How to Deal With a Late Autism Diagnosis

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Feeling overwhelmed after a late Autism diagnosis? You're not alone. Check out these tips for dealing with a late diagnosis from Weird Sensitive Creatures.

So, you’ve gotten a late Autism diagnosis, meaning you’re autistic! Congratulations and welcome to the family. Seriously, being autistic is awesome.. I would know, because I myself am autistic! 🙂

Hi, I’m Katie and I got a late Autism diagnosis at almost 25 years old. I’d learned I was autistic three years before, but having it officially diagnosed has been incredibly validating. Even taking time to educate myself about Autism in the years leading up to that point completely changed the way I viewed myself and the world.. and in a very good way.

Learning that I’m autistic has freed me to be myself in a way I’d never been able to do before. It’s shown me that I’m not always wrong, and sometimes other people are.. and sometimes I’m actually right. I’ve learned how to work with my brain and not pressure myself to live up to a neurotypical standard I couldn’t fit anyway. I’m beyond thankful for this journey and everything it’s taught me about myself.

A late autism diagnosis isn’t always easy, but it’s an incredibly rewarding journey.

Still, my late Autism diagnosis hasn’t been without it’s challenges. I in no way grieve being autistic, but that doesn’t mean that navigating a late Autism diagnosis has been easy. In the last few years, I’ve felt pain, joy, grief, gratitude, anger, and more. When I first learned I was likely autistic, my first thoughts were, “Great, well this just confirms the vague fear I’ve always had that something about me is inherently broken.” That didn’t feel like a significant fear for me before.. but that was because I didn’t want to face it. So, I tried to bury it away as much as I could.. because, I was supposed to be normal, right?

A late Autism diagnosis is often difficult to navigate, but it’s also incredibly life-changing and rewarding. After spending the last few years understanding myself and my neurodivergent traits, I think I’ve done a pretty good job of making the most of my late Autism diagnosis.. and I want to help you do the same! That’s why I’m sharing everything I’ve learned about navigating life as a newly diagnosed autistic adult in this blog post.

Here’s what you’ll learn:

How to care for yourself after getting a late diagnosis
Tips for properly grieving your late diagnosis
What you can be thankful for now
The best ways to learn about Autism

how to care for yourself

A late Autism diagnosis is kind of a big deal. That’s why it’s so important that you take time to properly care for yourself right now. You’re probably learning a lot about yourself now and it might be a little overwhelming. You need to give yourself a break and do whatever you need to do for you.

surround yourself with supportive people.

You need people in your life who understand your Autism and who are going to support you through your late diagnosis. Of course, you love your family and friends, but all of them might not understand Autism. They also might not be capable of giving you the support that you need. This was certainly the case for me when I learned I was autistic a few years ago. Some people in my life still don’t get it at all.

At the very least, joining online Autism support groups really help a lot (Facebook groups are especially good for this). Finding autistic adults to follow and interact with on social media has also been a huge help to me.. see more about this near the end of this post when I talk about the importance of Autism education.

I’ve been really lucky to develop more friendships with people who fully accept me and my neurodivergent traits. Having these supportive people in my life has made all the difference for me. If you’re still struggling to find supportive friends like this, don’t give up!

Find online Autism support groups specific to your area, and see if anyone is down to meetup. Try searching for specific Autism meetup groups near you as well. MeetUp may be a great place for this! Also, local colleges often have Autism peer groups. Most of these groups happily welcome new members even if they aren’t attending the college.

give yourself permission to not focus on a lot right now.

There’s never been a better time to give yourself permission to do this.. seriously. You don’t want to also have to deal with serious burnout on top of everything else!

You know what you can handle, and there’s no reason to stress yourself out by doing too many things at once. Happily decline as many social invitations as you need. Post pone major projects and obligations if you’re able to, and if you feel like they’re draining your energy.

Your health and well-being always come first. After you feel you’ve spent enough time resting and caring for yourself, you can get back to doing more things again.

make peace with yourself exactly as your are.

This took me about three years to learn. Learn from my mistakes, and please, just accept yourself right now, exactly as you are.

For so long, I didn’t have peace with the fact that I’m a twenty something autistic girl still living at home. This was such a huge insecurity for me for so long. I hated the fact that maybe my situation could’ve been better if I’d only learned I was autistic sooner. I never knew why I struggled with motivation as much as I did and why it was so hard for me to accomplish anything.

After learning that I’m autistic, it all finally made sense. But, I was too busy shaming myself and feeling insecure about my situation to even begin to accept it. This only made me feel more shame, which only depleted even more of energy, and made it even harder for me to begin changing my situation.

I finally made peace with it last year.. and now, I only wish I’d done it sooner. But, I can’t change anything about. I can only be thankful that I finally did, and continue to take steps towards achieving financial independence. Now that I don’t have shame weighing me down anymore, it’s gotten much easier to make real progress in my life.

start unmasking only when you’re ready.

I’m sure you’ve probably heard about masking and unmasking by now. But in case you don’t know, masking is when an autistic person either consciously or subconsciously hides autistic behaviors to conform to a neurotypical standard. While masking helps autistic people appear ‘normal’ and gain social acceptance, masking doesn’t come without a cost. Prolonged masking leads to stress and burnout, which then leads to increased levels of anxiety and depression.

Unmasking happens when an autistic person recognizes the mask they’ve created and then starts showing the world the person that was always there behind the mask. Unmasking is a different experience for everyone. It often means giving yourself permission to explore whatever interests you, avoiding uncomfortable eye contact, and saying ‘no’ to social events you won’t enjoy. If you want to learn more about unmasking, you can read my blog post, ‘Unmasking and Reclaiming Creativity as an Autistic Adult’.

when you shouldn’t unmask

While I’ll always be a huge unmasking advocate, I don’t believe unmasking is always the best or safest choice. It took me years to get comfortable enough to start unmasking. I had to be fully okay with myself and my autistic identity before I was brave enough to show the world who I really was.

Some of you may be in stressful work environments where masking is the only way you know how to survive. Or, maybe you’re in an abusive relationship, and unmasking could put you in even more danger (if that’s you, make leaving that relationship safely your top priority.. you can unmask after you’ve made it to a safe place).

These are just a few examples of scenarios where unmasking isn’t a good idea yet. Your well being and safety should always come first. Don’t feel like you’re being inauthentic for wearing the mask a little bit longer if you need to. You’re doing just fine, and when the time is right, you can begin your unmasking journey.

Unmasking is a beautiful, rewarding experience, but it doesn’t come without a lot of work. Tread lightly and unmask only when you feel comfortable doing so.

how to properly grieve

Being autistic isn’t something I grieve – it’s something I celebrate. But even so, I believe there’s tremendous grief to be felt to only be learning something so life-altering about yourself at a later age.

We can’t go back in time and get an earlier diagnosis, and we definitely shouldn’t waste the time we have left by dwelling on the ‘what if’s’. But, I do believe we should allow ourselves time to process grief. After all, it’s only healthy.

let yourself feel as much as you need.

Just because you know you can’t change the past doesn’t mean that you shouldn’t let yourself feel whatever it is you’re feeling about it.

Allow yourself to process all of your feelings. Don’t apologize for them, don’t judge yourself for them, don’t focus on the irrationality of them. You don’t have to act on these feelings.. you just need to feel them! Feel as much as you need for as long as you need. Your feelings are a part of you.. and if you don’t first allow yourself to acknowledge them, they’ll probably just get buried.. and then that really won’t be good.

Feel all you need to feel. After you’ve done that, you can start sorting through your feelings and making sense of them.

Acknowledge your struggle and grieve for the you that might’ve been.

You definitely don’t want to get stuck in a cycle of doing this.. but you do want to acknowledge how much you’ve unnecessarily struggled up until this point.

As late diagnosed autistics, many of us have lived our lives carrying intense burdens that neurotypicals could never imagine. But, because that’s the only ‘normal’ we knew for so long, those burdens just feel so natural.. but they aren’t.

It’s not natural to feel guilt and shame for not being able to make eye contact with ease, or at all. We should’ve never felt pressured to hide our stims and still feel shame for doing them privately. We should’ve known why we could never maintain conventional success, or why we could never achieve it at all.

Acknowledge that you’ve struggled a lot because of your late diagnosis. Mourn for the you that you might’ve been today, if only you’d known sooner.. but don’t get lost in those feelings. Feel them, and use them to be kinder and more understanding to yourself right now. You’ve been through so much, and you deserve to let yourself know that.

give yourself a lot of time to rest while grieving.

Grieving is necessary, but so exhausting. I highly recommend doing all that you can to not overwhelm yourself during this time. Give yourself as much time to rest as you can. Do relaxing activities that comfort you. Get plenty of sleep. Love your family, friends, and pets.

Also, make sure you drink plenty of water.. especially if you’re as much of a crier as I am. Your body will need it even more during this time.

what to be thankful for

Gratitude is such an empowering thing. Yes, navigating a late Autism diagnosis is really hard sometimes.. but it’s nothing compared to continuing to live a life never understanding yourself. Give yourself plenty of time to grieve. But as you grieve, leave plenty of room for gratitude. It will change your life. 🙂

Embrace the gift of seeing yourself exactly as you are.

Do you realize how easy it may have been for you to live your entire life never knowing you’re autistic? I think about that all the time.. and it scares me to think that could’ve very well been my reality.

I wish I could’ve seen my autistic self sooner, but I’m thankful that I’m getting to see her at all. My late Autism diagnosis wasn’t ideal, but it’s ultimately giving me the chance to see, accept, and own my true self.. something I never would’ve gotten the chance to do otherwise.

That’s my perspective. It’s not about all the time you lost, it’s about focusing on all the time you have left. Whether your late Autism diagnosis happened in your late teens, twenties, thirties, forties, or even later, be incredibly thankful that you’ve had the opportunity to see your true self at all. Some people never do.

be thankful that you get to spend the rest of your life living in your truth.

Think of the life you would’ve probably continued to live if you’d never learned you’re autistic. I bet it would’ve been one filled with lots of masking, which would’ve meant even more anxiety and depression. I know that’s what my life would’ve liked.. and I feel overwhelmed with joy when I think of how different it is now, and how it will only continue to improve.

When I think about the fact that I no longer have to pretend to like eye contact or force eye contact with everyone, I feel so happy. I’m so thankful I no longer feel pressured to always be bubbly and energetic because it’s ‘what’s expected of me’. All of the little things we do to mask add up, and when they do, they take a huge toll on our mental, emotional, and physical health.

An Autism diagnosis isn’t a reason to grieve. It’s an invitation to step into your truth and start living a happier, more authentic life. It’s a reason to celebrate and a be thankful. Thankful for the gift of seeing your true self and having the opportunity to create a life that works for them.. not the masked person that you created to please other people.

be Thankful and proud of how far you’ve already come.

You may not have found yourself in the best of circumstances after your late Autism diagnosis.. I relate. I only got a professional diagnosis last year, but I self-diagnosed myself as autistic three years before during a very dark time in my life.

My dad was dying from ALS. My now ex-boyfriend and I were going through a rough time. I was struggling a lot in general. But, I was especially struggling with motivation and employment.. and then add the realization of all of my mental health struggles on top of that. I was very overwhelmed to say the least.

I wasted years feeling shame for how much further I could’ve been, if I’d only gotten a diagnosis and the right support early on. Maybe I’d have a solid career by now and wouldn’t still be living at home. Or, maybe I’d have a healthy, happy relationship. Maybe I wouldn’t still be as socially awkward and anxious as I am now.

Please, if you’re a newly diagnosed autistic reading this – learn from my mistakes and don’t beat yourself up. I had those kind of thoughts all the time, and all they did was drag me down even further. You can’t help that you’re only understanding yourself now, and you don’t need any unnecessary pressure either.

Yeah, you could’ve been further along in your life and achieved more.. but you also could’ve been doing so much worse. You’ve done your best with you knew, and you’re still here today. That’s a miracle in itself and deserves so much celebrating.

educate yourself.

find autistic adults to follow on social media.

This has been instrumental in improving my mental health. Not only has it connected me to so many other awesome aspies around the world, it’s served as a wonderful educational resource for me.

Following other autistic adults has given me the gift of seeing other people with brains like mine. I’ve been learning so much about Autism in the last few years thanks to everything I’ve been learning from autistic content creators on Instagram, Pinterest, Youtube. and Facebook. Twitter is also a great place to connect with those in the neurodiversity community.

To find neurodivergent people to follow, try searching for Autism or specific topics related to it that you’re interested in.

join support groups

Whether online or in-person, support groups are incredibly important. Personally, I’ve only ever joined online support groups from Facebook. I joined one Facebook group for autistic women a few years ago when I knew very little about Autism and wanted to learn more about how it was unique to me. In this support group, I was amazed by how strongly I related to these women, their struggles, and their quirks. After being in the group for a while, I no longer had any doubts about being autistic. It definitely gave me the confidence I needed to pursue a professional diagnosis.

read books or listen to podcasts about neurodiversity.

So, I haven’t read any books about Autism yet, although I definitely plan on it. But I have listened to quite a few podcasts about Autism and neurodiversity! I’m a big fan of podcasts, because I can listen to them as I’m going about my day and still be learning things.

Hearing other autistic adults speak about their experiences on podcasts has been so helpful for me. It’s helped me understand myself more and remember that I’m not alone. In my darkest moments, I’ve been encouraged by stories of autistic people who also struggled, but never gave up, and achieved their dreams.

Whether you prefer reading or listening, it’s so important to educate yourself about Autism and learn from other autistic adults.

Neurodiversity podcasts I recommend:

conclusion

A late Autism dignosis can be very overwhelming, but it only gets better as time goes on. At least, that’s what I believe anyway. I’m wildly optimistic and usually see good in everything. 🙂

You might be struggling a lot right now, but your story isn’t over yet. You now get to live the rest of your life with a deeper understanding of yourself you never would’ve had otherwise – and that’s pretty fucking awesome.

C.S. Lewis once said, “There are far better things ahead than anything we leave behind.”

I think a lot about my late Autism diagnosis when I hear this quote. I think of all masking, confusion, misunderstanding, and pain that never knowing I was autistic brought, and I feel so grateful to finally have the answers I never knew I needed. Much better things have definitely come into my life since realizing I’m autistic, and I believe the same can happen for you. 🙂

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