Refused an assessment ASD and ADHD

[Mumofthebrood]

My daughter is 9, masks very well hut is burning out. She has been high needs since birth, Always been sensitive to thing like labels, clothes, socks, shoes on the right way, lining things up, toys being put in the right place, lines, etc. She's also highly intelligent. She taught herself to read at nursery, she creates maths problems for herself, etc. She also has epic meltdowns at home and tells me she struggles to be "at school child" and it males her so tired. At home , she meltdowns daily for hours at a time. She cannot cope with much. She fixated on Minecraft constantly. Her behaviour is getting worse and her mental health is plummeting.
I got a letter through this morning saying unless she refuses school, her education suffers or her teachers notice a change, the nothing I can do. Think is, her assistant head agrees... she'd never miss school or have a meltdown at school because she's high functioning abd incredibly intelligent. She masks so well. Too well!.
What can i do?
Sorry for all the typos, I have a poorly baby on me xx

The
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It's pretty simple - you don't see it because you fundamentally don't understand the insanely painful journey of late-diagnosed or undiagnosed autistic people, and how much it makes somebody spiral when they're trying to come to terms with it enough to seek a diagnosis and somebody like you comes along and gaslights them.

You absolutely don't understand what masking is, and you think that the small part of their lives that you can see is representative of their entire lives, and you don't see the strain they're under which only shows when they're alone.

Hell, you don't even seem to understand that autism is not a mental illness. Wow.

You don't see why anybody would be offended because you're so attached to your interpretation that you can't understand why those of us with a diagnosis - who've been through that long, painful journey - would empathise with them. It's ironic, really, since the NT world seems to believe we're the ones who lack empathy.

You don't see, because you fundamentally fail to understand that every single late-diagnosed autistic has been through all of this, and had to put up with people like you telling them they're imagining it all, for their entire lives.

You've made some bold claims there. I never once said autism is a mental health illness. I listed it as something these people have never had, as in they've never been struggling with life and been told its due to anxiety etc. Because they haven't struggled.

Don't tell me what I don't know. I know about ASD/ADHD. I know about how it presents differently in different people. I know about masking. I've been caring for and working with people on the spectrum for over 20 years.

Ask somebody with genuine, life impacting OCD, how they feel when every man and his dog claims "My OCD can't cope" because they like their pictures hung in a straight line or a clean house. It's the same as people who are always late claiming to have ADHD. Or somebody who likes a routine and is introverted claiming to be autistic. It does happen, I see and hear it happening.

If you have had genuine, life impacting struggles, why take offence at me pointing out that there are adults seeking diagnosis or claiming to have these conditions, because they've been influenced by social media and they haven't struggled in life?

You don’t not know what is going on in people’s heads or past. Your arrogance is astounding.

Fiona just doesn't get it. Her(?) tunnel vision means in her world only those who struggle in ways she notices can be ND, the whole rest of the world and their dog who self-diagnosed because of TikTok or however else are definitely NT - because Fiona diagnosed them. Watch out, world, who needs psychiatrists when we have self-proclaimed ND specialists!

I wouldn’t want to speculate on whether a specific individual is ND or not as I have no idea. But I think we need to acknowledge that the number of children either diagnosed with ASD/ADHD or on the pathway has absolutely skyrocketed, and that is inevitably going to lead to very long wait times. I have a reception child in a class of 26, I have spoken to maybe 7 or 8 other parents so far and 3 of them have disclosed their child has autism. I’m also part of a local mums Facebook group and it would be no exaggeration to say probably a quarter of posts are regarding a ND child or a child on the pathway.

I think there needs to be a public enquiry into why there has been this sudden explosion in ND children as the professionals are pretty much in agreement it’s not just down to better diagnostics although this will account for some of it. At the rate we are going the effect on the workforce in future will be enormous, whether that’s because there will be so many adjustments needed or because many people will be unable to work if their ND condition prevents them from doing so.

But I expect the can will be kicked down the road until it is too late like with everything else under this government. OP I wish you well in trying to get your daughter help.

Ok, everyone who watches ADHD/ASD on social media and thinks "That's me that is" is autistic and should definitely go and join the waiting list for diagnosis.
They can start a club with the 'Everyone is a bit autistic' people.
Meanwhile I'll continue to care and advocate for the adults and children, who actually need support and not just because they never know what to say at parties and are always losing their keys.

A public inquiry into what exactly?

The numbers are skyrocketing because:

1. There was a pandemic and there's a 2-year backlog.
2. Pandemic has also highlighted ND in many more adults and children because of altered conditions (albeit for some it was in fact a blessing and a more peaceful time, everyone is different).
3. There is an increasingly better awareness of the symptoms and ND people's needs, and rightly so.
4. GP services are crumbling and secondary and tertiary MH care services are crumbling too which results in extremely long waiting lists - this is because there are less and less GPs, less and less full time GPs and less MH specialists in the country. Ask Boris Johnson why he thought Brexit would help since all it's done is driving EU doctors and specialist nurses out of this country at a time they are very much needed.
5. Other comorbidities have now been linked with ND due to further and better research and as a result it is sometimes leading to an underlying diagnosis backwards.
6. As I said before, ND has been running significantly underdiagnosed in this country and this is changing now. Another backlog.

Shall I keep going? Cause there's a few more? No need to spend millions on a public inquiry into something you could educate yourself on and arrive at your own fact-based conclusions.

You come across absolutely terrible, Fiona, I'd want anyone with ND to stay away from people with your attitude.

OK, I'm going to put it as plainly as I can: the overwhelming majority of late-diagnosed autistic people started the path to diagnosis one of two ways:

1 - Their child was diagnosed, and the assessor said, "While we're here...."

2 - Diagnosis-by-algorithm - videos and posts repeatedly thrown at them by social media because they showed patterns which put them in the same bucket as other autistic people

That is why your assertion that people who've "been influenced by social media" are just hopping on the bandwagon is wrong.

And, as has already been demonstrated in this thread...you're displaying an absolutely staggering sense of ignorance and self-importance in believing you know whether these "people you know" are struggling and falling apart in their own time just to show you a mask of normality - as if you're that special kind of individual who can see through the masks of people who've been fooling the entire rest of the population for decades. That's why they often eventually get diagnosed late in life. The clue's in the description.

As for "I've been caring for and working with people on the spectrum for over 20 years"...yeah, so have the people who've been practising ABA for decades. They haven't got a clue either.

That might be a struggle considering I have an autistic son living in my house.
@ntmdino I know them well enough, thanks. One of them has been my best friend for over 30 years.
I'll spell it out for you, shall I? Not everyone is the same as you. You don't know every person behind a keyboard saying "I'm autistic/have ADHD" You are are yourself displaying a 'staggering sense of ignorance' by insisting that these things aren't happening. People can't just identify as autistic/ADHD/OCD and yet they are. They can call themselves 'neuro spicy' or whatever new term they like.

Wow. Just wow. Say no more.

Ah yes, the drip-feed of "Oh, but I have <x> person, so I know all about it...". I've probably seen that as many times as you claim to have seen people faking autism.

I don't insist that these things aren't happening. I'm saying that the incidence of it is negligible compared to the number of people who end up actually diagnosed through the same journey, and so I'm not so callous as to try to gaslight them by claiming I know more about their inner lives than they do, the way you are.

Something that may surprise you: even my school friends who I'm still in touch with over the last 30-40 years had absolutely no clue. Like you, they thought I'd breezed through life with no struggles at all, succeeding in everything I tried my hand at. The same is true of the vast majority of late-diagnosed autistics.

In fact, the only ones who had any inkling were my other half and my mother (who actually knew for a fact, because it runs very strongly in her side of the family, and has been hidden for generations).

So you see why the whole "One of them has been my best friend for over 30 years" thing lends absolutely no authority in this conversation; the fact that you think it so does exactly the opposite.

I said on pages 2, 5 and 7 that I have an autistic son, so the exact opposite of a drip feed. Again, you are attempting to speak with complete authority about situations in which you aren't seeing the whole picture.

Again, you presume that I don't know my friend well enough. That she's a casual acquaintance from school, who's masked her difficulties. We've had numerous holidays together, we've shared an apartment. We talk and/or see each other everyday. I have another friend who will openly admit to never having had any significant problems or needing support, but said that they are 'reflecting on their lives and realising that they are probably autistic' and are now holding themselves up as the authority on autism, as an autistic person themselves (who hasn't been diagnosed) I don't need to go in to anymore detail on here, than to say I know people who are claiming to have ADHD/ASD/OCD because they've spent too much time being influenced by social media videos.

You clearly aren't able to see beyond your own situation. Don't presume to know everything about the subject.

So Fiona knows 2 people ergo people with autism who are verbal dont deserve their diagnosis and are all TikTok watchers.🙄

People think they have all manner of things from SM, it makes zero difference to getting access to services. If I think I have cancer from watching SM I am not going to hoover up treatment or support for it without conclusive evidence. The route to an autism diagnosis is long, arduous and invasive. Even after getting a diagnosis there is very little that you receive on the back of it.

Your continuous attack on any ND person who doesn’t present like your son is hugely damaging to a vulnerable and struggling section of society.

If you knew me, you might think that I would be one of those people who says 'oh I always felt different' but was actually 'fine through life'. I'm married, I have a degree, etc.

~But I was referred for development checks at 3 because I spoke unintelligibly. Turned out I was super bright with the IQ of an 8 year old.
~I was precise and pedantic with language as soon as I could speak.
~I was referred to a psychologist when I was 7 because I had 'low self esteem'
~I was 'different' throughout school (I used to teach other kids to read at 7; I wasn't allowed to take times tables tests because I just got 100% all the time; I wasn't allowed to do maths and instead had to help paint the big model in the classroom because I was too far ahead).
~I was bullied by my peers.
The list goes on.

But ASD wasn't a thing for high achieving girls back when I was a kid.

There will always be people who self diagnose lots of different conditions. Some of them will actually have the condition and others won't. I will admit I have done this myself. 3 years ago, Camhs said to me "ds2 is definitely autistic but we can't diagnose him". I've been saying he is autistic since then. He's on the waiting list to be assessed but it will be July next year when he has his first appointment and probably at least another 6 months before he has a diagnosis. That's if he doesn't age out of paediatric services while we are waiting and has to join the back of the queue for an adult autism assessment.

GP receptionists will tell patients not to bother the GP for viral infections. So there are people self diagnosing with tonsilitus or the flu when they actually have a sore throat or a cold, although of course some people will actually have tonsilitus or the flu. People post on here about their fairly minor illnesses and say they aren't sure where to go for help or that the GP won't see them. Someone will inevitably post that they should go straight to a and e because it might be sepsis.

The only way of stopping it is to assess all of them, but then the waiting lists will be even longer.

Ah yes, the drip-feed of "Oh, but I have <x> person, so I know all about it...". I've probably seen that as many times as you claim to have seen people faking autism. most people don’t declare their experience and nor should they have to. If someone’s stance is your opinion is what it is because you are ignorant and you aren’t, what are you supposed to do? Personally I avoid stating too much personal information and I think most people are the same.

It's like pulling teeth this, the level of twisting words is another level! I haven't once said that anyone who is verbal doesn't deserve their diagnosis. My son is verbal!! Nor have I said that everyone seeking a late diagnosis only does it because of Tiktok. It happens. That's it.

But tbf it's not really like showing symptoms of cancer. Lots of people show symptoms that are common to ADHD but it's not a disorder unless they're impacted severely. I'm extremely/abnormally obsessive about certain things yet nowhere close to full blown OCD, for example.

The problem is that people are watching TikTok videos and thinking "oh, I procrastinate and can be forgetful so I'll go for a diagnosis". I recently read a study where ADHD experts reviewed 100 TikTok videos and classed just over half as 'misleading', roughly a quarter as 'subjective' and found about only 25% to be remotely accurate.

I'm all for people getting the help they need and it shouldn't be a competition, but some of the posts I read really grind my gears. There was an OP on here living in a European country who was saying she'd had a private diagnosis after specifically seeking out a specialist 'renowned for diagnosing professional women'.

She was very senior in her job and said her work 'was always praised by colleagues'. I was waiting for the bit about how she was masking and felt miserable/struggled outside of work but she went on to say that 'not all ADHD sufferers struggled' and that she'd never in her life experienced either anxiety or depression. I just couldn't see the 'disorder' bit tbh.

She was saying it had helped calm her mind and help her complete tasks quicker etc but I'm seriously doubtful she'd have met the NHS criteria of 'significant difficulties in at least two areas of daily life'. She was smashing it at work and was perfectly content in her own mind - never experienced any anxiety/self doubt. Of course, she wasn't on the NHS but there were loads of replies from posters saying they sounded like her and were going to look into it.

I just don't think people like this should be preventing people like OP's daughter from getting help - people that are suffering significantly. It feels sometimes like a lot of people see ADHD meds as a lifestyle hack to be more efficient rather than treatment for a condition that can seriously affect your quality of life.

This is what you said, quotes:

What I'm saying is that people who have lived their entire lives without struggling significantly, then seeking diagnosis for ADHD/ASD, because of watching these videos etc, aren't helping people with high needs.

I'm not getting any information from 'the rags' I know enough people like this is in life.

I personally know 3 people who fall into this category

Not only you're generalising and speaking for others when you shouldn't have, but now you're also denying your own words.

Let me lay it out so you get it:

A vast majority of people who "watch these videos" on SM would have likely wondered for a long time what's wrong with them. Many would have googled a number of their symptoms over time and as a result through algorithms, eventually come across ND-relevant content. For some of them it will be a light bulb moment. Others will think (it's an incorrect term, but I'm writing this using your style so it lands for you where it needs to) that they are 'a bit ADHD' or 'a bit autistic' or they are 'a bit OCD' (although that's technically a MH issue). These won't bother with doing anything about this and they'll crack on. The final group will be borderline. They'll display quite a few symptoms and they'll be wondering am I - aren't I, maybe I am. In reality they may be ND or not, or they may have other MH issues which may present as say ADHD, for example Generalised Anxiety Disorder. Maybe they're perfectly NT, just quirky. These people may end up on waiting lists if they are referred to by their GP. Some will go through ND assessments if they have the stamina to go through the process and if they feel strong enough that they might be ND. Others will be assessed in respect of other conditions. Finally there will be a group that does sweet fuck all about it. That's the reality.

So now take a step back and think for yourself, how very small the group is who is actually undergoing assessments or taking up precious space in the queue when they do not need to. It's tiny. And the advantage of increasing knowledge of the symptoms is enormous.

Let me tell you straight on my own example why your posts are extremely offensive.

My DH has inattentive ADHD, diagnosed past 40 yo. He never watched TikTok. I did. Well, Instagram, precisely. I'm NT. I then read a lot of ADDitude magazine. Then New Scientist. Mumsnet. Spoke to ADHD-diagnosed friends. Why? Because I knew he wasn't standard. I Googled a combination of his symptoms and it was indeed that lightbulb moment when everything fell into place.

To people like you, DH is a classic example of an adult who doesn't struggle and shouldn't be taking up precious resources. He is in a senior role. He went to university. He has friends. What's not to like?

But to me, he's a man who survived in life and got to where he is now largely thanks to me. I carried the entire burden of everything, all things adult, for him and for me, and now DC in our lives, endlessly wondering why what was so simple to me is so bloody hard for him. I tried speaking to him, organising him, arguing, crying in desperation, repeating, blaming myself, the whole lot. I paid the price for my plate being overfilled by having severe anxiety which was then made worse by some bad unrelated experiences. I couldn't change him and I couldn't understand why. He was saying how he doesn't intend to be difficult and he's sorry. I thought he was a being a dick on purpose.

The lightbulb moment changed absolutely everything. I understood why he was the way he was. He needed convincing and like you he didn't believe in SM videos at first. So I sent him everything else. He eventually had a formal diagnosis, inattentive ADHD. Met absolutely all diagnostic criteria and there was not a shadow of any doubt. I can't say I was surprised. Relieved, yes. Medication has helped him enormously and I am coming back to normal life and managing my anxiety better slowly and gradually because I finally can afford to do it, time-wise. I finally don't feel like I have to manage absolutely everything. He is perfectly capable, but he struggled in ways you could never imagine. I live with him and honestly, when he sometimes tries to explain his ways of thinking, I am still baffled and I would just never think in that way.

Now, I'm not writing this to make all ND people on here feel like shit. It's not a post saying you ruin your partners' lives. But I have to be honest, if I hadn't understood this is how his brain is wired, if I hadn't found out about it and we both hadn't put mechanism and methods in place to manage things together, I would have had a complete breakdown and/or I'd have left.

But to people like you everything would have seemed hunky-dorey.

So don't come on here spouting more of this nonsense because you're offending ND and NT people who care alike.

And if this essay wasn't enough, for full disclosure I have some hyperactive ADHD and some autistic traits (and am positive my DF is undiagnosed autistic). I still think I'm NT and I'm not blocking the queues because in my view it is part of my personality, rather than ND. But I 100% considered if I need to be referred because my GAD was masking as ADHD. Luckily, I was diagnosed correctly through MH services and got help which was extremely needed, but again you'd never guess that from the outside. Never judge a book by its cover.

@PurplePansy05 - "To people like you, DH is a classic example of an adult who doesn't struggle and shouldn't be taking up precious resources. He is in a senior role. He went to university. He has friends. What's not to like?

But to me, he's a man who survived in life and got to where he is now largely thanks to me. I carried the entire burden of everything, all things adult, for him and for me, and now DC in our lives, endlessly wondering why what was so simple to me is so bloody hard for him. I tried speaking to him, organising him, arguing, crying in desperation, repeating, blaming myself, the whole lot. I paid the price for my plate being overfilled by having severe anxiety which was then made worse by some bad unrelated experiences. I couldn't change him and I couldn't understand why. He was saying how he doesn't intend to be difficult and he's sorry. I thought he was a being a dick on purpose."

Yes. A thousand times yes.

My other half has ADHD and I'm autistic, neither of us diagnosed when we were young. People have often joked that between us we make a whole person, but it's actually far truer than they know. We're both incredibly lucky to have found each other, because we can't imagine finding someone else who'd put up with the adaptations we've had to make for each other.

Sounds like a relative fairy tale, but...the reality is that most ND people who look like they have it together can only sustain that by leaning heavily on the other people in their lives; the more typical they seem, the more of that is borne by their loved ones. It all comes with a cost.

Apologies if I sounded a bit harsh in my previous post. There are no doubt plenty of people 'getting by' and masking their symptoms who are mentally not in such a good place. However, there also seem to be quite a few that are managing just fine and see it as some kind of journey of self discovery.

I'm defo in the former camp and frustrated tbh that I can't get the treatment I need due to the system being hopelessly clogged up.

I was diagnosed in late primary school after being removed from mainstream education and temporarily put in a school for children with behavioural problems. Ritalin helped me get through my GCSEs and start my A Levels but I stopped taking it as I didn't really like how it made me feel, despite not really suffering any of the usual side effects. Also, didn't like the eightfold increase in Parkinsons risk after seeing one of my relatives with it.

I was already dabbling in recreational drugs by my late teens as is so common with ADHD sufferers and basically replaced Ritalin with cannabis, which I vaped/consumed via edibles for close to a decade - it's actually something that can be legally prescribed in the UK as a second line treatment and is recognised by the NHS although they don't prescribe it for ADHD themselves, only epilepsy.

I quit office work a few years back as I just couldn't hack it and threw away almost ten years experience as well as pretty much invalidating my degree as it's not relevant to my current job.

I'm now in a technical/operational role and it suits me fine but the issue is that I get drug tested. As it's a swab test it only shows use in last 24-48hrs, so Monday morning is a risk but generally I've got away with it. However, I'm now on a shift pattern that includes weekends so I had to stop around a year ago. It was a nightmare tbh.

I tried to get back on Ritalin but I'm still waiting a year later as the system is so full, despite already having a diagnosis and proof of tolerance to Ritalin. A few months ago I just gave up and started vaping weed again as I just couldn't switch my brain off. I found myself always wanting to eat more sugary stuff, vape more nicotine, watch another episode, have another drink, read another chapter. Just basically anything that gave that dopamine stimulation, and I could never seem to switch off and sleep. I was operating heavy plant machinery after days and days of four hours sleep.

So now I'm vaping weed again and it's calmed my mind, helped me sleep, but I'm one drug test away from losing my job, and one day it will surely happen. If it does happen I'll be finished in this industry as I'll be banned from all our sites, which is sort of like an IT tech being banned from using Microsoft products or a nurse banned from the NHS.

So, whilst I agree it's not a competition, I still find it hard reading all these posts from successful senior executives with 2-3 kids who claim to be happy in life but just looking for 'the missing piece'. I struggled with a mid level management job, despite easily being smart enough in theory, and can't even imagine having kids at this point.

I was just going to go private as I've already got a diagnosis on the NHS and previous treatment history, meaning they'd likely honour it after restarting privately, but my previous employer recently went bump owing me £7k in wages, so only way it's happening is to cash in my ISA and lose all the interest.

So it does grate at times to think of all the successful, financially comfortable, senior execs in front of me who admit they're doing OK but 'want an explanation for how their mind works' etc. I just want some fucking meds before the inevitable day I lose my career, at which point I'll be royally fucked as there's no way I'd ever go back to an office job.

I know I'm probs being a bit unreasonable but it's hard not to get irked by all the TikTok shit etc. I'd just buy some Ritalin off the black market tomorrow but it shows as amphetamine on drug tests so I need the proper prescription to cover my back.

But people are being influenced by social media and jumping on the band wagon. It's happening. I've seen it. I live with it. It's disingenuous to pretend it's not happening.

@SharSharBinks I think you're being unfair. Many, as you refer to them, "senior executives who want to understand how their mind works" have private health insurance which they can use, or they can pay privately and they don't necessarily add to NHS lists. I spoke about the reasons why the lists are long in one of the earlier posts, there's a multitude of factors there.

I understand your frustrations, but I'll put it bluntly, the NHS is for all who need it and the senior executives have an equal right to use it, just as you do. Strictly speaking they pay a lot more into the healthcare system in taxes too. So however you want to look at it, yes, they can be on the lists and so can you.

It's not their fault you are in a difficult financial situation because of your current employer and that you seemingly go on and off Ritalin which doesn't help in terms of the number of appointments you need and puts you at the bottom of the list constantly. Some consistency would probably work better for you, perhaps you need different medication and overall management in place.

It's also offensive what you said about having kids. DH's ADHD spiralled after having DS massively, so no, just because senior executives have children really doesn't necessarilt make them any 'less ADHD' and deserving help than you. You cannot say that, you just cannot speak for others. I look after 90% of matters related to DS. DH is fantastic with him, but he's a great dad for the here and now, not a parent thinking ahead whatsoever. I wouldn't say that's coping well at all.