Tools Without Instructions: The Missing Manual for ADHD Management
Izabella Risteski | Research study presented for the AADPA's 7th Annual ADHD Conference held in Brisbane (27 – 28 July 2024)
Stimulant Induced Rhabdomyolysis
Rhabdomyolysis is a life-threatening condition in which damaged muscle tissue releases proteins and electrolytes into the bloodstream. This can result in muscle necrosis and a toxic buildup of muscle breakdown products, potentially causing kidney damage.
Background
My personal experience with an ADHD diagnosis, led me to observe a pronounced gap in the management of ADHD, particularly in the context of psychiatric assessments that often leave patients struggling to grapple with self-regulation, at the forefront of the management of their executive dysfunction. Often providing the tools, without the instructions. This lack of comprehensive support, subsequently contributed to my development of stimulant induced rhabdomyolysis at 22 years old.
Aims
The objective of this study is to explore the firsthand experiences encountered by individuals with ADHD, with a focus on identifying patterns or common narratives related to their ADHD diagnosis. The aim is to pinpoint the areas requiring support, in an effort to enhance the overall collaborative care and management of ADHD.
Method
40 ADHD diagnosed individuals residing in Australia (29 females) between 18 and 65 and over, participated in an online study, sharing their perspectives through an online questionnaire to collect qualitative and quantitative data on their diagnosis experience and assessment challenges.
Results
Findings revealed that 60% of patients reported a sense of insufficient guidance in managing their symptoms effectively post diagnosis, with participants raising concerns about appointments lacking support beyond providing prescriptions.
Additionally, participants identified barriers surrounding diagnostic requests for school reports as evidence, due to issues ranging from abusive parents, ADHD masking effects, and the societal stigma of ADHD not being associated with high academic achievement.
Female participants expressed concerns surrounding being uninformed about the efficacy of ADHD medications during different menstrual phases.
Furthermore, 90% of participants expressed a keen interest in receiving referrals for ADHD coaching, despite 85% noting they did not receive a recommendation for an ADHD coach during their appointment.
Describe your overall experience with your psychiatrist/psychologist in receiving an ADHD diagnosis?
“Part of me felt like an imposter, as I received a diagnosis within the first 40mins of my initial consult.“ (Female, 35-44)
“I wish that I had more time to discuss symptoms and medication in more depth.“ (Male, 25-34)
"I grew skeptical of my diagnosis and eventually got a second diagnosis a year later from another psychiatrist to ease my anxiety that I genuinely had ADHD and it was a much more detailed screening. My main concern from the initial doctor was being prescribed the powerful stimulant medication so easily without much guidance besides telling me what dosage to take. No mention of the potential side effects or potential dangers or harm the drug could have on you if abused especially since it is highly addictive or even mentioning other forms of ADHD treatments such as CBT to incorporate alongside taking medication. My second psychiatrist did all that, referring me to a ADHD Psychologist to help me with CBT and other forms of organisational strategies. The second psychiatrist also made sure to check my blood pressure levels and heart rate before prescribing my medication which the first psychiatrist did not do." (Male, 18-24)
"It honestly felt like they were guessing. I have been to many different psychologists/psychiatrists since I was a teenager, and they had just ran out of ideas of why my depression kept phasing into anxiety. Then they put me on dextroamphetamine and it made me much more competent at everyday life. I was getting compliments on my technique and focus from my judo coach, attention from women I wasn’t getting before. However I stopped the medication a month or two in as I felt I was losing connection with people, my empathy was non existent and I would have no interest in my friends telling me stories about their day. Went back to the psychologist and it was just dropped, never followed up on." (Male, 35-44)
"They asked me to fill out a questions sheet relating to ADHD beforehand and then to send it to them. During the appointment I gave my account and experiences when when prompted by the psychiatrist. I was then diagnosed with ADHD in the same session however it was a bit disappointing since the psychiatrist didn’t really go into my experiences but just accepted my accounts and came to her own interpretation without any back and forth between us - it was me dumping a ton of information and her quietly diagnosing me, which don’t feel very thorough." (Male, 18-24)
"I saw a psychologist who did the assessment for ADHD, as well as interviews with my family and some other tests followed up with a report - this part took about 6 months and was expensive. Now I have a referral from my GP and trying to find a psychiatrist who is accepting patients and will accept me. This part is so hard, there is no where to go for info and and I am told the wait time is months again even if I am accepted - it just feels like more than I can follow up on - it should not be so hard to get help." (Female, 45-54)
"It was a very pleasant experience, I was never made to feel uncomfortable or like I was not heard. My doctor was very kind, patient and most of all understanding and validating." (Female, 25-34)
"Caring, empathetic, acknowledged my trauma and even apologised that I had to go through what I have. Never makes me feel like a burden. If I'm struggling I get called the same day to be checked on. This has been a life changing diagnosis for me and knowing I have a psychiatrist that is there for me and not just money, means more than I could ever express" (Female, 35-44)
"My experience with my psychiatrist/psychologist during the diagnostic process was somewhat challenging. While I acknowledge the complexities involved in diagnosing ADHD, I felt that there was a significant gap in communication and understanding. The sessions often seemed rushed, and I struggled to fully convey my experiences and concerns. Additionally, there was a lack of personalised attention, which left me feeling somewhat unsupported throughout the process. Despite these difficulties, I understand the constraints that professionals might face in their roles. However, I believe there is room for improvement, especially in terms of patient-psychiatrist/psychologist engagement and communication." (Female, 18-24)
Participants who reported experiencing issues when providing evidence for their ADHD diagnosis were asked to describe these challenges
“My school reports were exemplary and did not provide any evidence to show that I had ADHD (as I was highly motivated to do well). I masked many of my struggles and worked super hard to excel academically. I also knew how to play the game and be a good student, which made it even harder for teachers to see my struggles (I basically did not allow anyone to see my struggles if I could help it).“ (Female, 35-44)
“No school records. Limited character evidence due to most people who know me not understanding what ADHD is. Parents unwilling/unable to attend session.” (Female, 35-44)
“I had very limited childhood reports, and the ones I did have overall weren't very clear in depicting ADHD traits. Post diagnosis and commencement of medication, I was then given the DIVA questionnaire to complete which was confusing as was given after diagnosis.” (Female, 35-44)
“I have a broken relationship with my mother and only lived with my father for a few years as a teenager before moving out of home. Finding childhood evidence was really hard and required some very difficult conversations. I didn’t have school reports but was nervous because they wouldn’t have supported my diagnosis anyway. I masked all way through school and no one ever flagged any symptoms. My mother also had a hard time at first reporting on evidence of symptoms pre 12yo until I really educated her about the complexities of how ADHD symptoms can show.” (Female, 45-54)
“Requesting school reports was difficult as I do not have a good relationship with my parents who have my reports. There with them, there is a hostile & abusive environment. My grades were good as a result of masking effects.” (Female, 25-34)
“It was hard to find my school reports or to get my workplace to write something for me. I have changed docs many times too so those were hard.” (Female, 25-34)
Participants who indicated they did not receive adequate guidance to manage ADHD effectively post diagnosis were asked to describe what guidance they felt was missing
“I was given tablets and that was all. When I asked for coaching/therapy they said ‘we don’t offer that, you’ll need to go elsewhere.” (Female, 25-34)
“I was unaware of the menstrual phases and ADHD medication being less effective.“ (Female, 25-34)
“There was not really any guidance aside from prescription to medication, essentially just felt like I was just using her to receive a medication with some tips on the dosage and time to take it and nothing else.” (Male, 18-24)
"I was just medicated, no suggestions of therapies to help process the grief of struggling through life undiagnosed, or how to better cope once medicated or how to have added support with supplements or support groups… needs to be so much more then medication especially when diagnosed later in life." (Female, 35-44)
"I have learned about ADHD mostly on my own. Psychiatrists don't have time to hand hold you through it. Newly diagnosed people should get free appointments with psychologists trained in ADHD." (Female, 35-44)
"I left not knowing ADHD had types, No information, no advice, no further support other than medication." (Female, 45-54)
"I had multiple medications that made me ill I was then told there was nothing else and I just had to learn to manage it and was given no guidance on that." (Female, 18-24)
"I would like for my psych to be able to actually listen to me and listen to my concerns maybe help me with strategies. As opposed to just handing out medication and telling me to take it. Even though I’m more focused now I still have problems especially emotional ones which could be due to the fact that I was diagnosed later in life. I don’t feel like I receive the same support mentally." (Female, 25-34)
"I would have liked more time to ask more specific questions about symptoms and how to manage them independent of medication." (Male, 25-34)
"Whilst my experience was quite good (and with full disclosure, I am now a qualified ADHD coach), I did feel like I needed to have done my own research in asking all of the questions. I feel like someone with less motivation or the means to do so would not have had the same experience and would probably have felt overwhelmed and not sure of what to ask. What was missing was the time taken to explain and go through the non-pharmacological strategies that I could undertake in combination with the medication that he was prescribing. He went through in detail about the medication and side effects (as that was what I was asking about) and only briefly mentioned the lifestyle changes and did not really mention the talk therapy options, such as an ADHD coach or a therapist... It would have been good for him to briefly mention and if I was interested in finding out more, and to refer me to someone (like an ADHD coach) who could take me through those options and explain it in detail (given his busy schedule and time constraints) A partnering model between diagnosing clinicians and ADHD coaches would be ideal here as part of a holistic approach to diagnosing and managing ADHD, post-diagnosis." (Female, 35-44)
"Greater understanding of the medication, & more about how my brain works, reputable sources of info, how management will work over the longer term. The potential for food related issues, especially loss appetite, the impact of under-eating, especially increased anxiety & mood fluctuations, sleep problems." (Female, 55-64)
"I was not a typical hyper active ADHD person, I was an adult who was more reserved and neurotic. I get the diagnosis session was rushed, I was used to CBT tools from previous sessions dealing with depression & anxiety, but given no tools or behaviour expectations after the session other than 'take the medication'." (Male, 35-44)
"Following the diagnosis of ADHD, the guidance that felt notably absent, which would have significantly aided in managing the condition more effectively, included a comprehensive, personalised management plan. Such a plan ideally would encompass not only medication management but also behavioural strategies, lifestyle adjustments, and coping mechanisms tailored to my specific needs and challenges. Additionally, there seemed to be a lack of information on available support systems, such as counselling services, support groups, or educational workshops that could offer further assistance and community understanding. Access to resources on how to navigate daily tasks and long-term goals, considering ADHD, was also limited. Practical advice on time management, organisation, and prioritising tasks would have been invaluable. Furthermore, guidance on how to communicate my needs and challenges to family, friends, and employers to foster a supportive environment was missing. Overall, a more holistic and integrated approach to ADHD management post-diagnosis, encompassing both medical and non-medical interventions, would have greatly assisted in navigating life with ADHD more effectively." (Female, 18-24)
Conclusion
Guiding ADHD assessment processes in accordance with a patient-centric framework can elevate patient support, simultaneously mitigating potential pitfalls associated with unmet needs & stigmatisation. As previously supported, integrating a multidisciplinary approach that offers patients access to additional resources, as demonstrated by referrals to ADHD coaching, can enhance the efficacy of the long-term management of ADHD symptoms.
Recommendations
Given the inherent nature of ADHD, which often leaves patients struggling with self-regulation at the forefront of their executive dysfunction management, this paper recommends integrating a patient-centric framework during ADHD diagnostic consultations.
These recommendations aim to enhance the support and management of ADHD by focusing on a more holistic and patient-centric approach, thus improving the overall collaborative care of ADHD.
Patient-Centric Framework:
Increased Guidance and Holistic Support:
Participants expressed a need for holistic support beyond medication, including ADHD education and tailored behavioural management to improve mental well-being and address issues related to late diagnosis.
Referral to ADHD Coaches:
With the growing demand for ADHD coaches, it is imperative that clinicians provide recommendations or directory listings to assist newly diagnosed patients. While clinicians may have limited capacity to assist in overall ADHD management, addressing underlying behavioural issues and emotional challenges, especially for those receiving late diagnoses, is crucial.
Comprehensive Consultations:
Patients' concerns should be fully addressed during consultations, ensuring appointments do not feel rushed or time-constrained. Follow-up appointments should be prioritised and cover more than just medication dosage adjustments. For female participants, it is important to advise patients about the potential reduced efficacy of stimulant medication during different menstrual phases.
Reduced Emphasis on Academic Evidence:
Clinicians should minimise the need for patients to provide school reports or academic evidence during diagnostic consultations. Considering the stigmas surrounding ADHD and academic performance, and the barriers to obtaining evidence, including family abuse or masking effects, this requirement can be counterproductive.
