“I lost a little control.”
This is what my son tells me when we discussed his most recent trip to the play therapist. Alexander absolutely loves going to see Miss Natasha - they get to play for an hour. Near the end of the session she always brings me into the room to discuss Alexander’s progress. Well it turns out he is doing really well but she did comment “but he got mad at me when I moved one of his characters and threw sand at me.” She wasn’t offended by it, she knows his desire to control every move these characters make on the sand table. She just kind of said it matter-of-factly. Alexander just kind of grimaced while hiding behind a pillow, he knew that was something he probably shouldn’t have done. Miss Natasha then went on to explain how she used that as a learning tool for Alexander saying “If I were your friend and you did that to me on the playground I probably wouldn’t like it much.” While we were driving home Alexander told me “I lost a little control.” Yes sweetie you absolutely did. The fact that you are now able to recognize that and then share it with me speaks volumes. You’ve come a long way in the six or so short weeks that you’ve been in play therapy. I am looking forward to how well you do in your social skills group next week!
Last week I was sent a link to a YouTube video published by an individual named Christschool - the video is titled “Autism Everyday is a ‘Doctored Film‘”. I don’t know much about the individual who produced the video but he seems to be fairly popular with the neurodiversity proponents. The video is long, 15 minutes, but I figured it was worth 15 minutes of my time if it countered the awful video produced by Autism Speaks entitled “Autism Everyday“. As I expected it was definitely worth that 15 minutes of time. Bravo Christschool for an excellent video.
A few days after I saw the video the topic came up on one of the autism message boards that I go to. This is a general parenting site that has a subsection for autism and while I read daily I usually only post a few times a week. I often-times find myself shaking my head at some of the discussions being had on this board. It is not uncommon for posters to come on and ask advice from other posters about how to implement their new EDTA chelation protocol or to find out how many B12 shots to give. The gluten-free/casein-free (GFCF) diet is also discussed regularly and one mother actually decided to stop an important medication for her child at the recommendation of another poster because the medication contained lactose. No call in to the doctor to determine the effects of stopping the medicine, just an “ok, this is an infraction, we’ll stop it.” I can only imagine the roller coaster lives that some of these children may lead.
So this video comes up as a topic of conversation and a good 95% of the posters railed the original poster for daring post something that speaks against Autism Speaks. Several mothers chimed in that they, too, have felt that death was the only option for their child at some point in their life. Then the wars went on to parents of “high functioning” children vs. parents of “low functioning” children. How dare a parent of a “high functioning” child post something like this - their child isn’t “low functioning”, they don’t know how hard life is. I never bothered to post on this thread but like an train wreck in slow motion I couldn’t keep myself from watching.
I have touched on the divide between the biomed crowd and the neurodiverse camp before. I am still relatively new to all this but have found myself completely on the neurodiverse side of things. No I don’t think there is a cure for autism. No I don’t think Autism Speaks speaks for my family. I am surprised that a lobbying organization the size of Autism Speaks has no autistic individuals on their board, no autistic individuals that speak at their meetings, basically no input at all from adult autistics. I have read many reasons as to why this may be happening but the consensus seems to be that the leaders and members of Autism Speaks don’t want to envision a future where their autistic children grow up to be autistic adults. If they don’t recognize that reality now then perhaps they won’t have to face it in the future.
Okay this post seems to have meandered a bit - just a braindump on my part that started with Christschool’s video. I wanted to close this post with a link to post made today by Kevin on his Left Brain/Right Brain blog. Kevin is a fantastic blogger and neurodiversity champion. Enjoy: On Media, neurodiversity, and science.
I have previously mentioned Alexander’s issues with rigidity - it is a common theme among children and adults on the autism spectrum. His play therapist has us gently challenging him when we feel the situation is right. As always Monday is occupational therapy day for him - his therapist is Ms. Sheila and she is wonderful! As they were going to go into the small room for the infinity walk (he doesn’t like me watching) he was insistent that she get two of the red cones to walk between. I started to suggest he take one red and one of another color but stopped myself; he hasn’t been the most willing participant in the infinity walk and now was not the time for me to challenge him. Sheila kind of looked at me quizically and I told her that we are supposed to gently challenge him to help with his rigidity issues.
Fast forward a few minutes - he completed the infinity walk and out he comes with a smile on his face. Sheila asked him to pick up the remainder of the cones from the obstacle course and partway through he said “what number was I on?” He has a major number obsession and I quickly told him that he didn’t need to count but Sheila being the wonderful person she is started to engage Alexander in conversation. “How was your day Alex? Pick up the cones.” Alex would start counting the cones in his hand and Sheila would ask him a question sometimes putting her hand gently under his chin to get his attention “Alex, I’m asking you a question.” She’d then ask a more specific question and he’d stop counting the cones and answer. She’d remind him to continue to pick up the cones while she kept asking him questions. He’d pause to answer and then quickly count the cones in his hands. They kept this back and forth up until he had picked up all the cones which he promptly counted.
The next activity was for him to stand on a bosu ball while they tossed a weighted ball back and forth. A few tosses in he said “what number are we on?” and she said “oh we aren’t counting, we’re just having fun.” He paused for a minute and said “Oh yeah, just fun, I don’t have to count.”
Not only does Sheila know her stuff with regards to OT, she knows her kids and can incorporate so many things into his therapy. She took our 30 second conversation about challenging him and immediately incorporated it, naturally, into his therapy. I am so thankful that we found her!
This is an article that I received from the Asperger’s Parenting group I belong to. I wanted to share it as I found it quite fitting for today, Mother’s Day. Happy Mother’s Day to all of the moms out there!
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MOMS AND UNPREDICTABILITY
By Julie Coulter
Years ago, I was driving our minivan west on Georgia Route 316 towards the
orthodontist’s office in Duluth with the kids in the back seats when I heard
my son, Drew, say, “Mom, I have a gum wrapper stuck up my nose.” Staying
focused on keeping the car on the road, I calmly said, “Can you try and blow
your nose and see if it will come out?” You see, Drew had braces on his
teeth at the time and couldn’t chew gum. Someone had left a gum wrapper in
the little cup holder in the very back of the van. Since he was very
observant and had noticed it and since he couldn’t chew gum, he said he just
wanted to “smell it.” So he had held the little rolled up wrapper up to his
nose and…
We didn’t learn how to deal with this in those weeks of childbirth classes
prior to Drew’s birth. We didn’t learn a lot of what we would need to raise
children. Maybe the fact that we missed the last childbirth class because
we were in the birthing room that day when Drew arrived ten days early
should have been a clue that life was about to lose predictability. We
certainly didn’t learn about life with a child on the autism spectrum.
During the last year, Dan and I have had the wonderful opportunity of
meeting families who live everyday with children and young adults on the
autism spectrum, while producing our videos for the siblings of those on the
autism spectrum and with Asperger Syndrome. In most of the interviews, Dan
ran the camera and I was the interviewer, talking to the parents and
children who have family members on the autism spectrum. Many times, I
found myself fighting back tears in listening to the mothers tell about how
they have learned to support their children, work with school teachers and
officials, teach themselves how to parent a child with special needs, and
cope with a life that came as a series of surprises. I listened to their
stories of hard-earned achievement and triumph as their children learned new
things and made steps forward.
One thing is predictable in the world of the autism community: watching our
unpredictable children succeed in their attempts to learn to deal with
unpredictable daily living makes us very proud.
Oh, yeah, about the gum wrapper. You will be relieved to know that our 23
year old son is not walking around with a gum wrapper up his nose. My
advice doesn’t always work, but that day, it did. Drew blew out the
wrapper. Some days, he and I handle the unpredictable very well. Some
days, we struggle.
Doing these interviews reminded me what a tremendous resource mothers can be
for each other. I am so very thankful for the chance to learn from others
how they handle their unpredictable days. When we need support or advice,
it helps to remind ourselves that we can turn to family, friends,
professionals, and especially, to others like ourselves.
We are not alone.
Happy Mother’s Day!
ABOUT THE AUTHOR - Julie Coulter is the co-producer of the Intricate Minds
series of videos that help classmates understand and accept students who
have Asperger Syndrome and autism. You can find more articles at her website
at www.coultervideo.com.
Copyright 2007 Julie Coulter All Rights Reserved. Used by Permission.
This morning while getting ready for school Alexander tells me “Nick is my friend but sometimes he tells me he’s not and I tell him he just forgot I was his friend.” Hearing that made me sad. Alexander didn’t have a sad look on his face and made the statement matter-of-factly but for some reason it made me sad. Alexander appears to have a desire to have friends but just doesn’t understand the give and take that a friendship requires. Alexander is very rigid and dictative in his play; he is my little Steven Spielberg; he directs all of his play interactions either with friends or family. If someone steps out-of-line, that is does something that is not on that script in his head, he will quickly steer them straight. If we challenge him, as the play therapist has asked us to do, he often-times just goes off and plays by himself.
I have done a lot of reading about Asperger’s Syndrome these past few weeks and the rigidity is a very common-theme among people with Asperger’s Syndrome. Here are some comments I’ve found with regards to rigidity and Asperger’s Syndrome:
From the article How Might AS Appear to a Parent?
Negative behavioral outbursts are most frequently related to frustration, being thwarted, or difficulties in compliance when a particularly rigid response pattern has been challenged or interrupted. Oppositional behavior is sometimes found when areas of rigidity are challenged.
This was under the section entitled ‘Behavior Problems’; most of Alexander’s behavioral issues stem from his rigidity and us challenging it. I have mentioned previously that he is a creature of routine. If his routine is disrupted without warning we never know what kind of reaction we’ll get. More often than not it is an oppositional type of a behavior - from defiance to a meltdown. I used to look at it from the point of view that he was doing this to push my buttons but now that I understand the reasons behind this behavior I look at these times as a time to learn from Alexander and help him help himself get through these stages. A recent example: earlier this week my husband took Alexander to school but had to stop to get gas in the morning. Alexander had a mild-meltdown. He knows the school gates open at a specific time and he was concerned that he would be ‘late’ even though school didn’t actually start until 20 minutes after the gates open. My husband reassured Alexander that he would be there in plenty of time but it did nothing to calm him down. Guess what? They arrived at the school before the gates opened and Alexander had to wait in the car. It was necessary to interrupt his routine as the car needed gas and even though Alexander had a meltdown he was able to see that yes daddy was right and they were at school in plenty of time.
Here is another quote that describes Alexander quite well. This is from the article: The Six Characteristics of Asperger’s Syndrome
The rigidity also makes it difficult for an Asperger child to engage in imaginative play. His interest in play materials, themes, and choices will be narrow, and he will attempt to control the play situation.
This pretty much sums up what I discussed earlier in this entry. He does have an imagination but it is very scripted. When I summed up his most recent play therapy session I described how the therapist said Alexander had problems giving up control and allowing her to take her turn with his carefully placed toys. She will be working with him on this rigidity and hopefully in time he will be more receptive to the gentle challenges we are supposed to be giving him.
Today was our family meeting with the play therapist - the four of us get together and talk about the last few weeks and then make a plan to go forward. Alexander pretty much hid in the tent in the corner and played by himself. The therapist reiterated the fact that she feels very strongly that it is Asperger’s Syndrome we are dealing with and not anxiety. She said yes she has anxiety but she doesn’t see the generalized anxiety or specific phobias that she sees in children who don’t have AS but have anxiety. She said so much of what she sees with Alexander is classic among children with AS and is happy that we pursued it past the original diagnosis.
She discussed how she has been implementing play therapy with him and has said that from here on out she is not going to be addressing his anxiety because the type of anxieties he has aren’t benefited through play therapy - they are part of the bigger picture of AS. She said she will be working with him on his rigidity as well as social communication. She said she can only do so much social modeling one on one so agreed that the social skills group will be very beneficial for him. She described some of their play sessions and that they take turns and she can just see Alexander completely tense up when she tries to move one of the figurines (they play with figurines in sand and tell stories). She says he often-times has difficulty with the story-telling part and spends more time putting the figures in the precise way. When it is her turn and she moves one it aggravates him. He also let her know that he is afraid of shadows and black spaces as well as noises. I knew about the noises but I didn’t know about the shadows - knowing will help me work through these fears.
One good thing is that he is receptive to sitting down one-on-one with her unlike our group sessions. She figured that there is just too much stimulation when we are all in the room so that is why he sits in the tent. She recommended we get a tent for the house (we had one but it didn’t last that long) and to let Ava know that when he is in the tent it is his alone time (instead of him having to go into his room). So we will continue with play therapy but she is really going to challenge his rigidity. We have been trying and he is absolutely against it. While pretending today I didn’t follow the script in his head and I tried to keep adding my own input and he was not having it - he quit playing with me. Hopefully in time he will be more receptive to cooperative and reciprocal play. I’ve figured out why he plays so well with Ava - she does whatever he says or does. He has a perfect play partner in her.
“I love being alone.”
This is what my son told me as we were walking into the house after school today. When we get home from school we eat lunch, Ava usually naps, and Alexander goes to ‘quiet time.’ Quiet time is self-imposed, he immediately goes to his playroom after lunch to do one of many things - read, color, play with his toys, do a puzzle, etc. If Ava doesn’t nap and wants to play with him he gets irritated. If it is a therapy day and his quiet time is delayed by several hours he gets irritated. Heaven help us if it is a long day and he doesn’t get any quiet time at all. This is part of his routine that he will not change, evidently it is because he loves being alone.
When speaking to the psychiatrist about this she said it is very common among children with Asperger’s Syndrome. For whatever reason the child just needs to get away. After Alexander’s comment today I decided to poke around the good ole www and see what I could find on the subject; especially in light of the VA Tech shooter being described as a loner with autistic or Asperger-like tendencies (which no one professional can agree on.)
From aspergia.com:
Nevertheless, throughout history, those who were born with a strong Aspergian persona, mostly knew that something was different. The sound of the ocean would calm them down, and they needed a great deal of solitude.
One of Alexander’s CDs - Indigo Ocean Dreams - is completely ocean-themed and he absolutely loves it. It helps calm him down when he’s made and relax him when he’s irritated. He will also listen to it just for the sake of listening to it - it has been a tremendous help in assisting Alexander in identifying his moods and how to get back to a calm state.
Tony Attwood describes Asperger’s Syndrome on the Canadian Parents site and included this description:
The person may actively seek and enjoy solitude.
I can completely relate to my son’s desire for solitude as I am the same way. With Ava napping and Alexander in his self-imposed quiet time I also get to benefit from some quiet time of my own. I use this time for myself - I avoid chores, laundry, cleaning, etc during this time and instead do something I enjoy. Sometimes I’m on my laptop, sometimes I’m reading, and other times I’m watching a movie. I see a lot of myself in Alexander - evidently the apple doesn’t fall too far from the tree.
I first heard the term dysgraphia a few months ago when my mother mentioned it to me. She is a public school educator and somewhere during her day she heard about dysgraphia and immediately thought of my son. I looked a little bit at it and thought ‘maybe, maybe-not’ and filed it away for future reference. Every now and then it would come up and I’d read more about it and think again ‘maybe, maybe-not’. After a report from Alexander’s teacher today I’m thinking ‘well, maybe.’ As I’ve mentioned previously he is learning above grade level in all subjects except for writing. His 4th quarter progress report came home and in the writing section it says this “When writing, Alex usually writes with lower case letters and ends his sentences with a period. However, the wording of his sentences often does not make sense. Please help Alex focus on what he wants to say and then follow through with the correct sequence of words.” Hmm…definitely food for thought.
So what, exactly, is dysgraphia? Dysgraphia is officially a learning disability that affects a person’s writing abilities. It can manifest in many ways including (but not limited to) trouble putting thoughts on paper, poor handwriting, and problems with spelling. The National Center for Learning Disabilities has listed the following as warning signs for dysgraphia:
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Tight, awkward pencil grip and body position
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Illegible handwriting
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Avoiding writing or drawing tasks
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Tiring quickly while writing
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Saying words out loud while writing
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Unfinished or omitted words in sentences
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Difficulty organizing thoughts on paper
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Difficulty with syntax structure and grammar
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Large gap between written ideas and understanding demonstrated through speech.
So you can see while I am still only in the ‘maybe’ stage - its hard to measure some of these concepts in a kindergartener. However as his writing is progressing we are seeing some of these issues manifest. The ones that pertain to Alexander are pencil grip/posture, avoiding writing/drawing tasks, tiring quickly while writing, saying words out loud while writing, unfinished or omitted words in sentences, and large gap between written ideas and understanding demonstrated through speech. So right now its hard to determine what would be considered age-appropriate and what would be considered a deficiency.
From the research I’ve done on dysgraphia it looks like an occupational therapist is a good place to start with regards to diagnosing and treating dysgraphia. I have put a call in to Alexander’s OT to see if she has any experience with it - I figure we’re already seeing her we might as well get her take on the matter if she has knowledge on the subject. Evidently there are several tests that can aid a professional in determining whether a child has dysgraphia including the Slingerland Screening Tests for Identifying Children with Specific Language Disability and the Test of Early Written Language .
So how does dysgraphia relate to Asperger’s Syndrome? Dysgraphia is one of the conditions that is seen at an increased rate among children with Asperger’s Syndrome. Basically its a not-so-uncommon comorbidity. Is it a comorbidity for Alexander? Time will only tell.
Yesterday I mentioned to Alexander’s play therapist that the psychiatrist has diagnosed Alexander with Asperger’s Syndrome contrary to the psychologist’s findings. The first thing the therapist said was “I agree.” She is a licensed clinical social worker so unable to make a diagnosis but she works with many HFA (high-functioning autism) and AS (Asperger’s Syndrome) kiddos so is familiar with how they present, clinically. She said she was surprised that the psychologist said that it was just anxiety and feels that the psychiatrist’s diagnosis is correct. I told her that the psychiatrist looked at all of Alexander’s quirks and that it ended up being like “a neat little package called Asperger’s Syndrome.”
In reading over the past week I have learned how Alexander has many classic AS traits that aren’t addressed in the DSM-IV. In the OASIS Guide To Asperger’s Syndrome they have a section called Suggested Solutions for Common AS-Related School Problems and some little things stood out. One section discussed the child having difficulty maintaining a comfortable posture at his desk and different ways to address it. During my son’s occupational therapy evaluation it was determined that he has problems with postural praxis as well as low muscle tone in his upper body leading to problems with fidgeting to get comfortable while sitting at a desk. This isn’t a part of the DSM-IV criteria for Asperger’s Syndrome but evidently it is something common among many children with Asperger’s Syndrome.
Other issues that aren’t classified as diagnostic criteria but when looked at as part of a whole child view could be part of Asperger’s Syndrome are handwriting issues including dysgraphia. At 5 it is hard to determine whether or not Alexander has dysgraphia but he certainly has some of the symptoms - as he gets older and his ability to write his thoughts improves we’ll know better whether dysgraphia is an issue. At school he is learning above grade level in all academic categories except for handwriting - he is considered ‘at grade level’ for handwriting but we have been told we really need to work on his fine motor skills and his writing techniques.
Sensory processing disorder is common for all children on the spectrum, not just those with autism. My son is no exception in this case. Many times children with AS present with sensory defensiveness - they are over-sensitive to certain types of sensory input including sound, touch, taste, smell, and sight. My son is sensitive to all but smell. The bright sunlight hurts his eyes; he is not a touch-feely kid and will wipe off kisses or other light touches as he can feel the sensation of the touch linger; he has a very sensitive sense of taste and thus has problems with food; he does not like loud sounds - especially sudden loud sounds. It is not unusual for a sudden loud sound to make him mad - where it scares my daughter it just makes my son mad.
Another part of Alexander that helps create the neat little package is his coordination/motor-planning issues; sometimes called dyspraxia or developmental coordination disorder. During Alexander’s occupational therapy evaluation the therapist noticed motor-planning issues on his part and is working on them with him through therapy. He has speech articulation issues that will probably be addressed through the school district next year - this could be problems with his oral motor-planning - getting his mouth to form the correct shape to make the proper sounds.
I could go on and on about Alexander’s quirks that fit into the profile of a child with Asperger’s Syndrome but I won’t. I’m definitely not focusing on the negative - these little things make Alexander who he is - my son, my oldest, and my sunshine. I just thought that the neat little package comment really summed it up - all of these varying issues come together to form one neat little package and that package is called Asperger’s Syndrome.
The CDC and the Interdisciplinary Council on Developmental and Learning Disorders has released new guidelines for identifying children at risk for Autism Spectrum Disorders and other developmental delays. From the press release dated today, 4/23/07:
Leading experts on child development today presented a new framework for identifying children at risk of Autism Spectrum Disorders (ASD) and other developmental challenges, saying that current guidelines fail to identify many children who need and would benefit from early intervention.
The framework is contained in a report by a special working group formed by the Centers for Disease Control (CDC) and the Interdisciplinary Council on Developmental Learning Disorders (ICDL), co-chaired by Dr. José Cordero, former Director of the CDC’s National Center on Birth Defects and Developmental Disabilities and currently Dean of the School of Public Health of the University of Puerto Rico, and Dr. Stanley Greenspan, chair of the ICDL.
We believe this framework improves our ability to identify infants, young children, and families at risk and to organize truly comprehensive, developmentally-based intervention efforts.
The framework presents newly formulated indicators to identify at-risk children in the first and second years of life, components for a comprehensive evaluation of infants and children determined to be at risk, and essential elements of a successful early intervention program for ASD and other developmental disorders.
The authors say the new rubric casts a wider net than current common practice in an effort to identify all children at risk of developmental disabilities.
“Children identified with developmental or behavioral disabilities earlier have a better chance of reaching their full potential,” said Dr. Cordero. “We believe this framework improves our ability to identify infants, young children, and families at risk and to organize truly comprehensive, developmentally-based intervention efforts.”
The CDC-ICDL framework is based on current understanding of healthy developmental patterns and is designed to detect all possible deviations from those patterns. It uses risk indicators designed to detect a lack of mastery of age-expected emotional, social, and cognitive milestones during a child’s first 2 years of life.
The entire press release can be viewed here: New Guidelines Promise Earlier Identification of Autism - CDC/ICDL Working Group Releases New Report during Autism Awareness Month and the report can be viewed on the ICDL website: CDC/ICDL Collaboration Report On A Framework for Early Identification and Preventive Intervention of Emotional and Developmental Challenges
