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.



More tools we can use

Making our own accommodations and finding help

As an older adult, it is very difficult to find support that is available to children and minors. Most insurance does not support specialized autism therapies for adults. But there may be ways of gaining support using therapies and systems already in place.

I think it is very important to know yourself and know your own struggles, strengths and weaknesses. If you have had a neurological study done, you will have some information about what you do best at, and what is hardest for you. I had never given this a thought.

It is amazing to me that so many autistic people have no concept of themselves. They have been so busy trying to survive and mask, interact with their demanding worlds, that they do not understand what motivates them, their emotions, how they see the world, their own thoughts and feelings and beliefs are often shoved to the background as not being essential to whatever struggle is of the moment. The majority do not seem to have any understanding at all about how others might see them. ( I surely did not!).
Many autistic folk don’t see the areas of life they struggle the most with, and usually do not understand why that particular thing is so difficult. Mostly we do know the frustration of not performing as we (or others) think we ‘should’ and we deal with residual guilt and self doubt because of those hidden struggles.

I had been so busy working and taking care of every day struggles I had never really thought about inner things. I did not understand the way I got through my days. What skills I used, what I believed about myself. I did not have a definite understanding of “who I was” or “what I wanted” in anything but the most shallow and immediate way as it depended on responses to every day situations. I have since had time and motivation to think about all of that. I can’t tell you how much it helps to know and value yourself enough to work to really understand the “inner you”.

Things to think about:

What things do I love to do best, and what is it that I like most about them?

What skills do I have that I perform well and confidently?

What skills do I struggle with, hate to be called on to use, fills me with a sense of struggle or failure?

When do I feel the happiest, most satisfied, most at peace?

How do I deal with sorrow, fears, disappointment, emotional pain? Do I need to learn healthier ways to respond?
Do I need to learn to recognize my feelings and express my feelings or learn to react to my feelings in healthier ways ?

Do I struggle with physical things? If so, what causes the most trouble for me?

Do I have anxiety or depression?

Do I have troubling responses to sensory and or emotional overload?

What struggles bother me the most, and do I need or want to learn new ways to deal with them?

Once we see our strengths and weaknesses and truly understand our struggles, we can begin to find ways to ease the struggles.

Accommodations for sensory overload, for example can be found in doing things in new ways. ( replacing bright flickering lights in the home with soft light, using rheostat switches to adjust brightness or dimness, for example) The list is endless of things we can do to help ourselves every day . But first we have to recognize the struggle and the needs.

We may not be able to access “autism therapy” but we can find professional specialists to help us with our social, emotional and our physical struggles.

There are occupational and physical therapists to help us with our gait or our coordination and our sensory struggles.
There are specialists in communication struggles to help us with speech, language, and other communication needs.
There are behavioral therapists who do not need to know you are autistic in order to help you overcome difficult behaviors, fears, anxiety, trauma, emotional recognition and self expression.

You can learn new ways to do things without your teacher/therapist knowing every detail about autism. I have found that many therapists are interested and open to learning more . The ones who listen instead of just tell you what you are or do or feel are the ones who will probably be most successful to work with. You may have to interview or try several before you find one you feel you can trust and who will work to understand and help you, but the things you can learn with a therapist as a coach or teacher for your life struggles will be worth the extra effort.

Insurance often can and will cover a certain number of visits to these specialists. Autism may contribute to your struggles, but your struggles may be better covered in the medical system (at least in the USA) through addressing the individual struggles and finding ways to work within the system which is already in place. (therapy for ptsd, therapy for trouble with walking, therapy for depression, etc rather than addressing autism directly)

Support groups and group therapies can also be helpful for social issues, as well as any special support groups for single issues such as epilepsy, various syndromes often associated with autism, etc… and in some large cities there are even autism support or social groups.

Adjusting to diagnosis and learning all the ways autism can affect us takes a lot of time. Please be patient with yourself and know you are not alone. It is a huge change to look at autism from the side of finally knowing. But knowing our diagnosis is autism, we can finally grow, understand, and take action for ourselves to make or lives better.
Take your time, explore, and realize that things will not change overnight, but gradually. 3 years in, and my life keeps getting better. The struggles are the same, but I am finding new ways to do things, and finding new understanding almost every day. 65 years of not knowing and adaptive changes I made in my life to survive will not be understood or un-done in a short while. It is an ongoing process. You are worthy of understanding, knowing, learning and you are worthy of the best life you can make for yourself .
Knowing will make all the difference!

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.