Life After Adult Autism Diagnosis
Perhaps you’ve spent years wondering why you’re different.
You researched, you read, you talked to other people, and then you finally obtained a formal autism diagnosis.
Depending on your personality, your support system, and your life circumstances, finding out that you’re Aspergian/autistic may affect you in many different ways.
Some Aspergians have felt elated, relieved to finally have something that explains who they are and how they function.
Others experience deep depression, anger, and resentment. They may feel angry at their parents, who denied that autism ever existed.
They may feel sad and upset about all the opportunities for learning and therapy that they missed out on as kids.
Fortunately, you’re not alone. Thousands of others adults have gone through adult autism diagnosis.
You can move forward in your life after adult autism diagnosis by following lessons learned from other autistic adults.
Recognize the Crisis
I Googled the term “crisis.”
Here is a definition I found most appropriate for this topic of moving forward in life after adult autism diagnosis.
A time when a difficult or important decision must be made.
Example: “A turning point in history.”
The Challenge of the Crisis
Here’s the challenge, per autistic author Dr. Stephen Shore.
In his chapter called “Considering All the Options,” (in the book, the Nine Degrees of Autism , Dr. Shore writes about the challenge of change and autism:
Change is one of those concepts that causes major difficulty for us. Mostly, this is because we have problems with forward thinking….Change brings about a certain amount of unpredictability requiring the processing of novel information from the environment in real time. If we have to anticipate outcomes from changing relationships, changing social situations, changes to our personal routines, established environments (emotional, work, family, and so on), these cause immense fear, confusion, and pain. This is mentally and physically exhausting.”
We are torn between wishing we didn’t know the truth so we could slip back into ignorance, a place where we didn’t have to be responsible for making appropriate choices, or of moving forward in our newly discovered identity. Retreating is as difficult as moving on. Once the light has gone on, there is no returning to the shadows.
Recognize The Opportunity
The discovery of autism brings crisis, but it also brings opportunity.
Cynthia Kim, autistic author of the blog, Musings of an Aspie, wrote the following in her blog post, Adult ASD: Moving Forward After a Diagnosis
The decision to pursue a diagnosis was difficult to make. There were times when I doubted my choice. Was it necessary to have a professional diagnosis? Would it make a difference?
Having gone through the process, the answer to both questions is yes. I have a strong need for closure. I don’t deal well with gray areas and uncertainty. That piece of paper that says, “299.80 Asperger’s Syndrome” closes off an avenue of doubt for me.
Dr. Stephen Shore says that “we now need to work to transform our new self-identity.”
Here are some opportunities Dr. Shore and others have identified:
- Opportunity to find more support
- Opportunity to learn more about your strengths and weaknesses
- Opportunity to get accommodations
Cynthia Kim wrote about the following specific opportunities to make changes and to accept vulnerabilities:
Slowly, I’ve been working at making specific changes. I’ve written about being more flexible, allowing myself to stim more, trying to reduce my insomnia and nightmares, learning to translate from aspie to NT and back, and exploring my emotions.
I’ve also written about the things I’ve decided need accepting rather than changing: my lack of empathy, my anxiety, my tactile defensiveness, my love of being alone. My litmus test for change vs. acceptance is simple: is the cost of changing this thing higher than the benefit I’ll gain from the change?
Give Yourself Permission To Grieve
Maybe you’re happy that you now understand yourself and your neurology a bit better.
For every person who’s happy, I’ve read about or talked to autistics who experience a wide variety of emotions about getting an autism diagnosis as an adult.
According to Dr. Debra Moore:
Initial reactions can include a cascade of painful feelings, frequently including sadness, grief, anger, and resentment. A pervasive sense of loss may haunt you. You may wonder how your life would have been different if you had realized your autism earlier. You may believe that you were deprived of opportunities and that your potential was lost along the way. You may fear that it can never be recovered. -Chapter, The Fourth Degree of Autism, in the book, the Nine Degrees of Autism.
Be compassionate to yourself as you go through these emotions.
In the words of Dr. Stephen Shore,
It takes a lot of time and energy to grow into the wonderful individual you were meant to be. It’s a process of death in order for there to be life. As an example I am reminded of Winter. At times when I’m cold in the Winter and feel the “grayness of a particularly drab day, I remind myself that without Winter there would be no Spring.
Read, Write, Talk, Join
For some of you, reading about your diagnosis will be helpful.
Read the stories of others who have gone through this process.
Cynthia Kim, from Musings of An Aspie blog, has written a great series of posts about adult autism diagnosis.
She’s written a great book about adjusting to life post adult autism diagnosis, called Nerdy, Shy, and Socially Inappropriate: A User Guide to An Asperger Life
Many Aspergians and autistics have recommended Dr. Tony Attwood’s book, The Complete Guide to Asperger Syndrome.
I spoke with one podcast listener recently who told me that writing about his feelings after getting his diagnosis was very helpful.
He uses a practice that I and thousands of others have found helpful: Writing out his thoughts and feelings in The Artist’s Way Morning Pages Journal. I own this journal myself and use it to this day.
He told that he mostly wrote about anger for the first couple of weeks. After the anger cleared, he was able to get his core creative thoughts and ideas.
In the words of author Julia Cameron:
Once we get those muddy, maddening, confusing thoughts [nebulous worries, jitters, and preoccupations] on the page, we face our day with clearer eyes.
Read more about Tim Ferriss’ morning pages practice here –
Some of the most deep and profound writings I’ve found about autism come from autistic bloggers and writers. Often they started their blogs as a way to “work through” their thoughts and feelings post-diagnosis. Maybe you could do the same!
Whether you write a blog or adopt morning pages, consider writing out your thoughts and feelings.
Consider psychotherapy as a way to talk about the many thoughts and feelings you’re having.
Make sure that the therapist you work with understands Aspergers and autism.
Invisible Strings blogger M. Kelter writes about how helpful the right therapist was for him in his blog post about Depression and Therapy.
Here’s an older post (from 2011) that I wrote about things to look for in a therapist.
Here’s a list of online autism/Aspeger communities to support you as you undertake your post-diagnosis journey –
International Aspergirl Society
If you’re an Aspergian/autistic woman, join Rudy Simone’s community. Learn more about it by listening to my podcast episode called, Aspergers Women Empowered: You Need To Hear This! With Rudy Simone
Aspieology as an online dating resource for Aspergians. However, in my interview with the site’s founder, (himself an Aspergian), he stated that just as many people sign up at the site for friendship as much as dating.
Listen to my interview with Reg in this episode, Aspieology: Dating Online, Or Not!, to figure out if you may want to connect with others in this support community.
Reddit and Wrong Planet
Feel free to join anonymously if you’re shy about putting yourself out there.
Realize that there are people with strong opinions in any community.
But there are just as many who will be helpful.
The Thrive with Aspergers/Autism Closed/Secret Facebook Group
Go to my contact page, fill out your details, and let me know you’d like to join. We’d love to support you in our community.
Other Helpful Links, Quotes and Resources:
Learning How To Be Autistic After A Late Diagnosis – a helpful discussion thread from Wrong Planet.
When did you first get your diagnosis and how did it affect your life to actually have a diagnosis?
How To Understand People Better (recommendation from an Aspergian Reddit user)
Accommodation Ideas for Autism Spectrum (from the Job Accommodations Network)
Life Skills For Staying Strong In Times of Adversity (an article I wrote for Advanced Life Skills Blog on the topic of resilience)
Living Well On The Autism Spectrum
In conclusion, remember that you’re not alone with your adult autism diagnosis.
Thousands have gone this way before. Live life with honesty, courage, and resilience.
Recognize the crisis and opportunity that new knowledge brings.
Read and learn about autism and Aspergers.
Write about your thoughts and feelings.
Go to counseling to talk all this through in a safe place.
And consider joining some online forums or groups for autistics/Aspergians.
Congratulations on the next step in your journey of self discovery.
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