DSis just found out her 12yo has Aspergers

[minkydog]

And the doctor didn't tell her. He wrote the diagnosis as Depression, ADHD and Aspergers in a letter to the school and she intercepted it. DSis is devastated. DNeice had been diagnosed with a couple of anxiety disorders and ADHD prior to this. Now DSis and I have had some conversations in the past about autism-spectrum disorders because I have thought for many years that the neice has Aspergers. DNiece has almost no friends due to her weird behavior and lack of social skills; she really puts people off, but she is a my sisters special snowflake. DSis wouldn't hear any of it and refused to have her tested because "if they test for autism, that's what they'll find." She has a masters in education, BTW, so she is *not* uninformed.

Still, to find out through a letter. That's cold. I think I would have to give the psychiatrist a piece of my mind right before I fired him.

 

[Gabes_mommy]

And the doctor didn't tell her. He wrote the diagnosis as Depression, ADHD and Aspergers in a letter to the school and she intercepted it. DSis is devastated. DNeice had been diagnosed with a couple of anxiety disorders and ADHD prior to this. Now DSis and I have had some conversations in the past about autism-spectrum disorders because I have thought for many years that the neice has Aspergers. DNiece has almost no friends due to her weird behavior and lack of social skills; she really puts people off, but she is a my sisters special snowflake. DSis wouldn't hear any of it and refused to have her tested because "if they test for autism, that's what they'll find." She has a masters in education, BTW, so she is *not* uninformed.

Still, to find out through a letter. That's cold. I think I would have to give the psychiatrist a piece of my mind right before I fired him.

I have my master's in educational psychology and I actually agree that this statement is often true.

I'm not saying your niece doesn't have Asperger's. I've just seen autism be way over-diagnosed. It's all about programs receiving "funding".

 

[Ember]

As a teacher in a similar situation (mum has refused for years to test one of my students who I'm nearly positive in on the spectrum), perhaps there was no choice.

My student needs help. He needs a full time aid and to have the funding to pay for one he needs a diagnosis. Right now, we're taking money away from other students who have qualified to pay for his aid. That isn't right, but there is literally no choice. It was that or he doesn't attend school, but rather sits in the office all day.

We only now getting into testing for him. After over two and a half years of having him in the system and teachers pushing for it from the beginning. Mum has asked for copies of everything, but we're avoiding her. Again, it's not right. But she has stonewalled us at each and every turn. It was only the threat of putting her son in the behavior room that got her moving at all. We aren't giving her anything until it's too late to stop things from getting where they need to be.

If and when there is a diagnosis, I can see a similar situation happening. Where mum only finds out about after everything is done and can't be undone. I agree that this is harsh, but I can also see a situation where the other people involved felt there was no other option.

 

[LuvOrlando]

The Dr and the school need to act in the child's best interests and if the parents appear to be a problem they will go around them. This isn't about your Dsis, its about her child, and if she will not accept reality then maybe there needs to be an intervention of some kind. I am sure your sister is not the first parent who refuses to accept they have a child with a disability. Denial is fine as long as it doesn't get in the way of the child's care. BTW, a Psychiatrist is pretty high on the food chain so I'd bet his/her opinion is more valid than say someone with a MSW or a regular teacher.

I think your sister needs support with accepting this reality more than anything else. Good luck to you and your family

 

[Pigeon]

That seems highly unethical to me. It's not the doctor's job to do an end run around the child's parents. It might have been difficult to pass this information on to your sister, but that's life.

That said, I hope your sister can get this child the services she needs ASAP. It's unfortunate that she waited this long.

I have a nephew (now an adult) with this condition. My sister also didn't want to hear that he had special needs, and he didn't start getting therapy until he was in his late teens, which was not to his benefit at all.

 

[DisneyBamaFan]

This is a pretty maddening scenario. On the one hand, we would like to know that parents, teachers and doctors all have the children's best interests at heart. On the other hand, that is simply not always true. Given that, I think that the parents should make all decisions of this nature for their children. I also think that the information that the doctor shared could put him in violation of HIPAA laws...

 

[freckles and boo]

You can spend time and energy being outraged for the mother who was in denial or you help her find some direction and strategies so that her daughter has the best chance of a good future. I have a kid with autism and ADHD. Ignoring it doesn't make it go away.

 

[cheermom1]

It is sad...I will share my story...my ds 15 has been diagnosed with ADHD. I don't think he is I think he is Aspergers so does the school. He has social behaviors and other things that make us think this.. he also is a very calm child..but the best part is that now that I know I can handle him and so can the school but docs refuse to change his diagnosed

however now that we (school and I) have been treating it as Aspergers he as excelled in school with no meds!! it can be done, he is now getting friends and is thinking about a votech!! He was so depressed before with the ADHD meds and thought he didn't matter and he was detective, it was so sad..this is one example of what a miss diagnosis can do..

My point is that it doesn't matter what end it is on either docs or the parents or the school they are every where. sad part is the kids are the ones caught in the middle and in my case is not getting the meds (but at this point he is doing very well without them)...But that is b/c SOMEONE weather it be the parent or the school or a doc is looking out for him and helping him...

I hope what I said made sense???

I have not persued getting him diagnosed with anything else b/c he really is doing very well in school and socially that I think it could be a set back if I did, the school agrees..

 

[KirstenB]

You can spend time and energy being outraged for the mother who was in denial or you help her find some direction and strategies so that her daughter has the best chance of a good future. I have a kid with autism and ADHD. Ignoring it doesn't make it go away.

This. Every second counts, and a lot of valuable time has been wasted. It's not like you get a do-over. Don't get me wrong. When dd was dx'd with autism at 22 mths old, we were beyond devastated. You can be devastated, and still fight like heck to get your child what he/she needs. Your sister needs to move past this, or at least push it aside for now, and figure out how best to help her child.

 

[minkydog]

The Dr and the school need to act in the child's best interests and if the parents appear to be a problem they will go around them. This isn't about your Dsis, its about her child, and if she will not accept reality then maybe there needs to be an intervention of some kind. I am sure your sister is not the first parent who refuses to accept they have a child with a disability. Denial is fine as long as it doesn't get in the way of the child's care. BTW, a Psychiatrist is pretty high on the food chain so I'd bet his/her opinion is more valid than say someone with a MSW or a regular teacher.

I think your sister needs support with accepting this reality more than anything else. Good luck to you and your family

I agree. Dsis is a very pushy force to be reckoned with personality. She basically intimidated other people to get her way. I think that's why the school hasn't been able to get anywhere with her. Just recently the psychiatrist told her that her daughter is spoiled. I agree. DNiece runs the household and does what she pleases, which does not endear her to other people. I understand that kids with disabilities are different--I have two. But kids with disabilities, even autism, can be taught good manners and respect.

That seems highly unethical to me. It's not the doctor's job to do an end run around the child's parents. It might have been difficult to pass this information on to your sister, but that's life.

That said, I hope your sister can get this child the services she needs ASAP. It's unfortunate that she waited this long.

I have a nephew (now an adult) with this condition. My sister also didn't want to hear that he had special needs, and he didn't start getting therapy until he was in his late teens, which was not to his benefit at all.

This is what bothers me. If only this girl could have gotten the RIGHT kind of treatment at an earlier age. How different things might have been. It's not like she just started having these behaviors. She has always been odd and different. Dsis just hasn't wanted to entertain that her special snowflake could have a disability.

You can spend time and energy being outraged for the mother who was in denial or you help her find some direction and strategies so that her daughter has the best chance of a good future. I have a kid with autism and ADHD. Ignoring it doesn't make it go away.

That's what I have told her. Having a child who has significant mental retardation myself, I am very familiar with the process. I have warned her that it will get worse before it gets better. The way they have to describe your child, showing them at their worst, is the only way to get the services they need. You love them so much it's almost unbearable to see it on paper.

We have several familiy members with developmental or mental health disabilities.

**DS14--severely/profoundly developmentally delayed
**DNephew8--also autistic(thankfully diagnosed at age 4)
**Dniece24--schizoaffective disorder
**DS23--bipolar and severe learning disabilities
**Dnephew20--depression
**DBro46--alcoholic
**Dmom--depression
**Dsis52--depression
**Dsis45--bipolar, anxiety
**DGrandF--bipolar
**myself--bipolar, anxiety

And that doesn't even include the several cousins and aunts who also suffer with dev. delays or mental illness. There HAS to be a genetic component.

I certainly plan to help my sister in any way I can. I would never dream of saying "I told you so." She is hurting so badly. I did send her a pair of beautiful heart-shaped garnet earrings(her birthstone) to give her a lift and let her know she can do this. We live about 300 miles apart so there is little I can do to help but I can be sounding board for her frustration and anger.

 

[Motherofboys]

Just and FYI for those who deal with these issues and follow the latest research and news, Asperger's is not going to be included as it's own diagnosis in the new DSM.

It will be part of the autism spectrum, not a separate disorder.

They are also removing the diagnosis of bi-polar disorder in children and going to something that is more like conduct disorder.

 

[eliza61]

You can spend time and energy being outraged for the mother who was in denial or you help her find some direction and strategies so that her daughter has the best chance of a good future. I have a kid with autism and ADHD. Ignoring it doesn't make it go away.

It's very hard for some parents. Every thing in our society screams being different is "bad" especially for children. What parent doesn't dream that their kid is going to be "brain surgeon, madame Currie, President and Dan Marino all rolled up into one.
A parent has got to accept their child before any type of help can be given.

 

[Tuffcookie]

Youngest DS was in middle school before his AS got diagnosed. I had never heard of it before but, coincidently, I had a friend who adopted a young son, with Asperger's. The more I read about it, the more I realized this is what youngest DS had. When DS went to middle school his grades took a nose-dive and he could not keep organized. The changing classrooms every period was just awful! One of his teachers thought he might be depressed. So, going into the Dr's office, I had my suspicions that it might be AS, but I kept them to myself. I wanted to hear what the Dr. would say.

It didn't take long of talking with and observing my DS that the psychiatrist came up with Asperger's.

It was discussed openly in front of my DS and myself. I did not find out later in a letter to the school!

Minkydog, I can't tell you how much knowing that has helped me in helping DS! He started band in 5th grade and every year wanted to drop out. I managed to convince him to stay in every year. It was so good in helping him develop social skills and learning to be a team player!

At first DS was kept in the same classroom all day, only being mainstreamed for phys ed and band. Now he is in high school and a senior and he has been mainstreamed in all of his classes for the last 3 years! He is making A's & B's! He is driving and holding a job. We are planning for college now and his future is looking bright.

He still has a degree of immaturity about him, which to be honest, I sometimes can't tell if it's an AS thing or basic male immaturity!

TC

 

[freckles and boo]

But kids with disabilities, even autism, can be taught good manners and respect.

Absolutely! My little girl is very polite. She is impulsive and sometimes asks inappropriate questions ("Excuse me. Do you have a baby in your belly?" ) but she is never mean-spirited or cruel. There are times when you have to try discern what is personality vs. development vs. what is coming to the surface because of the disability. Most verbal children with high-functioning autism or Asperger's should be able to use "please" and "thank you" and "you are welcome".

 

[minkydog]

Minkydog, I can't tell you how much knowing that has helped me in helping DS! He started band in 5th grade and every year wanted to drop out. I managed to convince him to stay in every year. It was so good in helping him develop social skills and learning to be a team player!

At first DS was kept in the same classroom all day, only being mainstreamed for phys ed and band. Now he is in high school and a senior and he has been mainstreamed in all of his classes for the last 3 years! He is making A's & B's! He is driving and holding a job. We are planning for college now and his future is looking bright.

He still has a degree of immaturity about him, which to be honest, I sometimes can't tell if it's an AS thing or basic male immaturity!

TC

This pretty much describes DNiece. The school put her in a class for Emotionally Disturbed kids this year to give her more structure and my sister fought it tooth and nail. But it's really what DNiece needs. I won't say she has thrived but she is getting more help than before. Her grades are still tanking and she hates school. And she is extremely immature. She's in the band and like your son, she wants to quit every year despite the fact that once she's in there she loves it. She is terrible at group activities because she simply can't behave like the other kids. However, DNiece has discovered solitary sports. She is fantastic at golf and bowling! In fact, she is so good at golf that we're all thinking she might get a college scholarship if she sticks with it. The funny thing is, NOBODY in my entire family plays golf

 

[angwill]

As a teacher in a similar situation (mum has refused for years to test one of my students who I'm nearly positive in on the spectrum), perhaps there was no choice.

My student needs help. He needs a full time aid and to have the funding to pay for one he needs a diagnosis. Right now, we're taking money away from other students who have qualified to pay for his aid. That isn't right, but there is literally no choice. It was that or he doesn't attend school, but rather sits in the office all day.

We only now getting into testing for him. After over two and a half years of having him in the system and teachers pushing for it from the beginning. Mum has asked for copies of everything, but we're avoiding her. Again, it's not right. But she has stonewalled us at each and every turn. It was only the threat of putting her son in the behavior room that got her moving at all. We aren't giving her anything until it's too late to stop things from getting where they need to be.

If and when there is a diagnosis, I can see a similar situation happening. Where mum only finds out about after everything is done and can't be undone. I agree that this is harsh, but I can also see a situation where the other people involved felt there was no other option.

Dang, where I live a school can not legally diagnose a child with anything since teachers, administrators etc are not doctors and even the school psychologist can not give a diagnosis. They can test and suggest taking the child to a child psychologist but that is all. Doing things behind a parents back sounds like a lawsuit waiting to happen.

That said I can understand the frustration and maybe the behavior class is what will help the child be in the correct environment to learn more from someone who has knowledge of how to teach children with these issues.

 

[BernardandMissBianca]

We only now getting into testing for him. After over two and a half years of having him in the system and teachers pushing for it from the beginning. Mum has asked for copies of everything, but we're avoiding her. Again, it's not right. But she has stonewalled us at each and every turn. It was only the threat of putting her son in the behavior room that got her moving at all. We aren't giving her anything until it's too late to stop things from getting where they need to be.

Is that even legal? Here you can not suggest anything without parental consent. And I believe you can not with hold info from the parents.
And yes she can stop things from progressing, she can pull her kid out of school. I know, I've done it.

Dang, where I live a school can not legally diagnose a child with anything since teachers, administrators etc are not doctors and even the school psychologist can not give a diagnosis. They can test and suggest taking the child to a child psychologist but that is all. Doing things behind a parents back sounds like a lawsuit waiting to happen.

Yep! We removed our oldest from school in the 3rd grade because the teacher decided to diagnose him with ADHD. Apparently she was an "expert" because she's been a teacher for 30 years. We went round and round with the Board of Ed over her. We finally got it all straightened out and got him out of her and her sister's grasp, he is now excelling as a student.
Of course now we are dealing with her with DS8 and it's been quite a challenge. To the point that we again pulled him out and we're sending him to another school for the rest of the year and next year (sister is the 4th grade teacher)

 

[DeluxePrincess]

I know when I taught, parental permission was needed for everything. There was no way of "going around parents". They were either onboard or not. I can't imagine that diagnosing w/o parental permission is legal anywhere. I also find it hard to believe that a doctor would send a diagnosis off to school w/o discussing the results with a parent first. As a parent, I certainly wouldn't let that slide.

 

[cheermom1]

Is that even legal? Here you can not suggest anything without parental consent. And I believe you can not with hold info from the parents.
And yes she can stop things from progressing, she can pull her kid out of school. I know, I've done it.



Yep! We removed our oldest from school in the 3rd grade because the teacher decided to diagnose him with ADHD. Apparently she was an "expert" because she's been a teacher for 30 years. We went round and round with the Board of Ed over her. We finally got it all straightened out and got him out of her and her sister's grasp, he is now excelling as a student.
Of course now we are dealing with her with DS8 and it's been quite a challenge. To the point that we again pulled him out and we're sending him to another school for the rest of the year and next year (sister is the 4th grade teacher)

Sounds like neither needs to be teachers..and that some teachers just want the kids to sit like zombies ...

 

[freckles and boo]

Sounds like neither needs to be teachers..and that some teachers just want the kids to sit like zombies ...

And some parents have their heads planted deeply up their behinds. I know several who would rather have their children floundering than have them "labeled". Since we only have one side of this story I am willing to give the teachers the benefit of the doubt. Fortunately most parents know their kids need help and most teachers understand that they cannot stray into medical territory even when experience tells them something is very wrong.