To not believe that my daughter is autistic?

[lionsandtigers21]

I know that may sound bad, but my dd17 seems utterly convinced that she has autism and ADHD and I just don’t buy it. She wasn’t always an easy child, but I don’t remember her having significant sensory issues or huge trouble with socialising. Now she’s a teenager, I think she may be depressed because she self-isolates so much but I think that’s the crux of it. She changed schools a lot as a child and I’ve also had issues in the past, so I accept that that may have caused problems. But I really can’t see how she would fit onto the autism spectrum. Her main argument is that, as a little girl, she would frequently go off on her own to collect stones (her special interest) and talk to herself instead of socialising or playing with toys, but she did definitely also have friends at that age. What she seems to remember as meltdowns seemed to me more like tantrums, and would normally occur if she was taken somewhere she didn’t want to go, although she did have unexplained tantrums as well (usually saying that she wanted to go home when she was already in the house and wanted to go back to being a baby) and I remember that she would cry dramatically as soon as I picked her up from school and all the way home at a certain period. She also told me that she would do things in class that would definitely been deemed socially inappropriate, liking uninhibitedly touching her private area in front of everyone until relatively late on in primary school and ignore the teacher who told her it was inappropriate, but I think a lot of kids are uninhibited? Things that might be considered ‘stimming’ she has always done to an extreme (she once scratched her face so much that I was convinced she had scabies!), but she could definitely make friends at school if she wanted to, even if she liked to be alone sometimes. Sensory-wise, I can’t really remember any issues aside from her hating me resting my head on her shoulder and putting my chin on her head, she also found things like nail filing very uncomfortable to witness. She insists that she struggles with social cues/situations today and engages in ‘masking’ behaviours where she unconsciously finds herself copying the speech and body language of those around her, but don’t we all do that? No one is the exact person at home and at school. She’s done things before that would suggest she’s a bit clueless, like exposing a lie that I told to my parents in a very excruciating situation (which I blamed her for at the time). There’s also more stuff that I could list, but does any of this override her apparent social competence as a child? I think the issues she has today are a result of lack of experience and isolating herself in a dark room rather than autism/ADHD? I don’t know, maybe I’m being facetious. Has anyone experienced this?
Thank you :)

The fact that you also copy others' body language and speech doesn't mean it's 'normal'. Autism runs in families.
We don't all do it.

Autism does run in families, but yes of course we all copy others’ body language and speech. It is how children (and adults) learn what is socially acceptable and how we become part of the group. The difference is most non-autistic children is is fairly unconscious. But if you were to place yourself in a very different context to your normal context eg formal office environment for work, you would look around at how others sit at the table, how they address each other, the manner of their speech, and adapt your own to fit. We all do.

You will not get a remotely balanced response to this on MN OP...

The default response on here is 'how dare you question whether somebody has ASD', that 'the reason half the world is now ND is because we were all too pigheaded in the 80s to recognise that half the world was ND and it has nothing to do with the fact our society is, for many reasons, now much more crap for nurturing a young child and getting crapper and that people are growing up fundamentally unhappy and lacking in resilience as a consequence)

Are you reading a different thread to me? I've only seen a lot of responses saying things like, "None of us can diagnose the DD over the internet but as your DD is struggling it may be harmful and damage your relationship to dismiss her concerns out of hand, and there are enough suggestive features in what both you and DD describe that it would seem worth getting professionally assessed by specialists, especially given the apparent level of distress, but also please bear in mind the potential downsides of an official diagnosis, and the effects of this current societal trend for possibly-spurious self-diagnosis of neurodevelopmental conditions, which hopefully the specialists will be well aware of and be able to take into account". (It's funny, though, how the TikTokers and ex-Tumblrites and Twitter self-DX crowd never seem to self-diagnose, for example, foetal alcohol spectrum disorder…)

Even eye contact norms can be very different. It's a while since I read it, so apologies if my details are wrong, but IIRC Japanese (I think?) children learn from very young that they shouldn't make too much direct eye contact with adults as it's considered quite rude (whereas I remember as a British kid being told things like, "Don't be so rude, look at me when you're talking to me!" and while I suspect modern parenting manuals wouldn't condone that, the societal expectations won't have changed much, and typically-developing children will pick up on that).

[We apparently think that staring at each other's glassy, meaningless eyeballs until you can practically feel the hot surface of the other person's corneas on your own is PERFECTLY NORMAL 🤢]

I don’t understand why you wouldn’t want a diagnosis. You are still who you are regardless. But once diagnosed there are lots of Ah-hah moments. And perhaps some aspects that you can develop which no one is looking for as you are assumed NT.

My mum is in her 70s and recently spoke to me thinking she might possibly be autistic, now that she's pointed it out I think she could be right but we would have always put it down to her introverted personality.

I honestly think with women and girls their difficulties can be so much more subtle and they are more likely to mask. My friends DD was recently diagnosed aged 20, big surprise to me, she's always had friends too and it didn't appear to me that she had any social struggles.

I think you need to listen to what your DD is saying and support her if she wants to seek a diagnosis.

This is absolute BS.

It's not 'fashionable' to be autistic 🙄

Her childhood behaviour reminds me of my 5 year old autistic daughter. Although she has a few more 'symptoms' thrown in. She's very and has lots of friends.

Where exactly can you pay to get a legitimate diagnosis online?

I'm so glad you have taken the responses and observations on board and are now seeking an assessment that will look at a diagnosis.

You say her main struggle is not the making of friends, not the keeping of them. That is very common with Autism.

I get how you could have missed it now with it seeming normal as other family members present the same.

I wish you and your family well

Poppycock

Please believe your daughter if she is reaching out for help and get your GP to do a referral. You may have to provide more information to support this so be aware of that. Waiting times are several years so you might want to go private and have the report ratified by NHS.

I am autistic and had friends. DC has a best friend and is popular…. It isn’t all about the having of friends, it’s about finding socialisation difficult and tiring. Please read up on autism in girls as it presents differently to boys.

Everyone has a bias, yours is very clear. Is it rooted in reality though...?

Children are brought up lacking in resilience now are they? So why is the suicide rate half what was it was in the 1960s?

You may have friend who you believe, based on spending the occasional hour with her child when they were younger, lied to get them a diagnosis but how did they get that child to act autistic on the day? How did they get the school to agree and the person doing the observation while the mother isn't present? You know they spend the majority of the assessment actually assessing the child, right? It isn't just based on what the parent tell them. Or does that not fit your 'balanced' view?

You know they spend the majority of the assessment actually assessing the child, right? It isn't just based on what the parent tell them.

On of the main tools used for diagnosing autism is ADI-R (Autism diagnostic interview - revised). This doesn’t involved assessing the child directly but involves a series of interviews with parents focusing on early life. So diagnosis is just based on what the parent tell them.

https://www.pearsonclinical.co.uk/store/ukassessments/en/Store/Professional-Assessments/Behavior/Autism/Autism-Diagnostic-Interview%2C-Revised/p/P100009201.html?tab=product-details

Can't find anything in that link that says this can solely be used to diagnose someone with autism. Any diagnosis done this way would not follow NICE guidelines. Parental questionnaires and a detailed history would never be used as the only basis for diagnosis.

If you know of anyone doing this please report them, they need to be struck off.

ADI, when used, is typically used alongside ADOS.

A NICE compliant diagnosis is multi-faceted and will involve triangulation across a range of professionals and diagnostic measures/tools, alongside clinical judgement and parent and third party report.

I couldn’t see that my son was autistic as I, too, am autistic. All his behaviours were normal to me.

Many people are self identifying due to tiktok, but those spotting the traits tend to be those displaying them.

Someone with no neurodivergence wouldn’t have any need to relate to such videos, so the fact that your daughter does so strongly means that she should be referred for assessment.

I can get past the idea that you think that touching herself inappropriately in front of classmates is anything other than a huge red flag ,whether it be for autism or any other condition.
Please listen to your dd. She sounds very clued up and self aware .she may very well have reached the right diagnosis on her own .

Cant*

It is very often used without ADOS. Which tools to use and whether it is necessary to use both will depend on the outcome of the first. Where ADI-R gives an apparently clear report it is unlikely that ADOS would be used as it would not be expected to provide much extra information versus resource use.

Interestingly, my assessment was conducted without the parental interview part, because my parents were both of the opinion that it's "just a label" and that it was an absolute impossibility for me to be autistic. As a result, even in the questionnaire they minimised the responses to every question and thus their answers couldn't actually be trusted (as demonstrated by the parts that crossed over with my other half's answers).

It's not absolutely required for a diagnosis, and a good assessor will be able to work around it if it's not useful or possible.

It's not absolutely required for a diagnosis, and a good assessor will be able to work around it if it's not useful or possible

My dd diagnosis was based on ADOS whereas several friends children had just ADI-R. A few had both, some had neither. CAMHS seemed to use ADI-R more whereas I don’t know anyone diagnosed by paediatrics who had ADI-R.

Thanks for the recommendations. It would be really helpful if anyone could explain what might happen during the assessment, and how to go about getting one? We could go down the private route if necessary, but I'm not really sure where to start. From what I'm gathering, her symptoms relate most closely to the PDA profile of Aspergers Syndrome (I know that's no longer a diagnosis), but I'm not trying to Internet diagnose. One of the things that really stood out to me was special interests. She has had them without fail and chews my ear off about them whenever she can! They normally revolve around fantasy/science fiction but do chop and change. She also spoke very precociously and was hyper-verbal at a young age, which I didn't realise could be an indicator of something. She does very well in school and is very gifted in certain areas. Very low self-esteem, though.

Regarding the hyper-verbal part - it's a weird counter-intuitive aspect of the condition that, for many traits, the absolute hyper-opposite of the traditionally-understood behaviour is itself an autistic trait.

With regard to the assessment itself...it can vary by assessor. Honestly, the best thing to do is select a shortlist of assessors and then talk to them candidly about what to expect and how to prepare for it (for both of you). The fact that you're happy to go private is probably a good thing, because the NHS waiting list is measured in years as opposed to a month or two for private assessments.

The most important part is that neither of you should minimise any of your responses. It can be quite brutal and uncomfortable to begin with, particularly because it forces you to look at behaviours that you considered typical from an entirely new perspective. When going through the process late (ie teens onwards), parents often feel like they've failed their child when they see it all written down...but the truth is, it all happens by increments and there's usually no way that it could've been seen (especially when their child is heavy-masking).

And, of course, there's the possibility that nothing seemed out of the ordinary because it's been in the family for generations; "normal" is relative. I know many parents who've been diagnosed after their child's assessor said, "OK, now I think we need to talk about you...".

I hope that's all useful information - I can't give you any specifics about the assessment itself, because I was diagnosed in my mid-40s, and I'm told the process is noticeably different for teens (which is also different to the process for younger children).

*LuluBlakey1 · Today 10:39

Why does she need a diagnosis? If she thinks she is autistic/ADHD to some extent, why does she need that diagnosed? Presumably she wants to learn better coping mechanisms for the issues she seems to have? They can be learned by reading about it. Or does she think she requires medication? Or benefits*

WTF🤣🤣🤣

Learning better coping mechanisms. Do you actually understand what ADHD is?

I have ADHD and I never knew that to cure myself of having a brain that is physically different to a NT brain, all I have to do is read a book

Pity that I have never been able to focus enough in order to read a page of anything let alone a whole book.

There is a fad at the moment for being diagnosed with these issues. In our local authority we have families who pay to be diagnosed with ADHD simply because they get extra benefits- not a rumour before someone starts accusing me, I work with several. The assessment costs about £400 I think but they get a significant benefit boost

Where on earth does an assessment cost £400
Maybe people are paying to be assessed because the waiting list in different areas are so long. I have heard 8 years in some areas

If ADHD is a fad then why do NT’s have such a reaction when they take our meds.
30 mg of Elvanse I have heard is a party drug. NTs get completely off their heads on what is a relatively low dose.

I take 70mg plus an extra couple of top up pills each day and all it does is keep me awake during the day and stops me snacking. I certainly don’t feel like partying.

Next you will be suggesting that all ADHD people have to do is make a list and get organised.