Monday, January 02, 2017

Asperger's Are Us

I'm an early elementary educator who teaches children in regular education and also Special Education. I work with Kindergarten through second grade students. Some of the students I have worked with in the past have been formally diagnosed with Autism. They have landed on the Spectrum at greater or lesser degrees.

There is a heavy emphasis on helping children with autism, which is as it should be. Parents, families, the child, all need support and education.

However, I do worry fiercely for the students who are:

--diagnosed with autism early on and transition to adulthood where there are fewer external support systems
--have never been diagnosed with autism and are transitioning to adulthood and do not know why they feel or act as they do and don't understand why they are so different from everyone else.

In other words, what happens when an autistic child is ready to leave his or her parents' home and go to college...the military...find their place in a vocation? Where their life-long relied-upon support, understanding, help from parents, family, schools, therapists, doctors, and counselors have always been in place but now will dwindle to nothing? The support systems nearly disappear for the autistic adult. Achieving independent success as an autistic adult is a scary and difficult prospect. It's hard for any person not on the spectrum but it's very difficult for those who are. Managing one's autistic self independently is bewildering and difficult.

I came across this documentary about adult Aspies from Massachusetts who had formed a comedy troupe. I loved it! The documentary focuses on the young men as performers, as people, who happen to be autistic. I have to say I did love the comedy. Their jokes...I get.

You won't "learn" about Autism by watching this documentary. You will learn about four unique individuals who have dream and goals, work hard, have fun together, and are facing challenges. Just like everybody else.

After the movie finished, I searched for more information about the men. One of the men, Noah Britton, speaks to audiences about autism, and his TEDx talk in MA was interesting. Not the least is because it was captured on camera the moment he met Rachel as noted in the epilogue of the documentary, his girlfriend (or maybe his wife by now). He also spoke passionately against the use of aversives, using unpleasant stimuli to modify behavior and spoke specifically against the Judge Rotenberg Center. Methods such as loss of privileges, food denial, and shock therapy are still used at the Judge Rotenberg Center (JRC) in Massachusetts. They are the only facility in the US still using Graduated Electronic Decelerator (GED) directly on the skin.

My cousin Jennifer Msumba was a resident at the JRC and has spoken publicly about her experience there multiple times. In 2014 she spoke to CBS News, she testified before a U.S. Food and Drug Administration panel, and spoke up about her experience in many other places testifying to the horrendous impacts aversives have. She spoke about it this week in her Youtube channel:

Here, Jennifer speaks about what it is like to live with OCD.

Jennifer speaks with an articulate clarity and shining joy of life. As in this video!

Jennifer recently reached a life goal of becoming a member of Mensa. She plays four instruments, composes her own songs, arranges and performs cover songs, rescues poodles, and generally is amazing. Like the four men in Asperger's Are Us.

Jennifer and the four men in Asperger's Are Us have a good support system and seem to be making (or who have already made the transition) well. It's often a bumpy road, and for those without a support system, it often a road littered with roadblocks, potholes, and crashes. It's nice to see these men and women people doing and working and living and loving and laughing.


Grace to You said...

Thank you for sharing this information...I have appreciated gaining a better understanding of autism/Asperger's from you. I bookmarked the comedy video to watch later, but I did take time to watch your cousin's videos and was really moved by her experiences.

Elizabeth Prata said...

Thank you so much for watching it. I think she is genuine and articulate, she moves me too.

Anonymous said...

Hi Elizabeth,

I just watched two of your cousin's videos (the OCD one did not work for some reason). But I did watch her experiences at the JRC. I was absolutely ill listening to her speak of those atrocities. What she experienced was not even remotely any form of legitimate medical treatment, it was torture. Pure, unadulterated torture. I'm literally sick right now. I feel so sad for her, and what she had to endure.

Jennifer's other video was sweet. She is quite articulate and engaging. I admit I giggled when she mentioned that she didn't like her kalimba being tuned to an eastern scale (I wonder if it was tuned pentatonic?), and how she retuned it to a piano (octave) scale. I'd have done that too! LOL! If you hadn't mentioned asperger's, I would not have known!


Anonymous said...

PS: I went to your cousin's youtube channel. Found a link to her playing Bach's Prelude in C Major, from the Well Tempered Clavier. That's one of my favorite pieces, and it was delightful to listen to her play it!