My support funding has finally come through!

[Neri]

So, some of you might already be informed that I applied for funding, here in Australia, where we are blessed to have a tax payer funded thing, called the NDIS, which stands for National Disability Insurance Scheme.

Last year, in sheer desperation, I called the National Autism Hotline asking for help and they advised me to apply for NDIS. So, I promptly did, and finally the funding has come through!

It doesn't usually take so long but I applied just before they initiated a complete systems overhaul. Word on the street is that they have been utterly inundated with Autistic people and their families wanting support and they might be going to create an Autism specific system in the future, but, for now, they are it. Which, sounds as if we are exceptionally fortunate, just to have, because most countries seem to offer much less, if not, no support. So I feel incredibly fortunate.

I applied through a "psychosocial" lens, as I had had previous (mis and incomplete diagnosis's) of mental health conditions, but, due to knowing I was on the spectrum, but, not having official diagnosis, I went ahead, got a loan and purchased my official ASD and ADHD combined diagnosis. It turns out I qualified as ASD2 and that gave me access to the NDIS.

So I have been waiting since early December, when I got word I had been approved solely on my ASD2 diagnosis, for my "planning meeting" which I had last Thursday. Then, last night my email of my plan came through!

This gives me funding to purchase 6 hours of support each week, an occupational therapist to access my needs to further detail, a plan manager who pays the bills, a support coordinator, who helps me find the right supports, some transport costs, and a lump sum to buy devices. I will be purchasing some loop noise cancelling tech, yay! .
They will help me get my license so I can eventually get myself around. Get to things like music therapy, movement therapy, and to go and get some training to get work.
Oh and I get a "Recovery Coach" which I don't know much about yet.
I an very excited, as I've already looked up support workers in my area and there are some really compatible sounding ones.

It's gotten harder and harder for me to leave my house on my own and to function within the home. This is due to a combination of factors, including long term untreated, unsupported, undiagnosed ASD and ADHD, a lot of traumatic experiences, long covids (2 bouts, in 2 years) a huge load put on me by my (all neurodivergent) family, being poor and disadvantaged and having to live in troubled and violent neighborhoods and my extreme sensitivities.

I'm 51 now and to have this support coming through is enormous, in giving me hope for my future. On my goals list, which they work off, I have the goal of wanting to do advocacy for Autism, ND and mental health conditions; I've had symptoms of a lot of them, including psychosis, mania, depression, eating disorder, drug and alcohol, chronic anxiety, been non verbal, been SAed and DV'd, teen drop out, homeless, as a teen and adult, teen mother and mother of multiple ND children, including schizophrenic and high needs ASD with intellectual disability and having had a lot of narcissistic abuse, and I am "2e" which means Twice Exceptional, in that I am disabled, and at the same time, very bright, gifted and talented (particularly in the creative arts and performance/entertainment~music and dance, more specifically).

So I thought, why not share my journey with the forums?

I have had some interim support which has been AMAZING. I've gone to an art and craft group, yoga, had support to get to doctors, dentist and naturopath for my ADHD (which is helping A LOT) am going to a music therapy group (10 week group with a performance day at the finale) and help with shopping and getting to a personal trainer/exercise physiologist.

So there you go, I know it's not much comfort for those who have no access to such but, hopefully, it can provide some vision for other people in other countries, of what can be achieved and how to help us Autistic peeps, as, if you check out our life expectancy stats and such, are very horrifyingly poor outcomes, a lot of the time, with some exceptional highly successful Autistic people, and a lot of us struggling with a multitude of mental health comorbs (which is a misnomer in its name, as all mental health conditions have a physiological origin), poor relationship outcomes, under and unemployment, suicidality, lower life expectancy and the like.

So, just to end on a more positive note, my life has been an uphill struggle with most of the horrible things that happen to autistic women, in particular. Autistic men often struggle to meet partners, but more commonly, us autistic women end up being abused in relationships and being heavily exploited. and so I wanted to let people know that, sometimes,especially, when you do A LOT of self development, you can end up being a shining light of hope for others, even when your life has been very, very challenging, due to being born with this condition.

I have never stopped working on my deficits, so even though I am diagnosed with ASD2, I've overcome my extreme communication deficits, my depression and chronic anxiety, my anorexia that led to brain damage and psychosis, my self harming and suicidality, my drug problems and my loneliness.

And I will be updating this thread, for any and all that want to come along and observe my journey from here on.

 

[Aspychata]

Thank you for sharing all of your story here. There are definitely ups and downs, especially if you are female. I have experienced a lot of predatory behavior from other people as l have aged. Glad that you applied for assistance.

 

[Neri]

Thank you for sharing all of your story here. There are definitely ups and downs, especially if you are female. I have experienced a lot of predatory behavior from other people as l have aged. Glad that you applied for assistance.

Thank you @Aspychata. I'm sorry you've had to deal with that. It was one of the reasons I stayed in my terrible relationship for so long, I was intimidated about other guys pursuing me. I'm thankful that my guy friend now, has scared off a few hopefuls. I'm a bit too nice, and friendly, and guys seem to have gotten the wrong idea quite a lot, but, hopefully, not anymore. I'm coming out of hibernation and talking to some guys that I do music therapy with, but, they are all respectful and courteous.

 

[Aspychata]

Exactly well said, l have been pursued by men that tell me l need to be their girlfriend. But the number of men coming on to me is distressing because l don't really date, probably due to being ND. So l finally made the decision to move back with a previous man in my life for the exact same reason. I just afraid to say that because l may come across as condescending, oh boy. Thank you for your post.

 

[Aspychata]

What really hurts is how shamed l have been made to feel by a lot of people who can't fathom not dating others. It's really felt hurtful. ND people should feel free to live their life on their terms without others trying to micromanage them.

 

[WhitewaterWoman]

That’s great news, Neri. An exciting new chapter of your life.

 

[Rachie]

Congratulations. I am glad you have got what you deserve and some support. It is good to read that are now able to make some time for yourself for things to support you. I hope you can keep up with that. You do an incredible lot as a mother and partner with Level 2 ASD. Not everyone could do it, but you are blessed in this area as well. Keep on trying to push through how you are doing. I wish you well.

May I ask you did you ever get support for your anorexia, it is sad that it gave you brain damage and a psychosis.

 

[Neri]

Congratulations. I am glad you have got what you deserve and some support. It is good to read that are now able to make some time for yourself for things to support you. I hope you can keep up with that. You do an incredible lot as a mother and partner with Level 2 ASD. Not everyone could do it, but you are blessed in this area as well. Keep on trying to push through how you are doing. I wish you well.

May I ask you did you ever get support for your anorexia, it is sad that it gave you brain damage and a psychosis.

Thank you @Rachie.
It has been pretty full on, opening up to support like this. I have been much more social these last few months. I now have a wonderful NDIS support worker who I am getting to know. As well as a support coordinator who seems like someone I can connect with. Both suspect themselves as being AuDHDers, which might be why I feel comfortable with both of them.

As for being ASD2 and doing the things I have been able to do. Yes, I have worked very hard due to, not only having to survive in a hostile, uncaring and somewhat dangerous environment, but also having offspring who were in great peril, had it not been for me working tirelessly to support them, as well. My ASD2 is offset by an IQ around 145, and this levels up the playing field somewhat.
On top of that I have done a huge amount of what is commonly referred to as "personal development" or, put in other terms "Spiritual growth". The value of this cannot be underestimated.
At the moment, I am embarking on an accelerated trauma recovery journey in the form of Shamanic practise, which includes Shamanic breathwork, psychedelic assisted therapy, and music and rhythm assisted journeying, as well as reading Shamanic material and being mentored by a Shamaness from Brazil. I am lucky that she lives only about an hour away in the rainforest of Currumbin Valley in the Southern Queensland hinterland.
It takes A LOT of therapy to gain faculties and coping strategies with ASD2 combined with complex PTSD and despite not receiving it as a child, other than being fortunate to gain some peace and wellbeing from all of the natural beauty I was immersed in, growing up along the east coast of Australia; the rainforest and beautiful beaches were my lifeline. I was always very "psychic" , "sensitive" and attuned to the meta reality, shall we say, from a very young age.

I don't think I would have been classified as ASD2 without the extreme chaos, and the abuse and neglect I received as a child though. I think having pretty severe ADHD and Cptsd tipped me over that line.

To answer your question, I only got help with my anorexia with plant medicine. Combine that with the incentive born of having my own children to be responsible for. I am an extremely strong willed woman and I had other people to live for. I have lived for other people, a lot, in my life. The extreme and terrible hellishness I survived with having this condition and, at the same time, being subject to my own, deeply traumatized, very obviously autistic parents, and a huge amount of abuse, trauma and bullying, due to my autistically- induced vulnerability, gave me ample experience to develop acute and powerful empathy for other's suffering.

 

[MNAus]

Thank you @Rachie.
It has been pretty full on, opening up to support like this. I have been much more social these last few months. I now have a wonderful NDIS support worker who I am getting to know. As well as a support coordinator who seems like someone I can connect with. Both suspect themselves as being AuDHDers, which might be why I feel comfortable with both of them.

As for being ASD2 and doing the things I have been able to do. Yes, I have worked very hard due to, not only having to survive in a hostile, uncaring and somewhat dangerous environment, but also having offspring who were in great peril, had it not been for me working tirelessly to support them, as well. My ASD2 is offset by an IQ around 145, and this levels up the playing field somewhat.
On top of that I have done a huge amount of what is commonly referred to as "personal development" or, put in other terms "Spiritual growth". The value of this cannot be underestimated.
At the moment, I am embarking on an accelerated trauma recovery journey in the form of Shamanic practise, which includes Shamanic breathwork, psychedelic assisted therapy, and music and rhythm assisted journeying, as well as reading Shamanic material and being mentored by a Shamaness from Brazil. I am lucky that she lives only about an hour away in the rainforest of Currumbin Valley in the Southern Queensland hinterland.
It takes A LOT of therapy to gain faculties and coping strategies with ASD2 combined with complex PTSD and despite not receiving it as a child, other than being fortunate to gain some peace and wellbeing from all of the natural beauty I was immersed in, growing up along the east coast of Australia; the rainforest and beautiful beaches were my lifeline. I was always very "psychic" , "sensitive" and attuned to the meta reality, shall we say, from a very young age.

I don't think I would have been classified as ASD2 without the extreme chaos, and the abuse and neglect I received as a child though. I think having pretty severe ADHD and Cptsd tipped me over that line.

To answer your question, I only got help with my anorexia with plant medicine. Combine that with the incentive born of having my own children to be responsible for. I am an extremely strong willed woman and I had other people to live for. I have lived for other people, a lot, in my life. The extreme and terrible hellishness I survived with having this condition and, at the same time, being subject to my own, deeply traumatized, very obviously autistic parents, and a huge amount of abuse, trauma and bullying, due to my autistically- induced vulnerability, gave me ample experience to develop acute and powerful empathy for other's suffering.

Congrats on getting the plan approved. The NDIA is a complete mess at the moment. We're still waiting for the plan update for the two kids. Was due to be reviewed in May, and here we are, still nothing. They told us we can spend the same as last year while the plan is being reviewed, but that money runs out pretty soon as we needed to take up appointments from waiting lists and their goals have been broadened. We can't really fund it ourselves, so they lose their therapies if the NDIA can't sort things out. Right to the back of the 12 month+ waiting lists. Really not sure what to do, because they're essential things that basically help them exist. Things like dealing with food, basic OT skills, speaking without stammer. It's going to set them back massively in life if this funding doesn't get sorted out. I suspect regular high school for the older of the two would no longer be possible, as that's what we're working towards.

One word of advice. Getting the diagnosis is drawn out and tough. Getting the NDIS plan is one challenge further. Finding therapists that aren't borderline scam artists is another level completely. The industry is rife with crap providers. Out biggest annoyance was the "assigned to therapist, expensive intro sessions, charged to make a plan, therapist leaves" cycle that just burns through your funding.

 

[Rachie]

Neri, thank you for sharing what you have done. Your strory is a hopeful one but It is not always easy at all, and we are human beings who have needs as well. I am glad that you are getting support that you need now as well.

 

[Roisin]

Yes indeed, thank you for deciding to share this, there are many experiences in your post that I can relate to and I find myself awed by your determination.
Also hurray for getting support after so many years of difficulty on your own.

 

[Neri]

Congrats on getting the plan approved. The NDIA is a complete mess at the moment. We're still waiting for the plan update for the two kids. Was due to be reviewed in May, and here we are, still nothing. They told us we can spend the same as last year while the plan is being reviewed, but that money runs out pretty soon as we needed to take up appointments from waiting lists and their goals have been broadened. We can't really fund it ourselves, so they lose their therapies if the NDIA can't sort things out. Right to the back of the 12 month+ waiting lists. Really not sure what to do, because they're essential things that basically help them exist. Things like dealing with food, basic OT skills, speaking without stammer. It's going to set them back massively in life if this funding doesn't get sorted out. I suspect regular high school for the older of the two would no longer be possible, as that's what we're working towards.

One word of advice. Getting the diagnosis is drawn out and tough. Getting the NDIS plan is one challenge further. Finding therapists that aren't borderline scam artists is another level completely. The industry is rife with crap providers. Out biggest annoyance was the "assigned to therapist, expensive intro sessions, charged to make a plan, therapist leaves" cycle that just burns through your funding.

I've already lost money to griftey service providers, but. I'm happy with my NDIS funded support worker. He's one of the least griftey people I've ever met. He suspects himself of being on the spectrum too.
Yes, I've had quite a few folk eager to feed at the trough that is NDIS funding. Quite the eye opener.

And yes, the system is straining under the weight of much change and demand. My ASD2-3 son had to wait much longer than previously for his new yearly budget, but, eventually, it came through. He lives in supported accommodation. He was fortunate his in home supports remained supporting him despite not having the money through yet.

I hope your kids get their support needs addressed pronto. I had to wait 5 months from being accepted to getting a plan meeting. Luckily I had a non NDIS support org in the interim. Actually they are still supporting me a bit, as my budget was woefully inadequate. I've since had an OT assessment that the OT assures me is likely to get me an increase in budget. It will be submitted about now and hopefully, I get the budget I need.
It does make a big difference. I was never able to get my high needs son diagnosed as a child or teenager as his rather narcissistic father refused and blocked every attempt and he is 32 now and is very dependant on support. I wonder, if he'd had earlier intervention, if that would be different.
I know I would be, but, then again, having to manage without has taught me certain self reliance abilities, too.

 

[Neri]

Yes indeed, thank you for deciding to share this, there are many experiences in your post that I can relate to and I find myself awed by your determination.
Also hurray for getting support after so many years of difficulty on your own.

Thank you for the encouraging and kind feedback. . I'm starting to feel like I, can indeed, learn how to thrive.