Approximately 6 years from my first suspicions about a possible diagnosis of autism, and 3 years from actual professional diagnosis, I am taking inventory.
How life has changed! It is difficult to be specific, since changes have taken place gradually as I learn more about myself, the nature of the neurology I have been given and how it has affected everything in my life from my birth onward.
Diagnosis first of all , self understanding of my autism, was a series of “aha” moments, small discoveries that added up to the conclusion that I was/ am indeed autistic began with those descriptions of autistic thought patterns, physical and emotional struggles with misunderstandings, misperceptions, and poor performance. One by one, the light went on. “I do that” “so that’s why” “Oh, that makes so much sense” as the series of autistic diagnostic criteria and discussions with others revealed details about the ways we experience our autism .
At first it was very difficult to understand that each of us experiences our autism quite differently, and that we experience certain aspects of “performance deficit” “problem behavior”
“processing problems” “brilliant and highly above average performance” in varying aspects of our lives. It was hard to figure out what I had in common with so many autistic folks on the websites with autism descriptions, on the blogs I read, on the discussion groups where people talked about autism in so many ways.
One thing that helped a lot was to try to remember all the problems I had in childhood. Misunderstandings, Hurts, discipline for being “bad” even though I never believed I was doing deliberately all the things I was blamed for, Problems at school, being bullied, all went under my mental metaphorical microscope to be examined closely. I came up with loads of struggles and hurts from the past.
This exploded to upsets of my young adulthood and right through my present day more recent problems. It seems certain experiences followed me right through my life, being uncoordinated, being bullied, making people angry without a clue as to why, diligent research and activities directed at specific life long interests (horses, humane issues surrounding domestic animals) super high word skills both in reading and writing, very very poor performance in other areas of life skills.
It started to add up when I was able to compare what other autistic folks described and explained as their autistic experiences. The diagnostic triad, social struggles, communication struggles, and rigid patterns of behavior and thinking added up to my own brand of autism once I was enlightened enough from painful search of my past to see it.
Suddenly I could see how autism was behind so many of the painful experiences of the past. Everything was not, after all, “all my fault” as I had believed in my soul… I had been told and punished for misbehavior, deliberately being bad, causing trouble, having disappointing school interactions and grades, being in general a nuisance and a problem which must be punished repeatedly and still failed to perform or conform. I was a huge disappointment, a behavior problem, a bad person! No longer!!! What a relief to finally understand how autism had its works in the past and nobody knew!
I have less emotional pain, since I learned how to sort old painful experiences that replayed constantly in my mind, causing anxiety and emotional upset over and over. I learned how to file such memories under “finished business” in my mind after sorting them from the new perspective of how autism had worked without anybody knowing or understanding. If there was nothing to be done about the specific painful memory today, it went into that metaphorical mental file. Every time that painful memory came back up after that, I simply stopped it as best I could and said to myself “that is finished business” and sent the memory back to the file. There is a detailed description of this process elsewhere in these blog pages.
I have been able to see how autism worked, file old memories that caused repeated pain (so many of them it actually impaired my life) and best of all I have been able to forgive myself and others for all those events because of course, nobody knew!!! Such a relief!
Knowing my diagnosis finally gave me the perspective/platform to see all those old events and the beliefs and emotions surrounding them in a new way. So healing!
Learning about my autism neurology, and finding my worst struggles, gave me the opportunity to think about how I could do the things that were hardest for me in new ways. I could adjust my activities, my surroundings, my ways of doing things to make things go more smoothly and be less distressing every day. I recommend that we tackle the very hardest and most painful things from every day life first, and as we realize we are stressed and distressed, continue to make adjustments in the way we do things for daily living, for special events in our lives, special projects or holidays, vacations, how we handle anything that is physically or emotionally distressing for us.
Having made many adjustments to my schedule, my activities, my social interactions, etc, I am feeling far less stress and anxiety, and finding more peace and ability to give myself comfort and adjust even small details to make life continually more “doable”. I don’t spend all my time worrying about “what if”. I am learning I can handle almost any situation I choose to put myself into and that my life will go on usually with no permanent damage if I make a mistake. ( that was a huge one! )
We can make so many choices over the way we want to “do life”. First we need to understand we do have that power within us, that we can figure out better ways to do almost anything. We can ask for help if we feel we can not do this part alone.
Others in your life may resist change or cause difficulties for adjustments we may want to make. Things can generally be negotiated and compromised and support can be gained, but it is unfair to make demands on others that everything in their lives must change completely as well.
Find yourself a good support group of older autistic adults, there are many many of them “out there”.
Ask for insights and suggestions about how others have solved problems surrounding their autism.
Ask first, if you need to, for explanations about whether the struggle you are facing is somehow common to other autistic individuals.
Forums are such a great source of so many years actual lived autistic experience and it is great to find out you are not alone, that there are others who actually understand!
I will not name support group forums because there are hundreds and the ones I like may not be helpful for you at all.
There are all sorts of autism support groups from age related, gender related, politics and social justice related, medical basis groups, and more.
I had to try maybe 15 or 20 of them before I found one I consider my autism home on the internet.
Make sure the group you join for support is just that, a social and emotional support group. There are information groups, study groups, news groups and of course thousands of blogs and social media pages. See which sort of group it is in the group’s rules and descriptions for best results!
There are chat groups, in person support groups, and so much more. You don’t have to do this alone, there are so many resources and options available. don’t give up, you will find something just right for you out there.
If you are just getting started, I wish you well on your journey of self discovery. Even after 6 years from my first self understanding of my being autistic, I am still having insights and learning new and better ways to do things. Even at this old age of 71, things keep getting better, less painful and upsetting and healing. I’ll be sorting the first 65 years for the rest of my life, but it has been so helpful to know. Diagnosis can be life changing. May all good things come your way in the impending new year.