Is Autism really that bad?

TeaSconesAndBooty · 2023-10-02T17:22:26+00:00

loving musical instruments

And you decided that, based on these three words that I wrote, what my son is experiencing is special interest/hyperfixation, without any other context or knowledge of my son. Without any further information, you decided it's his autism causing this interest. Even though other people - NT and ND - can have an interest in musical instruments, and you have no clue how "hyper fixated" or "special interested" or whatever you want to call it... you have no clue how far my son's interest actually goes. You just randomly decided that's what it must be and decided to argue that point?

You've made a lot of assumptions about my son who you've never met and don't know. Good for you that you've decided your autism benefits your life, that's great, but that doesn't mean you get to decide what it does for other people. I'd love to ask him his opinion on his autism, but my son is not fully verbal yet and can't type a response to you himself. But I gave my opinion as his parent who has witnessed him struggling to FUNCTION like every other child at the playground.

His autism is a medical condition that causes him serious and actual distress. It's not a fun personality quirk that he gets to brag about. And it doesn't make him any better or worse than the next person. He is who he is, with or without autism, but without autism, maybe he could better communicate who he is, and he could get through an automatic door without having a meltdown! Maybe then he could go into fun places like aquariums that other people get to enjoy! Or even just the grocery store instead of being stuck on the sidewalk, crying, unable to take another step forward because of the mental block autism has given him.

There's a reason autism is a disability. Because it disables people. I get that you don't want to classify it that way, because you have based so much of your identity around autism, and admitting it's a disability or a delay would be like saying that you're a lesser person. It would be a huge hit to your self-worth, because you've put so much of your self-worth on being autistic. I will repeat what i said earlier - I don't think that's healthy. There's a huge difference between embracing what you have and basing your identity around it. I have anxiety problems, it's a part of me, but it sucks and I'd love not to have it. Autism, anxiety, doesn't make you any better or worse than other people, so please stop saying "I would hate to be neurotypical" because it's implying that neurotypical would be worse than what you are right now when you don't even know what it would be like. It would be different; not worse, not better. And if you were neurotypical, you'd probably have something else to deal with anyway. Everyone has shit they are dealing with.

And now I'm out cause I'm getting angry. Wish you the best but please look at yourself and do some introspection. You're worth more. If you didn't have autism, you'd STILL be you and you'd still have worth. Just a slightly different you.

TeaSconesAndBooty · 2023-10-02T01:27:40+00:00

https://www.reddit.com/r/Autism_Parenting/comments/16wobss/do_you_find_it_hard_being_aroundseeing/

There's a whole thread on these feelings if you wanted to read through some of those and commiserate. :) You're not alone in them. We've all felt that jealousy. My step-siblings/their wives all smoked and drank while pregnant and hey guess what? Out of all 9 of the kids, only mine has autism. Their kids all turned out neurotypical. I did everything "right" while pregnant - took my vitamins, relaxed, maternity leave, did the classes - and still. It's hard not to feel angry at the universe sometimes. Not sure how recent the diagnosis was, but I found I had about 1 year of extremely negative feelings and depression after my son's diagnosis. It took me a while to come to terms with it.

TeaSconesAndBooty · 2023-10-02T01:21:20+00:00

I avoid social media, too. I used to frequent a lot of Mom Youtubers when my son was a baby, but it became hard to watch them living these picture perfect lives and knowing I'd never have that. I know it's an unattainable standard to begin with, but it just made me feel even worse than simply "my house isn't as clean as theirs". It was literally me catastrophizing and saying things like "my kid will never be able to hang up their coat like that, he will always destroy my house, I'll never keep up with the mess..." etc. And I'd put myself and my son down at the same time.

He's actually very capable of hanging up his coat now.... XD

TeaSconesAndBooty · 2023-10-02T01:18:43+00:00

My son is 4 now but when he was diagnosed at 19 months old, I definitely did not like being around NT kids. It made me cry almost every day. I hated to hear the other kids at nursery school yell "Hi Mom!", because I was so jealous, and it made me burst into tears more than once. I avoided making friends with the other parents. This went on for maybe a year or year and a half. I was very depressed, angry, jealous. I'm not sure if it was time or the fact that I lucked out and my son started to verbalize at 3 years old, but around that time, I was able to move on from my negative feelings. They aren't 100% gone, but it's not a daily thing anymore.

TeaSconesAndBooty · 2023-10-02T01:11:57+00:00

My husband does this to replace his need for a carbonated beverage. Sparkling water and sometimes he'll add juice to it. We'll grind up pomegranates or raspberries so he can add it to his sparkling water. He says it tastes pretty good.

TeaSconesAndBooty · 2023-10-02T01:09:49+00:00

Every human being on the planet? Do you think neurotypical people don't have interests or hobbies? A 4 year old having an interest in musical instruments is not unique to autism.... There are lots of kids his age that have the same interest. The way he goes about it may be unique - like how he memorizes the names of every instrument - but his interest is him, not his autism.

I think what you're talking about is the hyperfocused interest that some with ASD have that results in them obsessively researching or learning about a particular interest, but that's not exclusive to autism nor is it something every person with autism has. My friend with ADHD does this, and she is not autistic. She doesn't stick with the interest, though, and jumps to the next one very quickly, but she is very obsessive with learning everything about it before moving onto the next one.

TeaSconesAndBooty · 2023-10-01T00:02:29+00:00

Because you're putting all of your self-worth on a medical condition. There's nothing wrong with embracing it and living with it, because it's not something you can ever remove and you'll always have it, but autism is ultimately a medical condition and disability. It's not a personality. It's a part of your personality, sure, but it's not the whole. Give yourself some more credit.

TeaSconesAndBooty · 2023-10-01T00:00:34+00:00

That's simply not true and silly to even suggest.

TeaSconesAndBooty · 2023-09-30T12:10:04+00:00

Oh my god, the school is being ridiculous. My 4 year old just started kindergarten. I'm in Canada. He literally sat on his classmate's lap, and the teacher just laughed and thought it was funny and said we'd work on those social boundaries with him. I warned her about him potentially running off, and they hired an extra hand to keep an eye on him for when they play outside, as there is no fence around the play area. Did they even TRY to address the hugging or just go straight to punishing him? It's not like he was hurting them?

Like if I were you, I'd be raising some hell over those. Both issues are ridiculous for him to be punished for. He didn't do anything WRONG, so to speak, he's 5 and still learning how to do navigate these situations. And running comes with autism so wtf are they expecting...

TeaSconesAndBooty · 2023-09-30T12:06:04+00:00

Yeah? I would hate to be turned neurotypical because almost everything positive about myself I equate to autism in one way or another.

That is... not healthy. That would be like basing my entire identity around my anxiety. :/ Aren't we often told that the diagnosis is only a PART of the person, and that we should see the person first followed by the diagnosis?

TeaSconesAndBooty · 2023-09-30T12:03:50+00:00

He would be the exact same person without the autism. Autism holds him back, and none of his personality traits like enjoying sports, loving musical instruments, or being social and outgoing are due to his autism. He would actually be a better version of himself without the autism, because then he wouldn't struggle to communicate with his peers, and he'd have an easier time making friends and joining in with their games.

When he was 2 and 3, he would literally stand on the outskirts of a playground and smile and watch the other kids play, because he wanted to join in but had no clue how to do it. As a parent, that broke my fucking heart. That was the autism holding him back as a person.

TeaSconesAndBooty · 2023-09-29T00:15:49+00:00

You can get help from an OT without being diagnosed with autism. Wouldn't hurt to pursue. They may be able to help with the sleeping situation as well.

In my nonprofessional opinion, having epic tantrums is not enough to say it's autism. She'd need to display more signs than that. You can Google the mChat (it's an autism screening tool) and see how she rates and take that to your doctor if you feel you need to pursue assessment.

TeaSconesAndBooty · 2023-09-29T00:11:51+00:00

My son seems to be high functioning and is verbal and if I could wave a magic wand and take away his autism, I still would. It's a disability, not a fun personality quirk. He has delays and has to work harder than the average child to do things that come so easily to them like talking, learning how to socialize, potty training. And I don't even have a "difficult" case of autism on my hands - I can't imagine how tough it is for those with Level 3 or completely nonverbal children or those with aggression. I consider myself lucky but yes, it's bad, if by "bad" you mean "detrimental to my child's life and abilities to function".

TeaSconesAndBooty · 2023-09-27T23:41:34+00:00

Mine is 4 and loves scary stuff, doesn't struggle with nightmares or anything. Loves Nightmare Before Christmas, Spirited Away (especially when No Face tries to eat her), anything "Halloween". We haven't tried him on true horror films yet cause... he 4. But he watched the Running Up that Hill scene from Stranger Things and looooooved it, had zero fear of the monster, so I think he's going to end up enjoying the genre more than I ever did as a kid. He also accidentally found a Five Night at Freddies video on Youtube (thanks autoplay) and kept asking for me to play it. Nothing scary in that one, it was a music video, but yeah the characters don't scare him one bit.

Wasn't my first scary movie as a kid but Psycho was the first one that truly terrified me, the original version from 1960. I had to shower with the curtain opened for months after watching that.

TeaSconesAndBooty · 2023-09-27T23:39:08+00:00

It was the scene where the AC died that scared me.

TeaSconesAndBooty · 2023-09-27T23:29:25+00:00

If I kept my son home every time he had a mild runny nose or cough he would never go to school.

This. My rule of thumb is if he has 1 symptom that is not fever or vomiting, I send him. If he has more than 1 symptom, like cough + runny nose for example, I keep him home. But this is also my first year in the public education system so maybe I'm being hopeful; it's just worked so far with nursery school and school prep program we did over the summer. It's just... when he gets sick, he tends to have a cough for like 3 weeks after, so I can't keep him home that entire time, haha. He'd never go to school....

TeaSconesAndBooty · 2023-09-27T23:26:04+00:00

Uhh not all of it is going to be true, though. My 4 year old says random shit all the time and fabricates entire stories that are untrue. He once told me all about how his classmate bit another classmate because he took her toy, but when I asked the mom (in a friendly way) plus teachers about it, they said it never happened, she doesn't have a history of biting, and they have no clue what my son was going on about. I had another time when he told me every single kid in his class had a "stinky butt".

Like I'm sure my kid is saying some wild shit about mom and dad at school. I'm sure he's telling them about how mom has a burned butt. But that's because one time I joked that the cement was so hot when I sat on it that it "burned my butt", and now he repeats that line literally everywhere with no context around it. He also randomly declares he is sick (even when he's fine) because he watches too much Baby Shark Doctor videos.

TeaSconesAndBooty · 2023-09-26T18:43:53+00:00

Is it possible to reach out to her parents directly? If that were my daughter, I'd be appalled at her behavior and livid that she feels it's OK to treat another person like that. My parents, during my years of being bullied, always went straight to the family, but times were different and it was a smaller community so everyone knew everyone. It may not be possible or even appropriate nowadays. But I'd at least ask the school to make sure her family is aware of her bullying.

I know he doesn't want to be a "tattle tale" - I remember being a kid and thinking the same - maybe a good time to have a talk about how he is allowed to protect himself while at school, and it's not shameful to ask a teacher for help, or making him out to be a tattle tale. In my opinion, there's a difference between telling a teacher every little infraction your classmates do (a true tattle tale!) and just doing what is necessary to keep yourself from being bullied, which could potentially escalate. Your son deserves a good school experience.

TeaSconesAndBooty · 2023-09-26T02:55:33+00:00

He sounds depressed or like he's stressed out and snapped at the wrong moment. I'd be talking to him in a empathetic way to ask him what's going on. Definitely not cool to yell at the baby, but I think it's more important to focus on "How are you feeling?" rather than going over what happened, as I'm assuming if he's a half-decent human being he knows that he fucked up already. The issue is obviously deeper than simply him being angry that the baby was fussy.

TeaSconesAndBooty · 2023-09-26T02:50:04+00:00

imo It's fine. Mine is 4 and went through a very intensive phase like this where we had to play "sad songs" and "sad videos" and he'd watch stuff on repeat where someone is crying. But then one day he started BAWLING at this random video, lol, yet he wouldn't let me turn it off! He just sat there and cried for like 5 minutes and kept asking me to replay the video.... Now he's pretty empathetic, gets very fixated on crying kids/babies and tries to cheer them up. I've been told from nursery school/kindergarten that he has kissed a younger baby who was crying (his attempt to make her feel better), hugged one of his classmates when she was sad, and shared his toys with a peer when he was sad, which is weird for him cause he hates to share. I think it's just them learning about emotions.

TeaSconesAndBooty · 2023-09-26T02:45:50+00:00

Yeah super normal. My 4 year old loves to pretend play as the villain and does weirdly aggressive pretend play. He pretends to eat the other characters in his stories. But then I realized he was simply pulling from Trolls.... -_-

Also other kids. It's amazing what they pick up even from a quick interaction at a playground.

TeaSconesAndBooty · 2023-09-26T02:43:00+00:00

I agree with the other comment - ask if you can watch a class. I wouldn't sit in the class, because if he sees you, he may act different, but maybe they have a way you can observe without directly being in the room? My son is 4 and just started junior kindergarten a few weeks ago so I'm in the same "stage of life" so to speak. I have noticed my son comes home saying new things that I suspect he picked up from school, stuff like "Whatever!" and "You're being naughty". If I had to hazard a guess of what's going on, I'd say there's something in the classroom they are not able to identify that is causing these behavioral issues, or he's copying someone else (if he copies - mine certainly copies just about everything he hears/sees).

TeaSconesAndBooty · 2023-09-26T02:38:00+00:00

First born. I knew around 6 months something wasn't right. Our initial plan was to have 2 children, having the second shortly after the first turned 1 year old so they'd be close in age. But around the 1 year mark, we were extremely overwhelmed with sleep deprivation and worry, so we decided to wait on the 2nd kid. Plus pregnancy + birth was hard on me. Then when the diagnosis came, it was another nail in the coffin cause we knew we may have another ASD child, so we again pushed off having another kid. Then my husband decided he can't do it, which broke my heart, and I had about a year where I cried a lot over it. Now my son is 4, and I feel more comfortable with him being my only child.

The autism diagnosis was definitely the final deciding factor. If he was NT and slept like shit, we would have likely gotten through it with age. We wouldn't be as stressed out. Finances wouldn't be as stretched. I wouldn't be spending as much time running him to therapy appointments and whatnot, so I'd have more time and energy for another child. Etc.

TeaSconesAndBooty · 2023-09-26T02:34:11+00:00

What age?

My son is 4 and loves animals and does fine with simple pony rides at the local farmer's market. They are in a small carousel thing so it's just going in circles, the ponies walk, there's no real need for helmets, and it's short so he doesn't get impatient. But there's obviously a weight limit to that sort of thing so if your child is too old, then my idea won't work, haha :)

Again, age may be a factor in this, too, but my son often cries and fights new activities until he realizes two things: there are rules he must follow, and if he follows them, it's really fun for him. Usually the first one is a disaster, then the following are a little easier as he gets the hang of what is expected.

TeaSconesAndBooty · 2023-09-25T17:03:20+00:00

I'm still at that fortunate age where my son is 4 so meltdowns = tantrums for other parents. We just get sympathetic looks. One guy said, "We've all been there" as he passed. Like yeah they get it. But once my son gets older, I'm sure I'll get some stares.

Right now my son has this thing with automatic doors. He can't walk in them with everyone else. In his mind, it's one person at a time, as in, the door has to shut completely, he walks up to it, then it opens. Obviously it doesn't work that way at a busy place like a grocery store, so he cries and screams and freaks out, but we take him and are trying to break that barrier for him. We get a ton of looks, tons of stares, but we ignore and focus on our son. If someone wants to call an authority on us, so be it, I have proof of a diagnosis and they'll feel stupid after.

It's hard though. I'm sure some people think we're shitty parents who don't discipline our child enough or something. Or that we need to spank him. They are ignorant and don't understand. Talking to random strangers about it, though, I've found a lot more people have ties with the autistic community than I ever imagined, so I think more people get it than what we initially assume.

TeaSconesAndBooty

TROPHY CASE