Asperger's questions (This is long)

[CinderelliT]

Hi there. I am really hoping that I can get some insight from my wonderful Disney peeps. I think my son might have Aspergers, but we are not sure.

We have had problems with him since he was little. He has ocd tendancies with certain things, and several issues (I'll get into some later). He is my first child, and he is a boy, so I kept thinking these things are normal. But as he gets older, certain areas are becoming more difficult. We've talked to his pediatrician about it, and she said that he is too young for a diagnosis. He's 5. He just started school, and his teacher who is also a special education teacher said that she believes that he is autistic, and that we should talk to the school about getting testing for him in a couple of weeks. I'm hoping that this will help us out as much as him, but I am overwhelmed and don't know where to start.

Some of his issues are social issues. He is very hyper and can be aggressive at times. He has a sister who is 19 months younger than him, so I find it difficult to determine what is aggressive and what is jealousy. But he does have a hard time making friends his age, and when we've had friends come to visit, he will either talk them bored about leggos and Star Wars, or he will totally ignore them.

We've tried signing him up for gymnastics, football, and t-ball, and all of those ended badly. Gymnastics he did good for a while when he was in the mommy and me class, but when they moved him up into the next class, he freaked out and cried and screamed several weeks in a row until they kicked us out. Football and t-ball he just screamed and wouldn't even let go of us to try to participate. A couple of days of that, and we gave up.

He also has sensory or stimulation issues. Disney for us is either wonderful or he has a complete meltdown - many times when having to wait for rides. He has no concept of having to wait his turn (even though he has been in pre-k and was a great student). He has severe anxiety about something bad happening to him all the time - even at Disney too. I also have anxiety, so I don't know how much of this is learned from me. He also doesn't like loud noises. I am a musician and have pretty much given up on playing b/c it upsets him. Also, at dd's dance recital, the music was loud and he freaked out and hid under a set of stairs. Today, we had a praise and worship jazz band come and play at our church, and he got upset by the loud music, and his Sunday school teacher and I were able to calm him down by rubbing his back. She is also an elementary teacher and said she thinks he is autistic.

He also has problems sleeping at night. He gets leg cramps, nose bleeds, and wakes up a lot. The other night - he was getting anxious about starting school and woke up screaming on the top of his lungs and got so upset that he threw all his toys around the room and wouldn't let us comfort him. He kept yelling at us to go away and would throw things at us. After he he was worn out, we had to massage him to get him to go to sleep. That night was like one of my low points. I just cried and cried after that because I don't know what to do to help him.

We live in a really small town, and we have 1 child therapist here. He has been going for several months, but it is not helping. She thinks that he is ADD, but suggested speech therapy for him. We have no speech therapists any where near us, so I don't even know why she would suggest it. Also, his speech is quite normal, but she felt that he was having trouble expressing his feelings. We've about given up on her, b/c she is expensive and not helping.

I am wondering if any of this fits with what other parents have experienced. If so, where do I get more information? What do I do?

Also, we have a family trip planned to disney next month. It will be our 2nd time ever staying on property - last time was in 2007. I am hoping that by having the option to go rest at the hotel - that this will help us out with his behavior and meltdowns. I am also thinking about getting a GAC card in case we need it.

Does anyone have any suggestions or advice??

TIA

(And if you read this all the way through...THANKS!!)

 

[Tigger822]

Sorry wish I could help. Loads of s and prayers
Lisa

 

[Mary Pops In]

You might wish to consider keeping a food diary for him. My SIL did this at the suggestion of her pediatrician. They were able to target items with red or yellow food colorings being a trigger for some difficulties they were experiencing with my DN.

Good luck.

 

[trekkie2]

Its hard when you live in a rural area, but it might be worth a trip to a nearby city for a diagnosis. I live in Colorado, and part of my job is assisting families with special needs kids. We have an autism clinic at The Children's Hospital in Denver, although its a 7 hour one way drive, its worth it to get a real idea of what is going on. BTW, i have a 24 year old with aspergers, it was a challenge but there are many things you can do to improve things, especially at his age. Before the age of about 8-9 the brain is able to "rewire" to improve some of the sensory integration issues and can make a huge difference.

Good luck!

 

[trekkie2]

opps forgot something

To get ready for your trip, you might try storyboarding. Find some video and pictures of what you will be riding/doing in the parks. Include the hotel, meals anything you can think of. Walk him through his "vacation day" do he knows what to expect. Locate some quiet spots in the park so he can decompress when the sensory stuff gets to intense for him. You might also try a stroller with a canopy so he can withdraw a bit from the noise and people. One of the things that really set my son off was the number of people moving around us, especially if they touched him. On our last trip my son was already 24 and he took his ipod and loaded with with music he liked and wore it that entire time to help filter noise. Some families also get earplugs to help filter.

hope this helps a bit.

 

[AJKMOM]

Just so you know, your pediatrician is wrong about age 5 being too young for a diagnosis. You should probably travel to a large city that has a childrens hospital for help and to set up services.

My son was diagnosd with autism at age three, even though I knew by age 2 that something was wrong. Getting his pediatrician to listen took almost as long, and in the end he said "Autism? I wish we could give him a pill or something for that." That was 19 years ago, and the research and diagnosing capabilites have come a long way since then.

Disney is a great place for us to visit with an autistic son, he loves it and is very well behaved.

 

[kirstenb1]

Just so you know, your pediatrician is wrong about age 5 being too young for a diagnosis. You should probably travel to a large city that has a childrens hospital for help and to set up services.

My son was diagnosd with autism at age three, even though I knew by age 2 that something was wrong. Getting his pediatrician to listen took almost as long, and in the end he said "Autism? I wish we could give him a pill or something for that." That was 19 years ago, and the research and diagnosing capabilites have come a long way since then.

Disney is a great place for us to visit with an autistic son, he loves it and is very well behaved.

I agree with pursuing an evaluation. Locate a large children's hospital, and make an appt with a developmental pediatrician. Bring any reports from your child's school, plus a copy of everything you've described here. Bring your son's favorite toys. The appt will likely last several hours, as he should meet with several different specialists. It may take a long time to get an appt, so please get started as soon as possible.

Our schools are not allowed to diagnose children. They are merely allowed to provide services based on a child's needs. The developmental pediatrician will hopefully clarify your child's issues and needs.

 

[persimmondeb]

Five is absolutely not too young for a diagnosis. Sometimes high-functioning children are not easy to diagnose (we went back and forth for years over whether or not DS was actually autistic, and developed a LONG list of things that were officially not wrong with him), but that's not the same. See if you can get an appointment with a developmental pediatrician or a pediatric neurologist. The speech therapy suggestion doesn't sound off the wall, but is not addressing your major issues.

For my DS, the more information he has, so that he knows what to expect, the better. I actually make us a printed schedule for Disney, so he can refer to it. He likes guidebooks too. If your son is not yet literate, there are a number for Disney that are full of good pictures.

 

[sorul82?]

Hi there! My DS13 has Asperger's. We received the "official" diagnosis around age 8, but we have known since he was 2. I'm going back to read your post, but wanted to post this link so you can see if your state offers anything like it:

http://www.teacch.com/

here's a link for FL Autism Society:

http://209.200.89.252/search_site/chapter_list.cfm?program_name=&state=FL

 

[mom3sonstt]

I also believe my son (now 19) has Aspergers. I totally understand about being in a rural area and not getting any productive leads. This son is my 2nd - he is 18 months younger than my first. When I took him for his baby appointments I told the doctor that I didn't think he was walking, talking, progressing in general like my first son and was concerned. His comments were that every child is different, and that "big brother" is talking for him (he was). Also Sean (my oldest) would sit Ryne (the 19 year old) down when he would try to walk. Sean was afraid "the baby" would fall so whenever he tried to walk Sean would go over and make him sit back down . When pre-school screenings came along he didn't have much in the way of language and started the ECE program. He screamed bloody murder at the bus stop - some days I just had to stick him on the bus, let the driver shut the door even though Ryne was screaming, and walk away. We learned after the first week or so that once he realized I was gone he would sit with Sean but some mornings he would still scream and hope that I would take him off the bus (heartbreaking). Once at school he did ok....as long as there was a routine that was not deviated from, and that nobody touched him.

As he went on through grade school they kept switching the special ed teachers. None of them ever referred us to a specialist for a diagnosis - they said he qualified for special ed services based on the category of "mental impairment". I didn't think to take him anywhere. My doctor didn't refer me, the so-called experts at the school didn't refer me - his IEP provided him Speech therapy and Physical Therapy and it never occured to me to look somewhere else for help too. Each new teacher he had would "diagnose" him - one thought he was having "strokes" because he would space out and not pay attention in her class. By middle grade school he was wrestling around with another kid, which gave the teacher pause on how to handle it. On one hand they shouldn't have been wrestling around (just playing - not really rough), but on the other hand she was so thrilled that Ryne was comfortable having someone else touch him that she hated to discourage it. In jr High and High School they developed a Life Skills class. Ryne was in it all the time except for PE, which he took with the other kids. By this time, even though he was in that class all day, at lunchtime he would talk to the other kids (non-lifeskill class kids). Anybody who would let him talk about WWE wrestling was fair game. That is his passion. He can tell you anything (and I do mean anything) about WWE - especially the Royal Rumbles - it's incredible - I wish it were a marketable skill! He has what he calls friends. The kids at our school have been amazing with Ryne. They don't tease him, or make fun of him, they are for the most part patient with him. During Spirit weeks (like for Homecoming and stuff) when they have class games in the gym, he has participated.


At Disney through the years when he was very little (and portable) we could take him on rides and if he didn't like them (Haunted Mansion, Snow White...) he would resign himself to being there, curl up in a ball and hide. As he got a little older (and we added son #3 - and Ryne was less portable) he would refuse to go on anything he deemed "scarey". His feet could have been buried in the pavement he was so adamant about not going. So we switched off a lot. As he got a little older we were able to reason with him. Told him if he would ride the ride and decided it was scarey he could just close his eyes. Eventually we kept his eyes open by trying to count the cats or dogs in Pirates, or the Haunted Mansion. When he was a teenager he would agree to ride rides "but only once". On our last trip there was not a ride he would not ride and he even raised his arms up and made funny faces for the picture in Tower of Terror. On this trip we were going to fly Sean down early a couple days ahead of us and we were going to drive, Ryne asked how come he couldn't fly down with Sean. We talked to Sean to see if he minded (the solo days were supposed to be a gift of sorts for Sean), and talked again to Ryne about the fact that it would just be the 2 of them and that we would not be there for a few days (didn;t want him thinking it would just be later the same day) He said he understood - and the two of them spent about 2 1/2 days together on their own - through airports, magic Express, checking in to an unfamiliar hotel and picking what parks they wanted to go to.

I think what helped Ryne through the years was that he had an older and younger brother real close to the same age. (there is only 4 years between Sean and Mark,......and Ryne is in between them) So the older kids know Ryne as Sean's little brother, so they were accepting of him, and the younger kids knew him as Mark's older brother. And they are typical brothers - they antagonize and pick on each other mercilessly......but nobody else can

In retrospect I wish I had known enough to get him somewhere for an official diagnosis, and to not just assume that the people at the school knew everything necessary. He is very self-sufficient - his reading level is maybe 3rd or 4th grade, his social skills are very low, he is not sensitive to touch (hasn't been in a long time) he will never have a driver's license (although he still tells me he wants to try to take drivers ed again), he's the sweetest kid you will ever meet - can't tell a lie....he tries, but if you call him on it he confesses. If he broke something and you asked him who did it he might answer "i don't know", if you then asked if he did it he would say "maybe" - but he would never say "no".

Oh when he was little I used to say he was like a cat. If you tried to pick him up and cuddle him he would cry and squirm away from you. But if you were sitting in a chair and he crawled up on your lap you considered yourself special. But like a cat, if you tried to fuss and pet, he would leave again.

 

[bookwormde]

A highly quilified Autism center can accurately diagnosis Aspergers at 5. It sound like your child has lots of underlying anxiety as well as Social, Sensory and possibly Executive function differentials. The sooner he gets the supports and accomidations he needs the better his ability to adapt and use his gift will be.

Get a copy of Tony Attwoods the complete guide to Aspergers which is availble on Amazon for about $17. IT will give tyou the basic initial information that you need.

bookwormde

 

[trekkie2]

i second this, Tony Attwood is AMAZING. I have been lucky enough to see him in person several times for training's and it made so much difference for us.