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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:
Mummatron3000 · 12/07/2017 23:48

Was he talking to you for the purposes of research? In which case I would say he acted unethically - interviews aren't about talking at participants telling them their views are wrong, it should be about gaining deeper understanding from people's lived experiences. And he certainly shouldn't already have concluded what his findings are before he's finished gathering & analysing the data. If he is conducting research, I would actually urge you to contact his university/organisation to discuss your concerns.

milliemolliemou · 12/07/2017 23:51

OP he was a twat and clearly shouldn't be doing any sort of research since it seems he was determined your experience would back his thesis up. Which means he's no scientist (as we would like them to be). Ignore and forget, or write him a note saying you doubt his motives and his science.

Headofthehive55 · 13/07/2017 00:00

It's quite unethical and wrong to examine you as if you were a monkey in a cage.

SerfTerf · 13/07/2017 00:02


Every idiot and his drinking mate suddenly seem to have a postal PGDip from The Polytechnic of Where in "Autism studies".

A lot of it is for CPD, I think, but the other half always seem to be banging on somewhere, talking drivel with all the confidence of a Professor of Psychiatry.

It makes you wonder what the average Autism studies syllabus looks like.

Bettyspants · 13/07/2017 00:04

'A degree in autism '. Really? A whole degree on one diagnosis? What is his background? I would assume medical but from what you've said regarding his comments I think that's highly unlikely!!!

SerfTerf · 13/07/2017 00:08

ds is diagnoised with autism. my dad died before he was diagnosed but reckonned there was nothing wrong with ds... nope, not in his world no, as looking back he was so aspie.

dd is on the waiting list for autism assessment. looking up autism in females, well shall we say it explained a heck of a lot about my life.

@BlackeyedSusan, you're living the spectrum cliche there then? Smile

They should hand out bullet pointed cards when boys are DXed saying "Now observe your father for a while. Now look at your daughter. Finally, look in the mirror". It would save so much time Grin

Aeroflotgirl · 13/07/2017 00:16

Not much of an expert really. His inability to think outside the box, and just trust information he's learned on his course, which may/may not be accurate.

MrsTerryPratchett · 13/07/2017 00:19

When I worked for social services the best piece of advice I was given was, "you might be an expert in services or psychology or assessment or whatever, but the person you are working with and their family are experts in their own lives". People, and their families, were experts. Of course they bloody were and SWs do well to remember that.

Some bloke who's been in academia and not even on the ground? Pfft!

LordBuckley · 13/07/2017 00:37

He doesn't sound like any kind of expert to me. I very much doubt whether he has any kind of respectable degree.

VinIsGroot · 13/07/2017 01:09

I've got a PhD in autism!!! Called 9 years down the line with one HF and one severly autistic child! Both ends of the spectrum!!!!
Both have and ASD DX but couldn't be more different!

Migraleve · 13/07/2017 01:17

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?

Tbh I don't think it's as simple as that. He wasn't saying that your life was one way or another affected by autism, he was just giving opinion on why it's present in the first place. Obviously people who argue their point and don't listen to anyone else are complete dicks, but I don't think either of you are right in this situation. Yes you live with autism so you know ABOUT autism, but you can't say you know WHY, you just can't. There are so many different factors that may or may not play a part in why people are autistic, but simply living with autism doesn't qualify you to say you know what causes it any more than studying it makes him qualified to say he does. At present there is no answer:

Bananasinpyjamas11 · 13/07/2017 01:42

No one knows for sure at the moment, however there is a strong genetic link. What he might have got confused with - is that many people may share the same genetic 'predisposition' however something may happen during pregnancy to bring this out. In short, it's probably genetic in many cases however how this works might be more complex than just 'having the gene'. It's interesting.

However what he's saying isn't right. A combination of what exactly? He's done that immature thing of learning some research but not getting it fully - but then passing it on as if he's an expert.

I know lots of experts - and the best ones are always quite humble, non aggressive or pushy about their subjects. People who are aggressive I find on the whole are less knowledgeable - because they don't stop to hear someone else's view. And yes you probably do know more than he does!

Atenco · 13/07/2017 03:47

I know lots of experts - and the best ones are always quite humble, non aggressive or pushy about their subjects

Well yes. To be a real expert you have to be willing to learn all the time, which means listening

Incitatis · 13/07/2017 04:25

I think some of these people have just been on Autism Awareness courses Grin

Toysaurus · 13/07/2017 07:00

I dealt with a Senco who claimed she had a degree in autism. In reality, she was full of shit and knew nothing. Managed to be well informed on delivering condescension though.

OneInEight · 13/07/2017 07:12

None of us know for definite what caused our child's ASC.

Like you I expect for my ds's genetics have played a strong role as we can see family members with strong traits on both sides of the family. I also believe that the role of genetics has been under estimated by academics perhaps because of poor design of studies or perhaps because they have looked at the most severely affected children rather than those with HFA.

At the same time, and however badly your friend expressed his views, I do believe environmental factors do play a role whether it be nutrition, pollutants, nurture, poor healthcare, the education system etc etc.

cluelessnewmum · 13/07/2017 07:15

Your 'friend' is massively oversimplifing a complex issue.

ASD has a strong genetic component - there are several genes that are associated with the disorder (many of which are to do with the synapses on the neurons in your brain).

However, ASD has also been linked to Prenatal factors (influenza during pregnancy being one) and obstetric complications. Though not everyone that has obstetric complications / influenza during pregnancy has a child with autism so it's likely these factors interact with genetic factors to increase the chance of developing autism.

It is also the case that you can have genes that increase the likelihood of autism but not have ASD. The reality is that there are many risk factors that contribute to developing a disorder like ASD,which are not yet fully understood.

But if he is implying there was something you did during your pregnancy that "caused" your doc's autism, he's wrong and not a very good friend.

SoupDragon · 13/07/2017 07:43

I think you have mansplained to

No, it's just twatsplaining. I imagine it is equally prevalent in brand new "experts" who don't have a penis.

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?

Absolutely. Comparing how what you've been taught with someone's personal reality, yes. Trying to say that there is only one reality and This Is It? Notsomuch.

I must say I did snort at the "degree in autism" though. Is this really a thing or have they just done some dodgy training course by the Dr Foster Online University of Gloucester?

muckypup73 · 13/07/2017 07:48

Not read all the replies, but I too belive its gentic, I belive my father has it, there is something wrong with all the boys in our family.

CloudPerson · 13/07/2017 07:49

I'm starting a master's degree in autism in September. It is a thing, but anyone who considers themselves an expert on something that affects everyone differently is likely to be full of shit!

quartofquakingquills · 13/07/2017 08:00

Regardless of his 'qualification' you weren't consulting him in a professional capacity so it looks like his opinion is not worth having. As you will know, a clinical diagnosis is made after the appropriate tests, interviews and consultation, so really this person was talking tosh and should have been more responsible than to spout what he did.

Phenomenology, or 'the lived experience' would be an important factor to any real expert in the field, and you weren't talking to any sort of expert. Confused

OneInEight · 13/07/2017 08:02

Actually your friend is making a classic mistake of extrapolating what he has been taught about the epidemiology of autism to an individual case. So he may be right that environmental factors are a more important factor than genetics for most children with an ASC (sorry I don't know the most recent figures) but for those families within that population where there is a clear family history of an ASC then it is likely that genetics plays the stronger role.


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CloudPerson · 13/07/2017 08:02

Parents are the experts in their children, but sadly that doesn't give them any credibility when it comes to dealing with teachers/observing professionals/support workers.
Most people will repeatedly say things like "we all know mum is the expert", but IME apart from parroting this, it's a rare person who actually follows through with this.
I know a bit about ASD, two (possibly three) of my children are autistic, and I am too, but I want to gain some sort of qualification because I know as a mum, no matter how much I know, it will never hold any credibility.

ragged · 13/07/2017 08:29

tbf, do you think the guy with "degree in autism" might be "on the spectrum" too? From a public health POV, it's good to figure out what caused autism in real people. But when dealing with real people, you help them adapt & find support rather than insist on finding a correct explanation. I'm just wondering if there's a reason why the guy didn't realise this was an inappropriate setting for him to hammer on about epidemiology and what was right or wrong science.

I, too, am desperate to know form where he got his "degree in autism". Please can your DSIS find out?!

Sugarpiehoneyeye · 13/07/2017 08:34

I would like to award him a Masters in Tosspottery ! 😂

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