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Jon81
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22 May 2021, 2:22 pm

Both me and my wife had our DNA tested a couple of months ago to see what's up. It was initiated by us because we need at least one NT kid to care for our boys when we are gone. I believe blood is thicker than water. One alternative my wife has now pursued with is using a male donor, cutting me out of the equation. I am not against it because of earlier stated reasons + I also like kids a lot. The only worry I have is how the kid will react to me not being the biological father when they are old enough to understand.

That was the background. This test was not some 23andMe or similar. It was conducted by a scientific team at Uppsala university and tests were sent over to Finland. They did the full package. So the results came back and it showed just about nothing. No clues whatsoever. So both my boys are autistic, their cousin is autistic, several relatives are autistic and still there were no bio-markers. Then we're told that only 7% of the autistic cases can be explained by genetic markers. I don't remember if he was talking about ID or ASD, could have been ID. Seems rather pointless to do this kind of test when they don't even seem to know what they are looking for.

Anyone else had their DNA tested?


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timf
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24 May 2021, 6:59 am

I think you are discovering the difference between what real "science" is capable of and knows and what is shown on TV programs.

I contacted a university that advertised agricultural DNA testing for livestock. They were unable to even get the DNA measured after several attempts.

Considering the amazing complexity of the elements that constitute our neurology, one might expect a significant degree of variability. This would make it highly unlikely that one would be able to predict specific heritable characteristics.

If you are concerned that your children will require care for their future, you may wish to reconsider some of your assumptions. Asperger kids often (usually?) grow up with great functional skills than are apparent when they are children. The ability to have concern for family members is not so much a genetic trait as it is a value system.

When Western civilization was more Christian, there was greater familial concern. If Christianity is repugnant to you, you may wish to investigate other value systems such as stoicism to help teach your children to care for each other.

A child that learns you are not the biological father may not be too concerned about that if you have genuine love and affection for him. However, if he sees his only reason for existence is to provide support for the children you really love, you might be creating a lot of resentment.



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24 May 2021, 8:16 am

Eugenics is making a comeback, I see...


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magz
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24 May 2021, 8:31 am

Don't get a child just to care for their disabled siblings.
I've listened to a now-adult child made and raised just to care for her disabled brother. She considered it severe abuse - she was denied her own "normal" life, her own choices other than being an unpaid nurse. It ended with her leaving her family for another country and cutting all ties.

Find some different way to go about it - because another child would naturally deserve to make their own choices, not always in line with your plans for them.


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Fnord
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24 May 2021, 8:42 am

magz wrote:
Don't get a child just to care for their disabled siblings.  I've listened to a now-adult child made and raised just to care for her disabled brother.  She considered it severe abuse - she was denied her own "normal" life, her own choices other than being an unpaid nurse.  It ended with her leaving her family for another country and cutting all ties. ...
I have heard similar accounts first-hand from the exploited people.  The worst of which involved adopting someone else's child to become the care-giver for one's own disabled child.  Some of the adopted children were "Third World" kids, who were so excited with becoming adopted that they did not realize at first that they were being exploited.


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25 May 2021, 7:10 am

DNA tests can only go so far at identifying genetic problems. The limits can identify well known genes associated with certain types of cancer and that's pretty much it. A lot of these DNA testing companies are often cons and as far as I'm aware do not even test any DNA or even come up with a DNA profile yet alone have any of the equipment needed to do so.

There is also a moral dilemma of having a child with the sole expectation it sacrifices itself to look after a disabled sibling. In all likelihood such a child would turn it's back on everyone and cut its losses.



amykitten
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25 May 2021, 7:56 am

Both my kids had their DNA tested. One was perfectly normal and the other did have a slight chromosome abnormality and she is my more higher functioning autistic child.

I agree having a child just to be raised as a carer isn't right. We're currently researching options for my son for once he leaves education and there are loads of options out there right now. I'm not sure if they are in the same in Sweden as England but we have a thing called community living and it's were SEN adults grow and become independent but have carers on site to help. They build their own relationships with other people within the community and have access to some unique opportunities.

Also autism can change as someone grows up. They said my dad (undiagnosed) would never amount to anything growing up and he was headhunted by google in his career. So couldn't have been all that bad.



mohsart
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25 May 2021, 9:41 am

I as others got a bad taste in my mouth reading that you want a "normal" child so that s/he can take care of his/her siblings.
But I hope and think that we misunderstand you.

/Mats


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Jon81
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31 May 2021, 2:01 am

Ok seems we ended up a bit off topic here. Yes, it has been misunderstood. We would have wanted a third child regardless of that child would like to help out with his/her siblings in the future. To begin with I wasn't very happy about being excluded as I'm fully capable of producing children on my own. That's also the reason we had the DNA checked to see if we had some genetic disorder that would get in the way.

My wife is still insisting on having it done the other way as she's a highly sensitive person and says she has to know what it's like to have a "normal" family as well. I know that sounds really insensitive (I am the first one to acknowledge that) but I believe there's just no way of making her come out of this depression of our current life situation. I'm also missing hearing my children speak, play with others (or at least his brother) without us having to stand around like caregivers. We don't feel like parents anymore. And you people who have children with Aspergers, don't start comparing yourself to us please. This is much too different. They won't end up doing just fine.

A child coming into our family (my wife will be biological mother) is just as welcome as our first two. It will come because we wanted it to be with us. We are not going to breed a child to take care of our autistic kids. That commitment is something that person will have to decide on its own. When I said take care of I didn't mean a full time job. I would hope it could be something closer to making sure they are feeling ok and not being mistreated. Just like you would do with any other sibling. I also have an obligation towards the kids I have put into this world, so I'm not leaving them just like that. And jumping ahead of things, I am still hoping my wife would accept a 4th child, one that I can produce. She said she was willing to take a chance.


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cyberdad
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02 Jun 2021, 11:22 pm

Hey Jono,

I would discuss this with your wife and a genetic counsellor. If you and your wife want another child that's up to you both to decide. There are members on WP who have a mix of autistic kid/s and NT kid/s but I am unsure how reliable genetic testing as its largely in its infancy.

You and your wife's mental health is something that you both should consider if you were faced with a third kid on the spectrum (also keep in mind having an NT/high functioning kid doesn't guarantee he/she will want to look after his/her siblings especially since he/she might have their own family to look after.



idntonkw
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03 Jun 2021, 1:56 am

Jon81 wrote:
Both me and my wife had our DNA tested a couple of months ago to see what's up. It was initiated by us because we need at least one NT kid to care for our boys when we are gone. I believe blood is thicker than water. One alternative my wife has now pursued with is using a male donor, cutting me out of the equation. I am not against it because of earlier stated reasons + I also like kids a lot. The only worry I have is how the kid will react to me not being the biological father when they are old enough to understand.

That was the background. This test was not some 23andMe or similar. It was conducted by a scientific team at Uppsala university and tests were sent over to Finland. They did the full package. So the results came back and it showed just about nothing. No clues whatsoever. So both my boys are autistic, their cousin is autistic, several relatives are autistic and still there were no bio-markers. Then we're told that only 7% of the autistic cases can be explained by genetic markers. I don't remember if he was talking about ID or ASD, could have been ID. Seems rather pointless to do this kind of test when they don't even seem to know what they are looking for.

Anyone else had their DNA tested?


why do you assume an NT kid will be capable of caring for autistic adult siblings? also, you assume that your children will outlive you, but having worked with the elderly population, I've seen quite a few elderly people whose NT children have sadly died before them due to heart attacks, strokes, cancer, etc.

one option is to just set up community services for the children so they are self directed and self sufficient without your input using those services.



mohsart
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04 Jun 2021, 12:38 pm

A thing I thought about earlier but never wrote:
If DNA tests could say much about autism and the likelihood of passing autism/autistic traits down to the offspring, surely DNA tests would be a part of the assessment?

/Mats


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cyberdad
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04 Jun 2021, 9:00 pm

mohsart wrote:
DNA tests would be a part of the assessment?
/Mats


The tests are not accurate, their current purpose is to build up a database for a future diagnostic tool. Some organisations like the University of Toronto do offer genetic cousnelling as part of the package if you give them DNA. The problem is the statistics are pretty poor. For example the general statistic is around 14% probability of having a kind on the spectrum if you had one already, Yet there are plenty of examples where two NT parents with no prior genetic history have 3-4 kids all either on the spectrum or 1-2 with other associated conditions like ADHD, ID or motor-nueron conditions etc.

There is (just to complicate things) also some element of nature Vs nurture here that's not yet properly understood.



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15 Jun 2021, 9:51 am

Fnord wrote:
Eugenics is making a comeback, I see...

eugenics and slavery too. 8O



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18 Jun 2021, 2:19 am

Oh, it just occurred to me, there's something you haven't considered, and it might be important.

Your wife would have been born with all her ova, they develop inside the fetus.
That means that if your wife's mother was exposed to drugs or toxins when she was pregnant, it could have affected the ova, which might potentially be the cause of your kids' autism.
If this is the case, genetic testing of yourself and your wife would not show anything.

I suggest you might see if your wife could have a chat with her mother about whether she might have taken any drugs or been exposed to any toxins when she was pregnant.
I'm not saying this is a likely cause of your kids' autism, but it is a possible, and worth checking out.
Because if it's the case, the plan for a surrogate father could seriously backfire and you could end up with a third autistic kid.



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29 Jun 2021, 2:49 pm

Mrs Peel brings up something I feel needs much more awareness. She is absolutely correct- genetic changes can and do happen sometimes when a female fetus is developing her own eggs while inside her mother. So you may not see the full results of a mutation until that fetus has grown up and had her own children. So it may not be either of you guys. It could have been a cloud of fumes her mom walked into once.

I have a degenerative neurological disorder called spinocerebellar ataxia, which has been in my father's side of the family for at least 200 years. I have one son and there is no way to know yet if he has it too. He is 7 and has ADHD, so the prospect of asking him to care for me (or fend for himself) in a few years seems cruel. He is also really big, so that would make it harder if he ends up having what I have.

The way I see it is that we each deserve to live. And we are stronger as a society due to our diversity. It's a privilege to be here in the struggle.

I agree that your wife should go talk to a therapist before you guys decide either way. She should make sure she is ready to handle whatever she gets handed next.

And seriously, don't count people out. Some of the least functional people as kids turn out to be the most functional as adults.