Hi, this is my first time here.

I am 28, male, white, and have a litany of mental illnesses including complex post-traumatic stress disorder stemming from childhood trauma, agoraphobia that prevents me from leaving the house unassisted, a schizophrenia spectrum disorder and autism spectrum disorder. It feels like every single time I talk to a mental health professional, I leave the zoom call with a new diagnosis. I'm working on collecting the whole DSM.

I want to impress upon anybody reading that although I am clearly able to express myself competently through writing, physical social interactions are near to impossible, and I have had some extremely negative experiences in public. The most notable recently was when my previous dog escaped from the house. I was able to catch her, but didn't have a lead, collar, or anything to bring her back to the house. Because this was a disruptive event, I was already overwhelmed, and beginning to experience hallucinations, extreme paranoia, etc. Eventually, I'm sitting on the footpath barefoot in my PJs with my dog in my lap, unable to carry her back to the house. I ask someone walking by if she'd mind sitting with the dog for a minute so I could go around the corner and get what I need. She looked at me and said she wasn't comfortable with it and that "that's how harm happens." Which is fair enough, but because of my mental illness, this moment cascaded into a whole event.

So there I am, in the street, in unwashed four day old tracksuit pants, I haven't had a haircut in over a year, haven't shaved in almost as long, screaming at this random person about my paranoid thoughts.

Let me just say that she did absolutely nothing wrong and if a creepy homeless-looking man asks you to wait alone somewhere or follow him, don't do it.

With that said, I've now been in treatment for years, I take the pills, I'm on NDIS and I'm on the DSP, but I'm not improving, and these systems are not enough to survive on without a parent looking after me. It seems inevitable that I'm going to be homeless by 35 - 40, and obviously my disability is profound enough that I won't survive that. I'm unsure what to do. I feel like I should die when my caregiver does.

Dear plg14xd5

Thank you for posting in our forums. We are pleased you found the courage to do so. This inner strength can help you at the times when things get difficult, such as the time you talked about in your post.

We understand how scary the future can feel. After all, who knows what the future will bring.

That said, the future has as much chance of bringing something positive as the opposite, so the inevidibility may not be so predetermined as you fear. We find that the world has the funny tendency of bringing that which is unexpected. The trick is to find a mental perspective where we can allow ourselves to become aware of the potential for change when it shows its possibility.

One thing which might help is to find two caregivers. This way, you will usually have one whenever something happens to one of them.

Another suggestion we would like for you is to consider joinging a local ASD support group. Autism Australia may be a good resource for locating such support groups.

Warm regards,

Sophie M.
 

Hi mate. Love your sense of humour!!

I'm sorry you met someone who didn't offer you help. The truth is, women don't trust easily because they'd be foolish to. Obviously things got worse and it was not her fault, but it's a shame she felt unable to just help.

The whole thing of people with caregivers is tough for the reasons you state. I know one of my kids has not been stable and my concern has been to leave enough money for him to live as full a life as he can. Ultimately it's a shame our society doesn't provide for vulnerable people like you. you're obviously in a tough spot. How about this - you deal with one day at a time and I'll keep advocating and voting for people who would make sure that there was a place in society for you, and you were kept feeling safe?

Hi,

Unfortunately, finding a second caregiver isn't really possible. I can hire a DSP or something like that, but that's not the same role: I'm referring specifically to someone I live with who is able to cover rent and take care of a lot of day-to-day BS I'm not able to do myself. I am a dependent.

As for ASD groups, they tend to focus on either children, parents of children with ASD, or higher functioning / "level one" people with autism, who are essentially able to mask and integrate into society successfully, which doesn't describe me. The handful that do exist for people in my situation are extremely paternalistic and encourage practises that essentially amount to applied behavioural analysis: they teach you how to mask symptoms and behaviours but not how to actually manage any cognitive consequences of the disorder.

Please don't take this as me being hostile, disability scenarios are very nuanced and when lacking direct experience with complex / profound disabilities, a lot of advice that works in other scenarios kinda becomes facile.

I'm also autistic, I am 53 and I can't find any services at all, I am high functioning and just wanted a diagnosis.

And yes, those people who 'help' by teaching you to mask more and 'appear normal' are basically abusive. Stay away is my advice.

Dear plg14xd5

Thank you so much for your reply. Unfortunately, we very well understand the complications around living, and effectively functioning, within the dictates of 'normal' society for those with severe disabilities.

We understand that NDIS has various appeals mechanisms, which are complex to file. Fortunately, we also understand that there are trained advocates who are funded to represent clients with severe disabilities.

We would like to encourage you to check with the various support organisations which work with those with any of your diagnosed disabilities about do they have access to any of these advocates? Also, in some cases, NDIS may provide direct referrals.

Warm regards,

Sophie M.