Empowering Guide for Adults Newly Diagnosed with Autism
Understanding and Navigating Adult Autism: From Diagnosis to Moving Forward
Adults diagnosed with autism often find themselves navigating a landscape with significantly fewer resources and support systems compared to children. While there has been growing awareness and support for children with autism, adults often face a lack of services, support groups, and tailored guidance. This article aims to bridge that gap by providing newly diagnosed adults with practical advice, resources, and an understanding of what it means to be autistic. From understanding the initial emotional impact of the diagnosis to seeking specialized therapy, joining support groups, and learning effective coping strategies, this guide aims to empower adults with autism to embrace their unique qualities and live a fulfilling life. Remember, a diagnosis of autism in adulthood can be a turning point, providing a new lens through which to understand past challenges and a roadmap for the future.
Some of the first questions that need to be asked when someone is finished with an autism diagnosis are: What do I do now? What comes next? What are my next steps?
Sadly, when I was diagnosed with autism, I didn’t know enough to realize there were questions that needed to be asked, let alone actually asking relevant questions.
Questions were asked, though it was Erin who did the asking. Since I was already in therapy and Erin knows my personality, she asked the neuropsychologist questions about therapists with criteria specific to me. The doctor offered to have another appointment if I had questions in the future, but by that time I’d moved on to other things and had other needs.
For adults, and this is mostly about being an adult who has been diagnosed as an adult, there are often mitigating circumstances that have led the individual to seek answers and pursue an autism diagnosis. The reasons can include:
Problems with relationships
Problems with employment
Misdiagnosis
General observation
Realization of personal differences
And so on…
These are reasons to begin looking and, often, when trying to write replies (on Reddit) for someone asking a question, I’m curious to know if they’re officially diagnosed or if they’ve self-diagnosed. I’m willing to accept either, especially given the international nature of Reddit and social media and forums dedicated to anything you can imagine, but there is a difference between someone who’s gone through the diagnostic process and someone who just feels autistic or somehow mentally and emotionally aligning with an autism diagnosis.
(For additional reading on how one university approaches the legitimacy of self-diagnosed autism.)
For me, the main impetus for me to seek a diagnosis was a meltdown I had at a wedding reception amongst people who would be (and are) considered important and influential. Though the presence of politicians, military leaders, business leaders, and others wasn’t what embarrassed Erin or caused my meltdown. The meltdown was caused by too little sleep and too much stimulus in the form of lights, music, noise in the form of people talking over each other, the number of people in a small space, and lack of information about things.
My meltdown embarrassed Erin because it was in front of her friends. What had started out as a fun weekend, a time we could get away from our (at that time) miserable lives and just be alone together.
Because I could see that this kind of behavior could lead to my marriage and family falling apart, I immediately started, for yet another time in my life, searching for answers to what I could see as differences between me and most people. My differences included experiencing things differently from others, not understanding interpersonal relationships despite spending years studying the topic, and always being tired. There were more, but in the context of this article, these should be sufficient.
The path from a wedding to my diagnosis took a couple of years and didn’t begin with me thinking autism or Asperger’s. In fact, and as I’ve written in another post, I couldn’t see in myself a special interest or specific fixation on specific things. The criteria were clearly written for children, and I was seeking a diagnosis as an adult.
The impetus for me was to protect my family. I knew if I could figure out what was different about me then I could begin fixing those problems.
Having some kind of emotional or intellectual alignment with autism was not enough for me. I needed to know. Needing to know meant one of two options. First, if I wasn’t autistic then we could dig deeper and figure out what was mirroring autism. Second, if I was autistic then the things I needed to figure out were more adaptive to my life and living and not prescriptive toward therapy or pharmacology.
Once diagnosed, what I initially realized was just how much that confirmation of autism would affect me emotionally. I was already depressed and being treated for depression, but knowing about autism shook me hard. I didn’t have any idea what my next steps could be or should be.
To pile onto this, I was soon laid off from the job I had and had to start scraping together work and money from part-time jobs, freelance work, and adjunct teaching. None of which contributed a lot toward our family finances.
The biggest post-autism diagnosis fallout was me hitting a wall with my writing, with a website about different fandoms, and an almost complete stop to me moving forward in many areas of my life. I hit a pretty deep and really long period of depression.
I had no idea that any diagnosis, let alone an autism diagnosis, could have that kind of effect. Which has led to figuring out some things that can be asked and some things that should be proactively worked on.
First, there is very little in the way of resources for adults diagnosed with autism. Unlike children, who have all kinds of supports and training, occupational therapists, people who are paid to come into the home to help out, and people at school who specialize in helping children with learning disorders succeed, adults receive a diagnosis, are asked if there are any questions, and then sent on their way.
Second, autism and ADHD have a high comorbidity rate. Which means for the vast majority of people diagnosed with autism, regardless of age, they also have ADHD.
Third, there are other comorbid conditions that also exist and once identified start to make sense. Depression and anxiety are two of the many. Asking about the additional conditions that are common as comorbidities and should be considered when an autism diagnosis is given.
Fourth, are the different autism groups and non-profits that exist. The one closest to me is AANE. They offer online and in-person meetups as well as support groups, training, adult supports, LifeMAP, and more. They previously went by the Autism and Asperger’s Network and are now branded as The Autism Association for Neurodiversity.
Finding people who are trained in and work with adults on the spectrum is an important part of the process. You don’t have to keep the people or groups, but finding people who experience some or even most of the things you regularly experience.
Fifth, find a therapist who is trained in working with adults with autism. AANE offers training for therapists to work with autistic adults or neurodiverse couples. This aspect of post-diagnosis is quite possibly the most important, though not the first.
There are clear differences between neurotypical people and their therapeutic needs and neurodiverse people (especially autism) and their needs. A common or typical approach to therapy isn’t going to work as well or at all for autism therapy. Unfortunately, recognizing this is a slow process and being willing to work with a therapist to help them understand specific personal needs is necessary.
Personally, I don’t maintain a therapist, though not out of a desire to go through them. My approach to therapy is often focused on specific needs or issues I want to work through and ends when I no longer have that need or I can begin to accurately predict what a therapist is going to do or their personal beliefs and feelings.
Finally, reading about autism in the forms of online posts, memoirs, books meant to inform parents or caregivers, as well as literature and studies will help in forming a better understanding of what it means to be autistic and how to approach the realizations of how you’re different.
What is important to remember isn’t that you’ve been diagnosed with autism. In reality, nothing has changed for you or about you except a new awareness about yourself. The most important thing to remember is that your job is to make your life better. To do this, you may need to have an understanding about yourself that you’ve never had before. Understanding autism and how it affects you is a big part of that.