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245 replies
username108 · 07/09/2019 12:31
There is a channel on youtube called FatheringAutism, which is based in the USA. The Dad has a severely autistic teenage daughter and he films her daily life- including distressing meltdowns. As an autistic person, it is really upsetting to see him exploit his daughter. He is making a fortune and has just bought a huge house with a pool etc. He apparently quit his job a few years ago to do this youtube thing full time as he obviously saw that it would earn him a fortune.
What concerns me is that a lot of his supporters are vulnerable people who send him money via paetreon and all these other platforms. A lot of autistic people have commented about how they don't like what he is doing and he basically tells them their opinions aren't relevant (despite claiming to raise autism awareness!).
So, I need your help. They have just been nominated for an award called the WEGO health awards. I have just tweeted the CEO of the WEGO health awards and expressed my thoughts, and I'm wondering if anyone else will do the same? I really don't want this guy (Fatheringautism) to be given a platform for autism advocacy when he continually exploits people who are vulnerable, including his poor daughter. You can tweet or email the CEO - his name is Jack Barrette.
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PenguinPop · 07/09/2019 12:36
I don't agree with you. This family says constantly that they are saving the money they earn for their daughter's future. Just because you have autism, doesn't mean you are the same as her or require the same care. I think it's fair for them to try to provide the best future for their daughter and many other families use YouTube, so why can't they? Sounds discriminatory tbh.
username108 · 07/09/2019 12:37
Also social services paid them a visit the other day, as they said they lock their daughter in her room overnight for her safety.
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username108 · 07/09/2019 12:38
Penguinpop She cannot consent to having her daily life filmed and put on the internet for the world to see. It is wrong.
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PenguinPop · 07/09/2019 12:40
Also social services paid them a visit the other day, as they said they lock their daughter in her room overnight for her safety.
Yes but as I said before, just because she has Autism doesn't mean that she is the same as you. For all you know, she might try to hurt herself with the various appliances around the home or elope in the middle of the night. Are her parents not allowed sleep?
user1471449295 · 07/09/2019 12:40
I agree with you username108.
HugsAreMyDrugs · 07/09/2019 12:42
It's a bit off to say that people who have autism differing opinions are irrelevant when you are trying to raise awareness of autism. So YANBU there.
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PenguinPop · 07/09/2019 12:42
She cannot consent to having her daily life filmed and put on the internet for the world to see. It is wrong.
How does it harm her? Serious question. From what I see, it allows the family financial access to far more therapies than the average person. The daughter doesn't even notice the filming and hiding her away doesn't mean she doesn't exist.
steppemum · 07/09/2019 12:43
I agree with you OP.
If he is documenting himself, that is one thing, but to documne this daughter who cannot consent is another.
exploitation.
NameChange84 · 07/09/2019 12:46
I specialise in working with SEN children and adults. This man’s videos, at least the couple I’ve viewed, do make me feel deeply uncomfortable. There is no way the daughter can consent and, in being so brutally honest about her needs, she has no privacy or confidentiality. I do feel that it’s exploitative and wonder where the line is drawn with YouTube.
I’m sure he thinks he is helping the parents of autistic children but he is not a professional and he does sometimes get things very wrong. As I say, I watched a couple of his videos then vowed not to as I think it’s unethical.
I had no idea about the financial aspect.
busybarbara · 07/09/2019 12:46
I'm in two minds about it. It is obviously difficult to watch as it faces a lot of difficult realities about caring for a child with a long-term condition.
But, strictly speaking, as parents you get to make decisions like this. People put babies into TV commercials, children into TV shows (both scripted and medical/documentaries), and so forth without their "consent" which they can't accurately give till they're adult.
If they are making money for her living expenses and future through this AND tastefully demonstrating what live with autism is like, I think the good outweighs the bad. One of the main reasons people with autism get judged is because there are really no good representations of them and it all seems so "alien". If they are tastefully giving the world a view into their world, maybe it will open some minds and foster some empathy both for them as carers and for autistic people generally.
lilypips · 07/09/2019 12:49
Hmm autistic people are not the same isn't really the issue. The issue is the child is totally being exploited. These are not the same. Saying some autistic people are ok with this isn't acceptable. She is a vulnerable child FFS. Remove the label; see the person.
adaline · 07/09/2019 12:51
She cannot consent to having her daily life filmed and put on the internet for the world to see. It is wrong.
Neither can any of the other children who have their lives and photos plastered all over Facebook.
Parents are trusted to make good decisions for their children until they're old enough or capable enough to make those decisions themselves.
PenguinPop · 07/09/2019 12:54
I honestly don't understand this. If you took away their income from YouTube, how would they be able to afford all her therapy in the US? It's because of that therapy that she is able to communicate at all (through sign language). Is that really fair to her? Lots of people use YouTube for income, so I think it's discrimination to say this family is not allowed to, especially considering they have basically sacrificed their whole lives to care for their daughter.
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adaline · 07/09/2019 12:54
The issue is the child is totally being exploited.
If she's exploited, do you think all the other YouTube/Instagram families out there are exploiting their children too?
What about parents who sign their children up for modelling careers or TV adverts?
Personally I think this makes people uncomfortable as it means they have to think about what life is actually like for parents of severely disabled children.
username108 · 07/09/2019 12:57
Penguinpop There have been times where she has shoved her hand on the camera and he dismisses this and continues to film. Her therapies are funded by the state/insurance. They regularly go on holiday (so far about 5 times this year). Don't be fooled by the "we are saving for her future" BS. They use that to try and justify what they are doing. They do not care about any person with autism unless they support what they are doing.
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steppemum · 07/09/2019 12:58
OK, I am going to change my mind.
I have just watched a couple of his videos and it is patently obvious how much they love her, and it is documenting their daily life.
OwlBeThere · 07/09/2019 12:58
They don’t lock her in her room, there is a stair gate over the door in order to keep safe. You know, like millions of parents do for their toddlers, and Abbie is essentially a very tall toddler. You only have to watch their channel to see the love they have for her. And they absolutely do not film her severe meltdowns.
They’re raising awareness and acceptance. Leave them alone.
lilypips · 07/09/2019 13:01
If she's exploited, do you think all the other YouTube/Instagram families out there are exploiting their children too?
Yes. Yes I do. Absolutely.
steppemum · 07/09/2019 13:01
having said that, I notice he has one entitled 'potty training and autism' and the photo shows abgail is quite old. I wouldn't even click on that, as I felt that not not appropriate.
Ilikethisone · 07/09/2019 13:03
To be fair. Most people dismiss anyone who is disagreeing with them.
My son has autism. But I am unsure if you point is that families with autistic children shouldnt post on YouTube (and therefore social media) at all. Or that all parents shouldnt be posting on social media as all children can not consent. Or that it's the way he is posting.
FWIW, I am NT and my parents locked meningitis my bedroom. Mainly because I injured myself several times sleep walking. Its was a very real problem in my teens. And it was dangerous for me.
Tolleshunt · 07/09/2019 13:03
I haven’t watched the videos, but I can sympathise with a family who wants to make as much money as possible in order to pay for therapies for the child. These do not come cheap, and can make a real difference. If it were the difference between the father being able to be at home, pay for therapies and save for the future of the child, as opposed to being out of the house 60 hours a week working a job that pays far less and won’t provide enough for private therapies, then on balance I think the YouTube videos are the lesser of two evils.
I understand your unease about exposing the daughter, but as others say, it is up to the parents to consent for her, and providing it is an honest documentary of real life, and she is not set up to meltdown, etc, then I don’t think they should be stopped from doing it. Better that than the child be left to the mercy of state services. It’s not exploitation if the money made is for the benefit of the child.
NameChange84 · 07/09/2019 13:05
The blood and gagging one isn’t exactly how most of us would consent to be shown to the world either (and the child that is gagging is another autistic child, not Abigail.)
And yes, I am vehemently opposed to all children being put on YouTube and not a big fan of Child Modelling either.
OwlBeThere · 07/09/2019 13:05
&steppemum, the potty training video doesn’t show anything inappropriate. It’s just a discussion video on how they manage her toileting needs in very general terms.
x2boys · 07/09/2019 13:06
I haven't seen this and I wouldn't film my child and put him on you tube but as the parent of a severely autistic child maybe he wants to show what life is like at the other side of the spectrum? Most programmes ,articles etc about autism show very successful people and focused very much at one end of the spectrum as for locking his daughter in her room at night ,I get it I guess it ,my son sleeps ,but in my room as he would be up.all.night otherwise ,I know people who have severely autistic children who wander the house ,turn the gas taps on etc .
Mia1415 · 07/09/2019 13:06
Posting this is actually giving them more publicity and money as people will want to check out their channel.
There are thousands of YouTube channels showing children (many autistic or with additional needs).
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