Nobody thought my application to the NDIS would be successful. Not the psychiatrist who first saw me, nor the clinical psychologist who went through hours of diagnostic testing and Q&A sessions with me and, ultimately, gave me my Autism diagnosis.
But the NDIS did approve my application, and I now have two years’ worth of funding to put towards much-needed supports. The reason they approved me is simple: Autism is a disability.
Most health professionals know very little about Autism
The reason the health professionals who diagnosed me – health professionals who specialise in working with adults with Autism – told me I shouldn’t bother with an NDIS application is also simple, and also incredibly alarming: I didn’t seem Autistic enough.
One or both of the psychiatrist and clinical psychologist made comments noting that I was:
- Able to make eye contact
- Very communicative and articulate
- Able to live on my own
In a book I’m reading, Understanding Autism in Adults and Aging Adults 2nd Edition: Updated in 2021 with New Insights for Improving Diagnosis and Quality of Life, Theresa Regan, a clinical psychologist from the United States who specialises in Neuropsychology and Rehabilitation Psychology notes:
Ultimately, my assessment for Autism showed that I “met the criteria for a diagnosis of ASD (DSM; 299.00, F84) at Level 1…without Intellectual Impairment and without Language Impairment…a lifelong condition that is permanent.”
If you jump online and do a search for Autism at level 1, you will, unfortunately, find all sorts of information that isn’t true.
What level 1 very simply means, is that I do not need the same level of support as someone deemed to be at level 3 – a diagnosis that means the person is intellectually impaired, and likely requires support in areas that include help with eating, bathing etc.
At differing levels some people might need to continue to live with their parents or with a carer. They might struggle to leave the house at all. They might need someone to take control of tasks like paying bills or booking medical appointments.
To suggest level 1 is “mild”, as some websites do, is a complete injustice to the struggles and complications inherent in Autism of any form. Remember, there is no ‘cure’ for Autism, it is not a disease that you can recover from. It is a neurodevelopmental disability caused by physical differences in the brain and nervous system, and, if an Autistic person wants to lead the best life they can, early intervention and support is their best chance of doing so.
What the levels built into ‘The American Psychiatric Association’s Diagnostic and Statistical Manual’ (the fifth edition of ‘the DSM’ published in 2022 is also used in Australia to help diagnosis a person with Autism) tell us, is that there is no one size fits all when it comes to Autism. That’s why it’s considered a spectrum.
Diagnostic tests undertaken in determining my diagnosis
To provide a more complete picture of why the NDIS approved my application despite the caution proffered by the health professionals who diagnosed me, I think it’s helpful to outline some of the clinical observations and self-reported testing I undertook. So, here goes. No secrets now!
Glenn’s score of 28 is well above the cut-off score of 14 that indicates a full assessment is warranted.
Using the ADOS-2 algorithm Glenn comes up as on the Autism spectrum. That is he has features of Autism but has learned strategies to compensate – this is particularly so in the area of communication. It is important to note that this measure is not diagnostic by itself and forms part of a protocol with additional questionnaires and observation.
The Adult Repetitive Behaviour Questionnaire -2A (RBQ-2A)
There were some repetitive behaviours noted throughout the assessment (constant fiddling with paper) and movement even while seated. Glenn also described many other repetitive behaviours that others have remarked upon.
Self-Report Camouflaging of Autistic Traits Questionnaire (CAT-Q)
Glenn endorsed many items on this scale to indicate that he has spent his whole life finding ways to manage social interactions. He described finding at quite a young age that it was better for him to remain quiet and nod/smile while people were talking, he learned to observe others closely and copy their body language and facial expression, and to use something close to a script when engaging in conversations that are social rather than functional. It is likely that these behaviours have allowed Glenn to function well in many contexts but are likely also to take a toll making him feel exhausted and depleted after a time.
Despite the clinical psychologist who assessed me recommending I would “benefit from working with either an Occupational Therapist or a psychologist to learn strategies to help with managing this (‘this’ being Autistic burnout and resultant mental health issues), she still told me, more than once, that she didn’t believe I would be successful with my NDIS application.
But then there was one…
Just when I had all but given up on the idea of applying to the NDIS, I arranged to meet with an occupational therapist who specialised in working with Autistic people, just as the clinical psychologist who diagnosed me had suggested.
Prior to the first of what would be two appointments, I asked the OT if she believed it was worth me submitting an application for NDIS funding. She advised that she knew of other Autistic people with a level 1 diagnosis who had been successful. After reading the complete Autism assessment report on me, she said she would write a letter of support. It was this letter – in addition to the report documenting my diagnosis – that went a long way towards securing my successful NDIS outcome.
What follows are some of the outcomes of assessments undertaken with the OT at the end of 2022.
WHODAS 2.0 – World Health Organization Disability Assessment Schedule 2.0
A score between 0-100 is produced where 0 = no disability and 100 = full disability. Glenn’s score was 38.02% (Moderate Disability) with severe disability scores in ‘Participation in Society’ and Life Activities categories.
Behavior Rating Inventory of Executive Function® Adult Version (BRIEF-A)
Glenn’s self-report suggests significant difficulties with executive functioning. Glenn’s overall score was elevated and in the 99th percentile; that is, Glenn’s executive function overall is worse than more than 99% of other people his age.
Depression, Anxiety, Stress Scale (DASS-42)
The DASS is a 42-item self-report instrument designed to measure the three related negative emotional states of depression, anxiety and tension / stress. Glenn scored in the extremely severe range for depression (31 out of maximum score of 42), the severe range for anxiety (16 out of maximum score of 42) and the upper end of the severe range for stress (33 out of maximum score of 42). Based on Glenn’s self-report his is likely to be the result of ASD / autistic burnout rather than a primary depressive or anxiety disorder.
When I say “But then there was one…” what I mean to say is, it was kinda like two
At the beginning of 2023 (I hope you’re getting the impression that none of this happened quickly, because it didn’t), I decided to have some appointments with a clinical psychologist, recommended to me by the psychiatrist who first saw me.
So, deep breath…I had, before booking the appointments I had with the OT, undergone a follow-up appointment with the psychiatrist. This was mainly to close the loop, spend more money I didn’t have, and see if he had any further advice or recommendations. I thought, that after he had read the report documenting my Autism diagnosis, he might have some further psychiatrist-type insights to offer.
This, however, turned out to be the appointment at which he said he didn’t believe I would be successful with any application to the NDIS because, you know, I could feed and clothe myself. (He didn’t actually word it like that, I’m saying it like that because, in hindsight, he may as well have.)
He did suggest that I might have ADHD though (another bombshell), which was why he referred me on to the new psychologist – for something called psychometric testing.
During the first two of three appointments I underwent yet more assessments:
- Woodcock Johnson Fourth Edition – Tests of Cognitive Abilities (WJ IV COG)
- The Diagnostic Interview for ADHD in adults, Third Edition (DIVA-5)
- Behavior Rating Inventory of Executive Function, Adult (BRIEF-A) – Self-Report Form
- Adult ADHD Self-Report Scale (ASRS)
- Depression, Anxiety and Stress Scale, Short Form (DASS21)
At the third appointment, the psychologist, who specialises not only in working with adults with ADHD, but also those with Autism, gave me the results.
Given the pattern of results summarised in the current report, despite Glenn’s experience of some symptoms of inattention and hyperactivity, it is my clinical opinion that Glenn does not meet the criteria for attention-deficit / hyperactivity disorder (ADHD). Glenn’s symptoms may be best understood in the context of his diagnosis of Autism spectrum disorder (Autism), which manifests in his hypersensitivity to environmental stimuli to the point of distraction, particularly during conversations, and in the context of his executive dysfunction. These manifests as challenges monitoring one’s behaviour and managing impulses, including those of interrupting and talking excessively.
Furthermore, given the results of the WJ IV COG, it is also likely that, through a full cognitive assessment, Glenn would obtain a full scale IQ in the very high range. This means that Glenn is highly intelligent, and he also shows a talent with quantitative reasoning. Glenn’s high intellectual functioning may further help to explain his ADHD-like symptoms, which may be associated with an intense drive to understand, question, and search for consistency, the experience of interpersonal impatience, the experience of intense emotions accompanied by strong physical sensations, and the increased need for movement.
Finally, Glenn’s experience of repetitive behaviours, such as aligning, ordering, checking, and repetitive cleaning, are not associated with significant anxiety or intrusive thoughts. Instead, they seem to provide Glenn with a sense of satisfaction and relaxation. For this reason, it is unlikely that these behaviours are the manifestation of Obsessive Compulsive Disorder (OCD), rather, they are better explained by the desire for order characteristic of Autism.
I share this with you not to brag about my giant brain 😆 (although that is a fringe benefit!) but rather to highlight how vitally important it is to get a diagnosis (if you’re able – I understand that there are many reasons that might not be possible, something else I’ll be writing about in the not-too-distant future) and, most significant of all, to get the correct diagnosis.
I have had it explained to me, and shown to me, in the nifty diagram below, that there is overlap between Autism, ADHD, and OCD that makes it challenging to diagnose one condition over the other for even the most experienced and dedicated health professional.
For me, not only did these appointments with the psychologist who determined I didn’t have ADHD affirm my own suspicions, they further spurred me on to make my application to the NDIS – as did the psychologist with her parting words: “That’s a good idea, it’s what you deserve.”
Why bother applying for NDIS funding if it’s so much work to get it?
The simple reason I went through all this is money. Health professionals charge high fees – higher than most of us can afford. Yet treatment, ongoing treatment, is what I need.
From the ‘recommendations’ section of my ADHD assessment:
- Continue accessing support from your occupational therapist to gain support to achieve goals related to your sensory processing, restricted/repetitive patterns of behaviour, and/or executive functioning.
- Access to support from a psychologist may also aid with addressing symptoms of depression, anxiety, and stress, and to address the distress associated with change.
In addition to those two points, is the significant issue of me recovering from Autistic burnout, and funding for health professionals makes up a substantial proportion of the assistance I received. This week, I (finally) had my first appointment with a clinical psychologist who specialises in working with adults with Autism. Next week, it will be the turn of the OT.
I will continue working with these health professionals for as long as it takes for me to come down from the anxiety-riddled extremes of my current burnout – something I had no chance of being able to do without NDIS support.
My support plan also allows me to purchase something called assistive technology, a term used for a variety of devices that help people with disabilities perform or adapt in their daily lives.
Just some of the devices I am waiting for the courier to ferry to my door include fidget toys, plush blankets, and noise-cancelling headphones.
Finally, I am now also able to access support workers, people who could assist me in the house and yard with activities I am struggling to complete because of burnout.
This is all game-changing support for me, just a window into the types of support I should have been receiving my entire life.
The timing also couldn’t be better (although a few months earlier would have been nice!) as Centrelink has withdrawn the payments I wrote about a couple of weeks ago. (I ended up receiving a grand total of $800 between January and June.) Something about my wife and I having too many assets. It clearly doesn’t matter to them that I had to quit my job and can now only tap out a story a week for this little non-paying blog.
Despite that road bump, it should be clear by now that I’m an advocate of what the NDIS can do for Autistic people. That’s not to say everything is perfect – it is a bureaucracy after all, and so it comes with all the usual bureaucratic trimmings.
But, if you do receive a diagnosis that tells you you’re Autistic, no matter what anyone else says, even if they’re a respected health professional who believes you have next to no chance of having your application approved, I can’t stress more ardently my own belief that you should apply for funding.
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