Page 1 of 3 [ 46 posts ]  Go to page 1, 2, 3  Next

FanBoy11
Hummingbird
Hummingbird

Joined: 17 Apr 2016
Age: 1947
Gender: Male
Posts: 22
Location: Boston

23 Sep 2016, 8:22 am

Hi! We are non autistic parents to a wonderful, loving and intelligent 5.5. year old boy who is autistic. We adore him and we want to do right by him in trying to understand a respectful place where we can join him. We would like to connect with him more and hope that at some point in the future he will be able to tell us more of what he needs.

In the meanwhile, we are really hoping some of the wonderful autistic adults here can shed some light on some of our little man's behaviors and patterns. While he is of the generation no longer formally diagnosed as "aspie", we were told by his devlop pediatrician that he profile is more "aspie". This surprised us because he has a significant language delay but we were told that speech development is part of the "diagnostic" criteria, rather it is the "absence of clinical symptoms before the age of 3" that is used to diagnose Aspergers. Doesn't really matter to us what the "term" is, he can decide that for himself when he is older- we just want to try to understand him as much as we can while he is unable to tell us that.

He has recently developed an unusual physical movement where he will swipe the floor with his foot or back track on his steps. It seems to be a ritual but no pattern that we can discern, nor is he visibly more upset when he does it. It does not look like any of his "happy stims" like looking at things peripherally or verbal stimming. Would any one have any ideas why it happens? I say happens because it appears to be kind of involuntary and can often keep him from doing something else he likes to do :(

It's nice to be here
MZ



kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

23 Sep 2016, 8:52 am

Seems like it's sort of a ritual.

I was classically autistic, then I turned "Aspergian" when I acquired speech at age 5.5.



Jute
Velociraptor
Velociraptor

User avatar

Joined: 11 Sep 2016
Gender: Male
Posts: 400

23 Sep 2016, 9:17 am

I'd opt for it being a ritual too. I did similar things at that age and in fact at times I still do. as well as swiping my feet or putting in small spins I still tend to avoid cracks in pavements or alter my strides so that I deliberately step on small metal covers that are set into the pavement. I don't know why I do these things but I've always done them and if I didn't do them it would play on my mind until I felt compelled to return to the place, where I'd missed one of these rituals, so that I could rectify my omission.


_________________
Gamsediog biptol ap simdeg Bimog, toto absolimoth dep nimtec gwarg. Am in litipol wedi memsodth tobetreg bim nib.

Somewhere completely different:


Autism Social Forum

I am no longer active on this forum, I've quit.


EzraS
Veteran
Veteran

User avatar

Joined: 24 Sep 2013
Gender: Male
Posts: 27,828
Location: Twin Peaks

23 Sep 2016, 1:20 pm

Ritual. Sort of OCD type thing. I have gone through a few of those.



somanyspoons
Veteran
Veteran

Joined: 3 Jun 2016
Age: 48
Gender: Male
Posts: 995

23 Sep 2016, 2:14 pm

It might be a ritual. It also might be part of a game he's playing with himself. I used to pretend that I was avoiding lava or hopping on stones while walking. I played just like other kids, but entirely to myself. I never involved others.

Although, as his parents, I would put significant weight on your instinct that he's not having fun with it. I was having fun.

Have you asked what will happen if he doesn't watch his steps?



FanBoy11
Hummingbird
Hummingbird

Joined: 17 Apr 2016
Age: 1947
Gender: Male
Posts: 22
Location: Boston

23 Sep 2016, 2:32 pm

Thank you all so much for your replies!

Yes, does seem like a ritual. My concern was that it was an anxiety based response like OCD ( though I don't wish to upset anyone with any labels, nor am I saying that is what little man has).

Unfortunately LM's speech at the moment is limited to learned statements ( which he uses appropriately) and scripts ( also sometimes uses in hysterical and appropriate ways- he has a great sense of humor :)) so asking him why he is doing that isn't going to get us a response.

He just started kindergarten last week and while he is always happy to go and loves his teach, I think it is a lot for him all of a sudden to be in a formal program which while very supportive and visual, does not doubt put significant stress on his sensory system.

We don't want to interfere with a ritual if its self regulating, I guess I just worry that is it anxiety that he can't tell me about verbally.

I can't tell you all what a relief it is to have a forum like this as a non autistic parent. We are always struggling with trying to find a balance between making LM comfortable in the NT world but respecting and expanding on his unique personality.

MZ



Jute
Velociraptor
Velociraptor

User avatar

Joined: 11 Sep 2016
Gender: Male
Posts: 400

23 Sep 2016, 2:40 pm

Perhaps his little ritual is a way of creating a sense of sameness and comforting familiarity, to help him cope with the changes he's recently been going through, such as starting school etc?


_________________
Gamsediog biptol ap simdeg Bimog, toto absolimoth dep nimtec gwarg. Am in litipol wedi memsodth tobetreg bim nib.

Somewhere completely different:


Autism Social Forum

I am no longer active on this forum, I've quit.


FanBoy11
Hummingbird
Hummingbird

Joined: 17 Apr 2016
Age: 1947
Gender: Male
Posts: 22
Location: Boston

23 Sep 2016, 3:16 pm

Hi Jute,

Thanks for the insight. It certainly is a possibility. We have noticed that he is doing more verbal stimming too- for LM this is very different from his scripts which he uses to communicate. I know he finds the verbal stimming comforting and we are certainly not attempting to moderate that. Sounds like we should be patient and give him more decompression time. Also sounds like many of are saying not to stress that this ritual is hurting him in anyway :) So that's very good to know!

MZ



FanBoy11
Hummingbird
Hummingbird

Joined: 17 Apr 2016
Age: 1947
Gender: Male
Posts: 22
Location: Boston

23 Sep 2016, 3:21 pm

kraftiekortie wrote:
Seems like it's sort of a ritual.

I was classically autistic, then I turned "Aspergian" when I acquired speech at age 5.5.


That is so interesting! As I said, it's not that the label matters to us per se, but I believe it may be helpful when talking to LM about his autism. I'm glad to meet another "Aspie" who was "speech delayed", did you just start using speech all of a sudden? If I can ask, were you aware of what was being said to you/about you in the time before you started speaking?

I ask because my gut says that LM is very aware of what is being said about him and I make a point to mention this to teachers, therapists etc because I don't want any of the typically clinical and often limiting speech be used around him that would affect his confidence in himself. I also often wonder how much he understands of what we are saying to him, mostly, does he know that we love him and that we are trying our best to be there for him in whatever limited way we can as non autistic parents?

Thanks for sharing your insight, it is a profound gift to us
MZ



kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

23 Sep 2016, 4:02 pm

As I recall, I really wasn't too aware of the world around me until around the time I started speaking. I have snippets of memories of before that time. I did know my numbers and letters, and was able to read some words by the age of 4. And I was toilet-trained at age 2 1/2. At age 5 1/2, I picked up Dr. Seuss' "Green Eggs and Ham," and started reading it. I didn't like it because I didn't like either eggs or ham. I don't remember a time when I didn't know how to read.

By the time I was 6, I was able to speak like "normal" 6-year-olds. I already knew how to go to the store, buy something, and get the correct change. I started dressing myself then, too. I wasn't able to write, though, until well past my 6th birthday. I remember when I wasn't able to write.



Last edited by kraftiekortie on 23 Sep 2016, 4:08 pm, edited 1 time in total.

the_phoenix
Veteran
Veteran

User avatar

Joined: 30 Jan 2008
Gender: Female
Posts: 2,489
Location: up from the ashes

23 Sep 2016, 4:07 pm

FanBoy11 wrote:
I ask because my gut says that LM is very aware of what is being said about him and I make a point to mention this to teachers, therapists etc because I don't want any of the typically clinical and often limiting speech be used around him that would affect his confidence in himself. I also often wonder how much he understands of what we are saying to him, mostly, does he know that we love him and that we are trying our best to be there for him in whatever limited way we can as non autistic parents?


If I may jump in ...

LM may well have a remarkably higher IQ than most kids his age, and be highly sensitive.

In my case, thank God that nobody labeled me as an Aspie or autistic ... it was hard enough to learn when I started kindergarten that I had a "speech impediment" and have other kids laugh at me for the way I talked. Before kindergarten, I had been happily accepted, accent and all, by the friendly neighborhood kids. Good thing that I loved reading and learning, so I enjoyed school in spite of the social challenges. By second grade, I was labeled "gifted" ... meaning that teachers loved me and other kids in school tended not to like me.

As for whether LM knows you love him ... I would say, yes. And that the best "treatment" for his autism is your love. Take him to the zoo, take him to amusement parks, take him out for ice cream and movies, explore his interests (notice I didn't say "special interests"). My mom introduced me to reading and Spanish early on. My dad introduced me to astronomy and magic (coin tricks, card tricks, rope tricks). I was playing tunes on keyboards whenever I could find a xylophone toy or the piano at my grandparents' house. I was expected to help out around the house, mostly by doing the dishes. I was treated normally at home by my family while growing up, probably because I had no autism label.

...



kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

23 Sep 2016, 4:09 pm

Phoenix: always looks lovely when she emerges from the Ashes!

The Ashes have much intellectual substance in them, which she uses when she emerges from them.



the_phoenix
Veteran
Veteran

User avatar

Joined: 30 Jan 2008
Gender: Female
Posts: 2,489
Location: up from the ashes

23 Sep 2016, 4:25 pm

kraftiekortie wrote:
Phoenix: always looks lovely when she emerges from the Ashes!

The Ashes have much intellectual substance in them, which she uses when she emerges from them.


Thanks, my good friend kraftiekortie ... :)

... and you've provided me with a good segway.

Last post, I described many good aspects about my life. As a phoenix on the spectrum, there are definitely times when I crash and burn, ending up in the ashes. There are definitely obstacles, hard times, challenges to overcome. There are some things I prefer not to share on a public forum.



kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

23 Sep 2016, 4:29 pm

And that is, most definitely, your right as a human being.

Sometimes, I might go into a cocoon. Hopefully, I always emerge as a butterfly!



somanyspoons
Veteran
Veteran

Joined: 3 Jun 2016
Age: 48
Gender: Male
Posts: 995

23 Sep 2016, 4:52 pm

This is a double post. OP, please refrain from posting the same thing twice in different areas. Those are the rules of this board. It splits the conversation and it confuses people.



Jute
Velociraptor
Velociraptor

User avatar

Joined: 11 Sep 2016
Gender: Male
Posts: 400

23 Sep 2016, 4:58 pm

In defence of the OP, who is new here, the thread was initiated on the parents forum, where someone suggested that it perhaps belonged elsewhere. Perhaps a mod could simply delete the thread over at the parents forum or merge it with this one?


_________________
Gamsediog biptol ap simdeg Bimog, toto absolimoth dep nimtec gwarg. Am in litipol wedi memsodth tobetreg bim nib.

Somewhere completely different:


Autism Social Forum

I am no longer active on this forum, I've quit.