After Autism Diagnosis

when your diagnosis says “autism”

After the diagnosis process we must adjust to the idea that we have ‘different” neurology which can give us struggles that most adults in the world’s population simply do not have.
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The idea that we were affected all our lives and that we did not know or understand is something that takes a lot of emotional homework and self education as well as eventually calling for self -accommodations. Suddenly seeing everything in our lives, our self understanding, understanding of others, our ideas, thoughts, beliefs over absolutely everything in our lives right up to this minute is stunning. Its an entirely new perspective and so many things look so different once we know our diagnosis.
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Diagnosis is like culture shock, even if we expected it, and this new perspective takes a lot of sorting! Many people report upsets in the days of processing this new view of life both past and present : sudden anger, resentment, grief, relief, “aha” moments of sudden insights where so many “whys” of the past are answered by the word “autism” and the new understanding it brings us. Of course we are shaken to our core!
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Do your best self care right now, you are going through sudden emotional whirlwinds, changing and growing with all the new insights, you will likely begin to make self accommodations as you discover yourself struggling with yet another part of your daily life.
you will need time, need rest and food and drink,to have the emotional and physical resources we need, we eventually apply self compassion and self forgiveness as well as forgiving others. Nobody knew!
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Best of all you will discover you are not the “only one” and that everything and every struggle was not “all your fault” due to moral failures or lack of strength of character or many other traits others assigned you over your previous life. We struggled to do so many things in daily life that others did naturally and unconsciously. We are survivors in so many ways!
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Learn all you can about your diagnosis. There are so many recent books, podcasts, videos, social media, blogs, personal pages, and autism groups you can join online as well as “in person ” in many places. I find the online groups wonderful. Where else can we get so many insights, so much information, suggestions and explanations from others who have lifetimes of Autism experience???
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As you get insights about your personal struggles, you can begin to change things about your routines, clothing, arrangements, activities, and make adjustments or find “work arounds” to almost any struggles to make your life easier every day.
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Eventually the whirlwinds settle , now 5 years since my diagnosis at age 68 life has never been better. I hope this for you as well.

Autism Escape Plans

Do you have an escape plan? You should have one

Survival technique #1. To avoid overwhelm remove yourself from the situation as soon as you notice you are feeling overwhelmed, stressed, or distressed.
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This is a sort of “insurance plan” to make sure you do self care for yourself immediately instead of trying to tolerate something that causes you to feel overwhelmed, upset, afraid, distressed. Meltdowns and shutdowns happen when we have too much input and our processing systems can’t keep up.
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In long experience with my spouse, I know I can tell him I am headed to the car, outside in the yard, to the back of the building, the washrooms, or any other place to remove myself from the feeling I will soon be overwhelmed in a new or different place.

I have escapes built in at home with my quiet place and comfort items, and I can go indoors or outdoors at will to avoid input I want/need to avoid.

I mostly don’t venture out of my comfort zone, and I am old enough and experienced enough at my age (73) to detect the signs and to be able to avoid situations which may be distressing to begin with. I almost never subject myself to overwhelm just to please somebody else or because doing the “thing” is expected of me.
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Sometimes we can’t avoid being in such distressing situations, where there are things we must do, places we must be, etc and for some reason other ways can’t be substituted. If you are headed into the unknown, make a plan ahead of time.
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Arrange with others ( if you are accompanied) ahead of time so if they can’t find you, they know where to look. You will have gone to your “safe place”. If you don’t have an escape plan or have never used one, its time to think about this handy self accommodation/ self care technique and put it into action.
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There is no reason to subject yourself to shutdown/meltdown/overwhelm or expect yourself to endure painful or upsetting experiences just to please somebody else. Self care always first; make sure you have a backup plan when you venture into potentially upsetting territory, then make your escape knowing it is understood where you will be found if you need to shelter yourself from too much physical or emotional input.

Self Understanding and autism

How do you get to know yourself?

That question may sound funny to older folks, we have experienced so much in our lives, if we don’t know ourselves by now, will we ever?

One of the things that happens when we learn of our very late autism diagnosis is that absolutely everything is seen in a different perspective.

We suddenly understand a lot of “whys” from the past. We can see how our autism worked behind the scenes in so many ways to cause struggles and how autism may be working in us today. We learn we have been conditioned to hide our autism, to think of ourselves as inept, perhaps think of ourselves as a loser, a bad person, a problem or a trial to others. Many of us hide from every day life and sensory input that can be overwhelming.

Many of us force ourselves to do “normal” things in order to please others (and we suffer from stress, distress, exhaustion, and multiple anxieties and dismay with constant pressure to “do it right” “stop messing up” and constant criticism when we fail to perform as others expect us to.

Many people who are recently diagnosed have felt lost and confused when they obtained diagnosis. “now what”??? “how do I stop masking”??? “how do I find myself beneath these assumed traits (from a lifetime of trying to fit in). ???

Don’t feel pressured to “take off the mask”. Some articles and discussions in today’s media give the impression that we must openly and defiantly be bold in declaring our autism and putting a new bold front forward. That may be fine for some. But for others, the comfort of staying quietly on the sidelines can be a comfort and a refuge. Social masking is not done only by autistic people.
Much of society in general conforms to expected “norms” in every day life. To get a job or get things done anywhere we are in public, we wear a persona, dress in socially accepted “uniforms”, wear socially accepted or culturally accepted hair styles, makeup, shoes, jewelry, and do socially acceptable things… we learn how to use “inside voices”, we learn to be toilet trained, we learn basic hygiene, we use social manners, say please and thank you, wait for our turn in line, etc.

Masking is useful to everybody in most societies at some level.

You can find your own comfort level about how far you are willing to cross social boundaries with clothing, manners, self decoration, behavior, or if what you are doing currently or have been doing all your life is right for you. You don’t “have to” take off any more of your “mask” than you want to!

Many of us begin to have better self understanding and can see patterns we developed as self defense in very early childhood (once we learn of our autism). Many older people ( born before 1980) were brought up with corporal punishment or verbal abuse as part of our every day lives, essentially the “old fashioned” form of coercive therapy, where you are punished for stepping out of line and doing anything that displeases the “powers that be” whether it was parents, your minister, your boss, the neighbors, unknown others. We may have learned to fear displeasing others at physical or mental/ emotional cost to ourselves. WE may have learned to please and appease others at any cost to ourselves to assure ourselves of emotional or physical safety, sometimes even before we could speak (see also trauma and autism for better understanding) .

We may have become self protective through aggression, becoming oppositional, defiant, resistant, or we may have developed other techniques for emotional and physical survival and self defense. WE may not be at all aware of these behaviors or their root causes until we understand our autism and how it worked behind the scenes, altering our understanding and our responses to the demands of others and the demands of every day life.

We may have developed unhealthy habits or turned to over eating, drinking, drugs, or becoming compulsive in many ways to help us through our days .

Seeing through the eyes of being autistic, we begin to recognize so many things of the past can be adjusted and changed, that we can step by step make changes in our own lives to make every day living easier and better, healthier and more in tune with our own abilities and disabilities.

This is the best part of self discovery and self understanding. We are not tied to the ways we have lived most all of our lives. We can change things to help ourselves move forward once we have this new understanding of how our autism affected absolutely everything in our pasts and affects everything every day in our daily lives today. WE can find and use self accommodations to make our lives better.

There are so many ways we can adapt our lives to our autism once we learn about our own neurology.

We might be overwhelmed by sensory input, or we might seek sensory input (or both in different ways and different parts of our daily living). We might struggle with physical limitations such as problems with balance, depth perception, hearing, vision, or gait.
As we begin to understand how our neurology gives us extra struggles (and also strengths in many cases) we can stop trying to live up to other’s expectations for us.

We can forgive ourselves for failing to meet others’ demands and find ways of doing things to help ourselves live better lives. We can stop forcing ourselves to suffer “every day” experiences that cause us distress just to please others.

For example it is almost impossible for me to watch tv, go to the movies, watch a ball game, go to a concert, go to the mall, ride a train or a bus, participate in anything where there are large groups of people gathered.
I used to try to do these things to appease and please others who enjoyed those experiences, but for me it was struggle ending in shutdowns, being sick to my stomach, headaches and deep anxiety. It was anything but enjoyable but I forced myself to endure sensory overwhelm in so many ways before I learned of my autism.

I have been able to find other activities and experiences more congenial to me and my autism, substituting dinner out at a restaurant for carry out to be eaten at a quiet location somewhere else. I can go to a museum instead of an art fair, I can go for a hike in the woods or at the lake shore instead of participating in a mass event such as a 5K run or a swim meet, a bike rally, etc. You get the point.
There are thousands of ways we can adapt our activities and our surroundings, the choices we make in our lifestyles and our clothing and “personal style”, and many small things we can do for ourselves daily to help us be more comfortable on every level. One small change at a time as problems, distress, discomfort, etc can become over a while, a new and better, more comfortable and peaceful way to move forward in your life.

Learn about your own worst struggles instead of forcing yourself to accommodate the demands of others no matter the cost in suffering for yourself. Find ways to change the things that give you the worst problems, learn about your own neurology and give yourself a break. Make self care a priority. If you need rest, find a way to get it! Adjust anything in your daily life that you can to make every day healthier and easier as time goes on.
If you find it a struggle and distressing or overwhelming, find “work arounds” to use instead.

After autism diagnosis

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!!!

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.

Autism Self Love

Autistic negative feedback” baggage” and learning to love ourselves.

Self love is a very difficult concept for me.

I think it is difficult for many other elder autistic people too. The very idea that we deserve anything as an individual has been driven out of our thoughts by negative feedback for too long.

From my earliest memories I recall feedback from others about my selfishness, laziness, thoughtlessness, worthlessness, my failures and my seemingly deliberate wickedness.

Those negative statements about me and my behavior, plus early and continual childhood training as a Christian (where everything is about taking care of others, service to others, selflessness, giving and humbleness) were absorbed early and taken to heart. Having no other guidance and trying to understand the rules for living life, it is no wonder I got so much of it wrong.

In a recent online discussion and subsequent blog ( Was there Love?) wrote thoughts about how most of us in my autistic forums on line felt unloved and unlovable. This is sort of continuing the theme and enlarging on it. What do we do with all of those negative feelings about ourselves and our lack of worthiness?

I got therapy at age 30 due to suicide attempts and depression/anxiety I could no longer control by my willpower alone. The therapist probably had his worst problems in me with my self worth and my inability to stand up for myself.
I did not understand that my thoughts and opinions or preferences had any value. I had to learn that I had worth as an individual, and then I had to learn how to express my thoughts and preferences, set healthy boundaries and above all, learn to take positive actions to keep the boundaries and to take care of myself instead of sacrificing my self in response to other’s demands and desires. I had learned to appease others when I was very small, to avoid punishment and anger. I had to be taught that I was a person in my own right and that it was OK to want things, to ask for things, to have my own beliefs and ideas. Autistic rigid thinking was at work, and I had no idea that I had alternatives. It was terrifying to suddenly be responsible for my self.. I had to take responsibility for my thoughts, my behavior, my ideas, and above all to take action to enforce boundaries to declare myself a person and not a servant, slave, or accessory. ( among other roles I was expected to play )

I was not able to get past the idea that I was at all worthy of being more than a puppet for others to use as they chose.
I ended up having to look hard to find the time in my childhood when I began to learn the negative things and believe them.

I ended up seeing myself between ages of 5 and 8, and being able to find the little girl who was so afraid and who felt so unloved and unwanted. When I was able to do this, ( and remember I can not picture a thing in my mind, so I need visual aids such as photos, models, maps, or drawings to “see” things), I purchased a sad looking child-doll (not a baby!) and put her near my bed so I could see her and think about that child and how I was now able to give her what she had need and not got. I took care of her in my mind and heart. I took pleasure in giving her new clothing, imagining her being cherished, supported, fed and cared for, helped with struggles and given love. I was able to transfer those feelings first to my childhood self, who had missed it all, then to my middle school and teen years and the years of my early 20s.

Breaking though that initial barrier of feeling unworthy took a lot of time, though, and emotional homework. I cried for that little girls a couple of times, but not for long. I had been trained to believe my feelings were not worthy of being recognized and taught to hide them deep within myself. That was yet another skill to learn, to identify my own emotions and to recognize them properly, and to learn to respond to them properly.

Autistic people have many struggles identifying emotions and sorting them out as it is,
our proprioception/ interoception neurological issues being common to most of us.

I was taught to deny my emotions or to redirect them until my whole idea of self was buried deep in what I hid, and never thought or understood that there were other ways and that other people handled these things differently.

It has taken a very long time and lots of hard work to develop new behaviors and to find new ways of thinking. I am certain that many of us, especially older people who have never considered they might be autistic, grew up with similar training… and with similar results.

Years and years of negative feedback from family, neighbors, schoolmates, co workers, spouse and other contacts in our experience have led to our deep self hatred. How could we get things so wrong? How could we fail over and over to perform as expected? How could we mess things up so badly. It was our fault! We were useless, stupid, worthless. Years of negative feedback is a lot to overcome.

When I learned about my autism, suddenly things began to make sense. No wonder I could not do what they wanted me to! I have neurological struggles which they do not have! They expected me to behave as they do never knowing, any more than I did, that I simply was give a different “tool box” from which to do what they expected of me. So amazing!
No wonder I failed! No wonder I could not work to expectations ! No wonder everything was so hard!

Diagnosis changed everything for me, even though the therapy 38 years ago helped me survive and do better in the world, it was not then that I discovered how much my autistic struggles contributed to the difficulty and distress in so many parts of my life.

Here is my message.

You are worthy of respect. You are worthy of caring, you are worthy of love and friendship.

You are an amazing survivor of so many things that were so hard to understand and so difficult to live through, never knowing about autism and about how it has worked in your life to cause so many struggles that others simply do not have.

There are so many new ways to live and to care for yourself, to assure your needs are met and to give your life a richness and fullness you might never have thought you could have.
Please take the time to explore the options, to feed the needs inside of you for so many things you have been missing all these years. Take time to find self care, self comfort, self accommodation, self interest!

If you struggle with self care, I suggest that you think about a stranger you might come across, who has had a very hard life and is full of hurt and feeling un-cared for and misunderstood.
How would you help that person?
Would you punish, shame and chastise them?
Would you be constantly angry at them when they struggled to do things that were difficult for them?
No, I doubt you would.
Instead you might try to help and encourage them, wouldn’t you?

I hope you can look at the lost stranger inside yourself and be at least as good to them as you would be to any other person .

Autism Tools You Can Use

Ways to help you get through autistic struggles

Chances are you already use a few aids or tools to help you survive and thrive in every day activities. Once I learned about my autism and the ways it works in my interactions with the world, I found things to help me deal with struggles in ways I had not thought of before.

It has taken a couple of years and lots of study and thought to understand my worst autistic struggles. I know my strengths and weaknesses within the spectrum fairly well. I have learned “how to be autistic” from others with more experience, and many have shared what works best for them in many struggles. This is a partial list of tools to use to help you get by every day. By knowing my diagnosis, I learned that I could make my own struggles less by planning ahead and using certain tools in new, very deliberate ways.

Sensory processing issues are at the heart of autism.
Things like sensitivity to light can be helped with dark or colored glasses, light blocking curtains, adjustable blinds, rheostat switches on lights so the brightness can be adjusted.

Using different type light bulbs or different wattage around the house, wearing hats with brims, sunglasses, using a parasol or umbrella, can all help regarding issues with light.
Plan ahead for circumstances you can predict. I keep sunglasses in my car, my pockets, and my back pack for driving, stores and other public places, beaches,etc, and the ones at home are for gardening, taking out the trash, walking the dog… etc etc.. Keeping several pairs of sunglasses handy is new to my knowledge of autism. Before I used sunglasses if I remembered them randomly or when I could find them. I made them easier to use by having many pairs in special places. Today they are a tool I use to make my life more comfortable.

Ear plugs, noise cancelling headphones or listening devices can be used for the person who has auditory struggles and needs to isolate from noise and chaos.
I carry sets of ear plugs in all the places I put my sunglasses. They come in handy everywhere and reduce the stress of areas with lots of background noise, sudden loud noise, ( I watched the 4th of July fireworks this year with ear plugs… best yet experience).

Noise cancelling headphones are great, and some people use audio devices the same way, just plugging in to music and hiding the noises of crowds etc in that way.
I do not do well listening to headphone music etc because for me it adds to confusion and is too much stimulation to my already over stimulated brain in those situations.. it is distracting and or disorienting and for me unsafe to use outside my home or in the car. You might have to experiment with music to see if it hurts or helps in your own struggles.

Proprioception problems can sometimes be helped by wearing certain items such as weighted vests or very tight clothing. If you feel more “wobbly” or fear falling as you get older, you might see if physical therapy could help. Check with you doctor! Certain exercises for balance and motion can be obtained from internet sources of prescribed by physical or occupational therapists. It is probably better to involve a professional because of the chance of not performing the exercises correctly and thereby not getting the benefit of the efforts.

Using a set of walking sticks or other tools may give you more input as to your surroundings.

Using a walking stick or cane will also give a visual cue when you are in a crowded situation, and people tend to notice and give you a bit more room.

Short term memory can be helped by using note pads by every phone, at your desk, in the car and in you pockets or purse.. self reminders with sticky notes can be helpful too. Calendars on the wall or on an electronic device can help. There are devices or apps that can give you an alarm to remind you of events or appointments, and there are devices or apps to help you wake up or remind you to take your pills, remind you to eat, exercise, etc.

Executive function can be helped by planning a schedule using calendar, dry erase boards, chalk boards, felt boards, placed by the door or fridge or other place where you must pass it frequently. Reminders can be posted in each room (make bed, hang up clothes, shut off lights) etc… The biggest problem in using these things is to get into the habit to remember to use them. Now I have trained myself to put everything on our calendar, life is not a scramble to remember appointments, meetings, social engagements, etc etc… it is all there in one place because we remember to put the information in place. “did you remember to put it on the calendar?” is one of the most frequently spoken phrases in our home.

Telephone had been a source of anxiety for years. We solved this by using a phone answering device… today most people have caller ID. We also used “nomorobo’ programs to screen against robot callers and dunning sales calls. Today most people only have cell phones which can be programmed to recognize only certain callers etc.

Knowing my needs and sensitivities now I can think about the things that cause me the most struggles and can take measures to make things easier by planning ahead. I can make special foods to take with me on trips. I can make sure I have my coping tools and things to comfort myself. I can plan ahead to have alternatives if things do not work out the way I thought they would. (important stuff to autistic inflexiblity survival).

I can make sure I have the right drugs in the right amounts and use a pill management arrangement to keep track of when or even IF I took the right meds today.

There are so many things we can use to help us keep our lives sorted and on track. Thinking about what will work best for us may take some time, and will change as our needs change and our lives and situations and abilities change. Take the time to think it over and see if you can apply new ways to help you have more comfort and success every day.

Things such as getting good meals might be helped by buying pre-prepared food. (now you can even order at most groceries and have things delivered without having to ever set foot in the place!) Foods that go from the freezer or deli sections and is microwavable… are easier than cooking and cleanup.. or using one of the many food-at home or meal delivery programs available in many places. This saves preparation time, helps with safety issues (burns, spills, oven left on, etc) and cleanup.

Many alternatives are available for cleaning your home and for struggles with shampoo and bathing, too.. If you do not do these things as well, there are products on the market that can help make these chores easier. Occupational therapy may also help teach you new ways to handle old chores.
Laundry will be easier if it is located on the main floor and stairs avoided especially when carrying things such as laundry baskets so that you are not able to use a hand rail.
Cleaning and home help for personal care and most household chores are sometimes available and can sometimes be prescribed by a doctor if needed.

If you do not need accommodations now, do be thinking about what may be needed in the future and try to prepare for it.

Check out agencies available, insurance coverage, talk to family or friends and ask for input. this may give some insights and also help you judge if there may be help available from them if you ever need it. ( Some people think their children or neighbors or friends will provide for them or take care of them if they need help, only to find out too late that this might not be the case) If you want things a certain way as you age, you are your own best advocate to set things in motion to make those things happen.

I know I may have struggles sorting out emotions or dealing with stressful situations. I have had struggles and depression and anxiety and have needed help with issues in the past, both for myself and loved ones. I know that there is therapy and meds that can help many of these things. If you are constantly hurting emotionally or have difficulty with anger or compulsive behaviors, please do not struggle alone. Reach out and get help. There are so many alternatives, and you are not to blame for your struggles. You can learn new ways to deal with these things. There are choices you can make, there are insights you can find, there are new ways of dealing with terrible situations in the past or present. Professional help is so valuable. You are not alone. Please reach out and seek help for painful past or current situations or disabling social struggles. I don’t regret one moment of the time I spent in therapy years ago. It changed my life for the good and better and improved my life in so many healthy ways!

Occupational therapy and physical therapy are available to help me learn new ways to do physical things which used to be easy in my youth but have become a struggle. If you have struggled with balance, depth perception, odd gaits, inability to do daily household self care or care of your home, occupational therapists can show you new ways to do things. Consulting a neurologist or other specialists can help too, especially if you are dealing with multiple diagnoses. If one professional does not help and has no alternatives, remember that you are entitled to a second opinion or even a third.. You know yourself better than anybody else does. You are worthy of being the best you can be physically, emotionally, and mentally. What can you do to make life better for yourself right now? What plans can you make to have a better future? If you can’t find a way by yourself, please reach out to others. There is help available. Make sure you get the help you need.

Self Care

Might be more to it than you think!

One topic that comes up frequently on the autistic groups I attend is self care.
This is usually mentioned when people are feeling stressed or have had a meltdown.
Self care is usually mentioned as something one does at the moment of distress or trouble. Things like retreating to a darkened quiet room, putting on headphones, taking a long hot bath (with bubbles!), or self comforting in other small ways.

I want to change the concept of “self care” as immediate first aid applied in generous doses to urgent situations. I believe self care, if applied correctly, goes much deeper.

“Self care” can be described as everything one does to assure one’s own health and welfare. It is not just a band-aid, quick fix box of self comforting behaviors for bad days. True self care is in seeing oneself as an entire person and taking care of ourselves, all the time, not just in emergency situations.
Many of us struggle through daily living to the extent that we might never have given thought to the future. We are busy working from stressful event to stressful event and have not stopped to think that we can make choices to change things for the better. We do not have to take on that new project. We do not have to do that dreaded social event. We do not have to jump through hoops to please others, say yes when we would rather say no. We do not have to dress in certain ways. We do not have to go to places we dread. We have alternatives! We can build lives for ourselves and take our autistic struggles and strengths into account as we build lives with less stress, better health, more convenience, fewer challenges to our sensory sensitivities, and a better future for ourselves and those we care about.
Self care is about making your own autistic accommodations. It is about planning for a healthy future. It is about doing things differently to bring about better results.

Examples of self care include thinking through your personal needs and making sure you provide opportunities to assure those needs are met.

Examples of self care: Make a schedule and stick to it, make sure you have a safe home with hand rails, plenty of space to move, less clutter, ease of access to do cleaning and laundry, and other household work. Plan for better health care, diet and exercise. Plan ahead for old age and struggles with things that might be easy now. Why wait? You can take control of so many every day issues and challenges and figure out ways to make life better for yourself.

Self care is having a list of emergency contacts, a will and a power of attorney, A person who will take on the responsibility of your care decisions if you are not able to at some point ( power of attorney for health care).

Self care is refusing to live in a filthy home, have a dirty body, or stinky clothing. There are so many ways these issues can be handled. There are so many alternatives available besides tolerating these issues because of sensory struggles or administrative dysfunctions.

Self care is refusing to take on yet another set of responsibilities because you are already stressed to the max. It is saying NO when asked to do yet another thing because you have always said yes in the past. It is taking time to recognize your strengths and weaknesses and building ways to make sure you do not harm yourself or others through making poor choices or ignoring your needs for rest, safety, or health care.

Self care is making sure you get exercise, have a healthy diet, and regular medical and dental care. Self care is thinking ahead and building a plan to make sure these things are done.
Self care is learning about yourself and what you need to stay healthy, and setting aside time for yourself instead of rushing to please others and serve their demands. It is knowing oneself and knowing what you might need help with, and what you are best at. I did not even begin to think about these things until I learned of my autism. I was busy rushing around trying to please and help others regardless of how extreme the demands on my own emotions or health. I was busy trying to appease others and to keep others from getting angry with me by any slight disagreement over even the smallest things. I had no idea how my own behavior was making my problems so much worse! I never thought about it at all, believing that all the stress and pain were simply part of life and not knowing I had deep struggles that others did not. Is this true for you today?

Self care is not selfish. It is healthy to make sure we have our basic needs taken care of, and that we build a life for ourselves which takes into account our need for perhaps unusual accommodations for our unique struggles and strengths. Most of us have heard the explanation of the “spoon theory”. It is true that if we use everything inside of us and do not replenish and provide for ways to be rested, refreshed, and renewed, that it will take us much longer to recover or to be successful at things we want to try.

Self care is an entire system of living, which you must think through and design for yourself, ( often with the help and cooperation of others) that makes sure you get what you need to survive and even thrive. One of my several often- used sayings is “self care always first”. Self care is important to your health and sanity, and to your having a better life both now and in the future. Do you have a plan for long term self care? It is not just self comfort after a crisis, it is a way of life! If the thought of making a self care plan is overwhelming, there are many ways to get help from others. Think about it and reach out if you don’t want to do it alone.