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.