What to Do After an Autism Diagnosis: A Guide for Adults

You finally got you Autism diagnosis. Now what?

When you get diagnosed, nobody hands you a roadmap. No one hands you a folder with: Autism 101.
It was like that for me. My questions were answered, but they were replaced with more questions.
I also had no idea that, while I had received my diagnosis, that I would be struggling to even comprehend the diagnosis report. I had no idea how it affected me. I didn’t have this blog or any other source of knowledge serving as a guide. Here’s what I wish I had known.

Give Yourself Time to Process

It’s ok to feel relief, grief, confusion, or all three. I felt major relief and confusion. Because it took me until the second psychologist (more or less) that I found out I may be on the Autism Spectrum.
Yet, I didn’t suspect I was on the Spectrum to begin with. I thought something was fundamentally wrong with me. When in reality, my brain processed information differently and different aspects of me and my brain (and its functioning) are just different.

The first mistake I made is wanting to celebrate receiving an answer to my huge question. I wanted to tell friends and family immediately. But you don’t need to tell everyone immediately. Take your time processing your diagnosis and when you’re ready, only you and no one else, you can start telling people closest to you and fan out. But, only tell people that you trust with the information. Do not tell people who have upset or hurt you or who you think may not even be respectful of your diagnosis, let alone be accepting of it. So, start with accepting and respecting the diagnosis, yourself first.

The Support Gap (And Why It Exists)

Getting diagnosed doesn’t automatically mean you’ll get the support you need immediately.
I got some suggestions and recommendations from the center I got diagnosed at, with where to look for help and what to look for. But since I couldn’t get past the initial numbers and initial report, I never got to that part.

When you’re looking for help, you’ll be faced with waiting lists. I’m curently on a waiting list for 10 months and I tried to get on a waiting list for an ASD housing project. Alas, I didn’t have the benefits needed to qualify, so I never got a response. A lot of the help you’ll need in your daily life, will result in getting on waiting list after waiting list. That’s reality of it.

Because, the system isn’t meant for adults. It’s meant for children. A lot or sources out there on the internet will be mentioning ‘children’ or ‘kids’ quite often. But the thing is… Autism doesn’t get miraculously cured at the age of 18. As an adult, you’re still Autistic. But the mental health/care system isn’t built for Autistic adults.
Most clinical or official sources out there, mention care plans ‘for your child’. They don’t realise that the moment you’re an adult, the Autism diagnosis is still as valid as ever. It’ll just affect different aspects of our lives than it did as children. Because our lives have changed. Children don’t need to worry all day about reaching deadlines or meet a monthly quota. Adults do. Living with Autism as an adult is, in my opinion, worse.

As a child, the world is different. You worry about birthday party invitations, whether or not you’ll be Puzzle Queen or if you’ll manage to speak in front of the class during a presentation.
As an adult I worry about my income, my job or the lack thereof, whether or not I’ll be able to survive on my own. Because even though I’m 29 and still living at home, I’m also painfully aware of the fact that I’m an adult living at her parents’ house, when most of my peers have been living away from their parents and the annoying amount of rules they must have had. But I know that I’ll reach my goals. One step at a time. Even if I feel like giving up most days.

What You Can Actually Do Right Now

Learn about Autism from autistic people. Read books, blogs (like mine), and visit social media accounts of actually autistic people. My blog (autibrainblog.com) may be a resource you can check out frequently.
A book that I recommend: ‘But you don’t look Autistic‘ (Maar je ziet er helemaal niet Autistisch uit) by Bianca Toeps.
It’s a great read and it also has a list in the back of potential autistic traits you may relate to. The hashtag #ActuallyAutistic may be a helpful resource as well to find online peers. Some do joke or make fun of their diagnosis, in order to cope. Others, genuinely post helpful stuff!

When it comes to your peers, there are multiple social media platforms out there you can check out. Reddit has a few subreddits (or communities) that can be helpful to navigate the struggles at first and gather some advice from others on the Spectrum. Another helpful recommendation, I think, are Facebook groups. If you want to remain anonymous, some Facebook groups allow you to post anonymously. Which may be helpful if you know your family and friends often check out Facebook and you’re experiencing a particularly tough day.

Usually, the warmth of a community of your peers is a lot more helpful than talking to professionals. You’ll always have that divide of the patient-doctor relationship, which falls away when you connect with peers. You can talk less formally and in a less formal setting among peers then you would at a psychologist’s office.
You can’t really invite them for tea or drinks afterwards, now can you? However, with peers and a community built by peers, you can hang out after meetings.

Start noticing your patterns. What triggers your sensory overload? When do you need to unmask? What accomodations would help you out? Keep notes of your needs and when you do access support. Track what helps and what doesn’t help you at all. I, for example, have started to track my waiting lists and steps to get the help I need in notebooks. I also keep a diary or a notebook with short moments of feelings in a notebook. Not really a diary. But since I go to a psychiatrist once a month, they have an overview of how I have been feeling since the last time we spoke.

Practical Self-Advocacy Steps

This may be a controversial tip, but use ChatGPT (free plan or not) to help you with your diagnoses and serve as an Autism Coach while looking for one. Ask ChatGPT for some clear and understandable tips it can give you while you’re working on getting professional help.

You can also ask around for organisations and non-profits that specialise in people with Autism, ADHD and similar disorders. I have asked a non-profit to help with filling in my day for example, by getting me out of the house for a few hours. Even if it’s just a few hours, I’m not 12/7 cooped up inside.

Another tip I have is: Get on those waiting lists as early as you possibly can! The faster you’re on the waiting lists, the faster it’s your turn. And when you get your appointments, make sure you have a note with you with your request written down. You can ask ChatGPT to help you formulate it if you have trouble with formulating your question yourself.

While you wait and have signed yourself up for a million waiting lists, it’s helpful to create a support system of friends and family in case you need them. Some of the closest people in your life can be a great source of help while you wait.

Managing Expectations

Now that you’re diagnosed, it’s easy to get carried away.
I know I got impatient when I got my answers! I expected to receive help right away. Like the following week.

But, a diagnosis may explain things, but it doesn’t “fix” things. Your progress isn’t linear, it’ll have its ups and downs.
Also, some people won’t understand what you’re going through, what your diagnosis means, etc. And that’s ok.
You’re still figuring this out, and that’s normal.

Conclusion

If you’re feeling lost, you’re not alone. I felt lost. I still feel lost sometimes. But, with this blog, I hope I can be a resource of peace and stability for those newly diagnosed. Your progress is yours, it won’t be fast and it won’t be linear. But small steps are still progress.
If you’re reading this, I’m guessing you’re newly diagnosed. Hello! And welcome! If you’d like, you can explore my other posts and leave a comment.

I’ll end this post with a question: What helped you after diagnosis? Share it in the comments.