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AIBU?

To think I know better than an 'expert' what caused my dc's autism?

131 replies

ShamefulDodger · 11/07/2017 22:18

Had a rather heated exchange earlier with a friend of my dsis.

This friend has apparently 'done a degree' in Autism, and was asking me some questions. I'd previously agreed to talk to him (I usually would avoid a social situation where I am the focus on pain of death)

I stated that in my family's case I believed it was a genetic cause.

Straight away he it seemed to me jumped down my throat and started to argue that actually he thought it was more likely to be certain factors during my pregnancy and that there are always multiple factors, never just genetic Confused

My dd has been diagnosed with ASD, as have I and my father, though we were diagnosed much later on in life. From stories we've heard about my granny (Df's mum) I would hazard a guess that she would have been too.

He kept trying to talk over me or to me like I was stupid so I got upset and left Blush

It's not even really that he disagreed with me, it was the way he did it.

AIBU in thinking that even if you have a degree in something you shouldn't start arguing about it with someone who is actually living it?

OP posts:
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BishopBrennansArse · 13/07/2017 10:49

I know 10 other women my age or born within 5 years either side of me (1978) who have been diagnosed in the past three years.

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SerfTerf · 13/07/2017 10:51

Personally as an autistic person I feel there is far too much obsession with finding something to 'blame' and far too little time spent making autism acceptance the norm and making lives and outcomes better for autistic people.

Yes! It's like society-wide hand-wringing about lefthandedness or shortsightedness or somesuch. It seems to hark back to those earlier ideas about difference.

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witsender · 13/07/2017 10:51

FloggingMolly puts it perfectly for me, spot on.
If he's discovered the causes of autism he should be being feted in the Lancet, not patronising random people who couldn't give a toss what he thinks.
What a dick.

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witsender · 13/07/2017 10:51

Bold fail there.

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SerfTerf · 13/07/2017 10:52

I know 10 other women my age or born within 5 years either side of me (1978) who have been diagnosed in the past three years.

That doesn't surprise me. The medical community are actively rethinking female presentation now and women are more likely to seek professional opinion than men.

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BarbarianMum · 13/07/2017 10:56

I am quite sure that there is a large genetic element in autism but just saying it is down to "genetics" isn't really a full explanation.

Which genes cause autism? Do all autistic people carry all these genes, or just some of them or are there different groups of genes in different autistic people. Then, does everyone carrying these "autistic" mutations/combinations have/ go on to develop autism, or are there individuals who carry the genes but in whom they are not expressed. And if not, why not?

I developed coeliac disease in my 40s. One of my genes carries the genetic mutation common to all coeliacs. But not all people carrying this mutation develop the disease. No one knows why or what can allow you to eat gluten fine for 40 years but make it dangerous in the 41st.

The genetics of disease is a fascinating field but one that's in its infancy.

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BishopBrennansArse · 13/07/2017 11:00

Barbarian I have RA. I have a gene that can cause it in 1:5 cases. No idea why the other 4:5 don't go on to develop it!

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SerfTerf · 13/07/2017 11:02

Are you referring to autism as a "disease" @BarbarianMum ? Hmm

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BishopBrennansArse · 13/07/2017 11:04

I missed that actually, Serf

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Dawndonnaagain · 13/07/2017 11:08

The genetics of disease is a fascinating field but one that's in its infancy.
Autism is not a disease.

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Ashvis · 13/07/2017 11:12

Autism is not a disease 🤦‍♀️ That implies it needs a cure which it does not. Different operating system that needs accepted and embraced.

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Headofthehive55 · 13/07/2017 11:16

I think it's more like left handed ness. And I think that's a good analogy. Genetic, almost certainly. They just are as they are. I have two children on the spectrum of having asd. I am just like them and so is DH! In my house they are perfectly normal.

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CloudPerson · 13/07/2017 11:25

Autism isn't a disease, but I'm not sure left handedness is a good analogy.
My diagnosing psychologist likened asd to being blue eyed, just a little part of me. It's not. Being blue eyed has never led to any difficulties at all. Perhaps if I was in a very carefully tailored environment that was perfect for me I'd be fine, as it is im not and I'm not fine.

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CloudPerson · 13/07/2017 11:26

*it's not and I'm not fine that should read.

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Dawndonnaagain · 13/07/2017 11:29

I feel that left handedness is a touch dismissive.

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Notreallyarsed · 13/07/2017 11:29

Personally as an autistic person I feel there is far too much obsession with finding something to 'blame' and far too little time spent making autism acceptance the norm and making lives and outcomes better for autistic people.

Quite literally word for word what I came on to say. I have autism, I have 3 kids with it (DD diagnosis still pending but all involved in agreement), my dad is autistic, as are my uncles. I'm sick fed up of people telling me why or what I did wrong or worse telling me that there's nothing "wrong" with me or DD because it's not as obvious with us. No, dickhead there is nothing "wrong" with any of us, we're autistic not fucking circus freaks!

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TatianaLarina · 13/07/2017 11:30

How many mansplainers does it take to change a lightbulb?

Well actually.. I think you'll find it's just one. He holds it while the world revolves around him.

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DeadDoorpost · 13/07/2017 11:34

I'm sorry, OP, I laughed the whole time reading what your 'friend' said.
As someone who is from a very ASD/autistic-heavy family, it's obvious that there's a huge genetic link.

I think I know what your 'friend' may have meant though, in regards to getting a 'degree in autism'. When my youngest brother got diagnosed, we went to a woman who was specially qualified to diagnose others with autism etc (only one in Cornwall (at the time) as well, so we were lucky to bump into her when we did- pure accident). My cousins have also been diagnosed by specialists, who have been training and learning for many years to try and understand ASD/autism. Maybe he took a nut-job degree in it though? Like a dodgy one or something. Wouldn't be surprised- you can anything on the internet nowadays.

Either way, ignore him. You know your kids better than anyone else anyway.

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Ashvis · 13/07/2017 12:08

Ha, Bishop, gmta indeed!

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corythatwas · 13/07/2017 12:10

Add message | Report | Message poster
BarbarianMum Thu 13-Jul-17 10:24:44
"If you, or anyone "know" for sure why your child has autism you need to get publishing- that's info the world has been waiting for.

Do the parents of children with cancer, or diabetes or bipolar disorder also know best why their children have these conditions?"

Surely it would be very stupid to for a medic to ignore the woman presenting with a growth in her breast who tells you that "my mum, and my sister, and my gran all died from breast cancer"?

Which is an exact analogy to this situation. What the OP does know better than any expert is her own family history. And this is relevant information if there is any possibility at all of a genetic factor. (And assuming a case where the cause actually needs to be determined- which as others have pointed out, may not be the case with autism).

If experts had listened a little earlier re my family history of joint trouble, they wouldn't have taken 10 years to arrive at a diagnosis of Ehlers Danlos for my children. And wasted a considerable amount of time lecturing me on parenting.

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corythatwas · 13/07/2017 12:13

and no, I don't think autism is a disease

but I do think this is really about something else: how parents, and in particular female parents, are downgraded as information providers because of some underlying assumption that they are probably part of some "cause"

and that holds equally true for diseases, disabilities and autism

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makeourfuture · 13/07/2017 12:23

What the OP does know better than any expert is her own family history.

But isn't it true that this relies, in many cases, on a retrospective diagnosis? Of people who may not even be around anymore? By someone who is not exactly unbiased?

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SerfTerf · 13/07/2017 12:25

Which is an exact analogy to this situation. What the OP does know better than any expert is her own family history. And this is relevant information if there is any possibility at all of a genetic factor. (And assuming a case where the cause actually needs to be determined- which as others have pointed out, may not be the case with autism).

Couldn't agree more @corythatwas

I hope AS (though currently defunct as a dx) is eventually seen as a natural variation. That would be the value to me; An acceptance that society needs to accommodate difference rather than "fix" it.

Of course it's not that straightforward because not all ASCs are HF and there are people who will see identifying the genes as a step along the road to cure or eradication.

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PurplePeppers · 13/07/2017 13:30

I personally don't believe the wholly genetic because I wouldn't believe it for any other issues.
We know that genes can be switched on and off and that the environment is what causes the switch (and emotions too btw).
That's why some women who have the gene for breast cancer get to develop cancer and others don't.

Some genes make us more likely to get xxx. It doesn't mean that that person WILL get xxx.

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grandOlejukeofYork · 13/07/2017 13:32

Surely it would be very stupid to for a medic to ignore the woman presenting with a growth in her breast who tells you that "my mum, and my sister, and my gran all died from breast cancer"?

Well, they wouldn't ignore it, would they? But neither would they agree if the patient said "I know for a fact that my cancer is genetic because of my family history" because the medic would know that while that is certainly likely, it is by no means definite.

So the woman would not know for sure the cause of her cancer, same as no mother knows for sure the cause of a childs autism.

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