Autism Everyday and My Response to the Editors

This is the exact leter I sent to Autism Speaks upon viewing their 13min internet version of Autism Everyday. They claim to speak for autism and the autism community... Well I am Autistic and I am Speaking. Now are they gonna let me speak? If they don't put my letter up as part of the feedback, hmmmm....yeah... I feel a bit slighted...

I like it when the parents talk about not giving up and working with their children. I believe that kind of persistence and determination will go a lot further than anything else. As an autistic individual (diagnosed PDD NOS at age 6) I believe there is a lot of self will it takes as well as support from the parents. It helps to have a high self esteem and a positive outlook for both the child and parent. But I'm glad my parents took a different approach. Rather than working against my autism, they worked with it and helped get me connected with other individuals with autism that have a positive viewpoint. That positive viewpoint helped get me through Jr. High and high school and make the honor roll. It's important for the autistic children as well as the parents to know they are not alone. Autistic people may not always show their emotions, but you can be sure they feel the same emotions any other human does.

As far as the rest of the video. I see comments about why is my child melting down? I too had meltdowns like some of those. If you really want to know ask me. I may not be able to say exactly why your kid is melting down, but I may be able to help explain what triggered meltdowns with me. There may be some things in common. I'm willing to help share my piece of the puzzle. Some of the meltdowns were anxiety based. For instance if I couldn't find x item, and I felt like I'd be late, that would stress me out. It also helped to have some item to carry with me. (Usually as an adult I take my sketchbook with my drawings and some paintings. As a kid, it was often a bug I caught outside that would be a comfort item.) Shopping trips: My mom liked to shop at various places and run several errands in one day. Some of the stops were good, but others were boring. If I was being taken to a place I didn't like, I dug my heels in... Going to a place I like…chances are I behaved much better… I also sort of had a “what’s in it for me” attitude. If I was going on a long trip I wanted to come home with a “one thing”. If I had that incentive I behaved much better. I also don't like just spontaneously disrupting whatever I was doing and going places. I like to know ahead of time where I am going and for how long. Imagine you’re in the middle of a game (a "boss" level), full concentration and no chance to pause it. Suddenly you’re expected to just drop everything and go… Leaving something I am highly concentrated on, unfinished to me feels like leaving the house with the lights on, doors wide open, and the faucets running. It doesn’t feel natural. I like to be warned ahead of time and know when to find a good stopping point with whatever I am doing.

Other meltdowns were tactile. I didn't like my arm being held onto. If my parents tried to hold my wrist, I'd try to break free. Eventually we worked out some kind of agreement. "I won't hold your wrist if you don't wander." I think it helped. I still got distracted at times, but I knew not to bolt out into the street without looking for cars. I had an autistic-like step grandpa who taught me that behavior and insisted upon it every time before crossing a street.

Coping with meltdowns: I'm learning to spot my triggers and cut them off at the pass. If I feel my anxiety level rising and I'm in an argument, it's time for me to back off and come back later when calmer. In the mean time engage myself with a more favorable activity. If you're a parent and your kid is having a meltdown out of frustration, it's time for a break. See if you can direct the child to something they enjoy to cool down. Approach the task later. Don’t try to push on. It won't work.

Hopefully some of this helps. I want to see more of the positive ends of autism and more shown on the gifts along with the meltdowns. I'd like to see a more balanced view of all autism. Not just the poster children. It shows some autism, but just like some people criticize the autism advocates, this video doesn't reflect the full view of autism for everyone. Not every parent with a nonverbal 2-3 year old will have a nonverbal older child or adult. I didn’t start to speak until about age 4, but once I got to talking, they couldn’t shut me up. Now I’m highly verbal. Most people just from looking at me wouldn’t guess I am autistic. That goes to show there’s a lot more to PDD NOS and autism than what is shown. There needs to be more shown on both ends so autism is not viewed as something to be feared...


Sincerely,
MJI