Learning about Autism

Where do I start?

What if you have just started thinking you might be autistic? How do you go about finding out?

Lots of us muse and speculate, remember, sort and mull ideas, emotions and information we already know, or think we know before we decide to take a closer look to gain deeper understanding. Some of us never get beyond the “what if” stage. That is OK.

For those of us who want to know more there are thousands of pages of information and thousands of hours of podcasts and videos or other visual media available. There are at least a few hundred books, articles, blogs and pages about adult autism available today.

I just jumped in and began looking for information from all of them. Since I am most comfortable with books, I started there, looking for “training wheels” sort of “beginner” books with simple basic information about autism.

I soon learned autism is a heavily divided and contested topic, with many very strong opinions “out there” trying to shout each other down and to claim their way to address autism is the best or only way and to attempt to erase other ideas or positions, opinions or outlooks.

Each of us must form our own opinions about the politics surrounding autism.

I looked first for very basic information. I quickly learned about false information and controversial “cures”.

Be skeptical when you start learning, question everything and see if claims hold up in the light of other’s input.
Look at all possible sides of claims and opinions expressed and use your own judgement.
I did not suspect all the surrounding political and unscientific hooey that I would find.
Being aware it is “out there” can help sort fact from fallacy. Don’t take anything at face value. Look for studies, documentation, references, links that agree and back up claims.

Start by gathering basic information about the nature of autism, how it works and expresses itself in individuals, watch for ways which you might have experienced some of the autistic struggles and differences described.

Most of what is written about autism is aimed at children and at parents. With this in mind, I found it very useful to look at my own childhood/growing up and to compare my experiences with descriptions made on articles addressing childhood autism.

You may find many of these before you find the 400 times as rare articles on older adults and autism.

There simply has not been interest in older adults having autism until very recently. There are a few on line forums for autistic adults. There are articles addressing “late diagnosis” of autism. These articles are generally by 15 to 30 year old individuals! The information and insights in them may be helpful to you none the less.

The pages here are intended to help those older adults new to the idea of autism find basic information all in one place. There are online forums like this and also several other blog pages which have insights and information as well.

If you prefer to view information or listen to it, there are podcasts and videos available too.

Once you have basic information you will have loads of questions. Getting more input will usually answer most of these, but I found that joining a group page where I could ask specific questions about autism helped me tremendously.

I got a lot of “whys” answered by others who shared their experience and insights of being older autistic adults and having been diagnosed or self identified for much longer than I was.

Getting input and building an information base and a foundation for understanding was the first step. I think it is good to continue to seek out new information and more insights as you grow in self understanding and begin to sort your past with new perspective. If you are like me, you will be so interested as you go through the process, that you will keep seeking more understanding. So many “whys” of the past answered, finding “how to” is so helpful!

I am about 6 years in from my first “I wonder” thoughts through diagnosis 3 years ago. I am still having “aha” moments as I learn more about autism and remember things from my past experiences.

Things keep getting better. I’m here cheering you on as you begin your journey, knowing the information you obtain now will be useful for the rest of your life. You are definitely not alone!

Misophonia and Autism

When little sounds drive you wild!

Misophonia is a common sensory processing struggle. It happens to individuals outside the autism spectrum too. https://www.webmd.com/mental-health/what-is-misophonia

Recent studies, as quoted above show misophonia is a sensory processing disorder and most likely neurological in nature. No wonder Autistic individuals seem to experience this struggle more frequently.

The drip drip drip of water from the tap into the sink, the mouth breathing or open mouthed chewing of somebody across the room from you, the tapping of a branch on the window, or the clicking or tapping from toes, a constantly barking dog, anything can be the focus of this deeply frustrating processing disorder.
we can become anxious, furious, and even outraged at the percieved intrusiveness of the triggering sound or sound. This is not helpful to having good relationships with others, from co workers, peers in social situations, to members of a family. Misophonia can be very upsetting not only to the sufferer but to those around them who can become the focus of the rage and frustration involved in a triggered event.
There are things that can be done to address misophonia and to help sufferers cope.

One can use “white noise machines”, a safe space where the sufferer can retreat to avoid the input that upsets us, headphones with music or soothing sounds, some attempts have been made to de-sensitize through longer and longer exposures to the upsetting sounds, and using Biofeedback might help in some cases.
Occupational Therapists may be able to help, depending on their specialties.
Misophonia is rare enough in the general public that many Family Doctors have never heard of it.
If you struggle, you may ask for a referral to a neuro psychologist or other specialists. Please don’t hesitate to reach out to find ways to help and to make self accommodations to protect yourself and those you care about from the effects of misophonia.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4547634/

Autism bridges

building a bridge for better communication

One of autism’s primary struggles is with communication. Because of various struggles, visual, audio, and other processing weaknesses, we often need help to make connections in things we are being told, taught, participating in, observing or planning. Communication struggles generally don’t allow us to “get the idea” and then fill in the details. We need the details in order to understand the idea, or the “big picture”. This may not be true for all autistic folks but it surely is true for many of us! Neurotypical individuals have conversations using leaps of understanding, intended inferences, references and nuanced speech which often leave people like me with low percentile hearing and visual process functioning far behind. I simply “don’t get” hints, allusions, or vague references to metaphors, comparisons for contrast in sarcastic quips, etc.

I was talking with our daughter in a stressful situation a couple of weeks ago and I had to ask for her to clarify something she said. I often interrupt if I don’t understand, and some people find this extremely annoying, but daughter and I usually communicate very well and she is patient with me.

When I asked her about the context of her last comment, she said “OH, I forgot to build a bridge for you”. The meaning was clear, she had been intentionally making connections for me to follow in our conversation. The idea delighted me and moved me deeply. And I loved the easy description of the verbal practice she was using.

The comment endeared her even more to me. (and she is beloved!)

Knowing and understanding my communication weaknesses , she deliberately builds connections verbally so that my mind can follow her intent in communication.

How wonderful if others would do this too. I never recognized how she had been doing this intentionally, and I was struck forcefully with deep gratitude for the extra effort she has been taking since she learned of my autism to make communication easier for us together.

If you have an autistic loved one, perhaps give consideration to building communication bridges to help fill those gaps where we simply can not travel without the help of extra explanation of connections in thoughts, ideas, and intentions.

Adult Autistic reaching out

Self Advocacy, Ageing on the Spectrum

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More on self love soon.

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.

Diagnosis older Autism

Awareness of autism is rising and not a moment too soon.

So many adults with autism are walking around with no diagnosis and little understanding of the condition, due simply to the fact that little was known about Asperger’s/autism when we were young. Only the most severe cases of autism were sought and diagnosed until perhaps the last 15 to 20 years, depending on your location in the world. In other places, autism is still not recognized or diagnosed at all.

We will recognize ourselves ( autistic people) as feeling confused, frustrated, angry, and socially outcast almost in perpetuity, with little rest between any of these. There seems to be little peace to be found in our lives and our struggle to understand most things in our world is real.

Our earliest memories may be of emotionally and physically traumatic experiences due to our inability to process emotional or physical input or stimuli. ( overload of senses and the poor ability to process socially related things is frequent, even before we have words to describe these things)

We do not understand what the world wants from us and why we seem to be unable to do things most of us know intuitively (even before society tells us in many ways) we ‘should’ be able to do. We are frequently castigated, punished and shamed for this disability and struggle to find ways to avoid the negative feedback and to perform as is obviously expected, but so difficult to achieve. Punishment and emotional pain seem unavoidable and this can lead to despair as well as anxiety.

Many of us will have found the world overwhelming and have developed self protective habits as a way to cope. We will avoid social situations, preferring self isolating activities and the quiet and relative safety of a place to hide.

When participating in family routines as youngsters, even when older, we will often be at the center of family disagreements and upsets. Misunderstandings will be frequent and emotional displays will be unpredictable. Many times we simply don’t “get it”.

We usually prefer not to be interrupted in our activities, routines, or in speaking to others.

We seem to lack humor and understanding of nuance. There is usually nothing subtle about autism, it is ‘full on’ full time. We have no sense of timing and frequently no sense of what behavior is appropriate. We have to be told our behavior is inappropriate (and usually we are mortified!).

We are often unaware of how “different” we are in behavior or beliefs, or in the way we dress and act. Some of us become good at copying these nuances. This is sometimes called “masking”. It is changing oneself to fit in without perhaps understanding fully why it helps one to “fit in”.

We are frequently oblivious to other’s feelings and desires, and we usually can not tell when what we are doing or saying is making others uncomfortable.

When told we have caused dismay, distress, discomfort, we are usually upset, because it was not our intention to do so. To an extent, we can learn to be more aware of others, but we often miss social cues that would be obvious to others in spite of our good intentions.

The idea of cold-hearted uncaring autistic people is generally a mis-perception. If we know we cause hurt, discomfort, frustration, or sadness in others, and are informed as such, we are surprised and remorseful. I am convinced that most of us have every bit as much compassion and caring as NT folk, but we are less likely to pick up cues that tell us another person’s thoughts and feelings (we have to have it explained to us). We might not show it, but the feelings are there, and as intense as any other person’s.

We are often poor at sorting feelings out, and worse at finding ways to express them. This is part of autistic differences in mental/emotional processing, and not deliberate callousness on our part.

We are usually known to be odd, quirky, or eccentric, sometimes highly intelligent, sometimes simply “out of it”.

Like anybody else, our skills or interests will vary in intensity and content, but frequently we will have just a few very intense interests in things that seem to be of narrow and restricted topics. Our knowledge of these interests and involvement in them may exceed all other things in depth and enthusiasm.

We may not be “well rounded” in this way, knowing or caring little for much outside that which we are involved in, and often have impatience with others’ interests which are different from our own.

We will have been accused of overreacting to injuries, temperature, sounds, motion, shadows, lighting, things we see or feel through touch or in our emotion. Because of differences in neurological processes, we in truth can be hyper-sensitive, or in some cases have no sensitivity at all to the senses of taste, sight, sound, smell, and touch. It is not ‘all in our heads’ but is as real as any feeling NT people feel, but simply outside the ranges of intensity of what is “normal”.

We may have meltdowns with frustration and feeling overwhelmed with emotions or sensory input, which we find we can not regulate or process at given times. Sometimes our attempts to control this input or to process ideas or emotions will seem rude, violent, extreme, unusual, or odd.

We will tend to self- comfort in many ways: pacing, walking, twitching or spinning, jumping, repeated picking at body parts, twirling hair, chewing nails, tapping fingers or toes, working something with our hands, rubbing hands or other noticeable “different” behaviors.

Some of us may self- harm, or abuse drugs and or alcohol, in attempt to escape the overwhelming anxiety and depression which often presents itself as a result of our inability to cope with our world.

We may lack impulse control, saying or blurting out our thoughts or doing something as soon as it enters our mind, thus being accused of inappropriate behavior frequently.

We may over eat or eat something obsessively in exclusion of much else.

We may prefer one set of clothing to all others, or read or listen to music or watch the same book or movie over and over.

Anybody can have some of these traits, any autistic person may not have them all, or even have more than a few of them. There are many other ways to spot autism, or to suspect it in an older adult you interact with. If you find yourself recognizing Grandma or Aunt Lucy, or Uncle Mike, your elderly sister or the old guy who sits on his porch rocking in his rocker every day from exactly 2 to 5…. undiagnosed autism might just explain some of those odd mannerisms, quirky behaviors, lack of social competence, and their outlook on the world around them.