Autistic Masking

what about masking? What is it?


Is masking good? Is it bad? How do we discover who we are underneath, when we have been taught all our lives to hide behind masking behavior.

Masking is a hot topic on autism discussion forms these days. From early age we are trained that certain behaviors are acceptable, and certain behaviors are not. From early on we learn to be polite, say please and thank you, learn to bathe, to clean our homes and do laundry, become toilet trained, to behave as society expects us to in order to fit in and allow ourselves to progress in society. This is true for all of us, autistic or not.

For those of us with autism, we might also be forced to hide our physical stims, force ourselves to make eye contact, have social interactions, do many things that are exceptionally difficult for us in order to hide our autism and make is “seem like” everybody else. But it doesn’t work!

Recent studies have shown that no matter how much training we have had, our autistic characteristics are discerned on an instinctual level by neurotypical individuals.
Our body motion, gait, facial expressions, voice quality, use of vocabulary, and other things natural to autism are picked up by non autistic individuals within moments. There is no point to “faking it” we give ourselves away as ‘different’ every time no matter how hard we try to hide it.


Learning social structure/ rules for polite public behavior/ simple manners and basic hygiene are parts of growing up and all children are expected to know these things. Many children may understand these rules without being taught, except for a few reminders when they get carried away with youthful enthusiasm or have limited coping skills. Autistic individuals may need to have detailed explanations of these things and may need help understanding how to perform as expected. This is not masking! This is learning how to get along in society using cultural rules of those around us.

Masking is when we force ourselves to role play things that are not natural to us. To force ourselves to be social when we would rather be home watching tv, to force ourselves to wear makeup and clothing, wear certain styles of hair or participate in things we hate because we don’t want to be thought of as “different” “odd” “quirky” “creepy”. We mask when we hide our interests, when we try to please others using behavior that is false to us or not of our nature because it is expected of us. Masking is giving up a beloved hobby or activity because others feel uncomfortable or think our interest is childish or inappropriate. Masking is pretending to enjoy opera when you would rather read a book or go to the library. If we are doing things solely to “fit in” or gain approval, and if we are doing it to the point that we feel sick with anxiety or distress, are having health issues, breakdowns, meltdowns, or panic attacks, we are masking.

How do we drop the mask and become true to our real, inner selves?
Think of the things you hate doing the most. Think of the things that are distressing, stressful, anxiety inducing, or actually painful which you do for the approval of others.

If we select the worst struggles we have in our lives and figure out a different way to do those things or find things to do instead, we are dropping our masks and becoming true to our inner selves.

I was not true to myself for the first 30 years of my life and I ended up with a suicide attempt. Therapy after that helped me find my real self.

I learned that I did not have to please others if it meant pain or emotional distress, putting myself in danger or participating in self harming behavior simply because I was trying to please others.

I began to dress simply instead of spending hours doing makeup, hair, preparing wardrobe, using hours of exercise and diet each day to maintain the standard my then husband expected of me.

I began to avoid the weekly dinners out at a new restaurant every time and instead had cookouts at home or simple picnics in natural settings.

I began to opt out of going to every football, baseball, basketball and hockey game and doing ‘sports’ every day of the week.

I began to listen to music I liked even though my partner did not.
I chose to do things on my own, much to the anger of my then husband.

Eventually I chose to avoid the company of many others determined to keep my behavior and interests within boundaries that they chose for me.
I found others of similar interests, beliefs, and behaviors instead. This happened over a lifetime of making choices over individual struggles regarding activities that caused emotional or physical pain.

My life evolved over time, each time I discovered something that was very very hard for me or something that actually hurt or caused me to feel sick, I figured out ways to exchange that behavior for something I actually liked instead of forcing myself to a mold of other’s expectations. I could be myself! I could do things my way! What a freeing concept!

Little by little the true person inside began to show herself.

Those who knew me in my 20’s at the time of my first marriage, my first jobs, my first few attempts at being social, participating in group activities, sports, and shopping activities, etc, would not recognize me today.

Some of the changes may be part of natural evolution of ageing, but a lot of the changes in my life were a deliberate effort to let go of others’ expectations that I must live a certain way, look a certain way, have certain interests, certain political beliefs, certain social circles.

Take the time to think about all the things you might do in a day which cause discomfort, distress, dismay, or actual physical or emotional pain.

Do you absolutely have to “do life” that way, or can you make changes in individual struggles over time to give yourself relief and to find peace?

Autism and the sense of touch

Sensory processing differences in Autism includes how things feel

We rely on our sense of touch to tell us about the world around us. Like all our other senses, processing of the input we get through how something feels to us can be skewed, from being super stimulating, irritating, distressing, soothing, or simply not feeling much at all.

The differences in autistic sensory processing can cause “every day” experiences of things we touch or feel to be distressing or even painful.

On the other hand, we can experience pain or other physical stimulus on much lower levels than what is considered the “normal” or “average” (neurotypical) experience.

Textures of food cause many issues with eating, from the way it feels when it touches our lips, feels in our mouth, or how it feels as we handle it (slimy, gritty, lumpy, greasy, sticky, chunky, sharp, hard, thick), food textures and temperatures can stand out as extremely uncomfortable experiences to many of us. This becomes a problem if we are forced to “clean our plate” or to try things that are extremely uncomfortable to us. Our hesitation to try new foods may be directly linked to fear that the taste or texture will be overwhelming to us.

Textures of clothing we must wear can often give us much distress. Is the fabric knotty, rough, too smooth and slippery, does it have seams in places where it feels uncomfortable? We can be super sensitive to pressure of restricting collars, cuffs, waistbands and the like.

Some of us respond to snug lycra or other close fitting clothing with a great deal of pleasure and comfort and others (like me) avoid that ‘squeezing’ slick texture due to extreme discomfort of being “touched all over at once”.

Some of us can be absolutely unaware of any clothing issues never notice that our shoes are giving our feet blisters, that the garment is far too tight or loose, etc etc.

Textures of the things we touch throughout the day can be distressing, from the utensils we use to eat, from the carpet we walk on barefoot, to the fabric upholstering the furniture, to the sidewalk, street, lawn, sand on the beach, the feel of the bath or shower under our feet or as we touch the enclosure surrounding it, the plastic or fabric shower curtain, the texture of the door we must open and close to enter or leave the hours or our rooms, etc etc.

We can become desperate to avoid the sensory overload of touching or experiencing the feel of many things throughout the day.

This sensory experience may well begin in infancy, long before we have words to describe the distress we are experiencing and probably is the cause of much mystification among parents trying to figure out what is distressing us children.

Sense of touch/ the way something “feels” is also involved in our ability to use tools, to do things as simple as walking or sitting, lying down, or standing. We use the sense of touch to help us know our surroundings, how much pressure to apply with our feet to push ourselves along as we walk, run, how much pressure to apply when we give hugs, give a handshake, or a kiss!
We need to be able to feel the pressure we apply and learn to judge how much to use when we open and close doors and drawers, open and close a jar lid, use eating utensils, lift and replace any objects from the surface it is resting on (think about how many times we do this daily).

We use touch and the way things “feel” every day in so many ways. If having my hair brushed feels like a thousand razors against my scalp every day, I will fight that sensation with all my might. I am not just being stubborn and willful, it HURTS!

If I avoid washing my hands because I hate the feel of that cold water running between my fingers, can we find another way to get my hands clean?

Most times we encounter resistance to things like baths, showers, shampoos, getting dressed, putting on our shoes, or using certain utensils or products for self care or household chores, it is not out of stubborn will, it is because these things are causing discomfort. Even as grown adults, we may not be able to explain for ourselves, we only know we hate it and want to avoid it because of the way it feels to us.

Children and many autistic adults are famous for resisting, but how many of the struggles we face might have the roots of resistance in pain, discomfort, or distress caused by the way we experience the task we are asked to deal with?

Even if you are grown up and living on your own, are there things in life that you avoid or simply hate?

There may be ways to make the experience better by adjusting the way it feels.

If you hate to bathe because of the rapid change of temperatures on your skin as you undress and how it feels to have the shower change temperatures, if you hate the feel of the water running over your face.
If you hate the feel of your wet hair when you shampoo, etc etc, there are other ways to get the job done. Think of the things you hate the feel of the most (might take some sorting to recognize what exactly is causing the distress) and make small changes to avoid those sensations.

If you hate the feel of using a washcloth, can you substitute a sponge or one of those nifty new silicone body brushes?

Will you be more willing to wash and dry off if you don’t use those stiff scratchy towels but instead dry with flannel, or velour/soft fabric of some sort?

Lots of sensations can be changed to make the experience better, regardless of what we struggle with.

We can often change the way something “feels” by using a substitute or doing things differently.

On the other side of this question is the “non sensitive” person who doesn’t notice much about what they may be feeling.(not emotions, the way something feels to our bodies physically) .

Blisters and sores on feet or pressure sores from sitting or lying too long in one spot, cuts and bruises which seem to suddenly appear with no memory of how they got there, even limping and not recognizing we have broken a toe or another bone…. lack of “feeling” or recognizing the feel of something as important and needing attention can sometimes be helped by occupational therapies which help us interpret what we are feeling, and helping us find and recognize when something hurts or is not right.

What is interesting to me is that hyper sensitivities and hypo sensitivities can exist in the same person or can vary with time, place, experience, even from hour to hour or day to day.

If you are not diagnosed yet with autism, the way you experience things you touch, or that touch you, might be another clue to being autistic.

Autism and Visual Processing

Did you know there are many kinds of visual processing disorders?

Since autism is neurological in nature, it is not surprising to learn that autistic folks often have sensory disruptions of many sorts. Visual processing disorders can take many forms.

1 Problems with visual discrimination

2 Problems with discriminating the difference between a figure and the ground/background

3 Problems with visual sequencing

4 Visual motor processing troubles

5 Visual memory struggles , long or short term

6 visual-spatial difficulties

7 Visual closure struggles

8 Visual reversal of letters, symbols

We rely on vision every day and when our vision is not functioning correctly we can not trust what we see or think we understand, we can not perform reliably in expected ways.

Signs of struggles with visual processing include slow responses to visual input, trouble responding to questions regarding something we have just seen or been told to look at (reading, watching, doing any task in ‘real time’ after visual demonstrations).

We may confuse information, only absorb part to none of it, may not be able to recall something we just saw, or may reverse images of things when asked to write them, may see numbers and letters as reversed/disordered as we look at them.

We may frequently misjudge distances of objects near and far, so that we trip, fall, run into things, have accidents if we drive or ride bikes or other vehicles, have difficulty working at speed.

We can not rely on our visual input. We may use our hands to guide us in motion, touching things or others in a group to help us understand where we are in relation to others and items in our path.

My own visual processing is in the 25th percentile.
When I learned this at age 68, I was amazed that I have done as well in life as I have. Suddenly it was understandable that where I had been accused of carelessness and not listening or watching as things were explained to me, I was indeed paying attention but the things I saw demonstrated were not being processed.
Things like a team mate throwing a ball and its hitting me in the face every time.

Things like being shown how to operate a machine and failing to understand.
Things like cooking, sewing, or cleaning processes being demonstrated to me and my failure to perform them (all of which I was punished or penalized, criticized for all of my life).
Every one of those failures made perfect sense!

It has been such a relief to learn that my lack of coordination and my physical incompetence, my failure to perform in so many ways have an explainable neurological answer!

After a lifetime of self blame and being blamed by others, I can finally understand my own neurology and make accommodations in my life to help make things easier and safer, less frustrating and
more pleasant.

How does visual processing disorder play a part in your life???

It may require some thought and sorting of your life experiences, but for many of us, it will explain so much of our past struggles.

With new knowledge of our neurology we can make adjustments to live a better life.

Autism and Auditory Processing

Auditory processing disorders may be one of the most common to autism.

Struggles with communication are a hallmark of autism, and one of the diagnostic criteria that must be present for an autism diagnosis.


All my life I have been told I do not listen. I have been told and chastised over and over to “pay attention”.

I was punished in school and at home for not following directions, for not answering questions directed toward me, for asking questions for clarity and being told with frustration or anger,
” You should have listened when I was explaining that” or “I already covered that”.

I have been repeatedly tested for hearing and have a range of perception of sounds that is much higher and lower than average. I have really great hearing!

Here is the catch, though.
I may hear everything that goes on around me, I may hear every word spoken and my hearing may be acute with vivid clarity, but once I hear the sound, it may not be translated in my mind to information I can use.

I may only “get” the slightest idea of what the 10 minute lecture was about. I may only understand that somebody is very angry with me because I did not do, or did do something that they did not want me to do.

I may not know how to proceed with the next assignment, project, or workplace task because every sound I heard did not register in understandable form, if it registered at all.

I was told all through my childhood and young adulthood I had no excuse except laziness and deliberate insubordination for my failure to perform as expected.

If you find yourself being chastised over and over for not paying attention, for deliberately ignoring instructions or being lazy and undependable, consider being tested to see if you, too, might have disabilities surrounding auditory processing disorders.

Sensory processing disorders are proving to be hallmarks of autism.
Diagnosis is still through pinpointing certain behaviors, but more and more, science is seeing that our neurology and differences in the way we process sensory information is behind the “abnormal” clusters of behaviors that currently define autism in diagnostic tools.

Due to the fact that our neurology is unevenly developed, we may have processing disorders in any or all of the senses we use every day to bring us information about our world and help us understand how to act and react in any situation.

When we can not process the information our senses bring to us in “normal” ways, every thing we experience is affected.

More on sensory processing soon.

Autism and Executive Function

Do we know what we don’t know, what we need to know?


So many autistic adults have had life long struggles with executive function.
Somehow we lack the skills and insights to make our everyday life “work”. We get stuck somewhere mid task, don’t start tasks, lack organization, can’t figure out how to prioritize,
have no idea where to even begin.

Have trouble paying bills on time? Trouble keeping house, doing laundry, maintaining the car, problems with clutter? Self care a problem, not getting needed health care, having healthy eating, sleeping, bathing ? Having problems with food preparation, grocery shopping, meal planning? These every day activities of healthy living are all things we need to do. They also all require several steps to perform. Executive function is working correctly when we know we need to do something, plan how we will do it, when we will do it, know which steps to take to do it in proper order, and how to start and finish. If we have multiple tasks we must figure out which is most important and put it in order of priorities. Deciding which comes first, and when we will do them.

Many of us can use tools to help us function better. We have calendars, alarms, reminders, helpers, or counselors, and we can get aid from occupational therapists or other specialists in teaching us how to assemble all the steps to do any job. This is simply overwhelming for many autistic individuals, and involves too many skills and too much sorting to “go it alone”.

There is no shame in asking others for help.

There is no shame in hiring others to do the “hard stuff” if it seems impossible to master it.

I had to learn every step of most household tasks and build on my knowledge as I was coached about how to do it. I was luckier than most because I could get information from books and practice advice on things like housekeeping, car care, health care, how to do household chores, and I could learn about making budgets, managing money, etc.

A trusted friend or family member, a therapist, or counselor can help you find tools that will work for you.

At 70 years of age, I have a built in routine of long practice. I have times and calendars to help me plan and execute most household and self care chores. I also have “backup plans” for if I miss something. I have a way to get myself back on track so that I don’t allow my whole schedule to go “blooey” and lost it all.

I also have a spouse that follows rigid routines to help keep me on the path to performance.

I have been lucky to have these things. If I had not been taught early how to do each little chore step by step, and been able to read about what I did not know and practice it, I am sure I would be struggling.

The good news is that we can learn how to do these things. We can reach out to others to get the help we need sorting out which skills we need to learn, and how to apply them, and to decide when and where, and how we will do each of these things.

If we take it one little step at a time, the skills of executive function we struggle with can be helped in many ways.

If you find yourself overwhelmed and not knowing what to do, please reach out to others to help you sort through it all and help find the right tools for healthier living.

Autism Communication

Be specific! Open-ended questions are difficult!

“Struggles in communication” is one of the features used to diagnose autism. If you do not struggle with understanding and communicating, you can not be diagnosed as autistic.


We (Autistic individuals) may not speak, we may have a hard time finding the right words, we may freeze up when asked a sudden unexpected question. This is due to sensory processing difficulties in various parts of our unusual neurology.

It is frequently missed or misunderstood when asked vague questions like “how are you doing”, or “tell me about yourself”.
We also miss hints about everything: “this car needs washed”, “Those dishes are piling up”,
“it sure would be nice to go out today”, “I wish I had one of those” , are all taken literally and accepted without seeing the underlying “call to action” suggested in the comments.

I have been asked “do I have to paint you a picture” with great sarcasm. Well, yes, sometimes illustrations might help!

The less open-ended or vague your communication to me is, the better I can understand your agenda, the issue at hand, the expectation, the thing you may be subtly suggesting.
Subtle doesn’t work!! Calm, frank, open communication in a very direct and specific manner for the win!

Open-ended questions are so difficult. We struggle to understand what is wanted or expected of us. (autistic people)
Autistic neurology, (sensory processing neurology deficits) many of us have may cause difficulty picking up on nuances such as tone of voice, expression, body language, or context to determine intent.
Autistic folks are usually very direct and usually take no offense in others being direct in interacting with them.
We tend to love details and specific information because it makes it easier to decide how to respond safely.
Yes, safely!
Tremendous anxiety goes with almost any interaction with other humans. So many of us (especially older adults with lots of life experience) have learned that our responses to others can annoy, irritate, enrage others and most of the time we will not have a clue to why this is so.

If we are given very specific questions or requests, it helps us sort what is expected of us and helps us decide how to respond.

Knowing what is expected of us gives us a base to interact with others while feeling safe and less anxious about possible mistakes or misunderstandings.

Autism Neurology

Uneven neurological development is the hallmark of autism.


Autism is developmental, present when a person is born and it is present until that person dies. There is no cure, there are only ways to help adapt to living which can make things easier and less burdensome.

Autism is decidedly genetic in nature, and its presence is discovered mostly through behavioral clues.

When an individual is being examined with autism diagnosis as a possibility, it is urgently desired that one’s developmental history be examined.

When measured against neurotypical peers, something interesting is going on in autistic children.

Science long ago set guidelines about what is normal development in a child and what is abnormal.

Most children grow and develop along the same pattern, some being slightly slower or slightly quicker to show standard signs of growth and development.

Babies follow motion with their eyes at a certain age, respond to sudden noises, make sounds, reach for their feet and toes, roll over, sit up, crawl, take their first steps, speak, and respond in certain ways at certain expected times.

Youngsters generally sleep through the night at a certain age, speak in sentences, are able to tie their shoes, are toilet trained, can ride a bike, can read and write at specific well defined ages.

Autistic children are seemingly on their own schedules.

There are early and late developers, some skip stages completely.

Some are reading before they can speak, some never sleep through the night, some never toilet train, ride a bike, read or write. The development they experience is uneven and erratic, unusual…. not “normal” or average compared to the majority of developing children. ( neurotypical)

Some are very early, or mix stages, being extremely early in performing some tasks and late in others.

Since autism is developmental, and most signposts of development are well documented , Doctors know what to expect at certain ages in a child’s development.

This is why a diagnosing doctor may ask about your childhood.
Did you speak early or late? Did you read early? Did you start school early or late?
They will ask about early childhood behavior.
Were you fussy, placid, hyperactive, or chatty?
Did you over react to loud noises, flashing lights, fear the dark?
Did you spend a lot of time lining things up, playing alone, making up songs or rhymes?

All childhood behavior can be examined looking for clues to autism.

In following blogs and participating in online forums, some people relate incidents where a diagnosing professional says they can not be sure of autism because the person is so old they could not produce a childhood history. They are sometimes denied an examination at all if they can not produce a witness to their early childhood!
Their parents may be dead or estranged, or otherwise not available and no long term old friends are present to tell of the individual’s early history.
This is wrong!!! DSM clearly says that lacking early history, a diagnosis can still be made.
I have wondered why the testimony of the individual being tested (their memories) is not acceptable?

If you can remember struggling to do things a younger sibling did with ease, if you know you were an early reader or a very late speaker, these and many other things are great clues that you had signs of uneven neurological development and that autism is possible, even likely if unexplainable by other diagnoses.

Every day science is learning more about autism. Older people who missed diagnosis simply because it was not known in their childhoods have many clues they can use for finding hidden autism. Remembered details from childhood must not be discounted in cases where there is a lack of other witness.

Autism connected to Suicide

Significant large studies performed in the past 5 years provide new information about the strong connection between Autism and suicide.

In the general USA population suicide rates are around 1 in 313 .
In the diagnosed Autistic population, suicide rates are around 1 in 56.

Autistic women, especially those with other diagnoses such as anxiety, depression, bipolar, borderline, etc. are up to 9 times as likely to attempt suicide.

Over 66 percent of diagnosed Autistic adults report having thoughts of suicide. Over 33 percent say they have made plans or attempted suicide.

In one study involving multiple hospitals and treatment facilities, adults admitted for suicidal behavior without an Autism diagnosis were screened for autistic behaviors. 44 percent were found to have Autistic behaviors strong enough for diagnosis of Autism.

Hospitals and treatment facilities are beginning to routinely screen for Autism in undiagnosed adults as part of the admission procedure when suicidal behavior is involved.

How many more undiagnosed autistic adults may be included in the overall statistics of suicidal behavior that has been gathered in the USA?

Doctors did not begin to diagnose Autism until 1980 and even into the 1990s the definitions of Autism only found severely Autistic and mostly learning disabled children. Criteria for diagnosis has been revised several times in the DSM , and current understanding of Autism is much better today.

Adults born before 1980 were never screened for Autism because such screening was simply not available.

DHS and the Census Bureau estimate that there are over 5 MILLION Autistic adults in the USA today; most have no idea of their Autism diagnosis.

If you have struggled with suicidal thoughts and behaviors or have a loved one who has done so, especially if treatment has been unsuccessful or diagnoses of other conditions has been labeled “unusual presentation” of that diagnostic condition, please consider the possibility that Autism might be present.


Knowing one’s diagnosis can give useful self-information, new insights and perspective on struggles of the past and present, and provide new ways of thinking and living.

Diagnosis can be life changing, even life saving.

Questions, discussions, studies citations, or for a speaker for small groups, please contact me: Autisticelders@gmail.com

See also: https://oldladywithautism.blog

Please share, copy, quote, thank you,
Debra Brisch



Adult diagnosis of Autism

Things you might not know

It might surprise you to know there is no standard procedure to determine or identify autism.

There is not a genetic test, a test for chromosomes, blood test,
a certain “look” or appearance ( You don’t “look ” autistic) for autism.

There are no standard characteristic behaviors that all autistic people share.

Science is still learning how best to identify autism. In recent years more information has been discovered that has helped shape our idea of autism.

Autism’s rarity (believed to be 2 to 3 percent of the total population although nobody really Knows, since diagnosis is often missed, especially among minorities and among women).

There is not information about autism in many cultures around the world,
its frequency, nor is there understanding of autism at all in many places on earth.

Many diagnosing doctors in “developed” countries around the world are using information that is decades old, and these “specialists” may not be seeking new information besides what they learned as students.

Information in books is not up to date- by the time any book is published much information is already dated.

Consider then, that those professionals who went to school 30, 20, or even 10 years ago will be using information they learned that long ago from books that were outdated when they were studying them, and attempting to apply it when they try to diagnose autism.

Unless they have made autism a specialty, only 2 or 3 percent of any neurologist, neuropsychologist, or psychologist’s clients will likely be autistic.
With so little understanding and so little practice at sorting information regarding diagnosis, is it any wonder that even when we attempt diagnosis by a professional, so many of us (autistic folk) are given misdiagnoses?

Don’t be dismayed if this happens to you. You can keep seeking diagnosis with somebody who specializes in autism and has experience with adults, minorities, women, elderly, etc. depending upon one’s self description. There will be difficulty today in locating such an individual.

Many adults report living with misdiagnoses and being unsuccessfully medicated or given treatments for disorders they do not have until their autism was discovered. How many others are out there still, being given ineffective treatments, being told they are atypical or intractable examples of their (wrong) disorder?

If all treatment fails and you are still suffering and not finding change or relief for your diagnosed disorder, you may have been given a false diagnosis/label due to the lack of familiarity with autism and the many ways it can present itself.


Today autism is diagnosed by observing behaviors, testing neurology, discussing one’s life history and quirks and struggles. Everything depends on the skill and experience and up to date knowledge of the diagnosing professional.

The only criteria that is used is behavioral.
There is no other criteria at this time that can be used.

Autism is still new to science and until very recently there has been very little understanding of autism as having a neurological basis. Even in the past 5 years autism is described as being neurodevelopmental and based in the differences of our neurological development as compared to “average” or “normal” development in our peers.

Obtaining diagnosis for autism in adults will become easier in time as better tools are found and applied by more competent and better educated professionals. That time can not come soon enough for the over 5 million autistic adults in the USA, most of whom have no idea they are autistic.









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.