By bobb | Thu, 7/10/2021 - 07:10

Charlotte Gore

The ACT government's Access and Sensory Vaccination Clinic was designed to be a space to support vulnerable Canberrans to get vaccinated against COVID-19, but some members of the autistic community say the facility comes up short.

Key points:

The sensory vaccination clinic shares its waiting room with a walk-in centre despite being announced as a "dedicated space"
Members of the autistic community have criticised the centre for failing to provide an adequate environment for them
ACT Health Minister Rachel Stephen-Smith says she is always happy to hear feedback on how the centre can be more sensory-friendly

The clinic shares its waiting room with the walk-in centre already on site, meaning those who need to use the facility for its sensory-friendly spaces have to wait until they are taken to a private room for a chance to be in a dedicated environment.

Samira Reeve says her 14-year-old son attended the accessible vaccination clinic to receive his first dose of Pfizer, and walked away severely overwhelmed.

Loud noises, busy spaces, bright lights, and being touched are among the things that overwhelm Alex, all of which his mother said he found at the Weston Creek clinic.

Mrs Reeve said it was very frustrating to see the facility sharing its space, and that calling it a sensory centre was "akin to putting lipstick on a pig".

"If they're going to call it an autistic space, actually make it an autistic space," she said.

"You can call it whatever you want, that doesn't mean that's what it is.

"We'll just call it a sensory centre, we won't do anything about it but therefore we've ticked that box. No, that's not the way it works.

"There are so many things you could have done that actually would have made it a sensory centre."

Samira Reeve's son Alex is on the autism spectrum, and struggles with external stimulus like busy spaces.(Supplied: Samira Reeve)

Jenny Maskell has a similar story, her 13-year-old son attended the specialty clinic in an attempt to get vaccinated, but left unsuccessful.

She said the clinic sharing its waiting room with the walk-in centre seemed to show a lack of understanding on the part of the government.

"Knowing this space is just a multipurpose walk-in and 'sensory' space is really not understanding sensory barriers," she said.

"Our experience was made unnecessarily harder with the promise of a sensory access option that isn't set up for pervasive sensory barriers like [my son's].

"The option is a great start, but more needs to be done."

Alex (pictured here with his father) after he received his vaccination at the Weston Creek clinic. (Supplied: Samira Reeve)

An ACT Health spokesperson said that if needed, access to the clinic was possible without waiting in the shared space.

"Anyone booking an appointment via the disability booking line can inform the booking team of any specific needs for their appointment, which are accommodated wherever possible," they said.

"This may include facilitating access to the facility in a way that avoids the need to wait in the shared waiting room."

But Mrs Reeve said it was not enough to have that option, people accessing the clinic needed to be explicitly told about it.

"They never said that [we could avoid the waiting room] on the phone," she said.

"At first admin point, when they're signing in, put the information in clear text."

Mrs Reeve said she wondered if ACT Health were "hoping that the autistic community were ... unable to ask for things they didn't know they had access to — or savants who [already] knew they could ask for those things."

Calls to listen to lived autistic experience

Dr Matthew Sellen from the Centre for Neurodivergence in Deakin said autistic people could be severely impacted by being in over stimulating environments.

"It can cause distress, anxiety, it can cause sometimes physical pain," he said.

"There have been instances of people even being so distressed in a certain environment that they get post-traumatic stress symptoms afterwards.

"Often there is no outward evidence of that until someone is completely overwhelmed, and it makes it really hard to judge that.

"Even when people are overwhelmed and even when they're able to explain to someone around them 'hey this is what's happening', it's very difficult for people to know what to do to rectify that once it's gone beyond that point."

Dr Sellen also said often, when considering sensory needs, organisations tend to think providing a low sensory environment is the only thing autistic people need.

"It's really difficult because you need a space for people who need less sensory stimulation, and you need a space for people who need more sensory stimulation," he said.

"So someplace it's quieter and a bit darker, that's kind of what people are offering or suggesting in this kind of circumstance.

"But you also need things like weighted blankets, weighted toys or other things that can provide more stimulation as well."

He said sensory-seeking people should have their needs considered as much as sensory-avoidant people.

"Sometimes [in autistic people], there a circumstances where people need a lot of stimulation," Dr Sellen said.

"What makes it really tricky is that it's often a blend of the two.

"Someone can be hypersensitive in a certain area, say to sounds, while needing a lot of stimulation in other sensory senses, like visually.

"So it's more complicated because it depends on people's emotional state, how they're feeling otherwise, and so it's not a one size fits all."

Dr Sellen suggested the best thing for the accessible vaccination clinic moving forward would be a willingness to listen to the lived experience of the community and enact the changes they want to see.

"I think the biggest thing is transparency and openness to feedback," he said.

"If enough of these smaller changes that have a big impact start to happen, and people start to trust these places are trying to do the right thing and take action when required, that provides a lot of confidence and reassurance."

'They genuinely care'

When asked about the issues with the clinic some members of the autistic community were reporting, ACT Health Minister Rachel Stephen-Smith said she had mostly received positive feedback.

"I'm always happy to take feedback, but I actually just saw an article the other day on LinkedIn from an autistic Canberran who was praising the facility and saying it exactly met their needs," Ms Stephen-Smith said.

The article was by Ashlea McKay, who said while her experience was very positive, other autistic experiences should be heard too.

Ms McKay says she hopes ACT Health takes onboard the community feedback, good and bad. (Supplied: Ashlea McKay)

"I was guided straight into the consult room where I was vaccinated and I didn't spend any time sitting in the main waiting room at all," Ms McKay told ABC News Canberra.

"That might also be why I didn't notice the walk-in clinic service, it just wasn't a factor in my individual experience.

"I hope that those who haven't had good experiences are being supported to comfortably convey their feedback and help ACT Health learn from it, because they genuinely care about offering accessible and supported vaccination experiences.

"All autistic experiences are valid and the differences between my individual experience and others' highlights how much diversity exists within the autistic community — no two of us are exactly alike."

An ACT Health spokesperson said authorities understood that the clinic would not be suitable for everyone, but they had systems in place to support people with needs outside of what the clinic could provide.

"We ... recognise that the access and sensory clinic will not meet everyone's needs, and the team works with individuals and families to make alternative arrangements where necessary," they said.

"This can include in-reach testing in a person's home where this is necessary to ensure that the person can get vaccinated."

'Little things' could make a big difference

Mrs Reeve said there were many "little things" that ACT Health could do to make the clinic more suitable for others like her son.

She said the lack of information provided meant when her husband and son arrived at the clinic, they were equally unclear as to what their visit would entail.

"[Autistic children] don't know what's coming up next and neither do their parents, so they can't plan ahead with them," she said.

"We found out after the fact you could ask for the lights to be turned down, there was no signs or anything there [letting us know]."

Mrs Maskell suggested a simple way to make the clinic more sensory-friendly was to provide social narratives — sheets of clear, simple information with visual aids.

Social narratives, like this one Jenny Maskell made for her son's visit to the clinic, help autistic people visualise the steps involved in a challenging task. (Supplied: Jenny Maskell)

"We need a visually logical environment, eg: 'sanitise, change mask, sanitise' could have pictures with the items needed for each step spaced along the wall, Mrs Maskell said.

"That way people pass them as they enter, in the order they need to do them, with clear, visual instructions.

"There is less need for staff to explain when environments are visually logical, and there are fewer misunderstandings."

Dr Sellen agreed, saying social narratives were especially helpful in unfamiliar situations to put people at ease.

"A social narrative is a story that represents something in a way that respects someone's communication preferences and communication needs outlining what's going to happen in a certain situation, particularly a new situation," he said.

"It may be something they're unfamiliar with or a situation that the person knows just enough about to know that it might be painful or uncomfortable in some way, and trying to alleviate that.

"With so much else being unpredictable in terms of sensory environments and other environmental stimuli, having some sense of knowing what's going to happen provides a degree of comfort."

Dr Sellen said keeping patients and carers informed was the best way to help the community utilise the space despite its limitations.

"Weston Creek already has live updates via the ACT Health app of waiting times and treatment times and how many people are in the walk-in clinic waiting room," Dr Sellen said.

"Extending that to the Access and Sensory Clinic might not be too much of a stretch, or at least using that information to assist people in booking a vaccination slot when it's less likely to be busy —  ideally online —  with the ability to submit a sensory profile for other needs in advance."