3 yo delays, ASD evaluation, brain dump/questions UPDATED

[lucybrown]

ETA: updates within post.  Final update at end. 

If you've followed my saga, daycare shared some concerns about DS not meeting behavior expectations back in February.  His pedi said he falls within normal developmental ranges.  Daycare kept pushing, so I followed up with the pediatrician and pursued further evaluations.  We see some of the same areas of weaknesses at home, but not to the same extent.  Daycare fit is a major concern of ours and basically every professional we've seen agrees. 

Current status:
Diagnosed language delay - primarily receptive/processing.  Some expressive, which seems to be better when he's given enough time to get the words out. Is doing speech therapy through school district. 

Opinion of one psychologist in ASD/ABA organization - on the cusp of mild autism diagnosis.  She would diagnose mild autism based on what daycare is reporting. Pedi says these deficits are within normal range.  We fall somewhere in the middle.  She recommends intensive ABA, as that's what her organization does.  She also said that she didn't feel strongly about this recommendation if we're not 100% on board. What she's calling social skills deficits are things we're not seeing at the same level outside of daycare.  

2nd opinion is tomorrow.  It is a multi-factor/arena evaluation with the school district. He will be evaluated by another diagnostician, school counselor, OT, and PT.  He has been going to speech therapy this summer and she will share her evaluations with the team.  We're curious to see what happens here and what they recommend.  The district's 3K program seems like it could be a good fit for him.  We would then need to figure out child care for the afternoons. 

We're in this gray area and don't know what to do.  I think I want more opinions to ensure he is evaluated comprehensively and we can figure out what feels best to us.  I plan to take him back to the pediatrician.  What do I ask for?  A neuropsych eval?  I plan to ask to recheck his lead levels, as we live in an old house and this is a concern.  We also recently found out our radon levels were very high and had that remediated.  He also has so many food sensitivities, which absolutely impact his overall functioning.

If your child was diagnosed with mild autism, what supports or interventions did you pursue?  I was a line therapist in a ABA clinic at one point in my career.  I understand it well and while it is very successful, we have reservations.  We see his primary needs as fairly mild.  Language skills are our primary concern, with some sensory seeking/avoiding secondary.  His imaginative play is better when it's interactive.  In general, he functions better when someone is guiding him.  Social skills with peers could probably be better. He doesn't always respond when other kids approach him or he responds way late after they have lost interest. 

If you got this far, thanks for reading.  This gray area is really hard.  My gut says my kid needs some support, but intensive ABA seems like overkill. Still, we want to do whatever is best for our child at this time.  

[lucybrown]

Related: it's entirely possible our perception of "normal" is skewed. I left the first evaluation appointment in tears, basically feeling as though our entire family fits the ASD diagnosis criteria. H is introverted and socially awkward. I'm highly sensitive and easily overstimulated. DD has a lot of the repetitive behaviors. DD and I recently had neuropsych evals that led to ADHD and anxiety diagnoses.

[lessel]

I feel like my DS2 (3y) is somewhat similar. Although I feel like we have more trouble at home than daycare does. (He seems to tend toward shyness/introversion in that context.)

We were recommended to meet with and get him evaluated by a developmental pediatrician by our pedi at his 18mo visit. In our area that meant like $4k OOP costs and no clear sense of insurance reimbursement. And a long wait. We met with a developmental psychologist instead then. And after spending a half hour with him and us, and playing with him a bit, she thought that it was more the language issue (he was already in ST for expressive delay). She said we could do the full evaluation but it would likely come back either that he's very high-functioning or even just inconclusive. We added in some OT after that... all ST and OT for us is OOP because our insurance only covers if rehabilitative.

We've really 'graduated' from both ST and OT now. Met all of his goals. We did eval for the public school for special ed and he didn't qualify. So he's also in this gray area. Most of his behaviors that we struggle with could just be epic 3yo tantrum kinds of things. We do see behaviors that sort of don't really bother us, but appear to be signs of maybe ASD. A few are he lines things up... a lot. I know this is developmental normally for some kids, so it's a gray area, but he does it a lot. Crayons, monster trucks, books. And like he won't let me read him a book at night until he lines up all the choices on the floor in a very precise way... always similar books too, not mixing book types. He also jumps and kind of flaps his arms when he's excited, and he does this kind of tensing up thing where he brings his hands to his chin in this really tight/tensing way. So seemingly self-stimulating behaviors. But again, it's like this weird space where it's unclear. He's also started biting his nails too recently.

I feel like we need to get a private evaluation, but I also struggle with decisions and diagnoses being made on like one 2hr eval. When we met that developmental psychologist, he was like in the best mood ever and totally had zero issues. When we did an OT eval, he refused to engage with the therapist and stared at the wall for 15 minutes making zero eye contact. When we did the special ed evaluation with the school, he was great. It's just so hit or miss.

And to your point about you and your H... we have some of the same things going on. H probably should have gotten an ADHD dx as a kid. I've always been introverted and anxious. It's like how much of it all is personality type vs. disorder. And my gauge has been, when it gets in the way of him learning or doing something he needs to do. And from daycare's perspective, he's good in terms of all of that and just quiet. So...?

All that to say, I think we're in a gray area and don't know what to do either. 😕

[yourmother]

Our story is similar in that my DS's daycare pushed for evaluation. We went through our local school district and he had the full evaluation, where they gently told us at the end of the two hour session that he most likely was ASD. After their official diagnosis, he qualified for the school's 3yo special ed (can't think of the official term), which was only a half day. We had him diagnosed officially by a developmental pediatrician who prescribed ABA therapies. Luckily we found an AMAZING ABA clinic that is completely compassionate and data-driven. He went to school the first half of the day and therapy during the second half of the day.

I realize "ABA therapy" means different things to different people. The place we go to has become a second family to us and my DS's improvement was visible within 2 weeks or so. He has only improved year over year and they are probably the biggest part of that growth.

[brady2012]

This sounds very similar to my nephew's diagnosis. His parents faced similar issues because it was not a clear cut diagnosis. They did ABA as well as a few other interventions (I cannot recall now) for awhile and they also moved him to a play based daycare/preschool that was for children that were either diagnosed with or at risk for ASD. I think it was affiliated with a children's hospital.  I know this was the key for him because it allowed him thrive in a classroom where the teachers were able to meet his needs.  He had a very smooth transition to kindergarten and I don't believe he has an IEP at this point (2nd grade).

[ellipses84]

My stepson and my brother are both Dx’d ASD. Both were diagnosed fairly late in childhood and had misdiagnosis prior to that. Neither are blood relatives to me but I can see similarities with others in our family including my kids. Like we all have / had a lot of sensory issues. My attitude is ABA will likely only help, and not harm, although I understand not wanting a formal diagnosis at this age. You could always try it and stop if you feel it is not beneficial. What are your concerns with it?

Given your family history and professional background, your parenting may be naturally meeting his needs which makes him appear borderline, but if he grew up in a less stable home or if his school does not know how to handle his issues, ASD may be more apparent in those environments. I just wanted to point that out as another way to look at it. Think of all of the older adults who grew up without an ASD diagnosis. Some of them may have struggled at times but many of them became successful adults without a diagnosis or interventions. It truly is a spectrum and those who are high functioning learn coping strategies over time. I think interventions just help kids get there faster and struggle less.

[lucybrown]

Jul 14, 2021 10:01:48 GMT -5 lessel said:

 It's like how much of it all is personality type vs. disorder. And my gauge has been, when it gets in the way of him learning or doing something he needs to do. 

We've said the exact same words.  His pedi thinks daycare's expectations are not realistic for a 3 year old and serve group child care better than individual differences.  I guess the psychologist felt what daycare said was relevant enough to diagnose.  She agreed all of his needs were very mild. All assessments were borderline or barely met diagnostic threshold.   We trust our pediatrician's opinion more than daycare's. 

We spent like 60-90 minutes with the psychologist during the evaluation.  She noted a bunch of behaviors/deficits that I didn't necessarily agree were outside of normal range for a 3 year old.  I think she was very respectful and good, but I'm not sure I agree.  We would like another opinion.  If multiple people can't help but feel this way about a lot of things she said meet criteria. What is within normal developmental range for a 3 year old and what indicates ASD?
 
At home, where his needs are met and he has people to prompt as needed, most of his quirks are not impairments.  We don't care if he lines up his toys or carries odd objects around.  None of his behaviors are rigid or cause disruption to our family life.  In the past few months, we've made a concerted effort to improve skills daycare wants him to complete independently.  He's made big improvements and is quite capable of putting shoes on, clearing his spot after meals, etc.  His pedi thinks a 3 year old should need reminders of these things.  

And just in case we are wrong and he does meet criteria, we'll continue with the evaluations.  I'm hopeful about the district one tomorrow.  We need to think more about ABA and look at what options exist that may be a good fit for him.  There is a lot of variation and many places don't take kids after age 4.

The grey area sucks.  I kind of hate how diagnosis seems necessary for intervention.  We're not opposed to a diagnosis if it helps him, but I also don't want him to be labeled inappropriately. 

[lessel]

lucybrown What are some of your daycare's expectations? (Or can you point me to where you've listed them out before?) Because the shoes thing and clearing his spot after meals are not things are not things our DS does/can do.

[plutosmoon]

My DD is now almost 9 and was diagnosed with ASD when she was 3. I'd classify it as mild, although the developmental pediatrician didn't distinguish. We did a full eval with the school district and followed up with an ADOS assessment by a developmental pediatrician. We also did some rule out assessments like hearing tests to make sure there wasn't an underlying physical reason. We also opted for a genetic test to see if there was something else at play, there wasn't.

At the time of her official diagnosis she was already receiving OT, PT, speech and was enrolled in the district preschool, with a combo of typical and special needs children. My school district did not require any sort of official diagnosis to get intervention, we had none at the time we started services. The intervention they provided was strictly based on their assessments.

Once we got her official diagnosis she did a specialized program for kids on the spectrum. We never pursued ABA, it was not offered by the school and I couldn't afford it privately, plus I don't think there was a provider within 50 miles. She significantly improved by observing and interacting with other kids, so I focused on socialization and finding peer models. We expanded her to full day public prek when she was 4, enrolled her several new activities, and found a local social group offered by United Cerebral Palsy, this one was a big help. By the time her IEP came up for renewal when she was 4, speech and the specialized program were not needed. We pulled them, and she did OT/PT until the end of her 3rd year of pre-k. By K, we no longer needed an IEP. I think some of the things we enrolled her in had similar approaches as ABA would have. My focus was on getting her as much as I could through the school district. Fortunately, she improved significantly, most people meeting her and interacting with her now can't tell she is on the spectrum.

She's still very particular about her schedule, and changing routines is hard for her, but she's come really far. She really needs other kids around to model behavior, but I guess that's really common in girls with ASD. I see her prek teacher around and she always tells me she's like a different kid now. The school district really can work wonders for a lot of kids that might be all they need. My district is really great, I never had to fight for a single service, I got pretty much everything I asked for, I know not all are like that though.

[lucybrown]

Jul 14, 2021 11:33:44 GMT -5 ellipses84 said:

My stepson and my brother are both Dx’d ASD. Both were diagnosed fairly late in childhood and had misdiagnosis prior to that. Neither are blood relatives to me but I can see similarities with others in our family including my kids. Like we all have / had a lot of sensory issues. My attitude is ABA will likely only help, and not harm, although I understand not wanting a formal diagnosis at this age. You could always try it and stop if you feel it is not beneficial. What are your concerns with it?

Given your family history and professional background, your parenting may be naturally meeting his needs which makes him appear borderline, but if he grew up in a less stable home or if his school does not know how to handle his issues, ASD may be more apparent in those environments. I just wanted to point that out as another way to look at it. Think of all of the older adults who grew up without an ASD diagnosis. Some of them may have struggled at times but many of them became successful adults without a diagnosis or interventions. It truly is a spectrum and those who are high functioning learn coping strategies over time. I think interventions just help kids get there faster and struggle less.

Valid points that we've considered.  Daycare is the only place with concerns that something significant is going on.  Due to other factors, I don't fully trust their opinions.  We're seeking evaluations because if something is going on that we've missed, we want to know and provide him with the support/intervention needed. 

ABA is only financially feasible with a formal diagnosis.  I also don't necessarily agree that ABA can only help, not harm. It's a big commitment and success depends on family support.  Misdiagnosis and the wrong treatment can and do cause harm.  I have permanent injuries from a misdiagnosis and unnecessary surgery.  Our reservations about this one diagnosis are enough for us to pause and explore additional opinions. 

[luv2rn4fun]

I haven’t read all the comments but wanted to give my experience. DS1 has ASD. School would say he’s mild, I think he’s more moderate due to aggression, social delays, and community safety.

We did a neurologist eval and school district eval at the same time. They both agreed on diagnosis.

We started ABA (20 hours per week, were recently doing 10-15 per week two years later). He also does speech and social skills at school and started 2x per week OT a year ago (1x since end of April).

ABA was great til COVID, now it’s horrible and not working due to lack of experience and turnover. I would still do it because I know it can work.

OT has been huge for us! ABA has been good for social skills. Maybe you could do a combination and have ABA at school to facilitate social skills and language delays? We did this for the year he was in TK.

Also, DS1 seems so “normal” on many levels…but then there are the real issues where you really see how he’s not neurotypical, if that makes sense. The longer we are on this road, the more we know it’s the right diagnosis. I felt a lot like you when my son was 3 (but still pushed for answers…unfortunately he wasn’t diagnosed til 4.5yo…I wish we could have started intervention sooner).

[lucybrown]

lessel, I'll dm you with the link. I don't want to share it publicly for privacy reasons.

They have indicated he is meeting age appropriate milestones on their checklist. Their concerns are that he does not follow classroom behavior expectations/routines. They claim the 2.5 year olds follow the daily routine and transition between activities well and DS needs individual prompting through transitions at times. Among these activities are dressing in winter gear for outside, washing hands, independently leaving table and clearing spot after meals. Going potty independently, etc.

They've also noted that he often plays alone and his quirks with lining up toys or looking at car wheels, etc. He also frequently does these things without any issue at all.

None of these behaviors are surprising. The issue is that there is disagreement over what is an impairment and what is within normal range for a 3 year old. His SLP from the district has visited daycare several times and noted that he's a different kid there. In their small group and individual sessions, she sees the kid we see at home. Quirky with some sensory needs and language deficits, but mostly functioning fine.

I'm baffled at how they get my child to sit at the table for longer than needed. He does need assistance with handwashing. I think the water is a sensory thing for him. He is easily redirected, IMO. We'll also own that our anxious parenting has caused both of our children to freeze up until instructed to do things. We're working on it. The pandemic made this worse.

[osulori]

Jul 14, 2021 12:23:17 GMT -5 lucybrown said:

I agree 100% on this.  I've seen a lot of kids respond really well to ABA, but in my experience the kids that get the most benefit from it have been kids who need a lot of help with behavior and developing basic skills (which often go hand in hand) so that they can be safe in their environment and express themselves effectively.  My patients that have more mild presentations have struggled more with the intensive ABA format that a lot of providers "recommend" or push because when it comes time to use/generalize those skills outside the ABA environment or in a way that isn't the format used by the child's ABA team, they can't do it. Or if they do, they end up sounding robotic. 


lucybrown, to give a little input on your question about interventions for kids with more mild presentations (and this is coming from an SLP perspective not a parent's so feel free to take it with a grain of salt) I've seen those kids do really well with individual or group speech therapy (sometimes both depending on their language/speech needs) and school based preschool programs.  Daycares frequently don't know what to do with kids that they feel have "behavior issues" and aren't willing/able to provide much in the way of extra supports in the classroom, which really sucks.

[lucybrown]

luv2rn4fun and plutosmoon , thank you. I certainly don't want to delay intervention if it's needed. I'm hopeful the school district evaluation provides more answers. My experience with them thus far has been really good.

DD is 10 and diagnosed ADHD and anxiety. She has ASD quirks, but does not fit diagnosis criteria. That adds to the confusion, honestly. Is his repeating things a sign of ASD or is it something socialized because it's how he and his sister connect? They LOVE to recite and act out stories or shows together.

I understand peer socialization is an important marker, but how do we differentiate between a shy temperament and ASD? Outside of daycare and in small group/1:1 settings, he is appropriately social. Talks to neighbors, makes friends at the park, enjoys extended family members that are calm/non-assuming personalities. He requires patience to find his words at times, but isn't awkward. The psychologist's opinion is that his peers won't wait and he would benefit from gaining social skills. I get that, but I also feel like it tiptoes into changing my child to fit the world vs. accepting him for who he is.

[luv2rn4fun]

Jul 14, 2021 13:01:38 GMT -5 lucybrown said:

luv2rn4fun and plutosmoon , thank you. I certainly don't want to delay intervention if it's needed. I'm hopeful the school district evaluation provides more answers. My experience with them thus far has been really good.

DD is 10 and diagnosed ADHD and anxiety. She has ASD quirks, but does not fit diagnosis criteria. That adds to the confusion, honestly. Is his repeating things a sign of ASD or is it something socialized because it's how he and his sister connect? They LOVE to recite and act out stories or shows together.

I understand peer socialization is an important marker, but how do we differentiate between a shy temperament and ASD? Outside of daycare and in small group/1:1 settings, he is appropriately social. Talks to neighbors, makes friends at the park, enjoys extended family members that are calm/non-assuming personalities. He requires patience to find his words at times, but isn't awkward. The psychologist's opinion is that his peers won't wait and he would benefit from gaining social skills. I get that, but I also feel like it tiptoes into changing my child to fit the world vs. accepting him for who he is.

Well, DS1 didn’t talk to Grandma/Grandpa, neighbors, peers at the park, etc…he still struggles with certain people but has also made great progress. School thinks he’s quiet and shy whereas I’m like “no, he wants to play, talk, etc…he just doesn’t have the skills or feel confident in his skills!” He’s super talkative at home and certain people but not other places and situations. It’s really what led to the ASD diagnosis vs ADHD.

ETA: DS2 is my quiet/shy kid. He does many of DS1 quirks and behaviors but I do feel it’s modeled from DS1. That’s been his only peer interaction since COVID (for the most part) and he didn’t have much preschool experience prior to COVID.

[lucybrown]

luv2rn4fun, I can't help but wonder how COVID has played a role. For a 3 year old, a third of his life has been spent mostly in isolation with 3 other anxious weirdos. Still, he's social and seeks interaction. He talks to anyone who comes by our house. The one neighbor specifically brings her cat outside to say hi to him because it brings him such joy. The other one knows that her dog Toby shares a name with a train. Last week he became BFFs with a window salesman. The kid is significantly more secure with his immediate family members nearby. IMO, the awkwardness is due to the language delay and pandemic life.

[plutosmoon]

Jul 14, 2021 13:01:38 GMT -5 lucybrown said:

luv2rn4fun and plutosmoon , thank you. I certainly don't want to delay intervention if it's needed. I'm hopeful the school district evaluation provides more answers. My experience with them thus far has been really good.

DD is 10 and diagnosed ADHD and anxiety. She has ASD quirks, but does not fit diagnosis criteria. That adds to the confusion, honestly. Is his repeating things a sign of ASD or is it something socialized because it's how he and his sister connect? They LOVE to recite and act out stories or shows together.

I understand peer socialization is an important marker, but how do we differentiate between a shy temperament and ASD? Outside of daycare and in small group/1:1 settings, he is appropriately social. Talks to neighbors, makes friends at the park, enjoys extended family members that are calm/non-assuming personalities. He requires patience to find his words at times, but isn't awkward. The psychologist's opinion is that his peers won't wait and he would benefit from gaining social skills. I get that, but I also feel like it tiptoes into changing my child to fit the world vs. accepting him for who he is.

My DD is super outgoing, she talks to anyone and everyone, it was more about how she socialized. Her behavior was different and more rigid, everything in her world is black and white, there was no gray. For example, when another child used an incorrect word for something, her immediate reaction was to lash out and tantrum or hit the other child. Her language issues caused problems too, because she didn't have the words to express what she wanted to say.

She's still her, with all her quirks, but now she at least understands others don't see the world the same way she does. She still occasionally loses it when someone uses a word wrong, or they aren't doing something the "correct" way, but she knows what kind of reactions are appropriate.

[lucybrown]

I appreciate you all humoring me and letting me vent/talk this out. There isn't much to do besides wait to see what the school district evaluation brings and go from there.

I do appreciate all the stories about mild delays and how intervention helped. It's a weird spot to be in because we don't know whether to wait and see or push for additional interventions.

[ellipses84]

I can see why you have reservations and think 3 is really young to diagnose if it is not clear or more severe. Maybe ABA isn’t the right approach for now. Maybe it’s speech, or OT, or working on his issues with you at home, or switching schools to see if that makes a difference, and re-evaluating in a year. I think your daycare seems a little extreme in what they consider developmentally on track.

I’ve honestly considered getting my 5 year old evaluated because he definitely has borderline behaviors and the past few months, he has seemed behind his peers emotionally / behaviorally for his age and been very challenging to parent with some extreme sensory reactions. He’s spent half the year out of school and half in but with Covid distancing. Both of my kids have definitely had issues related to Covid anxiety and changes this year. Part of me thinks it’s a phase he will grow out of, and he’s also made huge progress academically. 🤷‍♀️

Parenting is hard and full of tough decisions! But if you are thinking and worrying about them that means you are a great parent who is always trying to do what is best for them.

[kate1482]

My dd was diagnosed was ASD 1 at age 5. We suspected something was up before she was 18 months old. She was evaluated at 18 months and 3 years old and it was always unspecified delay. They recommended getting her around different groups of kids as much as possible. Preschool, activities, play dates etc and have another formal evaluation at 5. We did OT for sensory issues and speech during this time. We also switched preschools to give her a new environment

[krystee]

Do you really like this daycare? If you feel they are pressuring you to pursue a diagnosis when it could easily be normal behavior per your pediatrician, it might be worth trying another one or a full-time preschool. If the same concerns come up, that will be an important input into deciding how much intervention to take. And if the new daycare has no concerns, you can be pretty sure the issue was the first daycare.

[lilac05]

I don’t have time to fully respond, but personally (and likely professionally, if I actually knew your child and his presentation is as you explain it here), I probably would not consider ABA for a child who is mildly affected. It’s SO intense, and the carryover skills are questionable, especially for more complex situations.

I’m usually not at all a “wait and see” person, but if he’s already getting speech (AND you’re happy with those services) and the school is doing an evaluation, I might wait to get a further evaluation *if* he has been home a lot and is just getting back to interacting with peers on a regular basis. Talk to his SLP and see what she thinks. It makes sense that kids who were home for a good chunk of Covid are now a little behind on social skills and group interactions. On the other hand, the waiting period for a neuropsych eval can be very long, and would give him some time to readjust to life in a social setting.

[boiler717]

As someone who had multiple red flags about their day care and tried to rationalize it and make it work, I highly suggest trying a different environment and see how your son does there. I know it’s a HUGE thing to switch daycares and I really fought against it. However, every single thing dramatically improved when my son went to a more suitable daycare. It wasn’t ASD but it was health-related issues that they were gaslighting me about and not addressing seriously. I wish you guys luck and hope the other eval provides clarity.

[waverly]

You don’t seem fully onboard with ABA even if you were confident in the diagnosis. I don’t really know all that much about it, but I think if you aren’t fully onboard then you can wait on it until you have more information from the school or decline altogether.

I would 1. See what the school district says
2. Continue speech
3. Get him into OT.
4. Get out of that daycare, so you can have a childcare provider that is more objective or at least more in line with you.

Our school district busses to the 3 daycares in town as well as the park district. Is that an option for afternoon care? I never ever thought I would have a nanny due to the cost and then the pandemic hit. Anyway, she was slightly higher than 2 in daycare for 4 days a week but only when we added in elearning. So for just afternoons maybe you can find something equivalent or just a tad higher than what you are currently paying.

[magma]

My DS is 11 has walked the fine line of mild ASD and many other diagnoses and therapies ever since he was 3.

I’ll say that once they hit a certain age they may push back entirely on all therapies - my DS has, even though he really still needs speech, OT, social skills…therapists all say at a certain age if there isn’t buy-in from the kids there is really no point.

So given that, I say therapy as much as you can when they are young enough that they can’t opt out.

[luv2rn4fun]

Jul 14, 2021 20:42:20 GMT -5 magma said:

My DS is 11 has walked the fine line of mild ASD and many other diagnoses and therapies ever since he was 3.

I’ll say that once they hit a certain age they may push back entirely on all therapies - my DS has, even though he really still needs speech, OT, social skills…therapists all say at a certain age if there isn’t buy-in from the kids there is really no point.

So given that, I say therapy as much as you can when they are young enough that they can’t opt out.

Curious what age range this happens? DS1 is 6.5yo and he has really been pushing back on ABA (some with other t
OT (which is virtual) but mostly ABA). I think it mostly has to do with all the turnover (he’s had 6 therapists since COVID and this last one was ok but she couldn’t get him to do anything non- preferred and his meltdowns were way more frequent, longer, and all around worse) and just being over it but maybe there’s more to it…

[osulori]

Jul 14, 2021 21:24:39 GMT -5 luv2rn4fun said:

Jul 14, 2021 20:42:20 GMT -5 magma said:

My DS is 11 has walked the fine line of mild ASD and many other diagnoses and therapies ever since he was 3.

I’ll say that once they hit a certain age they may push back entirely on all therapies - my DS has, even though he really still needs speech, OT, social skills…therapists all say at a certain age if there isn’t buy-in from the kids there is really no point.

So given that, I say therapy as much as you can when they are young enough that they can’t opt out.

Curious what age range this happens? DS1 is 6.5yo and he has really been pushing back on ABA (some with other t
OT (which is virtual) but mostly ABA). I think it mostly has to do with all the turnover (he’s had 6 therapists since COVID and this last one was ok but she couldn’t get him to do anything non- preferred and his meltdowns were way more frequent, longer, and all around worse) and just being over it but maybe there’s more to it…

I've seen this happen with kids of any age but most frequently elementary age (6ish) and up.  Sometimes we'll have kids take a break from therapy/therapies for a bit and come back to it because they just need that mental break.

[rebneen]

lucybrown you are doing awesome.

I think “if it walks like a duck and quacks like a duck” it doesn’t matter what you call it. ASD, Mild ASD, SPD, whatever.

My route was Pedi>Private OT/ST>Dev Ped>School testing >school based services

The Dev Ped was expensive. But it really identified his domains of weakness so that we could go into academic testing with some expectations of what we would see.

My son is mild (2 on a scale of 1-10), academic testing shows no other issues (yet) but I expect dysgraphia. He’s definitely on the spectrum, but with our continuum of services and school supports, he has, he can be in any mainstream social situation I’ve put him in (Scouts, camps, daycare for vacation, play dates, etc). He’s still learning, but has made amazing strides just being around typical peers and getting academic-based services.

I found the Dev Ped amazing and when we spoke about services she said ABA is currently not recommended for children who are mild. Since you have been involved with it in the past, I won’t wholesale condemn it, but many adults with ASD report that it was traumatic and it seems like it is rarely properly implemented so she rarely recommends it. And she isn’t some hippie progressive.

[lucybrown]

Thank you all for the input and support. An update: the district meeting went well. I felt so seen and heard. We are meeting next week after they have a chance to score everything, but based on yesterday's meeting, they don't see any needs that are major red flags. He functioned much better and was really comfortable with everyone. The district also said that they're seeing so many social and language delays due to pandemic life and they're using more caution in diagnosing things right now. Two people on the team know our family from working with DD's 504 plan. It just felt much better all around and like a better evaluation of DS's daily functioning and skills.

Ultimately, it comes down to trust. We have valid reasons to be skeptical of both daycare and the ABA psychologist. History has taught us that we can trust our intuition about our kids, our pediatrician, and the school district support team. At this time, we feel that OT and speech therapy are good ideas. We're okay watching and waiting on the other behaviors.

We also need to get out of his daycare ASAP. If we move him to another center and they express similar concerns, we will move quickly. If not, it proves it was a daycare issue, not a DS issue. boiler717 , hit the nail on the head. We've been rationalizing and trying to make it work for too long. It's time to move on. I may pay the fee to hold his spot while we explore, just to make it feel less risky. As much as I'd love to set it on fire, I don't burn bridges. I'll keep the door open if only to reduce my own anxiety.

rebneen , you've made these points before and they've stuck with me. DS is who he is, regardless of what we call it. We're not resistant to the ASD diagnosis if it fits. Right now, there is as much evidence against as supporting it. The cusp is a weird place to sit. We want a more comprehensive evaluation instead of ones that solely look for ASD. We did a neuropsych eval for DD at 8 and it was really helpful in providing more information about her strengths and weaknesses. It also gave a ton of useful suggestions, which is really what we're after with DS.

If he does not qualify for the district's 3K program through his IEP, we have the option of paying for the program through the recreation department. This sounds like the best option for him. It's as comprehensive or more than other preschool options in the area. 16 kids per class, maybe 4-5 with IEPs, one special education/ECE teacher, and at least 2 more teachers or paras. The teacher:child ratio will be 1:4-5. Daycare ratio is currently 1:10 with over 100 kids in the center and rotating teachers. Transportation may be a minor issue, as we just found out H is working from home permanently. He's a busy body and seems excited about an excuse to leave his desk midday.

Thanks again! I have to talk these things out and all of your input has been so helpful. If not for the boards, we would not have recognized his language delays.


ETA: Proboards ate part of my post.  I think it was something like this:

We very much embrace neurodiversity.  Masking is exhausting and we have no desire to teach our children how to do more than necessary to function in the world.  H and I agree that both daycare and the ABA psychologist seemed pushy about teaching our child to fit in with whatever their version of normal is.  The square peg in a round hole analogy fits well.  Our kids have sensory quirks, but they are extremely bright, sensitive, inquisitive, and see the world slightly differently than most.  It's amazing and I have little desire to change those things.  We love them, quirks and all.  Although, I could do without the constant touching.  That gets old fast.   DS is mostly functioning just fine outside of daycare.  We want to ensure we're giving them tools necessary to manage a sometimes overwhelming world. 

While I have professional experience with ABA, I have also read and listened to the criticisms.  They're valid and worth considering.  It can be poorly executed and traumatic for some.  It can be amazing for others.  I think every person has the right to weigh pros and cons to determine what is best for them. 

[lessel]

I'm so glad the meeting went well and you guys feel like you have way ahead. I think you're right on with your plan for next steps.