need medical attention, unable to leave home, non-verbal, autism, persistent panic

[matthiew]

Hello All,

Recently diagnosed with ‘Autism Spectrum Disorder’

Spent much of life high-functioning. Recent stressors resulted in significant impact in my daily functioning.

• Unable to call support services since becoming non-verbal
• Cannot leave home (my bedroom) as intense senses cause immense meltdown/shutdown panic that won’t stop without medical intervention

Been prescribed benzodiazepine type medication ‘a drug of dependance’ as regular doctors don’t know how to treat an autistic person, it’s my only known support that stops panic. Trying to avoid the meltdown until I pass out situation, it's terrifying.

Panics unavoidable, I'll shut myself in my room. All I hear is planes, birds chirping, little noises from everywhere. I’ve tried multitude of sensory aids all having negatives showing little benefit. The prescribed drug of dependance is my only working treatment until a qualified professional can investigate.

Aware we cannot discuss prescription medicine by name therefor shared its ‘type’ in order to express the seriousness of my predicament. My use has been ongoing daily for 2 months. Long term use increases tolerance and dependance.

My primary question, how can one get support when incapable of leaving home? Especially when in need of a drug of dependance?

Only option i'm aware, once running out won’t take long until my intense senses triggers and will need emergency services, being non-verbal those unfamiliar will be terrifying in moments of need within itself. I’m stuck.

How can I get supports before it’s too late?


For further information assessment shows ‘Level 2: High Need of Support’ needs under ‘Criterion A: Social/Communication’ & ‘Level 3: Very High Need of Support’ need under ‘Criterion B: Restrictive/Repetitive/Behaviours’ under DSM-V criteria.

Being referred to AutismSA being a NGO so far recommended an OT assessment for $900 unless on NDIS. Recently paid $1000 for my autism assessment. Autism is a major financial burden not experienced with mental illness' in Australia due to easy access of supports. My assessment could take NDIS until up to 5 months to approve relevant supports.

Frustrating misdiagnosis gave prompt support with SA Health Mental Health Services, a whole lot of wasted government funding. Now the funding can be used correctly but Mental Health Services aren't suitable for Autism and struggling to support my needs. I'm at a loss.

[Nurse_Jenn]

Hi Matthiew,

This sounds like a really tough situation especially finding yourself unable to discuss anything verbally. And the panic attacks your are trying to avoid sound really terrifying. I wonder if you have a family member or friend that you have to support you through some of these difficult times?

I was thinking of ways where you could see a health professional (I am assuming a GP). I thought that if you did have someone you trust, you could ask them to attend an appointment with you as an advocate/support who could speak on your behalf and escort you to the appointment to help you avoid a panic attack. Another way could be to contact a National home visiting, bulk billing GP service called the National Home Doctor - you can ring the number 13SICK or 137 425 to find out more information. These may be a few options to help you see a health professional through your symptoms and avoid having to use Emergency Services. However if you are feeling so stuck that you need immediate support, don't hesitate to call 000 as having such a high level of distress can be an emergency situation.

It is fantastic that you have reached out through the beyondblue forum and encourage you to continue to do this. There is also a beyondblue online chat service where you are able to get a more immediate response.

Having a plan can be a supportive way to move through some of the panic and anxiety you are experiencing especially when you are coping with a new diagnosis such as Autism Spectrum Disorder. Having to wait five months to gain support through the NDIS is a long time but putting an interim plan and some strategies in place can really help. You might be able to gain some support through Autism Awareness.

If you get to a GP you might be able to get referral for a psychologist and perhaps find one who does telephone counselling to help with you anxiety while you are waiting. There is also online programs through the MindSpot Clinic which can help with anxiety symptoms if you feel up to doing something online.

These are all just some suggested strategies to some very challenging and complex issues you are facing. It would be good to hear more of your story and some of the recent stressors you are facing to see if there are other suggestions that other forum members might be able to offer you who have dealt with a similar situation.

Wishing you the best possible outcome,

Nurse Jenn

[matthiew]

Thank you for your thorough response Nurse Jenn

Thankfully have nice family but financially burden struggling to give time for my complex needs. Considering a carers pension until NDIS approves.

May book a double appointment with GP close to home, only one main road to battle.

It becomes complex, in panic/shutdown. Not fearful, rather analytical. Assessing my situation in a balanced manner. Knowing it’ll be over once my benzodiazepine kicks in.

Panic occurs several times daily. I’d rock back and forth, headphones on, single song on repeat waiting an hour until medication helps.

Doing something for myself. Getting food, brushing my teeth, etc… I can do it. However cognitive inflexibilities/movement triggers senses into overdrive. I tread caution in every action, weighting with my families struggles hurts.

In overload intensity progresses, everything becomes unimaginably noisey/bright. In this state I lose ability to understand where I am. The fear starts once feeling lost.

Used my psychology visits. Psychologists explain things already known. Internalising my upset to avoid seeming rude.

One psychologist fully supported. Understood my misdiagnoses, under evaluation seen nothing wrong. I’m different. Differing learning styles, finding embracement.

Unfortunately psychology’s been little help, earlier this year it dawned on me. Volunteering supporting NDIS disability programs (only job I’ve had) fellow worker noted my communication with participants & was curious whether I studied psychology. In which explained my incapability completing cert 2 @ TAFE in I.T. due to my complex learning style.

I learn by watching, analysing what I see, spend small amounts of time researching reasoning behind certain behaviours then figuring the rest myself.

My assessment reads, “he demonstrated ‘expert’ knowledge on medication and mental health diagnostic criteria”

Becomes upsetting. Psychologically minded, savant like understanding of human behaviour but struggle immensely. Know things will work out, frustrating seeing a system with priorities out of order.

Past 8 years of government funding supporting misdiagnosis of a psychotic disorder.

Literal interpretation of language, confusion from antidepressants/antipsychotics, vivid imagination/memory and intense senses. Confused myself believed a professional opinion trusting a respected Consultant Psychiatrist.

Planning to advocate for better understanding sharing my story in support of appropriate diagnoses (:

[matthiew]

been 3 years nobody done anything to help me

ndis keeps underfunding then refusing to fund medical
medicare telehealth cannot help because i need to physically present
mental health services tell me im the problem and refuse support without making adequite assessment or discussing with any of my supports

under significant stress traumatized like state since my inital post 3 years ago without break, my whole body has shut down im bedbound i have no feeling in my body, i just want to feel something so bad, my brain feels like a tinging rock like every feeling hits that rock blocking any emotion or physical feeling

medical supports managed to self fund come to possability of mould exposure and/or metabolic issue but only so much they can do when government refuse support, very complicated because all my life medication never help, now find likely mould or other non mental related illness causing these symptoms and it's so bad i have paradoxal reactions from all meds since 2020 theirs nothing to ease symptoms anymore

im stuck and there isn't anywhere left for me go, literally no government departement cares how much i'm suffering and ndis keeps funding these things i wouldn't need treating medical issues first

it's at point im unsure how much longer i can manage this level of suffering and it's clear there is no support for me at all

if i say anything bad i'll get hospitalised, and my sensory issues lose all my perception with most intense pain imaginable and they won't have the answer quick enough then hold me against my will

reaching out for support isn't the answer, cannot see a scenario where they'll actually help me, i've already tried everything, cannot talk to anyone about it because each time it triggers me makes everything worse because i've reached my limit and i know there isn't anything anyone can do that won't make things worse

[therising]

Hi matthiew

I feel so incredibly frustrated for you. I can't blame you for questioning so much when so much of what you've faced has been highly questionable.

Although the following doesn't necessarily offer a straight out solution, it may perhaps offer a different more constructive perspective, a perspective I wished certain medical professionals would consider. Jac den Houting is a professional who not only researches facets of autism, she manages living with autism herself. She has a brilliant mind. I discovered her on YouTube. The video 'Why everything you know about Austism is wrong' is incredibly enlightening. It's something I believe a lot of professionals could learn from. If you have a bit of time it's well worth a look.

While people who struggle with autism have many incredible natural abilities, many medical professionals only see what they term as being 'wrong'. While someone who experiences autism may have incredible abilities when it comes to sound, for example, (leading them to be musicians, careful listeners/great therapists, highly intuitive with what they hear naturally coming to mind, sound engineers and so on) the challenges that such a highly tuned in person faces aren't always addressed constructively. A strange comparison but if you could compare it to the superhero Superman, with his incredible ability to hear, imagine Superman not being able to switch this off or turn the volume down. While being given no way to manage this ability, it would be unbearable. It's like every sound becomes a trigger, including a highly stressful trigger for the nervous system. it becomes a physical issue.

With a savant like understanding of human behavior, I imagine you find the behaviour of a lot of professionals and systems you've encountered to be highly questionable bordering on insane. It sounds like you have incredible natural abilities which aren't being seriously addressed. Kind of like 'Let's brush aside the incredibly natural or super natural abilities and let's focus on the 'dysfunctional side of things''. Problem with this is it can lead people to define themself as 'dysfunctional' as opposed to defining themself as 'being misguided by ignorant people' who are ignoring some seriously impressive and outstanding qualities.

Could it be time to consider managing with a different system, which sees autism from a completely different angle? Could the current medical system actually be getting in the way of progress to some degree?