Autism Communication

Its not always what people think! Hyperlexia and Hyperverbal defined

Its all about words! Stereotypes of what autism “looks like” in the way autistic people behave, what we do or don’t do, etc. abound. There are so many misunderstanding about what autism “is” and how it might affect a person!!!

Here is a look at the way a percentage of autistic folks experience their world.

Most common ideas about autism include thinking that all autistic individuals are either genius/savant or that we are deficient intellectually.

Of course, like all stereotypes, there are plenty of us “in between”.

It may be more difficult to find diagnosis if an autistic individual has no intellectual deficit and is “good with words”. Autism can affect us in so many other ways!

Hyperlexia is defined as a developmental quirk: the hyperlexic person learns to read and recognize words at an extremely early age, perhaps even as they are learning to speak.
Hyperlexic individuals often read and understand words at a much higher grade level than their age peers.
As well as being able to read and understand words, it is pointed out that most of these individuals do so with a child’s understanding , so reading a novel such as war and peace, or other volumes may not make complete sense to the child in question.
Being immature in years and experiences, insights, nuances, implied references, innuendoes and other social cues may be missed, just as they might be in any other children.

It is often pointed out by mainstream observers that eventually things “even out” and peers of the early reader “catch up”.
Of course even then, some people are better with reading and writing, “good with words” than others.

Hyperverbal individuals use words vocally and with enthusiasm!
Hyperverbal children use words that are usually not included in vocabularies of their childhood peers, and this may continue throughout life, with the hyperverbal person using uncommon words and different sentence structure than “mainstream” communication.

This tendency might be called “didatic” ( refer to “little professor” and autism) and there may also be problems with prosody, the tone, rhythms, patterns of our speech. But speak we do, frequently, mostly fluently, and willingly/frequently/often about our favorite subjects.

Because the person in question (hyperlexic/hyperverbal) usually has the ability to form sentence structure and present thoughts in a relatively coherent manner, diagnosis may be denied or not suspected. “autistic people don’t do that” ( one attempt at finding my diagnosis led to this comment from the neuropsychologist – who I learned later had never identified a single autistic person in his 40+ years of practice )

I suspect that many people who participate heavily on written/messaging types of internet forums, those who blog, or write may fall into this category. That only makes sense, right?

We don’t have to be autistic to have this “good with words” characteristic, but it makes sense that a certain percentage of autistic individuals may also have “the gift of words”.

If you suspect you might be autistic, don’t let the fact that you are “good with words” keep you from exploring the possible other ways autism might be working in your life.

Now approaching 5 years from my diagnosis at age 68, I can see that hyperlexia and hyperverbalism worked against me finding diagnosis, and I do believe I exercised my understanding of words all my life and used this form of learning and communication until it grew like a muscle.

Nothing else worked as well due to my sensory processing struggles. ( 25th percentile visual processing and 35th percentile audio processing)

Words were the key to understanding my world . Maybe this is true for you or your autistic loved one too.

Autism and Maladaptive Coping

(when we learn to defend ourselves against life in unhealthy ways)

Ok, so first, what does “maladaptive” mean?
Maladaptive is a description which means “bad adaptive” and it refers to the unhealthy ways we may learn to cope with our life situations.

Maladaptive behaviors are those which might have worked at one time to help us escape some of our struggles.
We develop poor coping skills in self defense, especially when we must find ways ourselves with no guidance, input, insights or role modeling from others to help us.

Maladaptive thoughts or beliefs may be ones that we used to explain our struggles and reasons for the conflicts, misunderstandings, or other troubles in our lives.

Most of these behaviors, thoughts, and beliefs are learned when we are quite young.

Maladaptive thoughts and behaviors are not exclusive to autism, anybody can develop them, but perhaps because of autism’s struggles with social interactions and communication, we may tend to develop such self protective thoughts and behaviors more frequently.

I just read a paper which polled psychologists working with autistic individuals and all of them said they had never met an autistic that did not have some degree of maladaptive behavior and/ or thinking.

This would especially be true for those who did not have positive role models, explanations, and emotional support in our lives, or those of us who grew up in unhealthy situations where poor coping or unhealthy behavior was present to begin with.

Examples of maladaptive behavior would be fearful or aggressive behaviors (meeting every life challenge with fear or anger), belief that we must always please others, that it is our job to see that everybody is happy, that we must strive to please, to make sure nobody gets angry with us, that we are always wrong.

We might think that others are always wrong or “against us”, that nobody is responding to us when we want them to or in ways we want them to, so therefore nobody cares!
The list goes on.
Maladaptive behavior can be self injury or addictive behavior/substance abuse, enforcing and insisting on rituals or certain other ways to comfort or “protect” us.
We might believe that certain people or groups of people are out to get us, hate us, or are otherwise the cause of our problems.
We might think that if only we found a love partner, lived in a certain place, had a certain job or a certain possession, won the lottery, our lives would be changed and everything would be the way it is “supposed to be”.

You can see how complex and varied these maladaptive thoughts and behaviors can be.
With nobody to advise, explain, guide, mentor, we have been left on our own to figure it all out and most of us simply did the best we could to survive. Most of us got some of it wrong!

The good news is that once we are aware of our unhealthy thought and behavior patterns, we can work to replace our old thought and responses with newer and healthier ways.
Like any habit, we can learn new ways to do it!

I had a number of maladaptive thought patterns and behaviors that I had learned and used over my early life time.
The family I grew up in had many poor coping skills and patterns of manipulative, shaming and blaming behaviors and thoughts.

With the help of a counselor I learned to recognize unhealthy manipulative and coercive communication and replace it with healthy self assertive communication , and how to defend myself against such behavior and communication from others.

I learned that many of my beliefs about my self, my life, the way others treated me, the things that happened to me, were unhealthy and simply not true. I had to learn about the actual nature of healthy relationships, healthy behavior, healthy self care and setting boundaries, and so much more.
Many young people learn, or can see these things for themselves as they grow and mature, and many others may need help, guidance, explanations and coaching to find healthier and more productive, less emotionally painful ways to live life.

Looking back on my early years, I can see how absolutely desolate of life skills and insights I was, as autism, my unhealthy childhood ‘roots’, my unhealthy maladaptive beliefs and lack of the tools I needed to interact in healthy ways with the world around me was disabling and painful.
I could not find my way “out” without an outsider to help me understand and to see where the behaviors I relied on to survive were no longer working and that I could replace them with other more functional and effective tools which I could use every day to have a better life, better relationships, better understanding of my world.

If you are struggling constantly, are in emotional pain, if you can’t find a way out of your daily misery, anxiety, and emotional pain, I urge you to find a life coach/ therapist/ counselor or mentor to help you sort the coping tools you are using, discard the unhealthy, maladaptive ones, and replace them with better ways to move forward in life.

If I could do it, I believe almost anybody can. It is emotionally scary. for many of us, it is almost impossible to see or say “I was wrong” in my beliefs, in the way I tried to handle things, in the ways I learned to cope.
I was wrong ,as in mistaken.. yes, not bad or shamefully wicked, not to blame : I had used the only tools I had available, that was not my fault, it is not yours if you are not coping well, either!
I got a new box of tools, and I haven’t regretted it for one moment. Life has been so much better!
Join me, won’t you?

Autism history (my own)

Thinking about what I have learned. Random thoughts and insights .

It has been about 7 years now since I began to suspect my autism diagnosis; the blog here just celebrated its 5th birthday, and I got a professional autism diagnosis two days before I turned 68 years old, that would be 4 years ago.

I have had time to sort my autism, understand autism’s history and my own personal history.

I have been able to finally understand how autism worked in me and my family situation and my young adulthood right through middle age and retirement. Yes, that is right, I never knew about my autism until after I was retired.

All that happened , I had spent most of my life in struggles related to my autism before I understood I am autistic, and have been from the moment of my birth. Nobody knew!

It has taken me a long time to recognize and realize how difficult things are for me, compared to those all around me. I am truly impaired, truly disabled as a part of my autism. I had no idea!

Things others do with ease requires a great deal of effort for me to perform, and in a lot of cases, my neurology is simply not up to the job.
It has been humbling, humiliating, fills me with dismay when I remember all the social struggles with others and see how I “didn’t get it” in almost all cases.
I understand now, how I caused others pain, anger, and annoyance all of my life without ever knowing; feeling helpless, hopeless, abused and rejected but never understanding all the “whys” behind it. Nobody knew!
All my life I was told I was not trying hard enough, not doing enough, being a jerk, being deliberately malicious, cruel, thoughtless, I could do better, I should snap out of it, shape up, get with the program, change my ways. I was the problem in all cases and I should stop it right now!!!!

I had no idea how to do this, nor did I understand what they meant by those things, except that it was all my fault, and I was doing it deliberately, They thought I was evil and wrong, a bad person, and was told repeatedly I knew exactly what I was doing and I should stop it!

I still remember (and always will ) weeping with sorrow and helplessness through these times of blaming, punishment and shaming, and my wailing “but I don’t know how”
Every time these things happened being told “you know perfectly well what you are doing”.
Truly, I didn’t.

After a long life filled with misunderstanding, helplessness, hopelessness, emotional pain and damage, depression, suicidality and despair, I finally learned in my autism diagnostic process that I had sensory processing disorder- that I only understood 25 percent of what I saw in “real time” and only understood 35 percent of what I heard.

After having had my vision corrected in early childhood (around age 7 or 8) and having been tested as having an exceptional range of hearing from very high to very low registers, I was told I had no excuse for my multiple failures in every situation in my life, from social struggles, communication and understanding others or myself, following instructions, never being able to complete or learn any task without asking for loads of explanations and asking a hundred “whys”. Shaming, blaming and punishment were almost daily things for much of my life.

I found out there was a true neurological reason for my multiple failures.!!
That was stunning, and took a lot of time to sort.
I did not at first understand what these inabilities to process almost anything in ‘real time’ meant regarding what I was capable of, what I was asking of myself , what others expected of me.
My inability to perform as expected in almost every case was tied deeply to my autism and my neurological failings, not my personal ones! Nobody knew!

Maladjustment in coping with my struggles where nobody, including me, understood my neurological shortcomings, meant emotional suffering for me and most people who associated with me on almost any level. Nobody knew! everybody, including me, misunderstood almost everything !!! Amazing!!!

Ah, how freeing it has been to understand that my sordid, painful past was not all due to my moral and personal failures, but that my neurology was simply not set up to live life the way I was expected to, or to perform as I was expected to.

It has been Such a huge relief to know and finally understand all those painful “whys” of the past.

I have been able to forgive myself and others over all of the past. Nobody knew. Nobody understood!

Healing is taking place as I understand and adapt.

I realized the other day that I deserve huge credit for being a survivor!
How did I go through all of those things, and still manage to find sanity and be able to heal from that past?
It is amazing to me that I did not end up dead in a gutter long ago. I have been lucky and blessed in so many ways.

How many people in my age group will go to the grave blaming themselves and others and feeling pain with no escape, never knowing the answer to so may of their struggles is that one word, ”autism”. ???? My heart goes out to every single one , we all deserve to know the truth about our life long struggles.

Give yourself huge credit for finding ways to make it this far in life, even with maladaptive behavior and all the problems living without knowing our diagnosis can bring to life.
You are a true survivor!!!!

There is hope for a better future. Knowing about my autism now has been a really powerful tool, something of monumental importance – a key that opened up the insights and perspective I had lacked to understand my world. I can not begin to describe the importance this has had for me personally, and my world!

I have learned that for us, our autism diagnosis is stimulus to explore our personal experiences and traits, and at this old age, its a lot to sort!

I think I am still having those wonderful “aha “ moments of insight and understanding, and that satisfying opportunity to say “so that’s why” about still another part of my past or even my present life.

I have learned that nobody else is as fascinated or interested in my autism discoveries and insights, except other autistic individuals.

Even people who have children or partners, or other family members with autism are not as interested in the autism itself as in finding ways to work around its worst struggles. (the ones that are the worst for them, even, maybe instead of the experiences of the autistic individual in their lives).

Blogs, articles, chats, autism support groups both in person, online and using all of the features of today’s best technologies are the perfect way to share information and support each other in a world where nobody else wonders much about autism and how it affects 2 to 3 percent of the world’s population. I am so grateful for the internet!

The reason I started the blog was to explain for others my experiences in searching for diagnosis as an old lady here in the USA, my insights and the things I have been learning along the way.

In the past 5 years, much has been learned by science, with the general consensus being that autism is mostly genetic and it is developmental. The ways we struggle with autism is due to uneven growth and development of our neurology. Each of us will be different because no two neurologies develop equally . Performance on sensory tests and neurological tests show uneven performance, with amazing highs sometimes to really low performances in other sections of testing. The so called “autistic behaviors” are the direct result of our uneven neurology.

I wanted to show everything I was learning here in the blog to help others who have just begun to suspect they might be autistic as older adults, who are seeking diagnosis, who are recently diagnosed and looking for ways to make their every day lives better with self accommodation and seeking self understanding.
Everything looks different when we discover our autism.
Wishing all a Happy New Year. May the new year be your best yet!

Adjusting to Autism diagnosis

In our later years.

Recent diagnosis at any age can be a relief, a shock, cause emotional pain and distress, relieve emotional pain and distress, all of the above, or none. For each of us, our perspective will likely be changed forever. Things we thought we understood may change, as we begin to sort our long histories and pasts and make sense of many of the “whys” of the long lives we have lived before we ever discovered our autism.

Along the way, many of us may have learned ways to cope, adapted behaviors to survive and to get along, and many of these may not have been healthy! We may come to our recent diagnosis feeling overwhelmed, incompetent to deal with life and new perspectives our diagnosis might give us. That’s OK, and you can pretty much expect some form of all that!

The good news is that we can learn new ways to communicate and our diagnosis can give us tools and insights that might not have been evident before. We can figure out our worst struggles and find ways to “do life” in easier and less distressing ways, now we know about our autism.

I learned to communicate in healthy self assertive ways.
I learned to see when I was being “guilted” , “intimidated”, “manipulated” and how to set boundaries and protect myself against those behaviors from others.
Along with those skills, I also had to be taught to recognize “what is my job, and what is not”.

Let me explain. All my life I had been trained to please others. Frequently somebody would say “you made me cry” “You hurt my feelings” “you make me so angry”

See a pattern in those statements? The person involved is telling me it is my responsibility to make sure they are happy. That they do not have hurt feelings, that they are not “made” angry by whatever I do. Punishment reinforced this idea, that somehow it was my job to please and appease others in my household, or any other part of my world. I had that power! I had to control it, no matter what I wanted or how I felt, how I disliked doing whatever was asked of me. I must please the other people at any cost.
Now, of course each person’s experience will have been different, but I bet a lot of readers will relate to this experience on some level.

One thing that has helped me tremendously is to learn to recognize “things I can control” versus “things I can’t” . This has been surprisingly difficult to learn after the first 30 years of my life being indoctrinated to this point of view.

I started reading about control, about who can control me, (only me!) and who I must please (only me). things I can’t control include the weather, people’s opinions, disease, catastrophe/accidents, other people’s actions, beliefs, thoughts, feelings. OH? I wasn’t responsible after all when you cried over something I did and punished me over and over for it? OH? I was not responsible for the times you hit me because I did something that “made you” be angry? This was an extreme revelation to me… I had such a difficult time processing the fact that persons chose to respond to me and my behaviors in their own ways of their own choosing, and that I, in fact did not cause their hatred, their anger, their violence, their shaming, blaming, controlling behavior toward me. When people said I “should” do something, or I am “supposed to” do something or feel something, or believe something, I thought they had a secret manual or list of rules that I was not able to access. I believed that they were telling me rules I must live by, rather than understanding that these were things that THEY believed, things that THEY thought, things that THEY wanted from me.

Many of the ways we deal with our world are due to habit or learned as children to survive our struggles in “less-than-understanding” or healthy situations growing up. The ways we learned to protect ourselves may not work well for us as adults, but there are so many ways we can choose to behave in any interaction with others… we just need to find out what our choices are and learn how to use the newer and healthier tools we have access to as we discard our old struggles and make adaptions for ourselves as we age. It is Ok to reach out to a counselor or therapist or social worker to ask for help and explanations if you find it a struggle to sort all of this on your own.

Look for more information about healthy self assertive behavior, look for more information about things you can’t control, things you can, and learn how to tell one from the other. You may suddenly find yourself feeling freer than you ever have before.

When we are able to make our own choices depending only on what is right for us and be free of others opinions, feelings, agendas and wants, we are better able to have healthy relationships and fewer worries and struggles. Check it out!

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.

Autism Diagnosis can be life changing.

Approximately 6 years from my first suspicions about a possible diagnosis of autism, and 3 years from actual professional diagnosis, I am taking inventory.

How life has changed! It is difficult to be specific, since changes have taken place gradually as I learn more about myself, the nature of the neurology I have been given and how it has affected everything in my life from my birth onward.

Diagnosis first of all , self understanding of my autism, was a series of “aha” moments, small discoveries that added up to the conclusion that I was/ am indeed autistic began with those descriptions of autistic thought patterns, physical and emotional struggles with misunderstandings, misperceptions, and poor performance. One by one, the light went on. “I do that” “so that’s why” “Oh, that makes so much sense” as the series of autistic diagnostic criteria and discussions with others revealed details about the ways we experience our autism .

At first it was very difficult to understand that each of us experiences our autism quite differently, and that we experience certain aspects of “performance deficit” “problem behavior”
“processing problems” “brilliant and highly above average performance” in varying aspects of our lives. It was hard to figure out what I had in common with so many autistic folks on the websites with autism descriptions, on the blogs I read, on the discussion groups where people talked about autism in so many ways.

One thing that helped a lot was to try to remember all the problems I had in childhood. Misunderstandings, Hurts, discipline for being “bad” even though I never believed I was doing deliberately all the things I was blamed for, Problems at school, being bullied, all went under my mental metaphorical microscope to be examined closely. I came up with loads of struggles and hurts from the past.
This exploded to upsets of my young adulthood and right through my present day more recent problems. It seems certain experiences followed me right through my life, being uncoordinated, being bullied, making people angry without a clue as to why, diligent research and activities directed at specific life long interests (horses, humane issues surrounding domestic animals) super high word skills both in reading and writing, very very poor performance in other areas of life skills.

It started to add up when I was able to compare what other autistic folks described and explained as their autistic experiences. The diagnostic triad, social struggles, communication struggles, and rigid patterns of behavior and thinking added up to my own brand of autism once I was enlightened enough from painful search of my past to see it.

Suddenly I could see how autism was behind so many of the painful experiences of the past. Everything was not, after all, “all my fault” as I had believed in my soul… I had been told and punished for misbehavior, deliberately being bad, causing trouble, having disappointing school interactions and grades, being in general a nuisance and a problem which must be punished repeatedly and still failed to perform or conform. I was a huge disappointment, a behavior problem, a bad person! No longer!!! What a relief to finally understand how autism had its works in the past and nobody knew!

I have less emotional pain, since I learned how to sort old painful experiences that replayed constantly in my mind, causing anxiety and emotional upset over and over. I learned how to file such memories under “finished business” in my mind after sorting them from the new perspective of how autism had worked without anybody knowing or understanding. If there was nothing to be done about the specific painful memory today, it went into that metaphorical mental file. Every time that painful memory came back up after that, I simply stopped it as best I could and said to myself “that is finished business” and sent the memory back to the file. There is a detailed description of this process elsewhere in these blog pages.

I have been able to see how autism worked, file old memories that caused repeated pain (so many of them it actually impaired my life) and best of all I have been able to forgive myself and others for all those events because of course, nobody knew!!! Such a relief!

Knowing my diagnosis finally gave me the perspective/platform to see all those old events and the beliefs and emotions surrounding them in a new way. So healing!

Learning about my autism neurology, and finding my worst struggles, gave me the opportunity to think about how I could do the things that were hardest for me in new ways. I could adjust my activities, my surroundings, my ways of doing things to make things go more smoothly and be less distressing every day. I recommend that we tackle the very hardest and most painful things from every day life first, and as we realize we are stressed and distressed, continue to make adjustments in the way we do things for daily living, for special events in our lives, special projects or holidays, vacations, how we handle anything that is physically or emotionally distressing for us.

Having made many adjustments to my schedule, my activities, my social interactions, etc, I am feeling far less stress and anxiety, and finding more peace and ability to give myself comfort and adjust even small details to make life continually more “doable”. I don’t spend all my time worrying about “what if”. I am learning I can handle almost any situation I choose to put myself into and that my life will go on usually with no permanent damage if I make a mistake. ( that was a huge one! )

We can make so many choices over the way we want to “do life”. First we need to understand we do have that power within us, that we can figure out better ways to do almost anything. We can ask for help if we feel we can not do this part alone.

Others in your life may resist change or cause difficulties for adjustments we may want to make. Things can generally be negotiated and compromised and support can be gained, but it is unfair to make demands on others that everything in their lives must change completely as well.

Find yourself a good support group of older autistic adults, there are many many of them “out there”.
Ask for insights and suggestions about how others have solved problems surrounding their autism.
Ask first, if you need to, for explanations about whether the struggle you are facing is somehow common to other autistic individuals.
Forums are such a great source of so many years actual lived autistic experience and it is great to find out you are not alone, that there are others who actually understand!

I will not name support group forums because there are hundreds and the ones I like may not be helpful for you at all.

There are all sorts of autism support groups from age related, gender related, politics and social justice related, medical basis groups, and more.
I had to try maybe 15 or 20 of them before I found one I consider my autism home on the internet.

Make sure the group you join for support is just that, a social and emotional support group. There are information groups, study groups, news groups and of course thousands of blogs and social media pages. See which sort of group it is in the group’s rules and descriptions for best results!

There are chat groups, in person support groups, and so much more. You don’t have to do this alone, there are so many resources and options available. don’t give up, you will find something just right for you out there.

If you are just getting started, I wish you well on your journey of self discovery. Even after 6 years from my first self understanding of my being autistic, I am still having insights and learning new and better ways to do things. Even at this old age of 71, things keep getting better, less painful and upsetting and healing. I’ll be sorting the first 65 years for the rest of my life, but it has been so helpful to know. Diagnosis can be life changing. May all good things come your way in the impending new year.

Autism Diagnosis

What is changing today?

Changes are coming with science’s new understanding of autism.

No longer is autism simply about how individuals behave. No longer do all doctors and professionals believe autism is something that can be “trained” out of us!

Science and recent studies have continued to describe not only behavioral traits, but scope of intelligence, ability to process sensory information, physical traits, genetic backgrounds and specifics, gait, and science finally hit the jackpot when studies and scientists began to see that autism can be described as being a condition of uneven neurological development. Autism will be different for every single individual because each of our neurologies developed or failed to develop in different ways. Think about it! No longer will autism studies be based on finding key behaviors ( all autistic people use self stimulating behavior) ( all autistics struggle to communicate) “all autistic people think in pictures” No more assigning traits to all autistic individuals or looking for shared characteristics outside of unusual neurological development.

No longer is autism a mental illness which causes us to behave in odd or difficult ways.

Autism is now seen first as something we are born with, and not due to the way our parents treated us, not due to our traumas or our early childhood experiences.

The day is coming soon when those learning to diagnose autism will look for neurological signs… they will seek out sensory processing differences and difficulties and take a second look at those of us who continually or consistently out perform others in certain areas. There will be neurological tests for perception, sensitivities, sensory testing of all sorts (because all senses are based in our neurology).

Coming soon will be the removal of assigning of certain behavioral traits to all autistic people.

“Autistic people don’t look you in the eye” “autistic people can’t do things like have relationships, have friends, marry or raise a family” “autistic people all do this, or don’t do that” as signs of autism will be discarded in favor of testing sensory processing. Scientists or diagnosing professionals will be looking for signs of neurological struggles including any neurological conditions now recognized, such as epilepsy, dyspraxia, ataxia, struggles with balance and coordination, struggles with any sensory input and unusual presentation of sensitivity to sensory input or lack of sensitivity. We already know this varies greatly with each autistic individual.

Individuals will be assessed on their neurology and not their troublesome behavior.

I have recently learned that a few teaching schools (universities, colleges) around the USA have begun to have classes about adult autism instead of devoting only a page or two in a general medical text in specific studies.

I see this as signs of good things happening for many autistic older adults.

These are just stirrings and first movement… something I had never thought I would see in the very limited years left of my lifetime.

I find this very encouraging.

Autism Late Diagnosis

Adjusting to late diagnosis of Autism

Maybe I could be autistic? I might be autistic, I think I am autistic, I am autistic.

In all stages of exploring our diagnosis, things will never look the same. When we first suspect our autism all the way to professional confirmation, that yes we are autistic, we are growing, changing and adjusting.
Don’t be alarmed if you feel confused, lost, sad, angry, upset, relieved, curious, depressed, happy or anxious. Having lived your life knowing you are “different”, trying to understand how you seem to fail where others thrive, believing we are failures or worse because we have been told this as truth for our lifetimes up until now, finding out about autism turns our perspective on everything upside down.

We must sort every experience, every memory of bad times, confusion, sadness, anger in light of our new understanding.

We must figure out our mistaken beliefs and the way we see the world because knowing we are autistic really does change everything.
No longer are we to blame for our worst struggles, nobody knew about autism, nobody saw it working behind the scenes in our growing up, our young adulthood, our mature years and for some of us into our older retirement age years.

Suddenly we can see how so many interactions and frustrations, sorrows and anger are due to our autism and the way we process information.
Our neurology sets us at risk for poor social interaction, for misunderstanding, causes stress and distress.
Now we can forgive ourselves, nobody knew! We can begin to understand our neurology, what our true strengths and our worst weaknesses are and begin to find new ways to live that accommodates our struggles.

We no longer have to feel guilty because we can’t succeed at so many things others have expected of us.

We can have feelings of triumph when we figure out new ways to succeed when we allow ourselves to do things differently.

We begin to find our true selves when we let go of self hate and the continual struggle to do things simply because somebody else expects us to.
This is like entering a new and foreign territory. There are no maps, no guidelines, no explainations about “how to” go about sorting our autism as part of our newly understood identity.

We must find our way by doing lots of self examination, recalling the past, digging at old wounds and bringing them forward in our minds to see how autism worked in those experiences.
There is a lot of “emotional homework” sorting out past experiences and figuring out what “really happened” and understanding how our autism and our own behavior and responses to upsets and hurts had its way in the mix.

The older we are and the more self protective behavior, ways to cope, and attitudes we have developed, the longer it will take to unravel our experiences, have insights, see alternatives, and develop new and better ways of living.

Please understand that this takes time, might take the rest of our lifetimes to really thoroughly understand it all.

Please be patient and kind with yourself and others as you sort it all out. Expect to be upset, angry, anxious, feel relieved and joyous, depressed, sad, or any other emotions, in cycles for a long time to come.

Truly, diagnosis changes almost everything we thought we understood, knew, believed about our selves and our own lives, our experiences and our interactions with others.

Diagnosis opens doors to relationships, helps us forgive ourselves and also others. Nobody knew! It puts everything in a newly understood place and can change absolutely everything about ourselves. We might feel disoriented and question if all this new information, these new feelings, this new idea can be right.

New diagnosis is exciting, discouraging, fascinating, depressing, interesting, frustrating, and will likely bring about healthy and also scary new changes.

Do self care and have compassion for yourself right now. It is a lot to sort and process, it is a lot to accept. It is OK to have loads of feelings of all sorts, and mixed feelings too. guilt, anger, sadness, joy, excitement, relief, and so on are to be expected. Make sure you allow yourself enough time and self compassion, rest, do self care, take breaks from learning about autism if it gets overwhelming. There is no rush, we waited this long for diagnosis, we can take our time sorting out those details we need to understand to get on with our new lives from this new perspective.

Over time things will begin to change and we become more comfortable with our diagnosis.

I suspected my own autism about 5 years ago, decided for sure I was probably autistic 3 years ago, and got professional diagnosis 2 years ago. (today is December 21,2021)

I am still learning about myself, my past, and having those wonderful “aha” moments when yet another unsuspected insight into my autism and my life experiences suddenly makes sense and falls into place.

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.