Saturday, May 30, 2009

One Mom's Look at Asperger's

One Mom's look at Asperger's

This was not written by me, but I felt I should pass it along to anyone who might identify with it or have comment on its contents. It was posted on a homeschool message board by a mom of a child on the Autism Spectrum. I thought this was a very well thought out, understandable explanation of what Asperger's Syndrome can be like.


Asperger's Syndrome is a neurological condition and can affect anything related to the nervous system including cognitive and sensory functions. Nobody knows what causes it yet, and it manifests somewhat differently from person to person. It is considered by some to be on the "autism spectrum", and by others to be a separate disorder that has many similarities to autism.

By definition, a person with Asperger's has an average to above average IQ (if it's lower, they get a different diagnosis). People with Asperger's Syndrome characteristically have deficits in social functioning, including odd and inappropriate behaviors, difficulty with non-verbal communication such as body language and facial expression, and can often have a hard time understanding non-literal language such as sarcasm, idioms and figures of speech.

They can also have difficulty understanding the ebb and flow of conversation, tending to "lecture" rather than converse. (One nick-name for the syndrome is "little professor syndrome" because they're very smart and tend to speak pedantically.) They usually have very narrow, focused interests, often in unusual things (sometimes referred to as "obsessions" or "passions", depending on one's attitude about the condition).

Often people with Asperger's also experience the world differently with their senses than most people around them (sensory integration disorder). Again, this differs from person to person, but an Aspie may have an aversion to (or conversely may crave) certain types or intensities of lights, colors, textures, touch, tastes, smells, sounds, and so forth, or may have difficulty sensing where their body is in space, making them fidgety and off balance. Many Aspies also have difficulties with changes in routine because they are already dealing with so much that a surprise can really throw them off their precarious mental balance.

Aspies also often have comorbid conditions such as anxiety, depression, seizures, tics, OCD, ODD, PTSD, ADHD and others that can be diagnosed and treated separately, but which often go undiagnosed because they are just attributed to the AS.

Behavior in an Aspie can be rather complicated to unsnarl, as sometimes "bad" behavior can be a reaction to a painful sensory stimulus, an overloaded nervous system, a "fight, flight, or freeze" response triggered by a social situation they perceive as threatening, or just developmentally delayed impulse control. Developmentally these kids can be all over the chart--it's not so much DELAYED development (though there usually are delays in some areas) as it is UNEVEN development

For example, a 12 yo boy might test out at a 22 yo level in some things and about a 5-7 yo level in others, and all of these can vary depending on whether he's hungry, tired, excited, calm, etc. It can be very confusing for the adults in the scenario when they're dealing with a 6 year old child who can multiply multi-digit numbers in his head and read at a high school level, but isn't yet potty-trained. We tend to think of skills developing more or less in a pattern so that if a child can do X, we should be able to also expect him to do Y, but with Aspies that all goes out the window and you just have to really get to know YOUR child's developmental pattern and roll with the punches.

And sometimes "bad behavior" is just plain old bad behavior too, and the proper response is discipline. But discipline isn't going to help if the problem is sensory. If you take a child who is in pain, say from a too-bright light (which you don't notice, because your nervous system is not oversensitive) and beat him for being in pain, it really only makes things worse, if you see what I mean, and will probably escalate the behavior. And if he is really developmentally much younger than he is in some area, such as impulse control, then it's not really fair to expect him to be able to perform at the same level as other kids his age, and no amount of punishment will speed up the development process, and it may in fact impede it.

Aspies often come across as either the "angel" or the "demon" behavior-wise. This is because different people react differently to being overwhelmed, and Aspies spend a LOT of time feeling overwhelmed. The two most typical reactions for ANYONE who is overwhelmed, not just Aspies, are to either withdraw, or to fight back. The withdrawers get labeled as "good" because they tend to just sit there and be quiet, whereas the fighters get labeled as "bad" because they tend to pitch humongous, out of control fits (aka "meltdowns"). But generally both behaviors are indicative of neurological overwhelm, and it's best to help your child find a happy medium where they are cheerfully engaged in what is going on.

Aspergers is sort of a buffet-style diagnosis, which is one reason it seems so different from person to person. Something I think many people don't realize is that since there's not an actual medical test for Asperger's Syndrome, the diagnosis is really more a way of categorizing people according to behavior than it is an indication that some particular, specific thing is anatomically different. There probably is a consistent anatomical thing (or things) going on, but research hasn't nailed it down yet. So it's a very subjective thing, not like, say Down's Syndrome or Fragile X where you can look at the chromosomes and say "yep, he's got it".

parents should keep in mind too when reading over things like this is that the intensity of the symptoms makes a big difference. A lot of "normal" kids are a little socially awkward or have unusual hobbies, most kids throw tantrums, and some are a little oversensitive to certain flavors or whatever. It's not usually considered a "disorder" unless these "normal" behaviors are taken way to the extreme--to the extent that they interfere with the "normal" functioning of a person. If it's causing serious issues in life, it may be a diagnosable disorder. If you can compensate fairly easily and work around it, it's probably just a personal variation on normal. Everyone is different, and something that we seem to be losing touch with in our current society is that THAT IS OK.

written by Amy Beatty, WTM forum

Thursday, May 28, 2009

Successful school meeting! We're getting somewhere!

Successful school testing meeting!

My husband and I attended a meeting at Ella's school on Tuesday morning with her teacher, her principal, and the special ed resource teacher. Our purpose was to assess Ella's strengths and weaknesses in the classroom and at home, and to specify what areas we feel should be further investigated with educational and psychological testing. I was very surprised at how thorough the meeting was! We see so much more of Ella's tantrums, stress, and lack of age appropriate behaviour at home, that her teacher rarely notices anything out of the ordinary in the classroom. She was very surprised at Ella's recent diagnosis of Asperger's. Ella's principal is an amazing woman. She got her BS in Special Ed, taught for almost 10 years, provided respite care before her kids were born, and has been a principal for a long time. Special ed is her passion. She knows her stuff. As we were going through the questionnaires about Ella's strengths and struggles, the principal would often stop and explain to Ella's teacher that these were things that were indicative of being on the spectrum. She was very gentle, and gave great examples.. it was a good lesson for me in how to educate rather than come off as irritated that you don't believe Ella has Asperger's.

I was most surprised that in her teacher's review of her in general, she said that Ella was a quiet and withdrawn child. No one who has ever met her in her LIFE would say that about Ella. This seems to follow what I have read about girls with Asperger's too, that they tend to hang back on the outskirts of discussion, etc. to pay attention to what others are doing. So this is a side of Ella we have never seen.

In the end, it was decided that Ella would under go what amounts to an educational "full body scan" between now and August. They want to test her IQ, her achievement, her social ability, they intend to give her the WISC, the WIAT, and another Autism Spectrum test as well. The special ed teacher named off several tests, and the principal suggested several more. It was so nice to see that they were so interested in Ella, and they had such nice things to say about her sweet nature, her willingness to follow directions, her willingness to ask for help, they were very very positive. We had homeschooled Ella up until January of this school year, and to be honest, had never thought we would put any of our children in public school. We were shown in several ways why this school is great for her, and have had our decision affirmed several times. It happens to be the year round elementary school where we are districted, and I don't think that was a coincidence either.

Ella will very likely qualify for speech/language help due to her literal/rigid thinking and pragmatics. This may also mean that she secondarily qualifies for OT at school. She will also be able to attend social groups, where I suspect she will fall into the high range of ability.. I am hoping that it makes her feel good about herself that she will be on the outgoing/very verbal end of the social spectrum. I feel like it will be good for the others in there to learn from Ella's realtive social savvy as well.

I would love to hear from other moms of children on the spectrum regarding school testing, IEPs, and what it is like as your child starts getting into adolescence and navigating the new social rules that go along with it. I am so dependent on socialization, and I want to help equip Ella as much as possible with friends who understand, so that she feels understood and validated. She so often cries that I do not understand her. And she's right. But I am learning and reading and researching as fast as I can.

Tuesday, May 26, 2009

Talk Back Tuesday

I want to get to know my readers better, and I want to9 try to balance the difficult and personal posts with some lighthearted ones!

If you were to invite five friends or celebrities (or a few of each) to a slumber party at your house tonight, who would you ask to come over and which movies would you rent?

Because they might be fun and might still be into the idea of slumber party, I would invite:
Jennifer Garner (celebrity and mom)
My friend Susan that I went to high school with (and was in choir with) who I am still close to
My friend Ginger in Nebraska because she is incredibly funny
Soliel Moon Frye (celebrity and mom)
My friend Julie who does not get out of her mountain town often enough and I miss her

I would want to rent:
13 going on 30
The Lake House
Pretty Woman
Coyote Ugly

How about you?

Thursday, May 14, 2009

Ella was Diagnosed with Aspergers Today

I am dead dog tired, but wanted to let you know that we got the results from her autism spectrum testing back. I feel more validated and relieved than upset, especially since my husband would probably also fall under that diagnosis.

Here is the summary of information from her psychologist, let me know if you have any questions for me. I am lucky to have formed these few complete thoughts.

We had an initial visit with her that lasted 90 minutes where she mostly talked to us together, but talked a little to Ella by herself and about a half hour to me by myself. Dr. H also spoke to Ella's 3rd grade teacher.

has an age appropriate vocabulary
her vocal tone, articulation, and cadence of speech seem normal
  Ella takes longer than usual to form her thoughts into words
  Ella has difficulty extracting the most relevant information to tell about an experience or story
  Ella has difficulty organizing a story into a beginning, middle, and end that makes sense
  Ella uses some emphatic and descriptive gesture to enrich the quality of her communication
Ella's facial expression is congruent with content of what she is saying, but her facial expression seems pretty basic (i.e. happy, sad) and lacks subtlety and variability many children her age might demonstrate.
In a test where she was asked to tell a story from a picture book, Ella had difficulty telling about what was happening, as opposed to labeling items in the pictures.

  Ella seems to understand most language
Given her mastery and use of language, she seems to struggle with the inferential components of receptive language (e.g: she mentioned that she used to have kittens. One night, she fed the kittens some pizza crusts. I asked her why she got rid of them, and she thought I was talking about getting rid of the pizza crusts, not why she got rid of the kittens)
  Ella has difficulty interpreting non-literal language (sarcasm), tending to take it literally
  Ella has difficulty processing multi-step instructions, needing them to be broken down into individual steps

  Ella reports rich, imaginative play with peers
In the ADOS adminstration, Ella struggled considerably with imaginative play. She appeared shy and inhibited, which was a sharp contrast to her almost overly-comfortable behaviour in the office setting (i.e: coming in and taking her shoes off, playing with her toes). She would follow my lead in play; but would not use her characters to enrich or build on the play. Her engagement appeared reluctant, which does not seem to be consistent with her interactional style in other ways.
  Ella reports make believe play in which she takes the role of a character
During the ADOS administration, Ella was bashful about acting out a scene, even after it was demonstrated to her by the examiner.

Social Interaction
Conversation tends to be on Ella's terms. She can talk at length about topics of interest to her and responds to questions and comments nicely; however she fails to follow up on conversational leads, (e.g: I have dogs too, and they do things that are really funny!"). At those times, Ella appears uncomfortable as though there is some recognition that she should say or do something; but does not know what.
  Ella has friends with whom she gets along well; but struggles to identify characteristics that make a friend a friend. She seemed to find this question stressful. She initially stated that children of similar age are friends, and then drifted into talking about birth dates. When encouraged to find other reasons, she noted that common interests made a friend a friend.
  Ella was able to talk about her emotional experiences (although she appeared to be somewhat uncomfortable and tentative in the interaction); however she struggled to consider how her bahaviour might affect others (e.g.: What do you think you do that might annoy other people?). She could not come up with an answer about herself, instead talking about what her younger sister does to annoy her mother.

Restricted Interests and Repetitive Behaviours
Used to walk on tip toe/toe walking
Unusually focused on dates and birthdates
Transitions were easier as a child,but around age 7, she started having more difficulty with change.. needs a lot of warnings, needs to review expectations, can fall apart if plans change (e.g.puts hands on head as she struggles to think about what else she might eat for lunch of all ingredients are not present for the meal she had planned to have)

Associated Features
Sensory sensitivity
Dislikes sticky hands/fingers
Tags in shirts
Food textures
Clothing Textures

Cognitive Style
Literal Thinker
Difficulties with sequencing and organizing
Detail oriented at the cost of the "whole"
Abstraction, both receptively and expressively

Diagnostic Impressions:
Provisional Diagnosis of Asperger's Disorder

  Ella is not a "perfect fit" for an Aspergers's diagnosis. She has some terrific social and communicative skills that are often not seen in children with Asperger's. That said, she has extraordinarily savvy parents who have likely helped her develop strategies to compensate effectively for some areas of weakness. Her deficits in the areas of social communication and flexibility are subtle, but present. It appears most likely that a diagnosis of Asperger's Disorder is appropriate for her; however given her complex developemental history, it would be valuable to view these results within the context of a more comprehensive psychoeducational evaluation to see if there are underlying features of her thinking style that might meaningfully contribute to the diagnostic picture. Barring another more comprehensive explanation for the difficulties outlined above, a diagnosis of Asperger's Disorder appears to be the best fit available.

Other possible diagnoses: Expressive and Receptive Language Disorders, Non Verbal Learning Disorder

Other tests that may be used: WISC IV (Wechsler Intelligence Scale for Children), WIAT II (Wechsler Individual Intelligence Test), DKEFS (Delis Kaplan Executive Functioning Scale), NEPSY (Neuropsychological Test)

Monday, May 11, 2009

Mother's Day, a success!

This past week, I told Ella and Maddie that for my traditional "Mother's Day Breakfast in Bed", I wanted french toast and bacon. I shopped for the ingredients, and even marked a simple recipe for their dad to help them with. He got up when they woke early to make my breakfast, and did most of the cooking while they kept telling him he was doing this or that wrong or not the way Mama does it :) I lay in bed playing on my iphone.

After breakfast in my bed, Maddie gave me the necklace she picked out from Claire's in the mall. Bless her, it's the matching necklace to some earrings from a collection I already have! How cute! She also made me a card at the donut shop the other day, so she gave that to me as well. Annelise gave me a handprint lily in a small pot with fingerprint bugs all over it! A sweet keepsake from her 3 yr old preschool class! Ella had made a large 11x17 sized card at school with a poem and a self portrait inside. Very cool, and very Ella, too.

After church, we had lunch, and I decided to do some flower planting. Maddie and Annelise had picked out some hydrangeas while we were grocery shopping the other day, and I had some gerbera daisies and some dahlias to plant too. My husband worked the big shovel and broke through a lot of tree roots and weeded out some poison ivy, and was generally a great resource for my newbie flower planting questions.

Instead of a nice dinner and dessert, we dropped the kids off at my friends house, got some drive thru food, and went to see Star Trek :) It was fantastic and brilliant and I can't wait to go see it again!

Saturday, May 9, 2009

a backhanded compliment

I had taken Ella and Maddie to the mall. Maddie wanted to buy a Mother's Day present for me, and Ella just wanted to come along, since she made me something at school. We had a fairly enjoyable trip, but at our last stop, Ella became very brooding and ungrateful, trying to manipulate me into buying additional items for her. I had already bought each of them earrings and a small item at another store during our shopping trip.Her attitude was poor as we left the mall and headed to the grocery store to get a pizza and rent a movie.

We were at the redbox rental area and the girls had problems picking one movie. There was a line forming behind us, so I told them we would be thinking about which to rent while we shopped. Ella was disappointed but okay with this. Maddie decided to whine and throw a small fit. I started walking to the frozen food section, and Ella noticed that Maddie was not with us. I asked her to go get Maddie.

Unfortunately, she drug Maddie to the frozen food section. By the time they got there, Ella was yelling that Maddie had spat on her several times in attempt to be let go. We made haste to the check out counter. I finished paying, and noticed that Ella had been kicking Maddie as she was continuing to spit on her, and gave them the news that as a consequence of their actions, they would clean out the van before dinner and there would be no movie rental. They started howling.

An older woman, likely in her late 70s or even 80s, started clapping and came over to us. She told me I was being a good mom. Then she said "The two of you need to stop it. You're a couple of brats"

Brats? Did she just say that out loud? To my children?

I grabbed my bags as she walked back to her place in line.

I said loudly, in her direction, as I walked past her line: "Do you really think it is acceptable to call someone's children brats?"

"Well they are! If they were..." she said

"SHUT UP!" I told her as I walked past.

She yelled something after me and I said shut up again, incensed. After dealing with the kids behaviour, I then had to deal with a meddlesome old biddy insulting my kids, too.

If I had more wits about me at the time, I ought to have calmly said that I didnt appreciate her modeling rude behaviour to my children. But even with what I did, I felt like I restrained myself.

What is the world coming to???


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