Tag: Autistic self care

Reaction to Diagnosis

I don’t know if it is the same at any age

I have not looked at any studies, but I participate in several autism based groups online. Ideas stated here have for the most part been formed on my own experience with encountering autism, and reported experiences from adults in online groups I belong to.
Each person’s experiences and perceptions will of course be different.

I think it might be a bit more difficult to shift gears as we age. Autism is known to cause rigid thinking. We older autistic folk have had plenty of practice at forming rigid ideas by the time we reach our 60’s.
Is late diagnosis of autism more shocking to those of us who are elderly? I suspect that it is.

As older adults, we have overcome or adapted to many struggles alone.
We have spent a lifetime believing we are “normal” but also believing we are somehow different, incompetent, selfish, bad, wrong, stupid, useless, thoughtless, inept, uncaring, rude, intrusive, hateful, and on and on… a litany of fixed ideas in our older and less flexible brains, learned in our earlier life and more or less accepted as inner truths because we did not know about autism. We have set ideas about ourselves and others and how the world as we see it works.

We may have wondered why we struggled, but learning at last,( although it is sometimes a relief), that autism is the answer, we may suddenly find ourselves scrambling to find a new platform to view our innermost selves.

It is as if the ground we have stood upon for so many years is crumbling.

The foundations of the house we built our ideas on is being torn down.

We will need time to replace these with ideas about our selves and how our diagnosis of autism makes everything different.

Many older people report feeling shocked at first, even though they knew, deep inside that somehow they were ‘different’.
Knowing about autism changes all of the concepts and precepts we may have held about ourselves and our world.
Knowing that we have been wrong in the way we understood almost everything in our worlds, well, that is a lot to digest!


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Let me insert a warning here. Your autism is hugely important to you, but it will be of little consequence to most all of the people around you. They will be likely to react by passing off the information of your self discovery lightly, and assuring you that they still love you etc. .
They will be likely to make ignorant statements about “everybody being a bit autistic” or they will deny it… never mind, don’t argue. Don’t take these things personally. Your diagnosis will mean the world to you, but as in all things, most people will not be able to understand and since it doesn’t affect them personally, most will simply not be very interested. That’s OK. It does not mean they do not care about you, they simply don’t see the significance of your discovery. But they will see the results as you work though your new understanding of your self!


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Learning about our autism is a shock in the way that a sudden loss is… but this is loss of self identity.

Most people newly diagnosed with autism report going through the stages of grief. Shock, denial, bargaining,sadness, anger, acceptance. All appear and disappear, in any order, in rapid transition or slowly over days and sometimes years.
Do not be surprised at your emotional responses to finally learning you are “on the spectrum”.

My major reaction on figuring out I have autism/am autistic was relief. I knew there was something different about me, but had not a clue as to the nature of my struggles or why I seemed to have so many difficulties with things that others seemed to find easy.
I have been grieving in an ongoing way for years, but now I have an answer for that too. I have been sad for the loss of opportunities and things that ‘might have been’. I have regretted so many incidents of the past where I made bad decisions, misunderstood motives, misjudged so many people or situations. I have been angry over many of those things too. Nobody knew!
Feeling cheated of an ordinary life (whatever that is!) and wishing I had known or simply not been given autism as my share in life, feeling extraordinary relief and curiosity on learning how I was different and why… all going round and round inside me.
I bet you will feel similar things and a whole range of emotional turmoil. It is like being engulfed and having to learn to swim. Not a piddly little word, but one with great meaning and consequences “autism”.


Newly diagnosed with autism means loads of emotional homework, lots of looking for new ways to interact with one’s world, and new understanding of so many painful things from the past.
Please give yourself time to process all the new information, the new ways of looking at life and others, the new things you learn about yourself.
It took a lifetime to learn all the ideas that now are being shaken and tested from new perspectives.

Many new ideas will take the place of some old “stinkin’ thinkin’ “. , Many old ideas will be discarded, pains will be dug up and revisited from new perspectives.
I like to say I am a work in progress. My growth in understanding of my world, my self, and everything that applies to these things has been phenomenal. It has been the most exciting thing, freeing, uplifting, a sort of fresh start in a new and better world, to learn of my autism and to learn how to live better through my better understanding of how autism has touched every part of my world for the previous 65 years before I knew, before I began to understand so many answers I found when I found out about autism.


It is my deep hope that the medical community and those learning about autism to apply to professional practices today will be able to help not only children and families dealing with autism, but will be able to diagnose and explain their autism to old people just like me, but who remain still undiscovered and struggling with their Autism without knowing.

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.