Being diagnosed with autism can be an emotional and overwhelming event, but with time, understanding, and support, you can successfully navigate your new reality
Autism spectrum disorder (ASD), or autism, is a neurological condition, or developmental disability, driven by brain variations. Due to the breadth of its characteristics – including a variety of interests and stims – autism presents differently in individuals. People often remain undiagnosed for a number of years, due to lack of awareness, limited assessment accessibility, or by mastering the ability to mask and hide certain common autistic traits.
Receiving a diagnosis can be an extremely overwhelming process, often involving hours of assessments and months of waiting to reach a final conclusion. For some, the result may be expected. For others, the formality can come as a surprise.
Counsellor Louise Brown compares an autism diagnosis to rewatching a TV series. “You have already seen the final episode, where everything is explained, so going back and rewatching it with this knowledge means everything makes much more sense.”
Viewing previous life-memories through this newly-discovered lens doesn’t change what happened, but it can change our understanding and how we feel about it, she says.
There is no correct way to react or feel upon receiving a diagnosis. Depending on your individual level of prior understanding and preparation, it can be an emotional realisation.
Louise notes the negative emotions that can arise, including “feelings of grief as we look back on how different our lives might have been if we, and those around us, had known this information earlier”. Others may question the validity of self-knowledge, and whether it should be trusted. As Louise puts it: “If we missed being autistic, what else have we not seen?”
The most important thing is to allow yourself adequate time to process the news. “We need time to process and integrate this new knowledge about ourselves, to curate a life that is supportive of our needs, and nourishes our true selves.”
Part of this process means understanding your “individual autistic profile”, which is often not considered during the assessment, but is invaluable to navigating a new normal, as well as identifying and understanding your needs.
Louise mentions looking at “sensory processing, hyper/hypo awareness, executive [dys]function, [and] any co-occurring conditions”. High-maskers may find this is a lengthy process, as many learn to ignore the messages from our body and brain in order to “fit in” with neurotypical expectations. Many women with a tendency to “fit in” socially, often miss common signs.
It can be worth knowing that a formal diagnosis is not always attainable, but the neurodivergent community often welcomes self-identified autistic individuals.
What changes after a diagnosis?
Louise says that as you gain comfort in establishing your personal autistic identity, you begin to acknowledge needs that were often ignored, and may appear “more autistic” to others, allowing your mask to drop. You may be inclined to wear more sensory-friendly clothing, and avoid uncomfortable sensory experiences, or ‘stim’ in public more often. Stimming is repetitive behaviour such as rocking or hand-flapping.
“Once we understand our neurodivergent profile, and how to attend to our own needs, we move towards acceptance,” explains Louise. “And then we can give ourselves permission to meet these needs.”
Sharing your diagnosis
You may decide to share your diagnosis with people around you. Each individual may choose to do this at a different pace, or benefit from gaining an enhanced self-understanding first, so there’s no obligation to do this immediately, or before you’re ready.
Louise explains how obtaining security in her “autistic identity” encouraged her “to slowly expand the number of people [she] spoke openly with about it” over time. Unfortunately, we can’t control the response of others when disclosing a diagnosis. “If we are already feeling destabilised, this can leave us in a potentially vulnerable position,” she notes.
Louise advises to start with the people who feel safest to talk to, whether this means a close friend, family member, acquaintance, or stranger. Some people share anonymously online, leaning into the #actuallyautistic hashtag on social media.
Everyone has a different understanding of ASD, so those with an outdated understanding may repeat hurtful things, even when trying to be understanding. So it may be worth establishing a plan to exit the conversation if you need to. You may also wish to compile resource suggestions, as it can be overwhelming, feeling you have to educate others about ASD generalities.
Should I request support at work?
Not everyone will feel they require support at work, and others will choose to not disclose their diagnosis. If you feel you require support, Louise says a formal diagnosis means you are covered by the Equality Act, leaving your employer responsible for making reasonable adjustments. Whether or not you choose to request changes, seeking support can help identify “ways of working that work for us”, says Louise.
How to support a loved one who received an ASD diagnosis
If your colleague, friend, or family member recently received an autism diagnosis, there are many ways to support them. Especially by making yourself available to listen throughout the process.
Refrain from using unhelpful phrases that discourage them from speaking about their experience, such as denying their diagnosis, telling them they “don’t look autistic”, or “don’t behave” like another autistic individual you know. If appropriate, help them celebrate their diagnosis.
Most importantly, remember that they, as an individual, have not changed. Louise says a diagnosis provides a “new understanding, which might help them navigate life more easily”.
Give the person time to explore what the diagnosis means for them. If they were not previously self-diagnosed, they are likely still discovering and learning for themselves. Changes you may notice are often the person readjusting within their new identity. In a safe environment, they may feel comfortable to unmask in your presence.
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