OT: Did you see Jenny McCarthy on Oprah?

[J.C.&ALI'SMOM]

I just felt uneasy with the symptoms that Jenny was describing. I just thought a lot of the "early warning signs" also sound like normal behavior too. (hand flapping, putting toys in a row/line. I would hate to think that thousands of mothers got freaked out after watching the show.

I know a lot of kids that exhibit some of the "warning signs" ( my own included) and they are not autistic(thankfully). I know it more of the social, emotional/ lack of emotional signs that are more telling, but parents can be freaked out easily when hearing that kind of information..

When hand flapping and lining up cars etc become an 'early warning sign' is when they are done consistently and happen with other symptoms. I hope no parent would want to have their child eval'ed if they enjoy 'making a train' with their cars while they are playing.

BUT, if that is basically the only type of play that they exhibit, if they aren't doing any other kinds of play like pretending the car is driving along the floor, etc. Then it would be an early warning sign. If the child flaps his hands once or twice it would not be an early sign. If the child hand flaps when he/she is upset or excited and it occurs regularly, then it would be an early sign.

When behaviors like that occur with others like a language delay, delayed development in general, sensory issues, reduced motor skills, etc. Then parents should be concerned.

Autism is extremely varied in terms of symptoms and severity. One child will experience a completely different set of symptoms than another one. They are all different.

 

[luvsJack]

I do not have a child with autism, but reading this thread reminds me a lot of the discussions that went on when my DS(23) was in junior high about ADHD. And there were hundreds of different ideas out there about what was causing so many children to be ADHD. I am not comparing autims to ADHD, I don't know enough about autism, I am just comparing the discussions. Several of you gave the opinion that many children are being misdiagnosed with autism. My DS was diagnosed ADHD in 7th grade and was given two medications to take daily. His ped said he only showed slight symptoms as far as the hyperactivity, but he was having some anger control issues. The meds seemed to help. Now as an adult he has been told that he is not ADHD, he is bipolar, again not very severe. and now they want to give him different meds. I am afraid that neither diagnosis is correct, and that some of the problems he has had have come from his relationship problems with his dad (my ex). My point to all this is that there are a lot of misdiagnosis. There are children with autism, just like there are children with ADHD; but are we so sure that every child that is diagnosed now won't be re-diagnosed later?
As for as the vaccinations, my mom owned a child care center for several years; by state law she had to require that all children enrolled were vaccinated and within a few months of the schedule suggested by the state health dept. Have any of you that have decided to delay vaccines, or not have them at all, had problems having your children in child care or school? Not judging, just curious.

 

[sha_lyn]

DS used to be in Y-guides (YMCA version of scouts) yrs ago with an Autistic boy.
He didn't flap his hands when upset, he rocked. I've seem children who rock themselves for soothing (ie if they are tired) and the 2 look totally different.
While I understand what DVCJones is saying I believe that most parents can see the difference between "normal" behavior and behavior that is part of "disorder".
I guess the best example I can think if is the TV show Monk. There is a difference between liking this neat and orderly and not being able to function if things are not a certain way. There is a difference between having a quirky habit and not being able to move on to the next thing if the habit can not be completed.

 

[sha_lyn]

As for as the vaccinations, my mom owned a child care center for several years; by state law she had to require that all children enrolled were vaccinated and within a few months of the schedule suggested by the state health dept. Have any of you that have decided to delay vaccines, or not have them at all, had problems having your children in child care or school? Not judging, just curious.

I have a friend who's children are not vax'ed. They attend public school and have attended pre-K in daycare. In GA all you have to do is fill out a religious waiver.

I was actually planning on delaying some of 10 DD's shots a little longer (one of the hep shots for one) but she could not attend resident Girlscout camp without it. After researching I decided it was probably one of the least "dangerous" and went ahead and had her vax'ed so she could attend the camp.

 

[squirrlygirl]

It's a sexually transmitted disease,and the docs community wants to vax the next generation BEFORE they hit sexual maturity,aka in the hospital immediately after birth! IF parents aren't in a danger range,WHY put this into a newborns tiny underdeveloped immune system?

Sex is only one way that Hep B can be transmitted. Contact with bodily fluids can also transmit it. And what's scary is something like 30% of infected people have NO symptoms, so you cannot just avoid it-I think I read 1 in 20 Americans are infected.

 

[fakereadhed]

Sex is only one way that Hep B can be transmitted. Contact with bodily fluids can also transmit it. And what's scary is something like 30% of infected people have NO symptoms, so you cannot just avoid it-I think I read 1 in 20 Americans are infected.

Yes, it can be transmitted by getting blood into a cut. Doesn't that happen when kids play on the playground and get hurt? Or one child gets hurt and another helps? And it's much more easily transmitted than AIDS. Google HepB.

 

[jodifla]

IYHO

I work with children everyday who have ASD. I have seen some children who's diagnosis was incorrect in terms of severity, not incorrect as far as what the diagnosis is.

Amyhughes described her child as having episodes of staring. I would check with a neurologist on that sympton alone. What if it is related to seizures? When you have a group of symptoms occurring at the same time, it brings up a red flag. The consistent hand flapping is not a behavior that occurs in normal development.

You seem to thing it is dangerous for me to recommend that she has her child evaluated so she will know for sure what these behaviors mean and what she can do. I think it is dangerous to wait and postpone evaluations. Early intervention is key in helping preschool age children who have developmental problems.

Really, its true. I see it every day. People who listen to peds who say "He'll talk when he wants to." "don't worry so much" when their child could be getting services that will make a real difference in their ability to function.

But hey, that is just my educated opinion.

No, I think it's dangerous to have your child evaluated by people who really don't know what they are doing and unfortunately, there are lots of people like that out there.

They don't truly understand the DSM criteria, they don't spend enough time with the kids, they frankly just don't understand what true autism is.

Many of the parents I know who got railroaded by the horrible school systems simply pulled their kids out of school to homeschool them. It was the only way to break the stranglehold if an inaccurate "educational diagnosis" of autism.

Let's take hand-flapping, shall we? Lots of little kids flap their hands when they are excited. As their language comes in, the hand flapping tends to fade away. But when you don't have a lot of language, as in kids with expressive/receptive language disorders, one of the ways you have to joy real excitement is physical....like jumping up and down and flapping your arms.

There's a difference between flapping your arms when excited, and flapping as a perserveriatng behavior. Trained clinicians can tell the difference. Many people involved in the school system, or other "professionals" who see everything through the lens of autism, cannot.

I don't think anyone is arguing against speech therapy for kids who need help with language. But language therapy is what many of these kids need, NOT an inaccurate autism label, with all its accompanying treatments that ARE NOT APPROPRIATE for expressive/receptive language delay.

 

[J.C.&ALI'SMOM]

No, I think it's dangerous to have your child evaluated by people who really don't know what they are doing and unfortunately, there are lots of people like that out there.

They don't truly understand the DSM criteria, they don't spend enough time with the kids, they frankly just don't understand what true autism is.

Many of the parents I know who got railroaded by the horrible school systems simply pulled their kids out of school to homeschool them. It was the only way to break the stranglehold if an inaccurate "educational diagnosis" of autism.

Let's take hand-flapping, shall we? Lots of little kids flap their hands when they are excited. As their language comes in, the hand flapping tends to fade away. But when you don't have a lot of language, as in kids with expressive/receptive language disorders, one of the ways you have to joy real excitement is physical....like jumping up and down and flapping your arms.

There's a difference between flapping your arms when excited, and flapping as a perserveriatng behavior. Trained clinicians can tell the difference. Many people involved in the school system, or other "professionals" who see everything through the lens of autism, cannot.

I don't think anyone is arguing against speech therapy for kids who need help with language. But language therapy is what many of these kids need, NOT an inaccurate autism label, with all its accompanying treatments that ARE NOT APPROPRIATE for expressive/receptive language delay.

I'm sure it is "dangerous to have your child evaluated by people who really don't know what they are doing" but how do you know that any particular diagnostic team will not know what they are doing???

Usually children from our area go to a child specialty clinic where a team of specialists evaluate them, or to UVA's Kluge Center. These clinics are staffed by well educated professionals who have seen children from all walks of life with any number of difficulties.

If people decide to find out more about their child's delays they should make sure that they go to a reputable clinic and not rely on one person to evaluate their child.

The clear and blatant truth is that there are more children who have autism. When I first started working there were very few children who had the disorder and now there are many. I am not talking about kids who are mildly affected, I am speaking of children who obviously have autism, it is undeniable. The numbers have increased.

Our school system must be very different than what you have experienced and you have obviously had some terrible situations to deal with. I have never encountered parents who have been railroaded into anything. We have never had a child who was diagnosed by anyone in our school system, we don't do that. We have never had a child diagnosed and a parent not believe the diagnosis.

Knowledge about your child's abilities and areas of concern is important. Doing the best that we can for children is our job.

 

[Minniemouse07]

As for as the vaccinations, my mom owned a child care center for several years; by state law she had to require that all children enrolled were vaccinated and within a few months of the schedule suggested by the state health dept. Have any of you that have decided to delay vaccines, or not have them at all, had problems having your children in child care or school? Not judging, just curious.

Not true.. most public day cares are governed by the same rules as public schools. All we had to do is submit a letter of exemption... no questions asked. The director told me that as long as they have the vaccination records OR a letter of exemption... they meet all state requirements. If a day care provider tells you differently they just don't understand the guidelines.

 

[rie'smom]

I do not have a child with autism, but reading this thread reminds me a lot of the discussions that went on when my DS(23) was in junior high about ADHD. And there were hundreds of different ideas out there about what was causing so many children to be ADHD. I am not comparing autims to ADHD, I don't know enough about autism, I am just comparing the discussions. Several of you gave the opinion that many children are being misdiagnosed with autism. My DS was diagnosed ADHD in 7th grade and was given two medications to take daily. His ped said he only showed slight symptoms as far as the hyperactivity, but he was having some anger control issues. The meds seemed to help. Now as an adult he has been told that he is not ADHD, he is bipolar, again not very severe. and now they want to give him different meds. I am afraid that neither diagnosis is correct, and that some of the problems he has had have come from his relationship problems with his dad (my ex). My point to all this is that there are a lot of misdiagnosis. There are children with autism, just like there are children with ADHD; but are we so sure that every child that is diagnosed now won't be re-diagnosed later?
As for as the vaccinations, my mom owned a child care center for several years; by state law she had to require that all children enrolled were vaccinated and within a few months of the schedule suggested by the state health dept. Have any of you that have decided to delay vaccines, or not have them at all, had problems having your children in child care or school? Not judging, just curious.

I would go to a different doctor and not mention the Bipolar diagnosis. A few years ago, I fell into a deep depression and they automatically wanted to pin a bipolar diagnosis on me. Well, I knew that I didn't have the mood swings that people with Bipolar have, so I refused to accept their opinion. I went to another doctor who diagnosed low thyroid!!!! Ever since I've been on Armour thyroid, the depression for the most part has been in check. Bipolar is the flavor of the month with psych doctors. IMO,most of them are full of poop and nuttier than their patients.

 

[KirstenB]

I'm sure it is "dangerous to have your child evaluated by people who really don't know what they are doing" but how do you know that any particular diagnostic team will not know what they are doing???

Usually children from our area go to a child specialty clinic where a team of specialists evaluate them, or to UVA's Kluge Center. These clinics are staffed by well educated professionals who have seen children from all walks of life with any number of difficulties.

If people decide to find out more about their child's delays they should make sure that they go to a reputable clinic and not rely on one person to evaluate their child.

The clear and blatant truth is that there are more children who have autism. When I first started working there were very few children who had the disorder and now there are many. I am not talking about kids who are mildly affected, I am speaking of children who obviously have autism, it is undeniable. The numbers have increased.

Our school system must be very different than what you have experienced and you have obviously had some terrible situations to deal with. I have never encountered parents who have been railroaded into anything. We have never had a child who was diagnosed by anyone in our school system, we don't do that. We have never had a child diagnosed and a parent not believe the diagnosis.

Knowledge about your child's abilities and areas of concern is important. Doing the best that we can for children is our job.

Our 2 yr old was dx'd with ASD at UVA/Kluge Center, small world! Her speech and OT therapists have said she's not autistic, so we'll wait and see. In the meantime, she does receive therapies for her delays. IN addition, I've read books on Floortime as an autism therapy, and I do that with her a few times a day. It is NOT a controversial therapy at all, and if she's not autistic, I see no downside to this therapy. I'd rather have her get too much help, than not enough, KWIM?

Our teachers in the public school system aren't allowed to make ANY diagnoses or treatment recommendations. (I know this because our older dd has always had focus problems in school. Her teachers always hinted around at pursuing it, but I wasn't even sure where to start. Finally, a teacher friend of mine said, "look, as teachers, they arent' allowed to say anything to you, but if she were my dd, I might take her to a child psychologist for an ADD eval".).

So our school system seems to be very limited in what they're allowed to say to parents, let alone label kids.

 

[J.C.&ALI'SMOM]

It is NOT a controversial therapy at all, and if she's not autistic, I see no downside to this therapy. I'd rather have her get too much help, than not enough, KWIM?

Our teachers in the public school system aren't allowed to make ANY diagnoses or treatment recommendations. (I know this because our older dd has always had focus problems in school. Her teachers always hinted around at pursuing it, but I wasn't even sure where to start. Finally, a teacher friend of mine said, "look, as teachers, they arent' allowed to say anything to you, but if she were my dd, I might take her to a child psychologist for an ADD eval".).

So our school system seems to be very limited in what they're allowed to say to parents, let alone label kids.

I know what you mean. Isn't it better to get more? If she is not, the things you are doing can't hurt, only help.

I guess there are some school systems out there that are truly terrible, but ours is really not bad.

 

[jodifla]

I know what you mean. Isn't it better to get more? If she is not, the things you are doing can't hurt, only help.

I guess there are some school systems out there that are truly terrible, but ours is really not bad.

Floortime is not a controversial treatment. Others are.

 

[brergnat]

All I want to add to this discussion is the following:

Autism as a "label" is not always a bad thing. That "label" qualifies you for GOVERNMENT FUNDED services, which are invaluable in the early years of your child's life! My son who just turned 3 is attending a district special education preschool 3 days/week at NO COST TO ME that is one of the best in the country, all because we were "willing" to label him as Autistic at 29 months. We know he is autistic, but to be completely honest with you, strangers who meet him on the street would NEVER guess it! He is very high functioning, extremely intelligent, and his motor skills and general behavior are very advanced for his age. He has communication/social interaction difficulties, and some difficult (OCD type) behavior at home that we have to deal with, but in general, he is an easy going, bright, lovable kid. I don't care that he has a label. That label is who he is, and I wouldn't change him if I could. That label is the reason why I get some time off a few days a week! That label is the reason why he's received LIFE CHANGING therapy since he was 19 months old!

Too many people, in my opinion, are scared of labels, but you can be scared all you want, and you can avoid it all you want, but in the end, if your child has a disorder, all the denial in the world is not going to change that.

As parents, it is our job to do what is in the best interest for our CHILDREN, not ourselves. Too many adults don't want the stigma of an autistic child and that's a damn shame. The kids suffer for that.

No good comes from delaying a diagnosis of ANY type of developmental disability. The overwhelming evidence (and my own two children are proof of this enough for me) is that EARLY INTERVENTION is key to helping a child reach their highest potential and can actually change the course of their entire lives. Isn't that enough of a reason to have a child evaluated even if there is just an inkling that something may not be right?

After having one child diagnosed with autism, you can believe I was all over recommendation to have my little 15 month old baby evaluated SIMPLY because he had not yet started using words. THERE WERE NO OTHER CONCERNS with him, but what is to be gained by refusing a FREE developmental evaluation and therapy? If it turns out my youngest JUST has a speech delay, is there any harm in the 10 hours/week of play therapy he is receiving? Hell no!

 

[hoosiergirl7]

We split them up because of the potential risks. And he didn't start his Hep B series until he was 1 yr old. The other reason we split them up was because he is adopted and although we know his birth mother we don't know extensive medical history of the family and wanted to be on the safe side. I was really ticked off when we took him for his 1 yr immunizations and they gave him the Chicken Pox vaccine without my consent. When DS had his shots, he had to get stuck either 3 different times for the DTap, HIB & IPV because we were not doing the Hep B series yet. If we did it would've all been just 1 vaccination. And then I know he had more shots after that including the MMR at 12 months but we wanted to be super cautions.

My DH's cousin just found out his son has autism but he doesn't have a severe form. I can't remember what she said exactly on the phone last week other than when you ask him to do a simple task, his brain hears it, but can't process the information and he has no creative spark either. In short it's a very mild case of autism and for that she is thankful. Her younger son is fine.

I know lots of people including the people who worked at the immunization clinic that balked when we said we were not doing the Hep B and were spacing our shots. They looked at us like we were aliens but I'd never do it differently. Even the next time we add to our family through adoption I will do the same again.

What's interesting is how many children now have Autism. I'd love to know why the numbers have increased so much or if it was just never diagnosed before.

 

[LauraAnn630]

I havent had a chance to read the whole thread yet.

I am very surprised to find out doctors are giving autistic children the same drugs as they give adults with bi polar!

Do they think its connected?

Ill be truthful, I have bi polar. I knew for years before I was diagnosed with it. Doctors tried to tell me I had ADD!!


You have to be your own doctor. You know whats going on with your child or self. If you dont agree with a doctors diagnosis you HAVE to find another doctor.

So I feel AWFUL for these children that cant verblize how they feel on these meds. Some meds make you feel terrible and worse than before.

 

[Foohound]

I almost did not reply to this thread because I have mixed emotions on this subject.

My DD6 was given a DX of Austism and spectrum disorders at age 3. She is doing very well and has multiple therapies a week.

That being said, do I blame vaccines? No, my DD did receive all of her shots as scheduled. She had no adverse reactions to any of her shots. She did have a slower progression after age 18months. You can see the change in many of her baby pictures.

I believe this is genetic and I do believe that one day we will find out what causes this genetic defect on our children. My sister is ADD, My niece is ADD and my nephew has PDD.

As of now we have no indications as to which child will have this pre-dispostion to austim, but I hope for my families sake they one day will.

 

[xoprincessmomxo]

I was very happy to see Jenny McCarthy come out on live tv to talk about her son's diagnosis. So many people in the spotlight want everyone else to believe that they are living a fairytale life, when in actuality they are just people who happen to have a really cool job and a family at home to take care of after work. Anything to bring awareness to a disease that affects our children. The more awareness, the more funding for a cure. It is sad that we have to fight for money for researching diseases, when there is SO MUCH government waste! (sorry, a pet peeve of mine)

Anyway, my thoughts on her controvertial therapy and diagnosis: While my daughters have developed normally, my first was given her vaccinations on schedule with no adverse reactions. My second, we are weighing the options. So far, we have delayed her vacs until we make an informed decision. She has gotten some so does have a little protection. Personally, it scares me both ways. For one, I feel that the vaccines have an element of hidden danger. Like we as parents have been kept in the dark. It's just something that you do and if you don't, everyone around you will think you are crazy and a bad mother. But, on the other hand....those diseases that they protect against are making a resurgence, and I would never ever forgive myself if I didn't protect my baby and she got sick.
With her idea of the gluten free diet: More power to a mom that was willing to seek out her own way of dealing with her son. While some people may think it is just a whack theory, it's better than NOTHING! And there is no harm in trying anything to make your child better. I would go to the ends of the earth to help my child. I believe that a lot of the problems with children these days is food. We are loading our children up with chemicals and addidtives that generations past would not even be able to pronounce. Heck, I can't pronounce most of them. And we wonder what could possibly be wrong with our children as we shovel down some more boxed mac and cheese.

 

[jodifla]

All I want to add to this discussion is the following:

Autism as a "label" is not always a bad thing. That "label" qualifies you for GOVERNMENT FUNDED services, which are invaluable in the early years of your child's life! My son who just turned 3 is attending a district special education preschool 3 days/week at NO COST TO ME that is one of the best in the country, all because we were "willing" to label him as Autistic at 29 months. We know he is autistic, but to be completely honest with you, strangers who meet him on the street would NEVER guess it! He is very high functioning, extremely intelligent, and his motor skills and general behavior are very advanced for his age. He has communication/social interaction difficulties, and some difficult (OCD type) behavior at home that we have to deal with, but in general, he is an easy going, bright, lovable kid. I don't care that he has a label. That label is who he is, and I wouldn't change him if I could. That label is the reason why I get some time off a few days a week! That label is the reason why he's received LIFE CHANGING therapy since he was 19 months old!

Too many people, in my opinion, are scared of labels, but you can be scared all you want, and you can avoid it all you want, but in the end, if your child has a disorder, all the denial in the world is not going to change that.

As parents, it is our job to do what is in the best interest for our CHILDREN, not ourselves. Too many adults don't want the stigma of an autistic child and that's a damn shame. The kids suffer for that.

No good comes from delaying a diagnosis of ANY type of developmental disability. The overwhelming evidence (and my own two children are proof of this enough for me) is that EARLY INTERVENTION is key to helping a child reach their highest potential and can actually change the course of their entire lives. Isn't that enough of a reason to have a child evaluated even if there is just an inkling that something may not be right?

After having one child diagnosed with autism, you can believe I was all over recommendation to have my little 15 month old baby evaluated SIMPLY because he had not yet started using words. THERE WERE NO OTHER CONCERNS with him, but what is to be gained by refusing a FREE developmental evaluation and therapy? If it turns out my youngest JUST has a speech delay, is there any harm in the 10 hours/week of play therapy he is receiving? Hell no!

If you feel your child is autistic, then absolutely, early intervention and appropriate therapies are key.

However, if that's NOT the right label, then you are often spending valuable therapy time on things they don't need.

Lots of schools bully parents into accepting a label at a young age. Truth is , you can get all the therapy without any labels before age 5. As long as they have a significant delay in performance, you can get the free therapies.

My son has been in therapy since he was 2. I didn't put off any early intervention. But neither did I blindly accept strategies that various schools offered. I made sure they were the right fit for my kid.

My DS has a serious, serious speech delay. So we need to focus on speech and getting him up to speed. We don't need to be sidetracked with unneccessary therapies.

We have many kids on our late talkers board who are labeled as mentally retarded in addition to autistic, when actually they just can't understand the verbal IQ tests. Switch the test to a visual IQ test, and they score average up to genius status.

Parents need to be educated, and NOT ACCEPT labels they know in their hearts not to be true about their kids just for free therapy.

Because sticking your non-autistic child in a totally separate autistic program that many schools have for K on up COULD BE DEVASTATING FOR YOUR CHILD.

You have done your homework and are happy with your children's situation. That's great!

But I see too many parents just accepting what schools say about their kids, without doing any research on their own.

And floortime is a play therapy used for a few different disabilities. It's appropriate for autism and speech therapy.

 

[KirstenB]

Jodi, does your son do sign language or PECS? Our dd is only 2, so I don't want to compare our kids too much. Our dd will say "bye", then not say it for 2 mths. This is very typical for her...use a word once, then it goes away for weeks or months. (She only has a very few words in the first place, and she doesn't use any of them with consistency. She can go days without speaking at all). But once we started signing with her, we saw a difference.

She DOES sign everyday, with consistency and purpose, the same words. It's encouraging, because at least it shows me she understands communication, and has the intent and motivation. This is what I want her to do with speech. But, I'll take this in the meantime!