Emily Niner explains some of the barriers facing teenagers
seeking support following an autism diagnosis
Getting an autism diagnosis often takes a long time and once it has been received it is not the end, but the beginning of a lifelong journey. Sadly, for young people in the UK who are seeking information and support for a newly received, or an existing, autism diagnosis, there are often very limited opportunities to access help and advice.
Many of the autistic people I work with were diagnosed as teenagers or young people. However, they say they struggled with post-diagnostic support that was tailored to their parents or carers, rather than them. Their diagnostic reports are deficit based – based on a series of milestones they haven’t reached – which can compound an already low level of self-esteem or a feeling of being burdensome. Too often, late-diagnosis and lack of understanding can lead to problems in their education, family or personal lives; they lose confidence and their mental health suffers as they struggle to understand their identity without support.
So why are people sent away with little more than a label? The National Institute of Clinical Excellence (NICE) Quality Standards for Autism recommend that people receive post-diagnostic or emotional support within six weeks of a diagnosis. However, we now that this is happening in very few places. Of the fifteen young people on Ambitious about Autism’s Youth Council, only one young person had received any support of this kind, though they all feel it would have been beneficial.
Their asks aren’t difficult; they want relatable information from autistic peers to help with self-acceptance and understanding what autism means for them. They want to learn about coping strategies, co-occurring conditions and reasonable adjustments.
Ultimately, they want a place or a person that answers their questions. For one young person their diagnosis “felt like everything [they] had ever known had gone” and searching for answers online only made this feeling worse. Just because you have a diagnosis doesn’t mean you suddenly understand yourself or the new terms that come with it. Learning about the
terms that matter – like camouflaging, masking and stimming – and finally having the vocabulary to explain your experiences could make all the difference.
Learning from other countries
Thanks to the Winston Churchill Memorial Trust, I was able to travel to Australia and New Zealand to learn from services for young autistic people. When we talk about post-diagnostic support, it can sound medical and sterile. But it doesn’t need to be pathologised. Quite often, services that aren’t aiming to provide specific post-diagnostic support are the ones that are achieving the most. In some cases it can be helpful to talk to a professional, but all the services I saw working were led by other autistic people or by allies and were much more relaxed and informal. The programmes I visited were based around a variety of areas, with groups focused on: interests; learning new skills such as cooking, budgeting and tech; having fun and socialising; school; and one-to-one peer mentoring. But in all cases the outcomes for young people were empowerment and solidarity in their autistic identities.
Australia has recently rolled out a funding initiative, the National
Disability Insurance Scheme (NDIS), under which you can receive money to buy support services, and access groups, employment, therapies and training schemes. One young man I met had NDIS funding to cover supported employment, travel training, physio sessions and a personal assistant to help him access community and social or activity groups. This
may not seem like post-diagnostic support but ultimately, this holistic approach allows people to thrive, and become more independent and confident.
In New Zealand, there is much less funding on offer. However, each district health board across the country has an autism coordinator to whom you can be referred after diagnosis. This person can support you for two years beyond your diagnosis, refer you to services, provide you with training, and work with you and your supporters on your priorities. Each region of New
Zealand also has a Needs Assessment Service Coordination (NASC) service which can assess your needs, support you with service planning and help you apply for money and resources. These roles help people feel less alone; you know there is someone whose job it is to help you navigate the system and find the best services for you.
Next steps for the UK
While there is some excellent work going on in the UK to support young people post-diagnosis, there is still a long way to go to ensure this support reaches everybody that needs it. Young people want information they can relate to, that can help them understand their identity and reduce feelings of fear and isolation.
Greater awareness of the NICE Quality Standards for Autism is needed, to ensure that more young people receive post-diagnostic and emotional support within six weeks of a diagnosis. Young people say that receiving a diagnosis can be both a relief and something scary; while it is an answer to a question, it is also the start of hundreds more questions. They want others to know it is OK to feel how they’re feeling; in their words, “We want less pity and more support”.
One young person I met in New Zealand told me that “understanding your autistic self gives you a shared language with a worldwide community”. Whatever form post-diagnosis support comes in, it is vital it helps young people feel empowered with knowledge, positive about the future, and supported to reach their potential.
About the author
Emily Niner is Participation
Manager at the charity
Ambitious about Autism.