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.

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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.

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.

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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.

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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.

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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.

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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.

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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 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.

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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 wrote:

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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 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.

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.