How to Seek Diagnosis

Common question with multiple answers


It has been almost 2 years since my formal professional diagnosis. Since that time I have read countless blogs and participated in multiple forums for autistic people of all sorts.

One of the most commonly asked questions is “how do I seek diagnosis”?

Unfortunately, there are very few competent diagnosing professionals for adults with autism, or suspecting autism. Information about autism is being updated almost daily and many professionals fail to keep up with changing ideas and thoughts about autism.
It is still very common for an adult seeking diagnosis to be told it is impossible for them to be autistic because they are in a relationship,married, have children, make eye contact, hold a job, or live independently. Many diagnosing professionals believe that autistic people do none of those things.

Many adults seeking diagnosis are turned away with the diagnosing professional saying it is too late anyways, “you are already living your life and what good would it do to get diagnosis now”?? “there is nothing we can do for you now”

Those seeking diagnostic services as adults need to be aware that it is possible, even common to encounter rejection, mockery and ridicule, misdiagnosis, and misdirected “treatment” with both drugs and recommended “therapies”.

How do I find a competent diagnosing professional?
Here are a few strategies gleaned from much discussion with others over the period of time since I was finally able to obtain my own diagnosis.

Be prepared to travel long distances, pay out of pocket, and recognize that it may take a very long time.

Many insurance companies will not support “testing for autism” but will support psychological or neuro-psychological testing in general.

Check to see if your insurance covers psychological testing. Part of the testing process may be covered by insurance, medicare, or supplemental insurance, but it is likely to require co payment of some sort. If money is an issue (and for most people it is a big one!) check out the coverage you might have first. Ask if they will accept client (you) claim submission for out of pocket payments using “out of network” psychologists.


While you are talking to the Insurance company ask them if they can recommend psychologists or neuro- psychologists who accept their plans.


Do you know others in your area who have obtained diagnosis as an adult? Is there an autism group, support group, or other autism (therapy, social, etc) group in your area? You may find diagnosis by asking these groups for recommendations or referrals. Even if the group is for children or minors, many of those parents may also be autistic or have obtained diagnosis. Most will be glad to share the name of their diagnosing professional.

You may be told by insurance to visit your GP for a referral. Many GPs may know somebody in their professional circles or within the group they practice in. Many will not .

Finding diagnosis can be a struggle of its own, things are gradually getting better, but for most of us who missed diagnosis in the 80’s and earlier, we can expect to have to be persistent and diligent in our search and to rely on patience and self care to see us through.

If personal contacts do not bring forth names of professionals willing to work with you, you can ask in forums and pages on the internet.

There are lists in some internet groups depending on location, which have contact information for diagnosing professionals.

Cities with high population, teaching hospitals, and medical colleges will be more likely to contain a professional who is experienced in screening adults for autism.

There are individuals who are willing to do diagnosis today online or on the telephone using webcams and other technology. Covid has made this possible and can be a blessing for some, but be aware that if you are seeking disability or legal accommodations in the USA you will likely need to present documentation from a USA doctor and it will have to be part of your medical records.
Internet medicine and related practices is full of fraud and if you can not ascertain an established practice with a physical address, phone, email and other contact information, or if you can not find documentation from the state (Doctors and businesses must register and be certified or licensed by the states where they practice, and those documents are public record) then do not proceed!
Verify credentials and any internet information using at least 2 other sources. In eagerness for diagnosis, don’t be duped by slick imposters and tricksters.

Locating possible professionals is only the beginning!

Calling or emailing for information comes next.

1. Express interest in obtaining testing because you suspect you may be autistic.

2. Ask if the professional sees adults, older adults, women/or other descriptions of your self identity

3. Ask how many autistic diagnoses the professional has made. How many women, etc?

4. Depending on the answers, ask for the professional to phone you regarding your interest in being diagnosed. If the professional does not call you back and you are pressed to make an appointment, do not proceed.

5. When the professional phones you, ask the questions 1 through 3 in person, and see if you get the same answers.

Do you communicate easily with the professional? Do they answer your questions and ask questions of their own? Proceed to make an appointment to meet and talk in person about the diagnostic process.

Do you feel as if they are being abrupt, impatient, condescending, or are angry with your questions? Do they push off or put off your questions and prompt you to make an appointment for diagnosis rather than a pre- diagnosis meeting right away? Do not proceed if these warning signs are present.

Other questions to ask: How many tests have been performed and how many adult diagnoses given?

How many women, or other self descriptions have been diagnosed?

Do they give follow up support? If so, what sort of supports are offered? ( therapy, support groups, reference to others who might be able to help with specific needs?)


Discuss fees and if you decide to make an appointment to discuss diagnosis processes, be sure you understand how the paperwork and billing will be handled ahead of time, so there are no surprises.

Some doctors will refer you to their offices for this part, that is OK, Be aware of your insurance company’s needs regarding diagnostic assessment, etc… do you have to get the appointment pre-approved?

More discussion about finding diagnosis soon.

Note: This process can be very discouraging and frustrating, especially for those of us who have struggles using the phone, camera/video communications, or have anxiety. Self care is so important.

Be aware that finding proper diagnosis is not generally easy for most of us today. (autistic elders).

Things will take a lot of time and we may reach many dead ends or barriers, but we are not without alternatives in most cases.













Who am I ???

Finding your authentic self after diagnosis


There has been much discussion lately, in the online forums I attend , about masking and finding one’s own identity.
How to drop the mask and be more authentic? How to know who I really am beneath all the adaptive and self protective behaviors I have learned over my lifetime? How do I know which parts are “real” and which parts are camouflage for self protection or ease of coping?

I was at a loss for a long time about these questions. For me a lot of these questions did not apply because as I had aged, I had adjusted my style of dress, my social behavior, my willingness to put up with discomfort, etc.
I had become more authentic to myself for the most part before I learned of my autism.

It might be a process of ageing that we become less willing to put up with social and physical discomfort or meaningless rituals or distressing social situations, or I might have been lucky to have sorted out sources of discomfort and to have allowed myself to discard those things that were most difficult and distressing to me.

I understand the need to sort it all out, and to self accommodate in order to have the best experiences that life has to offer and to eliminate pain and discomfort where we can.

May I suggest we start with the things that we find most difficult and distressing? By figuring out different ways to do things, we can eliminate at least some of the things that are hardest for us to tolerate.

I learned to avoid physical discomfort first. Stopped spending hours on clothing, hair, makeup, and worrying about being “in style” or if I looked right. Flat shoes, loose fitting clothing, easy hair cut, minimal makeup applied only for very special times. Works for me! Even within dress codes, unless a certain specific uniform is required, there is usually some leeway.



I got rid of the scratchy couch that I could not bear to sit on, the bright flickering fluorescent lights. When I lived alone I did not use TV or Radio. I now remove myself to my quiet zone if my husband wants to participate in things that drive me wild (TV and Radio for example).
I have bright clear lighting that doesn’t flicker in places where I need it for reading and close work.
I stopped forcing myself to go to concerts, listening to podcasts or videos, trying to interact in large groups (4 or more is a large group to me), stopped going to restaurants, shopping malls, and other places that caused my sensory struggles to make me anxious and put me in ‘stampede mode”. What was the point?
If things like wedding receptions, anniversary parties, retirement parties, etc send you into panic or meltdown, consider a congratulatory card, note, email, or phone call along with polite regrets.
( you don’t have to explain, just say you are sorry you missed their big day but wanted to send congratulations or whatever message you’d like to give).


I found new ways to get a lot of things done, adapting them to my sensory struggles so that I no longer suffered loud noises, chaotic surroundings, etc.

In replacing those old painful experiences I found joy in solitary walks in nature, taking photographs, doing crafts, listening to my choice of music (peaceful or upbeat and not dissonant, no lyrics since I can’t readily process spoken or sung words), I found the ‘real’ me.

I lost a lot of anxiety and anguish by simply declining invitations to loud parties, noisy social gatherings such as dinners in restaurants, classrooms, malls, etc and substituting meeting with one or 2 people for quiet shared activities.

It may require others in your life to make adjustments too, or you might need to compromise to keep peace, but I urge you to find your most distressing activities and find ways to eliminate them or change them to things that provide pleasure or at least reduce discomfort.

Change clothing, change shopping habits, change the way you socialize or interact with others, change decor or arrangements within your home to accommodate your worst struggles. Many of us have it in our power to make adjustments that can make life so much better. You do not have to do anything one certain way, or in many cases you might not have to do it at all.

Sometimes we need to just stop and consider alternatives. Change can be scary, but taken in little bites, and not all at once, sometimes changes can bring about a lot of relief and comfort in exchange for the pain, anxiety and frustration.

What can you do, one step at a time to remove painful experiences from your life and to substitute or build new and pleasant experiences for yourself?

Millions of autistic adults

undiagnosed in the USA today.

Per the USA’s Center For Disease Control (CDC) there are 5,437,988 autistic adults as described by those being over age 18 upward in the USA today. CDC claims this statistic as 2 percent of today’s population in the USA. Census numbers after 2020 may drive that number still higher.

A notice posted April 27, 2020 claims the CDC has determined these numbers so that states can be aided in budgeting and planning funds, etc. regarding diagnosis and support (“treatment”) for autistic adults. All states now require insurance plans to cover diagnosis and supportive therapies for autistic adults. Children ageing out of the system, which used to close at the age limit of 18, are now going to be supported as adults as well.

The happy side effect of parents of today’s early diagnosed children’s and young adults’ activism ( this was entirely unintentional, I am sure within myself) is the new availability this could give older autistic adults in this country for access to diagnosis and support.
Support plans will soon be in place for adult autistic folks. Will elders once more be overlooked as focus is on the younger generations, with most Americans never suspecting the hidden millions of autistic adults struggling without diagnosis and support that many so desperately need?

Educators of those already practicing diagnosis and those now just learning how to diagnose and recognize autism must learn how autism displays differently in all adults and how diagnosis of adult females may be more complicated than today’s standard diagnostic criteria.


Statistics posted by the CDC show that males ( children) are still diagnosed at much higher rates than females.

There are no known statistics on how many adults have been diagnosed, or the proportion of males to females who have received late diagnosis.

I see the CDC’s post as a ” first light ” showing in the attempts to find diagnosis for all age and gender groups who have struggled lifetimes with autism and never knew, never had help, never suspected.

I have been feeling frustrated and discouraged lately. My personal plans to offer local talks and information to local groups likely to encounter un-diagnosed autistic elders has been completely shut down by Covid restrictions.
Now I am considering a different, possibly more effective approach to gaining more diagnostic and support structure for older adults with autism.
College classrooms are the places that need to offer more information about autism and how it presents in adults and the elderly. Professional groups for individual practices need to be alerted to the presence of adult autistic people. Political entities who plan and portion out those huge budgets need to know about adult autism. The list of places to raise awareness is practically limitless!

As a group, older autistic adults need to speak out about finding diagnosis, and need to bring attention to the need for support, to organize much as the parents of autistic children have.

If population statistics are correct, the adults in the USA who are autistic out number the children who have been diagnosed up to age 18 .

Time to speak up and ask for educated diagnostic and support systems.. Laws for insurance coverage have changed. Colleges and other schools need to be aware and make changes to provide for the future.

Baby boomers will all be over the age of 65 by the year 2030, just 10 short years from now. Will elderly autistic populations get the support they/we will need as they/we age and rely on others for our medical and physical decline as we grow older?

Will young adults “ageing” into the system get the support they need? CDC has taken the first step by providing numbers and an “authoritative” source of information on which individual states will be basing plans now required by law.

Many of us will be watching with interest.
If we are able, most of us ( ageing adults who are autistic, whether formally diagnosed or not) can help raise awareness and place social pressure by making lots of noise to legislators, planners, providers. Call, text, write letters, email, write letters to the editor of your local newspaper, contact local TV or radio outlets…. whatever you can do, we need each other right now.
The demand is there, we know it, but I am not sure that those in the places we need to reach are hearing us. Please do what you can!

Adult children of Autistic Parents

Did you know ?

When I discovered my own autism, I discovered my mother, too, was autistic.

My mother passed away without knowing of her autism. But when I learned of my own,
I quickly recognized autistic traits in my mother’s inexplicable and incomprehensible view of the world.

I recognized her struggles, her personality quirks, her odd behaviors, her anxiety to please others and to impress them. I began to understand a lot of the “why” questions from my youth.

Diagnosis of my autism, for me was the key to living a healthy and fulfilled life. Lack of information about my autism and my mother’s kept me in a world of “should” and “ought”, a world where my failure to function as expected was the main feature and always behind it my self questioning doubts and self punishment, self hate, why could I not succeed where others had? Why was I such a miserable failure at life where most other people seem to do so much better?

Our mother had very rigid ideas of the rules of life. Everything in her life centered around becoming a socialite. Her home, her family, her clothing, the things she did all were directed toward her idea of what “upper class” people should be. She wanted desperately to be rich and famous, glamorous, idolized and admired. She lived a life of frustration and no doubt also saw herself as a failure if she ever gave herself over to introspection, but she never once admitted to having a personal flaw, that I can recall. ( and remember my perception was definitely skewed by my own fears anxieties and autistic lack of insights) Why couldn’t she achieve a social life? She never knew.


Everything in our mother’s life was moderated by “what will the neighbors think?”
You must understand, my perceptions are autistic perceptions and I had very little understanding of any of the others of my family, their motivations, their feelings, their struggles. I was busy being overwhelmed with my own, attempting to avoid physical and emotional punishments and constant criticism and scoldings, I was overwhelmed with every day survival, trying to please and most of all appease others in our family (as well as anybody I had contact outside the family) and had only my autistic mother’s perceptions to guide me and explain my world to to me. I stopped asking for her help and insights around 3rd grade (8 years old?) when I realized the futility of that, and recognized the fact that she was not interested in hearing about any of my problems or struggles. ( She had plenty of her own and her autism kept her from seeing mine) I understand that now.
I displeased my mother so often because she saw her own autism in me and wanted to correct it, punish it, wipe it out. My autistic failures reminded her too much of her own weaknesses, flaws and struggles and infuriated her because I seemingly willfully continued to annoy her by my struggles, with her seeing these as deliberate disobedience and lack of compliance through resistance of will rather than lack of understanding what she wanted of me at any time.
Her hidden and not really understood message to me was “don’t be autistic”… yeah, that was it.

No wonder I had a miserable childhood! At least I can make sense of it now.

I got my ideas of life’s ” should’s” and almost everything else in life really wrong! Nobody’s fault!!! Nobody knew about autism, either mine or my mother’s, nor that of anybody else in or out of the family in those days.

I was told by my mother’s sister and their own mother (my grandmother) that my mom was “simple”.

In truth, she was extremely dyslexic and probably had other struggles with sensory processing. She could barely read and write, had echolalia, used music she learned as a child to express her feelings ( singing some songs over and over and over for all of her life in certain situations).

I think of my own inability to visualize (aphantasia) and my fascination for taking photographs of things I see, and want to remember. I have thousands of images stored in my computer so that I can go back and look at the images which I can’t visualize or remember in a visual way by picturing it in my mind’s eye.

I was shocked ( oh no, I have become my mother!!), when I realized in remembering that our mother was obsessed with taking photographs and that she had amassed a huge collection of printed images, almost all of her family, taken over the course of the years.
Our mother’s photo obsession drove all of her kids and her spouse crazy. Every activity should have a photo, every event needed to stop while she posed us and took repeated photos. She was always excited to look at the photos when they returned from being developed.
I suspect her obsession with photo taking was because she could not visualize in her mind, either. In those days photo taking was very expensive, both to purchase the films and to have the photos developed. I remember my father complaining about the expense!
On top of our mother’s likely aphantasia, add that she was not able to read much at all because of her dyslexia. She struggled to write due to the dyslexia as well.
Her struggles were far worse than mine… I could read and write and had a gift for words, and I am amazed that she accomplished all that she did without these things.
Mother’s hearing processing and her visual processing may have been struggles for her as well, but I will never know. I know she loved movies and television, loved listening to soap operas on the radio, and enjoyed popular music from her childhood onward.

Now that I understand my mother’s autism and have a much better idea of how it must have affected her, I can only admire that she managed to raise 4 children, kept us clothed, washed and fed, kept the house clean and that we all survived and became independent citizens functioning in society.

I grew up in the 50’s and the 60’s and in those days, all failings of children were blamed on poor parenting.

I blamed my mother too, and for some things like her deliberate cruelty, I still do blame and resent her treatment of me. Deliberately causing pain is never appropriate, physically or emotionally.

I can not excuse that part of her behavior. But I can better comprehend it. She had so very few tools available for overcoming her own struggles. She had no insights, as I have been blessed to obtain through today’s knowledge of autism and of my own diagnosis. She had to struggle all her life and never knew about her own autism. She never had the opportunity to gain insights and self understanding, to see her world differently, to make adaptations that might have allowed her to grow and thrive. She never knew.
Today, knowing my own autism and knowing that she died never having the blessing of self understanding needed to adjust her life and her struggles, I am better able to forgive so many of the struggles of my own life which I had been taught to blame squarely on the parenting I had been given. And I can finally forgive her as well.
We survived, how we did it, I am not sure.

Knowing about the autism in our family has been a key to my understanding of my childhood, my youth, my struggles all my life.
Knowing about autism in my mother and possibly in other family members has allowed me to understand all those painful “why’ questions and helped in the healing.

Did you know????

Now I know of my own autism, I wonder how I did as a parent?
Nobody knew about my own autism all the time my kids were growing up.
I did not learn about my own autism until my offspring were born, and grew up to have homes of their own.
Nobody knew back then.
Diagnosis is life changing.

Diagnosis attempts continue

Yet another attempt to find somebody who understands adults, more specifically OLD adult women with autism.

This struggle is rather the norm for adults seeking diagnosis in the USA rather than an uncommon report.

I am blessed to have insurance that will help, but it still will pay for only a small portion of the diagnostic fees, and will not pay, of course, for all of the travel and personal expenses entailed in attempts to find somebody qualified and willing to work with older adult autism diagnosis processes.
The ability to travel or to absorb expenses not covered by insurance is non existing for so many adult elderly.

The best hope for ageing populations with autism is to familiarize the medical and supportive communities with autism struggles and the ways this might present itself in older adults. (We who have not had the advantages of diagnosis and support in youth, and who have largely had to struggle through life with little understanding of all the ‘whys’ surrounding our varied forms of disability and how those have affected us all our lives. )


I had talked briefly with my GP (general practitioner) DR about my search for diagnosis and she agreed she could not help, did not know of anybody who worked with adult subjects. She noted the input from my previous unsuccessful attempt with the neurologist.

Evidently the following/second attempt at diagnosis psychologist’s appointment notes were not forwarded to her as I requested, perhaps pending my diagnostic appointment which never happened due to extreme illness on the part of the psychologist.

The GP Dr has been aware of my struggles with anxiety and depression, and had prescribed meds for me about a year ago. It helped with my mood, and I was able to experience time with no anxiety, but at the cost of sleeping 4 or 5 hours during the day and at least 10 hours each night. I was sedentary and my weight shot up 25 lbs in a 2 month period. We decreased dosage but I was still lethargic and feeling unhealthy in spite of a less anxious outlook on life. I made the decision to go off the meds.
Anxiety is far less since I retired, and my understanding of how to control situations that might call up stress or distress (by avoiding them!) has helped greatly to reduce every day anxiety. Depression seems to be lifting as my feelings of being helpless to deal with so many day to day situations (mostly involving other people) have been fewer.

I saw the GP for my yearly check up yesterday and after my explanations about struggles with communication (which she has experienced with me herself, losing patience when i tried to talk to her and ask questions in the past) she has become more empathetic, or my perception of her recognizes this in her, where in previous encounters that factor seemed to be missing.

Dr GP agreed ( after some verbal wrangling and misunderstanding on both of our parts but mostly mine), to proceed with referring me to the Adult Autism diagnosis clinic in another state. It will entail a long drive (over 8 hours) and overnight stays both before and after the day of testing/examination. I will learn more when the clinic calls me to gather information and set up an appointment.
I have read the books the Autism diagnosing doctor has written about elderly autistic people and how diagnosis differs from standard diagnostic procedures for youngsters.
I have struggled recently to listen to a podcast interview with her. (my auditory processing is not very good) and I am sure she will either be able to pick my much-adapted autism out or tell me I am not autistic with accuracy.

This will be the ‘last stop’. If diagnosis is not autism I will have to look elsewhere to understand all the things that learning about autism seems to have answered for me. I can not ask my very supportive spouse to continue to invest our retirement dollars in a quest that will be of no financial benefit to anybody, and will only confirm what I am sure of in my own mind and heart. ( the benefit of official diagnosis for me being credibility as an autism advocate).
I will no doubt discuss the appointment and everything surrounding it in more detail as things fall into place for the event to happen.
Mean time I worry.

The neurologist of my first diagnosis attempt told me I was not autistic with an aura of almost gloating smugness, and the emotional devastation I felt because of his descriptions of my so called “other diagnoses” still gives me anxiety and dread.
I know his knowledge (or lack thereof) of autism was from the 1960’s-70’s when autism was not understood as well, and was not accurate, yet the damage done through his assigning so many other labels of impairment/mental illnesses had/ and still has me shaken to the core. The childhood and early adulthood me believing I am wrong and bad about everything surfaces and remains strong when I think about this, it is so easy to slip into the old habits of my approach to life for the first 65 years – all my fault!!!



One small part of me is fearful this will happen again.

So many people, women especially, in some of my on line autistic groups report having been given multiple labels for serious mental disorders and having been treated sometimes for years, for these disorders with little to no success, drugs and therapy simply compounding struggles, making one inert, or actually making things worse.


Society and medicine are just beginning to understand autism and how to recognize it, especially in aged persons who have had to learn coping mechanisms on their own, and to find their own way. I look forward to seeing adult diagnosis and understanding of autism before I die. I think it is coming. The more we can do to raise awareness of adult autism and help establish criteria and availability of information to diagnosing and supporting entities, the sooner this will become reality.