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!

INFODUMP

Autism and information sharing

Have you heard that term? “infodumping” ??? It refers to information sharing.
It seems to have its origins in negative attitude toward the autistic inclination to share information.

I began reading in depth about infodumping or information sharing recently.

Of course most articles were about children and how to keep them from “infodumping”, redirection was the most frequently advised response. I recently met a mother and her autistic offspring. Mother told her children directly, when I want to know about that, I’ll ask you. (a less direct way to say “shut up”, “I don’t want to hear from you” ) What message does that send to those children? ( see the last statement in above parentheses ).

When we are enthusiastic about any topic, we want to share the excitement of what we are learning, have learned, with others. We reach out to share what seems like magic, stimulating, enthusiasm-making information only to be rejected and told our excitement and interest does not matter, that nobody wants to hear about it.

Information sharing is one of the primary ways we reach out to others, and can be used to teach conversation skills, reinforce self esteem, and our enthusiasm for any subject can be used to help us find our way in the world.

Associate any task with our interest and you have our immediate attention. Example: I hated math in general when young, but when I learned I would need math to calculate how much hay to buy my(imaginary back then) horses for a day, a month, a year, etc. I could see it was something I would need. Doing math problems about horse related things made me less resistant and more receptive to using math.

Information sharing is a way of trying to reach out and make our interests relevant and interesting to others as well.

In reading about infodumping/ sharing interests I figured out that my blog and my FB interest groups were all forms of information sharing. We don’t share emotions, we share facts.

Somewhere very early on in my life I learned to hide my feelings and that they were useless to me. Instead I figured out that facts were tools that I could use to figure many things out. I could not trust my emotions or my peers/parents/siblings emotions to guide my behavior and my thoughts, instead I relied on what I thought were facts.

I immersed myself in learning facts, finding more out about any topic that interested me. Facts were tools I could use, could relate to, and they did not change from day to day, and if they did change, I could get more information to understand why.

Today, my life is still filled with “information sharing” activity, maybe even more than before. I have hope that others like me will understand and find relief and enlightenment in the sharing of autism related information.

My daily researching and interacting with others on line, information sharing of things related to my favorite topics , is me trying to help others, attempting to help with answers to questions or information to apply to ways to understand ourselves.

Look at information sharing as making oneself vulnerable in order to share a small part of one’s passions and caring.

Look beyond the fact that YOU might not be interested, but that the person sharing the facts they have so passionately gathered with you in order to find a connection or recognition of the things that are important to them.

Can you see the person and the enthusiasms, the passion, the interest in that “infodumping” person wanting an interaction so badly with you and hoping you might understand?

Communication is always a “2 way” (or more ways with more people) thing. Are you doing your part to reach out to the autistic individuals in your life? Do you expect them to interact with you on your terms only, in your way, expecting them to adapt and interact only in ways of your choosing? Or are you willing to look behind simply expecting certain behaviors and communication on your terms and see how hard the autistic individual is trying to relate or get you to relate to them?
Are you willing to learn about the ways autistic individuals communicate, and reach out to understand, accommodate, and learn more about their lives, their experiences, their unique abilities and gifts as well as blaming and shaming, coercing them to fit society’s idea about what they “should” be, instead of who and what they are?





Autism Alone

The actual need for intervals of solitude


” I want to be alone” a famous line from reclusive actress Garbo years ago.
It stands for most autistic individuals today and every day, too!
Because of the high energy demands the every day world puts on our abilities ( or disabilites) in processing and focus, etc, we actually need time to “re-boot” after long periods of doing every day things.

Dealing with the demands of daily living requires intense concentration, and coping with many stressful things such as sensory overload, requests as sudden demands for performance (answering questions, responding to requests to do anything, finding answers/ solutions to unexpected small problems of daily living, etc).

Many things that are easy for neurotypical individuals, which they can perform without a thought, require intense effort for an autistic person.

We actually need intervals of being alone to rest, re-charge our energy levels, gather our emotional resources, and to process all that we have worked through during the busiest times of our days.

This is not being “anti social” or even “asocial” since most of us do indeed enjoy companionship and non demanding social interactions at various times.

We need to isolate ourselves, the need is imperative and sometimes even urgent.

We need to have an outlet or escape from demands of others , too much input happening too fast for processing, too much noise, too many “things to do RIGHT NOW” etc.

It is not being lazy, nor is it unusual or unhealthy to need alone time to self soothe, to recover and rest, to gather our shattered and distressed thoughts and emotions and sort them.
Almost all of us need time from the demands put on our processing abilities/disabilities .
Autistic individuals may require more time to do this than “normal”. We expend so much more energy and effort to do “average” “every day” tasks.
Our disabilities are mostly hidden, we have no physical signs of the sometimes extreme difficulties we have to perform even what seems like simple tasks to others.

The relief that comes from giving ourselves that break, that quiet time, is immeasurable.

If we don’t make sure that we allow ourselves time, we may find we are much more prone to overload, shutdown, meltdowns, etc.
When can remove ourselves to quiet places where we can be alone at the first signs of distress, we are better able to rest and recover and regain the ability to take life as it comes again.

Our neurology simply works better for us when we have time, space, and room to rest and recover between what amounts to assaults on our senses and intense demands to perform over daily life, let alone events that easily overwhelm us:
Family or job crisis situations, monetary struggles, struggles with housing, caretaking others with disabilities, the list goes on!

Make sure you are giving yourself time and space frequently.
You are worthy of rest, you are worthy of peace, you are worthy of self care.

Missed Diagnosis of Autism

Misdiagnosis of “something else”

Diagnosis of autism in older adults is becoming statistically more frequent, but many of us have garnered multiple other diagnoses by the time our autism is recognized. I have read articles repeatedly that discuss how there is such a high frequency of mental health diagnoses among older autistic adults. I have read studies, I have read on multiple forums and discussion pages how individuals have been given drugs, shock treatment, years of psychotherapy or counseling, all to no avail. For many of those late diagnosed individuals uncovering their “hidden” autism was the key to better mental health and self understanding.

I was given 5 “diagnoses” by one professional neuro psychologist early on in my search for diagnosis. I learned after the testing sessions (expensive sessions over 2 days which required travel and an over night motel stay) that this person had NEVER diagnosed a single person with autism. He had to give me diagnosis of 5 other mental conditions to explain my test results and answer my questions. I already had 2 diagnoses from other professionals, anxiety and depression. I took those test results with me to the very experienced autism specialist ( who had diagnosed many adults with autism and worked with them afterward, yes I asked! ) He pointed out that my very irregular test results, with super high performance in some tests and super low results in others showed very clearly my uneven neurological development (autism)
The first professional had simply no familiarity with autism so applied symptoms he was familiar with to come up with diagnoses that explained my test results. He could not see the autism because he had no training besides his initial schooling in 1970 , when autism was not clearly understood or well defined except in extreme examples and was known as infantile schizophrenia.

This points out that many of us may find that our diagnoses are noted to be “atypical” , since we don’t fit the classic description of our diagnosis but its to the best knowledge of the professional that gave us the diagnosis “atypical bipolar” “atypical schizoid personality disorder” “atypical borderline personality disorder” etc. If you have “atypical” diagnoses, and have been through multiple failed attempts to treat the diagnosed condition, consider that instead you may be autistic. I am still anxious and sometimes depressive, but even the depression has lifted greatly now that I know I am autistic and can make adjustments to my life to help remove stress and avoid the most difficult of my autistic struggles.

Being autistic and not knowing it, I learned a lot of unhealthy coping mechanisms early in my life. I am a survivor, but I needed help (therapy) to explain how I could make choices in my life and how I could make healthier choices.

I had to have somebody teach me that I had alternatives, how to set boundaries, how to say NO and how to enforce my choices with healthier responses than those I had used in the past. It took some coaching and some practice, but life is its best ever. If you are struggling with seemingly untreatable diagnoses, if you are in constant emotional pain, if you can not find relief in your current situation, it is time to start asking yourself what needs to be changed, whether it is to seek diagnosis for autism, to seek therapy or finding a “life coach” to help you see other alternatives, I hope you find what you need.

But first you have to be able to see that there might be healing answers you never dreamed of.
Don’t be afraid to reach out and to keep trying until you find the answers. Life does not have to be continual emotional pain and misery. You deserve happiness and peace.


Autism Twice Exceptional

2E have you heard of this?


Yesterday I heard a new term to add to my autism vocabulary.
“Twice exceptional individual”.

I had never heard of this before, although I have figured out that I fall into this category!

Twice exceptional as definition of a group of individuals evidently came about in the late 1990s when educators began to see that some gifted individuals also struggled with autism, add/adhd , or other neuro-biological diagnoses. The common use of this term began around 2015 when several studies were done to help define struggles of those with intellectual gifts but also having learning struggles of any other sort.

Included in this group are physically handicapped, or any “otherwise able” diagnosed persons, those with neurological or mental disorders, etc. ASD,ADHD/ADD dyslexia, bipolar , on and on.

The second part of the 2 , in “twice exceptional” is that these individuals are also gifted in some way or ways that make accelerated learning or programs desirable.

Because of the first part of the 2E, the diagnoses, many individuals struggle through school and need extra social support, extra encouragement, extra accommodations to help them get the most out of the accelerated classes they participate in.

Thinking about this “new” category of individuals, I recognized myself at once.

I have tested very very high in things about words… vocabulary, comprehension, language use, etc. but I also have struggled all my life to learn or interact through things like lectures, demonstrations, movies, etc.
I did not learn until very late in life with thorough neuro-psychological testing in attempt to find out if I was autistic- that I have sensory processing problems.

With only 25th percentile visual processing capabilities and 35th percentile audio processing, I am truly learning impaired, although nobody knew or understood it while I was of school age.

My vision is poor without glasses and with them I do much better, test in the average category. My hearing has tested as being acute, with ability to pick up very low and very high ranges outside “normal” or average hearing. Seeing only my failures, my parents, family members, educators, etc, my lack of performance in the educational arena was solely due to me not paying attention, not trying hard enough, being lazy, etc. I alone was at fault for my failure to perform.
This has been the mantra chanted at me all my life until my diagnosis at age 68. It is your fault you fail repeatedly, its your fault you fail socially, in performance of tasks, in relationships, in so many other ways. You should do so much better, you are lazy, you just don’t care, you aren’t trying hard enough. That shaming and blaming attitude shaped my world, and I could not help believing what they said was true, but I cried over and over “but I don’t know how” when told to shape up, get my act together, do better, stop feeling sorry for myself, get with it, pay attention, try harder…. The pain is still there just under the surface. It is a raw and bruised, bleeding sore that has sort of scabbed over, there is even scar tissue building, but once in a while the scab gets knocked off again and the sore, the wound, the hurt is still there. It probably always will be.

It has been such a relief to let go of that burden and to see that autism was at work behind the scenes without anybody knowing or suspecting.

In junior high after testing, I was moved to an accelerated learning program. I did well at first but soon flagged and failed, and at the end of just one semester was placed in the “slowest of the slow” classes. Humiliation and public failure, shaming, and mockery included on all fronts. “guess you’re not so smart after all”

Everything was all my fault, once again (as usual).

I went into deep depression, what we know today as “shutdown” and truly gave up even small attempts at trying to learn or perform at school.
That slump lasted from 7th grade through my sophomore year at high school.
I wonder how things might have been different if we had that interesting educational category to define my “special needs” back then.

The cautionary ‘moral to the story’ is that if a student is not doing well at school even though they test high and seem to have no physical deficits, perhaps there is more “going on” beneath the surface and more investigation about the way that individual processes information may be needed. Don’t go the “shame and blame” route until all possible other reasons for “failure to perform” are completely ruled out. If you have never “performed to expectations” perhaps sensory processing struggles are hidden in plain sight, and testing can help you too. It is never too late for self understanding and self accommodation! Diagnosis can make such a huge difference in even elderly adults’ lives. (Ask me how I know! )

Autism and being lonely

Is feeling lonely as an autistic any different than the neurotypical experience?

It is the height of summer in northern Michigan here in the USA. Yesterday was the 4th of July, and it is a huge birthday party for the country all over. There are traditional get togethers, family camp outs, cook outs, beach parties, boating parties, baseball games, volleyball games, sand castle building, swimming, and loads of other summer activities, followed by huge displays of fireworks in every city. small or large.

We have a small home in a small community on Lake Huron. We live only 2 blocks from a public park with a beach. The park is the location of the “official” city fireworks, so very early in the day people begin to gather in the park. by noon, the side streets in this are are filled with cars of people going to the park.

My husband loves to walk on the beach and watch! I go with him each year to look at the sand castles built for a traditional contest. We pick our way through the crowds of folks , some old, some young, some single, some couples, some families. A wide range of people of all shapes and sizes, all doing some summer activity right there in the midst of many many others doing similar things. ( I guess except for the group one is with- this must be a form of parallel play?)
It crossed my mind to wonder why people enjoy this, with so much noise, so much chaos, so much physical discomfort. Of course I know they must experience it quite differently than I do.

So, I want to tie this in with feeling lonely.

I read so many articles and studies, reports, blogs, and the like, and have been trying to remember the lonely feelings I experienced particularly badly in my youth.
I now believe that it was not lonely as in longing for companionship, but lonely as in longing for acceptance and approval.

I think there is a difference!

Now I know myself to be autistic and I understand myself so much better, I am starting to pick out some threads that were constant in my past. I always felt rejected and felt at though people were angry or disgusted with me as a matter of course. This had a basis in reality.

I was physically repugnant due to a severe case of acne which left my face inflamed and many people could not bear to look at me (this from about age 10 through high school and early 20s). During that time I had little guidance other than corrections and criticisms from family. I did not learn social nuances or good manners, did not learn many things I could have been taught. I did not have good examples to follow.
I was only told what NOT to do, told I was bad or wrong, and punished repeatedly in many ways. I was desperate for acceptance and approval. If I had felt loved and accepted I doubt I would have felt “lonely ” at all. Here I am at age 72, finally figuring out things that most folks probably do in their teens? Even earlier in life? ( I am amazed at my life and my experiences and so grateful to finally, even at this last stage of life to be putting the pieces together. )

I think of being lonely as longing for companionship and interactions with others. Longing to be present in company of others, longing to socialize, communicate, joke, play, do activities together with others. Am I wrong?


Feeling accepted and approved of as part of society, whether family or out and about and doing solitary activities goes deeper. Humans are “herd animals” and everybody wants to be part of the herd, even if on the edges or at the bottom of the ( it is very real!) pecking order.
Those of us who the herd rejects are indeed lonely, but in a way that those who are part of the herd will perhaps never know or experience.

Today I see myself as part of the herd, although I am lowly status and on the very edge of the herd. People say “good morning” , sometimes somebody will hold a door open for me if we are passing at an entry or an exit. People look at my face when they speak to me. People sometimes even joke with me while we wait in an elevator, a long line queued up for some service, a waiting room. I am seen! I am accepted perhaps not as part of any social circle, but I am part of the herd.
That is the part of me that was so lonely when I was young, that was the part of me that hurt unbearably early in my life.

That was what I had hoped and prayed for in the lonely years.

Autism’s version of “lonely” is perhaps different than the average human’s “lonely”. At least it was, for me.


Adjusting to recent autism diagnosis

a few things can make the adjustment easier

adjusting to our new understanding: 5 things that might help!

Finding out we are autistic throws “everything” we thought we knew and understood about our selves, others, our past, our nature, our lives right up until we are finally diagnosed late in our lives, into new perspective.

Suddenly learning how autism has been working within us all these years without our knowing can be stunning, disconcerting, upsetting, exciting, a huge relief and also a huge disappointment causing grief for our past self, time we now see as lost, and shaking us to the core because of new self perceptions.

The longer we have gone without knowing our diagnosis, the more there is to sort!

Here are things I have figured out that helped me through the rough days following my self identification and 3 years later professional confirmation of my autism diagnosis.

Learn as much as you can about autism: This helps with self understanding , we can figure out exactly what our neurology is doing through autism, figure out our best strengths and help support our worst weaknesses, once we understand our own neurological “wiring”.

Books, blogs, online videos, articles from groups and organizations, reading studies “about” autism can help us see ourselves both as we are now and as we were in childhood, young adulthood, middle age, etc. Knowing more helps us understand all those “whys” of our lives, helps us see ways we can make our current lives better by making adjustments in the way we do things every day. Information is power we can use !

Find emotional and social support : There are many online autism support groups, they can be local or international, the culture and intent of each group will be different and you may have to try several over time to find a group that is right for you. There are groups for parents, groups for those with multiple diagnoses, groups for gender identities, groups for those with autistic parents, groups for those who do not speak, for those with interests in certain topics, etc.

Joining such a group provides support and assurance that we are not alone, that others have gone through similar struggles, had similar issues, needed certain specific explanations, and reassurance that if they have got through this, you can too!

These support groups are generally especially for problem solving and asking questions about personal struggles. They are generally private, closed groups, so you may have to sign in. sign up, agree to abide by the group rules and stay within the group guidelines. It might take several tries to find your on line home, but it is worth it!

Where else would we find insights and experience, and the combined years of wisdom got from living autistic lives to help us find solutions to our problems? If we live in a higher populated area there are also often local “in person” support groups , which again feature special focus on support, information, recreation, specific age groups or other limits and rules we will need to be aware of.

Seek counseling or therapy:: if we have emotional pain or struggles with anger, self injuring behavior, addictions, eating disorders, multiple diagnoses, destructive behaviors around food or other bad habits or if we have constant depression or anxiety. We can figure out where we can change things.

Living a life of distress and frustration, filled with misunderstandings and emotional hardships seems to be more likely than not for most adults who have made it to old age before discovering our autism.

We may have learned to cope with our struggles in many unhealthy ways. Therapy can teach us new ways to communicate, help point out things we might not have understood in our history or present lives and help us substitute healthier ways of living and “doing life”.

Due to our autistic rigidity, we may not be able to see we have choices and alternatives. We may have to try several therapists before we find one we can communicate with, but they do not have to have experience with autism, only the willingness to work with us to find solutions to our day to day struggles, our trauma, or other problems that need better solutions.

If what we are doing is not helping, we can learn to do something else instead.

There is almost always a “better way” and therapists are there to help us find those ways.

Give yourself time! It has taken all our lives to get here, it will probably take some time and lots of emotional “homework” to sort it all out with our new perspective, to figure out how to make our lives better, to find new ways to “do life” with our new understanding. Your best life starts now. Take good care of yourself, keep trying, consult others who have “been there- done that” , get advice, consider options, we will find that although our basic struggles have not changed, our ability to cope, our self understanding , our new insights to others and our own personal history will begin to grow and change as we move forward to our new lives as “actually autistic”.

Make a “safe place” or a haven, a nest, at home: . We need a place where we can refresh our minds and souls in safety and comfort. It can be a quiet corner anywhere, a special chair, a bedroom hideaway. a den, a place that is filled with things we can find comfort in.

We almost always need a refuge/retreat or a sheltered space where we can re charge our emotional and physical “batteries” after a hard day, an argument, a meltdown, any upset. The nature of autism makes this important for self regulation and self care. You can make mini-safe places while on the road, at the office or workplace, and find new ways to give yourself comfort and escape or rest when you need it. Try brainstorming with others in your household, group, or those online problem solving forums. The ideas that others have come up with can be so useful!

Wrong Planet

that feeling that you don’t belong

So many autistic individuals report feeling that they were born in the wrong time, the wrong body, the wrong place. We are not comfortable where we are or being who we are. We explain to ourselves that we would have done better somewhere else, or in another time. “strangers in a strange land” Misunderstood, misunderstanding, unhappy in sensory overload of bright lights, noises, too much hustle, and a thousand other things that others around us seem to cope with competently and without discomfort.

This seems to be one form of “imposter syndrome” where we feel we are not what we are expected to be, playing a role, not actually what we are defined as by others or seen as being even within ourselves.

I had this all my life, too. Until my self understanding and diagnosis of my autism, I always thought I would have done better in another age or state of being. When I learned about my autism, my perspective changed and I had the long sought answer to that question of why? Why did I never “fit in”? Why was I unable to do so many of the things that people expected of me? Why was I uncomfortable in so many situations that others handled with ease?
The answer was Autism. My sensory processing was “off” in timing and my perceptions were skewed in so many ways. I had no idea! Nobody else suspected either! No wonder I was confused, frustrated, angry, hurt , so frequently.
Are you feeling like an outsider? Are you frustrated and confused or physically uncomfortable in situations that others take as a matter of course? Are you blamed constantly for doing things intentionally when you had no thought or intent such as others label you with? If life seems to have been exceptionally difficult for you, emotionally painful for you, and you have struggled where others seem to do things easily, take a bit of time and see if Autism might be the answer for you too!

Autism adjustments

We can choose how to live better lives after diagnosis


Suddenly everything begins to make sense! All of the “whys” of our past, our misunderstandings of what happened, ideas about who did what and why, beliefs about our histories, our families, our experiences and our own self concept are shaken and shifted to the very core of our being.

Knowing how autism acted in almost all parts of our lives and how own behavior, thoughts, actions, and beliefs have always been affected ( since birth!) by autism is validating, upsetting, a relief, a sad disappointment, a painful and exultant discovery for many of us. One dominant emotion may keep us involved for months, hours, weeks, days… we turn it this way and that looking at our pasts, others, our selves , and work out how it “really was” or “really is”.

I can hardly describe all the changes my mind and emotions have gone through since I first suspected my autism.

One of the best parts of finding out I am autistic in my mid and late 60s from first suspicions to confirmation through official diagnosis, is that I have learned how to make adjustments to my life to make it better and easier for me.
I have been able to give myself permission to avoid doing social things that are distressing and difficult by changing my schedule to do “something else” instead. Instead of going to the wedding or big family party,
I am able to write a note or make a phone call saying I won’t be there on the day but that my heart will be with the celebrating person(s) and I will deliver or send a gift or a card instead.
If somebody wants to meet in a crowded restaurant, mall, or do an activity involving high levels of noise or crowds, I feel comfortable proposing something to do in a quiet setting or other peaceful location or activity.

Maybe I have to regretfully say, “sorry, I won’t be able to do that this time”, but most friends and family will forgive me. I will counter with another proposed activity at a later date, one that fits my abilities and sensory struggles better.

Schedules and activities, places to go and things to do can be changed for self accommodation once you know your personal struggles and recognize those things you can choose to do
( those which do not set off the anxiety, migraines, cause illness or strong discomfort.)

It is OK to say no to those things which are a struggle for you.

No matter what others think or say, self care must come first, and there are many ways of meeting “social obligations” without making yourself sick with stress over any proposed activity.

When we recognize our sensory struggles we can adjust our physical surroundings to help us find calm and quiet, help us do household chores, paperwork, self care and personal care, etc.
Just because grandma always used to do something a certain way does not mean you can not use any other method to do the same thing. Cook all day, bake and make everything from scratch? You don’t have to! You can buy from a deli, take carry outs home, buy pre prepared frozen dinners, go out to eat…. in almost every situation there are multiple options.

You might not have ever thought about changing things up, doing the same things or trying to force yourself to do the same things unsuccessfully over and over. (autistic rigid thinking in action there!).

Instead, if anything in your life causes constant distress, anxiety, emotional or physical overload, consider trying a different approach to accomplish any goal.

We can live better and easier lives by making changes, but first we have to recognize the things that are the most difficult for us,

Next we can give ourselves permission to do anything differently to make our lives easier and less filled with struggles. It is OK to try something different!



Autism and Medication

What about drugs for Autism?

If you are over 65, you can probably remember when there were family doctors who made house calls. You are probably aware of many of the huge changes that have taken place in medical care from the beginnings of your childhood. We live in the age of medical miracles.

We have seen the development and benefitted from a life time of life saving drugs, vaccines, better nutrition, health care, and the development of better understanding of many rare developmental conditions, syndromes, mental illnesses, help with sanitation, childbirth, genetics, neurology, and so much more.

I would be dead at least 3 times over except for the miracles of modern medicine.

So it is a reasonable question to ask : “what about medication for autism”???

There is no medication that treats autism.

Autism is present at birth and is due to irregular development of the person’s neurology (the nervous system, which includes the brain)
We are individuals with differing development of neurology, and not one of us will have exactly the same struggles or trials, strengths or weaknesses.

Today those affected by autism directly (the autistic individual) or indirectly ( concerned caretakers, parents, family, friends, spouses, etc) can look to help from medication for some of the worst problems we may have.

Those who have health problems of any sort can ask for help and referral to specialists in almost any field of medicine.

New medications are being developed for those with emotional and behavioral struggles, with seizures, with heart, circulatory, gut and digestive problems, pain, structural and physical struggles with painful conditions such as osteoporosis, arthritis, and many effects of syndromes and conditions such as Ehler Danlos or other genetic problems we may have been born with.

We can get help for lack of sleep , We can get help for gaining or losing weight and treatment for eating and digestive issues.

Although there is not a single available “autism drug”, the miracles of modern medicine are available to millions of individuals in the USA today. If you are among those millions with access to health care, please don’t simply say “I won’t take medication”. Not all medications are bad, many can be life saving and life changing.
Today there are many of us alive due to getting medical help for many, many (yes medical) conditions surrounding our autism. We can explore these options and with the help of a good doctor, explore our options for treating so many of the physical struggles that seem to go along with our autism.

As a sort of side note, the inspiration for this blog came from my recent experience with a new (to me) drug that was prescribed for my struggles with sleep. I have struggled with anxiety and depression all my life from age 8 onward. Sleep simply wouldn’t come, my anxiety has been so bad. I did not even recognize that anxiety was the basis for my sleeplessness.

Doctor tried several medications which I rejected for side effects such as painful cramps or dizzy spells which impaired my ability to do things while awake. Third try was an absolute miracle. I am finally sleeping 7 to 8 hours every night. I have no memory of how long it has been since this happened !

As a side effect, my life long anxiety and depression have abated and I realized only yesterday that I have finally found peace and for the first time in my life recognized a sense of actual well being . Amazing!!!!!!!
Truly, today’s medical prescriptive drugs can be miraculous !!!

When used carefully (responsibly following directions and wisely with the cooperation of a caring specialist), they can be aids to living a better and more productive, healthy life.

Certainly it is a choice available to many. Don’t rule medications/ drugs out of your life simply because you fear possible side effects. There are also life and sanity saving benefits to many medications available today.