DD upset when she Google searches her name - what can we do?

[IceskaterTwirl]

When my DD was much younger (like 2), she was diagnosed with autism. DH and I, with the very best of intentions, got involved with a local autism charity and did various fundraising events, some of which were reported in the local press/TV. We were seeking to destigmitize autism (how naive) and readily agreed to speak about DD being diagnosed with the disability. We were, sincerely, trying to help other parents come to terms with an autism diagnosis!

Fast forward 15 years and, if DD has autism, no one would know. She was quite possibly misdiagnosed as her diagnosis was when she was under 3 years old. She is now in Y13 and heading for at a top RG to do STEM.

When she Googles her name, autism comes up. She is very upset about this and I totally understand why. She rightly observes that future BFs, employers etc will have preconceptions about her and, as I say, she was probably misdiagnosed.

DH and I feel awful that we have put her in this position. Is there anything we can do to remove old news articles from the internet/social media?

No hate here only love. But I clearly remember being a young teenager and confiding in my -otherwise lovely - Mum (back in the ‘80’s) some awful thing that had been upsetting me for weeks, only to hear her 30 minutes later blabbing about it to the hairdresser! I can still remember the feeling of betrayal and anger that clenched my stomach and I vowed never to tell her anything private again. Our poor kids with everything from the size of their stools to their private medical information photographed, discussed and shared across platforms with strangers and EVEN WORSE people they know/friends’ parents/teachers. And all done by the very people who are supposed to protect them!!! No wonder they’re all so anxious. Jeez, 13 year old me would never have come out from cringing under my bed. Kids have a right to privacy. Lesson to be learned here. If nothing else, delete your Facebook. Xxx

Haven’t read the full thread but I find it odd that OP initially seemed to be an advocate for autism and now it appears to be an embarrassment to OPs DD .

Suggesting that having it in writing will make life difficult is offensive. it is disappointing but it does and will have an impact on people reading the diagnosis both positive and negative (which may not even be correct but even if it was correct is ops DD information to share as and when she wants)

@BonnesVacances But OP's Daugther is unhappy and doesn't consider herself to have autism. That should count for something.

When our dc was 2.5 years old they didn't speak at all, our GP asked the NHS SLT to meet us, and that started an assessment process - it's not to do with making anyone perfect, it's to do with medical professionals taking action when children don't meet agreed milestones.

Don’t let it get you down. There are lots of us who will continue to advocate for our children (and others).

@BonnesVacances fhere are so, so many things that are not a stigma and are not inherently wrong but that people may choose not to share. That’s why information relating to health and relating to finances are generally kept private.

The child’s autism dx has totally derailed this thread. The wider issue is that parents now have the responsibility to be custodians of their child’s digital footprint until the child is old enough to make their own decisions, and a huge proportion of parents are incredibly blasé and naïve about this. I think this every time I see another ‘compo-face’ article in the press because a child has been sent home from school for wearing the wrong uniform, complete with close-up of their face and full name. The press can’t be trusted to make ethical decisions because the content generates clicks and clearly nor can many parents.

We’re going to see a wave of case law in the next ten years as the children of social media influencers start to wrest control of their images and I wouldn’t be surprised if changes in legislation were to follow.

It isn't OP DD job to promote anything, you should be ashamed that you expect someone else's child to right the wrongs of society.

It is possible to be educated on autism and know that being ND isn't anything to be ashamed about but still not want to be the poster child.

Why are so many on this thread deliberately missing the point that OP's daughter is upset and wants her Google footprint removed? It's not that OP is ableist or ashamed or any other such rubbish. She's asking for advice in how she can assist her daughter's expressed wishes.

@Newstartonwards I really relate to this

I have a very similar child - diagnosed with ASD and really needed acceptance/support during school.

However, the moment they reached teens they absolutely rejected this as they said it made them stand out at school, and made them more likely to be bullied. So they still needed support, but wouldn't accept it at school, leaving me to pick up the after school stress and meltdown.

In exams they did quite well, but as they would not allow any assessment for extra time they ran out of time in every exam as it took them longer to process the questions and they struggled with time planning.

They're now at university, refusing to mention their ASD to uni, unable to access support and struggling with everything - independent living, planning time, other people and again it's up to me to help manage their stress, help them in coping with all the many things they are finding difficult. It requires huge amounts of time and effort and I do wish they would accept help from someone other than me because I'm exhausted and stressed - and so are they.

It's tough all round and whilst people say employers are accepting I think the reality is what was represented in a recent news article (BBC I think) that said Autistic individuals have the lowest employment rate of all disabled groups.

No OP is trying to undo something she shouldn't have done in the first place.

Of course OP's DD has the absolute right l to her feelings and choice over what information is 'out there'.
What I find frustrating is OP's lack of understanding of how what she's written might be perceived.
It would have been perfectly easy to ask her question without any detail of autism and the highly unusual history of such early 'misdiagnosis'.
It is little nuggets like this that feed into the misunderstanding around autism.

But it matters to the DD, @BonnesVacances

Whether it should matter or not is a separate issue. But we all have the right to control what we share about ourselves.

If mentioned in an interview re adjustments, she can say that there was a diagnosis and now there isn't. can you not see how that is a major breach of privacy?

Forget that it's autism. Think of it as if it were a medical condition. Would you be happy if an employer could read about that online? Without you ever consenting. I have a medical condition and had to sign so many forms in order for the doctor to publish an article about it - and that was with me being anonymous and just a photo which is non identifying. I had to consent.

As pp said Google the right to be forgotten law.

This is one reason why I’m not comfortable with the huge surge in need for labels with conditions like autism and adhd. They are lifelong labels which may not remain appropriate or even needed as people develop through their lives. Autism itself is such a broad generalised term nowadays I don’t find it helpful, and too often people use such labels as excuses instead of reasons to educate and develop skills. I expect some will want to take offence.

Absolutely this.

It’s unethical to make a child’s personal details, including their image and full name, widely publicly available when they are unable
to consent. End of story. The autism dx is a peripheral issue.

Ds1 had similar, unbeknown to me, he contacted the newspaper and asked them to remove it/archive it/whatever, which they did and so now it's not so prominent in searches.

I'd just contact all of them. Most will oblige.

It's not OP's DD's job to be a poster child for destigmatising ASD if she doesn't want that role. And you shouting at her mother on the internet won't change the fact that OP's DD has a right to her own views on the subject.

I have a medical condition that I'm happy to disclose to people who know me. It's a condition that's often stigmatised, and indeed was stigmatised in a recent high profile missing person case. I don't care and disclose it regularly, when it's relevant, to people who know me. I'm comfortable to do this because these people know me and can regard my condition in the context of me as a whole person.

that doesn't mean I'd be comfortable with my condition being the first thing associated with me when people google my name, as opposed to being just one more fact about me in amongst my professional accomplishments and general personality features and social context.

Unless I’ve missed it, the OP hasn’t said that her daughter (or her) consider it embarrassing or a stigma to have autism. What they don’t want is for a written record to exist that her daughter has autism when, in her own opinion, and the opinion of her paediatrician, she doesn’t. I can totally understand why her daughter would not want to have to go through life explaining all of this. Nor does she want future potential employers to hire her- even partially - on the basis of inclusivity when she doesn’t consider herself to fit that description.