Yesterday I went to an autism symposium featuring speakers Ami Klin, PhD and Celine A. Saulnier, PhD. The talks were great and I plan to share all of the information I gathered and learned from the day as I did last year. (You can read that here.) I need to process it all. It was a lot, but very good and positive. Judging solely on their talks, small portions of their research they shared, and their enthusiasm for advocating for the autism community I left feeling very hopeful. There seemed to be a constant message filtered throughout their talks.

In my own paraphrase:

“We have to do more to help the adult ASD community. We have to do more in helping get early diagnosis and intervention. We have to equip and educate parents better. We need to teach those on the autism spectrum functional abilities not just the act of doing them. (An example used was with eye contact.) Instead of only teaching them how to make eye contact, teach the functionality of why we make eye contact. Why is it important and helpful to make eye contact? What are the intentions/context of what is being taught to a child/person who is autistic?”

While that is clearly not exhaustive, I think you see why I was so hopeful.

I felt they had genuine motives for wanting to see children/people on the spectrum succeed in life. It will take a few days for me to get all of it written. I am still overwhelmed with emotion and sensory/social overload from yesterday. I need to process and deal with that before I can do anything else. I was doing great in the morning. It helped writing my Pi post it made me calm and focused. I was running a little late because of it, but I managed to leave on time. I was stressed because I had to stop and get gas, but I managed to stay calm. The drive went well; I listened to my music and enjoyed the nice weather. I forgot that I was going to have to go over the gigantic, humongous, ungodly enormous bridge that looks like it is only hanging from wires. I can panic on bridges; I think it’s the feeling of not being in control. I focused on getting over the dangling giant. An anxiety diversion for me is water. I looked at the huge body of water, quickly to get a glimpse of ripples that went across it and it made me smile.

I had to force myself to look back at the road though because I can be sucked into staring at water.

I finally made it to the entrance of the university and went blank. I could not remember which way to turn. The directions do not put the actual street that the building is on — I have forgotten this every year. It is not only me last year David got all confused as well, but in much less time than myself the year before. I turned this way, then that way, then this way again. I went into loops — I ended up in strange places on the university grounds. I could feel the tears welling up and my mind start to attack me. “Why couldn’t I find it? What is wrong with my brain? Why is it completely blank?” All of the scenery started to blend I could no longer determine which way I had gone before. I kept looking at the clock freaking out. I was so happy that I had arrived thirty minutes early, but now I was watching all of my minutes disappear.

Finally, when the tears started to become uncontrollable I told myself to call David.

I called and he didn’t answer. I called again and he didn’t answer. I really started to panic. I called again and he answered. I have no idea what all came out of my mouth. I was stuck at a light at this point (They have the LONGEST lights!) I started yelling things like: “Why can’t I find it? Why do I do this? What is wrong with me?” He tried to calm me down and he told me to pull over to try to calm down. I was only partially listening to him at certain points his words didn’t even sound like words. I started hyperventilating and couldn’t get my words out. In between deep breaths came:”I can’t-I cccaaa-cccaaa” I eventually screamed out a nice F-bomb three times. The people who know me well know that if I say curse words it can send me into immediate guilt. I do not condemn others for saying curse words, but I believe because of past things said to me I feel like I am bad or wrong for doing so. I know it’s not logical, but the feelings still come. I do not use many curse words.

I was trying to get out that I could not pull over.

I was stuck in a traffic loop and trapped between cars in the flow of traffic. He gave me landmarks to look for and once I saw the first one my memory started to come back. I found it right away. I was so upset with myself because I had turned every turn, but the correct one and I didn’t know why! I didn’t have time to deal with that I made it right at 9:00am and quickly went in. Thankfully registering was a pleasant experience. I prepared myself for the panic of seeing all of those people in the room and trying to find a seat. I didn’t see people I saw blobs, and dark blue chairs. I looked for an empty chair and went for the first one I saw. I am SO thankful I chose that seat. I managed to ask if the chair was taken and the woman was very kind and said no and offered for me to sit there. I had planned to be in a shut down state after what had just occurred before I got there.

The woman was very social.

It ended up helping me quite a bit. She shared that her grandson had Aspergers and she was coming to the symposium to learn more and share it with her son. He lives far away so he was unable to come. My mouth had no control. My anxiety, stress, and the already sensory overload I was feeling from the room and popping sound system took hold, I had no filters. (Add lights, food smells, perfume smells, there were more, but I will stop.) I blurted out: “I have Aspergers, my son is considered high functioning (whatever that means), and that my other two kids show traits. I have a blog, there are many resources on there, and I have links to many other adults/parents on the spectrum and OH! I am linked to the Autism Blog Directory that has all perspectives and is very beneficial. They have some links for when you first get the diagnosis.” Blah, blah, blah She told me how I seemed to be doing well. I shared with her a little about my meltdown before coming in. (Side note: I later had a slight panic because I realized that I gave her my full name and blog address. I am semi-anonymous for various reasons so I had to tell her that I was anonymous.)

I did what I always do — I toned it down.

I never want anyone to worry about my mental state or be concerned so I tone down my actual feelings and act like everything is ok. I have had too many people misread my meltdowns as severe emotional problems when in actuality I am having intense physiological happenings and need to scream, throw something, sob, or say whatever is flying through my mind without judgement. I told her that I had learned how to hold everything in until I got home. When I said that out loud I had a moment of realization of how I have learned to hide so much about myself. I have learned to hide my quirks, my anxiety, my fears, my meltdowns, my interests, my love, anything. I have learned to hide so much of me and that is not living in this world — it isn’t even surviving. I don’t even know what to call that. I shook it off and continued to talk to her. In the middle of this, another woman came and sat down. I completely shut down. I didn’t know what to say or what to do. I looked at my packet and stared. The woman I had been talking to jumped in and introduced me to the new woman. It was as if I was having an out-of-body experience. I was watching the woman introduce me, seeing her mannerisms, and hearing her words, but it was foreign to me. Yet, logically I know this is what I should have been doing for myself. However, I couldn’t.

The new woman was a mother of a son on the spectrum and a teenage daughter with Aspergers.

Both of these women were wonderful. The woman (the grandmother) who I had initially been talking to, shared with the other that I had Aspergers. I could see the comfort and motherly type feel both of them had toward me after I had shared. I had it flash through my head how I get this a lot. People want to take care of me, but I am so independent and capable in many other areas that it confuses them. It confuses me too. I don’t know what to do with it, I want to have people there, but I also do not want to depend on anyone. Strange. I felt at ease and calm when the first talk began. After the talk was a different story. I sat there listening to this man describe me word for word. I was consumed with the fact that I sat in a room full of hundreds of people and I didn’t understand any of them. I felt so alone, and isolated in my thoughts as he shared repeatedly how the autistic mind is different from others.

He never spoke about it in a negative context it was always with the purpose for the group to understand.

Still I could clearly feel that they did not. The words “This is a social disorder” rang through the whole talk. It was the first time I understood just how much I am socially disabled. I watched as people laughed at things that I did not get. I listened as he shared stories that were describing me or my children. I watched video clips of kids/adults on the spectrum that made my revelation solidify in my brain. I AM SOCIALLY DISABLED! The tears came up several times during the talk and I swallowed them down. I was both happy and sad at the same time. I was reading about me and understanding more of me — I was also realizing that I am indeed very different from many of my fellow human beings. One of the things that was mentioned was that those who are higher functioning tend to have higher anxiety and depression because they are acutely aware of how different they are. I had that hit me like a ton of bricks as I turned around and faced the other women sitting at the table.

Both of the women next to me shared how it was a good a talk. (Subject matter — it was somewhat hard to hear him.)

I sat staring holding back the tears and said: “I am overwhelmed”. I do not know what else I said, I tried to describe what I was feeling, and they immediately went into comfort mode. It was fine, but I wasn’t seeking comfort I just needed to process. I went into my sharing information about autism mode. It is a special interest and I have gathered and consumed so much information about it that I can talk for hours, days, and years on the topic! As we sat there talking I would wait my turn, talk, interrupt, say sorry, but continue to talk. They were very kind about it and didn’t seem to notice, I didn’t either, until the talk began again and he described how a person on the spectrum tends to communicate. He said that it is as if they have a continual conversation going on about their topic, they will stop and turn take, but they will begin where they had initially stopped in the conversation. It is as if they pause, and then start up until they finish to the end of their conversational loop. He said it is as if they are having a conversation with themselves at times.

Now some of this could sound negative it is not.

I am not giving full context so do not make any judgments of him based on these fragments. I am sharing this because he described exactly what I had done only moments before, but didn’t realize it. I thought: “OMG! I wasn’t truly listening to them I was thinking of the conversation in my head and what I needed to get out!” It wasn’t that I wasn’t listening to them — I was just more focused on what I wanted to say. I also realized that I do this in social settings that are not one-on-one. If I am one-on-one I can stop my conversation loop and pay attention to the person most of the time. In social settings with multiple people, it is too much. I need my conversational loop to survive. I need my special interest topic to be my focus otherwise; I will shut down, or get overwhelmed. There was so much more I hope to tie into the other post I will write. To give a feel though of how awkward it was for me at times he asked the question: “How many of you have counted the light fixtures in the room?” I almost raised my hand, but quickly realized that I shouldn’t.

I have counted them there are 258.

That is as accurate as I could be based on the three years that I have sat in that conference hall sitting on the same side every year. In order to get a complete accurate count I would have to walk the entire room, but I am fairly confident that is that correct number. There are also 12 rectangles that surround the huge rectangle. They keep all of the 258 square fixtures tightly tucked in a nice order. I had to place tissue in my ears because the popping and buzzing from the speakers were making it so difficult for me to sit in there. I covered my ears when they clapped, I was startled when their videos were too loud, but overall I held it together very well. When I left, I was feeling more positive, and I remembered to say good-bye this year to the women I had talked with. I did not the last two years in a row sorry other ladies I met before. (Here is my post about the social stuff from that  symposium.) I think it helped me a great deal to see these doctors be so supportive and understanding to the autism community.

It also helped me a great deal to be next to these two wonderful women.

The grandmother, thanked me and told me that I was helpful. I really hope I was — she helped me too. The mother I sat next to, had many similar experiences in her journey with autism. It helped me to hear that she had the same struggles with her son at times and no answers as to how to fix it. Sometimes people/therapists can make you feel like you are doing something wrong if the method or ideas do not work for your child. Every child is different — what works for others may not work for my guys and vice versa. He stated that people with autism need to learn about themselves. I will write more about this later. It was very good to hear and confirmed for me that I am not the only one who has been utterly confused about who they are. Also, that I have been on the right track with trying to discover the “real” me this past year. They said every child/adult with autism is different, they need individual plans, individual helps, and they need to have their own success plan. To that, I say AMEN!

There were so many good things I want to share, but this is rather wordy already so good-bye for now.

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