On Tuesday, 23rd of February, an IG live event discussing what it is like to live with ADHD as a creative was held by @Gemnbread – an online special needs support group. Gemnbread’s founder Sharanya Radhakrishnan hosted the event, joined by two speakers from @kekabumi – an all-girls creative collective. They shared some stories of the challenges they face and the stigmas that have been attributed to them and to others with ADHD.
At 8:05 pm, Kasih Azhar and Lizzie Zany from kekabumi join Sharanya in the live. After welcoming the speakers, Sharanya (host) starts off by prefacing that she is not a mental health professional and that this interview is based on her interactions with people with ADHD as well as some research she has done on her own. She then gave a short explanation of what ADHD is and its formal definition.
ADHD, which stands for Attention Deficit Hyperactivity Disorder, is neurodevelopmental and is diagnosed in both children and adults based on symptoms like inattention, difficulty focusing, hyperactivity, or impulsivity. She emphasizes that, while some people may experience such symptoms, not everyone has ADHD. There are a lot of people who diagnose themselves as having ADHD when in reality they don’t. She mentions that for a proper diagnosis at least 6 symptoms must be present by the age of 12 and must be ongoing for at least 6 months. These symptoms are also assessed on an ‘impairment scale’ to determine the extent of their effects on the person’s life regarding their work, school, and home. Additionally, the symptoms must not be better explained by any other potential condition.
Symptoms of people with ADHD can vary greatly. People with ADHD often have coexisting conditions such as learning disabilities, anxiety or depression. The behaviours of those with ADHD may appear, on the surface, like problems that most ordinary people occasionally face such as forgetting their keys or having a hard time focusing. For this reason, people with ADHD often struggle with being viewed as careless or not serious. It is important to keep in mind that “behaviour is affected by the brain and ADHD brains function differently than neurotypical brains”.
ADHD brains have difficulties with regulating attention where it can either be too scattered or ‘zeroed-in’ on one thing and hyper focused. Additionally, their executive function develops slower, hindering their ability to plan and keep sustained efforts towards a long-term goal.
It is important to note that not all people with ADHD are physically hyperactive as the hyperactivity may also manifest solely in the brain. This condition is referred to as ‘internal restlessness’ and can cause extreme exhaustion.
Sharanya shares a few more facts about people with ADHD, mentioning that their excess energy, when well-directed, can show up as creativity, generosity, curiosity, or the ability to think outside the box. They are also 3 times more likely to start their own business, not unlike the guest speakers themselves, who have founded their business @Kekabumi.
People with ADHD also have a hard time regulating emotions. The symptoms are often misconstrued as personality defects. This can take a major toll on them and their self esteem, potentially leading to anxiety.
Sharanya then brings the attention back to the girls for her first question. Lizzie and Kasih funnily share that they have zoned out multiple times during her explanation to which Sharanya laughs and responds that this is “Brilliant! as that is exactly what people need to know about!”.
Q1: When were u both diagnosed with ADHD? And was it adult ADHD or were you diagnosed as children?
Lizzie starts by sharing that she was actually diagnosed very early on when she was about 3 or 4 years old but her parents never mentioned it to her. She wasn’t aware of it until she got older and sensed that there was something going on with her that she cannot quite understand. After completing self-assessment tests, she learned that she may be showing symptoms of ADHD. When she shared this with her parents, they casually mentioned how she had been diagnosed as a kid. “So, why didn’t you do anything about it?!”, she says laughing. Her mom also had ADHD and thought that Lizzie should be fine.
As for Kasih, she says that her dad had ADHD as well, so she thinks she’s got the genes. She was diagnosed earlier on and was even registered as calon OKU (special needs candidate) for PT3, UPSR and SPM (formal examinations in Malaysia). She went to therapy as a child and got medications. The meds seemed to cause adverse effects on her brain so she switched to other methods for managing her ADHD.
At this point, more viewers had joined the live, so Sharanya asked the girls to each quickly introduce themselves, who they are, and what they do.
Lizzie is a 25 year old artist and graphic designer. She sometimes art-directs projects for their creative group Kekabumi. Kasih, her teammate in Kekabumi, is a 22 year old musician, writer, girl-guide, and international relations student at Nottingham. (Fun fact: Lizzie designed the poster for the event). After this short introduction, Sharanya then moves on to her next question.
Q2: How does ADHD affect your day to day life?
“That’s a lot” says Lizzie. They both find it hard to explain since the effects are so many and bleed into different areas of their lives. Kasih shares that the effects are most apparent when it comes to making plans for the day. She could write out 5 tasks on her planner to be done during the day but only end up accomplishing one. Lizzie joins in saying she’ll have most likely forgotten about the planner itself by the end of the day.
ADHD can make the day extremely unpredictable for them, where it can either be the best or absolute worst day productivity wise. They say that keeping a fixed routine makes it much easier to manage it.
Q3: How does ADHD affect your social life?
“What about your social life?” asks Sharanya. Kasih says that although she doesn’t feel she is very extroverted by nature, her ADHD seems to make her more extroverted. Meanwhile, Lizzie describes herself as an ambivert and is really sociable around the people she is comfortable with. They both agree that “the downtime is no joke”. After spending a long time interacting with others they find themselves needing a lot of time to themselves. For Kasih, it’s usually after doing gigs where the energy around her is all lively. During the gig, she’s super sociable and energetic, but afterwards she finds she may need up to a whole week without social interaction.
Sharanya thanks them for sharing and mentions how this is useful for people to know. Many of the viewers responded in the chat saying “Proud ADHD” and one shared that they have several empty planners lying around at home, all with “a few optimistic pages of writing”.
Q4: Are people with ADHD more likely to take creative risks?
Sharanya shares that, although there hasn’t been any concrete evidence to prove it, she would like to know whether ADHD makes them more likely to take creative risks.
Lizzie links it to their tendency to be more impulsive and Kasih explains that, since they are naturally less likely to envision the risks and consequences of decisions, they take risks more often. Their thought process is “Let’s create first then we’ll think about the rest later”.
“No consequences, just good vibes” Lizzie adds.
Kasih mentioned that we should consider what we mean by ‘creative risk’, if it means knowing that a certain project is unrealistic but going after it anyways, then they definitely take creative risks!
A viewer commented: “It’s all about instant gratification”. And Lizzie and Kasih strongly agreed.
Kasih mentions that it “depends on the kind of creative you are”. She says that she isn’t much of a musician so she’s not usually tinkering around with instruments, but when it comes to her songwriting, she has crazy outbursts of creativity and it is very much ‘all-or-nothing’. Meanwhile Lizzie has a similar experience with her drawing and designing, she can get five artworks out in a single day then not produce anything else for a year.
Kasih says that the disappointing thing is the lack of consistency as it’s left her with a lot of unfinished projects. She can set her mind to doing something then, before managing to finish it, find herself super involved in something else or forgetting that she even started a project. Lizzie agrees and adds that sometimes the hyper-focus caused by ADHD makes them more harsh and critical of their work, which is a bad place to be in mentally.
They find that when they are not in the right mindstate, they experience a block that isn’t really comparable to procrastination. They physically cannot bring themselves to focus on the work once their brain has shut off from it.
Many viewers commented that they experience something similar and can relate to what the girls are talking about.
Q5: What are your challenges with corporate jobs?
Sharanya moves on to ask about corporate jobs and the challenges the girls have faced with them.
“Omg she said the ‘c’ word”, Kasih replied and started sharing her story of working a summer job at a clinic.
Although she let them know at the job that she’s “not messing around” when she says she can’t handle numbers, they assigned her a money-managing role anyway. They insisted that she’ll overcome it eventually. Kasih says that, while she understands that line of thinking and the excuse people often give of having “seen someone else with ADHD take a similar role without a problem”, it doesn’t change the fact that she’s not good with numbers.
One day she had a mixup that cost RM60 to be lost and she was blamed and scolded for it. She was told “Come on, this is just a desk job, how can you be a copywriter if you can’t even do the cashier job properly?”. Sharanya asks her if it was hard to explain her situation. Kasih responds that she just found it funny that even when working in a clinic, which is part of the medical field, there is still a lack of understanding and empathy towards differently abled people. She was unsure about corporate jobs before that but this experience confirmed to her that “the 9 to 5 is not for her”.
Lizzie currently has a corporate job and describes it as “mundanity at its best”. Although her job is on the more creative side (graphic design), she still often finds it unfulfilling and can experience about 2 to 3 week periods annually where she’s “totally out of it” and does not perform as well. But she mentions that, when there are bills to be paid, it becomes necessary to somehow push through and make it work. Ultimately, she hopes to become a full-time artist.
Kasih jumps in saying that once she graduates she’s going to become a rockstar regardless of what happens. Lizzie mentions that Kasih is already in a girl group. “Shout out to Pandoras!”
Q6: Do you find it challenging to follow up on an idea?
Lizzie says that the way they ideate is all ‘volcano and ideas flowing everywhere’.
Kasih agrees. If someone is looking for ideas, concepts or brainstorming, she’s ready to give them. She’s good with “braining the concept”. However, when it comes to following through and executing, it’s almost impossible because she doesn’t think much about the process. What they focus on is the vision and “is the art hot?”.
Lizzie adds that this is the reason they need the rest of their Kekabumi team. Their friend Connie reminds them every 6 hours to keep them on track. If they don’t have someone reminding them regularly, they have no idea how things will get done. They don’t mind at all when people are being a bit pushy with them or constantly asking them if they’ve gotten tasks done. The notifications help to keep them on their toes.
Kasih finds that she is almost a new person each day since ADHD forces her to live in the moment with little sense of time. She often can’t even remember what she did the previous day. That’s why they appreciate the constant reminders from the people around them.
One of the viewers commented “Shout out to the support systems”. Kasih and Lizzie both agree and emphasize its importance. “Yes!, find yourself a support system! Please!”. They advise that it should be a person or group of people that can be trusted to understand how the person with ADHD functions and what they go through.
STIGMAS AND MISCONCEPTIONS
Q7: There are a few stigmas attached to ADHD. What are the things you have heard from people? Do you face discrimination or mistreatment?
Lizzie started the conversation and restated the fact that her parents chose not to do anything about it because they assumed she would “grow out of it” shows the stigmas attached to ADHD. She affirms that there’s no such thing as growing out of it because it’s not a phase. She reassures that she’s much better now than when she was a child, but ADHD can evolve into toxic habits and affect relationships with oneself and others. She explained that when with ADHD, many people will say that “you act like a kid” and won’t take one seriously. Kasih agreed with Lizzie. She claimed that because of her extroversion, she’s very physically affectionate with people ever since she was a child. Recently, a significant other pointed that out to her, and she had a sudden realisation. She said, “The thing about ADHD is that no one tells you how to adjust to your age”, and to her, the childishness comes naturally.
An incident Kasih recalled about being discriminated against was during her UPSR year when she saw herself in the newspaper and the headline read something along the lines of, “She got 5A’s despite being hyperactive”. She didn’t understand the need to mention her condition. She has even come across moments where people ask her, “Are you sure you can do this? You have ADHD” and that’s why she’s a creative, and after her ‘clinic’ experience she knows she can’t be in an environment where she will be forced to do something.
Lizzie continued stating that she hates meetings because she can’t focus if she’s sitting still so she’ll play games while listening. Kasih agreed and mentioned that she can’t sit down to do something if she’s not stimulated. She studies best while she cleans her room because she has to multitask to make it work, but then for certain things like art, she has to be doing only that one thing to focus properly. Lizzie followed up by saying, “You never know which things need to be done multitasking and which need to be done alone”. She said she loves music but her Spotify hasn’t been active for a long time because she can’t listen to music while doing art or designing.
Many people assume that if she doesn’t remember something it means that she doesn’t care about it or that it’s not important to her, said Lizzie, but that’s not true. Once, she even missed her therapy session because she had forgotten about it, despite setting alarms and reminders and had to pay a fee. She said the staff had told her to “just remember”, but telling people with ADHD to “just remember” won’t work.
Kasih proceeds to explain that whenever she is pulled over on the road by the police. She’ll be extremely friendly and make small talk because she gets nervous and they assume she’s under the influence of drugs or alcohol.
Many people claim that ADHD is not deserving of treatment and it’s written off as invalid. There are books on how ADHD doesn’t exist.
Kasih claimed that when it comes to treatment, people who say these things are most likely interested in pseudoscience and probably don’t even believe in vaccines. Once, she shared a post about ADHD on Facebook and an older person commented saying she doesn’t believe that ADHD is real and that it’s not a real problem. She reminds the viewers that the spectrum is wide. There are people with ADHD, people with Aspergers, BPD etc. So many people are so different and have their own set of chemicals and DNA, so people work and function differently, face different problems and react to things differently.
It’s just about managing the right chemicals. If people can understand this, it will make people feel less afraid and hesitant. She reminds the audience to always do research. In her experience, medicine doesn’t work for her but that doesn’t mean it wouldn’t work for other people. When approaching mental health, there is too much focus on the outside as people often assume that only mental illnesses with obvious physical impact are serious. Even if some people think they weren’t neurodivergent as a child, they can still be diagnosed as an adult. Just because they were not diagnosed as a child, don’t think it’s too late for them. There is an ageism aspect to it that needs to stop, but really anytime is a good time to seek help.
Lizzie followed up Kasih’s statements, claiming that she uses supplements to boost serotonin because she was once misdiagnosed and was given the wrong medication which had adverse effects, making it worse for her. This is dangerous because people with ADHD can get into addiction easily. Kasih shared that she was given Ritalin as it’s a suppressant that’s meant to help one feel and focus better. Different people respond to medication differently, so always approach with caution especially with ADHD when one is prone to addiction. Everybody has different needs so people need to avoid generalising with the umbrella term of OKU, because each disability is so unique and different.
She thanks her paediatrician who got her on Ritalin. It regulated her emotions and reduced her hyperactivity. She stated that it’s a very complicated topic, but the interesting thing about everyone being so different is that each person requires different treatment. Once the community stops “umbrella-ing” people, they can help them better.
STIGMA: Poor parenting causes ADHD.
A lot of people are under this impression, saying people with ADHD are ill-mannered because their parents don’t care for them enough
It’s difficult to put children with ADHD in a class. Kasih shared that when she was younger she couldn’t be in a classroom. she wouldn’t wear shoes, she wouldn’t sit still in class, and teachers couldn’t understand why, so they assumed her parents didn’t teach her how to behave etc. Parents, especially those now who are aware of mental health issues put in so much effort and go to extreme lengths to provide the right treatment for their children. In her own experience, her mom almost went bankrupt paying for her private tutors. She firmly states that it’s definitely not the parents’ fault.
Lizzie talked about ADHD children and special needs schools. She said the point of these schools is to help children facing difficulties but because it’s still so new in Malaysia, these schools are expensive. These schools are strict and they have organised regulations which is what these children need because the usual school environment is not suitable for their learning habits. She said when she was young and couldn’t remember any of the timetables, her parents were hard on her and sent her to Kumon and it really helped her transform her grades. Despite the really strict schedule, that was what she needed at the time.
Kasih said her mom is her support system because if it weren’t for her she couldn’t have done anything and she feels lucky to have a mom who was understanding and recognised that she wasn’t going to excel at academics, so instead pushed her towards extracurriculars because she could see her thriving there. Her schedule was packed with ice skating, girl guide, etc, but at the end of the day even if she’s had a long day of activities, if her brain wasn’t tired she wouldn’t be able to rest. However, when she was given a stricter regimen that was specifically tailored for her, her grades improved a lot.
Most parents’ strategy is to just get their kids really tired so that they can sleep. So many parents try so hard to care for their ADHD kids. Growing up Lizzie’s biggest issue was not being tired enough to sleep. She claimed she was known to be loud and noisy in class. she would either be doodling or sleeping during lessons. Kasih related to that. She said her sleep schedule as a student was horrible. She would stay awake all night and at school, she would just go to the counselling room to sleep the whole day and the cycle would repeat.
She continued, saying that it was so bad for her that she never submitted any homework. School life (before University) was such a different time for her because especially national schools aren’t exactly equipped to deal with special students. Every day was an adventure because she wouldn’t take things seriously and skip class to just go on adventures. People could just look out the window and see a random girl playing with sticks and that was her. She said didn’t care about school because she felt so hopeless like a lost cause, but she had some teachers who took a chance on her and helped her through, whom she still remembers. She specifically mentioned Cikgu Asyikin, saying she was very patient with her.
All her life, she never felt smart and was insecure about her own intellect, but in University it’s different especially at Nottingham because they have a good support system for students at the wellbeing centre, so that helped her feel better about herself and realise that she’s not alone.
Any advice for ppl with and without ADHD?
To People With ADHD:
Lizzie reminds the viewers to not be too hard on themselves because it’s not going to help. She shared that at one point, she thought if she kept doing ‘normal people’ things, eventually she’ll be normal. She also mentioned that if they come across a task that can’t be completed today, they may be able to tomorrow. everyone is allowed to have more than 1 try. Take it day by day. As people with ADHD are always in the present, they don’t have space for the past or future, so if they can’t fit what they have to do in that moment it’s okay. It’s all about having clarity in that moment.
Kasih advises the audience to not be afraid to ask for help and communicate, if needed, ask people to remind them of things or help them do something. When they realise they are going through something don’t be afraid to say it out loud, it’s okay. If they’re not good at something it doesn’t mean they can’t do anything else. Their talent lies somewhere else. She claimed that once people accept it as a part of themselves, and not something unfortunate, wishing to become “normal”, they’ll feel a lot better and a lot less shame.
To People Without ADHD:
Please don’t treat ADHD colleagues or employees like they are incapable. They’re normal human beings, so treat them with patience, respect and empathy, urged Kasih. Lizzie shared that her ex-colleague would make a daily list of tasks for herself and Lizzie to do so that they both can stay on track of everything together.
Kasih called out to teachers asking them to notice the special students and be patient with them. She said they don’t have to do much, just observe them and not give up on them. The main reason these children don’t try is because the environment discourages them. People reflect on how others treat them. Expectations matter a lot.
When people expected her to do badly in school she felt like “Why should I bother?”. She urged people to believe in them. The advice applies to everyone, not just teachers. She stated that in University, she’s lucky that she met such good and understanding friends because when people don’t have a scary perception of other people’s differences, it’s easier to be a decent human being.
Members of the audience were allowed to ask questions to Lizzie and Kasih after the talk ended.
A member of the audience asked if there is a support group for people with ADHD?
The host replied stating that there is a Facebook group called “Malaysians with adult ADHD“, which serves the same purpose.
The second question asked was, “Is it okay to constantly remind colleagues with ADHD of tasks they need to complete?
Both Kasih and Lizzie said yes but they emphasised that one should remember that they’re just talking to a human being. Treat them normally and communicate normally to find out what works best for them.
Towards the end of the live, Sharanya recommends to the viewers a YouTube channel called “How to ADHD” which posts short 3 minute videos for people with ADHD. She recommends that people who don’t have ADHD go check out the channel as they can learn a lot from it about what life is like for people with the condition.
Finally, Sharanya thanks Lizzie and Kasih for joining her and lets the viewers know that they can reach them at @kekabumi on instagram. Once again, she mentions that she is not a mental health professional and encourages everyone to do their own research to gain more information on the topic. The live ended at 9.15pm.
Gem and Bread socials:@gemnbread
Speakers’ socials: @terimame @lizziezany
Link to watch the event!: The IGTV recording
By Shay Azman and Hiba Azhari