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Executive Functioning in ASD

Dr Arnold and Karla Fisher talking about Autism and Adocacy. Are you really empowering your clients for success in the world?

ASD Adult Depression

ASD-adult-depression

Daily I talk with ASD adults who are severely depressed due to loneliness. Today I created this slide to share with an adult to remind them to CATCH MISCOMMUNICATION. We make reminders on their phone multiple times per day to train the brain to CATCH MISCOMMUNICATION.

1st Meeting

These slides are an overview of our Consent Packet.

1st session from NLClinic

Karla & Cynthia – traveling!

Here is a picture from our recent travels to the Autism Research Institute conference.

We were honored to meet with Dr. Valerie Paradiz and discuss working together on autism self-advocacy projects. She also invited us to attend the adult autism self advocacy track of the conference.

The conference was near Disneyland, so we had fun taking some fun pictures as well!

Acceptance YES!

Acceptance = YES

My hope is that this information fills a gap in the current Austim curriculm and helps people to accept their diagnosis as empowered/whole people.

Because advocacy begins with acceptance.

As an ASD Self Advocate and mentor, I have created the set of slides that I would have wanted to hear when I was diagnosed just a few years ago.

Nearly 2 years ago Karla and Cynthia first joined forces with a shared vision of making Neurodiverse friendly ASD curriculum that could be understood by both NT and ASD cultures. This work is exceedingly hard on both of us as the Language differences are very large. Our fist goal was to create the “right” content for one of the biggest issues we see today. Namely there are too many young people landing in bad places because of misconceptions and myths about Autism. These wonderful individudals feel doomed by a diagnosis rather than empowered.

 

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Synesthesia or Sensory Integration Disorder?

Synesthesia or Sensory Integration Disorder?

Can you hear in color? Do you hear numbers and see colors? Do you see an aura around people?

Many people with sensory differences are actually experiencing synesthesia.

You can read more about what is is on this Wiki page.

Your sensory system is located in your brain. Sometimes ‘wires are crossed’ and two senses can be experienced simultaneously. If you have this, it is ‘hard wired’ and is expected to change very little over time.

There are pros and cons to this.

Pro: you may see people and ‘read’ them by your sensory experience (aura); for some it provides them with exceptional memory

Con: sensory overload/shutdown, painful sensory experiences

Synesthesia

 

I know many people with synesthesia, because it is quite common in the ASD community!

 

 

Not Overcoming Autism

Read my bio here:

“But my four-year-old Johnny isn’t as high functioning as you.” I stare blankly at the wall behind the well-meaning parent and think back to when I was four. I then picture many more four-year-old kids I have met. I conclude that not one of those four-year-olds has had a successful career, owned properties, driven a car, raised a family or had any of the other achievements that mark me as “high functioning” to people looking at me today. In fact, not one had the knowledge, the resources or the experiences of any 48-year-old woman. I don’t know how to respond to this person who compares a four-year-old child to a full-grown adult in terms of ASD functioning, so I say nothing.

I frequently read articles about famous autistic people and how they overcame autism. I read countless stories of kids and young adults with the same “overcame autism” words in the title. It is always inspirational on one level, but it is also very disturbing to read about the struggles of these people and to see them considered no longer autistic once they have accomplished something of value to society. It is disquieting to read that the writer viewed autism as the thing to overcome in these peoples’ lives.

It occurs to me that these parents and caregivers who approach me with these words about “functioning levels” are missing a big piece of my life story. As an emotionally mature person, I tend to not focus on “negatives” or “struggles” in my life. But it appears that without knowing about them, many people will cheapen my lifetime of work with this subjective term “high functioning” to match their perception of an ASD person who could actually achieve the things I have described in my published biography.

So here, raw and uncut, is…

My Bio: The Other Side

I have a medical history of three to seven visits per year to the emergency room for panic attacks, high blood pressure, infections and other stress-related illnesses. I have been formally diagnosed with physical exhaustion more than three times in the past 10 years and did not bother seeking a diagnosis several other times. I have been sexually molested. I have been in jail multiple times due to meltdowns and being unable to express myself or communicate.

I did not graduate college. I lost over $50,000 in loans I made that were never paid back. I foreclosed on a property because I did not want to change the mailing address for payments when they sold my mortgage. I have never been able to figure out the relationship thing with men or women. I missed much of my high school education. I was a single parent struggling to stay off welfare.

I have been bullied and excluded. I was in an abusive relationship with a drug addict. I was diagnosed as anorexic. I have been misunderstood more times than I can count. I have been fired from more jobs than I can count. I have been sexually harassed and discriminated against more times than I can count. I have been shuffled around in jobs and not promoted.

I started using hardcore drugs at age 12. I grew up in a street gang environment. I have a scar on my upper lip from gang-related activity. I have had many addictions. I have needed help with self-care. I had to hire help for simple money management. I hire help for most administrative tasks. I have hired teams of people to do many things most people find trivial—for example, I had to pay a nutritionist to help me learn to eat due to my broken hunger cues. I suffered numerous and severe injuries from sensory overload and subsequent shutdowns during athletic events. I have been refused services by doctors and other professionals in more scenarios than I can possibly list. Many times, I had to choose between buying food and paying bills.

I will stop here as that covers the gist. Amanda Baggs, an autism rights activist I met on Wrong Planet, was the first person to tell me that I am more severely affected by autism than I had realized (and more than many others she has met). Since then, several professional assessments have placed me in the more severely affected category as well. By all of these measured standards, I am anything but “high functioning.” Knowing this, reading of my struggles, and seeing my achievements, some may believe that I have overcome autism. But I do not see this at all.

Autism is not an “enemy” that I must overcome. Autism is my neurology. It is very much a part of who I am today as a person, both the good and the bad. It is pervasive and affects the total “me” now as much as it did when I was smaller. I did not overcome autism to be who I am today. Instead I learned to accept, to adjust, to be more self-aware, to adapt, to advocate and to work really, really hard.

In this sense I am much like anyone else. But make no mistake that my story does have a difference, and it should be inspirational to other people who have differences. I did (and still regularly do) overcome the real enemies to my personal success as an integral, contributing member of society. I have overcome ignorance, prejudice, discrimination, hate and misunderstandings. Sadly, I face these things still. My hope is that through my persistent presence and work that other “different” people will have less to overcome.

Acknowledgement: A short time after my diagnosis (and long before I was able to accept it) I had the privilege of hearing a young man by the name of Ari Ne’eman speak to our local ASAN chapter. I was not able to wrap my head around a lot of the concepts that I saw coming from him or his supporters. Things like disability rights issues and people/political issues in general were far too abstract for me to spend time thinking about. I wanted to help but I could not step up in a meaningful (to me) way. I had a lot of questions for him and he gave me advice that I took to heart.  He told me to take my time and do what I am capable to of doing today. He said that not everyone can step into the role of self-advocate at the same levels and that is okay.  He said that doing something was better than nothing. He also advised that I start studying disability rights issues instead of focusing entirely on autistic issues. Nearly 2 years later, I feel as though I have a better understanding and can take a stand next to my self-advocate activist peers and be aligned to their cause. I still have a long way to go and a lot to learn. My reach is local for now but I am focusing on the world as I spin more clearly into the current autistic civil rights movement. I want to thank Ari now for taking his personal time on that night to so patiently and clearly answer all of my questions and also to all my autistic peers who work so diligently to make sure that our people are given the same opportunities as all people.  

 

Video/Lecture: Anthropology of ASD talk

Anthropology of ASD

World Peace Suit of Armor

Your homework this week is to own each and every death… That’s all the people that die, and while you are at it, take on the insects too!

The Psychologist seemed a little frustrated with me when he offered this assignment.  I was in grief therapy trying to process my Father’s recent death.  This was my very first time ever in therapy and I was the very first ASD person that my grief therapist had encountered in practice.  On this session we had ventured into my Desert Storm experience and I was unsettled. The Doctor tried to tell me how some things are too big to own. He explained how he personally can only manage to care for himself, his family and a small group of outside people. He insisted that people are designed to only be able to “own” so much. I was shocked to hear him say this.  I argued that his logic was wrong. If his logic were true then the Nobel Peace Prize would not exist. I then got a bit indignant and declared that my company (and furthermore I) do work that changes the world, not just our own little area. Finally I told him I would prefer not to adopt his self-limiting belief system.

It was then that I got the assignment to personally own all the deaths of every person this week and every insect too while I was at it. He softened a bit after giving the assignment and then continued in almost a whisper. “A normal person would end up standing in the corner laughing at the absurdity of this request. But you… You will quite possibly come back here with the World Peace Suite of Armor.” I realize that it is quite possible that he was being sarcastic when he assigned this task to me but that is his “bad” because he should have known that I do not DO sarcasm.

We ended the session shortly after this. He did some “closure” type of statements including complimenting me on my overall attitude and spirit. I think that it is rare for him to cross one so stubborn and so committed, not to mention one who will challenge him so freely. When I said my goodbyes and left the room, I heard him comment that the session was an invigorating one. He confided in my last session that he lives for sessions like mine, but I think this is “self talk” he does to get through them. J

And so began my homework assignment for this week. I called it “Operation World Peace Suit of Armor”. At first, I wasn’t sure how to begin, and considered not thinking about it at all and blowing it off as sarcasm and not a real assignment.  But I know from my life experience that if you really want to learn about a problem, you need to own the problem. So with that I decided that I would set aside 30 minutes total time of my week and “own” the deaths of all the people and all the insects that I could.

I began this assignment by looking at the obituaries as a starting point and categorizing all the deaths by type, age and gender. I took notes about the type of death and determined that I could either do something about it or I could not. An age related death was one I could not and would not care about. A traffic related death I could do things about. A murder I could do something about…. Etc. As I was doing all of this it occurred to me that this could be very time consuming with very little return on investment.  This led me to instead focus on the “insect” population.  I had 10 min left by this time so I set out to see what 10 minutes of my time meant to the insect population and to validate my belief system that I alone CAN make a difference in this world, that is WAY bigger than me and my small circle.   So I composed a note that solicited help from all of my facebook and blogger friends and I asked them to save and tally the insects.  People from all over the world started to respond and within a week we had some amazing findings and results.

Results:
Final tally at one week was 3569.5 (the .5 is for the ant that one friend tried to save from the cat but the cat was too fast.)
Given that my action, all alone, affected thousands of insects’ lives by expending just 10 minutes of my time, it can easily be concluded that if I were to focus my energies on this problem a bit more, that those numbers could easily grow into the millions.

This is actually an amazingly large number when you consider the odds against me from my view, if I were to take the Doctor’s perspective and advice. From my view it was winter and there were no bugs or few bugs. If I had only myself and a small circle of local friends to ask, this task would have been impossible.

But my lesson taught me more than knowing that I can affect the insects of the world. Because more important than the Math part of this experiment was the unexpected (by me) human side. This is the part that really touched me and helped me heal. This is the part that solves the problem. People from all over the world answered my request. Many of these people have never met me in real life and only know me from online. If you think about this, it is really special that they all so willingly participated given that the request was very strange and very against normal human behavior.

The collective energies of my friends across the world to my “Save the Insect” threads created synergy and laughter. The stories some of them came up with were hilarious.  A giant plastic ant found its way onto my kitchen counter one day when I was at work (left by my neighbors who were also participating.)  Laughter, compassion and empathy were flowing from everyone involved and the project became increasingly fun.  And here is where the results became bigger than the 3569.5 and bigger than me.  It became “we”…

I believe that the more we raise these energies, the better this earth becomes, so in this way, my silly little homework assignment had a positive effect on the greater human good of this world. I could feel the warmth from it for days… And this is just for today… It doesn’t speak to how these actions (all triggered by my simple 10 min request) could impact tomorrow. Think about my friends who have children who were taught compassion for a lowly creature and empathy for a person they and their parents quite possibly never met. Do those children grow up with higher values through these lessons and do they raise children with the same values? If we can raise the level of empathy and compassion over the next 10 generations from where it is today, is it quite possible that indeed we could come to “world peace?”

Okay, so perhaps that is a bit of an exaggeration, but it fits nicely with my belief system that every little action I take… every decision I make every single day has an impact outside of me. It isn’t just the actions I take but the actions that I don’t take. So when I was finished telling my story to the Doctor the next week, his silence and contemplation of my words spoke volumes to me.  He had clearly not expected that I do anything quite so remarkable or bizarre.  I do not remember what his words were when they finally did come, but on my way out that day I remember him thanking me profoundly for the story that he would cherish for the rest of his days.

And that (my friends) is why we need different perspectives and why the world needs autistic people too.