Where do I start? — The Bump
Special Needs

Where do I start?

I'm sorry in advance that this is turning out to be rather long-winded, but my momma gut is telling me that something more is going on and I could really use some feedback. My son, now 3yrs. 2mos, was born at 30 weeks. We followed an early intervention tracking program from 18 months to 3 years. He never fully qualified for services because he fell just outside of the "require services" qualifications even though he was delayed in a number of areas. I questioned our pedi at my son's 2 year appt and after I filled out a questionnaire our pedi did a "quick eval once over" and concluded he was not autistic--though DS1 screamed and cried through the entire 3 minute evaluation of trying to get DS1 to give him a hug--which he eventually did. 

Fast forward a year later, and my husband and I are noticing more little quirks and when you add them all together, things just seem off. My husband is a teacher and I was a teacher before staying at home, so I'm not totally unfamiliar with autistic children--but I've obviously never had to diagnose one or go through the process with a younger than school age kiddo. Things we have noticed increasing:

  • Needs to be rubbing something most of the time---especially when drinking/eating. His hands are usually in his shirt or his pants. (ugh! this one drives me crazy!)
  • repeats himself. ex) "mommy go in the car soon?", when I answer no, he will repeat "not go in the car yet" 5-6 times and it usually leads to running away crying. This happens numerous times throughout the day in many different conversations
  • He seems to "get stuck" in phrases or noises
  • Recently, in Sunday School (a class of 8 kids) he has started having meltdowns specifically during "craft" time at the table. He will either run around the room crying or just sit at the table crying until I remove him from the classroom. I haven't found another way to calm him down except remove him from the situation.
  • Transitions or going into a building or house (grandparent's homes included which we frequent often) he will either refuse to go in by falling onto the ground or fall onto the ground as soon as we get inside.
  • He gets VERY upset when DS2 (1 year) comes near the trains he is playing with. I thought for awhile he just needed time to adjust to having a sibling around.
  • Eye contact exists, but it's minimal.
  • He cannot follow a pointed direction--ex) while pointing, "look your train is right next to the toy box"
I want to be able to help him with whatever is going on…I just don't know the best way to do it. Any suggestions, any at all are greatly greatly appreciated. I'm feeling a little lost at the moment with what to do next. Thanks everyone! I've read through some of the posts and FAQ boards so I know you all are super helpful.


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Re: Where do I start?

  • banfrogbanfrog
    500 Love Its 500 Comments Third Anniversary First Answer
    member
    edited January 2015
    I would definitely pursue a proper evaluation. Our pediatrician ingnored my concerns until my DS1 tried to bite DS2 ear off and then couldn't understand why that was wrong. It was highly traumatizing for our whole family. The pedi referred us to a behaviorist who helped a lot who then referred us to a child psychologist specializing in ASD to get a proper eval done so that DS1 could get the services he needs.
    Trust your instincts.
  • Trust your gut.  Our pedi was no help.  In fact, she chose to share her opinion, her "professional opinion" that Chris had been "over diagnosed".  I'll give her that at the time he was still just 3 and maybe (if you squinted) his issues could've passed for toddler quirks but now, no way.  Some of these things are red flags. Have you seen a dev. pedi. yet?  They're better qualified to make that determination.
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    • Recently, in Sunday School (a class of 8 kids) he has started having meltdowns specifically during "craft" time at the table. He will either run around the room crying or just sit at the table crying until I remove him from the classroom. I haven't found another way to calm him down except remove him from the situation.
    • DD went through this in SS (running around anyway). For her in hindsight now that she can communicate it I'm 99% sure it was anxiety about what to do/doing it wrong because her ability to understand verbal instructions was minimal. We worked on following instructions and that mistakes were OK with her with the ABA team and social stories (using lots of visuals/pics) and it helped hugely. As did a S.S. about Sunday School in general. 
    • Also talking with her Sunday School teachers and giving them suggestions, such as explaining to her one step at a time has helped. We are extremely lucky that our Church has been very supportive and really open to working with DD to keep her included.
      As she has has become more verbal and we are able to better understand what is wrong it's become increasingly clear that a lot of her struggles are anxiety based and if we use social stories to explain expectations/what to expect she responds extremely well because it lowers her anxiety about what is happening.

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  • Welcome. Like PPs said, the waitlist for an eval can be long. I think our's wait was around 8 months. Hope you get some answers.
    DS 10/2012
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  • -auntie- said:
    I'm sorry in advance that this is turning out to be rather long-winded, but my momma gut is telling me that something more is going on and I could really use some feedback.

    Trust your gut. It does sound like your older son has some issues. I'd suggest asking for a referal to a dev pedi.

    My son, now 3yrs. 2mos, was born at 30 weeks.

    Some studies consider significant prematurity to be a risk for ASD.
    --YES! One of the reasons our radar has been a little more tuned towards the possibility when we started seeing some interesting things developing. Specifically, he was a preemie because of a condition that I had which further prevented blood flow and oxygen to him.

    http://www.marchofdimes.org/baby/autism.aspx

     We followed an early intervention tracking program from 18 months to 3 years. He never fully qualified for services because he fell just outside of the "require services" qualifications even though he was delayed in a number of areas. I questioned our pedi at my son's 2 year appt and after I filled out a questionnaire our pedi did a "quick eval once over" and concluded he was not autistic--though DS1 screamed and cried through the entire 3 minute evaluation of trying to get DS1 to give him a hug--which he eventually did. 

    Was this the MCHAT? It's a useful tool for screening, but not a diagnostic one. I know quite a few kids with ASD who passed the MCHAT as toddlers. One lives in my house. His PCP assured me DS wasn't on spectrum as well. We both know better now. Diagnosing ASDs is really beyond the expertise of a general pediatrician.

    --Yes, it was the MCHAT. At age 2, the results raised enough questions for the pedi to do his "quick look". So I wouldn't say he passed, but he also didn't send up fireworks for needing attention. In hindsight, I wish I had pushed for more than just his "quick look" because it really was ridiculous. Live and learn right?

    Fast forward a year later, and my husband and I are noticing more little quirks and when you add them all together, things just seem off. My husband is a teacher and I was a teacher before staying at home, so I'm not totally unfamiliar with autistic children--but I've obviously never had to diagnose one or go through the process with a younger than school age kiddo. 

    Sometimes it takes a couple years before signs are clearer around quirky behavior. While DS did have some quirks and superpowers even as a baby, closer to four was when he really started to seem different than his peers. I think anxiety played some part in the differences in his behavior.

    I think that's where we are. We've always said "ohh, that's him" or "he's just being Liam" because there was no other way to explain his quirks. There is definitely anxiety towards social situations and I'm seeing the differences with his peers growing.

    Things we have noticed increasing:

    • Needs to be rubbing something most of the time---especially when drinking/eating. His hands are usually in his shirt or his pants. (ugh! this one drives me crazy!)
    This is likely either a sensory seeking behavior or perhaps a self stimulating behavior- aka "stim" or stereotypy. 
    • repeats himself. ex) "mommy go in the car soon?", when I answer no, he will repeat "not go in the car yet" 5-6 times and it usually leads to running away crying. This happens numerous times throughout the day in many different conversations
    This sounds like palalia which is a form of echolalia and common glitch in children with ASD. Some kids also repeat snippets of dialog from DVDs, books they had read to them or what they've heard others say. Sometimes it can be quite subtle, as in the case of functional echolalai where they use scripts from another source instead of spontanteous language appropriately to communicate.
    • He seems to "get stuck" in phrases or noises
    Sometimes this is a stim. Stims ramp up sometimes when a kid is bored or anxious or sometimes just to entertain themselves.
    • Recently, in Sunday School (a class of 8 kids) he has started having meltdowns specifically during "craft" time at the table. He will either run around the room crying or just sit at the table crying until I remove him from the classroom. I haven't found another way to calm him down except remove him from the situation.
    Any idea why he is avoiding craft time? Does he generally not like to do crafts? Does he struggle with groups of children or his space being violated? What does he do during the rest of Sunday School? 
    --At home he enjoys doing crafty things. I think it more comes down to a matter of maybe being overwhelmed by everyone at the same table or not being able to understand the verbal directions. I know I ask him to do many things at home that he is able to do, but he can't always process the instructions unless I help him to get started. The rest of Sunday School he is usually playing or running around. More or less by himself. I'm making a point to do more watching in the coming weeks so I can more thoroughly take notes about how he behaves in social situations.

    Is his receptive language strong enough that you could create a Social Story about Sunday School? Removal solves the problem this week, but doesn't do anything to help him learn to be OK in the situation.
    -I agree. Which is why I'm trying to find some solutions. I think it could help, but it would probably take some time. Which isn't a problem, just have to work at it. :)

    Does he attend preschool of any kind or a MDO? How does that go?
    -No preschool yet, I'm highly concerned about putting him in that environment at this point. We do have an MDO and he generally keeps to himself. He will play with the other kids every now and then, but he's more of a loner.
    • Transitions or going into a building or house (grandparent's homes included which we frequent often) he will either refuse to go in by falling onto the ground or fall onto the ground as soon as we get inside.
    That's got to be difficult. Transitional issues are a classic red flag for ASD. Do you give him a heads up about your plans? This might be another situation that could respond to a Social Story.
    -We talk on the way to say Mimi or Nana's house about going to see them, going into their house playing with some toys there that I know he likes.
    • He gets VERY upset when DS2 (1 year) comes near the trains he is playing with. I thought for awhile he just needed time to adjust to having a sibling around.
    Are they a special interest for him? Does he have trouble sharing other toys or being near his brother generally?
    -Yes, very special. He can play with cars and other toys with his brother, but trains are the big problem.
    • Eye contact exists, but it's minimal.
    This may or may not mean anything.
    • He cannot follow a pointed direction--ex) while pointing, "look your train is right next to the toy box"
    That could be a red flag. Does he point himself to share with you? Like point to a train and then look back to make sure you're looking in that direction as well.
    I need to be watching for this. Seems strange that I can't answer this 100%, but I want to be certain before I fully answer.

    I want to be able to help him with whatever is going on…I just don't know the best way to do it. Any suggestions, any at all are greatly greatly appreciated. I'm feeling a little lost at the moment with what to do next. Thanks everyone! I've read through some of the posts and FAQ boards so I know you all are super helpful.

    I'd get on the waiting list for the best dev pedi in your area. It could take 6-12 months to be seen. You could also write your local school district requesting a "full multifactored evaluation in all areas of suspected disability". They could only offer an educational dx, but if your hunch is correct, it may come with preschool services to help prepare him for kindie.

    Would you recommend going the dev pedi route or through our local school/intermediate unit?


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  • -auntie-

    Yes I am in PA. We did a preemie evaluation with early intervention (0-3) when he was 1, but he was released from their tracking when he turned 3. I know I can fill out and submit 2 forms to get started with our Intermediate Unit but I'm not sure how to find or determine a good dev pedi or why/how that is important.


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  • SweetPeaKateSweetPeaKate
    500 Love Its Fourth Anniversary 500 Comments Photogenic
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    edited January 2015
    I'm in Berks County/Reading area, so likely Exton/Philly/Lancaster…maybe Hershey would be the biggest close areas.


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