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.

differentnameforthis

Have I claimed to know your life? Nope. You claim to know I'm angry and struggling.

I never said that people with severe autism don't have feelings. I discussed the lack of negative reaction to being filmed and I have never seen a vlog of her upset at watching any older vlog.

Abbie is very properly supported because her parents have made sacrifices. What you guys want to do is villainise them and start a hate campaign against them. I have seen this happen before to other people, from horrible sites such as tattle. These people start small, then start contacting sponsors, and create such a controversy until there is no stream of income.

But that income is for Abbie's benefit and that is fucked up, there is no other way to say it. There are so many people out there who are jealous, want to claim to protect her, but really just want her family to be broke.

But you know what happens after that? Abbie suffers. How will they pay for all of her therapy then? How will they pay for their home?

So please, go on and on about the differences of autism. Like I don't know! I have twins and they are nothing alike. It's really a distraction from the main intention of this thread, which is to make sure Abbie's family become financially worse off.

I think this is getting incredibly heated unnecessarily.
The old adage that if you know one autistic person you understand one autistic person holds true.
I’m an ABA therapist, I do what Abbie’s therapists do for a living so have a professional and personal interest in the Maas family blogs, and therefore watch them all pretty much, and have spoken with Asa and Cilla a few times. But I don’t know Abbie.
I will address something that was said about how she ‘pushes the camera away’ and Asa continues to film her as proof of her being ignored...this has been taken out of context. Asa often asks her to ‘close out’ the vlog by putting her hand over the camera. Sometimes he’ll ask her to ‘say goodbye’ and she will push her hand into the camera, but he’s asking her to wave first so he will ask again as part of her therapy is working on listening to and responding to requests. That’s all that is.
Also, Brandi who is the ABA therapist who works with Abbie is legally bound to report any abuse or concerns as part of her job. She hasn’t done that. So I think the issue that DFS need to be involved is addressed. Whether you agree with children being in the public eye is an ethical discussion with huge grey areas. It’s not something that’s going to be solved here, but I do find the idea of asking here to report them and stop them winning an award is really strange.

I've looked and read. A lot of youtube fans commented on one video and said they were autistic themselves! There were no negatives from them.

It seemed fairly innocent to me and I'm sure it's helpful to parents of autistic children. From my point of view, I felt a bit embarrassed but I do not like being a voyeur, things like that make me feel as though I am and I'm uncomfortable with it. That's just me though, if it is useful to others all well and good. He certainly is an awesome dad.

shortyawards.com/10th/fatheringautism

@PenguinPop - Have I claimed to know your life? Nope

You keep telling me what I want, based on nothing.

I said you sound like you are struggling because of your posts, I also apologised if I got it wrong.

@Rachelover60 You must be low on the autism spectrum, ie high functioning, username; you do not come across as an autistic person.

Can we not do that, please? Plenty of autistic people have the ability to write very well, and to be able to do so should not be used to question their autistic status. Plus it looks like you are trying to discredit the op.

I work in adult social care, in order to stop someone leaving the home unattended they need to be assessed, as does the care home, and a Deprivation of Liberty Safeguarding put in place. Is this the same for children being locked in rooms, or is it different?

No. Parents do not have to have their children, parenting or home to put up a baby gate. Which is what happened here.

In fact with children, any child, there is an assumption that a parent should prevent them from leaving the house if the parent can reasonably assume the child would be in danger. Most parents to not let toddlers come and go as the please during the day and night.

TruthOnTrial genuine question. How have you studied ethics, without discussing the impact emotions have on ethics. And how ethics is changeable as per the situation. Especially when people have to make decisions on behalf of someone else.

For example. Its unethical to lock your partner in the house at night, hide the keys so they can not leave until you get up in the morning. It is NOT unethical to lock your toddler in the house, secure their bedroom with a baby gate to prevent them leaving their room or the house without waking you.

@Ilikethisone

Thanks. That's so obvious now you've said it, I feel so stupid for asking 😂

@TheJellyBabyMadeMeDoIt to be fair. I kind of get why you questioned it. Especially when people throw so much bias into wording like the OP did.

The ops wording suggested a far worse situation than 'parents use baby gate', which is the actual situation.

However, some parents do need to secure their children at night. I am sure families in situations where they need to gor their own safety do not do this lightly. And again, its their job to keep their child safe.

We don’t have a NHS here. Health insurance is very very expensive. Most companies also have a lifetime limit...so for a child that is severely autistic it is possible that the health insurance would be thousands of dollars a month. Even AFTER you pay for your health insurance you have co-pays. Each visit to a primary care doctor is an average of $25, each specialist dr visit is average $45. Tests/xrays are typically $75 each. A course of therapy would usually be billed at the $45 per session up to limit set by insurance company- they usually authorize blocks of 6 sessions and you have to apply for more. Generic prescriptions are avg $10/30day supply, and brand name prescriptions are avg $40/30 day supply. An ER visit is $250 whether admitted or not. This is WITH health insurance. A lot of foreigners think that having health insurance means that healthcare is then free/funded at point of service. It isn’t. All health insurance does is give you access and a discount.
I think it is a good thing that her parents are both raising awareness and doing the best they can to fund Abie’s health care which must be very expensive. They are also being smart thinking ahead to how will Abie survive once they are dead and gone.

You must be low on the autism spectrum, ie high functioning, username; you do not come across as an autistic person.

Absolutely astoundingly ignorant. You're embarrassing yourself.

I agree with you OP. As the parent of an ASD teen, I could not imagine posting any images online without his consent. Everything is mortifying enough being a teenager (whether ASD or not) without having no control of an online persona that is presented as 'you'. Maybe there's an argument for showing this kind of material for educational purposes or to achieve better understanding of life with autism but a cash generating YouTube channel ain't it.

Do parents of Disabled children get any financial help Doctor? Here in the
UK children with disabilities can be awarded DLA ( disability living allowance) if they meet the criteria ,and depending on the child s needs it can be paid at different rates, it's a non means tested benefit ,but being awarded it can impact positively on. various other benefits

Morning, everyone. We've had to make quite a few deletions on this thread so we just wanted to pop by with a reminder to post by our Talk Guidelines, please.

The thread has turned into a bit of a personal spat in places and we'd really like to get it back on track. We understand that people have strong feelings about a story like this, especially those of us who are parents to a child with autism or have autism ourselves, but we do need everyone to post in a polite and civil way, nonetheless. We will also delete any posts that are disablist.

Thank you.

@HebeMumsnet

I think leaving a thread up like this is in incredibly poor taste. This is a real family that people want to attack and try to get people to rally around to contact others/report which is harassment. Harassment is never OK, especially not when the people involved have been deemed a safe, caring family by all sorts of healthcare professionals and US government workers. Honestly, it makes me sick. Has Mumsnet sunk to the lows of tattle.life?

Disgusting.

I always find those with high functioning ASD weighing in on how those of us with more severely autistic children should parent/talk about autism interesting.

I have spina bifida occulta - open vertebrae, unsightly lump, more likely to develop tethered spinal cord and back pain, but fully able. I suppose I should start gobbing off to parents of children with the severe forms of spina bifida about what they should do/say/feel?

I always find those with high functioning ASD weighing in on how those of us with more severely autistic children should parent/talk about autism interesting.

'High functioning' has no bearing on the severity of someone's autism. It only means that the individual has an IQ over 70. Nothing else.

No ,ImNotYourGranny ,but it has to be said that someone who has a diagnosis of what would have been Aspergers ,has very different needs to my non verbal, not toilet trained nine year old and just because both are on the Autistic Spectrum does not mean they are the same

Again...the OP is autistic. Disagreeing with her is one thing but getting personal and being a sick to her is another. There really is no need.

*dick.

No ,ImNotYourGranny ,but it has to be said that someone who has a diagnosis of what would have been Aspergers ,has very different needs to my non verbal, not toilet trained nine year old and just because both are on the Autistic Spectrum does not mean they are the same

The only difference between an Asperger's diagnosis and a classic autism diagnosis is typical language development vs atypical language development. Everything else is entirely dependent on the individual.

Understand the family wanting to raise money to help their DC, now and in the future.

But this young person has no privacy, and hasn’t consented to being filmed and the films being distributed.

What the money is actually spent on IS private: it could be health and personal care, savings, or other things. We don’t know.

There are some big ethical issues here. I don’t think it’d be appropriate for the film maker to be chosen for an award.

High functioning is an old terminology for what the DSM5 now calls level 1 autism (requiring support), compared to low functioning or level 3 autism (requiring very substantial support).

There's very little awareness about level 3 autism, and the toll it takes on the parents mentally, physically and financially, specifically because persons who have it cannot (literally!) speak for themselves. So anything that raises awareness is good in my opinion.

And specifically regarding fathering autism, his vlog is a comforting and informative resource for me as a mom of 2 boys whose autism is almost as severe as his daughter's (they're a few years younger so I keep hoping they'll be higher functioning when they reach her age). I don't find it exploitative at all but gives a very human side to parenting a child with such severe disability. Their family is loving and fun and their "this is our life and that's how we're dealing with it" approach is very inspiring.

And if they're making money out of it, good for them! It's extremely hard to maintain full time work when your child needs 24h supervision, and the current costs of lost income, respite services, therapies... (paid services vary by state) and future costs of therapies, caregivers, assisted living, unemployment or underemployment of the person with autism, can easily make a family slip under the poverty level.

But this young person has no privacy, and hasn’t consented to being filmed and the films being distributed.

Why is it only an issue here though?

No child can consent. Mummy bloggers, BBC programmes, YouTube families etc post about their children and their children have not consented. Any of them, regardless of whether they have a disability or not.

I agree there is an ethical debate. But I am wondering why there is a difference between Abbie and other children?

That’s the specific case OP is uncomfortable with.

I take issue with many of those examples too, likethisone