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Does your child have AS, if so could you help me....

2angelsinheaven

Loves making dreams come true!
Joined
Jun 10, 2003
I have two little ones living with us right now, the oldest who is 3 (will be 4 on Monday) is showing some signs I think are similar to AS. If you have a child with AS or know of AS would you read my post and see what you think. I know there is no replacement for medical advice but we are waiting on an evaluation and my mind is nagging me. :confused:

Here are some of the things she does that make me go 'hum'....

1.) Hard time with transitions, will throw a tantrum when changing for one thing to the next
2.) No sense of focus, her attention span last literally a few seconds it seems.
3.) Paces a lot, moves around for no reason other than to be active. She will tip toe around the room in a fast paced mood.
4.) Episodes of staring into space very often
5.) Very hard time waking up and going to sleep. What I mean is even if I let her sleep for a long time she almost panics when I try to wake her up will cry, flop around, etc., She also does not go to sleep till 11 or so at night even when we lay down at 7:30-8pm.
6.) Poor eater, she rips up the food but will not eat unless someone feeds her
7.) She was Dx'd with Balance issues
8.) When asked questions she repeats the question or ignores it
9.) Rips up anything paper and sometimes will chew it or keep it in her mouth
10.) Freaks when you put clothes on her, over her head, etc. Falls over when trying to dress herself (she cannot do this yet).
11.) Pees the bed when she is awake, otherwise is potty trained, but will lay there and pee.
12.) Terrible separation anxiety
13.) Need to always touch or feel things
14.) Eating non edible items
14.) Always doubting herself, cowering even with encouragement

Otherwise she is fine, talks about the 3yr old level can repeat any word you say, but she does not yet talk in full sentences. She cannot focus to tell you what a letter is or number (DR. said this was related to the balance issue, that her mind cannot create the midline causing it to look blurred). She is very picky though and will not share becomes panicked if something is taken away. Is sensitive to sounds, etc.

I am at a loss, I feel like I should know because I worked in a school for children with Downs, CP, Autism for 4 years but I'm stumped. She just isn't doing typical 3-4yr old things in my mind. Her sister who is just 3 is above Madison is all areas. I'm worried about her, and it seems to be getting worse. I've worked with children since 1994 and have never seen these behaviors except in children I've worked with at the school. But they were nonverbal, etc., and she is verbal. Help!

Thanks in advance for any answers.
 
AS children can be very verbal, my ds is very verbal when he feels comfortable. But can be quiet in group settings, like school. Also, AS kids range in intelligence just like other kids, my ds is very intelligent.
Symptoms vary, as does the degree of AS, one AS child can be quite different than the next. I believe my child's AS is very mild. Since I only have experience with him, it is hard for me to say if everything you listed is an AS symptom, so I will comment ONLY on the things I recognize. I hope others can help you on the others!
1) Transitions can be a big problem with AS
2) Focus: often have difficulty with focus, but can hyper-focus on areas they are interested in. For us nuclear power plants (+radioactivity) is one area of fascination. Also can hyper-focus on tv and video games.
3)Pacing, all I can say here is that alot of AS kids also are dx with ADHD
5)Sleeping, my ds has trouble sleeping, never has slept as much as other children. He usually wakes on his own, before anyone else. On those rare occasions when I wake him, it is extemely difficult to do, and he is in a very bad mood.
6) Eating, light eaters run in my family, my son insisted on feeding himself early on, and once full he would fling what was left of his food.
7) Balance, yes (as per your other post)
13) Need to touch things, my son used to touch the walls at school (which his teacher didn't like) when he was walking through the halls. I thought it might be balance related but don't know.
15)Doubting, cowering: my ds, at 11, will hide behind us when someone speaks to him and he is uncomfortable. He looks like a toddler who is scared. Don't know if that is similar to what you are saying.

For us, there is a lot of difference in my ds at age 4 and now at age 11. Much calmer and less visible problems, but more problems with schoolwork. It took me a long time to find out what was really going on with my ds, just got the official dx about 2 weeks ago!
 
Thanks for replying... am going to specifically ask about AS when we talk with the lady next week.
 
were the some of the same things that made us go hmmm:)

and her balance issues may be related to visual perception/processing difficulties...which CAN be a part of ASD. Is the lady you're speaking with next week an OT, Speech Pathologist, Paediatric Psychologist, or a paediatrician? Print out the list that you provided us, and take it with you...it has an amazing amount of information:)

Our guys are very verbal, and the echolalia - the repeating every word- was the biggest help in the world for us...

Let us know how you make out...we're here to "listen"!!:):)

:sunny:
 
I agree with the others that you have made a very good list of concerns/observations.
AS is a syndrome, which in medical terms just means a bunch of symptoms/observations that tend to occur together. For example (and I'm just making up the numbers here), there might be 20 symptoms that are known to be present in AS. If someone exibits any 10 of those symptoms, they would be considered to have AS. The same symptoms might be part of a number of different syndromes, so sometimes people with very similar behaviors won't have the same diagnosis. Getting a diagnosis is a lot like putting a puzzle together when you don't know what the final picture will look like. The more "pieces" you can give the professionals to work with, the more likely they are to find a diagnosis. But sometimes, even with good pieces, the puzzle can't be solved - maybe there just are not enough pieces or there are pieces of more than one puzzle. That's when you end up without a diagnosis or with a "catch-all" one like Developmental Delay.
 
Your list of observations sounds very similar to my 3 and 1/2 year old daughter. We are also going through the eval process for AS. I read your post about balance issues. My dd has chiari, so that clouds our picture a bit. Please keep us updated about your progress with the eval! :)
 
Several of the observations you list sure sound like AS. However, as with many kids 'on the spectrum', it sounds like she might also be ADHD, and/or have Sensory Integration Disorder.

Good luck. We had doctors tell us that my son was 'too young' to be diagnosed with AS at 8 (our doctor is out on maternity leave and we saw her colleague). It's good that the girls are with you, as you obviously have a handle on this! The earlier diagnosis will pave the way for services and make it easier on her when she begins school.

Suzanne
 


My son is now 12 and has had an AS diagnosis since he was six.
Yes a lot of things you've mentioned do crop up in AS dx.
However keep an open mind for now.
One thing that caught my eye was your comments about words. My son had a huge vocabulary of words however there was some block at putting them into sentances. Eventually his adanoids were removed and within a few days he was structuring sentences-however I was never fully convinced-especially after the AS dx which came later-whether the surgery helped or if he'd just had a developmental leap at that time.
 
When you say AS do you mean autism or angelman syndrome?
 
Originally posted by alohacousin
When you say AS do you mean autism or angelman syndrome?

In the context of *this* thread my understanding is that people are using AS to mean Aspergers Syndrome (which is classed as ASD or Autistic Spectrum Disorder) judging by the references used . Angelman syndrome is much rarer than Aspergers and has very different symptoms both physical and mental.
 
My son was diagnosed Autistic when he was 2 1/2 years old. He displayed many of the same symptoms as your child. I know how scary it is to wait for evaluations and diagnosis - hang in there. My son just turned 6 and was re-evaluated and re-classified as having Aspergers (still an Autism Spectrum Disorder - ASD - but a milder form of autism). Here are a few websites that may be helpful to you:

Talk Autism Now www.talkautism.com

Asperger Syndrome Coalition of the United States www.asperger.org

Autism Society of America www.autism-society.org

New Jersey Center for Outreach and Services of the Autism Community (COSAC) www.njcosac.org

On-line Asperger's Syndrome Information and Support (OASIS) www.udel.edu/bkirby/asperger

Cure Autism Now www.canfoundation.org

National Alliance for Autism Research www.naar.org

It takes a special person to be the parent of a special needs child. God only gives the special angels to people who can handle them.
 
Hi 2AngelsinHeaven, wow you are observant, that is great when dealing with medical professionals. Your little one sounds like my son, especially the pacing. Stick around these boards there are a lot of us parents with children on the spectrum and I have found them so helpful and supportive. The good news is there is a lot of help out there now. Take care and keep us informed.
 
Our 4 year old daughter has been "preliminarily" diagnosed with Aspergers... major transition problems, sensory issues, etc. We are having all the tests and evaluations done now to get to a formal diagnosis.

She has been to WDW several times (before we even knew what AS was - which was only last January) and does surprisingly well, and we have heard that they are very accomodating about a GFCF diet (which we are trying). So, WDW is an even more appealing vacation place for us.

Has anyone obtained a Guest Assistance Pass for a child with AS or that is on the Autistic Spectrum? I have read that autism qualifies a child for one of these passes, which basically acts as a Fastpass to the rides. I am just curious how this has worked for people and what is required in terms of documentation of the condition. My primary concern with doing such a thing is getting nasty looks from people in line as my daughter is not obviously disabled (most of the time).
 
Regarding the GAC for ASD. We went to WDW last May and obtained the GAC - what a blessing!!! The longest wait we had for a ride was 10 minutes. We never abused the pass - limited our use to once per day, per ride.

I brought with me to Guest Services a copy of my son's evaluation (stating his diagnosis), a note from his Pediatrician, and a copy of his IEP from school. You don't need to bring all of the above - but it gives Guest services more than enough proof. You must also bring your child with you to Guest Services to get the GAC, even though all disabilities are not visible to the eye.

As for people giving you the evil eye - just ignore them. If someone feels brave to say something, calmly explain the situation (if you are comfortable doing this - it never hurts to educate the public) and if they still have a problem - direct them to the nearest CM or ask them if they would like to have a developmentally delayed child.

You could also tell them:

- your great uncle Walt left you the pass in his will

- not all disabilities are physical

- smile and walk away

- mind their own business

- tell them "tis good to be the queen"

Just remember - you do not know these people and you will most likely never see them again.

BTW, most other amusement parks offer a GAC. For example, Great Adventure, Hershey Park and Knobels.

Enjoy your vacation!:wave2:
 
Originally posted by Hieatt
My primary concern with doing such a thing is getting nasty looks from people in line as my daughter is not obviously disabled (most of the time).

This might sound harsh but if a few ignorent people give you nasty looks-ignore them-THEY are the ones with the problem. Your daughter if she is ASD is very unlikely to notice the nasty looks and you're an adult-you can cope with it-especially if it means your daughter is able to enjoy more of WDW by using the pass.
I'm afraid one of the things all us parents with ASD kids have had to learn is to grow a thick skin to help us deal with the challenges (and ignorence of our kid's disabilities is one of them) we have to deal with !
 
We just returned from our 4 night trip with our daugthers... our 4 year old DD has Aspergers Syndrome. All I have to say is Disney is amazing.

First, on the topic of the Guest Assistance Card. We brought a letter from our psychologist and the IEP from the school district. We must have gotten lucky, because with almost no explaining the Cast Member at Epcot Guest Relations said she understood the condition and gave us a Guest Assistance Card with a green stamp indicating expedited assistance to attractions. We used the card when the waits were more than 15-20 minutes and never twice on any attraction - and we still got there at park opening for EMH, and used FastPasses so we didn't always have to use it. As a matter of fact, we didn't use it one time all day at Epcot because the lines were manageable. But we couldn't have made it through the Magic Kingdom or the Animal Kingdom without it... the heat and crowds really got to her at those parks and sometimes it was difficult just to walk the length of a FastPass line (e.g., Kali River Rapids). The CMs all immediately recognized it and to my knowledge other guests only noticed our "special" card only once... ("Hey, all that guy did was flash some card"). We never felt obvious or embarrassed.

Second, we have our daughter on a GFCF diet. We mentioned this when making our Priority Seatings and again when we were seated. At Tony's Town Square and Cinderella's Royal Table, the chef came out to personally offer GFCF selections, including GFCF bread, pasta, meatballs and even a GFCF cupcake for celebrating our older DD's birthday. I was extremely impressed with the personal attention and the extremely good food. Outside the Magic Kingdom, good GFCF selections also were offered, although no personal chef visits!

We certainly will go back many times... it is awesome to go to a place where everyone understands your needs.
 
Glad to hear that you had a fantastic trip. We are leaving in a few weeks and we are very concerned about the crowds and the heat.
 
I am glad it went so well and the cm's were so helpful. We leave in a few days, and I am quite nervous about DD who is 4. Like gritzel, I am also worried about the heat and crowds, and also DD's meltdowns, although I pray they are few. I am definitley going to take advantage of FP and the GAC.

Thanks so much for sharing your positive experience. It makes me feel hopeful for a really great trip!

Denise
 
As far as the crowds and heat goes, we did what all the guidebooks recommend... we got to the park at opening (or pretty close) using EMH, stayed until lunch, then went back to the hotel for swimming and/or naps until 4-5 p.m., then went back for dinner and an evening of rides. This really worked well. By about 11 or noon each day, we could sense that she wasn't going to be able to take much more. Even the one day she didn't fall asleep mid-day, a nice lunch and the downtime in the quiet cool hotel room re-energized her.

Also, I felt the heat and the crowds were the worst the day we were at Animal Kingdom... even though the temperatures were about the same as other days. I had only been there once before, and it is clear that the design of the park doesn't allow for very efficient crowd movement, especially in Camp Minnie Micky. There were many times we felt it was hard to move at all. As much as we enjoyed the attractions, if I were to skip one park, that would be it. She seemed most stressed out during our time there.

Make your priority seatings for meals if you haven't already. Some of the restaurants were only taking people with PSs. We did one character meal, which she really liked. We had planned to go to Teppanyaki for dinner that night, but overslept our nap and didn't make it... so we got right in to the character dinner at the Swan (we stayed at the Dolphin)... it was great - only half the restaurant was full and the food was quite good.
 
Originally posted by Hieatt

We certainly will go back many times... it is awesome to go to a place where everyone understands your needs.

Yep...and why we bought - sorry, OT plug for - DVC:teeth:

"Been there, Done that....Goin' Back!!"
Love WDW!!!
:sunny:
 

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