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So, ASD after all


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Not sure what I'm looking for by posting this.  This site and specifically this board is so amazing and helpful to folks, it just makes sense to me to share this here.

 

So my son (DS 9) is on the spectrum after all. We homeschool - we love it - but we started b/c of his experience in pre-school/kinder.  He's had various diagnoses over the years - ADHD (severe), SPD and anxiety.  Oh, and dyslexic. Anyways, we've had real trouble finding good help - therapists or experts. On this board, I read many times that ADHD/SPD might as well be ASD (if that's an oversimplification - sorry!).  I'm pretty sure I rolled my eyes, because CLEARLY NOT - exhibit A: my son.  

 

But over the past several months I've slowly been exposed to people and information from various sources and have found help by reading info for kids/parents of kids with autism. Then recently, we've spent a lot of time with a family with an older son on the spectrum. And finally, I began reading a book on helping autistic kids - Prizant "Uniquely Human" - and the recognition hit me like a ton of bricks. Especially when I read the descriptions of kids and situations and thought back on my son at 2, 3, 4 yo. Reading the book brought back memories. :huh:  So I looked up the DSM-V's criteria.  Can't believe that with all the reading and research I've done I never actually read the D$@* criteria.  It fits.  And explains so much. How can we have been so blind?  I'm obviously not a trained professional, but I firmly believe he's ASD Level 1.  

 

Not sure where this will take us.  He's obviously the same boy he was all along. I am not at all sure how I even feel about it or more importantly what the recognition will do for my son.  Ok, thanks for listening. 

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What you're saying totally makes sense. If you want to get interesting, you can look at this article and see where you place him with the social communication profiles. He's old enough now that he should probably fit somewhere. 

 

Socialthinking - Articles

 

Is there something you want to make happen? Do you want it confirmed before you start saying it or to gain access to services?

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The interesting thing for us was getting his reflexes integrated and having what had previously seemed like ADHD shift to very obvious social thinking and language issues. So when his ability self-advocate or problem solve or communicate breaks down, you see behaviors. He also had issues with group plan (social thinking), etc., that were not leading him to realize his body needed to be in the group.

 

But yeah, we went from a psych saying ADHD-inattentive (laughable if you knew him) to the ped now saying not at all ADHD based on the most recent run of the Quotient (computer tap tap with movement sensors). I'm saying even the diagnosis of ADHD you can question. It's so much more complex. 

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So I checked out your link OhE - and reading the profiles my gut would say the 4. WISC - weak social interactor (or something like that).  3. Emerging social communicator - some of those criteria seem like a better fit (language delay - DS didn't talk much before 4yo and sensory integration issues) - but the overall picture seems 'worse' than DS. 

 

So what do I want to get out of this?   I'm really not sure...a way to understand, strategize, move forward, I guess.  I'd say my top priorities for DS: social interactions, anxiety reduction, emotional regulation.  I think they interrelate. 

 

Funny you mention questioning the ADHD...one of the reasons I kept reading/asking/wondering is the ADHD 'severe' always seemed an obvious but somehow awkward fit -  the hyperactivity the older and more communicative DS has gotten has seemed more out of "stimming", anxiety, SPD than...classic ADHD. 

 

Kbutton - did you find a therapist/expert that helped you come to the conclusion about the "fit" of the ASD label...or did you 'diagnose" it first?  I feel weird declaring this...but experts have seemed off base a lot with my DS...

 

 

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If you go to the Socialthinking - Clinical Training directory link, you can search for someone who does the dynamic social thinking assessment. They can confirm where your dc is and help you formulate a game plan. Also, Social Thinking sells the recommended materials for the stuff you're talking about (social thinking, anxiety, self-regulation). With his age, you'd probably start with SuperFlex. My ds is using it right now.

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The most interesting distinguisher between WISC and ESC, at least to me, is the idea of the "social pass." In other words, when people meet your ds, do they give him a social pass or are they offended by his quirks? For the most part, people who meet my ds, who is solidly ESC (per an eval, I actually drove 3 hours each way for it), give him a social pass. He's quirky, but there's just this something about him that people meet and where his behaviors make you want to think ODD, your gut take on what he can do quickly adjusts it and your sense is you give him a pass. 

 

WISC kids, conversely, don't get a pass. People meet them and they're so high functioning that people just assume the kids are bad. It's why there's so much talk of rejection and depression in the WISC criteria, because it's a pretty high functioning profile where not only are the expectations of others higher but the dc's own ability to notice is higher. 

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Kbutton - did you find a therapist/expert that helped you come to the conclusion about the "fit" of the ASD label...or did you 'diagnose" it first?  I feel weird declaring this...but experts have seemed off base a lot with my DS...

 

It was a process. We got the ADHD news (which is accurate also), but we just felt like more was going on. We were told about a psych that does a good job with 2e kids. She actually suggested the idea from talking to us (before she tested him at all). Basically, the things we brought up pointed that direction. We gave some objections just based on things we thought were true about autism, but she didn't push. We were planning to homeschool that fall, and we attended a homeschool convention where one of the speakers is very well-versed on 2e kids (gifted plus some kind of disability). Her profile of 2e autism rang all kinds of bells for DH and I. The session was so crowded we couldn't sit together, but when we left the room, we each asked the other if we were thinking that autism was on the table, lol! (And thought of a couple of other kids we know too!!!). We told the psych that we would like that diagnosis to be explored, and that was it. 

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Either way, WISC or ESC, you've got some significant social thinking deficits you could be working on. ESC just means it takes a lot more to get to progress. Like with my ds, we've been working on Zones of Regulation (good stuff, look it up!) for, um, well a long time now. Over a year, maybe 2, I forget. So slow, so hard to get a click, so little probability that he can actually do it for himself. He will, once in a while say something that shows he gets it (with his gifted IQ, mind you), and he might acknowledge it if YOU say the Zone for him.

 

Contrast that with straight ADHD, where you can do Zones on those kids, put them on meds, and sometimes it's like wow it comes together and things click and shazam progress! And here we've had multiple multiple professionals working on it for a solid year now, a solid year, and we've got inchworm, teeny tiny progress.

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WISC kids, conversely, don't get a pass. People meet them and they're so high functioning that people just assume the kids are bad. It's why there's so much talk of rejection and depression in the WISC criteria, because it's a pretty high functioning profile where not only are the expectations of others higher but the dc's own ability to notice is higher. 

 

I would agree with this, though it can also be "just assume the kids don't need help" or other variations of this. 

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Thank you for sharing. I didn't even know the keyword "DSM-V" to search that stuff til now (google changed it to DSM-5, whatever that means). And I didn't even know about levels and how they were described.

 

I hope this is a positive thing, that you think of it as some type of closure to the nagging questions (unless you need a second opinion or something is amiss).

 

I started reading about the levels when you posted this thread. I can see how level 1 at least somewhat applies to my child and it made me go, "hmm."

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Well this was specifically the Social Thinking workshop people explaining how to use the social communication profiles in dynamic evaluations, and in that specific context (how to use their tools), where they were giving myriad examples of how you would distinguish profiles (trying to build mental pictures for us), they gave the idea of the social pass.

 

They literally mean you meet the person, you walk up to them, and your subconscious puts together things faster than you can even process it. Like you have your whole conscious level, and then there's your subconscious level. And this was talking to a room full of people and saying your gut had an assessment, your gut gave you info, what was your gut level reaction to the person. 

 

Remember, therapists, OTs, psychs, these are people making demands on the dc, so they are assessing how likely they are to get compliance, whether it's ok, how flexible they should be, all kinds of things. And in that context, where people see lots of kids, does their gut give the particular kid a pass or is your gut like no this should have been working better?

 

And for me, it was really striking, because in general people give my kid a social pass. They really do, in a way that is just hard to put your finger on. Even my 70+ something FIL gave my ds a social pass. He didn't have objective evidence or know diddley about autism, lol. He just knew something was really, really different and that he needed to give ds a pass and back off and be patient. If the person DOESN'T instinctively give them a pass, then their gut reaction is telling them the person COULD have met the expectations and that they're BAD. 

 

I had a person treat my ds like he was bad, and I FIRED them. It's not consistent with the way ANY of my other workers or professionals treat him, and it was harsh and discordant. I even wondered like ok, am I just a pushover, do I just not get it? To me the social pass concept is important, because it reminds me that, while I have to hold to as high expectations as we can get to, reality is he has a disability and that people GET that he has a disability and that it's OK to roll with that and not pretend it's not there.

 

Whatever, total rabbit trail. Anyways, it's gut sense, in that moment. It's not really a statement of how many other things are or are not going on. They literally mean for a professional to use it as they gather data. The data collection starts in the lobby as they talk, as the dc doesn't respond, etc.

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Glad my post was a bit helpful to you heartlikealion.  I usually feel that I get more than I give on online boards, so I'm glad you chimed in. 

 

The pass...it is an interesting idea and I can see why as a general rule of thumb it could be a good way to think about functioning - by others' reactions. the question.  Often DS doesn't get the pass - and I've been talking about it for years (in a different way) as a problem - that people don't recognize how 'special' he is until it's too late. The past six months we've seen extreme meltdowns subside - a med has made a huge difference there. But still, major, obvious distress.  And even then some folks don't get it - that they actually went a long way to provoking the melt. 

 

But, on the other hand, lots of people recognize they're not dealing with normal. When DS is being cute, or amusing, or just touchingly honest and enthusiastic, people can respond really positively to him.  But sometimes they respond in a way that I can tell they know it's not really "normal."  So, no, he doesn't always get the pass (funny to call that a bad thing).

 

And if DS is having the bad kind of red letter day or moment, he has not gotten the pass - b/c it was obvious. Waiting in line to check in to a hotel late one night (not the o-riginal plan). An elderly couple, probably grandparents, saw DS yawn and said something sympathetic about him being sleepy or tired. Instant melt. Retrieved DS from the other side of the lobby, took back the lounge chair pillow thing he was banging on the walls and trash can, made him stand at a specific spot and put his hands on our suitcase. Held him there  by the shoulders and breathed with him.  Ok, "crisis" averted fairly quickly. Grandfather said very quietly, "I'm so sorry." Grandma looked confused. I couldn't deal with them, but wanted to make him feel better.  "It's okay, not your fault." I said and he nodded, looking pitying.  

 

I guess my working hypothesis would say one of those two categories is accurate and go from there on working on social interaction and communication. 

 

I like the social thinking website you linked.  I've been looking at materials on there for a while now and just not dived in.  I just ordered a "What to do when" book and a "Social skills picture book" and we'll start with those while I work on a more long-term game plan.  Step one: get a game plan.  :ohmy:  

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With that level of behavior at age 9, you need to focus first on self-regulation, ie. understanding how he's feeling and taking responsibility for it. For us it has worked out well to have someone coming in once a week (a behaviorist) and to have me do the follow-up, the daily review and carry-over practice. 

 

Socialthinking - Search Results  These materials using the 5 Point Scale are all appropriate for him, and you could begin immediately. It's a simple concept, something they'll literally cover in one day/session, but you're going to spend MONTHS applying it and extending it to all of life, over and over.  It's nice to have the book, but you don't *have* to. It's just a concept and discussing it and applying it. You could find pics and things on pinterest and get started immediately. A 5 is something even adults need to ask other adults for help for. It's CALL THE POLICE, call the FBI. And I'll literally say to my ds "Do we need to call the police? Cuz hey, if we need to call the police about this, I want to make sure we do!" And he'll laugh and calm down. 

 

That leads to a safety point, btw, that adults don't ask kids for help. If adults are asking your kid for help, they're creepy and not safe. We had a run-in with a creepy person at the pool yesterday, so that's on my mind. It's just nice that our instruction and terminology and concepts all fit together. 

 

Socialthinking - Search Results Then begin Zones of Regulation. Again, honestly, this is stuff where it's great to have a team approach so that it's not just you. That way you know it gets done, but it's also a fresh voice showing him more people think this way, that it's not just a Mom thing.

 

Socialthinking - Search Results  Then, as you get those tools in place, they can begin working through SuperFlex with him, helping him realize that people have feelings about his behaviors.

 

Bringing in a behaviorist was a big mental shift for me. Not only was it outsourcing (woo, ooo, scary), but this lady walked in the door, looked at ds' behaviors, and says to him "Are you making a good choice?" And I'm standing there thinking why are you saying that to my blessed little one with autism, he can't make a choice! And then, in that moment, I realized how off I was. Our kids HAVE A CHOICE. When we teach them what is going on in their bodies, how the world works, etc., we empower them to make CHOICES rather than leaving them as victims of their neurology. We empower them to choose strategies and use the strategies for themselves, rather than being dependent on Mom driving it to help them cool down. I can now say to my ds "You need to go chill. You need to make a CHOICE to help you cool down. Make a good choice and go cool down." and he can go make a safe choice. He understand the rules of what he's allowed to do when he cools down (not breaking things, not destroying things). This is probably THE most important life-long skill we can teach our kids, how to self-regulate, how to make a choice to cool down.

 

It's super hard, I get it. I can't read my ds' non-verbals worth anything. He was totally ragging on me a couple nights ago, using his Superflex knowledge, haha, saying "Mom, you're not reading my non-verbals, I turned away and don't want to hear it!"  :lol:  But that doesn't mean we stop trying. We ALL keep learning and growing, relative to ourselves. 

 

Ok, I just figured out, you were trying to make the grannie feel better? Ahh. It helps to have a generic statement like you know he has a disability and are working on it. It's one reason I was glad to get the diagnosis, because ds' meltdowns are on the level of police stopping. I've been scared what people would say, so to be able to say (and have the paperwork to back up) he has autism, we're following the behavior plan, etc., really helps. 

 

It's really important to work on self-regulation. I've seen too many stories in the news about kids with autism getting tasered (or worse) by police. If you know police are coming, you can ask them to bring someone in who is trained, because there is actual training for it. They have the training in our area for some of the police, and it's something you can ask for if you think your ds is not going to respond well to police. My ds is extremely scary in a meltdown, so it's something I'm very aware of.

 

You can use a team approach on self-regulation. Like you can get a behaviorist to do Zones AND get an OT. He sounds like he has some sensory and interoception issues. So the OT can work on it to, helping him realize how he feels. I got the Interoception book Jen mentioned recently and am getting ready to start it. It's in my pile, sigh. Actually, I think I'm going to have one of my ABA workers do it with him, because he has the right personality for it to be really good at it. I'm super psyched about that. 

 

With my ds, I really have to limit to 3/4 days. Like if I think oh it's going great, and I push to a WHOLE day (of whatever), hang it up, toast, we're going to have problems. I have alarms on our devices for things like when to get in PJs. Say we're out and the alarm goes off. That's my big clue phone that it's time to wind down, leave anyway. It's just our reality. And if we want to be out late, then we need to start the excitement of the day late. So like at Disney, we could do 1pm to fireworks OR morning to dinner. But do the whole day, and well it ain't pretty.

 

So self-regulation would be the starting point. Then social thinking (realizing how people feel). And interoception, which is realizing how you feel. And yes putting words to all that and being able to self-advocate and make choices. You're going to be putting words to everything the whole way. You'll get printable charts in Zones so you can do check-ins and put words to things. You can expand his learning by doing Zones check-ins multiple times a day for him and yourself! That way he gets more practice. You can carry the Zones thought process over to your lit, your tv viewing, etc. 

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My DD is kind of on the border between ESC and WISC. She definitely gets more of a "pass" now that she's got the very visible evidence of the physical disability because when she struggles, the assumption is made that she had trouble hearing the other person. It makes me angry that one type of disability garners sympathy while the other type of disability doesn't, but that has been our experience.

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