Getting older with autism

Many of us born 40 years ago or more grew up on our own, without insight into what made is ‘different’ ‘odd’ a “weirdo” , nor did we have any idea that the struggles of our lives were different or greater than others around us. We grew up self critical, not understanding why things that seemed so easy for others were so very difficult for us. Why, why, why can’t I ‘get it’ , ‘do it’, ‘behave like others’, ‘make friends,’ ‘be good at a certain skill or schoolwork’, why can’t I sit still, why can’t I pay attention…. why? Now we know the answer could be autism.

Autism is neurological in origin, our nervous systems are different and we learn to use our bodies and brains differently because of those differences. This is ‘neurological processing’ differences. But autism is not defined by how we process things from a neurological basis, but it is defined by our behavior. This is why autism is lumped in with other neurological issues which show behavioral consequences.

When I began to learn about autism I recognized myself not as I am today, but in my childhood and early life. I could see that most behaviors and problems I had when I was young were symptoms/signs of my autism. Along the way, in my early 30’s, I got some good counseling for unhealthy behavior I had learned in my early life, and was able to put into practice, without ever suspecting I was autistic. Those healthy behaviors have stuck with me and I suspect without those and a very reliable and supportive spouse, my life would have ended in misery years ago. I suspect there are thousands of autistic people today in their senior years who have not been lucky enough to learn about their autism and are still struggling with false beliefs about their perceived failures, weaknesses, misdiagnosed mental illnesses, and more. I would like to try to reach others who suffered as I did in childhood and early life, and who may be suffering now with false ideas about their self worth, emotional strength, worthiness, even wondering about their sanity and ability to recover.

Nursing homes, hospitals, and other institutions generally have no idea about autism and there are so many things that could be done to help people cope within the restrictions of their surroundings, and help individuals toward better health and allow better care.

As we get older, studies suggest some symptoms of our autism may grow in severity. An autistic person who is easily confused in every day life may become so confused in a care setting that they are diagnosed with dementia or other disorders. An autistic person who is distressed by sudden touch may fight bitterly when attendants try to give basic care to the bedridden or wheelchair bound, for instance. Those autistic folks who are upset by noise and flashing lights will not enjoy daily “social time” in a large room filled with echoes, television blasting and fluorescent lights flickering, and as a result may be restive or combative. Echolalia may be mistaken for mocking or other deliberately insulting behavior.

There are probably a hundred more issues that could be helped to make things safer and more comfortable for residents and staff if properly addressed through understanding of autism. So much misunderstanding and misery could be avoided or alleviated by enlightened choices on the part of the autistic person and those who care for or about them in any setting.

Finding direction

When I began learning about autism, I simply felt a huge relief to finally understand so much of my past, how it happened and why. In looking at events from the past, mostly unsuccessful interactions with other people, which caused emotional and sometimes physical pain, fear, and frustration, I was able to see how autism prevented me from understanding them, and them from understanding me. That was incredibly overwhelming, changing my understanding of everything in my world, and shifting it to a new perspective. I am still taking “baby steps” in my understanding and am continually amazed at how deeply entwined autism features are in all of my life, every part!

I have decided that for those of us who are older,( lets just draw an arbitrary line at chronological age 60), it is much more difficult. Many, if not most of us, have had no idea about our autism and have lived our lives as social outcasts, believing that what was happening to us was somehow our fault. We were faulty because we didn’t ‘get it’ and couldn’t do things that seemed to come so easily to others. We have been the nerds, the weirdos, the socially unacceptable geeks, the “odd ducks” and often also the brilliant and quirky genius sitting at the back of the room and coming up with solutions to problems that escape others. We have often been mocked, bullied, ostracized, belittled, and we carry the pain of not knowing why with us. Depression is frequently experienced by autistic folk, is it any wonder why? Anxiety seems almost universal among autistic people. If I kept doing things wrong, and being punished or criticized, but never knowing how to fix what I am told is wrong, is it any wonder I am ( we are) anxious? I am going to record my thoughts, feelings, and struggles as I go forward from self discovery of my autism, to trying to find somebody who will recognize the true diagnosis of the old lady with autism.

It would not matter to me if I stayed with self diagnosis, because I am quite satisfied with understanding within myself, and finally knowing the answer to almost every one of those “why” questions I had for most of my life. Here is the thing, though. I wish with all my heart that others who are still struggling and hurting deeply because they do not have the secret word: autism…. could be helped. In society today, one’s credibility depends on documentation… you must be certified by others… to drive a car, to act in many professions ( physician, lawyer, weather forecaster, engineer, ok- you get it) . If I want to be my best as an advocate for autistic people who are undiscovered and hurting needlessly, I can’t go out in the public sphere and say “Listen to me, I think I might have autism, and I want to tell you about it.” can I? You can imagine the response, can’t you? But if I say, ” I am autistic, I have been diagnosed as autistic, and I might be able to tell you a few things about it” I have that credibility… the socially acknowledged experts have pronounced me autistic. I have a certificate! No rolled eyes, no sighs, snickers, and shaking heads, it is there, proven; I have that paper that gives me credibility. My search for credibility has begun. This is an ongoing story.