If you have a sibling with ASD

[Aroundthelight]

If you have a sibling with ASD, have any of your own children been diagnosed with ASD?

Was reading the results of this study www.nih.gov/news-events/news-releases/autism-risk-estimated-3-5-children-whose-parents-have-sibling-autism and interested to know other people's experiences.

I have a sibling with ASD and have two small children, neither have any ASD symptoms.

Dmum, probably autistic undiagnosed, dbro diagnosed as adult, myself diagnosed as adult, my ds diagnosed as child, dniece (my dsis daughter) diagnosed. Also have a cousin (on mums side) diagnosed. Definitely genetics afaic.

I have asd, my son also has asd.

Do you mean you think that the rate quoted in the study is likely inaccurately low due to the limits you mentioned in first post?

I think its likely accurate, just reassuringly low :)

Question was for @RickiTarr, my quoting didn't work!

No, but I have autism diagnosed and my sisters children DO have autism.

Ah sorry!

Interesting hearing all the different hereditary links, especially the specific ones where the parents have a sibling with ASD

My son has ASD. DD doesn't want any children for risk of having a child with it. Nor does DS. I don't blame them.

@baldafrique yes I wonder whether it is fairly accurate - it's double to triple the rate in general population but still pretty low. And I think that if those in the study had a sibling with diagnosed ASD they would presumably be open to their own children being assessed

It's massively underdiagnised in girls/women.

@GiantToadstool

It's massively underdiagnised in girls/women.

Yes, it really is.

It's an interesting concept that NT siblings could be carriers of ASD genes despite not having it themselves

My brother and dad are undiagnosed but its obvious to others. I used to think I couldn't be ( I "do" empathy and like people....) but when my daughter was diagnosed and I am just like my daughter....

@GiantToadstool

My brother and dad are undiagnosed but its obvious to others. I used to think I couldn't be ( I "do" empathy and like people....) but when my daughter was diagnosed and I am just like my daughter....

Really hard in girls. I do have empathy, but then I wonder if that is a learnt concept?I dont know. I feel things too strongly sometimes. I also was in my 30s when I realised I masked 95% of the time.

@baldafrique yes exactly, that's what I thought was interesting about the study. And on a personal level the question that I've been asking myself since before having
my children!

@Aroundthelight

Do you mean you think that the rate quoted in the study is likely inaccurately low due to the limits you mentioned in first post?

Yes. IMO.

That's the other question isnt it...maybe a lot of us actually have ASD ourselves

I think the "autistic people dont have empathy" is a fallacy myself. Some don't maybe. But siemtimes it just doesn't look how NT expect it to look or the autistic person hasnt picked up on what the problem is. My daughter scored super high on an empathy quiz and still got diagnosed - I am not diagnosed (yet) but I think I am good at empathy. I can understand others pov and am.fascinated by people (but then maybe psychology was a special interest and others may think Im not so great at empathy!? Who knows.)

@baldafrique that's kind of where I was leading. It may be more "obvious " in brothers/fathers/children....

I am the first person in mine and my exes family to have an autistic child, no other family members are on both sides 🤔

I am convinced my brother would now be diagnosed as asd and adhd. He's in his 50s now but was labelled the naughty kid and sent away to boarding school, had massive social anxiety and preferred to live alone in a tent in the garden!
I now have 2 children with asd and adhd.

@baldafrique

It's an interesting concept that NT siblings could be carriers of ASD genes despite not having it themselves

I’m no scientist, but aren’t most hereditary conditions capable of being carried without being expressed in the carrier?

I would be very surprised if it turns out to be a gene or genes that lie dormant for generations, though. My observation is that most children diagnose on that spectrum either have a patent or grandparent that presents as possibly/probably autistic, and often several relatives meeting that description.

I will also eat my hat if the much quoted “environmental factors” are ever identified. That’s just a continuation of the awful way parents have been blamed since autism was first discovered. I’m quite sure autism is purely genetic, based on my own experience and observation. (I wish I could find a bookies to accept that bet. I would happily stake a grand!)

The problem is that for several decades only “Kanner” autism was diagnosed and - horribly - there came to be a stigma attached to that and now that HF autistic conditions are better recognised, and all autism is better understood, that stigma still lingers.

@baldafrique

That's the other question isnt it...maybe a lot of us actually have ASD ourselves

Well I have, but yes I’ve often looked around at the DC’s autism groups and thought the parents were under diagnosed.

What’s really funny is that when I’ve sometimes told some other parents of children with ASC about my own diagnosis, they try to persuade me otherwise. Lakes of denial.

@GiantToadstool

I think the "autistic people dont have empathy" is a fallacy myself. Some don't maybe. But siemtimes it just doesn't look how NT expect it to look or the autistic person hasnt picked up on what the problem is. My daughter scored super high on an empathy quiz and still got diagnosed - I am not diagnosed (yet) but I think I am good at empathy. I can understand others pov and am.fascinated by people (but then maybe psychology was a special interest and others may think Im not so great at empathy!? Who knows.)

Yes I’ve taken this up with four autism specialists to date, because it’s the thing that really doesn’t fit in my family, and they all told me that current thinking is that the empathy is felt but not necessarily conventionally expressed. I high I’m sure lots of us could have told them.

I wonder when they’ll stop studying this aspect and rewrite the official criteria/descriptors?