Autism and epilepsy

autistic seizures are common co morbidity

There seems to be a very strong connection between autism and seizures, or epilepsy.

Recent studies have linked both developmental neurological conditions, with some studies showing up to half of those diagnosed with autism also having seizures.

Autism has not been linked with specific types of siezures, all types of seizures may be experienced; but it has also been tied to several genetic syndromes which are also known to be related to epilepsy or seizures.

The fact that both seizures and autism are neurology based is where we are likely to find cause and effects. If you have been diagnosed with any genetic syndrome, look up the incidence of both autism in the syndrome, and of the incidence of seizures.

Only approximately 2 percent of the total population is likely to have seizures, but up to 46 percent of those diagnosed with autism ( in one study, many studies cite lower percentages from 6 percent to 33 percent) may have seizures. The disparity of study results may depend on age groups and other factors in the studies performed. Very young children or infants may not have seizures but develop them as they grow older, for example.

Much needs to be learned, and genetics is suspected to play its part.

Females seem to experience seizures more frequently than males. If you are searching for information suspecting autism diagnosis and you also experience seizures, this may be another signal to seriously explore possible autism as well.

Autism and energy

I forgot what it was like to interact in the “real world”

I have been relying on internet communications, reading and writing and conversing in emails and on forums using the printed word almost always since I have obtained my autism diagnosis.

Yesterday I gave a talk on the nature of autism for the local adult learning group associated with the community college where I live. I was video taped and participants joined on Zoom.

There were 3 persons besides myself in the studio/classroom, including the camera operator and several online. I was gratified to have the support of the group to make my presentation, since I am trying to reach out to raise awareness of autism, especially in adults.

I had forgotten how difficult it is for me to do things in “real time” .
I became anxious as the presentation went on and more questions were asked. My mind could not form words fast enough to say clearly what I was thinking and I gave inadequate answers. My heart pounded, I had chest pains, and I was shaking inside… I was essentially in flight mode, I call it “stampede mode”. But I was able to finish the talk with the help and support of those in the room with me.

Interacting in “real time” with others even in that small group was so difficult and so draining. I must use a tremendous amount of energy to perform under ‘real time’ interactions.
When my sensory processing keeps me from keeping up with events, questions and what I am seeing it takes a huge amount of concentration to focus and understand, to prepare the words I want to speak and explain things adequately .
None of my spoken words or the things I hear are intuitive or well sorted, things just go too fast for my processing. I simply don’t have proper tools to do “real time” without struggles and anxiety.
I used so much energy and was so stressed and distressed by the time I got home!
I had forgotten what a toll on my physical and emotional resources it is to interact with others in “real time”.
I am amazed that I survived all those years of not knowing or understanding my diagnosis and that I survived with luck, keeping my sanity and health for most of my life. How blessed I have been, how lucky to have made it this far.
I was acutely aware yesterday of my sensory struggles, ( my disabilities) and am worried about how it will be seen and understood by those who are just learning about autism. Maybe that is good if observers could see how I struggled. That is part of the nature of autism.

I was exhausted by the time I got home about 2 hours after I had left home, and the inner quivering did not quit for several hours.

I am determined to do this more frequently if I can find groups to talk to, to force myself to interact in “real time” to explain and interact, answer questions and raise awareness about the real nature of autism without all the stereotyping and mistaken assumptions.
It is so important to me to spread the word about autism, to explain it, to try to reach adults who missed early diagnosis because it simply was not available at the time of our childhood or young adulthood.

I am hoping I will become more comfortable and be more self forgiving of my struggles and feelings of inadequacy as time goes by. Right now part of me feels like I failed miserably.

The video may be available on youtube for a while, look under “ALL Alpena Michigan” for a series of talks from this excellent program. I have never seen myself on video before. I think I am in for a shock. ( if they post it online) I will try to post a link here if the video is shown on line.
LINK address to Youtube video, you may have to copy and paste. thank you
https://www.youtube.com/watch?v=Ol1m_tMZDi4

Resting up now and doing self care, finding my self comfort rituals and trying to figure out how to do a better job next time. Thank you all for being here!

Autism in progress

Science of autism is a work in progress

Nothing we know about autism is “written in stone”. Science keeps learning and discovering new features of autism, learning more about neurology how completely that is tied to the behaviors used today to diagnose us.

I wanted to comment on a couple of areas of growing information that seem to be related to autism but so far have not been completely proved through strict scientific tests.

More is being learned about ADHD and ADD as it has many parallels to ASD (autism). Many people with diagnoses of ADHD and/or ADD are learning they might be autistic, and many who have been diagnosed as autistic are today being diagnosed with ADHD or ADD as well. ADHD and ADD have been given more attention in the medical community and drugs are often used to try to help diagnosed persons attain more control over some of the worst struggles.

Many new drugs have been developed specifically for this purpose.
So far there are no pharmaceuticals specifically for autism, but there are many for the frequent co morbidities of anxiety and depression. (those drugs are used for folks with ADD/ADHD diagnosis as well).
Many recent and current studies are trying to sort how these diagnoses differ and how much they share in the associated neurological performance issues.
Progress seems to be so slow for the hundreds of thousands of people to whom these neurological diagnoses are given.

Another area of recent interest is something which is more rare, “selective mutism”. Selective mutism is something that happens to many people but despite the misleading title, the mutism is not chosen or controlled by the individual, mutism happens in select circumstances only, and speaking ability is entirely out of the control of the person it happens to in those circumstances.
This has been thought to happen to less than one percent of the population.
Selective mutism is also described on DSM 5 and many early studies found no connection with autism.
I read a recent paper however, which tested a group of persons who had a diagnosis of selective mutism for autism and 63 percent of those tested had scores high enough to be diagnosed with autism.
Science moves slowly. Neurological struggles have been classified by behavior for most of our history. We had no other tools available. Now with the advent of modern science with its ability to measure and test actual neurological function through scans, electronic monitoring, and so much more, we may be on the verge of being able to look at a person’s actual neurological function and see which struggles will be the worst and the best, enabling us to more accurately pinpoint useful things we could do to help.
There are loads of comparative studies and reports, and recent articles on the WWW, where you can find links to all the subjects I discuss on these pages.

Motor Skills and Autism

Proprioceptive, Interoceptive struggles are a part of autism, not an incidental feature.

I was pleased and relieved to see this on my newsfeed page today.

https://www.spectrumnews.org/opinion/motor-skills-in-autism-a-missed-opportunity/?utm_source=Spectrum%20Newsletters&utm_campaign=861d6ef162-EMAIL_CAMPAIGN_202

On many of the autistic forums I attend we have constant discussions about our struggles with coordination, eye hand difficulties, constant bruises and broken bones from mis judging distances, need to touch things (the walls, you neighbor, etc etc ) to keep your balance… the pages are full of struggles with motor skills of all sorts.

You know I do not often share blogs or pages from other sources, please read and understand what we have been saying all along. Now science is recognizing our physical struggles as well as our social struggles and our communication struggles.

DSM 5 does not include proprioceptive/interoceptive/motor struggles in the criteria for diagnosing autism. Yet the doctor who gave me diagnosis 2 years ago noted that in his 40 years of practice, he had never met an autistic person who did not have struggles with perception, balance, gait or other physical/motor symptoms of proprioceptive nature. Evidently this truth has been known to some practitioners for years.

Now studies are documenting this truth.

It is not too soon to add motor/proprioceptive struggles to criteria and known struggles of autism in the next DSM.

Physical therapy and occupational therapy, therapy for balance, gait, performance, can all help with these things. If you don’t have insurance or can’t afford to work with professionals, Look for information in books, videos, on the internet and other sources.

There are multiple exercises and ideas to incorporate healthy proprioceptive activities into our lives and those of our loved ones. If one doesn’t work for you, there are dozens of alternatives.

As we age, we are more susceptible to injury and falls due to our slowed responses and our less robust physical condition. Adding exercises for proprioceptive difficulties can improve our quality of life in so many ways. It is OK to ask for help in these areas, you don’t have to do this alone!

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.

Autism Imposter Syndrome

Feeling like strangers in a strange land

Where to start with describing this frequent feeling among autistic folks?

In discussion groups on forums and Facebook pages and other media it is so frequent that an autistic person will describe feeling like an outsider, like they don’t belong, as if they were born in the wrong time and or place. Many equate this feeling with being alien and from another world and deeply believe in their difference from others but until diagnosis are lost to understand why this feeling exists within them.

There is another version of this feeling lost and like we don’t belong which happens to newly diagnosed adults. We may question the diagnosis, may feel like it is all wrong, doesn’t fit.
We question whether the diagnosis is real or all a huge mistake.

The feeling is “imposter syndrome”, which is an actual label given to a very common experience among not only autistic folk, but neurotypical individuals as well.

Imposter syndrome seems to be caused by lack of confidence in one’s situation. We feel it when we have continual experiences or worries that we are not accepted, not understood, are doing “things” wrong or badly. Reality may be that we are doing just fine, but our self perceptions are of failing or being about to fail due to being inadequate in skills or poorly prepared for what we are doing or attempting to do.

Autistic reality and reported experiences of older autistic adults gives us frequent feedback to confirm that this feeling is often justified and is considered part of our autistic reality.

We really do live in places where we are frequently misunderstood, where we fail to communicate, where things are difficult to understand, and we often have difficulty knowing or understanding what is expected or considered correct in interacting with others .

It is no surprise that autistic folk feel this frequently and sometimes adopt being “alien” as part of their personality or the structure of their culture.

Smell and Taste

Sensory struggles are also part of autism

Although the DSM does not list sensory struggles as diagnostic for autism, almost all autistic individuals will have some sort of sensory processing issues.

Eating and feeding issues are common points of discussion and concern on autism parenting forums. Autism is linked to higher incidence of eating disorders, and is linked to struggles to gain or maintain or control weight.

Taste, texture, scent, moisture or fiber content, and more can enter into the difficulties we encounter with food while being autistic. The smell of any item, food or not, can be a stimulus, attractant, or repellant to the point of causing meltdowns or vomiting. The way an item of food feels in our fingers or tastes in our mouth can give delight or cause us to gag and rebel, developing extreme avoidance to keep from encountering certain food experiences again.

Other autistic individuals may be completely unresponsive to taste, texture, smell of items and therefore have no interest in eating or may indiscriminately devour everything presented to them.
Some may go as far as tasting and eating things that usually don’t end up as food because we find the smell and or taste interesting or appealing.
It is not particularly unusual to encounter both aversion and unresponsive reactions to varying food items in one individual.

You may be one of the folks who love to smell anything new that you encounter, smelling the pleasing items over and over, or using scent personally, in candles, oils, sprays, etc etc etc in everyday living, or you may be a person who loves to take a taste of almost everything for the same reasons.
It took a long time for me to recognize that I am one of those who appreciate scent and I savor the experience of including some of my favorites in every day life.

Others are super sensitive to the point of being offended by most scents and will go to lengths to avoid the experience. I still gripe about one toy of my daughter’s when she was quite small, which had a chemical ‘scent’ deliberately added to the vinyl it was made of. I hated that thing!
( this was over 25 years ago). I still have not recovered from my aversion. Again, I experienced extremes in both reactions to scent.

Depending on the individual, our reactions can be “off the charts” in either direction when we experience flavor, taste/ scent, or odor. I don’t know how frequent such reactions are in neurotypical populations. I think sensory processing disorders of scent and taste are probably hardly studied at all.

Senses are often more extreme in the young and we may learn to tolerate or may no longer experience taste and smell in the same way as we grow, develop, and learn to tolerate some experiences. As in all senses, with autism, we will experience extremes more frequently than what is considered typical of the majority of the population.

Now I think I’ll go light one of my favorite scented candles.

ageing with autism

the getting older side of being autistic

My father used to quip about getting older “it beats the alternative”. Yes indeed, that is true.
Day to day struggles as we age make life harder for all of us.

Autistic people who are already struggling with life and how to get through it successfully may have more difficulty than whatever is “typical”. Nobody escapes it, everybody gets older unless they have achieved the alternative (death).

Health issues and simply living longer are extra difficult when autism is in the mix.
We are often less aware we are having physical problems due to autistic proprioception/ interoception difficulties.
Some of us simply don’t notice that “something is wrong” until it is discovered by somebody else and pointed out.
Some of us are afraid of going to the doctor, the clinic, the emergency room, some of us need a lot of support to do self care such as taking regular meds, getting regular checkups, “tune ups” and follow ups .
Many autistic people have hard times sticking to special diets, shopping for special foods or aids to help us be safer, being aware of safety, keeping ourselves and our surroundings clean and healthy, etc etc etc.

I am aware that those who have “normal” neurology may struggle with these things too, but I also wonder how many elderly with those listed problems might also be undiagnosed autistic?

We may be more prone to falls, to have more health issues, to get less care if studies of the past are correct. Overall, many autistic adults do not live to become old. Average age at death for “normal” adults is 70, average age at death for autistic individuals is 54 .

I guess I don’t have to emphasize self care and attention to safety as we age. We know we will all have more struggles as we get older.
Why not consider what things we can do at present to prepare for better self care as life gets harder.

Put safety precautions and self care at the top of the “TO DO” list today.

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.

Autistic Masking

what about masking? What is it?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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