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.) 

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