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?

Those questioning the OP and her daughter's motives should really give some thought to how they would feel if their own medical history was splashed across the internet without their consent.

You are not alone OP, and at least what you did was many years ago before we really understood what the internet would be in 2023. For example, I always Google new hires now, and I am sure that would not have occurred to me in 2005. What I really fail to understand is friends of mine who still share far too much about their kids and teens on a pretty regular basis. How can they not see what they are doing at this point? I am thinking of things like posting about a 13 year old's ongoing mental health issues. I do not understand how they don't get it and TBH I have really minimised contact with some people because of it.

OP it wasn't so much your post that upset me as one or two others, especially the one proclaiming that the only autistic people they know to be successful in their careers were able to hide their autism from their employer. Many people with autism - DS included - will never have that option.

@MrsRobinsonsHandprints I think to say you hate my post is a bit much, but I do see your point and what you've said is fair enough.

OP I wish you and your DD the very best.

BigCheeseSandwich, out of curiosity, how did the Media Organisation you work for justify those stories still being the 'public interest', particularly the 1st one? I mean the second one with details might be justified but that is the grounds on which journalists, publishers can refuse (mostly).

Ds didn’t speak till 4 years old. He was still in nappies on his 4th birthday.
Dd was came completely silent. Toys were definitely not played with in the normal way.
Firstly I would never have considered there was something wrong with them that needed diagnosing let alone pursuing an autism diagnosis

The only things I did pursue for them were swept under the carpet and told to wait and see. Dd was diagnosed with dyslexia at 14 and ADHD at 21
DS has an adhd assessment next month, he is in his 20s and he was diagnosed with dyslexia and dysgraphia when he was as 17. So that was really helpful

I can only think you must have paid for the diagnosis or because your Dh was someone who obviously had a lot of standing in the community the autism diagnosis was pushed through because that is what you were pursuing.
The NHS wouldn’t have diagnosed autism at that age on someone that young who wasn’t so severely disabled with it and to get a diagnosis on the nhs for anything for the average person is somewhere between difficult and impossible

I don’t get the leap between being non verbal at 3 and not playing with toys the way you think they should be played with = autism

I came to say there's a thing where you can apply for it to be erased. Just do that, and hopefully that solves it. Poor kid, but your intentions were not bad.

It is not just about what you share without thought as a parent, I am guilty of that with baby photos of my son on FB in 2007. I have asked for his data to be removed but you should also be aware of other third parties that can share your child's personal data. Like in education, is the school your child going to compliant with Data protection laws for example?

There is a right to be forgotten.

ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/individual-rights/right-to-erasure/#:~:text=Under%20Article%2017%20of%20the,be%20created%20in%20the%20future.

My friend's son was diagnosed at 2 and 7 months, after the 2 year check up by the health visitor. I know she didn't pay for the referral and there was a question mark over what school choice as by 4 it was categorical. This was nine years ago. Is it concerned with provision across regions?

Those who do not recognise that there is discrimination if you have certain conditions like autism are very naive. Its fine when they are all at school, but adults do judge and discriminate. Its why loads of people hide diagnosis at work.

And I have no idea of OPs DD was misdiagnosed but of course people are misdiagnosed. People are misdiagnosed with all kinds of conditions from broken bones to cancer, why should autism be any different?

Ridiculous smug comment which is not based on any kind of knowledge. Of course all the parents of kids with conditions that are regularly misunderstood or not catered for in our society should just keep their mouths shut and not promote inclusivity. Like it or not, it’s putting a human face to a condition that really gets people thinking. You did the right thing OP.

Agree with those suggesting Google's “right to be forgotten”. People have managed to use it to hide affairs (!) - so I really hope you can make it work for this. Good luck with it.

This is very sensible way forward.

I was diagnosed with SEN conditions in my 20s and told I had to declare it with employers never once went well for me as people had very fixed ideas of what it entailed which were wrong.

It will probably be easier to be open once her career is more established is she needs or wants to be then.

The diagnosis may still be helpful to her at university to asses any additional help she may decide later she needs.

I do see many idealist posters on here when IME in RL change is often patchy or much slower or never really going to happen - so I can see where your DD is coming from.

We've always been careful with DC on-line as we, DH and I , are in tech area and we do have a very uncommon surname even so 12 months ago you search for my kids you'd find odd thing - since then a niche internet famous person from another country has got big and they use our surname as a first name - you can still find DH searching with his full name but it obscures the kids.

How awful for her. Is it a common name? I share the same name as a porn star. I have often wondered if potential employers have googled me and wondered if I'm the same person.

'This is chickens coming home to roost, I’m afraid.'

Ah, the smug benefit of hindsight.

@OutofEverything
People get annoyed with the misdiagnosed with autism because of the narrative that so many of those diagnosed don't really have it.
Our experience of years without support and schools thinking it was parenting. Being sent on parenting courses which just didn't help at all. Meanwhile the child mental health is continuing to worsen.
When finally get the diagnosis, support still has to be battled for. And people will say well it's only really mild or comments like anyone gets a diagnosis these days or childs fine with us.

They see the masked version that is taking a toll every second and that which later will impact the whole family to the point that everyone of us health has worsened due to the stress. But the worse thing is seeing your child in such distress you wonder how much longer before something awful happens.

So concepts like autism lite, mild autism, misdiagnosis feels like someone turning the knife.

Could misdiagnosis happen yes but it is so unbelievable rare/ unlikely that someone is diagnosed with autism when they are NT.
There are countless ND people struggling to get a diagnosis and support through.

morning OP. all you need to do is to email any media outlets that have published it - explain it's causing great distress. in all honesty, it will likely be more effective if your daughter emails and says she wants the story taken down as she couldn't consent at the time and it's upsetting for her now she's older. any major news org will remove same day, if anyone refuses go to press ombudsman - it won't be as difficult as you may expect to have it wiped, and may bring you and your daughter some relief. good luck!

Hi all,
Apologies for it having taken time for us to respond to reports about this thread, we wanted to go through it with a fine toothcomb. As you can see, we have removed several posts and will be having words with several posters.

First and foremost, while we can never guarantee 100% that someone is genuine, this poster has been with us for many years and has a decent posting history with us so insofar as we'd vouch for anyone, we would do so for her.

We'd also like to say that we're surprised at how this particular thread has gone. We do understand there are sensitivities when it comes to matters of our children and SN, of course there are, but that must work in both directions and good faith should be the starting point for any discussion on Mumsnet.

Despite the perception in some quarters that there is a cohort on MN who make a point of deriding those with autism diagnoses we'd really like it to be noted that we do not see evidence of it.

Further, if the line 'if you've met one person with autism, you've met one person with autism' has any validity then surely the fact that one parental experience is somewhat different to another can't be used as evidence of wrongdoing? Particularly not with services being so locally variable, and with finances also frequently being a factor in accessing assistance.

Mumsnet is a site primarily for peer support, and we have systems in place for those instances when one user suspects another of being dishonest. We would ask in future that our members use them rather than mount an attack on the boards, and we are grateful to those who did report.

We'd like to reiterate that we have no reason to suspect that this OP is being dishonest, and that we would take steps if we thought so.

Thanks MNHQ. I agree. I am appalled at the way this thread has gone. For some reason the op has been attacked from every angle and I am not sure why.

Op, you did what you felt what was right when your daughter was young and you are doing your best to respect her wishes now. I don't know why you are facing such vitriol

I know plenty of children who had speech therapy at that age.

Why did your child have a speech therapist at 2 or 3 years old?

I got DS assessed between 2 and 3 because while he spoke a lot he was difficult to understand and struggled with certain sounds. I myself had many years of speech therapy as a child and new earlier with waiting list is better.

They said it was fine - but 6 months later at nursery they had him assessed again. We also had to get his hearing tested fair few times as he was just passing and failing so they kept checking.

So I don't think it odd getting checked at this age.