Monday, April 14, 2014

On Labels, Awareness, and Community: Guest Article




Image: A lighthouse on the right-hand side, with a beam made up of rainbow colors. On the left a small boat with a blue puzzle piece that has been crossed out with a red slash. The boat is hitting the rocks

On Labels, Awareness & Community
Cinder McDonald
March 26, 2014

I am Aspie.  I am also trans, genderqueer leaning toward male, gay, queer, physically disabled.  I am the mother of an Aspie young woman who stands tall and proud, has a busy social life and makes beautiful things.  I am the older brother of a nonverbal autistic man who sees shapes in clouds, finds endless wonder in car keys and tires, who signs “friend” whenever he sees Bert and Ernie on Sesame Street.  I am poly, with two husbands under one roof.  Poly means two incomes in addition to my puny disability check and it means I have enough help on-hand that I don’t have to have strangers coming into my house to provide personal care.   Sometimes I think I could drown under the weight of all these labels that seem to be stuck to me like stamps.   I should start introducing myself that way: “Hi, my name is Cinder, I collect labels and diagnoses”….

Tell me, what does it mean to be “aware” of autism?   I’ve never been quite clear on what all this “awareness” is supposed to do.   Lots of people are already very aware of me, since I am not the least bit shy with my opinions.  I’ve been told my secret superpower is pissing off people, making them look at things they’d rather not pay attention to.  Nobody can work up a good righteous outrage like I can.  I must admit such candor does not get me invited to too many parties and sometimes I feel sad about it.  Most of the time, I’m happy to be alone, to write, to express myself.

For all my intent to stay home and be an introvert, I find I am very good at starting groups and bringing people together.  I open my mouth, wonderful ideas pour forth, and the next thing I know, I’m having to act on those ideas.   Despite my great creativity and flair, I am terrible at fundraising.  Fortunately for me, I have two husbands who kindly indulge my group-starting, community-organizing addiction and don’t seem to mind too much when I spend household money building a float or buying lunch for young adult Aspies who rarely get to dine out.

Most Aspies in my generation had to grow up without knowing they were autistic.   Others were subjected to harsh therapies that harmed more than they helped.  We do our best, but our past experiences seem to hamper us more than we would like.   The Aspies of my daughter’s generation are different from us, they’ve grown up with knowledge of their identity.  They come into adulthood knowing about accommodations, from us, they get to see what autistic maturity looks like.  It’s less stressful.  I think it’s easier for them to embrace the power of community because of the wealth of tools they have.  Texting, Skype, Twitter and Facebook comes so easily to them.   When young Aspie adults form their community of choice, they do what other groups of young adults do.  They figure out housing.  They network to find jobs.  They go to school together.  They build long-term relationships.   Aspies tend to get along with other Aspies because of shared language, common interests and brain maturity relative to age.   We need to recognize that Aspie brains mature more slowly than neurotypical brains.   There are far too many Aspies who pushed hard in their early twenties, only to find themselves burned out and chronically ill in their forties.  

If you want really want to do something for people with autism, whether this month or any month, look for the autistic groups in your community that are run by people on the Spectrum.  They may not be the best advertised and I bet they are run on a shoestring, but they are there if you look hard enough.  Give of your time and money if you can.  I’m sure many of us could use help with transportation or organizing events.  Then next April, when you’ll see the awareness ads pop up, you can shrug your shoulders and say, “Awareness?  Ha.   I know folks on the Spectrum now.  Good people.  Good friends.”


A larger image of the lighthouse and Autism puzzle ship on the rocks.

Friday, April 11, 2014

On Labels, Awareness & Community




Image: A lighthouse on the right-hand side, with a beam made up of rainbow colors. On the left a small boat with a blue puzzle piece that has been crossed out with a red slash. The boat is hitting the rocks. Perhaps a reference to the famous "Autism Speaks: Your slow boat of fail listeth, Sire."

On Labels, Awareness & Community
Cinder McDonald
March 26, 2014

I am Aspie.  I am also trans, genderqueer leaning toward male, gay, queer, physically disabled.  I am the mother of an Aspie young woman who stands tall and proud, has a busy social life and makes beautiful things.  I am the older brother of a nonverbal autistic man who sees shapes in clouds, finds endless wonder in car keys and tires, who signs “friend” whenever he sees Bert and Ernie on Sesame Street.  I am poly, with two husbands under one roof.  Poly means two incomes in addition to my puny disability check and it means I have enough help on-hand that I don’t have to have strangers coming into my house to provide personal care.   Sometimes I think I could drown under the weight of all these labels that seem to be stuck to me like stamps.   I should start introducing myself that way: “Hi, my name is Cinder, I collect labels and diagnoses”….

Tell me, what does it mean to be “aware” of autism?   I’ve never been quite clear on what all this “awareness” is supposed to do.   Lots of people are already very aware of me, since I am not the least bit shy with my opinions.  I’ve been told my secret superpower is pissing off people, making them look at things they’d rather not pay attention to.  Nobody can work up a good righteous outrage like I can.  I must admit such candor does not get me invited to too many parties and sometimes I feel sad about it.  Most of the time, I’m happy to be alone, to write, to express myself.

For all my intent to stay home and be an introvert, I find I am very good at starting groups and bringing people together.  I open my mouth, wonderful ideas pour forth, and the next thing I know, I’m having to act on those ideas.   Despite my great creativity and flair, I am terrible at fundraising.  Fortunately for me, I have two husbands who kindly indulge my group-starting, community-organizing addiction and don’t seem to mind too much when I spend household money building a float or buying lunch for young adult Aspies who rarely get to dine out.

Most Aspies in my generation had to grow up without knowing they were autistic.   Others were subjected to harsh therapies that harmed more than they helped.  We do our best, but our past experiences seem to hamper us more than we would like.   The Aspies of my daughter’s generation are different from us, they’ve grown up with knowledge of their identity.  They come into adulthood knowing about accommodations, from us, they get to see what autistic maturity looks like.  It’s less stressful.  I think it’s easier for them to embrace the power of community because of the wealth of tools they have.  Texting, Skype, Twitter and Facebook comes so easily to them.   When young Aspie adults form their community of choice, they do what other groups of young adults do.  They figure out housing.  They network to find jobs.  They go to school together.  They build long-term relationships.   Aspies tend to get along with other Aspies because of shared language, common interests and brain maturity relative to age.   We need to recognize that Aspie brains mature more slowly than neurotypical brains.   There are far too many Aspies who pushed hard in their early twenties, only to find themselves burned out and chronically ill in their forties.  

If you want really want to do something for people with autism, whether this month or any month, look for the autistic groups in your community that are run by people on the Spectrum.  They may not be the best advertised and I bet they are run on a shoestring, but they are there if you look hard enough.  Give of your time and money if you can.  I’m sure many of us could use help with transportation or organizing events.  Then next April, when you’ll see the awareness ads pop up, you can shrug your shoulders and say, “Awareness?  Ha.   I know folks on the Spectrum now.  Good people.  Good friends.”


A larger image of the lighthouse and Autism puzzle ship on the rocks.

Why Autism Acceptance? Autism Society of Northern Virginia

Two great articles are featured at the link below. One is
a message from ASNV Board Member & Autistic Self-Advocate Samantha Bodwell. Samantha was a key person in getting ASNV to embrace the idea of acceptance rather than the usual cure-oriented rhetoric in April.
 
The other is a message from AutismAcceptance.org, which is an initiative of the Autism Society of Northern Virginia.


http://autismacceptance.org/page/why-autism-acceptance

Friday, April 4, 2014

Interview with Thomas Hassell- Autism Acceptance



I am interviewing Thomas, from Pennsylvania.


My name is Thomas Hassell my age is 52 and I live in downtown Mechanicsburg, Pa. I am originally from Bradford county in northern Pa a town called Towanda, I am a graduate of College Misericordia with a B.S. in business Admin. I have lived in Baltimore, Md and Carlisle Pa for periods of time I have one brother and three sisters and several nieces and nephews. I am a volunteer at the National Civil War Museum in Harrisburg and a volunteer at the Mechanicsburg Museum where I live.

Thomas, what is your life like as an Autistic person?

I guess what I can say here is that being an autistic has its good and bad points for the good points I am learning alot about myself I am a member of an adult autistic support group which I really enjoy and i am also a board member of our local Autism society which gives me a chance to hear of our autistic community problems and try to help. I guess some of the bad points are of the sometimes loneliness and sometimes feeling of still being an outsider especially at family functions.

What is the most difficult about being autistic?

I kind of answered that one above but I will repeat that it can be a lonely time being I live alone and also sometimes feel I am still an outsider at family functions.  I have never dated and don't have a girlfriend which sometimes I wish I had someone special in my life.


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

The best thing about being autistic is getting together with our support group for our group activities which we do a couple of times a month

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

To answer the first question I guess the only thing I can say is it really has not affected me personally other than I know a lot of my friends know that I am autistic and have accepted it because I too have written about my life as an autistic on facebook. I think Autism Acceptance day/Month means that I hope more people become aware of the autism community at large and become more aware and not look down on us


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

The more people in  the world become aware of Autism the less likely they to be afraid of us and get to know those on the spectrum because all of us on the spectrum just want to have friends because we do have a very hard time making friends


Tuesday, April 1, 2014

Interview with Erin Z.- Autism Acceptance



Interview with Erin Z., who is a prolific writer and writes about difficult topics in a compelling way.

My name is Erin.  I am 38 years old and was officially diagnosed with Aspergers two years ago under the DSM-IV criteria.  I am a single mom of two children who are both on the Autism Spectrum.   I am also a teacher and have a degree in Earth Science Education.  You might know me as Geeky Science Mom on Tumblr or The Aspie Teacher on Facebook.  

Erin, What is your life like as an Autistic person? 

Everyone on the Autism Spectrum is different. As the saying goes, “If you have met one autistic person, you have met one autistic person.” In my case, I am considered functional, but highly impacted.  I have sensory processing issues with auditory, olfactory, tactical, and taste. I have a form a synesthesia. I sense colors with different emotional states and with people. I guess you can say that I sense auras. I will also taste or smell colors.  It wasn’t until very recently that I discovered what synesthesia is.  I thought everyone experienced colors the way I did so I never said anything about it growing up.

I often say I have had 38 years of experience on this planet instead of stating my age. There is a reason for that. I am developmentally delayed. I see the world through the eyes of a much younger person, but I have the maturity of a person who has travelled around the Sun 38 times and have had all the life experiences that comes with that travelling.  

I also have problems with social skills. I can’t always find the words when I need to talk to people (selective mutism). I need to script out conversations beforehand.  I can’t always determine what emotion I am feeling (Alexithymia), especially when stressed and overloaded. When this happens I have to look online to find the word that matches what I am feeling. Then I can figure out what type of calm down activity I need to do to help me feel better. 

I still have meltdowns as an adult, but I can recognize them now and can act accordingly. Stimming helps me calm down and I stim when I am excited or stressed.  I feel so much better now, both physically and mentally, since I allow myself to stim. I am not trying to hide myself anymore and I feel better for it. I can’t pass for “normal” anymore, but it is not a big deal to me. I would rather be myself. I also want my children to feel that they can be themselves. I guess you can say I am trying to lead by example.

What is the most difficult about being Autistic?

The most difficult things for me as an Autistic person are the comorbid conditions that I have.  I also was diagnosed with Generalized Anxiety Disorder (GAD) at the same time I was diagnosed with Aspergers.  Anxiety already goes hand in hand with ASD, but GAD amplifies that anxiety.  My worries are very real, like financial concerns, the welfare of my children, and balancing my multiple jobs, but GAD makes the anxiety surrounding these issues that much worse.  My social anxieties are also amplified.  Since I was not diagnosed until I was an adult, I was never given help with social skills.  I have had to learn on my own by observing and mimicking those around me and I don’t always get it right.  I often am concerned about social faux pas since I have a history of making them.
I was diagnosed with PTSD ten years ago.  The primary reason was a medical trauma, but I experienced several successive traumatic events before the surgery and after the surgery.  It was during this time that I experienced Autistic Burnout.  Unfortunately, I had no idea I was Autistic at the time.  I received the wrong treatment, which greatly prolonged my recovery time.  It was also during this time that I learned I cannot tolerate anti-depressants, anti-anxiety medications, or any sleep aids for that matter.  I have paradoxical effects from these types of medications. Narcotics cause severe muscle spams in my chest which inhibits my ability to breathe properly.  Narcotics also don’t make me sleepy or do anything for the pain.  A major surgery is not a fun time to learn that you can’t tolerate narcotics.    

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

Autism is interwoven into everything I am.  It is also interwoven into both my children. It is what makes us who we are.  I am very loyal and honest.  I can hyper focus and do tasks that non autistics might find daunting and/or mundane. I love to do research and I can disseminate information quickly in a user friendly format.  Due to the differences in my perception of situations, I can see viable solutions where others may not.

Being developmentally delayed also has some perks.  I get excited about seeing a rainbow and seeing the morning sunlight glisten off the dew that has collected on a spider’s web.  I love watching the clouds and am still amazed when you can see sun beams breaking through in the distance.  Even though I understand the science behind these phenomenons, I still see the beauty and magic in them. I feel I can still see the magic in the world despite what I have been through during my time on this planet.  

With my synesthesia, I can experience the world on multiple sensory layers.  This can overload me, but it also widens my perception of things.  My son also has synesthesia and we sometimes end up communicating in colors rather than emotion words when it comes to expressing our emotional states.  Colors have deep meaning to us.  See “My Super Powers – Brain Overload - Part 1” for more information - http://geekysciencemom.tumblr.com/post/40075122900/my-super-powers-brain-overload-part-1


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

For me, Autism Acceptance is purely that, acceptance. It is not just acceptance in the people around you, but acceptance of yourself as well. In the two years since I was diagnosed, I have found myself, my true self, the one I had hidden away for so long. I feel so much freer now and I am healthier for it.

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

Seeing people as people with all their strengths and weakness and accepting them no matter what their neurology happens to be.

Do you have children or other family members who are Autistic? 

My son has told me that he likes having Aspergers, because he believes it makes you not want to hurt people. He truly believes this. He can’t stand the thought of hurting anyone or anything.  My son has also told me that he really has no idea how to make a rude comment to someone.  My son is eleven years old and he was diagnosed under the DSM-IV criteria when he was seven years old.  My daughter, who is thirteen and has Autism Level 2 (under the DSM-V criteria) and several other comorbid conditions, is such a caring and creative person and she likes who she is despite her struggles.  Neither of my children wants to be “cured” nor do I.  (My kids have given me permission to write this.) 

Monday, March 31, 2014

Interview with Alyssa- Autism Acceptance

Interview with Alyssa:

So my name is Alyssa; I'm a 21 year old college student with ALL the blogs. Not even joking, ALL of them. Yes, That Too is mine personally, but I'm also on Autistics Speaking Day, F Yeah Stimming, Autism Positivity, We Are Like Your Child, Autism Experts, and I forget what all else.

What is your life like as an Autistic person?

I have amazing pattern recognition, and I don't need to edit any of my papers because I'm hyperlexic/hypergraphic, but I wouldn't be able to edit if I needed to because what is executive functioning? (I make my grammar be actually correct for papers. For a blog, it's enough that readers know what I'm saying.) I think the best I can say is that I have a lot of challenges, but I generally have solutions if I'm allowed to use them.

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

Either sensory issues (pain and misfortune!) or executive functioning (what is it?) has got to be my biggest issue. I sometimes have trouble in social situations, but it's not just me making that happen. Other people thinking they can read autistic body language when they can't is just as much a part of it as my not being able to read theirs, maybe more- at least I know I can't read their body language!
What is the most joyful, fun, exciting thing about being Autistic?
I get to STIM! That or my Autistic Obsessions being like a stim for my brain.

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

I showed up in the online Autistic community for the first time in March 2012. Autism Acceptance Day/Month, with the Autism Positivity flash blog (I helped run that in 2013, along the lines of Alyssa does all the flash blogs now) and other positive things helped me have the energy to do the angrier/more demanding side of activism. They help me remember to build a positive community while taking down the negative things. We need both of those parts, after all.

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

Acceptance would do a lot of things, really. When we get sick, since we're accepted and our lives are thought of as worth living, there'd be more willingness to do life-saving stuff. Autistic people would actually get educations that suit us, none of this "those people shouldn't be going to college" like I ran into with my study abroad (don't worry too much, I still got in and it's going fine. The USA people have done a really good job protecting me from that mess.) Accepting people as we are also leaves us with a lot more energy to actually do the things we care about.

Do you have children or other family members who are Autistic? If you would like to say something about them, please do.

I don't have any kids at all yet- I'm a 21 year old college student. But I figure I will have Autistic children someday, either by birth or adoption. I've got some autistic family members, but I can't say much about most of them because privacy. One of my grandfathers figured out that he is after I told him I was, and the (deceased) aunt I was named for was almost certainly autistic. She's the one who memorized the Sears Catalog.

Interview with Yvona Fast- Autism Acceptance

This interview is with Yvona Fast, who is a writer and author of three books.

I am 59. I have a Master’s in library science and am a writer and author of 3 books: 
 
Garden Gourmet: Fresh & Fabulous Meals from your Garden, CSA or Farmers' Market Bloated Toe Publishing, 2013.
 
Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability: Stories and Strategies, Jessica Kingsley Publishers, 2004.
 
My 9 Lives: A Holocaust Memoir, 2011 (co-author with Dana Fast)
 
I also write a weekly food column for the Adirondack Daily Enterprise and a blog at www.wordsaremyworld.com
 
What is your life like as an Autistic person? 
 
This is very general and broad so I don’t know where to start.

What is the most difficult about being Autistic, for you?
 
People often misunderstand me. And I often misunderstand them because I don’t read the body language.

What is the most joyful, fun, exciting thing about being Autistic? 
 
Not sure

How has the Autism Acceptance Day/Month effort over the past four years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now? 
 
All people should be accepted for who they are regardless of neurological or other differences.

What is one thing about acceptance that would make a difference in the world?
 
If people stop judging others until they’ve walked in their shoes. For example, people think I’m stuck up or a snob when I simply don’t recognize them (I have some face blindness).

Do you have children or other family members who are Autistic? If you would like to say something about them, please do. 
 
Don’t have children