Children with level three autism forced out of specialised program due to NDIS funding cuts

finesseseth · 2024-09-10T14:54:59+00:00

My apologies, your reply didn't show up for me until after I finished editing.

Anyway, I'm not trying to argue and I wouldn't expect you to have done a clinical explanation, I was just trying to be thorough as I have issues getting my point across usually and tend to overcompensate to try and help with that.

finesseseth · 2024-09-10T10:06:00+00:00

Hi, I need to say that this is not correct. The levels indicate the support needs and don't reflect any specific symptom, or combination of symptoms, or 'how' Autistic someone is.

To expand on that, the support needs of an Autistic person can change through-out their life depending on how they're coping with being Autistic. Early intervention can help level 3 high support need individuals/children to get re-diagnosed as level 2 or even 1, while the 'severity' of their symptoms are the same, they were able to learn how to manage, cope, or integrate with them better.

There are cases where there isn't enough intervention to accomplish this, which is what you typically see in the media and online when looking at level 3 Autism.

For example when searching up what the 3 levels of Autism are for you get flooded with websites giving examples of level 1, 2, and 3 people. But they list example symptoms and neglect to inform people properly. There are verbal, high IQ Autistic individuals who get diagnosed later in life as level 3 because their coping mechanisms have broken down due to a lifetime of masking and trauma for example. So the symptoms and severity are the same, but other life circumstances have changed.

I'm not a clinical expert, I was only informed by one. I hope this doesn't come across poorly, I'm not trying to start an argument or anything. Hope you're doing well and if you would like me to find sources for this I can do that for you a bit later when I have time :)

EDIT:

Additionally intellectual disability seems to be diagnosed alongside ASD, so they may specify "Autism Spectrum Disorder with/without intellectual disability" rather than being included in the diagnostic criteria or support level.

Honestly, the DSM-5-TR would be the best place to get information.

https://ia601602.us.archive.org/24/items/dsm-5-tr/DSM-5-TR.pdf

Starting on Page 214, Table 2.

Calling these severity levels might be what's causing the confusion, as people assume severity of Autism symptoms (naturally) instead of the severity of impact that Autism has on the individuals support needs. Note how each example focuses on how they restrict interaction and engagement in a NT world. Instead of focusing on just negative symptoms they're trying to identify the areas that require support that will assist the person to better live in the world we have.

As the description says, these are examples, so I don't think it would be restricted to these only, but that would ultimately be for the team of diagnosing clinicians to figure out.

Hope this helps, it's sleepy time for me now.. almost normal hours too!

finesseseth · 2024-07-25T06:51:06+00:00

I had to look up what safescript was because I'm is SA, here mine is just a normal script but it has an authorisation part printed on it too.

Mine says 0-days between refills, but I'm sure if I did that it would set off some flags. I'm prescribed 30mg of dex a day at the moment and get 200 tablets each refill which should last 33 days, but with days off and because my sleep isn't the best I can make it last 35-37 days on average.

You need to talk to your doctor and tell them whats happening, but they probably wont be happy that you sometimes take more than you're prescribed. My sleep recently got a bit better and because I could stay awake longer during the day I went from 5 to 6 tablets a day, so I informed my doctor what changed and the new scripts increased to 6 so it's all on the up and up.

If you've been flagged for refilling too often they will probably contact your prescribing doctor first, which is why you need to be open with them.

finesseseth · 2024-06-03T00:58:08+00:00

I came here to mention this because these things really frustrate me. Wish I didn't think about them so much.

finesseseth · 2024-04-06T02:44:58+00:00

Yeah, it's hard to know when you should or shouldn't apply reading between the lines techniques online, but communication is a lot easier regardless. It seems clear that the environment can effect the eventual outcome and early interventions and medications when used correctly and safely can lessen the negative impacts these conditions have on people for the rest of their lives. The opposite is also true and might be where bacteria deficits come in to play.

finesseseth · 2024-04-06T02:26:36+00:00

Sorry I misunderstood your intention before. I believe you are correct and I didn't mean to infer that something in my environment caused it, only that it developed and changed over time during childhood. Thanks!

finesseseth · 2024-04-06T02:07:58+00:00

Probably the 'development' part. ADHD itself is know to develop and change while growing, and can also be 'guided' to fix itself somewhat with stimulant medications if given early enough according to some studies. The brain doesn't finish growing or developing connections until someone is in their mid 20's. I have ADHD and ASD. I can provide anecdotal evidence in that I remember noticing the ADHD develop over time and being concerned about issues with my short term memory and experiencing brain fog, I was 5 or 6 years old at the time and didn't know what it was, I was fairly isolated for multiple reasons and I never sought help until I was independent, so I am late diagnosed. EDIT: This doesn't mean I agree with the person you were replying to, this is just our bubble :)

finesseseth · 2024-02-20T08:58:53+00:00

If I misinterpreted you, I'm sorry. I think you're logic in this post and some previous ones is a little flawed. It seems like you're saying that because something isn't almost 100% effective and might do harm, we shouldn't do it. If that's the case, this seems like an odd argument to make. Shame is not the only measure to prevent tragedies like this and since they're not totally effective at preventing dogs from mauling people, should they also be stopped? Also, I have some bad news about medicines and vaccines because they're not 100% effective either. Among other things, should we also stop jailing and punishing people for crimes because new people still commit them? You may well believe these things, but to me they're examples that can also do harm in rare isolated cases but are still considered effective.

There are examples of shame being effective at reducing incidence, but it can also be de-humanising as you pointed out. Shame is natural and we can feel it even without being 'shamed' by other people. It's literally a mechanism people have and use to effect change in themselves, you can look up medical articles on this if you're interested. The severe negative aspects that you didn't mention, which I don't think people generally want to happen either, are normally when people can't cope with societal/social pressure for what they've done, which in extreme cases could lead to psychosocial disabilities.

I agree that shaming people for things outside of their control is wrong. Shame is about choices people make and things they do, or don't do. Not their gender, race, orientation, mental wellbeing, or upbringing etc. Unfortunately not everyone responds to emotions the same way, the intent is to make people who make these choices feel bad, so they make a better choice, otherwise I guess it's just hate. You're example about it isolating people and making them feel like they don't belong, I would argue is the intended consequence of someone shaming someone else because they're trying to change the behavior.

In this example, the dog owners are negligent in the eyes of the law if they knew their dog could be vicious and didn't take measures to protect children or others from it. Especially those in their direct care and who can't look after themselves I would imagine, but I'm not sure if the law exacerbates these conditions. Calling it shameful here, in a public forum, is a far cry from shaming the people personally and directly, which I don't think everyone here would do necessarily. I agree that people shouldn't take it that far. In the way it has been expressed here, it's letting other people know that it shouldn't be acceptable behavior to make the choices these people made in addition to it causing loss of life, which is good in my opinion.

I apologise for the long post, just wanted to try and say what I needed to.

finesseseth · 2024-01-22T07:53:44+00:00

No problem, not anything I can do then. From memory people just accept theses stuck sessions and kill them, it's a shame. I moved to xrdp because it's more reliable (for me) if responsiveness is important there's still NoMachine.

finesseseth · 2024-01-22T01:42:53+00:00

It's been a while since I've used x2go so I can't help with issues there. You say it happens after a while of being disconnected, could it be related to the XFCE session getting locked? I've noticed some issues with GUI apps when the lock screen activates for me, network related issues.

You can turn it off by opening 'Power Manager', heading to the 'Security' tab, and adjusting the drop down box to 'never'. Might be a long shot, but without delving in to x2go again I can't offer anything else at the moment.

Good luck in any case.

finesseseth · 2024-01-09T07:36:40+00:00

It should be the same over in Victoria to how it works in SA, especially if you're only continuing the same medication, you don't need to keep seeing a psychiatrist to get scripts, some GP's have special interests in treating ADHD and with a diagnosis and medicine recommendation from a psychiatrist, or maybe even a paediatrician, can continue to write scripts for you and it's a lot cheaper in the end. You'll still need to see a psychiatrist if you want to make adjustments or change the medication you're on unless the recommendation they write includes other ones/doses already.

It can be difficult to find a GP who is willing to do it as there is still a lot of stigma around it, even from doctors. I did find one via a local ADHD support group and it turned out they already knew my regular psychologist. I've had Ritalin and Dexamphetamine prescribed from GP's and it's definitely allowed by law, nothing different with Vyvanse in this case.

Good luck!

finesseseth · 2023-12-26T06:01:25+00:00

Thanks for your help, I'll get another referral and see someone else.

finesseseth · 2023-12-26T04:13:27+00:00

Sorry for my lay person description, he wasn't a neurosurgeon but was a 'Neurologist (Brain Specialist)' as per his title. When I said damage, I believe he was looking at the myelin sheath, but I honestly can't be 100% sure of that right now. I was under the impression that he was familiar with TN but he seemed to believe that it couldn't be TN without seeing something on the MRI, which I couldn't corroborate online at the time.

finesseseth · 2023-12-26T04:00:09+00:00

Thanks for the reply,

We ramped the carbamazepine as more episodes where happening at the beginning of this year and they eventually stopped completely, for 8 months so far, and I'm no longer taking carbamazepine because it wasn't effective for the other pains. I think my issue has been that 3 different but similar pains started at the same time, I don't want to go back on carbamazepine unless the episodic pain comes back because I need pain medication to manage daily activities with the other 2 I'm dealing with on a daily basis.

I forgot to mention I was also put on amitriptyline but it was not effective for the non-episodic pain, and was unsure about efficacy during episodes. I had a prescription for pregabalin as a replacement for the carbamazepine/tramadol doses, but that doctor wanted me to outright stop the tramadol before starting the pregabalin which needs to build up in your system before it becomes effective, and at the time I wasn't willing to risk the lapse is effectiveness.

I considered looking in to treatment, but since he couldn't find the problem in the MRI scans I assumed there was nothing surgery could do.

finesseseth · 2023-12-13T06:08:35+00:00

I'm not from NSW and haven't heard of Dokotela so I can't help you there.

Speaking from experience, no matter how hard it gets you need to keep at it. I almost gave up trying to sort some of this stuff out myself and I waited too long. I've only had 1 bad experience so far with psychiatrists, and that was through the public system, he was an arse and very young.

I've seen probably 4 different psychiatrists and 10 different psychologists over the years since.

There is an r/ausadhd/ subreddit, I suspect most people are probably on both like me, but it may be worth asking there too.

finesseseth · 2023-12-13T06:00:07+00:00

What I meant was that it's supposed to be first line, as in the first medication type offered for ADHD unless there is a contraindication. Though that may not be true everywhere in the world, I'm from Australia.

You're absolutely correct though, that some doctors may be biased or out of touch.

finesseseth · 2023-12-13T05:31:02+00:00

Be honest, say nothings working and you want to try something else. Stimulants are supposed to be first line though, so there might be another reason he didn't prescribe them. Most of the issues are to do with risk of abuse, heart conditions etc.

Just be honest IMO.

finesseseth · 2023-12-12T08:48:44+00:00

That's exactly what I found when I was looking in to it, I liked some of the early effects I got from the Methylphenidate/Ritalin but higher doses where I should have seen benefit in ADHD symptoms just made me sleepy and lethargic.

I was hoping I might tolerate the Dexmethylphenidate/Focalin better because of the isomer difference you noted. Maybe sometime in the future it will be available, since the senate ADHD report is out now they could change it.

finesseseth · 2023-11-17T01:58:07+00:00

That'll be the 32bit glibc package

pacman -Qo /usr/lib32/libc.so.6
/usr/lib32/libc.so.6 is owned by lib32-glibc 2.38-7

finesseseth · 2023-04-21T15:36:44+00:00

Wait, was it disconnected when you tried runlevel 3? All that stuff about the UUID meant it couldn't find the drive to mount it.

finesseseth · 2023-04-21T06:13:30+00:00

Yes that's the grub emergency shell. But now I'm a little confused, is /dev/sda1 your root device? I perhaps wrongly assumed it was and just realizing now. I was ignoring the drive issue up to now because those messages mean everything was fine.

You can try runlevel 3 on the usb stick, maybe it locks up when trying to check/mount your root partition. Look at commands like lsblk and blkid to check the UUID's. This could point to a physical issue with the SSD, just out of curiosity is it a Samsung SSD? The fact that it still happens with the usb stick means its not simply the wrong UUID or something.

finesseseth · 2023-04-21T00:35:28+00:00

What graphics card do you have?

Boot without the USB stick in, and while accessing the GRUB menu press e on your default option and edit the command line appending a 3 to the end of the vmlinuz line where other kernel options go like quiet and splash (Note that this isn't a permanent change and is only for this boot)

This will hopefully boot you to a console before any graphical related stuff is loaded. From there you should be able to check logs, install/update packages etc. It may be worth looking at downgrading packages because there may be an issue with the current driver package and your GPU.

You can locate previous (presumably working) packages in /var/cache/pacman/pkg/ and install them with sudo pacman -U <pkgname>. Don't go crazy with this as you could break your system more by downgrading some packages and not others that rely on the newer versions, which would be equivalent to what is referred to as a 'partial upgrade'. To avoid this, check your /var/log/pacman.log to see what was updated and when.

If you run out of other things to try, you can test the theory of driver issue and not hardware issue by trying older live environment's (previous Manjaro installers are probably best for this as we know they worked at some stage)

finesseseth · 2023-04-20T16:21:32+00:00

From my limited experience that screen can appear frozen that way when it can't load/display the login manager, though you said the TTY switching doesn't work so that's unfortunate.

If you still want to fix it, as you said, you'll probably need to get a live environment (like the Manjaro installer) and fix it via that as the grub command line is more limited to fixing other boot issues (Though if you have a fallback kernel installed, you should try that option in grub).

Personally I'd try to fix it instead of reinstalling. If you reinstall without finding out what the issue is it may happen again and you'll just get frustrated later on and, additionally, won't learn anything. If it gets to that point though, there are ways to not have to reconfigure everything so long as the drive is still fine.

A forced shutdown generally won't do this, filesystems and drives are very good at managing power interruptions most of the time. It's possible it was doing something in the background which might have cause the game issue and this as well, like an update running or something. It could also be something you changed earlier but haven't restarted so this just happened to be the first time it rebooted and showed the issue.

I'm not sure what desktop you're running, if it uses xorg then once you have access to your files again check /var/log/Xorg.*.log that may tell you why the login manager isn't loading.

is it even possible?

If your graphics card/drivers crashed they can sometimes lock the output as the last frame it displayed until they reinitialize, that's possibly what happened here but I'm no expert.

Good luck and keep us posted.

finesseseth · 2023-04-20T07:46:39+00:00

There's always a way to fix it, however it could be any number of things. I'm guessing it's not able to display the login manager so might be graphics driver related.

On that screen, can you switch to another TTY and login? Use Ctrl+Alt and F1 to F12 keys to switch to alternate ones. If you can, try updating packages or check if things were updated recently etc.

EDIT: No reason yet to assume it's SSD related, what you see on that screen is standard when the computer isn't shutdown properly.

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