Autism support levels, especially level 2

[PeterPan]

Anybody know anything about this beyond what is written in the DSM? Like what does ASD2 support level actually look like in a high IQ individual?

 

I read something on another forum where they suggested ASD1 kids were the ones who could go a lifetime without diagnosis, live independently, get a job, have friends, etc, and that ASD would struggle to do those things without support. The latter is my ds. But when you look at the DSM, it gives such trite answers like will use short sentences and you're like really?? So is there diversity? If you have an ASD level 2 support dc with an average or above average IQ, what does he look like? How does he function? What kind of support does he need in order to function and do his school work and attend social events?

 

And conversely, if your dc is average or above average IQ and ASD support level 1, what support do they require in order to function? 

 

-in life--doing chores, routines, making a snack, brushing their teeth, etc.

-in social--going to Sunday School or scouts or some situation that requires behavioral control and compliance

-in school work--ability to do typical curriculum or needing supports/modifications way outside the norm, not because of the giftedness but because you're trying to keep them calm or not overwhelmed or able to understand the language

-in language--do they have funky language holes in spite of seemingly good language? 

 

My ds really functions at the "Drives Mom to Drink" support, not the "I'm Going for the Flyswatter because You're Bugging Me" level. But is ASD1 homogenously Flyswatter level (or maybe Indiana Jones, need to crack the whip and keep control) level? Are some moms with ASD support level 1 kids really at the Driving Me to Drink level, and they just don't talk about it? Or is it generally recognized that it should be Flyswatter level?

 

These discussions are so hard, because the school system, etc. just went well, he's that way and hard because YOU are ineffective, blah blah. No, actually, I'm pretty effective. I just know how hard I'm having to work at it, and it's stressful. I'm constantly having to think three steps ahead how to handle him, how to manage him, how to make sure he keeps on the complying bandwagon, how to get him to do things I need him to do. I'm constantly on call, on guard. Even transitions, so vague in the DSM. And they're not really homogenous. On really bad days, he needs LOTS of supports to transition. He can't just do his school work. It will be like sucked into his app or play, and we're gonna set a timer for 5 minutes and then he'll transition and work with me 2 minutes and then go back to his play. Some days that's all he can handle, and we do that, back and forth, till we get him there. It works and he snaps back and gets faster each day, but he really needs support like that, just to be able to say ok, I can engage with you and not flip out.

 

Honestly, I never read about moms here with ASD level 1 support kids needing THAT LEVEL of support. So can you just tell me more and spit it out? What does 1 vs. 2 really look like in your home? We're going to get fresh evals, but it's kinda driving me insane.

Edited January 17, 2018 by PeterPan

[PeterPan]

So I'll just answer for my ds.

 

-in life--He can do chores he has been taught when prompted. We don't have him using a list (our bad), but he will do them with a prompt. He cannot solve a problem, like spilling water and needing a towel. I actually have to prompt him and say what do you need, point at the drawer, finally tell him to get a towel, then go over and help him wipe it up. This happened yesterday. Anything where we've taught the sequence enough, he can try to do it, but he can't problem solve once into it. Like if he has two objects in his hands and needs to open a door, he's screwed. He gets all frustrated and has to be prompted to solve his problem and helped to figure out a solution (set something down, go back to the table and set one thing down, etc.). He is ineffective at brushing his teeth. He requires significant supports to learn basic things, like right now I'm teaching him to pick up his laundry, turn the pants and sleeves out the right way, and hand it to me to put in the laundry. I have him hand it to me, because it shortens the steps and seems to calm him. He's 9 and gifted but I can't say he pick up your clothes and expect him to do this correctly. 

-in social--He's not going to notice names of anyone in the group without assistance. He's actually pretty friendly and even outgoing, if he decides to notice you exist.

-in school work--We use printable ebooks so that I can give him one page at a time and not have him be overwhelmed. Basically he requires the work as compliance drills to keep his brain connected and checked. Open-ended work is much harder for him to self-regulate. He does better with highly predictable, consistent format work. He doesn't do anything that looks like typical homeschooling curriculum. We spend a lot of time playing games, listening to audiobooks, and doing hands-on (sometimes with a kit, sometimes with our worksheets). So our worksheet might say to measure lots of things to find one pound of them. But just to give him Singapore or Math Mammoth or something, fat chance. I'm constantly having to chunk things to keep them small, predictable, calm.

-in language--extremely high vocabulary, now more original speech, but he has these funky holes like not knowing the names of the rooms in our house. So he can't answer an open-ended wh- question like "Where is your kindle?" because he literally doesn't know the names of the rooms to say "It's on the couch in the living room." But that doesn't fit the exact language deficits they're describing in the DSM under level 2 supports. That picture is different, and yet I'm really hard-pressed to say oh yeah lots of people on the boards are saying their ASD1 kids can't say "My kindle is on the couch in the living room" kwim? I just kinda took it that lots of people here have ASD1 kids who CAN do school work, who HAVE the language, who don't have these kind of funky, glaring, actually really getting in the way of life, kind of holes popping up all the time. Or do you and just nobody says it because nobody asks?

 

 

 

[OneStepAtATime]

I have no answers for you hon, but I did want to say that anyone who spouts off that you are ineffective and that is why he is such a challenge are full of it and deserve a quick kick in the patootie.  You have for YEARS searched out ways to help him and spent hours daily helping him and have WORKED at this ALL.THE.TIME.  You have done more than any professional could have.  So a pox on ignorant idiot professionals and their sorry uninformed judgemental opinions.  

 

 

...I really am sorry I don't have answers for you...

Edited January 18, 2018 by OneStepAtATime

[Innisfree]

PeterPan, I really don't have much help to offer either, but can say that dd has been given both level 2 (first diagnosis), level 1(consultation with dev ped), and then level 2 again (by psychiatrist who works in same hospital as dev ped).

 

I personally find the criteria less than clear and helpful. Dd's behavior varies *so much* depending on the situation and the people around her. Frequently she looks more socially competent than older dd who thus far hasn't gotten anything more than an anxiety diagnosis. Younger dd can be smiling, laughing, interacting appropriately with the cashier at the store, while older dd won't look them in the eye or go grab something I forgot, but younger dd has the ASD diagnosis. Go figure. But when she's overwhelmed, younger dd's behaviors are in a different universe, and I guess that makes the difference.

 

I'm not sure I put a huge amount of stock in any one evaluation of 1vs 2, at this stage. It's a spectrum, right? And each aspect of coping is on its own spectrum, too.

 

Agreeing with OneStep on the professional who apparently was very unhelpful.

[Crimson Wife]

I suspect my daughter if diagnosed under the new DSM would be level 2. Her diagnosis under the previous DSM was HFA, moderate impairment. HFA because of the underlying high non-verbal IQ. Autism rather than Asperger's because of the speech & language delay. Moderate impairment because that's the most accurate description of her functioning level.

 

My understanding of level 1 is that it's all the kids who would have previously received a diagnosis of Asperger's or PDD-NOS but no longer can because the DSM did away with them. My sorority sister has a 5 y.o. with ASD L1 and he's the classic Aspie. Definitely way higher-functioning than my DD. He's attending a mainstream K with some supports but nothing too intensive.

 

My child would completely flounder in a mainstream class. Now she is doing a lot better than many of the kids she went to preschool with, which is why she moved up to the class for language-based LD's rather than remaining in the autism class. I don't know if those kids would be considered level 3 vs. just the lower end of level 2.

 

Honestly, I think the whole DSM revision was a mistake. If I say "Asperger's" or "HFA, moderate impairment" or "LFA, severe impairment", then you know roughly what to expect. Much more so than ASD L1, L2, and L3.

[PeterPan]

PeterPan, I really don't have much help to offer either, but can say that dd has been given both level 2 (first diagnosis), level 1(consultation with dev ped), and then level 2 again (by psychiatrist who works in same hospital as dev ped).

 

I personally find the criteria less than clear and helpful. Dd's behavior varies *so much* depending on the situation and the people around her. Frequently she looks more socially competent than older dd who thus far hasn't gotten anything more than an anxiety diagnosis. Younger dd can be smiling, laughing, interacting appropriately with the cashier at the store, while older dd won't look them in the eye or go grab something I forgot, but younger dd has the ASD diagnosis. Go figure. But when she's overwhelmed, younger dd's behaviors are in a different universe, and I guess that makes the difference.

 

I'm not sure I put a huge amount of stock in any one evaluation of 1vs 2, at this stage. It's a spectrum, right? And each aspect of coping is on its own spectrum, too.

 

Oh my. I had no clue there was so much vagueness about it.

[PeterPan]

Yes, we went back and got the language delay diagnosis, and the school didn't want to acknowledge it or deal with it. I think that's where this fresh psych eval comes in, trying to pull those pieces together and acknowledge current support.

 

No, he could not mainstream. Even on his best days, super best, he could not mainstream. He would have to have an aid and so many pullouts, and he would be exhausted from it. It's a lot of commotion for him and not the life he lives.

[Lawyer&Mom]

As a high IQ Aspie, I sometimes think we need an autism support level 0.5. Like I have a job and a checking account and everything, but when I’m overwhelmed I get flappy and non-verbal. Sometimes my husband needs to tell me what to wear or what to eat for lunch. But I have a husband. And friends. And coworkers who don’t know I’m autistic. (But I really am.) The current three-tiered system doesn’t seem like it has a place for me. And moving me to 0.5 would create more room in level 1 for still high functioning but more impaired people.

[prairiewindmomma]

My friends with level 2 kids all have them in school because they need the break to cope with parenting and homework after school (and most of them also have support staff coming in after school also).

 

In school, they have dedicated 1:1 support people + a ton of specialists that roll in. One is nearly fully mainstreamed, but hitting walls (uh, literally and academically) in 8th grade. He needs breaks in the resource room to chill out, and occasionally is sent home from school for behavior. He is struggling with transitioning to higher level work for reasons other than IQ (visual processing in math, language pragmatic, etc.).

 

You are correct, Level 2 behaviors are completely different from level 1 ones by magnitude of order.

[OneStepAtATime]

As a high IQ Aspie, I sometimes think we need an autism support level 0.5. Like I have a job and a checking account and everything, but when I’m overwhelmed I get flappy and non-verbal. Sometimes my husband needs to tell me what to wear or what to eat for lunch. But I have a husband. And friends. And coworkers who don’t know I’m autistic. (But I really am.) The current three-tiered system doesn’t seem like it has a place for me. And moving me to 0.5 would create more room in level 1 for still high functioning but more impaired people.

Nuance.  There needs to be more nuance.  The brain is just not as cut and dry as the DSM is trying to make it.  Your suggestion makes sense to me since they want some sort of quantifiable system recommendation scale but seriously this is just so much more complex than they make it out to be.

 

And thanks for sharing.  

[PeterPan]

My friends with level 2 kids all have them in school because they need the break to cope with parenting and homework after school (and most of them also have support staff coming in after school also).

 

In school, they have dedicated 1:1 support people + a ton of specialists that roll in. One is nearly fully mainstreamed, but hitting walls (uh, literally and academically) in 8th grade. He needs breaks in the resource room to chill out, and occasionally is sent home from school for behavior. He is struggling with transitioning to higher level work for reasons other than IQ (visual processing in math, language pragmatic, etc.).

 

You are correct, Level 2 behaviors are completely different from level 1 ones by magnitude of order.

 

This is close to what the behaviorist wants us to have. She has found extra people, but they bill so high under the way our current scholarship works that we can't afford them. But she wants us to have that and he would eat it up, yes. And yes *I* think that kind of placement would work for him in school. Ok, that's wishful thinking. I'd LIKE that kind of placement to work for him at some point. We'll have his IEP renewal stuff in a few months, and that's something I want to update and get reflecting his current status. I mean, it sounds really pissy to say that as a homeschooler I want it RIGHT, but it actually matters to me what that stupid paper says. There are a lot of people that see that IEP and it opens and closes doors for me and causes people to draw assumptions. 

 

I don't know how I hadn't caught that it was the old autism vs. aspergers thing. I haven't really gone into those terms much, because we weren't diagnosed that way. And really, when people used to meet him (before the last year or so), they really wanted to kind of think the best, which basically meant assume that really functional aspergers profile, someone who could mainstream, someone who would turn out well. But if you look at his language delays, I don't know that it fits that. I mean, it's sort of contradictory to say aspergers and then say btw language delay, hello. 

 

He's not AS MUCH support as some people I know with level 2 kids. Like I met a woman in real life, and I *think* maybe her ds is diagnosed support level 2. I assume 2, not 3. And my ds has so much more speech coming out of his mouth all that time (thank you $10k of speech therapy a year), that people just don't expect that.

 

So I don't know. But the supports, the wearing people out, the issues are actually very similar, the intensity is similar. 

Edited January 17, 2018 by PeterPan

[wendyroo]

Peter (8, almost 9) is diagnosed as Level 1.  Sometimes, like when he is independently plowing through AOPS prealgebra, that seems pretty accurate.  Other times, like when the gym coach asks him if he wants the first turn, and Peter doesn't say yes...or no...but rather just stares at him for an uncomfortable length of time and then turns and wanders away, I wonder if what looked like Level 1 at age 5 might not look more like Level 2 at age 8.75.

 

-in life--

He can do simple chores if they are broken down into itty-bitty, explicitly explained steps.  Like, I have to spell out that he should throw away the baby wipe after using it to wipe down the bathroom, otherwise he will just leave it on the counter.  He will ALWAYS put in as little effort as possible.  He does not have the forethought or self-control to do a good job, even if he intellectually knows that I will be checking his work and making him redo it if it is not done well.  He can "make" a snack for himself and his siblings if it only involves opening packages (cheese sticks, raisins, rice cakes, etc.).  Even that requires that I spell out the steps in detail right before leaving him to it.  He cannot make a sandwich, adequately brush his teeth or clean himself in the shower, solve everyday problems or make decisions, independently follow routines (ie get ready to go to gym).  He also absolutely cannot resist temptation.  When a paperclip accidentally got left in his room, he used it to carve designs in his window frame.  When we visited the in-law's a couple months ago, he drew all over the bedroom in permanent marker, climbed the closet shelves until they collapsed, pulled the stuffing out of the comforter and shoved it down the air vent, etc. - all of that between when he woke up and when he decided to come downstairs.

 

-in social--

He gets by, but his "quirks" are readily apparent to everyone involved.  He doesn't know names, but I have found that to be fairly typical of boys his age.  Bigger flags are not engaging when spoken to, often incessantly interrupting to ask for insane levels of clarification ("But what about if the person we tag starts walking to the side, but then falls and sprains their ankle?  Should we tag them again?"), and opting out of many class activities that the rest of the children are enjoying.  He intellectually knows how to be polite when he wants something, so he can often talk his way out of compliance with unfavored tasks. 

 

-in school work--

He struggles with handwriting, so I often have to modify curriculum to reduce writing.  He also really struggles with comprehension.  Fact based retention, like in WWE, are easy, but ask him why someone in SOTW is angry or disappointed, and he is lost even though the answer should be obvious.  He does much better with a rigid routine, so I always choose curricula that follow a set pattern and have discrete lessons.

 

-in language--

His language has never been strong.  He communicated very little in any way until he was 2.5, and even then he had almost no words.  He was in speech therapy (for expressive language only, and primarily articulation) until he was 6.5.  His affect is still...wrong.  He really struggles with verbal motor planning, and this is clearly seen when he tries to pronounce new Spanish vocab words.  Even in English, his speech isn't properly paced or accented.  

[PeterPan]

Wendy, thank you, that was incredibly helpful. So how does he do with transitions? Does he have days or times when he's really struggling, really stuck on a perseverative interest, and having a hard time getting into the routine and complying? Or does he transition well and not have stuck days or times like that?

[Crimson Wife]

I also think some of what you're seeing behaviorally is due to the fact he didn't get a diagnosis and start ABA until he was already elementary aged. If he'd gotten behavioral-based intervention (Early Start Denver preschool) starting at 27 months and then 15-20 hours per week 1:1 ABA from age 5 like my daughter did, where would he be now at age 9? We're coming up on our 4th anniversary of ABA in April. So if she's able to behave ok at social events like her cousin's Christening this past weekend, it's after YEARS of intervention to get her to that point.

 

At this point what the ABA team is working on with her are things like self-help skills (tying shoes, brushing teeth, brushing hair, etc.), language, reading, and social interaction. It's not so much compliance and emotional regulation at the point, whereas those were big issues when she first started.

 

Does she have bad days? Yep. Christmas was awful when she got overstimulated and then deliberately dumped two nearly full bottles of soda out including all over the living room carpet. But the days where she makes me want to lock her in her room while I go down a margarita are fortunately few and far between at this point. What I find exhausting is dealing with the neverending red tape and shuttling her around from one appointment to the next.

[wendyroo]

Wendy, thank you, that was incredibly helpful. So how does he do with transitions? Does he have days or times when he's really struggling, really stuck on a perseverative interest, and having a hard time getting into the routine and complying? Or does he transition well and not have stuck days or times like that?

 

Oh, yes.

 

Independent transitions (finishing one task and independently moving on to the next) just don't happen at all.  Ironically, at this point, it would even be an improvement for him to finish something and sneak off to a preferred task.  Instead, he will finish one thing and then be completely at loose ends.  For example, he will finish math, after which he always gets free time, but he would never move on independently.  Normally, he won't even think to ask me what he should do next.  Instead he will just continue to sit at the table tearing his math book into shreds, writing on the table, climbing onto the table and rotating in circles on his belly, etc. until I notice that he is done and prompt him to move on to free time.

 

Scaffolded transitions are getting better, but still require prompting for each step.  When he finishes handwriting, then I need to prompt him to look at his daily schedule (even though it has been the same for two years now).  He sees the next subject is reading, but I again need to prompt him to get his book from the bin.  Then he will just stand there holding it until I prompt him to decide where he is going to sit and read.

 

A new development has been responding to transition alarms.  He wanted to try setting his alarm clock in the morning, and for a month now he has successfully gotten up and gotten dressed when the alarm sounds.  Once he is dressed, all bets are off, and I have to step in and prompt him that handwriting is always his first subject of the day.

 

He does perseverate, but he doesn't really have perseverative interests.  For example, yesterday, during history, I said, "Okay, it's map time." just like I do every day.  He responded by fake snoring and asking, "Nap time!?!?".  He then laughed uproariously at his own joke.  Whatever.  But then, a minute later he did the fake snoring, "Nap time?!?!" and laughing again out of the blue.  And again a couple minutes later.  He knew it didn't make sense anymore, he knew that it was annoying people, but he just couldn't stop.  He even did it a couple times during his outsourced, group Spanish class which was very disruptive and inappropriate.  This morning I held my breath for hours dreading that he was going to start it up again.  I actually consciously avoided using the word map during history because I worried that hearing that word would set off that mis-wiring in his brain again.

 

He also has a weird throat clearing habit that seems to fall somewhere between a tic and a stim.  It ebbs and fades, and he does have minimal control over it for short periods, but it has been lingering for over a year now.  There have been many days, weeks, and even months when I did not feel I could take him to the library because he was loudly clearing his throat every ~30 seconds.  The pediatrician actually said that his throat looked painfully red and raw due to the habit...and yet still it persisted.   :sad:

 

Wendy

[PeterPan]

I also think some of what you're seeing behaviorally is due to the fact he didn't get a diagnosis and start ABA until he was already elementary aged. If he'd gotten behavioral-based intervention (Early Start Denver preschool) starting at 27 months and then 15-20 hours per week 1:1 ABA from age 5 like my daughter did, where would he be now at age 9? 

 

You're really onto something there. It's not like we were completely without intervention. We've had 10s of thousands of hours and dollars of speech therapy. Like really, we've spent close to $10k a year on speech therapy since he was 2, and it show. 7 years of that really makes a difference, bumps connection, etc. But it wasn't ABA. 

 

Our access to ABA changed and now we have to use $100 an hour people instead of $20 an hour to qualify under our scholarship. If we can change scholarships, that would change. So at $100, we're out of money. But yeah, from where we were 2 years ago to now, huge huge change, much much better. And I think that average stint is 3-4 years, yes? He's still responding and blossoming, I would say. 

 

So I don't know what of that would improve and what is just what it is. That's a really good way of examining it. I guess that's the crux of it. And again, it's not so much what could be what IS be. I need a support level for NOW that gets me better access NOW. So we'll see.

 

And yeah, when you look at HappySmiley's situation, we look like we're whining, But my ds still has deficits relative to himself. We just happen to have put so much $$$$$$ into speech (2 hours a week for 7 years, sometimes 4 hours a week, seriously), that it's more like funky holes rather than blatantly obvious stuff. But it makes sense why people would say hey why should we qualify you under language, since compared to that my ds is quite functional.

[Pawz4me]

DS19 is 2e, with an ASD-1 diagnosis ("requiring support in the areas of social communication and restricted, repetitive behaviors"). Since he's older I don't know if this will be of much help to you, but here goes --

 

In life--He can do everything that he needs to do as far as activities of daily living, and picked up on all those skills not much later than a NT child would have. But he will do as little as possible. For him preparing a meal is never more complicated than a sandwich or putting a frozen dinner in the microwave. He probably could learn to cook simple meals (an omelet, grilling a chicken breast, etc.) but I think learning the sequencing of cooking even simple things is something he's just not interested in making the effort to learn. He keeps his hair buzzed short because he doesn't want to have to fool with combing or styling and will go as long as possible between shaving. He's very routine oriented. Once he gets a routine worked out that works for him he'll absolutely stick to it. He does the same things the same way at the same time every day. As long as things are going along as expected he's fine. If something different or unexpected happens it can take him considerably longer to figure out how to handle it than it probably would take most NTs.

 

Socially--Once past four or five he had no problem with behavior control. Quite the opposite--he's very self contained, to the point that many would likely describe him as aloof or at least very reserved. When younger and (for example) playing a team sport--an activity that he thoroughly enjoyed--he would speak when spoken to/answer any questions he was directly asked but he never that I recall ever initiated conversations. Now he gets along quite well with peers, understands that at least some level of conversation is expected and that it requires a joint effort to keep a conversation going. But he'll never be good at small talk or idle chit chat. He simply doesn't get that. He still misses a lot of body language and other nonverbal information, which sometimes creates awkwardness in social interactions.

 

School work--Has never been a problem other than he struggles with creative writing. He's very much all about fact based learning. Now that he's in college he does use a smart pen. Perceptual reasoning is one of his weakest areas. Handwriting is affected, and looking up at a professor or board and then looking back down at paper and pen and writing is a struggle. The smart pen really helps alleviate that.

 

Language--Has trouble precisely and succinctly describing events. As far as speech--intonation and prosody are atypical.

 

FWIW, two of the things you describe (having to walk your DS through the sequence of getting a towel and wiping up water and having to instruct him to set one item down when his hands were full so he could open a door) -- I can absolutely relate to those. Those are exactly the kinds of things we had to actively teach DS19 when he was younger that we didn't have to actively teach his NT older brother. But we usually only had to walk DS19 through those things one time. Once they were explained, he understood and retained.

[PeterPan]

Wendy, that's really interesting. Snow's book talks about the neurology behind needing the prompts for transitions. It was interesting when I read it. 

 

My ds has perseverative interests and gets sucked into them, so then you're competing with his own mental world he's in. It's kind of tricky, and the main thing is to stay ahead of him and remind him of the plan and not have him go there. So if he's working on layouts for military battles (one of his big things right now), he's going to be really into it and have them all over the house. And when he's into it, arranging the men just so, he has to have a lot of help to transition and be ok with that. So then we're going through the whole this is the plan, let's take 5 minutes for your break to work on that and THEN we will do this work, then when your work is done you can have another break for 5 minutes to work on it, etc.

 

You know the other funky thing, come to think of it? I kind of vaguely get the impression that ASD1 shouldn't need ABA to function and comply and be on the path. Is that the case? It can't be the case, and yet it sorta seems like the case that a lot of ASD1 kids never get a stitch of ABA and are fine with typical "nice parenting" levels of support, yes? No?

[PeterPan]

Pawz, that is really interesting and I feel like I got a really good picture of your boy! So as far as level of parenting or instruction or support, was typical parenting (praise, get on eye level, be clear, blah blah) enough, or did you have to search through books, consult with behaviorists, or do other things to bring in an extra level of support and terminology and instruction?

 

What's funny is that my ds is actually somewhat socially motivated, but the skill levels definitely are similar and the reserve is there. Very interesting. And it has been showing up more as life has gotten harder.

[Pawz4me]

Pawz, that is really interesting and I feel like I got a really good picture of your boy! So as far as level of parenting or instruction or support, was typical parenting (praise, get on eye level, be clear, blah blah) enough, or did you have to search through books, consult with behaviorists, or do other things to bring in an extra level of support and terminology and instruction?

 

What's funny is that my ds is actually somewhat socially motivated, but the skill levels definitely are similar and the reserve is there. Very interesting. And it has been showing up more as life has gotten harder.

Lots and lots of typical parenting.

 

He had about three years of speech therapy (mainly for apraxia) and about two years of OT for fine motor and sensory issues. No ABA.

[wendyroo]

You know the other funky thing, come to think of it? I kind of vaguely get the impression that ASD1 shouldn't need ABA to function and comply and be on the path. Is that the case? It can't be the case, and yet it sorta seems like the case that a lot of ASD1 kids never get a stitch of ABA and are fine with typical "nice parenting" levels of support, yes? No?

 

I have no clue about anyone else's experience, but here ABA is simply out of our reach.  A couple posts up you mentioned a scholarship; we don't get any support (monetary or otherwise) from any level of government...well, except for his access pass to the National Parks, but that doesn't help much on a day to day basis.  I think ABA would help Peter, and his psychiatrist agrees, but it is simply not an option.  Those types of services are so expensive here, that I cannot even find any providers who work in homes with outpatient cases.  A local college did start offering a social skills class last semester (I had never been able to find one anywhere around), but even that is very expensive (especially considering it is taught by grad students), so they are struggling to find enough participants to continue the class.

 

I feel that Peter would sink with "normal" parenting.  I see the lackadaisical way most people parent, and, honestly, he would not have survived this long with that little consistency or supervision.  It takes 4 medications and a precise, intricate routine to help him fall asleep every night.  Every aspect of his life takes scrupulous work, planning, and perseverance.  I virtually have the executive function skills of Martha Stewart, and it still takes all of my brain power to stay on top of Peter and his needs.

 

Obviously, Peter does not need ABA.  He is currently thriving without it.  OTOH, I have two engineering degrees from MIT, extensive teaching experience and years of self-study in the fields of psychology, child development and developmental disorders.  I've also now had almost 7 years' worth of interactions and discussions with speech pathologists and 6 years' worth with psychiatrists.  I'm sure somebody trained in ABA would be able to offer us valuable advice and insights, but lacking that, I think I am the next best thing, and certainly offering him a lot more support than a "typical" parent.

 

Wendy

[PeterPan]

Thanks ladies. This has been quite helpful. Can I rabbit trail a second and ask Wendy (or anyone) if you've gone through genetic testing? I'm in the weeds tonight with going through this stuff. I got results for ds from 23andme.com and ran them through the free service here NRI - KnowYourGenetics.com which is kicking out precise genes to look at in the methylation process. That's this practitioner's gig, but it's a place to start. At least I'm finally seeing genes that, when you google them, give actual explanations to fit what we *think* we're seeing and treating. So like the aggression we theorized was overmethylation, and here's this VDR Taq gene, which actually is vitamin D receptor (go figure) that, because it's defective, isn't sucking up the methyls in the B12 process, leading to overmethylation. Boom. 

 

So I'm still digging in here. It sort of connects in the sense that the discussion is support but the question is whether the support is required because of the *autism* or something *else*. So I don't know, just blowing my brain going through genetics stuff. I figured Wendy has more brain power than I have, so she might get into it, lol. For $79, I'm at least finding something. I'm hoping I can convert it to something useful. These practitioners kick out huge, unreasonable lists, but I think some of it could actually be easy fixes, not as expensive as they're making it. Like the niacin, hello that was a $4 solution. And it looks like he should be on D, boom, very inexpensive. 

 

And yes, the state disability scholarship system drives availability. Practitioners are willing to come in and set up services when they know there's a market and going to be $$. 

[Crimson Wife]

 You know the other funky thing, come to think of it? I kind of vaguely get the impression that ASD1 shouldn't need ABA to function and comply and be on the path. Is that the case? It can't be the case, and yet it sorta seems like the case that a lot of ASD1 kids never get a stitch of ABA and are fine with typical "nice parenting" levels of support, yes? No?

 

That's not true. There are definitely some kids at my DD's ABA center who are classic Aspie's. I think my sorority sister's L1 DS has done ABA in the past (not sure if they've continued it now that he's in K).

 

The big issue with ABA is that the deductibles and co-pays are so expensive if the child doesn't qualify for the Medicaid waiver as secondary. I don't think most L1 kids would qualify for the waiver so their parents would be the ones having to pay thousands of dollars per year. A lot more parents probably would like to have their kids do ABA than actually have their kids receive it due to the cost barrier.

[Innisfree]

The big issue with ABA is that the deductibles and co-pays are so expensive if the child doesn't qualify for the Medicaid waiver as secondary. I don't think most L1 kids would qualify for the waiver so their parents would be the ones having to pay thousands of dollars per year. A lot more parents probably would like to have their kids do ABA than actually have their kids receive it due to the cost barrier.

This is spot on.

 

One can argue over whether dd13 should be level 1 or 2, but we cannot get any ABA at all now without paying for it privately. It is available in our area, but costs in the neighborhood of $100/hr for any help, not just a qualified BCBA. Combine that with the agencies' stipulation that they will not provide less than five hours per week because they feel it will not be effective, and we end up with $2,000/month minimum cost. $2000 x12 = $24,000. See how many years of that most families can swing.

 

We squeezed a few months of that out of our budget, and then the agency, realizing there were serious safety issues involved, helped us get into a county program that provided a year+ of ABA. Once the safety issues were resolved, though, that help stopped. So no more ABA, though we could certainly put it to good use.

 

We were turned down for a waiver *before the safety issues were addressed* and *with a level 2 diagnosis*. It is seriously next to impossible to get a waiver here.

Edited January 18, 2018 by Innisfree

[Innisfree]

OP, I didn't answer your original question because I missed that you were interested not just in above-average IQ, but average as well. Dd13 is in the low-end-of-average range. She also is in the "resistant social communicators" group described by Social Thinking's Michelle Garcia Winner.

 

--Please don't quote, I may delete this post--

 

In life, she generally functions pretty well. She can, at age 13, follow simple directions on a box or in a cookbook to prepare food like jello or a simple cake. She has, within the last year, grudgingly recognized to need to have clean hair in public, but may not follow through if she's in a bad mood. She has handled brushing her teeth well for years now, after having major sensory issues with it as a small child. She knows the neighborhood well, and usually shows good judgement about risks (still not always great if she's upset). She is learning to do laundry, and sometimes remembers to check about clean clothes the day before she'll need them. but still leaves her dirty clothes on her floor. She is usually very low-energy. Lots of jobs just seem to need more energy than she can muster, so things like the clothes become a low priority. She has regular chores, but she is still reluctant to do them without having something she considers a reward afterwards. Without the reward, she gets ornery and compliance gets dicey. Her frustration tolerance is still fairly poor. When frustrated, she may either shut down (mostly) or lash out.

 

In social skills, she varies widely based on circumstance. At a preferred activity, she looks almost neurotypical. Occasionally she misses directions which others in the group catch. She can be socially appropriate, smiling, making eye contact, and friendly (not seeking contact, but appropriately responsive) as long as anxiety doesn't undermine her, in which case she becomes hostile and angry. She does not notice, remember, or care about names, except names of animals. Those she knows and uses.;-) In classes, even ones she isn't really interested in, she is well-behaved. When she was small and still in school, her meltdowns came once she was home. Teachers couldn't believe there were issues then, and she gets along well with her present co-op teachers now. She is not interested in developing friendships with classmates. She tends to make a decision about people once and then be unwilling to alter it. So, boys who have teased her in the past are seen as lifelong enemies. She is actively rude to them if she is not under direct supervision, and does not accept that this makes her equally culpable. She shows no interest at all in "going along to get along."

 

In school work, she is slow to learn. She needs lots of repetition, lots of manipulatives. But if she's interested (animals), she'll seek out information, learn it and remember it. Reading was not easy. She was evaluated for dyslexia and judged not to have it, but still has trouble with long, unfamiliar words and with spelling. Still, she loves to read, though she prefers Harry Potter or Rick Riordan-type action books to anything slower-paced. Analytical thinking is very weak. She has trouble completing what I think should be an appropriate amount of any sort of work, because if something seems hard she shuts down and is done.

 

Language: she used to have real problems with any sort of directionality: left/right, yesterday/tomorrow. Her intonation is unusual. She still has difficulty choosing "a" or "an" before a noun, despite much explicit instruction. Like many things, she thinks it's silly and doesn't care.

 

--Again, please don't quote.--

Edited January 18, 2018 by Innisfree

[PeterPan]

Innisfree, that's really interesting, and I agree the complexity makes it hard to say oh yeah she fits tidily into level 1 or 2 support, and yet she clearly, clearly is having challenges. It was really interesting to see how those are showing up in her life and some of the contradictions (surviving at school, struggling at home), etc. On the low energy, have you looked into methylation issues. They're saying a high percentage (98%?) of kids with autism are undermethylators. I think that could be presumptive and overblown, but it's what I'm reading. Meanwhile, ds is in that sliver that is the opposite and overmethylated. We finally are getting the genes to show it. For his mix, it's actually turning out to have some helpful mixes. The aggression gig can be connected to the methylation cycle too, meaning it might show up and get you some answers if you ran it through Yasko's knownyourgenetics thing (free). I don't know, just what I'm doing for ds. My dd is that kind of low energy type, and we posit she's an undermethylator (the more common presentation). She definitely responds to methyl donors. Yasko's stuff has a whole list of methyl donors.

Edited January 18, 2018 by PeterPan

[Lawyer&Mom]

The Social Thinking profiles mentioned above are amazing, and far more meaningful and nuanced than the DSM. I highly recommend checking them out if you haven’t already done so. I’m a Weak Interactive Social Communicator, which explains so much for me.

 

https://www.socialthinking.com/Articles?name=Social%20Thinking%20Social%20Communication%20Profile

[PeterPan]

Yup, I'm the one who brought them up on the boards. :D  We learned the basics of how to do their dynamic assessment at one of the training workshops I went to. Then I took my ds to a trained SLP who spent hours with him. It was really fascinating. She pegged my ds at ESC and other people have suggested that's about where I fall too. 

 

Well just if anyone's curious, we now have a fresh psych scheduled to do an ADOS and spend some time with him and update things. It will be interesting, because as we're doing a better job getting the aggression and anxiety tamed down with the supplement regimen, other behaviors are becoming more obvious. It's like layers of an onion.  I think she's going to run some adaptive living tools also, which is a great idea since those haven't been updated in two years. So we have it scheduled and we'll run it and just see what happens.

[AimeeM]

Both our younger boys are ASD, and both are "mixed level." 

 

DS5 is mixed levels 2 and 3, in three categories, but the majority of those was level 3.

DS8 is mixed levels as well, but the majority of those are level 2. 

 

 

I'll come back to this later and write more :)

 

[Lawyer&Mom]

Yup, I'm the one who brought them up on the boards. :D We learned the basics of how to do their dynamic assessment at one of the training workshops I went to. Then I took my ds to a trained SLP who spent hours with him. It was really fascinating. She pegged my ds at ESC and other people have suggested that's about where I fall too.

 

 

I have a family member who is very likely HFA/ESC. (Has a job, owns his home, has a group of friends he regularly plays cards with, but has unmistakable social deficits. You’d know within minutes of meeting him.) The social thinking profiles really helped me understand how he and I could both be autistic, when we are so different. (He’s what people picture with HFA, me not as much.) The profiles really helped me own and understand my WISC autism, so thank you for sharing them!

[Lecka]

That sounds like the  most recent for us.  My son had a range of functioning in different areas, of either mild or moderate, so they said mild-to-moderate.  I think he is level 2, from my impression.

 

His problem solving skills are a strength.  His language is delayed and all social skills depending on language are also very delayed.

 

Very informally I got a personal opinion from someone I consider knowledgeable, that he probably won't reach a 4th grade level of abstract thought or critical thinking when he is in 4th grade by age, but he could still get there on a later timeline.  She said she sees kids who start similar to my son who do, but she has no way to predict who or when. 

 

But problem solving and motor imitation are both strengths for him, and it goes a long way for a lot of life skills.  

 

It is really disappointing to me, because my son does have low language skills he qualifies for everything.  But there are some individual areas where he may do better than some kids who have higher language skills, who don't qualify for very much.  It is something I am so tired of, I can't stand it.   

[PeterPan]

That point about abstract thought and critical thinking is interesting. I don't know. Ds has done everything later. We'll see. Talked with the psych today, and she's going to dig in more on some areas she saw that she felt weren't adequately explored before, like the effect autism has on his academics and how you distinguish whether things are SLDs or the autism (or both I suppose). She's saying he's probably got areas where she'll be able to demonstrate that what they were blanket calling an SLD, where he is quite atypical from a person with that SLD, is because it was the autism. She'll also run the ADOS, which apparently can kick out a support level.

 

So we'll see. It will be interesting. Meanwhile, I started an antibiotic and prednisone today, because everybody needs pneumonia right before fresh psych evals. Just wouldn't be fun to go through the winter without pneumonia twice.

[Lecka]

That sounds really helpful! I hope it goes really well and helps you with getting a good IEP.

 

My son is going back next month, but I’m not sure what he will do. It’s another autism clinic, it has been 5 years and the doctor wanted me to sign up to go again, so I will take him for whatever. It’s one of those things where I send in a lot of paperwork and then they decide what they want to do. My understanding is I need to do it for paperwork purposes and to keep some people from thinking it’s weird I don’t have an update. I am not expecting much and then I can be pleasantly surprised if it is really good. But I have heard really positive things about this university clinic, so maybe it will be helpful for us.

[Lecka]

Also I really hope you don’t get pneumonia, I hope the medicine will work quickly!

[AimeeM]

Both our younger boys are ASD kiddos. They are 8 and 5 (turning 9 and 6 this spring/early summer). DS8 is, technically (on paper), in third grade; DS5 is, on paper, in kindergarten. All our kiddos are homeschooled, including them.

 

DS8 is classified as Level 2, across the board. 

DS5 is classified as Levels 2 and 3.

 

We have not done (and do not intend to do) ABA, for personal reasons, so I have nothing to add to some of the conversation, regarding if a Level 2 kiddo would benefit from it. After researching ABA, we decided against it at this time (I understand that people change, so who knows -- maybe we'll revisit it later). I will say that our private insurance covers it at about 80%, and while our state has done away with the waivers, most children who are "strong" level 2s would qualify for Tefra (our state's special needs medicaid, which is not income dependent), I think. Our sons' social worker is pushing me to apply for it, as it would pick up the other 20% for all therapies related to the ASD that private insurance doesn't cover, but honestly... the additional paperwork and evaluations are daunting. We have to prove that they meet "institutionalization standards," essentially. 

Regardless, we are seeking OT and ST for both, and are trying to find a clinic that could fit them both in on the same day. It's difficult because, while they both need ST and OT, their needs within each are so different that they need different therapists; then we have that DS5 cannot handle doing back to back sessions (OT and ST back to back), while DS8 would be capable of doing both (and would enjoy it). So, we're kind of just shopping around right now :p

 

DS8 (our level 2). For clarification, I will note that he has a number of other medical issues (congenital defects and similar) that have, since birth, affected his physical abilities and appearance. It can be hard to determine where his medical issues end and his ASD begins, and vice versa.

 

-in life-- N didn't potty train (peeing on potty) until about age 5/6. N refused to poop on the toilet until about age 7 -- this was more related to his fear of having a BM than refusal, though. N did recently learn to brush his own teeth, although we have to go back over the teeth after. N is able to get his own snack as long as it doesn't require opening (at which point he needs help). N is capable of doing chores, assuming he has been walked through it several times, and it doesn't involve more than a few steps to carry out. 

-in social-- N is a highly anxious child, both at home and in social settings. N tends to use "overly formal" (as his psych described it) language at times, which is, apparently, somewhat off-putting with other children. N tends to play more with younger children or with girls his age, as opposed to boys. This is likely because his very best friend is his 5 year old brother, and most of his social settings involve more girls than boys. For example, his dance class is entirely girls, with the exception of N and our other son. Regarding his ability to conform in social settings... it doesn't really exist. N has great difficulty understanding when to speak and when not to; when something is funny and when it isn't, or when something that was funny, no longer is. N is capable of complying to rules very, very well (in fact, N does well with rules in general), but only if they aren't deviated from -- when those rules are deviated from, with the endorsement of a trusted adult, even if only for a moment, N considers them no longer applicable.

 

-in school work--- N requires significant supports with academics, in reading and writing. N requires no supports in maths and content subjects. The only modifications made in his content subjects would be that I try to streamline any narrative for him, because he does have language delays as well. I believe he is also dyslexic, like his much-older sister (and several family members), and currently he is not considered a "reader" (reading level is on -- about -- a kindergarten level); same with writing, due to muscle tone issues. N becomes notably panicked and upset when he feels he isn't "doing something right."

 

 

-in language-- No funky holes, so to speak. As mentioned above, he does have a tendency to use more formal language. For example, instead of saying, "I want to / wanna go to the park," he is more likely to say, "I would appreciate a trip to the park." His articulation is considered in need of support.

 

Overall, N is our more sensitive child. He self-soothes by talking to himself and saying things like, "I will only do this two more times, then I will stop," etc. to himself. He constantly (as in, after any interaction) follows us to ask if we are "sure" that he or we made the right decision, and he experiences significant anxiety when he needs to make any decision for himself, no matter how trivial it may seem to others -- the red shirt or the white shirt; are you hungry now or do you want to wait to eat; do you need to use the bathroom; etc. His anxiety with decision making is related to worry about "what if I make the wrong decision," no matter how often we reassure him that we would never allow him to make a decision with a sincerely bad outcome. Any decision he does make is always followed by intense questioning about whether or not we believe he made the right decision. 

N is absolutely our more empathetic and compassionate child. He is always, first and foremost, concerned with how his behavior or words affect others, and how others' behavior and words affect, still, others. This causes him even more anxiety at times, and what puzzles us is that he is so very perceptive with regards to the emotions of others, but is unable to perceive when others are not being kind to him, if that unkindness is at all underhanded or vague (meaning, someone can call him an idiot, but if that someone is simultaneously smiling and interacting with N when they say it, N will continue to smile and interact, and insist they are his best friend). 

N's very best friends are his brother (below) and his much older sister (DD16). Despite that N appears unable to stick up for himself, he will absolutely break heads over his brother and sister. N and his brother are stuck like glue to each other, 95% of the time (the 5% they aren't is because we force them apart occasionally). 

 

 

DS5 (our levels 2 and 3). Dual dx of an expressive-receptive language delay. Non-verbal until about 3, then minimally verbal until about 4. M prefers to talk to himself and will spend as much time as is allowed talking to himself and sensory seeking (jumping from the stairs, pacing and jumping over and over, throwing his body from couch to love seat for the impact, etc.). Until recently, I slept on a floor with M for years, because he didn't "treat beds appropriately" (read: he used them for trampoline adventures, many of which ended badly, every time we decided to try a bed again, lol). He still, typically, sleeps on our bedroom floor, lest I (again) find him in his jack and jill bathroom, sitting in the sink with his tablet, with the water running, in the middle of the night). 

M's biggest hurdles are his rigidity, repetitive behaviors, and sensory seeking. These were classified as his Level 3 needs and have caused injuries in the past that needed immediate medical attention. These needs impact every decision made in our household, and every minute of every day for me. M's ability to be soothed when he is having a rather violent meltdown is minimal and when we hear the beginnings of one, everyone's hearts stop for a minute until we can determine that he is in an area where he is safe to "melt," or we hold him until he is able to be more conscious of his surroundings. 

M rarely makes eye contact. 

M is very physically affectionate. 

 

 

-in life-- M is not capable of dressing himself or any personal hygiene skills, although he can slide a toothbrush across his teeth, as Sissy taught him to do. He is able to wash his own hands. M wears diapers still. M is capable of using the toddler potty to pee in, but refuses to poop in it, so underwear is difficult, considering his inability to notice when he needs to poop. M is not able to get his own snacks with any regularity. 

 

-in social-- M must be supervised at all times in social settings that aren't in our house. M does not appear to have any understanding of dangerous situations that could seriously harm him, or even mildly harm him. Pain is not a deterrent for M. For many children, once they jump from the stairs once and skin their knee, they will not do it again, but M will assume he did it wrong the first time, and that means he just needs to try again, lol. This can apply to pets, structures, and water, so we keep a very close eye on him when we aren't in the house.

Because M is very sensitive to sudden noises, no matter how quiet or loud those noises are, he often wears his noise cancelling headphones in social settings. There are co-op days when he sits with his brother and listens to the read aloud for a bit first, but more likely he is hunched over in the corner of whatever room I'm in, with his headphones on, refusing to look at anyone -- typically because of the noises or the potential for noises. In social situations at our own home, however, he is the middle of the chaos at all times, because this is his comfort zone. 

M does very well in dance class. If he loses his place, his teacher just puts his feet where they belong. His success in this class is, however, largely due to his amazing dance teacher. Music is the one noise that M doesn't mind.

 

-in school work-- M actually requires almost no supports or modifications in this area, other than (relative) modifications made in the way I present new concepts and skills, because of his receptive language delays. M enjoys writing and math, and he is working on grade level in most areas.

 

-in language-- M's expressive language has taken off. He still very much enjoys talking to himself, but he verbally interacts with others now, and regularly. His holes are almost entirely in his receptive language. If we really need M to understand what we are saying (usually for safety reasons), we need to use what his ST called "caveman speak." M tends to "lose" words that are spoken to him, if they are many. For example, if I say, "Don't hit your brother!" M repeats back, "Hit brother." M uses pronouns indiscriminately and incorrectly most of the time. 

 

 

 

 

Edited January 19, 2018 by AimeeM

[Lecka]

That is awesome they are so close :) That is wonderful!

 

I decided to delete but I am going to say — on paper my son would have looked similar, but our home situation was really not good. It was nothing like you have. And that is why I like ABA! It is a really different situation.

 

I can see why people look at your paperwork and suggest ABA, and I can also see that you don’t have the same situation at all that some people may have who look the same on paper.

 

I get misunderstood that way periodically, when there are things that on paper seem like they would be good but I know that they aren’t a good fit or just aren’t a high priority. It is frustrating to feel like — if you knew what I was doing and how it was working out, you might think I knew what I was doing. But just looking on paper and giving out cookie cutter recommendations doesn’t lead people to think I am doing the right things sometimes.

[PeterPan]

Also I really hope you don’t get pneumonia, I hope the medicine will work quickly!

 

I guess it's called pneumonia. They just politely said infection. I have no outward signs (just a little coughing with light amount of mucus, nothing in my ears or sinus), but my lungs were hurting, really hurting, like rub your chest hurting. So I guess hurting lungs plus chills and fever (which developed more as the day progressed) are the ticket to an antibiotic. I was really disgusted because I worked SO HARD not to get sick. 

[Lecka]

Take care of yourself! I bet your efforts will still help you not get as sick, I hope so! I am glad you have gotten antibiotics and I hope they will help!

 

Aimee — I am sorry to hear about the meltdowns too, it’s hard to see our kids upset and not be able to do much. But I am sure he knows you are concerned and doing everything you can.

[PeterPan]

Aimee, thanks for taking the time to explain all that! It was very revelatory. I guess it makes sense, but that really colors it a different way if the standard for medicaid is would be institutionalized. Even to have to have that discussion is hard. :( Double :(

 

As a total aside, even though what we did was called (loosely) ABA, in reality it's much more similar to what I read about in the Play Project book. More about intensity of interaction, and I think that's something lots of people can identify with. And with the Play Project book they emphasis what we as homeschoolers already intuitively know, that we matter too, that we are there doing it. 

 

Definitely thanks for writing all that out. I guess we'll just see what happens now and let it roll. I think, just my thinking, that they could just as easily stay high end of 1 with ds. I don't know. I just think it's a possibility. Some things overlap with 2. Nuts, on the GARS he has had sections that were straight level 3s. He's that mix. He's definitely not meeting the criteria in your state when it says institutionalizing standards. He's more in the live somewhere but needs help to problem solve. 

 

Do you think the IQ and higher function level drives the anxiety in your 8 yo? It's like he's trying to do so much that he can't be blissfully unaware and calm. :(

[PeterPan]

My ds' duration of meltdowns decreased when we began inhome work. I'm not sure exactly why. A lot of what we were doing (with in-home workers, with me) was play, but there was maybe play and then a demand. He would lose it and need a break, but he liked the workers overall enough (hello, pretty girls!) that he wanted to be back. And so he went from meltdowns with durations of HOURS to maybe 5 minutes. That was over maybe a 6 months or a year or year and a half, I don't know. I just kinda happened.

 

We had workers at the time who were $20 an hour, college students basically. They weren't anything fancy, and they weren't doing anything impossible or looking like DTT or anything weird. They would alternate play and a demand like some school work.

 

I will say that, other than the meltdowns (which were ds' level 3 area on the GARS, also another area to do with communication) I don't identify my ds with your M. That's definite. Definite differences there of degree. When you start to say your 8 yo though, it's more on the line and I hedge. I really don't know. Maybe with the day of the week. I've met some kids who wear headphones all the time, etc. That's not ds. Like nobody meets him and thinks oh you ought to be doing that. But we are to where we need to have them with us. We haven't been taking them, and there are just times he needs them, places. But he's not an overall, definitely going to show up with headphones kinda kid. We meet those in activities, and that's not him. And those kids with engage less and sometimes have less sense of group plan, and that's not him. It's a harder level of function. Ds is going to be the one watching them and asking why they aren't staying with the group and getting frustrated. He's had a ton of social thinking instruction, so he watches them and is bothered by it. 

 

So we'll see. What's obvious is that every dc here is a unique mix. It hasn't been very homogenous at all. Like it doesn't sound like the sample from DSM really fits most of the level 2 kids. The psychs must have a picture in their minds and know it when they see it. So we'll just see, and we'll just roll with it.

[AimeeM]

Aimee, thanks for taking the time to explain all that! It was very revelatory. I guess it makes sense, but that really colors it a different way if the standard for medicaid is would be institutionalized. Even to have to have that discussion is hard. :( Double :(

 

As a total aside, even though what we did was called (loosely) ABA, in reality it's much more similar to what I read about in the Play Project book. More about intensity of interaction, and I think that's something lots of people can identify with. And with the Play Project book they emphasis what we as homeschoolers already intuitively know, that we matter too, that we are there doing it. 

 

Definitely thanks for writing all that out. I guess we'll just see what happens now and let it roll. I think, just my thinking, that they could just as easily stay high end of 1 with ds. I don't know. I just think it's a possibility. Some things overlap with 2. Nuts, on the GARS he has had sections that were straight level 3s. He's that mix. He's definitely not meeting the criteria in your state when it says institutionalizing standards. He's more in the live somewhere but needs help to problem solve. 

 

Do you think the IQ and higher function level drives the anxiety in your 8 yo? It's like he's trying to do so much that he can't be blissfully unaware and calm. :(

 

To clarify, the standards are that they meet the criteria to be institutionalized (or have a life threatening medical condition) -- not that they ever would be institutionalized. 

 

I have heard that a lot of ABAs veer off and away from ABA. My issue is that, because it's all called ABA (and they can't, for insurance reasons, call it or talk about it as anything but that), there is no way to differentiate between someone who is "old school ABA" and somebody who is more Floortime, for example. And, after once seeing the actual degree-holding ABA therapist for the initial intakes, you get line therapists -- who are poorly compensated (and for which there is a high turnover in my area), and their training varies depending on the agency. There are typically several line therapists assigned to rotate with each kid (when they are slated to receive as much ABA as our boys are, which us between 30-40 hours weekly, each), and neither of our boys would handle the inconsistency well. 

Too many variables for us, kwim?

 

Honestly, I do not believe DS8 is higher functioning than DS5. I think a few things played into their level classifications, despite that they were both evaluated by the same private psychologist. 

One, DS8's evaluations weren't done until about a year ago, so he was considered school age, which means his evaluations required he sit down and somewhat still for much of it, and more closely resembled standardized testing. At one point, as noted in his evaluation paperwork, he simply stated that he was "done talking." 

Two, DS8's evaluations did not take into consideration his other medical conditions and overall health. He is fatigued frequently, has vision problems (the extent of which we didn't know about at the time of the eval).

 

Whereas, DS5's evaluations were entirely play based, really, because he had his evaluations done prior to him being considered school age. And he was used to the play-based model, having had tons of ST and early interventions. However, a whole lot of it seemed to require he communicate verbally. Well, he was considered non-verbal only months prior to that evaluation :P 

 

With that said, I don't really disagree with DS5's level classifications. It is noted in his paperwork that with intensive interventions, his levels will likely change (only a bit, but some). At this point the paperwork for him does go further to note that he is considered severely affected, besides the mixed levels 2 and 3. 

 

We will have both boys re-evaluated in another year or two. Technically, DS5's IQ is higher than DS8's, but at certain points in the evaluations, both boys refused to participate further, and she said she had to score it based on that (and they technically couldn't or wouldn't do the rest, which had to be scored as well). 

[Crimson Wife]

So we'll see. What's obvious is that every dc here is a unique mix. It hasn't been very homogenous at all. Like it doesn't sound like the sample from DSM really fits most of the level 2 kids. The psychs must have a picture in their minds and know it when they see it. So we'll just see, and we'll just roll with it.

I think this gets back to the whole argument that “autism†lumps together a wide variety of underlying causes. We actually found the cause of my daughter’s autism (a rare neurological syndrome). So her challenges are not going to be the same as anyone else with an ASD diagnosis with a different underlying cause.

 

Her biggest challenge is the mixed expressive-receptive language delay. We recently had her triennial IEP testing and the scores ranged from <0.1st percentile to a high of the 7th percentile. So we’re not talking just some funky holes (though she does have those) but a major barrier to communication.

 

We have to spend so much effort trying to get her to understand what people are saying to her. Once she does “get itâ€, then the underlying high IQ takes over and she learns quickly. It’s like watching a foreign film in some language you did not speak but then suddenly someone turns on English language subtitles. You would be all, “oh, so THAT is what is going onâ€.

 

 

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[PeterPan]

Yeah, I can see why you're dissatisfied with what is being offered to you for services. I wouldn't want that either, and it's not what I had. If you have time at some point to read Play Project (it's a really light read), that really has the spirit of where we were. Like expand that thought process to older kids. Solomon says through 5, but the spirit is still there. There was a lot I resonated with in the book, where I'm with you that DTT in a room somewhere wouldn't have done much for us.

 

We're getting eval'd for RDI in a bit, and I think it will be good timing. We've done so much from other angles (language, cognitive awareness, social thinking) that I think bringing in more for nonverbals in a really focused way will be good. 

 

For my ds, anyone who is willing to work intensely with ds gets him a bump. Like it's actually a noticeable bump of engagement. So that's what I look for. If he comes out more engaged, more connected, that to me is really good. And sometimes that crosses labels. It's more about how the person engages with him.

[AimeeM]

ETA: autism runs in the family here. The psych seems to think DH is on the spectrum, but he would fall into the classification of Level 1s, most likely, and almost entirely in the social arena, but definitely dipping into the rigidity as wel. He grew up in a very small, supportive, family-model Catholic school, though, and was able to find his "people" early on. His gifts struggles were supported by the school and family. DH is a college-educated professional (engineer), and I have to say that many in his circle of friends seem to have similar tendencies on some level. DH also has an almost absurdly high IQ, though, so it's hard to see where that may come into play -- as in, I would think it somewhat typical that if his heavy gifts lean almost entirely in one direction, other things (like social skills and the ability to be flexible) would suffer; you only 100% of anything to divide, I mean. So those things noted as ASD tendencies, may just be a compensation deficit. The psych, I think, was remarking about the number of times DH replied, "Well, what's wrong with that -- I did those things, too, and sometimes still do!" when he came to the conclusion session of DS5's evaluations, lol. The psych just looked at him and said, "Well, yes; ASD can run in families." The look on his face was priceless. 

 

We believe DH's father was also on the spectrum, but less high functioning. He was pulled out of school in fifth grade (due to illness and, I guess, just being different) -- however, he taught himself how to play several instruments, wrote music, and was a sincerely talented artist. He owned a business (music shop and private music teacher, teaching piano, guitar, drums, and accordion) and raised a family, even after his wife died early, leaving him with an adolescent son and an infant son -- but he didn't do this alone. He had never left his parents' home, where he lived with his sons (and, before her death, his wife), and his mother helped him (substantially) raise the boys. It is my understanding that he was always prone to anxiety and meltdowns, when he was younger, and as an adult. Once Grandma died and he was sincerely living alone, he was miserable, and the tendencies only became worse, until he never left the house, but to across the street to his shop. He had to be talked through every new situation (even just going to the grocery store up the road, accompanied by another person) in much the same way as we script our boys, and this was well into his 70's and 80's. 

However, he did lead a very productive life. 

 

 

I'm going to delete this later. Please don't quote.

Edited January 19, 2018 by AimeeM

[PeterPan]

Crimson, the genetics stuff is really interesting. I'm slowly going through ds' genes. It made me wonder if I could find a geneticist who would be worth their salt. I'll bet it's like speech or anything else that it's really WIDE and they would have so many things to be expert in that they might be expert in some things and not your thing. So I'm just tracking down individual genes right now to see what changes we can make. Like there are literally genes that are explaining the sensory, genes for the aggression, etc. It's really whack. And one of them literally just means he needs to be on vitamin D! Like it's so seemingly simple that I would have poo-pooed it. But now that I've seen the genes and the explanation, and I'm like YES HE WILL TAKE THIS, lol.

[PeterPan]

...My ds is different. He's more feral, more off the reservation, more in his own world. I really don't see him following by the rules and going ok this is what I have to play along. I'm really devil may care, but he doesn't even believe in the devil. He literally just writes his own rules and lives his own way, in his own world, with no regard for any of the norms of humanity. He is himself... 

 

SaveSave

Edited January 19, 2018 by PeterPan

[AimeeM]

My ds is different. He's more feral, more off the reservation, more in his own world. I really don't see him following by the rules and going ok this is what I have to play along. I'm really devil may care, but he doesn't even believe in the devil. He literally just writes his own rules and lives his own way, in his own world, with no regard for any of the norms of humanity. He is himself. 

 

Feral is a good way to describe DS5 as well :) As is "in his own little world." Like your boy, he is absolutely playing by his own rules, and he isn't hesitant to actually say, "Ma, I literally do not care," lol. 

Social communication and skills is the category in which DS5 was identified as a Level 2, so I can see why you feel your boy isn't a Level 1. (His Level 3s are in rigidity and repetition, which is what leads to the meltdowns and sensory issues.)

 

If the DSM is accurate, though, some if it is simply personality, though. Because DS8 (who absolutely does care what the devil and anyone else feels) is the polar opposite, but still pulled a Level 2 for social skills and communication. 

 

What's funny is that I can see (or just have a feeling; call it instincts and seeing it day in and day out) DS5 at some point functioning better (or "more") as an adult with less hurdles than I can see the same with DS8. I can't quite put my finger on it, but the feeling is there. 

[PeterPan]

That is wild. And yes, that's what bugs me is my gut sense that he will have issues with employability. Like I think we're talking part-time employability. I think he might struggle to resolve to something boring, and he will struggle to be employed in his perseverative interest. And it goes back to that intangible feralness. I hadn't tried to think of it in terms of Social Thinking, hmm. I don't know what it reflects, lol. But that's an interesting point that he could be up and down.

 

We'll see. A few hours and they'll be running him through the ADOS. He's such a wild card, he could do ANYTHING in there, lol.

[Pegs]

Hopefully the ADOS and the genetics investigations give you some answers.

 

My boy has been diagnosed ASD-1 with "significant anxiety." Like you, I have sometimes wondered whether his support needs were more like level 2, because this is far from typical parenting I am offering.

 

If I find some time later I will PM you about his strengths and challenges.

[TrixieB]

Innisfree, you described my 17yo almost exactly.