Help understanding my son better

[Parrots]

I am a mother to a really sweet 5 year old son who was diagnosed as having level 1 autism earlier this year. He is verbal, tho needs some help with speaking clearly and is starting speech therapy next month. He's also EXTREMELY intelligent (knew alphabet age 2, started reading and math age 3, knows more than most adults about astronomy and human anatomy) but really struggles with focus, self control and hyperactivity. He's starting homeschooling Sept. 1st because I don't trust the local school district to be able to tailor an educational plan as well as the online curriculum I found for neurodivergent students. He's also good with technology and does tend to focus better when what he's focusing on is on a screen VS real world. We are currently on a 6 month waitlist to get him enrolled in behavioral therapy.

I've been trying to get help for him over 2 years and now face another 6 months of waiting before we can talk to a professional at behavior, so I'm reaching out here for help to better understand him and how to navigate a few key issues in the meantime because he's starting school and has to learn things he's not interested in without running off or tuning it out. ANY ADVICE IS APPRECIATED

The 3 biggest issues we have are:

1. The verbal stimming. All day every day and it just gets so overwhelming/overstimulating/triggering for me, my partner, the pets and literally everyone who spends time around my son. I don't know how to handle this in a way that's fair to him and also teaches him situations/times that are appropriate. I try telling him if he wants to be vocal to go in his room, but he just pops back out 30 seconds later. I try engaging him in actual conversation, to read a book out loud... anything other than babbling in a high pitched loud voice for hours on end.

2. He cannot sit still. Hes always squirming, rolling around on furniture, sliding out of his chair, rubbing his face on things, touching things despite being told repeatedly not to (like in a store or other peoples homes), running back and forth. Unless he's in front of a screen, he will not sit still. He has to learn some level of self control in this area and I'm unsure where to start because telling him nicely to sit still doesn't work at all, nor does raising my voice.

3. Selective hearing/doesn't like to listen. He was assesed for language processing dueing his speech assesment and i will get the results when he starts next month. I don't know that he really doesn't understand things, I more think if he's not interested, he just goes off in his own world. If he is interested, he can understand VERY complex concepts. It feels like a lot of day to day conversations with him are me talking and him squirming/spinning around, making noise and not listening because he doesn't care to hear what I have to say.

 

[Outdated]

A lot of what you describe sounds like me as a child.

When asking for suggestions regarding professional help you really need to tell people what country you're in. Services available and what they cost varies greatly from country to country.

He's starting homeschooling Sept. 1st because I don't trust the local school district to be able to tailor an educational plan as well as the online curriculum I found for neurodivergent students.

I wish that had been an option available for me as a kid, instead I used to just not go to school, I'd wait for Mum to leave for work and then go home again. I was always a straight A student but the social environment in school was incredibly traumatic for me. I was out of there almost the same day I turned 16 and never looked back.

We are currently on a 6 month waitlist to get him enrolled in behavioral therapy.

Just the idea of this scares me, it reminds me of all the people in my childhood trying to force me to "be normal". All they achieved was my lifelong resentment of those people, including my parents. I have one of those types of memory.

He cannot sit still. Hes always squirming, rolling around on furniture, sliding out of his chair, rubbing his face on things, touching things despite being told repeatedly not to (like in a store or other peoples homes), running back and forth. Unless he's in front of a screen, he will not sit still. He has to learn some level of self control in this area and I'm unsure where to start because telling him nicely to sit still doesn't work at all, nor does raising my voice.

Childhood hyperactivity is common in autistic children when they're young. This doesn't normally indicate ADHD, childhood hyperactivity is a different thing, they tend to grow out of it before reaching puberty and it is most commonly affected by diet. Do a little reading on the relationship between food colourings and preservatives and hyperactivity.

Selective hearing/doesn't like to listen. He was assesed for language processing dueing his speech assesment and i will get the results when he starts next month. I don't know that he really doesn't understand things, I more think if he's not interested, he just goes off in his own world.

Hyperfocus. If he's focused on something it will be almost impossible to get his attention. He's not ignoring you, he doesn't even know that you're there. You may even get verbal responses from him but these will be subconscious reactions and he probably isn't even aware that he's answering you, you'll notice that his responses are out of context and often don't make a lot of sense.

And back to the home schooling - I'm glad you're able to do this. The mental growth patterns in autistic children are very different to that of normal kids, we start to mature intellectually much earlier and much faster than normal children but our social maturity doesn't even begin until much later. In a normal school yard he will be extremely disadvantaged and victimised for it.

So for a typical autistic kid at 7 years old, they're typically capable of doing high school level study but in terms of social maturity they're only at about the same level as a 4 year old. There's no point in trying to force anything different on them, no kid is capable of understanding concepts before the parts of their brains that can deal with those concepts have finished developing. That is why the idea of behavioural therapy scares me.

Speech therapy is a good idea though, I really benefited from that as a kid.

 

[vergil96]

A lot of what you describe sounds like me as a child.

Me too

As for 1 I have no idea. Maybe point 2 will kills two birds with ome stone. Verbal stimmimg is also a kind of stimming.

2. He cannot sit still.

I can't either. The only solution is to find socially acceptabke ways to seek stimulation. For a child, fidget toys might be appropriate. I have seen somewhere that rubber bands can be attatched to the legs of a chair for the child to pull with legs. For any age, finding acceptable ways to move like playing with hands or bouncing a leg might work.

It might also be helpful to organise some physical activity for him. It is generally helpful for physical hyperactivity and ADHD. Play sports, take him to a judo class, take him outdoors and find activities that would allow running, swimming until he gets tired. My parents sent me to a sports school and took me to a lot of trainings before school. I guess that worked.

It feels like a lot of day to day conversations with him are me talking and him squirming/spinning around, making noise and not listening because he doesn't care to hear what I have to say.

It might not change later as well. For many autistics the key to conversations is our special interests. It is troublesome, because there are everyday activities that require attention, you can't study, say, anatomy all day and all night. I don't know what other than usual parenting methods to suggest - with more patience.

So for a typical autistic kid at 7 years old, they're typically capable of doing high school level study but in terms of social maturity they're only at about the same level as a 4 year old. There's no point in trying to force anything different on them, no kid is capable of understanding concepts before the parts of their brains that can deal with those concepts have finished developing. That is why the idea of behavioural therapy scares me.

Agreed. It took me longer to mature socially as a child too, however, I was decent at socialising around the time I went to school. It just improved on its own, the hyperactivity was getting in the way and it took more repetitions/practice to understand certain things or be able to do them. I was also always more active and externally focused, social skills require you to feel what's on the inside and understand it intellectually. It requires patience. I didn't have any up to the age of 5 or so.

 

[Parrots]

Outdated and virgil96- Thanks for the replies. We live in the United States. My son was diagnosed at and is receiving services through a regional center. We are on state insurance (medicaid) and can't afford private treatment. We also live in a rural area where all services are very limited.

I was also similar to my son as a child but it was handled with physical discipline and Catholic School for me. I was never diagnosed with anything because my parents never believed in all that. I'm also a girl and I think it came easier for me to pick up on how to act around other people than it does for a boy. I know my son would be bullied merciliessly for how he behaves if I send him to school, especially where we live. It is my hope homeschooling him will allow him to focus on education rather than social issues. Ive signed him up with a school cirriculum that allows kids to work at their own pace and appropriate grade level in each subject individually.

Regarding therapy, be it right or wrong, the world is how it is and hes already being excluded from fun experiences because of his behavior. For example, he really wants to go see a movie in a theater for the first time with his little friend and her family, but he can't sit through a movie without making loud noises and running around, so he can't go. Last weekend when he was visiting his grandma, he was invited by the family across the streey to go to a park with their kid and a few of her friends from school. Everyone but the girl made fun of him because of the verbal stimming. It is a major disservice to him to not try to (gently) teach him discernment regarding how to behave in various situations he may find himself in as he grows up. I'm just so out of my element on how to do that

Looking for socially acceptable alternatives to the verbal stimming and movement issues for when he's in certain situations is kind of what I'm on here for. It's breaking my heart to see the increasing by the day ways these behaviors are starting to impact his emerging social life.

 

[Outdated]

I'm also a girl and I think it came easier for me to pick up on how to act around other people than it does for a boy.

That's also a very salient point, autism presents differently in boys than it does in girls. Girls are generally more socially inclined than boys and on average better at masking their behaviours than boys. This comes back to bite the girls later in life when they get misdiagnosis after misdiagnosis because they're able to successfully and habitually mask a lot of their traits.

I didn't even begin to learn any real social skills until I left school. I was just lucky that in my first job I worked with a lot of people that I truly admired. That made all the difference in the world to me, for the first time in my life I had real role models instead of just being tormented by every one.

For a while social skills became one of my special interests and I was socially very successful after that.

 

[vergil96]

he really wants to go see a movie in a theater for the first time with his little friend and her family, but he can't sit through a movie without making loud noises and running around, so he can't go

The last time I went to the cinema, I had to leave halfway into the film, I said I need to go to the bathroom, I did and then walked back and forth for some time on the corridor and then came back. Apart from being unable to sit still for that long, the level of noise and flashing lights made me feel agitated too. Some activities look attractive from the outside or because all the other people are having so much fun doing them, so they have to be a lot of fun, right? They're not, I lowkey hate cinemas, even though they look like entertainment.

Hm. Maybe something to take into account as well. Being nervous and overstimulation increase stimming, it can be a way to relieve tension, among other functions it serves.

Some time before that time, I went to the cinema with friends and (after increasingly playing with my hands pacing and bouncing legs and finally wringing my scarf to death, which attracted attention) had to leave and vomited in the public bathroom. I got a mild form of photosensitive epilepsy in the package with autism, sometimes it's unclear whether something is a seizure or not. Often children with the same issue appear to cry and have a meltdown - the sensation is very unpleasant, so logically, it will make a child very scared or nervous.

Sometimes I fall asleep in the cinema, on the contrary. I know that sounds very silly.

So cinemas, not my favourite way to spend time, I'd rather avoid them altogether. I watch films at home. I don't go out a whole lot, but when I see a friend we go somewhere more peaceful like a cafe in a less frequented area of the city, go for a walk just us two or with the friend's dog. We play online games and chat online. Play board games.

What is a sensory diet? - Autism Awareness
Some ideas for stimming

 

[Parrots]

I should also note, my son seems to WANT to be social and is not shy or withdrawn at all. He just lacks the necessary skills and is not picking up on them intuitively like other kids. I also think being able to talk more clearly will help him a lot. He has a huge vocabulary for a 5 year old but talks like a little drunk person and is very hard to understand.

He does have a small friend group and a lot of cousins he regularly interacts with. Obviously these kids understand he acts a little differently and aren't mean about it, but the more he gets out in the world, the more hes going to encounter kids who are total jerks. I can very much see him not wanting to be social anymore after a few more years of bad experiences due to not knowing when and how to dial back some of that uncontrolled energy.

That's what happened to me as a kid. I really wanted lots of friends, got bullied for being wierd instead and to this day, I don't care about socializing and prefer to do my own thing. I could have a much bigger social circle as most people I meet seem to like me and my art and my parrots (I find birds much better companions than most people). My partner is my polar opposite and can start a conversation with and make friends with literally anyone. I would love to see my son to be more like him than me and not have all kinds of weird trust issues and hang ups about meeting new people.

 

[Outdated]

That's what happened to me as a kid. I really wanted lots of friends, got bullied for being wierd instead and to this day, I don't care about socializing and prefer to do my own thing.

This was also me as a kid, you see other kids having fun and want some of the same for yourself. Unfortunately as a child almost every social interaction ended in trauma. As a child my only real friend was a girl, she wasn't loud or boisterous.

For normal kids the bullying of someone that's different becomes habitual, so once they start bullying a kid it won't stop, not even in adulthood. Walking away from those people and putting all of that behind me was the beginning of me being able to learn social rules and protocols.

As a child I got along pretty well with adults in general, and with kids much younger than me, but I was unable to meet the expectations of kids around my own age.

It sounds like you never really learned to socialise well as an adult either, or perhaps that's just a part of your nature. Although I had a rough start in life I actually really enjoy talking to people and I'm one of those people that starts up conversations with random people I meet when I'm out. I think a big part of that is to do with early learning, here's an excerpt from another post I made somewhere in here:

The other part is in the way I grew up, vastly different to how people live today. This isn't a cultural difference, it's a generational difference. Read through this forum and you'll notice a quite distinct generational divide. In those of us now over 45 social anxiety is not common, for those of us currently under the age of 30 that social anxiety is almost universal.

I blame the way kids spend most of their lives in either school or day care centres where their only social learning comes from other kids instead of responsible adults. In the school yard the bully rules and if you're exposed to that and nothing else during your formative years then damage is done that will follow you for the rest of your lives.

We didn't have day care centres when I was a kid. We walked ourselves to and from school and we went home to an empty house because both parents worked. We were also given a lot more responsibility at a much earlier age than most kids today. At 5 years old we'd come home from school and find a note on the table with some money telling us to go to the shop and buy milk, things like that. So two massive differences there:

We weren't trapped within a nasty social hierarchy (school bullies) for the majority of our lives.

We got to speak to normal adults outside of our family and without parental supervision and got to see that the social environment we experienced in school was seriously messed up and that the outside world isn't like that.

At age 7 I used to go door to door selling lemons for pocket money, we had a tree in the back yard. I learnt how to socialise and how to talk to people from a very early age.

 

[Neonatal RRT]

I am a mother to a really sweet 5 year old son who was diagnosed as having level 1 autism earlier this year. He is verbal, tho needs some help with speaking clearly and is starting speech therapy next month. He's also EXTREMELY intelligent (knew alphabet age 2, started reading and math age 3, knows more than most adults about astronomy and human anatomy) but really struggles with focus, self control and hyperactivity. He's starting homeschooling Sept. 1st because I don't trust the local school district to be able to tailor an educational plan as well as the online curriculum I found for neurodivergent students. He's also good with technology and does tend to focus better when what he's focusing on is on a screen VS real world. We are currently on a 6 month waitlist to get him enrolled in behavioral therapy.

Just a word of caution with ABA...make sure this is a positive experience in the sense that it teaches him social norms and how to manage himself...BUT the last thing you want is to have all of this be internalized as "something is wrong with me". It's not WHAT you do, but rather HOW you do.

I've been trying to get help for him over 2 years and now face another 6 months of waiting before we can talk to a professional at behavior, so I'm reaching out here for help to better understand him and how to navigate a few key issues in the meantime because he's starting school and has to learn things he's not interested in without running off or tuning it out. ANY ADVICE IS APPRECIATED

The 3 biggest issues we have are:

1. The verbal stimming. All day every day and it just gets so overwhelming/overstimulating/triggering for me, my partner, the pets and literally everyone who spends time around my son. I don't know how to handle this in a way that's fair to him and also teaches him situations/times that are appropriate. I try telling him if he wants to be vocal to go in his room, but he just pops back out 30 seconds later. I try engaging him in actual conversation, to read a book out loud... anything other than babbling in a high-pitched loud voice for hours on end.

Everyone manifests their stimming in different ways. I am not sure that one can substitute one type of stimming for another at this age. The good news in your case is that he is intelligent and will likely learn, over time, to mask his autistic stimming or substitute verbal with something else. That said, some people are life-long verbal stimmers.

2. He cannot sit still. Hes always squirming, rolling around on furniture, sliding out of his chair, rubbing his face on things, touching things despite being told repeatedly not to (like in a store or other peoples homes), running back and forth. Unless he's in front of a screen, he will not sit still. He has to learn some level of self control in this area and I'm unsure where to start because telling him nicely to sit still doesn't work at all, nor does raising my voice.

Part of being a 5-year old boy. Boys, in general, need a LOT of physical activity. Throw in a dose of autism and ADHD (a common co-morbidity)...and yes, there will be a lot of activity. Anecdotally, I found that my mind worked best when I was on my feet and pacing....I made flash cards and walked around the house when I was studying in school. Sit me down at a desk or kitchen table and my mind wandered off and I could never focus.

You've already found out that commanding him doesn't work. Give him a choice of two things. Boys in general, you aren't going to reason with.

3. Selective hearing/doesn't like to listen. He was assesed for language processing dueing his speech assesment and i will get the results when he starts next month. I don't know that he really doesn't understand things, I more think if he's not interested, he just goes off in his own world. If he is interested, he can understand VERY complex concepts. It feels like a lot of day to day conversations with him are me talking and him squirming/spinning around, making noise and not listening because he doesn't care to hear what I have to say.

Selective hearing. A common thing with boys...still do it myself. Every wife since the dawn of time has complained about this. You literally have to make me stop what I am doing, look me in the eye, then talk to me. Autism in general is often associated with difficulties transitioning from one thing to the next...and it manifests itself in all manner of obvious and not-so-obvious ways. I would NOT interpret this behavior as "doesn't care to hear what I have to say". He may be focused upon something else and literally NOT able to break the focus. I get quite irritated with phones and text messages, people walking up to me and talking to me when I am focused upon something else. He's 5, but I am suggesting that even when he is 65 it might be a little better, but not much.

Then, there is something called "demand avoidance"...if he is doing something his way and you try to correct him...he may frustratingly and angrily stop doing it altogether. It might be "I was going to do it on my own, but since you told me to do it...I won't." Seems like being a disrespectful, stubborn, jerk...but know that is not the intent. Better to praise first, encourage, then later...show him how you might do it, but avoid interrupting. My parents rarely, if ever, told me "NO". They stood by...or not...(skillful neglect)...let me do it, make mistakes, try and try again...and I either figured it out on my own...or I would ask for help IF I was open to it...I almost never asked for help. It must have been frustrating to watch me as a child...and I think they just gave up watching for their own mental health. Still don't ask for help.

Furthermore, do consider HOW you are communicating. Autistic folks are notorious for their very direct communication...which neurotypicals may consider rude. Autistic folks are also notorious for needing details...all the who, what, where, and why...part of that underlying anxiety condition...part of the "mind-blindness"...many of us cannot infer how another feels internally, predict another's behavior, nor grasp intent, nor hints. Do not begin a command with a question...just go directly to the command and be very specific. You can't "dance around" a topic or request and expect us to understand any of that "polite" neurotypical banter. If we do...great...but don't expect it. Mac OS vs Microsoft software. Example: 4 people, 3 neurotypicals, 1 autistic. Neurotypical speaking to the autistic, "We are going to get some lunch now." Autistic, "OK" then goes back to what he was doing. A simple interaction, but the neurotypical was inviting the autistic to lunch and the autistic person didn't understand that. What should have been said, "Would you like to go to lunch with us?" and of course, the autistic person will likely respond with the "who, what, when, where, and why"...then he will decide if he wants to be part of the lunch party.

 

[Crossbreed]

Hello & welcome @Parrots!

See Finding Support Resources in the USA...

 

[vergil96]

I also think being able to talk more clearly will help him a lot. He has a huge vocabulary for a 5 year old but talks like a little drunk person and is very hard to understand.

Then speech therapy is a good idea

I should also note, my son seems to WANT to be social and is not shy or withdrawn at all.

Nobody truly wants to be all alone

He does have a small friend group and a lot of cousins he regularly interacts with. Obviously these kids understand he acts a little differently and aren't mean about it, but the more he gets out in the world, the more hes going to encounter kids who are total jerks. I can very much see him not wanting to be social anymore after a few more years of bad experiences due to not knowing when and how to dial back some of that uncontrolled energy.

It makes total sense what you're getting at. I completely get what you mean, it is much needed to coexist with other people on some basic level

I'm just so out of my element on how to do that

You will figure it out, don't give up

That's what happened to me as a kid. I really wanted lots of friends, got bullied for being wierd instead and to this day, I don't care about socializing and prefer to do my own thing. I could have a much bigger social circle as most people I meet seem to like me and my art and my parrots

I had a bit of an opposite journey, when I was very young, I didn't care much for people. I had hearing loss and interacting was no fun. It would have been more fun if the other children weren't so self-absorbed from my point of view and actually talked to me in a way that I would be able to keep up with. It got easier as I got older

 

[PastelPetals]

hello! I read your post as well as some of your replies. I know medicaid does not allow for many options so when he does get access to therapy try to be in contact with his BCBA and emphasize that you want assent based treatment and you are looking to replace behaviors not extinguish them.

my bad experiences with behavioral treatment were the times they were just telling me to stop what I was doing in exchange for a reward. all the energy remained with nowhere to channel it but once I was working with people who just wanted to replace every behavior I did a lot better. for example I look back on the year the I had to practice a lot of "calm body" but once I was taught about some more subtle stims I could do while still being focused + ways to get breaks to move more if I needed, I did a lot better.

I was a verbal stimmer as well. I didn't babble but I hummed as well as making a sort of hum in my chest that sounds a bit like chewbacca. I learned to keep that for when I was alone/ in emergency situations when I needed it to avoid meltdown. sadly I learned to stop due to shaming from others and I wish I could have been taught how to redirect the energy like I was able to for other stims.