Son Was Diagnosed With Autism Yesterday

[Turkish]

When he was a toddler,  I used to call him "Baby Rainman." Of course that's politically incorrect, and despite my twisted sense of humor I stopped. He used to like to stack, organize and count things.  He'd often be lost in his own world.  

As he got older (he'll turn 7 next month,  and he's currently in first grade), the lining up,  stacking , and counting behaviors subsided,  and he grew into building things: Legos, models at least 2 years beyond the recommended minimum age.  He'd read the directions and accurately assemble the models.  I played with Legos at that age, but reading directions? Yeah,  right.  No.  

He can be easily triggered emotionally,  but he's gotten better.  Poor kid's been through a lot of changes these last three years.  Mom moved out.  Her bf right away, then step dad, wirnessing his little sister be sexually abused,  witnessing his mom's abuse of her H (verbal,  and recently physical),  moving once on their side,  now again this month as they are spring,  at least regarding cohabitation.  

Mom has always been concerned with his social skills.  I can't help but think of how much she's engaging in something similar to projective identification. S6 plays with other kids just fine,  but sometimes needs to spend some time playing by himself first.  It soothes his mind.  I can relate.  I'm a compulsive reader. I need the data input.  No one's ever accused me of being detached from humanity... .except for my ex,  from her (there is a little truth to this, at least at the end).

So we spent most of the day yesterday in the ASD evaluation. His mom and I were interviewed for hours.  At one point we watched a certain series of tests from behind one easy glass.  I knew I should have coached him in being sure to make eye contact.  I could see them marking him down.  He was bored.  He said so.  That went against him.  Later, we took him to the mall.  The clerk at Subway was Spanish. I told him,  in Spanish,  to talk to get like that.  He did well,  kept eye contact,  charmed the lady,  thanked her sincerely, very polite. Yet an hour previously, one of the two doctors diagnosed him as having Level 1 Autism, or what they used to call Aspberger's before DSM-5.

I was pissed. The doc picked up on it,  and I clamped down my emotions quickly.  The next step is having evaluators come to our homes to observe us and help.  I still can't believe a agreed to this.  I talked to three friends who had sons with some of the same traits. They're doing fine.  All three said,  based upon my descriptions of the tests, that their sons would likely have been diagnosed similarly.  

https://www.vision.org/visionmedia/Interview-Gnaulati-ADHD-Autism-Overdiagnosis-85775.aspx


"... .problems arise when we listen to criteria and include “mild cases”; I think it’s these cases that result in the astronomical rise in diagnoses. I would argue that it’s extraordinarily difficult to tease apart what is a mild case of autism spectrum disorder versus a variety of other things that are a part of normal human variation, especially in boys.
Boys tend to be more egoistic in their communication style. When they’re around other kids who share their interest, they may go on and on about a technical interest that they’re turned on by, not necessarily picking their heads up to look around to see if they should stop talking and start listening."

This is our son.  I saw him "fail" this test yesterday,  going on reciting facts rather than picking up the doctor's cue which required our son asking about him.  This is different than our son's teacher's observations,  in that he advocates for the more helpless in his class.

"We Americans like to think of ourselves as living in a diverse society where we’re accepting of people of all races and colors and sexual orientations, but I think we are very discriminatory in terms of human difference. I think the British are far more tolerant of people’s eccentricities. In the United States we pathologize human variance, or people who are outside the norm in terms of their behavior, their temperament. A lot of children exist outside the average bandwidth in terms of their behavior or temperament—they may be quirky, difficult, a little strange—and so we label them as having mild cases of these disorders."

Quirky? A little,  but other children have always liked him,  and been drawn to him,  a lot.  At the park, he seeks out kids of all ages to play with and never has trouble socializing.  He is big and looks two years older than he is.  That's sometimes resulted in issues,  but in my opinion,  his mom makes this a bigger deal than it is.  Over-rescuing can be a problem too.

I'm less mad than I was yesterday,  she has the kids for the weekend,  but I'm still trying to process this positively.

[catclaw]

Hey turkish!

I know what you mean. I don't know, but i can't shake off the impression that pwBPD need a diagnosis to make sure they are not the problem when whatever problem pops up. Now, there's a huge variety of personal traits that mix into being the kid of a pwBPD, being the kid of a parent with autistic traits (as is my SS, my DH has autistic traits), acquired coping mechanisms and so on.

What people (even doctors during diagnostic appointments) tend to forget, is the problem, that (no matter which test you use, be it quantitative or qualitative, no matter the quality and the standardisation), given that it's an artificial situation, NEVER depicts the client's reality in all its facettes.  That's what you experienced comparing the situation with the doc and the situation at subway.

Is the result final? Is the help you are receiving final? And are you ok with it?

[Sunfl0wer]

Seems it is an evaluators job to gather information to help.

I am not sure why you would want to coach your son to make eye contact or such?  Or think he "failed" stuff.  It IS to gather info.

My son also has a diagnosis of ASD, Aspergers from years ago, but I suppose Autism with DSM changes.  (We use both to describe him.  He self identifies with either.)

My son is quite bright by anyone's standards.  He can learn more about topics he is interested in than many experts in those fields.

If you asked him, if he is glad to know that he has Aspergers, he would be furious if this information was kept from him, it would have caused him more harm than good to not grasp why others are learning and behaving differently than he expects.

Sure, he can pass as being "NT" (neurotypical/aka not ASD) many doctors surely would miss it on his good days.  Yet the truth remains... .The way his brain processes info remains more like an autistic than a NT, and for him to be unaware, or for me to have denied this, would have disabled him.  He needs to know how his brain works differently to save him the frustrations of seeing around him why certain things come easily to the majority, while the majority do not grasp many things he does grasp.  He does need to learn formally these things, and that fact that he CAN learn these things does nit make him NOT autistic.  Sure, he can fake eye contact, can look close enough to your ear to get away with it, yet he will tell you this is not at all so comfy for him and prefers to reserve "faking it" for public situations, cause it is not how his brain works, the demands are exhausting.  

His auditory processing skills are superb, so eye contact to him is useless, his peripheral vision is more superb than central unlike most people, so why force him to make eye contact except to appear like another who expects it like at say a job interview... .or such.  (He knows when to fake it and when to conserve that and avoid the stress/effort)

My son, and many who have ASD, have learned to compensate.  Have learned social skills formally rather than intuitively... .Yet, imo, I rather get myself testing, learn what makes me tick, what doesn't, how my brain works, and work with that info... .Then pretend I work on the inside the way others appear on their outsides.

Idk, IMO, gaining understanding of a person with autism and helping them understand more about themself and others... .Is the best gift for their potential.

I have noticed many folks on here on the spectrum, mostly on other boards... .Idk, maybe one or such may chime in too.

Currently... .
My son is over 18 and I also have a friend with ASD who is over 30 and figuring out dating and girls, well, is about impossible until I explained my friends autism to him and explain how girls and dating there is a ton of unspoken social expectations that drive the non ASD person, yet are way more challenging for someone who thinks more literal, doesn't play any social games and such... .Really a different world in dating as one with ASD... .  So yea, some stuff can be faked that is simple... .But what remains... .Is someone who needs to be formally taught/told what comes automatically/instinctively to others. 

[soundofmusicgirl]

Turkish, my SS was also diagnosed with ASD.

I have read many a story and reports that most likely the autism diagnosis is made because of the poor social skills and coping mechanisms they learn with a BPD parent.
My brother is a therapist and he recently pointed out to me again that the main issues that kids with a BPD parent have look very much like autism and therefore are simply diagnosed that way.

I can definitely say that in our situation the diagnosis was to help BPDmom point the finger and use it again and again to prevent and interrupt visitation. The original Psychiatrist that diagnosed him also said he was a "mild case".

I am pretty sure that my SS who is diagnosed often "checks out" and is in his own world simply to protect himself from BPDmom.

Please also note that diagnosing a child with autism at the age of 7 is actually quiet late. Usually the true autism cases are diagnosed when the children are 3-4 or even before then, to start early intervention.

[VitaminC]

I'm certainly no expert but find this interesting and hope I may add my 2 cents?

A friend of mine recently had her 12 year old son assessed. How it came about was during an ordinary doctor's visit where the doc picked up on the high voice that her son uses to speak, a lack of concentration during the visit, and an American accent which the child should not have given that he doesn't live in the States and is not exposed to much US tv or films etc.

My friend was very perturbed by the possibility of Autism. She spoke about his stacking behaviours when he was very young; stacking and arranging things in complex patterns and said how she had always attributed this kind of thing (there were other examples) to his uniqueness and now was having to re-consider and see this as a pathology. Naturally, this would be distressing.

From Turkish' quote above what really leapt out at me was the text about pathologizing behaviours and the lack of accepting people's quirks and individuality. This is something I often think about too. The labels are meant to be helpful, and they can be as long as there is no stigma attached. And yet we fight against these labels because they are somehow reductive and make pie charts out of the art that is a human.

My friend's son was tested and the results were officially "inconclusive". So.

I know this adds nothing much to the discussion, nothing practical. I guess I am just campaigning for humans, with all their quirky and nutty and unique ways of being in the world. 

[david]

I am a high school math teacher. I had a student years ago that was diagnosed with Asperger's. He was the best student in my class that year. He ran circles around everyone else. I would put extra credit questions on my test that were ahead of where we were. He was the only person that ever got every one correct. The most before that was maybe around 30%.
His quirkiness was with social interactions and he struggled understanding the unspoken social expectations. He was, however, breathtakingly honest and direct when he didn't understand something. I found that refreshing in a teen.
I think understanding where he is and helping him learn the things that don't oftentimes come naturally for him is the best thing any one can do for any child. On the flip side, the student I had, made me think about things that most people take for granted and I questioned some of the quirky things that people "normally" do.

[Turkish]

Maybe I'm wrong,  but I don't see that coaching him would be any different than coaching a kid on proper social etiquette. Say please,  thank you,  and such. 

I won't go so far as to say this feels like Munchausen's by proxy, but it feels similar , in that his mom may be projecting her own issues.  Her admission of being diagnosed with "anxiety" in addition to depression was interesting. 

Easter Seals contacted us about an ABA, another evaluation.  I'll call them tomorrow to make an appointment. 

I had the kids this weekend.  S6 threw a little tantrum when I took them to fly a kite. But we got past it. I trust my understanding of my kid,  even though he walked off,  pissed for a little bit.  We were ok afterwards.  I don't make as big a deal of his tantrums as I think his mom does.  The day before,  I sent both kids to separate rooms for fighting.  Ten minutes later , they were both fine,  even if D4 told me she threw my blankets off my bed to show me she was angry.  I told her,  "that's fine that you were angry,  but it was still unacceptable to hit your brother." S6 came out.  We watched Paddington. They were fine. 

[Sunfl0wer]

Maybe I'm wrong,  but I don't see that coaching him would be any different than coaching a kid on proper social etiquette. Say please,  thank you,  and such. 

I won't go so far as to say this feels like Munchausen's by proxy, but it feels similar , in that his mom may be projecting her own issues.  Her admission of being diagnosed with "anxiety" in addition to depression was interesting. 

Just gonna reply super logical here... .

Sure, mom may be "benefitting" from trying to get son labeled.  My sis with BPD has a girl who is ASD.  I feel her girl is more on the Aspergers end of the spectrum, but has behavioral issues due to mom "appreciating" her label.  When her kid acts out, instead of guiding her and such, she simply "uses the ASD" card and never has to look at her bad parenting.  Tells others her kid can't help it, she has ASD.  I disagree.  I feel even with the ASD, the kid has more potential and mom is exacerbating her difficulties.

Imo, with my sis... .  Kid certainly has different neurological wiring, yet now has additional burden of behavioral issues due to mom blaming ASD vs addressing some neuro issues.

So...   Simply... .  Having a parent with BPD who is enjoying a "martyr status of mom with disabled kid"... .  Does not mean kid does or doesn't have ASD.  (Hence why testing is helpful)

Similarly, Also, providing formal teaching to "pass" an ASD test also does not mean a kid does or doesn't have ASD.

Sounds like the two of you got your own emotional reasons to diagnose or not diagnose this kid. Then there is the issue of mom and dad disagreeing that seems to add additional emotion to the mix too.

I wonder how you separate, deal with what the kid objectively needs vs what parents feel?
(I do mean this sincerely and kindly.)

[Turkish]

Sounds like the two of you got your own emotional reasons to diagnose or not diagnose this kid. Then there is the issue of mom and dad disagreeing that seems to add additional emotion to the mix too.

I wonder how you separate, deal with what the kid objectively needs vs what parents feel?
(I do mean this sincerely and kindly.)

You're challenging me here,  which is good.  I've posted this to elicit alternate views as well.  

What I go back to is that not a single person in our son's life,  including 4 teachers now and maybe a dozen Sunday school guardians,  have ever commented that there was an issue; quite the opposite,  in fact.  The common feedback I've gotten for these years is that he's a sweet boy. My ex labeled him a "genius" (until the T in our parenting class said that labeling kids can be harmful).

My ex admitted another another Dx of hers during the intake interviews: anxiety.  No surprise to me.  This isn't on the level of my buddy whose mother had him dragging around an oxygen tank like an invalid when all he had was mild asthma (one wonders about the doctors who wrote that prescription), but it feels similar. 

I could stop this at any time,  but I'm giving the system the benefit of the doubt.  I'll call the Easter  Seals tomorrow to set up an appointment for an ABA assessment and we'll go from there.  

[Sunfl0wer]

You're challenging me here,  which is good.  I've posted this to elicit alternate views as well.  

Appreciate you taking it well.  I can appear harsh, not my intent.

I could stop this at any time,  but I'm giving the system the benefit of the doubt.  I'll call the Easter  Seals tomorrow to set up an appointment for an ABA assessment and we'll go from there.  

Sounds fair enough.

... .

Just want to share a little of my experience... .
(Not assuming your son has ASD or does not either... .just ramblin)

My son was 3 and in preschool (18yrs ago) when his teachers tried bringing it to my attention his "behavior."  It really confused me a lot because without any prior knowledge of ASD, what they were describing made zero sense to me at all.  
Ex.
"S3 is getting up and getting the milk at meal times"
"S3 doesn't use the art station until no other kids are there"
"He can play with and watch the snails for a long time"

So I was a bit livid to be honest, they seemed nervous sharing these facts with me.  I was not at all upset to hear them, as I knew my kid, and yea, this was nothing far off there.  I was beginning to think they were indeed morons! Who the heck has a problem with my 3 year old being self sufficient enough to get off his butt and help himself to milk?  

What they failed to do was to connect the dots for me and explain that what they actually were seeing and describing was early signs of autism.  In their attempt to be vague, they did a poor poor job of explaining stuff.  I had NO knowledge at all of anything ASD at that point... .So to me, they clearly must be nuts to be bothered by my kid who gets his own friggen milk. My kid was in no way any "behavior" issue in class other than some minor fussiness of needing to wash up when dirty via paints or food.  Also was picky about food being messy.

So this is what they actually were seeing with the milk... .
They were seeing a kid who did not socially utilize his peers for his benefit.  He would not ask a kid to pass the milk, because social stuff didn't occur to him.  He was clueless on how to enter the space of other kids.  Lucky for him, he had a best friend who would recruit him for his play.  So yea, when I entered the room, my kid looked fine... .Was playing and doing the things all the other kids were... .Even had friends.  

What they were seeing with the snails... .
A kid who's ability to focus on minor details of something and be interested and focused for over an hour, was remarkable. (His peers maybe focused on the stations for 10 mins at a time or so) Yea, an ASD trait, but in my head, they were morons cause it was NOT a problem, yet they expressed it with great concern.

What they were seeing with the art station... .
A kid who didn't like sharing space with other kids unless other kids "behaved."  He did not tolerate well other kids elbows bumping or paint bumping on him.  He was also being "sensory defensive" and not liking paint on him.  Same issue with the food.

Looking back... .
I realize they have tons of 3 yr olds, I only had one.  They could see more easily how different he was to all the other kids.  No way i could pick up on this.  He seriously was NOT a problem in the class so what was the problem?  None of these "problems" were problems really in them self anyways.

Well, he never did get the diagnosis after that slew of evaluations, cause that is kinda the way it goes.  (He got the Dx 4yrs later, via independent evaluator) Many do not until after the age of 7.  He did get qualified for services in preK.  He had OT and ST working with him visiting the class.  From his ST services, I was able to realize he really was missing out on picking up many language nuances the other kids were competent with.  She worked on prepositions with him a lot and some other things. She was pretty valuable.

His OT was not so good at her job.  She was a bit useless unfortunately.  He could have benefitted from a better one, but oh well.

Anyway... .
His differences were not too much an issue until he entered 1st grade.  The demands of writing, were a bit much for him and remain so.  He also has dysgraphia which is common for many.  He types just fine tho.

The social challenges didn't really rear it's head until middle school when kids start forming somewhat of clicks and such, and well, other kids are simply bullies.  He has always been quite empathetic and kind.  Not at all to succumb to peer pressure type or following trends, and a very moral person.

Anyways... .
Idk, though maybe sharing what went on when my kid was younger could help something, or not, either way... .Am wishing you peace with however things go.

[Sunfl0wer]

For whatever reason... .
Felt like sharing... .

I am recalling my own emotional struggle from that time.  I was afraid a Dx would mean that somehow my kid was going to be a different kid.  I somehow thought the Dx itself would change him.  I know this is irrational, however, my fear was I would be handed a kid who was not the same somehow.

Let me explain... .
I recall with great loss over reading over his evals and seeing the word, "atypical" grimace.  My son also did engage in the very occasional hand flapping when nervous excited, yet so rare... .like at his b day party.  So I began to have to see my kid through their eyes.  I tried to see the grimace as some sorta defect.  It angered me, cause in my head, I had already come to know this aspect of my son as one of his fine quirks.  When I read about him being sensory defensive and such... .In my head I was thinking... .More words to tell me... ."My kid is broken."  Each, remark they made, made me feel like a parent checking out their newborn and learning he was missing another toe.  It hurt.  I did not want the grimace, or hand flapping to be any indication of brokenness, after all, there was nothing wrong with any of those things.

I guess I am saying... .
I had to go through a grieving process.
I had to balance out learning to look at him through a clinical lens (where I was on the look out for "defects" to help facilitate his development, and integrate still appreciating his quirks for being him, vs symptoms of a syndrome.

It is a process.
I still find myself occasionally grieving... .
As I compare him to peers his age... .
And my son still struggles with severe sensory issues.  (His are not typical even for an atypical ASD person)
Mostly though, he appreciates his different way of thinking and analyzing and expressions of intelligence.  He would feel disabled in many ways to be NT.  He does not want the burdens of "fitting in" or being emotionally driven when logic is pragmatic.
Anyways... .
Rambling done.

[Turkish]

I got the report on the mail last night.  I scanned it and sent it to his mom.  I had his mom set up the appointment with the ESPN, in two weeks.  I know it's a non profit, but I wonder hope much their services will cost. I'm not Daddy Warbucks, but I do well.  I suppose this isn't too much of a concern, even though it's stipulated that we share costs.  It might be an issue on her side since she's moving out from her H and paying almost $2K for a 1 bedroom apartment. 

The evaluation is fascinating.  I wish I could share it.  Reading it helped me to more evaluate this from an analytical perspective.  S6's intelligence test put him on the 92nd percentile. Very high,  but not a genius as his mother kept saying, wanting him to skip grades. 

We got a packet of yet more forms, which will be annoying to fill out,  once again.  I'll do that over the weekend. 

I can't say much more for now.  Your thoughts on differentiating how you view your son verses how others do are helpful.  However,  I still fall into the camp that there's nothing wrong here,  and that his mother is over emphasising the social issues. 

[enlighten me]

Hi Turkish

One thought springs to mind with mums behaviour and that is distraction. I was just talking to my ex mother in law the other day and we were saying how my ex wife couldn't live a normal mundane life with normal mundane conversations. Even the school run was like an opening scene from a James Bond movie with people trying to run her off the road.

She always has to have something to complain about or boast about. My eldest has renal failure and she would use this as a conversation piece to either gain sympathy or praise for how well she was coping with it.

Maybe your ex is using this as a distraction. Something to focus on to avoid her day to day life?

[Turkish]

The kids' mom is now 3 months separated from her H. She seems more stable and engaged. No recent drama there.

Our HMO (health maintenance organization) approved up to 12 hrs/week direct behavioral therapy, 6.5 hrs/month second level supervisory and 2.5 hrs/month top level supervision. This is all direct interaction. People come into our homes/lives to do this. 

We lost the after work hours dye to my ex playing phone tag for 3 days (not sure why they called her first). Mom referred it to me,  I called and connected to set it up.  Minor annoyance. 

The first session started at my ex's apartment. The supervisor arrived on time,  the main therapy tech was late.  Session went ok. D4 was the drama, throwing a tantrum. When the supervisor sat down with us to go over the legalese, I quipped, "can we get a 2-for-1?" She laughed. Earlier D4 lost at a board game they were all playing to break the ice and dysregulated. She hid behind a chair, then hit her brother. I picked her up and told her that was unacceptable. Even me using SET, she scratched me.  I sent her away,  and she went into the room and slammed the door as hard as an adult would.  My ex, who was washing dishes the whole time,  looked at me and I said,  "that's just our daughter." She knows. D4 (5 in 2 weeks) came out of the room 10 minutes later,  happy and engaged in play.  5 or BPD? 

Two days later,  the therapy tech showed up almost an hour late.  35 mins in,  he finally did call me to say that his car broke down and he got an Uber. OK, but mom and I received very clear guidelines on how they would terminate service if we cancelled or were late based upon their guidelines. He came to my house.  He's good with the kids.  Doesn't speak English well. Like barely. My impression is that he's a grad student. I've worked in high tech for 25 years,  with people from over a dozen countries. I can't recall an engineer who's not been as fluent. Still, he's good with the kids,  and it benefits them interacting with another culture. We're mostly Mexican/Vietnamese/Anglo in our hood. I was only a little embarrassed when S7 asked (then insisted) the guy was from Japan.  He's from Taiwan 

The third session was at my home.  Another 2nd level supervisor showed up. She asked if the guy was usually on time.  I said that he just called me and said he'd be 15 mins late. He was 25 mins late. He, she, and the kids did ok. In manged to pull D4 away to let them all interact. Some drama,  but no door slamming.

After the 4 of them playing a game outside, they came in and my son wanted to show them a certain toy.  She asked him what he wanted to do next.  He ignored her. I stopped him and asked him if he had heard her question. He said that he did.  I asked him to tell me what she said.  He said he didn't know. I stopped him and told him to ask her.  He did.  She told him again.  He understood.  They transitioned with no drama. 

The doctors who diagnosed him noted in their report that I developed "games" with him to do this.  The Easter Seals intake supervisor also noted that I was doing ABA techniques to bring our son to the moment.  I get him.  I understand him.  I wasn't like him as a child, but I do get how he thinks.  In the above indecent,  I thought, "why am I doing this? They are the professionals!"

The first supervisor never answered an email.  She told us she was being reassigned.  The second supervisor emailed my ex to cancel this week.  They said they didn't have anyone available.  Two weeks now, our HMO pays 12 hours/week direct therapy, not counting the two supervisory levels, and he's had only 5 hours contact. This expires in September. 

Yesterday, my ex was contacted by the new supervisor (who was new, then wasn't, then is?) To say they didn't have a tech available. My ex reiterated the burden of us taking basically half days from work and also the mid afternoon times just as our son gets off school as being hard.  I live 5 mins from his school. My ex lives 20 mins, so he'd get out early 1-2 days per week on her time.  My ex told them to suspend services until we could get later times (4pm at least). I don't disagree with this. 

It isn't the Easter Seals, but rather a 3rd party provider they found. Our son is still doing great in school.  I still don't see a real issue here,  at least that I can't handle.  I'm also very frustrated about all of this.  I expect the experts to lead us, not the other way around. 

So I guess we're on limbo now?

[Sunfl0wer]

Oh man Turkish, I cannot make heads or tails of what the heck your kid is supposed to be getting in terms for treatment, that has to be insanely frustrating!

Random thoughts that pop up for me... .

My son got ABA in his school as his main issue was shutting down within school enviornment at about 7 yrs old.  They did wonderful with him.

Part of the initial process was observation in various settings within the school.  So I believe she picked like three settings to observe him in.  One was like the class he performed worse in, then the one he did best in, then maybe his OT treatment or some consults with the teachers and support staff.  From this she created a comprehensive Behavior Modification Plan.  We all had a meeting to discuss how this plan would work.  

She began by expressing common themes that she saw that caused the behaviors. (of shutting down). For my son, it was noise, change of rules in some classes lacking consistency, some sensory stuff that bugged him, demands of writing which caused him to feel like a failure, and certain communication approaches he could not tolerate.  

So then she discussed what worked for him like sensory breaks, certain approaches some teachers had that interested him and helped him to coperate, limiting noxious stimuli, maybe preferred seating options, maybe allowing the OT to review the lesson plans ahead of time to help anticipate possible things that could predict him feeling like he is failing then shutting down, so modifying the expectations to avoid a shut down to maximize his output.

So she came up with a list of stuff that "works" for him, then a list of stuff that doesn't.
She also had to identify what my son was motivated by in order to create the plan.  My son has a pet that he could talk about forever so she made him a chart and every time he performed a very specific behavior, he got a sticker for that and at the end of so many stickers, got to bring his pet to show off to the class.  So for his short term reward, he got like gummy worms, but long term got pet visits he loved.

She also had the teachers get on the same page to modify their behavior so that their demands and expectations were CLEAR and CONSISTENT.  So they had to send me emails of his work or else not hold him responsible for it cause my son lacked organization and executive functioning to be expected to track his own assignments.

It sounds like maybe you can ask if there will be an end Behavior Modification Plan?  And will they stay to assist and train everyone how to carry this out?
Maybe they are in the observation part of the process?
Or maybe they are too disorganized themself to tell you?

Idk, so while I realize that this is not the same in that your kid is not getting services at a school, however what IS the overall plan?  Will a Behavior Modification Plan be created for all or something else?  Cause at the very least, they MUST be following their own "Plan of Care" in order to treat him and they DO in fact have goals and milestones for your kid to achieve (this is necessary to provide any services) so maybe you can ask to see his Plan of Care if they don't plan on a behavior modification one.  Or (if they are odd about revealing ppwk) at least insist they verbally recite his goals to you that they feel they are providing intervention for.  ... .cause if they cannot tell you what they are working on in professional language and specific goals, then someone isn't doing their job!

[Sunfl0wer]

Just found this quick.
Below is an example of a goal, kinda shows a breakdown of how goals are supposed to be designed.  They are supposed to have specific criteria like "be measurable."
iloveaba.com/2012/03/writing-aba-programs.html

And it is NOT their job to watch YOU achieve the goals with your kid then document that, rather theirs to provide intervention (directly to the child, or indirectly via providing tools or education) to facilitate goal progress in some way.

[livednlearned]

I expect the experts to lead us, not the other way around. 

All of this stuff is so messy.

My son is labeled "twice exceptional" by the schools (gifted/learning disabled), which as far as I can tell, even in a well-resourced school district just means they don't really know what to do with him.

If S15's experience is typical: there will be exceptional therapists and counselors, maybe a handful of exceptional teachers, others will be duds. You'll know more than them. You'll educate them about your son. Some will tell you things that change how you see your child, they'll be that good. Each person will have a way of seeing your kid. Take what rings true, and when it doesn't, store it for a while and discard it if you think it's irrelevant.

Diagnosis or not, kids who are quirky tend to need advocates throughout school to help smooth out the rough edges.

If you were raised like a wolf  which is how I was raised too -- you may feel that all these diagnoses and services and blah blah is overwrought BS.

My advice is to relax into it and use the early dx as a dot on the map.

I use the 504/IEP process to bend the school to fit S15 and try to model self-advocacy for him.

The dx's are just names for the different ways he is quirky. The schools needs those names to be flexible in a system designed for efficiencies and mass testing, where everyone gets treated like the norm.

Chances are, your kid falls into the 20 percent that skew away from the norm. This can be really helpful once you learn how to work it.

[Turkish]

Dot on the map is a good way of thinking about it,  a data point.  

I received a log in which revealed an ABA matrix so we can follow it.  Given that we are 19 hours behind the alloted time,  I'm not sure how this is going forward. S7 will bond with anyone well. I understand the concept of S.M.A.R.T. goals. I've worked in corporate for 25 years  I also do failure analysis for a living. How to problem solve is in my blood. 

My ex told me they indicated they might switch techs. Great. She stopped by the house this morning to drop off kid stuff she forgot (3rd weekend in a row, I'm trying not to read much into it other than she being absent minded)

We talked about it.  I expressed my frustrations. I said that at this pace what kind of update would they be able to provide by September to our HMO which is paying for this.  She asked if we should just do this ourselves given the resources we know.  This is interesting since she pushed this.  I was tempted, especially given that they observed that I practiced some ABA techniques already (going on nothing other than my gut, but I've always been good with little kids).

Though there is stress at work about ba rumored layoff next month,  and the kids are on my insurance,  I have it for now and they're paying for it.  There's no loss on taking advantage of this.  The good thing is that the Dx is summarized and documented. Losing insurance, that won't go away. I scanned it into a pdf.

[scraps66]

I have learned that a child diagnosed as on the ASD is a "healthy" distraction for a BP parent.  It allows the emphasis to be on the child's behavior rather than on the parent's poor impression and parenting of the alleged child with ASD.  My S12 is diagnosed as autistic and my ex fought for that diagnosis as opposed to others such as ODD and anxiety and conduct disorders which from my perspective are more accurate.  The one piece that doesn't get factored in to the diagnosis is the parental environment around the child.