Latest CDC number 1 in 36 children diagnosed with autism

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The tone of this whole thread is really disappointing, coming from someone who was recently diagnosed as a 38 year old successful adult. Having a diagnosis and knowing why the world has always seemed so different for me means the world. But my “quirks” are precisely why I was very good at school and now have a very good job. There’s some argument that parts of autism were evolutionary advantageous. No, I don’t want a cure. I am happy diagnosis rates are going up so that kids don’t have to wait until nearly 40 to understand themselves. Acceptance and changing norms is absolutely what’s needed. Let kids unmask.

LOL you have got to be a white man. For some of our kids “unmasking” in the wrong situation is literally a matter of life and death.

right? unmasking means my kid falls onto the Metro tracks because he paces and stims and doesn’t watch his surroundings.

DP here, with an ES son w/HFA. This comment made me stop and think, because I also have a child who would get hit by a bus if left to his own devices. We spend a lot of time on paying attention to our surroundings and working on remembering all of the steps involved in crossing the street for instance. But I never thought of paying attention in public as "masking".

[Anonymous]

Anonymous wrote:The tone of this whole thread is really disappointing, coming from someone who was recently diagnosed as a 38 year old successful adult. Having a diagnosis and knowing why the world has always seemed so different for me means the world. But my “quirks” are precisely why I was very good at school and now have a very good job. There’s some argument that parts of autism were evolutionary advantageous. No, I don’t want a cure. I am happy diagnosis rates are going up so that kids don’t have to wait until nearly 40 to understand themselves. Acceptance and changing norms is absolutely what’s needed. Let kids unmask.

You have a very, very mild case of ASD. So this is all from your perspective. If you were a mother watching your child struggle their whole life, you would feel differently. So yes, some people wish for a cure and to prevent it. Your experience is one experience- you don’t get to tell others how they should feel e.g. “I have a great job and I am quirky! Let’s celebrate autism!” Nope.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The tone of this whole thread is really disappointing, coming from someone who was recently diagnosed as a 38 year old successful adult. Having a diagnosis and knowing why the world has always seemed so different for me means the world. But my “quirks” are precisely why I was very good at school and now have a very good job. There’s some argument that parts of autism were evolutionary advantageous. No, I don’t want a cure. I am happy diagnosis rates are going up so that kids don’t have to wait until nearly 40 to understand themselves. Acceptance and changing norms is absolutely what’s needed. Let kids unmask.

LOL you have got to be a white man. For some of our kids “unmasking” in the wrong situation is literally a matter of life and death.

right? unmasking means my kid falls onto the Metro tracks because he paces and stims and doesn’t watch his surroundings.

DP here, with an ES son w/HFA. This comment made me stop and think, because I also have a child who would get hit by a bus if left to his own devices. We spend a lot of time on paying attention to our surroundings and working on remembering all of the steps involved in crossing the street for instance. But I never thought of paying attention in public as "masking".

I think it’s a kind of masking. For my son, it’s not only safety, but also safety of others (he might walk into them on a crowded platform). But it’s also addressing odd behavior that can make people uncomfortable and fearful of him in public. He’s small now, but a tall adult man pacing in wide circles on a subway platform will be seen differently. So yeah he has to “mask” that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The tone of this whole thread is really disappointing, coming from someone who was recently diagnosed as a 38 year old successful adult. Having a diagnosis and knowing why the world has always seemed so different for me means the world. But my “quirks” are precisely why I was very good at school and now have a very good job. There’s some argument that parts of autism were evolutionary advantageous. No, I don’t want a cure. I am happy diagnosis rates are going up so that kids don’t have to wait until nearly 40 to understand themselves. Acceptance and changing norms is absolutely what’s needed. Let kids unmask.

LOL you have got to be a white man. For some of our kids “unmasking” in the wrong situation is literally a matter of life and death.

right? unmasking means my kid falls onto the Metro tracks because he paces and stims and doesn’t watch his surroundings.

DP here, with an ES son w/HFA. This comment made me stop and think, because I also have a child who would get hit by a bus if left to his own devices. We spend a lot of time on paying attention to our surroundings and working on remembering all of the steps involved in crossing the street for instance. But I never thought of paying attention in public as "masking".

I think it’s a kind of masking. For my son, it’s not only safety, but also safety of others (he might walk into them on a crowded platform). But it’s also addressing odd behavior that can make people uncomfortable and fearful of him in public. He’s small now, but a tall adult man pacing in wide circles on a subway platform will be seen differently. So yeah he has to “mask” that.

I have a "man sized" early teen who's emotionally and socially several years behind his age. He's already been uninvited from get togethers with kids at his social/emotional level because of his size and we definitely have a lot of concern over his physical safety as he gets older though it does help that he is white and attractive looking. We are working with him on identifying the situations in which he needs to be more locked down in regards to his behavior, but it's scary having a tall, male child who gets loud and paces when he's upset and doesn't really get that it's unsafe.

[Anonymous]

Anonymous wrote:

Anonymous wrote:The tone of this whole thread is really disappointing, coming from someone who was recently diagnosed as a 38 year old successful adult. Having a diagnosis and knowing why the world has always seemed so different for me means the world. But my “quirks” are precisely why I was very good at school and now have a very good job. There’s some argument that parts of autism were evolutionary advantageous. No, I don’t want a cure. I am happy diagnosis rates are going up so that kids don’t have to wait until nearly 40 to understand themselves. Acceptance and changing norms is absolutely what’s needed. Let kids unmask.

You have a very, very mild case of ASD. So this is all from your perspective. If you were a mother watching your child struggle their whole life, you would feel differently. So yes, some people wish for a cure and to prevent it. Your experience is one experience- you don’t get to tell others how they should feel e.g. “I have a great job and I am quirky! Let’s celebrate autism!” Nope.

+1000

[Anonymous]

When I was growing up in the late eighties and nineties there were several kids that were described as strange, quirky or weird. As the parent of an autistic child I now realize that at least some of those children must have been on the spectrum. There was zero awareness or support back then.

[Anonymous]

Anonymous wrote:

Anonymous wrote:The tone of this whole thread is really disappointing, coming from someone who was recently diagnosed as a 38 year old successful adult. Having a diagnosis and knowing why the world has always seemed so different for me means the world. But my “quirks” are precisely why I was very good at school and now have a very good job. There’s some argument that parts of autism were evolutionary advantageous. No, I don’t want a cure. I am happy diagnosis rates are going up so that kids don’t have to wait until nearly 40 to understand themselves. Acceptance and changing norms is absolutely what’s needed. Let kids unmask.

You have a very, very mild case of ASD. So this is all from your perspective. If you were a mother watching your child struggle their whole life, you would feel differently. So yes, some people wish for a cure and to prevent it. Your experience is one experience- you don’t get to tell others how they should feel e.g. “I have a great job and I am quirky! Let’s celebrate autism!” Nope.

+100 and this silencing of the other end of the spectrum and their caregivers is why the expanding the definition can be problematic.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Is the increase mostly in mild forms? Because that's where most diagnostic progress has been made. If we see an increase in severe forms, then that's cause to worry about environmental causes.

Even if it is, shouldn’t we still question why so many kids are diagnosed and whether any of it can be prevented?

+1

Autoimmune disorders are on the rise, allergies are on the rise, asthma is on the rise.

I wonder if we are going to get to 1 in 5 kids with autism and people will still say it's all better detection, broadening definition and mild forms. When will it be enough for people to care about environmental triggers?

None of these are comparable and all have medical evidence and often genetic.

I think they are comparable. There are doctors who believe these are all related to autoimmune disorders. Kids with ADHD and autism are much more likely to get PANS/PANDAS. There’s a high correlation between Celiac and ADHD, etc.

It seems related to me. Kids with ASD have GI issues, disproportionately. There’s the interesting fever effect, in which some kids become more “typical” behaviorally, when they have a fever. There is also a pallor that I see in kids with ADHD and ASD—nobody has been able to explain to me what it is, but it’s noticeable.

Oh ffs. Yes, the pallor. That’s because they are actually vampires.

Look, there was a big story recently about a woman who noticed that patients with Parkinson's had a distinctive odor (her husband had Parkinsons and she smelled it in waiting rooms with other patients. She had to push and push, and finally someone studied it and it is true and potentially useful to early diagnosis:

https://www.npr.org/sections/health-shots/2020/03/23/820274501/her-incredible-sense-of-smell-is-helping-scientists-find-new-ways-to-diagnose-di

I have spent a lot of time around kids with ASD and notice that they often "look" less healthy looking than their siblings who don't have ASD. I have seen it on a lot of kids, including my own. Yet IME, once ASD is diagnosed, nobody is interested in any physical issues. Low vitamin levels, constipation, eczema -- it's all treated individually as having nothing to do with the ASD. Yet there are clearly things going on in the kid's body that are atypical. I hope someday we'll know.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Is the increase mostly in mild forms? Because that's where most diagnostic progress has been made. If we see an increase in severe forms, then that's cause to worry about environmental causes.

Even if it is, shouldn’t we still question why so many kids are diagnosed and whether any of it can be prevented?

+1

Autoimmune disorders are on the rise, allergies are on the rise, asthma is on the rise.

I wonder if we are going to get to 1 in 5 kids with autism and people will still say it's all better detection, broadening definition and mild forms. When will it be enough for people to care about environmental triggers?

None of these are comparable and all have medical evidence and often genetic.

I think they are comparable. There are doctors who believe these are all related to autoimmune disorders. Kids with ADHD and autism are much more likely to get PANS/PANDAS. There’s a high correlation between Celiac and ADHD, etc.

It seems related to me. Kids with ASD have GI issues, disproportionately. There’s the interesting fever effect, in which some kids become more “typical” behaviorally, when they have a fever. There is also a pallor that I see in kids with ADHD and ASD—nobody has been able to explain to me what it is, but it’s noticeable.

Oh ffs. Yes, the pallor. That’s because they are actually vampires.

Look, there was a big story recently about a woman who noticed that patients with Parkinson's had a distinctive odor (her husband had Parkinsons and she smelled it in waiting rooms with other patients. She had to push and push, and finally someone studied it and it is true and potentially useful to early diagnosis:

https://www.npr.org/sections/health-shots/2020/03/23/820274501/her-incredible-sense-of-smell-is-helping-scientists-find-new-ways-to-diagnose-di

I have spent a lot of time around kids with ASD and notice that they often "look" less healthy looking than their siblings who don't have ASD. I have seen it on a lot of kids, including my own. Yet IME, once ASD is diagnosed, nobody is interested in any physical issues. Low vitamin levels, constipation, eczema -- it's all treated individually as having nothing to do with the ASD. Yet there are clearly things going on in the kid's body that are atypical. I hope someday we'll know.

I can’t even express how stupid that is. Yeah sure let’s dx kids with autism because they are pale because of some crap research that claims you can smell Parkinsons.

I just can’t even. I cannot.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Is the increase mostly in mild forms? Because that's where most diagnostic progress has been made. If we see an increase in severe forms, then that's cause to worry about environmental causes.

Even if it is, shouldn’t we still question why so many kids are diagnosed and whether any of it can be prevented?

+1

Autoimmune disorders are on the rise, allergies are on the rise, asthma is on the rise.

I wonder if we are going to get to 1 in 5 kids with autism and people will still say it's all better detection, broadening definition and mild forms. When will it be enough for people to care about environmental triggers?

None of these are comparable and all have medical evidence and often genetic.

I think they are comparable. There are doctors who believe these are all related to autoimmune disorders. Kids with ADHD and autism are much more likely to get PANS/PANDAS. There’s a high correlation between Celiac and ADHD, etc.

It seems related to me. Kids with ASD have GI issues, disproportionately. There’s the interesting fever effect, in which some kids become more “typical” behaviorally, when they have a fever. There is also a pallor that I see in kids with ADHD and ASD—nobody has been able to explain to me what it is, but it’s noticeable.

Oh ffs. Yes, the pallor. That’s because they are actually vampires.

Look, there was a big story recently about a woman who noticed that patients with Parkinson's had a distinctive odor (her husband had Parkinsons and she smelled it in waiting rooms with other patients. She had to push and push, and finally someone studied it and it is true and potentially useful to early diagnosis:

https://www.npr.org/sections/health-shots/2020/03/23/820274501/her-incredible-sense-of-smell-is-helping-scientists-find-new-ways-to-diagnose-di

I have spent a lot of time around kids with ASD and notice that they often "look" less healthy looking than their siblings who don't have ASD. I have seen it on a lot of kids, including my own. Yet IME, once ASD is diagnosed, nobody is interested in any physical issues. Low vitamin levels, constipation, eczema -- it's all treated individually as having nothing to do with the ASD. Yet there are clearly things going on in the kid's body that are atypical. I hope someday we'll know.

I can’t even express how stupid that is. Yeah sure let’s dx kids with autism because they are pale because of some crap research that claims you can smell Parkinsons.

I just can’t even. I cannot.

DP here. I have no idea about pale kids and ASD but the Parkinsons thing is no joke. https://www.scientificamerican.com/article/a-supersmeller-can-detect-the-scent-of-parkinsons-leading-to-an-experimental-test-for-the-illness/

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The tone of this whole thread is really disappointing, coming from someone who was recently diagnosed as a 38 year old successful adult. Having a diagnosis and knowing why the world has always seemed so different for me means the world. But my “quirks” are precisely why I was very good at school and now have a very good job. There’s some argument that parts of autism were evolutionary advantageous. No, I don’t want a cure. I am happy diagnosis rates are going up so that kids don’t have to wait until nearly 40 to understand themselves. Acceptance and changing norms is absolutely what’s needed. Let kids unmask.

Following the rules isn't "masking". Having a public face and a private face isn't masking either. It's getting along in the world.

Yea, no. These “rules” were set by one type of person. Masking is exhausting and leads to depression and anxiety. Forcing conformity for ND people is exactly the issue.

This is such absolute bullshit. There may be a small percentage of people that have depression and anxiety because they are "masking", but the vast majority of children that are suffering autism/adhd/anxiety/depression are suffering because there is something WRONG. It is never going to be normal that so many children are incapable of functioning at home, in school, in society at large. Every other post in some forums I read is about a child with extreme anxiety, depression, etc. It's NOT OK, and the concept that it may be because society doesn't "understand" them, is ridiculous.

The fact that a few people with autism can claim they have some advantage IN ADDITION TO having autism, in no way outweighs the extreme disadvantages that is apparent if anyone cares to look. There are families destroyed, futures that are uncertain, financial wreckage on both a personal and societal scale, and last not certainly not least, a huge amount of children and now adults that are suffering BECAUSE of an illness that affects their brain. If the same number of people were affected by an illness that affected their heart, for example, it would be a very very different story.

[Anonymous]

Anonymous wrote:I don't dispute the adult with autism's experience that the autism diagnosis at a later age was helpful and healing.

I do not like the lumping together and, yes, watering down of many people's autism's diagnosis that is truly and irrevocably life-altering and not in the "feel good after school special kind of way." The kind that many people experience where one can never live independently, hold a job, or perhaps communicate effectively.

My child's middle school went on lock down this week because an 8th grade male (I say this because of size) with autism had an emotional reaction that he could not control while in the hallway right before a passing period. The SN teacher chose to lockdown the school for five minutes so she could safely get the student to a quiet place, which she did successfully.

My kid, in a classroom where the teacher had stepped out early, was in the room with kids only and they had to lock the door, barricade it, turn off the lights, and not know when the shooter was coming by.

I definitely support the SN teacher's decision and the autistic student's needs, as well as my kid going through the fear of the lock down all at the same time.

BUT, I don't support of the concept of quirky and "that's what makes me good at my job" in the same paragraph.

I'm sorry this happened to both the child with autism and the rest of the school. But it's a good example why we need to further the research into the true cause and help these children which will in turn help society as a whole. Quirky is one thing, but there is a lot more to it than that for most. And there is no way anyone can say that it makes sense to let this true cause be undiscovered, as the ramifications for everyone are extremely important. Just saying "my kid likes to stim and isn't bothering anyone" is still not ok, because what if what is causing them to stim is also something that will cause other illnesses in their body, cause them to not digest food properly, eat properly, function as an adult properly, etc? It's not fair to anyone....least of all the person suffering. EVEN IF they have wonderful, incredible things about them in addition to the negative things. It would be inhumane to not investigate the causes and help this illness.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Autism is a medical condition causing brain inflammation. I wonder how many years it will take for this to be accepted ? How many kids will suffer, how many families will suffer?

There are so many groups trying to normalize autism, saying it's not a bad thing. That will hinder the search for a cause and a cure or prevention.

+100

I also think they'll eventually find that a least a large subset of ASD is inflammatory. PANDAS-caused ASD behavior is clearly inflammatory (and to an outsider, the behavior in that transient period looks identical to ASD). And small scale studies of kids diagnosed with ASD show statistically significant improvement in symptoms on steroid treatment (regression once the steroids inevitably have to be stopped).

I’m not sure what’s worse: this kind of pseudoscience bullshit pushing harmful treatments (steroids are no joke); or the adult “autism”
community interfering with the development and deployment of effective therapies; or the online self-diagnoses “autism community” blathering on about masking.

FWIW my DS supposedly on the spectrum is exactly like his dad, cousin and uncle. It’s not inflammation or a virus.

The fact that there is a genetic component does not at all rule out the fact that environment could play a role. Environmental conditions can affect how our genes are expressed. It is called epigenetics. You can be predisposed to something genetically and then certain factors will either tip you over or not. Absolutely a possibility here.

[Anonymous]

This whole thread is downright depressing - just goes to show how unaware we are about this and how much we are caught on labels. It is hard though and I empathize because we want to know the causes and some sort of treatment - both of which are still up in the air. The whole mom blame thing is also a bunch of nonsense. I wasn't at an old maternal age, I was healthy, no underlying issues, nor obesity, blah blah, was extremely careful with what I ate, no history of ASD, but one of my kids turned out ASD Level 1 - we're still stunned sometimes because it came as a shock and yes we plan to reassess but we've just learned to let go of the label, the articles, the nonsense in the media - yes including Elon Musk and just focus on whatever needs our kid needs right now - and if you open your eyes there are plenty of NT kids which are getting plenty of supports in school and a lot of NT kids who aren't assessed at all or will be later on --- it's just a very isolating journey frankly...except in forums like this where it's every man for himself.

[Anonymous]

Anonymous wrote:This whole thread is downright depressing - just goes to show how unaware we are about this and how much we are caught on labels. It is hard though and I empathize because we want to know the causes and some sort of treatment - both of which are still up in the air. The whole mom blame thing is also a bunch of nonsense. I wasn't at an old maternal age, I was healthy, no underlying issues, nor obesity, blah blah, was extremely careful with what I ate, no history of ASD, but one of my kids turned out ASD Level 1 - we're still stunned sometimes because it came as a shock and yes we plan to reassess but we've just learned to let go of the label, the articles, the nonsense in the media - yes including Elon Musk and just focus on whatever needs our kid needs right now - and if you open your eyes there are plenty of NT kids which are getting plenty of supports in school and a lot of NT kids who aren't assessed at all or will be later on --- it's just a very isolating journey frankly...except in forums like this where it's every man for himself.

Totally get that. And there should be zero guilt. Moms’ choices and weight, age, etc. are not the problem. It is industrial pollution, endocrine disrupting chemicals everywhere, poorly farmed food, etc etc etc - by the time mom gets pregnant it is not like her choices make the difference. The damage is done by the world around us. We need research and regulation.