Submission - Review of Prescription of ADHD Medication - Anonymous 13 - 5 September 2024

ADHD Panel – September 2024

Written Submission

Introduction:

Awareness of neurodivergence has noticeably increased over the years, resulting in the increase of many individuals seeking the opportunity of assessments. Awareness has  fabricated  symbolic  layers  which  was  further  initiated  multiple  common misconceptions of ADHD, as factual information and research has been interpreted and perceived in antithetical ways. Perhaps a better question to contemplate is, which symptoms are caused by lack of diagnosis, and which co-occur because of the nature of ADHD itself?

There are endless paradoxes to ADHD which is another reason as to why there is contradicting information people come across when researching or understanding the diagnosis.

When people think of the word ADHD, they think of being hyper, chatty, outgoing, extroverts and can't pay attention. ADHD is not how it is known to the outside world. People do not understand or know how it feels for us to be under stimulated, from a brain that will not let you do what it knows it needs to, to then be labelled "lazy" because our symptoms are so misunderstood. ADHD is not when you don't pay attention to anything, but instead it is when you pay attention to everything.

Personally, I am not fond of labelling diagnosis' as "super-powers". It is not a super- power, it is a condition that affects our lives severely, some more than others. It is not about labelling us anything, and calling it a super-power' is just another way of labelling it to sound, what, more appealing? ADHD is part of our personality, part of us who makes us who we are.

Personal  Impact  from  Diagnosis  and  Medication  on  Health  and Wellbeing:

Before my diagnosis, I personally felt like I was simple living in a world that was constantly moving around me, and I was a glitch in the system. Back and forth to therapy sessions, including an extended offering of Cognitive Behavioural Therapy (CBT), which is where I learnt that perhaps there was a possibility that I'm not just weird' for how noticeably different my mind works to others. ADHD has caused me to see myself as different and that this has caused me to be self-conscious and lack confidence about myself, especially professionally. I frequently experience overwhelming emotional response to being criticized or rejected.

The concerns and negative experiences ADHD has on my mental health has been exhausting over the years. I am currently on the journey of learning how to manage this; however, I am still in the process of this. I find it extremely challenging to make decisions, particularly when faced with multiple choices or options when the consequence of the decision is perceived as significant. I will become easily overwhelmed due to the various possibilities and fear of making the wrong choice, which often leads to procrastination, avoidance, indecisiveness and relying on others to make decisions on my behalf. I can become frustrated with others when they don't direct me towards a certain choice.

My diagnosis was for peace of mind and reassurance for myself and for my family, as my parents in particular had always had suspicions. On the other hand, after receiving my diagnosis, I felt like I was going through the different stages of grief. The first stage of grief is denial, which from confirmation of the diagnosis initially provided a sense of relief knowing I had it but then the reality sunk in and I was questioning myself and if I really have it. The second stage is anger, where I felt intense anger at places, people and professionals in my life that misunderstood and did not see the signs earlier and offer the help I know I needed all these years. I felt angry at the fact I could have had a different life if just one person helped and believed in me. The third stage is bargaining, as I was trying anything I could in attempt to help myself cope with symptoms and come to terms with an official diagnosis. I couldn't understand or come to terms with why it wasn't fixing' me. The fourth stage of grief is depression. I felt stuck and lost, thinking about everything that has ever happened in my life and questioning whether it was my ADHD or was it just me. I felt disappear and upset for the life I could have had if only I knew earlier. I felt defeated by this whole new life I had been given and lost on what to do with it and myself. Lastly, the last stage of grief is acceptance, and this is something I am still currently in at the moment. Knowing that medication alone won't fix' me and there is a long road ahead of me, but I am excited to see what this new life and chance will bring. I am still in the process of understanding my diagnosis and learning about myself from the beginning, but it comes with a bittersweet feeling of all the stages merged into this last one.

There is a dark side to ADHD, which is the factors that we don't often hear because it's the parts of us that we either attempt to mask, or simply cannot explain as we are unsure ourselves on the reasoning behind them. The way we sabotage relationships due to our impulsivity and emotional intensity that can often push people away before we get the opportunity to realise. The outburst of anger that can explode with no warning signs, turning what should be a small thing into an eruption of frustration making us feel shame and fear of others judging us for being crazy'. The self- medicating stemmed from relentless mental chaos, where we can sometimes turn to

substances such as alcohol or smoking/vaping to temporarily calm the storm. It's our attempt to quiet an endlessly loud mind, however we then become frustrated at ourselves for using these substances as we know it's not a healthy way to manage, but it's hard to stop ourselves in the moment. The intense rejection sensitivity where we can interpret something small as major betrayal and therefore creates deep pain. The inner critic from the voice inside us often telling us we're disliked and inadequate which magnifies every perceived flaw and failure.

Personal Experience of Taking ADHD Medication:

Personally, I was against taking medication at first, as I had gone all my life without it, why would I suddenly start taking it now as an adult? After having many open conversations with others close to me about what they have observed of me in different situations, I thought I would trial the medication to see the impact it could have.

Friends have shared the challenges with maintaining my attention, as conversations often drift from one topic to another; sometimes this causes me to become frustrated when others become confused by this. Background noise, particularly loud environments can make it difficult to organise my thoughts and respond appropriately and contribute to a conversation. Since being on medication, others have observed that I appear to think more logically and can contribute conversations with relevant information to the topic.

I often struggle with procrastination due to a lower ability to sustain attention and motivation for tasks that are not stimulating, therefor I will start tasks last minute as the task becomes more stimulating due to the stress and adrenaline making it easier to engage. Others have observed that I can engage in a task for approximately 30 minutes before losing

focus and therefor becomes distracted. Since taking medication, I can focus immensely on tasks compared to before, which has impacted my studies at university and administrative skills within the workplace due to being able to sit down and focus on the tasks required.

It was only when I took a break off the medication, I realised a lot about myself. I realised how anxious I was. I was coming up with scenarios that have 0.000 percent chance of happening, however it was probably going to happen. I disliked talking to people all day because I was often forgetting how to use words and became quite socially awkward due to the stuttering of attempting to get my words out and the constant word vomit.

Comparing the difference of food when on my medication and not, has been interesting, and this is where I began to understand and further research the eating disorder I had been battling for years. When I wasn't taking medication, I found myself constantly thinking about food. As soon as I got bored or had low motivation to do something, I would turn to food, usually being something full of sugar as I was trying to regulate my nervous system with the sugar. I was fully aware of what I was doing and that the sugar wasn't going to provide me with the energy I was searching for, however I couldn't ignore the food noise in my mind. When on my medication, the food noise is quiet, as I can focus on the things I need or want to be doing.

Ideas for Improving the Medication and Diagnosis for ADHD:

Although receiving a diagnosis is comforting for many people, the aftercare once you have received this is limited. It feels as if you go to the doctors for a health concern, they check you over, provide you with medication and hope you get better soon. ADHD is more complicated than that, as after your diagnosis you feel as if you have been given a whole new life to start over. You are about to learn about yourself all over again, unlearning everything you had before and starting right from the very beginning. However, many of us feel lost afterwards, knowing where and what to start with. It would be with great interest that there is research and consideration of aftercare once people have received their diagnosis, such as understanding the diagnosis fully, the science behind traits, how they affect us and various strategies to supporting managing life with ADHD.

I have done a great amount of research since my diagnosis, to learn and understand myself, which I am grateful for being provided with a further insight on the condition as I work with children and young people with ADHD and Autism. However, I would love to share all the knowledge I have learnt and continue to do so, about understanding the way our minds work and strategies recommended to support the condition. Factors such as diet, and how a high protein diet supports our brain function.

The significant increase of ADHD diagnosis' is both comforting and concerning. There is more information and awareness of ADHD across various platforms, however the key word to highlight is awareness. There is awareness although not a great depth of understanding behind the condition and the factors that impact our lives, that others may misinterpret or have limited understanding on. Considering there is an increase of ADHD diagnosis, perhaps we should as an island be looking at making all environments, such as schools and workplaces, ADHD friendly. Instead of strategies for children with ADHD only, when the whole community would most likely benefit from the resources and strategies if they were offered. Things we can benefit from, I am sure that others without condition would also benefit from. We should be normalising this condition within our island community if we are aiming towards being an inclusive island community.

In addition, the concerns of increase of diagnosis is, asking the question of whether these assessments should be looked into in-depth. ADHD traits and trauma traits are extremely similar, causing a fine line between the two. The increase of diagnosis therefore increases the demand of medication, resulting in a shortage for those who rely on medication for continuing their daily lives. Perhaps those who are offered medication should be on a trial with them, and another assessment or review is to be taken place afterwards, with open questions to be answered, for doctors/professionals to see how the medication has impacted that person's life. I have noticed that misdiagnosis can be recognised by the effects medication has on the individual.

Additional Information to Share – Research to Consider:

Adults and girls are more likely to be diagnosed with Inattentive type ADHD than boys. ADHD is anticipated to be 3 times more common in boys than in girls, within the paediatric population. It has been established that males with ADHD are much more likely to externalize their symptoms, compared to women who are more likely to internalize their symptoms (Ref; 4, 5). Compounding those observations, some trust that in truth, the superiority of ADHD in girls is better than said, because of their greater ability to "mask" their symptoms during formative years. There is likewise a higher level of medical suspicion of the condition in boys, which might also make a contribution to underdiagnosis in girls/women (Ref; 18,21).

Due to the underdiagnosis of ADHD in girls, many women may not realise they have a psychiatric disorder until they reach late adolescence or adulthood. This pattern is highlighted in several case studies that first documented the connection between bulimia and ADHD. These studies often depict young adult women who appeared to have a normal' childhood with adequate attention to manage school responsibilities, family and social life during their early years. However, as they encountered more complex challenges, such as attending university, manging their time, navigating relationships  and  making  life  decisions,  their  executive function  deficits  became noticeable. This outdated narrative is shaped by factors like stereotypes, a lack of awareness about ADHD symptoms, and the exclusion of adult women from crucial ADHD research, discussions and treatments.

Girls with ADHD are almost six times more likely to have bulimia than their peers (Ref; 1). A study conducted at Harvard Medical School, in 2007, found that girls with ADHD were almost four times more likely to have an eating disorder than those without ADHD. Another empirical study found that 11 percent of women with ADHD, compared to 1 percent of women without, reported a history of bulimia.

Research shows that disordered eating is commonly linked to ADHD. For individuals who struggle with ADHD, food may become a way of self-medicating or exercising control in an environment that feels chaotic or out of balance. Regulating food intake requires the planning, organization, and time management skills lacking in those with ADHD. Deciding what to cook and making sure you have the ingredients to cook it require planning ahead; this is an example of poor executive dysfunction. People with ADHD are not as sensitive to hunger and fullness cues as those who are undiagnosed. In addition, people with ADHD sometimes skip meals to stick to a routine or because they get distracted. This sets them up to overeat or overeat later in the day. The ADHD brain does not produce sufficient levels of dopamine, the neurotransmitter involved in feelings of pleasure and regulating attention. In order to increase dopamine levels People with ADHD may exhibit a "deficit reward syndrome," seeking external stimuli to increase dopamine levels normally. Foods high in sugar and carbohydrates increase dopamine and serotonin levels.