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

[Katy]

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

This has got to be something environmental.  Folic Acid?

[Arcadia]

I think below quoted paragraph from the article is more likely to be true than environmental reasons. Autism in Silicon Valley was seen as a cluster (https://www.scientificamerican.com/article/autism-clusters-californiahighly-educated-parents/) and “their findings indicate a higher likelihood of seeking services by educated parents,” he said.”

“New Jersey is known for excellent clinical and educational services for autism spectrum disorder, so the state's higher rates are likely due to more accurate or complete reporting based on education and health care records, the researchers said. Similar studies were conducted in Arizona, Colorado, Missouri, North Carolina, Utah and Wisconsin.”

 

[prairiewindmomma]

The study attributes the rise to excellent clinical and diagnostic care availability.

Given how very *BAD* access is to early screening through pediatricians in good chunks of the rest of the United States, I think it's a valid working argument.

[prairiewindmomma]

Arcadia and I posted at the same time. 🙂

Anecdotally, I have had a large number of friends have their teens diagnosed recently---and it's all been because of greater awareness by primary care doctors. Most of these friends relocated in from other parts of the US.  Diagnosis = actual access to services here so there's a greater motivation to get an official diagnostic code label.

[Joker]

Yeah, my teen was just diagnosed with ASD this week. We've only been in this state 2 years and the first decent therapist here picked up on it. We lived in a different state the previous 14 years of their life and not one doctor, therapist, or teacher noticed anything. It's almost been a relief getting the diagnosis because it helps explain so many things.

Also, it seems professionals have only recently realized females present very differently than males with ASD.

[Lecka]

58 minutes ago, Katy said:

This has got to be something environmental. 

 

It's sad that I don't think it has to be something environmental, but I think it is unknown.  I have lived in underserved areas and I just do not trust autism rates at all in underserved areas.  

 

[Tanaqui]

1 hour ago, Katy said:

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

This has got to be something environmental.  Folic Acid?

 

No it doesn't.

[Pen]

Possibly of related interest — study trying to adjust for medical care availability / similarity of diagnostic teams. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067639/

[gardenmom5]

I'd wonder what changed in diagnostic criteria, and what training DS have been receiving on what to look for..

 

Wasn't that long ago all but the most severe cases were missed. But their were a lot of undiagnosed kids because no one was looking at them. 

[ktgrok]

57 minutes ago, gardenmom5 said:

I'd wonder what changed in diagnostic criteria, and what training DS have been receiving on what to look for..

 

Wasn't that long ago all but the most severe cases were missed. But their were a lot of undiagnosed kids because no one was looking at them. 

I know the screening questions the pediatricians ask now, during toddler/preschool well visits were NOT asked back when my oldest was a toddler/preschooler, or it may have been caught back then. Instead it was missed until he was 11 yrs old. 

[gardenmom5]

20 minutes ago, Ktgrok said:

I know the screening questions the pediatricians ask now, during toddler/preschool well visits were NOT asked back when my oldest was a toddler/preschooler, or it may have been caught back then. Instead it was missed until he was 11 yrs old. 

not only were questions not asked, when I made the suggestion of wanting to have dudeling professionally screened for asd, I was brushed off by my ped of 20+ years. 

dudeling was formally diagnosed by a team of specialists at the medical school.  at the same time, there were two brand new slp/PT at church and they came running up to me and asked if he was on the spectrum. they were excited to spot a child outside of one presented to them by their professors.

[tdbates78]

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.  

Edited to add *not* before environmental

Edited April 12, 2019 by tdbates78

[Guest]

11 minutes ago, tdbates78 said:

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

I’m confused, then. If it’s not environmental, what does that leave in identical twins where one presents, one does not? 

Environmental encompasses a LOT. 

[bethben]

3 hours ago, Joker said:

Yeah, my teen was just diagnosed with ASD this week. We've only been in this state 2 years and the first decent therapist here picked up on it. We lived in a different state the previous 14 years of their life and not one doctor, therapist, or teacher noticed anything. It's almost been a relief getting the diagnosis because it helps explain so many things.

Also, it seems professionals have only recently realized females present very differently than males with ASD.

My ds was diagnosed at 13 years old.  He went into therapy for depression (which turned out to be a computer addiction --he'd stay up all night) and it was suggested he get evaluated.  Turns out he is considered to be on the spectrum.  It also explains quite a bit.  I just thought he was an introvert to the extreme.  He could have gone his whole life without a diagnosis if not for the counselor.  

[Pawz4me]

DS20 wasn't formally diagnosed until he was 17. From the time he was about 18 months old I was as sure as a reasonably well informed/well educated mom could be that he was on the spectrum. But his pediatrician, OT and ST said no, he can't be because he makes eye contact. In their minds, and given the current thinking at that time, if a child on the spectrum could fake sociability for the length of an office visit or therapy session then he couldn't be on the spectrum. Fast forward about 15 years and the thinking on what autism (particularly in gifted/2e kids) looks like had changed a lot. Also, by that time he was having significant anxiety. It took two visits with a psychiatrist for the anxiety issues for her to definitely (in her medical opinion) come to the conclusion that he was on the spectrum. Psycho-educational testing then confirmed it.

Although I don't think DS's rather late diagnosis harmed him any, I'm glad professionals are getting better at diagnosing earlier.

And no, I don't think anything environmental caused his autism (and just FWIW, some on the spectrum find that notion offensive).

[wendyroo]

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

 

[Pen]

20 minutes ago, 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

 

 

1 hour ago, tdbates78 said:

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

 

I’m confused.  Both of these posts seem to suggest a strong likelihood of environmental factors being at least partly responsible.  

4 siblings not identical twins all with some sort of alphabet soup of diagnoses and similar glitches, no family history 

and

2 identical twins one with autism one not

 

???

[tdbates78]

1 hour ago, Quill said:

I’m confused, then. If it’s not environmental, what does that leave in identical twins where one presents, one does not? 

Environmental encompasses a LOT. 

Yikes. I meant to say I'm not convinced that it's not environmental. Typing too fast to so we could head out to dinner....sorry about that! 

[Tanaqui]

1 hour ago, 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. 

 

And if it turned out one twin was left-handed and the other right-handed, would you conclude that, ipso facto, handedness must be environmental? Your children are, I'm sure, growing up in the same environment, aren't they?

 

[Tanaqui]

Genes are complicated. Epigenetics is complicated. The human mind is inordinately complicated. The distinction between the diagnosis rate and the incidence rate... okay, that's not so complicated, but figuring out how relevant it is is difficult.

Point being, I don't think you can look at a single set of twins and say "Based on my experience, I think thusly". That's just sloppy.

(And as a left-handed autistic woman, I tend to relate all such anecdata to the study of handedness. People who have no idea what causes one person to be right or left handed are perfectly happy to opine on the cause of such diverse conditions as autism, sexuality, gender dysphoria, dyslexia, and so on. Interesting fact, left-handedness correlates with at least two of the things I just listed. No, I don't know why and you don't either.)

[prairiewindmomma]

Neuro-immune response to viral infection

interactions with gut bacteria (since the gut makes a lot of neurotransmitters)

15th chromosome defect 

There is a LONG list of things that “potentially” cause autism. I really don’t think that autism has a single cause. I think it’s a label we give to a cluster of symptoms.

On a tangential note, there is some argument that rheumatoid arthritis and other autoimmune issues, cardiac disease and cancer all have the root problem of chronic inflammation in the body. It’s turned a lot of research upside down—just like the links between Parkinson’s and diabetes. 

[gardenmom5]

there are both environmental and genetic factors.  because there isn't just "one" cause, it is one of the reasons it is harder to treat.  and why kids can manifest so differently.

[Innisfree]

22 minutes ago, prairiewindmomma said:

There is a LONG list of things that “potentially” cause autism. I really don’t think that autism has a single cause. I think it’s a label we give to a cluster of symptoms.

This.

 

[maize]

1 hour ago, 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

 

My kids are similarly complex, though I can see some elements in my own and dh's family. MiL and FiL were both very capable and mentally healthy, but most of their kids have mental health struggles; something about the combination of their genes seems to be at play. High functioning autism and ADHD both exist in my FOO though of course neither were diagnosed in past generations--people were just quirky.

I'm diving into what is known of genetics to see what I can tease out, I have 23andMe results for 3 generations and a partial 4th (both of my grandmothers) and am waiting on full genome results for two family members. I know someone who does research on ASD genetics and am going to have them look at that data. 

Of course we are barely beginning to understand the genetics of such things and have hardly begun to scrape the surface of epigenetic factors.

[tdbates78]

3 hours ago, 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.  

Edited to add *not* before environmental

I edited my original response. I left out an important word by mistake as I was typing quickly so we could leave for dinner. Lesson learned! 

I had intended to say that I don't believe that its NOT environmental. Otherwise not sure how it would explain how one identical twin could have ASD and the other not. 

[Rosie_0801]

6 minutes ago, tdbates78 said:

Otherwise not sure how it would explain how one identical twin could have ASD and the other not. 

 

I'd be more inclined to think one was just better as masking than the other.
But anyway, life is a weird experience whatever kind of brain we have.

[Lecka]

This is not specific to your situation tdbates, but I also have twins and one has autism.

Mine are fraternal, and obviously genetics is huge.

However my “baby B” had worse positioning the whole time I was pregnant, and he was thinner when he was born than my daughter, and he was more stressed, and things like that.  He was in the special care nursery one day, and my daughter was with me and nursing within an hour of birth.  My son started with supplementing with a bottle before I even held him.  

So I do not think my twins had the same experience even though they are twins, I think being a twin may have had an influence on my son, but not my daughter.  

I think if it were pregnancy related this way, it would be considered environmental?  I don’t know if there is a different category but I have seen risk factors associated with pregnancy/birth and autism, and my son had several.  

Edited April 13, 2019 by Lecka

[Tanaqui]

12 minutes ago, tdbates78 said:

I edited my original response. I left out an important word by mistake as I was typing quickly so we could leave for dinner. Lesson learned! 

I had intended to say that I don't believe that its NOT environmental. Otherwise not sure how it would explain how one identical twin could have ASD and the other not. 

 

Even identical twins aren't really identical. Genetics is really complicated.

And, as I said, so is the brain. Small changes can have big effects, a fact which probably does more to explain why various conditions cluster together than anything else. One twin could have a very small change in her brain which led to a big change in her mind.

Edited April 12, 2019 by Tanaqui

[Lang Syne Boardie]

12 minutes ago, Rosie_0801 said:

 

I'd be more inclined to think one was just better as masking than the other.
But anyway, life is a weird experience whatever kind of brain we have.

 

I would agree. I think those unfindable ancestors might have stood out as obviously as our kids, if they'd lived in the information age. 

I grew up in a combination of mid-century modern farm and small town life, and mid-century modern public schools. It would take me no longer than a spring break, to teach my kids how to mask and survive. That was a predictable life, with ample recovery time and far less sensory overload. The public school routine, the rhythms of the town, and the expected behavior (from school or church or family) could be *learned.*

Not that it was perfect. And we can't and shouldn't go back. But I cannot imagine navigating the information age in an experimental era of education, as a child. I wouldn't have stayed in school. I know this, because even back in the day, I schemed and planned to graduate early because I couldn't take one more semester. I am 100% sure that I couldn't and wouldn't accept and survive the senseless and relentless bombardment that today's children suffer. Not only is there too much information, but too much of it makes no sense. (Standardized testing culture. School shooting culture. Illogical teaching of math and English, followed by hours of homework at home.) What in the WORLD keeps the high IQ children with autism in school? MY school was mindnumbingly boring and paced so slow, but it was not illogical, and I could finish all my homework in study hall or on the bus.

Sorry, digressed a little. My point is that our relatives from prior generations and lifestyles probably had a better handle on the code, because the code at least made sense. My relatives were "quirky," as it was. Functional but their lifestyles wouldn't work now. Nobody would let them have that much privacy and peace to be different. 

Edited April 13, 2019 by Lang Syne Boardie

[Pen]

https://www.spectrumnews.org/news/twin-study-unearths-clues-to-role-of-environment-in-autism/

1 hour ago, square_25 said:

 

No family history could just as easily be gene interaction between parents. The assortative mating hypothesis, maybe?

 

I think there’s pretty clearly a genetic aspect, but as with the link above, identical twins with one autistic, one not tend to show that environment also factors in.  Since environmental factors can cause mutations, or can sometimes cause gene sequences to be expressed or to lie dormant and other complex interactions , there isn’t necessarily a matter of 2 distinct and mutually exclusive possibilities.  Genetics and Environment can both be factors.  

Assortative mating would be a factor if you and your dh both have very mild levels of something along the relevant alphabet soup lines that draw you together and then find stronger expression in your children, wouldn’t that be?  Like maybe if you are both non emotional mathematics oriented types, but not over the edge into anything that would get a label.  And then kids pick up like a double dose of that   ???   Or, how would you understand that?  

[Pen]

https://www.ohsu.edu/xd/education/schools/school-of-medicine/departments/basic-science-departments/molecular-and-medical-genetics/labs/oroak-lab/torch/Autism-Identical-Twins.cfm

 

Twin autism study that may be searching for participants.  Possibly don’t have to be local to it. ???

 

[Lecka]

Does anyone know, are pregnancy/birth factors considered environmental?  

Edit:  and would epigenetics be considered environmental or genetic?  I do not understand that either.  

 

Edited April 13, 2019 by Lecka

[Lecka]

Okay, that does make sense to me, too.  It’s not what I usually think of as environmental.  

[maize]

11 minutes ago, Lecka said:

Does anyone know, are pregnancy/birth factors considered environmental?  

Edit:  and would epigenetics be considered environmental or genetic?  I do not understand that either.  

 

I think epigenetics are kind of a hybrid--they can be influenced by environment (and in some cases the epigenetic changes that are caused by that environmental influence can be passed down to future generations) and they act by altering the expression of genes. Genes themselves may determine how susceptible we are to certain epigenetic alterations given particular environmental factors. Crazy complex stuff and it is going to take us a very long time to sort out.

In the case of epigenetic differences in identical twins--it is possible that some are caused by small environmental differences, and also possible that some may be pure chance.

[Pen]

17 minutes ago, Lecka said:

Does anyone know, are pregnancy/birth factors considered environmental?  

 

I think yes.

17 minutes ago, Lecka said:

 

Edit:  and would epigenetics be considered environmental or genetic?  I do not understand that either.  

 

 

Not sure. I think it has achieved its own designation .   But tends to more often be grouped with genetic.  Similar to mutations getting classed with genetic, even if cause for mutation was an environmental one.  

[Pen]

7 hours ago, Margaret in CO said:

Does NJ have a higher rate of lead poisoning?

 

Our country has massive lead problems.  In many places.  And it could be some autism rise has to do with deterioration of old lead containing systems—paint, water supplies...

low zinc has also been implicated

[Rosie_0801]

28 minutes ago, Lecka said:

Does anyone know, are pregnancy/birth factors considered environmental?  

 

C-section and fast vaginal births can result in retained primitive reflexes, which cause some autism, add, adhd, learning difficulty symptoms.

[Pen]

https://tamararubin.com/2015/05/autism/

lead  poisoning and autism similarities...

I found the comments of readers section interesting as well as the main section 

 

 

Edited April 13, 2019 by Pen

[Joker]

3 minutes ago, Rosie_0801 said:

 

C-section and fast vaginal births can result in retained primitive reflexes, which cause some autism, add, adhd, learning difficulty symptoms.

Interesting! I'm going to see what I can find on this. My dd who was just diagnosed was a fast labor - only 90 minutes from first contraction to holding her. No one ever mentioned worrying about anything other than her lungs at the time and nothing since. 

[Laurie]

8 hours ago, Katy said:

 

This has got to be something environmental.  Folic Acid?

Aluminum adjuvants in vaccines?  https://www.ageofautism.com/2019/04/scurrilous-misleading-attack-on-prof-christopher-exley-by-the-sunday-times.html

I wonder if NJ also has a higher rate of "well-child" visits to pediatricians?

[Pen]

7 minutes ago, Laurie said:

Aluminum adjuvants in vaccines?  https://www.ageofautism.com/2019/04/scurrilous-misleading-attack-on-prof-christopher-exley-by-the-sunday-times.html

I wonder if NJ also has a higher rate of "well-child" visits to pediatricians?

 

A number of toxic metals (lead, mercury, aluminum...)  may be implicated in “autism” even if there is some other “true autism” that isn’t related to toxic metal poisoning.  

There may again be a problem of naming where “autism “ isn’t all the same, nor from a single cause.

[maize]

10 minutes ago, Laurie said:

Aluminum adjuvants in vaccines?  https://www.ageofautism.com/2019/04/scurrilous-misleading-attack-on-prof-christopher-exley-by-the-sunday-times.html

I wonder if NJ also has a higher rate of "well-child" visits to pediatricians?

According to the American Academy of Pediatrics childhood vaccination rates in NJ are slightly below the national average (select any state from the menu and you can see rates compared to national average)

https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/immunizations/Pages/Across-America.aspx

 

[wendyroo]

2 hours ago, Pen said:

4 siblings not identical twins all with some sort of alphabet soup of diagnoses and similar glitches, no family history 

???

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

[TrixieB]

6 hours ago, Ktgrok said:

I know the screening questions the pediatricians ask now, during toddler/preschool well visits were NOT asked back when my oldest was a toddler/preschooler, or it may have been caught back then. Instead it was missed until he was 11 yrs old. 

What are the new screening questions?  Just curious - my kids are now teen/young adult. 

[wendyroo]

20 minutes ago, TrixieB said:

What are the new screening questions?  Just curious - my kids are now teen/young adult. 

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)

[Pen]

1 hour 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

 

Yes.  I see what you mean now.  

Though too, some environmental factors can be very localized.  Friends of mine, for example, had herbicide exposure , due to a neighboring property and prevailing winds, that was greater than typical for community, and both their dc had retardation.    They didn’t discover the herbicide link for many years, and could otherwise have just thought that somehow 2 honors students genetics brought together led to a wrong mix that resulted in retardation.  

Were you and your dh younger or older than average in your community, did you eat the same foods, use the same products? Might you have had an electric transformer nearer your bed than average, and so on and so forth...  there can be many differences 

 

the second part , looking more broadly, I think is a very important point.

[Tanaqui]

Speaking of the M-CHAT and diagnoses (as compared to incidence) - if anybody had given that to me as a toddler, I would have "failed" it. (I would have failed at the age of 8, to be honest - I didn't point at things, I didn't look people in the eye. Those were starred entries on the older version of this checklist). By that point my parents were trying to get me diagnosed, but nothing doing. Nobody then was interested in handing out autism diagnoses to girls who could talk, and with quite a sophisticated use of syntax and a broad vocabulary to boot! (But with no sense of correct register in speech, and a persistent case of what some of my autistic friends call "autistic accent syndrome" - something shared with my mother and the younger kiddo. That's not a formal diagnosis you can actually get, but it's pretty common.)

On paper, it looks like we have no family history of autism. We really do. I mean, we *really* do.

But you know what's really funny? Despite the fact that my mother definitely knew I was autistic when I was a kid, and she certainly knows her father was (boy howdy, was he ever), she doesn't really see that all of her family has traits of autism and/or ADHD. And she doesn't understand that her carefully chosen circle of friends - a small circle - has always been composed entirely of other people who share those same traits. It's like assortative mating, but with friendships instead of romance. (Well, except for my father - with him, it was both, of course!) But my mother thinks that her perception is normal, and that all those other people she doesn't willingly associate with are not normal - they're boring, they're stupid, they're bizarrely uninterested in anything worth talking about - but normal? Not if that means she isn't it.

It has taken at this point nearly two decades to slowly bring her around to the idea that I didn't inherit autism directly untouched from her father, skipping her entirely. Likewise, she's consistently been startled when I point out that this thing or that thing isn't really typical. No, most children do not play simply by lining up their toys and sorting them, even if you and I and your brother did that. No, most children, even if they're left-handed, do learn to tie their shoes and button their jackets and use utensils and comb their hair and write at least a little legibly by the time they're ten. No, it's really not normal to forget about paying the electric/gas/phone/cable bill just because you forgot to bring in the mail... and it's definitely not normal to keep doing this, year after year, no matter how many times they shut off the service. (That last one is her, not me, thank you very much. Let's just say that executive function is not a strong spot for any of us.)

So when people say that autism has increased, I think of all the other people in my generation who were not diagnosed as children, or who received some other diagnosis - ADHD, "mental retardation", childhood schizophrenia (yes, really), "honestly, smart children are just like that", OCD....

And when people say they have no family history, sometimes I wonder if I'd say the same thing if I knew their family. People do tend to think that their families are the norm.

[Carrie12345]

My thoughts and feelings on all of this are a jumbled up mess of about 16 years of experience, research, changes in science, different perspectives, and (imo,) pointless recatergorizations. For all of the advances we’ve made, I believe we’ve also made a bigger mess.

I see a lot of diagnosed ASD. Perhaps some day we’ll see the common thread. Right now, the best analogy I can come up with (and it stinks) is cancer. It’s this big umbrella term for a generalized type of cell, but there are a ton of different types and stages that are caused by different things (or seemingly nothing), require different approaches, and every individual responds differently even within the same type. Sometimes research in one area does help out research in other areas, but we mostly don’t go around preventing or treating all cancers the same way.

I fail to see how lumping all ASD under one umbrella will help, but I’m no scientist. I’m just a mom who was given 1,001 Things That Might Help and had to play scientist to figure out which ones seemed most beneficial to a specific kid with a diagnosis that could mean just about anything!

ETA: Keeping it relevant, my kid is New Jersean!

 

Edited April 13, 2019 by Carrie12345

[maize]

7 hours ago, Pen said:

 

Yes.  I see what you mean now.  

Though too, some environmental factors can be very localized.  Friends of mine, for example, had herbicide exposure , due to a neighboring property and prevailing winds, that was greater than typical for community, and both their dc had retardation.    They didn’t discover the herbicide link for many years, and could otherwise have just thought that somehow 2 honors students genetics brought together led to a wrong mix that resulted in retardation.  

This is speculative attribution, they have no way of knowing that herbicide exposure was the cause of their children's difficulties.

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.

[Pen]

2 hours ago, maize said:

This is speculative attribution, they have no way of knowing that herbicide exposure was the cause of their children's difficulties.

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.

 

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.

Edited April 13, 2019 by Pen