I reviewed this movie on my blog, here.
Here are more thoughts of mine and some notes that are not included in my review.
How I came across this movie:
While at the public library I came across this documentary in the non-fiction DVD section and borrowed it immediately. I had never heard of its existence. When I became a parent my curiosity expanded on the issue of health and wellness of babies and children. I first had an interest in Autism because its incidence was growing by leaps and bounds and I became aware of the symptoms to watch for in my own children (and I hoped my own children didn’t have it; they do not). A number of years later my interest became more personal when my brother’s son was finally diagnosed with Autism after years of getting the run around on giving his symptoms an official diagnosis. I love my nephew and am concerned for him, especially because he is non-verbal and is now 8.5 years old. I am curious about treatments and therapies and have concerns for the futures of the Autistics who are still on the lower functioning end in their adult years. I am unclear what will happen to these adults in our country. With the growing number of cases of Autism, being one in 150 children are now diagnosed as being on the Autism Spectrum, I think everyone in our country needs to be thinking about plans for the future. Our country’s systems are not set up any longer, to provide full services for adults who cannot function as fully independent who are self-sustaining. I wish more Americans had a general, basic understanding of Autism and its challenges and that they also would feel empathy for those with Autism as well as for their struggling families.
I watched the movie alone then decided to watch it with my kids. They struggle with emotions regarding their cousin who has Autism. The cousin seems to pay no attention to my kids, he doesn't play with them or interact with them. In the past, for years, every time we'd see him my nephew would pinch really hard, hit and do other painful things to my kids completely unprovoked (he was doing it to everyone in his life not just my kids). He would scream and screech at the top of his lungs, not making it easy to be around him. He also sometimes will destroy things our kids are making or be too rough with toys and wreck them. It is sad to say but my kids don't have much of a relationship with their cousin. They can be in the same room with him but he just ignores them now. Sometimes my eight year old (the same age as his cousin) says he doesn't like his cousin and the other day he said he hates him. I had a talk about him and Autism in general and asked that they both have empathy and try to find a place in their heart for him and to be tolerant. We watched the show together (me hoping they'd not ask what a Playboy magazine was) and we discussed the movie. I think it helped them see the other kids and their behavior then hear or read the words that the children with Autism said about being bullied or how kids who were pretty much non-verbal or talked mostly with echolalia could communicate eloquently through a typing communication device.
Here are some of the notes I took while I watched it as I wanted to remember these parts:
1. Elaine Hall, founder of The Miracle Project references Stanley Greenspan as giving her the inspiration to “join their world” and “do what they do” in order to connect with them and then bring the child with Autism out from ‘within their world’ into the larger world.
I had never heard of Dr. Greenspan but I just found this information on the Internet:
Stanley Greenspan M.D.’s official website. He uses the DIR Floortime ™ model of therapy
Dr. Greenspan authored a book for parents “Engaging Autism Helping Children Relate, Communicate and Think with the DIR Floortime Approach”
He also has written other parenting books about children with special needs as well as general parenting books, books about helping babies develop well, and books about the social lives of children. Here are some of them:
2. A moving part of the movie was with the mother of Lexi. She asks “what do I do with this information”? She knew something was wrong and went to their pediatrician and didn’t get a diagnosis of Autism or any other answers. Numerous health care professionals could not help them. Finally she got a referral to a center that would evaluate her daughter and after just five minutes was told “yes, your child has Autism”. This touched me because so many times doctors are not making a correct diagnosis.
Watch a video of Lexi singing eloquently. It is touching when you hear her speak using echolalia (repeating back what the other person says) or speaking with less intonation than she uses in her singing.
3. Lexi’s mother also said that her husband “always said it’s not up to use to judge the quality of her life but I find that a challenge”. She was discussing our society’s apathy and what appears to be that our society is not addressing the real issues with Autism. She worries about the quality of life of her child when she is an adult if she is not functioning at a certain level. She made reference to maybe the only job she could do was to push a brook at McDonald’s. This was quite emotional.
4. The boy Adam was called ‘obsessed’ with girls, especially one girl with long hair. His aide at school set a timer and limited him to play with her for just ten minutes at recess, as if that obsession was unhealthy. At the end of the ten minutes the boy stood alone in the busy play area with his hands on his ears, over stimulated and not socializing with anyone. I asked myself why do neuro-typical kids get to be ‘obsessed’ with their best friends in school and can choose to socialize only with them but a child labeled with Autism is not allowed to play freely with who he wants? If the goal was to have Adam play with a different child or a different group, well, that was not happening, so is not playing with the girl and the other girls better than standing alone among a sea of children ignoring him? I found this quite sad.
5. The boy Wyatt discusses bullying numerous times in the movie. I hate bullying of all kinds and to think of kids with Autism getting bullied really ticks me off. Wyatt seems to me to be highly functional with his verbal ability. He expresses his emotions well. What he says about bullies is correct. He wants to move into a mainstream classroom but fears bullies as he already is bullied in school by non-special needs kids such as when in the bathroom at school.
Here is a video of Wyatt speaking to his mother about his dissatisfaction with school and about the bullies.
Wyatt Part One---
6. Adam’s father Richard calls the mothers of kids with Autism “crazed mom of a disabled child” and "monomaniacal” and “self-involved with kids” and that his wife’s life ‘revolves around getting information and help” for their son. This man also had an affair for 16 months and his wife said she was the last to know, that everyone else around her knew. My impression was that he justified the affair because she was overly-focused on their child’s care and education. My reaction to this is what choice does a mother have? Our society has changed the way we treat children with different developmental issues. It used to be that at an early age, a child with symptoms of developmental delay would be put in an institution for life, leaving the family free to live a separate life. Now these children are living at home, they need someone to care for them, so mom can’t always keep working full time outside the home. The kids are expected to attend regular public school and many times are forced into mainstream classrooms also. The parents are the only ones orchestrating the multi-leveled health care services. It is a full-time job to manage the life of a child with Autism, seeking therapies and specialist consults, advocating for their education and so forth.
7. Henry (a talkative child with Asperger’s who has a passion for dinosaurs, reptiles and certain other creatures) is discussing sharks and why they attack surfers at the Project Miracle session. Coach E is trying to teach him to look people in the eye when he speaks. Coach E then asks Wyatt to tell Henry what Wyatt thinks about Henry. Wyatt said that Henry knows a lot about reptiles and he likes reptiles too. He likes hearing what Henry has to say about them because he is ‘smart’ and he thinks “Henry is smart”. Henry said “Thanks, I always wanted to hear that.” (This made me tear up instantly.)
8. The father of Henry is Steven Stills of Crosby, Stills, Nash and Young. Steven says that the only difference between him and his son is that he puts his guitar between him and the world. This was a short quote. I wanted to hear more of what he was thinking. If he thinks he might also qualify for a diagnosis of Autism how can it be that he has no label and is a successful musician looked up to by people, yet today children are getting identified with Autism and it is seen as something to cure? Can some people who are on the Autism Spectrum be ‘cured out of’ their gift or made to think they are worthless so they never develop their talent or are dissuaded from seeing their passion?
9. Wyatt gives a great talk about children with Autism who ‘go into their own world’. He hates to see kids going into their own world. He doesn’t like trying to connect with them to be their friend when they are lost in their inner world. He asks why kids go into their own world? Then he answers to say he knows he does it too. He asks if a child is always in their inner world, how can they make friends? He talks about Henry “going into his own world of blizzards and dinosaurs”. Wyatt says he likes to be with a friend, have sleep-over’s, and doesn’t like to be alone, so sometimes “instead of being alone” he goes into his own world in order to have someone with him. He then says he’d rather be with a friend, one that is not mean, rude and not a bully. "It makes me feel happy inside to have a friend."
Here is a video clip of Wyatt talking about kids going into their own world.
Title: "Wyatt Part Two"
10. In one part the mothers are together and talking about being a part of ‘a tribe’. Adam’s mom says that when one person in the tribe is doing something bad, it makes the whole tribe look bad, or if one in the tribe is not being helped the tribe should help them. Lexi’s mom then says that our society today does not welcome ‘autistic people in the world’ and says they are not valued. She says we can’t even get doctors to follow the law and schools to follow the law how can we make society value them as people? She said “they think she is weirdo. I can try to enlighten people who think she is weirdo but I can’t make them VALUE her”. I found the entire discussion of being valued as a person in our world interesting. This is something that has been addressed in the video by Amanda Bagg, a woman with Autism, in her video “Being an Unperson” which I had blogged in April 2008.
Amanda Bagg blogged on November 27, 2008 on the topic of ‘existing’ which is about this topic also. Here is a quote from the beginning:
It is not arrogant, stupid, foolish, bad, meaningless, or wrong to say that you exist.
There can be a lot of very strange patterns in the rest of the world, some of them involving people, some of them not, some of them seeming to come from inside of you, all of them basically boiling down to the message, “You do not exist,” in one form or another.
The post is profound and I hope you take the time to read it. People with Autism that are different than others do exist and we need to start addressing that fact.
I really enjoyed watching Autism: The Musical. I really think every person should watch it.
I think our society needs to be more honest about the situation at hand and start thinking of more solutions, to think about other ways of getting a best education for the kids at various areas on the Autism Spectrum and to think about what their role in society will be and who will help take care of them if they are incapable of fully caring for and financially supporting themselves.
Here is a video tribute someone made showing the five kids with Autism featured in Autism: The Musical. This shows the kids at different ages and doing different things, showing their strengths and interests.
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