If you’ve just received an autism or ADHD diagnosis, read this.

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If you’re reading this, you’ve probably received an autism or ADHD diagnosis as an adult.

Maybe you were sent this by a friend, or maybe you were like me 3 years ago and simply Googled:

“I just got an autism/ ADHD diagnosis, now what?”

Receiving a diagnosis of autism or ADHD as an adult can be overwhelming, emotional and confusing.

Here is some advice to help you navigate post-diagnosis life.


Embrace all the feelings (even the ugly ones)

My immediate post-diagnosis feelings are best characterised by numbness, a smidge of relief and a general sense of being unbothered.

“Well, that’s great it’s now on paper!”

I went back to my day-to-day life, as if it was a mere “check” off my to-do list. But as time went on, I began to process a little more, and reflect upon what this new information actually meant to me.

I reflected on the past, spending moments of retrospective curiosity wondering how I’d turned out today if I had been swept up the diagnostic system earlier in life. I started to reflect upon my childhood and teenage years. I felt waves of bitterness and resentful, cursing “The System” in my head for failing my younger self.

I gazed into the future, feeling panicked by the consequences of this label on my life ahead. Getting a piece of paper with the words “autism spectrum disorder” was so easy, but anticipating having to live with this for the rest of my life was harder to fathom.

3 years later, I can gladly say that I feel more at peace with myself.

I would be lying if I said that I don’t have days where I still catch myself saying to myself stuff like: “Wait, does this mean I’m going to be a bad mother?” (spoiler alert, no it doesn’t).

Biggest piece of advice:

Don’t judge yourself for the feelings you have, no matter how irrational they may seem when you say them out loud. Embrace them, write them down in a journal. I look back on my journal entries from that time and can see how much I’ve grown and learnt about myself since. I suggest you do the same.


Should I tell others about my diagnosis?

one of the biggest challenges that many autistic/ adhders face when newly diagnosed, is navigation if or when to disclose their disability to others. the biggest takeaway is that you don’t need to share your diagnoses, whether it is employers or close ones, until you’re ready.

Before disclosing your diagnosis to someone, here are some questions you can ask yourself…

  • What is my intention with telling this person about my new diagnosis?

  • What am I looking to get out disclosing my diagnosis to this person?

  • Based on previous situation, how are they likely to react to this new information?

  • What’s the best possible outcome on me telling them? (eg. strengthening a relationship, accommodations at work).

  • What’s the worst possible outcome?

“To disclose, or not to disclose, that is the question….”

There has recently been an increase in conversation surrounding neurodivergent disabilities. That being said, disability is still heavily taboo subject in some parts of the world, where the words “autism” and “ADHD” still carry stigma in various communities.

Biggest piece of advice:

Trust yourself to know your people best, and take your time when figuring out what and how much to share.


Find neurodivergent communities in your area

One of the biggest differences between being late diagnosed vs. being diagnosed as a child, is that you don’t have the support of your family or educational professionals to help you adjust, in light of this new diagnosis.

For me, I struggled a lot with the fact that as soon as I left the psychiatrist’s office with that sheet of paper, it was up to me to make the changes in my (adult) life to accommodate myself.

I was the one to make the calls to the disability office at my university.

I had to research into my rights to be accommodated in the workplace.

It was on me to find the relevant resources.

I quickly found out that life “post-diagnosis” was a life of increased personal responsibility and advocating for myself, something I didn’t foresee when I sought out a diagnosis in the first place.

Tips on how to find neurodivergent communities in your area:

Even though it may feel like a huge burden, the good news is that you’re not alone.

There are communities of neurodivergent people who have navigated the system before you. So, seek out these communities to learn more on how they navigated life post-diagnosis.

In-person communities:

  • At university: speaking groups facilitated by the university’s Disability Service, Disability Activist groups on campus.

  • At work: ask your HR department to see if your workplace has an employee resource groups (ERGs).

  • General: support / activity groups run by your council/kommune (tip: go on to your local council’s website and find anything to do with “disability” or “accessibility”).

Online communities:

  • Facebook: search “ADHD” or “autism” followed by your city (eg. “Copenhagen”). There are often a lot of groups on Facebook, where you can find opportunities to either meet up in-person or ask questions.

  • Instagram: find neurodivergent content creators in your city or country, they are often a good source when finding a wider neurodivergent community within your area.

  • Reddit: search your city’s reddit page (eg. r/copenhagen), and search for posts on disability or neurodivergence, often times others have searched for the same resources as you!

A community doesn’t need to be a whole group of people that you know personally. It can just be one person who you know or even an online forum. Only you know which type of community that works for you, so go with your gut feeling and get involved!


Celebrate and embrace yourself.

It may feel weird to “celebrate” a diagnosis. The way I see it, when you have received a new diagnosis, it’s an opportunity to learn more about yourself and embrace the person that you are.

Here are some ideas for you:

  • Getting back in touch with special interests that you loved as a kid, but were discouraged to pursue because they were “uncool”.

  • Researching neurodivergent role models with similar interests (eg. Temple Grandin for those interested in science, Talia Grant and Chloe Hayden for acting, YungBlud and David Byrne for music).

  • Read books and blogs written by neurodivergent people. My current favourite book is “Unmasking Autism” by Devon Price.


Conclusion:

Your life, post-diagnosis, may right now feel unknown and scary.

You’re met with an abundance of information, new and unfamiliar systems to navigate, with maybe some unexpected feelings along the way.

Whilst receiving a diagnosis may feel unfamiliar and dark, on the flip side, you can also see it as a moment of empowerment and acceptance of yourself. Choosing to live your life in a way that promotes your own wellbeing and happiness, this is the light.

This journey will be full of both light and darkness.

Right now it may feel like you’re completely in the dark, remind yourself there is so much light on the other side.

Go get them!

Bella Neergaard is a neurodiversity consultant and educator.

She is a late-diagnosed autistic woman with ADHD, based in Copenhagen, Denmark.

Learn about her neurodiversity consultation and educational services here.

Read more about her here.

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