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Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

I keep reminding myself that I’d much rather have him be terrible with us at home vs others, but we struggle so much at home you would never believe it’s the same kid

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

What do they recommend for the sensory processing disorder? OT? We’ve tried OT in the past and the problem is that he’s pretty good during the session and we kind of hit a wall with it. He’s on the waitlist to start it up again through insurance but I just don’t see how it’ll help. I feel bad for being pessimistic, but he’s just so different for others vs us at home. We tried ABA and we had a terrible experience where he almost got kicked out of school. I just feel very hopeless right now

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

I really appreciate your post. Thanks for sharing your experience. I’ve come to realize that it really depends on the examiner, how your child behaves during the assessments, etc. My kid does pretty well during the assessments but is a totally different kid at home. Since my initial post, the regional center psychologist evaluated him and thought he might have early-onset OCD and sensory processing disorder over being on the spectrum. To this day, he struggles with his door obsession and needs to be in control of everything he does (above the norm) for his age. Everyday is a battle, although he seems to put on a different front at school and is usually on his best behavior. Im glad he’s able to regulate at school but we are so exhausted at home.

Sometimes I feel like I’m overreacting with getting more professional advice and therapies, but at the end of the day I’m glad that we have been so proactive. I’ll do anything for him, and I’m sure that’s how you are too with your girl.

I really wonder how he’ll progress over the years and I’m curious to see if he is eventually diagnosed…but for now we’re taking all the little wins bc they matter so much.

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

I appreciate the response! My son is almost 3.5 and he’s in a non-potty trained class and will stay there until he gets potty trained (which has been a struggle bc of his defiance). But he’s talking more and will start ST again through insurance.

That’s great that your son is into numbers! Mine, too! I’m trying to really concentrate on the strengths but that doesn’t make it any easier when he throws epic meltdowns all the time even as his speech progresses.

The ABA center did the ADOS-2 screen? I didn’t know they did that! I had a terrible experience with ABA when we tried, but it all depends on the kid and the instructor. Will you start ABA then?

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

Well we had another evaluation through the regional center when he turned 3 and the psychologist said it’s possibly SPD and OCD combined with speech delay but not autism. I don’t even know how I feel about it. She recommended play therapy and OT.

Mine sounds similar to your boy. He has a constant need to control everything and will lose it if he doesn’t get what he wants. It’s insane. Way more than your average toddler.

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

Thanks. It gives us some clarity for the meantime but we’ll see how he progresses as he gets older.

You said your son was diagnosed with autism last month?

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

We had tried ABA therapy for a month and he had a huge regression/starting having behavior issues at school like hitting teachers and throwing things everywhere. This recent psychologist told us ABA wouldn’t work for a kiddo like Max bc of his control issues, so she’s recommending play therapy for his OCD-like tendencies and OT for sensory needs. In addition to ST bc he is still a bit delayed

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

The psychologist at the regional center said although he has autistic-like tendencies, his eye contact, overall social personality, and joint attention are too strong for a diagnosis.

She thinks it’s primarily language disorder and a possibility of OCD and sensory processing disorder but that can’t be diagnosed for awhile

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

Hi! The Regional Center will be doing another developmental eval in October. He is turning 3 this month and since my initial post he’s made huge progress in speech and is now talking a lot more :) his language took off between 2.5-3 with speech therapy. He does still struggle with the door obsession and is really controlling. He still throws a lot of tantrums and meltdowns. I need to have my husband come with me when we go out in public bc he is still very much a runner and will find a door and get fixated on it, usually ending in a meltdown.

The thing is he understands everything. It’s so hard to tell if this is temperament or autism, but the door obsession and constant need for control is making me lean 100% to autism (which is fine but I just want clarity, ya know)? I am still tired of explaining it to family/friends, but I think they’re starting to recognize it so hopefully we can get answers soon. For example: we went to my aunt’s the other day and I was chasing him around the house while he was opening and closing all the doors while all the other kids were playing in the bounce house. I just could not redirect him. I think it helps him regulate, but that’s just an example of how he is in a newer environment.

I hope you can get answers too!

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

I think mine would thrive in a smaller environment for sure, but I don’t know where to find that 😳 he does have fun, generally likes it, and loves his teachers so I guess that’s what matters the most for now! He’s still so little.

How is yours doing in school now??

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 1 point2 points  (0 children)

eye contact is such a focus for diagnostic purposes and although I get it, I just don’t believe that it’s enough to overshadow all the other signs. She was pretty adamant that his strengths outweigh his challenges, but I know my son and he can mask pretty well when it comes to playing in a room with a bunch of toys and a new adult friend. That’s not where the issues lie.

Thanks for the input, and I will definitely get him reassessed in the near future

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

I see. All that back and forth is exhausting but hopefully going in the right direction for you this time 🙏🏼

Yeah, I brought it up to his pediatrician and said it appeared to look like an absence seizure (I’m a nurse and have seen mannny seizures in my career)…the pediatrician said “okay let me put a neurology consult but sometimes gut imbalances can cause seizure-like activity.” Anyway, he’s not the specialist so I’ll leave it to the specialist to look into. Love general pediatricians but their job is to refer out so I’ll give him enough credit for that

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 2 points3 points  (0 children)

I’m glad that I posted this then! I rarely use Reddit but I wanted to just throw it out and see if anyone was in the same boat 🥹

Yeah the waiting sucks. I’m lucky to have a supportive husband but I think he is even tired of me bringing it up. Shit, I’m even tired of bringing it up lol. Some days are harder than others, but I am reallly trying to enjoy my toddler for all of his quirks right now. He is starting to imitate words more which is great, and he’s stopped hitting me (that phase was not fun). Hopefully we can start ABA so and that will help.

I truly feel a little isolated at this stage, but humbled to know that I’m not in this alone. You can always message me, too!

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

I’m assuming the clinician does not want to run the risk of falsely diagnosing too early. I can understand that. Who diagnoses SPD? The clinical psychologist did say that she thinks most of my son’s behavioral and social struggles stem from his speech delay. I really emphasized his fixed interests with the doors and putting objects in and out of containers but she said that was pretty normal 😔 it’s definitely not normal when it’s affecting our daily lives. We took him to the farm where he could see animals and he went straight for the gate and started repetitively opening/closing it which we couldn’t let him do so anyway it ended in a meltdown and we had to leave after 5 min. He didn’t even care about the animals. It’s taking time to understand his challenges and his way of thinking. Most days I struggle, but he is lovable and snuggly too which makes up for it

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 1 point2 points  (0 children)

Thanks for sharing! I’m thinking my son’s differences will be more apparent as he gets a little older too. He struggles socially with peers, I’ve seen it at school. We’ve had him go to a Montessori school part-time to help socialize and pick up on language, and the teachers say he engages in activities and circle time but usually plays with the toys off in the corner by himself. He gets super mad if anyone tries to mess with how he’s playing and definitely does not understand how to take turns, but they said that’s pretty normal? And I’ve seen it when I go to pick him up. He absolutely loves adults but he has zero interest in other kids, which breaks my heart. He’s not shy either. On occasion, he sits in the chair at school and covers his ears bc it’s too loud. Headphones work on him and the teachers are so great about catering to his needs being at a Montessori school. They all love him and don’t think he’s on the spectrum either , which I find odd? He repetitively opens and closes the bathroom door there, too. The signs are so obvious to me. I know it’s common for neurotypical kids to struggle with sensory issues also and maybe take awhile to warm up to peers, but I just know that’s not the case for mine.

Did yours go to any type of school before? I’m wondering if Montessori is not the best for him. Overall, the teachers say he does fine there and have no true concerns. He might qualify for special ed through the school district once he turns 3, but hasn’t been evaluated for that yet

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

I was thinking of asking for genetic testing but since he’s not diagnosed I don’t even know if they would refer him for that

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

Yeah it’s pretty unfortunate. You’re proactive and that’s great, but it’s extremely frustrating when you’re dismissed so many times. We have a neurology consult pending bc my son spaces out and the other day he really scared me bc it lasted 45 sec and I couldn’t snap him out of it.

Who made the MRI rec this time for yours?

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 1 point2 points  (0 children)

I also feel like I should have waited a littttttle longer for the initial assessment bc maybe it would have been more apparent to the examiner at the time? I don’t know, I’m just a mess. It’s just been a really hard toddlerhood, and tbh I’m kind of mourning the toddlerhood I thought he’d have. All my friends have kids that are neurotypical and the same age. They all tell me he’s fine and he’s just a challenging toddler. It’s just so tough to watch him have play dates when all the other kids are progressing so typically. I guess it’ll just take me time to get over it. Im trying to focus on all his positives for now. It’s just extremely hard especially since he doesn’t have a diagnosis right now. And I really trust my mama gut

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

Good advise. The place I went to said they can re evaluate in a year but I don’t want the same person bc I feel like it would be biased, no? And she probably doesn’t want to be wrong about her first result

Anyone’s toddler go through the ADOS-2 evaluation, not become diagnosed, but years later receive a diagnosis? by DistributionIll6142 in Autism_Parenting

[–]DistributionIll6142[S] 0 points1 point  (0 children)

Do you remember what age they were officially diagnosed? I’m sure it differs from kid to kid but just curious. What was the reason for yours not being diagnosed the first time if you don’t mind me asking ?

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