Aspie Parent of Autie Children...

[Warmheart]

Crossbreed, I hope another involved, informed parent responds to your original query.

My experience is that kids are not more severely autistic today. We simply have what it takes now to diagnose such severely affected kids and not lump them into "mentally challenged" catch-all diagnosis. In the past, such kids flew under the radar and were thought simply to be severely cognitively impaired.

Looking at the literature, I believe that in the past, there have been many severely impacted autistics, simply not diagnosed and instead became part of
1. the homeless population, or
2. the populations inside institutions.
Today, we identify ASD kids at a young age. In the past, severely effected (and misdiagnosed) were sent into care facilities. Parents didn't have the support to know how to care for kids who bolted out into the street (dangerous!), self-harmed. Care facilities kept these children safe.
Many of these supposedly "mentally challenged" adults are in their 60s and 70s now, and I see them riding the bus with a caretaker from the group homes. Yes, they flap, rock, etc., but doctors didn't always knew what to call this back then when they were kids.

I suspect kids are not more autistic today, we simply identify them as autistic now.

This is based on my personal experience. I am 50.

 

[Crossbreed]

Thanks for your response. Even if treated differently than now, most people can identify quirky vs. severe relatives by the very reasons you gave. An accurate diagnosis isn't even required to make that assessment.

Do I/did I have unusually quirky relatives? Yes (they could be/have been Aspies).
Do I/did I have relatives that required institution-level care? Not until my children's generation.

When someone answers the second question in the affirmative, that is a possible misdiagnosed severe autie. Someone with my daughter's functionality would be notable (even if misdiagnosed).

 

[Ylva]

When someone answers the second question in the affirmative, that is a possible misdiagnosed severe autie. Someone with my daughter's functionality would be notable (even if misdiagnosed).

But they would also have been the family's shame and might have been kept secret.

And if you mean numerically rather than statistically, keep in mind that humanity has only been in the billions for a couple of centuries.

 

[Crossbreed]

I am just talking about family members that I am familiar with, considerably less than "billions."

 

[Crossbreed]

Added poll.

 

[Beverly]

No history of ASD officially in my family though I suspect it has been there at least since the time of the Lewis and Clark expedition. Tow of my ancestors were a part of that, and, what history is available on one of them suggested he was an Aspie. I suspect my father was as well but, with his other disorders, it was hard to separate one from the other.

My daughter does not have sensory issues but, she does have social skills deficits, intense, all consuming interests and, she hand flaps so, though not diagnosed, she is likely Aspie as well, very mildly so but still a cool kid.

 

[Gingerpickles]

You did not have my category. I have funtioning Asperger's many diagnosed clinically throughout family for 3 generations, men mostly. Now getting 4th gen.

I am diagnosed. Mother is likely sever or possible Autistic. My family does not and will not consider them the same. Similar yes. My son diagnosed. He has sever late onset symptoms. If his father's family didn't have 3 same age group cousins with varying degrees of Autism I would have fought to have his diagnosis as a stroke.

He is even more alien to me that NT people except certain twitches about texture and tactile/audio/visual reactions to triggers. He shares many of my allergies. He is another migraine sufferer, which is common in my family as well as Our blood disorder that comes from both sides of mom s family.

My son is non verbal...but not mute. He does poorly on tests because he cannot be instructed of what is required, yet read the instructions to my moms vcr and set it up (he is 10) which shows he can indeed read as he could before onset of severe symptoms. I was was being distracted in OCD habit and didn't want to pause to set it up for her yet. He can play some online games and others cause him meltdowns. I do think he is being shortchanged on his IQ because it requires things that verbalization is needed for.

A younger cousin who has a daughter with autism (only other one) has it in husbands family as well. Also a more severely affected individual. Neither my son nor her daughter see prospects for independent living at this juncture. He is sooo different from the rest of us and I get panicked over it. My older son is borderline as is my daughter. I trained them early to mainstream them though their dad refused to have them diagnoses and "stigmatized". Both are known as eccentric, smart and quirky individuals. My older son is accepted to MIT following family tradition of a male in engineering that my generation broke. I have my theory why this child is affected in negative way as former generations were not. Not a popular theory for mainstreamers but he is only child of mine that had something different in his regime at that age. As well as weakness in the genes from double dose. His dad by sheer chance (we met in army) was related. His Gr-grandmother was my Grandfather's second cousin. Small world : c

All my kids were late in potty training (my daughter hid it well but was not free of bedwetting til age 11, son#1 age 8) ..but he is now 10 and I have not yet been able to have him reliably potty trained he is JUST now at what would be phase 1 in other younger NT kids. Peeing in pot during day if reminded. He was close before his new autism dog and important older therapy dog were poisoned with antifreeze meatballs. he was using it reliably to pee, just had not got to final stage yet.

He can now toast items he wants and certain microwave treats. Serves himself hot tea, beverages, snacks. Make sandwiches of his taste. But having him remain dressed at home is near impossible unless it is new soft fleece, velveteen or silky fabric before signs of wear. He is subject to making sudden loud type noises that makes my aspie self chained inside run in circles and bite myself screaming while I remain falsely calm with a rictus botox smile face on during event. I indulge and reward most of his quiet non-damaging self calming behaviors no matter if other people like them or not. I skip some battles to win the war. He is a little more like me that he actually has more interest in language, and words and art than in math. He still understands Spanish when instructed in it as well. He was reading and speaking at 3rd grade level before onset which also was like me. I was checking dictionary and thesaurus for my writer dad at age 3 which is why I was accepted to Kindergarten early.

PS 10 kids? : ) I always wanted 7+ !

But yes i think this last generation of millennials is hard hit with neurological and chemical dysfunction in much greater numbers than previous and I don't think it is "better testing"

 

[Crossbreed]

You did not have my category. I have funtioning Asperger's many diagnosed clinically throughout family for 3 generations, men mostly. Now getting 4th gen.

I am diagnosed. Mother is likely sever or possible Autistic. My family does not and will not consider them the same. Similar yes. My son diagnosed. He has sever late onset symptoms. If his father's family didn't have 3 same age group cousins with varying degrees of Autism I would have fought to have his diagnosis as a stroke.

That fits with answer #5, with mom as severe history and youngest son as severe child. Unless mom managed self-care, then #4.

 

[Gingerpickles]

Well, I said no fit *picked #4 * because the questions all have either zero or severity+ in prior family history. All prior incidents in family have had high functioning individuals and the less effected diagnosed as NT. No one severe or candidate for any institutions of their era.


My son and his female cousin will be the first ones that may not recover enough ability to self care to be institutionalized if not with family

 

[RockstarRaccoon]

Well, my brother (AspiePie) is on the spectrum, and our father's current wife and our mother both believe that our father is also on the spectrum, so there's that.

 

[Astroganga]

I am not yet diagnosed formally with Asperger's/ASD but hope to be so soon. I have five kids I have had comments about the eldest two, from those who have family members with Asperger's or high functioning autism that they recognise quite a few traits in them. My eldest I don't think so, but my second eldest, it is possible. He seems fairly normal to me but it could be because of my own issues I am not seeing the full picture. He has some sensory issues and has problems making eye contact now but didn't as a baby or toddler, he learnt to speak extremely early-was putting vowels and consonants together at a couple of months, saying quite a few proper words with the correct meaning/usage at 7 months and speaking in complex gramatically correct sentences by 12 months. He is a few years ahead academically, however he couldn't read or write properly until he was seven. He does really aggravate and wind people up, sometimes deliberately, other times not. He also has obsessions, first it was Thomas and Friends where he knew every tiny detail about every engine, including the coupling types, type of whistle sound made, the name of the real train the particular Thomas engine was based on, and the year of release and manufacturer of every bit of Thomas merchandise and toys ever released. Then it was Minecraft, now it is football. My younger three have some traits each, but nowhere near as many.

 

[Crossbreed]

RockstarRaccoon & Astroganga , is there any suspicion of Aspergers (or institution-level ASDs) in your family histories.

 

[Astroganga]

One of my second cousins has Asperger's. He also has a very mild version of FG syndrome which can cause autism (inherited from his mother, who inherited it from her mother who is not my blood relative). My first cousin in that family also has FG and was in a residential school for many years. My great uncle on my mum's side almost certainly had autism most likely Asperger's as did one of her second cousins, both passed away some years ago. My great-uncle always lived alone, was obsessed with trains, collecting books, machinery and manufacturing processes, spoke with a monotone voice and wouldn't make eye contact. He was highly intelligent but his problems were labelled as being caused by brain damage at birth. My mother's second cousin was labelled as 'simple', 'slow' and other things but looking back it is likely he was autistic. He was also extremely trusting and naive, which led to his premature death as my great grandma made him go up on the roof to fix her TV aerial he fell and crushed all the bones in one of his feet and ankle and he died from complications of this. My great grandma also had some Aspie traits. And my mother herself has many Aspie traits.

 

[Rayner]

I have a severe case of autism Along with other disorders. I'm the only Aspie in my family the rest are all NT's.

 

[watersprite]

I am an Aspie dad. Of my ten children, three appear to be Aspies and two are more severely autistic. My 28yo DS has a mental age of 6-10yo. My non-verbal 21yo DD, m.a. = 18mos.

Prior to this generation, we have seen possible Aspies in the family, but absolutely no severe PDDs. Is this true for anyone else here?

I am an aspie mom. No one else in the family of origin is diagnosed as on the spectrum, but I suspect my mom was an aspie. My 2 kids have some traits of autism and docs have suggested they should go through a diagnosis process. They chose not to do so. They're both gifted intellectually and yet have their struggles. My son has always had a fairly severe speech disability.

 

[Sass]

I'm also an autistic mother. Aspergers wasn't a part of the diagnosis criteria anymore when I was diagnosed, so that's how I identify. My son is autistic, under the old diagnostic criteria.

I imagine that there are members of my family I don't know about that were autistic, and there are some I do know of that come from a generation that would not have had access to the resources we have now with which to diagnose, but that I suspect are autistic.

Edited to add: I am unsure of how to measure my son's mental age, and I don't know that I want to. He is a healthy, happy child, given room to be himself. He receives the support he needs for his struggles, and is very bright, and he has the advantage (which sounds awful) of being able to verbally communicate.

There's actually a great blog called Emma's Hope Book you could look into, about a girl whose parents were told she was around 2 in the mental age department. Turns out that wasn't the case, now that she has the resources with which to communicate.

 

[Sass]

Also, I can't answer your poll, because there isn't an option that covers my family. My son and I are autistic, not aspies, and as such there isn't an option that works for us.

 

[Crossbreed]

I am unsure of how to measure my son's mental age, and I don't know that I want to. He is a healthy, happy child, given room to be himself.

It was a necessary evaluation to qualify for adult services and to determine what level was needed.

I can't answer your poll, because there isn't an option that covers my family. My son and I are autistic, not aspies, and as such there isn't an option that works for us.

Aspergers is still on the ICD 10, but (for the purposes of this thread) Aspergers, in DSM5-speak, would be an autistic adult capable of independent self-care. Kanners, an autistic adult incapable of independent self-care. According to Dr. Wing, those are two different animals.

Simple test: If someone gave you a check for $1000 every month plus health insurance, could you keep a roof over your head and food on your table? PKA Aspergers, yes. PKA Kanners, no.

 

[Sass]

It was a necessary evaluation to qualify for adult services and to determine what level was needed.

Aspergers is still on the ICD 10, but (for the purposes of this thread) Aspergers, in DSM5-speak, would be an autistic adult capable of independent self-care. Kanners, an autistic adult incapable of independent self-care. According to Dr. Wing, those are two different animals.

Simple test: If someone gave you a check for $1000 every month plus health insurance, could you keep a roof over your head and food on your table? PKA Aspergers, yes. PKA Kanners, no.

I understand the distinction in terms of services, as the same thing was required in getting my son an aide at school, although mental age was not a measure used.

As far as the simple test goes, I don't even know if I, as an independent adult, could live on $1000 a month, I'd be living in a book fort and eating crackers LOL.

 

[Crossbreed]

As far as the simple test goes, I don't even know if I, as an independent adult, could live on $1000 a month, I'd be living in a book fort and eating crackers LOL.

I'm thinking in terms of the mid-west USA economy. I'm not sure how that would translate in the Australian economy.