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 :)

@lionsandtigers21
What we did was the following

1. saw gp who submitted nhs referral.
2. provided detailed info akin to a report when nhs service required more info to accept onto wait list.
3. found a private provider to carry out assessment; made sure carried out in line with NICE guidelines and acceptable to nhs service (they actually outsourced to this provider anyway for nhs assessments so we knew there would be no issue).
4. Once assessment carried out and diagnosis confirmed the provider sent it through to nhs dept to be ratified. Then we received nhs welcome to the service letter and school accepted diagnosis (started the ball rolling).
5. Applied for DLA as soon as we had the diagnosis confirmed and report in hand. Your daughter would be PIP I think (important as access to many accommodations relies on having DLA/PIP paperwork).

There is also “right to choose” which can reduce wait times and might be a good option. I don’t know enough about it though as we didn’t use it. Our DC would have formally been aspergers but classed as autism now.

Assessment process for a child

1. session with child for various psychological assessments
2. parental interview
3. school evaluation (either observing or getting teacher to fill in a questionnaire, usually the latter)
4. physiological medical assessment
5. final meeting to impart results

Assessment process for adult

1. 2 in-depth interviews of about 3hrs each with different assessors.
2. interview with someone close to the person, usually a spouse or parent.
3. final meeting to impart results.

Heh...yeah, I've had this brain-dead stuff too.

"You're not autistic, you've just got yourself a label because it's fashionable. Look, you just have to learn to be more sociable...it's not hard, everybody does it. Instead of being lazy and claiming autism, just put some effort in."

Like...herculean effort is exactly what I've been putting in for 45 years. I'd very much rather be able to stop doing that now.

My DD is Autistic and has always had friends. It's quite common for girls especially who mask well to fit in socially till they're around 12 when social relationships are getting more complex and then they can't cope. Some can manage masking for longer. Girls on average are diagnosed later then boys. Based on what's written here I think it's possible she's Autistic. You need to listen to her and help her pursue this as it's obviously important to her. It's not about whose right, it's about being their for your child. A specialist might tell her she's wrong, but even if that's the case it will matter to her that you listened and you helped her to get answers.

ADHD myself with ADHD strongly running in the family. (Speaking of which, we read crazy fast plus often hyperfocus on reading, which I've seen in inattentive ADHD just as much as the other stereotype of not really being able to read books! No one size fits all.)

I'd say the most helpful thing to me after getting diagnosed was learning better coping mechanisms through lots of research. This can take the form of books – classic ones that shaped the modern more accepting / positive understanding of ADHD are by Edward Hallowell etc – but also Youtube videos, podcasts, online forums and groups, etc.

Coping mechanisms aren't really a dirty word – much of the online ADHD community is built on sharing coping mechanisms, tips, tricks, etc. Our brains work differently (in both good and bad ways imo but I know people disagree on that, so I'll leave it at "work differently") and it's okay to find ways to work with that.

However, the main benefits of a diagnosis are medication if you take that, feelings of certainty if you need that, equality provisions at school, and SEN support at school. On the latter two, it can be helpful to do a bit of research on your own anyway to understand yourself and what you need/would like better, and then ask/advocate for those accommodations/coping mechanisms.

It looks like you've already gotten some good information on the diagnosis process, it's great you're taking this all on board. I'd copy your posts into a word type document and start adding anything else that comes to mind from past and present. You'll be asked a lot of very detailed questions about your daughter's development if you get an assessment done

In you second post, the movement that's like my youngest who is Autistic. The sensory reactions to sound and busy places is like my middle boy, also Autistic. Your third post could be my DD. I have three Autistic kids and they are all different from each other and present in very different ways.

DD also has low self esteem. She's felt like she was different to her friends from a young age and really struggled with why she felt that. We had several discussions while she was waiting to get assessed about the what if she wasn't Autistic and I always said then we'd ask the asessor where to go from there and we would find the answers she needed. Getting a diagnosis was a relief for DD, she could put a name on the difference she sensed and not she didn't have to wonder why she felt how she felt anymore. It really helped her to have an answer.

I find your way of looking at things most unusual.

Your daughter is clearly struggling and there are a number of examples you have provided which must be difficult for her to manage & deal with. The inappropriate touching alone should be a concern.

Whether she has ASD or depression or something else, your daughter is struggling, she needs your support and that of medical professionals in some capacity. Helping her should be the focus not trying to second guess whether she is right or wrong.

Sounds exactly like my DD who is 16 and was diagnosed age 11 with ASD and ADHD. Psychiatrist said she was only borderline for both on paper and that the diagnostic criteria is outdated, especially for girls. I was very confused at first, because I have a stereotypically autistic brother and she was nothing like him at all.

She had no need for routine, no sensory issues (except maybe sensory seeking), no food issues, didn't have what I thought of as obsessive interests (but psychiatrist said her huge interest in My Little Pony, anime and Pokémon was significant).

Issues were she would have regular meltdowns, which were basically extreme tantrums she couldn't regulate from, she would have meltdowns every day when I picked her up from school, when we had to leave the house (but she was fine when we arrived somewhere) when we had to leave somewhere, getting in the bath then getting out the bath etc I didn't know the words at the time but her issue was with transitions. She would wander off in busy places, wasn't at all risk averse. She was obsessed with looking for shiny things/rocks/shells/trinkets.

She wasn't shy, and that was another thing I thought meant she couldn't be autistic, but she was inappropriately confident around strangers, and no topic was out of bounds for her. Often being very complimentary to a random person but equally often making rude comments. She had no stranger awareness. She had no fears, no embarrassment, no sense of guilt. She pretended to be a dog/cat/dinosaur every day. She had a delayed circadian rhythm.

As a baby I could put her down in a new busy parent and baby group and walk out and she wouldn't look for me or cry. I could hand her to strangers and the same. It was hard to get her to smile but not impossible. She wouldn't sit on my knee for a cuddle, always wanting to be put down and on the go.

My daughter developed a social filter around age 12, and gradually became more inhibited and introverted. She has claimed to have friends through secondary school, but she hasn't met up with any since she finished school in June after GCSE's, and would have been happy to spend the rest of her life in her bedroom never to see daylight again. She forgets to eat, has no sense of thirst and has to be reminded to drink, has to be instructed to wash, can't tidy her room without help, has to be woken up in the mornings, can't pack on her own for a weekend away, can't take a bus without someone with her, is quick to lose her temper. She likes gaming, digital art (been drawing the same animal type characters she makes up for about 7 years), cosplay, alt fashion. These interests are quite typical for women with autism. All of her friends are neurodiverse.

Your daughter probably is picking things up from Tiktok and my money is on Discord, especially with the talk about day dreaming, (she's probably talking to my daughter about that who talks about this all the time.) And yes, these type of forums absolutely can induce some sort of contagion (especially with trans issues/self harm/suicide ideation, tics) but also, I don't believe neurotypical teenagers are going to be drawn into these type of servers. So if they are. being influenced into obsessing over how 'other' they are by the internet, and not makeup/fashion/celebrities/parties, then chances are they are neurodiverse, even if some of the things they claim are lifelong issues aren't really true.

I myself have severe ADHD and a few traits of ASD, and I do agree with the theory that ADHD is a subset of ASD.

However, the main benefits of a diagnosis are medication if you take that, feelings of certainty if you need that, equality provisions at school, and SEN support at school.

Just to add to this - having a diagnosis facilitates support at third level education too (25% extra time, flexibility of deadlines etc, disabled students allowance, special support grant, about £1500 in equipment).

It also provides a route to accommodations at work and if she is ever in hospital. Not to mention disability discrimination protection. Without the diagnosis there is none of that.

If she has problems with daily functioning and requires support look into PIP/DLA as this may give her 3000-5000 a year income and facilitate a free carer ticket to attend events, plus support at airports, no more queues, other adaptations wherever she goes.

It’s really very substantial in financial terms and life changing in how it makes things easier.

However, the main benefits of a diagnosis are medication...

there is no medication for ASD!

However, the main benefits of a diagnosis are medication

Apart from the very significant financial support that is available, in my experience the main benefit of diagnosis is finally understanding oneself better and therefore (hopefully) being able to avoid/mitigate further trauma and burnout.

This is really important. I had a vague suspicion I had ADHD for years before I went for diagnosis. When I was assessed what seemed 'normal' to me was then very obviously present in DC AND my family of birth.

This.

I am not medicated, GP won't do shared care & I'm not going to bother my cmht.

But just adding in things that help, taking away things that don't & just knowing is so helpful.

Plus there are physical issues that cause irritation & discomfort that are more prevalent in nd people.

However, the main benefits of a diagnosis are medication

No. Here are some of the benefits.

My daughter gets Pip
Schools/universities have to make adjustments
We and she can read up to understand and support her.
In the never ending fight for an EHCp we have concrete evidence.
When she went into burnout we knew what was happening.

To add; someone said, "How will the diagnosis help you. I was asked this with my age as I'm older now and a nana.

Even at my later age, the relied is immense. It makes sense of things in life that didn't make sense. It brought me peace of mind..

Having had a difficult childhood recreated in adulthood and doing a lot of various therapies, I still found there were things I couldn't make sense of. Behaviours that didn't fit in.

The diagnosis has helped me immensely as it helps me know what I'm working with

Yes to all of the sensible answers above, but also...a huge part of the benefit of a diagnosis is simply giving yourself permission to exist, as opposed to considering yourself a defective aberration in every waking moment.

I realise that sounds dramatic, but that's the nature of reality for a huge number of undiagnosed autistic people - just about everything we encounter in the world feels like it's easier for everybody else on the planet, and therefore there's something crap about us that we need to keep others from noticing (hence...masking).

Just not having that feeling - through having an actual explanation and knowing that we're not the only one - is immensely liberating.

I'm not the person you're replying to, but..... £360 for an ADHD assessment from Psychiatry UK and £530 from ADHD online I think it's called.

Did you miss the panaormana documentary and subsequent media discussions recently where people were getting diagnosed with ADHD fron these private clincis, extremely unreliable assessments/diagnoses.

Not all people with ADHD rely on medication, some do learn techniques as a non pharmalogical intervention for their ADHD.

I was replying to a post about ADHD. That said, there's also medication for many conditions comorbid with ASD, should one want/need that.

OP, if you tell us whereabouts you are in the UK we might be able to suggest good routes for assessment. If it helps, The Lorna Wing Centre in London is excellent at diagnosing girls and Dr Gloria Dura Vila is outstanding at diagnosing ASD with PDA. Some of the assessments can take place remotely.

Help her to request an assessment.

But there is undoubtedly a 'trend' in young people to self-identity as having ASC/ADHD or mental health problems. Same as there is for identifying as trans or non-binary.

It's heavily driven by SM, YouTube and TikTok and the misinformation that is often spread.

But she's clearly struggling with something and should be helped to explore that via assessment.

I think you are being very unreasonable and don't really understand autism. Not all autistic people have big sensory issues

Some of the things you have described here from her childhood do sound like autistic traits. Your daughter is obviously learning about autism and recognising some of that in herself. It must be incredibly frustrating for her for her Mum to be insisting on saying it's not a possibility.

Encourage her to seek formal diagnosis. You will expect you to fill out a form about her childhood. Make sure you fill it in honestly with no "there is no way my kid is autistic" bias. See what the professionals think.

Autistic people usually know they are autistic, and the things you describe don't mean she isn't. Try and read up a bit on autism - particularly on social media and so on, and it's a very broad spectrum and often people who are autistic really need support from loved ones as life can be very stressful.

Check out OP's reply at the bottom of page 4 - it will change your opinion, I think.

I had no idea I was autistic. I just knew I was different. But I guess when I was growing up in the 1980s barely any girls were diagnosed.

I think you should listen to her.
She sounds autistic from that list, although what you seem to think is happening is she's read up on autism and is selecting memories to fit that diagnosis?

Either way, if the label helps her understand herself and connect with people like herself, what's the problem? I wouldn't argue with how she self identifies. If support her if she feels she needs a formal diagnosis but she might be fine without one. What will help her now is feeling listened to .

I think all of those things can be totally normal. Most people feel those things, everybody masks, many people stim. It's not just having those things which makes someone autistic.

A lot of teens (and adults who should know better) are diagnosing themselves at the moment, it seems to come from online sources. The fact that she has landed on both those trendy self-diagnoses is suggestive, to me.

I think some of it can be a kind of status seeking, but also many teens now are very keen to find some kind of diagnosis to explain all of the things they struggle with at times. I'm not sure why, it doesn't seem enough to know that many of these things are just part of being human.