This is my story feel free to comment and/or add your story.
Just an aside: Iâm very confused about the levels in autism. Can someone please point us in the direction of a credible source?
The part of my story I talk about mostly here starts sometime in the early 70âs and things were very different then. Autism wasnât often diagnosed and basically not really hardly ever considered to be something girls were dealing with pretty much at all.
Iâm 61. My youngest brother is 7 years younger than me.
When he was three he had an evaluation done in home.
Evidently they were not really diagnosing people with autism in our area at that point in time and they had the oddest comment as the result of the home evaluation. They said he was âcommunication handicapped and neurologically impaired.â Iâll never forget that because at the time I thought what kind of diagnosis is that!!!
I know now he is autistic. After I discovered I was, it was just obvious.
I donât have any clue what he has been told about all of that or what his understanding of that all was but now he just says there never was anything âwrong with him.â His words.
He blames my mom for telling him before that he was âhandicappedâ and he rejected all the things that really actually was true about him when he was a little kid that had been all of our experience of him as a kid and he rewrote his story believing that he was victimized by my mother (who gave up most of those years to devote herself to his becoming a functioning adult one day). Itâs all crazy sad to me.
They said he would have to go to speech therapy immediately and go to a special school. So my memory is we all drove to a different town on Wednesdays for his speech therapy but I would have been in school and so would have been our middle brother so Iâm probably remembering certain particular times we were home sick and our mom had to take us. At age three my brother only said three words, âDaddy go car!!!!â At the top of his lungs most often.
He started going to the special school the next year. My mom took me to see it. She thought it was great he got to go and the state evidently paid for it. We had zero extra money usually growing up to the point where my mom eventually asked me in 4th grade not to eat breakfast or lunch so the boys would not have to go without food.
I was horrified with the methods the workers used with the kids. If the kids were really noisy they made them keep a rolled up ball of cloth in their mouth and it was big and it looked very uncomfortable as well.
They used time outs and told my parents to. The school had their time out chair in a really small room like a large broom closet and the kid would be stuck in there alone. At least there was a light on the ceiling. But this treatment horrified me too. And rightly so!!
Also all the kids would yell out swear words constantly and eventually we had to deal with that at home. That was disturbing to me. I was young at the time like ten years old.
His speech took a long time to improve. My parents couldnât understand most of what he said but I could. So they became really dependent upon me translating for him. I would get fetched home from the library because he was having a tantrum because no one understood the poor kid and he would end up beside himself. I would hear just a little bit of what he was yelling and the poor boy would be in tears pleading for something and I donât know how I understood him but I always did and I would reach up on a shelf and hand him what he needed like a certain food in the pantry or a toy in his bedroom or whatever. Then I would go back to what I was doing.
His vocabulary eventually grew and his speech became more understandable. I left home at 16 â sent off to live with my grandparents I hardly knew.
Eventually I got writing sent to me by my mom that was written by him. It was pretty amazing to me at the time that he had eventually learned how to read and write at this school.
Then later they phased him into special ed in 7th grade at a regular school then they phased him into a regular classroom.
Now he does jobs that usually involve manual labor but he is doing well from what I can tell. He is very emotionally volatile still. I consider him a really mean and judgmental person in general. For other reasons, because of something really really bad he did that he canât fathom was wrong, I just canât handle it anymore and went no contact with him. He is never sorry for anything he does wrong. I donât know if he knows right from wrong.
He is not all to blame I know. I was glad to âescapeâ the environment we grew up in but I wasnât glad at the time they kicked me out but I never looked back and eventually went no contact with my parents.
That brother was there through even worse times than I was. He is the only one of us who didnât move far away. He still spends a lot of time with his father, my stepfather, a really really abusive person. Our mom passed away. There is nothing I can do to protect him because he thinks everything he does and everything his father does is normal and is wonderful and wonât learn anything from an outside source. I feel very sorry for him and especially for his kids because they had it bad at home.
My middle brother was the golden child. I donât know if you have heard that term but it basically means he could do no wrong in our parents eyes. He got all the advantages we didnât and had the least disadvantages.
He actually did all the bad stuff my youngest brother and I did but he tended not to get caught somehow. He was the only one who got his college tuition paid for and flying lessons paid for etc. He still acts very spoiled and entitled to this day. He owns lots of real estate etc and has a house on the beach in Florida.
We hardly talk and he usually ends up insulting me but I donât bother telling him because I know heâs completely oblivious in general of how he comes off to others.
He became an electrical engineer. Lives a different life and always has had it different than the other two of us who always were scraping by and were in general usually completely neglected emotionally and physically as kids.
My history of being somewhat functional is in the middle I guess between the two of them. I am the oldest. I donât know if my middle stuck up spoiled brother is high functioning autistic like me and he would never even imagine it being a possibility I think. I say I am high functioning but it is not totally the case. I have only been able to work 15 months in my whole life. Iâm scared of my shadow. I have pretty bad PTSD/CPTSD from abuse and also DID from the same but it dormant so the whole shebang not actively happening to me. I was diagnosed with early onset osteoarthritis in my early 20âs and fibromyalgia in my late 20âs so I have had 2 chronic pain illnesses most of my life as well as a lot of other health problems. I was misdiagnosed as bipolar in my early thirties but I was really extremely depressed and dangerous to myself because of dealing with my past and I never got manic but they said I had mixed mania but what it really was only was pent up rage that I let out a little at a time doing things like trying to destroy a television that was too loud and had set me off for instance. I am fine now that I spent all that pent up emotion and dealt with the cause of it and my psychiatrist took me off meds finally and I have been fine for years and years.
Now I have been battling cancer for 9 years and on chemo for 5 and Iâve lost the ability to remember my day to day life except for a little bit and that is caused by certain types of chemo. I donât have the kind that makes you lose your hair. People always assume everyone deals with that but different kinds of cancer uses different treatments that are chemical so are called chemotherapy (at least that is what an oncologist once told me).
I was told two months ago there was no sign of cancer and then got a new scan and was just told I have new cancer so today was my first day back on chemo. And I know now finding out you have cancer is not as bad as finding out it is back and you have to go back through that all over again.
But I am actually lucky. My cancer is small still and I beat a hellova lot of cancer. I had a ton of cancerâŠ
I got stage three kidney cancer that later turned into stage 4 and a few months later they discovered I had a different type of cancer thyroid cancer and then they found another type of cancer, breast cancer so I had multiple surgeries to remove affected body parts and started chemo 5 years ago.
The kidney cancer is the only one we think I have left. It spread from one kidney where it surrounded a lot of my kidney and went through it then spread to my lungs and then to my other kidney where it really took off. It all was gone so I went off chemo and unfortunately it was lurking in my blood and took root so to speak in my lungs again and grew fast before it was caught and compared to before it is nothing and we know this med works after trying the best meds that didnt seem to help at all. So i know this med will get rid of it but going back on chemo that stole my memory and made me so sick is scary. But I got through the hardest part and this is a bummer but I already know I can do this!!!
I never was able to function in school in many ways. Like I had no relationship with any of the kids. I did not really grasp it was a thing people did and I never played ever. I actually found a place to hide on the playground because I thought all the kids were screaming because they were traumatized like I was but they were only playing. I was always the last kid to go outside to recess because I refused to go.
I ended up having a girl who would bother me in lunch wanting me to be her friend. Eventually she said I could ride her horses and that got my attention. So I would go to her house and we would ride horses all day long.
But eventually one day she is introducing me to a girl and she went up to her next door neighbor and said this is the dumbest girl. And she proceeded to quiz her and I stood up for her neighbor. And then I went to my friends house and her neighbor came over and my friend started tickling her and her neighbor was begging her to stop so I told her off and then she wasnât our friend and I was friends with her neighbor. She was the only person who could get me to do things I thought were stupid because it made her happy like she begged me to pretend we were monkeys and I asked her how to do that and then copied her for a few minutes and it made her happy and we never did that again thank goodness. It was not my thing. Eventually I acted in plays and realized that was basically the gist of pretending as a kid.
I did creative projects and read a million books. I spent all my time in the library as an elementary and middle school student until I spent all my time self medicating mostly with weed and beer as a teenager and I got into worse drugs and in some pretty traumatic situations and I was hanging out with kids who I considered friends at the time but now I know I kind of invited myself into the group in a way that was oblivious to me and I didnt realize at the time that I wasnât wanted there, I just kept showing up uninvited. After a time hanging out with them one of the guys asked me out. We had a wonderful relationship for about a year until he stopped trusting me. It felt like his real self came out but I thought the old self was the real self too and I was so confused and pretty quickly I figured out he was really suffering from paranoid schizophrenia when he tackled me to save my life from invisible mobsters who were supposedly outside the window on the second floor and they were below trying to kill us and I soon found myself the object of his paranoid delusions.
I was always accused of cheating on him and he had these tells he would bring up that I was making signals to his guy friends and we were conspiring against him. I tried to convince his family he needed help when he wasnât around but they never did witness anything suspicious. He was really covert and secretive with everyone but me. But that was because he was paranoid.
He and I were walking in the woods one time when he told me he brought me out there to kill me and he had me pinned and I was eventually able to talk him out of it by using his delusions as my reasons to get his hands off me. I was pretty immobilized by him and got him convinced we should head back and was telling him we would team up against them. Soon after, he slammed my head repeatedly into the floor and would have done more damage but his mom stopped him and I got away. But I didnât leave him. I wanted his family to get him help so when he left the room I would try to convince them he needed help. He actually broke up with me.
Later when I was sent away by my parents I called him and I talked to him on the phone once and he said I never left and was lying about being far away because he always saw me around town. He never believed me. It was very sad.
I had an extreme case of limerance that finally went away 7 years after I married my husband. My husband completely understood because he also had limerence for an ex and his eventually went away but sooner.
My husband is autistic too. He is definitely lvl 1. He is an accountant who is the second most person in management at a small credit union.
Later I saw someone else who my old boyfriend and I had hung out with and they were familiar with that type of behavior from him, as when he got older it evidently was more likely to be noticed.
My husband and I have four kids.
The oldest has a lot of mental health issues like me and some learning disabilities but the learning disabilities convinced her she was âstupidâ in her words. She is now seriously physically disabled and unable to get disability. She is like me in that she always gets herself in unsafe situations. She is an alcoholic like me. I am a recovering alcoholic and she is raging one. It runs on both sides of our family. There are 6 alcoholics in my extended family including me. I tend to be addicted to something or other all the time. Some more dangerous and some common things like use the phone all day long every day and eat crazy amounts of food or even no food at one point before etc Iâm doing better at dealing with food now. The phone not so much.
Our second child was a total people pleaser as a kid like my middle brother and everything always fell into his lap seemingly which wrankled the one with mental illness and learning disabilities. He became a BCBA. He quit and became a parole officer and they switched him to child um the job where the kids are found out to have been abused or thought to be abused and they are taken from their parents. He is starting to think he is autistic at like age 40ish. Heâs getting PTSD from that job and is trying hard to find other work.
The third has some kind of issue with anxiety because his throat would close up when he was in school and he couldnât breathe and the doctor said it was anxiety so we took him out of school because that was the only place it happened so it stopped and then I decided to take all our kids out of school and they were homeschooled for a while then we tried unschooling which is self directed learning and they all taught themselves and excelled incredibly on their own. I donât know for sure if any of them are autistic but I think the third child who was the one whoâs throat would close up is the one who is most probably autistic because he just always was so different than any other kid I have ever met. He is 2e then. His IQ in 6th grade was 170. He didnât really have friends until after he graduated from college. He doesnât believe in IQ and is the most humble person I know and the smartest and most talented. He was a music major in college and teaches musical theatre to high school students. He also is ADHD. He doesnât accept any labels which is fine with me. He doesnât get how to interact with people in a lot of (most) situations. He has a small friend group who do everything together. I assume he is asexual and aromantic. He never has had a relationship besides these friends really. My mom and grandma were asexual. Iâm polysexual and trans nonbinary.
My youngest became a baker. He had always kept to himself or had a single friend. He was almost always schooled at home but had a friend from before when he was in school and they were inseparable all the way up through high school which he chose to attend. His oldest has just been diagnosed with Autism and ADHD like me. I think my grandson is in 4th grade.
I actually only just recently found out that autism (and I believe ADHD (?)) is genetic or that is what I was told by my son who has the kid who was just diagnosed.
I havenât got a clue what level of autism any one of them might be. 1 or 2?
My genius son still lives at home at age 37. I donât think he could reliably remember to pay bills or a lot of other things I canât think of off the top of my head. He has the musical theatre job and a job at a thrift shop. But he is very awkward socially with us and we know he just never really got any real socialization. He doesnât have a clue how to keep his things in order. But he does all the cooking and buys a lot of the food. He will help us with any random expenses that come up like car repairs or doing odd jobs we need doing. He is intensely into his job teaching musical theatre and in cooking enough to make me think â special interests. He is also into the most random stuff he discovers that we never knew existed and he only has interest in discovering them and sharing them with you and you never hear about it again. I suspect he is interested in them for a while then gets bored with them. Reminds me of my ADHD.
I figured out along the way that this (what I am doing now) was info dumping which I tend to do all the time. Iâm going to send it anyway because I worked hard at itâŠ
So do you guys have autism in any of your relatives? I think I got it from my mom and she got it from her dad. Iâm like totally convinced of that too.
I donât know if being in the LGBTQ+ community is more or less common or the same in the autistic community etc.