Tag: older adult autistic

Missed Diagnosis of Autism

Misdiagnosis of “something else”

Diagnosis of autism in older adults is becoming statistically more frequent, but many of us have garnered multiple other diagnoses by the time our autism is recognized. I have read articles repeatedly that discuss how there is such a high frequency of mental health diagnoses among older autistic adults. I have read studies, I have read on multiple forums and discussion pages how individuals have been given drugs, shock treatment, years of psychotherapy or counseling, all to no avail. For many of those late diagnosed individuals uncovering their “hidden” autism was the key to better mental health and self understanding.

I was given 5 “diagnoses” by one professional neuro psychologist early on in my search for diagnosis. I learned after the testing sessions (expensive sessions over 2 days which required travel and an over night motel stay) that this person had NEVER diagnosed a single person with autism. He had to give me diagnosis of 5 other mental conditions to explain my test results and answer my questions. I already had 2 diagnoses from other professionals, anxiety and depression. I took those test results with me to the very experienced autism specialist ( who had diagnosed many adults with autism and worked with them afterward, yes I asked! ) He pointed out that my very irregular test results, with super high performance in some tests and super low results in others showed very clearly my uneven neurological development (autism)
The first professional had simply no familiarity with autism so applied symptoms he was familiar with to come up with diagnoses that explained my test results. He could not see the autism because he had no training besides his initial schooling in 1970 , when autism was not clearly understood or well defined except in extreme examples and was known as infantile schizophrenia.

This points out that many of us may find that our diagnoses are noted to be “atypical” , since we don’t fit the classic description of our diagnosis but its to the best knowledge of the professional that gave us the diagnosis “atypical bipolar” “atypical schizoid personality disorder” “atypical borderline personality disorder” etc. If you have “atypical” diagnoses, and have been through multiple failed attempts to treat the diagnosed condition, consider that instead you may be autistic. I am still anxious and sometimes depressive, but even the depression has lifted greatly now that I know I am autistic and can make adjustments to my life to help remove stress and avoid the most difficult of my autistic struggles.

Being autistic and not knowing it, I learned a lot of unhealthy coping mechanisms early in my life. I am a survivor, but I needed help (therapy) to explain how I could make choices in my life and how I could make healthier choices.

I had to have somebody teach me that I had alternatives, how to set boundaries, how to say NO and how to enforce my choices with healthier responses than those I had used in the past. It took some coaching and some practice, but life is its best ever. If you are struggling with seemingly untreatable diagnoses, if you are in constant emotional pain, if you can not find relief in your current situation, it is time to start asking yourself what needs to be changed, whether it is to seek diagnosis for autism, to seek therapy or finding a “life coach” to help you see other alternatives, I hope you find what you need.

But first you have to be able to see that there might be healing answers you never dreamed of.
Don’t be afraid to reach out and to keep trying until you find the answers. Life does not have to be continual emotional pain and misery. You deserve happiness and peace.


Adult Autistic reaching out

Self Advocacy, Ageing on the Spectrum


Advocate as noun: Person who publicly supports or recommends, or stands up for ( an idea, a person, group of people, certain ideas or beliefs)

Advocate as a verb: To publicly recommend, or support, promote, advise in favor of, stand up for or endorse ( an idea, a person, a group of people, certain ideas or beliefs)

Standing up for oneself , actively representing one’s own interests, welfare, health, well being,

Speaking for oneself of one’s needs, one’s beliefs, one’s best interests is Self Advocacy.

At my age, 6 months away from age 69 years old, I have finally become a self advocate.
Self advocacy has been one of my hardest struggles in life.
I had nobody to recognize my autistic struggles, nobody interested in helping me through my struggles as a child, nobody to speak for me in any situations I found overwhelming, frightening, distressing, or difficult in any of the very many ways I struggled.
I had been trained to be compliant in everything. Wait for directions, wait for permission, wait for somebody to notice my needs or wants.
Don’t bother people, don’t ask for things, don’t be a pain! Don’t talk to me, don’t tell me, don’t say that, I don’t want to hear that from you.

So many of us who grew up this way are simply not prepared to stand up for ourselves and ask for help with our problems.

One of the issues that comes up repeatedly on the adult autism online forums I participate in is how to overcome obstacles in our lives, from speaking out about being abused and asking for help to get safely to a new situation, about stopping bullying, about being blamed, shamed, or victimized in various interactions, including medical situations and needing adjustments or explanations made in health care situations.


One of the many problems repeated over and over are problems with misdiagnosis when people turn to professionals for help in understanding their struggles.
So many of us who seek diagnosis are handed misdiagnosis and scoffed at by those in power for thinking we might be autistic, usually then being told that we don’t fit diagnostic criteria from ages ago, with no current understanding of autism facts that have been learned in the intervening years since the days of the Doctor’s/ professional’s medical training.
One of the struggles we have in obtaining diagnosis is the sheer lack of numbers of autistic people applying for diagnosis.
If a doctor has 2 percent or less of his practice involved in the population they(he/she) sees, how much time will be spent trying to stay abreast of the most recent research and information for those issues? I base the 2 percent of population quote on the current basis of understanding of the frequency of autism in the overall population. Most of the people seeking diagnosis will be better informed than their consulting specialists unless the person we are seeing is an autism specialist.

In so many of our struggles, we know what is best for us, what works for us, what is wrong for us, yet we are somehow afraid to speak up and speak out.
I was afraid of aggression and anger from others, afraid to draw attention to myself, afraid to speak up about things that were wrong or distressing to me. I was convinced nobody cared. I was right.

Nobody does care about you like you do! Unless you speak out on your own behalf, nobody is likely to understand what it is that is troubling you, whether domestic abuse, workplace bullying, medical issues regarding your care, medications, treatment, clarifying instructions you get or attempting to get professional diagnosis.

I have several things that do not work in my favor. I have no social status, I am elderly, I am not physically appealing/attractive, I am a woman, and I am not wealthy.
I do have the advantage of previous training for diagnostic battles. Our now adult daughter struggled from an early age with many things that made life painful and dangerous for her. I got my experience on the medical battlefield when she was young, as an advocate for her diagnosis and treatment, being forced to learn all the ins and outs of insurance, government requirements and definitions of disability, researching diagnoses, finding the right treatments, understanding therapies and medications, etc etc etc.
Mother love was a great force in helping me overcome my own struggles and in learning to speak out for things that were not right for her.

Have you given thought to self love?
Our daughter was worth of fighting for, of seeking treatment for, of my learning about her struggles, learning the required rules and regulations from the government at state and national levels and diagnoses involved, how to apply for help, where to go, who to see, and my learning about medications and help that might be available. I was highly motivated.
Our daughter was/is worthy of continuing to fight for when she had given up. When she was discouraged, when she was overwhelmed, when she was in her darkest times. There has been no question of that!
Would you fight for somebody you cared about?
I think almost all of us would.
Then consider being a self advocate and standing up for yourself when you need to.
I did not think I was worthy. I still don’t want a fuss.

I still am afraid to bother anybody, still am worried about what others will say or do if I speak up. I am timid, I don’t want to annoy or anger or be the focus of negative attention that one draws if one opposes authority in the form of the doctor, the teacher, the boss, the spouse, the family… there is a huge list of people it feels unsafe to speak up to about any subject. My social conditioning is that deep it is a struggle every day to remember it is OK to ask for support, for help, for explanations, for adjustments, for changes, for things I need.

I am also learning that my life can be so much better if I ask for accommodations, if I ask questions about directions, diagnoses, treatments recommended, or even protest or contest certain proposed actions supposedly to be done on my behalf.
I am worthy of self care, I am worthy of respect, I am worthy of being heard, I am worthy of making decisions of what is right for me and speaking up on my own behalf. I had to learn this and fight to overcome my deepest beliefs about myself and my own value.

If the “professionals” you are interacting with dismiss your fears, pooh-pooh your questions, patronize you, demean you, treat you with contempt, or ignore your concerns, please report their attitudes and actions to their superiors and try to find others who will respect you and make you a partner in your own care and other interests.
You are worthy.


I am learning how to be an advocate for older adult autistic people and to educate and to encourage and to speak up whenever I have the opportunity.

First I had to learn how to love myself enough to feel worthy to speak up for myself.

More on self love soon.