Aspergers, high-functioning autistic children Options

[cathymccaughan]

Just a spot where we can discuss therapies and get advice on home-schooling our kids with aspergers and other forms of autism. Post helpful links, vent when needed and brag about the minor accomplishments that are really major to us!

On my homefront, today my 13-year-old som is actually having a good day. For the first day in two weeks he is doing his work and has a good attitude. I think it's because I started putting time on the I-Quest on his assignment sheet. Then again, he may just be happy because he has horseback riding therapy today. Personally, I hope it isn't raining during horse time cause I have to attend my 10-year-old daughter's (not homeschooled) Open House tonight and don't want to look like a drowned rat while smelling like a horse.

Cathy

[carmatlock]

What are some things to look for to know if your child has Asperger's or Autism. I have been told by several "professionals" they think my 4 yr old has one or the other, then some people say maybe PDD Pervasive Development Disorder. Then another said ADHD and then some say he is just a little boy. I have taught Day Care before I had kids and so I can tell something is not quite right.

They say he may have Autistic characteristics. I have been on internet searches. All this was this summer and I kinda thought it had died down about the talk and now they are bringing it back up again.

Any info you can give to help assess a child to know one way or another. . .If there is anything like that. . .Not sure

Just wondering.

Thanks
Carmen Matlock

[kpmom]

Carmen,

Have you discussed your concerns with your pediatrician? He/she can refer you to a neurologist who can diagnose. Who is telling you he might have autism/aspergers,adhd?

[carmatlock]

Well this summer it started out an Occupational Therapist came to my home for my twins and she just said He has either PDD or autism. Then I started crying because I was just voicing I had some concerns with his Oppositional Attitude. I could say Purple and he would scream and say NO IT IS NOT!! Anyway, I felt this "blow" from her words and I started just crying right there in front of her once she gave her "assesment". No sorry I think this or it could be this--she just blew me out of the water and said He has ___. She knew my concerns of homeschooling and went into and you may not be able to handle his "differences" at home and schools are more equipped to handle such children. Just totally blew me out of the water completely!!

Anyway, from there I did call my pediatrician and she saw us in the office within 24 hours and I cried from Mon when that first lady told me her assesment till Wed. She did say she thought there might be "something". He can not have his ears looked at by her without having 3 nurses hold him down and the whole time he is screaming. He pulls his hands up to his mouth and jumps to a sitting position. He does not cry easily if hurt. Several other things. Anyway, we went to a Lisa Wallace MS LPC (I think some form of Psycologist) then she referred us to a wilson Renfroe PSY D. The last name I was excited for BJ to see because he had a son who had autism. But all he said is he did test out for ADHD. Thought he had lots of eccentric tendencies. Also referred us to a Donald Fulsom who is an M.D. in comprehensive Psychological Services. He put him on some for of Ritalin. The coming down off the drug made him much more oppositional than just without drugs. I voiced my opinion to Fulsom, who said he would change the drug. We tried Abilify or however you spell it. He slept for almost 26 hours. Not straight--but he was very groggy--lay in the floor a lot. I did (HAHA) enjoy the break from the oppositional behavior so I was able to regroup in that time--rest-relax so once he was back to himself A) I knew he would not be taking the drug again and I was ready for him emotionally when he did get to his normal state again. Anyway, that was Aug and I decided I could handle him better without drugs that with drugs. But the Occupation Therapist said something the other day and it made me sit up--so I said well is there anything you can put your finger on with BJ, she said well Autism is a large umbrella and he could have some form of it--characteristics of. He is very smart. Already trying to read at 4. Just went thru Book 1 of Kindergarten b4 we hit a road block. Knows alphabet, numbers beyond 20, can write all these things, knows shapes I can not even spell like trapezoid and parallelogram. Youget the picture. Intelligent. So that is why I did not think too much. Anyway, I should probably get back to the dr fulsom. Just got scared with all the drugs. I could go on and on. Once we were at the zoo--April or so--He wanted nacho cheese, it was in a container for dipping our chips. He asked for a 2nd helping. I gave it--He started screaming saying Cheese goes like this--not like that--and he was doinig his wrist around and around and around. Screaming so loud "tables" of people were looking at us. Then when we see people either in our home or out in public if they talk to us--he does a little rank and once in our house he looked like a pup chasing his tail--going round and round on his bottom. I will let this be all for now. Sorry this is a novel.

Carmen

[italianmomof4]

My son is 14 and had all of those diagnosises. He was ADHD, no wait PDD, no wait Aspergers with psychotic tendancies.... FRUSTRATING! I think 4 is tough to diagnosis. It took us til he was 12 to get a diagnosis of the lattter, however, he also has all of the prior things too. I would keep trying to find out what he has, but school him where he is mentally. If it is remedial, go with it. If it is accelerated one place and slow in another, go with that. Hang in there.

[carmatlock]

I do go in Dec for his 5 yr annual check so will be able to maybe get some more answers from the pediatrician at that time

Still hoping and praying! (for just an answer of some sort)

If I knew something I am the type that would go get every book at the library and read up on it(and did most this summer but the autism books I found were not what I needed.)

Carmen

[carmatlock]

I think this is so funny. What you said about him being so young to be diagnosed as of yet. I am on your side. My mom's friend was coming down on me saying how could this have gone undetected all this time (almost 4 years at the time of the "diagnosis") and you not know he had a "problem". Which I had twins and they had lots of complications--a month in hospital b4 coming home--surgery for one of the twins--slow to walk--slow to talk--(still working on that one)--3 therapist in home several times a week--now going in town 2 a week for speech and maybe physical therapy as well. I know there is no excuse for not seeing a "problem", but also I originally thought this might be like a jealousy of the twins. I knew it was hard enough being a big brother to one at a time--then to bring home 2 at one time. I know he had a tough time with this. My mom is ready for me to put him on drugs tomorrow if I could. I just want him to not have to deal with that right now. We do have tough days--oppositional wise. He loves fighting with me when he gets in those moods. I just do not want him on medicine. He may have to have it later, but like you said he is so young for all this. Thanks for saying he still had time to figure all this out. You really helped me. I thought maybe I was a moroon for not seeing it b4. You really encouraged me.

Thanks for all the help!

Carmen

[labellady]

My son is high-functioning autistic. I had a difficult time getting him 'diagnosed' so he would not 'fall through the cracks' at public school. The MD said it was autism, however see sent him for a psychairist for an exam(4 hour exam!) See said he was ADHD. So they met in the middle with PDD. There is a large umbrella for autistic problems. PDD (in my opinion) is what they tell you when they can't agree or don't know.

The teachers and thearpists at public school said he was showing classic tendencies for Asbergers. I read up on the subject and I agree. Asbergers is under the autistic umbrella. I use high-functioning autism because people seem to understand what I am talking about.

I pulled my son out of school at the end of third grade. He just couldn't handle the public aspect of school. He was in special ed. but they wanted to mainstream him. I didn't think this was a good idea, he kept coming home with stomach aches and didn't want to go to school. When I pulled him out, no more tummy aches or tension!

The symptoms are different for each child. My son didn't speak until he was 3 and a half but he was reading when he was four. He is a very smart child. However, he has his low subjects...handwriting, math and social skills. When he was younger, he didn't make eye contact (still has trouble with that but getting better), he didn't like noises(sirens, some toys, other odd noises), he still likes to touch different types of material(silky and velvet and different textures). He has other quirks as well.

Hope I have helped. It is a challenge to homeschool him, but I feel it is worth it. Never a dull moment...

[carmatlock]

You all are helping me so much. You will never know how joyed my heart is to have gotten to be friends with so many (and helpers as well) God always knows what we need.

My son does not make eye contact and we are working with that with his occupational therapist. He seems to dislike noise--when he hears a sound he mimicks it in a weird way. AAAggggg.or something like that. He pulls his arms up to his mouth and makes a funny noise and drops on his butt. He has a way of kicking out his legs and dropping on his butt without caring that it will hurt once he falls. He also does not seem to "mind" pain. He rarely cries. He does not like the math even though he can count very high. He can add 3+4 with rocks or dinosaurs or what ever but dislikes the work.

We take the twins to public school twice a week for speach and he sees the children some we know from Sunday School so they are friends--but at any rate he starts acting out when he sees the kids and one teacher called him down in the hall. It really made me mad--not that he should not have been shushed, but it was the way in which she did it. She touched his shoulder and told him he would have to be quiet and get out of the way of the other classes. And then kinda pushed him towards me to get him out of the way of her class coming down the hall. But I don't think he would be able to be in public school. It seems to stress him a little bit--like you said about your child. (forget if you said s or d) Sorry

Thanks a million for all your help!!
I think you guys are great!

Keep up the good work of encouraging others.
Carmen

[carmatlock]

Sorry I keep thinking of things to add to this.

He repeats several scenes from movies--word for word--kids were lined up inside Chick-Fil-A playing tubes one time just listening to him do what I call a dialogue of Brother Bear once. (this was early April or so)

Then the other strange thing they say he does is lining up *animals* *cars* etc. And he gets mad if they don't "mind" him by standing or staying in place. He does not say mind--I do. I know none of these things mean anything alone--but you put them together and I think that is when you start adding it all up in your head that there might be a problem.

They said in his letter from one of the dr. THat he had odd-eccentric behavior.. I am still looking for the letter to tell you all some other things they said. There were several things they said about him.

Thanks for listening.

Carmen

[labellady]

My son seems to have a tolerance for pain too. I forgot to mention that before. When he was younger, he would line things up. He would pitch a fit if you messed with them too! Now he loves legos and he likes building odd-looking things. I try to encourage his imagination, he never seemed to have one before.

The pain thing worries me the most. I don't know when he is hurt. The other day, he was climbing trees and said he fell. He didn't say anything else. I thought he was okay, but at my other son's soccer game, he was limping and saying his foot had a cramp. When we got home, his ankle was swollen! I think he might have sprained or strained it in some way when he fell from the tree.

He is eleven years old now. I forgot to say that earlier.

[carmatlock]

Well now talking to you all, I may actually believe he does have something. I may have been in denial. But after talking to all of you--I can come to terms with it a little better. Thanks for all your help with this.

The other problem I have is the pediatr. said he was very short. Now my mother gmother gfather me my dh, dhmom dh sis, everyone in our family is short. The twins at 3 are almost the same height as my almost 5 yr old. She said they were prob going to do a test on him about his height. Don't know what to think or expect. Kinda scary. I will let you know. His bday is Nov but he won't be seen till Dec. Dreading what may be ahead. If he is short I can handle that but she is acting like there may be more of a problem--maaybe it will be nothing at all!!!

Carmen

[kpmom]

Carmen,

In the course of your research have you come across the term "hyperlexia"?
These are kids who have an early ability to read (before 5) but have language and social issues. Some people feel hyperlexia belongs under the autism umbrella, others do not. Alot of the things you describe about your son are similar to what other parents of hyperlexic children describe (need for "sameness", echoing lines from videos). As you say about your son, these are very intelligent kids.

I'm sorry, I don't have web sites right at my finger tips, but a search of the term "hyperlexia" will give you the few, major web sites that are out there.

I'm just now finishing a book on the subject I got from Amazon, "Reading Too Soon".

[carmatlock]

With the Hyperlexia is there a medication regiment? Did not know if all with something needed to take meds. I will bring up this name at the next dr visit. I have not seen any of the psycological dr's since August. Do you think I should stay in contact with them or just let them go by the way side. I have not even called since I got that drug that made him sleepy. I just called to say he slept a lot and he said don't give any more and I never called back. I know some of the web sites for Autism and the others (have not checked out Hyperlexia yet) but they talked about suicidal tendencies--so should I keep him in close contact with dr's that are able to help??

Just wondering.

Carmen

[kpmom]

It's hard to say about whether to keep in touch with those drs. or not, Carmen.
Now that your son is "on record" as a patient, you could always see them in the future, if needed.

Are there any good neurologists near where you live? I'm not thinking for medication, necessarily, but for a diagnosis. It makes me angry that all these professionals are telling you he might have autism/aspergers/adhd, but it doesn't appear anyone has referred you to someone who can give you a definite diagnosis!

Regarding hyperlexia; no it doesn't have a medication regiment (although some kids are on medication for some manifestations of it). Believe it or not, not all professionals have heard of it. Some people feel it's part of autism, but some people feel it should be a "stand alone" diagnosis. Kids with it are very visual learners, rather than auditory. Alot of "out-of-control" behaviors by these kids have been dealt with successfully once parents realized these kids do well with visual schedules (either a written schedule, or a picture schedule, or both), because their auditory understanding is so poor, they honestly did not know what was going on around them, or what was being said to them, without visual aids.

In the book I'm reading about it ("Reading Too Soon"), one boy would tantum if his mother didn't play "Candyland" with him everyday when he wanted her to.
He didn't understand "later", or "after this we'll play". Once he was diagnosed as hyperlexic, he and mom wrote out a daily schedule of things he and she had to do.
"Play Candyland" was always in there, but after chores, errands, etc. Once it was in writing, he was fine, and didn't mind waiting.

I don't know if this is your son or not, but some of the things you wrote about him rang a bell so I thought I'd mention it.

One way or another, I hope you get some answers soon, Carmen!

Take care!

[carmatlock]

I think the nearest Neurologist would be Dallas. I am hoping to "spur" my dr on this Dec to be seen by someone and get some answers. If Dallas is what we need, than I hope we can get that. Thanks for all your help. I really appreciate all your post they are helping me more than you all will ever know. I will let you all know what is happening. Thanks and keep the letters coming. If there are other books that you all think I should read let me know--I will check my library for Reading Too Soon. Will check into that. I also need to buy The Out Of sync Child and The Out of Sync child has fun.

Carmen

[italianmomof4]

Carmen
Sorry it took me so long to get back here...lol. Your little one sounds a heck of a lot like my son did. I know that going through the motions is heartwrenching and frustrating. A diagnosis doesn't mean the end of the world. It just means a new outlook at the world. For us, my son can't handle the stimulation of my large family. He now lives in SC with my parents where he is an "only" child. For him, it is really the only way he can survive. He has to be heavily medicated to keep the psychotic side of him quiet so he can function. Would any parent choose that for their child? I doubt it but it is what has to happen for his benefit. When we were dealing with this garbage, we had a wonderful pediatrician who is a dynamic man of God. He helped to ease our minds by explaining that sometimes you have to phisiologically quiet the mind before you can quiet the spirit. It clicked. How could we ask him to relate to use when he couldn't learn the basics to allow him to do so? It is like asking a child to read without teaching him the letters of the alphabet. It can't be done. I would pursue a possible diagnosis. No matter what they find, it isn't the end of the world. Yes, your world may change. Yes, it may not be the way you thought or the way you would choose. However, if in the long run you wind up with a fairly well adjusted happy child, isn't it worth it in the end? Medication isn't the answer for everyone. I always say to pursue all other options first. If after that you go the med route, you won't have any what if's to worry about. Hang in there.