This is Pretty Disturbing

[auntie]

I am not sure I actually believe this.

I would be interested to see this broken down by degrees of impairment and cognitive abilities and also corrected for comorbids like seizure disorders. And also to factor in "life style" differences like poor diet, lack on exercise, fewer rewarding personal relationships, and the stress associated with trying to make ones way in the world without being able to easily parse the unspoken rules.


www.psychologytoday.com/us/blog/caring-autism/201810/early-death-in-those-autism-spectrum-disorder

[origami]

Yah I would like to see this unpacked more. How do people with ASD + seizures compare to people with seizures but without ASD. Ditto for depression. I can definitely see an increased risk of accidents caused by wandering. It’s the medical causes I’m more interested in.

[waverly]

I wonder how much of the childhood accidents caused by wandering skewed the overall mortality age.

I thought it interesting that they differentiate the difference between those with a learning disability and those without. I didn't realize that those with ASD have a higher rate of epilepsy. Honestly, it is making me wonder now if my BIL who has epilepsy and an anxiety disorder could also have undiagnosed ASD. He is smart, so no learning disability and seemed pretty average up until puberty.

It could have been that his friends took that social leap and he did not. Or it could have been related to his brain surgery for epilepsy which was around the same time maybe age 15. The brain surgery probably saved his life as he is seizure free, but could have had consequences. Without a total psych eval again, I guess he would never know for sure.

The depression is interesting as well. That parents need to know to set them up for lifelong mental health services or at a minimum periodic mental health check ups maybe.


ETA- my former colleague just sent us a letter about stress and not fitting in as she thought it was the lead up to the start of her seizures.  I would have thought more brain structural, but I suppose environmental triggers (stress) could turn on a gene or whatever else might cause epilepsy? Her tests came back inconclusive, so the doctors don't know why she started having seizures suddenly at 17 years old.  

[auntie]

Oct 12, 2018 10:07:55 GMT -5 waverly said:

I wonder how much of the childhood accidents caused by wandering skewed the overall mortality age.

I thought it interesting that they differentiate the difference between those with a learning disability and those without.


The learning disability think is interesting, but I wonder if there is a cultural word choice thing happening. In the U.S. learning disability specifically means average+ IQ and difficulty learning; in other countries it can be a euphemism for intellectual disability/lower IQ.


I didn't realize that those with ASD have a higher rate of epilepsy. Honestly, it is making me wonder now if my BIL who has epilepsy and an anxiety disorder could also have undiagnosed ASD. He is smart, so no learning disability and seemed pretty average up until puberty.


My kid is very smart. He's also dyslexic. 


Yes, people with ASD do have higher rates of epilepsy. Probably even higher than what is reported because many parents don't recognize more subtle absence seizures. The higher functioning crowd also has higher rates of schizophrenia. 

It could have been that his friends took that social leap and he did not. Or it could have been related to his brain surgery for epilepsy which was around the same time maybe age 15. The brain surgery probably saved his life as he is seizure free, but could have had consequences. Without a total psych eval again, I guess he would never know for sure.


I've known people dxd in adulthood, but your BIL would have to want to do it. 

The depression is interesting as well. That parents need to know to set them up for lifelong mental health services or at a minimum periodic mental health check ups maybe.


Parents can do that, but once they are 18, you can't make them unless you are guardian.


ETA- my former colleague just sent us a letter about stress and not fitting in as she thought it was the lead up to the start of her seizures.  I would have thought more brain structural, but I suppose environmental triggers (stress) could turn on a gene or whatever else might cause epilepsy? Her tests came back inconclusive, so the doctors don't know why she started having seizures suddenly at 17 years old.  

[mightymaude]

Oct 12, 2018 12:51:18 GMT -5 auntie said:

Oct 12, 2018 10:07:55 GMT -5 waverly said:

I wonder how much of the childhood accidents caused by wandering skewed the overall mortality age.

I thought it interesting that they differentiate the difference between those with a learning disability and those without.


The learning disability think is interesting, but I wonder if there is a cultural word choice thing happening. In the U.S. learning disability specifically means average+ IQ and difficulty learning; in other countries it can be a euphemism for intellectual disability/lower IQ.


I didn't realize that those with ASD have a higher rate of epilepsy. Honestly, it is making me wonder now if my BIL who has epilepsy and an anxiety disorder could also have undiagnosed ASD. He is smart, so no learning disability and seemed pretty average up until puberty.


My kid is very smart. He's also dyslexic. 


Yes, people with ASD do have higher rates of epilepsy. Probably even higher than what is reported because many parents don't recognize more subtle absence seizures. The higher functioning crowd also has higher rates of schizophrenia. 

It could have been that his friends took that social leap and he did not. Or it could have been related to his brain surgery for epilepsy which was around the same time maybe age 15. The brain surgery probably saved his life as he is seizure free, but could have had consequences. Without a total psych eval again, I guess he would never know for sure.


I've known people dxd in adulthood, but your BIL would have to want to do it. 

The depression is interesting as well. That parents need to know to set them up for lifelong mental health services or at a minimum periodic mental health check ups maybe.


Parents can do that, but once they are 18, you can't make them unless you are guardian.


ETA- my former colleague just sent us a letter about stress and not fitting in as she thought it was the lead up to the start of her seizures.  I would have thought more brain structural, but I suppose environmental triggers (stress) could turn on a gene or whatever else might cause epilepsy? Her tests came back inconclusive, so the doctors don't know why she started having seizures suddenly at 17 years old.  

How does one recognize absence seizures? Both of mine have had easily identifiable seizures (DD at around 2.5, DS at 6) and been cleared by neurologists, but as they both also have ASD tendencies, I wonder if I am missing something I shouldn't. 

DD was typical, possibly even above average, until her seizure, which was determined to have no cause. It is likely perfect timing, but damn, I want to know if everything stemmed from that or if that was just a sign of what was to come. 

[auntie]

mightymaude, This is a pretty good description of what they look like.

www.mayoclinic.org/diseases-conditions/petit-mal-seizure/symptoms-causes/syc-20359683


I have always wondered if DS had them early on because he sometimes "zoned out" something my parents used to refer to as "gathering wool". Were they seizures or was he just "living in his head" which is something bright kids on spectrum do- spelling class is boring, let's revisit that trip to Strasburg in our heads instead.


My DS reminds me of my mother- her social thinking skills are worlds better than DS, but the ADHD and personality are ridiculously similar especially as she gets older. She has some neurological differences including narcolepsy and has had the occasional seizure when stressed as a younger woman. Fortunately, DS seems to have dodged the narcolepsy.

In first grade I asked DS if he missed having free play as he had in kindie. He looked at me like I was an idiot and said "I can have free play in my head anytime I want". Then he went on to tell me his mind was like a 24 screen movie theater where he could replay any movie, TV show or live event he ever attended.

www.mayoclinic.org/diseases-conditions/petit-mal-seizure/symptoms-causes/syc-20359683

[auntie]

mightymaude,


ETA: I hear you on the frustration around the chicken or the egg situation.