Aspergers on TV

I have been going back and watching the old seasons of The Big Bang Theory, Parenthood and Third Rock from the Sun.  For the first two, I was curious to see how aspergers (or what the public sees as aspergers in the case of The Big Bang Theory) was being portrayed in the media.  I know opinions in the autism community are mixed on these shows, so wasn’t sure if I should post about them.

I had mixed feelings while watching The Big Bang Theory; while I like the show and find it very funny, I also felt weird about laughing at issues I could see my son having in the future.  It is great, however, to see characters who have difficulties being successful in life.

Third Rock from the Sun I started watching just for something else to watch, but was struck by how similar it is in feel to The Big Bang Theory.  There is a group of aliens who come to earth and often don’t understand or misinterpret what humans do.  Many times we laugh because indeed it is funny the things humans do and the things we say don’t necessarily make sense; words taken literally will frequently be misunderstood.  The aliens interpret things in very similar ways to the way someone with autism may interpret them.

Parenthood I also like and think the exposure of aspergers to the general public is a good thing. There is the danger of people assuming that is how all kids with aspergers are and as those of us with experience know, each and every child with autism and aspergers is slightly different.  I like being able to watch the show and relate to things the parents may be going through or thinking about.  I may have a different approach or opinion, but it gives me food for thought sometimes.

Note: I am not much of a t.v. watcher, so I have only seen these shows past seasons out on dvd and have not seen the last or current season since these are either not out or hard to get in libraries…

Respectful discussion of these shows or introduction of other shows with autistic characters are welcome…

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Movies about Autism

There are several great movies out there about people with Autism.  It would be great if these movies were held by every doctor’s office that delivers autism diagnoses and loaned to parents so they have some real life examples of what autism looks like.

These are the ones I have watched recently.

We thought you’d never ask: voices of people with autism is a video of 6 autistic adults varying from non-verbal to highly verbal.  They talk or type using text to speech devices to share what Autism is and what the challenges are and what the benefits are.  They also talk about what good support means to them.

Vectors of autism, is a documentary about Laura Nagle,an autistic adult architect.  It presents information about what autism is, her personal experiences, snip its of a few other autistic people and spectacularly artistic filming.  One part that really resonated with me was her difficulty in accepting that she has a disability and deserves disability assistance.  I too had a hard time applying for assistance for my son, especially since it is under the department of Children’s Mental Health and this doesn’t sit well with me as it is not a mental health issue, but rather a neurological one.

Wretches and Jabberers is a documentary of two autistic adults Tracy Thresher and Larry Bissonnette who travel to Sri Lanka, Japan and Finland with their aides and meet up with other autistics.  It is really neat to see how they experience the world and connect with others worldwide who are similar to them.  Both have limited speech and use text to voice typing devices to aide them in communication.  My frustration was that sometimes the filming went to fast and I was unable to finish reading what they had typed in its entirety and I really wanted to read all that they had to say.  As much work as still needs to be done towards autism acceptance, it was nice to see that the United States is leading the way in this direction as other countries are still much farther behind.

Temple Grandin produced by HBO is a documentary about her life, growing from an autistic child to a highly successful adult in the slaughter house industry.  In spite of recommendations she be institutionalized, she is guided by an extremely supportive family and a few teachers who encourages her in her strengths which allows her to be successful.

Positively Autistic is a documentary put together by Canadian CBC news.  It has interviews with leaders in the Autistic Rights movement.  Amanda Baggs is an Autistic Right Advocate who is nonverbal, but uses blogging and videos to communicate.  Estee Klar-Wolfond is a parent of a child with autism who has started the Autism Acceptance Project and The Joys of Autism blog.  Ari Ne’eman has Aspergers and is the Founding President of The Autistic Self-Advocacy Network.  Michael Moon is an autistic musician and photographer, and is also President of the Autism Acceptance Project.  Laurent Mottron, M.D., Ph.D., DEA, is a psychiatrist and researcher who specializes in the study of autism in the Department of Psychiatry at the Université de Montréal.  Scott Robertson has Aspergers and is the Vice President of the Autistic Self-Advocacy Network.  The movie is a good mix of information and personal experiences.

There are also some great fiction movies out there that have main characters with autism or could be assumed to have autism.

I blogged previously about Extremely Loud and Incredibly Close.

Adam is a movie about an adult with aspergers who is living alone after his father’s death.  He emerges from his social isolation to strike up a relationship with a new neighbor.  There are many bumps in the relationship due to Adam’s social difficulties, but it is a realistic portrayal of a lovable autistic adult who is positively portrayed and able to succeed in life.

The odd life of Timothy Green does not specifically say its main character has autism, however, many of his actions could be interpreted that way.  But it is not really a movie about disability or differences as much as it is about parenting and learning to love the child you have rather than the child you imagined; a very inspirational movie.

And just being released now is a new movie, The Story of Luke.  I haven’t seen this one yet, but it is about an autistic adult seeking a job and a romantic relationship once the supportive members of his family are all gone and he is left on his own.

Please share any others you have seen, what they are about and what you thought of them…

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Unexpected Reaction and working through the challenges: Autism and the Theater

Yesterday we got free tickets to see a high school performance of Beauty and the Beast.  Considering that my kids saw a junior high performance a few years ago and sat in the front on the floor with other kids, away from me and grandma, I wasn’t expecting the experience we had.  Before it even began, my 7 year old son with aspergers started to panic and wanted to leave because it is a scary story.  I told him he saw it before and reminded him of the story, but he was still asking to leave.  I had him sit on my lap and when the lights went down, he was crying that he wanted to leave.  The combination of being dark (a new fear), loud music and scary parts was overwhelming to him.  I was pretty confident that he could get through it if I helped him, so I held him tightly on my lap and hid his eyes and covered his ears at the scary parts explaining what was happening and what was coming next as the play went along and he did make it through.  At the break I wondered if I would be able to get him to go back in, but he did and didn’t say anything about it.  He especially enjoyed the humorous battle scene at the end and was laughing and smiling.  I asked him if he enjoyed it and he said he did.  I am glad we stuck it out, but hope I would recognize a situation where his limits would be pushed too far.

The other side of the story is that his 5 year olds sister was with us too and since it was so long, she wanted the cuddling and attention her brother was getting too.  Thank goodness grandma came with us and she could give her some tender loving care.  She  still was leaning over seats toward me to give me kisses and get my attention too.  I have a lot of mommy guilt and worry about her possibly wanting/needing more of me that isn’t available because her brother needs so much of my attention.  I try to make sure she gets time too, but it is so hard when there is not another adult in the house.  Such is the life of a sibling of a special needs kid, especially one in a single parent family.  I know she will make it through and probably be better for it, but that doesn’t stop a mom from worrying.

On another note, I am very impressed that this high school is also giving an autism friendly performance of this show too.  They worked with the local autism society and other groups to modify the performance, they will keep the house lights on, lower the sound, have a room where kids can go play with aides during the show and other accommodations to make the show accessible.  I will definitely be watching for more theater opportunities like that since the dark and noise are becoming more and more problematic for us.

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Books for kids about Aspergers

It has only been recently (at 7 and a half) that my son has begun to notice that he is different from other kids.  He is noticing that he goes on breaks at school and other kids don’t and wants to know why.  The best answer to that has come from him, “to get my energy out.”  Though I don’t remember what my answer was, I am sure it was a more long winded form of the same idea.  Wondering if he is concerned about being different, I asked if he was interested in not going on breaks anymore and thankfully his reply was no.  He loves his breaks and really needs them and I’m glad he instinctively knows this.

We have talked about autism and aspergers in the past, but he hasn’t had a real depth of interest until now.  As a librarian, my first response to help him understand is to turn to books.  I got as many books as I could from the library and have been reading them to him.  I have been surprised how much he has enjoyed reading them and being able to see a little of himself in them.

Our favorite has been, Understanding Sam and Asperger Syndrome by Clarabelle van Niekerk (a special needs educator).  Of all the books, it is the one with the most developed story as it is a fiction picture book.  It really develops the main character as a fun, lovable kid with talents who also has some differences.  There is a lot of traits to talk about while reading the book and my son loved being able to see some of himself in Sam, the main character.  It delivers the message that “working together to understand Sam will make will make life easier for him and everyone else.”  It also ends with Sam being very successful and sharing his talent for music with his school.

Autistic Planet by Jennifer Elder (parent of an autistic child) was not my favorite at first because it is written in a kind of hypothetical style and I wasn’t sure if, since autistics can be quite literal, that my son would understand it.  He did, however, and enjoyed the book and it is his second favorite.  It is the story of an autistic girl who makes a clay planet and when asked by a classmate if it was the moon she replies, “This is the planet where I’m from.”  She then describes what things are like on her planet: things are always on time, people use rocking chairs, fixate on a task, play chess or music, have sensitivities to food and textures, and repeat words.  When her friends asks if it is real, she replies, ” It’s how I feel.”  It ends with a message of acceptance from her classmate.

Another that I really appreciated is, I am utterly unique : celebrating the strengths of children with asperger syndrome and high-functioning autism by Elaine Marie Larson (grandparent of an autistic child).  It is an alphabet book that goes through each letter declaring the many strengths of those on the spectrum.  I love the focus on the positive.  It is filled with lots of large words that required explanation to my son, but since he loves learning about words and we were discussing how each thing was the same or different from him, it was just one more thing to add to the discussion.  It is not one of my son’s favorites because it doesn’t have a storyline, but a very nice book to remind us of all the positive traits.

Amazingly… Alphie : Understanding and Accepting Different Ways of Being by Roz Espin (parent of an autistic child) is another book I wasn’t sure if my son would understand because of its allegorical style, but again, he did understand it and enjoyed it.  There are several computers that just do not work like the rest; they are different.  Most of the people in the book don’t understand these different computers.  In the end there is a human, Chris, who is also different, who is finally able to figure out what the different computers are good at and how to make them work.  In a letter to the readers at the end of the book, Chris talks about how he felt different growing up.  It describes how his brain was “wired” differently and that his brain  had a hard time understanding what is or isn’t socially appropriate, but is really good at other things.  It never specifically mentions aspergers, but just explains it as different ways of being.  This book could also be used to encourage acceptance of other disabilities as well as it talks about, as it subtitle says, “Understanding and Accepting Different Ways of Being.”

This is Asperger Syndrome by Elisa Gagnon (an autism specialist) describes a different trait of its main character on each page and ends each page with “This is Asperger Syndrome.”  My son didn’t really understand the concept of a sydrome, so we just said this is aspergers.  It puts all of the traits into a descriptive scenario, so kids can relate the way the act to specific situations.  Being in black and white, it is not as visually appealing as some of the other books, but it certainly provided lost of opportunity to discuss which traits were similar to my son and which were not since there is not only one way  that aspergers affects people; aspies are all affected differently.

What it is to be Me! An Asperger Kid Book by Angela Wine (parent of 2 autistic children) is a nicely balance book with positive traits and their corresponding difficulties described alternately.  For example on one page it talks about having “superhero” senses, but on the next page it talks about those same sounds can hurt or scare.  It is a short book that would be especially appropriate for younger children.  It ends with the message that what makes those with aspergers different also makes them “cool” and to have pride in being themselves.

A chapter book, Adam’s alternative sports day : an Asperger story by Jude Welton (child psychologist and parent of an autistic child) was a fun read.  Because it is a longer story, we didn’t stop along the way to talk about various traits, but they were definitely identifiable throughout the story.  The main character, Adam, who has aspergers, dreads the annual sports day at his school because he is not particularly athletic.  This year the principal changes sports day to an alternative sports day where the students participate in a variety of challenges such as hieroglyphs, math, riddles and puzzles.  Throughout the challenges, Adam’s strengths and weaknesses show.  Learning how to get along with others and how to loose and be a good sport are two of the messages throughout the book.  There are two different endings, but each are positive in its own way.  It was fun to watch my son try to solve the challenges along with the characters in the book even though they were a bit advanced for him and to see him be so excited when Adam succeeded.

It was harder to find books written by autistic people available through the libraries as they are mostly self published, but I did manage to get my hands on two: It’s Good To Be Different! by Michele Danae Stedman and My Name is Emily I am Ten and I have Aspergers Syndrome An Autobiography Typed By My Mom by Mary Restivo and Emily Margaret.

It’s Good To Be Different is a simple book that explains what life was like for a girl with aspergers as she was growing up.  She spoke late, read early, isn’t good at being social.  She talks honestly about some of the traits she has like flapping and a funny stare that people notice.  She shares her love for animals and her sister and mother who help her and ends with “It’s good to be different! Everybody is different in some way.  If I wasn’t different I wouldn’t be me!”

My Name is Emily I am Ten and I have Aspergers Syndrome An Autobiography Typed By My Mom is as she says “a little all over the place, but  you have to understand people with Asperger’s to know that’s how we talk.”  She talks about how she experiences emotions; she is never mad, but is often sad and shuts down.  She talks about things that are hard for her like noises, not having her things around her and paying attention.  She talks about her sister, her grandma, her aunt and a few of her friends who have all played special roles in her life.  She talks about things she likes and dislikes and things she has done.  There are also lots of pictures.  It is a great book to show kids with aspergers that there are other kids with similar challenges as theirs, but that they are also unique.  It is long, however, so not really readable in one sitting.  I hope I can use this book to encourage my son to write about himself someday.

We also have been reading several books about handling meltdowns since that has been an issue for us lately.

When My Autism Gets Too Big! A Relaxation Book for Children with Autism Spectrum Disorders by Kari Dunn Buron (an autism specialist) is a workbook that uses a five point scale to identify whether emotions are calm “1” or “way too big” “5”.  Since this is a scale that a lot of schools use, it can be familiar to kids.  Because it is a workbook, it gives the readers time to reflect on what they are good at, what makes them calm and what makes them upset.  It gives a few practical tips on what to do when emotions get too big like, squeezing your hands together, breathing deeply, thinking happy thoughts or going for a walk or to a safe place.  My son has been taught all these things, but we are still at the point where it is challenging to really get him to implement them before or after his emotions get high.  It is an important foundation to lay nonetheless.

The Chameleon Kid: Controlling Meltdown Before He Controls You by Elaine Marie Larson (grandparent of an autistic child) was confusing to me.  It has a meltdown monster that kids are encouraged to chase away.  It uses lots of idioms and explains them such as “save the day,” “true colors show,” and “have a cow.” Many of the idioms are ones I rarely hear, such as “cook his goose” “no dice” or “stay out of the pot.”  Any useful tips for actually chasing the meltdown away have to be inferred from the pictures and include simple things like listening to headphones, taking a walk, pushing hands together, playing with a favorite toy, writing or drawing.  It is unclear in many of the pictures what the kid is doing to help them chase the meltdown monster away.  There is a list at the end of the book with other ideas, but it is not a part of the story.  The refrain, ” Be A Chameleon Kid,” is also not explained in the story, but only in a note to readers at the beginning of the book.  It explains it as changing your mood to adapt to different situations as a chameleon changes colors.  I am not sure my son really understood what that meant.  So, while useful in teaching idioms,  I did not find it very useful in dealing with meltdowns.

The Red Beast: Controlling Anger in Children with Asperger’s Syndrome by K.I. Al-Ghani (mother of an autistic child and special education teacher) is the story of a boy who gets angry because he was hit by a ball on the playground.  His anger grows into a “Red Beast.”  The child looses control and is taken to a quiet place where he uses a stress ball to shrink the beast.  Once he is more calm, he is given choices of some other calming activities.  Once even more calm he is able to return to class and apologize to his friend for hitting him.  The friend congratulates him for taming the “Red Beast”  It was a nice story that my son enjoyed.  It was not critical of the child for loosing control and lists other strategies for parents at the end to help avoid meltdowns, use minimal language during meltdowns, have a safe place a child can to, replenish blood sugars, give physical jobs and other tools that may help a child calm.  While my son enjoyed the story, it is too hard for him to transfer what is read to him in a book to real life situations.  The book’s real value seems to be in validating to the child that it is ok that they have meltdowns and to remind parents of a variety of techniques to use; now if only I can remember them in the heat of the moment too…

If you have any other books you have read with your kid(s), please share them in the comments.

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Autism and Emotions – An Example and Autism Acceptance

As we were driving home late on Saturday from an evening full of fun activities, the 5 year old says to her brother with Aspergers: “Do you care about me?”  Eager to hear the response, I continue driving and am as quiet as a mouse.  I was just thrilled with where the conversation went from here.  I could not be more proud.

7 year old Aspie: Yes I do.  Sometimes you can be a pain in the butt and I wish I never had a sister, but other times I am very concerned about you, like when you kept falling when we were ice skating.  (After a few seconds pause.)  When I am upset my heart is the size of a walnut, but other times it is as big as a watermelon.

5 year old: Sometime I want to be like you since you are older and can do more things.

7 year old Aspie: You should love yourself the way you are.  My family and friends love me just the way I am.

This sounds like the full range of human emotions to me, including empathy.  It is also wonderful that he is getting the message that he is loved just the way he is!!!  All the work to make him feel loved and accepted and not defective are working…

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My son’s school had a dance on Friday night.  Since he has aspergers and doesn’t always do well with loud music, I wasn’t planning to bring him to such a stimulating event; however, he wanted to go, so we gave it a try.  We brought ear plugs just in case he needed them, but he never used them.
He found 3 of his friends and they spent the whole night running around and interacting!  Victory Number 1!
About half way through they were playing a game that had the potential for someone to get hurt, so I asked my son to stop.  After 2 requests, he did stop, but was very sad. By himself, he removed himself from the situation and sat down at a table in the hall. He spent some time alone and at first he did not want help, but after a little while he asked for my help. He sat on my lap and cried a little to get over the sadness, but then stopped and ran back to play with his friends for the rest of the night!  Victory number 2.  There was not yelling, hitting, kicking, throwing, just positive choices to calm himself!  For him to be able to do this in such a stimulating environment and after a few weeks of daily meltdowns at home and a few at school, this is a major victory!
I am so proud of him and just had to share!  This is one of the unexpected struggles of being a single parent; not having another adult who loves your child as much as you to share their accomplishments with.  Luckily I talk to my mom daily, so she gets to share it all.

We seem to be on the upswing from the daily tantrums.  I think the meltdowns were partially triggered by a growth spurt and reorganization of the brain that is commonly said to happen around birthdays and half birthdays, but he has also found motivation in wanting to earn some rewards.  He wanted to start using his chore and behavior chart again, so reminding him of this can now often motivate him to find another way calm himself instead of with meltdowns.


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Autism and Emotions

There is a lot of misunderstanding out there about autism and emotions.  When I did a google search on autism and emotions, the first thing that popped up was “Do people with autism experience emotions?”  Several of the articles talked about autistics being unable to recognize and identify emotions and to be unable to empathize with others.  The final group of articles focused on the inability to regulate emotions.

So what is the story with autism and emotions.  Well, I cannot think of any situation where an autistic person does not feel emotions, but regarding the other difficulties, it seems there is a large variance among people on the autism spectrum.  While some may have difficulties with recognizing emotions or having empathy, others may do okay in this area or in fact be hyper sensitive to emotions in other people.  All seem to have some degree of difficulty in regulating emotions, but to varying degrees.

Here is how it plays out in our house.  It is a dichotomy of extremes.  My son most definitely experiences emotions; in fact, he feels them extremely.  When he is angry, he is very angry.  When he is sad, he is very sad.  When he is disappointed, he is very disappointed.  And on the other side of the emotional spectrum, when he is happy, he is very happy and when he is excited he is very excited!  His grandmother enjoys watching him watch tv as he will often have a huge smile on his face or be jumping up and down when something exciting is happening.  He is very involved with his emotions.  He will also leave the room if the show gets scary because it is too scary.

He is definitely able to recognize and mostly identify the emotions of others.  In fact he is very sensitive to the emotions of others.  If someone even raises their voice he will describe them as “harsh.”  It upsets him when others are angry.  If I am having a bad parenting moment and get frustrated with him and yell, it will often shut him down and I will have to reassure him that I am not truly mad, just frustrated and that it will be ok.

He also has empathy; he will often feel sad if another person is sad.  He has put his hand around a friend, gone up to a kid at school who is sad and will cry during movies when someone is sad.  When the robot in Wall-E says good-bye and leaves his bug friend, he almost can’t finish watching the movie because he is crying and so sad.  He also gets very excited and will jump up and down when he knows someone is happy with something he has made or given them.  So for him, the problem is being able to regulate these extremes in emotions that he experiences.

Being unable to regulate his emotions is what leads him to meltdown as I talked about in the last post.  But while we work with him to teach him how to calm himself when he is experiencing negative emotions, I hope he never looses the ability to be unabashedly happy and excited.  For all weaknesses, there is another side that is a strength.

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