My First Panel Discussion: On Autism, Naturally

In May I was selected to appear on a panel of what turned out to be all females discussing our experiences growing up and coping with autism. This is a new venture for me, and a first foray into being an autism activist and spreading awareness. I was much dismayed, however, to see myself on film and in photos – it is difficult to reconcile my obviously autistic look with my own conception of myself, which is NOT so geeky looking.

I find myself extremely stimmy and simply can not sit still. Flapping my squishy, uttering grimacing, swinging my feet. I kick the table loudly just as another panelist is describing her reaction to loud sounds.  A flutter of twitters rises from the audience. Oops…

All in all, it goes well, and several people approach me afterwards to tell me how helpful my explanations are.

In typical autistic obsessive fashion, I  have prepared a document to bring and refer to; the questions and answers are here:

Autism Panel Questions

 

  • Diagnosed age 2, again in teens, and last at 21 at UCSF by Dr. Bryna Siegal
  • TREATMENTS and MEDICATIONS
  • Was with Regional Center in thirties, they dropped me because of my aggression, especially toward police, and have not been reinstated.
  • Have most difficulty securing and maintaining appropriate housing as I am not funded by any agency.
  • Have been on disability since becoming emancipated minor at age 16.
  • Was heavily medicated off and on from age 15 to 30’s on a wide array of psychotropics. On none presently as they either had no effect or caused negative physical and emotional side effects. The antipsychotics were especially harmful – they induce anaphylaxis which suggests my brain and nervous system are extremely sensitive.
  • WHAT HELPS
  • Introduction to Buddhism in form of mala and om mane peme hum came in the “quiet room” (restraints) of hospital by kind staff member.
  • Have sinse been extensively trained at Tassajara and others monasteries, though autistic behavior prevents me from returning to monastic life.
  • Do not meditate regularly alone. Have various local sanghas I attend regularly instead.
  • Can use Buddhist meditative techniques to calm more quickly, though. I.e., focus on breath during decomp.
  • Did not begin practice until I decided to change when repercussions of my behavior became too dire and painful in my forties
  • With no relief from medications, I finally turned to Buddhist practice and attribute it to my major improvement in attitude, happiness, acceptance and compassion, of which I had none.
  • Buddhist study convinced me of the need to change my attitude of hatred and anger toward the world and from there my desire to grow provided the impetus to begin working on my behavior issues, most notably the aggression, which landed me in trouble often.
  • Then, last July, Autistry Studios introduced me to a regimen of “self care”, which has really accelerated my progress:
  • Physical exertion and a “sensory diet” crucial to bodily and emotional regulation is a must.
  • Food. Non GM, mostly organic, low processed food. High fat, low simple carb best. Have intestinal problems, so high fiber. D3 supplement. No soy, lactose intolerant to liquid dairy. Gag easily, dislike feeling full, so frequent small feedings. Love sugar, replaced with stevia. Some caffeine in the form of morning tea.Take satisfaction in growing and preparing own food. Excellent cook- cannot tolerate bustle and noise of restaurant work.
  • Carry a stim toy, my squishy, and it really helps. I have traded looking weird for public decomps and trouble with authorities.
  • Have lots of squishies. Great ice breaker!
  • Taking many short breaks, with timer, if necessary to prevent overload.
  • Wear an emergency dogtag and have created code on phone to assist in case of emergency, helps me be less anxious to attempt outings.
  • Daily routine and schedule plus:
  • 9 to 10 hr sleep. Regression is swift and severe with inadequate sleep.
  • At least half the day spent in solitude to recover from being with people or out and about.
  • Managable chunks of public time, usually no more than 4 hrs at a time.
  • I get cranky and impulsive if around people any more than that. Loner by choice.
  • I still don’t care for face to face human interaction, preferring a digital life.
  • TO TEACHERS:
  • Teachers were generally supportive and encouraged my intellectual growth. I was in gifted classes and had exposure to high level courses; by age 12, I was studying science and music at UCB part time.
  • This created even more segregation and alienation from my peers and I was teased as much, or more, for my giftedness, than autism.
  • My difficulties in higher math, languages and balancing courseload were deismissed and I was told to “sink or swim”. I sunk.
  • Teachers did not realize a gifted child could also have concommitant learning difficulties and were often impatient with me.
  • After being removed from regular school at age 15, did not return and completed HS at a local jr college in one month attending nights. Graduated with diploma at 17 to continue college, with no degree. Did not know how to balance load and dropped out of many colleges. Enjoyed semester of Oxford best with its personal attention and single course.
  • ABUSE:
  • I was preyed upon by various creeps and abused without recognizing it.
  • After attracting a dangerous stalker, I researched abusers and identified the pattern of abuse in my own life.
  • Though painful to accept, I did, and now only have truly kind people in my life. They do not abuse me, nor I them, and this has encouraged peace and some stability. I surround myself with calm, placid people, so dealing with anger and other negative or extreme emotions in others is minimized.
  • The ARC Ccites from 20 to 70% of abuse for children with disabilite
  • COPING
  • At Autistry, we take one course at a time.
  • Last summer, took Spanish and got an “A”.
  • To parents:
  • When acting up, realize I am not giving you a hard time, I am having a hard time
  • When non verbal, I would like you to know, I feel bad and am not in control. I feel embarrassed and remorsefu
  • Though I can neither express nor accept much affection, I feel it as strongly as I can, and feel hurt or rejected when you act angry or impatient with me.
  • I do not express or identify my own emotions well. Do not assume you know what I am feeling.
  • For instance, sometimes I think I am feeling anxious when I really just have to pee!
  • Or I may look or sound upset without thinking I am. I am not dissembling – I really don’t think I am upset, but may be about to decomp.
  • Learn the signs of incipient decomp such as whining, increased stimming, repetitive questions, impulsivity, throwing things, light hitting of my chin, and gently steer me to a quiet place.
  • Speak calmly and don’t tell me to “calm down” My abuser used to shush me using that hand gesture, and it sets me off.
  • Don’t touch, unless actively injuring myself, then, after asking, I appreciate a bear hug. It reminds me of restraints, which are comforting.
  • When non verbal, sometimes I can nod “yes” or “no”
  • Once semi calm, can use my phone to type.
  • These episodes are embarrassing and I like to move on from them ASAP
  • Please do not prolong it with exhaustive post mortems.
  • Please do not take it personally.
  • I am very sensitive and upset by displays of anger or impatience.
  • Lastly, be patient with me.
  • CONCLUSION
  • THROUGH HELPING OTHERS UNDERSTAND MY AUTISM, I AM HELPING THEM AND MYSELF. WHILE WRITING THIS, FOR EXAMPLE, I CLARIFIED SOME ASPECTS OF MY EXPERIENCE.
  • INSTEAD OF ATTEMPTING TO DENY MY AUTISM, BEING BITTER AND WITHDRAWN, I AM COMMUNICATING THROUGH MY AUTISM OUTREACH AND WRITING.
  • THANK YOU.

 

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s