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?

10 thoughts on “Advocating for Late Diagnosis of Autism

  1. Professionals who object to late diagnosis overlook the simple fact that if you know you are on the spectrum you can better learn to handle the things that have plagued your life. If you are of average or higher intelligence, you can work things out for yourself. Diagnosis is a tool that can lead to self-knowledge, not necessarily a prelude to asking for support from the system.

    Great post on a topic I doubt many give any thought to.

    Liked by 4 people

  2. Follow the money, I always say… It will show you the true colors of the holder.
    Your post made me angry 😡 Not at you, of course, but what you shared.
    I work with the elderly, as I feel they are forgotten in this world. Everyone is so focused on kids.
    I was diagnosed with ADHD at 50. It helped a lot to know what was wrong with me.
    I don’t understand how scientists running studies can’t ‘use’ an older person that’s been undiagnosed as a control subject of some sort.
    There has got to be good info to be gotten from someone who hasn’t been treated all their lives.

    Liked by 6 people

  3. You sound like a truly wonderful, caring, intelligent woman and I thank you from the bottom of my heart for your writing–which I’ve just now discovered. I’m nearly 70 and it was less than three weeks ago I stumbled on an article or youtube talk–I don’t remember what it was–and had a blinding flash of recognition that I’m autistic! The relief was palpable and I’ve been eating up all the data I can find that’s relevant to my situation and experiences. I’m trying to discover and communicate with other older women autistics now. I want COMMUNITY and better understanding. It’s such a joy to know I have a tribe “out there”!!!

    Liked by 4 people

    1. Welcome to the autistic family! The huge relief in finally knowing and understanding with my own diagnosis is why I have become an advocate for autism diagnosis of older adults. For me too, it has been so wonderful to find I am not alone. I just started a facebook page for conversations about ageing and autism. It is called autisticelders , meant for those of us over 55 who want to share information and ask questions about autism. There are only a few of us right now, but slowly growing in numbers!

      Liked by 2 people

    2. Kate, I don’t know where you’re located, but in the US, I found that AANE has groups for women, and people over 50 who are on the spectrum, many with a late diagnosis. I also found YouTube videos by Sarah Hendrickx to be immensely helpful: her videos are what led me to the realization that I am on the spectrum as well.

      Liked by 1 person

  4. Great point! I found out that having a diagnosis was, ultimately, a good thing. I now understand more clearly why I am the way I am. I hope others will benefit from a proper diagnosis. As for NTs that have issues with diagnosis, Too Bad.

    Liked by 2 people

  5. I felt a stab of upset at the thought of countless autistic elderly people suffering with no understanding (by themselves or others) of their condition – something I’m sorry to say I had never considered. If nothing else I shall at least determine to be one of those pebbles you mentioned that sends out a few ripples into the world on this important subject.

    Liked by 2 people

  6. I was diagnosed in my mid 40s following issues at work resulting in my resignation. It was a relief to know the source of my struggles. I was happy to declare it where I work now and get support

    Liked by 2 people

  7. One more reason why adults with autism benefit from a diagnosis or at least more knowledge– besides relief, community and opportunities to learn other ways of dealing with their struggles. It helps others to react with some understanding and compassion! The first time I ever heard about autism, it instantly changed my relationship with someone dear to me. “Oh, she thinks differently, I need to make allowances and see things from her point of view.” The benefits of knowledge do spread like ripples — even without a diagnosis.

    Liked by 1 person

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