I am sorry for the drama. I'm taking a break for a while. Thanks for the advice ladies.

This is helpful.

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I can understand that. I honestly have listened to talks before that were mixed helpful and unhelpful and this one, at least this week's talks, are all unhelpful. They were so focused on kids who are behavior problems because they are bored in class and how we need to ask their teachers to test them out of parts of the curriculum and let them do projects in the back of the classroom. And I see ADHD or even straight up gifted with asynchronous development being the main "quirk" that seems to be the focus. Guess I just see my asd kids as quirky, so I thought there would be more substance to the talks. maybe for a lot of parents watching, it's eye-opening stuff, but I already opted out of the system that couldn't meet my kids needs. I am hoping the talks next week on executive function are more helpful, but I'm not gonna hold my breath.

I see your point. And yes, I love focusing on strengths, we often have discussions about what "our superpowers are" at the dinner table, since we all have areas we struggle and areas we excel. I suppose I was mistaking the point he was making to be only focusing on strengths and never work on deficits. If I had been able to see the entire interview maybe that would have been clearer. I agree, balance and moderation are important!

The first video was on whether we should fix what's wrong or scale what's right with Jonathan Mooney who I don't know but he apparently wrote a book and is dyslexic. I'm kind of grumpy that you have to pay to watch the entire thing and it's honestly frustrating me because most of the conferences like this give you the whole interview but that's not the point of my post...he makes an interesting argument - a quote from his book was given: "I didn't have a disability, but experienced a disability in an environment that could not accommodate my differences" he then went on to say that "disability is a social construct" or something along those lines. His point was to get you thinking about what it means to thrive, and how to focus on strengths rather than weaknesses. I feel like a lot of our conversations on here are based on how to remediate weaknesses, and while yes, I see the argument for ADHD being more pertinent (let the kid move etc.), how does that fit into something like autism, when the social, language, fine motor, narrative (etc.) deficits really have an impact on a child and it's not simply "accommodating" for their sensory needs, or need to move, or what have you. I feel like dyslexia, too, is something that while you can capitalize on strengths, you also have to focus on the disability and remediate it. Because reading is just that important in life. So while it may be a social construct, so is society and there's not actually that much wiggle room for differences and if we want our kids to hold jobs and be independent, we have to focus on the disabilities too? Am I missing the point somewhere?

I've been watching mindwings webinars, and pondering how narrative language really fits into so much of life. A lot to digest, ponder, and figure out how to adjust. I'm also realizing how important self-regulation is to the process and putting that priority on top of our list each day. We've been working through the book Breathe Like A Bear by Kira Willey and everyone is loving it, especially when I bring my own interoceptive comments into the picture and make them all laugh! I also love how my son was able to tell me today that he's not looking forward to grandparents coming this weekend "no! not this weekend! It's always crazy when Gramps comes!" with an alarmed look on his face. So we talked about ways we can have calm, and set up a quiet closet space in an off-limits room so he can be alone and quiet and calm whenever he wants.

yes I can see how this makes sense.

That's exactly where we are - we are working through the interoceptive curriculum and actually it was for anxiety and self-regulation that we ended up at the right office to have someone see the autism and evaluate for it. So those are our priorities, for sure. I was just thinking about narrative language as I processed the strengths and weaknesses and realizing how much her speech (communication) is impacted by narration rather than necessarily a speech delay (which she didn't have as a child - although she lost language between 15-18 months... her first words disappeared and then she gained new language a few months later so no one took it seriously.)

Thanks, looks like that's a good next step for her.

usually the narratives that are like scripts are when she expects to be in trouble. Anything else (even other what just happened or something I just read type stories) are disorganized. So emotion plays into it, but I wonder too, if she's maybe missing the connectors- cause and effect, or why she might be in trouble, and so she's replaying everything like a movie in her head. I do know that she is clueless when a sibling gets upset with her. She never knows why she upsets people and feels like a failure when as the oldest, she's the only one who can't "play right". So theory of the mind is a real weakness that we are trying to work on. I suppose it's like her disorganized narratives are her trying to pick what we will want to hear, (an attempt at main points/organizing a narration?) and her scripted/over-detailed narratives are when she is upset, afraid, and wants us to have every single detail to know how to best handle the situation, rather than attempt to filter the important stuff and get that wrong.

May I jump in with a question? My 11 dd was just diagnosed with asd and it's making so many things click with her but I can't figure out where I am with narrative language. She has this mixed ability, and I need to think through what level she's realistically on, but when she's just telling us a story, it's usually confusing and requires multiple questions to get a sense of what she's talking about -- lots of disorganized language. But if she comes to us to explain why her younger brother is crying, she'll give us these painfully organized, detailed sentences telling us the specific action sequence as if she is repeating memorized scenes from a script, including all the characters, where they were, and who said what in what order, etc. We have to stop her and ask for a bottom line, just to know if the issue is pressing (he's hurt) and we need to go now, or if it's ok and he's just upset. So it seems like a really mixed level to me based on situation?

yes, I have her in several things that she can use to generalize - she has 3-4 activities for herself each week depending on the week, where she has to work for another adult, and be around other kids of various ages, and with 4 kids total, I've got my schedule carefully handled so that everyone can maintain emotional regulation... including mom!! 🙂

The first was a psychologist - she screwed up the behavior assessment for my son and tried to get us to come for counseling for anxiety without reading all the paperwork she required us to fill out - we canceled our appointments when it became apparent that she wasn't willing to actually do as we asked and assess our son, and asked her to mail a report... 6 months later got the paperwork in the mail with asd diagnosis, lots of recommendations, but no level listed. I refused to go back to her, the whole thing was unprofessional and terribly handled. The second (current) is a psychiatric nurse practitioner. She is looking to treat ocd/anxiety (why we went to her) and wants to do that in order to rule out ADHD, since she said she technically qualifies for an ADHD diagnosis too. But after being in her office literally 15 minutes, I could tell her questions shifted suddenly to start addressing possible ASD. I was shocked at how quickly she picked up on that after numerous other professionals missed it.

Yes, but my son is probably a level 2 also, and the psych report with the diagnosis (and no level listed) was enough (didn't need the full ados eval) for the insurance to cover all the speech, ot, and play therapy I asked for, including a few visits with a pediatric nutritionist. We also got medical assistance off of it... so the only thing I'd need a second opinion for is if this lady won't give me an actual report with diagnosis on it, which is what I'll need for medical assistance. Honestly, I have a lot more reading to do, but a social group might be the only service I look into at this point, we already have a lot of the other stuff covered (interoception, social thinking, academic modifications, sensory stuff) because I saw the deficits and started intervening before the diagnosis.

ok, thanks, so I need to keep focused on the fact that the diagnosis helps ME and it helps my daughter. whether others understand or care to understand is irrelevant. I'm honestly even wondering if I need to share this diagnosis with many people, including grandparents. It'll depend on the situation. I had to laugh, because part of the email was a note that she would need substantial support in the public school setting, and I was like, uh huh, why do you think I'm homeschooling her? She wouldn't last a week in the public school and I knew that from when she was in Kindergarten! Now I just have data to back my opinions up!

Honestly, I have to agree that it is good news. It explains some things and helps me know better how to focus on her weaknesses and how to capitalize on her strengths. It's a bit of a brain game to switch from treatment for my 6 year old son and my 11 year old daughter, who have essentially the same diagnosis/severity level, but present so differently. Can you explain something to me though? The "early symptoms" of autism are SOOOOOO well advertised (toe walking, hand flapping, lack of eye contact, spinning the wheels on cars rather than playing with them, etc.) that I get a lot of confusion from family, and even some medical professionals who think, well gee, if it was missed as a toddler then it's not really autism. I can personally think back and see signs that I missed - the rigidity that prevented us from being able to walk around the block the "wrong way", the need to know the day's schedule every day, the hyperlexia, the terrible time potty training, the sleep issues, the lack of a "cuddly" baby who no one questioned because she just would rather be moving ALL. THE. TIME. BUT - she didn't LOOK autistic as a 2 year old. NOW, autism explains her social deficits, her rocking when upset, flapping when excited, severe sensory issues that had her diagnosed as ADHD at one point, etc. So how do you answer those questions? When it didn't look autistic and probably wouldn't have been diagnosed at age 2 (and at age 6 was diagnosed as ADHD instead) but is being recognized now and people want to point to a "change" or "cause" that would have changed things, when really she just "grew into it", or as she matured, her delays became more apparent from my perspective?

I emailed her back to see if she will give me a report. I didn't honestly expect her to email me results, we have a followup appointment with her in a couple weeks, I expected the info then. She said at the last appointment that she used to diagnosis asd all the time in Texas, but that some insurances where we are now don't like her to diagnose... but I already checked with our insurance and they said they would accept the diagnosis from her.

So the psychiatrist emailed me this morning. She said the Gars-3 results indicated that our daughter (who is 11 years old) "very likely has an autism diagnosis and that her autism is a level 2". And then she recommended that we go to a major children's hospital near us to get a "confirmation" of the diagnosis. We got the same recommendation for our son, too, and never bothered because the insurance accepted the diagnosis as it was and covered the various therapies we asked for. (and realistically, every therapist took our word for the diagnosis and didn't even ask for the psychological report). I guess I'm not clear on what the benefit of having confirmation of the diagnosis is? I'm feeling less shocked by this diagnosis compared to my sons, but still having that (however momentary) feeling of ok now what???

yes I kind of filled it in by translating what they were asking for based on her behaviors... so questions that we could have interpreted more than one way went in the direction of "worse" rather than better. I'd be surprised if in the end the results aren't clear. I'm just thrilled that someone finally brought it up, because we've had a run around of diagnosis (adhd, GAD, OCD...). So I feel pretty good about getting clearer answers anyway. Her asd symptoms have gotten more obvious over the years to the point that it's pretty clear right now how different she is from her peers. So having that diagnosis will be pretty helpful I think.

yes, I think that she got a pretty good picture - and I really liked her... this is the first person who agreed with me about what was going on with the ADHD vs anxiety thing, and asked a lot of the right questions, imo

Thanks - that's exactly why I was wondering.

well true... I just was curious what I could find online about it and each one seems to have its own scoring and nom reference info.

I was more using it for handwriting practice than reading practice... poorly thought through perhaps.