Ego Sum: Think Differently About Autism
Ego sum: That’s my Latin translation of “I Exist,” which is the name for the second phase of the National Autistic Society’s “Think Differently About Autism campaign. The NAS is launching a campaign specifically about adults with autism because:
Autism is a lifelong condition and children with autism grow up to be adults with autism. Our survey of adults with autism and their carers found that most are isolated and ignored. A lack of recognition that autism affects adults, a lack of understanding of people’s needs, and a lack of suitable services means that most adults are prevented from realising their true potential. I Exist aims to transform lives by campaigning for better support and services for adults with autism.
You can go here for a PDF file containing the NAS’s report, which contains some troubling statistics from a survey (63% do not receive enough support to meet their needs; 15% are in full time employment) and compelling portraits of individuals with autism.
“I Exist” gets to the heart of the autism issues that mean the most to myself and my family. My son is 10 years and some months old; he’s the same height as me, doesn’t have a lot of language, stomps and warbles and does other sorts of attention-attracting things at the store, on the sidewalk, in the pool. I remind him gently not to get overly loud “because we’re in public” but people seem to note him regardless of what he is doing, when they see that Charlie has neither the mannerisms nor the conversation of your “average” pre-adolescent Jersey boy. Or perhaps I should say, people seem not to note, as—-as Charlie has gotten taller, his shoulders stronger, his shoes bigger—-eyes gets averted. People must hear the chortles but walk on with a studied look of “I am minding my own business.” Of course, people will do what they need to in public but sometimes I get the feeling, that Charlie is rendered invisible by those gazes aimed the other way. That people are very glad to talk about difference, but still careful to walk around Charlie as he hovers over the sushi case as I remind him, “what you touch you take.”
My son has a lot of challenges—his lack of language, his cognitive impairments, his behaviors—-and I am more and more sure that, had he lived a generation ago, he would have long since been institutionalized, and not seen at all. I think too of the students who have come into my college classroom and who “have that something” about them, who can do the work but struggle to get to class on time, study for the final, tell me why they couldn’t come to class—-maybe because their anxieties got too much to them? because they have unseen medical or other needs that have made being in school a longstanding challenge? But most of all, I’m glad to see those students and know I have to brainstorm how to make my classroom suit their needs, how to get creative and teach them differently, too, just as Charlie has thrived because his teachers have though differently, tried differently things, and never given up.
I’m sure you’ve all heard of the philosopher Descartes’ oft-quoted phrase cogito ergo sum, “I think therefore I am.” I guess you could say I had this phrase in my mind in thinking about “I Exist” —the NAS campaign—-as ego sum. Because that’s the truth of it with Charlie, for me: He is, he’s here, he’s got places to go and things to do and learn and we need to help to make that possible. Even as we keep going round in endless orbit about mercury in vaccines, Charlie is here, adults with autism are here, and have always been and—-for me, as I think ahead to our life with Charlie—will always be.
Tags: asd, asperger, autism, autism spectrum disorder, children, cogito ergo sum, descartes, mercury, pdd-nos, Psychology, VaccinesRelated Stories
POSTED IN: Adulthood, Autism Organizations
6 opinions for Ego Sum: Think Differently About Autism
Lenora
Feb 5, 2008 at 6:09 pm
What a beautiful and timely campaign. I have a ten year old as well and wish there was a better visibility of autistic adults for him to model. Its all well and good to hypothesize that Einstein was autistic, but Einstein is as unreal to him as Darth Vader.
Anon
Feb 5, 2008 at 6:22 pm
Have you taught distance classes? I wonder if their asynchronous nature, along with other aspects of remote teaching, would be helpful to some of these folks?
Kristina Chew, PhD
Feb 5, 2008 at 6:29 pm
I have—–taught a Great Books course. The students had to do a lot of writing (and reading) and I do think they were all able to “say” more than they might have had in a regular classroom.
Casdok
Feb 6, 2008 at 7:19 am
I Exist, i think is a great name for a campaign. As my son is non verbal and very withdrawn he does get left out a lot.
Ron
Apr 21, 2008 at 3:32 pm
I almost don’t know where to start. I hear everyones frustrations with the schools, health care providers, Department of Education, their children and themselves. Burnout more often than not. Spouses that leave never to return again…….and so it goes.
I am an advocate for children and Adults with Autism. I have been working with them since the early 80’s. I think my favorite quote on the subject is my own “What works on Monday might not necessarily work on Tuesday”.
My success generally speaking comes from mostly “out of the box” modalities. I am very hands on with my approach. The first thing I establish with the student is a two-way trust. I have found that I can get them doing things that they or their parents thought were impossible. I am not a miracle worker and I do not even consider myself an “expert” on working with Autism. I “listen” to them even when they are not speaking. I find out what they love to do(if it is a healthy thing) and think of creative ways to get them to do it. Once I have developed their trust and do the fun(for them) stuff I start adding things that their parents, IEP or other team members suggest—I do not always agree with the parents, IEP or other team members and of course this starts some of the “Strained vibes” that often occur around these cases. In fact I call the DOE here in Hawaii the Department of Extinction—Good Special Ed. teachers don’t last long. Don’t get me wrong, there are good teachers in this very cumbersome system.
So parents—What to do—Hang in there!! Try new things—Speak out—Advocate for them. Video your kids and show them the video. Have them be the videographer—Take them on a field trip somewhere in nature and let them video it. Teach them to give and get massages. Play mozart, teach them to play mozart. Try Brain Gym, write on different colors of paper, music therapy, dance therapy,horseback riding, kayaking, watersports, take apples to folks in a convalescent hospital, animal therapy both receiver and giver!! Sing together. Get respite to avoid burnout. Start an Autism support group in your area.
……AND MAYBE THE MOST IMPORTANT THING OF ALL KEEP ON TRUCKIN :)
Kristina Chew, PhD
Apr 22, 2008 at 1:42 am
The Department of Extinction! I am going to have to remember that one……. one thing that gets forgotten is supports for teachers and therapists, esp. (based on previous experience with another school district than the one my son currently attends). Just took my son (just the two of us) for a Saturday afternoon in Manhattan; a real advenutre and very worth it. Thanks for your good spirit!
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