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ADHD guidelines offer clearer path forward for diagnosis and treatment

Aviva Kippax, her husband, Aaron, and two of their three children live with Attention Deficit Hyperactivity Disorder (ADHD).

For them, getting the correct diagnosis changed everything.

"It all makes sense, basically," she said.

"There's a reason why my husband and I met a decade ago and somehow ended up both having ADHD. And then we created ADHD babies.

"It's incredibly validating to know that this is who we are."

However, for many, it can take years to get an accurate diagnosis and treatment for ADHD, with women and girls often falling through the cracks

Aviva agrees, saying getting the diagnosis for her and her family wasn't easy.

"I think it's very rare that you will just smooth on into finding a doctor, finding the right treatment, no waiting lists — doing all these things. You have to be prepared for a fight," she said.

For the first time, patients and medical professionals have comprehensive, evidence-based guidelines for the diagnosis and treatment of ADHD in Australia.

You can read the guidelines in full here. 

"For a family who has concerns over one of their family members, it really provides them with an authoritative, best-practice document, so they can be confident with the treatments offered," said Professor Mark Bellgrove, president of the Australian ADHD Professionals Association (AADPA).

"It will equip them to ask the right questions of the clinicians and others involved in the care of their family members."

It's estimated that as many as one million Australians have ADHD. 

AADPA spent two years extensively consulting with clinicians and people who have lived experience to come up with the long-awaited recommendations, something other countries like the US and France already have.

Professor Bellgrove — who is also the director of research at the Turner Institute for Brain and Mental Health — says the 111 recommendations in the guidelines were designed to unify the treatment and diagnosis of ADHD.

"It will be a go-to bible with the latest cutting-edge evidence for the most effective treatments," he said.

Here are just some of the key recommendations.

Getting GPs more involved from start

The guidelines allow GPs to be the front-line health professionals in not only identifying patients with ADHD, but also in diagnosis and treatment.

Until now, GPs haven't been allowed to formally diagnose ADHD, which has made it more difficult and time-consuming for Australians to get a diagnosis in the first place. 

Generally, a psychiatrist or paediatrician can diagnose a patient, but psychologists can assess children and adults for further referral.

However, Dr Lara Roetske — a practising GP from Melbourne — says as a frontline health professional, having the ability to identify a patient who may have the neurodevelopmental disorder is incredibly important.

"I speak, I think, for a lot of my colleagues: We've been feeling a little bit lonely. There hasn't been anything that we can turn to, to guide us around how we might approach, diagnose and manage patients presenting to us who may or may not have a diagnosis for ADHD," she said.

"That's because there [wasn't] really any up-to-date, evidence-based Australian guidelines. And, for the first time, we're going to actually have those at our fingertips in our clinical practices and that's really very important."

Aviva wished the journey towards her own ADHD diagnosis — and then for her husband and two children — could have been easier.

She says having more support from a GP from the start would have made things much easier as she was exploring a diagnosis.

"It's really scary to go down this road," she said.

"There are long waiting periods and, sometimes, thousands of dollars involved. I think if you have that frontline sort of help — even just to be able to discuss it openly without any recommendations, medications and solutions — it's really beneficial because you trust your GP and you generally go to them about all sorts of things."

Supporting families, carers and the wider community

Supporting and advocating for a child with ADHD can be incredibly difficult for carers and parents

Professor Bellgrove says it's very important for families to be well-equipped in supporting and dealing with their children's needs.

"For young children, in particular, where parents may not want to use medications, parent and family training is an evidence-based way of helping the family and the kids," he said.

The guidelines also recommend funding for a national ADHD hotline and to support the use of properly-qualified ADHD coaches to help people manage living with the condition.

"An ADHD coach can be a really important part of a multidisciplinary care team, as they are really skilled in helping guide folks with ADHD through their journey, by helping them to plan, organise their lives appropriately," Professor Bellgrove said.

Aviva says being offered some sort of parenting support at the very beginning of their ADHD journey would have "taken a lot of the weight off".

"I think there's a huge gap in information from when someone is diagnosed, let alone the parents being able to find out this sort of information," she said.

Aviva feels that her family has benefited from their shared experience of having ADHD, but says every day can still feel haywire.

"There's a lot of chaos and tears some days. But, to be honest, we function very, very well," she said.

"I think knowing that we have this condition together is what makes all the difference."

For Aaron and Aviva, having lots of visual systems and rewards in place for the children helps them stay organised and on track.

However, the guidelines go beyond just recommending support for carers. They identify a greater need for support and understanding throughout the community, including in school and workplace settings.

"There's an individual living with ADHD at the centre but there's a whole network of family, friends, teachers and employers that need guidance and support too," Professor Bellgrove said.

What about girls and women?

Professor Bellgrove says that, in the past, the traditional stereotypical view has been that ADHD is a disorder for young boys and that research has neglected to recruit enough girls and women.

"That is certainly something that needs to be redressed," he said.

Girls with ADHD can often appear inattentive or day-dreamy rather than hyperactive or impulsive, so they may not come to the attention of teachers and carers.

"They tend to float by until their social skills can't mask the problems they are having any more, for example, with puberty where pressure builds with their academic and social interactions, then you start to see some of the symptoms emerge," Professor Bellgrove said.

"We want to do better at identifying girls earlier because we want to change their life trajectories."

Aviva can relate. She says that, over the years, many people doubted her ADHD diagnosis because she's been able to manage things so well.

However, she says, having a seven-year-old daughter means she's even more aware of how her gender has worked against her in this way.

"I have silently struggled. I think that's a big thing for women. I've been winging it my entire life," she said.

"I've worked out a way to look OK, and to get by but, at the same time, I knew I had incredible talents and drivers that a lot of other people didn't have. It was about navigating that."

For families like Aviva's, navigating an abundance of information and misinformation out there about ADHD has been the most difficult part of the journey.

"I'm lucky because I'm really into advocating for myself and my family. So everything needed to be about the right doctors, the best reviews," she said.

"It was really challenging. But I'm grateful that I had that kind of fight in me and I think you really do need that."

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