How to share your late diagnosis of autism & ADHD with others
Receiving a late diagnosis of Autism or ADHD can feel like an enormous revelation. A puzzle piece finally clicking into place that explains so much about our lives. This was certainly my experience, and at times I felt like my whole life kept flashing before my eyes, as I reflected with this new found knowledge and understanding.
But with that revelation comes another challenge – how to share this newfound understanding of ourselves with others in our lives. From family and friends, to those we work for and with. And the truth is, you don’t have to share your diagnosis with anyone that you’re not comfortable sharing it with. What and where you choose to share your diagnosis, and how much you want to share is your decision and choice.
How can we communicate something so deeply personal and complex in a way that not only informs, but also cultivates empathy and understanding?
In this blog, we’ll look at some of the challenges that can come up, when we share our late diagnosis of autism and ADHD, and some things you might like to consider along the way.
Self acceptance and understanding
Before we delve into how to share your diagnosis, it’s important that we first focus on understanding and accepting our diagnosis ourselves.
I don’t know about you, but I was in a bit of a spin when I received a late diagnosis of autism and ADHD. Sharing a late diagnosis of autism or ADHD can feel really daunting, can’t it? I spent the first couple of months processing everything, before I felt I could share. Apart from my mum, I told her prior to both of my assessments, as I needed her to fill in some forms. More on how that went, later!
Having a late diagnosis of autism or ADHD can feel like a new lens through which to view ourselves, providing clarity and understanding about our past and present experiences. Maybe you had some moments of clarity? Moments of suddenly seeing yourself through different eyes? Maybe something else entirely?
Taking the time to process and understand our late diagnosis of autism or ADHD can really help, when it comes to sharing your diagnosis with others.
We must remember, however, that a diagnosis doesn’t change who we are. It simply helps us better understand ourselves. I like to think of it as a precious gift, that has enabled me to realign my life to work for me, not against me!
Reactions to a late diagnosis of autism & ADHD
I really wanted to cover reactions to a late diagnosis of autism and ADHD here, before we go on to look at ways to share your diagnosis.
Reactions can vary widely from one person to the next, ranging from surprise to denial or even relief. Remember, their initial reactions may not reflect their lasting feelings.
How someone reacts to your late diagnosis of autism and/or ADHD is not finite. It may come as a shock to them, and they may have their own story to process. My mum won’t mind me sharing this with you (I checked, don’t worry!). When I was going for my ADHD assessment, I told her because I needed her to fill out some forms. She told me that other than being anxious, nothing really stood out for her, I was just a ‘normal’ child.
However, my school reports said differently! They were littered with comments like ‘easily distracted and needs to focus more’, ‘she can do it if she puts her mind to it, she needs to apply herself more’ – to name just a couple of common themes, and a classic ‘she’s arrogant, but I don’t think she means to be’ (hello autistic me!).
After both my ADHD and autism diagnosis, I’ve spent a lot of time talking to my mum about my life, and the things I have found challenging. She has taken a great deal of time to listen, and to learn about how my autism and ADHD impacts me. And now, she looks back through my life and can see multiple signs and evidence of me being both autistic and ADHD, growing up. She said to me recently “I don’t know how I didn’t realise, or see it”. So, here’s the thing….
In order to process and accept my late diagnosis of autism and ADHD, my mum needed time to reflect on my childhood and life, but also to process her own guilt about whether she ‘should’ have known, or done something differently. But the truth is (and we’ve discussed this MANY times), that autism and ADHD were just not really on the radar 45+ years ago. And certainly not for girls, research and an understanding around autism and ADHD in females has only been studied in the last 10 years, max – and there is still much to done. My traits would still likely fall under the radar at school now! Girls are skilled at masking behaviours from a very young age, making it harder to pick up on any signs.
Patience and empathy are key here. The reason I’ve shared this, is to give you an insight into what might be happening for someone in your life, they might need time to digest the information and its implications, just as you did.
Sharing late diagnosis of autism & ADHD with family & Friends
Deciding who to tell and when can be the hardest part! The fear of rejection or judgement is real, but it’s crucial to remember that sharing our diagnosis is a personal choice.
Consider who among your friends and family will be supportive and understanding. You don’t have to share with everyone all at once. Take your time, and go at your own pace.
I’ve already shared my story of telling my mum, who is super supportive, even though it’s been a big change for her, to understand her adult autistic and ADHD child. I have so much respect and gratitude for how she’s approached this news which, as a parent, has to be pretty big!
I also shared my news with other family members. My dad, love him, said “I don’t really understand it, but OK” – and he pretty much leaves a room whenever I talk about it with my mum. But he is nearly 80, and has zero understanding of autism and ADHD and frankly, I’m OK with that.
I also shared my diagnosis with others, who didn’t believe it and offered no support to me. To say it was hurtful is an understatement and the reaction actually stopped me sharing with anyone else for a while – because the fear of judgement and rejection was huge, at that stage! BUT , when the dust had settled, I realised that their opinion was irrelevant, I didn’t need them to acknowledge or accept my diagnosis for it to be valid. I share more about my experiences in my blog on loneliness HERE.
Please remember that if someone rejects your diagnosis, or is unsupportive, that’s a THEM problem, NOT a ‘you’ problem! It can feel tough and emotional, but try to let it go, it won’t serve you to hold onto that negative experience. I say this with love, and from experience!
Sharing your diagnosis at work
Remember, the goal of sharing your diagnosis at work is to create a supportive and understanding environment that allows you to do your best. It’s about advocating for yourself and ensuring that your workplace aligns with your needs.
Bringing up your diagnosis in the workplace requires a careful consideration of your personal comfort level, your work environment, and the potential benefits and drawbacks. This can be a difficult decision, depending on your employer.
Start by understanding your rights. The Equality Act 2010 in the UK ensures that people with Autism and ADHD are protected from discrimination in the workplace and are entitled to reasonable adjustments. Knowing this can provide you with the confidence and backup you need when discussing your diagnosis with your employer.
When choosing to disclose, you may want to consider:
Timing and Setting: Choose a quiet and private time to have this discussion. You may want to book a meeting with your manager and ask your HR representative to be present.
Preparation: Be ready to explain what Autism or ADHD means for you personally and how it may affect your work. You don’t have to share everything, just the aspects that you feel comfortable sharing and that are relevant to your workplace.
Requesting Adjustments: If you need certain accommodations for your ADHD or Autism (such as a quieter workspace or more flexible deadlines), be prepared to discuss these. You are entitled to these accommodations under law, and they can help you perform at your best.
Sharing Informational Resources: Just like with family and friends, you may want to provide resources that can help your employer or colleagues understand your diagnosis better.
You do not have to share your diagnosis with your work colleagues, if you don’t want to. You can ask your manger to keep this confidential.
Your diagnosis, you choose who to share it with, how and when!
Please remember who you share your diagnosis with, how and when, are all YOUR choices! Do it in a way that feels good for you. Accept that you may receive different responses, but know that the initial responses are not the final ones. Others may take time to process your news.
You do not need to ‘prove’ or justify your diagnosis to anyone. If others refuse to accept what you’re saying, that’s because they have an outdated idea of what being autistic or ADHD is. For those people, I invite them to think differently and use it as an opportunity to educate them on the reality.
Here are some tips to consider, when sharing your late diagnosis of autism or ADHD, which I hope you find helpful.
Think about what you’d like to say:
Expressing something as complex as a neurological diagnosis can be tricky. It may be helpful to write down what you want to say beforehand . Speak from the heart, focusing on how the diagnosis has helped you understand yourself better and what it means for you. If there’s anything in particular you need from them, let them know – it will be helpful for them to understand how they can support you.
Provide resources to help them learn:
Arming your loved ones with reliable information can help them understand your diagnosis. Provide them with resources such as articles, books, or even documentaries about Autism and ADHD. I shared this ADHD video with many people, and it really helped them to understand.
Keep the lines of communication open:
Keep talking to those that you share your diagnosis with. It will help to build a better understanding of you as an autistic and/or ADHD woman, and those around you will benefit from gaining a deeper understanding of you, as you navigate the world, post diagnosis.
Go at your own pace, share as you feel comfortable and remember WHY you’re sharing your diagnosis. Having those around us understand us better can really help to improve our life experiences, and let us shine as our true selves. Choose the people you share your news with carefully, and for anyone that can’t or won’t offer you understanding, compassion and support – consider whether those are people you want in your tribe, anyway!
I really hope you’ve found this blog on late diagnosis of autism and ADHD helpful.
Until next time, stay bold, stay brave and keep shining your beautiful, unique light. We’ve got this!
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