Autism - what do you think?

[auntpolly]

I have to leave, but I just wanted to say that this is one of the most heartbreaking things I know of and I pray for you all and for the answer.

It made me happy to hear the parents on Oprah talk about how much love they feel from their child and the blessings.

I hope I haven't offended anyone with this thread.

 

[isyne4u]

I have to leave, but I just wanted to say that this is one of the most heartbreaking things I know of and I pray for you all and for the answer.

It made me happy to hear the parents on Oprah talk about how much love they feel from their child and the blessings.

I hope I haven't offended anyone with this thread.

Nope not offended by the thread at all! I think that anything that helps people learn and understand what other people are going through is a good thing!!

 

[minkydog]

I didn't see the Oprah show yesterday. I don't think I missed much though.

My 9 year-old daughter is autistic. She has no verbal language. She's not yet continent. She often displays odd mannerism, like toe-walking, hand-flapping, and grimacing. She's loud. She can be self-abusive when she's frustrated.

She's also a 9 year-old girl. She's sweet and loves hugs and tickles. She has a goofy sense of humor, likes to run ahead and hold doors closed behind her. She likes to wear sparkly clothes or anything pink. She's learning the joys of turn taking and social interaction. She loves to draw and color. She uses sign and her own very expressive way to communicate with the world around her. She's sometimes too independent.
...
Yes, I am personally affected by autism and I will be until the day I die. I don't that drug companies have best interests in mind over their bottom lines.

I won't wish for her to be a normal bratty kid, but that's who she is and no amount of wishing is gonna change that. My greatest wish is to just once here my little girl say the words, "I love you, Mom." I'd trade every label, fad and trend in the world for that.

Your daughter is beautiful and your description of her so reminds me of my DS, Christian. They are beautiful people in their own right and we need to be reminded that their lives matter just as much as any "normal" person. If we are so lucky to be able to see the world through their eyes for a little while, how truly life-changing that would be.

 

[isyne4u]

Tara, there is some truth to the fad of having a kid with a 'diagnosis' of some sort though.

There might be some people that do this...but an overall broad sweeping brush to say it is a fad is bit much.

as debster812 said...I would gladly get rid of my fad child to have him be a neurotypical child...I love this child more than anything in the world (even more than Disney ) but when you cry about your child more than your child cries...there is a problem.

I'm a teacher...I have seen kids who may not be truly ADHD or some other thing but it is not my job to question their diagnosis and their doctors. I've learned to not judge other parents.

tara

 

[Rafiki Rafiki Rafiki]

Well, I made it through the first page of posts before posting.

My nephew is 10 and has pervasive developmental disorder, an autism spectrum disorder. My sister's life has been completely torn apart by it. Managing his life is tough enough; but navigating the medical, insurance, and state systems is MISERABLE for her. I can see how some parents just give up.

My best friend's son is 2 and is profoundly autistic. He has just now learned to walk and is, for the most part, completely non-communicative. My friend has given up her business because her medical insurance will not cover the majority of his treatments. Having state-paid care is the only way she can get him what he needs. She has studied and learned everything she can about treating him herself and has molded her life around his therapies. She takes him for three different appointments a week and works with him from 2-5 hours per day, just trying to help him learn to communicate. Meanwhile, her own health is suffering.

Life isn't so good for the two favorite women in my life. I think it's time we got serious about finding a cure.

 

[golfgal]

There might be some people that do this...but an overall broad sweeping brush to say it is a fad is bit much.

as debster812 said...I would gladly get rid of my fad child to have him be a neurotypical child...I love this child more than anything in the world (even more than Disney ) but when you cry about your child more than your child cries...there is a problem.

I'm a teacher...I have seen kids who may not be truly ADHD or some other thing but it is not my job to question their diagnosis and their doctors. I've learned to not judge other parents.

tara

The whole point of this is that there are kids using services that don't truly need them and plenty of kids that DO need the services that can't get them because they system is overloaded and THAT is what is really, really sad. I have to say that as a teacher it is most definitely your job to question these diagnoses in the sense that much of what physicians take into consideration is their behavior/actions in the classroom, not just acting out but how well they are doing with the tasks in the classroom. Also, as a teacher you do know that there is a major difference between a child that is unruly and one that is really ADHD. Again, in my experience with many, many parents these days is that they are looking for an excuse for their child's behavior instead of dealing with the real issues which usually boil down to either the child's personality or the parents themselves. Just look at the posts on these boards where parents want to blame everyone but their kid for not doing well in school, getting into trouble, making bad choices or whatever.

 

[freckles and boo]

I have to leave, but I just wanted to say that this is one of the most heartbreaking things I know of and I pray for you all and for the answer.

It made me happy to hear the parents on Oprah talk about how much love they feel from their child and the blessings.

I hope I haven't offended anyone with this thread.

I am not offended. I appreciate any attention brought to the subject and the opportunity to clear up some of the misconceptions. My child can only benefit from the greater awareness. Just be sure not to underestimate her or any child with autism. They deserve better. I am going to get on my soapbox for a minute...

April is Autism Awareness month but autism isn't going to go away in May. Please consider supporting legislation that will benefit these kids!

 

[Daxx]

Scientists speculate that there are from 5-20 genes responsible for Autism
Runs in families

Interesting!

 

[leighe]

The whole point of this is that there are kids using services that don't truly need them and plenty of kids that DO need the services that can't get them because they system is overloaded and THAT is what is really, really sad. I have to say that as a teacher it is most definitely your job to question these diagnoses in the sense that much of what physicians take into consideration is their behavior/actions in the classroom, not just acting out but how well they are doing with the tasks in the classroom. Also, as a teacher you do know that there is a major difference between a child that is unruly and one that is really ADHD. Again, in my experience with many, many parents these days is that they are looking for an excuse for their child's behavior instead of dealing with the real issues which usually boil down to either the child's personality or the parents themselves. Just look at the posts on these boards where parents want to blame everyone but their kid for not doing well in school, getting into trouble, making bad choices or whatever.

I totally agree. I have taught many, many children who are diagnosed with ADHD or ADD that are really just the products of poor parenting. It is sad because it cheapens that diagnosis and the services available for students who really do need them.

I'm undecided about the whole autism/vaccination issue. We have vaccinated DD 15 months and will do so for our new baby as well. I am not comfortable, however, just trusting drug companies to tell me that "No, vaccinations don't cause autism." Perhaps these new statistics will encourage people to maybe explore their family histories as they make decisions about vaccinations, etc.

 

[jann1033]

i have a friend whose 2 sons so fit what i have read/heard about ausbergers syndrome( sorry know i butchered the spelling) and it makes me sad because she has decided it is due to some kind of dietary need...these kids are suicidal( one i wonder if he isn't schizophrenic as well) and her solution is to have them eat blueberries no meds no drs...missed the oprah show but wonder if anyone can tell me about that syndrome...truthfully her whole family is a little quirky, has kids from a previous marriage who are just a little off socially( don't know how else to word it) as is she ( kind of obsessive about odd things, very picky about how things are done, routines etc, i love her but i can see how her personality could bother some people although she did lose her parents at an early age so maybe some is due to that as well) present husband ( boys father) is depressive but just not socially "normal". they are all nice people but it bothers me to see her boys ( well men since they are in their 20s now) having such a tough time with life when maybe something could be done to help them.
i understand autism isn't depression etc but i wonder how many of the kids like those above don't develop depression due to not "fitting in" or maybe these poor kids just got double whammy-ed genetically.

sorry i feel kind of crummy today and so didn't read all the preceding posts...if it was covered tell me an i'll wade through them to find it...thanks

 

[isyne4u]

The whole point of this is that there are kids using services that don't truly need them and plenty of kids that DO need the services that can't get them because they system is overloaded and THAT is what is really, really sad. I have to say that as a teacher it is most definitely your job to question these diagnoses in the sense that much of what physicians take into consideration is their behavior/actions in the classroom, not just acting out but how well they are doing with the tasks in the classroom. Also, as a teacher you do know that there is a major difference between a child that is unruly and one that is really ADHD. Again, in my experience with many, many parents these days is that they are looking for an excuse for their child's behavior instead of dealing with the real issues which usually boil down to either the child's personality or the parents themselves. Just look at the posts on these boards where parents want to blame everyone but their kid for not doing well in school, getting into trouble, making bad choices or whatever.

I don't question a diagnosis, I'm a teacher not a clincian. I might wonder about their diagnosis but the only way I might have towards a diagnosis is if a parent brings me a rating scale to fill out and then I will be completely honest and will not put something down that I do not feel is correct.

I have opinions on ADHD kids versus unruly kids...and I might think them or I might mention them to a collegue but I will, in no uncertain terms, will tell a parent my opinion. Even if a parent asks me if I think their child could be ADHD I will not tell them one way or another. I will tell them what I see day in and day out. I will provide anecdotal evidence of my observations. But I will not agree or disagree with a parent. Just as I wouldn't want a teacher to tell me that just because my child appears to behave in the classroom for the time that he is there, that my child was not HFA. They are not a clinician.

tara

 

[Daxx]

If immunizations cause autism, then why don't virtually all children who have received an immunization have autism?

I *think* what they mean is that the immunizations might be a trigger for Autism. For example, if you carry the predisposition for autism and are immunized, the belief is is that something in the immunization triggers something in your body that sets off the Autism. If you weren't immunized, the Austism wouldn't flare up. Likewise, if you don't have the predisposition for autism and are immunized, then you wouldn't have any problems w/the immunization causing autism. It might be that something in immunizations triggers the autism to start.

A coworker of mine swears that immunizations caused her son's autism (he's in his 30's now). She that when he was born, he was mentally challenged. So, was it the immunizations or part of his disabilities or a combination of the two!? I've never met her son so I can't really give you any more than what she's told us.

Another example, months after my Aunt got her first ever flu shot, she got really sick. She was diagnosed w/MS. She never experienced any MS related symptoms until after she received that flu shot. Her doctors think that something in the flu shot might have triggered the MS to flare up. It might have remained dormant if she never received the flu shot. Now ... notice the use of might. This is speculation on the doctor's part b/c they simply don't know what the trigger for her MS was. But, it did all start after that flu shot ... so go figure.

Anyway, the point is that it's the same idea w/immunizations and autism.

 

[freckles and boo]

i have a friend whose 2 sons so fit what i have read/heard about ausbergers syndrome( sorry know i butchered the spelling) and it makes me sad because she has decided it is due to some kind of dietary need...these kids are suicidal( one i wonder if he isn't schizophrenic as well) and her solution is to have them eat blueberries no meds no drs...missed the oprah show but wonder if anyone can tell me about that syndrome...truthfully her whole family is a little quirky, has kids from a previous marriage who are just a little off socially( don't know how else to word it) as is she ( kind of obsessive about odd things, very picky about how things are done, routines etc, i love her but i can see how her personality could bother some people although she did lose her parents at an early age so maybe some is due to that as well) present husband ( boys father) is depressive but just not socially "normal". they are all nice people but it bothers me to see her boys ( well men since they are in their 20s now) having such a tough time with life when maybe something could be done to help them.
i understand autism isn't depression etc but i wonder how many of the kids like those above don't develop depression due to not "fitting in" or maybe these poor kids just got double whammy-ed genetically.

sorry i feel kind of crummy today and so didn't read all the preceding posts...if it was covered tell me an i'll wade through them to find it...thanks

You didn't miss anything. Aspergers hasn't been specifically discussed yet on this thread and I don't recall it even being mentioned on Oprah. From my research (my daughter has high-functioning autism, but not Aspergers so I am not a pro!!!) most Aspie kids get to a point in/around their teens when they become very aware that they are different. For some (maybe most) it probably does cause some sadness or depression. There is no roadmap for these disorders so the mom trying dietary changes is not unusual. Most of us are willing to try anything that won't hurt our kids! Not seeing a doctor for depression, though, is not very wise. As much as I hope to never have to medicate my daughter for any reason, if the benefits outweigh the risks, I will consider it. Just be a good friend to her. She probably needs you very much.

 

[Lanshark]

Keep in mind, that without a formal diagnosis these families cannot get approval from insurance companies for appropriate treatments. Also without formal diagnosis, many times these families cannot get the appropriate educational services through the public school system.

I work in a private special needs school. We have ADHD kids, LD kids, a few Aspergers kids, and a class of HFA kids. These kids were unsuccessful in the public schools. The parents are paying thousands of dollars a year for schools that specialize in teaching kids with learning differences. Our kids are all considered moderate and we are very successful with them.

These are very real afflictions. Not all are diagnosised properly I'm sure. The earlier a Doctor can pick up on these issues the better chance a parent has to seek appropriate services and learn how to deal with the child and their needs. Getting a formal diagnosis also helps the educators that are working with the child better understand how to get through to them.

Parents with autistic children walk a very difficult path.

As far as my thoughts as to the increase:
1. Doctors are better able to spot indicators early in the child's life
2. Environmental issues

 

[ChrisnSteph]

Not only have vaccinations increased, but so have many other environmental factors. It could the diet of the mother (we eat a lot of processed food, more then we did 30 years ago) or medications she took, even once in her lifetime, it could be exposure to certain chemicals, gas fumes, new construction, sugar substitutes, the water we drink..the list is endlesss. I think there are far too many things that could possibly be the cause of Austism, and I'm not convinced that immunizations are it, though it seems like that's the most convenient thing to blame it on.

 

[Liberty Belle]

The largest studies that have been used to disprove the vaccine/autism link have not been funded by the "drug companies". They've been conducted by organizations like the UN (WHO), NIH, and similar governmental bodies around the world.

If you want to look at recent areas of scientific study that have actually shown promise at pointing to the likely causes, then you need to read the latest findings about the genetic causes of autism and the likely effect our society's delay in childrearing (the age of the father in particular seems to be a likely factor) may be playing. However, these promising findings aren't getting a lot of play on the Internet because people prefer to focus on external causes that can be laid at the feet of others.

Very well said.

 

[jodifla]

Here's what I think: A lot of people who are diagnosing autism in kids are not qualified to do so. You see this quite a bit in school systems, where the autism dragnet puts kids on the wrong path...and wrong treatments, with labels that are incorrect and will cause them serious harm. I once had a school psychologist try to diagnose my son WITHOUT HAVING SEEN HIM!

I belong to a late talkers board, and these parents are so frustrated by the schools. Schools now have put a lot of money into autism programs, so they try to put kids in there even if it is NOT the correct diagnosis. THAT'S what's jacking up the autism rates: WRONG DIAGNOSIS BY THE SCHOOL SYSTEMS!

It's what the whole show "House" is based on: differential diagnosis. Lots of language issues have overlapping symptoms. It takes a true clinician to be able to tell them apart.

I cringe when I read so many parents descriptions of their kids, who clearly don't sound autistic, but they've bought into the autism diagnosis. (Disclaimer: I do think parents know best for the most part. But I think some are sold a bill of goods.)

I have a DS who I just had diagnosed at a university hospital in another state know for it's exemplary work with children's language issues. I now have the right diagnosis, and I know how to move forward.

As a parent of a child with a language disability, I get tired of people trying to tell me my son is autistic because they read the symptoms on a cereal box, or saw an Oprah special.

 

[Liberty Belle]

Here's what I think: A lot of people who are diagnosing autism in kids are not qualified to do so. You see this quite a bit in school systems, where the autism dragnet puts kids on the wrong path...and wrong treatments, with labels that are incorrect and will cause them serious harm. I once had a school psychologist try to diagnose my son WITHOUT HAVING SEEN HIM!

I belong to a late talkers board, and these parents are so frustrated by the schools. Schools now have put a lot of money into autism programs, so they try to put kids in there even if it is NOT the correct diagnosis. THAT'S what's jacking up the autism rates: WRONG DIAGNOSIS BY THE SCHOOL SYSTEMS!

It's what the whole show "House" is based on: differential diagnosis. Lots of language issues have overlapping symptoms. It takes a true clinician to be able to tell them apart.

I cringe when I read so many parents descriptions of their kids, who clearly don't sound autistic, but they've bought into the autism diagnosis. (Disclaimer: I do think parents know best for the most part. But I think some are sold a bill of goods.)

I have a DS who I just had diagnosed at a university hospital in another state know for it's exemplary work with children's language issues. I now have the right diagnosis, and I know how to move forward.

As a parent of a child with a language disability, I get tired of people trying to tell me my son is autistic because they read the symptoms on a cereal box, or saw an Oprah special.

Who is doing the wrong diagnosing? If parents go through our school system to get their child evaluated, it must be done by a psychiatrist. Our school psychologist can not and will not diagnose them.

 

[KimR]

There is also another theory out there that too-frequent ultrasounds could be a contributing factor to the increase in autism. Apparently, there are higher rates of autims in developed countries where ultrasound is routine in pregnancy. Kind of scary.

 

[jodifla]

Who is doing the wrong diagnosing? If parents go through our school system to get their child evaluated, it must be done by a psychiatrist. Our school psychologist can not and will not diagnose them.

In lots of systems, it's the school psychologist.......and I'd be there are a fair amount of pyschiatrists who aren't really qualified as well....


Actually, I don't see anybody with a psychiatrist title anywhere on school staff in our local districts.....