Autism diagnosis for an Old Lady

My next attempt at getting a professional diagnosis is less than a week away.

I find myself very nervous, on edge, near tears sometime.

Summer is always busy and I have a lot to do. Maybe being busy is good because it keeps me from fretting, something I am very (very) good at!

I trust this doctor, and he has many years experience with autistic people. My husband will come with this time. We have been given a “homework” sheet to fill out and have been cautioned not to discuss it with each other. I think the Dr wants to compare our observations. Dr will also spend time interviewing my spouse. This was something that I was told would take place during my first “assessement” but which never happened… anxious about that too.

Almost everything I want to do from here onward depends on a positive diagnosis, and I have no idea what will happen if he gives me another diagnosis (schizoid has been suggested, but I disbelieve that).

Everything I have read about autism seems to fit my childhood experiences, my personal life experiences, and my work experiences.

I am no stranger to other diagnoses as there are others with those in our family… and our daughter experienced multiple diagnoses over the years until they ‘got it right’.

I do intensive research on any subject which interests me, and neurological brain disorders (mental illness and other associated conditions) has been one of my areas of study.

If this Dr says I am not autistic I will be devastated emotionally because I already identify as autistic and I know it will upset my self image… which already happened with the first “assessment”.

I am so concerned that many older adults are being missed, and misdiagnosed as having other mental/neurological conditions. Particularly women, who are likely to be diagnosed as one in 143 cases, as opposed to one in about 50 in males.

Women simply show our autism differently, or are more adept at hiding our struggles.

So many doctors here in the USA have no understanding of autism, even neurologists and psychologists . I hope by gaining credibility with a professional diagnosis that I can further interest in late diagnosis of adults.

The ironic thing to me is that so many of the professionals we are depending on for diagnosis and self understanding are mostly not trained to understand us and give those very diagnoses.

Autism Diagnosed late in life

When I first started writing here, I could only find a small handful of elderly

autistic adults who were writing… elderly being subjective… there were several authors

in their mid 40’s, one or two in their early 50’s, and none over 60.

I have been giving consideration to whether having self diagnosed (still chasing ‘official’ diagnosis, one of the subjects of this blog) my learning of my autism has changed anything? Has knowing about my autism changed a thing?

Many people have asked, what good does it do, to have a diagnosis at this age?

I have to admit that it doesn’t change my disabilities or handicaps, not one bit.

I still struggle with all the sensory processing issues in the same old way.

I still suffer emotional distress, still struggle to understand context, intent, and other issues involved in any social interaction.

What has it changed, this knowing after all these years that i am autistic?

It has changed my outlook and my attitude. I no longer see myself as hopelessly inept.
It has allowed me to forgive myself for all of my weaknesses.

I now know my failures are a side effect of my sensory struggles, and not a moral weakness or a lack of inner strength, a weakness of character.

I am beginning to understand my strengths and the way my own mind works.

I am beginning to understand so many things that I misunderstood because of my not knowing about my autism and my lack of insights in so many parts of my early life due to a complex mix of family and social issues during the time I grew up.

I have been reading and learning for almost 2 years now, intently and for hours almost every day.

I finally am beginning to understand how difficult my life is and would have been under any circumstances due to the autism. I knew it was difficult, but now I know why, and I can congratulate myself on coming so far with handicaps nobody understood, rather than punishing myself for not measuring up in so many ways. That alone has been worth more than anything else! My self image is more in perspective with reality.

My self worth is now visible. I had never valued my existence or seen myself as other than undesirable, unworthy, a failure, a burden, an affliction to others. Autism with its rigid perceptions and inflexible rules had me caught in believing things I had been taught about myself from an early age without being able to see beyond those early ideas.

Knowing about my autism, that I am not to blame for all of the things that troubled me and troubled my family and associates, and knowing that others did not know either, answers almost every “why” I suffered with for so many years.

It has allowed me to move on to learn about and understand more about myself than I had ever understood before.

The answer of knowing it is autism is an explanation, not an excuse.

I am responsible for my own behavior, beliefs, morals, values, actions and reactions. I have made some terrible mistakes, terrible choices, in my past. I will continue to have failures in the future.
If I have successes it will be because my knowing I am autistic has not changed my disabilities, it has actually sharpened my understanding of these, but it has also allowed me to understand myself and the reasons for the results of so many issues of the past.

Diagnosis of autism will help me understand better ways to go about dealing with things in the present and in the future. I have new insights from a totally new perspective. I like this side of autism much better than the place I had been for my first 65 years. What a relief to finally know and understand!

I hope more autistic folk of later years ( old people like me!) can find answers to the questions of their pasts and have the relief of knowing that autism explains so much.

In the near future I hope to put together a short description of autism in older adults to be distributed to medical facilities, public agencies of all sorts- nursing homes, senior center,homeless shelters, library, etc. to help people consider autism as a diagnosis in struggling populations. Still working toward an official diagnosis, anxious to get to work.

Emotions and Autism

Sorting or recognizing emotions is something not addressed too often in discussions about autism, yet I see it as being one of the most troubling features of my autism for most of my life.

I am not sure how my emotions got so tangled. How much was due to the dysfunction of our family, and my position in the dynamics? How much was due to the autistic inability to recognize the emotional state of others? I was dependent on others to explain the world to me, and for the most part the explanations I got ( or at least the way i understood the explanations- which were few) were wrong. If I assimilated the explanations I was given and applied them, it ( my perceptions of these explanations ) just dug me deeper into confusion. I really had no idea about emotions, how to identify them, and what they actually meant.

Autism confused me further… when I believed I grasped a concept or a rule, inflexibility did not allow me to see I might not have understood “the rules” after all. I held that rule fast to my heart and mind because I understood somehow that there were rules and I needed to follow them, and the better I learned the rules, the less trouble I would be in, the less angry people would be with me, the less I would be scolded or spanked or scorned or ridiculed. There was safety in being able to cling to a rule. Of course my autistic perceptions were inaccurate, and incomplete. My understanding of explanations was literal, my concepts of ‘the way the world is” were drastically skewed.

So it is no wonder that the world of emotions, which I did not perceive in others until i brought their wrath down around me, was left behind in my search to understand how to avoid the complications by learning the rules. My emotions were not useful, other’s emotions were not clearly understood and the dynamics of what things activate emotions was for the most part very unclear to me. I was told over and over that I was rude, unfeeling, selfish, thoughtless, etc… but nobody ever explained in what ways or how I was ‘being’ all of those things. I was told over and over “you should know”… but that did not show or explain to me how I “should know”, nor yet the specifics of what I “should know” and how to apply that knowledge to whatever situation it was I was in that got me into perpetual trouble.

It was not until I became suicidal and finally found a good counselor that I began to figure out emotional dynamics, both other people’s and my own. I had no idea I was autistic at age 30, that understanding finally arrived at age 66, but mean time the therapist I worked with was able to point out several misunderstandings in my thinking. He taught me to be healthily self assertive… but before I could be self assertive, I had to know what I needed and wanted. I had always tried to please others and appease/prevent their aggression and anger, but never had looked at trying to figure out who I was or what I needed, what I thought about any topic, what I wanted. I went from such family dynamics into a married state that duplicated the patterns at home, only perhaps escalated the severity of the problems in patterns that existed. During that time the therapist encouraged me to write. I had been in the habit of writing long apologetic letters to people whenever they were upset with me. The therapist somehow could see that for me the written word, and writing was my best form of understanding, communication, and self expression.
He assigned me books about making healthy choices and how to have effective and healthy communications to read, and asked me to write about my problems.

This was such an illuminative experience! What most people probably learn in their early teens, I was learning for the first time as a 30 year old adult. It was freeing! When I read back the things I wrote ( I wrote letters which i never sent to the individuals who I had struggles with) I began to understand what my problems were… and the therapist was able to point out how I could choose to respond in different ways to those problems.
Among other things, I had to learn to recognize anger in myself and to express it. I had to learn how to say NO to people instead of bending over backwards and going far out of my way to please them. Family member or complete stranger, I was the servant and the doormat and the “please don’t be angry or aggressive with me, I will do anything to avoid that” person. Think of Archie Bunker’s Edith and you will have a small idea.
I still have to resist this tendency in every day life and measure in my mind exactly what is reasonable and sane for me to do as opposed to simply responding with”yes” to avoid any discomfort.

I had to learn to recognize frustration, sadness, shock/surprise and understand how these emotions could be acknowledged and expressed as well.

I learned communication tools and how to use them. I had empathy/sympathy when others’ pain was explained to me, but had (and still have) struggles with recognizing distress or anger or other emotions in others.
I am better at trying to put myself in people’s places , endlessly comparing in my mind their current experience to any previous experience I may have had to get a clue to what they may be thinking or feeling as I interact with them.

This seems to be something “neurotypical”( non autistic) people know without working at it, they are able to perceive emotion and understand its significance as if by instinct. I still am not good at this, but I have better skills with practice 37 years after the counselor than I had as a child and young adult.

In struggles for everyday function, my emotions tend to get shoved to the background and not recognized or acknowledged until they build into ‘overload’. Then it all comes out. I have got much better at recognizing the first hints of emotions in myself and paying attention to them, and if and when I can do that, I might be able to better respond to a situation instead of its building until I fall apart.

I have to say that going to that therapist was the hardest thing I have ever done. It was also the best thing I ever did in making my life better and easier for myself. I have so much more understanding than I did before.

I have lived with fear and anxiety as being my 2 predominant emotions for most of my life. Certainly in those days, they were the only emotions I deeply experienced on an every day level. Never knowing when you are going to get punished for ‘doing wrong’ and never knowing when or understanding why it happened are powerful motivators to be anxious and worried. As I have got more practice and made better choices , and now especially since I understand that my autism caused so many misunderstandings, and how that worked, my anxiety is leaving me, and I am rarely bothered by depression.

I think both anxiety and depression were because I was helpless in my former roles with no way to avoid the emotional and physical pain.
I learned how to recognize my emotions and how to change my behavior patterns by making better choices. But first I had to recognize that I had the power to choose.

Autism strengths

I’ve written a lot about struggles in autism. Those are ever present and they are real. Something perhaps less understood are some of the strengths or good traits often found among autistic people.

Powers of observation and pattern recognition are very strongly oriented toward details in many autistic people. Neurotypical/average everyday people tend to see the big picture immediately and to add details once they perceive the concept. Autistic people tend to focus on the details and add them together to build the entire picture from assembling the details. This probably takes longer in most cases, but knowledge gained seems to be in depth and thorough. In this, we are able to spot things that ordinarily might be missed. Troubleshooting of all sorts is appealing because it involves solving a puzzle. Most of us are inordinately curious. “Why” is almost a mantra for most of us. We want to pick things apart and understand the least/smallest things about them. Many autistic people love the challenge of sorting out problems. Many of us have excellent long term memories, many are able to visualize concepts in a very detailed way. We also are known for our “perseveration” which can translate several ways… continual interest in something, continual ‘working it over in the mind’ on issues long since past and over, and in super ability to focus on one task and stubbornly follow the course set ( our son says I am willful) until the goal is accomplished. Indeed we can be extremely single minded over ideas and perceptions. This is not to say that all of us (autistic folk) are like this. Some of us do not have a single one of these traits (gifts, or curses). I am not able to visualize a thing, for example. We might make excellent researchers, engineers, IT workers…librarians, accountants, math related, mechanics, electricians, any place detailed analysis of anything is needed, autistic attention to detail pays off.

Most autistic folk are extremely compassionate and care deeply. This seems to fly in the face of the autistic stereotype often discussed as unemotional and cold, unresponsive to others needs and uncaring. The stereotype is simply not true! The problem lies in perception of emotional issues and perspectives… if we do not perceive distress in others we do not react to it. If it is explained why distress is experienced or pointed out that a person is upset or emotionally hurting, many autistic persons will feel very deep emotions and empathy/sympathy. We often do not show our emotions, we are simply not ‘wired’ to make emotional displays under most circumstances. This seems to be something that comes naturally and spontaneously to neurotypical people.

Because we may not show/express our emotions on the outside, it does not mean we do not feel them within. Autistic people can feel quite passionately about today’s issues and will persist in championing a cause with heart and soul.

For many autistic people, reason and facts dominate emotion. This means we may not respond in the usual emotional (distressed, panic, fear,anger, dismay) fashion under stressful conditions, such as emergencies- fire, accidents, injuries, crisis situations. We may be able to more quickly see the details in what has happened and what needs to be carried out immediately without the spontaneous emotional response typical in the average population. For this reason we may make good workers in the medical professions, especially rescue and emergency doctors, nurses, EMTs, fireman, etc. .

Again I would like to emphasize that these traits are not common to all autistic people, just as traits, skills, gifts, or abilities of any person will vary, so do those of autistic people.

Autistic Anniversary

Happy anniversary to me!

About this time last year I was finally certain I am autistic.

I joined several online autism groups and began asking questions.

I was amazed as I discovered so many things I struggled with were “like that” because of autism. I am still learning about ways I have been affected, and each time for just a few moments I wonder… what would I have been like, who would I have become, if I had not been autistic?

Other older people have commented that getting a diagnosis nearer the end of your life than the beginning is a shock. Many have compared diagnosis at this age (I was 65 when I first suspected I was autistic, and age 66, when I was certain.) to the grieving process.. Shock, denial, bargaining, grief, anger, acceptance. I have now completed my first full year of knowing my diagnosis. I have gone through that cycle over and over.

It is popular in some autism circles to speak of autism being a gift, or simply another “operating system” rather than a handicap or a disability. I am firmly on the side of its being a disability. I have struggled with too many things in life that would not have been a struggle had I not been autistic.

Painful interactions with others top the list. Had I understood emotions, my own and others, and understood that I causing pain to others, had I understood that any correction or misunderstanding on the part of others was not a mortal mistake and been able to accept that, offer apologies and move on, much suffering of others and my own would never have happened. Perhaps I would have had friends and fewer failed relationships, and not always have been in trouble with people at home, in school, at work. Perhaps estranged family members would not be estranged. Perhaps my first marriage would not have failed. No way of knowing for sure, but perhaps.

I might not have gone through life afraid. I might have gone to college, might have had a profession. Alas, all too late.

The Best thing about finally knowing I am autistic is that now all of that other chaos and pain in life finally makes sense. I finally “get it” and can see how autism has affected every day of my life, and how it still affects me.

The huge difference is that now I can forgive myself and others, now I have a lamp in the darkness, I can see how autism surrounds me and encloses me, and also now, how I can smooth my own path and use new ways to survive and even thrive.

The growth this year in my personal understanding and the relief I have in finally knowing about autism is boundless. So many formerly impossible things are understandable and manageable in context of autism. So much that was perplexing, confusing, frustrating, and depressing is now understood and outcomes of any activity attempted are not presumed to be inevitable failure. What a relief to know about autism and that I have so many “new to me” options and outlooks!

Second Phase first attempt at diagnosis.

Having left the follow up session in absolutely stunned confusion, being told in no way could I have autism because of my ability to communicate, hold a job, be married, and be aware of having been bullied all my life… (autistic people don’t do that) I was both shocked and simultaneously frustrated, disappointed, and dismayed.
I was just sure that the answers he gave about my autistic state were wrong… I knew that autistic people could communicate, could work, could have relationships, and could know when they were being bullied. The ideas the Dr quoted to me were from the late 1960s when diagnosis criteria were completely different. Still I questioned everything about my life up to that point… could I have got everything that wrong? How else could “everything” be explained, especially with the alternative diagnoses he saddled me with at that point. ??

I began to think about how to handle what I thought was a completely unfair set-up, where I was assured the doctor had much experience with autism, and in the end finding out he had never diagnosed a single person with autism.
I first sent him a letter (depending on his assurances at the exit assessment meeting that I could, and should, contact him with any questions once I received his written evaluation). Then I emailed him when there was no response. In both communications I requested further appointments to discuss autism, referring to the appointment desks’ original assurances that he was experienced with autism and diagnosis.
Barring more appointments with him, I asked for referral or joint or referred individual sessions with any child autism specialist in his practice- none of the others were willing to accept clients over age 18. (he is head psychologist over about 30 others, counselors and many specialists listed for autism, which was the reason I approached this clinic). It was listed as an autism resource on the “Autism Alliance” page I found on the internet.

No response for a month.

Next step was to contact “Autism Alliance” whose page clearly states that they are advocates for autistic people…. I thought they might like to know that the clinic they recommended was not helpful for people over age 18 and told them of my experience. Two things happened after my email to them… The next day I got an email from the Doctor saying he could not help me. I also got a phone call from Autism Alliance saying they had never had a complaint before, and that their providers were all carefully screened. Then they told me they would be glad to advocate for me and help me find another qualified provider who would be more helpful. I felt as if I had been heard and since they posed as advocates, I did not suspect what would happen next.

I got several phone calls and emails from Autism Alliance, all saying they were working on finding me a follow up counselor with autism experience who would work with me. I was gratified and felt assured the issues would be resolved and I would get a good psychologist. I was assigned my own personal “navigator” to help me find my way through the system.
They turned out to be a predatory insurance sales group who were looking for any psychologist or therapist who would take me on for a percentage of the referral fees.
It ended up that they tried to hook me up with one counselor in my area who would think of this idea as acceptable, a woman who only recently had renewed a lapsed “counselors” license which was either expired or suspended after a couple of years of practice as an infant therapist/art therapist, and who had a sociology degree.( the internet is amazing, all the things you can find if you dig around for a while!)

Insurance was not able to cover visits to this woman at all, but the navigator pressed hard in phone calls over several days. I would have to pay cash but I could get a discount! At this point I realized they were not looking out for my interests at all, but were “insurance navigators” who were in the business solely for profit as getting a cash percentage fee for referrals of any patients. There seemed to be no concern at all about fitting my needs or conditions, but they pushed me, “reminding” me that the diagnosis which the other doctor had given me recommended how much I needed therapy and that I should go!!!! ( it seems as if they had forgotten that his diagnosis was in dispute!) At this point I was alarmed as well as angry!

No thank you.

Please educate yourself about “insurance navigators”, who are definitely “for profit” groups which perhaps may do good for some folks but who were a complete disaster for me. In this case it appears their agenda on the website was quite hidden… and the thing that helped me is because I did not immediately assume they knew what was best for me. I knew the thing they were pushing me to do was not what was right for me, and I questioned why they were doing it. A little belated research and I had the answer.

I told them I no longer needed their services, that I had been able to find what I needed and thanked them.

After a couple more emails and another phone call, with my firmly repeating that I no longer needed their services, they subsided.

I count this a lucky escape, and warn others needing medical help of any sort to be alert when you hear that word “Navigator”. When I once again gather my emotional resources and quell the anxiety this brings to me to re-live it all, I will continue with the ‘next chapter’ in my search for diagnosis.

RECENT DISCOVERY

RECENT DISCOVERY

I am taking a break today from telling about my attempts to find a professional diagnosis and instead tell you of something I discovered last night. I have been interested in social struggles with autism and yesterday I was reading the 2005 book “Unwritten Rules of Social Relationships” co authored by Temple Grandin and Sean Barron. I hope to improve my social functioning.

Each author takes a few pages at the beginning of the book to relate personal social experiences and comments or insights about social interactions. I have a very difficult time relating to Dr Grandin, since she sees/processes everything so visually and I struggle to understand many of the thought processes she explains. I can only imagine the way she thinks, since I can not visualize at all. ( aphantasia).

I was stopped by this sentence in her comments, however.

“For some kids coming to the realization that making mistakes is okay, or that errors have different levels of importance, is difficult and pervasive and impedes every aspect of their functioning, especially in social situations”

Stopped? No, I was stunned! Of course, now it is obvious, but it took another person to point out the obvious to me once again. It is downright profound in its application to my own life experiences!

I had believed well into my 20’s that I had to be careful never to make any mistake. I was told over and over I was bad and wrong and was punished for any error , and I believed wholeheartedly that I must never make mistakes. It was too emotionally and physically dangerous. I was always upset, nervous, fearful, worried deeply about being “caught” being wrong about anything; it truly did very deeply impede all aspects of my life. I began to unlearn this over the next 40 years, but have never completely lost the anxiety over the unforgivable nature of making mistakes of any sort.

” OH”, the metaphorical lighted billboard in my thinking processes said at long last,

” THAT WAS AUTISM!”

Rigid thinking developed probably before I could even use words… “if I make a mistake I am in danger… I must not make mistakes, must not do the wrong things”, later, “must not say the wrong things”… autism! It was AUTISM!

This added 4/1 2019 to the original post. Somebody sent me a message and scolded me saying my fears had nothing to do with autism, since the idea was probably taught to me. I agree, this is something I learned, but where autism kicks in and is a very real part of my struggles is in the perseveration, the continued rigid thinking that held me in that pattern for over 30 years… my 3 siblings had it figured out before they were out of middle school, but I persisted in being able to see only that original belief in the same way. THAT is the part that is definitely autistic. It is failing to recognize the differences that others might see at once. I ended up getting some very good counseling that showed me I had other options besides those ‘rules’ I grew up with, and could make different/ better choices regarding many things. If I did not make it clear in my first post, let me make it clear here, the autism interference came not in the belief itself but in my rigid thinking surrounding the belief and the inability to independently deduce that I had many options and that there are ‘shades of gray’ in almost every aspect of life. My autistic black and white thinking could not change until somebody helped me see what was obvious to almost any neurotypical person.

I have been very sure of my autism for over a year now, but having lived 66 years never knowing about autism at all, you can understand there is a lot of deep questioning and processing going on.

I spend hours daily reading autism blogs, books, participating in question and answer sessions on ” autistic only” forums… It is always gratifying when I can look at something from my past and see how autism was involved. Finally after all these years to know and understand so many things after so much anxiety, depression, distress and dismay. Autism once again had its hand in my thinking and the way I understood (misunderstood?!) my world and things that happened in it. What a relief to know and understand!!! I got the book in an attempt to learn more about social interactions. That gem was planted in the pages of the very first section. I can’t wait to see what else I learn!

Before I knew about autism

It never occurred to me that I was having struggles that other people just did not have. This is a paraphrase of a well known quote by Alis Rowe.

It was always obvious that I was different, awkward, socially unacceptable, uncoordinated, “clueless”.

I blamed myself, and others did too, for my multiple failures to succeed at so many things that seemed simple to others.

I felt enormous guilt and shame because I was unable to “get it” about so many facets of every day life. I was scorned and punished, bullied and belittled because I simply could not (and people thought ‘would not’) behave in ways they expected me to. I simply had no idea how to do what they thought i should do. I can remembering being told over and over to shape up, to wake up, snap out of it, get with it, to stop feeling sorry for myself… to pull myself together, and I can remember wailing “but i don’t know how”.

Since I learned about my autism I have learned that it is my neurological ‘wiring’ regarding sensory processing which is what makes me different and accounts for many of my past struggles. Every autistic person is different, and struggles with sensory input to varying degrees.

What I describe as true for me might not be true for others. I believe this is one of the reasons it has been so hard to pin down exactly what autism is/does and describe it (autism and its ‘symptoms’) so that it can be recognized and diagnosed, helped where needed.

Sensory input is the way we relate to the world, the way we interact with each other… if one or more senses are skewed or how the processing of the input offered differs, it can throw off our understanding of the world. Things that are obvious to most can be a complete struggle for understanding in an autistic person. Our processing is often different.

If you are autistic, or know or love an autistic person, do you understand how you and or they process information and what their specific struggles are? I am going to list what I have learned about my own processing struggles. Each autistic person will have strengths and places where they struggle the most. I was completely unaware of how I struggled, in what ways, until I began to learn about autism.

Some of the things I describe here are not directly related to autism through scientific studies, but have been casually observed to be common in autistic populations. I list them here because they are still ways I struggle with sensory input. Each autistic person’s list will vary.

I am first of all unable to visualize in my head. I see no pictures there at all whenever people are talking, I can not visualize what they describe. I have an imagination, but it does not show me pictures, and it relies on things i have experienced or otherwise stored in my memory to help me understand. This condition is called aphantasia and is present in about 2 percent of today’s population, both autistic and non autistic. It appears to be random or possibly genetic but no link has been made to autism at this time. However, if you ponder a few moments you will see how this might change the way I process information I receive through eyesight.

I have prosopagnosia, the inability to recognize faces.. I may know you from every day interactions for years and still not ‘see’ you on the street. change hair style, glasses, wear a beard or mustache since i have seen you last and i will never find you!

I had a neuro-psychological test not long ago which confirmed that I have difficulty processing visual things. Videos, TV, Movies, Lectures, Presentations, and so many more things which you see every day are difficult for me to comprehend . I have difficulty learning from visual demonstrations (at work or in the classroom etc) I can look at still photos, illustrations, maps, and the printed word and process them easily. It seems to be things in motion that confuse me and happen too fast for me to understand readily. No fast action sports or games for me! I was the kid they threw the ball to so they could watch me fail to react soon enough and get hit in the face. Very funny! I have difficulty judging the speed of oncoming traffic, for example. Anything done at speed worries me to say the least. I just can’t process it fast enough.

I also have problems following spoken word. No radio, no vocal songs, no narrations or reading out loud… difficulties in the classroom, difficulties with instructions in work situations, difficulties in any conversation… can you imagine what it is like to struggle to comprehend most things around you as they happen? My range of hearing is normal to sensitive, being able to hear higher vibrations and lower ones slightly wider range than average. I always wondered why I liked instrumental music so much better than music with vocal parts, especially women’s …. now I understand that it is because I have such difficulty understanding and processing the words involved.

Long before I knew I was autistic, I figured out that in many situations I needed somebody else to explain to me what was happening or to explain when the event was over: “what do they mean by that”?
I have frequently told people that I need to have things explained to me where others seem to know by intuition or some other means that escapes me. Learning about my autism explained that too!

I talk a lot about what an autistic person does not do well, but very little here has been said about what strengths we have. My tests showed (and I knew before- from experience and learning on my search for information about autism) that my greatest strength lies in the written word. I have good spelling and comprehension, vocabulary tests are well above average. I have a gift for words!
Reading has been the key to my personal understanding my world, and I learn best through printed matter. I have spent most of my life trying to obtain information through the format of print.
The internet has been the most powerful influence in my life since books.
For those of us whose world is opened through reading, to understanding, it is a great gift of a magnitude which I am at a loss to explain.

I don’t have to look at somebody and be distracted by their movement, clothing or appearance while trying to understand what they are talking about, struggling to interpret their body language, their tone of voice, and interpreting their motivations, demeanor, inflections while simultaneously trying to sort the information they are presenting from the other conversations, background noise, activities, etc. I can read what they say and understand perhaps with a few questions exactly what they mean. It is a miracle!

My feelings of touch can be hypersensitive, especially to others suddenly touching me in any way ( perhaps a conditioned response). I hate little stickery labels, pebbles in my shoes are intolerable, as are clothes that cause discomfort. I dress for comfort and not style. I seem to experience most other sensory input in an ordinary or average way, appreciating comfort or discomfort on ‘normal’ levels, except that I seem to have a very high tolerance for pain. Sense of smell and taste seem to be “normal” in range .

So that is the struggle I have to live in everyday life. Not “poor me”, simply an explanation and no excuses… but understanding ‘why’ life has been so hard for me in so many ways has been explained by understanding how presence of my autism has affected my life. My understanding comes with new awareness of how my autism also affected my behavior to others and their perceptions of me. Each autistic person’s inventory of strengths and weaknesses will be very different. Many experience the world through mostly visual means, but please understand the fact that we struggle many times to know and understand things that seem obvious to others. Knowing about my autism will now allow me to better adjust my behavior, deepen my understanding, and give me insights into so many windows that were closed to me. I would love it if I could somehow present the self knowledge of autism to those who have yet not discovered the key to understanding their world lies in that one word. Autism.

Autistic Meltdown

Have you heard about autistic meltdowns? Most people are familiar with overload breakdowns and tantrums from small children. One stems from simply being unable to handle a situation, causing a falling apart and lack of self control. The other is a willful and defiant manipulative technique where the person having the tantrum attempts to gain control of a given situation, or other people, usually trying to change the outcome of some situation which is not to the tantrum-giver’s liking.

It might take a bit of close examination to discern the difference.

Because people with autism can have our senses and emotions overloaded more easily due to struggles in processing, autistic meltdowns are not uncommon. When a person can not quickly process events, deal with unwanted noises, lights, touches, or emotional feelings , we will generally deal with this by wanting to escape. People under other peoples’ care or control (children for example) may not be listened to when they exhibit signs of distress, ask to leave a situation, or try to protect themselves from too much input by covering eyes, hiding, covering ears, etc.. Stimming( self comforting behaviors) much more heavily than normal, rocking, pacing, etc, showing restlessness, anxiety, all can be signs of impending meltdown , but could be helped by removing the individual from whatever is causing the discomfort and distress.

The second stage, if the distressing overload of senses or emotions is not escaped, is to shut down. I should say that this could be momentary or of very long duration. I call this ‘deer in the headlights’. The individual is not able to take in the input overload and freezes, unable to respond. I will react like this when suddenly called upon to answer unexpected questions, when suddenly facing danger (like an oncoming car, impending or looming interactions I feel helpless to deal with) If input continues and the individual is unable to deal with things (unable to understand what is expected, unable to defend oneself verbally or physically, is overwhelmed by senses or emotions of any kind due to inability to process quickly and to think of ways to react, etc), Meltdown happens. It is loss of all self control, shown by falling down, throwing oneself around, hitting oneself or others, pushing, struggling, screaming, crying, or otherwise having complete inability to act in any way to help oneself or to interact with others.

Some people simply shut down and remain locked into themselves , withdrawn from everything and everybody around them.

Eventually the person loses energy as the frustration, fear, anxiety, distress, emotions are released. I think of meltdowns as similar to an overloaded electric circuit.. if one tries to send too much electricity ( information, emotional or sensory input) and the board (ones brain in this metaphor) can’t handle it, it blows a fuse or otherwise discharges the surplus energy. Meltdowns are never purposely performed, as tantrums are… they are spontaneous and very different from individual to individual. There is almost always embarrassment and shame, it never having been the intent to cause trouble or make oneself a spectacle. Recovery from a meltdown can take hours or even days, or only a short while, depending on the individual and on the quality of support they are able to access.

Autistic adults report that differing things help in different stages of meltdown. If they are listened to and allowed to leave when they express discomfort in any situation, many meltdowns can be avoided completely. Some will want to have dark and quiet, some will want to walk or run. Recovery often involves hiding in a dark and quiet safe place, some people will sleep for a long time and feel better when they wake.

There is not a lot known about the physiology of autistic meltdowns, but it is very definite that it is never intentional and never to gain control of another person or situation.

If you see an older adult and you think they are having unseemly tantrums, and behaving badly, look at it from the lens of autism. It could be meltdown.