Question from a mom of autistic kid

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I'm diagnosed NVLD, I wasn't diagnosed until late, almost 18 years old. I think the main reason behind such a late diagnosis was that I was in private school. Like some of the signs of my NVLD that'd have been blatantly "hey we're gonna talk to your parents" in public school were just sorta ignored/liked in private school. If you don't know, NVLD is a gap in verbal/performance IQ. My verbal IQ is like 130+, but my nonverbal performance IQ is like 80, so this affects things AS affects like body language, social skills, etc, but also even visual or spacial estimation problems. Math, etc, becomes a problem.

Anyway, for things I wish my parents did, if I had to pick one main one... Homeschool. I hated school as a kid, so much I'd just skip and have to go to court for truancy. I had to go to court for truancy in 5th, 6th, 8th, and 9th grade. Part of it was like, early on, I got overwhelmed at my uncle living with us, and us having to move, and I just shutdown, in 5th and 6th grade. At the time, they were saying it's "depression" but it was more I just couldn't handle what was going on around me. I asked for homeschool, and my mom I guess tried to find some options, but overall, nobody listened to me and my grievances against school. So, my main point is, if your son expresses grievances against the school, and really hates going, then please do pull him out and either put him at a different school (preferably private) or homeschool him. Insanity is doing the same thing twice and expecting a different result.

Yes, I mean, obviously you have to have him be out of his comfort zone sometimes and the like, but just because it'll make him a stronger person in the end magically, or learn something from it, doesn't make it a good idea to have him go through bad circumstances. Yeah, school I guess did teach me stuff, make me stronger, but overall, I don't think it was worth the "cost" I paid. You have to evaluate it from that manner, I mean for me school was one of those big things, but like, basically, are things worth the "cost" he'll pay? For me, the "costs" were quite disastrous and terrible.

I guess if I had to pick one thing, it'd be that. I mean I guess God's made my life sorta "work out" now, more or less, but things I think mainly stemming from school, it's been hard. I felt like I saw the writing on the wall in 8th grade, but nobody cared what I said. To an extent, I'm to blame in my own problems, too, for example, in 8th grade, they were picking people for tech schools, and I simply was too lazy to write an essay. Looking back, that one action of me not writing the essay could have changed my life for the positive. But yeah, that's the main thing.

For random little tips, DON'T have anyone else move into your house, it's always thrown me way off, and even now as a 20 year old, I'm getting extremely thrown off by moving to a new house, and having my sister's friend live with us. I'm I guess "routine" driven, but at the same time, of my own accord, I try lots of new things, so they in some ways offset eachother.

Don't get divorced if you can, it's a big "routine" wrecker for sure.

For his diet, make sure it's top notch. Most people with NVLD really start seeing problems in middle school, and for me, I believe it was compounded by my diet. What happened was, my dad was like, everything organic, almost to the point of OCD about it, but all my food was usually organic/healthy food, and most meals were actual meals cooked basically from scratch. That, and my dad always bought vitamins/supplements for me, even as a kid, so that probably helped my mental functioning without knowing it. And in general, I could "keep up" pretty well with what was going on around me. But after the divorce, my mother didn't know how to cook much at all, so she just bought us TV dinners and Hot Pockets, and TV dinners, hot pockets, and frozen pizzas became the entirety of my diet.

At that time, too, I started withdrawing from athletics, partially because I think that type of food really wrecked my performance, but partially due to team sports in general not working. What sucked is, the 2 sports I really liked as a kid, I couldn't pursue, hockey and judo. My parents ran out of money just as I got through the beginning levels of both. I'd say, make sure your kid does SOMETHING athletic. He probably won't be cut out much for team sports, so I wouldn't stress him there, but individual sports could be great for him. Like, now at 20, trying to repair my life, I've taken up figure skating and love it, so in some ways it worked out better than if I played hockey as a kid. At the same time, with individual sports, it's pretty much experienced based for who wins. If he finds an individual sport he likes, he could get really good. For me, for sports I liked, I'd practice ALL the time as a kid, just by myself, trying to get better. So if he turns out the same way, you could potentially have a great athlete on your hands. He might not be captain of the football team, but if he takes the sport well, he could be a good gymnast, fencer, martial artist, weight lifter, etc, you never really know. And plus, football captains don't go to the Olympics. But, when the time comes, try to have him explore some individual sports. Individual sports won't stress him out quite as much. I mean if he wants to try a team sport, by all means, let him, but most parents have their kids do team sports by default, so I'm just saying try him through individual sports first. Individual sports, too, especially "girly" sports guys do, like gymnastics, figure skating, etc, are full of shyer/introverted/weird guys anyway, so he'll probably "fit in" much better there.

Last thing, too, try not to shame him out of special interests. As a kid, I loved sci-fi, especially Star Trek, Lost in Space, etc. My dad really tried to shame me out of them, partially by directly calling them stupid, but also by trying to get me more into "normal" things like sports. The sports thing was OK, I liked sports (and did really Aspie obsession things with sports, like I'd practice throwing a baseball for like 2 hours at a time against a wall by myself) but I felt a lot of shame about like being a "nerd." My dad I guess was old fashioned, and I understand why he did it, and there was nothing like, malevolent in what he did, but to constantly feel shame about the way you are, you know? So in some ways, under my mom's "reign" it was better, as she didn't care how nerdy I was, but it makes you develop...weird. The other thing, too, though you might have a tendency to call his special interests "phases" really, you should help him the best you can to pursue them and make something useful out of them. This costs money, and you know, this is where being a parent comes in, you can't just throw money at everything he likes, but I wish my parents really would have let me seriously pursue any of my special interests as a child, I feel I could have been a blackbelt, working for NASA, just...really good, at something. As much as people talk of "well rounded" ness, well rounded people usually don't do great awesome things. I mean you want it to a point, but really, the only way for Aspie people to do well is if they're allowed to pursue a special interest and get really good at it to the point where they're a professional/specialist at it.

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Sorry for the longwinded post. To sum it up, if he's having trouble at school, listen to him, and do something about it, don't just leave him there, it's not going to automatically get better. Whether it's as simple as negotiating with the school, or as hard as homeschooling, please do listen to him when he expresses problems at school. You might think he's exaggerating things, but at least for me, I didn't even tell them like half of what was going on. Just read any of the articles in here of abuse by special ed class teachers. Schools are nasty nowadays. Other thing, try not to really mess up his "routine" by moving a lot, having random people live with you, etc. Sometimes it's unavoidable, but don't put your son's livelihood in jeopardy for your random uncle who needs to stay with you for 2 weeks then stays 6 months. Nutrition and athletics, very very important to the wellbeing of your son, make sure his nutritition stays topnotch. Things like nutrition, hours of sleep needed, etc, are much more important for "different" people. Lastly, for special interests, try not to shame him out of any, and help him in the ones you can, to see if anything can be made of out of them.

Good luck, and thanks for asking for input. You don't want your son coming on this board in 20 years and complaining how terrible his life is, you know?

Please try to grasp the difference between the concept of 'thinking' a concious deliberate act and 'processing information' an unconscious act.

I was diagnosed with ADD in 5th grade and will soon be tested for aspergers probably, even thought my mom is convinced I have it anyway.

I wish my mom had made more schedules for me and made sure I went by them. Now I would have fought against that, but think it still would have worked out for the best. I wish I had not taken any medications, I now refuse to, despise medication.

My mom still asks me why I say I don't know when she asks me why I reacted a certain way to something. I don't want to say/not really sure why so I am not going to answer.

If you are bent on trying to talk to your son in this way I am more okay with communicating through texting. That is how I talk to some of my friends when I am pissed off, but I can't imagine doing that in person or on the phone.

Would have liked if she had helped make sure I participate in clubs or something, did not do that very much.

Since 8th grade I have had crappy grades, usually don't do homework, have had some struggles with school since 2nd. Mainly writing, could not write on my own until 6th grade, even though I read the Hobbit in 3rd grade.

might put an edit later of more stuff.

I'm not on the spectrum, but another mom - I'm going to ask my 16yo what he would say - your description sounds a lot like him at that age. My guess is that the big thing is dealing with the bullying. But FWIW, reading comprehension was never a big deal, but he did (and still does) have a preference for non-fiction over fiction, which I think is probably somewhat AS-related.

Sounds similar to me. I'm not officially dx'd yet, but I'm definitely on the spectrum.
Anyway, I started talking early & well. But stopped cold when my sister was born. I resumed speaking about a year & half afterward. Developed speaking & reading pretty much on schedule, maybe even ahead. But my reading skills took off like a rocket in elementary school, especially regarding my special intrest(s) ( I had a couple, but dinosaurs were my first love. ). By 2nd grade I was reading at 6th grade level, but had speech problems, was akward, etc. Pretty much the classic Asperger's/HFA kid.
Advice? Beware of bullying! That will be your biggest challenge. It doesn't build character & we do not know how to "just deal with it & be a man" like I got told. Very harmful, I wish I had a private tutor to home school me, but in the 1960s? Good luck with that.

Sincerely,
Matthew

Not allow teachers and students traumatize me year after year.

That would have been nice. My parents tried really hard to protect me from those things, but when I was in school you had to toughen up and take it. At least that is what everyone at the school told my parents whenever they complained. I still do not want to go into depth about it (I am 35 now).

Reading was never a problem for me. I took to it like a moth to a lightbulb and to this day, it's one of my favourite things to do. I couldn't read before school started, but that's mainly due to nobody teaching me and my biological mother constantly dumping me in a playpen and doing everything but interacting with me.

Apparently I started to speak a little bit later than the average child. I was a very quiet baby. This was an issue in school. I had a very quiet voice (still do) and people simply didn't listen to me because of it. I was often teased about it, by both teachers and other students. And there were lots of time when I just didn't see the point in speaking, so I didn't. I never joined in songs or group discussions. I hated them. Because of all the ridicule from other people, I withdrew a lot more and this didn't help me learn any social skills or anything like that.

I'm only self-diagnosed at the moment, but this is what I would reccomend.

1 - Don't force socialization on your child, if they don't want it. In addition to having Aspergers Syndrome, I am an introvert and as a child I was very socially anxious. My biological mother was always dragging me about, all over the place, to visit random people and forcing me to interact with anybody and everybody and it was mentally exhausting, irritating and didn't help me in the slightest. I was forced into seeing counsellors from an early age by the schools I went to and I was always being forced to do "peer support" programs, where they'd grab a few kids and try to make us all friends via discussion and games and things. I never made any friends out of them, but as soon as one finished, I had to start the next one.

2 - Don't hassle your child about friends and going out. My biological father is constantly doing this. He's always asking me stuff like "Why don't you give _____ a call and arrange to go out?". After school every day he would interrogate me with questions like "Who did you have lunch with? Who did you sit next to in your classes? Who did you talk to today? Did you make any new friends today? Who are your best friends in class? What games did you play with the other kids today?" and so on. And if I didn't tell him what he wanted to hear, he would lecture me for at least two hours about how I "need friends" and that "I'm going to die alone, if I carry on like this". I learned quickly to pretend I had lots of friends at school, just to shut him up.

You can bet that when I start university (in March, this year), he'll start carrying on like this again. I'm not saying that you shouldn't moniter your child's social interactions, but please don't hassle him like my biological father hassles me. It doesn't achieve anything except resentment on the child's part. Be more supportive of your child's natural inclinations and encourage him gently to socialize, but don't force it on him.

3 - I don't have very many meltdowns but when I do they generally last for at least an hour. I don't act out destructively very much - the most I'll do is punch a pillow or throw it. I mainly just cry and scream. But I would get over my meltdowns much more quickly and I would deal with them much better if only my biological father (I live with him) would just leave me alone during the time they occur. Whenever I have one, he's always in my face, telling me to calm down, trying to tell me that what I'm upset over is just a joke or it's nothing and telling me how weird I am for having it. He doesn't listen to me when I tell him to leave me alone and if I walk away, he just follows me. I have to say something mean to him, to get him just to leave me alone. And that causes tension between us and stresses me out more. My meltdowns wouldn't be nearly as bad if only he'd deal with them the way I want him to.

Of course if your child's meltdowns (if he ever has them) are worse than mine, you probably should interfere with them. Ask him what he needs from you when he has a meltdown.

4 - Don't say negative things about your child's obsessions or interests. Any strong interests I have, my biological father tries to discourage, because I "need to broaden my horizens" and "not be so one-eyed". All that does is stop me from telling him about any interests I have, which then results in him complaining I "never tell him anything about my life" and that I "don't include him as much as I should". Which is just a vicious cycle and doesn't do anyone any good.

5 - Your child might not be as affectionate as you'd like or expect him to be and he may be a bit more mature and independent then you'd expect or like him to be. But you really need to respect the way he is, if he turns out to be like that. It's hard for me to explain, but I believe that part of the reason my relationship with both of my biological parents is so bad (I'm estranged from my biological mother and I feel that if my biological father does not improve his ways, I will be estranged from him as well one day. I only live with him and interact with him because I don't have the financial resources to live by myself yet.), is that I just wasn't what they were expecting from a parent-child relationship. I was happy to be by myself and do things for myself their involvement in so many aspects of my life was just plain unneeded and unwanted. Neither of them know I have AS, but they both had/have expectations for me, I can't fulfill. I'm fairly sure, that the only reason I was born, is so that they could experience the so called "unconditional love" a child has for their parent. They're both very clingy people.

6 - As somebody else in this thread said, I am not an auditory learner. I get incredibly bored and zoned out, by listening to someone speak for an excessive length of time. It's pretty much impossible for me to stay awake when someone just goes on and on and doesn't vary their ways of delivering information at all. I am not a visual learner either. Pictures rarely, if ever, help me understand a concept. They often just end up confusing me more. The best way for me to learn is to listen in small amounts, read texts, take my own notes, complete questions on a subject and do repetitive work that hammers the concept home.

These are just the main things that I would say are the most important, judging by my experiences. If I think of any more, I'll post them here later.

If my mom was upset about something and started crying it in a way disgusted me. Which made it so I stopped listening or just did not pay attention to what she said as much. Kind of goes with where I said i am more comfortable communicating emotions through text.

If i could change one thing I would have had my parents tell me that i had AS, and be a little more understanding of my deficiencies than just telling me to change. I don't mean i wish that they had treated me special, but a little more understanding and a lot less denial would have been nice.

Please realize there is no border between autistic and non-autistic in this regard.

Ditto. My mom hid it from me for a long time, and instead of the "autistic" label, I was labeled lazy, rebellious, and spoiled. I grew to hate myself for what I thought I must surely be able to change about myself. Don't let that happen to your kid.

Again, born in the 1960s. Pretty much had the truth hidden from me for about twenty years or so. I don't think my mother will ever admit to it, but she knows..

Sincerely,
Matthew

I disagree with that. I think there is a difference; a perfect example of this is sensory integration problems. Many autistic people have trouble with these because we process incoming stimuli differently, and it causes us stress. Neurotypicals usually do not have issues like these.

First, enough with the sensory issues. People here seem to think it's the heart of Autism. It's not. Sensory issues are actually common with a ton of mental disorders, many of which share many similarities with AS, but are still distinct for whatever reason. Second, I'm not saying there is no difference between NT and autistic, I'm saying there is no border. There is red, there is blue, and then there is purple. It's all a spectrum.

You are telling people they should stay in an unhappy marriage because divorce is a routine wrecker? WTF?

I wish I had gotten diagnosed earlier, I wish my parents would have made that happen instead of resisting it. Its the key to understanding your child, and to get all the help available.

I wish they had been more invested in my education, the fact that I never ever needed help with studying or the fact that my grades were perfect did NOT mean school was easy. Keep an eye out for signs that your child is lonely/being bullied/left out, even if he claims everything is fine. Children never want their parents to worry, and in hindsight i wish hadn't been so good at keeping the problems I was facing from my parents.

Do not make fun of your childs autism. I always pretended, and still do, that Im okay with it since I know they mean well, but actually it hurts.

I wish my parents wouldn't explain every little thing with "oh, but its your autism". Everything I do or think or feel is not an "autistic thing". Im not autism, I have it.