International Focus: Autism support, New Zealand

CYP Now has teamed up with the Churchill Fellowship to publish a series of articles summarising key findings from studies undertaken worldwide by Churchill Fellows (see below). This is an abridged version of Exploring post-diagnostic support for autistic young people by Emily Niner.

In 2019 Emily – then participation manager at charity Ambitious about Autism – undertook a trip to Australia and New Zealand to observe how the countries delivered post-diagnostic support. Here, she looks at provision from the New Zealand leg of her study trip.

UK CONTEXT

In the UK, after you receive a diagnosis of autism as a young person, you are unlikely to be offered any sort of post-diagnostic support. This isn’t because post-diagnostic support is seen as unimportant; we know that good support after a diagnosis can make all the difference in understanding yourself, valuing your identity and ultimately improve your overall wellbeing. But with waiting times for a diagnosis rising and the focus being on the experiences of parents and carers, so far post-diagnosis support specifically for autistic young people has been forgotten.

The NICE Quality Standards for Autism recommend that people receive a follow-up appointment within six weeks of a diagnosis and a personalised autism plan is developed that includes any post-diagnostic support they need, but we know that this is happening in very few places. Only one young person out of 15 youth patrons we asked had received any support, and this was privately through university. However, all felt like they would benefit from post-diagnostic support.

NEW ZEALAND CONTEXT

I wanted to learn from countries that believed in the social model of disability and where I could visit programmes that were about empowerment and dismantling societal barriers, rather than focusing on autistic people as the problem.

Australia and New Zealand have similar governmental and legal structures to the UK which would hopefully make it easier to replicate services. Both countries are currently moving forward in their practice; Australia has published its first national guideline on autism and New Zealand has the world’s first Living Guideline which is added to and revised each year by a group of experts. These documents are current and modern rather than basing services on outdated statistics or outdated views of autism and autistic people.

UNDERSTANDING AUTISM

If ever a young person reads their diagnostic report, they will discover everything they cannot do, all their perceived deficits and the milestones they haven’t reached. The use of clinical language and medical jargon means that it can be hard for the young person to recognise themselves when reading their own diagnostic report – it is so far removed from their experience.

Post-diagnosis support should equip young people with the knowledge they deserve to have about themselves and empower them to be able to use it. Rather than sterile leaflets that list traits and dehumanise autism, we need to give young people the opportunity to work through their strengths and weaknesses and ask questions.

By the time a young person receives their diagnosis or begins to explore a diagnosis given when they were younger, they may already hold negative feelings about the term. Every autistic person is different and so post-diagnostic support needs to be personal.

ALTOGETHER AUTISM

Altogether Autism, a national autism charity in New Zealand, aims to provide personalised support by running a government-funded information and advice service that allows people to ask their questions about autism in a safe environment through phonelines, online chats and emails. Rather than receive blanket information, each question or query is individually researched by their team of experts. The service is free to access and can be used as much as is needed.

There is a wealth of information online about autism, but it is hard to know what to “trust”. Where young people have used social media to access support or find information, there has been mixed results. youth patrons felt that they shouldn’t be relying “on the free support and understanding of under-resourced autistic people” when there should be funded services in their place.

When discussing the idea of the Altogether Autism service in the UK, the youth patrons had differing opinions. Some liked the anonymity of the service and felt they could open up more if they remained anonymous, whereas others wanted a closer relationship with the person they were talking to. For a group who have experienced statutory services more than most, they felt that the word “trusted” was a big claim – they had been misled before or given conflicting information, so what would stop this service repeating those mistakes? However, the consensus was that having a single place to access advice and chat to people with expertise and training, would be beneficial. The opportunity to be signposted to local services, if available, was also a key feature as they felt you can often be overwhelmed by searching.

KEY PEOPLE TO RELY ON

Key to the right support is the right people delivering it. The youth patrons regularly reference the one key person they have been able to rely on; the teacher, nurse, doctor who has made a difference in their lives.

Some of the best services I have seen bring in the whole family or circle of support; they work through goals together and foster an environment where the young person is getting the same support at home and at school or at work.

When services are cut or age restrictions apply, young people can lose their key person and the support they had fought to receive. This can lead to crisis situations if there is no further support available. So, the one “key person” needs to become “key people” for support to be consistent.

The NICE guidelines recommend that local autism teams should provide a “case manager or key worker to manage and co-ordinate treatment, care and support”. Rather than being one key person, this role would help young people and their support circles navigate the system, know their entitlements and not be overwhelmed with the vast amount of knowledge you must pick up post-diagnosis. This is exactly the role that the ASD co-ordinators and needs assessment service co-ordination (NASC) fulfil in each New Zealand district.

ASD CO-ORDINATORS

New Zealand is split into 20 district health boards and each employs an ASD (autistic spectrum disorder) or developmental services co-ordinator to whom you can be referred after diagnosis. This person can support a young person and their family for two years beyond their diagnosis, refer to services, provide training and work on their priorities. The two-year time frame means that the workers can get to know the young person, their families and carers and their needs, which is incredibly rare.

The ASD co-ordinator is a holistic role that steps away from sterile clinical services and champions person-centred practice. Each region of New Zealand also has a NASC which can assess needs, provide support with service planning and help a young person apply for money and resources. Some NASCs also have local area co-ordinators who support a young person to access services in their local community.

Although both services are national initiatives, they can be contracted to and delivered by different organisations or based in different teams meaning there is still a postcode lottery of sorts. Funding opportunities can be different between regions and there aren’t always services that can be signposted to, or the services on offer are of varying qualities.

While this set-up and role would be a utopia of sorts and would fulfil the NICE guideline recommendation of a key worker, replicating it in the UK would be challenging. Devolution to local authorities and health commissioners would make it hard to guarantee consistency of service and budget cuts mean there are often very few services that can be signposted to. The other challenge is population. The ASD co-ordinator in the Hutt Valley, Wellington, receives on average 10 referrals a month from a population of roughly 110,000; by comparison, the London Borough of Camden alone has a population of 240,000. However, it remains that a key worker or case manager providing local and tailored support would be the ultimate ask of most autistic people and their support circles.

CONCLUSIONS AND UPDATE

Learning from Australia and New Zealand shows that a variety of agencies can provide services and resources that work if they are person-centred and genuinely understand autism. So autistic young people must be involved in the design and delivery of services that are catered to them with co-production engaging the entire diversity of the autistic community. Whatever the sector and organisation, those in charge need to acknowledge that autistic young people are the experts on what works for them and their community and prioritise their voices and experiences. Without their ongoing input, these services and resources won’t be accessible or useful to those who need them.

Shortly after returning from my Fellowship travels, the Covid-19 pandemic began. Using my learning from Australia and New Zealand allowed me to set up online peer support sessions for young autistic people across the country. The learning from the Fellowship also led to my team getting funding to develop the Ambitious Youth Network which has now launched.

www.ambitiousaboutautism.org.uk/what-we-do/connecting-young-people/online-youth-network

The pandemic showed me that the principles I’d outlined for post-diagnostic support are also key to navigating uncertain times and that having a supportive community and safe space is priceless for young autistic people – something that we will continue to prioritise.

• More information and resources from www.ambitiousaboutautism.org.uk

• Post diagnostic support for autistic young people from www.churchillfellowship.org/ideas-experts/ideas-library/post-diagnostic-autism-support-for-14-18-year-olds

ABOUT THE CHURCHILL FELLOWSHIP

The Churchill Fellowship is a national network of 3,800 inspiring individuals whose mission is to find the world’s best solutions for the UK’s current challenges.

Up to 150 Churchill Fellows are funded each year to visit the world’s leading practitioners and projects on a topic of their choice – from social policy to healthcare to education and more – and bring back new ideas for their communities and sectors across the UK.

Any UK adult citizen can apply, regardless of qualifications, background or age. Fellows are chosen for their potential as change-makers, not their past track record or status.

Find out about fellows and their ideas at www.churchillfellowship.org