How to Navigate Being Newly Diagnosed as Autistic as an Adult

Reframing Autism - Autism Diagnosis as an Adult Australia

A new Autism diagnosis (or the epiphany that you are Autistic) can be very validating. Some Autists describe it as feeling like “finally coming home to myself”.

However, that same identification might also lead you to question or reassess some things in your life. As you adjust to your “new normal”, it is common to feel upside down, confused or in flux.

Many Autistic people find that, once diagnosed, the relationships in their lives become a big focus, as dynamics in relationships can change.

Some people in your life might not understand Autism, or may only know about it from the harmful stereotypes and caricatures that they’ve seen in the media. The misconceptions around Autism that still permeate many people’s understanding are often due to a lack of knowledge. It may be ignorance, but it can feel cruel and still hurts. You may feel burdened to educate your family, friends, and colleagues.

You’ll also likely begin navigating what “community” means to you, and for many newly diagnosed Autistic people, seeking out neurodivergent communities can be very validating and affirming.

Depending on your support needs, you might also choose to start seeking supports or finding accommodations that can help you thrive in your life. If you are in Australia, it may be appropriate for you to apply to the National Disability Insurance Scheme (NDIS) to secure funding to help pay for these supports.

Equally, though, you may wish to take your time to just “hold space” for yourself and your new clarity about yourself. There’s no rush to do anything right now, as you work through what your new knowledge means for and about you. Each person’s journey is unique to them, and there are no “right” or “wrong” ways to go about processing this new information.

Read more: Learn about being Autistic

Discovering your Autistic identity

Even if you were only diagnosed a few hours ago, you’ve been Autistic your whole life! So, although having a whole new lens through which to understand yourself can feel daunting and perhaps a little scary, realistically, you’ve been getting to know yourself for your whole life. The difference is that now, you have a better understanding of what makes you, you!

There is no right or wrong thing to do at this early stage… many of us who have been diagnosed later in life take some time to reassess some key moments in our past. But before you do that, you might like to take some time to learn about Autism, so you can reflect on the ways that it might have shaped your life.

Autism plays a role in your social skills, communication, sensory perceptions, interests, hobbies and executive functioning – among many other things!

The more research you can do, and the more you can access the experiences of other Autistics, the more “aha!” moments you’ll be able to have on your journey to understanding how to help yourself flourish.

Building resilience and practising self-advocacy is incredibly important for Autistic people – so the more understanding you can garner about your own amazing brain, the better!

Read more: Discovering your Autistic identity as an adult

Disclosing your Autistic identity to others

Whether or not you disclose your Autism diagnosis to the people in your life is entirely up to you, and disclosing your diagnosis can sometimes lead to mixed reactions. Your family and friends – although they love and care for you – may not always know how to react, or may not react in the way that you hope or would like.

Remember, you’re under no obligation to tell everyone (or anyone!), or everyone all at once. Your disclosure journey is yours to control.

Before letting the important people in your life (partners, friends, family and other loved ones) know that you’re Autistic, it might be a good idea to take some time to prepare. For instance:

  • You may wish to consider having some easy-to-read literature on Autism in adults to provide to them. Sometimes this will help to “bust” any myths or misinformation they might have, but sometimes its just easier not to have to explain everything yourself!
  • You might also want to prepare some responses in case people don’t react in the way that you’d hope (sadly, some responses such as, “But you don’t look Autistic!” or “We’re all a little bit Autistic though” or “Everybody is being diagnosed these days” are still common). Having prepared reactions ahead of time may make you feel more confident or better able to navigate any mixed responses.
  • Try to surround yourself with like-minded people who understand what you’re going through. Now might be a good time to find a neurodivergent community – try looking for Facebook groups, or if you know any openly neurodivergent people, you might like to ask for their experiences or advice.
  • Try to make sure you’re in a good mental state before having these conversations. Disclosing your diagnosis can bring up a lot of emotion and be exhausting, so try to make sure you’ve got good support systems (such as understanding people, or a therapist that you trust) and self-care routines in place to look after yourself.

You might also wish to disclose your diagnosis to your employer or colleagues. This can be a big decision, so it can help to research and understand your workplace’s policies and accommodations for accessibility before you have the conversation. You should also be aware of your rights: as an Autistic employee you’ll likely be covered by your national disability discrimination legislation that both protects you and ensures you can advocate for what you need in the workplace. Knowing your rights can help you to feel more comfortable asking for any help you may need to do your job to the best of your abilities.

Read more: About disclosure

Masking and imposter syndrome

So-called imposter syndrome is something most newly (and not-so-newly!) identified Autistics experience at some point or other. It’s that feeling when you wonder if you really are Autistic, or if you’re “Autistic enough”, or you question if the diagnostician made a mistake in diagnosing you. You might fear being called a fraud, or being exposed as not really Autistic at all. For many of us, we experience imposter syndrome when we compare ourselves to other Autistics (remind yourself, we’re all different, and experience our Autism differently), when we are struggling with internalised ableism and stigma (this might be because we feel we’re inherently broken and think that Autism can’t explain our brokenness, or we don’t deserve to have the diagnosis), or when we’ve masked for so long, and so deeply, that we’re finding it hard to find our authentic Autistic selves.

Autistic masking is something that most Autistic people (especially those of us who are late diagnosed) have learned to do in order to survive in the world. In some ways, everybody masks, or changes who they are slightly to meet the demands of different context (e.g., work versus socialising). But Autistic masking is a much more intense – and often detrimental – process. Autistic masking is the (conscious and unconscious) suppression of your genuine self (including your Autistic traits) in order to be safe, conform, fit in and/or feel included in your environment. Masking can take a huge toll on an Autistic person’s wellbeing – mental, emotional and physical.

As you learn more about your Autistic self, it’s important to understand if and how you’ve been masking over the course of your life.

Understanding how masking has impacted you – and what you might have suppressed over time – will help you decide how you want to continue to live your life to embrace all of your uniqueness.

Whenever you feel imposter syndrome, remember this: you’re not alone! Very many of us have experienced the doubts, the worry, the persistent internalised fear that we’ll be exposed as “not really Autistic”. And also remember that you are Autistic enough just as you are – you don’t need to “prove” your Autism to anyone – and you are welcome as you are.

Read more: About masking

Navigating mixed feelings

It’s perfectly normal, and perfectly valid, to having mixed feelings upon discovering that you’re Autistic.

For some people, it’s pure elation and a feeling of coming home to themselves. For others, the dominant feeling can be frustration, guilt or even shame.

However you feel, know that it’s okay to feel your feelings. Your feelings are yours alone and there’s no right or wrong way to feel right now.

It’s our hope that by sharing Autistic experiences and perspectives, you can learn more about yourself and why you’re awesome.

If you’re struggling with how you’re feeling, we highly encourage you to reach out to a trusted professional – a family doctor, therapist, counsellor or psychologist can point you in the right direction and give you strategies to manage any distressing feelings that you might be having. Even trying something like art therapy might help you to process through your feelings!

If you were formally diagnosed as Autistic, your diagnostic professional may have given you some indication of areas in which you may require support.

If you’re self-identified or aren’t sure if or what support would benefit you, speaking with an occupational therapist can help – or even to your GP, if they are neuro-affirming. They can help you identify areas of your life that are tricky, and can suggest some options to make those elements of your life easier.

There’s nothing wrong with needing support or accommodations – in fact, most humans need accommodations of some kind (e.g., wearing corrective lenses for vision, or taking tablets to manage a health condition) and we all need support (e.g., having your car fixed by a mechanic, or your taxes done by an accountant… these people are trained to support you in areas in which you may not have the expertise). Having the “label” of Autism can simply guide you towards getting more effective supports in your life to help you thrive.

What next?

There is no right or wrong way to start on your journey of self-discovery of your own Autistic identity – you can take whichever steps you need and in whichever order you need! Realistically, the journey of self-discovery never ends, so this is just the beginning!

As we learn more about ourselves and embrace our Autistic identity more and more, we will invariably uncover greater ways to advocate for ourselves and our communities.

Here are some possible first steps that you might like to consider, in no particular order:

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Always was, always will be Aboriginal land.

The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Amangu, Awabakal, Bindjareb, Birpai, Whadjak, Wiradjuri and Yugambeh peoples.

We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past and present, for their wisdom, their resilience, and for helping this Country to heal.

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