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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:
LizTaylorsFabulousTurban · 13/07/2017 08:40

I agree with Mummatron3000 - if this is for some research this chap is doing then his actions are unethical. You should have been given a consent form what he spoke to you (if you weren't then this is problematic in itself). I would contact the ethics committee at his institution.

redexpat · 13/07/2017 08:46

@MrsTerryPratchett recently qualified SW here. THat's exactly what we had drummed into us in our first year.

DS has autism. His play therapist asked a psychologist if trouble sleeping was conected to autism and this psychologist said no it wasnt! Well that's not what the clinical psycologists at the pediatric pschiatric department said. Nor is it what is said in quite a lot of the literature.

zzzzz · 13/07/2017 09:05

This reply has been deleted

Message withdrawn at poster's request.

Ashvis · 13/07/2017 09:09

No, op, you're not unreasonable, you know more about your child than that idiot. I did a lot of reading about autism for my job before having my autistic ds but have learned so, so much more since then! FWIW, having autism does not mean there's something "wrong" as pp have said. It's not wrong at all. It's something different - a different way to be built. When ds was diagnosed both his psychologist and doctor made a huge point of saying autism is a condition as opposed to a disorder, not something wrong at all. We have always told ds this, and he is bloody proud to be autistic.

KC225 · 13/07/2017 09:10

I agree with 'Iamnotaslimceagirl' a degree doesn't make you an expert in anything and I have one.

BishopBrennansArse · 13/07/2017 09:12

I have three children, all have autism.
Each pregnancy I lived at a different address in different types of area - urban, country, suburb. My pregnancies were during different seasons. I did things differently wrt exercise (can't really do pre natal yoga when you have a baby under a year with you too!).

The only factor they all have in common is an autistic mother.

BishopBrennansArse · 13/07/2017 09:16

I also still stand by my opinion (with precisely no medical background whatsoever) that autism is as a result of evolutionary changes happening in the human brain. I say this because of the supposed increase in autism (although that may be because people like me weren't diagnosed until adulthood and the chronic under diagnosis of girls both then and now).

PurplePeppers · 13/07/2017 09:46

I have one ds who is on the spectrum. I would say that both DH and his father are too. Ive been wondering about his Dsis too.

But in ds case, I would say that actually it's his MMR that started everything.
I also think that diet has had a huge impact on him and how well he is doing.

So as far as I am concerned, genetics have a role to play but not just genetics (otherwise why would I have one child on the spectrum and not the other, both boys?).

I suspect that the 'expert' could easily find someone whose experience is different from yours and that will reflect what he is explaining.
It's not really what his 'theory' is wrong. From what I read, he is actually probably right.
I would have been annoyed at the way he talked, talked over you etc... and agree that it's was more of an issue with mansplaining and thinking they know best rather an issue with his pov.

(As an aside, have you seen time recent research about the link between autism and the gut biome? Fascinating)

PurplePeppers · 13/07/2017 09:47

zzz because seeing the amount of anxiety and stress that autism gives my ds, I'd like to know what is the cause to try and alleviate that. Even if it's only a little bit.

BishopBrennansArse · 13/07/2017 09:48

Purple that could still be genetics.
TBH my kids had a double whammy - it's pretty obvious there's an element from their dad's side too,

zzzzz · 13/07/2017 09:51

This reply has been deleted

Message withdrawn at poster's request.

makeourfuture · 13/07/2017 09:54

How much credence should we give to anti-vaxers?

makeourfuture · 13/07/2017 09:57

I would say that actually it's his MMR that started everything.

Isn't this dangerous territory?

CloudPerson · 13/07/2017 10:14

Talking about MMRs can be dangerous territory, but I do believe that many people have experiences that are dismissed and ignored.
My son wasn't anxious or violent at all (although still autistic) until he was put on a drug known to have awful side effects, but this was ignored by all dr's we saw, and we were treated like woo conspiracy theorists. There may not have been a link to the drug, but we will never know because no-one would listen. (The drug was montelukast which has had a lot of press for causing neurological side effects, but it has taken years of parent groups to prove it and to provide information to other parents).

I was diagnosed as an adult and can see now that the family has plenty of neurodiversity, even if most would be horrified at the thought that they were possibly on the spectrum Hmm.

I suspect that genetics plays the main part, but that there are external factors that can trigger things, or make the already present autism worse.

I also think that society is far more unaccepting of difference, and the local environment (meaning schools, supermarkets, etc) are far more overwhelming than they were thirty years ago, so we may be seeing a rise because there are so many more intolerable situations for our children to deal with, and far more pressure to fit into society's rigid expectations.

grandOlejukeofYork · 13/07/2017 10:16

I don't think either of you actually know, but your guess is a lot more sensible than theirs.

Ashvis · 13/07/2017 10:17

MMR does not cause autism. It doesn't. They have done huge meta studies where they have taken data from all the studies done around the world and there is no evidence at all that MMR caused autism in anyone. It just so happens that around the time children are given the MMR, children who have autism are most likely to start displaying more traits. I got arthritis about the same time I got married but I could no more say that marriage caused my arthritis than MMR caused my son's autism. Just because both things happen around the same time, doesn't mean one thing causes another.

I understand that finding underlying causes could help some therapies for some people, but you don't need to understand why someone has anxiety to help find ways of dealing with it. FWIW, I reckon ds' autism is largely genetic, but honestly, that's not important to me. What is important is finding ways to support him. That doesn't depend on finding out why he has autism. There is evidence that some people with autism have an enlarged amygdala, and that causes stress and anxiety. But again, not all autistic people who have anxiety have an enlarged amygdala.

BishopBrennansArse · 13/07/2017 10:23

My kids were autistic pre mmr.
I never had the mmr.

BarbarianMum · 13/07/2017 10:24

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?

araiwa · 13/07/2017 10:30

Noone really knows the cause (s)

I hope doctors and scientists carry on trying to find out what its cause is.

eggsandwich · 13/07/2017 10:38

I have 10 people in my family with various degrees of autism make of that what you will, I for one believe with this many family members diagnosed the most likely answer for us is genetic.

elliejjtiny · 13/07/2017 10:40

I have an 11 year old with AS, a 9 year old with SPD and a 3 year old who has a diagnosis of speech delay and is at the beginning of a very long process of being assessed for ASD.

Definitely genetic in our case, loads of people with ASD in both sides of the family. 3 year old seems to be more affected than 11 year old and I've often wondered if it was because he had a traumatic, premature birth. He used to scream and scream for me when he was in the neonatal unit and wouldn't settle for the nurses. Totally different to his brother who has LD but no autism, who was also premature but didn't seem to notice whether I was there or not.

Ashvis · 13/07/2017 10:41

Rather than finding the cause, I'd rather they funded things like training in autism awareness and acceptance for people who work with the public, fund play areas for kids with additional needs, making things like disability buggies more affordable, ear defenders, money for charities that support vulnerable children and adults, parent peer support groups...


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BishopBrennansArse · 13/07/2017 10:42

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.

BishopBrennansArse · 13/07/2017 10:42

Ash is gmta

SerfTerf · 13/07/2017 10:48

autism (although that may be because people like me weren't diagnosed until adulthood and the chronic under diagnosis of girls both then and now).

I honestly believe that that is what is creating the "gap" that is prompting theories of multiple factors @BishopBrennansArse

Once girls and women start being diagnosed more widely and we move a generation or two along so that more "HF" aspies across the generations are then dxed, I think it will become apparent to the scientific community that it's WHOLLY genetic, albeit multiple genes are involved.

We're in the transition stage now where those on the spectrum who are male and born after 1990, have probably been diagnosed but those on the spectrum who are female or born before 1990 are probably lurking inidentified. That is almost inevitably going to lead to some interesting (wildly incorrect) epidemiological theories.

I wish I could find someone to give me odds and take my £100 stake on that Grin

In the meantime, any (actual) professional of any stripe who doesn't know the history of autism being "blamed" on mothers and can't see how close "environmental factors" theories come to doing that again, needs to get googling "refrigerator mothers".

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