43% Rise in Autism rates in 4 years in New Jersey

[Pen]

 

2 hours ago, maize said:

The human mind looks for patterns and links and causes, but the fact that we perceive a causative link doesn't mean it is real. This is what scientific controlled studies and statistical analysis have been designed to help us sort out.

 

The human mind also tends to look to discount and ignore, to overlook and to deny, what it has not yet learned about. 

[maize]

15 minutes ago, Pen said:

 

I think they do know about as much as it can be known.  There was a law suit over it and enough data from enough people who have been harmed (almost certainly) got brought out for it to move into more probable than not realm.  As well, the manufacturer’s own warnings about using it.  

It is true of course that it is hard to know anything for certain and even a car accident that apparently leaves someone with mental retardation could be disputed — indeed in a law suit probably would be disputed—as not having been the cause.  

If you look up pesticides and child brain development you will find a great deal more information to show that it is not speculative.  

There were also pictures drawn by children in communities downwind of herbicide areas that showed marked differences (very primitive looking ) compared to healthier non downwinders.  

Oregon, the state I am in now, was at some time in past years in news as being highest for autism—and just looking around it seems really high , not just a statistical glitch, but where it appears more like 1 in 25 kids in my area would meet rather extreme levels with outbursts and impaired communication, not subtle “high functioning”.  It IS speculative to attribute some of this as possibly related to high herbicide use.  But it is not speculative to understand that herbicide use affects brain development.

This makes sense.

We just need to be careful about stating as fact cause and effect relations that aren't really provable. For instance, there is lots of research linking lead exposure (at any measurable level) to increased incidence of ADHD but that doesn't mean I can say my child's ADHD was caused by lead exposure and wouldn't have happened otherwise.

There are certainly some cases where cause and effect are strongly supported statistically. 

[Pen]

Another potential and yes, speculative, issue btw, especially in in some strongly affected areas, perhaps “epigenetic” could be long term multi generational effects of nuclear radiation such as from atmospheric testing.  I don’t know that there’s any geographical correlation between that and some areas with higher rates of the whole alphabet soup of issues, but the whole planet has been different from that in last half century-plus.  

[Pen]

8 hours ago, Tanaqui said:

ut with no sense of correct register in speech, and a persistent case of what some of my autistic friends call "autistic accent syndrome

 

Could you elaborate on “autistic accent syndrome”?

[Pen]

@maize for example:

https://www.iitc.org/wp-content/uploads/2013/07/E-Guillette-Rio-Yaqui-Children-Study-1-wdrawings.pdf

[maize]

1 hour ago, Pen said:

 

Could you elaborate on “autistic accent syndrome”?

I was intrigued as well and found this:

https://adc.bmj.com/content/98/Suppl_1/A36.1

People sometimes think my children are speaking in a British accent but I think it is mostly because of articulation difficulties, especially with R sounds.

[BooksandBoys]

1 hour ago, maize said:

I was intrigued as well and found this:

https://adc.bmj.com/content/98/Suppl_1/A36.1

People sometimes think my children are speaking in a British accent but I think it is mostly because of articulation difficulties, especially with R sounds.

Fascinating. I’ve had several new acquaintances ask what country we’ve moved from after they meet my oldest. But, he doesn’t have any obvious speech challenges (passes speech evals with flying colors), it’s just something about the cadence/slight alteration in sound production.

edited to add: my oldest aspie failed his nuchal fold test...thanks for sharing that budding research. 

Edited April 13, 2019 by BooksandBoys

[Terabith]

Yeah, I sometimes wish someone who is a real autist could meet my family and tell me what they think.  I don't THINK I'm autistic, but I definitely have some sensory issues and some social issues.  I don't THINK my husband is autistic, but he's a physicist.  I'm pretty darn certain my oldest isn't autistic, but she had extensive speech therapy from EI and a bit as a preschooler for speech delay and then some atypical development (didn't ask questions) as well as OT for sensory stuff.  My younger one passes the ADOS but everyone who is familiar with autism spends much time with her thinks she's autistic (and I started asking people when she was 2), but it's hard to know where the line is between ASD and severe anxiety.  I don't think either of my parents or my sister are autistic, but my mother is pretty anxious.  I don't think my in laws are autistic, but my father in law, who is amazing and wonderful, is an engineer with a lot of stereotypical engineer traits, and my mother in law is....a strange woman but very friendly.  The southern term would be eccentric.  She doesn't give a darn about social conventions, but she comes across not as autistic but more as a free spirited artist formed by the 60's.  

[BeachGal]

On 4/12/2019 at 11:34 AM, Katy said:

https://www.sciencedaily.com/releases/2019/04/190411131538.htm

This has got to be something environmental.  Folic Acid?

 

Could be. Possibly something affecting a mother’s/child’s microbiome. Maybe glyphosate or other chemicals?

Results from a promising study: “Autism symptoms reduced nearly 50 percent two years after fecal transplant.”

https://www.sciencedaily.com/releases/2019/04/190409093725.htm

Serotonin, vitamin d, and sulforophane may also be pieces of the puzzle.

Rhonda Patrick and Bruce Ames’ study of the role vitamin d plays in the synthesis of serotonin, oxytocin and vasopressin:

https://www.sciencedaily.com/releases/2014/02/140226110836.htm

This is a small study using sulforophane on autistic boys that showed some promise. The most reliable supplement sold in the US would probably be Avmocal, if anyone is curious. It’s about $1 per pill but it’s what Johns Hopkins uses in their sulforophane studies.

https://www.sciencedaily.com/releases/2014/10/141013152608.htm

[Pen]

36 minutes ago, BeachGal said:

 

Could be. Possibly something affecting a mother’s/child’s microbiome. Maybe glyphosate or other chemicals?

Results from a promising study: “Autism symptoms reduced nearly 50 percent two years after fecal transplant.”

https://www.sciencedaily.com/releases/2019/04/190409093725.htm

Serotonin, vitamin d, and sulforophane may also be pieces of the puzzle.

Rhonda Patrick and Bruce Ames’ study of the role vitamin d plays in the synthesis of serotonin, oxytocin and vasopressin:

https://www.sciencedaily.com/releases/2014/02/140226110836.htm

This is a small study using sulforophane on autistic boys that showed some promise. The most reliable supplement sold in the US would probably be Avmocal, if anyone is curious. It’s about $1 per pill but it’s what Johns Hopkins uses in their sulforophane studies.

https://www.sciencedaily.com/releases/2014/10/141013152608.htm

 

Gut biome for sure seems involved in a lot if not all autism or “autism “.

 

word of mouth anecdotes with positive things to say about broccoli sprouts which could fit with sulforophane.

[Innisfree]

5 hours ago, maize said:

People sometimes think my children are speaking in a British accent but I think it is mostly because of articulation difficulties, especially with R sounds.

People say the same thing about my dds, for the same reason, I think.

One thing I have wondered: people often point to a relatively pedantic or unusually advanced vocabulary as evidence for being on the spectrum. But I'm not sure how to distinguish that from the normal effect of having parents with large vocabularies.

Teachers told my parents they needed to teach me to talk like a child when I was in kindergarten. Other adults asked where I got my accent, too, when I'd always lived in the name area. My parents always laughed about the accent remarks, and the vocabulary remarks seemed foolish to them: why would you not be pleased that a child could use an adult vocabulary?

Now I can see the social utility of code-switching, a point which eluded them at the time. But maybe we were all a bit autistic.

[Hilltopmom]

Oh my gosh!!!

one of my Littles has a British accent, she’s being evaluated soon for ASD- I’d bet money she’s on the spectrum. I didn’t know that was a thing!

we get asked about her accent all the time

Edited April 13, 2019 by Hilltopmom

[Ausmumof3]

On 4/13/2019 at 7:20 AM, wendyroo said:

Anecdotally, I think my kids support the idea that autism has a strong genetic component with close ties to several other mental health and developmental issues.

It was very clear to everybody (parents, grandparents, pediatrician, etc) that something was going on with DS1 pretty much from the time he was born.  Even before that, he "failed" the nuchal fold ultrasound which studies are now showing may be associated with autism and other issues.  He was later diagnosed with autism, ADD and anxiety disorder.

DH and I have searched high and low in our family trees, and have not found ANY mental illness or developmental delays.  But of our four children, 3 have now been diagnosed with ADD, ADHD, ASD, ODD and/or anxiety...two of our children have a trifecta of conditions, and I expect the third to add at least one more diagnosis in the future.  I would not be at all surprised if child #4 was also diagnosed when she gets older, though I feel almost certain she does not have autism.

Additionally, ALL FOUR of our children have significant, persistent speech and language delays.  Again, DH and I have no such history, and we cannot find any similar issues among our relatives.  It just seems to be an unfortunate quirk of our shared genetics.  We have taken two parents with strong language, mental health and executive function skills, and produced four children with severe impairments in those categories.  Yes, only one of the four has manifested diagnostically as autism, but I think it is clear that many of the same genetic "glitches" are affecting all of them very similarly, even if the DSM-5 labels them slightly differently.

Wendy

 

To me that would seem like an indicator of something environmental going on?  The fact that there’s no genetic history of anything?

most of the families I know with kids with autism seem to have a grandparent who is not diagnosed with anything but is eccentric in the extreme.  It seems unusual to have nothing in the background.

im not trying to give offence, as I realise this could be a sensitive topic, just wondering.  It’s hard to navigate these conversations.

[Ausmumof3]

21 hours ago, wendyroo said:

Well, except that if it is significant that 3 of my 4 had abnormal nuchal fold ultrasounds, that means that whatever factors would eventually lead to the plethora of diagnoses were already in effect at 12 weeks gestation.  Obviously, there are environmental factors that cause abnormalities that early, but I was not drinking, smoking, eating lead paint chips, or living under extreme stress.  I find it hard to believe that my fetus' early environment was that significantly different than that of any of the neurotypical fetus' gestating around the same time in my community.  And yet, DH and I have clearly produced children who are significantly more non-neurotypical than the average rate in our community.

But, more than that, I was originally speaking to the idea that I think it is helpful to look at the genetics of mental illness and developmental differences more broadly and inclusively rather than singling out the genetics of autism.  I think we do ourselves a disservice if we look at a family like mine and see one autistic individual and see him as a genetic outlier within the family.  The picture looks very different if we broaden our scope and see that while he is the only autistic sibling, that really all four of them mentally and behaviorally form a fairly tight cluster.  The differences between them that lead to their various diagnoses, are actually fairly small compared to the differences that set all of them apart from neurotypical children.

Wendy

Isn’t there a study that shows that your eggs etc can be impacted significantly before conception that can have ongoing effects!  I thought there was even one indicating that what happens in the grandparents generation can effect the grandkids?  But maybe that’s no longer credible?  Something to do with holocaust survivors or something.

environmental wouldn’t have to be anything you did like smoking or something.  Where we live there have been a lot of suburbs that have ended up with significant groundwater contamination that may produce unknown long term effects to the kids who grew up playing on the lawns watered with it.  There’s a town with massive ongoing social problems and widespread issues with high lead levels.  There’s areas near raaf bases and firefighting stations where significant contamination with chemicals found in firefighting foam has been detected.  In one case the fire station had a community garden and were cleaning out the fire tanks into it to save water.  The firefighters tested to have a high level of the carcinogenic chemical in their body.  While there’s no proven exposure problems there are problems when it’s ingested.

My parents were in agriculture and my uncle ended up working in gardens/landscaping all his life.  He now has the kind of cancer that’s been linked to tbe “perfectly safe” glysophate.  I know an ag scientist who says people are mad to buy fruit and veg from the old growers at the markets because many of them have old garden sheds stored with pesticides and fertilisers that are no longer used and will use them and not calculate concentrations or anything.  

I think it’s always going to be so hard to prove anything with so many of these things because usage is so wide spread, spray drift and water movement patterns are so random.

[Pen]

7 minutes ago, Ausmumof3 said:

Isn’t there a study that shows that your eggs etc can be impacted significantly before conception that can have ongoing effects!  I thought there was even one indicating that what happens in the grandparents generation can effect the grandkids?  But maybe that’s no longer credible?  Something to do with holocaust survivors or something.

 

Afaik that’s true.  Part of Epigenetics ideas.    

7 minutes ago, Ausmumof3 said:

 

environmental wouldn’t have to be anything you did like smoking or something.  Where we live there have been a lot of suburbs that have ended up with significant groundwater contamination that may produce unknown long term effects to the kids who grew up playing on the lawns watered with it.  There’s a town with massive ongoing social problems and widespread issues with high lead levels.  There’s areas near raaf bases and firefighting stations where significant contamination with chemicals found in firefighting foam has been detected.  In one case the fire station had a community garden and were cleaning out the fire tanks into it to save water.  The firefighters tested to have a high level of the carcinogenic chemical in their body.  While there’s no proven exposure problems there are problems when it’s ingested.

My parents were in agriculture and my uncle ended up working in gardens/landscaping all his life.  He now has the kind of cancer that’s been linked to tbe “perfectly safe” glysophate.  I know an ag scientist who says people are mad to buy fruit and veg from the old growers at the markets because many of them have old garden sheds stored with pesticides and fertilisers that are no longer used and will use them and not calculate concentrations or anything.  

I think it’s always going to be so hard to prove anything with so many of these things because usage is so wide spread, spray drift and water movement patterns are so random.

 

My Like didn’t mean I’m glad of any of this.  I think it’s all very important though.  

[WoolC]

7 hours ago, maize said:

I was intrigued as well and found this:

https://adc.bmj.com/content/98/Suppl_1/A36.1

People sometimes think my children are speaking in a British accent but I think it is mostly because of articulation difficulties, especially with R sounds.

 

This is so interesting.

 We've been asked where we have moved from as well by Sunday School teachers and such that have heard my boys talk.  Oldest has a ASD diagnosis.  My youngest doesn't have a diagnosis and I don't *think* he's autistic but he is definitely dealing with sensory, regulation and anxiety issues.  They both have the autistic accent.  Makes me wonder...

Edited April 13, 2019 by WoolC

[Ausmumof3]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4247335/#!po=0.675676

overview of research into pesticides and neurological development.

 

[Pen]

56 minutes ago, Ausmumof3 said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4247335/#!po=0.675676

overview of research into pesticides and neurological development.

 

 

Excellent article.  Thanks for linking it.  

I noted a couple of places where either Autism was mentioned or things that could easily affect behavior such as effects of pesticides on neurotransmitters, as well as on brain structure...

[Ausmumof3]

4 hours ago, Pen said:

 

Excellent article.  Thanks for linking it.  

I noted a couple of places where either Autism was mentioned or things that could easily affect behavior such as effects of pesticides on neurotransmitters, as well as on brain structure...

 

And it’s interesting how much variation there could be depending on timing of exposure and the developmental stage of the child at the time.  And you can see how slowing down certain areas of development slightly can have quite a pervasive effect.  But it makes it so hard to get conclusive answers because there’s so many variables at play.

[DesertBlossom]

23 hours ago, BeachGal said:

 

Could be. Possibly something affecting a mother’s/child’s microbiome. Maybe glyphosate or other chemicals?

Results from a promising study: “Autism symptoms reduced nearly 50 percent two years after fecal transplant.”

https://www.sciencedaily.com/releases/2019/04/190409093725.htm

Serotonin, vitamin d, and sulforophane may also be pieces of the puzzle.

Rhonda Patrick and Bruce Ames’ study of the role vitamin d plays in the synthesis of serotonin, oxytocin and vasopressin:

https://www.sciencedaily.com/releases/2014/02/140226110836.htm

This is a small study using sulforophane on autistic boys that showed some promise. The most reliable supplement sold in the US would probably be Avmocal, if anyone is curious. It’s about $1 per pill but it’s what Johns Hopkins uses in their sulforophane studies.

https://www.sciencedaily.com/releases/2014/10/141013152608.htm

I read somewhere that one of the predictors of autism was multiple rounds of antibiotics as an infant. We know that antibiotics can damage/alter the microbiome. Is there something in the environment damaging these children's immune systems, making them sick and making them prone to needing multiple rounds of antibiotics? 

[BeachGal]

20 hours ago, DesertBlossom said:

I read somewhere that one of the predictors of autism was multiple rounds of antibiotics as an infant. We know that antibiotics can damage/alter the microbiome. Is there something in the environment damaging these children's immune systems, making them sick and making them prone to needing multiple rounds of antibiotics? 

 

Multiple rounds of antibiotics are probably contributing to the problem but it could be more that a particular biochemical pathway is initiated that leads to autism and it might not be simply the antibiotics. Other factors might be necessary for this to happen. (Quite a few other drugs can cause problems with microbiota, too.)

Here's something cool. To help protect the microbiota, in the future doctor's might prescribe a type of slow-release activated charcoal called DAV 132 along with antibiotics (DAV for Da Volterra, the company's name). It's in clinical trials now. From their site, here's how it works.

Quote

 

During antibiotic courses, a fraction of the drug remains in the intestinal tract due to either partial absorption or recycling via the hepatobiliary route from the blood into the small intestine. These active antibiotic residues progress to the colon and provoke a profound dirsuption of the intestinal microbiota of patients. The microbiota balance is disturbed: several bacterial populations are erased whereas some strains proliferate. Microbiota disruption, called dysbiosis is a long-lasting consequence of antibiotics intake and patient’s microbiota will take months to recover.

In the late ileum, cecum and colon, DAV132 delivers a non-specific adsorbent which irreversibly captures antibiotics, before they could alter significantly the microbiota.

 

 

https://davolterra.com/dav132/

I think there's a lot of really great research nowadays and that we will at least have ways to reduce the symptoms of autism. 

 

Edited April 15, 2019 by BeachGal

[historically accurate]

21 hours ago, DesertBlossom said:

I read somewhere that one of the predictors of autism was multiple rounds of antibiotics as an infant. We know that antibiotics can damage/alter the microbiome. Is there something in the environment damaging these children's immune systems, making them sick and making them prone to needing multiple rounds of antibiotics? 

 

Anecdotedly (I don't think that's a word), my child who was on constant antibiotics due to a malformed kidney system is the only one who is most definitely NT. She was on a constant dose from age 3 months to 18 months in order to prevent kidney infections. She had 3 major infections during that time as well as 2 surgeries necessitating higher doses as well. My other two children took very few antibiotics as infants, although my oldest had recurring ear infections leading to tubes around 3 years. They are  both "quirky"; my oldest was not given a label, and we've never had the other diagnosed. 

Edited April 15, 2019 by beckyjo

[maize]

I have wondered what the effect might be of so many mothers (including me!) being treated for Group B Strep during labor to prevent it infecting the baby. Seems it would also potentially prevent the transmission of a lot of the good maternal bacteria the baby is supposed to pick up in its journey through the birth canal.

I'm not aware of anyone having studied this.

[Pen]

1 hour ago, maize said:

I have wondered what the effect might be of so many mothers (including me!) being treated for Group B Strep during labor to prevent it infecting the baby. Seems it would also potentially prevent the transmission of a lot of the good maternal bacteria the baby is supposed to pick up in its journey through the birth canal.

I'm not aware of anyone having studied this.

 

Interesting too in regard to I think there’s a higher rate of ASD following c-sections?

[Ausmumof3]

1 hour ago, maize said:

I have wondered what the effect might be of so many mothers (including me!) being treated for Group B Strep during labor to prevent it infecting the baby. Seems it would also potentially prevent the transmission of a lot of the good maternal bacteria the baby is supposed to pick up in its journey through the birth canal.

I'm not aware of anyone having studied this.

I don’t know but I do know someone who lost their baby with this 😞

[Ausmumof3]

Is there good evidence for causation with the antibiotics or just correlation?  Because it could be that kids with autism are more prone to infection rather than the antibiotics somehow causing or worsening symptoms.

I do know my kids with the most anxiety issues has also had the most antibiotics for various infections.

[DesertBlossom]

3 minutes ago, Ausmumof3 said:

Is there good evidence for causation with the antibiotics or just correlation?  Because it could be that kids with autism are more prone to infection rather than the antibiotics somehow causing or worsening symptoms.

I do know my kids with the most anxiety issues has also had the most antibiotics for various infections.

I don't think it's causation, but just a piece of a much bigger puzzle. 

Suzanne Humphries has an interesting series on YouTube called infant immunity. She addresses the many interventions, starting in pregnancy, and how they can impact overall health in susceptible infants. It's worth watching.

 

[Rosie_0801]

2 minutes ago, DesertBlossom said:

I don't think it's causation, but just a piece of a much bigger puzzle. 

 

I think it might be causation, but only in people who were genetically predisposed that way.

[maize]

2 hours ago, Ausmumof3 said:

I don’t know but I do know someone who lost their baby with this 😞

Which is why I have always opted for the IV antibiotics during labor (when I tested positive) in spite of my concerns. Babies do die from GBS.

[MistyMountain]

If more people in an area get diagnosed then it leads to more awareness which leads to even more getting diagnosed and that can especially happen in certain areas. I think it is more awareness in the case of the increase in NJ and not something in the environment especially over the last four years. NJ did have a lot of industry and pollution in the past but lead paint and pollution would not lead to an increase recently it would have been earlier. Things have improved in that area. The vaccine link has been studied more then anything and has been disproven plus there is nothing remarkable about the vaccine rates in NJ to lead to a NJ specific increase. If there is more awareness about the more subtle end of the spectrum and they start screening then you will see an increase in people getting diagnosed. It could have been just chalked up to quirkiness or adhd or something else before. Doctors also may be more aware themselves. In past years it was common to hear things like they are too social and they make eye contact so it cannot be autism. 

I do think autism itself could have environmental triggers in addition to it being genetic. There are probably lots of genes involved so it could very well not be seen in two people but when they get together it is seen in their children. Even in identical twins there are some differences based on what genes get turned on or off or mutations etc. 

Edited April 16, 2019 by MistyMountain

[Arcadia]

From KQED’s article  Why Identical Twins Don't Always Look the Same https://www.kqed.org/futureofyou/134603/why-identical-twins-dont-always-look-the-same

“But, actually, twins who start out with identical DNA always have slightly different DNA by the time they're born. And they also each use their DNA a bit differently too.

...

The original fertilized egg divides one or more times before the resulting clump of cells splits into two. Each clump of cells goes on to become one of the identical twins.

In this process of becoming a brand new baby with trillions of cells, the cells in each clump divide over and over again. DNA differences or mutations can happen any time a cell divides.

This is because a cell needs to copy its DNA before it can divide.  And while the cellular machinery is astonishingly good at copying DNA, it isn’t perfect. Every now and then it makes a mistake.

All of the new cells that come from the one with the mistake will have that same mistake. One consequence is that if it happens early, the baby will have more cells carrying that mistake.

...

This is sort of what happens in different people’s cells. One person's cells will read a gene one way and another person’s cells will read the exact same gene a different way. If that gene controls skin and/or eye color, then it will affect a person’s skin or eye color.

Here's how it might work: Near the genes there little chemical markers that can, for example, tell the cell how often to read a gene.

In the case of the twins, it could be that a set of these “epigenetic” marks is telling the cells of one twin to read her skin and eye color genes just a little bit. That means she would make less pigment and so have fair skin and blue eyes.

Or her sister might have marks on her DNA telling her cells to read her skin and eye color genes much more often. This would explain her brown eyes and cafe au lait skin.

What is fascinating about these epigenetic marks is that they're reversible. This means that, for example, the twin with blue eyes and fair skin may eventually end up with her sister’s eye and skin color. Which wouldn’t be surprising as it isn’t uncommon for babies to be born with lighter skin and eyes that darken over time.

If the girls' differences are the result of a mutation in the DNA itself, they'll probably go through life as different-looking identical twins. But if the reason is in how their cells read their DNA, these girls might someday look more identical than they do now.”

 

[Wheres Toto]

I've been in NJ my whole life, as have my kids.   I've had just one pediatrician in all that time though so I don't have vast experience with how they screen.  I do know my pediatrician takes her time and does many kinds of screenings, that I live near a huge child development center that does extensive testing, and most of the schools I know about have Early Intervention services that are considered to be worthwhile.  

NJ also has some of the wealthiest counties in the country so for many people finances aren't an issue, and as a small state with a high population density, we wouldn't have to travel far to access services.   Something that I'm only aware of from being on these boards and seeing people talk about how far they need to travel to specialists.   

Homeschooling is super-easy here and I know quite a few people who do it due to not wanting to vax, a lot who do it because of special needs that aren't being met in schools (Early Intervention services are considered great, the regular schools not-so-much in many cases but private services are extensively available).

I definitely think the increase is due to more awareness, more screenings and more access to services.

[Tanaqui]

Quote

I definitely think the increase is due to more awareness, more screenings and more access to services.

 

And, don't forget, changing diagnostic standards. The change from the DSM-IV to the DSM 5 wasn't as big as the change from the DSM-III to the DSM-IV, but it was still a change and it still affects who gets new diagnoses. (No typos there. I don't know why they ditched Roman numerals. I'd rather keep saying that than try to find out, too.)

Beckyjo, the spelling you're looking for is "anecdotally".

Everybody else, autism accent syndrome... which would more properly be termed "developmental foreign accent syndrome" if anybody was interested in categorizing and formally diagnosing it, which they're not - is not very well studied but is widely reported among autistics and our families. My gut feeling is that it's probably related halfway to auditory processing issues and halfway to general articulation issues (to go along with general poor coordination, which many of us have) with a soupcon of our very common difficulty in switching register (people are more likely to think you have an accent if you use words they're not used to) but... I'm really just guessing.

It means you go through life getting asked "where are you from?" an awful lot, and sometimes people stop you for three or five or seven minutes and try to guess. No, I'm really from Brooklyn. So's my mom. Yes, really. Yes, my whole life! (But if I go other places it happens less often... apparently, everybody out of NYC can hear my natural NYC accent, but inside NYC nobody can.) Now, here I've been railing about anecdata and, unfortunately, when it comes to autistic accent syndrome that's almost all we've got, but that's not my fault this time.

(Foreign accent syndrome in general is a condition which is considered exceedingly rare, but probably is only exceedingly underdiagnosed. A lot of conditions which happen to affect autistics turn out to be like that, like faceblindness or circadian rhythm disorders. The underdiagnosis probably is mostly because people try to cope and find workarounds rather than seek diagnoses for things like "I can't recognize people, even my best friends" or "Gosh, I sure do have trouble maintaining a normal sleep schedule" or "People think I talk funny". Of course, if you do try to seek a formal diagnosis it's even odds whether or not you'll get one or the person you talk to will look up the condition, say "This can't be developmental, it's a rare condition that only occurs after some sort of traumatic incident" and shoo you away. "Think horses, not zebras" is a very useful maxim right up until it isn't.)

Sorry I bailed on replies, btw - I was doing taaaaaaaxes. If I don't do my mother and sister's taxes, they simply don't get done. Indeed, they very nearly don't get done when I do them either, but in this one tiny area I am slightly more on the ball than either of them.

[Carrie12345]

6 hours ago, Where's Toto? said:

I've been in NJ my whole life, as have my kids.   I've had just one pediatrician in all that time though so I don't have vast experience with how they screen.  I do know my pediatrician takes her time and does many kinds of screenings, that I live near a huge child development center that does extensive testing, and most of the schools I know about have Early Intervention services that are considered to be worthwhile.  

NJ also has some of the wealthiest counties in the country so for many people finances aren't an issue, and as a small state with a high population density, we wouldn't have to travel far to access services.   Something that I'm only aware of from being on these boards and seeing people talk about how far they need to travel to specialists.   

Homeschooling is super-easy here and I know quite a few people who do it due to not wanting to vax, a lot who do it because of special needs that aren't being met in schools (Early Intervention services are considered great, the regular schools not-so-much in many cases but private services are extensively available).

I definitely think the increase is due to more awareness, more screenings and more access to services.

Our experience in 2002-ish was very parent (me, lol) driven.  I asked for my ped’s thoughts and he did a 20 minute or so eval, whipped up a diagnosis, and started to talk about drug options.  While I strongly believed in the dx, I was less than thrilled with the ped’s approach.

We wound up traveling to Hackensack for a thorough team evaluation that provided much more information.  Within a few years, decent therapies were becoming available in our less metro area. It was definitely remarkable to see how quickly (all things considered) doctors and therapists were responding to the numbers. 

[ktgrok]

17 hours ago, maize said:

I have wondered what the effect might be of so many mothers (including me!) being treated for Group B Strep during labor to prevent it infecting the baby. Seems it would also potentially prevent the transmission of a lot of the good maternal bacteria the baby is supposed to pick up in its journey through the birth canal.

I'm not aware of anyone having studied this.

Anecdote only, but I never had GBS, didn't have antibiotics in labor, and my son has ASD. 

15 hours ago, Ausmumof3 said:

Is there good evidence for causation with the antibiotics or just correlation?  Because it could be that kids with autism are more prone to infection rather than the antibiotics somehow causing or worsening symptoms.

I do know my kids with the most anxiety issues has also had the most antibiotics for various infections.

Wondering the same, if it is just more infection?

4 hours ago, Tanaqui said:

 

 

(Foreign accent syndrome in general is a condition which is considered exceedingly rare, but probably is only exceedingly underdiagnosed. A lot of conditions which happen to affect autistics turn out to be like that, like faceblindness or circadian rhythm disorders. The underdiagnosis probably is mostly because people try to cope and find workarounds rather than seek diagnoses for things like "I can't recognize people, even my best friends"

Is face blindness something that goes along with ASD? A moderate level of face blindness runs in my family....I have it, my Dad I think, and I know my sister does to an extent, probably not as severe as me. And my son with ASD as well. It causes a LOT of social anxiety, and eventually can lead to giving up even trying to make new friends/aquaintances because you know you won't recognize them next time anyway and who needs that stress. 

[Carrie12345]

1 hour ago, Ktgrok said:

Anecdote only, but I never had GBS, didn't have antibiotics in labor, and my son has ASD. 

Same.  
Also no c-section, no advanced maternal age, no early (or late, for that matter) birth, no illnesses while pregnant, and none of a whole bunch of other suggested elements.  :::shrug:::

 

[Ravin]

On 4/12/2019 at 7:39 PM, wendyroo said:

Well, except that if it is significant that 3 of my 4 had abnormal nuchal fold ultrasounds, that means that whatever factors would eventually lead to the plethora of diagnoses were already in effect at 12 weeks gestation.  Obviously, there are environmental factors that cause abnormalities that early, but I was not drinking, smoking, eating lead paint chips, or living under extreme stress.  I find it hard to believe that my fetus' early environment was that significantly different than that of any of the neurotypical fetus' gestating around the same time in my community.  And yet, DH and I have clearly produced children who are significantly more non-neurotypical than the average rate in our community.

But, more than that, I was originally speaking to the idea that I think it is helpful to look at the genetics of mental illness and developmental differences more broadly and inclusively rather than singling out the genetics of autism.  I think we do ourselves a disservice if we look at a family like mine and see one autistic individual and see him as a genetic outlier within the family.  The picture looks very different if we broaden our scope and see that while he is the only autistic sibling, that really all four of them mentally and behaviorally form a fairly tight cluster.  The differences between them that lead to their various diagnoses, are actually fairly small compared to the differences that set all of them apart from neurotypical children.

Wendy

 

Epigenetic changes spurred by environmental factors can actually affect the next generation. So, for instance, some condition YOU were exposed to in childhood or in the womb, or your mother, could effect gene expression in your children. It's incredibly complicated and ongoing research is only just starting to make headway into discovering such mechanisms.

I think it is a mistake to equate "environmental factors" with "something under your control/something to blame on the mother." There are plenty of environmental factors in the modern world whose impacts we may not fully understand as yet, which are completely beyond individual control with respect to exposure because of their pervasiveness. The modern human environment is radically different for almost everyone than for most of human history--even the most isolated "uncontacted" people on the planet have encountered diseases they were never before exposed to, have the nutrient balance in their food altered by climate change, and probably have microplastics circulating in their bodies, etc. It's a given that there is going to be a curve in how adaptable we are to the changed environment--social and physical. When it comes to neurodiversity, some ways our brains can be wired, so to speak, are more stressed by the expectations of the modern world than others. It's that stress that the way one's brain works doesn't fit the way it's expected to results in the range of developmental and learning disorders that may go undiagnosed without higher quality screening, rather than neurodiversity itself. 

 

 

[BeachGal]

2 hours ago, Ktgrok said:

Is face blindness something that goes along with ASD? A moderate level of face blindness runs in my family....I have it, my Dad I think, and I know my sister does to an extent, probably not as severe as me. And my son with ASD as well. It causes a LOT of social anxiety, and eventually can lead to giving up even trying to make new friends/aquaintances because you know you won't recognize them next time anyway and who needs that stress. 

 

An area of the brain called the fusiform gyrus appears to be affected in autistic people. It’s involved with facial recognition. I read about the fusiform gyrus and autism in The Emotional Life of Your Brain which was written a few years ago. Researchers might have discovered something new or different in the meantime.

 

Edited April 16, 2019 by BeachGal
added sentence

[Pen]

How is it known that HFA is the same thing as profound autism, just much less severe?

And what happened to what used to be called Asperger’s?

[Lawyer&Mom]

11 minutes ago, Pen said:

How is it known that HFA is the same thing as profound autism, just much less severe?

And what happened to what used to be called Asperger’s?

 

I can tell you what happened to Aspergers.  Between the fourth and fifth DSM, the powers that be (in the United States) decided that there was no meaningful difference between Autism and Aspergers.  Previously, Aspergers was Autism without language delay.  Now language delay is a symptom of Autism that some Autistics have, and some Autistics don’t.  Given that there are always variations in which symptoms present in a Autistic individual, this seems reasonable to me.  (Some Autistics have face blindness.  I have *super* visual memory, including faces. Autism’s a sundae bar, not everyone gets the same toppings...)

I was diagnosed Autistic under DSM 5, I would have been Aspergers under DSM IV.  I personally welcome Autism label.  Being a hyperverbal kid from the get go didn’t make me any less Autistic, and I have plenty in common with Autistic people who did have language delay.

Aspergers still exists as a diagnosis in Europe, and there are people in the US Autistic community who still prefer the Aspergers label.  (Sometimes wanting to impose it on others, so they can keep the “real” Autism diagnosis for themselves.  As in all communities, gatekeeping, and hurt feelings exist.)

[Pen]

On 4/12/2019 at 8:21 PM, wendyroo said:

The M-CHAT (Modified Checklist for Autism in Toddlers)
Typically administered at 18 months and again at 24 months.
Low-Risk is a total score of 0-2
Medium-Risk is a total score of 3-7
High-Risk is a total score of 8-20

1. If you point at something across the room, does your child look at it? 
(FOR EXAMPLE, if you point at a toy or an animal, does your child look at the toy or animal?)
2. Have you ever wondered if your child might be deaf? 
3. Does your child play pretend or make-believe? (FOR EXAMPLE, pretend to drink 
from an empty cup, pretend to talk on a phone, or pretend to feed a doll or stuffed animal?)
4. Does your child like climbing on things? (FOR EXAMPLE, furniture, playground 
equipment, or stairs)
5. Does your child make unusual finger movements near his or her eyes? 
(FOR EXAMPLE, does your child wiggle his or her fingers close to his or her eyes?)
6. Does your child point with one finger to ask for something or to get help?
(FOR EXAMPLE, pointing to a snack or toy that is out of reach)
7. Does your child point with one finger to show you something interesting? 
(FOR EXAMPLE, pointing to an airplane in the sky or a big truck in the road)
8. Is your child interested in other children? (FOR EXAMPLE, does your child watch
other children, smile at them, or go to them?)
9. Does your child show you things by bringing them to you or holding them up for you to
see – not to get help, but just to share? (FOR EXAMPLE, showing you a flower, a stuffed
animal, or a toy truck)
10. Does your child respond when you call his or her name? (FOR EXAMPLE, does he or she
look up, talk or babble, or stop what he or she is doing when you call his or her name?)
11. When you smile at your child, does he or she smile back at you? 
12. Does your child get upset by everyday noises? (FOR EXAMPLE, does your
child scream or cry to noise such as a vacuum cleaner or loud music?)
13. Does your child walk? 
14. Does your child look you in the eye when you are talking to him or her, playing with him
or her, or dressing him or her?
15. Does your child try to copy what you do? (FOR EXAMPLE, wave bye-bye, clap, or 
make a funny noise when you do)
16. If you turn your head to look at something, does your child look around to see what you
are looking at?
17. Does your child try to get you to watch him or her? (FOR EXAMPLE, does your child 
look at you for praise, or say “look” or “watch me”?)
18. Does your child understand when you tell him or her to do something? 
(FOR EXAMPLE, if you don’t point, can your child understand “put the book
on the chair” or “bring me the blanket”?)
19. If something new happens, does your child look at your face to see how you feel about it? 
(FOR EXAMPLE, if he or she hears a strange or funny noise, or sees a new toy, will
he or she look at your face?)
20. Does your child like movement activities? 
(FOR EXAMPLE, being swung or bounced on your knee)

 

I’m confused.  

Smiling back, playing, pointing, understanding...          Point to autism risk?  

 

[Innisfree]

2 minutes ago, Pen said:

 

I’m confused.  

Smiling back, playing, pointing, understanding...          Point to autism risk?  

 

For some items on the list, the concerning answer would be "yes", but for others, it would be"no".

[PeterPan]

On April 12, 2019 at 4:39 PM, tdbates78 said:

 

I have identical twin girls. One has autism. The other does not. So I'm not so sure I believe it's not environmental. Nor do I think it has anything to do with my pregnancy.  

 

There are some studies on twins and autism, so I guess you could look through that. With 80-some genes implicated and de novo mutations possible, I'm not sure it's as simple as saying they're identical so they ought to be the same. And really, I don't think anyone thinks it's *only* one thing or another. Exposures, etc. clearly have an impact. 

To explore the idea of twins and different presentations with the same genes, people might find this link thought provoking. It's not autism, but it's still mind-boggling. Different presentations, same genes. And you could run genetic testing on siblings, find the same genes affected, and then ask why some kids are presenting as ADHD some as ASD, some as ASD 1 vs. 2 etc. if the genes are the SAME. There's definitely stuff we don't know yet.

Anyways, the video at this link is interesting https://www.technologynetworks.com/genomics/videos/identical-twins-who-look-nothing-alike-317525?fbclid=IwAR04ePQ3vQxpKpGvgyTRfxNEzJuWHSMUM8MIvfwCDpkVrkcHwDIRkIml4Ek  It's 11 minutes.

 

[Lawyer&Mom]

I believe that the Bi-Polar, Autism, Depression, Substance Abuse, Schizophrenia and Giftedness in my family are all permutations of the same genes.  We are all the same type (and we all marry the same type) but we have *very* different labels and outcomes.   We have some super high flyers and some who never managed to launch, but we make one hell of a quiz bowl team!

(My mom is one of 28 first cousins, and it’s fascinating to see the variations on a theme you can get with a large enough sample size.  I’m not convinced there is a “normie” in the whole group.)

 

[ktgrok]

4 hours ago, BeachGal said:

 

An area of the brain called the fusiform gyrus appears to be affected in autistic people. It’s involved with facial recognition. I read about the fusiform gyrus and autism in The Emotional Life of Your Brain which was written a few years ago. Researchers might have discovered something new or different in the meantime.

 

Interesting...dyslexia also effects the fusiform gyrus, which my daughter has! No ASD for her, not sure on face blindness yet. Crazy

[Tanaqui]

Quote

Is face blindness something that goes along with ASD? A moderate level of face blindness runs in my family....I have it, my Dad I think, and I know my sister does to an extent, probably not as severe as me. And my son with ASD as well. It causes a LOT of social anxiety, and eventually can lead to giving up even trying to make new friends/aquaintances because you know you won't recognize them next time anyway and who needs that stress. 

 

Oh, absolutely. In fact, I think it may have been largely through the efforts of autistics that faceblindness (prosopagnosia) became recognized at all as anything other than "a very rare condition that you'd need to have some sort of traumatic brain injury to have", and why you know the word at all.

Agnosias in general seem to be widespread among the autistic population, though they're not all as widely recognized. For example, I have topographical agnosia - places that ought to be familiar often don't look familiar, or they look "postcard familiar" not "this is my own neighborhood" familiar. Anecdotally, not uncommon among autistics. In the literature, "very rare condition except among people with dementia". (Though you know how it is. You go ask any forum for autistic people "Hey, does anybody else get this weird thing?" and a bajillion people will respond. That's not data, that's barely even anecdata. That's noise. More research is needed.)

 

[maize]

2 hours ago, Lawyer&Mom said:

I believe that the Bi-Polar, Autism, Depression, Substance Abuse, Schizophrenia and Giftedness in my family are all permutations of the same genes.  We are all the same type (and we all marry the same type) but we have *very* different labels and outcomes.   We have some super high flyers and some who never managed to launch, but we make one hell of a quiz bowl team!

(My mom is one of 28 first cousins, and it’s fascinating to see the variations on a theme you can get with a large enough sample size.  I’m not convinced there is a “normie” in the whole group.)

 

Lots going on in my own and dh's families as well. 

I've often thought we'd make a great genetics research project for someone; we both come from big families (my kids have more than 50 first cousins) so lots of relatives to compare.

[PeterPan]

9 minutes ago, maize said:

I've often thought we'd make a great genetics research project for someone

If someone has ASD diagnosed in the family, they and close relations can participate in the SPARK study. 

[BeachGal]

Back in the 1970s, my MIL developed prosopagnosia from what we believe was a small stroke that was not diagnosed until much later. In her case, she could still see parts of faces but not the whole face. My husband, who may have some small degree of autism, has trouble recognizing actors who look similar. I’ve read that could be prosopagnosia as well, just a mild form. Not sure though.

Richard Davidson’s lab in Wisconsin might have done some studies on it. He did do brain imaging studies on autistic adolescents and saw that the fusiform gyrus was involved. I don’t have the book with me but what he has to say about gaze aversion, anxiety and the fusiform gyrus are interesting. The book is a few years old by now so more recent research might have changed it.

[ktgrok]

I can sort of recognize people, but only after a long time, and in unfamiliar situations I have trouble. So say, meeting someone coming off a plane, I can manage if it is my immediate family, but not much beyond that.