My Anxiety

Anxiety. An illustration I drew specifically for that post. You can see part of an alien walking in a thigh high murky water, their reflection is visible, distorted.

Imagine your day. Everything is the same, but you always have to go through water. You have no control over the height of the water. The water makes everything you do less comfortable and much much harder. At the end of the day you are so tired from going through water you have no energy for other things in your life.

This is my life. My anxiety feels like my surroundings are constantly flooded with water. I have to walk through this water, whenever I go.

Sometimes my anxiety levels are quite low, somewhere around the calves. Sometimes I have to make my way in the world with water up to my chest. On especially good days my anxiety is not higher when my ankles. It is still there, and it feels like walking in water. And water is more resistant then the air. Most people around me walk on dry land, sometimes being wet, but not like this. Walking day after day, week after week, for years — in the cold waters of the anxiety. Waters that you can’t get used to.

Sometimes the situation becomes so unbearable that I take my medication, alprazolam. Alprazolam is a benzodiazepine, and benzodiazepines are highly addictive. My psychiatrist said that I shouldn’t take more then 3 a week. So I don’t. If I can, I don’t take it at all. I am used to living in constant anxiety.

When I take my medication, the level of water becomes lower, but I stay soaking wet. I am never completely dry. Sometimes I become a zombie. Feeling like an un-anxious zombie is better than struggling for air. Feeling numb is way better than drowning in anxiety.

There is an another thing I use for my anxiety. I use a concentrated herb oil. I don’t use it in the way other people do. I take small doses, rarely. But when I take less then a drop of this oil, I can have several hours when I don’t feel anxious at all. I can clean the house, write my thesis, cook food. I can eat without flashbacks. I can even handle meeting my abusive family of origin. I still don’t like it, but I don’t finish the evening crying, self harming and a total wreck. In these precious hours I am not walking in water. My anxiety doesn’t suffocate my motivation. My fear doesn’t become something that stops me from doing things. My anxiety leaves me for several hours. Until I tried this herb, I didn’t knew what is it like to live without feeling constant fear.

On most days I choose not to do anything about the water, even if there are things that make it higher. Public transportation is making the water higher. Meeting my mother or grandmother? Even more. Being shouted at? Eating? Talking to people who expect me to be neurotypical? The water rise and rise.

On good days I can manage the water. I stay at home if I can, and try not to make my water to rise. It is hard, because I have to eat, but I have several methods to trick the water. It is not as good as using chemicals, but I am so scared of addiction that I choose to use them only if I have no choice.

But even choosing to use my medications is hard. It is hard because of my executive dysfunction. Going to take the herb oil or alprazolam is also scary. Acknowledging the water is scary, because I was told for years that the water is not there. That it is not scary. That it is not hard. The reality of things being hard against the things I was told were confusing, but not unfamiliar. In the past I was told when I was hungry, cold, happy or interested in things. What I thought about what I felt was irrelevant. The things I said I liked were taken away from me. They said that if I like something because it has some characteristic, it means I should like another thing with the same characteristic. Even if I didn’t liked it.

So acknowledging the water, means that I have to fight my memories of others telling me otherwise. Acknowledging the water also means paying attention to it. And when the water is anxiety — it becomes even scarier. Because when I know what I feel — I am actually feeling it. Why is that? Alexithymia. Most of the time I am not aware of what I feel — emotionally, but also sensually. For me, knowing that I am afraid is like knowing I am lost. It makes things scary.

So I am living like that, forever sailing in the waters of anxiety.

Beware, here be dragons.

Inktober, ramblings and more recent drawings

If you are here only for the drawings, please scroll down. No shame in not reading this post!

I am very low on mental energy lately because of my work. I used to work once a week till recently as a caretaker of an elderly woman. My grandmother is working with her 4 times a week. That month my grandmother went on a vacation and so I had to fill up her place and work 5 times a week. I don’t work for long hours and the work itself is not hard. It is not hard to make her food, clean a little bit, do some exercise with her and measure her blood pressure. I used to study nursing, so nothing here is really challenging. The challenging parts are keeping conversation with her while her daughter and son-in-low are present. I don’t only have to think about responding to her appropriately and assessing her body language — but also keep an eye on her relatives. I have to think if they might tell some of the things to my grandmother or my bosses (who pay me my salary). As autistic — this is hard. The other challenge is taking the bus to and from work. if I feel like I have some spoons/energy after work, after the bus — I usually so tired I just have to sleep for some time. I hope that after I will give in my thesis (I am actually sort of finished, but I can’t give it in yet because of the Jewish holidays) I will be able to find a job that will be much easier, and in my profession.

Anyway, in the several past days I found myself drawing more then usual. Maybe because I just had my sketch pad and pens in hands reach. And so, I can actually do some drawings for Inktober challenge. I know I have to be consistent in order to participate, but the only consistent thing I can manage is “drawing when I feel I can”.

So, here are my last drawings. I hope you like them!
Some additional commentary can be found in the links to DA in the image descriptions below.

Underwear Marriage. It is a pun in Hebrew.

Hikari Yagami.

Old-school Lolita

Dancing Amethyst

Dancing Rose Quartz

1. Are you participating in the Inktober challenge, or just posting somewhere your art? I would like to see it!
2. Any advice about balancing work and spoons?

Why I wasn’t diagnosed as autistic during childhood? (part 5/5)

Part 5/5: Synthesis

A graphic using my old drawing (dreaming solider) as background. It contains the dictionary definition of the word Synthesis: combination or composition, in particular. the combination of ideas to form a theory or system.

5. Synthesis: Life, ignorance and everything in between.

This is the last part of my 5 part series about the reasons for me not being diagnosed. I analysed 4 of them. If you haven’t read them yet, I do recommend doing that (but you don’t have to do it in order to understand this text). Here is a brief summary including links to previous posts:

1. Being an immigrant
2. Being normalized and abused into passing as a neurotypical by my family of origin
3. Being perceived as a girl and having presumably “atypical” manifestation of symptoms. (Read more about atypical autism traits here)
4. Lack of awareness and acceptance

In each part I explained and gave evidence and examples for these reasons. But if you look at the reasons and the examples I gave in these posts, you can easily see that they intertwine in some interesting ways.

The lack of awareness works so well with “atypical” symptoms and being a girl. When the knowledge about autism is outdated and based on stereotypes, it is so easy not to think that autism might be involved.

Atypical symptoms are not actually atypical. They are the same symptoms that manifest differently in people whose socialization wasn’t of cisgender boys. Shyness is something that is somewhat desired and seem like a good quality in girls — which a lack of socializing may look very similar to.

If one is an immigrant these symptoms may seem even more atypical. Some of the symptoms may be even dismissed/seem like cultural differences or immigration response. Immigrants have different accent and have problems with grammar so my different speech patterns, tone of voice and my made up expressions of speech never seemed like they may indicate neurodivergence. I actually worked with some neurodivergent kids who were born in Israel and because they are “Russian” no one was surprised or suggested any help that wasn’t about language skills. I worked with them and although we did work on language as well— it was clear that it was not their only hardship.

The fact I am from abusive family only pushed my symptoms into the more atypical side and pushed me into masking them so I wouldn’t be punished. The fact that I was an immigrant helped the system not to care about that, even when I told about the abuse I lived with and self harmed. The lack of awareness and acceptance just resulted in my teachers and family see me as an odd person — just the way I am. My abuse and trauma related symptoms and my autism worked against each other and just made me look like a very confusing and odd individual — and no body actually cared enough to ask me how I feel without pressuring me to obey them. My abuse taught me to ignore my body and my sensory sensitivities so no one , including me, even noticed them till I was melting down from unknown reason. I lived feeling anxious 24 hours a day without linking my feelings to my constant discomfort.

I was quite “successful” academically so there was no reason to do anything. I am not intelligent or smart, but people tend to think I am, so they just think my behavior is a game I play in order to get attention. They enjoy my “colourful character” and my “wacky humor” for a short time, till they understand , to their horror , that I am weird and strange all the way down — from top to bottom, strange down to my bone marrow. At that point they just feel betrayed and stop talking to me, or just decide that I must behave that way from a choice and not because I actually have very little idea of what I am doing and I am always anxious about doing a social mistake, which happens very frequently. They think I do it on purpose. Because it is only reasonable that a person won’t look them in the eye in order to offend them and not because they actually don’t know better, and when they do know — they don’t do it because it is scary and painful and hard.

So I just lived that way. As an outcast kid who was abused at school and at home, who tried to please people around them and obeyed them in a hope they will stop hurting me. I obeyed and hoped that one day I will know enough and will “get it” because every thing will click into place. I was reading books and articles about body language — but usually they assumed more understanding when I had. I felt like an analphabet who was thrown into an advanced literature class.

I actually called myself as “socially disabled” several years before I was diagnosed, because at age 22 I had no choice but to “understand” something must be very very wrong with me if I just can’t understand most body language (unless pain related) and tone of voice and people in general. I thought that it must be that way because I was abused and socially isolated (by my grandmother and by my peers) — and somehow I missed my opportunity window to learn non verbal communication and that I will never be able to communicate with people.

But I was wrong. They were wrong.

I was just autistic.

I am weird. And I am broken. But not by my autism but by my life. The wrong in me was actually done to me, upon me — by the abuse I leaved through.

I am working very hard on healing myself and being the best I can. The best autistic person I can be. I will never be neurotypical, and that is ok. I don’t have to be in order to be happy.

Why wasn’t I diagnosed as autistic during childhood? (Part 4/5)

A design concept: “autism — acceptance & awareness” by myself. The design really sucks as a concept, but the drawing is not bad. You can see a black shade of a human head with rainbow hair and white lines for face features. Near the head there are two flappy palms.

TL;DR: Because I was (am) an immigrant, from abusive and normalizing family and (misgendered) as a girl. Plus, there was lack of awareness in general. This is part 4 of 5 part series that answers that question. Every part will deal with another element that explains why I wasn’t diagnosed till I was 25.

4. Awareness and Acceptance

In Israel you won’t hear much about autism. Things are smaller here, and the constant middle eastern problem is actually happening here and is not a thing that other countries put on their news when they run out of things to report about in their country.
Autism is not used as a curse word much (retard, gay, son of a whore are in the top) and we don’t really have a well funded organisation to have huge campaigns. We have our version of Autism Speaks (ALUT — אלו”ט — The Israeli Society for Autistic Children) but apparently other organisations don’t even use the words “autistic”/”autism” in their name. Our other big organisation is “ Association for Children at Risk” (Another Autism Speaks mini-version). Risk for what? When my school sent me and my classmates to collect donations for them I thought they are for children who are abused at home (in a funny way, I was both autistic and abused at home — and no one in “the system” ever did something about it). Their campaigns never explained anything about what autism is or how it is manifesting. The image that is given to the public is that autism is a kind of intellectual disability. Although autism and intellectual disabilities frequently co-occur and have some similar symptoms — but they are still different.

It is not that the health care system here is so bad, it is just that when it comes to problems that don’t manifest in a physical and measurable way — we are sort of 20 years behind the world (unless it is about combat PTSD). Asperger is something that is only now starting to be recognized here, and even during my assessment I was checked only for Asperger syndrome (AS), although I am way more suitable for the DSM-IV diagnosis of PDD-NOS then for AS. Many care givers haven’t heard about the changes and the DSM-V use yet. Even the advocacy here is still very different from what you’d here in the English speaking community.

Testing, testing!

In my childhood there were instances when someone thought something is wrong with me. I was assessed in “Nitzan”( Israeli Association for Children and Adults with Learning Disabilities) — and nothing seemed wrong. My partner who has dysgraphia and dyslexia was accused by them of being “just lazy”. Both of us were assessed in the late 90’s at least my assessment (1998?) was very short and contained a 20 minute meeting of me with a lady who could write numbers upside down, as she gave me some math problems. I don’t know what my mom talked to them about.

My hearing was also checked — somewhere during my first or second grade (1995) — but it required some dexterity in picking up toys when I have heard a sound, so my result were somewhat problematic but still in the normal range. It was checked because I wasn’t “hearing” the teacher during lessons. Thing fell from my hands, I struggled with having friends and couldn’t copy from the blackboard fast enough — so I had to stay long after school to finish copying everything, but I was never tested for autism. These wasn’t seen as problematic as well, although I was the only one to stay and copy everything.

At my 5th or 6th grade (1999) I “developed a tick”. There was a hand game called “boom-click-clap” that everybody at school went crazy about and it was simple enough for me to learn (a thing which I really struggled with). It took me some time to learn it, and people weren’t very eager to play it with me so I played it with myself — which was quite cool, because you can actually do that in that particular game. So I played this game, and I played it a lot. It became one of my favorite stims, and my partners even recalls me using it at 10th and 11th grade. My mom got scared and I had an EEG test preformed on me. Nothing again.

At about the same year I was sent to a children’s psychologist because I had no friends and was physically and mentally abused by classmates and my grandmother. No one thought that they needed a treatment. The problem was clearly with me. Still, not even a suggestion for an autism assessment that I know about.

And it went on and on.

socialization

Here, if a child is weird the first thought that comes to mind is that they just seek attention. We are queer for attention. We get ourselves hit for attention. We get bad grades for attention. We are even in pain for attention.
So, if no one found anything wrong with me — it was clearly because I wanted attention. This is because conformism is a very valued in Israel, but in a really weird way.
Boys are very important here because they will grow up to be soldiers. Girls are future wombs for future soldiers (and also potential military coffee makers). If you don’t seem like you will have a problem with one of them, your struggles will be ignored. The acceptance to different people is very low, and you will have to deal with social alienation. This might sound weird to an outsider, because Israel is an immigrant society — but here is the catch: the main ideology that was forced upon immigrants for almost 50 years was to be as indistinguishable from the peers. Immigrants must look and sound as local as they can, as fast as they can. One of the compliments an immigrant can get here is that “wow, we could never guessed”.

Lets tackle another thing with awareness: this is a small country with a small population. And it means that the number of people with any given disability is lower here. Under some point it will mean that you won’t hear about some disabilities even if they are not really rare. And this happens here also with issues like anxiety and depression and even bisexuality. It is just something that “doesn’t happen”. This is also the way autism is seen here.
And acceptance? Well, autism acceptance is very simple here. If you are recruitable to the army, you can be accepted, maybe. The army is seen as the place that decides if you are good enough to be a member of the society. If you are recruitable you probably don’t have any problem. I was, and that is why no body thought that I might have a problem in my teen years, or while I was in the army, or even after — till I had a psychologist who actually talked to me because I wanted help with my struggles. This psychologist was the first professional ever to recognize that something is different in me — because she actually listened to what I had to say, and not to what my parents and teachers wanted to see — which was a child who seem so bright and smart yet so lazy, weird and stupid.

Previous part: Girl

Next part: Synthesis

My mother lied on my autism assessment

“even if your parents don’t believe you, your identity, neurotype and/or disability are still valid.” — Graphic by me. link this post — or the one you are reading now and credit me if you want to use it.

My mother lied on my autism assessment. I don’t know what she said, but I believe it was inconsistent (with her words or with facts about me) — so the psychologist doing the assessment asked to bring in another family member, and said in an indirect (“polite”) way that my mom lied.Mother also during the whole meeting with another psychologist about the fact that I can not “have Asparger’s syndrome”, even when the psychologist read section by section why I meet the diagnostic criteria. 
She said that it wasn’t true or that such behaviors are common and that she “was acting the same way” and that she is “normal”.The psych was shocked. I was very disappointed with my mother.This happened 2 years ago. She still holds her position that I can’t be autistic. Because I am:

1. “Too emphatic“ or “have empathy”
2. Not “Sheldon-Cooper’y” enough
3. Can communicate very well with (neurodivergent) children while giving them privet lessons.
4. Have a partner, the same one from 11th grade.

She is also paying for my psychological treatment, and hopes it will help to get rid of my autistic behaviors. The “can’t be autistic” me.

This is the way, my family deals with things. They just pretend they are not real, and when you act by these things (show feelings, act in a gender non conforming way, etc’) they shame you for them.
This is how my mother treats my autism, my sexual orientation, my gender identity, my mental health and the fact I can’t drive.

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I have seen families do it to their members by denying their disability (I know several women with fibromyalgia who’s family just believe they are “lazy” and “spoiled”). I know a young man who’s parents deny his Asperger’s — even though he was diagnosed as a child, and as adult. They also denied him any support. 
This is real. It happens to many people and it is wrong. Ignoring another’s person’s struggles and pretending they are not real is a shitty thing to do. It won’t make these people feel better, won’t “cure” their condition and won’t make them tougher. All that this will do is show them that they can’t trust you with the truth. Because you prefer to pretend that they are what you think they should be, instead of accepting the reality. Because maybe you are “too weak, too touchy and too sensitive” to handle the fact that the people you love are not what you want them to be.

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Your identity and/or struggles are real, and if your family denies that — they are wrong , even if they do it out of love and care. Even if you are wrong — and your diagnosis is false, you are defensively struggling with something , and them denying it won’t change that fact.

Why I wasn’t diagnosed as autistic during childhood? (part 3/5)

A photo of me from age 3.

TL;DR: Because I was (am) an immigrant, from abusive and normalizing family and (misgendered) as a girl. Plus, there was lack of awareness in general. This is part 3 of 5 part series that answers that question. Every part will deal with another element that explains why I wasn’t diagnosed till I was 25.

3. “Girl”

I am not a girl or a women but I am often misgendered as such. At birth I was assigned as female, and got a female name. I was treated as a girl, and when I tried to behave as I felt was right for me I was punished.

I was shouted at for using a hammer and nails, mocked for trying to open pickle jars by myself and discouraged from studying martial arts or doing “more sport then proper”. But this was not the thing that prevented the diagnosis. The thing was… well… being assigned at birth as female (AFAB — assigned female at birth).

Because autistic girls and AFAB children are not getting their diagnosis and support. Because Autism and Asparger’s is “a boy thing”. This is also true about trans girls and AMAB’s, whose autism may seem atypical and “not like the stereotype” — because their socialisation maybe wasn’t as “a boy”. I don’t have to write about it, many people wrote about it before me. Plus, the fact that more boys are diagnosed with autism somehow made many people believe that only boys can be autistic. Go on, read about it. I put 10 links about in in this paragraph. Come back after you read some.

When adult people saw me, they saw a shy girl. It wasn’t hard to learn to please stranger adults, I had plenty of experience from home. When I was 14 I could talk about things many average adults don’t know much about, so I was treated by some as gifted, and they were just confused when at some moments I just couldn’t do or understand things.

My horrible gross motor skills were ignored because I was twice invisible: I looked like a girl, and I wasn’t good enough to gain any attention from the sport teachers. They usually assigned another student to teach me the thing “I should had known” how to do. I couldn’t catch balls, jump with a rope or stand on my hands like all the other kids, and it never occurred to any of them that it is not because I don’t want to.

I acted weirdly everywhere, but I could tone it down near adults, who just didn’t saw me.

At age 4–5 I played differently in the kindergarten, but I had 2 friends, with whom I played occasionally. It was common for me not to understand the games. For a long time I drew the same drawing again and again. Occasionally I hid when the teacher called everybody in after the time outside, and played alone behind the trash bins. I was the shy russian girl, and the staff (of 2 women) had about 30 to 40 kids to take care of.

At school I was even more confused when in kindergarten. My motor skills sucked, my ability to copy from the blackboard was terrible but somehow I managed to do OK at class. When I peed in my pants no one knew. When I didn’t understood I didn’t knew I was allowed to ask. The teacher was nice, and I occasionally played with the other immigrant girls, and my grades were not terrible. The only black boy in class suffered from so much shit that the teachers contributed to (he had a desk alone) that the fact no one saw my struggles is not surprising. I knew how to be quite, and it was enough. In a class of 35–40 students, if you can keep quiet you are good. As long as you don’t disrupt the classwork, no one will notice you, especially if you are not “bright” and understand everything immediately, unlike me. I was “stupid”, but not stupid enough to gain attention.

I stimmed. I struggled with social cues. I was so weird that I was actually kicked out for it in my first academic studies. I was constantly bullied. i lacked eye contact (unless I had to fake it in order to convince my grandmother that I was not lying). Yes, I talked. I could read. But I was so weird and confusing that when the teachers weren’t pitying me, they were convinced it is my fault for being bullied, confused and angry for me being so bright and yet not able to do some things or just ignored me. I would hide under the table before my piano lessons, because I liked it there and I was excited and afraid from my family — but the teacher thought it meant I didn’t want to play the piano. I cuddled under the mattresses in the Ballet lessons, because it was comforting, and I didn’t knew I should stand still and listen. I had my obsessions — like listening to the same story cossets over and over. I actually met every criteria for PDD-NOS and maybe even for Asparger’s syndrom — but I was a girl.

I was not smart enough to meet the stereotype for Asparger’s syndrome, and I just looked shy and cute when I ran away and went to play by myself. I sang to myself, talked to myself, told stories to myself. But when my mom took me to an evaluation in an organisation — they found nothing. I was just a little bit slow. The same organisation found that my Dysgraphic and Dyslectic partner was “just lazy”, so I don’t think their evaluation had any value.

I was also taken to an EEG test, because of the “ticks” I had. It was my favorite stim — doing over and over again 4 part maneuver with my hands. I don’t think my mother asked me what I was doing in a tone that wasn’t angry and shaming. I am not good and reading tone, but I do get the “you should be ashamed” tone in Russian. The EEG found nothing, and my mother actually deny that I ever had this test. I found documentation about it once, so i know it wasn’t imagined.

Even the child psychologist I was sent to (because my grandmother was physically abusing me) didn’t say a thing about maybe being on the autistic spectrum. I was a girl.

Girls don’t have autism unless they can’t talk with their mouth. They can be shy, weird and magical — and shy girls are cute. Girls should be shy, especially if they are Jewish and Russian.

She just can’t be autistic. She is too stupid. She is too smart.

Previous part: Abuse and Normalization

Next part: Awareness and Acceptance

Tips for autistics on going to pride parades

I was in Jerusalem’s pride parade 2 days ago, and had a very interesting experience. This is the 3rd pride parade and my 6th queer protest activity I have participated in. I don’t have much experience, and some of my tips may be useful only for some people, but some I hope you will find them to be useful. The tips can be used by non-autistics, of course. Most of them are common sense, but I may be wrong.

1. Bring with you water and snacks. Water is extremely important, especially if you are going to shout things. Remember to stay hydrated. Snacks can be useful to keep your energy level. This is EXTREMELY important. Even if you don’t live in a hot place like Israel, you can still be over heated. Your safety always comes first.
2. Bring stim toys. Some accessories (especially in pride-related protests) can be used as stim toys as well, but it is always good to have your trusty putty or chewing pedant. Also, don’t be afraid to use vocal stims, it is so noisy no one will bother. I actually used my recording app to narrate some things that I thought, because it helped me to deal with the stress. Use whatever suits you!
3. Noise blocking is always a good idea. Even NT’s use earplugs in protests, and noise protection earmuffs or noise cancelling headphones can be great as well.
4. Know the plan, but remember that protests don’t always go as planned. It is always good to have idea of what is going on, where everyone are going and what to do next. If in doubt, go with the flow. You can also print yourself the plan or use your phone to check what’s going on.
5. Have several friends to march with you. This can be a good idea since you can remind each other to drink, help each other to navigate and just feel less lonely. If you go alone, you can still make “protest buddies” on the spot, if it is something you can do.
6. Stay away from cops…unless you need help. They can help you if you need them, especially if they were called to keep your protest safe because it was registered beforehand, but it is better not to interact with them unless need them. Cops can react in weird ways, so be careful. Show them your bag if the security requires so in the beginning of the parade, and use thank you if needed. Some police man are nice, and will help you if you ask them for directions. I got a lot of help from policemen and policewomen when I needed it. But if the protest is not registered or has a strong anti-police undertone, it is a good practice keep your distance.
7. Know how to arrive at the protest and how to go back. Getting lost after a stressful event is scary.
8. Have a backup plan. I couldn’t leave Jerusalem after the parade was over because I was too tired — but I had a place to stay overnight. The public transportation was wacky because of the parade — so I used a taxi to get around. These are small details, but they are very important.
9. Don’t waste your phone’s battery, You will definitely need it — for navigation, calling people or ordering a taxi. Don’t use it to go on a Pokemon hunt, and keep the location and Internet off while you are not using it. A phone is a great tool for finding solutions for acute problems like calling for help, locating people or just figuring out where is the bus stop.
10. After the march/protest is over, take some time to rest before going home. You will need the energy for navigating the change in the mood, or just to readjust to the change of pace. Eat, drink, and talk to friends.
11. It is OK to leave early, or even to cancel plans on the last minute. There is no shame in feeling like you can’t handle things anymore.
12. Safety always comes first! The revolution is much better with you. Remember to keep yourself as safe as possible. If you feel like it is better to take off the rainbow accessories after the parade, do it. If you are afraid of other people, ask others for help.
13. Have alternative means of communication. Regardless of being able to talk or not, it is better to have more then one way to express words. Have a pen or pencil and a notebook, have a Text-to-Speech app on your phone, have a pre-printed paper with some things written on it. Just one additional communication method is enough. Choose whatever works best for you. If you lose speech you will have other methods. If your app stops working you still can use penpencil or the pre-printed papers.
14. Be careful with your spoons. Don’t overtire yourself. Make arrangements to sleep at a friends home if the parade is in other city. Rest in the middle of the march. Take some anti anxiety medication if needed.
15. Have some people know where you are. Message friends or chosen family members that you are in the pride parade. Message them if something is happening, and when the parade is ended, so if you will need help — they will know where you are.
16. Know in advance where you can exit the parade and where you can get medical help. Some parades are open, and you can join in and opt out in any point. Others are very heavily guarded and have only one exit point, or even none. It is very important to know where you can leave the parade if you want/have to. The same goes with knowing where are the medical help troupes are parked — so if you need them, you can go there before things get messy. (suggested by Genia)
17. Have a card/paper/bracelet that explains your condition. If you find yourself in a situation in which you might need help from strangers or the paramedics — it might be a good idea to let them know about any relevant condition — even if you can’t talk right now. You can print a paper with several crustal phrases, for example: “I am autistic. I can’t talk and I flap my arms when I am stressed. Please don’t touch me without telling me.”
    If you have epilepsy andor diabetes andor other medical condition that prevents you to communicate at all while seizurehypoglycemiaetc it might be a good idea to have a bracelet which states it. (suggested by Genia)

Pride, love, life and acceptance for all,

Ponetium.

(A selfie of me and my friends)

Why I wasn’t diagnosed as autistic in childhood? (Part 2/5)

Black and white photo edited by me to look brown white. It features a young soviet schoolgirl, probably from the early 1980’s. She is wearing a brown dress with a black apron, the casual school-girl uniform. I am not sure about her race/nationality. She could be Slavic but she also may be from a Semitic heritage. I found this photo in a multiple places on the web and I could’t find it’s owners.

TL;DR: Because I was (am) an immigrant, from abusive and normalizing family and (misgendered) as a girl. Plus, there was lack of awareness in general. This is part 2 of 5 part series that answers that question. Every part will deal with another element that explains why I wasn’t diagnosed till I was 25.

CW: force feeding, abuse, vomiting

2. abuse and Normalization

I put the picture of the Russian school girl not because I looked that way (I went to school in Israel, where school uniform is rare at secular elementary schools). I put it because I was expected to be that school girl. It was the perfect child that was taken away from the female part of the family;

• With neat hand writing (my hand writing was compared to chickens scratchings in the dirt).
• One that can dress neatly and stay neat during the day (I remember more when one hitting because I came home messy, and to this day I can’t stay neat to a long time).
• That has always perfect grades (mine were… good, but never perfect).
• That can finish copying everything from the blackboard in time (a thing I just can’t do. I stayed long after school to finish copying, and I was scolded for copying too slowly, even though I tried my best.)
• That can do the homework swiftly and neatly (things constantly fell out of my hands… well, they still do).
• That can concentrate in class.
• Not to make mindless mistakes in math because I didn’t payed attention and mixed up 2 or 3 questions together.
• Etc’

I wasn’t that child. I was expected to be one, but unlike my always perfect friends and relatives, I could never be one. I couldn’t even be an average child (with good grads, they were obligatory.

In a way, I was a nightmare of a child.

I would meltdown after I was told to do something. From my point of view, I wanted to do something and planed to do it in my head, when forget to do it. I would melt down crying I hate doing things twice. Even though I did it twice only in my head.

I would take off my pants before going to the bathroom, even in our neighbor’s apartment.

I knew nothing about social cues and communication, but it wasn’t seen as a problem. Because all my hardships was seen as laziness and attention seeking and bad behavior. And my grandmother had one universal solution for every problem — some good old scolding and hitting. So, I had to learn to behave as normal as I could manage. I sucked at being normal, or perfect. But I tried my best.

Some might not agree that my family was abusive. It is OK. I thought they weren’t abusive for a long time as well. But my experience is that they were abusive and tried their best to normalize me(from the best intentions, because loving people abuse as well).

I wasn’t only a weird kid who tried their best to be perfect. Things were really messed up because it wasn’t only hitting and scolding, a thing everyone I know grew up with. I had no autonomy over my body at all. In my eyes, it wasn’t mine.

Like many autistics I was a picky eater. I use past tense, because it was forced out of me. Picky eaters usually refuse to eat certain foods because of the texture, smell or… well…just because food X is touching food Y. 
I was somewhat underweight while I lived with my parents and without my grandparents. My dad knew how to distract me so I don’t notice too much what I eat. I wasn’t an extreme picky eater. But I was picky. So picky that at some point in my early childhood (about 5 years old) I had high cholesterol levels, because all I agreed to eat was eggs, fried liver and olives. I agree that it wasn’t healthy at all. This, and the fact that I was too skinny really helped to “convince” my grandmother into force feeding me. And by force feeding, I mean violent, manipulative and traumatizing force feeding. I already talked about how I was forced to drink tea for years. Force feeding me wasn’t different. 
If I gag or even puke — I get shouted at, slapped or threatened that I will be forced to eat my own vomit. Also, I would be given more food. I was told I am doing it on propose. So I ate and tired my best to ignore my nausea. 
If the food tasted spoiled or just wrong and said it I was told I am lying and that everything is fine and I should eat it. I am very sensitive to the “spoilage” of food I taste as spoiled by me usually tastes this way only a day later to other people. But I figured it out only when I moved out of my parents home. 
The same was if the food was too hot (or not worm enough in my grandmothers standards, even if I liked the temperature).
My grandmother was sitting in a way it would hard for me to escape, if I try. If I ate too slowly (always) or stoped for several seconds and wasn’t eating constantly I was force fed. Or if I refused to eat. Or if I said that the food is spoiled, to hot or have a wrong taste. I also was threatened to be feed via Zonda (a feeding tube that goes from your nose or mouth to your stomach). It never happened, but it was scary (I am not sure about eating my own vomit, thought. I remember forcing my self to eat in in some point because of the shame and the fear. I think it happened, but I can’t be sure). I know it is not my imagination because my youngest sister is still treated that way.

If you say that force feeding is not an abuse, please, ask someone to hold you, shove spoons fool of too hot food into your mouth, and to do it with a too big spoon, so it scrapes the roof of your mouth, in a tamper that is too fast for you so you barley have time to chew and swallow. Ask them to hold your mouth open by pressing your cheeks. To hold your hands so you can’t stop them. To shout at you and to threaten you. And also accuse you at their health problems, because you make them so worried. Fun, isn’t it?

So I couldn’t afford to be a picky for a long time.

If I stimmed while near the table I was mocked for it and told to stop. Again and again. To this day, food is a symbol of violence for me. And I have lots of other issues surrounding it.

The food part is very easy to explain, but being picky eater is a symptom that many non autistics have as well. But the thing is that I learned in a very young age to ignore my body and my senses and my feelings. I made myself believe in what I was told. To this day it is hard for me to acknowledge what I feel if someone says I feel something else.
I was not really feeling nausea. The food is the right temperature. It is not spoiled. And this mental tool “helped” me to suppress anything inside myself. I never trusted what I felt and if someone else said that my perception of things is wrong, that they must be right. And I also learned to obey. To hide my self. To be still. To shut up. Not show any physical reaction.

My sensory sensitivities with smell and taste were just invisible. I remember my grandmother cutting a cucumber for me. I like cucumbers. But then, she puts salt on it. And I don’t like salt on my cucumbers. I ask my grandmother not to do that. “But it tastes better that way”. It didn’t. When I was old enough to be allowed to make myself salads to lunch it was forbidden not to add salt to the salad. I don’t want to talk about all the constant mockery and shouting around the table (thought, sometimes my grandma told stories about her life, and they are fascinating indeed). It was harsh and painful. It was about me organizing the food on the plate. Or trying to eat just one given thing at time (“you should eat everything at once”). Or not putting enough food in my mouth at once, or staring blankly and not eating, or doing some sounds or moving my fingers or sitting the wrong way. I also wasn’t allowed to drink while I ate, because my grandmother thought it is a way to cheat in order to eat less. To this day I ask permission to drink while eating.

So even if I had some tendencies to show clear symptoms like repetitive behavior, being picky, having hyper sensitivity, wanting to things in a very certain order, they were invisible because I was just pushed not to do them, but to do and feel what I am told to, even if it feels bad, and I don’t want and I cry and try to run away. I was spanked and threatened so I obeyed.

It was about surviving. Being not me was the only way to survive, killing little parts in my personality each and every day.

Previous part: Immigrant

Next part: Girl

Why I wasn’t diagnosed as autistic in childhood? (part 1/5)

Map-flag of the USSR in red and gold. Source: Wikimwdia commons

TL;DR: Because I was (am) an immigrant, from abusive and normalizing family and (misgendered) as a girl. Plus, there was lack of awareness in general. This is part 1 of 5 part series that answers that question. Every part will deal with another element that explains why I wasn’t diagnosed till I was 25.

1. Immigrant

When I was 2.5 years old my family immigrated from the former USSR to Israel. We ran away, without looking back, and have hidden the fact we are leaving, till … well, my family was forced out of the train, 4 kilometers from the border with Poland.

So we came to live in Israel, the best place in the world for you, if you are Jewish, Ashcenazi, White and was born here or at least, born in a “good” country (not the former USSR). I, like every other immigrant, had some hardships. The language was hard, the food was different, everything was humid and noisy.

I was a weird kid. I seemed sort of detached from things, and even though I was sort of hyperlexic in Russian (I think. I don’t remember being actually taught to read. Not that I was a great reader, or that my reading in Russian improved much since then), I didn’t talk much in Hebrew. At least, at first. I seemed shy, I couldn’t do things that others did. My friendships were odd. I had couple of “Russian” friends, like me, but at retrospective, we were friends because we had a similar background. I was always confused by things that happened. I was confused by their way of seeing the world. I was quite good with imaginative play, technically, but I always went too deep inside it, in my head. I could play with myself and I struggled with explaining others my…thoughts. I couldn’t understand lots of things they tried to say, but it was OK. Sort of. My inner world was anyways bigger then my outer one.

At school (first 2 years) I had several weird hardships. It took me really long time to copy things of the blackboard. I wasn’t “hearing” what my teacher said (I was even sent to a hearing test). I could jump, thing I couldn’t do till I was 5, but my motor skills were … wrong. I could draw quite well, but my handwriting was horrible. Things always fell from my hands and table. I were wandering alone a lot in the recess time, not because I didn’t have friends but because I was busy running between different groups of kids, interacting for a little, sometimes forgetting that they were not part of my game. I “wrote” a musical inside my head about cats. I preformed a play I invented by myself with my “Monday” friend (a friend I hanged out with specifically on Mondays) about an alien girl who comes to the human world. I peed my pants at least once in school because I wasn’t allowed to go to the bathroom, or maybe because I didn’t knew how to ask. I also had a friend who was several years older then me, and I remember just taking of my pants more then once before going into the bathroom, at her place. At 6–7 years old. I also wet my bed quite often. I think I completely stopped wetting my bed when I was 10 or 11. I had no shame and could undress without actually thinking about it if I was by the sea even at age 10. But I have lots of shame right now to cover it up.

When I was 8 we moved, so I had to go to a new school, tho the 3rd grade. And then my social disaster really started. I was one of the only few “Russian” kids at school, and I staggered in “making friendships”. I was friendless or just with one or two friends (that most of the time were not real friends, just people to walk around with in recess). I had 2 meaningful friendships. Both of them on crushes I had, the last is my partner nowadays (we are together from high school), the first… was a friend only after the school, and it ended after the 6th grade.

Till the 6th grade I played with children much younger then me. I sucked at the outdoor games that others managed so easily. I walked around and mainly played with myself. I had friends for short time more then once, but just couldn’t keep them. One girl actually declared me as her enemy, and hated me very much, till we were in different schools, after the 9th grade.

At the middle school… I became a true outcast, not only I didn’t have any friends, but also I was very heavily bullied (physically, emotionally and sexually, usually on a daily basis) by people, or strongly ignored. I was considered the ugliest person on the planet, and people picked on me all the time, even during classes. I tried my best to fit in, but I just didn’t knew how. I don’t want to talk much about it (you can read some of it here) because it can be summarized as a “social disaster“. I actually have no idea how I survived this.

At high-school I wasn’t bullied, because it was a thing that you just don’t do. But people ignored me and I was considered to be a total weirdo. At 11th grade I became my SO’s “girlfriend” somehow, so I could hang out with his friends. But I didn’t belong and I was “that weirdo who is the girlfriend of that cute goth-geek” (we were a geeky class). I tried very hard to make friends, but I just was failing again and again in “doing it right”. I made many mistakes, that I knew was mistakes after short time, but the problem was I never could actually find the right answer. I was more then awkward, I was seen as crazy. I openly self harmed because the idea that people see me was quite foreign to me. My executive dysfunction came visible, but I managed somehow to have good enough grads (sometimes with the help of a tutor), so I was just thought I was lazy and stupid.

During my 12 years of my basic education, I was a social outcast in 10 (the first two were weird but fine, sort of. I wasn’t bullied much in them).
But all that time, my struggles with the social world and my inability to fit in and have friends was seen as an outcome of being an immigrant. Even when other kids around me, who were from a similar background were socially accepted. No one had seen my struggles with physical movement at all. My stimming was somehow invisible, even thought I didn’t knew I should hide it. Oh, I was sent to a psychologist because I was bullied (?), and I went to a diagnosis test in some organisation that said I “just need some tutoring” (because I couldn’t understand some things I missed in class due to sensory issues, executive dysfunction and my total inability to do classwork in class). That organisation, BTW, missed one of my partners very visible dysgraphia and dyslexia and said he is just lazy, so my opinion on them are not good. My sensory issues were overlooked, or seen as being a provocative or just attention seeking (more about that in part 2). My special interests and routine requirements were invisible as well. The interest (and obsession) in books was seen anyways as something “russian kids tend to have”, because the stereotype about “Russian” immigrant children is that we are all dorks, criminals (both for “Russian” boys)or sluts (Most “Russian” girls. I was exception because I was considered extremely ugly). It seemed normal that someone like me would be weird, bullied and friendless, and will fail to adapt.

Because I am an immigrant.

Addition about what was after school years: Because I am legally an adult since I became 18, seeking help and diagnosis was my responsibility, so it is added here just as an after thought:

In the (obligatory) military service and after school education — My hardships continued. I couldn’t do classwork in class, things fell from my hands all the time, I wasn’t creating an eye contact (I may write about that in the future), I was bullied and couldn’t really make friends. My executive dysfunction that was somehow manageable in high-school became totally unmanageable, but I had depression (that went undiagnosed as well).

Next part: Abuse and Normalization

high functioning autistics / low functioning autistics

-A is autistic. He is working on his Masters degree in a university and is in a stable relationship and has been for more than a decade. He lives with his partner and they share the house chores. He has a good relationship with his supervisor. Also, he is an administrator of a forum, a blogger and has various hobbies such as drawing and writing. He likes to cook and to visit friends. He is talented in the field of biology, and many people appreciate his creativity. Sometimes he is a little nerdy and quirky, but his friends appreciate and like him. He has some certificates of excellence and can be considered as a contributing citizen.

-Y is autistic. She lives with her partner, and also is also studying for an academic degree. In the past she tried to complete a degree in another profession, but was kicked out because she was considered “weird”. She tends to avoid spoken communication with people, and has no friends at the university. It takes her a long time to submit assignments, and she tends to get confused while doing her job if someone is talking to her. She goes everywhere with noise-blocking headphones. Her supervisor has to constantly direct her, or else she becomes lost and confused; even though she has a relatively good intellectual ability — which allowed her to do a degree, she is quite a disaster in every other field. She has no social contacts at the university. When she returns home, she often collapses in exhaustion and sleeps a few hours before she can eat. Often she needs help from her partner to sit down and eat, she finds it difficult to bring herself to do it alone. She has often meltdowns, during which she cries and bangs her head against the wall. Because of the stress she is under sometimes she misses days at the university. She needs reminders to go to the bathroom, take medication and eat, otherwise she forgets. She can hardly fill out forms, and does not have the ability to sit in a student’s chair without her things falling off all the time. She cannot live alone or take care of herself, and the fact that she has managed to remain at the university until now is pretty much a miracle. Her family considers this to be one of her greater achievements, however they are ashamed of her and her behavior around people.

So, who is high functioning and who is low functioning?

Nobody, because these are harmful criteria, that hurt autistics and ignores their strengths and needs.
 Nobody, because both of these people are…me.

~~~

I humbly thank Cynthia Kim for inspiring me to write this post. She did it first (and way better, BTW), and she is awesome!
 I also Humbly thank both my live-in partner and my lover for the proofreading for helping me with grammar.

Originally published at queerloli.wordpress.com (my other blog)on March 26, 2015.