[mercyteapot]

CDC now says 1 in 150 kids have autism.... Does this surprise anyone here? Probably not. It seems even more common than that to me. It annoyed me a bit on MSNBC, where the reporter said ''parents and doctors disagree on the cause of autism'', as if: a) there actually is only one cause and b) all the doctors think one way and all the parents think another.... Gee, what about doctors who themselves have children with autism? I wonder whose "side" they're supposed to take...

[Jolie]

Mercy,

I believe that the incidence of autism has increased, but have to wonder how many kids with other disorders are mis-diagnosed (for convenience sake in the school setting) because it's easier to address the needs of a group of kids, rather than focus on their individual issues.

I personally know of 2 kids who have been "labeled" as autistic by their respective school districts, despite clear and convincing evidence (and statements from medical specialists) that they do NOT have autism. One suffered a brain injury from lack of oxygen during surgery at 3 years of age. The other most likely has Rhett's, but her parents' insurance won't pay for additional testing. Both children have some characteristics in common with autistic children, but also many differences. It is easier for the school districts to "lump" them in with the autistic children than to develop individual programs specific to their needs.

And both families feel trapped. If they insist that the "autistic" label be removed from their children's records, they risk losing desperately needed services. But by accepting the "label", they know that some of their children's individual needs will never be addressed.

This points out the critical importance of accurate diagnosis and differentiation of developmental disorders, and the need for cooperation between medical and educational professionals.

[33-weeker]

I have 2 kids with PDD-NOS (mild autism). I guess because I'm a nurse I'm not so bothered by labels. I deal with diagnoses all the time. My attitude was, "call it 'purple-polka-dotted syndrome' if you must - just get my kids the help that they need." The bottom line is - are the kids getting the proper meds/therapies/assistance?

My other child I am certain is bi-polar. At first I was upset because I felt the NP we see for med management was not believing me or at least not agreeing with me. She persisted in calling it the blanket 'mood disorder' and kept pushing the ADHD Dx, which was his original Dx. Perhaps he is co-morbid for ADHD - I'm no expert - but I only see hyperactivity & impulsivity when he is manic.

Anyhow, I finally read up on it enough that I began to realize that it is difficult to diagnose in kids (no proper DSM guidelines for bi-polar in children), and the Dx is usually not given this early (he was 5 1/2 then). I decided, since she was prescribing the correct medications for bi-polar, I was not going to waste any more energy getting caught up in the labels, so long as he's getting what he needs.

Some options for getting a correct diagnoses is to demand a second eval from the school, or get an independent eval from an outside source (MD, psychologist, etc.). Check your state's regulations for your school district and see to what you are entitled.

[mercyteapot]

Originally Posted by 33-weeker

I have 2 kids with PDD-NOS (mild autism). I guess because I'm a nurse I'm not so bothered by labels. I deal with diagnoses all the time. My attitude was, "call it 'purple-polka-dotted syndrome' if you must - just get my kids the help that they need." The bottom line is - are the kids getting the proper meds/therapies/assistance?

My other child I am certain is bi-polar. At first I was upset because I felt the NP we see for med management was not believing me or at least not agreeing with me. She persisted in calling it the blanket 'mood disorder' and kept pushing the ADHD Dx, which was his original Dx. Perhaps he is co-morbid for ADHD - I'm no expert - but I only see hyperactivity & impulsivity when he is manic.

Anyhow, I finally read up on it enough that I began to realize that it is difficult to diagnose in kids (no proper DSM guidelines for bi-polar in children), and the Dx is usually not given this early (he was 5 1/2 then). I decided, since she was prescribing the correct medications for bi-polar, I was not going to waste any more energy getting caught up in the labels, so long as he's getting what he needs.

Some options for getting a correct diagnoses is to demand a second eval from the school, or get an independent eval from an outside source (MD, psychologist, etc.). Check your state's regulations for your school district and see to what you are entitled.

I agree, as pertains to the dx of autism. What difference does it actually make if its in the kid's records? Who is that accesses these records anyway? It isn't a label, it's just a word. A magical word sometimes, since it is the only way some kids end up getting the help they need.

[Jolie]

Originally Posted by mercyteapot

It isn't a label, it's just a word. A magical word sometimes, since it is the only way some kids end up getting the help they need.

I understand what you are saying, but in the case of the little boy I discussed above, it is having the opposite effect.

The parents were surprised by the school district's "diagnosis", but didn't fight it since it did avail them of the services their son needed, such as close supervision on the playground, OT, Speech, etc. Now he's been in the district for awhile (3rd grade), and it has become undeniably apparent that he is gifted academically. (The district won't place him in the gifted program, though, because they say he lacks the social skills necessary to participate.) The district is insisting that the ASD "diagnosis" be removed, stating that he doesn't fit the criteria. (DUH! that's what the parents and medical specialists said all along.) But they will also DC the services he continues to need, most notably OT and Speech. The district is unwilling to accept the evaluations the parents have had done by local medical and developmental specialists which indicate an alternative diagnosis and a continued need for services, despite his academic standing. The parents are now in the opposite position of having to fight to keep an inaccurate ASD "diagnosis" in order to maintain their son's services.

It is difficult to understand or describe the "politics" of special education in this district. All I can say is that the school officials and specialists in this building detest parental involvement, and often undermine parents' efforts to become educated about their childrens' needs, involved in their education, or advocate for their children. Most parents get tired of beating their heads against a wall and give up. When they meet a persistent mother (like this boy's), they throw up every possible roadblock. I have no doubts that this will eventually land in court. How terribly sad, especially given that this is an affluent district that is not lacking the resources necessary to provide for this child's modest needs.

[mercyteapot]

Originally Posted by Jolie

I understand what you are saying, but in the case of the little boy I discussed above, it is having the opposite effect.

The parents were surprised by the school district's "diagnosis", but didn't fight it since it did avail them of the services their son needed, such as close supervision on the playground, OT, Speech, etc. Now he's been in the district for awhile (3rd grade), and it has become undeniably apparent that he is gifted academically. (The district won't place him in the gifted program, though, because they say he lacks the social skills necessary to participate.) The district is insisting that the ASD "diagnosis" be removed, stating that he doesn't fit the criteria. (DUH! that's what the parents and medical specialists said all along.) But they will also DC the services he continues to need, most notably OT and Speech. The district is unwilling to accept the evaluations the parents have had done by local medical and developmental specialists which indicate an alternative diagnosis and a continued need for services, despite his academic standing. The parents are now in the opposite position of having to fight to keep an inaccurate ASD "diagnosis" in order to maintain their son's services.

It is difficult to understand or describe the "politics" of special education in this district. All I can say is that the school officials and specialists in this building detest parental involvement, and often undermine parents' efforts to become educated about their childrens' needs, involved in their education, or advocate for their children. Most parents get tired of beating their heads against a wall and give up. When they meet a persistent mother (like this boy's), they throw up every possible roadblock. I have no doubts that this will eventually land in court. How terribly sad, especially given that this is an affluent district that is not lacking the resources necessary to provide for this child's modest needs.

This situation reminds me of something. When my son was in the elementary school, his teacher asked me if I'd participate on the Community Advisory Council (every district had to send 2 parents). I served 2 terms and believe me, that's enough for anyone's lifetime, but for some reason, the other parent had been participating since her daughter was in early intervention and that girl is now in 5th grade and her mom's still on the committee. To each their own.

The Special Ed director wanted to meet with us to discuss the Council's strategic plan to which we were to give input. In the course of this meeting, he actually said, right in front of me, ''yeah, these parents of kids with autism tend to get more for their kids because they're so vocal''. To which I replied, uh, is that supposed to be an insult? Administration is the one that sets up a system where sometimes the only way you can get them to meet your child's needs is to be adversarial. I do what needs to be done. I'd rather do it nicely, but if he's going to make me be a beyotch, than I will be. God knows it wasn't the first time in my life I had to be like that...

I do know that I've benefited immensely from the fact that there is so much wealth in this area. Number one, the schools are so much better than average. Number two, so many parents do have the resources to get lawyers and fight the system, that the system tries to get away with less than most other school districts. I have heard and read some appalling abuses of IDEA from people in other states. I know there are some where IDEA is nothing but words on paper. Parents can try filing suit, but since the courts in those areas won't do anything about it, what can they do? I hear the 9th Circuit getting slammed quite a good bit for being so liberal, but when it comes right down to it, the far left has been a friend to special education over the years. I do feel fortunate that my son has received the quality of service that he has and I think it is dreadful that we are still failing so many of the children in this country. Despicable, really.

[Dubah]

Originally Posted by nurs4kids

As I said above, my angel is 6yrs old and autistic..probably PDD-NOS (I haven't sought a definitive form of autism since original dx at 3 yrs old). We've not had the problems from the neighbors, thank God. My son doesn't throw the tantrums. Our issue for the neighbors has been his affinity for jumping on the trampoline...nude. He'd be out there fully dressed one minute, next thing we'd know he's butt naked..in the dead of winter. He's also known to come out of the house, down the steps to the pool with his swim trunks in hand for me to put on...again, nude..oh, and to relieve his bladder in the yard. Only one neighbor can see into our backyard, and they are a family full of teen boys, so maybe they are more tolerant because of this. He does not strip anywhere but at home, thank God. However, we also have to watch him inside. Sister is a year older and she will have company over and he'll walk out of the bathroom in the buff. The kids and their parents have been great so far, but we're constantly working on the nudity issue. If my daughter was at someone's house and the brother was running around nude, I wouldn't like it..regardless of disability.

A couple of questions for the more experienced:
He has recently decided he likes to open the windows and throw things out, stick his arm out, etc. Once, he climbed out. He's removed (ruined) most of the screens. I thought I was going crazy last week. I left to take the kids to school and the cat was outside. I came home, opened the door and the cat was sitting on the sofa. I shook my head and went to bed. Today, it dawned on me that he had probably left a window open. Soooo, what are the options? We could screw the windows shut, but I really hate to do that to my nice windows. Any other suggestions? I'm terrified he is going to wander off while we're sleeping.

One of you mentioned teaching your child to avoid cars/traffic. How did you teach him? This is one of my greatest fears b/c I do not think he realizes the danger of cars. We've tried the "stay out of the road" thing, but then the next thing we do is go for a walk down the road. Sort of confusing for my son.

Lastly, we DO the 24/7/365 thing for the most part (except for five mins here and there) and have all his life (well, except for the 45 minutes he was lost at a 250 acre water theme park..lol). What do you guys recommend we do to prepare our children so they don't require constant supervision? I'd love to give him the freedom other children enjoy, but I'm terrified...mortified at the thought of letting go.

I don't have an autistic child but I do work with Autistic children. We use ABA to replace unwanted behaviors and teach skills. I think you have to try to make your child as independent as possible, that is what every single parent should aspire for their child. You can't create a bubble for your child, he is going to have to be able to cope in an environment that is not "Autism Proof". What I would do if I was having a problem with a child that kept undressing at inappropriate times? I would first figure out why he is doing it, what reinforcement is he getting. Is that the only time he gets everyone's attention? Does everyone laugh? The first thing would be get rid of any reinforcement he is getting for the behavior. Ignore it! Just have him put his clothes without any reaction don't even say a word. Deny him access until he puts on his clothes. I would also reward him for times when he wasn't undressing. Maybe saying "Hey look at you, you have clothes on way to go buddy" and give him something (toy,cookie, tickle...). Make it so that the only time he would have access to that toy, cookie or tickle is when he is being praised for having clothes on. Start small, and stay committed. I have seen ABA work over and over again with those who were severly autistic and those who were advanced learners, I have seen different forms of treatment for Autism ( my least favorite being the food restrictions) but ABA is the best one.

Hope this helps!

[Spidey's mom]

All my kids loved to take their clothes off around toddler to preschool age. All my boys pee'd outside. My #2 son always figured out a way to get out of the house - he climbed up on the roof, he unlocked the backdoor at grandparents to get to the pool. My kids jumped from the roof onto the trampoline. They put the sprinkler on underneath it in the summer and jumped in the water. They dug a hole in the backyard and filled it with water and wallowed in the mud - we have great photos to prove it. My #2 son decided to paint the rocks in the backyard with a spray can of paint my dh uses for marking logs. My #1 son got out the front door when he was 18 months, walked down a staircase and over a bridge - this happened after I put him down for a nap and I was taking a bath. My neighbor fortunately was looking out her window and saw him leave and went after him and when she asked him where he was going, he said "I'm going to Reno to visit my Daddy". I was vacuuming my living room one day and a woman stopped by and knocked on the door and asked me if I knew my two boys were on my roof. I asked them what they were thinking and they said they just wanted to see the world from our roof. I talk to other parents all the time about the stuff our kids get into and we are all amazed that they make it out of childhood for the most part unscathed and I could go on and on with stories . . . .none of my kids is autistic, none of my friends kids are autistic. Have we changed the definition of normal?

Alot of this, imo, is normal behavior . . especially for boys.

Please, I don't want to make anyone mad and I realize you are only telling the tip of the iceberg but I sat here reading this and kept thinking "yeah, that could be any one of my kids".

steph

[mercyteapot]

Originally Posted by stevielynn

All my kids loved to take their clothes off around toddler to preschool age. All my boys pee'd outside. My #2 son always figured out a way to get out of the house - he climbed up on the roof, he unlocked the backdoor at grandparents to get to the pool. My kids jumped from the roof onto the trampoline. They put the sprinkler on underneath it in the summer and jumped in the water. They dug a hole in the backyard and filled it with water and wallowed in the mud - we have great photos to prove it. My #2 son decided to paint the rocks in the backyard with a spray can of paint my dh uses for marking logs. My #1 son got out the front door when he was 18 months, walked down a staircase and over a bridge - this happened after I put him down for a nap and I was taking a bath. My neighbor fortunately was looking out her window and saw him leave and went after him and when she asked him where he was going, he said "I'm going to Reno to visit my Daddy". I was vacuuming my living room one day and a woman stopped by and knocked on the door and asked me if I knew my two boys were on my roof. I asked them what they were thinking and they said they just wanted to see the world from our roof. I talk to other parents all the time about the stuff our kids get into and we are all amazed that they make it out of childhood for the most part unscathed and I could go on and on with stories . . . .none of my kids is autistic, none of my friends kids are autistic. Have we changed the definition of normal?

Alot of this, imo, is normal behavior . . especially for boys.

Please, I don't want to make anyone mad and I realize you are only telling the tip of the iceberg but I sat here reading this and kept thinking "yeah, that could be any one of my kids".

steph

I'm not sure I get what you're driving at here. The three categories of symptoms of autism are quantifiable impairment in communication and social interaction and rigid or repetitive behaviors. I don't understand why you think that what you're describing would qualify as possibly indicative of autism in the opinion of anyone familiar with the disorder. And no, we haven't changed the definition of normal. Nor have we changed the defintion of the word typical. My son may not be typical but he's as normal as anyone else. Autism hardly makes someone abnormal, unless we're going to start calling people with any and all conditions that, too.

[33-weeker]

If his speech is impared, why can't he get in under speech? In Texas, there are many Dx that qualify a kid for special ed services. Many preschoolers get in under 'speech' then go on later to get the Autism Dx. There's also OHI (other health impaired) that I think is kind of a catch-all for things that don't fit in other categories.

But I have to agree with one of the other posters... if his speech and social functioning are impaired, then autism should be considered.

As far as gifted, my son taught himself to read at the age of 4. I am struggling with the school to challenge him. They've held him back in PPCD during his kindergarten year due to agressive behavior. But he's bored academically, which may be part of the problem. He goes a couple of times a day to a regular pre-k class. They are trying to mainstream. If I didn't work full-time, I'd yank him out and home school him in a heartbeat!

It's never easy for us moms.