How to approach the new psychiatrist* Updated

[NorthernBeth]

I finally have an appointment with an actual psychiatrist that I get to meet with this week.  ( rather than the telepsych where he is being seen by a doctor who has never met himand is relying on information from about 3-4 years ago when we were having completely different issues. )   He is in our small town just for this week  ( It is like an Elvis sighting.)  He normally works in a biggger city about 5 hours away.   It has taken like a year to get this referral finally answered.  So I have like this one shot to get it right.

I was just pondering what to tell him and was wondering how to frame my observations/ questions.  I don't want to frame things  ( edit/ spin??)   so overtly that my foster son ends up with an autism diagnosis when he doesn't actually have one. But I do need the autism thing to be on the table and open for discussion at least.  I think he is probably right on the edge but not sure which side of the edge he would be on.  His therapist is 100% convinced he is on the spectrum.  His pediatrician is convinced he is not.  ( But therapist has worked with him more closely)   But there are a few other possiblities that I and others have speculated about  ( like bipolar or ODD).  But these might be a littlle more controversial to his birth family and First Nations community.  I know the ADOS is considered the "gold standard" but will it show the more subtle things we are looking at, rather than the obvious things?   I mean, he will not be standing in the corner, stimming.   He is usually excellent with adults.  He will be uber-polite and determined to be on his utter best behaviour.  Which most adults find super charming.  ( doesn't always go over so well with peers)  

 Do I go whole to part?   ( I think he might be on the autistism spectrum and here's why........)  Sometimes this gets doctors hackles up, but it is kind of my more natural approach to talking, as it gets right to the point.  The drawback is that sometimes doctors just kind of go-- uhm no .... and don't want to look at anything else.  

  Or do I go part to whole??    ( Here are some symptoms I am concerned about   :   ( item 1-1))   These symptoms have me concerned he might be on the autism spectrum)  This takes a lot longer and sometimes I feel like I am just kind of rambling on, and the forest is getting missed for the trees.   On the other hand if the doctor immediately thinks no way is this kid autistic, I am not even going to bother testing....  I want him to at least look at the symptoms we are dealing with  ( extreme anxiety, sensory processing difficulties, social difficulties, figurative language processing, emotional control ( eg aggression and self-harming issues)  even if they result in a more controvesial diagnosis. 

Is the weird up and down stuff about his IQ relevent or not relevent?? 

Can I write stuff up?  Is that too weird?? 

And then some small part of me is worried that I am "medicalizing" something that is just part of being a normal boy, and would be completely dismissed by different parents. 

Except, it seems to me like he is standing out more and more these days. Not in every setting but in a lot of them.  And I find myself picking up a book on autism and reading the stories and going , Oh my gosh, he does that, he does that too..   I thought he was just being stubborn.  I thought I was just a bad parent.   I didn't know other kids had that issue, too!!   

 I feel like I have been waiting a LONG time to get someone to listen to my concerns and DO something about it and I don't want to blow it!!  

So any advice on how to successfully handle this would be appreciated!

[Pawz4me]

IME with most medical professionals it's best to keep things as brief, succinct and to-the-point as possible. So whichever approach you take try not to ramble. Stick to pre-planned talking points and be prepared to fill in detail if the psychiatrists asks for more. So pretty much whole to part is usually my approach. And I also think writing things down is fine and even good. If nothing else you can use whatever you write to remind yourself what you want to mention. Again--I'd do bullet points (maybe in bold) and add more detail below each one if necessary. So if the psychiatrist looks at it she can focus on the important points first and read (or ask for) details as needed. I think this wording is good: "I really wonder if he could be on the autism spectrum.  I think he is probably right on the edge but not sure which side of the edge he would be on." That should definitely be taken seriously, and yet it also clearly indicates that you're being reasonable/not trying to diagnose him.

Good luck!

[kbutton]

I would make a list. I think that letting the doctor know what information you have available (your own observations, previous reports, etc.) is a good idea. Tell him what concerns you most. Tell him that you want to be as broad as necessary to get an accurate diagnosis. Tell him that whatever his findings include, you see enough overlap in the autism books that you want therapy/supports to be targeted to areas x, y, z (probably the things that make him stand out?) because it seems so applicable. 

I think that asking for help on the things that seem off to you is super valid, whether or not he ends up with a diagnosis. 

[PeterPan]

Well it's exciting he's going to be seen! This is a p-doc (psychiatrist) or a psychologist? If he's not trained in the ADOS and planning to do it that first day, first thing, then he's not doing the ADOS. Just being a psych or pdoc doesn't mean they are trained in it. And unfortunately one hour or session probably isn't going to clear that up. How old is he? He definitely sounds like he's struggling. 

Say this pdoc says yes, pursue fuller evals, what is your path? Do you have resources in your area? He sounds like he would benefit from a variety of interventions. 

I can tell you that the psych we saw who specializes in ASD did not want to put ODD down until he's had more ABA for a year. Might be something to consider. It's really not helpful to get a diagnosis of something partial and miss the overall picture. And yes, I think it would show if you did the ADOS. He would be with a total stranger in a new, unfamiliar situation being given challenging tasks that are intended to provoke the behaviors. My ds can be surprising and charming, but it showed on him. He's a certain way with me at home, but put him with the fresh person, fresh situation, and it's there all over again. So I would not be afraid to do the ADOS, no. In fact, I found it enlightening, because it really cut out all the stupidity of did I notice it enough to mark it on a form, can anyone else see him enough to mark the forms, did I understand the questions on the forms, on and on.

In a total rabbit trail, I will tell you that doing genetics on my ds was astonishingly helpful. I highly recommend it to you, especially when you've got significant behaviors where medications are on the table. Some of the things we found were so innocuous but so life-changing. For instance, he has a defective Vitamin D Receptor gene. Vitamin D affects methyl levels, which has helped stabilize some of his aggression that we theorized was due to overmethylation. We found other things, like a defective step in making 5HTP, which leads to melatonin (hello, night owl) and serotonin (anxiety anyone?). A number of pieces like that, and I'm STILL learning more. I was digging more today. I'm hoping I can find something about dopamine and how to chill his impulsivity, because he's not a good candidate for stimulant meds. 

I don't think genetics is necessarily something p-docs are up on, though maybe? It's all new to EVERYBODY. But me, I was really struggling with how to get the aggression curbed. We really didn't want meds, but it really had to WORK.

Don't be afraid to say things straight. You're not gonna spin it to make a diagnosis happen. What you don't want is for you to be so scared to say it that he blows you off and you don't get the diagnosis he needs to open doors. I let my ds' first psych do that with me. I said he flaps like a bird, and the psych had some excuse. I said he recites paragraphs from audiobooks and the psych had an excuse. Evrything had an excuse or a way to blame me. Well that guy was arrogant and wrong. Three psychs and an ADOS later, everyone finally agrees. God himself has put enough stamps to shut the mouth of that first guy. 

There's no need to be quiet. You're SEEING it and you want that guy to see what YOU'RE seeing and not miss it. Unless the guy is trained in the ADOS, which allows him to sort it out in one hour, he needs your input.

[NorthernBeth]

9 hours ago, PeterPan said:

Don't be afraid to say things straight. You're not gonna spin it to make a diagnosis happen. What you don't want is for you to be so scared to say it that he blows you off and you don't get the diagnosis he needs to open doors. I let my ds' first psych do that with me. I said he flaps like a bird, and the psych had some excuse. I said he recites paragraphs from audiobooks and the psych had an excuse. Evrything had an excuse or a way to blame me. Well that guy was arrogant and wrong. Three psychs and an ADOS later, everyone finally agrees. God himself has put enough stamps to shut the mouth of that first guy. 

There's no need to be quiet. You're SEEING it and you want that guy to see what YOU'RE seeing and not miss it. Unless the guy is trained in the ADOS, which allows him to sort it out in one hour, he needs your input.

Yes, this.  I tried talking to a speech pathologist here  ( who seem to be one access point to getting assessed in Canada) and said well I think he has echolalia, and she said, he is trying out new language.  I said he struggles to understand jokes and figurative langauage, and they said he was delayed and those things are hard. 

I talked with the pediattricain about how hard we had to work to get eye contact when he was younger, and all his issues with reading emotions.  Like he would literally granfcutebvubjefg8b a strange kid at the playground in a hug and take them down the slide with him.  The other child would literally be screaming and crying and he would be completely oblivious.  I would have to say, See those tears coming down her face.  Hear how she is crying. That means she feels sad.  That means she didn't like going down the slide.  We have to ASK a friend if they want to go down the slide.  AND WE WOULD DO THIS OVER AND OVER AGAIN.  And the professionals are like:  he can read emotions on people's faces.  And I am like , yes, because we worked like CRAZY on it, becuase he was so clueless and so much bigger than other kids his age,  that strangers would just perceive him as mean, instead of baffled.  I can't tell you how many playgrounds we lilterally had to FLEE from when he was younger because he had accidentally frightened some kid and pissed off some parent.  And yet he totally didn't get it!!!! Because he liked going down slides and he was not afraid of strangers, he totally did not understand how anyone else could feel that way.  

But if he is in a new situation that doesn't just require him to "be good" by being polite, then he often needs a lot of prep to be okay ahead of time or a lot of debriefing afterwards.  Which I think is what has led to him being afraid to leave the house. 

And I only just realized that he stims.  Because it wasn't the obvious stims of hand waving or spinning.   But he will bite his lip over and over until the skin is raw.  Or bite the edge of his shirt until his shirt is torn.  Or jump up and down when he is upset.  Or bang his head over and over.  And I thought of this as self-harming  behaviours and didn't realize the repetitive nature of them would also mean they classfiy as stims.  So when people have been asking me if he stims and I have been saying no, I suddenly just realized last night as I was trying to research the difference between the new Pragmatics Communication Disorder and ASD that the big difference is STIMS.  And as I was reading more about stimming, I suddenly realized a lot of his behaviours would count as stims.   

Anyways-- new guy is a psychiatrist-- only one in this area for 5 hours around unless I go out of province.  He knows nothing about us so he won't do the ADOS the first day, but possibly he might do it the next visit?  Or arrange for it to get done by someone else?  Or even just help us with the behaviours? And the extreme anxiety?  Any maybe prescribe a different medication because the one med they have him on is causing him to gain weight fast!  So even if he didn't do the AOS, yeah he could be a lot of help.  I would love the diagnosis because right now people just seem to think-- huh, he is kind of weird  or why is he being so bad?  and they don't get how much he doesn't understand about social conventions.  And as long as he is with adults he can totally just do the "I will be quiet and polite" routine.  But that is not really HIM.  That is just him trying hard to be good, so he is literally just standing  there not doing ANYTHING so he doesn't get in any trouble.  

[Pawz4me]

FWIW, and I don't know if this is true everywhere or not, but -- DS saw a psychiatrist for his anxiety. This was before he received his official ASD-1 diagnosis. He was 16 at the time and I'd been about 95 percent sure he was on the spectrum since he was a toddler. But everyone back then (his pediatrician, speech and occupational therapists) all said no, he couldn't be. He made eye contact, he talked, he was cooperative, he was too affectionate. He was getting the therapy he needed anyway and I didn't see any major benefit of an official ASD diagnosis for him (he's very high functioning) and so I didn't pursue one at the time. But when he reached his teen years anxiety became more and more of an issue. His pediatrician believed (and I totally agreed) that medication was needed, but the pediatrician didn't feel completely comfortable managing that for a teen and referred him to a psychiatrist. We had to wait four months for her first available appointment (in the meantime the ped did prescribe and work on dosing of an SSRI). After seeing him several times the psychiatrist told me, w/o me having ever mentioned my suspicions, that she was positive he was on the spectrum. But we had to go to a psychologist for the ADOS and other testing to be done. The psychiatrist said she could make a medical diagnosis of ASD-1, but for the psycho-educational testing and a diagnosis that would get him any educational accommodations he might need we'd have to see a psychologist. As far as I know the psychiatrist didn't do the ADOS or anything like that, but based her medical diagnosis on the things she saw from interacting with DS over several appointments. I don't know if she would have eventually done the ADOS or not had there not been psychologists in our area to do it.

[PeterPan]

I'm sorry you're in Canada. Can you cross the border? He sure sounds like he's on the spectrum, and waiting is keeping him from interventions. Yes on the medical diagnosis vs. psychologist doing full evals. 

I would assume it's ASD and work your system to get access to services. Some parts of Canada seem to do really well, so see what your province offers. You want EVERYTHING. Get those doors open and get it going. Assume he's on the spectrum and starting fighting to get him access.

On the anxiety, really meds are such a mixed deal. I'm not anti-meds, honest. However we ran genetics on my ds, and there was an actual, treatable explanation. He has a defective gene for making 5HTP. You give it to him and he's super zen. I've been taking it myself and it's the bees' knees. It's only $69 on sale to get the testing with 23andme...

Just see how it rolls. What supports will you have locally if it's autism? What doors open? You get funding? Access to services? A coordinator? 

[NorthernBeth]

I am really off in the boonies in our province-- like literally the road ends and after us you kind of have to fly anywhere.  There is a psychologist who comes up every other week from a near-by town, but he is only supposed to deal with the Far-North First Nations kids.  Since we have moved to town we technically don't qualify.  There are a lot of "therapists" that do addictions work at the hospital but I don't think they are qualified to do the ADOS.  I honeestly don't know if anyone in town is or if we would have to go to an out-of-town place.  I can't cross the border easily with a foster child  ( also about 5 hours away from us) .

I am honestly not sure what doors will open with autism diagnosis- possibly more help at school ( now that he has been ordered back to school).  People ( including his case worker) understanding that he is not just being "bad" but honestly is struggling with things.  Less of a punitive stance and more of an understanding stance.  Actual services--- who knows ?   He is 11 and the pediatrician keeps saying well he won't qualify for ABA- and I am like ,  Yeah, I GET that, but I don't really need ABA, I need someone to help me work on social skills-- ESPECIALLY in the school environment, because I am not there to interpret things for him.

 Because he can't explain things very well, but just kind of comes home sad because no one played with him at recess and he can't quite figure out how to get into the play that is happening around him.  But he would never complain to the teacher.  And since he isn't complaining, everybody just tells me that he is doing fine.  Then he comes home after school, and plays his videos games frantically, and when it is time to get off, starts banging his head over and over.  ( which was not happening before we transitioned him back to school) 

So I need the school on board that even if he is being "good" for them, he is really struggling and very unhappy.  And in the past, the schools just say stuff like " Well, he needs to learn to speak up and tell us this stuff."  And I am like, "Yes, I KNOW that.  But he finds that VERY hard to do."  So they don't want to do anything because they just seem to go well, it is all on him,  if he is having trouble but doesn't tell us, we really can't do anything.  Except they could do something-- they could set up peer play at recess or debrief him after recess or take him aside a few minutes before recess to go over how to enter play situation, etc.   And I haven't wanted to complain about anything at the new school as he had only been there about a month.  But the fact that he is suddenly head-banging tells me,  he is stressed out guys.  Help us by making school a little less stressful!  

And once he turns 12 here-- as a foster kid-- if you start having self-harm type issues, they just want to yank him out and stick him in one of these big group homes which are kind of more like mini-jails and I have seen so many kids go downhill in those places and commit suicide quite frankly.  So it isn't even what I can get--  it is more what I am trying to prevent.  A lot of kids end up in homes or in jail here.  It is so crazy!!!   But hopefully if they think "autism" rather than "bad", we can get more help.   Because I want that on his record, so if he ends up in a bad situation, it is on record for a judge or someone to see.  Because he can really misread a situation and as you get older that can be really dangerous here.  And he comes off kind of "innocent", KWIM?  Some bullies are really drawn to that ( at least they have been so far!)    And he may just stand there and take it.  ( which is what he mostly did at his old school)   Or at some point, he may get very tired of taking it, and then he may respond with a LOT greater force than expected because he doens't get it.  All those unspoken rules for boy fights?  He does not get those!!

But I also think I may be able to re-access OT and hopefully get the school more on board with the fact that he needs more help with the social stuff than they are giving him.  It is just super hard to get services here-- you have to push and push and push. ( with everyone, not just the schools)   And it is very hard to find out what is available--- it is so different from where I grew up where everything was advertised and they WANTED you to come use their services because you were keeping them in business.  Here, mental health issues are rampant and everybody is swamped.  So they only want to deal with you if you are extreme!

Also for me, quite frankly, the diagnosis helps me figure things out on my own which is mostly what I am trying to do anyways.  Like I said- when I suddenly realized that some of his annoying or disturbing behaviours are actually stims, it was like a light went on.  Of course I can't get him to stop if it is a stim.  But I can re-direct, I can plan,  I can help him substitute a more acceptable stim.  Instead of just trying to REASON with him, which is what I was doing. ( and was totally not working)

 Because the ADHD dianosis-- it is not enough, it really does not cover some of the stuff we are seeing. I think the ADHD is making it worse, and actually I think it helped mask a lot of this stuff for a lot of years, because he was just SO busy, he was like the roadrunner, never slowing down.  And then we put him on Concerta and he slows down and suddenly there is this whole layer of other behaviours that we are dealing with.  And it is just eye-opening. But nobody wanted to deal with it when he was younger. 

He is already on an anti-psychotic which was working great to help control aggression.  But he is putting on weight like crazy.  And he doesn't want to run around anymore.  And his anxiety went through the roof.  So maybe a different med would help?  But the pediatrician, she really does not want to touch it, she is very nervous about it and really wants someone else to make the decision on this one.  

I am interested in what you said about the 23 and me thing.  I just don't know if doctors up here will really deal with this-- and I can't go off on my on.   Thank-you for all the interesting information though.  I had just been looking into that area for myself to see if it might help some of the health issues for myself.  

Thanks for responding to my post.  As I find myself thinking about this and clarifying things, it gives me a better sense of what is really worrying me and what issues are really priorities that I need help with regardless of any diagnosis.  

But a diagnosis would still be nice.

 

[PeterPan]

In the US, he would get ABA. He sounds like his language is significantly impacted, so he might even get an ASD support level of 2 in the US. 

I'm sorry it's hard. :(

The stimulant meds for ADHD are methyl donors. If he has COMT gene defects, he won't tolerate methyls well. If he's low in various things like vitamin D and 5HTP that use methyls as part of the process of doing their thing, he could also have overly high methyls and be aggressive. That's what we found with my ds. The first thing we tried with my ds, pursuing the overmethylation theory, was niacin. It's cheap, not expensive, and it let us see right away yes it works. Then, when we knew the overmethyls were causing the aggression, we started looking for more things that use methyls and see if he was low or needed more. 

Yeah, genetics with a doc would be hard. They could run vitamin D levels. That's pretty traditional. 

Ok, it sounds like the self-harm has huge consequences. So I suggest you start a thread on it here on LC and also use the google site search. Put some energy there. Self-harming is a known gig in autism and there are known things to do about it. My ds is not super, super severe with it (no head banging, etc.), but when he does it he's usually stressed. So then he needs a replacement for the sensory and better stress techniques. I'll offer him something else he can chew for sensory or try to get at the root of what is stressing him. You have a child who is struggling with language, so he may be feeling things he can't express. Some Zones of Regulation work might be FABULOUS with him. He needs help to understand his emotions, where he's at, and make choices. And what he can't do for himself just yet you can prompt. I agree that sounds dreadful if he had to leave because of it. So much better to get figured out and bring in supports. And working on that will probably help other things (academics, etc.) do better as well.

Does he do any kind of mindfulness for stress? He could do Sitting Like a Frog (tracks are online for free), or you could teach him to do body scans. Or, if it's too complicated for him to do it himself, guide him by having him close his eyes and identify and describe how parts feel that you touch, sort of guided mindfulness. Just 10 minutes of mindfulness will bump EF by 30%. Maybe if you could do it morning and night you could head off some things. 

Usually with stims you are replacing them with something equally intense but safer. You can redirect, like you're saying, but there are other strategies. And your ped is totally wrong on the ABA thing. If he were in the US he'd get ABA, absolutely.

Well keep us posted on how it goes with the psych! If he could get you a referral for some kind of OT by skype, that would be amazing. Or ABA by skype? Just start asking for the moon, kwim? Your ped is so, so wrong. Don't be afraid to ask for those professionals, because something would be better than nothing at this point. 

[NorthernBeth]

• Just to clarify- he has the language skills to express his needs.  He just doesn't seem to have the emotional skills to express his needs.  This is why I am worrying about ASD rather than just ADHD.  You know, we were doing a lot of calming stuff with homeschool.  It has been very hard to do anything with him that we did while we were homeschooling because he feels it is super-unfair because he is already doing school.  I will have to think how to get this going again.

[PeterPan]

6 hours ago, NorthernBeth said:

...Because he can't explain things very well, but just kind of comes home sad because no one played with him at recess and he can't quite figure out how to get into the play that is happening around him.  But he would never complain to the teacher.  And since he isn't complaining, everybody just tells me that he is doing fine.  Then he comes home after school, and plays his videos games frantically, and when it is time to get off, starts banging his head over and over.  ( which was not happening before we transitioned him back to school) 

...  But the fact that he is suddenly head-banging tells me,  he is stressed out guys.  Help us by making school a little less stressful!  

...All those unspoken rules for boy fights?  He does not get those!!

...when I suddenly realized that some of his annoying or disturbing behaviours are actually stims, it was like a light went on... 

 

How is he with narratives? Also, you might look at the CELF Metalinguistics. It will hit inferences, conversation, etc. and give you some ideas on where he's struggling. Yes, they'll run the Social Language Development Test, the Test of Problem Solving. Even if you can't get these tests run, they would give you ideas of where some of the language deficits are and why he's having trouble. It's everything you suspect. He has to understand how others feel, understand how he feels, problem solve, use his language, it's just everything. 

If you're on FB, you might look up Zones of Regulation and Interoception. Both groups would give you good leads. The guy who does Autism Discussion Page on FB just made a post on self-harming behaviors and how to deal with them. Free help there. :)

[NorthernBeth]

i will check on those facebook groups.  I am not sure if his school does Zones of regulation or not. 

His narrative skills are weak.  The SLP and I were working on those and the place she works at just bought the Test of Narrative Language, so she just administered that, but I have no results yet.  He could answer questions about the story, but he "retold" the story in about 2 sentences, so obviously missed a lot of details!   She already ran the SLDT, and he had problems with seeing other people's point of view, and developing solutions that solved the concerns of both parties.  She told me he came off "average" in a bunch of areas we worried about like reading emotions and figurative language.  but when we looked at the scores they seemed like they must be at the very bottom range of average quite frankly.  

I keep going back and forth about whether my concerns are valid or whether I am focussing too much on his faults.  Sometimes he seems so normal, I feel like I have just been worrying for nothing.  Case in point:  we got invited out to dinner at a frined's place.  The dinner guests included his daughter, and two other girls , all of whom my son grew up playing with and I would conisder some of his closest friends from our old town.  ( They are actually all cousins of his in one way or another!!)  They played downstairs for a long while, and I thought,  See, nothing is wrong, everything is fine, he just needed to be around kids he is comfortable with!!! Right?   

Then we called them up for dinner, and the kids all sat on the floor to eat.  Except my son.  He stood behind my chair, not talking to the other kids, while fiddling with my hair!! It was a strange moment.  And the hostess is kind of eyeing us anxiously and wondering how to help, and it was just intensely awkward.  Then the kids went downstair to play again and we were having a wonderful conversation with the parents, and the other couple, and I was relieved at how normal everything seemed again.  I am worrying for nothing.  Everything is fine!!!

Then the other set of parents started talking about the weirdness of the video game the girls were playing. My husband and I immediately tensed up.  We were like, oh no,  he would hate that, he would feel scared.  Sure enough, five minutes later I see the top of his head peeking up over the stairs and he whispers, can we go now?My great big giant of a boy who looks like he should be tougher than nails.   I put him off and tell him we will go soon.  5 minutes later, his head is poking up again, and I realize I need to get him out of here, before things escalate.  Cause you know,  they WILL escalate, if we don't act on this fairly quickly. He is perfectly capable of trying to physically pull me out of a room if he gets really distressed.

  We get into the car and ask him how it went to see his old friends.  It turns out he never played a single time on the video game.  We were there for 2 hours!! The girls never offered him a single turn.  He never asked for a turn.  He just sat there, watching them play. And my heart kind of broke.  I mean, I suppose it could just be a girl thing.  But these are some of his oldest friends!!  Maybe it would have been different if it was the boy cousins.  But we just felt so sad.  Cause in the middle of us feeling like he was perfectly normal and so glad everything was going well-- he was unhappy and lonely and isolated.    

But you know-- not flapping in the corner or anything.  Not aggressive.   Just there........ and not playing with them.  

Sigh.

I am off to investigate the facebook groups.  

[kbutton]

The ups and downs of "he's fine" and "whoa, that's not typical" are very, very common. You are not imagining things. Hang in there!

What you are saying about autism and SN in Canada explains so many things I've seen about attitudes from an expat mother I know, lol! She has some really interesting ideas of "fine" and what constitutes learning issues. Wow. I hope you will find some open minds and open people who can advocate for your son alongside you.

[NorthernBeth]

14 minutes ago, kbutton said:

The ups and downs of "he's fine" and "whoa, that's not typical" are very, very common. You are not imagining things. Hang in there!

 

Thanks for the encouragement.   Last night was just such an encapsulation in 2 hours of his 2 extremes.  People who have never seen him in meltodwn or in his social avoidance mode just can't picture what I am trying to explain to them.  

[PeterPan]

You'll definitely drive yourself crazy with the whole fine, not fine thing. Remember how up this thread I said you had language issues and you're like nope, no language issues? Well the SLP is running the TNL, and you're finding them with self-advocating, with all kinds of things. 

I hope the psych is able to do something to help you get you there, get you a diagnosis, get you qualified for whatever else you can get access to. 

As far as the flapping in the corner, maybe you sorta have an impression that autism looks like only ASD3? It's really different from maybe a level 2, hanging but having difficulties or a 1 who blends in sometimes and sometimes doesn't. Your ds is doing some really good things with self-advocating there though. You've done some really good things, because he asked to leave and you did it. You didn't say no, we're here, suck up, kwim? So he trusted you that his words would have power, and you helped him solve his problem. That's really, really awesome and shows what good you're doing. Like when it feels like you're in a sea of things NOT working, I think you can also notice the things that ARE working because of things you've done so far.

Keeping doing 'em, keep advocating, keep fighting for services and access. You can't make the world perfect. You might make a list of 3 things for this coming year that are like ok, if we could get these THREE THINGS going, they would unleash a lot. That way you have some priorities, kwim? Then you can use those to help you decide where to push your therapy efforts. Now maybe you'll have to roll with what you have access to, but still I'd still think through 3 goals, three things that would make a huge difference and be pivotal. If you can't get paid help, then you have your hit list to come on the board and ask for help with. :)

[NorthernBeth]

4 hours ago, PeterPan said:

You'll definitely drive yourself crazy with the whole fine, not fine thing. Remember how up this thread I said you had language issues and you're like nope, no language issues? Well the SLP is running the TNL, and you're finding them with self-advocating, with all kinds of things. 

Yes, this.  He came home today from school, soaking wet from jumping in puddles at recess, and having soiled himself, all at first break ( which occurs at 11:00) and he NEVER asked for help.  Just sat there all day in that mess.  His feet were white for lord's sake.  I was actually checking him for frostbite, just in case, as we still have snow on the ground here.  

I just got back from talking to his teacher and arranging an after recess check-in so this doesn't happen again.  She confirmed that she also sees signs of autism and will write up a letter documenting what she sees in the classroom for the psych meeting.  Then I got in the car and drove around crying for a bit.  

I hope the psych is able to do something to help you get you there, get you a diagnosis, get you qualified for whatever else you can get access to. 

As far as the flapping in the corner, maybe you sorta have an impression that autism looks like only ASD3? It's really different from maybe a level 2, hanging but having difficulties or a 1 who blends in sometimes and sometimes doesn't.

This is the funny part.  I was aware there is a range but it seemed like his pediatrician and the tele-psych didn't.  I mean, he was literally crawling around the floor and climbing into my lap ( all 160 pounds of him)  and she looked me in the eye and said there was no way I could get a diagnosis of ASD.  And I was thinking, really??? Like it is not even a consideration??? And the tele-psych dismissed it because "he smiled" and he was "very warm"  That meeting ended with him trying to fight us for the cell phone and also crawling under the table.  And yet every description of aspergers/ ASD1 sounds SO much like him but the professionals kept telling me no, no, no.  If it weren't for the therapist encouraging us to pursue a diagnosis I would have given up by now. That's why I keep doubting my observations.  

Your ds is doing some really good things with self-advocating there though. You've done some really good things, because he asked to leave and you did it. You didn't say no, we're here, suck up, kwim? So he trusted you that his words would have power, and you helped him solve his problem. That's really, really awesome and shows what good you're doing. Like when it feels like you're in a sea of things NOT working, I think you can also notice the things that ARE working because of things you've done so far.

Thank you. we have worked SO HARD on self-advocacy this year.  He has made a lot of progress.  I never realized it wouldn't carry over into the classroom!!

Keeping doing 'em, keep advocating, keep fighting for services and access. You can't make the world perfect. You might make a list of 3 things for this coming year that are like ok, if we could get these THREE THINGS going, they would unleash a lot. That way you have some priorities, kwim? Then you can use those to help you decide where to push your therapy efforts. Now maybe you'll have to roll with what you have access to, but still I'd still think through 3 goals, three things that would make a huge difference and be pivotal. If you can't get paid help, then you have your hit list to come on the board and ask for help with. :)

Thank you again.  I can do this.  Regardless of diagnosis, regardless of help, I can do this.   I think we have seen so much progress this year, we have maybe been in denial a bit?  And then overwhelmed as we see again how hard this is for him, once we put him in a new environment.  

I honestly think i might be going crazy if I didn't have you guys here to bounce ideas and frustration off of.  This has just become more and more isolating over the last few years.  And reading books can only take you so far.  Sometimes you need real people!!!!

 

[PeterPan]

Interception is something to look up. It's the combo of self awareness of how you feel and the language to get it out. It's toast hence the frozen feet. It's something you can target. Mindfulness helps. Mightier software is good.

Keep going. 

Ps the how hard this is for him is support level. He might be more like a 2. 

Yes it hurts every time you get a new twist, new diagnosis, new element. It's like more knives stuck into you. It's ok to grieve, sigh 

Good luck on the IRL support thing. We do pretty well with kids with serious ADHD. Might be another community to look in. 

The self advocating at school might need instruction on how and supports from the teacher. Zones check ins would be appropriate. Sounds like it's also a safety issue for him.

[NorthernBeth]

Okay so long 3  and half hour appointment today which I totally was not expecting and ds was trying to push me out the door after 30 minutes!!!  Oh yeah, and he found a disposible razor I didn't know I had in my purse and I had to wrestle that away from him during the appointment which was a lot of fun.  I mean he was really off today.  

Also, not the actual psychiatrist but his intern.   Sigh.   It is so hard to see an actual doctor here rather than the interns.

After a really long time talking to me and ds ( which included long parts in which son was hiding behind me on couch with pillows over his face)  , the lovely intern goes on his explanation about how this sounds like it is all related to trauma from his infancy to 3 years old.   And I am sort of dumbfounded by what seems a very freudian interpretation to me.  I attempted to kind of question this and push back a little bit, and he also discussed NVLD.  He also explained why a few of my answers made him think it couldn't be ASD .  LIke ,   ds is able to ask a store clerk for a game he wants and he wouldn't be able to do that with ASD??   oh and because when he was trying to push me off the couch so we could go, he kept chanting how he wanted to go now, and I had to keep saying that was not one of the options right now, but he could go and get a pop and watch TV if he wanted.  We went around on that theme over and over again for at least 10 minutes until I physically moved away from him and across the room, so he would stop pushing me.   The intern thought this showed great signs of negotiating on his part???????  Uhm.... really??? when I was the one offering all the options????

Then intern went back and talked to the real psychiatrist and they talked to ds a lttle while alone.  Finally both docs came back and said they will see us next month and run the SCQ ( don't know what that is)  and the ADOS.  I dont' know if real psychiatrist overruled the intern, or if they are just being nice and ruling it out for me to be on the safe side.  I feel drained and overwhelmed.

Meanwhile teacher gave me a letter to give to psychiatrist,  said a bunch of stuff that made ds sound like he was behaving even more cluelessly than I thought in classroom and included a phrase about him lacking empathy which made me bristle a bit, but she said it didn't mean he isn't kind  ( but couldn't quite explain what she did mean).  She doesn't come right out and say but it screams ASD to me.  The therapist we worked with gave me a letter for psychiatrist, which literally states that she believes he has ASD and lists the reasons why and asks him for his opinion of this idea.   ( I only just read her letter as it was sealed when she handed it to me, so I didn't get to read it until after the meeting)  I assume now that I am reading this letter that this is probably why the psych. is doing the ADOS. But I am also assuming it will be intern administering the ADOS and I am a little concerned about how that will go with his "early childhood trauma"  theory.   ( which will obviously get us no support at school) 

Okay, so am I  being...... I don't know --- being close-minded that I think the infant trauma theory is a bit obscure??? Or is he just being a bit overly theoretical because he was an intern?  It was such a weird meeting and not at all what I expected.  The funny thing is, I know they decided to do the ADOS,  but somehow it feels like they are just doing it to humour me.   It is like I won, but I lost.  I really just want some help figuring out what to do next and would like to have a diagnosis for the school so we can access some funding for an aide and have a legitimate reason for modifying his expectations.  

I'm not sure if I am wanting sympathy or your opinons?  Just sort of baffled. Has anyone else heard this theory???? He came to us when we was about 18 months old.    Is childhood trauma likely to cause rage and aggression issues not at the time, but 6-9 years later???? Am I just dumb????  I don't know what to think.      

 

[PeterPan]

Well did he have trauma? I mean it's always a valid question. Yes, there's something called pre-declarative memory, and so he could have sensory memory, etc. from trauma in that birth to 3 years and have sensory memory but no declarative memory. I did. You do trauma release exercises for it. There are some books and methodologies. That has nothing to do with whether he's on the spectrum or not.

Yes, it sounds like they could bungle the ADOS. Do you ahve options? Can you travel and get someone else somewhere else to do it instead? Someone who does more autism? Because frankly, the more knowledgeable you are about the ADOS, the better you're going to do it. It's not idiot-proof. Yes, you are correct they could screw it up. I wouldn't want the intern to do it, because the intern doesn't seem to understand autism enough to know what he's seeing. S/he's unqualified. There's an actual certification process for the ADOS, so you could call and ask who would be administering it and whether they're certified. If the psych is certified and hasn't met him and the psych would be the one doing it, that might be ok. 

[NorthernBeth]

There has certainly been a lot of trauma in general around his family.  Obviously, being removed from family of origin is pretty stressful for a child no matter how young.   I don't know of any specific abuse or anything that happened.  ( Let me clarify to say abuse is not why he was pulled from family. )  Unfortunately, I don't have a lot of say in who does the ADOS.  I may try and talk to our therapist.  I think she knows the psych personally and can maybe tell me if he is certified.  I assume so as he mainly seems to be the testing guy for this area.  They said they don't usually do follow-ups but were in this case because they felt it warranted more attention.  I would be okay with the psych doing it.  He looks like he has been in the field for a while, and people seem to speak of him pretty highly around here.  If worst came to worst, I might be able to do testing in my hometown in the summer time.  There is a guy who does testing for about 1500. But if I already had one doctor tell me no, Children's services may look down on me contuining to pursue it.  However these are the same people who told me it was fine when he was 2 and a half and only spoke about 15 words, so I am kind of used to them not being too supportive of services.  Meh.  I just feel tired.  Well I have a month to sort it out I guess.  

[PeterPan]

When people talk trauma for therapy (like the Levine trauma books), they usually mean a near death experience. It can be something a small child *perceives* as being life-threatening, or it can actually be life-threatening.