Thinking about what I have learned. Random thoughts and insights .
It has been about 7 years now since I began to suspect my autism diagnosis; the blog here just celebrated its 5th birthday, and I got a professional autism diagnosis two days before I turned 68 years old, that would be 4 years ago.
I have had time to sort my autism, understand autism’s history and my own personal history.
I have been able to finally understand how autism worked in me and my family situation and my young adulthood right through middle age and retirement. Yes, that is right, I never knew about my autism until after I was retired.
All that happened , I had spent most of my life in struggles related to my autism before I understood I am autistic, and have been from the moment of my birth. Nobody knew!
It has taken me a long time to recognize and realize how difficult things are for me, compared to those all around me. I am truly impaired, truly disabled as a part of my autism. I had no idea!
Things others do with ease requires a great deal of effort for me to perform, and in a lot of cases, my neurology is simply not up to the job.
It has been humbling, humiliating, fills me with dismay when I remember all the social struggles with others and see how I “didn’t get it” in almost all cases.
I understand now, how I caused others pain, anger, and annoyance all of my life without ever knowing; feeling helpless, hopeless, abused and rejected but never understanding all the “whys” behind it. Nobody knew!
All my life I was told I was not trying hard enough, not doing enough, being a jerk, being deliberately malicious, cruel, thoughtless, I could do better, I should snap out of it, shape up, get with the program, change my ways. I was the problem in all cases and I should stop it right now!!!!
I had no idea how to do this, nor did I understand what they meant by those things, except that it was all my fault, and I was doing it deliberately, They thought I was evil and wrong, a bad person, and was told repeatedly I knew exactly what I was doing and I should stop it!
I still remember (and always will ) weeping with sorrow and helplessness through these times of blaming, punishment and shaming, and my wailing “but I don’t know how”
Every time these things happened being told “you know perfectly well what you are doing”.
Truly, I didn’t.
After a long life filled with misunderstanding, helplessness, hopelessness, emotional pain and damage, depression, suicidality and despair, I finally learned in my autism diagnostic process that I had sensory processing disorder- that I only understood 25 percent of what I saw in “real time” and only understood 35 percent of what I heard.
After having had my vision corrected in early childhood (around age 7 or 8) and having been tested as having an exceptional range of hearing from very high to very low registers, I was told I had no excuse for my multiple failures in every situation in my life, from social struggles, communication and understanding others or myself, following instructions, never being able to complete or learn any task without asking for loads of explanations and asking a hundred “whys”. Shaming, blaming and punishment were almost daily things for much of my life.
I found out there was a true neurological reason for my multiple failures.!!
That was stunning, and took a lot of time to sort.
I did not at first understand what these inabilities to process almost anything in ‘real time’ meant regarding what I was capable of, what I was asking of myself , what others expected of me.
My inability to perform as expected in almost every case was tied deeply to my autism and my neurological failings, not my personal ones! Nobody knew!
Maladjustment in coping with my struggles where nobody, including me, understood my neurological shortcomings, meant emotional suffering for me and most people who associated with me on almost any level. Nobody knew! everybody, including me, misunderstood almost everything !!! Amazing!!!
Ah, how freeing it has been to understand that my sordid, painful past was not all due to my moral and personal failures, but that my neurology was simply not set up to live life the way I was expected to, or to perform as I was expected to.
It has been Such a huge relief to know and finally understand all those painful “whys” of the past.
I have been able to forgive myself and others over all of the past. Nobody knew. Nobody understood!
Healing is taking place as I understand and adapt.
I realized the other day that I deserve huge credit for being a survivor!
How did I go through all of those things, and still manage to find sanity and be able to heal from that past?
It is amazing to me that I did not end up dead in a gutter long ago. I have been lucky and blessed in so many ways.
How many people in my age group will go to the grave blaming themselves and others and feeling pain with no escape, never knowing the answer to so may of their struggles is that one word, ”autism”. ???? My heart goes out to every single one , we all deserve to know the truth about our life long struggles.
Give yourself huge credit for finding ways to make it this far in life, even with maladaptive behavior and all the problems living without knowing our diagnosis can bring to life.
You are a true survivor!!!!
There is hope for a better future. Knowing about my autism now has been a really powerful tool, something of monumental importance – a key that opened up the insights and perspective I had lacked to understand my world. I can not begin to describe the importance this has had for me personally, and my world!
I have learned that for us, our autism diagnosis is stimulus to explore our personal experiences and traits, and at this old age, its a lot to sort!
I think I am still having those wonderful “aha “ moments of insight and understanding, and that satisfying opportunity to say “so that’s why” about still another part of my past or even my present life.
I have learned that nobody else is as fascinated or interested in my autism discoveries and insights, except other autistic individuals.
Even people who have children or partners, or other family members with autism are not as interested in the autism itself as in finding ways to work around its worst struggles. (the ones that are the worst for them, even, maybe instead of the experiences of the autistic individual in their lives).
Blogs, articles, chats, autism support groups both in person, online and using all of the features of today’s best technologies are the perfect way to share information and support each other in a world where nobody else wonders much about autism and how it affects 2 to 3 percent of the world’s population. I am so grateful for the internet!
The reason I started the blog was to explain for others my experiences in searching for diagnosis as an old lady here in the USA, my insights and the things I have been learning along the way.
In the past 5 years, much has been learned by science, with the general consensus being that autism is mostly genetic and it is developmental. The ways we struggle with autism is due to uneven growth and development of our neurology. Each of us will be different because no two neurologies develop equally . Performance on sensory tests and neurological tests show uneven performance, with amazing highs sometimes to really low performances in other sections of testing. The so called “autistic behaviors” are the direct result of our uneven neurology.
I wanted to show everything I was learning here in the blog to help others who have just begun to suspect they might be autistic as older adults, who are seeking diagnosis, who are recently diagnosed and looking for ways to make their every day lives better with self accommodation and seeking self understanding.
Everything looks different when we discover our autism.
Wishing all a Happy New Year. May the new year be your best yet!