Advocating for Late Diagnosis of Autism

Maybe this is going to be a rant?

I have sought out any and all information I can find about being old and autistic at the same time.

Last year I read a 2015 book advocating for medical and support professions to get ready for old autistic people entering the system. Autistic people will be needing more support as we age. Much suffering and distress can be avoided by teaching doctors, therapists, and support staff about autism and how it affects a potential subject in care for any or many reasons. Autism masks symptoms, causes diagnostic and care struggles, can be misinterpreted as many other things to the detriment of the person being diagnosed or treated, and the extreme difficulty( sometimes) of the staff serving that autistic person. The entire “baby boom” generation will be over 65 by 2030 and many have not been diagnosed with autism, diagnosis as we know it today simply was not available when we grew up.
Each chapter was written by a different author. I was shocked to read the chapter by a diagnosing psychologist complaining about all the old people coming to him for diagnosis. They were getting along for all these years, what could diagnosis do now? He seemed to be of the opinion that nobody could possibly want such a label and that people in pursuit of diagnosis wanted to get on the dole or somehow cheat or work the system.
I was shocked, especially since I thought the book was about finding and diagnosing the elderly, and supporting older autistics.

I decided the man was not capable of seeing or understanding all of the personal benefits (not monetary) to finally knowing and being reassured that yes, I have different neurology, and all my past failures were not my fault, was good enough.
Evidently he thought we had made it this far, we did not need to bother him with requests. HE was the professional, how dare we self diagnose and seek confirmation.
I got the idea that (like the neurologist I consulted for diagnosis) he was willing to ‘teach us a lesson’ by denying we are autistic, only he, the great and mighty “professionally trained ( most of them in 1980 and many earlier when autism symptoms were barely recognized and contained at most a half chapter in their text books) could possibly give a valid diagnosis. The anger and frustration was palpable.

That particular chapter brought back a lot of distress from my first attempt at professional diagnosis when the doctor deliberately destroyed me emotionally and mocked me and gave me multiple serious psychiatric diagnoses which subsequent diagnosis by a psychologist with 40 years of experience removed from my record, explaining that all my neurological tests did indeed show autism, the neurologist simply did not know much about autism as we know it today. How many of us are going through this? How many have been given spiteful or ignorant diagnoses … its that old complaint about being a square peg being pounded into a round hole.
My diagnosing psychologist said ” to a hammer, everything looks like a nail”. If you don’t recognize autism through training and experience, you tend to give other diagnoses you are more familiar with and which partially fit what you might already be familiar with. OK.

That was incident one and two… I am learning there are many out there who are actually against adults seeking diagnosis. I am learning that many “autism advocates” and even more autism researchers see diagnosing adults as a waste of time.
Many autism advocates believe adults are a finished product and there is nothing that can help them, no reason why we should waste research dollars or any other time and effort on adults. We are already “in the system”.

Some in institutions or care facilities, some at home with ageing parents who might also be autistic and not know that. Some of us are living in group homes, some of us are trying to get on with our every day struggles, wondering why we seem to be such miserable failures where so many experience success, and wondering why, why ,why we can’t accomplish what seems to be so easy for others. Many of us are on the streets with substance abuse problems, many are in jail, many are just barely surviving when, learning of our autism, might instead be thriving.

Yesterday I read a blog I follow, opening the page with interest. I have followed this teaching and researching professional and found his perspective on autism always interesting and liked the analytical way he addressed many issues. I didn’t like this blog topic!

In his blog the professional teacher/researcher pushed his belief that it was a waste to include older autistics in research, in advocacy, in diagnosis, or in finding ways to make our lives better.
He said the funding for autism could not bear the strain and that older adults could not benefit, should not benefit… all should focus on autism in children.

I am not advocating taking anything away from children. I am not wishing in any way to stop funding for this fellow’s own research ,(which I suspect is the primary reason for his blog post, he is feeling threatened in his pocketbook regarding his own work).
I don’t know a thing in personal experience about the struggles for funding, but I do understand that for those who seek , finding funding is hard fought and there is never enough money for researchers in almost any field.
I am seeing the newly formed autism groups fighting amongst themselves for newly available government dollars and suspect there lies “cause” and effects. Follow the money! Who benefits?

I don’t know how to seek out funding, I am a one person campaign, and I am only one person writing a blog and hoping to give talks, run a Facebook Forum or two to give insights into what I am learning about my own autism and that of others. I truly believe knowing ones autism diagnosis can be life changing. I wish for others, the peace of mind and better life that I got when I finally understood about my own autism.

I am no threat, I am simply trying to understand and to learn new ways to live my life of struggles and hoping to help others do the same. I profit financially in no way and any activities I participate in are funded only by me. ( just to make this perfectly clear)

Maybe more individual people raising their voices and sharing information, agendas, thoughts, and ideas will add value to society in ways that need no big government funding .
( consider planting thoughts as seeds in minds everywhere if you are up to it!)
Ripple effect from hundreds of small pebbles thrown into the pond can spread as well as one big rock… maybe better.
I don’t want to be anybody’s enemy.
I want others like me , who spent my first 65 years never knowing why I was such a miserable failure, why I could not do so many things with even a moderate bit of success, why I struggled to have a social life, why I could not communicate with others without making them angry….
I needed desperately to learn about the fact that I was/am autistic. Knowing has made all the difference.
Surely older people deserve insight and peace of mind?
Surely there is room for new voices from another aspect of autism to be considered and entered . Surely we are on the same side as autism advocates???
Or are we?

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!

Asking for a referral, social anxiety, why I prefer my own company.

I am planning to make another attempt at “official diagnosis”

Due to problems with communication and my GP’s short, abrupt, impatient treatment of my questions, and incidents of her scornfully yelling at me in the past, I had avoided the idea of asking for a referral, or trying to explain to her why I believe I am autistic.
I had searched both my insurance network and the network of health care providers she works for, and none of them had any specialists in autism, not even for children.

I considered asking for a referral from the GP an unnecessary, dead end approach to diagnosis. I did not bother asking her, because I knew from my research on Doctors available in her extensive statewide medical system that none were providers with any interest in autism.

Now I have found a Hospital in another state, 9 hours drive away, which has a department devoted exclusively to diagnosis and care of autistic adults. The doctor in charge of the clinic is an author whose books I have read. It seems she does indeed understand autism in adults. In order to see her, or to be considered for diagnostic testing and interviews, I must have a referral from another doctor.

I dread going for my yearly scolding/wellness check so am already beginning to fret.

A thousand “what if” questions run through my head. I feel as if I have to be prepared for any eventuality and of course I am not able to do that. Feeling incompetent to deal with a given situation is a BIG trigger for anxiety in me.

Most social situations (dealing with any other humans and trying to interact with them on any level is something I consider a social situation) cause great anxiety because I fear I am not competent to deal with whatever may happen. Let me re-phrase that, I know I am not competent to deal with most situations that may arise. Life long experience has taught me that. I am much better at age 67 than I was in my first 30 years, but by comparison with most NT persons, I still find I fail quite frequently.

Most anxiety for me is because I feel that I will not be able to deal with whatever situation I am facing in a competent manner, without making a fool of myself or annoying or angering somebody.
So many life experiences in the past have proved these fears are founded in truth.
As an older adult I no longer fear physical harm from most situations, but I dread anger, argument, aggression, criticism, scorn and rejection. I am simply afraid to subject myself to situations where these dynamics come into play, leaving me emotionally hurt and helpless to defend myself.
With life experiences of this sort of thing happening in interactions with others, is it any wonder I am anxious?

It is not that I don’t want to interact with other people, it is more that I seem unable to do so without causing anger, scorn, or other negative treatment from others.
I prefer not to ‘socialize’ – that is interact with others regardless of whether it is in an informal or a service or professional setting, because the negative experience has been the most common in my life, and why indeed would I seek that out?

BUT: Is that not what the goal of seeking diagnosis is all about?
I wish to interact with persons to tell them about autism in elderly people. One by one I am facing my fears, the message is important.
I hope to help others understand how autism has affected their own lives, and mean time I continue to try to find a way to overcome the way it affects me as well.