To wonder why the f* people still think vaccines cause autism?

[coolitcathy]

Name changed for privacy reasons.

Stumbled across a Facebook group about "parents against vaccines" a few minutes ago which suggested, nay STATED, that vaccines cause autism and are essentially poison. I think the hysteria is potentially getting worse due to this Covid vaccination that's getting rolled out at the mo. Is anyone still infuriated or is the anger dying down now as we all get distracted by something else happening? Also why is autism seen as such a bad thing?

(If you're anti vax I'm open to you sharing your viewpoints but I haven't seen any information that makes me consider that outlook)

@Kaliorphic

It seems as if they were two completely different 'conditions'?

Yes.

It’s not two separate conditions, that in itself would over simplify things. I remember when DS was younger someone saying “when you have met one person with autism you have met one person with autism”

Trying to narrow it down simply feeds further into stereotypes which don’t help anyone. The key is to remember that everyone is an individual no matter what their diagnosis may be.

When a woman embarks on a pregnancy, she knows that she is taking a risk and may end up with a child who has an illness or disability. Babies aren't dollies, they're not churned out in a factory and examined for defects then rejected to be recycled into another dolly if any are found.

No woman is obligated to continue a pregnancy for any reason and is free to decide to end that pregnancy if she so wishes. That is entirely her decision and is not the business of anyone else. If screening indicates the child has an illness or a disability then she still has the right to end the pregnancy if she so wishes and it still isn't anyone else's business.

Raising a disabled child is hard, certainly harder than raising a typical child, and impacts on all areas of your life. Parents of disabled children aren't saint-like martyrs, we're human and we had dreams and aspirations for ourselves never mind our children, we're allowed to say that its hard and we're allowed to say that we wish things could be different. Being a carer is one of the hardest life paths, it damages physical and mental health, there is next to no support, and burnout is high. You don't get to tell parent-carers that their experiences are not valid or that their experiences amount to hatred of their autistic child. I love my children very much and could not imagine being without them but this is not how I expected my life to be and not what I wanted for them.

Of course we should be positive about differences and we should celebrate our children but there is an increasingly unpleasant contingent who seek to jump on anyone who goes against the "autism is au-some!" rhetoric.

I don't think just because you're a carer for someone, you can speak for them. I gave this example earlier but its a bit like me being a white mum of non white (mixed race) children. I can advocate for them but I will never actually know what its like to experience racism. My husband and children can give lived experiences and I can recount their experiences and empathise but it isn't the same as experiencing it myself. I think this is really similar - if you aren't the person who is non NT, you can't reallyknow.

Yes, I take your point, but I'd submit it's just as hard for someone with Asperger's to understand the life of someone who's non-verbal and with ID. Working together, and not excluding carers from the discussion simply because they're NT, would seem the best way to help. Both groups have valuable experience.

@FoxyTheFox

Completely agree.

Brilliant post foxy

Nobody should be made to feel bad for saying that they are struggling or finding things tough. All the “god only gives special children to special people” crap does nothing but add to this idea that because you have a child who is disabled your supposed to be some kind of saint who can do it all.

@ForestNymph - do you have personal experience of ABA.

My son did ABA for many years, early on for 30 hours a week. I have hundreds of videos of his sessions. Lots of laughing, playing games, cuddles with tutors who adored him. He absolutely loved his sessions. They taught him everything he knows now and how to communicate. People have a very strange view of ABA. If one to one learning, a lot through play is awful then I’m the worst parent ever!

@FoxyTheFox - absolutely spot on. Very well said. Xx

Its selfish in all honesty - you want to eradicate autism from the gene pool because your life was made hard by it
Firstly there’s still not conclusive evidence that autism is genetic. Secondly, if it does have a genetic basis we have no idea how it works. It’s possible that it works like Downs Syndrome, which is impossible to eradicate because it’s a random mutation in the genes. Thirdly, if you’ve suffered with a particular condition it’s reasonable and natural to not want others to experience the same suffering.

You are talking about a human being here. You have painted them as a Frankenstein
My point is that people say kids with Downs are cute but they react totally differently when presented with an adult who’s severely affected. Downs can have dermatological manifestations such as yellow scaly dermatitis, patchy lichenification, thick yellow palms, syringomas (tumours) on the sweat glands, lesions and boils which don’t respond to antibiotic treatment, alopecia, in addition to the more well known cognitive and physical symptoms of Downs. The lady I know has severe skin symptoms and alopecia - people do stare and comment and nudge each other, she also suffers a lot of pain. Her sister stopped taking her swimming because people would make rude comments and get out of the water when she was lifted in. People in shops wouldn’t take money from her hand (pre Covid). It must be very upsetting if that’s your child. People who say “it’s not that bad, an affected person can have a good quality of life” usually fail to appreciate it’s a spectrum, they have no experience of having a severe condition or caring for someone who does, and they rarely understand the comorbidities.

e.g. what you would have previously called Aspergers seems miles away from an autistic person with severe limitations - non-verbal, incontinent, etc. It seems as if they were two completely different 'conditions'?

I think this would be more harmful to consider these isolated conditions, as then you run back into the issue of formerly Aspergers ( and / or "high functioning") people not being validated as they're not seen as "bad enough" to count.

Of course I don’t understand what it’s like to be my children, even more so because they can’t tell me. But if I don’t speak for my children, who is going to represent them in this discussion? I don’t think that having autism means you can understand what another autistic person thinks or feels and apparently I am not allowed to represent them, so this is why we end up with autism activism that does not include them. And often I don’t think that’s accidental - I’ve spoken to many Autistic people in discussions who would clearly rather children like mine didn’t exist or weren’t spoken about, and are very quick to claim they must have other intellectual impairments rather than acknowledge autism can manifest this way. They don’t fit the narrative some wish to portray.

@coolitcathy

e.g. what you would have previously called Aspergers seems miles away from an autistic person with severe limitations - non-verbal, incontinent, etc. It seems as if they were two completely different 'conditions'?

I think this would be more harmful to consider these isolated conditions, as then you run back into the issue of formerly Aspergers ( and / or "high functioning") people not being validated as they're not seen as "bad enough" to count.

But this is a bit chicken and egg.

you want to be seen as 'bad enough to count'

BUT

Don't want parents (who may be NT) to complain about the bad aspects of parenting autistic children.

Don't you see the inconsistency of this?

@SinkGirl

Of course I don’t understand what it’s like to be my children, even more so because they can’t tell me. But if I don’t speak for my children, who is going to represent them in this discussion? I don’t think that having autism means you can understand what another autistic person thinks or feels and apparently I am not allowed to represent them, so this is why we end up with autism activism that does not include them. And often I don’t think that’s accidental - I’ve spoken to many Autistic people in discussions who would clearly rather children like mine didn’t exist or weren’t spoken about, and are very quick to claim they must have other intellectual impairments rather than acknowledge autism can manifest this way. They don’t fit the narrative some wish to portray.

There are non verbal autistics who use typing software. Obviously not everyone can but thats probably the "closest" to their experience?

You may find this article interesting, written by Phillip, who is non verbal.

researchautism.org/i-have-nonverbal-autism-heres-what-i-want-you-to-know/

Also, this individual directly addresses the "Aspie people can't talk for non verbals" criticism here

www.google.com/amp/s/lysikan.tumblr.com/post/106147681470/you-dont-speak-for-low-functioning-autistics/amp

@coolitcathy

e.g. what you would have previously called Aspergers seems miles away from an autistic person with severe limitations - non-verbal, incontinent, etc. It seems as if they were two completely different 'conditions'?

I think this would be more harmful to consider these isolated conditions, as then you run back into the issue of formerly Aspergers ( and / or "high functioning") people not being validated as they're not seen as "bad enough" to count.

But equally by broadening the spectrum, the more severe cases are being ‘diluted’.

Here is that link again to the Jama Psychiatry article

The thing about nor broadening it though is then people suffer. I went through school not knowing I was autistic or had "aspergers". But I definitely knew I was "weird". Knowing why helps put that into a context.

We always know we are different, we just don't always know why.

I’ve spoken to many Autistic people in discussions who would clearly rather children like mine didn’t exist or weren’t spoken about, and are very quick to claim they must have other intellectual impairments rather than acknowledge autism can manifest this way. They don’t fit the narrative some wish to portray.

One of my (adult) siblings is autistic and fell in with a group who were very keen to portray autism as being the next stage in hman evolution and that it was not a disability, it was a genetic adaptation to the modern world. They encouraged only forming friendships and relationships with other autistic people. They did not recognise any autistic people outside of their own very limited spectrum and, similar to your post, claimed that people like this had other impairments and are not "true autistics". It was almost cult-like and I was glad when my sibling moved on to a new obsession.

Tbh, I think we need more acceptance of neurodiversity rather than thinking that people are ‘weird’. The fact that there is becoming less and less difference between what classes people as autistic and non-autistic illustrates just how intolerant we are of any little thing that’s perceived to be ‘different’.

I understand where you’re coming from but I wonder if it does make sense to classify people with autism as part of such a large spectrum when there is such a massive difference between people at both ends. Perhaps there are multiple versions of autism - not caused by one specific gene, but by several genes or combinations of genes which dictate the severity of autism which a person can develop. It could be that the most severe cases of autism are the result of a specific set of mutations while less severe forms are the result of others. If we are trying to identify specific subsets of genes then having them all bundled together under one label of autism could actually prevent us from finding any significant differences between the groups.

@FoxyTheFox

I’ve spoken to many Autistic people in discussions who would clearly rather children like mine didn’t exist or weren’t spoken about, and are very quick to claim they must have other intellectual impairments rather than acknowledge autism can manifest this way. They don’t fit the narrative some wish to portray.

One of my (adult) siblings is autistic and fell in with a group who were very keen to portray autism as being the next stage in hman evolution and that it was not a disability, it was a genetic adaptation to the modern world. They encouraged only forming friendships and relationships with other autistic people. They did not recognise any autistic people outside of their own very limited spectrum and, similar to your post, claimed that people like this had other impairments and are not "true autistics". It was almost cult-like and I was glad when my sibling moved on to a new obsession.

The reason some of us prefer to befriend other autistics is because its easier and we often have more in common.

It tends to work out thet way anyway - my husband is very clearly autistic but neither of us knew either of us were until our son. However almost all of my close friends have a diagnosis or suspected ASD, its not like I ask them that before we become friends; it's more that similar people tend to find each other.

@ForestNymph But you’ve used two examples there of people who are non-verbal who can communicate via other means and be involved in this discussion. I have been clear throughout that I am referring to those who cannot do this by any means.

Tbh, I think we need more acceptance of neurodiversity rather than thinking that people are ‘weird’
But it ends up being more tolerance than acceptance. Neurodiverse people are accommodated and treated with respect in public, but people still act on their personal feelings in private. Or as the headmaster used to say when I was at school: “We can make them let her join in but we can’t make them be her friends”.

Well that’s why I said more acceptance. Clearly tolerance isn’t good enough.

[quote SinkGirl]@ForestNymph But you’ve used two examples there of people who are non-verbal who can communicate via other means and be involved in this discussion. I have been clear throughout that I am referring to those who cannot do this by any means.[/quote]
The closest we can get are non verbal people who can communicate through other means. Surely those people are closer to non verbal people who can't communicate than either you or me?

@DonkeyMcFluff

Tbh, I think we need more acceptance of neurodiversity rather than thinking that people are ‘weird’ But it ends up being more tolerance than acceptance. Neurodiverse people are accommodated and treated with respect in public, but people still act on their personal feelings in private. Or as the headmaster used to say when I was at school: “We can make them let her join in but we can’t make them be her friends”.

We often don't want to be their friends though. We just don't want to be harassed and discriminated against. There's a huge difference.

@ForestNymph

I'm interested in your views on the following if you wish to share (due to some of the experiences you've described on this thread).

Do you think knowing from a very young age that you are autistic is always helpful?

Say someone who could be on the very lower end of the spectrum (maybe Asperger with subtle but recognisable traits - if you know where to look, so to speak)

I'm close to people like this (ages ranging from 50 to 80 years)

The ones who are in their 80s have grown with parents who were not very clued up (to be expected at the time) and viewed their differences as 'quirks' and helped them through their difficulties (because they did struggle often).

I wonder if knowing that they were different when they were little/teenagers would have perhaps made them self concious and prevented them from getting on in life (e.g. studying for a degree, getting married, having children, etc). Being oblivious to this matter in a way could have been beneficial?

I sometimes ponder this and can't make my head around it.

Needless to say, I don't mean people who have severe limitations or whose MH is suffering badly etc.

We often don't want to be their friends though. We just don't want to be harassed and discriminated against
Not “being friends” results in a lot of silent discrimination though. Kids who get left out and not invited to parties. Kids who are bullied for being a “loner”. Employers who don’t hire you because you won’t fit in with the team and they can’t see themselves having lunch with you. Or employers who reject you because you’re not bubbly and smiley enough to present the right image to customers. You get access to what’s available to everyone but as soon as there’s a choice to be made you won’t get picked.

It’s not enough to go through life simply being tolerated and not harassed or discriminated against. Most people want to be liked and have friends. It’s utterly miserable when nobody likes you and you’re always alone and have nobody.