Autism after adult diagnosis

adjusting to our new understanding 5 things that might help!

Finding out we are autistic throws “everything” we thought we knew and understood about our selves, others, our past, our nature, our lives right up until we are finally diagnosed late in our lives, into new perspective.

Suddenly learning how autism has been working within us all these years without our knowing can be stunning, disconcerting, upsetting, exciting, a huge relief and also a huge disappointment causing grief for our past self, time we now see as lost, and shaking us to the core because of new self perceptions.

The longer we have gone without knowing our diagnosis, the more there is to sort!

Here are things I have figured out that helped me through the rough days following my self identification and 3 years later professional confirmation of my autism diagnosis.

Learn as much as you can about autism: This helps with self understanding , we can figure out exactly what our neurology is doing through autism, figure out our best strengths and help support our worst weaknesses, once we understand our own neurological “wiring”.

Books, blogs, online videos, articles from groups and organizations, reading studies “about” autism can help us see ourselves both as we are now and as we were in childhood, young adulthood, middle age, etc. Knowing more helps us understand all those “whys” of our lives, helps us see ways we can make our current lives better by making adjustments in the way we do things every day. Information is power we can use !

Find emotional and social support : There are many online autism support groups, they can be local or international, the culture and intent of each group will be different and you may have to try several over time to find a group that is right for you. There are groups for parents, groups for those with multiple diagnoses, groups for gender identities, groups for those with autistic parents, groups for those who do not speak, for those with interests in certain topics, etc.
Joining such a group provides support and assurance that we are not alone, that others have gone through similar struggles, had similar issues, needed certain specific explanations, and reassurance that if they have got through this, you can too!

These support groups are generally especially for problem solving and asking questions about personal struggles. They are generally private, closed groups, so you may have to sign in. sign up, agree to abide by the group rules and stay within the group guidelines. It might take several tries to find your on line home, but it is worth it!

Where else would we find insights and experience, and the combined years of wisdom got from living autistic lives to help us find solutions to our problems? If we live in a higher populated area there are also often local “in person” support groups , which again feature special focus on support, information, recreation, specific age groups or other limits and rules we will need to be aware of.

Seek counseling or therapy:: if we have emotional pain or struggles with anger, self injuring behavior, addictions, eating disorders, multiple diagnoses, destructive behaviors around food or other bad habits or if we have constant depression or anxiety. We can figure out where we can change things.

Living a life of distress and frustration, filled with misunderstandings and emotional hardships seems to be more likely than not for most adults who have made it to old age before discovering our autism.

We may have learned to cope with our struggles in many unhealthy ways. Therapy can teach us new ways to communicate, help point out things we might not have understood in our history or present lives and help us substitute healthier ways of living and “doing life”.

Due to our autistic rigidity, we may not be able to see we have choices and alternatives. We may have to try several therapists before we find one we can communicate with, but they do not have to have experience with autism, only the willingness to work with us to find solutions to our day to day struggles, our trauma, or other problems that need better solutions.

If what we are doing is not helping, we can learn to do something else instead.
There is almost always a “better way” and therapists are there to help us find those ways.

Give yourself time! It has taken all our lives to get here, it will probably take some time and lots of emotional “homework” to sort it all out with our new perspective, to figure out how to make our lives better, to find new ways to “do life” with our new understanding. Your best life starts now. Take good care of yourself, keep trying, consult others who have “been there- done that” , get advice, consider options, we will find that although our basic struggles have not changed, our ability to cope, our self understanding , our new insights to others and our own personal history will begin to grow and change as we move forward to our new lives as “actually autistic”.

Make a “safe place” or a haven, a nest, at home: . We need a place where we can refresh our minds and souls in safety and comfort. It can be a quiet corner anywhere, a special chair, a bedroom hideaway. a den, a place that is filled with things we can find comfort in.
We almost always need a refuge/retreat or a sheltered space where we can re charge our emotional and physical “batteries” after a hard day, an argument, a meltdown, any upset. The nature of autism makes this important for self regulation and self care. You can make mini-safe places while on the road, at the office or workplace, and find new ways to give yourself comfort and escape or rest when you need it. Try brainstorming with others in your household, group, or those online problem solving forums. The ideas that others have come up with can be so useful!

One thought on “Autism after adult diagnosis

  1. I’ve just entered my sixties and thirteen years ago I remarried. A year later I finally moved in with my husband who lived in a city an hour away. I’d been living alone for several years and it was a big adjustment, but the thing that helped most was turning a spare bedtime into ”my room.” I hadn’t had my own room growing up..I’d had my own space in my senior year of college and then my own room with a housemate for a while. Then I married, years passed, I divorced and was in my own apartment for several years. When I moved in with my new husband and lost my solitude, I was in a constant state of anxiety but with no real understanding of why that should be. I loved my husband and we got along well with a few blips here and there. I got my own space by accident, really. In the winter, my husband liked to keep the house at 66 degrees and this made me uncomfortably cold. I tried getting him to agree to 68 degrees but he complained about energy costs and said he was too hot at 68 degrees. One day I’d had enough of hat-wearing indoors and dragged my space heater into the spare bedroom and stayed. It didn’t take long to realize the reduction in anxiety I felt there— I was warm enough, alone enough and there was no music, no TV, nothing intrusive. While my husband was a bit hurt at first, when I explained how much my quality of life was improved and how we could make it work if he periodically “visited” my room and if there were periods of the day where we hung out together, say in the TV room, at dinner, etc., he got over his sense of exclusion and realized I was calmer and more content. So we got rid of the guest bed, which we weren’t using anyway, and I made the room into a personal retreat. I highly recommend trying this for married couples if one or both have autism—thanks Debra for bringing it up.

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