Autism - what do you think?

[jodifla]

What?! How can a school or teacher declare a kid autistic? Sorry, but I just don't buy that. Teachers here can't even suggest a kid be tested for anything (add, adhd, autism, LDs, etc). The most teachers can say is that maybe the child should see his doctor.

I guess it works different ways in different systems then. What are you basing your information on. Have YOU been through the system?

Basically, how it was going to work for my son, who was in a PRESCHOOL EI program: The school psychologist was going to observe him, and make her declaration! I opted out of the testing and pulled him from that school system.

 

[msgrimm23]

i have been working with autistic children for 10 years and love it they brighten up my day.

 

[jodifla]

What?! How can a school or teacher declare a kid autistic? Sorry, but I just don't buy that. Teachers here can't even suggest a kid be tested for anything (add, adhd, autism, LDs, etc). The most teachers can say is that maybe the child should see his doctor.

Have you actually experienced this first hand?

I have. And there was going to be no doctors involved in the school system where my son was in a preschool EI program. The school psychologist was going to observe him, and make her declaration. This is after the evil teacher kept pushing, pushing, pushing for an autism placement. I pulled him out of the school, and am now considering action against the teacher.

IT DOES HAPPEN! Been there, seen that, lived to tell the tale.

 

[barkley]

I agree. I think it is far more complicated than just Factor X resulted in Y.

I think that when it is all said and done, they are going to find that it is a host of things including genetic predisposition, environmental factors, the vaccinations, and probably things that haven't even come to light yet.
I'm not a scientist and I'm not a Doctor, so I don't know.

And as far as "diagnosis shopping" nearly every parent I know who does that is doing it so that they can get the schools and health insurace companies to agree to provide needed therapies for their kids. You have to get that "Significant Developmental Delay" box on the IEP form checked before you can get Occupational Therapy..... etc etc etc

They aren't doing it just to be trendy. As a mother of two IEP kids, it kind of bothers me to see others throwing that out there. My kids have very real issues that majorly affect their lives and our families lives. I don't enjoy IEP meetings, I don't enjoy Doctors visits, I don't enjoy 2 hours a week at the Speech Therapist -- I don't enjoy any of it and I'd give anything not to have to go through it.

not to insult-but i and many parents i know don't enjoy the multiple appointments, therapies, treatments... (and uncovered/unreimbursed costs) our adhd/autistic/dd children have either-but 'diagnosis shopping' based on our needs, wants or desires for insurance companies or the public schools to cover or compensate what we believe to be our childrens needs is rarely if ever a consideration. myself and many other parents of special needs kids have subjected ourselves to personal loss including but not limited to divorce, bankruptcy and such that when we received what we (but not our insurance companies and public school districts) have recieved/percieved as professional and accruate diagnosis and treatment plans we did not pursue further diagnosis in order to ensure reimbursed/free of charge teatment for fear of delaying treatment.

 

[#1MMFan]

My own non-professional opinion is that it is not related to immunisation; I haven't read the research paper that ruled it out (in The Lancet) but I gather that there is co-incidental timing with the vaccination and the subsequent presentation. I reckon there is probably an increase in awareness of autism and autistic spectrum disorders leading to some increase in diagnosis.
Over here the drug companies are not in control. Professionals do the research and the seriously credible research should not be/is not funded by drug companies. As doctors go over here go, we make our own decisions based on looking at the quality and strength of the research; we don't just take what's written on paper as gospel. We also get taught how to critique research in order to facilitate this. Sorry, a bit of a departure from the topic!!!

 

[JerseyJanice]

Uh, where do you get your facts from? The EI preschool system IS RUN BY THE SCHOOL SYSTEM!

And many school systems have criteria of their own for declaring someone "austistic." Even if the child has never seen a doctor. They'll tell the parents, "Oh, this is for educational purposes only."

Happens time and time and time again.

And where do you get your facts from?

Just because something happened with your child in Florida, it doesn't mean there are thousands of children all over the U.S. who had the exact same thing happen to them.

One could presume that if a serious diagnosis like autism were made about a child, that child would be eligible for medical therapies (e.g., psychotherapy or prescription medication). If the child were diagnosed with a severe of form autism (e.g, is non-verbal), his or her parents would surely apply for that child to receive SSI.

I find it impossible to believe that health insurance companies and Social Security are making payments for patients based on the diagnoses of public school committees that don't include even a physician's report.

People need to be aware that autism is now an epidemic. If it hasn't effected you directly yet, whether as a patient, family member, friend or neighbor, it will effect you one day as a taxpayer.

Every citizen of this country is entitled to a free and appropriate public education. What it's going to wind up costing all of us to educate and care for one autistic citizen out of every 150 in this country is staggering to even imagine. Even if you presume that higher-functioning autistic patients will become self-sufficient in adulthood, the financial implications of such high autism rates are daunting.


Worse, there's no reason at this point to think that number won't climb higher.

It is truly a daunting epidemic.

 

[PaulaSue]

I know 2 children with it.

I don't believe that the shots are to blame.

 

[Liberty Belle]

I guess it works different ways in different systems then. What are you basing your information on. Have YOU been through the system?

Basically, how it was going to work for my son, who was in a PRESCHOOL EI program: The school psychologist was going to observe him, and make her declaration! I opted out of the testing and pulled him from that school system.

No, but I am a para educator who works with kids with special needs, including autistic kids. I'm basing what I say on what we have been told by the superintendent.

 

[freckles and boo]

I am grateful autism is getting attention and I would hate to see this thread head in an ugly direction. Clearly from what she has posted on this thread and many others Jodifla has had bad experiences and so have people she communicates with on late-talkers boards. She makes this point repeatedly and sometimes angrily on autism threads and won't be swayed, so arguing is pointless. I am glad she is getting the services she feels her child needs and I am doing the same for mine. I hope we can change the subject or move on to more productive conversations. Why there are so many kids being diagnosed is important, but we need to find ways to help the kids that are out there function better in this world and be more welcome in it.

 

[isyne4u]

not to insult-but i and many parents i know don't enjoy the multiple appointments, therapies, treatments... (and uncovered/unreimbursed costs) our adhd/autistic/dd children have either-but 'diagnosis shopping' based on our needs, wants or desires for insurance companies or the public schools to cover or compensate what we believe to be our childrens needs is rarely if ever a consideration. myself and many other parents of special needs kids have subjected ourselves to personal loss including but not limited to divorce, bankruptcy and such that when we received what we (but not our insurance companies and public school districts) have recieved/percieved as professional and accruate diagnosis and treatment plans we did not pursue further diagnosis in order to ensure reimbursed/free of charge teatment for fear of delaying treatment.

AMEN!!!!

 

[HayGan]

I agree. I think it is far more complicated than just Factor X resulted in Y.

I think that when it is all said and done, they are going to find that it is a host of things including genetic predisposition, environmental factors, the vaccinations, and probably things that haven't even come to light yet.
I'm not a scientist and I'm not a Doctor, so I don't know.

And as far as "diagnosis shopping" nearly every parent I know who does that is doing it so that they can get the schools and health insurace companies to agree to provide needed therapies for their kids. You have to get that "Significant Developmental Delay" box on the IEP form checked before you can get Occupational Therapy..... etc etc etc

They aren't doing it just to be trendy. As a mother of two IEP kids, it kind of bothers me to see others throwing that out there. My kids have very real issues that majorly affect their lives and our families lives. I don't enjoy IEP meetings, I don't enjoy Doctors visits, I don't enjoy 2 hours a week at the Speech Therapist -- I don't enjoy any of it and I'd give anything not to have to go through it.

As the mother of an autistic child, I couldn't agree more! I firmly believe that my son's autism is a result of genetics as well as environmental factors (vaccines in particular that acted as a trigger.) I will never know what caused it. I wish that they could come up with more information as to the cause so that future children don't have to face the same challenges that so many are faced with today.

Trust me, I would want nothing more than not to have to take my son to speech therapy, numerous evaluations, etc. that we have to do on a regular basis. Not mention that I would love for him to be in a classroom without a full-time aide because he has difficulty in communicating and interacting with others in the class.

He is the sweetest kid in the world and it just breaks my heart that he has to struggle so hard with things that come so easily to others. I wonder everyday what his life is going to be like. All I can do is continue to give him all the love and support in the world and fight like heck to get him what ever help he needs to find his way in this world.

 

[belle&beast]

I can shed some light on how a diagnosis is made where I work in the public preschool setting. First a child is referred for testing either by the doctor or parent and the parent signs permission to test only after they are made aware of all of their legal rights. If we are looking into an autism diagnosis, the parent signs permission for autism rating scales as well as the typical speech/language, psychoeducational testing completed by a school psychologist, OT/ sensory testing, and PT if requested. The parent knows these scales will be used and participates in the ratings. Many times parents do not want the autism rating scales completed, and therefore they are not done. In my experience, parents are truly vital members of the evaluation team and their opinions are very highly regarded. When a child is nonverbal or speaks very little, we rely upon parents for information. The team them reconvenes to discuss the findings of the evaluations and to develop and IEP. The psychologist can offer the diagnosis of autism if the rating scales are showing those results. Parents can refuse this diagnosis if they choose. In that case, children under the age of 5 can have a dx of developmental delay. This will allow them to receive special services such as: resource, speech, OT, PT or any combination, until they are 5. When they turn 5, the label no longer applies and testing will need to be completed again to determine eligibility for services. Many times kids will no longer need so many services when they enter kindergarten, and others will always need them.

I think that our process works well and the children and families are being served. I have to say that we work very closely with families when kids are in the preschool setting and I wouldn't want it any other way. The bottom line is that whether or not we have a label of autism, we try to be sure all kids who need the services are receiving the services they need.

 

[jodifla]

And where do you get your facts from?

Just because something happened with your child in Florida, it doesn't mean there are thousands of children all over the U.S. who had the exact same thing happen to them.

One could presume that if a serious diagnosis like autism were made about a child, that child would be eligible for medical therapies (e.g., psychotherapy or prescription medication). If the child were diagnosed with a severe of form autism (e.g, is non-verbal), his or her parents would surely apply for that child to receive SSI.

I find it impossible to believe that health insurance companies and Social Security are making payments for patients based on the diagnoses of public school committees that don't include even a physician's report.

I belong to a late talker's board on yahoo, and parent after parent there tells the same story. School personnel push an autism diagnosis on parents to enable their kids to get services through the schools, even though the label shouldn't be needed to get kids aid.

I have personal friends who had children who were initially labeled autistic/asperger's by the school system, only to have the label changed later.

You are mixing up the school services with medical services. They aren't really connected. Of course the state or insurance companies don't pay money unless it's a medical diagnosis, but that's a separate animal from the school sytem services.

Some states pay for autistic services, but most parents pay out of pocket for treatments UNLESS it's delivered by the school system. Many insurances don't cover ANY services for autistic children.

There is no "medicine" for autism. Kids don't get pyschotherapy for it, although some states are covering ABA, which is very intensive therapy.

My point is that it's all a lot more complex than an Oprah show.

 

[jodifla]

I can shed some light on how a diagnosis is made where I work in the public preschool setting. First a child is referred for testing either by the doctor or parent and the parent signs permission to test only after they are made aware of all of their legal rights. If we are looking into an autism diagnosis, the parent signs permission for autism rating scales as well as the typical speech/language, psychoeducational testing completed by a school psychologist, OT/ sensory testing, and PT if requested. The parent knows these scales will be used and participates in the ratings. Many times parents do not want the autism rating scales completed, and therefore they are not done. In my experience, parents are truly vital members of the evaluation team and their opinions are very highly regarded. When a child is nonverbal or speaks very little, we rely upon parents for information. The team them reconvenes to discuss the findings of the evaluations and to develop and IEP. The psychologist can offer the diagnosis of autism if the rating scales are showing those results. Parents can refuse this diagnosis if they choose. In that case, children under the age of 5 can have a dx of developmental delay. This will allow them to receive special services such as: resource, speech, OT, PT or any combination, until they are 5. When they turn 5, the label no longer applies and testing will need to be completed again to determine eligibility for services. Many times kids will no longer need so many services when they enter kindergarten, and others will always need them.

I think that our process works well and the children and families are being served. I have to say that we work very closely with families when kids are in the preschool setting and I wouldn't want it any other way. The bottom line is that whether or not we have a label of autism, we try to be sure all kids who need the services are receiving the services they need.

Thank you for proving my point!

So basically, it's autism diagnosis by committee checklist. Led up by a school psychologist who may, or may not be, qualified to make the diagnosis.

I'm glad you're satisfied with the process. Perhaps in your school district it works well.

Unfortunately, most school personnel don't have the background and training to discern a differential diagnosis, so lots of kids are being sent down the wrong path.

 

[belle&beast]

As someone who is "school personnel" I can assure you that the diagnosis of autism is not taken lightly and is not pushed on parents in my district. Parents are active in developing a plan for their children and that includes the area of eligibility for services. I agree that insurance companies need to provide therapies for all children who need them.

 

[jodifla]

I am grateful autism is getting attention and I would hate to see this thread head in an ugly direction. Clearly from what she has posted on this thread and many others Jodifla has had bad experiences and so have people she communicates with on late-talkers boards. She makes this point repeatedly and sometimes angrily on autism threads and won't be swayed, so arguing is pointless. I am glad she is getting the services she feels her child needs and I am doing the same for mine. I hope we can change the subject or move on to more productive conversations. Why there are so many kids being diagnosed is important, but we need to find ways to help the kids that are out there function better in this world and be more welcome in it.

The title of the thread is "autism: what do you think" so I hardly feel it's OT.

It may not be what some people want to hear, but it's on topic.

I'm not saying there are no autistic children, certainly, or that they don't deserve all the services they need, so I don't see how my responses are at cross-purposes to other parents of special needs kids.

 

[jodifla]

As someone who is "school personnel" I can assure you that the diagnosis of autism is not taken lightly and is not pushed on parents in my district. Parents are active in developing a plan for their children and that includes the area of eligibility for services. I agree that insurance companies need to provide therapies for all children who need them.

This is great to hear! I'm sure there must be some school districts out there who are on the ball and doing things correctly.

 

[belle&beast]

Thank you for proving my point!

So basically, it's autism diagnosis by committee checklist. Led up by a school psychologist who may, or may not be, qualified to make the diagnosis.

I'm glad you're satisfied with the process. Perhaps in your school district it works well.

Unfortunately, most school personnel don't have the background and training to discern a differential diagnosis, so lots of kids are being sent down the wrong path.

I feel that our school psychologists are quite qualified to use the tests that determine eligibility criteria. A team, including parents, determines what the eiligibility should be dependent upon test scores obtained in an evaluation. If parents, or any team member, are uncomfortable with the recommendation for services, the committee reviews the options and ultimately the parents make the decision.

I always recommend to parents that they should contact a parent advocate group. We welcome them to our IEP meetings and they truly help the process go smoothly for everyone. I'm sorry if you have had a bad experience, it should never be that way. My experience has been that our school system does not want to overqualify or call someone something they are not.

 

[DisneyfeverTN]

I don't know anyone who has autism. All I know is what I have seen on TV and read about. While I don't think vaccinations cause autism, I'm unsure if it might trigger something in some children. I do think environmental factors contribute to many cases where a child might have a genetic predisposition for autism.

I would like to say to all the parents dealing with an autistic child, Bless You!! I can't even imagine how stressful that is. I pray that one day they will find out why so many children develop autism and are able to find ways to treat or cure it.

 

[belle&beast]

I went back and read all the posts and for those of you who remarked about Asperger's and high functioning autism not being mentioned on Oprah, there was a documentary on MTV about 2 weeks ago. It is one of the True Life series and is called True Life: I Have Autism. They showed remarkable teens and young adults living with autism. I was intrigued because I work with younger kids and rarely see them able to talk about their feelings.

In reading all the posts, I hope I did not offend anyone, I jumped in before I had time to read everything. I am passionate about my work and I love working with children with autism and their parents. I wish all of you the best!