Helping loved ones understand your autism diagnosis

One of the more challenging things besides impostor syndrome is navigating the responses of those who love you and try to understand your autism diagnosis.

• First, they likely have a very different view of autism than you or I do.
• Second, they may find it necessary to process the not-so-nice ways that they may have treated you.

Understanding my autism

I have never seen autism through a prism of disadvantage. A beautiful memory is a joy I felt leaving the therapist’s office with an official diagnosis on a sunny afternoon in Toronto. Martin was the first person I called, and we talked excitedly about my diagnosis. Here now, I held in my hand the answer to the many unresolved questions.

I was uninformed about autism in adults. Despite seeing over 30 therapists and medical doctors throughout my life, autism was never even suggested, let alone diagnosed. With chronic PTSD from a significantly traumatic childhood, all of my autistic challenges, depression, suicidality, meltdowns, and anxiety were shoe-horned to fit that diagnosis.

Like so many other adults on the spectrum, I, too, lived a life of silent desperation. We feel alone, always deeply alone, yet paste on a smile, chat, laugh, socialize and find ourselves lonelier than ever.

The happiness and relief in receiving my autism diagnosis were tempered almost immediately by the feeling I was an imposter. Initially, my loved ones were of no help. To be fair, the diagnosis followed a breakdown. After leaving a dysfunctional seventeen-year marriage, I just kind of snapped. I was depressed and suicidal.

So my son’s introduction to my autism was frightening—his mom did not want to be around anymore. My ex, whom I am friends with now, broke down and wept about what he had done to an autistic—all those things he found annoying about me were explained, and his guilt ran deep. The worst was a dysfunctional friend who kept telling me it was trauma, and I would always be messed up. He was the person that drove me to tears repeatedly and a friend I soon dropped.

I worked with a therapist who did not understand autism, telling me that my traits were not related to my autism. Nonetheless, she was helpful in many other ways and has come to understand me and learn much about autism.

Over time as I got better, the people around me adapted and welcomed their better understanding.

My son, who is also on the spectrum, changed from “You can’t seriously be happy that you’re autistic” to “Mom, I have autistic traits as well.” My ex and I are good friends. He apologized, and we both understand each other so much better now.

It took me thriving and healing, and others involved needed their own time to heal.

It helped people understand my naivety and helped my kids and true friends know that they should look out for me.

I had to get past my own imposter syndrome for other people to come around. My confidence helped them understand.

How might family and friends better understand my autism?

As a form of advocacy, I tell everyone that I have autism in the interest of dislodging misconceptions about autism. But I am in a fortunate position—I have a successful career, a happy marriage, and close friends. The risks are minimal in losing anything of importance to me.

Task number one is to take care of yourself. Give yourself the time to process your diagnosis without the encumbrance of sorting out the responses of others. You are the same person you have always been but now have the opportunity to better understand yourself.

It is tempting to think I’m not the person I thought I was. A more accurate statement might be, I don’t interface with the world in the way I thought I did. Now is the time to re-evaluate.

Discover the person you really are. This will take time. You may have spent so much of your life trying to fit in that it often creates an identity crisis. Seeking therapy with an autistic therapist may be helpful for you.

Remember—you have no obligation to tell anyone. Consider carefully whom you choose—once told, people cannot be un-told. Some simply do not need to know, and perhaps more concerning, there are those it may be harmful for you to tell. 

Also, you cannot—I repeat cannot—control other people’s reactions.

Processing your autism

There are several things you can tell people to help them process your autism:

Education on autism

• Most of what the public understands is autism, focuses on children with high support needs, often seen through the eyes of their distressed parents. This is but a small part of the autism community.
• Many of us do not want to be cured and are happy as we are. It provides us with talents we appreciate.
• We have as much trouble understanding neurotypicals as they have trouble understanding us. This is called the double empathy problem. In fact, research shows that autistics and non-autistics are more different from one another than are people from different cultures.

Education regarding your challenges

• Explain the social and communication difficulties you have experienced almost daily. For example, practicing scripts, eye contact, or interrupting others during a conversation.
• Many of the challenges often attributed to autism are actually due to co-occurring alexithymia.

Education regarding your strengths

• Many great people are autistic. Anthony Hopkins, Charles Darwin, Tim Burton, Lewis Carroll, Steve Jobs, Emily Dickinson, Bobby Fischer…
• Research suggests that if a person is very intelligent or very creative, they should be screened for autism. There is in fact so much overlap that autism is considered to be a “disorder of high intelligence”. That is not a bad thing!

A suite of recent studies has reported positive genetic correlations between the occurrence of autism and measures of mental ability. These findings indicate that alleles for autism overlap broadly with alleles for high intelligence.

• We are lateral thinkers that come up with great solutions!
• Feel free to share our Powers & Kryptonites page to overview many of our advantages and challenges.

Overcome imposter syndrome

• The more you understand yourself, the easier it will be to explain to others who you are.

Time

• A lot of this all gets better with time. So grant yourself that time.

It helps to learn and understand autism yourself. Most of us have our own doubts and misconceptions about autism—especially late-diagnosed autism without intellectual disability. So do the people who care for you. It will take time for you and them to understand and accept this new identity.