Learning about Autism

Where do I start?


What if you have just started thinking you might be autistic? How do you go about finding out?

Lots of us muse and speculate, remember, sort and mull ideas, emotions and information we already know, or think we know before we decide to take a closer look to gain deeper understanding. Some of us never get beyond the “what if” stage. That is OK.

For those of us who want to know more there are thousands of pages of information and thousands of hours of podcasts and videos or other visual media available. There are at least a few hundred books, articles, blogs and pages about adult autism available today.

I just jumped in and began looking for information from all of them. Since I am most comfortable with books, I started there, looking for “training wheels” sort of “beginner” books with simple basic information about autism.

I soon learned autism is a heavily divided and contested topic, with many very strong opinions “out there” trying to shout each other down and to claim their way to address autism is the best or only way and to attempt to erase other ideas or positions, opinions or outlooks.

Each of us must form our own opinions about the politics surrounding autism.

I looked first for very basic information. I quickly learned about false information and controversial “cures”.

Be skeptical when you start learning, question everything and see if claims hold up in the light of other’s input.
Look at all possible sides of claims and opinions expressed and use your own judgement.
I did not suspect all the surrounding political and unscientific hooey that I would find.
Being aware it is “out there” can help sort fact from fallacy. Don’t take anything at face value. Look for studies, documentation, references, links that agree and back up claims.

Start by gathering basic information about the nature of autism, how it works and expresses itself in individuals, watch for ways which you might have experienced some of the autistic struggles and differences described.

Most of what is written about autism is aimed at children and at parents. With this in mind, I found it very useful to look at my own childhood/growing up and to compare my experiences with descriptions made on articles addressing childhood autism.

You may find many of these before you find the 400 times as rare articles on older adults and autism.

There simply has not been interest in older adults having autism until very recently. There are a few on line forums for autistic adults. There are articles addressing “late diagnosis” of autism. These articles are generally by 15 to 30 year old individuals! The information and insights in them may be helpful to you none the less.

The pages here are intended to help those older adults new to the idea of autism find basic information all in one place. There are online forums like this and also several other blog pages which have insights and information as well.

If you prefer to view information or listen to it, there are podcasts and videos available too.

Once you have basic information you will have loads of questions. Getting more input will usually answer most of these, but I found that joining a group page where I could ask specific questions about autism helped me tremendously.

I got a lot of “whys” answered by others who shared their experience and insights of being older autistic adults and having been diagnosed or self identified for much longer than I was.

Getting input and building an information base and a foundation for understanding was the first step. I think it is good to continue to seek out new information and more insights as you grow in self understanding and begin to sort your past with new perspective. If you are like me, you will be so interested as you go through the process, that you will keep seeking more understanding. So many “whys” of the past answered, finding “how to” is so helpful!

I am about 6 years in from my first “I wonder” thoughts through diagnosis 3 years ago. I am still having “aha” moments as I learn more about autism and remember things from my past experiences.

Things keep getting better. I’m here cheering you on as you begin your journey, knowing the information you obtain now will be useful for the rest of your life. You are definitely not alone!

Autism Late Diagnosis

Adjusting to late diagnosis of Autism

Maybe I could be autistic? I might be autistic, I think I am autistic, I am autistic.

In all stages of exploring our diagnosis, things will never look the same. When we first suspect our autism all the way to professional confirmation, that yes we are autistic, we are growing, changing and adjusting.
Don’t be alarmed if you feel confused, lost, sad, angry, upset, relieved, curious, depressed, happy or anxious. Having lived your life knowing you are “different”, trying to understand how you seem to fail where others thrive, believing we are failures or worse because we have been told this as truth for our lifetimes up until now, finding out about autism turns our perspective on everything upside down.

We must sort every experience, every memory of bad times, confusion, sadness, anger in light of our new understanding.

We must figure out our mistaken beliefs and the way we see the world because knowing we are autistic really does change everything.
No longer are we to blame for our worst struggles, nobody knew about autism, nobody saw it working behind the scenes in our growing up, our young adulthood, our mature years and for some of us into our older retirement age years.

Suddenly we can see how so many interactions and frustrations, sorrows and anger are due to our autism and the way we process information.
Our neurology sets us at risk for poor social interaction, for misunderstanding, causes stress and distress.
Now we can forgive ourselves, nobody knew! We can begin to understand our neurology, what our true strengths and our worst weaknesses are and begin to find new ways to live that accommodates our struggles.

We no longer have to feel guilty because we can’t succeed at so many things others have expected of us.

We can have feelings of triumph when we figure out new ways to succeed when we allow ourselves to do things differently.

We begin to find our true selves when we let go of self hate and the continual struggle to do things simply because somebody else expects us to.
This is like entering a new and foreign territory. There are no maps, no guidelines, no explainations about “how to” go about sorting our autism as part of our newly understood identity.

We must find our way by doing lots of self examination, recalling the past, digging at old wounds and bringing them forward in our minds to see how autism worked in those experiences.
There is a lot of “emotional homework” sorting out past experiences and figuring out what “really happened” and understanding how our autism and our own behavior and responses to upsets and hurts had its way in the mix.

The older we are and the more self protective behavior, ways to cope, and attitudes we have developed, the longer it will take to unravel our experiences, have insights, see alternatives, and develop new and better ways of living.

Please understand that this takes time, might take the rest of our lifetimes to really thoroughly understand it all.

Please be patient and kind with yourself and others as you sort it all out. Expect to be upset, angry, anxious, feel relieved and joyous, depressed, sad, or any other emotions, in cycles for a long time to come.

Truly, diagnosis changes almost everything we thought we understood, knew, believed about our selves and our own lives, our experiences and our interactions with others.

Diagnosis opens doors to relationships, helps us forgive ourselves and also others. Nobody knew! It puts everything in a newly understood place and can change absolutely everything about ourselves. We might feel disoriented and question if all this new information, these new feelings, this new idea can be right.

New diagnosis is exciting, discouraging, fascinating, depressing, interesting, frustrating, and will likely bring about healthy and also scary new changes.

Do self care and have compassion for yourself right now. It is a lot to sort and process, it is a lot to accept. It is OK to have loads of feelings of all sorts, and mixed feelings too. guilt, anger, sadness, joy, excitement, relief, and so on are to be expected. Make sure you allow yourself enough time and self compassion, rest, do self care, take breaks from learning about autism if it gets overwhelming. There is no rush, we waited this long for diagnosis, we can take our time sorting out those details we need to understand to get on with our new lives from this new perspective.

Over time things will begin to change and we become more comfortable with our diagnosis.

I suspected my own autism about 5 years ago, decided for sure I was probably autistic 3 years ago, and got professional diagnosis 2 years ago. (today is December 21,2021)

I am still learning about myself, my past, and having those wonderful “aha” moments when yet another unsuspected insight into my autism and my life experiences suddenly makes sense and falls into place.