Newly diagnosed. No social issues but lots of stimming. What to do?

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

Moderator: ModeratorBill

msc75
Posts: 3
Joined: Fri Sep 16, 2016 1:04 pm

Newly diagnosed. No social issues but lots of stimming. What to do?

Postby msc75 » Fri Sep 16, 2016 2:20 pm

My son was just diagnosed at 31 months at his early intervention center as highly functioning on the spectrum. I am looking into a second opinion as the evaluation and report had many inaccuracies in my opinion, but in the meantime I am trying to educate myself as much as I can.

We initially started with the early intervention center for speech therapy at 25 months since his doctor was concerned he wasn't talking. Recent developmental tests showed receptive language advanced for his age as well as advanced cognitive skills, but he had no words. In the last 2 months, suddenly his language exploded! He suddenly said like 200 words in the first week and now he has words for almost everything, uses sentences too. Pronunciation and enunciation is still not great. Most people would probably understand only 25% of what he's saying, but at least he's trying like crazy. His diagnosis for ASD was before he had any words.

My son has never exhibited any of the social reciprocity issues on the ASD checklists. From infancy, extremely strong eye contact, loves people, constantly wanting our attention, pointing and showing us things, insists on playing with us, great non verbal communication with gestures and facial expressions, loves "performing" his skills or tricks for people, strong sense of humor, jokester, extremely socially and emotionally aware, will pick on people's moods/expressions immediately, has a lot of empathy and compassion, superb imitation skills. Even the evaluator could not find any problems in his areas, except saying he does not play with the kids at his part-time daycare to the same extent he does with adults.

His issues that triggered the eval are mostly on the sensory side. He has a lot of the typical ASD stims. Tiptoe walking, flaps hands and jumps up and down when excited, stares at ceiling fans, stares at moving marquees, spins his toys (not everything, but he has his specific spinning toys), plays with a limited number of toys, gets extremely upset during haircuts, frightened of some sounds. Some of these have improved over time. The amount of time spinning and staring at rotating things have decreased, as his interest and skills in other things grew (extremely good at puzzles, likes the playground etc.) ; but they are still there and I would say his ways of playing are still very limited compared to other kids. His gross and fine motor skills are on the lower average and he is not interested in trying a lot of new things. The sound sensitivities, rigidity, temper tantrums have all improved drastically after turned 2, after verbal communication and understanding increased. I can usually explain to him "this is just a hair dryer, it won't hurt you" and then he's ok with it for the most part. His bossiness and always wanting things his way are also improving as I can now reason with him (for example "first handwash, then TV"); and he never has the transitional issues or temper tantrums at daycare. They describe him as a quiet, gentle, sweet child that is behind his peers in language and fine motor skills, but loves music, singing, dancing, knows his letters numbers etc.

Given how he has none of the social reciprocity issues and almost all of the repetitive/characteristic behaviors, I am puzzled as to what kind of therapy he needs if any. The only options offered to me after the diagnosis were intensive ABA 20-40 hours a week or placing him in a special needs school. I feel both of these are too excessive in his case. Me and my husband think we should continue with speech therapy and seek additional occupation therapy to help with his motor skills and self-help skills such as putting on clothes, using a fork etc. Would occupational therapy also address his stimming, limited play skills, and rigidity issues? Or should I focus on SPD and seek sensory integration therapies?

Another big question I have is should the stims even be discouraged... When I started doing my research, I realized I am probably on the spectrum as well. I had a stim my whole life (except I didn't know there was a word for it and I thought I was the only person in the world that did it) . It involves shaking a tassle, clapping hands, going into a complete trance, probably becoming cross-eyed, and playing a scenario in my head very intensely, most of it based on mathematical calculations. I just never do it in front of other people. I am also a life-long tiptoe walker, and just thought I had missed my calling to be a ballerina :) Terrible gross and fine motor skills. Yet all my life I was perceived as very intelligent, academically very successful, no social problems despite being highly introverted. Somehow I think had if I had been labeled with ASD early on, my life would have been less successful and my self-esteem would have taken a huge hit. I also would not like to have been "treated" for my stim as to this day it brings me intense relief and joy. My parents say my son is just like me at my age and I should stop worrying, especially since his language is fastly improving and he seems to adapt ok at his regular daycare. The early intervention center folks of course disagree and say that's just ignorance; that everyone on the spectrum need intervention and intensive therapy right away. I am in the middle thinking the label doesn't matter, it's not a problem until it's a problem, but I don't know if it IS a problem for him.

I would like to hear some opinions on parents with experience, especially of the more social and verbal kiddos with sensory issues. I don't want to just start 20-30 hours of weekly ABA blindly because that's all insurance covers.

jaumeb
Posts: 167
Joined: Fri Mar 25, 2016 10:48 am

Re: Newly diagnosed. No social issues but lots of stimming. What to do?

Postby jaumeb » Sun Sep 18, 2016 10:56 am

If you feel you are in the spectrum you can experiment and see what works for you to help the community get a better understanding of this disease and possible treatments.

Seba2013
Posts: 1
Joined: Mon Sep 19, 2016 12:16 pm

Re: Newly diagnosed. No social issues but lots of stimming. What to do?

Postby Seba2013 » Mon Sep 19, 2016 2:27 pm

msc75 wrote:My son was just diagnosed at 31 months at his early intervention center as highly functioning on the spectrum. I am looking into a second opinion as the evaluation and report had many inaccuracies in my opinion, but in the meantime I am trying to educate myself as much as I can.

We initially started with the early intervention center for speech therapy at 25 months since his doctor was concerned he wasn't talking. Recent developmental tests showed receptive language advanced for his age as well as advanced cognitive skills, but he had no words. In the last 2 months, suddenly his language exploded! He suddenly said like 200 words in the first week and now he has words for almost everything, uses sentences too. Pronunciation and enunciation is still not great. Most people would probably understand only 25% of what he's saying, but at least he's trying like crazy. His diagnosis for ASD was before he had any words.

My son has never exhibited any of the social reciprocity issues on the ASD checklists. From infancy, extremely strong eye contact, loves people, constantly wanting our attention, pointing and showing us things, insists on playing with us, great non verbal communication with gestures and facial expressions, loves "performing" his skills or tricks for people, strong sense of humor, jokester, extremely socially and emotionally aware, will pick on people's moods/expressions immediately, has a lot of empathy and compassion, superb imitation skills. Even the evaluator could not find any problems in his areas, except saying he does not play with the kids at his part-time daycare to the same extent he does with adults.

His issues that triggered the eval are mostly on the sensory side. He has a lot of the typical ASD stims. Tiptoe walking, flaps hands and jumps up and down when excited, stares at ceiling fans, stares at moving marquees, spins his toys (not everything, but he has his specific spinning toys), plays with a limited number of toys, gets extremely upset during haircuts, frightened of some sounds. Some of these have improved over time. The amount of time spinning and staring at rotating things have decreased, as his interest and skills in other things grew (extremely good at puzzles, likes the playground etc.) ; but they are still there and I would say his ways of playing are still very limited compared to other kids. His gross and fine motor skills are on the lower average and he is not interested in trying a lot of new things. The sound sensitivities, rigidity, temper tantrums have all improved drastically after turned 2, after verbal communication and understanding increased. I can usually explain to him "this is just a hair dryer, it won't hurt you" and then he's ok with it for the most part. His bossiness and always wanting things his way are also improving as I can now reason with him (for example "first handwash, then TV"); and he never has the transitional issues or temper tantrums at daycare. They describe him as a quiet, gentle, sweet child that is behind his peers in language and fine motor skills, but loves music, singing, dancing, knows his letters numbers etc.

Given how he has none of the social reciprocity issues and almost all of the repetitive/characteristic behaviors, I am puzzled as to what kind of therapy he needs if any. The only options offered to me after the diagnosis were intensive ABA 20-40 hours a week or placing him in a special needs school. I feel both of these are too excessive in his case. Me and my husband think we should continue with speech therapy and seek additional occupation therapy to help with his motor skills and self-help skills such as putting on clothes, using a fork etc. Would occupational therapy also address his stimming, limited play skills, and rigidity issues? Or should I focus on SPD and seek sensory integration therapies?

Another big question I have is should the stims even be discouraged... When I started doing my research, I realized I am probably on the spectrum as well. I had a stim my whole life (except I didn't know there was a word for it and I thought I was the only person in the world that did it) . It involves shaking a tassle, clapping hands, going into a complete trance, probably becoming cross-eyed, and playing a scenario in my head very intensely, most of it based on mathematical calculations. I just never do it in front of other people. I am also a life-long tiptoe walker, and just thought I had missed my calling to be a ballerina :) Terrible gross and fine motor skills. Yet all my life I was perceived as very intelligent, academically very successful, no social problems despite being highly introverted. Somehow I think had if I had been labeled with ASD early on, my life would have been less successful and my self-esteem would have taken a huge hit. I also would not like to have been "treated" for my stim as to this day it brings me intense relief and joy. My parents say my son is just like me at my age and I should stop worrying, especially since his language is fastly improving and he seems to adapt ok at his regular daycare. The early intervention center folks of course disagree and say that's just ignorance; that everyone on the spectrum need intervention and intensive therapy right away. I am in the middle thinking the label doesn't matter, it's not a problem until it's a problem, but I don't know if it IS a problem for him.

I would like to hear some opinions on parents with experience, especially of the more social and verbal kiddos with sensory issues. I don't want to just start 20-30 hours of weekly ABA blindly because that's all insurance covers.



Your description is like you talking about my kid so so similar, I want to add the he like to play in the park but no with the swing slides climber etc he like to play around with the trees leafs he love grass also he like to stepping caps that make noise.
The psychologist who evaluated also had doubts and she said we going to send the info to a team of 4 5 people to re evaluate him.
he knows the calendar apart from that count to 20 and names each letter of the alphabet all the animals with sounds he is 34 months old. I'm he dad And I plan to fight back with all the tools that I can get. No more crying for me. This video gave me hope
https://youtu.be/0yn4SBNSkg4 I post any news.
Sorry about my English is my second language.

msc75
Posts: 3
Joined: Fri Sep 16, 2016 1:04 pm

Re: Newly diagnosed. No social issues but lots of stimming. What to do?

Postby msc75 » Fri Sep 23, 2016 7:27 pm

jaumeb wrote:If you feel you are in the spectrum you can experiment and see what works for you to help the community get a better understanding of this disease and possible treatments.


Not sure I understand the comment...I have never felt I am on the spectrum as I didn't even know about it until my son got diagnosed and I never felt the need to label or treat my "stim". It's just something that I do and never hindered me at anything else in life.

msc75
Posts: 3
Joined: Fri Sep 16, 2016 1:04 pm

Re: Newly diagnosed. No social issues but lots of stimming. What to do?

Postby msc75 » Fri Sep 23, 2016 7:32 pm

Thank you seba2013. May I ask where you live that you were offered the option for a second review by 4-5 specialists? Yesterday I found out the person who diagnosed my son didn't even bother to speak to his speech therapist even though they work in the same building! His speech therapist who's been working with him for 6 months was very surprised at the diagnosis and said my son is the most social, outgoing kid in his class, always the first to greet the new kids, and the most improved in his speech that he's the model child other families look up to. It shocks me that someone is so quick to give a diagnosis without bothering to consult any other professionals that are more familiar with my son.


Return to “Autism Support/Education/Technology”