Happy Half Birthday, you have Aspergers

Happy Half Birthday.. You have Aspergers..

Ella had a terrible, horrible, no good, very bad day. At least between lunch and when we walked in the door after school.

Ella has a bully at school named Makayla. Generally, the bully just shoots Ella dirty looks. Yesterday there were 4 different instances of her shooting Ella dirty looks. To top it off, Ella accidentally hit Makayla on the head with her umbrella yesterday, and Makayla erupted at her for it. She walked out of school feeling like she was going to cry, and got in the van, very stressed and unprepared to deal with the chaos of 3 small children.

She had three separate meltdowns just on the way home. She wanted to talk about her day, but Maddie was interrupting, Annelise was singing to herself, and Teddy was laughing and making noises at Annelise. It was more than Ella could take. She was hitting the chair in front of her, the window, her leg, yelling at us that we couldn't be quiet, we wouldn't listen, we didn't care about her, and we didn't love her. She was hurting herself with the strength of hitting things, and telling Maddie to stop looking at her "in that way", and ran into the house and into her room when we got home, yelling "why does everyone hate me?" as she went.

I got the other kids settled doing other things, playing and watching a video I think, and went to talk to Ella. I asked her to tell me about her day (which I've recounted). After that, we talked about her meltdowns. I asked her if she realized that they were caused by bottled up stress and emotions she had not talked about. She told me that she wishes that she were not too afraid to talk to her teacher about how she feels about her bully glaring at her, and she also wishes that her teacher would used the OT's recommendations for allowing her to do small things to help alleviate stress in school, especially allowing her to take tests and do writing assignments in a quiet place outside the classroom. I told her I would talk to her teacher, but with 2 weeks left, she will probably just need to deal with things.

I also asked if she realized that other people are affected by her meltdowns. I gave her the mental picture of being a tornado coming into our car after school, whirling and then tossing cars and roofs and tractors and glass at us as she melted down. We were doing what we usually do, but it was more than she could handle because of the bad day she'd had. She laughed at the imagery, and agreed that we were all doing what we usually do. I also told her that Maddie had been asking questions about her. About why she can get over a fit and Ella can't. About why Ella has meltdowns at the store or in the car, and she doesn't. About why Ella won't eat a lot of foods and wears the same clothes and shoes all the time. And that she is starting to be embarrassed when Ella has a meltdown, but doesn't know why Ella isn't embarassed.

I mentioned to her that after her father has been away on business for half the week and comes home, that we have noticed that he does not handle the usual noise and ruckus of our house well, either. That he tends to retreat into our bedroom with the laptop to stay out of the chaos. Everyone is doing what we always do, but it is too much when he is not used to it or in the right emotional state to deal with it.

I asked her if she had noticed that I had been acting different when she had a meltdown, too. I asked her what I did when she had a meltdown about picking out clothes the other morning. She said "You didn't walk away, you didn't yell and tell me to hurry, and you helped me make choices". I told her that was right. I asked her how I reacted today in the car while she was freaking out, she said "You didn't yell in my face, you didn't say you would ground me, and you tried to make everyone be quiet in the car". I agreed. I asked if that was different than I had acted before, and she said yes.

I told her that I had been doing a lot of reading about how her brain works. That she inherited the way her brain works from her father. I had been pointing out to her recently that she has inherited different things about her body from different people. Her eyes are blue like Grandma's, she has freckles like me, and she processes things and reacts to things the way she does because her brain is more like her father's. She has inherited her father's same ways of thinking, reacting to stress and to loud noise, his coordination for things like putting on socks.. his love of predictability and how it makes him makes feel safe. For instance, I like the novelty of choosing where to eat after church, and he stresses out if we don't always go to the same place because it brings him comfort and stability. I told her it took some real hard thinking for me to understand why her father felt that way because it didn't make any sense to me at all. That the sameness would be boring and limiting, because that's how my brain thinks.

I told her that the books I had been reading had helped me understand how to help her work through her meltdown, that it would not help if I demanded that the meltdown stop, and that she was having a meltdown because of her perspective on the situation. I needed to see her perspective, not just mine.

I asked her if she remembered the test she recently took with Dr. H., and that that she and her father, and many other people, have brains that process the same way hers does. I mentioned to her that she has a friend with Dyslexia. Her friend's mom is learning more about how to teach her because there is a name for her reading difference and processing of words and numbers. I told Ella that she has processing and reacting difference called Aspergers Syndrome, and that about 1 in 150 kids have Aspergers Syndrome or another one of the Autism Spectrum disorders. That she is in good company. I said that I knew there were kids at her school that have Aspergers or Autism also.

She said she didn't have any questions about it when I asked her, but that she was glad that I could read about it. I told her that it was helping me be a better mom and a better wife since her father has it too.

It was a lot to take in. I'm not surprised that she didn't have any questions. But I had never seen her feel so misunderstood and rejected, and she seemed more aware than usual that she was different from people around her, so it seemed like a good time to have this discussion.


She gave me a piece of good news too:

Late last week, Makayla played a trick on her and Ella felt embarrassed when Makayla and her friend laughed at her for her reaction. Ella talked to her friend Abigail, and the bully and her friend got angry because Ella told Abigail what they did. Abigail went to them and told them that they were mean to trick Ella. She told Ella that she would stick by her all through school. Abigail and another girl named Heather have been Ella's school friends this year, and I thought it was sweet to hear that Abigail stood up for her and promised to be her friend and help protect her from bullies. She said that it made her feel safe that Abigail talked to the bullies without her asking, too.

I have found several children's books about Asperger's and Autism, and wanted to get one, but wanted to tell Ella about her diagnosis first. I will review the one I decide on soon.

Thanks for listening. I am so glad to have you supporting me whether by responding to my posts or just taking the time to read and think about us!

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.

Communication
Expressively:
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.

Receptively
  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

Socialization
Play:
  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)