Learning Disability Today
Supporting professionals working in learning disability and autism services

What is the best way to share and respond to an autism diagnosis?

"How do I tell you I'm autistic?" is a common question people ask themselves, having received a diagnosis. "How should I respond?" is an internal dilemma that sometimes runs through the mind of individuals when someone they know shares their condition with them. Here we consider these questions and more.

Diagnoses are designed to indicate appropriate and necessary adjustments for someone with a learning disability, autism or condition. In identifying symptoms and examining behaviour, it’s a way of collecting together and recognising how similar experiences respond best to different kinds of support. However, it can be difficult to know when and how to disclose a new diagnosis. 

“For those who don’t want to ‘out’ themselves as having a particular diagnosis, it can generate a challenging dynamic of expecting support without necessarily asking for it.”

Why do we share a diagnosis?

Disclosing your diagnosis can be a really useful way of communicating what accommodations you might need to make your work, place of study, home life, and friendships simpler and more accessible. Some people are happy to offer their diagnoses up to those immediately around them to help explain certain behaviours, or to make it clear what kind of support they need. In a similar way, equality monitoring forms often ask you to disclose anonymously if you consider yourself to have a disability or long term condition. Both are useful ways of communicating access requirements, but it’s not always that easy.

Why do some people choose not to disclose their diagnoses?

There are many reasons why people sometimes aren’t ready to claim and disclose invisible and less “obvious” identities; associated stigmas, prejudice, judgement and disbelief all play a part in the need for privacy. Autism is often diagnosed on grounds of behaviour, and when that behaviour isn’t clear to those around us, it can be surprising or unexpected to hear that someone identifies as autistic.

For those who don’t want to “out” themselves as having a particular diagnosis, it can generate a challenging dynamic of expecting support without necessarily asking for it. Disclosure can be really useful and liberating. Being clear about your needs, access requirements and reasonable adjustments is an important step in getting the right support, but it can be really challenging to share something that can be met with doubts or judgement. 

What does it mean to “pass” as neurotypical?

As complicated as it might be to “pass” as neurotypical, it’s ultimately a privilege to be accepted in spaces that aren’t designed for marginalised people. Historically, only those with very clear symptoms were diagnosed with autism, a system that overlooks people who experience significant distress but don’t always demonstrate it explicitly, outwardly, or in public. 

Being autistic often involves a draining process of masking. It’s easy to be read as neurotypical when you spend time and energy imitating gestures and hiding behaviours that aren’t accepted in regular society. Like all conditions and disabilities, autism exists on a wide spectrum, presenting in many different ways. Women are vastly overlooked in autism diagnoses, it’s not unusual for a late or overlooked diagnosis as they “perform” non-autistic behaviour, and experience melt-down and distress in different ways, often in private.

Like any community, autistic spaces are designed to welcome and include all neurodivergent people and their allies. When autistic identities aren’t explicitly visible, it can make it difficult for others in the same group to recognise or acknowledge all members as having a similar diagnosis or shared lived experience. Objectively, the lived experience of those with symptoms that align with the traditional presentation of autism are very different from the reception of those with less obvious appearances. Neither is more valid, and one does not take away from the other.

Why is disbelief of someone’s conditions and disabilities so damaging?

One of the hardest responses to hear is: “Really?”. It’s a damaging erasure and dismissal of diagnosis and difficulty. It’s a natural response to be surprised that someone experiences a disability or condition when they don’t explicitly demonstrate the symptoms or consequence, but it’s very hard to hear that someone doesn’t believe you. It’s very important not to expect people to explain or convince you of their conditions, and to trust their own identity. We are all experts in our own lived experience.

What is the best way to respond to someone disclosing an autism diagnosis? What would you want to hear?

When disclosing, it’s important to establish whether or not all those involved are in a place to hear something they might find challenging. It’s good to offer a verbal check-in to give everyone an opportunity to opt-out

In general, it’s important to acknowledge that someone has confided in you with sensitive information, and to offer support in a considerate and transparent way. Some of the best responses begin with “thank you for trusting me”, and end with “is there anything I can do to support you?”. It’s natural to want to know more, but there’s a difference between curiosity and genuine interest. Asking questions can be intrusive, sometimes the best thing to do is to read, listen, and learn about diagnoses without burdening the person to educate you. Saying that, the best resource is lived experience, and taking time to listen to what they feel comfortable sharing is a crucial stage in a positive disclosure. 

Sharing a diagnosis with someone is a demonstration of trust. As intimidating as it can be, it’s a really great way of connecting with people, and establishing the kind of care you expect, deserve, and need in an uplifting and supportive environment.

METTE is a writer, collector, and curator working at the junction between print, audio, and interdisciplinary projects. Receiving an autism diagnosis at age twenty one she has a vested interest in representation and accessibility.

Share your thoughts with us @LDTonline on Twitter and read Mette’s other recent articles on autism here:

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