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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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corythatwas · 13/07/2017 13:34

PurplePeppers, the language "get" is rather problematic in the case of autism as it suggests a disease that can be triggered, a body that malfunctions.

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corythatwas · 13/07/2017 13:42

"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?"

Which is why it requires intelligent listening and reporting. Not refusal to listen at all.

And that is the same with many diagnoses. I did not expect doctors to ask me for the cause for dd's struggles. But it would have been helpful for their diagnosis if the following had gone down in her medical notes from the start: "Mother reports pain in wrist joints since childhood and difficulty in performing basic fine motor tasks; also maternal grandmother's inability from a young age to perform basic tasks such as kneeling or lifting even very light burdens". It was not my job to evaluate that information. But it was, arguably, their job to write it down.

In the case of autism, reports of relatives being sent to special school might be relevant (or not) quite regardless of what the person reporting it thinks, so they should be listened to and reported.

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Spikeyball · 13/07/2017 13:46

Ds has a cousin from each side of the family with autism. Ds is the most 'severe' possibly because he got a double dose of genes. Whatever the cause I believe it was definitely present at birth.
In terms of tailoring the environment, it wouldn't get rid of all his difficulties especially since there are learning difficulties in the mix too but it would make his life less stressful. Along with the right support and acceptance from the general public.

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Sleepthief84 · 13/07/2017 14:18

This thread put me in mind of one of the best pieces of advice I've been given as a new mother. I have no experience of autism (hats off to you Mums!). When DD was tiny she saw a physio at home as she had a weak arm from a shoulder dystocia birth. When the physio was leaving I asked her opinion on a few things and when we were speaking I finished by saying to her '.....but I'm no expert'. She sat me down and said to me 'it's true you are not an expert in physiotherapy. However, you are THE expert in your own baby. You know her best. Trust your instincts.' I've never forgotten it. Sorry, waffly post but my point is she was right. We are the experts in our own children. That man sounds like an arse OP. I'm sorry he upset you.

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Bananasinpyjamas11 · 13/07/2017 17:43

I guess it's trying not to swing too far one way or another. A parent knows their child's personality and habits, and a neurological condition like ASD has to be seen in the context of that personality. But no parent will magically know the cause of ASD, just because we have a child with ASD, as we have biases that can cloud our judgement.

I think the same is true of people saying that everyone should just either cure all ASD traits or let the environment adapt and accept and the ASD person will then be OK. I don't find view very helpful.

A parent of a non verbal child with extreme aggressive behaviour may well want her child to be 'fixed' as in help to be able to speak. I wouldn't say that parent is not 'accepting' her child's ASD by wanting to change that.

A parent with a HF ASD child who is able to speak, able to learn and has a degree of independence may well NOT want her child to be fixed, but to stop any bullying or predjudice against them.

No one actually knows the causes, although there is a really strong genetic association. All the other factors like environment might be linked, but the evidence isn't there yet.

And no one really can say that all people with ASD are really OK but just have different eye colour or left handedness either. We can't speak for others.

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Ashvis · 13/07/2017 18:08

I think any talk of "fixing" in terms of autism spectrum condition isn't useful. Helping to support autistic people, whether that help is to assist independent living, or aid communication or anything else is helpful. My ds is what could be described as high functioning, but that doesn't mean his autism is mild, or doesn't have difficulties he needs help with. Equally, I know lots of families with non verbal children, but that doesn't mean they can't communicate, but they do need help to find their own ways to communicate. I don't know a single autistic adult who wished they didn't have autism. Lots acknowledge that life hasn't necessarily been easy, but if they have had good support, it's a part of who they are in which they can take pride. And having autism doesn't automatically mean getting bullied. With proper support at school, helping classmates to understand the condition, staff checking regularly, these children shouldn't get bullied. I taught lots of autistic children, none of whom were bullied, and while I have some worries about school, bullying isn't one of them. Helping my ds have a good understanding of his condition means he is actually pretty pleased he has autism.

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