When do you share an ASD diagnosis, if they can usually pass for NT?

[4KookieKids]

We ran into an issue this week in swim lessons, where the teacher wanted my 7 yo to keep his head above water while she works with other kids, just as standard safety protocol. Apparently she made several comments to the effect of "not playing around" and "quitting the underwater game", which my ASD2 son did not catch *at all* before she finally gave him his "last chance" of "Keep your head above the water while I'm working with the other kids, or you will sit out on the side of the pool." It was perfect and clear and exactly the instruction he needed to hear, except that the poor kid had no idea why he was getting a last chance when he didn't feel he'd gotten a first chance. It was obvious to me from watching what she had meant earlier (but they don't want parents interfering in the classes, so I couldn't do anything about it at the time), but he just didn't understand what she was trying to say. We're working with him on asking for clarifications in those situations, but the issue now is that sometimes he *thinks* he understands what someone is saying (sorta), so he doesn't ask still and ends up misunderstanding completely.

 

I'm not sure when it's good to just ignore it and move on and hope it's not an issue and when it's good to share a diagnosis and just say that he benefits from very explicit instruction because a lot of stuff just goes right over his head otherwise. I don't want it to seem like I'm complaining that they're doing something wrong (most kids really would've understand the instruction) or that I'm making excuses for my kids' non-compliance, but he really would benefit from having things said more clearly. For the most part, he passes for NT or just weird, but he's not "obviously" autistic to a casual observer.

 

This has come up in a few areas where a person in authority has just lost patience with what appears like disobedience, but really is just not understanding (I confess that I'm just as guilty of doing this and getting frustrated with him for not doing what I wanted him to do, even though I technically didn't tell him what that was - there are some things I am just realizing I tend to assume others will understand. and he doesn't), so I'm wondering how you guys decide to share this sort of information.

[Ottakee]

I would use a need to know basis as a guideline.

 

In this case the swim instructor should be told the basics privately, esp that day needs very clear instructions and that he doesn't get figures of speech, etc.

 

This will make life much easier on swim instructor and your child.

[OneStepAtATime]

I would recommend in situations like what you describe that you discuss it with the instructor. This is a swim instructor. There are safety concerns involved as well as other issues.

 

Other than that I would share when someone in authority may cause your child emotional harm from lack of understanding or create a safety issue from lack of understanding.

[4KookieKids]

I would recommend in situations like what you describe that you discuss it with the instructor. This is a swim instructor. There are safety concerns involved as well as other issues.

 

Other than that I would share when someone in authority may cause your child emotional harm from lack of understanding or create a safety issue from lack of understanding.

 

 

In this case the swim instructor should be told the basics privately, esp that day needs very clear instructions and that he doesn't get figures of speech, etc.

 

This will make life much easier on swim instructor and your child.

 

Ok, so you don't think letting them know that he's autistic and really needs very direct and explicit instruction would be offensive? The last thing I really want to do is offend one of his teachers by somehow suggesting that their communication skills are somehow lacking, you know? I don't want to imply that they don't speak clearly enough - just that he needs *more* clear instruction than the average joe.

[OneStepAtATime]

Be pleasant and understanding of their situation but they need to know. You aren't being rude, you are addressing a safety concern that could arise because your son processes verbal input differently. They need to know.

[Lecka]

No, it's not offensive. It is normal stuff parents do, you can just say it in a nice way.

 

Once you get in the habit of it it quits being a big deal.

 

I think this age is one where expectations go up so it may start to come up more often. What is expected for the under 6s and the 8 and ups is a different level of behavior.

 

He comes across like he is ignoring the teacher on purpose and that is not fair to the teacher to think he/she is being ignored, or your son to be treated like a kid who often ignores the teacher.

[Lecka]

He also may come across quirkier than you realize but people don't magically know the best way to talk to him. Since you know the best way it is good to share it.

 

Maybe once in a while you will get a comment about "are you doing a special diet for him" but it is just making conversation, for a lot of people that could be all they know or they may have a friend who had a good experience with a special diet.

[4KookieKids]

I think this age is one where expectations go up so it may start to come up more often. What is expected for the under 6s and the 8 and ups is a different level of behavior.

 

 

That's good to know. It's also probably why he wasn't diagnosed until just last year. He could pass better as a younger kid (with adults, at least).

 

 

He comes across like he is ignoring the teacher on purpose and that is not fair to the teacher to think he/she is being ignored, or your son to be treated like a kid who often ignores the teacher.

 

This is one of my fears, in particular. He's very sensitive to people's emotions - he just doesn't usually understand what needs to be done to fix a situation when someone else is getting upset or frustrated with him.

 

Thanks.

 

[Terabith]

I would use the example you just gave.  It perfectly expresses both the problem (he didn't understand that "quit fooling around" meant "keep your head above water") and shows the obvious solution.  I don't know if I would use the term autism or not, just because of the baggage that people bring to it, but "He has difficulty understanding certain kinds of language," followed by this example would be helpful.

[freesia]

As someone who had taught many ASD kids in different environments, it is always better to know. Whenever I haven't been told up front it has caused more stress for all involved than if I'm told upfront. As you say, ASD kids need different techniques to be successful and the more frustrated the teacher/ leader gets, the worse the situation spirals. The info you gained in getting the diagnosis was helpful for you. It is the same for anyone who wants your DS to succeed.

[Plink]

Mine is older, so she does all the advocating for herself now, but she always makes sure leaders and instructors of any kind know of her limitations before the first class/lesson/activity.  It makes life easier for her in the long run.  DD knows that she can appear disruptive or disrespectful.  People are generally great about providing accommodations or extending grace, but without prior knowledge, they are placed in a position of having to guess her intent.  She would prefer to avoid misunderstandings in the first place.

[4KookieKids]

Thanks, all! I benefit so much from all of your wisdom and experience!

 

I went ahead and wrote the teacher an email (probably longer than it needed to be, but oh well) just apologizing for his behavior, explaining that he didn't understand her instructions at first and that he has autism and needs very direct and explicit instructions, reassuring her that I'll also work with him at home and before swim lessons to remind him to keep his head out of the water so that he can hear her instructions better and be safer while she's halfway across the pool, and thanking her. She wrote back already and thanked me for the information and said she'll try to be more clear in the future.

 

I started to try to read between the lines (is she offended? does she think I'm making excuses? etc.) and dh just closed the email and told me it sounded like a very nice response and to not overthink it. lol. :)

 

 

 The info you gained in getting the diagnosis was helpful for you. It is the same for anyone who wants your DS to succeed.

 

This is something I'd not yet thought about and I think something I need to reflect on more. I think I never really thought about how knowing might help some people who genuinely want him to succeed in life.
 

[Jennifer-72]

Mine is older, so she does all the advocating for herself now, but she always makes sure leaders and instructors of any kind know of her limitations before the first class/lesson/activity. It makes life easier for her in the long run. DD knows that she can appear disruptive or disrespectful. People are generally great about providing accommodations or extending grace, but without prior knowledge, they are placed in a position of having to guess her intent. She would prefer to avoid misunderstandings in the first place.

How awesome that she is so proactive and able to advocate for herself!

[PeterPan]

I'm cantankerous, but I would take him out of the class. Around here EVERYONE sits on the side of the pool if they're not directly supervised by a teacher in a learn to swim class. And even with a 4:1 ratio and the kids on the side of the pool they STILL have a lifeguard right there beside them. I've been there when guards took the drink (went in for one who went under), and it's no laughing matter.

 

So that's the first gig, to see if this is the safest set-up you can find. It doesn't sound like they're following best practices, at least not compared to our *exceptionally safety conscious* Y.

 

Next, yes, that's unworkable not to tell the instructor. If he has ASD2 and actually has ASD2, then it's obvious to a non-expert after just a short time with him. In other words, he needs significant support (by definition of ASD2) and it IS noticeable and IS impacting how they work with him. My ds is high end of ASD1, like high enough that we go back and forth and have thought about bumping him or retesting to see. I can GUARANTEE you instructors notice. I have my ds in lots and lots of classes, and I ALWAYS always always always tell them. 

 

Anybody who works with kids a lot can see spectrum, even ASD1, way before the general public. They recognize it because they know in their precise field (in this case swimming, whatever), assuming they have enough experience, how kids typically respond in that scenario and how the dc in question responds. So if they're very observant, they'll catch it. A swim instructor caught it on ds back when we were in our no it's not, the SLP says it's not, we assume it's not, etc. stage. She didn't have fancy terms. She just knew he was responding the way other kids who got diagnosed with autism responded. Lack of joint attention was actually the most obvious thing. He just looked different in the pool, even when he was doing the same things.

 

So one, make sure he's safe. This instructor may not be creating enough structure for him to be safe. I'm ALL FOR swim lessons! My ds has had lessons year round 2-4 days a week, for three years now. I make sure every instructor knows, because he might not respond to their instructions. If the pool is loud, has exhaust fans going, and he gets in his own world, he really might not hear/notice them. He might not have typical lane etiquette. He might touch or otherwise annoy children or become loud or rowdy if overstimulated. He might have very UNPREDICTABLE responses to unexpected situations. He might not be able to problem solve a really simple situation, which could lead to a really DANGEROUS situation. So I TELL them because I want to make sure they're keeping him SAFE and offering him the extra SUPPORT that he requires to be in their classes safely!

 

And I've literally had those situations. One time his goggles popped up while he was diving into the pool. He had been swimming, um, 2 years at that point? I don't remember exactly what happened, but it became very obvious that he couldn't problem solve and figure out what to do. The instructor had to help him, and fortunately he was in a lane close to her where she could. But to stop, tread water, get to the side, he literally couldn't problem solve. Instead he had an anxious stress reaction and was in danger. All his strokes, awesome swimmer, but couldn't sove a problem. They have testing for this (TOPS) and it's a serious issue. He's had other things happen like where he jumped in as a novice, took on water, and became extremely anxious. Took us a LONG time to calm that down! I had an instructor who blew off my comments about autism and then would get all pissy and upset about behaviors, wanting to lecture him and the class about being bad. She was a grouch! So for that class, I'd literally have to watch the entire time and I'd walk over myself if his behaviors were not totally appropriate. She couldn't handle the behaviors or confront them appropriately, so I had to.

 

Any time our kids are doing stuff that is new or stressful or challenging, they risk going into yellow zone or even red zone in public. Yellow Zone (if you read Zones of Reg) can be very happy, giddy. It can just be overmuch, where they begin to lose control. This has happened with my ds. 

 

To me, your instructor doesn't sound like she has good instructional control, and she doesn't seem to have the experience or intuition on how to confront problems and how to instruct in expected behavior. Maybe I'm way reading into it, fine. I'm just saying it's *a* take on what you wrote, something to make sure isn't happening. Personally, I'd strongly consider moving on. I've found with my ds the instructor is pivotal. I select classes with good instructors who can work with him and I move on if they can't. The instructor really matters.

 

Oh, and I wouldn't have the talk by email. You already did, too late. I'm just saying that's not maybe going to go well. It doesn't give them the chance to dialogue and talk about their experiences and their assumptions about autism. I gauge how careful *I* need to be (like do I stay the entire time and observe the class, are they ok without me, etc.) by what that person says. It's really a continuing dialogue you want to have.

Edited June 2, 2017 by OhElizabeth

[PeterPan]

This is something I'd not yet thought about and I think something I need to reflect on more. I think I never really thought about how knowing might help some people who genuinely want him to succeed in life.

 

 

It really depends on whether they know what to *do* with the information. You'll get some people who blow you off (he seems fine to me, all kids do that), some who ask you what the behavior plan is and what they should do to make things go better (ideal response), and some people who are just idiots.

 

Yeah, life or death, anything I want to go well, anything involving something where it could have a long-term effect or an anxious response if not handled well, anything he might not be completely ready to do without support, yeah I'm gonna be telling. If he needs support to do that activity in that setting, I'm telling in order to make sure he gets the support.

 

Now I *didn't* bother to tell for a one hour a day, one week basketball camp. I was able to stand on the sides and watch and debrief him on expected behaviors, and it was highly structured. So I was there for support and the structure was high enough that he could succeed. Soccer camp was longer and involved issues of self-advocating (tired, thirsty, etc.), which means life or death. For that I tell. Water is life or death. Anything where behaviors are likely to occur or he will need support (chess club, possibility of losing and provoking behaviors), I'm going to tell.

 

I try to make sure I tell the person most able to do something with information, like the top teacher, not the underling assistant. 

 

Yes, I've gotten the blow-off. Then I know I have to be cautious. He's still going to have behaviors, but it means I now know that instructor is too stuck in their craw to be helpful about it, making MY job harder. 

 

Three years in and I STILL tell, even for swim. Three years in, it's still noticeable. The precise behaviors change, but the need for support is still there. Like now, my ds just changed from a class that was busy (15 kids, 5 kids per lane) to a class with only two other boys. It's lower level, but he's SO much happier with the less difficult social situation. When you say the A word, people give you what you need. I use it to get help for him like that. Otherwise, he just looks like a really obnoxious boy fussing about going. He couldn't put it into words, but it was a level 5 (call the police!) level problem in his world. We changed, and now he's happy as a lark again, so happy. So before I was worried about him drowning, and now it's can he handle the social dynamics of swimming in lanes. It never ends, just changes. So I'm always there, advocating, using that diagnosis to get him what he needs. 

 

And yes, people do want to help. Most people are pretty awesome about it.

[4KookieKids]

Next, yes, that's unworkable not to tell the instructor. If he has ASD2 and actually has ASD2, then it's obvious to a non-expert after just a short time with him. In other words, he needs significant support (by definition of ASD2) and it IS noticeable and IS impacting how they work with him. My ds is high end of ASD1, like high enough that we go back and forth and have thought about bumping him or retesting to see. I can GUARANTEE you instructors notice. I have my ds in lots and lots of classes, and I ALWAYS always always always tell them. 

 

Anybody who works with kids a lot can see spectrum, even ASD1, way before the general public. They recognize it because they know in their precise field (in this case swimming, whatever), assuming they have enough experience, how kids typically respond in that scenario and how the dc in question responds. So if they're very observant, they'll catch it. A swim instructor caught it on ds back when we were in our no it's not, the SLP says it's not, we assume it's not, etc. stage. She didn't have fancy terms. She just knew he was responding the way other kids who got diagnosed with autism responded. Lack of joint attention was actually the most obvious thing. He just looked different in the pool, even when he was doing the same things.

.

  

He also may come across quirkier than you realize but people don't magically know the best way to talk to him. Since you know the best way it is good to share it.

Maybe once in a while you will get a comment about "are you doing a special diet for him" but it is just making conversation, for a lot of people that could be all they know or they may have a friend who had a good experience with a special diet.

This is something I forget often. He's my oldest and my only boy, and I'm so used to him that I often forget Howe different he is from other kids actually. I remember my anxiety over having him evaluated, and rereading our submitted tests after the fact and being sure they were going to tell me he was normal and I was just blowing things out of proportion. Lol. So much of it just seems normal to me and it's hard to remember that it's really not for most kids his age.

[MerryAtHope]

I started to try to read between the lines (is she offended? does she think I'm making excuses? etc.) and dh just closed the email and told me it sounded like a very nice response and to not overthink it. lol. :)

 

I agree with your husband :-). 

[Lecka]

I agree with your husband too.

 

Snide difficult people exist in the world but probably don't teach kids to swim as their job!

 

My husband has a difficult time monitoring his language to speak more clearly.

 

Just last night our son was pushing a couch cushion up with his feet, and my husband was saying "treat the couch nicely" and starting to get agitated. Then I said "put your feet down" and he put his feet down. So it can be hard even for people who have good intentions sometimes.

 

There are a lot of cultural expectations about boys getting along on their own and being smothered by their moms if their moms step in too much.

 

But if you have a child who has greater needs then I really think it is better to do what is best for your child and not worry about being too smothering or being a helicopter parent or whatever.

 

When you set him up for success that is the best thing for him, it is not going to hurt him. And he is still little, too. He will mature with age, too, but right now it sounds like it would really benefit him for others to have more information.

 

As far as autism baggage -- really what I hear are comments about diet and asking if he can be touched. My son can be so I will say something like "that is true for many kids but my son doesn't mind." I have only heard "are you sure he has autism" one time from a social encounter and as I talked to this person more she was more curious than meaning something rude by it. My ILs are the only ones I have had make a serious pushback like that. I do hear of people having that said to them, though, but I think it is not so much from things like a swim class.

[Lecka]

Also this kind of conversation/email does get easier! The first couple of times I did something like this I was extremely uncomfortable. Now it is something I am comfortable with.

 

I also feel like there are more people cheering when he does something that would be unremarkable for a lot of kids but is quite the accomplishment.

 

Not that it always goes like that, but nothing ventured nothing gained, that is me being positive ;)

[Lecka]

I am just going to add -- there is an age right around here where the ratios go up (like how many kids per class or per teacher) because the age-appropriate expectations have gone up, and that is now those ratios come about.

 

Now maybe your son is really ready for that higher ratio two years (just as a number) later than other kids his age. If you have that kind of situation.

 

It is something I think is hard when your child is in the youngest age range of the new ratio.

 

You might look at seeing if you can move him down a class or look for semi-private lessons (like a group of 4 or something) for that youngest year. Depending. It is something people do.

 

Also you might find your son does better in a higher-structure activity with less waiting. That is something people see.

 

It sounds like your son is really doing well in this class, though, so this really may not be an issue at all.

[4KookieKids]

It sounds like your son is really doing well in this class, though, so this really may not be an issue at all.

 

I appreciate all these things to think about! I don't know so much and am fairly new to the game, so I am thankful for the reassurance that it really does get easier as you go along (some parts of it, at least! lol). The teacher was nice enough yesterday, and he only has 4 other kids in his class I think, and she's the director of the entire aquatics program. He loves to swim and has held his own until now, but I do think he's always come across as that kid who doesn't listen.

 

[PeterPan]

I don't expect my Y instructors to provide ABA. I put him in classes, see deficits, and then I go ok, time to bring in some therapies or instruction or supports so he can get the skill I'm seeing is missing. It's not their problem to deal with. It's my gig to make sure I'm giving him enough instruction behind the scenes that the next time he's a little closer to where he needs to be. So if he's not yet getting any interventions, maybe this is a sign that expanding your team could be a good thing.

 

My ds was 7, same age as yours, when we brought in a behaviorist and began ABA. Now our behaviorist is *not* pure ABA and many do blend. You'd want to find one who satisfied you. But I know I was really, really apprehensive, having read things online and being told things by people about how ABA was abusive, ruins gifted kids, blah blah. Whatever, not the experience we're having. He has made TREMENDOUS leaps this year in self-regulation, in self-advocacy, in self-confidence, in understanding the world, in trying to understand what his behavior should be in the world and be more appropriate. That's stressful and hard, so in some ways it actually seems worse! But it's harder because he's actually NOTICING the social dynamics rather than being oblivious to them.

 

For us, the Y was a really good step! We LOVE the Y and spend a lot of time there. Yes, what Lecka is saying about flexing levels is what the Y did for us. 

Edited June 2, 2017 by OhElizabeth

[Guest]

You're doing just fine. I agree with your husband. Try not to over think things. Sometimes, in the real world, people can be more understanding if we give them the chance, but you have to give them the chance to find out. Without that knowledge it becomes a difficult situation for both the instructor and your child. You handled it well :) Searching for hidden meanings in her words will not help anyone. You have done nothing wrong other than to give her the opportunity to understand your child better so she can be more effective and so that your child does not appear like the bad kid that refuses to conform.

Post edited for privacy.

Time will tell, and if things are not working out, you can then find another solution :)

Edited August 13, 2017 by Guest

[Crimson Wife]

Before my DD started wearing visible hearing technology, I used to have the ASD talk with instructors/coaches/etc. Now I have a similar talk but it's mostly hearing loss related. It's sad but people tend to be way more sympathetic when it's a physical disability rather than a LD. I don't generally mention the autism unless it's someone used to working with deaf-but-NT kids.

[winterbaby]

I disagree that people who work with kids can always tell. One of the reasons we're pulling mine out of school is teachers who chronically fail to comprehend that she isn't trying to be "disrespectful" even after they've been privy to loads and loads of detailed information about what's going on with her.

[PeterPan]

I disagree that people who work with kids can always tell. One of the reasons we're pulling mine out of school is teachers who chronically fail to comprehend that she isn't trying to be "disrespectful" even after they've been privy to loads and loads of detailed information about what's going on with her.

 

I've had some pretty oblivious coaches and teachers with my ds, too, yes. As a general thing, yes people who work with a lot of kids can tell something is going on. When we took my ds to Disney, the make-up worker doing his pirate makeover could tell very quickly. She was trying to do jokes with him and he wasn't getting them. She knew he wasn't responding, in that limited situation, the way other kids would respond. I offered an explanation, and she's like oh yeah I know we see lots of kids. :D

 

I think teachers and coaches are at the disadvantage that they're being called on to make moral implications about behavior. That disrespectful gig is where we're at right now. Ds has started calling adults idiots, which of course REALLY rubs them the wrong way, oy! But the behaviorist is pointing out that it's a de-escalation for him, that idiots is a step down from being aggressive and hitting them, and that he's trying to assert himself other ways since he now realizes physically is not allowed. So our approach is to flip it and say tell us your emotion, "I'm in Red Zone, I feel ANGRY" blah blah. And professionals (speech therapist, behaviorist, etc.) can do that. Lesser trained people like a sports coach? They're just totally rubbed the wrong way, even when you say it's an expressive-receptive language delay, etc.

 

That's why I go back to my point that we can't expect them to do ABA and behavioral work. They can provide typical level support in a typical setting, but if our kids need more than that then we may have to bring in an aide or change settings or be doing work on the side. Those coaches are not going to be doing the work of ABA for us. That's why people doing ABA get paid $$$. Even my underlings get $20 an hour, which is 3X what a Y swim instructor makes around here. 

Edited June 2, 2017 by OhElizabeth

[Lecka]

My son is more obvious. It is a big thing in Social Thinking materials that kids who are more obvious get treated with more understanding. Maybe that is what I am seeing. But my son does get treated well and with understanding probably 99% of the time, and I think there is also conscious effort to model how other children should treat him/interact with him.

 

I have more problems (not problems but it can hurt my feelings) with other children staring if they haven't been around a child who has some visible difference like this before. But kids catch on quick with adult modeling, and it is not something adults like to see so they tend to act.

 

And I will act too if it is something where an introduction and saying a few little things will help, which I think it usually does.

Edited June 2, 2017 by Lecka

[Guest]

The op's child is not being aggressive, not name calling, or anything like that. He just needs explicit instructions. That is what I'm reading!

 

Here's a quote from Temple Grandin:

 

"Using Teachable Moments to Learn

Manners, Social Skills, and Language

 

I was brought up in the 1950’s and my mother and all the other mothers in the neighborhood used “teachable moments†to teach children correct behavior. When a social or manners mistake was made, Mother NEVER screamed “No†or “Stop it.†Instead, she calmly gave me the instruction of what I should do. Below are some examples.

 

If I twirled my fork around above my head, she said, “Put it on your plate.â€

If I ate mashed potatoes with my fingers, she said, “Use the fork.â€

If I touched merchandise in a store, she said, “Only touch the things you are going to buy.â€

If I forgot to say “thank you†she would give me a cue and say, “You forgot to say pause.â€

 

In a day there are many “teachable moments.†At a hotel, I observed an excellent example of this. A little boy started to get on the elevator before the people in the elevator got off. His mom said, “You must wait for the other people to get out of the elevator before you get on.†She did not scream “No†when the child stepped forward towards the open elevator door. Instead, she calmly gave the instruction."

 

Here's the link with more:

http://www.templegrandin.com/temple_articles/teachable_moments.html

[AimeeM]

Perhaps some consider it overzealous on my part, but I always share the diagnosis with all adults who will be in a position of authority over my child. Always. The boys' dance teacher, any babysitters, Marco's piano teacher -- all of them. Immediately and before they start doing anything with my children. 

 

And I do it for exactly this reason. Given, it's fairly obvious that something is "different" with my two, but not during the initial 15 minutes or so, typically, and I want all of them to start out on the right foot with my boys... because if my boys feel slighted and judged or that they were treated unfairly, they are not the forgiving type with outsiders. (Well, one of my boys isn't the forgiving type with outsiders; the other is to the extent that others walk all over him.)

[MerryAtHope]

There are a lot of cultural expectations about boys getting along on their own and being smothered by their moms if their moms step in too much.

 

But if you have a child who has greater needs then I really think it is better to do what is best for your child and not worry about being too smothering or being a helicopter parent or whatever.

 

Yes and yes! 

[Lecka]

I am close to Aimee M. I am not 100% but close.

 

I feel like -- on one hand, I risk looking overprotective or like I am a difficult person looking for attention. On the other hand my child has a hard time unnecessarily.

 

I am ready to take that hit if it happens vs let my child be the one to take the hit.

 

I don't do it for things that are very informal, I am nearby, and he is with his siblings -- and I am confident he will be totally fine. So like -- if I picked up my daughter from somewhere and kids were playing informally, at this point I would chat with parents instead of sticking with the kids to keep on top of things.

[Guest]

Perhaps some consider it overzealous on my part, but I always share the diagnosis with all adults who will be in a position of authority over my child. Always. The boys' dance teacher, any babysitters, Marco's piano teacher -- all of them. Immediately and before they start doing anything with my children.

Same here and we started right after the diagnoses. My husband had no reservations on that either.

 

I have never used the diagnosis as an excuse for bad behavior. That I deal with in the moment, just like Temple Grandin describes. I teach my two that just because they are autistic it is not an excuse for being rude or for bad behavior. It's why I quote Temple Grandin so much. Her mentality agrees with mine. When they need explicit instruction on something, that is what they get and I make sure the adults around them know they are on the spectrum so that they understand that there is a specific way that they need to approach them. Each one has different needs. But the rules of bad behavior have been made very clear and reinforced from a very young age and are reinforced when needed. For the 8 yr old we have specific wording for the rules and it stays the same.

 

Again though, this is a different case. This is a case of a boy that needs to know clearly what he needs to do and I have found with my 8 yr old, when we follow this approach, it works very well for him. He is clear on what he needs to do.

Edited June 2, 2017 by Guest

[Guest]

nm

 

Edited August 13, 2017 by Guest

[AimeeM]

Same here and we started right after the diagnoses. My husband had no reservations on that either.

 

I have never used the diagnosis as an excuse for bad behavior. That I deal with in the moment, just like Temple Grandin describes. I teach my two that just because they are autistic it is not an excuse for being rude or for bad behavior. It's why I quote Temple Grandin so much. Her mentality agrees with mine. When they need explicit instruction on something, that is what they get and I make sure the adults around them know they are on the spectrum so that they understand that there is a specific way that they need to approach them. Each one has different needs. But the rules of bad behavior have been made very clear and reinforced from a very young age and are reinforced when needed. For the 8 yr old we have specific wording for the rules and it stays the same.

 

Again though, this is a different case. This is a case of a boy that needs to know clearly what he needs to do and I have found with my 8 yr old, when we follow this approach, it works very well for him. He is clear on what he needs to do.

Agreed. Marco needs absolutely explicit directions, given with as few words as possible. Right now, for his piano lessons, that means I sit right next to him and his piano teacher for the entirety of the lessons -- so that I can help coach his teacher. If she says, "Use fingers 2 and 3 to hit these two black keys," it's nice and explicit, but too many words for Marco to intake, so I rephrase it and show her how to place Marco's hands where she wants them and just say, "Touch these keys with 2 and 3."

 

After the disaster with his last OT, I take nothing at face value regarding any outside adult's "experience" with ASD kids. Nothing. 

 

I certainly try to explain the rules of behavior to Marco and Nico, but nine times out of ten it's less "bad behavior" and more "didn't understand the directions for good behavior." It also seems important, especially to Marco, to know why something isn't allowed. He is far more likely to internalize longer than just that moment if I say, "No playing with forks; forks can poke people," as opposed to simply, "No playing with forks."

[Crimson Wife]

Agreed. Marco needs absolutely explicit directions, given with as few words as possible. Right now, for his piano lessons, that means I sit right next to him and his piano teacher for the entirety of the lessons -- so that I can help coach his teacher. If she says, "Use fingers 2 and 3 to hit these two black keys," it's nice and explicit, but too many words for Marco to intake, so I rephrase it and show her how to place Marco's hands where she wants them and just say, "Touch these keys with 2 and 3."

 

It gets easier once the child's receptive language improves. When my DD was little, I had to do a lot of "telegraphic" speech. For your example, I would have had to break it into "these keys" (pause) "2 and 3" because she could only process short phrases.

 

Now she can process the longer verbal directions but still needs more explicit instructions than a typical child.

 

[Guest]

Agreed. Marco needs absolutely explicit directions, given with as few words as possible. Right now, for his piano lessons, that means I sit right next to him and his piano teacher for the entirety of the lessons -- so that I can help coach his teacher. If she says, "Use fingers 2 and 3 to hit these two black keys," it's nice and explicit, but too many words for Marco to intake, so I rephrase it and show her how to place Marco's hands where she wants them and just say, "Touch these keys with 2 and 3."

 

After the disaster with his last OT, I take nothing at face value regarding any outside adult's "experience" with ASD kids. Nothing.

 

I certainly try to explain the rules of behavior to Marco and Nico, but nine times out of ten it's less "bad behavior" and more "didn't understand the directions for good behavior." It also seems important, especially to Marco, to know why something isn't allowed. He is far more likely to internalize longer than just that moment if I say, "No playing with forks; forks can poke people," as opposed to simply, "No playing with forks."

I hear you! This is how I have done things with my 8 yr old who had and still has some language delays. My 8 yr old is also my impulsive boy, so knowing the why is one way that I guide him to use his own cognitive ability, one that helps him stop and think when he encounters the same or a similar situation at a later date.

[AimeeM]

It gets easier once the child's receptive language improves. When my DD was little, I had to do a lot of "telegraphic" speech. For your example, I would have had to break it into "these keys" (pause) "2 and 3" because she could only process short phrases.

 

Now she can process the longer verbal directions but still needs more explicit instructions than a typical child.

 

Hopefully we'll get there at some point with Marco. The clinics still can't decide if Marc's receptive language issues fall under OT or ST, so he's getting nothing (regarding services) to help with that right now. 

[Guest]

Hopefully we'll get there at some point with Marco. The clinics still can't decide if Marc's receptive language issues fall under OT or ST, so he's getting nothing (regarding services) to help with that right now.

This is awful, Aimee! I'm so sorry! If you saw the two books I listed in your thread, check out previews on Amazon for the *Visual Strategies for Improving Communication*. It is very inexpensive on Kindle. You might find it useful until this situation is resolved. It is actually giving me some ideas that I can adapt for my 8 yr old, even though we are past most of it at this stage. I always tweak everything I use anyway :) which is why I say, I read resources and then add what I think will work for each of my boys to my own approach. Keep in mind, my kids have only ever had what I have provided, up to now. And we have made lots of progress. My 8 yr old is further ahead in language than I could have ever hoped for back when he was diagnosed at the age of 4. You will figure things out, one way or another!

[PeterPan]

Agreed. Marco needs absolutely explicit directions, given with as few words as possible. Right now, for his piano lessons, that means I sit right next to him and his piano teacher for the entirety of the lessons -- so that I can help coach his teacher. If she says, "Use fingers 2 and 3 to hit these two black keys," it's nice and explicit, but too many words for Marco to intake, so I rephrase it and show her how to place Marco's hands where she wants them and just say, "Touch these keys with 2 and 3."

 

After the disaster with his last OT, I take nothing at face value regarding any outside adult's "experience" with ASD kids. Nothing. 

 

I certainly try to explain the rules of behavior to Marco and Nico, but nine times out of ten it's less "bad behavior" and more "didn't understand the directions for good behavior." It also seems important, especially to Marco, to know why something isn't allowed. He is far more likely to internalize longer than just that moment if I say, "No playing with forks; forks can poke people," as opposed to simply, "No playing with forks."

 

Just a total rabbit trail, but there are music therapists who specialize in autism who could work with him on that too. There's special curriculum they use for teaching them to play piano even. :)

[PeterPan]

Hopefully we'll get there at some point with Marco. The clinics still can't decide if Marc's receptive language issues fall under OT or ST, so he's getting nothing (regarding services) to help with that right now. 

 

Wow, that's the kind of mess that drives me to profanity. It's BOTH! It's all of the above. Like right now the ps wants to say his language issues should just have academic goals. And it's no, it's both. 

 

I think these gifted kids end up with holes and strengths in one place that make them think the foundational issues aren't there. They ARE there. It's just that he might be able to do some more advanced skill and still have the holes. 

[kbutton]

I disagree that people who work with kids can always tell. One of the reasons we're pulling mine out of school is teachers who chronically fail to comprehend that she isn't trying to be "disrespectful" even after they've been privy to loads and loads of detailed information about what's going on with her.

 

 

As someone who had taught many ASD kids in different environments, it is always better to know. Whenever I haven't been told up front it has caused more stress for all involved than if I'm told upfront. As you say, ASD kids need different techniques to be successful and the more frustrated the teacher/ leader gets, the worse the situation spirals. The info you gained in getting the diagnosis was helpful for you. It is the same for anyone who wants your DS to succeed.

 

We've had teachers/adults, etc. in each of these buckets--you just never know. Then there are the situations where the parents are in denial (or they refuse effective interventions), and they make it harder for parents to advocate for their kids because they burn out teachers/helpers. 

 

On the teacher/helping adult end, it drives me crazy when a parent won't give up the information, but yet if you don't ask just right, they get defensive or think that you don't want their child in class (this is a volunteer teacher perspective--Sunday School, VBS, etc.).

 

It's really hard as a teacher to do the right thing if you don't have information. Sometimes even as a friend--I have a friend whose kids are not typical, and I don't think they had good evals. The evals were late enough to only be mildly helpful to begin with. I can't watch her kids because I make the older one miserable, and the mom is all "Your kids are like this, so you know what to do." Well, what I do with mine, makes hers ill at ease. Sigh.

 

So, I think that talking to the swim teacher is the right response, and if it doesn't go well, then it's the teacher, not you!!! Keep advocating, and try to shrug off the frustrating responses when they occur. Also, for your son's own benefit, he might be able to tell that the teacher is having a positive or negative reaction, but he might now know why or be able to categorize the reaction in a more nuanced way. My son could say that someone was peeved at him, but he couldn't tell the different among various levels of peeved, angry, simply stern, no nonsense, etc. Realizing that people could correct him while not disliking him or being super angry was freeing to him. On the flip side, the same went for positive interaction. Someone finding him funny or cute was not a green light for anything goes because someone likes him. 

[Crimson Wife]

Hopefully we'll get there at some point with Marco. The clinics still can't decide if Marc's receptive language issues fall under OT or ST, so he's getting nothing (regarding services) to help with that right now. 

 

It is COMPLETELY out of the Scope of Practice for an Occupational Therapist to be working on speech and language issues, just as it would be out of the Scope of Practice for a SLP to be working on fine motor skills.

 

It gets crunchier with fields where the Scope of Practice overlaps, such as SLP vs. ABA or OT vs. ABA. But SLP vs. OT should be clear-cut and I would RUN from any clinic that has SLP's doing OT or OT's doing speech therapy.

 

[Guest]

It is COMPLETELY out of the Scope of Practice for an Occupational Therapist to be working on speech and language issues, just as it would be out of the Scope of Practice for a SLP to be working on fine motor skills.

Not Aimee but thank you for this! I was going to ask how they are explaining an OT's involvement in receptive language or any kind of language work for that matter (ours have been mostly expressive and less receptive issues) and was wondering if perhaps there is something I was missing. You just answered that for me.

[winterbaby]

The op's child is not being aggressive, not name calling, or anything like that. He just needs explicit instructions. That is what I'm reading!

 

Here's a quote from Temple Grandin:

 

"Using Teachable Moments to Learn

Manners, Social Skills, and Language

 

I was brought up in the 1950’s and my mother and all the other mothers in the neighborhood used “teachable moments†to teach children correct behavior. When a social or manners mistake was made, Mother NEVER screamed “No†or “Stop it.†Instead, she calmly gave me the instruction of what I should do. Below are some examples.

 

If I twirled my fork around above my head, she said, “Put it on your plate.â€

If I ate mashed potatoes with my fingers, she said, “Use the fork.â€

If I touched merchandise in a store, she said, “Only touch the things you are going to buy.â€

If I forgot to say “thank you†she would give me a cue and say, “You forgot to say pause.â€

 

In a day there are many “teachable moments.†At a hotel, I observed an excellent example of this. A little boy started to get on the elevator before the people in the elevator got off. His mom said, “You must wait for the other people to get out of the elevator before you get on.†She did not scream “No†when the child stepped forward towards the open elevator door. Instead, she calmly gave the instruction."

 

Here's the link with more:

http://www.templegrandin.com/temple_articles/teachable_moments.html

 

Sometimes I shout (not scream) "no" - or "stop" or "don't" or "wait" or "hold on" - because my child often doesn't comprehend that detailed instructions or explanations are instructions rather than, I dunno, just my opinion, information for her consideration as she carries on doing what she was going to do anyway. She has a lot of trouble with this concept and a lot of talk only makes it even harder for her to understand the simple fact that yes, there is one particular thing you're supposed to do here, now stop arguing and do it. Explanation and teaching often comes after the moment has passed and we can address it in a low-stress manner. Temple Grandin grew up in the 1950s so maybe it was different then but I don't see a lot of adults going around screaming commands at children without explanation. I think that is a bit of a straw man.

[Crimson Wife]

Not Aimee but thank you for this! I was going to ask how they are explaining an OT's involvement in receptive language or any kind of language work for that matter (ours have been mostly expressive and less receptive issues) and was wondering if perhaps there is something I was missing. You just answered that for me.

 

An OT could certainly work on following verbal directions, but it should be incorporated in an OT activity. Just like if as a SLP I helped a client with scissors or pencil grip as part of a craft activity to work on a speech and/or language goal. Incidental teaching is different than trying to provide treatment that is outside the clinician's Scope of Practice.

[Guest]

Sometimes I shout (not scream) "no" - or "stop" or "don't" or "wait" or "hold on" - because my child often doesn't comprehend that detailed instructions or explanations are instructions rather than, I dunno, just my opinion, information for her consideration as she carries on doing what she was going to do anyway. She has a lot of trouble with this concept and a lot of talk only makes it even harder for her to understand the simple fact that yes, there is one particular thing you're supposed to do here, now stop arguing and do it. Explanation and teaching often comes after the moment has passed and we can address it in a low-stress manner. Temple Grandin grew up in the 1950s so maybe it was different then but I don't see a lot of adults going around screaming commands at children without explanation. I think that is a bit of a straw man.

:lol: my son is the exact opposite. You tell him "stop" or "no" and that is when he will ignore you. Example, he likes removing his yoke from a fried egg. I do not have a problem with that. Using his hands to do that vs. his knife and fork, I have an issue with! So instead of saying "no touching the food with your hands" you say "use your fork". You have now given the child an explicit instruction. That is what she means.

 

I have also had to teach my husband to be more explicit with what he is asking our 8 yr old to do. At first he could not see the difference either, but there is a difference!

Edited June 2, 2017 by Guest

[Guest]

An OT could certainly work on following verbal directions, but it should be incorporated in an OT activity. Just like if as a SLP I helped a client with scissors or pencil grip as part of a craft activity to work on a speech and/or language goal. Incidental teaching is different than trying to provide treatment that is outside the clinician's Scope of Practice.

Yes, this definitely makes sense!

[Crimson Wife]

My child struggles with negation. So framing things in a positive manner ("use your fork") is more easily understood and complied with than the same request framed in a negative way ("don't use your fingers"). She's not trying to be naughty most of the time, she just has the receptive language difficulties getting in the way.

[winterbaby]

  instead of saying "no touching the food with your hands" you say "use your fork". You have now given the child an explicit instruction.

 

I'm having trouble seeing how those two things vary as to explicitness. One is negative, the other is positive. Usually when I'm sharply saying "stop!" it's because I have exhausted every such variation of how I might explain the request and it's still being ignored, not because she doesn't understand what I want but because she doesn't get that I really want her to do it and am not just talking for the sake of talking.

[Guest]

My child struggles with negation. So framing things in a positive manner ("use your fork") is more easily understood and complied with than the same request framed in a negative way ("don't use your fingers"). She's not trying to be naughty most of the time, she just has the receptive language difficulties getting in the way.

For my boy it depends on the situation, and yes, this often describes him as well. Negation is viewed as naughty by some, but I think we sometimes forget that they are still little kids. Even younger maturity wise. Working with them often has better results than going against that. At least in my books :) Edited June 2, 2017 by Guest