Youtuber exploiting his severely autistic daughter - please help

[username108]

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.

Also social services paid them a visit the other day, as they said they lock their daughter in her room overnight for her safety.
SS told my friend to lock her dd in. This was (aged about 8yo) after she had got out of bed at 2am, climbed up to the top of the kitchen cupboards to get the house keys that mum had put there to hide from her, ate a few coins because she found them also on top of the cupboard and was brought back by the police at 4am when they'd found her outside in the playground half a mile away.
This was not unusual behaviour for her at that age.
It was deemed to be in her own interests.

SHE IS NOT LOCKED IN. there is a gate on the door so that when she wakes up and leaves her room, they hear it, and then can go to her.

And again whilst I wouldn't do.it and no she can't consent ,what about all the reality t.v. Programmes ,Teen mom,20 kids and counting etc , those kids have been on tv since the day they were born and they can't consent either .

Fathering autism are raising awareness, saving money for their daughters future and have been setting up a trust for when the parents are no longer around. They deliberately don't show the worst of the meltdowns or when Abbie is lashing out at them or anything intimate e.g. the potty training was a discussion, they have never discussed periods for example as its to intimate. They take their daughter out in the real world as much as possible, I don't see a problem with that.

Nope, I don't disagree with him at all. Autism can be living hell on the carers. Therapies, respite, etc are extremely expensive and hard to come by (and yes, that includes here, because if you think the NHS provides well for this, you're deluded, and they are in the US). These parents have to care for this child for the duration of their lives and are probably terrified what will happen to her after they die or grow to infirm to care for her. They are doing the best they can to provide for her. No one is forced to watch their channel.

I agree, x2boys, no one shows how utterly debilitating this condition can be.

I think their love for their daughter is very clear and they try and be respectful as possible.

I certainly wouldn't choose to make a living from featuring my kids like that, but millions of youtubers and other influencers do. I really don't think this family are a particularly egregious example. At least they are raising awareness and saving for their child's future rather than just hawking clothes like most influencers.

My son is in a room at night that he cannot leave. Social services know and approve. The alternative would be residential care where he would probably still be put in a room that he cannot leave.
I am not keen on autism parent where the child is identifiable stuff, on the Internet but I feel that they way about other parents and children too.

I haven't watched this or heard of this channel. My son is nearly 11 with high functioning autism and adhd. He can have some violent meltdowns some of which I have filmed to show Camhs but he get more angry being filmed!

I would like to blog/vlog or even write a book about our daily issues and how we manage etc as a sort of support network for other families and to raise awareness BUT my son would hate to be talked about on you tube or videos of him having meltdowns or even just normal struggles online. He doesn't want people knowing he has autism and adhd bless him he just wants to be "normal" his words not mine but I understand and respect that and as a result would not betray his trust.

I am not on social media myself, I understand people posting pics/videos of their kids so their friends and family can see but equally I think it could potentially embarrass the child when they grow up to see their early life was documented on Facebook and Instagram. Once things are online they are there for anyone to see so I do think some people should be more mindful of what they post about their children.

What are people supposed to do, not sleep? Put her in a home? That's the reality of caring for someone who has a condition that means they don't sleep. It's impossible for one or two carers to keep up with unless they take steps.

I've been watching them for a few months, it must be so hard raising a child like Abbie, I don't think anyone can judge who hasn't been in their position, I don't think they show the worst of her meltdowns, they do explain why and how they deal with her.

They have discussed periods and how they deal with them.

My son is nearly 11 with high functioning autism and adhd. He can have some violent meltdowns some of which I have filmed to show Camhs but he get more angry being filmed!

Yep, my son is exactly the same! Have also filmed as he, like your son, masks and professionals need to see this as he needs help.

They are making money can you really blame them

owl
It’s just a discussion video on how they manage her toileting needs in very general terms.

I wasn't expecting him to have filmed her on the loo, but she is what 11?13? I'm not sure, and I think discussing her toileting needs is pretty much an invasion of her privacy at that age.
Not the same as talking abot a baby's nappies is it?

I'm in two minds. I don't even put my kids (3 and 7) who aren't autistic on the internet - especially youtube having read and seen some really sick stuff on there - because at primary ages they cannot consent. I'm not sure I'd have liked my parents splashing me all over it as a kid. In fact I know I wouldn't have thanked them.

• so OP I agree with you in that respect, BUT if it helps fund her treatment (probably incredibly expensive) and they have no other way of helping her then it's one of those situations where everyone has to accept it. So many kids have to go through a lot emotionally just so that their parents can earn a living for them, out of neccessity not choice.

I just hope it is all legit and they are not spending a penny of the money on luxuries or crap for themselves,

Completely agree with you OP. Unfortunately I'm not sure you'll have much success on here as, from experience, the 'you're too "high-functioning"[ugh] for your opinion to matter' attitude abounds

Reading the viewers comments on the videos, it looks like the general consensus is that other parents find them helpful. Is that such a bad thing? I understand there's a consent issue here but I also dont think it's doing her harm. If I had a child like Abbie, I'd be grateful for the videos they share about day to day life and methods they use. If they were making fun of her or letting her come to harm, it'd be a completely different story. That said, I'm not autistic, I dont have any children or family with autism, and so maybe I'm not well placed to comment.

If no one ever discussed publicly the toileting needs of severely disabled older children and adults then their needs would never be catered for - Changing Places for example.

but there is a difference in discussion the needs of children, and in discussing this one girl and her toilet needs isn't there?

Without actual real life examples nothing changes.

I wasn't expecting him to have filmed her on the loo, but she is what 11?13? I'm not sure, and I think discussing her toileting needs is pretty much an invasion of her privacy at that age.Not the same as talking abot a baby's nappies is it?

Why is it not the same?

And would you expect carers to never pu locally discuss how they cope managing the personal needs of the person their care for with other people?

Lots of carers rely on other carers and social media to discuss things and to get tips and support.

When I am teaching about anything to do with children, I change the names of the children who I used as case studies/examples, even if the example is harmless and positive. And if the example is a photograph, yes have permission, and I also change the name, to make it anonymous.

And that is when teaching to a group in one classroom, not for the whole world on the internet

My db is severely autistic. We lock him in at night, otherwise he leaves and wanders around town (often without a coat or shoes), eats until he’s sick, floods the place... the list goes on. Locking him in is the safest thing to do as the risk of there being a fire is small, the risk of him hurting himself is almost certain. I imagine these parents have done a similar risk assessment and believe they’re making the right choice

it must be so hard raising a child like Abbie, I don't think anyone can judge who hasn't been in their position,

Why not? I'm not judging their parenting or love, I'm judging their choice to film their daughter and put it on you tube. I don't need to be in their position to do that.

I agree with you OP, I too am autistic and I have two autistic dc. I have never shared my sons meltdowns on social media, so many parents do. People seem to forget that underneath the autism and resulting behaviours is a real person with feelings! I have known too many ‘low functioning’ adults who are able to communicate when given the right tools and express the horror of being treated like less than a human being by people who should love and protect them.

Would those of you who support this man, like to have a family member take all of your most personal, vulnerable and worst moments and share them on the internet to make money off you? I haven’t shared photos of my children online since they were toddlers, even before that I was very careful about who could access their photos. My dh and I chose to stop sharing photos and anecdotes of our children when we realised that anything we share has the potential to follow our children for the rest of their lives!

I am deeply uncomfortable at the way this family exploit their daughter and I know that a large proportion of the Autistic community feels the same. OP are you on any Autism Facebook groups? (Groups for adults with autism rather than parents of autistic children) I would post on the Facebook groups where you should get more support there.

I personally don’t agree with exploiting children or vulnerable adults on social media. It doesn’t sit right with me.

but there is a difference in discussion the needs of children, and in discussing this one girl and her toilet needs isn't there?

Every childs needs are different. Individual needs do need discussing.