Now what?

The word is out! More “fully mature” adults (over 50 years of age) are learning about autism and asking themselves related questions.
Am I autistic?

Statistics show there are more autism diagnoses being made in adults of all ages.

We will spend a lot of time looking for qualified diagnosing professionals , struggling to find those with actual experience working with adults autistic individuals and who are willing to accept our insurance, set up a payment plan, give us an appointment some time in the future (up to 3 years waiting time sometimes in autism clinics especially for older adults).

We will spend a lot of money driving to appointments, staying in motels or camping near by, we will be stressed and distressed and struggle to find the right professionals in places we can reach and struggle through strange places to sleep and eat, new places to navigate, new heights of anxiety and distress .

If we make it as far as getting that precious appointment, we may find we are saddled with “other diagnoses” that explain our behavior and struggles because the diagnosing individual is not actually familiar with autism and the many ways it can show itself in mature adults who have coped and adapted on their own for so many years. We may give up in despair but still believe in our hearts that we are likely autism. Self identification of autism is accepted by many autistic groups for adults because we have experienced first hand how difficult it is to find competent professional diagnosis .


So after what is likely years of focus, struggle, many phone calls, emails, in person visits,referrals, failed leads, so many inquiries, searching for diagnosis, we finally find a rare medical professional who recognizes our autism and we have a name for our struggles and distress in all the years of our lives that came before.
Autism!

We know now that we are autistic. Autism has worked behind the scenes all our lives and most of us, although we were painfully aware of being “different” but had no idea why.

Autism answers so many “whys” of the past.

It explains physical struggles with balance and coordination, it explains our difficult social interactions with others. We can understand why we find so many experiences overwhelming. We can understand how our neurology fails us in things such as sensory input.

What we see, what we smell, what we hear, what we taste, how we move, how we process our emotions may all be influenced by the neurology we have been given, present from birth, and nobody knew.
Suddenly we can begin to understand how autism had its way with us all these years. We understand why we do many of the things we have done all this time to comfort ourselves, trying to find ways to cope with stress caused by events of every day living when we have many struggles that are not visible or understandable to others (let alone to ourselves, having been shamed, scolded, blamed and punished all this time for ways we have failed to live up to the expectations of others. Nobody knew!

Now we do know about our autism, we can begin to discover all the working of autism in our every day lives. We will experience a huge range of “roller coaster” emotions from anger and sadness, grief for our lost earlier lives and the pain of our childhood and early years, right through relief, a sense of release and anticipation, confusion, bewilderment, overwhelm; we are likely to experience it all.

Here’s where I am seeing so many posts and blogs and questions. We have established lives , we have coped and made adjustments, we have worked so hard for so long. How do we proceed from here? How do I do self care, self accommodations, how do I go on, now I know about my once hidden autism. What can I do for myself to make my life with autism easier, less distressing, less overwhelming?

First thing, understand that it took you all your life to get to this point. There are no miracle “autism treatments”, no “autism drugs” , no “autism therapy” waiting for us.

There will be lots of information to sort through, lots of people wanting your money to give you special diets, special schedules, special “therapies”, special supplements and making outrageous claims for their special programs.
It is easy to get lured down a path which promises miracles. Please keep an open mind, but do your homework. Research scientific reports carefully to see if results of any program have been proven and posted in reputable peer reviewed journals and repositories of such records.


Here is the truth. We can not change our autism, but we can change the way we face and cope with so many of the struggles we are presented with each day.

Learn about your own neurology. Read and understand what autism IS and IS NOT. Figure out what your best strengths and worst weaknesses are. This is where a report from your diagnosing professional can help. Usually there are tests given and results shown as part of the diagnosis and summary of the evaluation examinations.

In autism it is typical for us to have a few very strong features, even ranging into the level of being gifted in some way. It is also typical for us to have very difficult challenges in the way we are neurologically set up to “do life”.
Using my own diagnosis as an example, I learned I was gifted with words, comprehension and usage, but I had only 25th percentile visual processing and 35th percentile auditory processing.
Thinking back I realized why I have always used reading to get information, because what I see and hear in “real life” interactions is predominantly useless to me.
I may see well due to corrected vision ( I wear glasses) and my hearing tests at very high and low ranges, I can hear more than the average individual.
BUT what I see and hear is predominantly useless to me because it is never processed, never registers in my mind at all. What goes in does not stick or register in any meaningful way, only snatches of understanding are available to me in any “real time” interaction.

All my life I was told I was not paying attention, I was not trying, I was not applying myself, that I was lazy, thoughtless, and many other labels were given to me to explain my failures all those years.

Your neurology may be completely different, with different strengths, different struggles with sensory input of one kind or another.
Look for the best and worst performances in your test results. It will give you clues. If you don’t have test results, for weaknesses, think about the things that have been hardest for you in every day life, all your life. Find strengths by thinking of the things that give you enjoyment, pleasure, or a feeling of being competent.

Now I understand what was really going on, that I have actual neurological difficulties that make many common daily activities very hard for me to perform, I can find ways to substitute activities, support my weaknesses, adapt my life to new ways of doing things that will not put such pointless demands on my neurology.

This comes at a price that might make things very difficult for you and those around you.

Things have not been working so well for a long time, trying to make those things better will shake up our routines.
Those who live with us, work with us, and interact with us daily may find those changes less convenient, may resent that we no longer choose to force ourselves to do activities that cause us misery.
Others may not understand when we begin to make personal decisions about our lives to make things easier, less distressing, more comfortable from health, emotion and mental well being standpoints as well.
When I began to look for self accommodations I realized there is a huge lack of information about all the ways we can deliberately change our lives to make things more comfortable and easier every day.
There are so many changes we can make !
We can start by finding the worst struggles, eliminating or coping with triggers in new ways, figuring out “work arounds” to make our worst problems of every day living easier to cope with.

We can change not only physical surroundings, but also our routines, our jobs, our living circumstances, our clothing, our attitudes and outlooks. Its a lot to sort!

What is hardest for you, every single day?
Does it have to do with demands from others?
Does it have to do with sensory input that affects you in unusual ways?
Does it have to do with your own attitude, expecting yourself to perform as society says you “should” and giving yourself anxiety, depression, overwhelm , meltdowns, and conflict within your home, at work, in other areas of social interactions?


Have we developed bad habits to cope with our struggles, with alcohol, addictive behaviors, street drugs, maybe neglecting our health and not exercising, bathing, or maybe we over eat?

There are all sorts of things we can change. It might take courage to find new ways, to face family members and draw the line, refusing to participate in activities they may expect of you, but that cause you distress and misery. There are many substitute activities to suggest and to try “instead”.

Take the time to think about all the ways you struggle every day.
As individual struggles, what can you change to make things work better, go smoother, be easier on your senses, be less distressing or overwhelming?

Relief does not come overnight! Expect to have to work at sorting your own autism and maybe expect to try several things before you figure out what is right for you.
Over time with many small adjustments and maybe some large lifestyle changes, you will likely find the path is smoother, the struggle is less, the rewards greater.
Don’t be afraid to sort it out and try a few changes !
Your health, well being, and daily improvement to your quality of life will be observed over time.
Things will get better. You are worth it!!!