A submission to the Australian Senate Enquiry into ADHD
I submitted the following on June 8th 2023 to the Senate enquiry into ADHD. To their credit they are looking to learn from the experiences of people with ADHD, people for care for them, clinicians treating them and everyone else involved. I hope some great changes in clinician and community knowledge development come from it :)
I am writing in response to the call for submissions to the enquiry into ADHD. I have a sub-clinical level of ADHD, ie- my psychiatrist told me that, after many years of various symptom management techniques, I am adequately managing my symptoms and functioning well enough to not require clinical support from my psychiatrist. This didn’t happen right away! I was diagnosed as a child in the 90’s then re-diagnosed at age 16 and I started medication in 2004 when I was not performing adequately in school (I had failed year 12 the year before and was repeating year 12). The medication was effective in improving my grades, but I did not feel ‘myself’, I felt wired, focussed and not able to be creative and spontaneous. My creativity dwindled, and I felt somewhat robotic.
I did very well in my studies at university, although I discovered that my most effective learning styles were social, kinaesthetic and visual. The in-person attendance of university in those days allowed for me to thrive, I am concerned about the quality of the education people are getting with the option to attend less and less in this current environment.
After university, I discovered yoga! I had kept my body busy with team sports throughout my life, and after a spinal injury, I had to find an alternative means of exercise that was therapeutic for my pain and stiffness. I started yoga to #getflexible, but I learnt much more than that.
At my first yoga class, I recall the first moment that I was guided through stillness.. for the first time in my life. I was exhausted, sweating and throbbing from the exercise that led up to the stillness.. then the teacher asked us to remain still from a disciplined perspective, but she guided us to notice other features of our body that were still throbbing, pumping, dripping, shaking, rising & falling. I was still, because I had a wealth of interesting things to focus on that were actually not still at all!
This experience released just enough dopamine for me to want to come back and challenge myself to try being still again. Over the next few years I developed a deep understanding of yoga, meditation and its principles. It turns out that practicing a non-judgemental observation of the present moment, starting with body, and learning over time to move into breath, mind and spirit was actually a wonderful way to manage a mind and body with ADHD.
Over time I withdrew from my medication on several occasions, attempting alternative methods for managing the symptoms and thriving at work and play. My first psychiatrist was not supportive of this idea (which I will discuss later on), and I found one that would be reluctantly open to my idea of managing myself off medication with their guidance and support. Eventually I found a level of mindfulness practice and understanding that helped me to not only survive, but throve with my ADHD and without medication.
After over a decade thriving in my mechanical engineering career, I realised that I really wanted to improve the lives of people directly on a daily basis, instead of indirectly through leadership roles in a big oil company. I had been off medication for 1 year when I chose to change my career path and start teaching yoga; I would inspire others to try the same pathway I took, how exciting!
I am now a Mindfulness, Movement & Meditation Teacher. I do this as my full-time profession. I teach and coach mindfulness, meditation and yoga in its different forms to businesses (employee wellbeing), individuals (mostly adults with ADHD or difficulty managing stress), groups (regular studio yoga classes). I support people regardless of their choice to use medication or not and agree with the research that shows that if medication is used, mindfulness is a strong compliment to improve an individuals management of their ADHD symptoms.
I write this submission from the perspective of lived experience with ADHD and also the knowledge gained from helping clients of mine who I have supported over the past 2 years.
(a) Adequacy of access to ADHD diagnosis
No comments.
(b)Adequacy of supports after an ADHD assessment
There is currently no structured guidance for people who want to self-manage their ADHD symptoms or at least want to support a medicated approach to managing them.
My experience of the pathway is diagnosis, medication, see you in 6 months for repeats, we’ll make the appointment as short as possible to save you money.
Mindfulness is the non-judgemental observation of the present moment. For example; as you read this, notice that your body is also breathing, expanding and contracting, adjusting.. your focus can shift from laser like accuracy (right thumb, to the exclusion of all other sensations) to broad floodlight focus (the words on this page, your breath, a thought about how strange this is). Whilst we notice these aspects of the present moment experience, our mind often throws a healthy dose of judgement or opinion over the facts that our senses observe. Learning to observe those opinions are something that can be separated from the facts that we notice can have a profound impact on a person’s experience and joy of noticing the present moment.
“Since poor attentional functioning is a core symptom cluster of ADHD (American Psychiatric Association, 2013) and executive functioning deficits in ADHD are common (Barkley, 1997; Boonstra, Oosterlaan, Sergeant, & Buitelaar, 2005; Hervey, Epstein, & Curry, 2004), any treatments that purportedly strengthen these processes seem appropriate for ADHD.” [Mindfulness Meditation Training for ADHD in Adulthood https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403871/ Dr John Mitchell, Dr Lidia Zylowska, Dr Scott Kollins 2015]
Recommendations:
(b.1) We need a single place with authority that can give people the full, un-biased spectrum of options they have available to them.
Someone like ADHD WA should be providing:
(b.2) A roadmap pre and post diagnosis for people who suspect they have ADHD
Including how they can manage the symptoms they observe and their day-to-day satisfaction with them through mindfulness techniques.
Where to go to get mindfulness, yoga or meditation support when they are unable to get the progress they would like from a regular yoga school, app’s, books, online support. There are teachers and coaches who specialise in communicating this challenging concept and its practices, to people with ADHD symptoms, eg- who don’t like to sit still (you can do your first meditation without sitting still).
(b.3) Free or low-fee forums for people like me (mindfulness specialists) to educate all levels of the ADHD support network (Teachers/Schools, Parents, GP’s, Therapists, Psychologists, Psychiatrists).
Specifically focussing on GP’s (the first referral) and Psychiatrists (the regular treatment). These people have a responsibility to the patient to provide a full spectrum of treatment options so that the person can make an informed choice about the pathway they want to take.
(c) Attitudes of treating practitioners
It is my experience that the price of psychiatrist appointments meant that both the professional and the patient are trying to minimise the time in that appointment. My appointments with my first psychiatrists were typically just enough time for them to check my weight, ask if “everything is still OK?”, call the prescription line during the appointment, state my numbers and say goodbye.
I tried raising the idea of managing my symptoms with less dependence on medication and the response I got was that, “my specialty is prescribing medication, if you want to take on other treatments methods, then you are welcome to… most people grow out of it in their 30’s anyway”
I chose to not return to this psychiatrist and found one that was slightly more open-minded about alternative methods to medication but was still unable to provide any support or guidance on them.
I relied on books and research from the USA to apply a mindfulness management method to my experience of ADHD.
Recommendation:
(b.3) As above. Education for all Psychiatrists and GP’s on the full spectrum of treatments available to manage ADHD, including Mindfulness and exposure the lived experience stories like mine.
(d) Impact of gender bias
Two of my clients being coached in a mindfulness approach to managing ADHD explained how their whole lives they were told they were just a “ditsy-blonde” or an “air-head”, and really had no understanding that their challenges in life aligned so well with a disorder with a name ADHD. Their diagnosis enabled them to finally find management methods for their “ditsy-ness”.
I mean no offence by suggesting this; we don’t have a similar term for males with similar symptoms to a “ditsy-blonde”. Males like that are (in my opinion) more likely to be referred to a professional for a diagnosis than females.
Recommendation:
(d.1) Funding is required for an unbiased central organisation (like ADHD WA) to advocate for better community and professional knowledge about the gender diversity of ADHD diagnosis.
(e) Access to & cost of medication
When I was using medication in university, it was considered a “party drug” or “study drug”. If someone was both successful and on medication, then they were getting an “unfair advantage”!
Tis led me to withhold my diagnosis and treatment methods on a number of future occasions out of fear of being judged as having an unfair advantage.
Recommendation:
(e.1) Funding is required for an unbiased central organisation (like ADHD WA) to advocate for better community understanding and acceptance of people on medication and using other treatment methods for ADHD.
(f) ADHD on the NDIS
Mindfulness enables coachability! Have you ever heard some great advice, wanted to apply it, but then when it came to the moment, you had forgotten, or nothing prompted you to remember the advice and apply it.
People who are coachable, feel the circumstances in the present moment that align with those discussed with their coach (or other advisor / professional supporter), and have the presence of mind to apply the advice! Without that presence of mind, no changes happen. This presence of mind can be trained, practiced, improved. This presence of mind is called mindfulness.
I wish that my services of helping people to understand how to apply and evolve mindfulness practices with prevalent symptoms of ADHD were accessible to all, regardless of their income level.
When my brother-in-law obtained a second diagnosis and was able to make his ADHD diagnosis secondary, he had access to the NDIS. On the scheme he got access to a coach that was able to support him with many strategies that were targeted towards his ADHD and he has been thriving ever since. It seems a shame that he only has access to this coaching because he had another diagnosis.
Recommendation:
(f.1) Put ADHD on the NDIS as a primary disability.
(g) Interaction between Commonwealth, State & Local Govt
No comment
(h) Funding for research
No comment
(i) Social & Economic Impact of ADHD
As a bachelor qualified Mechanical Engineer (with honors), with 2 years of experience in the industry, I was shocked when I was told in a medical assessment for a new job from a GP “I cannot confirm that your ADHD diagnosis and this daily medication affect your ability to fulfill this role and to safely walk around our site. Please obtain a letter from your psychiatrist to confirm you can perform your role here safely and efficiently.”
I ended up getting one from my co-prescribing GP, and this experience made me hesitate to share my diagnosis in the future.
My driver’s license is linked to my medication, as when I filled out the state forms, any medication must be approved by your doctor. But from the way it was filled out, somehow it is now understood that my medication was essential to my ability to safely operate a vehicle. I was and still am, able to operate a vehicle safely without medication. I had several experiences with police officers and once at my motorcycle license test where the assessing person asked me “have you taken your pills?”.
Recommendation:
(e.1) as above. Funding is required for an unbiased central organisation (like ADHD WA) to advocate for better community understanding and acceptance of people on medication and using other treatment methods for ADHD.
(j) Diagnosis guidelines
No comment
(k) International best practices
There is some wonderful research being done in America into the use of meditation and mindfulness to help people deal with challenges in the way their brain presents to the world to them. “Studies of mindfulness in non-ADHD samples support its application to ADHD, particularly based on the purported impact of mindfulness training on attention regulation, executive functioning, and emotion regulation.” [Mindfulness Meditation Training for ADHD in Adulthood https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403871/ Dr John Mitchell, Dr Lidia Zylowska, Dr Scott Kollins 2015]
Given that our society has progressed into a place where our attention is for sale, I would like to see research into whether that progression is directly resulting in more people experiencing the reinforcement of neural pathways associated with the symptoms of ADHD.
Society is spending more time on social media platforms like Tik Tok & Instagram. These are designed to take our conscious control of our attention away from us to ‘improve our experience on their platform’ and keep us on there longer. I hypothesise that this reinforces our neural pathways that make us dependent on stimulus like that found on Instagram and Tik Tok (uncontrolled, immediate, short, always changing, random) through neuroplasticity. The reinforcement of that process can result in more ADHD symptoms becoming prevalent in people with a hereditary tendency towards ADHD, and them steadily becoming less capable of managing their own attention and less functional in society. This could even be contributing to the reason for a rise in the diagnosis of ADHD in the last decade.
Imagine the power of research into this area? We could discover that certain habits and services are actually hazardous to people with a tendency towards ADHD. Like we know excessive consumption of chocolate bars is bad for people with diabetes, one day it might be equally obvious that social media, YouTube and other similar stimulus are hazardous for people with ADHD.
