Blog – Celebrating Progress: An Autism Specialist on Changing Perceptions

4 April 2024

This week is World Autism Acceptance Week 2024 which looks to celebrate diversity and promote acceptance of autistic people.

Nadine Bowery joined Healios’ private intermediary service Melios, which offers private neurodevelopmental services to children, young people and adults, last year as a clinical specialist for autism and is currently overseeing the day-to-day running of operations.

Behind her is a career full of experience as a community learning disability nurse in the NHS which led to her specialising in autism and join her NHS trust’s first autism assessment team at its birth 14 years ago.

Here Nadine looks back on the changes in autism assessment and understanding she has witnessed through her career, and offers insightful advice and guidance to young people, adults and families on their autism journey…

Public and professional understanding of autism is changing all the time

With such a career behind her Nadine is well placed to comment on how levels of understanding and acceptance of autism have changed over the years.

“I’ve certainly seen a change in the public understanding of autism”, she says. “Historically people did think of your ‘Rain Man’ example, your classic stereotypical autistic person and therefore they would discount everyone else.

“As professionals we always understood it was more than that because you have the classic person with autism and a learning disability and then you have people with autism and not a learning disability.

“Then within that we also have every little subtlety and difference, such as people masking which we had never considered before. So way back when, when families were saying to us they’re doing this and this at home, we would counter that we didn’t see that at school and their teachers aren’t seeing it.  

“Years ago we were rigid in that thinking but thankfully as time has gone on the understanding and realisation is there and we can look at how they are getting through the day at school and are much more aware of masking and camouflaging.”

The rise in adults getting a diagnosis

One of the big changes Nadine has seen in recent years has been the rise in adults coming forward for a diagnosis, something she says is sparked by this rise in understanding and awareness.

She says: “We certainly now see more adults and women coming forward to be assessed as the understanding has changed.

“Autism assessment teams for children only really became a thing around 15-20 years ago in NHS trusts across the country. Assessments were being done ad-hoc by pediatricians or psychiatrists before that, so it’s only now really that places are starting to have adult teams.

“There was nowhere for adults to be assessed and additionally people were being misdiagnosed as adults as well, receiving wrong psychiatric diagnosis as well so having adult assessments available has just opened those doors to people to get the right diagnosis.”

“You can see a weight lifting off their shoulders”

Nadine continues to dip her toe into clinical work carrying out assessments and post-diagnosis support and says that particularly for those who have gone a significant proportion of their life without an autism diagnosis, the recognition one brings is huge.

“You can almost physically see a weight lifting off their shoulders,” she says. 

“I’ve heard teenagers say such sad things about what they were thinking about themselves so now you can see them finding themselves and their own tribe as they say, and the acknowledgement that what they’re experiencing is recognised. 

“That I can imagine as an adult is also incredibly liberating, that someone is acknowledging what they have had to deal with throughout their life.”

A diagnosis can change everything

Nadine says an important part of receiving a diagnosis is the doors that are opened, as well as the opportunity to make networks with other people who have gone through the same experiences.

She says: “One lady I spoke with recently had an online gaming group she was part of and she asked on there if anyone else had a neuro difference and a number did so they now have their own group chat and support each other.

“The same lady was also worried about telling an employer about her diagnosis. There is loads of information on the National Autistic Society website about what employers can do, even just to interview people or how to word their job adverts in a way which makes people think they can’t apply. That classic line of ‘good communication skills’ for example can put an autistic person off from applying.

“Those types of things can make a big difference and it’s the same with people already in work, there are adjustments that can be made at work whereas in the past they might have had to move jobs because things aren’t working out.

“A diagnosis can also be really important for family understanding – once your family understands you in a different way suddenly dynamics can be changed for the better as they can see why certain behaviours may be there and things can become easier.”

The start of a new journey

It can be a scary time for people and families receiving a diagnosis and Nadine says it is a learning process for all those involved.

“I always say to adults or young people and their families that the diagnosis is almost like the start of their next journey,” she says. 

“They’ve already been on a journey to get to where they’ve got to but it’s the start of maybe a different journey where they’re using a different A to Z or a different version of Google Maps and that the main thing is that it’s a learning process of learning about autism themselves as well.

“There are little tiny things that they can put in place to facilitate progress – we don’t ever want to change a child or an adult but what we can do is change things. We can change the way we talk or the way we have things to try and make it easier.  

“Autistic people and people with any neurodiversity feel like they’ve always had to try and fit into a different shaped world when actually we should make the world the right shape for everyone. We should be doing things as much as we can to make things easier and equitable for everybody.”

The future can be a very bright one

Nadine says that she feels it’s important for young people especially to know autism is not a barrier to their progress – in fact their differences are what make them unique.

She says: “It’s important for young people to hear from adults who have been in their shoes and not been held back by it and gone on to great things.

“I will often show kids famous people, people who’ve achieved things with an autism diagnosis and show them that there are no limits to their potential and it’s not a negative. 

“Everyone finds their niche – yes school can be hard because everyone has to do certain things but as you go through life you can focus on things that you’re more suited to and be with like-minded people.

“That’s the message I always try to get out to parents and young people particularly – things may be hard now but it doesn’t mean they will always be that way.” 

Explore the comprehensive resources and insights Healios offers on neurodivergence and mental health. For personalised support or inquiries, connect with us here.

Find out more about our private neurodevelopmental services at Melios here.

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