Tag: Autism changes

Adjusting to Autism diagnosis

In our later years.

Recent diagnosis at any age can be a relief, a shock, cause emotional pain and distress, relieve emotional pain and distress, all of the above, or none. For each of us, our perspective will likely be changed forever. Things we thought we understood may change, as we begin to sort our long histories and pasts and make sense of many of the “whys” of the long lives we have lived before we ever discovered our autism.

Along the way, many of us may have learned ways to cope, adapted behaviors to survive and to get along, and many of these may not have been healthy! We may come to our recent diagnosis feeling overwhelmed, incompetent to deal with life and new perspectives our diagnosis might give us. That’s OK, and you can pretty much expect some form of all that!

The good news is that we can learn new ways to communicate and our diagnosis can give us tools and insights that might not have been evident before. We can figure out our worst struggles and find ways to “do life” in easier and less distressing ways, now we know about our autism.

I learned to communicate in healthy self assertive ways.
I learned to see when I was being “guilted” , “intimidated”, “manipulated” and how to set boundaries and protect myself against those behaviors from others.
Along with those skills, I also had to be taught to recognize “what is my job, and what is not”.

Let me explain. All my life I had been trained to please others. Frequently somebody would say “you made me cry” “You hurt my feelings” “you make me so angry”

See a pattern in those statements? The person involved is telling me it is my responsibility to make sure they are happy. That they do not have hurt feelings, that they are not “made” angry by whatever I do. Punishment reinforced this idea, that somehow it was my job to please and appease others in my household, or any other part of my world. I had that power! I had to control it, no matter what I wanted or how I felt, how I disliked doing whatever was asked of me. I must please the other people at any cost.
Now, of course each person’s experience will have been different, but I bet a lot of readers will relate to this experience on some level.

One thing that has helped me tremendously is to learn to recognize “things I can control” versus “things I can’t” . This has been surprisingly difficult to learn after the first 30 years of my life being indoctrinated to this point of view.

I started reading about control, about who can control me, (only me!) and who I must please (only me). things I can’t control include the weather, people’s opinions, disease, catastrophe/accidents, other people’s actions, beliefs, thoughts, feelings. OH? I wasn’t responsible after all when you cried over something I did and punished me over and over for it? OH? I was not responsible for the times you hit me because I did something that “made you” be angry? This was an extreme revelation to me… I had such a difficult time processing the fact that persons chose to respond to me and my behaviors in their own ways of their own choosing, and that I, in fact did not cause their hatred, their anger, their violence, their shaming, blaming, controlling behavior toward me. When people said I “should” do something, or I am “supposed to” do something or feel something, or believe something, I thought they had a secret manual or list of rules that I was not able to access. I believed that they were telling me rules I must live by, rather than understanding that these were things that THEY believed, things that THEY thought, things that THEY wanted from me.

Many of the ways we deal with our world are due to habit or learned as children to survive our struggles in “less-than-understanding” or healthy situations growing up. The ways we learned to protect ourselves may not work well for us as adults, but there are so many ways we can choose to behave in any interaction with others… we just need to find out what our choices are and learn how to use the newer and healthier tools we have access to as we discard our old struggles and make adaptions for ourselves as we age. It is Ok to reach out to a counselor or therapist or social worker to ask for help and explanations if you find it a struggle to sort all of this on your own.

Look for more information about healthy self assertive behavior, look for more information about things you can’t control, things you can, and learn how to tell one from the other. You may suddenly find yourself feeling freer than you ever have before.

When we are able to make our own choices depending only on what is right for us and be free of others opinions, feelings, agendas and wants, we are better able to have healthy relationships and fewer worries and struggles. Check it out!

Who am I ???

Finding your authentic self after diagnosis


There has been much discussion lately, in the online forums I attend , about masking and finding one’s own identity.
How to drop the mask and be more authentic? How to know who I really am beneath all the adaptive and self protective behaviors I have learned over my lifetime? How do I know which parts are “real” and which parts are camouflage for self protection or ease of coping?

I was at a loss for a long time about these questions. For me a lot of these questions did not apply because as I had aged, I had adjusted my style of dress, my social behavior, my willingness to put up with discomfort, etc.
I had become more authentic to myself for the most part before I learned of my autism.

It might be a process of ageing that we become less willing to put up with social and physical discomfort or meaningless rituals or distressing social situations, or I might have been lucky to have sorted out sources of discomfort and to have allowed myself to discard those things that were most difficult and distressing to me.

I understand the need to sort it all out, and to self accommodate in order to have the best experiences that life has to offer and to eliminate pain and discomfort where we can.

May I suggest we start with the things that we find most difficult and distressing? By figuring out different ways to do things, we can eliminate at least some of the things that are hardest for us to tolerate.

I learned to avoid physical discomfort first. Stopped spending hours on clothing, hair, makeup, and worrying about being “in style” or if I looked right. Flat shoes, loose fitting clothing, easy hair cut, minimal makeup applied only for very special times. Works for me! Even within dress codes, unless a certain specific uniform is required, there is usually some leeway.



I got rid of the scratchy couch that I could not bear to sit on, the bright flickering fluorescent lights. When I lived alone I did not use TV or Radio. I now remove myself to my quiet zone if my husband wants to participate in things that drive me wild (TV and Radio for example).
I have bright clear lighting that doesn’t flicker in places where I need it for reading and close work.
I stopped forcing myself to go to concerts, listening to podcasts or videos, trying to interact in large groups (4 or more is a large group to me), stopped going to restaurants, shopping malls, and other places that caused my sensory struggles to make me anxious and put me in ‘stampede mode”. What was the point?
If things like wedding receptions, anniversary parties, retirement parties, etc send you into panic or meltdown, consider a congratulatory card, note, email, or phone call along with polite regrets.
( you don’t have to explain, just say you are sorry you missed their big day but wanted to send congratulations or whatever message you’d like to give).


I found new ways to get a lot of things done, adapting them to my sensory struggles so that I no longer suffered loud noises, chaotic surroundings, etc.

In replacing those old painful experiences I found joy in solitary walks in nature, taking photographs, doing crafts, listening to my choice of music (peaceful or upbeat and not dissonant, no lyrics since I can’t readily process spoken or sung words), I found the ‘real’ me.

I lost a lot of anxiety and anguish by simply declining invitations to loud parties, noisy social gatherings such as dinners in restaurants, classrooms, malls, etc and substituting meeting with one or 2 people for quiet shared activities.

It may require others in your life to make adjustments too, or you might need to compromise to keep peace, but I urge you to find your most distressing activities and find ways to eliminate them or change them to things that provide pleasure or at least reduce discomfort.

Change clothing, change shopping habits, change the way you socialize or interact with others, change decor or arrangements within your home to accommodate your worst struggles. Many of us have it in our power to make adjustments that can make life so much better. You do not have to do anything one certain way, or in many cases you might not have to do it at all.

Sometimes we need to just stop and consider alternatives. Change can be scary, but taken in little bites, and not all at once, sometimes changes can bring about a lot of relief and comfort in exchange for the pain, anxiety and frustration.

What can you do, one step at a time to remove painful experiences from your life and to substitute or build new and pleasant experiences for yourself?