So you think you're Autistic... now what? How long have you wondered? Have you had time to process or is this brand new to you? It's a lot to take in. Take your time, let it settle, you'll come out of the other side more whole, I promise. If you're reading this, chances are you're coming to this realization later in life, or maybe you know someone who is. Wow, does this answer a lot! Or at least you're hoping it does. It's exciting, relieving, scary, confusing, frustrating, and so much more to learn this about yourself later in life. Are you wondering what to do with this information now? ... Keep reading!
Leading up to the Diagnosis
Each person comes to this diagnosis in a different way. Maybe a friend or family member who you relate to a lot learned they are Autistic. Maybe someone told you they think you are. Maybe you've suspected it for years. Maybe it totally blindsided you when you learned what Autism actually is and that you relate. Whichever way you came to this, I'm glad you did.
If you are like me, you did a deep dive, like a really deep dive, into the Autism world to learn everything you possibly could to make sure this was in fact you. Autism quickly became my new special interest and I haven't stopped learning about it since. It can be very helpful to hear from others with lived experience. You can search the hashtags #livedexperience or #actuallyautistic to hear from Autistic people. This is one of my favorite ways to learn, relate, and feel understood.
After finding every ounce of information to confirm or deny a diagnosis of Autism.... now it's time to make it official. For some they may skip the above and go straight to a professional to be assessed. Others may go through the deep dive and confirm for themselves that they are Autistic, giving themselves a "self-diagnosis." According to the Neurodiversity movement and many who are Autistic, self-diagnosis is completely valid, because who knows you better than yourself? And then finally, others may go through all of the above, are basically convinced they are Autistic, and still need the confirmation from a professional. The bummer is that the final route may lead you to a professional who is not up-to-date on Autism and will deny this diagnosis you re already convinced of. Calling this a "bummer" is probably a poor choice of words, let's try 'devastating' instead. If that was your experience, I'm sorry. I'd be happy to offer a second opinion or point you in the direction of others who are also affirming and aware. There are pros and cons to each route, and I'll share more about that below.
Getting the Diagnosis
You're here... it's time to know for sure! There are three routes to being diagnosed Autistic that I am aware of (at least in the U.S.). I'll call them the formal route, the informal route, and the self-diagnosed route.
This is where you meet with a licensed professional who is certified to perform psychological evaluations. The process may look a little different with each provider, including the material they use to assess. The practitioner will likely give you a series of questionnaires to complete and conduct a verbal interview with you. They may also want collaborative information from family members. They will assess your behaviors, communication, and social abilities. The length of time varies, but it often takes several hours. This could happen all in one day or split over a series of sessions.
The upside to this route is that you will receive a report outlining your results and explaining what the assessor observed. Your diagnosis will go into your medical history and can be accepted by insurance, open the door to other services, and allow for accommodations at work or school. Some of the downsides include likely having a significant wait time before being assessed, paying out of pocket up to thousands of dollars, and meeting with an non-affirming practitioner who denies the diagnosis (not because you aren't Autistic, but because they are not up to date). If you have the means and can find an affirming and aware practitioner, this can be a great way to receive a diagnosis and learn more about yourself.
What I'm calling the 'informal route' is meeting with a licensed provider who is affirming and aware of Autism, yet does not have the training or credentials to provide psychological testing. This is probably some kind of counselor, therapist, or other mental health provider. This process is often tied into the treatment you are already receiving from that provider. You or your provider might acknowledge and question if you are Autistic. From there you might take free self-tests that are provided online through resources like Embrace Autism and discuss this with the provider. Together you both decide if you are Autistic. This is somewhat like the self-diagnosis route, but with a professional to process and get insight from.
The upside to this is the process may feel more validating, less stimulating, give you time to process and ask questions, there is no wait time, and the cost is more accessible. The downside is you cannot use this for insurance or put it into your medical record, and therefore do not have access to other services or accommodations.
The self-diagnosis route is just as it sounds, you are confirming for yourself that you are Autistic. This path, like the others, will look a bit different for each person. You may be the first of your family and friends to explore this. If that's the case you probably do the deep dive I spoke of earlier, gathering all the information you can and relating it to your experience. You may sit on this information for a long time, learning more and more, processing, connecting with other Autistic people, and so on. Eventually you decide for yourself this is you. And then at some point you may (or may not) decide to share this with others.
Another path to self-diagnosis may be having family members (kids, siblings, parents, etc) who receive a diagnosis. You may be apart of their assessment and secretly answering the questions about yourself in your head or maybe you've just learned about their diagnosis. Either way, you know you relate to this person or did the same things they do when you were younger or even now. You know Autism is genetic and you must be Autistic, too.
Whichever scenario brought you here, you either don't have the means to seek the professional diagnosis, do not need the external validation to feel confident in the diagnosis, or simply don't care enough about the label or need any record of it. Any of this is valid, and if you know, you know! The upside and downside to this is similar to the 'informal route'. The additional upsides are that you have no one to invalidate your experience (if you keep it to yourself), you can take whatever time you need, and it costs nothing. The additional downsides are you may not have anyone to process this with, you may not be taken seriously or believed (by those outside of the Autistic community and who do not understand), and you may experience more imposter syndrome.
Processing the Diagnosis
At this point you know you're Autistic. The stages and length of time to process this information varies, and is often woven through the above steps as well. By the time you're here, you've likely processed quite a bit and learned about yourself in a new way. But don't fret, there is plenty more to process! First, we have all the different ways we can process, and second, we have all the things we need to process.
Continuing to learn more about Autism and how it relates to your experience is a good place to start. You can access this information through social media accounts of #actuallyautistic people. There are loads of YouTube videos from Autistic adults sharing their experience of late diagnosis. You can connect with other Autistic people through Facebook groups, Meetup groups, support groups, and other avenues. Talking through this experience, about what you're learning, the emotions that are rising, the questions you have, and so on, can also be helpful. You might find a trusted friend or family member, use Autistic groups, or find an affirming therapist. Through all of this, give yourself grace and compassion!! And take as much time as you need to process it internally and externally. You can tell as many or as few people as you want.
Now, onto the content of what is actually being processed. Is 'everything' a good enough answer? Because, really, we're processing every bit of our life through a new lens. You will likely go all the way back to childhood and reframe many experiences through the lens of being Autistic. And you'll keep doing this from childhood until today, noticing how experiences change when we know part of the 'why'. Other pieces that will emerge in this processing are around unmet needs and trauma we may have absorbed by being Autistic, a range of emotions related to this, how we mask and camouflage, and how the structure of our current life is impacted by being Autistic and vice versa. So Much Processing!
Blossoming with the Diagnosis
Next up, it's time to blossom into who we were meant to be. Chances are you will keep learning, reframing experiences, and adjusting your life to meet your Autistic needs. This is an ongoing processes. You will also continue to unmask more and more, getting closer to your authentic self. There's a mix of feelings that comes with this, but it sure does sound freeing. Processing may continue as you go deeper and heal old wounds and trauma you've collected over the years from being Autistic. Imposter syndrome still peaks its head out every now and then, but mostly relaxes back. You have more confidence in who you are, what you need, and how you interact in the world. Relationships that were not suited for you fade away and a deeper connection with those that really get you and support you emerge. You experience less burnout, less depression, and less anxiety as you unmask and shape your life you meet your needs.
What a fairytale, right? It does feel a bit out of reach and totally overlooks the real barriers that Autistic people face. I get that, I feel it too. And I think Autistic people are better able to read through fluff and BS. I'm here to tell you that I do think it's possible, though. Even for me it feels like an out-of-reach dream, but I'm getting closer month after month. Some days (week, months, years) are harder, some are easier, and this will always be the case. This is not an overnight shift by any means. It will take time, years even, but I know it's out there. The more we come together to advocate and create awareness of Autism, the more in reach this becomes. Maybe spend some time creating your own version of this dream.How would you like to blossom?