If you are reading this post, it is most likely because you have heard about the process of getting diagnosed as Autistic in adulthood and want to learn more. 

It’s possible you have already self-diagnosed and are looking to take the next step. Maybe you just have questions and think a formal diagnosis process may be the way to go. 

Our aim with this post and future posts related to this topic is to clear up some of the mysteries and misconceptions so people can make a more informed decision about whether format diagnosis is right for them. 

This post is about receiving a diagnosis and the next steps we might take after finally completing the full assessment process.

As daunting as the assessment process might feel at times, it can be equally stressful to wait for the result, and finally knowing one way or another the end result can bring about a lot of emotion. 

If you receive an official diagnosis, it may also leave you wondering what’s next. After all, an official diagnosis is just one small part of any individual’s personal journey. 

So let’s take a lot at our diagnosis and consider what the next steps might look like.

Autism assessments are made according to DSM-5 criteria and subsequently each diagnosis comes with a different assessed level of support needed. If you receive a diagnosis, you can be assigned one of three levels:

• Level 1: Requiring Support

• Level 2: Requiring Substantial Support

• Level 3: Requiring Very Substantial Report

Another way to think about these levels is how they interact with your needs and the amount of help you might need as an individual to meet your daily needs. 

Someone at Level 1 may face challenges but are largely able to navigate them on their own. Someone at Level 2 may require some degree of regular support to meet their needs. Someone at Level 3 may require consistent daily support. 

The primary importance of the level is the way it informs how you meet your own needs, as well as offering a medical basis for those who might need more significant day to day support resources.

The difference between a self-diagnosis and a formal diagnosis can often be the legal resources that are made available to people who have a medical Autism diagnosis. 

While those resources may not be particularly impactful to every person who could potentially receive a diagnosis, they are still relevant and once you have a diagnosis it is at least worth considering whether any of those options could be beneficial or might be worth keeping on your radar for the future. 

Thankfully Milestones Autism Resources includes a helpful table in their adult diagnosis toolkit that outlines the main benefits that open up to someone who has received a formal diagnosis:

• Protection under the Americans with Disabilities Act

• Reasonable accommodations at school and work

• Access to services through the Board of Developmental Disabilities

• Eligibility for Supplemental Security Income

• Eligibility to open a STABLE Account

If you have gone through the whole diagnostic process, it is likely that you have spent a considerable amount of time, mental energy, and resources on deciding to pursue a diagnosis, finding the right provider, and actually going through the assessment. 

After completing such a big milestone it’s perfectly reasonable to not have an exact idea of what to do with this information now that you have it. Ultimately you will find the answer that is right for you, but where exactly do you start looking? This post from Reframing Autism includes some helpful steps as well as idea for adjusting your mindset around diagnosis. 

Just a few broad areas worth considering when thinking about where to go next might include:

• Learning about the ways you need to navigate a world that is not always accommodating

• Recovering from the trauma of being treated as wrong or broken

• Reconnecting with parts of yourself you may have previously had to hide

• Accepting that the things you find challenging do not make you a failure

• Build a truly supportive support network

• Find community

• Discover who you truly are or who you truly want to be

A formal diagnosis is a big step for anyone who chooses to pursue it in adulthood, and there is no right way to respond to receiving news for something you may have suspected or thought about for years. 

We hope this post and other related posts have offered some helpful anchor points for consideration based on where you are in the process and where you hope to go in the future. 

If you received a diagnosis in adulthood and wish to talk about your journey or if you want us to cover this topic in more depth then we would love to hear from you! Just drop us a line at hello@autismgrownup.com and keep an eye out for more adult diagnosis resources.