Autism and ADHD assessments (part 2)

This post is a follow-up to Autism Assessments (part 1).

After a consultation with a clinical psychologist a bit over 2 years ago, resulting in me self-identifying as autistic, which made me feel better about my various neuro-atypical behaviours and continuing to seek support and information surrounding neurodiversity, I started to realise that autism that may not be the only way I’m neurodivergent, and I sought out additional details about how my brain might work.

For years I’ve struggled with concentration and focus, except when it comes to things that I really love doing, which I can hyperfocus on for hours on end, to the point that I lose track of time and forget to eat or sleep, sometimes. I’ve never been able to reliably time-sheet my work as part of my job, because keeping track of how long I’ve spent on a task is an exercise in futility unless I bog myself down in processes enforced by technology to remind me to check in every 15 minutes with a status update.

The above, and a bunch of other little things, made me start to wonder if I also had ADHD. ADHD and Autism Spectrum Disorder (ASD) have quite a lot in common, and many people are diagnosed with both. After speaking to a large quantity of friends who also have ADHD (some of whom also have autism), I started to wonder if this was me too.

Further to this, because of Melbourne’s COVID-19-related lockdowns, I spent a lot of time at home with my partner and nobody else, to the point that I think I lost a bunch of resilience I’d built up to dealing with situations like overwhelming sensory input, to the point that, in the last 12 months, I’ve experienced what I’ve identified as at least two meltdowns, one at home, and one at a shopping centre, where I got so overwhelmed with noise, imagery, and thoughts, that I had to sit quietly for almost an hour before I could calm down enough to interact with the world again. Meltdowns are a classic autism trait.

When I sought information about autism, I decided that a formal diagnosis wouldn’t be very useful for me, because even if I did end up with a positive diagnosis, I’d almost certainly be diagnosed as “low support needs” (this used to be known as “high functioning autism”, but that’s not a good term for a bunch of reasons), which would mean that the few benefits I might get from a formal diagnosis, such as government support as part of the NDIS, would likely not be useful or applicable to me, so it was just as beneficial for me to self-identify as autistic and seek support in the form of therapy to help manage various autism traits.

But, once I started thinking that I might also have ADHD, and after having tried all manner of mindfulness techniques, organisational processes, and other things in order to help me form some constructive routines and focus on things in my day-to-day life, none of which stuck reliably, I realised that if I do have ADHD, one of the few options that may remain available to me were to try some stimulant medication to help me focus. And the thing about stimulant medication, is that it’s not available unless you have a formal ADHD diagnosis.

So, after much deliberation, I started the long, slow process of seeking a diagnosis. I started by talking to my GP (general practitioner) about this, and they referred me to a psychiatrist who could assess me for ADHD. I called this psychiatrist, and they said that they’d seen on the information my GP had sent them that I also identified as autistic, and wanted to make the point that this particular psychiatrist doesn’t have much experience with autism.

I thought about this, and decided that, given ADHD and ASD are often related, and given I already identify as having the latter, seeing somebody who specialises in both is probably in my best interests. A couple of friends of mine highly recommended Dr Marged Goode, who specialises in both ADHD and ASD, so I booked in an appointment. Unfortunately, many clinics that do these assessments have long waiting lists, and this was no exception; I waited over 3 months for my initial appointment.

Now, it’s worth mentioning at this point, as mentioned in my initial blog post, that these assessments are expensive. We’re talking in the ballpark of $1,000, or a little over, for a full assessment of both ADHD and Autism; obviously this makes these inaccessible to a significant portion of the population.

During my first appointment, I spent a couple of hours chatting about my experiences and history, and learning about how Marged thinks about ADHD and Autism, and how their various traits fit together, by way of a diagram she drew on a board. Afterwards, she sent me a large amount of questionnaires that I and my family needed to fill out in order to gather enough information for an assessment.

The paperwork I was given included:

I was required to fill out all of the above questionnaires, while my partner and my parent were asked to fill out slightly altered variants of the AQ, EQ, BRIEF-A, and SRS™-2, and my parent was asked to answer a developmental history questionnaire. It took me an afternoon to answer the almost 800 multiple-choice questions, while my parent and partner had fewer than half that number of questions.

Furthermore, I was asked to dig up any primary school reports for perusal. Marged said that because ADHD is present all our lives, its presence needs to be demonstrated in childhood for a positive diagnosis, and one of the ways to do this is to look at the comments (as opposed to the actual grades) on primary school reports, for things like “day dreams,” “gets distracted,” “has trouble sitting still,” “misses deadlines,” and “has great potential if only they applied themselves.” Basically, anything that suggests inattention or hyperactivity. I personally had a few tell-tale signs in my own reports.

I also opted to sit an IQ test. Now, this isn’t strictly required for a diagnosis (and in many ways, IQ tests are unfit for testing one’s intelligence), but Marged pointed out that often people with autism take longer to process information, and therefore may be perceived as less intelligent than they actually are, and people who aren’t perceived as below average intelligence may actually be somewhat above average, but being held back by their mental processing speed. All this to say, if a test were to suggest that you have a high IQ (and if you are content to believe that an IQ test is an adequate representation of your intelligence) then perhaps you can take some reassurance that if people perceive you as a bit of a slow thinker, it’s not because of your intelligence, but just because you happen to process things a little slowly. So, perhaps not a huge deal, but despite the extra $350 cost, I decided to give it a shot and see what the result was.

I sat the IQ test a week after my initial appointment, and during that meeting I also handed in all the filled out paperwork from myself and my family, and booked the next available appointment, which, unfortunately, was another 2 months away. Prior to my next appointment, Marged would write up a report of her findings, that could be used as evidence of any diagnosis it revealed. The report was an optional extra (another $200) that I thought would be valuable.

Then I played the waiting game, wondering whether or not I’d get the diagnosis I expected, or whether I’d find out that no, I don’t have ADHD and/or autism, and therefore have to look elsewhere for answers as to why I struggle with various aspects of life (am I “not autistic/ADHD enough”, in the same way that many people feel like they’re “not queer enough” etc.?).

Eventually my appointment came around, and Marged began by putting my mind to rest, flipping to the back of the 18-page report, and read the but that said yes, I’ve been diagnosed with both ADHD and Autism. *Wipes brow with relief*. We then proceeded to walk through the report in order, so I understood what it all meant.

The report detailed the results of my various tests/questionnaires, and what they suggested about me. This included graphs of the results from the answers of me and my family members, and how those results compare to each other, and those of somebody who is considered “neurotypical”. It then went on to summarise the outcomes of these results, and offer some recommendations for subsequent steps for managing my mental health, executive functioning, etc., and finished up with an appendix detailing how the questionnaires and assessments demonstrated that I fit the DSM-5‘s criteria of Autism Spectrum Disorder, and ADHD.

So, I have both ADHD and Autism. My next steps include asking my GP to refer me to a psychiatrist to hopefully try some stimulant medication to help me focus, as well as continuing to try to form solid habits of mindfulness and exercise, and learning more about my autistic/ADHD brain from peers and experts online and in-person.

Feel free to reach out if you’d like more information about the process I went through, or want to talk to me about your own brain, and I’ll do what I can to respond constructively!

Author: mattcen

Linux sysadmin/advocate, @scoutsvic leader, @okfnau, bisexual/polyamorous geek. He/him. Opinions mine. PGP: DB91 CFEF 322D C608 385F 563C 2F88 1AC6 4A16 1033

5 thoughts on “Autism and ADHD assessments (part 2)”

  1. Did you send this specifically to me ?
    I’m guessing you received my email to the DTE Membership when I wrote to them all that I had both XYY and ASD a few years ago.
    I found out I had XYY when I was aged 24 and Aspergers when I was aged 50 even though half of all males who have XYY also are on the Autism Spectrum but I thought my main problems with my thinking were due to the XYY which is also a Spectrum not unlike Autism apart from the fact that XYY also has physical attributes as in double production of testosterone which makes us all male, taller, stronger etc than the average man.
    My Dx was by a psychiatrist named Gilligan, in Glen Iris, he was the only one I could find at that time who gave Autistic assessments and it cost me $600 for 3 visits over 6 weeks, the last was the IQ Test and I scored >170. This IQ Test score was unsurprising because I had already had a similar test when I was aged 14 at Career Guidance after I left High School where I achieved a similar IQ Score.
    The problem I had at age 14 was that Career Guidance told me I should attend University and do applied sciences or anything I wished to do, a ridiculous proposal when one has left high school prior to finishing Form 5, yes I was 14 in Form 5 but that is another story, the fact is that I was a high achiever in maths, science, physics but a dismal failure in both English’s so could not continue to Matriculation, the requirement for University then. As an adult I did take 4 years off work to attend RMIT and achieved my Degree in Mechanical & Manufacturing Engineering as a Mature aged Student.
    I have always had an ever curious mind and therefore have always had a great penchant for knowledge ;- Joined Moorabbin HAM Radio club when I was 12 and built my first transceiver, built my first computer at age 13, rebuilt car engines about the same time just because I could. Fact is I was much more interested in design and building stuff than attending school so this is why my English was so bad in Marks each year, I just had zero interest and was doing cryptic crosswords every day by then anyway so knew I was advanced in English anyway. I was just too immature to realise that I needed English to attend University.
    So as it turned out I started my Electrician’s Apprenticeship at age 14 and finished at age 18 to be told I had to be aged 21 to hold an A Grade Licence even though I had completed all my exams and was as qualified as any other A Grade Electrician. So to learn something different I then did a Carpentry & Joinery Apprenticeship and was lucky enough to find a Builder willing to pay me adult wages all through that second 4 year apprenticeship. After this I stayed with that Builder another 4 years and worked as a Carpenter / Builder in Commercial construction and did well and became a Foreman / Supervisor and earned great wages too. I then had to leave and work as an electrician before ai forgot what I had learned in that apprenticeship or it may have been gone forever and that is what I mainly did for the rest of my working life and history repeated in that I became Manager of the last Contractor I worked for.
    Whilst working and in my 20’s I always did Night Classes in various things just to learn new things like diplomas in Physiology, Human Anatomy, I had to do Digital Electronics because all I knew was Analogue from age 12 at HAM Radio and after that I got an interest in heavy machinery so did a full time 6 month course at Footscray Tech / DECA Heavy Machinery Course at Brooklyn where we learned and achieved all Licences for all Trucks, Earthmoving Machinery, All cranes, EPV’s, Cherry Pickers and how to repair and maintain them, this knowledge was great when I joined DTE and ConFest back in 2000.
    We are similar Matt, I have insomnia and sometimes don’t sleep for 2 or 3 days if I get interested in a long topic and these days at age 65 and in poor health am quite sedentary so am just not tired at all so sleep is a waste of time the way I see it at the moment.
    Tis 3.07 am Matt and this is my 2nd night of no sleep and I really do need some so if you wish to chat and I know not many on the Spectrum like that ( Chatting on the phone ) I think you’re different, you can call me on 0408 300 728.
    Cheers ………. Scouse

  2. Hi Matt,
    I inserted paragraphs in my long post but they have disappeared and it is all one block !

    I’m guessing one has to double space for paragraphs to appear on WordPress as I am trying to show here, let us hope it works.

    Cheers ………………. Scouse

  3. Hey Matt! Great write up. My experience getting a diagnosis was much the same, and it is great to see people write specifically about the process. And that it isn’t accessible. Thanks for sharing!

    1. Hey Jess, sorry, I thought I’d responded to this! Thanks so much for reading and taking the time to comment. Yeah, it’s unfortunate the process is so complex and expensive.

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