When new members ask about diagnosis

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Rocket123
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26 Aug 2014, 10:06 pm

This discussion is quite interesting. These days, it?s so difficult to raise a child, let alone one diagnosed with ASD.

With respect to raising children, from my perspective, the most important thing is to set these children up for success as adults (for both ASD and neurotypical children). Unless you intend to have these children on disability as adults, it?s best to integrate them into society as quickly as possible. Unquestionably, I would have preferred to be left in my own little world as a child. But, then, where would I be as an adult.

I think Temple Grandin does an exceptional job describing what parents need to do to be successful raising kids with ASD. I was fortunate, as my parents operated from a similar play book.

Certainly, it takes more work and sacrifice (for the parents). But that?s part of the agreement. After all, the child wasn?t asked to be brought into the world.



cyberdad
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27 Aug 2014, 2:17 am

YippySkippy wrote:
One word in caps is the equivalent of bolding or using italics. It is for emphasis.
It is not shouting.

Oh ok, sorry about that...
YippySkippy wrote:
If you're fine with your child being denied resources, that's your business. I'm not fine with it for my child.

Well that's plain silly, we each advocate whats in the best interests for our own children. I'm probably no different to you. However I am being realistic that governments are unlikely to spend money on disability child support unless the child has a functional deficit/s that prohibits them from independent living.



WelcomeToHolland
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30 Aug 2014, 4:30 pm

My experience has been that people would rather give more resources to the ones who have a chance of "going somewhere" than the ones who don't. People in general tend to view giving resources to severely disabled people (of any sort) as a necessary waste of resources (necessary if we don't believe in human euthanasia which most people wouldn't admit to believing in even if they do). In some ways, maybe that's right. I guess it just depends on what the point of life is, really. As a parent of kids who most likely aren't going anywhere, I'd like to think their presence on earth benefits people (I have to think that for my own sanity- I think they benefit my life at the very least). Bit are they going to pay taxes? No. Are they going to have an amazing scientific discovery? No. Are they going to do anything tangible that benefits society? Honestly- probably not. Maybe a kid with HFA with the right support will. Yet my kids probably do eat up resources for those possibly successful kids. I understand that. I can see the frustration of parents of HF or even not autistic but just GIFTED kids who are in stuck bored out of their minds so that my kid can have a special class in which to drool. That makes me sad but that's because it's my kids! I love my kids so I have to advocate for them, regardless of how that may take away from other people's resources. I can't see an easy fix to ensure exceptional kids get appropriate special attention.


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ASDMommyASDKid
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30 Aug 2014, 7:20 pm

I don't think it is popular to give resources to anyone who is outside of the mainstream. If you can sit in a class and behave, it is the most important thing. Even if you are not paying attention. If you can sit for the standardized tests (in my country) and pass, so the school doesn't get penalized, even better. If your kid can't do that with very minimal services like speech and maybe an inclusion aide for the whole class... they are not interested.

I think the fact that we are even talking about it in the context of parents of HFA kids fighting it out for resources with parents of LFA kids, is, I am certain, the wrong way to look at it. As far as I know, there is not a set fund for ASD we are all fighting over.

The schools are trying to take as much of that money they get for special ed and shove it into the general expenses. (At least in the U.S) They try to make you feel like you are begging for charity when you ask for what your child is entitled to, but they are getting money, though, probably, I acknowledge, not enough for all of what the schools need to do.

Any of the times I was chastised for asking for too much, I wonder what would have happened if I had asked for an accounting of however much extra money they were getting for my son. If I asked them how that money was being spent, what would the answer have been? I bet a good portion was for collective resources used for all the kids, like smart boards and the like.

Regardless, there is nothing gained by us turning on each other and fighting with each other over resources. If the schools need more resources to serve all the kids' needs, maybe that is where that takes us.

Edited for syntax



Last edited by ASDMommyASDKid on 31 Aug 2014, 6:49 am, edited 1 time in total.

YippySkippy
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30 Aug 2014, 8:25 pm

It seems like there are a number of strange ideas being put forward this thread.
Including:
1. Doctors diagnose NT children with autism.
2. Parents of NT children doctor-shop to get these false diagnoses.
3. Schools and/or governments offer resources to people who don't need them.
4. There is a big pile of money, but not enough to go around, and the parents of HF and LF childen must duke it out.

In the words of a certain insurance commercial, "That's not how this works. That's not how any of this works!"

:D



momsparky
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30 Aug 2014, 10:44 pm

I'd add,

5. HFA kids and low-functioning kids are given the same kinds of resources delivered the same way.

I definitely want "low-functioning" kids to get resources: parents should not have to be lifetime caregivers without any respite or support for any child. It makes me crazy that in our state, people who are housebound due to physical disability sometimes can't leave their bedrooms for lack of an aide. THAT is where I feel good about tax dollars going. Maintaining the quality of life for all disabled people should be a core value of any government.

That maintenance is going to look different depending on the different needs of the individuals who use it.



cyberdad
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31 Aug 2014, 3:49 am

A reality check on your points

YippySkippy wrote:
It seems like there are a number of strange ideas being put forward this thread.
Including:
YippySkippy wrote:
1. Doctors diagnose NT children with autism.

Parents and doctors come to an arrangement to assess their high functioning child when they display worst symptoms possible in order to fit an autism diagnosis so parents can claim services...

YippySkippy wrote:
2. Parents of NT children doctor-shop to get these false diagnoses.

See above

YippySkippy wrote:
3. Schools and/or governments offer resources to people who don't need them.

Schools provide aides to for children who probably don't need them. For instance my daughter's aide is now split 50% of her time with a child who is quite clearly functioning NT but has learning difficulties

YippySkippy wrote:
4. There is a big pile of money, but not enough to go around, and the parents of HF and LF childen must duke it out.

The decision to fund is left to education department psychologists/secialists who are not swayed by lobbying by parents.



ASDMommyASDKid
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31 Aug 2014, 7:09 am

cyberdad wrote:
A reality check on your points

YippySkippy wrote:
It seems like there are a number of strange ideas being put forward this thread.
Including:

YippySkippy wrote:
1. Doctors diagnose NT children with autism.

Parents and doctors come to an arrangement to assess their high functioning child when they display worst symptoms possible in order to fit an autism diagnosis so parents can claim services...

YippySkippy wrote:
2. Parents of NT children doctor-shop to get these false diagnoses.

See above

YippySkippy wrote:
3. Schools and/or governments offer resources to people who don't need them.

Schools provide aides to for children who probably don't need them. For instance my daughter's aide is now split 50% of her time with a child who is quite clearly functioning NT but has learning difficulties

YippySkippy wrote:
4. There is a big pile of money, but not enough to go around, and the parents of HF and LF childen must duke it out.

The decision to fund is left to education department psychologists/secialists who are not swayed by lobbying by parents.


1) I know anecdotes don't equal data but I have never seen that to be the case. A lot of us try to underplay it, especially during the denial stage, for those of us who went through that.

2) I have never seen that either. Most people actively try to avoid the stigma, especially when they see what little "help" is available. In addition, this help won't be much help to an NT. It is like intentionally giving antibiotics to some one who does not have a bacterial infection. Why?

3)True and not true --- If you do not advocate for your child you will likely get little to nothing unless the teacher insists on it to make her life easier. That said, even if you advocate there are policies in place that prevent you from getting what they consider too much.

As far as your aide goes, I have read many stories that are similar. It is because they do not like to spend money to give an aide to one child, and so even when they do, they make the aide do other things to help the teacher out. On the flip side, they will take a child who needs an aide, put him in an inclusion class, complain that the aide spends too much time with that child, and still insist that child does not need a one-to-one aide.

4) Money in the U.S gets allocated to the district for special needs, and they are supposed to spend a certain amount of it on that at a minimum. They finagle the numbers often so that more can be used for general services, when they can, and try to keep from spending it on special needs kids. (That is my experience, at any rate)

Edited b/c I forgot point 4.



YippySkippy
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31 Aug 2014, 9:09 am

Quote:
A reality check on your points


My experiences and views are just as real and valid as yours.

Quote:
Parents and doctors come to an arrangement to assess their high functioning child when they display worst symptoms possible in order to fit an autism diagnosis so parents can claim services...


What is your evidence of this? I am the parent of a high-functioning child and I didn't do that, so does my anecdote make it untrue? I didn't "doctor shop" either. I'm not that wealthy.

Quote:
Schools provide aides to for children who probably don't need them. For instance my daughter's aide is now split 50% of her time with a child who is quite clearly functioning NT but has learning difficulties


You performed an assessment on that child?

Quote:
The decision to fund is left to education department psychologists/secialists who are not swayed by lobbying by parents.


Agreed. Children who have aides or other services have them because they need them.



zette
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31 Aug 2014, 10:16 am

Quote:
1. Doctors diagnose NT children with autism.

I doubt many truly NT kids are getting a dx of autism. The kids are presenting with a significant impairment of some kind and clearly need help. I'd say doctors are more likely to hand out an ADHD or ODD dx in cases where it's unclear.

Quote:
2. Parents of NT children doctor-shop to get these false diagnoses.

Parents doctor shop when the answers they are given don't solve the problems that led them to seek help in the first place.

Quote:
3. Schools and/or governments offer resources to people who don't need them.

No, it's more of a case of, "we let everyone else fall through the cracks, why shouldn't you?"

Quote:
4. There is a big pile of money, but not enough to go around, and the parents of HF and LF childen must duke it out.

I've never been able to get a clear picture of where the money for special ed flows from and where it goes to. I suspect the bureaucracy is taking a disproportionate share. Parents should work to get IDEA fully funded for ALL levels of disability instead of fighting over how to divide the pie.



ASDMommyASDKid
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31 Aug 2014, 5:21 pm

zette wrote:
Quote:
1. Doctors diagnose NT children with autism.

I doubt many truly NT kids are getting a dx of autism. The kids are presenting with a significant impairment of some kind and clearly need help. I'd say doctors are more likely to hand out an ADHD or ODD dx in cases where it's unclear.

Quote:
2. Parents of NT children doctor-shop to get these false diagnoses.

Parents doctor shop when the answers they are given don't solve the problems that led them to seek help in the first place.

Quote:
3. Schools and/or governments offer resources to people who don't need them.

No, it's more of a case of, "we let everyone else fall through the cracks, why shouldn't you?"

Quote:
4. There is a big pile of money, but not enough to go around, and the parents of HF and LF childen must duke it out.

I've never been able to get a clear picture of where the money for special ed flows from and where it goes to. I suspect the bureaucracy is taking a disproportionate share. Parents should work to get IDEA fully funded for ALL levels of disability instead of fighting over how to divide the pie.


^^^All of this^^^



cyberdad
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01 Sep 2014, 3:14 am

zette wrote:
I've never been able to get a clear picture of where the money for special ed flows from and where it goes to. I suspect the bureaucracy is taking a disproportionate share.

Partly bureaucracy but many millions go into research. It's really hard to confirm the cost/benefit of every dollar spent on autism research and whether the money is better spent on early intervention services such as speech therapy?

I've just been made redundant from a university project in the health sector where the chief researchers have overall spent a hundred thousand dollars of taxpayers money on consultation trips and international conferences in the south pacific, Bali, tropical Queensland, Italy and the south of France Given there are thousands of people waiting for cancer treatment I find this use of health money highly unethical.

zette wrote:
Parents should work to get IDEA fully funded for ALL levels of disability instead of fighting over how to divide the pie.

True, hopefully the Australian national disability insurance scheme will cover everybody here who needs funding to support their kids. The problem is the roll out will only start in 2018.



btbnnyr
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01 Sep 2014, 1:21 pm

cyberdad wrote:
YippySkippy wrote:
Quote:
This is true, but BTNNR and I are speaking about carving out limited resources for the "neediest" applicants...


Which ones are the neediest? The group that includes YOUR child, I'm guessing.


Actually my child is borderline LFA/HFA (high on IQ but low on social skills) so no...if you read BTNNR's post she referred to people classified on the lower end of the spectrum who need the most financial support. BTW there is no need to "SHOUT"...


I was probably in similar subgroup as your daughter when I was a child, the combination of high intelligence and really low social/communication skills, and I can say that I am glad that I didn't have one-on-one aide, since I wouldn't have learned as many skills during my K-12 years to prepare me for being an adult, in some areas earlier than neurotypical peers.

More help is not always good, if it prevents the child from learning and doing things that they can learn and do with some pushing and guidance initially. I am glad that my parents pushed me to learn and do things out of my comfort zone frequently. They also didn't worry about things going smoothly for me on a daily basis, and they didn't care much about meltdowns either. I think it is good to have plenty of meltdowns as a child to get things out of the system, and possibly only by having plenty of meltdowns as a child did I learn not to have meltdowns as an adult. I have seen this with LFA children too, just let them have frequent smaller meltdowns, then whatever caused the meltdown becomes accepted, since it was not the thing that was the problem, but the process of change that was the problem, but that stress was released by the meltdown.

I think that pursuit of more and more intensive services is not good for many HFA children, and this is a point that many parents can't accept, that more is negative. I don't think of services in the school system as LFA vs. HFA, but what is best for different subgroups of children in the long term, and I question that more is positive for HFA children, particularly those with higher IQ or milder autism.


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cyberdad
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02 Sep 2014, 2:26 am

btbnnyr wrote:
More help is not always good, if it prevents the child from learning and doing things that they can learn and do with some pushing and guidance initially. I am glad that my parents pushed me to learn and do things out of my comfort zone frequently. They also didn't worry about things going smoothly for me on a daily basis, and they didn't care much about meltdowns either. I think it is good to have plenty of meltdowns as a child to get things out of the system, and possibly only by having plenty of meltdowns as a child did I learn not to have meltdowns as an adult. I have seen this with LFA children too, just let them have frequent smaller meltdowns, then whatever caused the meltdown becomes accepted, since it was not the thing that was the problem, but the process of change that was the problem, but that stress was released by the meltdown..


I understand what you are saying and probably your case illustrates the problems with our labels HF Vs LF. My daughter has attention issues and the aide is really there to just keep an eye on her so she doesn't do something silly like get up and leave the classroom or get fixated with something else. There's also the ever present risk of noise causing her to have a meltdown (she is learning to cope better with this).

The reason they have now split the aide's time with another child is my daughter is choosing to be more independent now. She takes pride in doing things herself without anyone else's help. I guess you are right, we need to look to the future when she can dictate her own movements without an aide. But that's going to take a while.



btbnnyr
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02 Sep 2014, 3:31 pm

As part of my education plan, I was allowed to leave the classroom and go to the library when I wanted, since I was doing self-study and not following along with the class.

Another thing that always disturbed me about the full-time aide setup for both HFA and LFA children is how can the autistic child stand to be around someone so much throughout the day? There seems to be much more social interaction than an average autsitic child can handle, and it seems highly overloading, hooomans even more so than noise and light. It seems like their cognitive functions might be negatively affected by not just the classroom environment, but also the close encounters aides or teachers. I know that my functioning drops when I am around people, and I am much smarter alone.


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03 Sep 2014, 2:45 am

btbnnyr wrote:
Another thing that always disturbed me about the full-time aide setup for both HFA and LFA children is how can the autistic child stand to be around someone so much throughout the day? There seems to be much more social interaction than an average autsitic child can handle, and it seems highly overloading, hooomans even more so than noise and light. It seems like their cognitive functions might be negatively affected by not just the classroom environment, but also the close encounters aides or teachers. I know that my functioning drops when I am around people, and I am much smarter alone.


I guess I need to factor that in. At the moment my daughter loves her aides (she has a rotation of 4 different aides at different times). Having said that she is moving into a frame of mind where she prefers to do things on her own.