Hello...I'm New...AS Daughter

You should check out the Oasis Asperger’s message boards—there are quite a few people there who have daughters with AS. My daughter got her dx at 9-s-she was very verbal and hyper at 6 and unpredictable. she is now 13 and looking towards high school. School got to be a big concern starting in the 4th grade, as her difficulty is in writing, not the physcial part, but the mental perspective taking and organization. As of now, she does no writing longer than a paragraph, no homework except for math and she is in mainstream gifted classes. We have speech, social skills, she goes to a therapist and monitored by a developmental pediatrician, and she has been on paxil, which helped her anxiety and frustration.
because she is gifted, and very verbal and good looking, most people don’t think she has a disability—even when they work with her for a while. But in the conversational styles and in peer relationships, you can see massive problems. School is overwhelming and she is very sensitive to touch and smell and taste.
good luck

Dear ssssf,

Thank you for your reply. I will check out the message boards at Oasis. I have spent much time on their site, but have never been on the boards.

Like your daughter, my daughter also seems to lack a disability at first sight. She seems more of a bratty/hyper child than a disabled one…at first. She does have some strange interests that give away her disability if people would care to notice, but, alas, most people really do not care to notice as they have their own lives and kids, to handle! For example…the other day at a clothing store, my daughter became VERY interested in the security devices that were attached to the clothes. We spent quite a bit of time on the floor of the store investigating the devices and discussing how they work. Not very socially appropriate (crawling around on the floor in public), but a learning experience none the less. She does not seem to be interested in the same things as her peers, with the exception of animals…she is obsessed with animals. She likes sparkly things, like jewels, but not to wear…just to collect and handle. She is also very fond of rocks and nature.

She has a large vocabulary, but her words rarely come out in the proper order…I think she talks a lot like Yoda! She writes a lot of her letters and numbers backwards and gets the order of numbers like 20 mixed up…she writes 20 like this 02. She has a big problem with consonant blends. If the letter is in isolation…no problem, but when you put letters together she can’t seem to blend them very well.

Did your daughter seek a HUGE amount of attention from you when she was young?? Not hugging attention, although my girl loves to sit next to me, suck her thumb and rub my shirt between her thumb and fingers (only if it is a “rubby shirt”, though, has to have the right texture!). She is very insistant in directing all attention towards herself, she will resort to very annoying and negative behaviors to do this. She also becomes very violent when she is angered…usually by her sisters. She will scratch and bite…she turns wild.

Thanks again ssssf, for your reply and I would appreciate any other insight from anyone else.

My daughter did require a lot of attention as a child—but after we learned of the diagnosis, we put her on a low dose of paxil, got her into cognitive therapy, and have changed how we handle her behaviors. 4 years into it now, we don’t see the physically violent reactions—though she will do this when tormented at school and they won’t stop, and we see a minimal amount at home. I would consult about medication—it has helped the whole family to have a calmer kid.
I try not to confront her or limit her from her choice unless I need to—I will fix something she likes to eat and not insist on family fooe—but I will not compromise on using a seat belt. I also avoid with her or do lots of preplanning about anything out of the ordinary. I have used social stories informally—that has helped. She also has just grown up more—time can help.
my daughter does not have the learning issues, so she can show off her brillance in class and gets some good feedback, but overall school is miserable.

good luck

Thanks again ssssf,

My daughter finds school overwhelming because, as she says, “There’s too many kids, like being trapped in a zoo.” and “They make a lot of noise.” She has a couple of friends, mostly children that are unsophisticated in their play…running, chasing, swinging, she doesn’t want to meet other kids, she hates to play dolls, won’t touch them at all. She spent a summer at a daily summer camp and never made a single friend and she only knew a couple of kid’s names. Mostly she liked to play cards with the teacher until “too many kids would join us, then I would leave”. She hated being there … except for the field trips, she liked those.

I’m a psychologist who specializes in ASD and wanted to say hello- and welcome. I wish we had an ASD board on this site. Instead, you will typically see ASD pop up here and there when specific issues are raised. Anyway, I suggest you look into Steve Gustein’s work at Connectionscenter.com. He has great books on activities for kids with ASD that will help with social and emotional development. I find that social groups using his model are the most effective- but you can also use it at home. Also, look at Stanley Greenspan’s The Child with Special Needs. Greenspan shows you how to look at your child’s unique developmental profile to guide play and interaction so that your child will reach the next developmental stages. -Lots of pretend play, which your child will avoid otherwise (but is so important in development of abstract thinking, social problem solving, cognitive flexibility…). It’s good to also be on top of things with the school- Aspergers kids are often misunderstood (because they seem so deliberate in their behavior and can be viewed as bratty). It’s important to get her better regulated- she needs to learn strategies to monitor her own arousal state and calm down when necessary. OT should also be helpful on this regard, since sensory difficulties are often a major component in emotional regulation difficulties. The How is your Engine Running? Alert program is often helpful for this. Social Stories by Carol Gray are also quite effective by providing mental rehearsal of social cognition- the behavioral expectations in different scenarios. She also sounds like she’s having some sequencing difficulties (ie, left to right orientation). Talk to her reading specialist about strategies to help her with this. You might also explore potential benefits of interactive metronome therapy as this might help with attention, impulsivity, motor planning, and sequencing. There are many resources out there- hope this helps! Good luck.

Hi, My name is Teresa Sewell, I have a 10 yr. old son Hunter who has been diagnosed as ADD since age 5 he has been on every ADD medication imaginable currently he is on Adderall XR 30mg along with Paxil 10mg and Clonidine for sleep problems. Hunter has seen a neurologist in Birmingham and he has suggested Hunter may have Asperger’s instead of ADD or both. I have been reading the messages on the Autism Society for Alabama website several of the parents who post to these boards uses a dr. from Montgomery who is a neurologist who specializes in Aspergers and who has had amazing results. Hunter is currently seeing a child psychologist Dr. Helen Italiano and a child psychiatrist Dr. Donald Paoletti who are both with Grayson and Associates in Birmingham, I contacted Dr. Italiano because she specializes in hypnotherapy, when Hunter sees her he will not open up to her Hunter was previously seeing a child psychiatrist Dr. Gonzolo Gurmendi (he stopped taking our insurance so we had him recommend another dr.) Hunter would not open up to him either. I thought Dr. Italiano would probably try to hypnotize Hunter in order to get him to open up to her, he will not tell me or my husband or his grandparents if anything is bothering him, Hunter has also been caught lying a lot lately, Hunter has an IEP in place, he has trouble with handwriting he has to print everything and the printing is huge and is very very messy, at Hunter’s last IEP meeting which we taped it was suggested that he be evaluated by an Alpha Smart that was last June 4th, the evaluation never took place when school started this year I wrote his homeroom teacher a letter and asked if she remembered that Hunter was suppose to be evaluated for an Alpha Smart but she responded by saying that she thought a Alpha Smart would be more of a hinderance than a help. Hunter also is suppose to be seeing a behavior specialist for 30 minutes each day but the specialist has seen him once since Xmas holidays. Yesterday was a particularly bad day as far as behavior is concerned here are some of the things the teacher wrote on his behavior form that he did yesterday. 1. Passed Gas 2. Got in the floor beside his desk and rolled around 3. Tried to shock other students with static electricity from his shoes 4. Balanced books on his head during class 4. Laughed continuously and at inappropriate times 5. Put food in the floor in the lunchroom 6. Continued bad behavior even when isolated from group at lunch. I would like to know what types of tests I can expect this new doctor to run on Hunter in order to diagnose Asperger’s Syndrome. Hunter had a afebrile seizure when he was 3 years old and lost consciousness briefly on the way to the hospital he was admitted to the hospital by his pediatrician and a EEG and a MRI was run which came back as normal. Hunter also sees a OT once a week for 30 min for handwriting and sensory dysfunction issues. Do you know of any accommodations that Hunter will need added to his IEP if we get the diagnoses of Aspergers on Friday. Any help will be much appreciated. Thanks Teresa Sewell

Thanks for the advice! I will look into the things that you mentioned…your suggestions are much appreciated!

Wow, a lot going on here! First there are no set measures for diagnosing aspergers- a clinician might rely simply on an interview approach, use a specific rating form for aspergers, or might do a whole neuropsychological eval. Next- make sure you use a therapist experienced with aspergers. There should be little concern that he “won’t open up”. That might be a concern for a typical child- but aspergers kids just don’t open up well. Usually because they don’t understand this whole opening up business anyway. These kids don’t need classic talk therapy (nor hypnotherapy!)- they need guidance, support, and remediation. Some of that might involve talking- but it is often facilitated by the therapist. With support from a therapist who understands your child’s thought process and experience- your child will learn to “open up” and participate in a therapeutic process. Now educational needs… If his handwriting is awful, then he should get keyboarding lessons- eventually he may need to do all writing assignments on the computer. Look into alphasmart again. He needs a social skills group to address the social issues. He should be assessed for pragmatic language (nonverbal communication/ conversational) difficulties- if he has aspergers than he has poor pragmatics and needs language therapy for that. Obviously the IEP should specify the hours for the behavior specialist. He probably could use a behavior plan to get his behavior on track. Talk to his OT and find out about his sensory needs. He may need a daily “sensory diet” to help him modulate his arousal better. Read The Out of Synch Child for guidance regarding the sensory issues. Hope this helps. If you get an aspergers diagnosis then check out the OASIS website and guide. Good luck.

I suggest that when logs are sent home, some positive things are included. Every child needs to feel valued and no matter how many problems a child has, it’s important that some positive statements are included and that the child knows that they are being written.

It disturbs me to read a list of problems with nothing positive on it. I’m sure that a child who rolled around on the floor didn’t do so all day. Did the child sit quietly for five minutes? Did the child perform a task or respond to a question? Is that something that could be written?

If a teacher is required to write some of what the child did that was positive, it may help the teacher to develop more positive feelings for the child. Unfortunately some teachers are so bothered by the negative behaviors that they see nothing else. This does not help the child to want to develop more positive behaviors.

It’s funny. I have a cat who I adopted when her owner died. The cat was 12 years old and a biter. I realized that one reason that she bit was because she was frightened. (She’d also bite because she wanted her own way.) She’s 14 years old and has become much more lovable, partly because she’s been understood and treated with the love she’s needed.

I worked with autistic children. Sure, many behaviors were difficult to deal with. But every child had some qualities that are positive and that we can build on.

My daughter was untouchable except at bed time. She could not be understood by anybody until she got speech therapy. She couldn’t really play much w/ other kids because she didn’t understand the rules and expectations. She also had terrible tantrums because of bipolar disorder that wasn’t dxed for a long time.
She had very difficult time learning alphabet, numbers, colors. She was tested as “retarded” but obviously isn’t. She still is struggling to learn to read.

I am SO HAPPY you got her speech so soon. That helped Temple Grandin a lot and if you haven’t read LABELED AUTISTIC, i urge you to do so.

John,

Hi…Does your daughter have Bipolar and Asperger’s???

I think we got my daughter speech help so soon because we already had two children before her and we could tell she wasn’t developing speech the same as the older two…red flags went up and we got her the therapy. My husband works at the university and that gave me a place to start from.

My daughter will be 7 next month. She is very immature for her age…it is very noticeable now that she is getting older. She speaks well, but she is hard to understand because she doesn’t tell a story fluently…sequencing wise, and she doesn’t fill you in on what the story is about . If you were there when it happened, you can understand what she is refering to…but, if you are not familiar with what went on before-hand, you will have a lot of trouble understanding what she is talking about or refering to.