Defeated, Deflated and Depressed

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Back in 2004, I was diagnosed as having Asperger's Disorder by a well known specialist in the field.

The diagnosis came after I went through a divorce and couldn't form any meaningful relationships (even friendships) with another person, I couldn't get a job (I have never been employed in my life), I couldn't be trained for anything because I was too easily distracted and disruptive, I would freak out in social situations, I was overwhelmed and sensitive to all sensory stimuli, I could not carry on a simple discussion with people...All of the classic symptoms.

In 2004, a board of psychiatrists and psychologists verified my condition of "Pervasive Developmental Disorder" for Centrelink (Social Services) and I was put on the Disability Support Pension. For the past 15 years I have been on Disability Support.

After I was diagnosed, I basically retreated to my room for 12 years...going within myself totally... speaking to nobody...not having any outside connections..not even watching TV because I thought it was too stupid and beneath my level of intelligence - the same applied to most people I had ever met up until that point. I became my own "best friend" and created a whole world and universe inside myself that was made just for ME to live in because god only knows, I couldn't exist in any "external reality" with all of its loud, crass, superficial mediocrity. I barely managed to scrape through my weekly shopping trip for essentials.

Fast forward to 2017, when the Department of Housing became aware of my situation and put me in touch with a mental health outreach team called "Partners in Recovery" and through them, I have gained a small bit of self confidence and learning how to externalise my awareness...so much so, that I am now able to do things like attend meditation classes...where I can still be introverted, but with a group of people doing exactly the same thing..and to type stuff on forums like this one.

Then, a few months ago, Partners in Recovery told me that their funding had stopped...as was the case with many Mental Health services in Australia and if I wanted continued access to Mental Health services, I would need to have private insurance and if I couldn't afford private insurance, I would need to apply for Government Insurance known as the NDIS or the National Disability Insurance Scheme, which has now become one of the MAIN "eligibility criteria" for any form of disability assistance within Australia.

So, with the help of a mental health peer support worker, I filled in an application form for the NDIS.

About 3 weeks later, it came back... declined!

The assessment for Asperger's Disorder (ASD) was "too outdated" and I would need to be assessed again - which is NOT covered by Medicare (Medicaid) and to be assessed and get the report, costs AUD $1,500.

As the doctors who originally had diagnosed me are now retired/working in other fields/not seeing any new patients etc, I will need to get new and fresh reports of my ASD by professionals (at least 2) who are working in the field of Adult Autism and these are not covered by Medicare either..A visit with one of these costs @ AUD $300 per hour..then, the NDIS application also required assessments by occupational therapists, neurologists, brain scans etc etc and NONE of it is covered by Medicare.

I worked out that to do everything the application for Government Insurance required so that I could just be "eligible to LIVE" was going to set me back about AUD $5,000 and as a pensioner, I just cannot afford this!

I had just taken 1 step forward and three steps backward and discovered WHY it was that I was better off living in my own secluded universe...without any human interaction...even though it can get bloody lonely and boring at times (most times).

The end result is that, in Australia if you are a child with Autism, you can get immediate access to any helpful services... services for Autistic children are well funded and catered for.

If you are an adult on the spectrum and you can feed yourself and clothe yourself, nobody wants to know you...you are treated like you have the plague, which adds insult to injury if you already have an existing Psycho-social disorder.

More education needs to be centred around adult Autism without a secondary condition like Down's Syndrome which allows the government to SEE they are "disabled" to get any assistance.

More education needs to be made available to health care providers not to treat "Adult Aspies" as just neurotic individuals with hypochondriasis and histrionic tendencies who are just "seeking attention" or trying to rort the funding system.

I am tired of it...I am over it...and I realise that I cannot live in a world that forever passes unfair judgment and criticism on me because of it.

Thank you for reading.

Does the NDIS have an appeal process?
Because I agree that seems a very unjust decision in your case.

Yes, the NDIS has an appeal process, but an appeal means nothing if you do not meet the "extended criteria" which was not made obvious at the time the application was made initially.

For example, no mention was made about the time period a diagnosis of Asperger's Disorder is valid for...As if being Autistic is "curable" in some way.

No mention was made that the two doctors had to be anything other than my GP and a treating psychiatrist.

No mention was made that I would require the report of an occupational therapist to ascertain how my ASD affects my life, when the whole disability is a socio-cognitive one.

Yes, I can appeal, but it is the appeal which is going to cost me 5 grand!

As for it being "unfair/unjust"...I guess they just don't get all that many applications from adults with Asperger's Disorder, or there would be more allowances for it in the "eligibility criteria" which is more based upon and around physical symptoms... and apparently, "social isolation" just isn't "physical" enough however, if I was socially isolated AND had a terminal illness... different story.

It really sucks, but there is nothing I can do about it. I have learned that being Autistic brings out the total unfairness in social systems and in beurocratic pen-pushers with all of their socially designating "rubber stamps".

My peer support worker goes; "I am so sorry you have fallen through all the cracks"....thing is, wherever there is a "crack" I will always "fall through it" when everybody around me does not and all they can say is "I am so sorry for you" but how can they ever know? I understand they mean well though.

This is one of the reasons why I isolated myself in the first place, because it seemed as though the whole world was made for "everybody else" and NOT me, so I wanted nothing to do with it.

Why I let all these social workers talk me into trying my hand at 'social conformity', I will never know.

Thank you for your kind reply.

I don’t know if this will help but according to the DSM they are wrong
Diagnostic Criteria Autism Spectrum Disorder

Thank you, but it is not a question of definitions according to the DSM, but whether a 15yr old diagnosis by a retired psychiatrist means that I am still on the Autism Spectrum NOW!

To complicate matters, on the form where the question was "Is your patient's condition (a) Terminal/Incurable (b)Treatable (c) Temporary *give expected date of recovery* my GP just wrote "Ongoing" and apparently, he did not answer the question.

In the diagnostic criteria that my current psychiatrist filled in, he just wrote "Social Anxiety" because he said to me "In my professional opinion, you are on the Spectrum, but I am not qualified to make that call and I am not about to put my reputation on the line because of it".

So, when I got the application back that was declined, there were three recommendations I would need to fulfil to get NDIS based upon a claim of "Asperger's Disorder" including:

1. Medical proof of the condition (Assessments, Brain Scans, Neurobiological tests).

2. Verification of the condition through these tests by a qualified neuropsychiatrist backed up by a clinical behavioural psychologist.

3. Assessment of cognitive skills, developmental and social delays by a qualified occupational therapist, so we can ascertain your requirements in regards to how the insurance money is going to be spent in helping you with your condition.

It also stated that I would need to see all of these doctors and specialists for a period of six months before I could reapply (not appeal) for the NDIS as per their guidelines.

The funding for Partners in Recovery runs out at the end of June.

We live in a society of "give me all the reasons for me NOT to do something than for me to do it".

I have always been the one 'exception' to all the general rules..it is a continuing theme in my life and has resulted in me experiencing constant paranoid delusions (which are real only for me).

As a footnote to the above, I have spoken to three other clients of my peer support worker about this...All separately.. their independent replies?

"Oh wow...My application for the NDIS went off without a hitch...All smooth sailing...they never asked me for medical proof or specialist reports...I can't understand what happened in your case...it just doesn't make any sense..."

Now, I hate it when people do this to me because it makes me fly off into a jealous rage.

It makes me question my own worth as a human being "what do THEY have that opens all of these doors with effortless ease for THEM that I am severely lacking in"?

I cannot help but take all of this personally when I notice repeated patterns occurring....like the universe has some kind of vendetta against me and rubs it in through the contrary experiences of others.

I don't know what to do now but go to bed and stay there.

There might be a way to get a new diagnosis at a lower cost, I think.
If you are able to contact a private psychologist with experience with adult diagnosis, they might be able to do it a bit cheaper, and without the OT/neurological consult etc, because there's a bit of leeway in methods used.

I'm not entirely sure, as the govt has recently brought out diagnostic guidelines which are supposed to get everyone doing it the same way, which might be stopping any short-cuts.
But it might be worth contacting a psychologist to ask. Look up local ones who claim to do autism assessments, and ask them what would be involved.

Even if you don't get all the brain scans or whatever the NDIS are asking for, once you have a piece of paper saying ASD Level 2 they've got to accept you, I think. If you get Level 1 or Aspergers type they might not, though. So you have to explain to the psych what supports you need, to get ASD Level 2.

Thank you.

I live in Wollongong, and the only place that does anything like that around here is called "Diverse Minds" (where I got all of those prices from).

I have spent two weeks searching for a psychologist...even in Sydney that specialises in diagnosing adult Autism which isn't going to cost me all of my remaining pension every fortnight...I cannot find one. I have to choose between seeing a psych and eating...I wonder which will win out?

Like my peer support worker says to me: "you must already need to be on the NDIS to apply for the NDIS".

I have had a look at all three ASD "levels" and I experience symptoms from each of them...however, I can communicate very well, I can feed and clothe myself, I can go and get groceries if I need to and I don't have a "carer" and don't need one...The Government is making it so that all those who do have a "carer" or who are of indigenous descent etc get preference and yes, they changed their guidelines to make it more strict...two days before I handed in my application form...it is amazing the things we learn in hindsight and all of the "if onlys" which continue to run and ruin one's life.

Having said that, there must be support groups or action groups for others, like myself, who have fallen through the cracks of a system not designed for or catered to meet our individual needs or some kind of advocacy service...

I feel this needs to be my next step...or advertising for such a psychologist as you speak of.

I'm terribly sorry to hear about your situation. It absolutely sounds completely needlessly bureaucratic discriminatory and outrageous not to mention devastating. I'm currently reading a book that's about a survey of adults on the spectrum in Australia and some of it makes your experience resonate w/me. It's really saying something that even in a country that has a universal health care system like yours (the US alone among rich countries does not have one) these sorts of Ableist practices are happening to you despite your obvious need for disability support. I'm afraid this won't be of any comfort to you but the situation in the States is actually worse only partly due to our for profit health care system. ASD is massively under-diagnosed especially among women and non-white communities and it really depends on which of the 50 states you live in as to how good social services are for people on the spectrum or the disabled in general as well as getting a diagnosis and qualifying for such services in the first place. If you are very poor as I am government insurance in many states covers the cost of the diagnosis but for most people the prices are similar to what you are referring to from Australia. And most households simply can't afford the cost of that if they have to pay out of pocket or a large deductible (an often high fee you have to pay before your private health insurance starts covering the cost). I wish I had better news but I wish you all the best of success in your struggle!