Tonight, I gave a speech on life with autism at a local synagogue.
My favorite comment after it was the person who said "You have such love for the topic." I was so happy that someone could see who I was beyond the topic of the speech - see me, see my love, my passion, my self that just happens to inhabit an autistic body.
I spent a lot of time tonight contemplating how to validate myself and how to have different ways to understand my experience of things other than the quantity and quality of feedback I get from people.
Not being able to type much has maybe made this more of a necessity but is driving me crazy just the same!
That said, I got at least a dozen comments and conversations after the speech. We stayed at the oneg after to 10pm, literally to 10pm. Usually everyone's gone by around 9. As lovely as that was, like I said, I found myself contemplating how not to judge the quality of the experience by the feedback, which is new for me.
There were about 35 people, 12 minute speech, about six questions after.
It all came together very nicely, and it was an arena in which I had superb confidence and mastery of material, so it felt very enjoyable to speak and answer questions. I rarely have that much confidence. It was so refreshing to know exactly what to say.
To all the people who asked "Are you nervous" before.. No, I was nervous about my physical body and how well it would respond. But I was not nervous emotionally. I am nervous in everyday conversation. But I can't possibly be nervous presenting about autism because I know it like the back of my hand.
There were questions about savants, removing Asperger's from the DSM, non verbal learning disability, the nature of sensory and nonverbal language difficulties, what kind of services, accomodations would help, etc.
I met an OT who works in Portland schools and may want me to speak there, and a dozen other interesting people.
So, yeah. I think it went pretty well. A lot to process though.
I don't want to rest in the identity of disability. I want to find ways to access joy, love, fun with other people. I had no way of accessing the social world other than expressions about me, about pain, about disability, they were the only access points I had. But I am starting to see and feel the need to have ways of interacting with others that are FUN, that are light and easy. I just have NO idea how to do this, other than improv, but the random walk I had last night with a new friend put a hell of a lot more joy in my heart than talking about autism for 2 hrs, and I want more of the former. I'll take the latter if it's the only social interaction I can get, but it's not what I want. I have to find a way to acknowledge my disability and limitations while not letting them overrun and define me as they have been doing. My sensory and physical body limitations make this harder but not impossible. Where to start? I am hoping by validating myself and finding ways to be silly with people but as always I find myself impatient. I need to slow down and trust in the universe's power to allow me to access what I need when I calm down enough to see it right in front of me.
Alternately, if anyone wants to come over and sing 60s music with me, feel free. =)
If you like this, please be sure to visit my other website, Accepting Asperger's. A lot of my older writing is stored here, including an editorial I once wrote for the Baltimore Sun. Click here to see it: Accepting Asperger's.
What's it really like to be a 20 something with Asperger's? On this blog, I hope to explore that question. But this blog is not just limited to an audience of people in their 20s - this is for anyone who ever wanted to know anything about autism. I plan to delve into the nature and experience of autism, and examine it from as many angles as possible. I would like to start a conversation between people with Asperger's or autism, parents of kids with autism spectrum disorders, and anyone who just wants to know more. Let's explore what autism means, together.
My goal is to start a discussion on and build a community of people affected by autism - parents and adults with ASD - so feel free to leave your two cents in the comments section of any post. If you're too shy for that, however, or want to speak to me personally, you may feel free to email me at KGoldfie@gmail.com.
Asperger's Book for Sale
Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection.
Common Scents is the story of the last three years of my life. It gives a gripping view of what it is like to experience the world as someone on the autistic spectrum, and some would say, is an entertaining travel story as well. Because of chemical sensitivities, I engaged on a three year journey for a place I could call home.
Comments from readers:
"The Asperger's element is remarkable. I feel that I understand my son better, so much better. I laughed at this part.... because I've stared at my son in the same way for the same thing." - mother of an Asperger's kid
"Your writing style is SO engaging and interesting. It brings me right into the subject and I always experience a little emotional punch towards the end. In other words, this is the third time I've teared-up reading your work. Kate, you've highlighted ALL the problems with how social skills are usually taught." - mother of ASD kid
"I stayed up entirely too late reading the first 14 pages. I can relate to so much of what you write. I really think you are expressing the true experience with MCS and autism in words that convey the experience." person with chemical sensitivity (MCS)
"Absolutely interesting, insightful and witty. You've blended together your three themes beautifully (Asperger's, MCS and travelling). It seems seamless."