This year has been quite a ride for Ari Ne’eman. He was nominated late last year to sit on the National Council on Disabilities. His nomination was placed on hold anonymously just before the vote to confirm all the other nominees. He was later appointed to the IACC. Somehow through all of this he earned his Bachelor’s degree.

Now the news today, the anonymous hold on his nomination was removed and unanimously the Senate confirmed him to the National Council on Disabilities. (Read Disability Scoop for full details.) Having worked with Ari and the rest of the Autistic Self Advocacy Network this year to set up the Dallas Chapter of ASAN, not to mention on other projects. I’m very happy to say Congratulations Ari! No one deserves a seat more than you. Even higher congratulations are in order as well, not only was he confirmed, but he is the youngest to ever be confirmed to the Council at the ripe ‘old’ age of 22 and the first Autistic as well!

After a day to digest the movie, I’ve decided to write a review of it. This is my point of view of the movie. It also has a great deal of spoilers in it. I would recommend only reading if you have seen it or you don’t mind spoilers.

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The opening of the movie automatically grabbed me as someone who lost her father only two years ago. From there, the movie degraded into stereotypes of Asperger’s that I cannot see happening to any one person. Adam was an electrical engineer who worked for a company that made toys. While he was excellent at what he did, he took things a little too far, and ended up during the course of the movie being fired. IE, he was creating toys that were not within the price range of the company, and therefore was not making the company money. He ate the same food each day for breakfast, lunch and supper.

He had one friend who was more his caretaker and was a long time friend of his father’s. He spent lunches with Adam, and helped him settling the estate, and was generally a compass. Adam, after his father passed, went from having everything stocked and organized to having no food in the pantry and fridge and needing to do laundry because he had nothing to wear. Doing laundry is where he met Beth, his neighbor.

From there, they went further into stereotyping by showing that an Aspie would not help someone struggling. (Which the NTs in the audience laughed at, while I found it degrading.) They then showed how he degraded into a ball of nerves when things did not happen as he had expected. (I know what that feels like and cried my eyes out.) The next few scenes were a mix of very simple, almost child-like approaches to attraction and affection. Then was his announcement about being an Aspie, and how he perceives things differently than NTs. (He actually used the term NTs, neurotypicals in the movie. I rather hope I don’t sound like he did when he used the words. I had never seen it being so ambiguous as the actor portrayed it.)

Then it went to her studying about AS, and another few cute, child-like, innocent scenes. Him not understanding what she meant when she said she didn’t feel like company. Taking her out to a closed Central Park. Showing her raccoons and stating the line “They don’t really belong here, but here they are.” (This is significant for the last of the movie.) They seemed to me more typical of a relationship between two middle schoolers, or high schoolers, than that of a relationship between two late-20′s, early 30′s.

I immediately disliked Beth’s dad and ended up correct in my feelings toward him. (I wonder how much of this was evident to the NT viewers. Or if they just saw Adam as uncaring for his approach towards her father.) I disliked, but still appreciated, Beth pushing Adam out of his comfort zone. While I think she did the right things once she got him there, I think she could have been a little more sensitive. But these are issues I had with the character which was really nicely portrayed. I know that I’ve had the same thing happen to me so guess I relived those moments.

Then Adam became even more stereotypical. He showed an outburst of anger, which were not characteristic of him.. Showed him in a very awkward repeating the poses by Beth.. Which at first I didn’t understand that she was upset.. Then she started crying and visibly crying and rather than comfort her, he just went on repeating her. It was awkward and seemed very unrealistic of other moments in the movie where he showed his own feelings and showed that he understood her feelings. While they did show his perservations, I find it hard to believe that by the time someone is 29 with Asperger’s, they wouldn’t have figured out how to dumb it down. Perhaps that’s me putting myself into the character too much, but somewhere along the line, I figured out that most people are not as intelligent as I am.. And he would have had to live an EXTREMELY sheltered life, even in college, to have not noticed that there are just some people that will never “get it.”

In the end, when he and Beth are getting ready to move to California, and she asks him, “Why?” He wouldn’t have said what he did.. He would have either been unable to answer, not because of lack of understanding the question, but being unable to quantify it.. Or he would have just said the line “You are a part of me…” and reiterated the “I love you.” Or he would have just said the line, “Because you can help me find a place to live, and how to get around and get to work.”.. He wouldn’t have been unable to quantify it, said the expressions of love AND given the logical answer.. I don’t know any one person that would have come up with all three of those responses within that time matter.

Also, I think that the last part was inaccurate. He figured out how to get to her parent’s house in the suburbs. Went through all the process to get there. He understood that he needed to tell her he does love her.. I also think it was quite clear that both of them did share moments where they knew what each other was thinking. There is just no logical reason that he needed to go from “I love you..” “You are a part of me..” to “I need help with daily living skills.”

I did appreciate that they showed him deciding not to go to CA, then reversing that decision because of his love of Astronomy. Then it degraded again into him not understanding what his friend was saying with the “I’m trying to thank you.” Though, I had no clue what he was talking about at first as well.. But then when he said that she was as stubborn as he was, it clicked. But still, there’s no reason that Adam couldn’t have just said “You’re welcome.”

Then showing how in just a years time he went from being totally socially inept, to understanding by himself, that he was droning on. It didn’t seem accurate. Like, that one moment of deciding he had to leave for his life… changed how he perceived the world? Or that the last month with Beth showed him appropriate life skills? I didn’t get it..

The ending would have been fine with me if not for the audience. I felt that the ending was bittersweet, and identified the character as having a bittersweet feeling. Where as the rest of the audience left laughing. I was crying my eyes out and everyone around me was laughing. It didn’t seem right to me that just because he smiled they felt he felt good about what had happened. I thought it was more what we are told are “inappropriate” responses to our inner feelings. He had the same smile at the first of the movie after his father’s funeral was over.. The same smile when he was given his severance check… There is no reason to think that that smile meant happiness.

Okay.. Sorry to end it angry. But that was my feelings on the film. They created an inaccurate AS man, IMO. They created someone that cannot possibly exist. While all these things can happen from person to person with AS, there is just no way that one person would possess ALL of the characteristics.

I was going to do a rant, but got interrupted. Luckily, it gave me some time for reflection and I’ve decided to turn away from being a rant. This is a response to Sarah’s New York Times blog reply, Kristina Chew’s Change.org blog, and Sarah’s blog reply to comments made. I feel it’s quite pivotal to read the three of these with comments before reading my reply. Though, I’ve been known to be wrong. Hopefully, it will make sense even if the posts aren’t read.

I think there are distinct differences to the way the many NT parents parent their ASD child(ren). This is not to say ASD parents are perfect. Hardly so.. but I think our own lives and what most consider “success” means we understand how difficult it can be for our kids.

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I’m going to go a little into my backstory as I think it’s pertenant. I grew up in a dysfunctional household. My mother, whom I believe to be AS-like if not AS, was the primary caretaker to myself, my sister (NT) and my brother (undiagnosed Autistic). She was married to my father who was an alcoholic. (I say was because my father passed two years ago, not because they got a divorce.) With my Asperger’s and my father, my anxiety went through the roof at a young age. I do not remember the better part of my childhood as a consequence. (The history for my diagnosis was based on information from my mother and what little I remember.)

I scheduled every part of my life as well as my brother’s. I stayed busy because I enjoyed it. I didn’t notice a lot of my quirks (though, now I recognize just how different I was) because I didn’t have enough time to stop and think about it. My mom also kept me going. I wasn’t allowed to have a job during my high school years (allowed by either my mom or dad) because it would take away from my school. I didn’t get my first job until I was just over 18. I worked at Subway for 3 weeks with the last week being filled by complete physical agony because the stress became too much. I then switched to a much nicer job of tutoring math to people who could easily be my parents by their age. It was quite lovely to be honest.

Then I moved to go to college. And that’s when I fell apart. I didn’t have every second scheduled so I started realizing just how alone and lonely I was. I didn’t quite fit in with most people. I wandered the school grounds for the first couple of months barely knowing anyone. I got lucky to find a group of friends who were sort of like me, some of whom I still have the pleasure to call my friends. (Okay. I lied.. I didn’t find them, they found me.) But still, I couldn’t handle the stress. Not of classes, classes were great. I loved what I was learning. But I couldn’t handle testing. I couldn’t handle paying bills correctly, or managing money. I was majoring in Physics, had a firm understanding of math, but for some reason just never could get myself together enough to do what I needed to. I tried for nearly 2 years to make it work. I did not succeed. I stopped when I got pregnant with my oldest. Not because I got pregnant, but because I finally conceded loss.

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I can see what happened to myself. I know how I could have done things differently and possibly been “more successful” so to speak. (I do plan on finishing a degree. And next time, I will be getting the help I need.) But it also makes me realize what I can do to help my kids. I have enough foresight to see how certain things can set them up for failure.

As parents, we all change how we do things for our children. I don’t care what type of parent you are, or how your child’s brain is wired. We all want to see our kids succeed and be happy. But understanding the difficulties ahead, I feel ASD parents are a little more equipped to help  their ASD children.

Just a few examples:

My insistance to keep myself busy all the time set me up for failure. I couldn’t handle it when I had spare time. Life is filled with spare time. It took me several years to figure out what to do with spare time. This seems to be a problem for most ASDs, or so I’m told. “They” tell you to make sure there is little to no down time during your ASD child’s day. I disagree with “them.” I don’t think you need to schedule it in, but I think you should equip your child with ways to cope.

People are known to give their children down to the minute schedules. Daily schedules and present it at the beginning of the day. I tried those for myself. You know what I found? I couldn’t handle anything going wrong. It stressed me out as I didn’t know what to do with my previous plans. I say don’t make those schedules. That is not to say not to have your day totally unstructured, but leave yourself some leeway. But have an order to things. B will happen sometime between A and C. B does not have to happen immediately after A or just before C. Example: We take my husband to work in the morning. Sometimes we take him to actual work, other days we take him to the train station. It happens every day, but not necessarily the same time every morning. After that, we eat breakfast. Now we may eat breakfast as we’re taking him to work, or we’ll eat it on the way home, or sometimes once we get home. It’s still structured, they still know what to expect, but it doesn’t have to happen a set way every day. I also use the same idea with routes travelled. I change which way to get to the same place. This way, if there’s an accident and we can’t use that direction, it doesn’t disrupt the kids whole day.

It’s simple things. So far, my children are progressing wonderfully. I even got a spontaneous, non-prompted sharing of one’s day today. He made an ocean with seashells. It was a beautiful moment especially considering 2 years ago he could barely say 5 words. They are both happy. Yes, they do have their meltdowns. Yes, sometimes they are difficult as all children are. (Have you tried watching an NT child? ACK!) But if we can just step inside their shoes, we can hopefully understand what is provoking that response. Then we can help them. And we also are rewarded by having a happy child which means our own stress is relieved.

This was the person I had no preconceived notions about. I had no idea who he was let alone what he would have to offer. Imagine my surprise when I was blown away by his presentation. He spoke on social skills and many of his ideas were really good. If there were someway to translate them to adult life, they’d be even better.

A lot of his focus wasn’t on what the child was doing, but the way the adults approached it. Then after the approach, they spoke on how to help the child. When then child had learned everything, how they taught their peers. It was very nice. He also used examples of how the Asperger’s or Autistic child felt without making light of the situation.

Overall, I came away feeling very good. So good, I actually waited in line to speak with him. (I will speak on the line experience probably tomorrow after I get the full affect of the conference.) I thanked him for his gentleness in approaching the subject of how the Aspie student felt. So overall, very very happy.

I have so many things I’m wanting to touch on. I think tonight after the boys are in bed I’m just going to have to start making posts. I will wait to publish until consecutive days. I would like some input as to what those of you who are reading would like to hear about.

In the upcoming days, I’m going to be discussing Self-Advocacy on a Global Level, Issues with Cassandra Affection Deprivation Disorder, ABA to the Autistic Family, and Reinvention of the Family.

Please give me anything you would like to read about.

From here

To put the story simply, last year, one poor little boy endured the unimaginable. His kindergarten teacher put up for vote who in his class wanted to kick him out. They suspended the teacher. The ruling came down today that she will keep her tenure, her job and her contract.

This scares me, for kids like myself, for my kids, for the whole of the Disability community. We are not being heard. It would be one thing if we weren’t speaking up, but that’s not it at all. We are being ignored.

This is a stark reminder for me. We need to push the envelope to make ourselves understood. Otherwise, this will keep happening. We will keep being ostrisized. What’s worse is our kids will be as well.

And a brief warning, don’t read the comments following if you don’t have a strong stomach. There are some very cruel and heartless comments from so-called adults. It shows just how far we have to go to be accepted.