Austism question.

[buzz for boys]

Hi please dont anyone be offended by this question but I am looking for information on Autism and am hoping that someone on this boards can either direct me to the best place to look or help me understand this condition for myself.
My DS is 4 and we have suddenly had loads of people tell us they believe he is autistic , we dont believe they are right but dont really understand this condition. My son does have his problems but has had cancer since he was 18 months old and we as parents believe that this has caused problems and that with the amount of people we have seen autism should ahve been picked up a lot sooner surely ??
Please can someone help us to work out this in our own heads so we can argue with info behind us for our son.
Thanks in advance.

 

[wide awake]

Autism is a condition which affects language and social skills...to give a very broad description. Children can be affected to different degrees, and I have thought for many years that my son's autism is not the autism known as Kanner's or classic autism. Certain habits are common...toe walking, hand flapping, perseveration, wish for sameness..but these are present in normal children to a degree. If I were you, I would talk to his doctor and ask if your son's treatments could have caused his language/social skills to lag or be absent.

 

[Nik's Mom]

Autism is a spectrum disorder, so it's not unusual for 2 autistic children to have different symptoms. My son has high functioning autism. He doesn't do the hand flapping or toe walking. He has trouble socializing with kids his own age, but no problem interacting with adults or younger children. He does have a speech delay, has to be on a schedule, is fascinated with rope and must carry it everywhere. He repeats phrases from movies, and makes us repeat them at times.
Tell me what symptoms your child has, if you don't mind sharing. Who is saying that your child seems autistic. If it is a teacher, school psychologist, or someone knowlegdeable about autism, that is much different than a friend or neighbor who may know nothing about the disorder.
I can tell you it took us 2 years to finally find a doctor who was able to definitely tell us our son is autistic. It can be a very hard thing to diagnose if your son is high functioning.
Sorry about your son's cancer. I hope is cancer-free now.

 

[roseprincess]

Here are a couple of websites.
www.autismillinois.com This site gives an indepth explaination of autism.

Also www.autismspeaks.org

Hope this helps.


Rosemarie

 

[DisneyDreams4P&B]

http://www.autism-society.org

http://www.autism-pdd.net

These are two sites that I use very frequently. You might also want to do a google search, include the state where you live and the word autism. I live in Maine and we have a wonderful chapter of the Autism Society. They have been so helpful with our son who was recently diagnosed at age 5. Autism can seem scary because most people know nothing about it. There are many forms of it and the small minority of children/adults have "Raiin Man" syndrome which most people think of when you say autism.

Please feel free to email me if you have further questions or I can help in any way. :thewave:

 

[lajones81]

As a current teacher of an autistic student, I can also attest that each child has different descriptors for their condition. The student I work with does not like it if our schedule gets off in any way (which is wonderful when we have an assembly, etc.), but we've worked around that this year. He enjoys repitition and movie credits (not the actual video I may show in school, but the credits - go figure!). He is a wonderfully caring child and I have learned a lot from him this year. He struggles with comprehension, but is an excellent, fluent reader (at times better than my regular education students!). I'm not sure if I can answer any questions since I think there have been some excellent websites already posted. Best of luck to you!

 

[SueM in MN]

There are many forms of it and the small minority of children/adults have "Raiin Man" syndrome which most people think of when you say autism.

And on the other end of the autism spectrum is Asperger Syndrome.
My one nephew has that. He is very intelligent, kind of "nerdy". If you do a google search for Apergers, you will find that there is lots of conjecture that Bill Gates might have Aspergers.
So, you can see there is a lot of variation in the Autism Spectrum. That's also one of the reasons that sometimes people are not disagnosed with it very early on.
My advice is to look into the situation with an open mind. If lots of people are mentioning that they think your child is autistic, there is some reason for them saying that. Maybe they are not right about autism, but there is something that they notice and they are trying to be helpful to your child. Whatever the cause for them thinking what they are thinking, the more information you have, the more you will be able to help your child.

 

[twojo21]

my brother was diagnosed at 2 1/2. he has broken speech & understanding, repetitive nature with daily schedule, movies, foods; he has the mental functioning of a 6 year old and has autism. he is however the greatest blessing to us & i love him very dearly.

i would suggest getting some more information from the autism society. i would also suggest checking with a dr or specialist to verify your childs health &/or condition.

best wishes to you & your family.

 

[MBW]

We have two sons with autism, and their behaviors are completely different. One stims and spins, the other doesn't. One is very particular about his things, the other perserverates only on wooden railroad track and video cassettes. Both are very sweet and affectionate, and have benefitted tremendously from the wonderful early intervention services Maine provides (they both started ABA by 2.5.) Our first son, now almost 7, took nearly a year to diagnose - with our second son, we new as soon as he began to regress at 21 months. With the recent increase in prevalence of autism, more medical personal are able to diagnose it faster and earlier.

Just wanted to send a shout out to Jenna above! We're also in Portland, out in the Riverton area.

 

[DisneyDreams4P&B]

Saw your post today and I about near fell off my chair, we are near Riverton too..what a small world. Have you taken the Cruise before? We are booked on the 9/10/05 Magic and nervous as all get out. Any tips on traveling (we did Disney World last year and it was a great sucess but I planned my butt off and had us on a schedule)?

Thanks..

Jenna

 

[DisneyDreams4P&B]

Just checked out your blog..it was great, I didn't realize that we could register with Guest Services and get the wristband, Wow that would have been a help for our trip last year.

Jenna

 

[MBW]

Saw your post today and I about near fell off my chair, we are near Riverton too..what a small world. Have you taken the Cruise before? We are booked on the 9/10/05 Magic and nervous as all get out. Any tips on traveling (we did Disney World last year and it was a great sucess but I planned my butt off and had us on a schedule)?

Thanks..

Jenna

We're going to WDW for three weeks in the middle of our year-long trek around North America, but you probably already know that by reading our blog, Trip To Wonderful

Would you be interested in do a write up on your cruise experience for the blog and book? We'll probably never take a cruise (DH is not a cruise type of guy), but I'm sure there are plenty of families of autistic/special needs kids who would consider it.

Does your son go to Riverton? My eldest daughter does (we now ABA homeschool our eldest son.) Our younger son is at the May Center in Freeport, although he was at the Spurwink Therapeutic School on Bishop's Street earlier. Our house goes up for sale next week - know anyone interested in a 1913 restored Four-Square with 2.3rd acre and a barn?

 

[DisneyDreams4P&B]

I would love to report back, I think that it might help familes in the future on whether or not they should invest the money. My son will go to Riverton next year, right now he is at Children's Odessey, they follow the Greenspan model and he has been doing great!. I would love to pick your brain about your experience at Riverton.

 

[MBW]

I would love to report back, I think that it might help familes in the future on whether or not they should invest the money. My son will go to Riverton next year, right now he is at Children's Odessey, they follow the Greenspan model and he has been doing great!. I would love to pick your brain about your experience at Riverton.

Greenspan is great. I have a friend who actually has him as her daughter's pediatrician! We've been incorporating a lot of Floortime into Sam's home program, as he's really reached his limit on how much ABA can help.

You probably don't want to hear my experience with Riverton, as it isn't a good one. They have some great programs, but are very anti-involvement on the part of parents in their children's education. Sort of the "we know best, don't you worry your pretty head" model of teaching (btw, I'm a former teacher .) They were pretty good while I was running for the Maine Leg last year, but as soon as I lost the primary (by a mere 25 votes, sigh...) they completely figured they were safe, violated Sam's IEP and wouldn't even let us into the classroom.

Sam, however, isn't as high-functioning as it sounds like your son is (well, I should say, he wasn't very HF - a year into his home program and he's lost most of his autistic traits - just a moderate language delay and some mild perservative behavior.) If he fits well into their models, then you'll have no problem - if he doesn't, you have my empathy. Our NT 8 year old has had a wonderful experience at Riverton, so they're not all around incompetent.

I look forward to the write up on the cruise line. If you ever want to meet for coffee, let me know.

MB

 

[mbb]

I just wanted to say

and keep us updated...we'll be thinking about you

 

[ladydancer]

You need to talk to your childs doctor! With that being said....I tryed telling my son and dil when my dgs was about 18 months old that something wasn't quite right with him. They were both in denile. I would bring it up ever so often. Then when he was about to turn 3 I got into an argument with them. I was insisting they take him to his doctor and talk with him about T.J.

Finally they gave in and I went with my son to T.J.'s doctor. The doctor wanted my son and dil to answer a 5 page questionaire about him. Then advised them to take him for an evaluation.

It was determined he was austic. He just recently turned 6 and has improved so much since he has been going to school and getting special help since he was 3.

I have no idea if your child is austic or not but you need to find out if there is a problem. If there is a problem it will serve your child better to start getting help when they are very young than when they are older.

We will be taking T.J for his first WDW trip in April.

 

[buzz for boys]

Firstly a huge thanks to everyone who has put either a website or advice I have not had chance to check the boards and was amazed to see the response I had recievied.

Secondly I am not at all ashamed of my son and never will be he is an amazing child and has been through so much already I just wanted to find more information on Autism so that I could be better informed as at the moment the proffesionals that are involved with my son cannot agree between them whether he has autism or not. We had a meeting last week where the proffessionals were actually arguing amongst themselves as to who had the better knowledge to diagionis autism. I have others which believe his syptoms are down to the trauma of the chemo and not autism but ion the mean time we get left in limbo and dont really know what to make of it all!!
For those of you who asked his syptoms are ;
A very strict need for routine and the detraction away from this no matter how small causes great distress.
He gets very focused on fantasy play and insists the whole family play along when he plays a game he can zone out anyone and anything else in the room.
He is very hard to discipline and does not mind being punished repeatdly for the same thing.
He has a lousy memory - struggles to remember names but can recall events in amazing accuracy.
He does struggle to form friendships with children but loves adult company and is not bothered by strangers.
His speech and language was lousy but after going to nursery his speech is now excellent in fact he does not shut up!!
He is also exceptionally loving which I thought does not fit into the Autistic spectrum.

I would appreciate honest feedback from this from anyone who has an autistic child as to wether you feel that some of his proffesionals have a point. He is due to start school in september and I feel in his best interests we need to know where we stand with this before he starts. Also if he is autistic do you recieve help as to how to discipline with success.

Thanks to everyone and apologies for the length in this post.

 

[Nik's Mom]

It's so hard finding help. We went through the same thing with our son. It took 2 years to get a diagnosis. In our sons IEP meeting, the teachers and school psychologist were argueing over whether my son had autism. They tried to hide it, but I knew they were in disagreement. We finally went to a pediatric neurologist and he confirmed it.
Don't let the affection fool you. My ds is very affectionate. He gives hugs and kisses and is a very loving and kind hearted child. My Dad is currently losing his battle with cancer, and my ds tries to comfort my Dad.

It's hard to say if your son is autistic or not. Some of what you are saying sounds a lot like my son. I would just say not to give up. Eventually you will find someone who can help. Hang in there!

 

[SweetSpot]

If there is any doubt in your mind you should see a Developmental Pediatrician or a Pediatric Neurologist (we went to both). My DS is 15 and just 10 years ago it was incredibly difficult to get a diagnosis. My DS could read at 2 but didn't have any of his own expressive speech. He could recite movies but not ask for something to drink when thirsty. I was sure I had a genius and was in complete denial, mostly because he was so incredibly loving and autistic children were suppose to not be loving.

Every autistic child is different. Now with the publicity that autism gets more people are looking at their child or children they know and wondering. Your son has been through trauma and the cancer alone could have caused his delays or differences it doesn't necessarily mean that he is autistic. Read, prepare yourself so you are able to ask questions and take him for an evaluation. If he is autistic finding out sooner is better than later and if he isn't your mind is relieved. Although years ago I believed it was, autism is not the end of the world for your child. Our son has done better than I would have ever believed possible.

 

[ladydancer]

Firstly a huge thanks to everyone who has put either a website or advice I have not had chance to check the boards and was amazed to see the response I had recievied.

Secondly I am not at all ashamed of my son and never will be he is an amazing child and has been through so much already I just wanted to find more information on Autism so that I could be better informed as at the moment the proffesionals that are involved with my son cannot agree between them whether he has autism or not. We had a meeting last week where the proffessionals were actually arguing amongst themselves as to who had the better knowledge to diagionis autism. I have others which believe his syptoms are down to the trauma of the chemo and not autism but ion the mean time we get left in limbo and dont really know what to make of it all!!
For those of you who asked his syptoms are ;
A very strict need for routine and the detraction away from this no matter how small causes great distress.
He gets very focused on fantasy play and insists the whole family play along when he plays a game he can zone out anyone and anything else in the room.
He is very hard to discipline and does not mind being punished repeatdly for the same thing.
He has a lousy memory - struggles to remember names but can recall events in amazing accuracy.
He does struggle to form friendships with children but loves adult company and is not bothered by strangers.
His speech and language was lousy but after going to nursery his speech is now excellent in fact he does not shut up!!
He is also exceptionally loving which I thought does not fit into the Autistic spectrum.

I would appreciate honest feedback from this from anyone who has an autistic child as to wether you feel that some of his proffesionals have a point. He is due to start school in september and I feel in his best interests we need to know where we stand with this before he starts. Also if he is autistic do you recieve help as to how to discipline with success.

Thanks to everyone and apologies for the length in this post.

We were told by T.J.'s doctor that the best thing to do is see a neuroligist. As others have said about there children our T.J. is very loving and gives me hugs and kisses all the time. He doesn't do the flapping of the arms as I have heard about. There are a lot of aspects to austism. He watches movies and can resite them. His favorite thing is building trains. He loves trains.

My dearest hope is everything is fine and it will all work itself out. Like you said perhaps from all he has gone through might be the problem and he will catch up later. For now take him to a pediatric neuroligist to make sure.

Good-luck