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!
Tag: autism adult diagnosis
After diagnosis
What next?
What happens when older adults are diagnosed with autism? Are there supports or therapies
which can explain this surprising diagnosis and help us understand our new autistic selves?
How will life be different? What do we need to help ourselves transition to this new definition
of ourselves?
Recent discussions in some forums I check out each morning have given some great insights
and not all of them are good.
On the question asking how knowing our autistic diagnosis has helped us, the great majority responded by saying it has not!
I must say this surprised me, considering how much better I feel I am doing now I know myself better and now I better understand my struggles.
For the majority giving answers, simply understanding how one struggles and why has not been enough. Those struggles still exist, even though they have been given a name (autism).
Most respondents said they needed more help. The great majority wished for available therapy to help them adjust to the new information and understand how to cope with the changes this brings.
Many said they could not break down the information of knowing their struggles to understand how to make adjustments and accommodations for themselves; they sought insights but struggled to find those new coping mechanisms on their own.
Many thought they could use another person to help in day- to-day functioning, actions requiring “executive functioning” struggles were the ones mostly named: household tasks such as cleaning and laundry, self care including bathing and other hygiene issues, food preparation and shopping, bill payments and financial struggles were all mentioned.
Finding affordable housing, and transportation issues were also discussed, as well as seeking persons to advocate for them in many transactions, medical, legal, etc. and for helping with filling forms, making applications, finding the services needed. Many services may be available, but finding out about them and applying for them seems insurmountable in difficulty. Even learning of local connections who might help is difficult at best.
Many wanted training in job skills, specialized education, and help finding jobs, perhaps getting accommodations for some sensory or other issues they were dealing with.
Some of these services can be provided through the state level insurance mandates in the United States that now say adult diagnosis and therapies/treatments must be covered (medicare too).
Others may be accessible without the word “autism” ever being raised. Locations where individual help is available vary considerably from place to place, so there is no general outline to tell us which steps to take to get what sort of help.
Getting ourselves connected to the networks used by other groups is complicated and for those who struggle with social issues, can be overwhelming/terrifying.
The forums I attend are international. In other countries there may be nothing at all to address autism . In some there may be agencies where one applies first. Here in the USA we ( autistic elders) are lost and on our own for the most part. Raising awareness is the first step.
OldLady With Autism 