Cynthia Kim, an Aspergers woman, writes about the first time she thought she might be Aspergian.
She had just watched a segment on NPR about David Finch, author of the Journal of Best Practices.
I Googled “Asperger’s tests” and came upon the Aspie Quiz. My score was way above the cutoff for Asperger’s. I took it again, answering more conservatively. Still above the cutoff.
I sat there at my desk for long minutes. Could it be possible that I’ve been autistic all my life and not known it? That’s a stunning realization–one that would require me to reframe everything I thought I knew about myself and everything I’d assumed I knew about autism. (I Think I Might Be Autistic)
When I spoke with my Aspergian colleague, Philip Wylie, a couple of weeks ago, he shared that getting an Aspergers diagnosis was akin to experiencing a nuclear bomb detonating in his life: it was a somewhat traumatic experience!
Since everyone’s different, discovering you’re autistic can set set off a whole range of feelings, from joy and relief to grief and despair.
Everyone (parents, spouses, professionals, and autistic men and women) needs to have a balanced perspective on what it’s like to receive an autism diagnosis as an adult.
Because a balanced view of learning about autism will help you better cope with the myriad of emotions following the diagnosis.
In this article, I’m some ideas to help you or your loved ones best cope with the stress, both positive and negative, of being diagnosed later in life with autism.
Learn About the Pros and Cons of Getting An Aspergers/Autism Diagnosis (via Philip Wylie)
Philip Wylie, who I interviewed for the podcast episode called a Very Late Adult Aspergers Diagnosis, graciously allowed me to share his notes about the pros and cons of getting an Aspergers diagnosis later in life.
Pros Of Getting An Aspergers Autism Diagnosis
- It helped strip away his illusions of society: this is not a kind world, in his experience. Here’s what Philip had to say on this point: “I simply didn’t know that most people either hate or look down on autistic people. And now in UK the government is blaming disabled / benefits claimants for the country’s problems.”
- It gave him information to protect himself from bullies and abusers. Again, per Philip, “It is a fact that autistic people are targetted by bullies and abusers, so when I was diagnosed I was a ‘sitting duck’ and manipulated by many people. Self-identification enables us to be more cautious and not give people the benefit of doubt until they have proved themselves to be proper friend.”
- Now he feels that he has a template of strengths (click here and here) and weaknesses to guide him.[Suggested reading about AS strengths and weaknesses – 7 Positive Traits of Aspergers Syndrome, 50 Positive Aspergers Characteristics, and What Is Aspergers? ]
- Understanding Aspergers helped him get a rational explanation for many of his past problems.
- He discovered that many of his key influencers and heroes likely had/have Aspergers
- In Philip’s words, “Everyone needs to know the truth about themselves, and this includes the truth of our neurology and our genetic pathway.”
Cons of Getting An Aspergers Autism Diagnosis
- Finding out too late is potentially a recipe for suicide – unless there is a good post diagnosis support system available.
- It’s very scary discovering how prejudiced society is toward autistic people (before his diagnosis, he was unaware of this type of bigotry) – so counseling and mentoring are usually necessary
- Identifying oneself as being disabled can cause a mental breakdown (identity alignment) which can be very traumatic. This increases the need for sound post-diagnostic support.
- There is hardly any empathy towards autistic people from society because we are different and our value to society is not accepted yet.
- The diagnosis is based on the medical model of autism which is deficit-based and does not differentiate between autism and mental illness, which is caused by adverse environmental factors (including bullying and other forms of prejudice)
- The cost of diagnosis
- Risk – the diagnosis is often based on subjective evaluation of behavior.
Seek Out Post-Diagnostic Support
Support can take many forms.
Here are my thoughts on some sources of support:
Find a therapist specializing in autism.
Read about the experience of other autistic bloggers.
I’ve included a partial list of these bloggers:
As you read their blogs, notice other autistic bloggers they may mention. Reach out to bloggers by following their social media pages or commenting on the blogs.
You’ll get a lot of understanding, empathy, and support from them.
Consider looking up either an online or local Aspergers or autism support group.
Talking with and getting to know other autistics will help you process your new knowledge.
Learn about the stages of grief.
Understanding these stages may help you to grieve the loss of who you thought you were, and to embrace the possibilities of who you are.
You may go through denial, anger, bargaining, depression, and acceptance, and not in a linear fashion. Pay attention to your thoughts and feelings after your diagnosis, and write about them or share them with a professional, or online, or with a friend.
Align yourself with an organization that will help you have a voice.
For example, here in the United States, ASAN (Autistic Self Advocacy Network) represents autistics. Its motto is, “Nothing about us without us.” Check out their resource library for more materials.
Acceptance of Self: The Best Part of Learning You’re Autistic
Here’s what Cynthia Kim wrote, about moving forward after her Aspergers diagnosis:
Then there are days when being autistic recedes into the background, not because I’m less autistic, but because I’m more comfortably autistic. Little by little, I feel myself healing old wounds, integrating the shiny new realizations, and becoming more myself.
That’s the best change of all.
Photo credit: Luke Pamer on Unsplash