Tips to navigate a late autism diagnosis

I’ve always been better at putting down words on paper than speaking them aloud. But trying to process an autism diagnosis later in life is tricky. A part of me does not recognise the person I was before my diagnosis. And a bigger part of me is still trying to figure out how I was feeling.

Growing up, I knew that ‘something’ was always there. I just never knew what I meant by ‘something’. It turns out that the word I was looking for was autism. Finding out you’re autistic later in life can be overwhelming. And I underestimated just how overwhelming it could be. I thought that I would get my diagnosis. And that everything would go back to the way it was. That nothing would change. Boy, how wrong I was! I found out that I’m autistic last year at the age of 26. And have spent the last year going over every aspect of my life. This blog is some of the things I wish I knew about a late autism diagnosis.

Rebirth Fine Art Print

An Emotional Rollercoaster

There is a lot to say since finding out I’m autistic. However, not wanting to ramble, I want to explain how I felt as an undiagnosed child. Also, why I decided to pursue a diagnosis in the first place.

Growing up, I was known as the ‘perfectionist’. Everything had to be a certain way or, according to my teachers, I ‘would get very upset’. They would tell my parents that I was ‘good in school’, but that would like to see me ‘talk a little more’. But the problem was that I didn’t exactly know how to do that. I remember watching the other kids playing at lunch time and not knowing how to engage with them. Have you ever been in a group where everyone else seems to be getting on better with each other than with you? They are not necessarily excluding or being mean to you. But you still find yourself asking the question, ‘would anyone miss me if I weren’t here?’

Whenever I would get to play, I remember feeling like an outsider. Like I didn’t belong. And I had this fear that they would find out I was a fraud. Or find me weird and that they wouldn’t want to play with me anymore. Whenever I would ask the teachers how to play with the other kids, they would always tell me to ‘just do it.’ Which is not constructive advice. And something that always frustrated me. I knew I had to ‘just do it’. I just didn’t know how. Or they would tell me that I was being ‘ridiculous’ when I would cry over something trivial, like forgetting a notebook or spilling some water. So, that’s what I would tell myself. I was being ‘ridiculous’. Because that was the message I was getting from the world. Everyone else can connect with each other, so the problem must be with you. So, I would tell myself to calm down and minimise whatever I was feeling. Even on days when I could not stop my hands from shaking. Or on really bad days, when I would bang my head off the wall. I now know that these incidents were meltdowns. But, as a child, I just thought that there was something wrong with me.

How I got my diagnosis

I have always been very good at distraction. Especially when I don’t want to acknowledge how I’m feeling. I’ve already said that I always felt ‘something’ was there.

But, like a lot of people, lockdown changed everything. All of my usual distractions were gone, and I was left facing thoughts and feelings that I didn’t want to face. It was also during lockdown that I did an animation course. We were talking about representation in the media one day, especially around disabled people. One of my classmates mentioned that there is a severe lack of representation for autistic people, particularly women. And one of the reasons was that autism presents itself different in women than in men. But all of the research and things we know about autism is based on men. I know I shouldn’t, but I decided to jump onto Google and do some research. I generally don’t like looking up symptoms online because I know that Google isn’t a doctor. But I still went to Google anyways. And found autistic women who were sharing their experience. And the more I read, the more I found myself relating to their experience.

Which was shocking. Like many people, I had a stereotypical view of what autism is. Whenever I would see autistic people in the media, it was always an 8-year-old boy who is non-verbal, obsessed with trains and needs to have strict routines in order to function. Before I got my diagnosis, I did not know that autism could look like me, a woman who can drive, work and socialise.

So, I shut off my laptop and forced myself not to think about autism anymore. And distracted myself with work when things opened back up again. But I found my usual distractions were no longer working. It was hard to think about anything else other than autism. So, I looked up AsIAm.ie and through them found the Adult Autism Practice. They help autistic adults get diagnosed and access supports. I sent them an email and a year later, was diagnosed with autism. There is a lot of unpack when you find out you’re autistic. So, these are just some things I’ve learned over the last year.

Acceptance Fine Art Print

Tips to help navigate a late autism diagnosis

You will grieve for younger you and the life you could have had. And it is perfectly okay to feel this grief. As mentioned, finding out you’re autistic can come with a lot of emotions to sort through. You will be reliving memories you don’t want to and see your life in a new way. There might be a lot of anger over finding out you’re autistic. Some people wonder ‘why did no one know I was autistic until now?’. Between masking and stereotypes as well as other barriers, there can be many reasons why people only find out they’re autistic in adulthood.

You Begin To Explore Your Unmasked Self

You will begin to unmask and get comfortable with your autistic traits. Unmasking can seem scary. For autistic people, masking can be a way to protect themselves from ableists and from living in a neurotypical world. It’s a way to shield ourselves from harsh comments or looks and we use it as a way to fit into society. But it can be scary letting that ‘mask’ go and embrace who we truly are. In some cases, it’s actually safer to mask and hide away our autistic traits. However, masking takes a lot of effort. It is something that autistic people find draining and it is not sustainable. But there is no right or wrong way to unmask. It is something that looks different to every autistic person. Joining autistic groups on social media and listening to other autistic people can be a good way to start unmasking.

Bare Fine Art Print

You Unlearn A Lot Of Stereotypes About Autism

You will learn what autism actually is. There are a lot of stereotypes around autism. Some of them you might believe yourself and need to unpack. And some stereotypes can be very harmful. When you find out you’re autistic, you will have to learn how to unpack your internal ableism. You might think ‘well, my autism isn’t as bad as others’, or ‘if I was really autistic, I would have known by now’. Some people, as well as some medical professional, still believe that only boys can have autism. In order to dismantle this belief and other harmful stereotypes, it is important you listen to actually autistic people. Consume our content, listen to our stories. You will soon realise that autism is not what you think.

You Begin To Live Life The Way You Want To

And finally, you will learn to be kinder to yourself. Like many autistic people, I spend most of my life in shame. I was constantly told that I was lazy, or stupid or just weird when I was really just being myself. And when you spend your life being told something negative, it’s hard to let that go. But finding out I’m autistic has given me my self-compassion back. I was not lazy or stupid, I was just an undiagnosed autistic child who wasn’t getting the supports I needed. As an autistic person, you live in a world that is not fit for you. This world can be a harsh one to navigate when you’re autistic. So, please do not be harsh on yourself. There is no right or wrong way to be autistic. It’s your journey and it is okay to be autistic however you want to.