like to spend time with children, with my son and his friends. That’s the main kind of “real” socializing I do, hanging out with moms and kids I like. It is very relaxing, and although many adults say “What do you do for yourself?”, and look mystified when I say “I hang out with my kid,” which is the last thing they’d think of doing for themselves, that’s what I enjoy the best because I don’t get to spend enough time with him and a few years ago, I was working so hard I got to spend hardly any time with him. That was the most difficult period of my life.

What traits do you prize in a friend, or companion? 

Honesty, directness, even when it is harder to take. Do not sugar-coat stuff; I won’t understand you anyway, most likely. I prize people who believe that my truth is my truth, even if they have a different perspective. I prize people who encourage me to be the best Autistic person I can be, including music, writing, art, child-rearing, whatever Autistic thing I am doing (Autistic because it’s me!).

Are there parts of your life you wish were easier?

Oh yes. I wish my financial situation was a lot better. It is bad enough to be frightening, and at some point, poverty seems fairly inevitable. It causes me almost constant anxiety. No, it’s not anxiety caused by being Autistic; it’s anxiety caused by an untenable financial situation. Not everything that goes wrong in the world is caused by autism! (I say this because sometimes people don’t look out of the “autism world” at other things that could be taking place.)

What's the next big goal you have for yourself? 

After that last answer, I should say “Getting a job.” I do have two part-time jobs, but my financial situation is bad enough that they aren’t enough. I am currently doing some marketing, which is something I did not have to do for almost fifteen years. I had so much work, I turned down about 15 projects a year, even with no dedicated marketing efforts.

Leaving aside the job question for a moment, what I really want to be able to do is provide more educational experiences for my child, including me being able to spend more time working with him on his projects. I am homeschooling him, and wishing I could spend more time just doing that rather than trying to balance several jobs and my advocacy work along with it.

I want to write an index that will win the H.W. Wilson Award for excellence in indexing! Some day…

I want to be an even better organist and choir director.

I might want to write a book, but I’m more likely to write articles for inclusion in collections.

I want to do more public speaking.

I don’t have one, huge, overarching goal, but a lot of things that I am constantly working on. My writing is very important to me, and I have become a much stronger writer in the past six years, since starting to write about autism.

What does bliss feel like to you? 

Being close to my son, snuggling up and reading with him. Hearing him say of my speech production, which can frustrate me if I get stuck on one word, “Mommy, stuttering: It’s a way of life! Don’t ever be mad at yourself because you stutter.” And, “Autistic moms are the best moms!”

Other blissful things are playing the organ! And singing! And seeing shiny things! And, green!

Sometimes I can be right in the middle of worrying about how to pay the bills and I will see a sparkly rainbow from one of my hanging crystals, and I will be filled with ecstatic joy! And, I can’t even worry during that time. I know; I’ve tried it, as an experiment. I picked something to worry about, on purpose, which is not too hard to do, and then I would look at something shiny and try to keep worrying, like the ocean, the sunlight on the ocean or something else shiny, and I could not do it. So, I wear a lot of cheap, sparkly jewelry, which helps me to find moments of joy to counter the stress from my finances. And when I am really upset, playing the organ helps calm me down and feel OK again. Maybe it’s controlled hand flapping! Plus the sounds of music are so exquisite. All music can be this blissful, not just my preferred Baroque sacred music.

In general, moments of bliss can come at any time, for any reason, and I like to learn how to capture, retain, and use them to my advantage. Why not?

P.S. Happy Autism Acceptance Day and happy Autism Acceptance Month, and happy Autism Acceptance Year!!!! …….. Whee! This was fun!

Wednesday, April 25, 2012

Mahina and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we’re talking with 19 year old Mahina, who is smart, funny, & autistic.

Do you have a website? 

Yes! Check out mahinamk.blogspot.com; I write on my life and other cool things. I also have a music blog and tumblr. My Twitter was my first site before I branched out into blogging.

What would you like a one-sentence description of yourself to say?

Awesome, cute (according to others), smart, funny, God-fearing, loving young lady.

Do you have any autistic superpowers? What are they?

Not sure if I have any unless visualizing everything and seeing even the little things as images counts. I tend to speak in non sequiturs as well.

What are some situations that make you happy, or satisfied?

Reading, history, listening to music, eating good food, blogging, antique shopping, animals, horseback riding (love horses!), spending time with friends (yes, I finally have friends) and doing homework (sike). To be honest, I prefer being by myself most of the time.

What are some situations that make you sad, or anxious?

When people hate on or bully others, are cruel to others and animals, use others, or think of those with disabilities as inferior/not useful to society/stupid and not “normal.” I get anxious in crowded places and very frustrated when I’m overstimulated or when I can’t process everything because the situation is moving way too fast. Sometimes a certain situation will get so loud I must go out or take a break to avoid a mental or (rarely nowadays) physical meltdown. I’m better now at controlling my meltdowns and anxiety though.

Are there specific topics you find particularly compelling?

Human/animal/civil rights, music (rap head here), and history.

What are your preferred ways to be social?

If I don’t know someone well or am meeting them for the first time, I’d speak to them one on one. Once I get comfortable with someone, I’m less reserved and socially anxious and will probably embarrass myself by getting fun and hyper. I like social networks because they don’t make me anxious, let me think for a long time before answering (something I can’t really do offline), and I can be social on my own time. My social skills are way, way better than they were a few years ago so I’m getting more confident with socializing and going out.

What traits do you prize in a friend, or companion?

Loyalty, respect, and patience.

Are there parts of your life you wish were easier?

My sensory issues bother me a whole lot! I’m gradually becoming more independent but I still need quite a bit of help in a lot of areas, even simple things like applications. I just hate when people touch me randomly or suddenly and without saying something or asking first, which startles and annoys me!

What's the next big goal you have for yourself?

I’d say finding an internship or job before I graduate from college. Right now I switched from majoring in veterinary technology to accounting (but still not that good at math haha), which is an industry where many employers want experience before hiring you. So I’m trying to get experience.

What does bliss feel like to you?

Look back at what makes me happy or satisfied. :))

Aaron and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with "excellent student" and "big history geek" Aaron

What would a one-sentence description of yourself sound like? 

A history loving autistic child.

Do you have a website? 

Yes I do. My website is called Bertram’s Blog.

What would you like a one-sentence description of yourself to say? 

I am an excellent student and a big history geek.

Do you have any autistic superpowers? 

What are they? I think my ability to remember things history is a superpower. I remember history information, and I also remember certain events in my life.

What are some situations that make you happy, or satisfied? 

I feel happy or satisfied when I am playing Minecraft, when I realize that a got a high score on any of my work, when I have just read a book, and when I write.

What are some situations that make you sad, or anxious? 

I feel anxious when I am in a large group. I feel sad if I get a bad test score. I feel anxious when something is hard, and I might not understand it easily.

Are there specific topics you find particularly compelling? 

My areas of interest are History, writing, and reading. I am especially interested in the American Revolution. I have plenty of time to study what I want because I am homeschooled.

What are your preferred ways to be social? 

I like to play with a single person or a small group.

What traits do you prize in a friend, or companion? 

I prize being able to play with them. I prize the playing itself and not the social part.

Are there parts of your life you wish were easier? 

I wish that it was easier for me to read other people’s faces. I wish the social part of life was easier.

What's the next big goal you have for yourself? 

My next big goals are to finish Algebra and to complete my second book. [Aaron's mom Sarah writes: "Aaron wrote The Grand Hotel during NaNoWriMo 2011. He’s hard at work on the next installment of the series."]

What does bliss feel like to you? 

It feels happy, sometimes quiet, and without other people.

Tuesday, April 24, 2012

Carol Greenburg and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope. 


Today we're talking with rapier-witted TPGA editor Carol Greenburg, who among her many talents gets every Star Trek references we lob at her.

Do you have a website?

My company's website is www.nyspecialneedsconsulting.com

What would you like a one-sentence description of yourself to say?

Tiny, powerful and a trip and a half. (You can tell I'm autistic because I was worried my response was all wrong because both didn't include both a subject and predicate. :) )

Do you have any autistic superpowers? What are they?

Perseveration, perseveration, perseveration. I strive to use these powers toward neutral ends at very least and for good when I'm particularly full of vim.

What are some situations that make you happy, or satisfied?

Watching my autistic son grow up with all the support he needs that didn't exist when I was his age. It's amazing to see the world changing for the better in so many ways in my own lifetime and look forward to the possibilities in his.

What are some situations that make you sad, or anxious? 

Witnessing the daily, casual cruelty that passes for normal behavior in interactions between powerful and less powerful people.

Are there specific topics you find particularly compelling?

Appropriate technology, Botanical prints, Special education law, Fair trade.

What are your preferred ways to be social? 

Small, quiet gatherings that include at least some people I already know.

What traits do you prize in a friend, or companion?

Forthrightness, I'm at a disadvantage when I'm in a social situation that require me to read between the lines. Compassion, the ability to forgive, and a good sense of humor are also qualities I admire.

Are there parts of your life you wish were easier?

I wish people would believe me when I say I'm autistic.

What’s the next big goal you have for yourself?

I've just re-committed to taking better care of myself, making doctor and dentist appointments, eating right, going to sleep at a reasonable time, etc.

What does bliss feel like to you? 

My husband and I snuggling in a hammock under a palm tree overlooking a lagoon. My son elsewhere having wholesome, well supervised fun.

Julia Bascom and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with Julia Bascom, a frequent contributor to Shift Journal and the powerhouse behind the Loud Hands Project.

What is your name?

My name is Julia Bascom.

Do you have a website?

juststimming.wordpress.com

What would you like a one-sentence description of yourself to say?

I am not a word/I am not a line/I am not a girl who can ever be defined (this is echolalia, and also meaningful.)

Do you have any autistic superpowers? What are they?

I'm very distractible and forgetful, which can make unpleasant things easier.

I don't really believe in the idea of "autistic superpowers." There are things I am good at, things I am bad at, and things I have developed amazing skills in to compensate for challenges, which is cool and not something people usually realize is a part of being disabled.

Oh! I used to be very, very good at math, which I think is usually what people want to hear when they ask this question. Now my abilities there are a lot shakier, thanks to head trauma and excessive medication, but for a while, it was nice. Numbers are still really beautiful.

What are some situations that make you happy, or satisfied?

When I find the right words that make the world scale and fit correctly.

Organizing.

What are some situations that make you sad, or anxious?

People.

Unclear expectations.

People.

Are there specific topics you find particularly compelling?

Almost anything having to do with how language works.

Multiples of 7.

Music.

What are your preferred ways to be social?

Text-based conversations with one or two people at a time.

Parallel play.

Shared enjoyment of a specific activity.

What traits do you prize in a friend, or companion?

Clarity, patience, shared interests.

Are there parts of your life you wish were easier?

Of course.

What's the next big goal you have for yourself?

Getting a place of my own -- not by myself, but with roommates and the right supports. But a space that is mine.

What does bliss feel like to you?

Being able to see everything.

Monday, April 23, 2012

Lorie Johnson and Autism Acceptance Month


We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Today we're talking with Lorie Johnson, who says this five-leaf clover from her garden is "as rare a mutant as I am."

What is your name and age?

My name is Lorie Johnson, and I'm 51.

Do you have a website?

sunfell.wordpress.com

What would you like a one-sentence description of yourself to say?

World wandering Philosopher-Geek and autotelic Aspergian audiophile.

Do you have any autistic superpowers? What are they?

I have extraordinary hearing. Absolutely stunning dimensional clarity and sensitivity. I live through my ears, which is fine, since my vision is wonky. Even at my age, I can still hear things pitched for younger ears, including dog-whistles, CFL and fluorescent lights, and flyback transformers on old CRT TVs and monitors. The 'teen buzz' ringtone was like an icepick through my ears.

The downside of this is that when there is an 'off' sound, or some little weirdness, I have to hunt it down and find its source. This is good when it comes to keeping my car and other mechanical things maintained, but not so good when I need to concentrate on something and some little random noise is pulling me away. My Siamese cat knows this, and heads for the nearest plastic bag that he rattles to get me to pay attention to him.

I am also very technologically oriented. I joke that the first word I learned to read was "Sony." I loved playing with our old reel-to-reel tape decks and record players as a kid. I picked up on computers very quickly when I got my first on 20+ years ago. I rapidly became adept at using them and fixing them. Someone once called me a 'computer whisperer' because of my talents with figuring out the problem and fixing it. I've uncovered some really obscure problems that way. But it's not only computers -- I am capable of 'mind-melding' with pretty much anything technical and getting it to work.

And language is yet another 'superpower.' I was considered a snob when I was young and used advanced language and vocabulary. As an adult, it's properly appreciated as fluency. And I am as adept at paring things down to their essences as I am at using involved descriptions.

What are some situations that make you happy, or satisfied?

Getting a good job done with minimal difficulty or help makes me satisfied. When I leave the desk of a colleague, they have a working computer, and are probably laughing, too. Being praised and appreciated for my knack of zeroing in on a problem and fixing it makes me very valuable to my workplace. Having a tidy house and yard -- cleaning All The Things -- also makes me oddly happy, too. There's nothing like that feeling I get when I regard my freshly mown yard or washed car.

I love geeky t-shirts and goofy signs. I have one that says, "Instant Human: Just add coffee." I am happiest in jeans, an interesting t-shirt, and comfy shoes. I love learning new things, and new skills.
Writing great things and getting positive responses from them satisfies me. I am much clearer with the written than with the spoken word, and a couple of my essays have actually been published in textbooks. I seem to have a very clear and concise 'voice' in my writing, and keen observational abilities, as well. I think this comes from decades of trying to figure out this 'wrong planet' I've been stranded on.

Listening to really good music makes me very happy. I'm an audiophile -- the good sort -- it's all about the music to me. The playback equipment is secondary, but my gear is top-class nonetheless. I'd rather spend more money on a top-flight system that sounds good than be cheap and end up being unhappy about the sound quality. I even audition wind-chimes. There is a quality to certain sounds (and colors and scents) that is very compelling and comforting to me.

What are some situations that make you sad, or anxious?

I really dislike when there is a miscommunication or misunderstanding. It makes me feel really stupid, sometimes. I've done a lot to educate my colleagues about my particular needs -- like preferring written over spoken directions. I have a hard time listening and understanding at the same time, and tend to get anxious about getting things right. I have a hard time taking notes from a phone conversation -- it takes me a while to coordinate the listening and the writing. This can lead to problems, too. It's made me a bit phone-phobic, sad to say.

I hate 'falling out of the pattern' when I get flustered, angry, harried or frightened. It takes me a while to get my timing back when this happens. I sometimes have to find a quiet place, sit down, and take a few deep breaths to 'reset' myself.

Filth, disorder, and certain kinds of clutter make me very anxious. I can deal with dust, papers and books, and minor cat-chaos (their toys on the floor, a messed-up rug, some shed fur), but filth and disorder bother me. I take very good care of my things- from my car to my clothing, and while there might be some wear and tear, most of my things look almost new. My home looks lived-in, but also well cared for.

Are there specific topics you find particularly compelling?

I love technology and music. And science and metaphysics, as well. I can talk your ear off about nutrition and exercise, then turn around and talk your other ear off about electronic dance music and synthesizers. I'm truly a polymath, although I wish my actual math skills were a bit stronger.

What are your preferred ways to be social?

Quietly. I am not into loud sensory overload places like clubs (even though I adore club music), and absolutely hate crowds. My idea of a party is a few friends, some good food, conversation, and maybe a movie. A dozen people are about all I can handle in one setting, less is better. I've noticed that as I get older, crowds bother me more than they used to. I used to love to go to science fiction conventions, but not so much anymore.

The internet has been a godsend for me -- I can be social, and also solitary, if that makes sense. I call it being a 'netrovert.' Other people underfoot or in my 'space' just bother me in a basic way -- they don't mean to, but I have a limited amount of time that I can bear to be in anyone's company. If I go over my limit, I morph into a cranky polar bear.

What traits do you prize in a friend, or companion?

Understanding, acceptance, and intelligent humor. Appreciation of good food, wine, books and music.

Are there parts of your life you wish were easier?

I wish I could speak as well as I write. Everything I do involving casual acquaintances and strangers is rehearsed and scripted to some extent. I've internalized them to the point where they sound natural, but I still hate being at a loss for words, especially when I am really engaged, aroused, or angry. And I wish I could have picked up the nuances of people at a younger age. I still don't 'get' a lot of what nypicals find important -- like the whole couples thing. I prefer my own company, to be honest.

Being an adult female makes me realize how invisible I am as far as my Asperger's is concerned. I was able to blend in so well that I pretty much became transparent in many ways. It took me many years to truly accept and embrace my differences and eccentricities, and understand that they are not defects, but gifts in their own way. Still, I had bad things happen to me as a result of my particular cognitive differences that I hope younger women are being educated about. I've been doing a lot of self-evaluation, and re-framing some of my particular peculiarities through the filter of Asperger's. It's helped me to understand why I loathe most 'girly' things and love elegantly complicated things that most women ignore or dislike.

What's the next big goal you have for yourself?

I want to learn how to create and compose electronic dance music. My learning is stalled, mostly because I am facing both a huge learning curve, and that crust of caution that middle age tends to build on one's ability to gleefully jump into new things. I know I'll screw up, but I'm hesitant to even try, which really riles me. I love electronic music, and have a headful of things that I want to share, but getting it from skull to speakers is proving to be difficult. I really need a mentor. Or some cheerful nagging. I'd like to learn an instrument too -- particularly piano or synth.

What does bliss feel like to you?

Listening to a piece of music with excellent interplay of rhythm, bass, and hook elements.

Emma and Autism Acceptance Month

We're featuring "Slice of Life" conversations with Autistics of all ages -- kids through adults -- throughout April's Autism Acceptance Month

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.

We are the people in each other's neighborhoods, and the more we know about each other -- the more visible autistic people and children are -- the more common autism acceptance will be. That is our hope.


Emma's mom Ariane Zurcher writes, "Emma was unable to answer most of these questions. Of the few she did answer verbally or by typing, I have put in quotation marks. For the others I found a combination of photographs and audio to accompany the questions. I answered a couple of the questions with my own thoughts, which are not meant to "speak" for Emma. Combined I hope this collage gives a small sample of Emma."

What is your name?

“My name is Emma.”

How old are you?

“I am ten.”

Do you have a website?

Ariane writes: Intended to replace the mass email updates Ariane felt obliged to periodically send to her family and friends, she began Emma’s Hope Book: www.emmashopebook.com. Since then it has grown and is read by people from all over the world. Ariane also blogs for the Huffington Post on autism and Emma: www.huffingtonpost.com/ariane-zurcher.

What would you like a one-sentence description of yourself to say?

Ariane writes: These photos are all of Emma and span from age one to ten years old.


Do you have any autistic superpowers? What are they?

Ariane writes: Not “super powers,” per se, but talent and a love of performing. This is Emma singing Que Sera Sera with our friend Alycea Ench:


What are some situations that make you happy?

Ariane writes: Emma typed the answer to this question. She wrote, 

“The things that make me happy are the same.”

When I asked her to tell me more, she typed, 

“Emma loves to dance. Emma loves music.”

What are some situations that make you sad or anxious?


Ariane writes: The note that went with this self-portrait was:

“Emma is sad. They want to turn it on. Mommy, I need help turning on Hubble Imax theatre.”

Are there specific topics you find particularly compelling?

Ariane writes: This is Emma’s work in progress – her beloved string.


What are your preferred ways to be social?

Ariane writes: Emma loves a party. She loves being among friends and while she isn't able to engage with others easily, she will do a "performance" given the opportunity to do so. A performance involves singing and dancing to her favorite songs.

What traits do you prize in a friend or companion?

Are there parts of your life you wish were easier?

Ariane writes: I will interject here, because Emma couldn’t answer these questions. I do not speak for Emma, so please know that these are my perceptions and not hers, but I think Emma would wish she didn’t feel such extreme pain when the air pressure changed. There are certain sounds that she finds almost impossible to tolerate, such as when the cuisinart is turned on. She typed, “I don’t like on, I like pulse, it doesn’t hurt.” She has had GI issues for the entire ten years of her life, which I think she would prefer she didn’t have.


And again, I’m guessing, but I think she would like to be able to articulate her feelings, thoughts and opinions better and more easily.

What’s the next big goal you have for yourself?

Ariane writes: Emma told me last week that -- "Go sleep over at Susan and cousin Peter's house." Since this is not something I can easily orchestrate, this falls under the "next big goal" heading. In addition my big goal for Emma is to continue helping her with reading comprehension and to work on her writing and typing, I have no idea if these are goals Emma shares, however. A year ago Emma could not form all the letters to the alphabet, so she is doing magnificently well.

What does bliss feel like to you?

Ariane writes: This is a series of photographs of Emma dancing to Maroon 5’s song Moves Like Jagger featuring Christina Aguilera. The turquoise thing in Emma’s hand is her string. It is a work in progress. This morning she covered it in red duct tape. See photographs above. 


“I’ve got the moves like Jagger…” and she did.


This is bliss. In its purest form.


Bliss.