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?

The the Autism accessor knows more about Autism?

@OutofEverything
If they want they can go for a re assessment and get diagnosis checked. No one is stopping them.

It's not helpful to their circumstance to tell strangers on here that their child was misdiagnosed and do nothing about that. It's really unhelpful to those who are diagnosed to have the idea spread that diagnosis is so easy to get and misdiagnosis happens so easily.

Taking OP situation her experience of getting a diagnosis is so far from the normal experience. Maybe they pushed for a diagnosis maybe the team were on a different agenda, maybe it was just an error.

Misdiagnosed autistic is extremely rare.
Being autistic and struggling for diagnosis and support is very common.

How do you know misdiagnosed autism is really rare?
I am not saying it is or it is not, but as far as I know there has been no research on how often autism is misdiagnosed. So this is purely your opinion.

It's not google, it's the law.

@Whatevercanbedone This is a mum asking for advice on a parenting forum. It is totally unfair to tell her to stfu about her families experience. It is not her role to promote a wider narrative about autism.

I don’t know why anyone feels they have the right to presume to be ‘open’ about anyone else diagnosis , even their own child. It is no one’s place to reveal anyone’s private medical information to the internet especially if that person is too young to consent. It’s not your place to try and destigmatise the world against a condition that you don’t have, particularly using an individual who cannot give their permission for you to do.
However this whole idea that you can’t be relieved if you find out you don’t have a health problem is ridiculous. Also then to try and remove public information about that misdiagnosis is entirely that persons right.
More important than trying to make someone else’s existence a triumph for the autistic community it is better to respect every individual’s right to privacy.
The information should be removed because it distresses OP’s daughter and it was made public without her consent. Debating whether or not the OP’s daughter has been misdiagnosed and whether her subject choices suggest that she has autism is not relevant.

Autism/ASD today is used in such broad, vague to cover many, different personality profiles and ranges of additional needs, as opposed to the narrow, classic diagnosis. Anyone suggesting masking needs to be aware that toddlers with development delays that are obvious to all, don't really have the same condition as people who appear fairly typical but feel that they are masking. That actually sounds akin to what used to be known as a Schizoid type.
Its a shame that we have lost the old PDD-NOS diagnosis. (apparently professionals thought it too vague - the irony) Because it was literally a developmental disorder - it was back then accepted that many, many children did (and do) develop out of delays and sensory issues and unusual behaviours.
I'm so pleased to hear OP that your daughter is doing so well.
It really sounds possible from what others are saying, that you should be able to get these references removed if she wishes. However, because of the broadening of ASD over the last few years, and also because a lot of people seem to assume in a sexist way that analytical women are all 'on the spectrum somewhere', I'm sure it wouldn't actually cause her any problems. In fact, its more likely that educators/employers may fall over themselves to offer her support that she doesn't need.

@OutofEverything
There are a quote a few documented cases of people who were misdiagnosed as personality disorder when they were autistic.
Theres plenty of evidence of people being told NT and later being diagnosed autistic.
There plenty of adults getting late diagnosis.

I haven't found any documented cases of people receiving a autism diagnosis and then being diagnosed NT. I'm sure there are some just like for all the documented cases of being autistic and not getting diagnosed there will be more that aren't documented.

Maybe more will be documented in future as people like OP daughter dispute their diagnosis.

@OutofEverything
I haven't said anything like stfu at all.
🛑

Put your own face to it fine, but a child cannot consent

I don't, personally, but a lot of people do. It's just modern life. People do it all the time.

I don't think it's ableism, most people don't have an understanding of the broad spectrum that autism entails so a number of assumptions (that would be correct if she was autistic) will be made about her that she may not want

Hopefully Google will sort it out for you OP. Good luck and I hope your daughter is happy with their response. It should hopefully all get sorted out for her. Don't beat yourself up about past decisions- we can only do what we think is best at the time.

“Misdiagnosed autistic is extremely rare.”

I have no doubt that is true. However, is it still extremely rare if it is diagnosed when a child is under three (as our DD was)? Her paediatrician said not so much!

Anyway, this thread is supposed to be about removing things from the internet!

Following with interest. My 16 year old DD had a huge MH breakdown and went missing last year. There was a missing person media release and she is still on the internet for it. She was at risk to herself and no one else. I’ve contacted individual websites with mixed results. Google refused my request but I’ll try again. Failing that I will use some of the companies suggested in PPs. She’s doing much better now and this info out about her is of no use to anyone anymore. I understand where OP’s DD is coming from. She might not be ashamed of her ASD diagnosis, just she doesn’t want that to be the first thing people know about her.

I do think think the OP was trying to be 'helpful' to those that are diagnosed with autism. She was looking for advice on just her daughters situation.

It's really unhelpful to those who are diagnosed to have the idea spread that diagnosis is so easy to get and misdiagnosis happens so easily.

Diagnosis was 'easy' for my ds to get. As was his adhd diagnosis. Not everyone's situation is the same. Not everyone that posts about autism has to be 'helpful' to everyone with autism. It is OK to sometimes just talk about your experience becasue every experience is different and most people understand that.

I can't relate to lots of the posters on mn that post about their ND children becasue my experience as a parent of an ND child has been quite easy. I don't tell everybody else to shut up, that they are misrepresenting what it is like and making it sound far more difficult than it really is. The same should respect so go the other way. The OP wasn't denying anyone's experience just telling her own.

I’m not sure the pushback is about misdiagnosis at all. I think a lot of posters probably post a lot about their children and their health and conditions online and they are reacting to implied criticism of it.

Well, they should feel criticised because it’s wrong. And they know deep down it’s wrong otherwise they wouldn’t be so angry. Children can’t consent. They deserve their privacy. Stop exploiting them online.

I can understand your daughter's upset, it must feel a bit weird and exposing. And I don't think society has found a fair way to navigate dealing with the exponential growth of the internet and online personal data yet

At the same time, you cannot prepare for and account for all future actions of potential employers.

In my 20s I applied for many jobs which I was a good fit for. Not prestigious jobs, minimum wage stuff. I only started getting interviews when I went through an agency. Eventually, several other life experiences led me to realise I'd been rejected when applying directly due to my foreign name. Whereas the agency met me and secured jobs on my behalf.

Do I wish I had a British name so this hadn't happened? No! I now wouldn't want to work anywhere which was as racist as to reject applicants on the basis of their name anyway. I'm not certain that an employer who rejected someone solely on the basis of them being autistic would be worth working for either.

@MarieRoseMarie
People shouldn't post about their kids in any way that's identifiable. People can ask for advise and share experiences in a non identifiable way. OP wouldn't have envisioned that the interviews at that time would be so accessible in the future.
I did comment trying to explain why people have reacted to the misdiagnosed aspect.
I didn't need to post about how to remove the OP shared information as this has been answered several times prior to me posting.

@IceskaterTwirl
Diagnosis before age 3 isn't common. There is little to no documented cases of misdiagnosis of autism in people who are NT. But that doesn't mean it doesn't happen just that it is rare.
If you DD believes she is NT and wanted to she can ask to be re assessed and get autism removed from records. This is her right to do.

You have had lots of helpful advise on removing the info from Google searches. And I hope this is successful for you all.

I feel for you OP - fifteen years ago smart phones and social media were fairly new still - honestly most people had no idea even then that the internet would end up being such a huge part of our lives. You had good intentions. A lot of the websites I used regularly 15-20 + years ago are gone without a trace, a lot of stuff years ago online was deleted and then gone forever, but as time has gone on and true to the name 'world wide web' more and more pages are linked and information spreads across sources. It really does sound like this can be solved though. I'm sure that the media and charity's involved would be very understanding.

No! I now wouldn't want to work anywhere which was as racist as to reject applicants on the basis of their name anyway. I'm not certain that an employer who rejected someone solely on the basis of them being autistic would be worth working for either.

While I don't disagree it certainly easier to think this way after you have some work experience under your belt.

Also people interviewing you may be the people you end up working with especially with the larger companies and graduate recruiting.

My first job - graduate recruitment - I stopped less than a year - I was interviewed by different office to final placement and no hint of issues. It was a a cross over area tech and another male dominate industry - and it became clear being female was counting against me - so I got another job with more money mostly possible because I'd done 12 months in industry by then. Sometimes it really is all about getting your foot in the door.

I don’t quite understand what you’re saying but if you mean how would they know about the autism diagnosis from Google then the OP answered that in her first post - they put a lot of stuff online about her diagnosis when she was small.

Thank you all so VERY much - I have now instructed a firm and they are 100% confident that, as so many have said, under 'right to be forgotten' legislation, all references to DC's diagnosis will be removed from search engines. Absolutely thrilled. I love Mumsnet - what a great resource! Wishing all PP the very best.

I am pleased to hear this. It's her feelings that matter not anyone else's.

I too am wondering why my comments were deleted.
Especially as I had 2 non verbal children at that age