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 :)

but don’t we all do that?

Famous last words of a parent who not only doesn’t believe their child is ND but is very likely ND themselves….

Realistically it’s difficult. TikTok has a lot to answer for in causing what can only be described as a mass hysteria of needing a special diagnosis - ASD, adhd, gender dysphoria, personality disorder, look hard enough on TT and you’ll find someone who will list enough attributes to suit your personality to a diagnosis. However, judging by the description in the op there’s certainly some very real female ASD traits there. This is why it’s imperative to go to an actual medical professional. But be prepared for a long wait.

It is very very different for girls. The current wait in my area for an assessment via the NHS is 2 years.

I am taking my DD 13 next week to a private one (£2500) she displays many of the things you describe, mental health issues being the main focus and presentation in teenage girls.

For me, it will change very little at home in the way we treat her and manage her behaviours etc but my main focus is getting her the right support to do as well as she can do at school.

This.
If she wishes to go for an assessment, please support her. Why wouldn't you?

It's really down to her if she wants to have an assessment.
Girls tend to behave differently to boys and can learn to mask as children and how to copy others in their social behaviours.

My daughter was flagged age two bit being a girl they decided to watch and see instead as she has other disabilities.
Once she learnt to talk age 6 she would appear sociable going round the class talking to everyone but she would actually be telling everyone the exact same thing
She desperately wanted friends but had no real idea how so was taken advantage of and made fun of.

As a teen she found it harder to understand other girls, became isolated and angry. She had developed selective mutism, always quiet round strangers but in senior school unable to speak if there was a stranger anywhere around, started shutting down and picking at her skin.
She was diagnosed at 14 within an hour of salt, psych and pediatrician meeting her
They apologized for the 12 year wait and told me they were getting better at spotting autism in girls. In our area for adults there is now a five year wait list due to those missed as children

Scratching her face till it bled, and touching herself inappropriately in public until, I'm guessing, age 9-11?

Those things really stand out to me as suggestions that all is not ok.

Saying that, I do agree that a lack of life experience and self-isolation will be making things much harder for her. She may turn out to be a very different – and much happier – person by her late 20s, but she will need your support, and maybe professional support, to help her get there.

My mouth is a little agape because you've described what could so, so easily be an autistic young person! Daydreaming, swaying and rocking and bouncing, forgetting to eat, disorganisation, struggling to keep friends, overwhelm in "normal" situations (walking down the street) and focusing on individual objects and thoughts... omg. I think she's on the right track with her suspicions. A diagnosis could revolutionise her world, OP.

Thank you for being open to what everyone has said and well done on pushing ahead with listening to your daughter and pursuing this!

At school, and beyond.

I'm autistic and I work supporting autistic adults - support can be utterly essential later in life and a lot of people forget/don't think of this when they're immersed in the child/teenager/school life world (not assuming you're in this camp!). Support can be completely essential for work, benefits, healthcare, emergencies, etc. That's why seeking an assessment is always the right thing to do, in my opinion and experience. It's for life.

Everyone is on the spectrum somewhere. She may well have some stronger autistic tendencies. The question is, does it matter? Is it impairing her ability to function in the world?

As previous posters have pointed out, you do not know enough about autism to know whether or not your daughter has ASD. Only an experienced professional can assess that.
I have two daughters, both with ASD but they and their autistic traits could be more different. DD1: hugely socially anxious, has friends, and longs for friendships, but even finds interactions with close mates incredibly stressful. DD2: lots of friends and has no stress at all about social interactions because she doesn’t care whether people like her or not or whether she has friends or not. She has never initiated a friendship, just goes along with them.

DD1: sensory issues around food textures and favours bland food. DD2’s sensory issues mean she seeks out strong smells and tastes. The hotter a curry the better.

DD1: high achieving, hard working, huge fear of failure
DD2: Bright, but cannot organise or focus her thoughts except with her areas of special interest. Always happiest doing rather than learning.

from what you’ve said about your daughter she shows a lot of autistic traits, but only a formal assessment can put the jigsaw together and give her the answers she needs.

One of my friends is autistic. She comes across as very sociable but I know gets exhausted and overwhelmed with it all. Females present very differently to males so maybe read up on it all and arrange a doctor's appointment with her consent to start the assessment process.

Everyone is on the spectrum somewhere.

Bullshit, no they’re not 🙄

My dd was diagnosed as autistic last year when she was 18. I never suspected and it was her cardiologist who suggested it.

DH and her brother are also autistic but she is very different to them.
She has friends as does her brother, but they both prefer just a few close friends. DH does not have any friends but seems happy to just have family.

It was my dd's decision to get assessed and she seems happier since as she said she can now be free to be the person who she is without trying to fit in.

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?

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.

OP I just saw your update. Well done

I think the more important point here is that your dd is asking for your help. She is struggling - whether that's due to ASD, ADHD, depression is not clear. I think you should seek support.

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.

Oh great, more ableist BS with a bit of ‘and I know personally this is happening’ thrown in. Do you have any idea how difficult it is to qualify for ‘additional benefits’, especially for just adhd? How much paperwork, assessments, support structures go into applying? Never mind how harrowing it is to write out all of your children’s difficulties on paper. It has nothing to do with a diagnosis either - both my children were accepted for DLA before they had any formal diagnosis as it goes on what is seen as exceptional extra care needs for their age.

Also £400 for a private assessment? Where is this exactly because most places charge well over 1k at least…

I'm so glad you are making an appointment with your GP and getting the medical professionals involved. The worst part of knowing there is a problem is not knowing what the problem is. Once your DD is assessed, both of you will know what's the issue and how to approach it. ❤

The current suite of symptoms that doctors are trained on are oriented to white men. It excludes women and men of colour. The truth is that women and men of colour can often appear to be ‘normal with quirks’ even with moderate/severe autism diagnoses. Eg my uncle was recently diagnosed with severe autism (after his gc were also diagnosed) - he has always held down a job (since he was 16), but needed my aunt to do everything for him because he’d forget. She ran his baths for him, would set out his shirts, went to significant effort to give him his meals at work, would drive him, and took over 110% of his life admin and it was only recently when she passed away that my cousin insisted on him getting a diagnoses.

If you met him you’d only think he’s a scatty professor type. He’s well socialised, has a massive group of friends, and a smaller group of close friends he meets everyday, and you’d never believe he has a SEN. He’s so, so socialised - probably because as part of our culture we have extended family structures that support this.

Should point out that the things my aunt did for my uncle are considered normal and standard part of wifely (and then daughterly) duties for people born in the 50s. So there could be massive amounts of Indian men with autism who were never diagnosed because their wives / daughters ran their lives for them.

For my DDs, diagnosis was key to understanding why they were different and found somethings so hard. For DD2 in particular she loves having a shorthand to explain her ‘weirdness’ to people. She was particularly keen to avoid self-diagnosis. It’s really frowned upon in her peer group. Even when every professional she met from age 15 was suggesting we might want to seek a diagnosis, she never claimed ASD until she had the official sign-off.

You could be describing my daughter. Diagnosed ADHD at 17 then went on to pre-assessment screening for autism and scored off the charts. No-one who meets her for the first time would ever guess. I certainly didn't recognise it.

So much has come out since the diagnosis that I was previously not aware of. She was excellent at masking. A lot of her previous problems with anxiety, panic attacks and chronic migraines have now been put in to perspective though. I have learnt much about how autism may present and how girls in particular mask.

Don't dismiss her feelings. Much better to get a proper assessment.

@lionsandtigers21

Why are you and your daughter treating this issue as some sort of guessing game when you can actually have a diagnosis made?

There is no prize for being right or wrong. There is only the option to have a proper diagnosis made.

In Australia, psychologist services are not covered by Medicare. What GPs can do is offer 6 hours a year at half price under the Mental Health Act. But psychologist services are still a private paid consult.

One of the reasons I advocate for a referral from the GP is that there are too many psychologists offering services online, but doctors know which ones are the rights ones to refer patients to.

I completely agree!

So many parents don’t think there is anything different about their autistic child because they’re autistic themselves.

It was only when I grew up and started realising that my family wasn’t like other families did I start wondering why that is.

We know more about these things now so if a child starts presenting in a certain way we look for reasons why.

There are definitely multiple middle age and above people who are ND but were never diagnosed.

As the PP said everyone needs a label these days and I understand why someone may think their child is just going along with it but your DD obviously has a lot of things going on which could likely be some sort of ND.

I think some aspects can be revealed more over time - my oldest (identifies as non binary, assigned female at birth though) thinks they have ADHD or maybe autism and I feel a bit guilty I feel unsure because I wonder if some of it could be affectation because among their peers it's kind of a 'thing' to be non-neurotypical, and although they say they have bad social skills, they seem pretty good to me, but then I don't know how much they are masking. In some ways they seem more sensitive now to things like noisy crowds, but then they did used to be terrified of loud hand-dryers and have never been able to bear the sound of fireworks (which is frustrating to them as they'd like to watch them)

OTOH, their brother has a DX of ADHD, we've realised DH very likely has it and there's definitely some autism in my family - nephew diagnosed with it, my late aunt, now we think about it very likely autistic and probably my dad a bit and I'm not totally sure I'm not!

DC may show traits in a more typically female way - anxiety, being really organised in some respects but suprisingly careless in others, hyperfixation on certain things etc.

But basically I am waiting for finances to recover a bit from the summer so we can get them assessed privately - I just wish I had more clarity one what we are assessing for because it's not very clear whether it's austism, ADHD or both.