Social media fills the gaps for ADHD diagnosis and care

Online communities are filling the gaping holes of our crumbling mental health system.

Specialists across Australia are reporting a noticeable influx of referrals for adults, predominantly women, seeking an ADHD diagnosis.

As waitlists continue to grow and ongoing treatment costs remain impossibly high, patients are turning to social media for information and support.

“As much as I’d like to be able to say I pulled myself out of this mess with the help of many resources and professionals, the unfortunate reality is that I didn’t,” one woman said.  

Like countless women in their late 20s to 30s, Alessia Porcaro discovered she had ADHD and autism from social media. 

Alessia Porcaro. Picture supplied.

“All our stories are the same, it’s like a textbook response, every time I find someone like me, the only way out, I’ve found, is to help each other,” she said.

Attention Deficit Hyperactive Disorder is a neuro-developmental condition, affecting one in 20 Australians. ADHD Australia characterises the condition as persistent patterns of impulsivity, inattentiveness, hyperactive behaviour and difficulties regulating emotion.

Social media platforms such as Instagram and TikTok have played a significant role over the past three years, raising awareness and giving users a safe space to share their experiences of living with ADHD. 

Alessia was working in the accounts receivable department for a fashion company when the pandemic hit.

A job she had successfully managed for the past 10 years suddenly felt impossible. 

I just became paralysed by my own brain. Even if I want to do something I can’t.

Finding it hard to cope with the uncertainty of lockdowns and the transition of working from home, she began to suffer from executive disfunction, a common ADHD symptom where people have difficulty completing basic tasks. 

Alessia discussed these difficulties with her employer and was encouraged to use her long service leave to take time off and seek help.

“My self-diagnosis started from just scrolling through social media and searching some of the main hashtags like #nerodivergent and #adhd,” she said.

“I started looking into it, but I didn’t know where to look or how to start or who to ask,” she said.

After discovering that psychiatrist wait times had reached more than 12 months, Alessia paid more than $2000 to see an adult ADHD specialist. 

I was told there wasn’t anyone who even had appointments this year.

While Alessia was on the waiting list, the online neurodivergent community helped her to better understand the condition and connect with countless others who had had a similar experience.

“I feel like I could have worked this out myself years ago if the information was put in front of me, knowledge is key,” she said.

Although Alessia received her diagnosis in March this year, her battle for treatment and medication remains ongoing. 

Picture by Tara Winstead/ Pexels

“I probably won’t have the help I need until December, but I’ve definitely come a long way mentally, really that comes down to understanding your diagnosis and the self-reflection that comes with that,” she said. 

“Disappointing to say the least, but as a late diagnosed female, this seems to be the trend, I know, because I speak to them every day.”

The ADHD Australia National Survey found the No.1 difficulty faced by those living with the condition is the impact it has on their employment, social relationships and the family unit. 

According to psychiatrist Dr Peter Heffernan, Australian psychiatry has a “peculiar blind spot” in adult ADHD research, one that doesn’t seem to exist in Europe and North America. 

Dr Heffernan has been specialising in adult ADHD for the past 10 years. He established the Royal Australian and New Zealand College of Psychiatrists ADHD Network which promotes the study and research of ADHD in all stages of life.   

“Over the last 30 years, we’ve been getting better at identifying what are the core features of ADHD, and there’s a growing appreciation that women and girls who aren’t the naughty boys, are also cases of ADHD,” he said.

Bell Caruso says she had social media to thank for her diagnosis. Picture by Morgan Sette

“Although symptoms may have been present as a child, they presented differently to the standard expectation and therefore may have been missed,” he said. 

Recent studies believe that the lack of diagnosis in women could be due to referral bias, misdiagnosis and the likelihood of co-morbid conditions such as ASD, anxiety and depressive disorders. 

The general understanding of ADHD is that it causes children, typically boys, to be hyperactive and distracted. Young girls, however, usually experience internalised symptoms that can make them seem daydreamy, overly sensitive or anxious. 

Bell Caruso, 32, had been receiving ongoing treatment for depression and anxiety since her teens, but after learning about ADHD through social media, she decided to seek further help. 

I have social media to thank for a late diagnosis at 31. Nothing has made more sense in my life. 

Bell was made redundant during the first year of the pandemic and decided to use the opportunity to start her own marketing and PR business, Rebel Yell.

The consequential strain of starting a company in the height of a pandemic caused a significant decline in her mental health, bell found herself questioning diagnosis after scrolling through social media.

“I discovered that I’ve got ADHD from Instagram,” she said. “I read an article and it related to me so much, then obviously my social media algorithm started picking up on that and showing me more and more information.”

Due to the limited number of specialists in Adelaide, Bell’s only option was to join a long waitlist for a telehealth assessment service, Psych2U.

A 2020 report from Mental health work force Australia found that there were just 3769 psychiatrists at a national level, equating to roughly 13 FTE psychiatrists per 100,000 people, with most working exclusively in the private sector. 

Bell said the months between her referral and eventually seeing the online psychiatrist were “long and painstaking”. She became more aware of her symptoms but knew all she could do was wait. 

Dr Peter Heffernan

“My mental health went downhill, and I started becoming reckless. I think I was trying to take pressure off myself, and I started sort of self-medicating with things like alcohol and cigarettes,” she said. 

After a six month wait, Bell was diagnosed with ADHD along with multiple co-morbid conditions.

“I was so relieved, I just wanted to celebrate. I wasn’t sad, just fucking stoked because I always knew there was something else, and now I know what,” she said. 

Although Bell received her diagnosis, she was forced to wait a further six months for a follow-up appointment for medication and further assistance. 

Eight months later, Bell was disheartened to report her experience with the second specialist was far from professional, describing the consultation as “careless and dismissive”, leaving her back at square one.

“I was told to get in touch and book an appointment with him when my anxiety and depression were under control,” she said. 

While going through diagnosis, Bell found that much of the information shared through social media helped to better articulate her experience and symptoms with family and friends.

“It creates a level of credibility to what I’m saying when I forward a funny Instagram video of a couple dealing with ADHD, or someone showing habits, those seems to get through to people in my life more than real-life examples,” she said.

“There is the danger of people trying to fit a mould or misdiagnosing themselves but there’s not enough professional help out there,” she said.

While many users have found the new understanding of the condition life-changing, some experts have warned it could be creating misunderstanding.

Dr Sujit Sharma

Victorian psychiatrist Dr Sujit Sharma spoke to Monash Health about how the pandemic and over-exposure to information should be to be taken into consideration when seeking a diagnosis.

“Social media may be creating a sense of confusion leading to misinterpretation and over-representation of this diagnosis,” he said.

While many patients seeking a diagnosis are experiencing symptoms of ADHD, Dr Sharma said that ADHD is not simply a difficulty staying focused.

“Some people need to think about co-morbid conditions like anxiety disorders as they underestimate how much anxiety can affect focus.”

“Almost every other referral is about whether a patient has ADHD because they’re struggling to focus. It has absolutely peaked during COVID-19,” he said.

As waitlists continue to grow and ongoing treatment costs remain extremely high, the outlook for neurodivergent people seeking help remains bleak.

Dr Heffernan says the difficulties are being recognised and there is hope for the future.

The problem we’ve got and the reason for the bottleneck is that there is shortage, a desperate shortage, of GPs, psychologist and psychiatrists who have the correct training.

Dr Heffernan said he grew tired of complaining about his colleagues “who weren’t equipped to diagnose, treat and assist with ADHD”, and has spent the last 18 months rolling out an in-depth training program for general practitioners.

Swinburne University’s Clinical Psychology Department is also working closely with Dr Heffernan to establish better training for ADHD diagnosis and creating unique systems for ADHD students at a university level.

“I think we often underestimate the extent of which this modern world has essentially been designed by neurotypical middle-aged European men for neurotypical middle-aged European men,” he said.

October is ADHD Awareness Month ADHD Australia is at adhdaustralia.org.au