this post was submitted on 22 Aug 2024
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Autism

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I'm the father of a 6 year old boy diagnosed with autism when he was 4. He's considered non verbal although he has some stock phrases and sounds he uses daily.

The thing is I'm worried if I've made the right decisions and I'm worried about his future.

Will he ever talk more? Will he do well in mainstream school? Will he be OK?

I'd be interested in hearing your experiences especially if you started as non verbal.

Did it get easier for you? When did you start talking more?

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[–] Max_P@lemmy.max-p.me 35 points 3 months ago (2 children)

It really depends on the individual. Some go from no -verbal to making a living off YouTube/TikTok, some never really speak a lot.

Thankfully verbal communication isn't the only way to communicate. 6 is a bit early for that but, if your child ends up preferring to talk over chat or emails, try to roll with it, that could be the key to having meaningful conversations with him.

Personally, I can talk just fine but I'd rather not. Coming up with responses in real time and listening in real time is demanding for me, because I also have ADHD and my mind wanders around a lot. But if you give me a bit of time I'll probably write you a detailed, thought out answer like I'm doing right now. I can't handle small talk but surprisingly my numerous work meetings go well because I know all the answers, I'm an expert in my field and the goto for tough questions at work.

The main thing to keep in mind is that being non-verbal in no way means he's dumb. He can turn out to be very smart but kind of "locked in" unable to talk about it much but will write a solid PhD thesis like it's easy. It can be very weird how things play out, and too often people assume intelligence is a singular thing. Verbal intelligence and abstract intelligence and mathematical intelligence aren't the same, and autistic people tend to score low in some areas and very high in others, although not universal obviously.

Just focus on being a great dad and not force him into being neurotypical. We call it "masking", which is consciously doing all the little things people do unconsciously and it's exhausting. If he's being weird at home, it doesn't hurt anybody. Don't force answers or any task for that matter. We can be sensitive, and forcing things to happen at specific times is just stressful and can result in a shutdown or tantrum while you could have just given me an hour or two to mentally prepare and do the thing.

I see things like "my child refuses to go outside but we found him happily playing in the yard today, what's going on?" and the answer to that is, he did on his own will, that's the difference. He had the bandwidth and will to experience a bit of outside at this particular moment.

[–] klemptor@startrek.website 13 points 3 months ago (1 children)

Wow... as someone who is not neurospicy but is interested in those who are, this comment gave me a lot of insight into how your brain ticks. Thank you!

[–] carbon_based@sh.itjust.works 2 points 2 months ago

neurospicy i like this word! 😀

(and i somehow do not dislike it that it takes me ages to choose a fitting emoji ... every 🤔 single 🙄 time 😅)

[–] MrNesser@lemmy.world 9 points 3 months ago

Thank you for a really thought out response, we are trying to avoid masking but know some aspects are inevitable.

[–] v4ld1z@lemmy.zip 19 points 3 months ago* (last edited 3 months ago) (1 children)

Take this advice with a grain of salt, but consider going to an SLT. Practically anything to do with late language acquisition is worthy of being looked at by an SLT. If the therapist is specially trained or schooled in it, it may show results with language acquisition and production. Plus a second opinion, other than from a psychotherapist, could prove helpful with finding strategies to manage your daily lives. Good luck!

[–] MrNesser@lemmy.world 5 points 3 months ago* (last edited 3 months ago)

Thanks I'm going to look up some local SLT, we went through the local health care system at first for SLT which turned out to be a series of PowerPoint slides which honestly doesn't prepare you for anything.

[–] eldavi@lemmy.ml 14 points 3 months ago* (last edited 3 months ago) (2 children)

i was diagnosed recently (i'm middle aged) and i've since learned that people on the spectrum get along better with other people also on the spectrum.

when i learned both of this; it reminded of me of my childhood and how other children who existed on the non-communicative portions of the spectrum gravitated towards me despite me never trying to form a relationship with them. in all of these cases the parents of the child pushed school guardians and took action themselves to keep their children away from me and the only reason i ever heard was that they were afraid that their child was going to be hurt because i could never understand what it was like to live on the spectrum.

if you want your child to have friends and you can see that he gravitates towards another child who seems neuro-typical: encourage it through that child's parents. also: if they're anything like my parents; they would have been insulted at the suggestion that i was on the spectrum and banned me from ever associating with your child, so don't mention that that's the reason why you're doing it.

[–] MrNesser@lemmy.world 5 points 3 months ago (2 children)

I think he wants friends but doesn't know how to make that initial engagement. Some children thankfully gravitate towards him so he is getting some social interaction, school holidays are rhe worst for us as parents tend to avoid us.

[–] eldavi@lemmy.ml 1 points 3 months ago* (last edited 3 months ago)

school holidays are rhe worst for us as parents tend to avoid us.

i regret the way i behaved as a kid when i learned about the stigma attached to befriending the shortbus kids and the memories of doing it to people who are just like me are going to haunt me for the rest of my life; the people who aren't automatically bigoted like this are gods among people.

[–] IanTwenty@lemmy.world 1 points 3 weeks ago

I once heard a recommendation that there's nothing better for neurodivergent people then to spend time with their own. Have a look and see if any places near you do sensory/neurodivergent events. I am thinking of things like cinema screenings and soft play. As awareness seems to be growing in some countries demand is emerging for e.g. low volume cinema screenings, lights turned down, low numbers of attendees etc. Whilst your child might not need all these accommodations there will be other children there who are neurodivergent for them to meet and (hopefully) a higher level of acceptance and understanding amongst all the parents.

If your child has special interests then events focussed on those subjects may attract similar types of children. It's a bit of a cliche/stereotype but communities like boardgames, pokemon, videogames, train enthusiasts etc often have events/rules/customs that provide clear ways to engage with others even non-verbally. For example there are people running Minecraft servers purely for neurodivergent children.

If you're really lucky there may even be parent meet ups or workshops in your area that bring neurodivergent kids together and help them to value their difference. Creating a social life independent of school for your child could be really valuable in their years ahead and for you too, helping them keep a core group of friends even when they transition between schools.

[–] retrolasered@lemmy.zip 1 points 3 months ago

Lol, yes, it can feel like everyone has it sometimes as you just always seem to find each other without trying.

[–] IMongoose@lemmy.world 13 points 3 months ago (1 children)

A public school should legally be required to provide specialists to any student with special needs. They are at least in my state. I would definitely get in touch with your school.

[–] MrNesser@lemmy.world 15 points 3 months ago

He has 1:1 help at school

[–] DebugBear@programming.dev 1 points 2 months ago

My son sounds very similar and is also considered non-verbal. He was diagnosed at 4 and will be 12 soon. It was a struggle for me at times, cause I would get really frustrated when he was melting down and I didn't know why. Then when we went in for an assessment, a developmental pediatrician explained he was cognitively at the level of his age. I started thinking about it and realized how hard it must have been for him. To understand everything and not be able to express what he wants. I realized some of his meltdowns were because he was trying to say one thing, and another word was coming out. Or that no words at all were coming out. At that point I switched my focus from trying to get him to talk to trying to listen better. We find alternate ways to figure out what he's asking for. It's a lot of " can you show me?" or him saying " come with me" he speaks in movie quotes sometimes. Sometimes it means something. Sometimes he just likes saying it. It's ok if the words are wrong. It's ok if all he wants is someone to repeat it. I always want him to know I am listening.

We pulled him from mainstream school and sent him to special needs private schools at age 7. In hindsight, we assumed incorrectly that they would make a greater effort to educate him. Now at 11, my wife homeschools, because we can work on the things he needs and meet him at his level.

My wife and I call what you're talking about "grieving the child we expected". At some point we examined or expectations for what his life was going to be and had to let that go. I am not saying we gave up on him. I am saying we accepted he may live with us for the foreseeable future. I do not say this to scare you because your son is only 6, but his language may change but he may still be considered non verbal into adulthood. At some point you need to process that, otherwise it will eat you up inside.

He will be ok. He will live a fulfilling life. All we can do is prepare him the best we can, and love him for who he is.

Things that we have found that helped were researching, apraxia, echolalia, and gestalt language. They are all things a speech therapist should be able to help with. ABA went a long way for my son and making friends, but he also generally isn't interested in other people.