"My Son Has the Kind of Autism No One Talks About"

Page 8 of 8 [ 126 posts ]  Go to page Previous  1 ... 4, 5, 6, 7, 8

League_Girl
Veteran
Veteran

User avatar

Joined: 4 Feb 2010
Gender: Female
Posts: 27,317
Location: Pacific Northwest

02 Oct 2015, 1:03 am

ASDMommyASDKid wrote:
btbnnyr wrote:
False diagnosis is not confined to higher-functioning kids, most cases I have heard about are parents of lower-functioning kids who have another disability like blindness or ID getting diagnosed also with autism with the cooperation of the doctor (there is no need to fake anything during assessment if the doctor cooperates to give you the diagnosis you want) specifically to get services that have designated to autistic kids in their geographic area.


Why? Would the child not get help for the blindness where you are?

A baby I know had speech issues relating to hearing issues with constant ear infections during speech development ages. He got speech services having to do with his speech delay.


Do you know how he turned out? Did it affect his learning style or social skills and did he stop talking completely when he was a baby when he was deaf?


_________________
Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.

Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.


ASDMommyASDKid
Veteran
Veteran

User avatar

Joined: 27 Oct 2011
Gender: Female
Posts: 3,666

02 Oct 2015, 10:20 am

It did affect his speech development. He is developing speech but it is delayed. He wasn't very social before the ear infections, so I don't think it was caused by his speech issues. I was thinking it is actually harder to get an autism diagnosis if you have had hearing issues because a lot of the diagnostic procedure for autism is designed to rule out anything else. If you have something else, they are less likely to attribute issues to autism if they can attribute it to something else.

Anyway, he is 6 or so and he has gotten to the point where his parents can understand what he is trying to say, but no one else can. The last time I saw him, I think I picked out one word he was saying, in an hour of seeing him. His speech is developing, but not on the usual schedule.



League_Girl
Veteran
Veteran

User avatar

Joined: 4 Feb 2010
Gender: Female
Posts: 27,317
Location: Pacific Northwest

02 Oct 2015, 12:55 pm

ASDMommyASDKid wrote:
It did affect his speech development. He is developing speech but it is delayed. He wasn't very social before the ear infections, so I don't think it was caused by his speech issues. I was thinking it is actually harder to get an autism diagnosis if you have had hearing issues because a lot of the diagnostic procedure for autism is designed to rule out anything else. If you have something else, they are less likely to attribute issues to autism if they can attribute it to something else.

Anyway, he is 6 or so and he has gotten to the point where his parents can understand what he is trying to say, but no one else can. The last time I saw him, I think I picked out one word he was saying, in an hour of seeing him. His speech is developing, but not on the usual schedule.



I do think autism can be hard to diagnose if the kid has other issues like hearing loss or if they were abused or neglected or have other co morbids where symptoms overlap. I was very difficult to diagnose due to my medical history and I have wondered over the years if I would still be the same way if I didn't have hearing loss or was it a coincidence. My mom doesn't know either and says that is a good question. I am still curious about NT babies having hearing loss and then seeing how they turn out like do they stop talking and making sounds completely, does it affect their social skills in the future and their learning, does it give them sensory issues or disliking change or people touching their things or they get very upset? I have also wondered if my brain is just all messed up because of my medical history.


_________________
Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.

Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.


DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,689
Location: Northern California

02 Oct 2015, 1:39 pm

What we were told is that some parents seeking a possibly inappropriate label are just looking for the extra time and separate room on the SAT and AP tests, both of which can help boost scores. I haven't identified any such families personally, but I do know the accommodations rooms for these tests are always full. To get the accommodations code from the college board you need to have a history with the diagnosis and, thus, parents who want to play this angle will start out in elementary school.

It is parents in places like NYC that can be overly "dog eat dog," willing to do absolutely anything to get their kids ahead. And their kids grow up believing that it is OK to play every potential advantage, lie or not. We have some in our county, although I choose a school district in which it is less prevalent.

A good IEP team in a school will see and sort out those people. A poor one may be too exhausted to care. Perfect systems are impossible to find in real life, although I very much appreciated all the people who worked with us. We worked with caring, intelligent people of integrity all the way through, with rotting apples rare. And they gave me positive feedback, as well, since I always did my best to understand their side. We were extremely lucky.

I don't think the answer is to play dirty just because other people are. We need more people to grow up feeling they can be valued and effective as caring people of integrity, so that things improve over time instead of degenerating.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


Fitzi
Veteran
Veteran

User avatar

Joined: 5 Jul 2013
Gender: Female
Posts: 545

02 Oct 2015, 2:35 pm

DW_a_mom wrote:

It is parents in places like NYC that can be overly "dog eat dog," willing to do absolutely anything to get their kids ahead. And their kids grow up believing that it is OK to play every potential advantage, lie or not. We have some in our county, although I choose a school district in which it is less prevalent.


I replied to your previous "dog eat dog" description of parents in NYC earlier in the thread. I am from NYC, have lived in various parts of the city and have a large extended family scattered throughout the city and have, myself, not seen or heard anything that supports this assessment of NYC parents. Actually, many parents here see an ADHD or ASD diagnosis as a stigma here and, even if their kid receives this diagnosis from a private assessment, hide it from the school. There are many services available here, but they are quite hard to get. A school will not give a kid any testing accommodations if there is no evidence that whatever issues whatever doctor claims the child has effects their academic performance. I know kids personally who have ASD who do not receive any services at all.

The way some very pushy/ ambitious parents here try to give their kids an advantage is more through lots of tutoring or test prep places. There are many expensive test prep places here in the city. I have met a couple of these types of parents, but most I know are not this type of parent. I'm sure these parents exist in all sorts of places.



momsparky
Veteran
Veteran

User avatar

Joined: 26 Jul 2010
Gender: Female
Posts: 3,772

02 Oct 2015, 2:57 pm

League_Girl wrote:
I do think autism can be hard to diagnose if the kid has other issues like hearing loss or if they were abused or neglected or have other co morbids where symptoms overlap. ... I am still curious about NT babies having hearing loss and then seeing how they turn out like do they stop talking and making sounds completely, does it affect their social skills in the future and their learning, does it give them sensory issues or disliking change or people touching their things or they get very upset? I have also wondered if my brain is just all messed up because of my medical history.


One of the things I noticed about autistic behavior in kids that are nonverbal (and even in highly verbal children sometimes) is that it is very, very similar to the childhood behaviors of Helen Keller. One of the reasons they screen for deafness so early is that it can, in fact, have a permanent negative impact on language development (Helen Keller lost her sight and hearing when she was a toddler, so she gained some language capacity at least conceptually before she lost her hearing and vision.)

Take a look at the similarities http://www.entnet.org/content/necessity ... on-hearing

In the end, it doesn't reallly matter as long as the services get you what you need, but you illustrate an important point: by requiring a specific label to get a specific service, you are not only ignoring co-morbids, but also not acknowledging that the same therapies and supports can help children with very different kinds of disability. I think that's what is happening in the cases listed above.



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,689
Location: Northern California

02 Oct 2015, 5:49 pm

Fitzi wrote:
DW_a_mom wrote:

It is parents in places like NYC that can be overly "dog eat dog," willing to do absolutely anything to get their kids ahead. And their kids grow up believing that it is OK to play every potential advantage, lie or not. We have some in our county, although I choose a school district in which it is less prevalent.


I replied to your previous "dog eat dog" description of parents in NYC earlier in the thread. I am from NYC, have lived in various parts of the city and have a large extended family scattered throughout the city and have, myself, not seen or heard anything that supports this assessment of NYC parents. Actually, many parents here see an ADHD or ASD diagnosis as a stigma here and, even if their kid receives this diagnosis from a private assessment, hide it from the school. There are many services available here, but they are quite hard to get. A school will not give a kid any testing accommodations if there is no evidence that whatever issues whatever doctor claims the child has effects their academic performance. I know kids personally who have ASD who do not receive any services at all.

The way some very pushy/ ambitious parents here try to give their kids an advantage is more through lots of tutoring or test prep places. There are many expensive test prep places here in the city. I have met a couple of these types of parents, but most I know are not this type of parent. I'm sure these parents exist in all sorts of places.


I think that once a parent starts flying the helicopter, you have no way to know where it will fly. In our county, I am hearing that there are families trying to take advantage of the extra time, but I will say again that I have not met any of them (or, at least, that I am aware of). I do not think these things are the norm, I am just admitting they seem to exist and MIGHT be at play for the OP.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


Fitzi
Veteran
Veteran

User avatar

Joined: 5 Jul 2013
Gender: Female
Posts: 545

02 Oct 2015, 7:32 pm

DW_a_mom wrote:
Fitzi wrote:
DW_a_mom wrote:

It is parents in places like NYC that can be overly "dog eat dog," willing to do absolutely anything to get their kids ahead. And their kids grow up believing that it is OK to play every potential advantage, lie or not. We have some in our county, although I choose a school district in which it is less prevalent.


I replied to your previous "dog eat dog" description of parents in NYC earlier in the thread. I am from NYC, have lived in various parts of the city and have a large extended family scattered throughout the city and have, myself, not seen or heard anything that supports this assessment of NYC parents. Actually, many parents here see an ADHD or ASD diagnosis as a stigma here and, even if their kid receives this diagnosis from a private assessment, hide it from the school. There are many services available here, but they are quite hard to get. A school will not give a kid any testing accommodations if there is no evidence that whatever issues whatever doctor claims the child has effects their academic performance. I know kids personally who have ASD who do not receive any services at all.

The way some very pushy/ ambitious parents here try to give their kids an advantage is more through lots of tutoring or test prep places. There are many expensive test prep places here in the city. I have met a couple of these types of parents, but most I know are not this type of parent. I'm sure these parents exist in all sorts of places.


I think that once a parent starts flying the helicopter, you have no way to know where it will fly. In our county, I am hearing that there are families trying to take advantage of the extra time, but I will say again that I have not met any of them (or, at least, that I am aware of). I do not think these things are the norm, I am just admitting they seem to exist and MIGHT be at play for the OP.


I hear what you're saying, but I disagree that it's a "thing" in NYC above other places.



ASDMommyASDKid
Veteran
Veteran

User avatar

Joined: 27 Oct 2011
Gender: Female
Posts: 3,666

03 Oct 2015, 2:52 am

Fitzi wrote:
DW_a_mom wrote:
Fitzi wrote:
DW_a_mom wrote:

It is parents in places like NYC that can be overly "dog eat dog," willing to do absolutely anything to get their kids ahead. And their kids grow up believing that it is OK to play every potential advantage, lie or not. We have some in our county, although I choose a school district in which it is less prevalent.


I replied to your previous "dog eat dog" description of parents in NYC earlier in the thread. I am from NYC, have lived in various parts of the city and have a large extended family scattered throughout the city and have, myself, not seen or heard anything that supports this assessment of NYC parents. Actually, many parents here see an ADHD or ASD diagnosis as a stigma here and, even if their kid receives this diagnosis from a private assessment, hide it from the school. There are many services available here, but they are quite hard to get. A school will not give a kid any testing accommodations if there is no evidence that whatever issues whatever doctor claims the child has effects their academic performance. I know kids personally who have ASD who do not receive any services at all.

The way some very pushy/ ambitious parents here try to give their kids an advantage is more through lots of tutoring or test prep places. There are many expensive test prep places here in the city. I have met a couple of these types of parents, but most I know are not this type of parent. I'm sure these parents exist in all sorts of places.


I think that once a parent starts flying the helicopter, you have no way to know where it will fly. In our county, I am hearing that there are families trying to take advantage of the extra time, but I will say again that I have not met any of them (or, at least, that I am aware of). I do not think these things are the norm, I am just admitting they seem to exist and MIGHT be at play for the OP.


I hear what you're saying, but I disagree that it's a "thing" in NYC above other places.



I agree with this, also. It is like when they talk about parents going crazy trying to put their kids in the best feeder Pre-Ks ---the amount of articles on this probably outnumbers the number of people doing it -- but yet people associate it as normal NYC behavior.

I think this issue of getting un-needed ASD services is even more blown out of proportion than that, even, and it is a disservice to say it exists in any significant quantities when it seems like people hear of most of these stories third hand.

It is like the "welfare queen" stories that go around that turn out to be totally fabricated or wildly exaggerated. It serves mainly to make people who look for needed services look bad.



Last edited by ASDMommyASDKid on 03 Oct 2015, 2:56 am, edited 1 time in total.

Fitzi
Veteran
Veteran

User avatar

Joined: 5 Jul 2013
Gender: Female
Posts: 545

03 Oct 2015, 10:19 am

ASDMommyASDKid wrote:
Fitzi wrote:

I hear what you're saying, but I disagree that it's a "thing" in NYC above other places.



I agree with this, also. It is like when they talk about parents going crazy trying to put their kids in the best feeder Pre-Ks ---the amount of articles on this probably outnumbers the number of people doing it -- but yet people associate it as normal NYC behavior.

I think this issue of getting un-needed ASD services is even more blown out of proportion than that, even, and it is a disservice to say it exists in any significant quantities when it seems like people hear of most of these stories third hand.

It is like the "welfare queen" stories that go around that turn out to be totally fabricated or wildly exaggerated. It serves mainly to make people who look for needed services look bad.


Yep. The media loves to fuel the New York City stereotypes!

One time, a parent posted on a popular Brooklyn parenting web community that she felt that ice cream vendors should not be allowed in NYC playgrounds because she felt it was unfair that she should have to say "no" over and over to her kid asking for ice cream when she didn't feel like buying it for her kid. It became a heated debate on the forum where most said: "Get over it, just deal with your kid's feelings" and some agreeing with her. It somehow ended up in the NY Times and even ended up in some international newspapers as a story about how ALL NYC parents are nuts, overly health conscious and feel so entitled to their own experience that they feel they should be able to control what types of vendors populate the public spaces.

These parents do exist, but NOT to the extent that they are reported to. And, as I said earlier, many of the "dog eat dog" (which also are not as prevalent as people say) types here are not even native New Yorkers but transplants who came to fulfill their big ambitions. But the media LOVES to support the rude, aggressive and entitled NY stereotype.



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,689
Location: Northern California

03 Oct 2015, 1:45 pm

Fitzi wrote:
DW_a_mom wrote:
Fitzi wrote:
DW_a_mom wrote:

It is parents in places like NYC that can be overly "dog eat dog," willing to do absolutely anything to get their kids ahead. And their kids grow up believing that it is OK to play every potential advantage, lie or not. We have some in our county, although I choose a school district in which it is less prevalent.


I replied to your previous "dog eat dog" description of parents in NYC earlier in the thread. I am from NYC, have lived in various parts of the city and have a large extended family scattered throughout the city and have, myself, not seen or heard anything that supports this assessment of NYC parents. Actually, many parents here see an ADHD or ASD diagnosis as a stigma here and, even if their kid receives this diagnosis from a private assessment, hide it from the school. There are many services available here, but they are quite hard to get. A school will not give a kid any testing accommodations if there is no evidence that whatever issues whatever doctor claims the child has effects their academic performance. I know kids personally who have ASD who do not receive any services at all.

The way some very pushy/ ambitious parents here try to give their kids an advantage is more through lots of tutoring or test prep places. There are many expensive test prep places here in the city. I have met a couple of these types of parents, but most I know are not this type of parent. I'm sure these parents exist in all sorts of places.


I think that once a parent starts flying the helicopter, you have no way to know where it will fly. In our county, I am hearing that there are families trying to take advantage of the extra time, but I will say again that I have not met any of them (or, at least, that I am aware of). I do not think these things are the norm, I am just admitting they seem to exist and MIGHT be at play for the OP.


I hear what you're saying, but I disagree that it's a "thing" in NYC above other places.


Point taken. I was basing my comment on things my sister-in-law (who lives in NYC) has told me, but I readily admit that isn't scientific.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


InThisTogether
Veteran
Veteran

User avatar

Joined: 3 Jul 2012
Age: 58
Gender: Female
Posts: 2,709
Location: USA

03 Oct 2015, 9:53 pm

Just throwing my 2 cents in.

I have lived all over the US. Literally all over (former military), including NYC at one point. As a non-native New Yorker, the "average" New Yorker seemed more aggressive to me than the "average" Southerner, Midwesterner, and West Coaster. But the most aggressive people in each area are equally aggressive. Most New Yorkers do not view themselves to be particularly aggressive, but if you are not from NYC (or the surrounding orbits), you will likely not agree with them. I have lived in major cities in each area, too, and the only one that seemed about the same was the Los Angeles area. The difference I noticed there, though, is that people are superficially nice. Most NYCer's, from my experience, find being superficially nice distasteful. They think it is important to be "real," even if being "real" means you may come off as being "rude." It is my perception that NYCers also believe that as long as they view their intention to be "good," they are not as concerned about how the other person feels. As contrasted to the Midwest, where it seems (to me) that there is much more focus placed on how the other person will perceive your actions regardless of your intent, which leads to some pretty interesting things, too.

I did not find NYers in general to be particularly health conscious. Actually, I moved from SoCal to NY and was pretty much appalled by how unhealthy NYers seemed compared to what I was used to. So, I don't know about parents pushing their "healthy" ways on others. My perception was that the City was less health conscious than other places I have lived.

Not that any of this is even relevant to the OP :lol:


_________________
Mom to 2 exceptional atypical kids
Long BAP lineage


Fitzi
Veteran
Veteran

User avatar

Joined: 5 Jul 2013
Gender: Female
Posts: 545

04 Oct 2015, 8:14 am

InThisTogether wrote:
Just throwing my 2 cents in.

I have lived all over the US. Literally all over (former military), including NYC at one point. As a non-native New Yorker, the "average" New Yorker seemed more aggressive to me than the "average" Southerner, Midwesterner, and West Coaster. But the most aggressive people in each area are equally aggressive. Most New Yorkers do not view themselves to be particularly aggressive, but if you are not from NYC (or the surrounding orbits), you will likely not agree with them. I have lived in major cities in each area, too, and the only one that seemed about the same was the Los Angeles area. The difference I noticed there, though, is that people are superficially nice. Most NYCer's, from my experience, find being superficially nice distasteful. They think it is important to be "real," even if being "real" means you may come off as being "rude." It is my perception that NYCers also believe that as long as they view their intention to be "good," they are not as concerned about how the other person feels. As contrasted to the Midwest, where it seems (to me) that there is much more focus placed on how the other person will perceive your actions regardless of your intent, which leads to some pretty interesting things, too.

I did not find NYers in general to be particularly health conscious. Actually, I moved from SoCal to NY and was pretty much appalled by how unhealthy NYers seemed compared to what I was used to. So, I don't know about parents pushing their "healthy" ways on others. My perception was that the City was less health conscious than other places I have lived.

Not that any of this is even relevant to the OP :lol:


Who you calling aggressive?! !! ! :wink:

I agree that we do come off as more aggressive than other places, in general. I lived in other states (as a young adult) for brief spells, and people commented that I spoke "too fast" and at a louder volume than they were used to, and that I also walked/ moved way faster. Where, here in NYC, I do not stand out for any of those things at all. I also noticed in Other places (where I have visited), that people did not seem to appreciate sarcasm like they do in NYC.

However, once I was confused about which direction to take in the West Village (there are really old streets there that branch off in odd ways), and as I was speaking to my friend and trying to figure it out, some model types (who I guessed had moved here to launch their career) were scoffing and sneering about it (as if we were stupid tourists). However, a local guy approached us and happily gave us directions. I find this example to be an accurate picture of native New Yorkers getting an unfair "rude" reputation by people who are not necessarily from here. I do not mean to sound like I do not like people who came here from other places, not at all. Most of my friends here were not originally from here.

The overly health conscious NYC parent I was referring to is a stereotype particularly about Park Slope parents, and other areas of Brooklyn. It is somewhat accurate (though, again, not to the extent it is portrayed). The stereotype is that the parents are "freaking out" about their kids ever eating sugar, serve toasted kale chips for a snack, and act like their kids are being poisoned if they are served non organic.



YippySkippy
Veteran
Veteran

User avatar

Joined: 26 Feb 2011
Age: 45
Gender: Female
Posts: 3,986

04 Oct 2015, 8:47 am

Time for me to move to NYC. :lol: