Update and question before today's ADOS

[macchiatto]

Hi, everyone. I apologize I haven't been around in a while. I'm not sure who will remember me.

Back story: My twin sons are 8. One of them, Leo, has been in and out of therapies since he was 2.5 (mild to moderate issues but an array of them). With his now-former DP, his list of Dx changed often but included hypotonia, anxiety, rigidities, global developmental delay, SPD, social communication disorder, developmental coordination disorder, the label "at risk for autism" and he has a seizure Hx and some possible metabolic issues. He fatigues easily.

He doesn't get services through the school system and has been waitlisted to restart OT and speech (for social skills and feeding) for over a year (finally re-started speech at least) and we've also been working to find a therapist for CBT for his anxiety (still working; had some frustrations there); so in a sense we've been out of the SN world for a while.

He was in EI and he had an IEP from age 3-4.5. When we moved to a different school district, we had him re-evaluated and had a very frustrating IEP meeting where he really should have qualified for services but didn't get them. mrsbuttinski was very helpful as I tried to process that and has given me a lot of great insights and suggestions over the years!

He's done well at school in terms of academics and behavior, so his teachers aren't concerned about him other than noting some anxiety and, this year, timidity/shyness and seems a little overwhelmed if he has to work 1:1 in a partner but does OK in small groups, and that he often plays alone at recess "but seems fine with that, seems happy." With his low energy and keen interest in academics he has no problem sitting and concentrating on academics for extended periods and is too anxious/conscientious to get in trouble. He and his brother were also 2 out of 5 second graders in their school to qualify for the GT program this past fall. That's a pull-out program one day a week and he thoroughly enjoys that.

He recently started seeing a new DP. She recommended a new PT eval and also agreed with CBT, OT and speech. She also thought it would be worthwhile to do a new ADOS since his last one was at age 5 and after being "at risk for autism" for years, it was time to rule it in or out conclusively at this point. 

His ADOS is this afternoon. I realize this is last minute, but any suggestions for questions to ask during the feedback portion of the appointment (whether he does or doesn't get the Dx)? Also, if he does get the Dx from a DP, should that change anything in terms of receiving services through the school system or should we stick with private providers? 

[macchiatto]

Well, he now has an ASD Dx.

I have so many feelings about this. We had a busy evening and got home really late so DH and I haven't really had time to process this, or figure out what/how to tell him about it.

[mrsbuttinski]

Apr 21, 2017 8:07:52 GMT -5 macchiatto said:

Hi, everyone. I apologize I haven't been around in a while. I'm not sure who will remember me.


I do. Welcome back to the fold. 

Back story: My twin sons are 8. One of them, Leo, has been in and out of therapies since he was 2.5 (mild to moderate issues but an array of them). With his now-former DP, his list of Dx changed often but included hypotonia, anxiety, rigidities, global developmental delay, SPD, social communication disorder, developmental coordination disorder, the label "at risk for autism" and he has a seizure Hx and some possible metabolic issues. He fatigues easily.

In a way, this is still what you are dealing with only now most of this is either subsumed by the ASD dx or a common comorbid. Some find comfort, or at least familiarity, in that these are still the core deficits with which you are already working. 

He doesn't get services through the school system and has been waitlisted to restart OT and speech (for social skills and feeding) for over a year (finally re-started speech at least) and we've also been working to find a therapist for CBT for his anxiety (still working; had some frustrations there); so in a sense we've been out of the SN world for a while.

He was in EI and he had an IEP from age 3-4.5. When we moved to a different school district, we had him re-evaluated and had a very frustrating IEP meeting where he really should have qualified for services but didn't get them. mrsbuttinski was very helpful as I tried to process that and has given me a lot of great insights and suggestions over the years!

He's done well at school in terms of academics and behavior, so his teachers aren't concerned about him other than noting some anxiety and, this year, timidity/shyness and seems a little overwhelmed if he has to work 1:1 in a partner but does OK in small groups, and that he often plays alone at recess "but seems fine with that, seems happy." With his low energy and keen interest in academics he has no problem sitting and concentrating on academics for extended periods and is too anxious/conscientious to get in trouble. He and his brother were also 2 out of 5 second graders in their school to qualify for the GT program this past fall. That's a pull-out program one day a week and he thoroughly enjoys that.

He recently started seeing a new DP. She recommended a new PT eval and also agreed with CBT, OT and speech. She also thought it would be worthwhile to do a new ADOS since his last one was at age 5 and after being "at risk for autism" for years, it was time to rule it in or out conclusively at this point. 


I'm glad the new DP took a closer look. Sometimes it takes some time for there to be clarity around this dx in brighter kids. Especially in a situation where a close sib provides scaffolding and services were offered early on because of delays.

His ADOS is this afternoon. I realize this is last minute, but any suggestions for questions to ask during the feedback portion of the appointment (whether he does or doesn't get the Dx)? Also, if he does get the Dx from a DP, should that change anything in terms of receiving services through the school system or should we stick with private providers? 

I realize I am late to this party, but I would ask the dev pedi what she thinks would benefit him in terms of school supports. Remember needs drive services but this dx gives context to behaviors that should make it easier for you to advocate for a more robust IEP. Two things that leapt off the screen at me were recess and working with a partner. He needs to do this to prepare him to take his place in the collaborative workplace of the 21st century. He needs to learn to interact socially in structured and unstructured settings and to function as part of a "team" to be successful as an adult. Recess and lunch are part of the educational day and do not let your LEA tell you otherwise- he needs to be able to advocate for his own ideas without taking over the group and to do his share when he didn't prevail in setting the agenda without being an arrogant jerk about it. This is a special challenge for the bright kid who is socially marginalized. 

Two caveats given the specifics of the presentation Leo has. Firstly, enjoy his academic prowess but don't dwell on it in a way that it is built up as a some sort of karmic compensation for all the areas where he isn't kicking ass. Best case scenario this leads to an obnoxious young person. Worst case scenario, he hits the wall. For most kids with ASD (at least I haven't met one who hasn't), there comes a time when the academic piece isn't all easy for them- for a lot, it's the transition to more abstract reasoning in the intermediate grades, for others it's the literature-based curriculum they struggle to comprehend given their poor ToM and for others it comes later when they aren't selected by the professor for the research project or the funded position at grad school. I met a many a while back whose wall came in his 40s when he failed to make partner and the "dumb people I knew in law school did". This can result in real depression; which is my second caveat. It's a common comorbid as kids get older. I know it seems especially hard in a family dynamic where there is a more socially successful sibling. Be very tuned to bullying and situations where the NT sib is forced into a situation where he has to demonstrate loyalty to either a brother or his friends. 

Speaking to the notion os success in a group, along with a good Social Thinking pragmatics/social skills program, it would be useful to think ahead to settings where your son can practice those skills apart from his twin. Team sports probably won't be the fit here, but a theater group, robotics club, cub scouts and eventually a musical ensemble can teach those same lessons of working together. 

[mrsbuttinski]

Coming back to add-

I think this is something to discuss with your son and then later his brother. But first it makes sense for you to start to wrap your head around it.

Most professionals I know suggest giving ownership using the correct terminology and framing the dx as matter-of-factly. A lot of people like this workbook which can be personalized to your DS's unique set of issues.

www.amazon.com/Autism-Explaining-Awareness-Functioning-Aspergers/dp/1935274910

[macchiatto]

Thank you, as always, for your thoughtful and thorough response. Much appreciated. The book you linked to looks great, too.

I also messaged the wonderful EI he got to keep til he turned 6. Her sense all along was that he was on the spectrum, though she and I were both concerned about professionals missing it b/c he always tended to shine 1:1 with a friendly adult plus (as you mentioned), the effects of having an NT twin and early intervention. (He'd been getting a bunch of therapies before he finally got in with a DP and had his first evaluation.) She said we can talk more but mentioned that she could hook us up with a service coordinator, which sounds great.

The DP also gave us info on getting him on the waiting list for ABA (shortage of providers in our area) and there's some type of support network for parents of kids with ASD that she gave us info on.

I wanted to share a little more about the eval ... He didn't want to go back for the ADOS without one of us, so the DP let me go. It was interesting to observe. One thing that jumped out at me was when she asked him all the questions about feelings, relationships, what makes someone a friend, etc., he really struggled with all of those, even though through much of the rest of the eval his interactions seemed closer to typical.

When she went over the results with DH and me, she talked through his strengths and also the areas that led to points on his ADOS. (He scored a 10.) e.g. His eye contact was good at times, but inconsistent. Gestures and facial expressions were both pretty limited. He did demonstrate things like shared enjoyment. Reciprocity was also limited (he'd had some progress with both that and eye contact with social skills therapy, but then was waitlisted for over a year to restart it when we lost his last SLP). So was his insight into others' feelings and reactions.

She then went through all the DSM-5 criteria with us and explained that he does meet a lot of the criteria, but that he's mild/borderline (which definitely makes sense). She said she could honestly make an argument either way for whether he quite met criteria or not, but that the one thing it came down to, that she wanted our input on, was if these symptoms were causing clinically significant impairment in his daily life. She talked through with us what that means, and basically the implications of whether or not he gets the Dx.

It felt strange in a way that the final decision was up to us in a sense (though I realize parent report factors in significantly in general). Based on conversations I've had in the past--with his EI, with a good friend who's a child psyc, with DH, here, etc.--it seemed to make the most sense to go with the Dx. It is mild, but it does seem to cause impairment (outside of school, and our concern is that w/the current trajectory, it will cause more problems in school over time) and we think the added services he can receive as a result will hopefully benefit him. I think that's part of what I'm processing--that after this being a concern/possibility for most of his life, and all the evals and ups and downs we've been through with him, that in the end the final decision of whether he's on the spectrum or not was up to us.

I'm kind of thinking out loud/processing here. At this point we're not planning to tell most of our friends/family, at least for now, so it's good to have a safe place to share.

And a related question: When I asked her about what I noticed of him having such difficulty talking about anything feelings-related or relationship-related, she explained that those questions aren't factored into the scoring but that his answers did concern her. What I didn't think to ask was what type(s) of therapies really help with difficulties in those two areas? Also, how much of what I've listed should I bring up to his new (private) SLP to add to his treatment plan with her?

[mrsbuttinski]

Apr 22, 2017 18:19:50 GMT -5 macchiatto said:

Thank you, as always, for your thoughtful and thorough response. Much appreciated. The book you linked to makes sense, too.

I also messaged the wonderful EI he got to keep til he turned 6. Her sense all along was that he was on the spectrum, though she and I were both concerned about professionals missing it b/c he always tended to shine 1:1 with a friendly adult plus (as you mentioned), the effects of having an NT twin and early intervention. (He'd been getting a bunch of therapies before he finally got in with a DP and had his first evaluation.) She said we can talk more but mentioned that she could hook us up with a service coordinator, which sounds great.

DS always did well 1:1 with adults. He was only a year younger than Leo when he did his dev pedi eval. One difference? He would, and did happily ditch us, to go off with the nice ladies from the clinic to do some tests. 

The DP also gave us info on getting him on the waiting list for ABA (shortage of providers in our area) and there's some type of support network for parents of kids with ASD that she gave us info on.


Why ABA? Given your DS's presentation and age at dx, I would have questions about ABA. It can be doubly difficult to find a BCBA experienced in working with someone who may be smarter than they are intellectually. ABA can be great for anyone on spectrum to teach rote skills or to fade dysfunctional behaviors, but it trains it doesn't really teach skills that can be globalized to new or novel situations. 

As a result there isn't much out there about ABA and higher functioning individuals. You might want to look at this book-


www.amazon.com/Teaching-Asperger-Syndrome-Real-Life-Independence/dp/0307588955


and check out the author's website-


www.pattyrbashe.com/index.htm


Given Leo's social difficulties, you might also consider RDI and Michelle Garcia Winner's "Social Thinking" programs. DS did "thinking About You, Thinking About Me" which was really helpful for understanding that others don't think as he does. CBT and CSIT would also be appropriate for most given the dx. 

CSIT is similar to RDI.


www.amazon.com/Parenting-Your-Asperger-Child-Individualized/dp/0399530703

I wanted to share a little more about the eval ... He didn't want to go back for the ADOS without one of us, so the DP let me go. It was interesting to observe. One thing that jumped out at me was when she asked him all the questions about feelings, relationships, what makes someone a friend, etc., he really struggled with all of those, even though through much of the rest of the eval his interactions seemed closer to typical.

When she went over the results with DH and me, she talked through his strengths and also the areas that led to points on his ADOS. (He scored a 10.) e.g. His eye contact was good at times, but inconsistent. Gestures and facial expressions were both pretty limited. He did demonstrate things like shared enjoyment. Reciprocity was also limited (he'd had some progress with both that and eye contact with social skills therapy, but then was waitlisted for over a year to restart it when we lost his last SLP). So was his insight into others' feelings and reactions.

She then went through all the DSM-5 criteria with us and explained that he does meet a lot of the criteria, but that he's mild/borderline (which definitely makes sense). She said she could honestly make an argument either way for whether he quite met criteria or not, but that the one thing it came down to, that she wanted our input on, was if these symptoms were causing clinically significant impairment in his daily life. She talked through with us what that means, and basically the implications of whether or not he gets the Dx.

It felt strange in a way that the final decision was up to us in a sense (though I realize parent report factors in significantly in general). Based on conversations I've had in the past--with his EI, with a good friend who's a child psyc, with DH, here, etc.--it seemed to make the most sense to go with the Dx. It is mild, but it does seem to cause impairment (outside of school, and our concern is that w/the current trajectory, it will cause more problems in school over time) and we think the added services he can receive as a result will hopefully benefit him. I think that's part of what I'm processing--that after this being a concern/possibility for most of his life, and all the evals and ups and downs we've been through with him, that in the end the final decision of whether he's on the spectrum or not was up to us.


I suspect, if you weren't open to accepting the dx at this time, the clinician would have made a case for why it could benefit him. It's a difficult bit to news to deliver, especially when the child is older and not significantly impaired at this point in time. I know a few families who "declined the dx" the first time it was offered and a couple who also shopped around for one they liked better. Back in the day, Aspergers wasn't generally offered if there were speech and adaptive delays, even if the child eventually "caught up". But there were always a few docs who would be willing to give the "upgrade" if the parents wanted it. IME, when IQ and level of atypicality are similar, the early talkers don't necessarily do better than those who talked later. 


I think you are wise to accept it and use the label to fine tune a plan of intervention to give Leo the tools to be his best self. There's also the notion of having a Plan B- making plans for a successful outcome while also having a plan in case there are new comorbids down the line that interfere with independence in adulthood. The reality is that only 15% of the adults dxd with what was formerly called Aspergers have full time employment. This number is pretty consistent in both the US and UK and remains pretty much where it was in 2004 when the dx was only in the DSM for 10 years and the average age at dx was 11-12. Most of my Asperger mom-friend's kids are doing really well- but there is one who developed intractable anxiety and ended up on SSI- having the dx early on streamlined the paperwork to make that happen. The dx also allows you to set aside a special needs trust in your estate planning. 

I'm kind of thinking out loud/processing here. At this point we're not planning to tell most of our friends/family, at least for now, so it's good to have a safe place to share.

Always OK to share here. I'd probably hold off on telling anyone who doesn't need to know. If nothing else, it'll prevent people offering stupid opinions from a place of ignorance. It also keeps folks from sharing with their kids as if your DS is some sort of kumbaya life-lesson in diversity and then those kids being shits to your kid. We told DS's scout leaders who would be with him when we weren't. LOL, most of them forgot and had to be reminded because DS can be very social and subtle at times. He's also very funny which surprises people. 

And a related question: When I asked her about what I noticed of him having such difficulty talking about anything feelings-related or relationship-related, she explained that those questions aren't factored into the scoring but that his answers did concern her. What I didn't think to ask was what type(s) of therapies really help with difficulties in those two areas? Also, how much of what I've listed should I bring up to his new (private) SLP to add to his treatment plan with her?

See the paragraph above. RDI/CSIT and MGW's "Social Thinking" teach those kinds of skills. This is all related to empathy and Theory of Mind- the ability to "get" what another person is thinking a feeling even if it is 180* different than what you would. 

For the SLP, I would want MGW based Social Thinking to help him 1. understand that others think differently, 2. that others form opinions about him based on what he says and does and 3. be able to improve his accuracy about what others feel. IME it can be hard to put together a robust and effective social group outside of school or camp settings. In your shoes, I would be looking for a Social Skills camp and sending Leo solo this summer and talking to the school's SLP about social skills because in school, during recess and projects, is where his immediate needs lie. If you can make a MGW conference it will be useful. Her blog is great, too. 


www.socialthinking.com/

[jmski]

I felt my son's diagnosis was left up to me too. The doctor went over the specialists' results and then said it could be argued either way. I said that I wouldn't have gone through the process of all the paperwork and multiple visits if I didn't think he needed the diagnosis.
It was the right decision.

[macchiatto]

Apr 23, 2017 7:15:17 GMT -5 mrsbuttinski said:

Apr 22, 2017 18:19:50 GMT -5 macchiatto said:

Thank you, as always, for your thoughtful and thorough response. Much appreciated. The book you linked to makes sense, too.

I also messaged the wonderful EI he got to keep til he turned 6. Her sense all along was that he was on the spectrum, though she and I were both concerned about professionals missing it b/c he always tended to shine 1:1 with a friendly adult plus (as you mentioned), the effects of having an NT twin and early intervention. (He'd been getting a bunch of therapies before he finally got in with a DP and had his first evaluation.) She said we can talk more but mentioned that she could hook us up with a service coordinator, which sounds great.

DS always did well 1:1 with adults. He was only a year younger than Leo when he did his dev pedi eval. One difference? He would, and did happily ditch us, to go off with the nice ladies from the clinic to do some tests. 

The DP also gave us info on getting him on the waiting list for ABA (shortage of providers in our area) and there's some type of support network for parents of kids with ASD that she gave us info on.


Why ABA? Given your DS's presentation and age at dx, I would have questions about ABA. It can be doubly difficult to find a BCBA experienced in working with someone who may be smarter than they are intellectually. ABA can be great for anyone on spectrum to teach rote skills or to fade dysfunctional behaviors, but it trains it doesn't really teach skills that can be globalized to new or novel situations. 

Thanks for that feedback! I'll ask more about that. His EI also offered to meet w/us to talk about services available, how to get us set up with service coordination, etc., so I'll get her take on that, too. I remembered you saying a while back that ABA could be helpful for kids like him, too, but I'm guessing that must have been several years ago and no longer applies.  

As a result there isn't much out there about ABA and higher functioning individuals. You might want to look at this book-


www.amazon.com/Teaching-Asperger-Syndrome-Real-Life-Independence/dp/0307588955


and check out the author's website-


www.pattyrbashe.com/index.htm

Thank you for the recs! I'll check those out.

Given Leo's social difficulties, you might also consider RDI and Michelle Garcia Winner's "Social Thinking" programs. DS did "thinking About You, Thinking About Me" which was really helpful for understanding that others don't think as he does. CBT and CSIT would also be appropriate for most given the dx. 

CSIT is similar to RDI.


www.amazon.com/Parenting-Your-Asperger-Child-Individualized/dp/0399530703


Thank you! Is it hard to find providers who are trained in these curricula, e.g. MGW's stuff? Is this done by a clinical counselor or an SLP? Do they need special certification for these or is it more something I request whoever's working with him look into using with him?

I wanted to share a little more about the eval ... He didn't want to go back for the ADOS without one of us, so the DP let me go. It was interesting to observe. One thing that jumped out at me was when she asked him all the questions about feelings, relationships, what makes someone a friend, etc., he really struggled with all of those, even though through much of the rest of the eval his interactions seemed closer to typical.

When she went over the results with DH and me, she talked through his strengths and also the areas that led to points on his ADOS. (He scored a 10.) e.g. His eye contact was good at times, but inconsistent. Gestures and facial expressions were both pretty limited. He did demonstrate things like shared enjoyment. Reciprocity was also limited (he'd had some progress with both that and eye contact with social skills therapy, but then was waitlisted for over a year to restart it when we lost his last SLP). So was his insight into others' feelings and reactions.

She then went through all the DSM-5 criteria with us and explained that he does meet a lot of the criteria, but that he's mild/borderline (which definitely makes sense). She said she could honestly make an argument either way for whether he quite met criteria or not, but that the one thing it came down to, that she wanted our input on, was if these symptoms were causing clinically significant impairment in his daily life. She talked through with us what that means, and basically the implications of whether or not he gets the Dx.

It felt strange in a way that the final decision was up to us in a sense (though I realize parent report factors in significantly in general). Based on conversations I've had in the past--with his EI, with a good friend who's a child psyc, with DH, here, etc.--it seemed to make the most sense to go with the Dx. It is mild, but it does seem to cause impairment (outside of school, and our concern is that w/the current trajectory, it will cause more problems in school over time) and we think the added services he can receive as a result will hopefully benefit him. I think that's part of what I'm processing--that after this being a concern/possibility for most of his life, and all the evals and ups and downs we've been through with him, that in the end the final decision of whether he's on the spectrum or not was up to us.


I suspect, if you weren't open to accepting the dx at this time, the clinician would have made a case for why it could benefit him. It's a difficult bit to news to deliver, especially when the child is older and not significantly impaired at this point in time. I know a few families who "declined the dx" the first time it was offered and a couple who also shopped around for one they liked better. Back in the day, Aspergers wasn't generally offered if there were speech and adaptive delays, even if the child eventually "caught up". But there were always a few docs who would be willing to give the "upgrade" if the parents wanted it. IME, when IQ and level of atypicality are similar, the early talkers don't necessarily do better than those who talked later. 

That makes sense. Thanks for your perspective! 

I think you are wise to accept it and use the label to fine tune a plan of intervention to give Leo the tools to be his best self. There's also the notion of having a Plan B- making plans for a successful outcome while also having a plan in case there are new comorbids down the line that interfere with independence in adulthood. The reality is that only 15% of the adults dxd with what was formerly called Aspergers have full time employment. This number is pretty consistent in both the US and UK and remains pretty much where it was in 2004 when the dx was only in the DSM for 10 years and the average age at dx was 11-12. Most of my Asperger mom-friend's kids are doing really well- but there is one who developed intractable anxiety and ended up on SSI- having the dx early on streamlined the paperwork to make that happen. The dx also allows you to set aside a special needs trust in your estate planning. 

Thank you. I felt a little bit of guilt/responsibility about being the one to make that choice, so it helps to get confirmation. 

I let DH read this thread and the stats on employment definitely jumped out to him. I think it's good to be mindful of. The DP said she thinks long-term, Leo will do well and he has come a long way w/the therapies he's already had the past 6 years. It's hard for me to imagine what he'll be like as a young adult but I'm glad we're doing everything we can to, as you put it, give him the tools he needs to be his best self.

I think DH is trying to wrap his mind around how much of what he knows about ASD applies to Leo, since he definitely sees Leo has a variety of challenges but doesn't fit the picture he had in his mind of ASD or Asperger's. (This is probably somewhat common; I've spent a lot more time interacting with fellow parents in the SN world, especially on message boards, I've had a lot more interaction with Leo's therapists, etc., and have some familiarity with the DSM because of my field, so that's been helpful for me.)


I'm kind of thinking out loud/processing here. At this point we're not planning to tell most of our friends/family, at least for now, so it's good to have a safe place to share.

Always OK to share here. I'd probably hold off on telling anyone who doesn't need to know. If nothing else, it'll prevent people offering stupid opinions from a place of ignorance. It also keeps folks from sharing with their kids as if your DS is some sort of kumbaya life-lesson in diversity and then those kids being shits to your kid. We told DS's scout leaders who would be with him when we weren't. LOL, most of them forgot and had to be reminded because DS can be very social and subtle at times. He's also very funny which surprises people. 

Thank you! And excellent points! More people are aware of his hypotonia and his anxiety (to an extent) because those are more obvious (and in some ways, easier to understand). 

DH is also wanting to hold off on telling either Leo (the DP had mentioned one option at this point is to talk more about the specific areas he needs help with--to explain why the new therapies) or Oliver for a while. I'm not sure how I feel about that. I understand his concerns about Leo's self-consciousness about being different and concerns about him basing his identity on it or being negatively affected by media portrayals or stereotypes, but I want to balance that with Leo feeling lied to or held out on if he finds out too much later. I'm also not sure how Oliver would handle this info or how well he'd understand why he's not supposed to go around telling other people.

And a related question: When I asked her about what I noticed of him having such difficulty talking about anything feelings-related or relationship-related, she explained that those questions aren't factored into the scoring but that his answers did concern her. What I didn't think to ask was what type(s) of therapies really help with difficulties in those two areas? Also, how much of what I've listed should I bring up to his new (private) SLP to add to his treatment plan with her?

See the paragraph above. RDI/CSIT and MGW's "Social Thinking" teach those kinds of skills. This is all related to empathy and Theory of Mind- the ability to "get" what another person is thinking a feeling even if it is 180* different than what you would. 

For the SLP, I would want MGW based Social Thinking to help him 1. understand that others think differently, 2. that others form opinions about him based on what he says and does and 3. be able to improve his accuracy about what others feel. IME it can be hard to put together a robust and effective social group outside of school or camp settings. In your shoes, I would be looking for a Social Skills camp and sending Leo solo this summer and talking to the school's SLP about social skills because in school, during recess and projects, is where his immediate needs lie. If you can make a MGW conference it will be useful. Her blog is great, too. 

Good to know, thanks! And I'm glad you mentioned social skills camps. I had forgotten that at Leo's initial visit with this DP in March, she had mentioned those as a possibility. I will look into them. Trying to get him to go (if he doesn't know anyone else going) is going to be tough; he has been telling me for months that he doesn't want to go to any camps this summer. :/ But we'll work on that! 
www.socialthinking.com/

[macchiatto]

Apr 22, 2017 13:44:11 GMT -5 mrsbuttinski said:

Coming back to add-

I think this is something to discuss with your son and then later his brother. But first it makes sense for you to start to wrap your head around it.

Most professionals I know suggest giving ownership using the correct terminology and framing the dx as matter-of-factly. A lot of people like this workbook which can be personalized to your DS's unique set of issues.

www.amazon.com/Autism-Explaining-Awareness-Functioning-Aspergers/dp/1935274910

And thank you for the book rec. This looks great!

[macchiatto]

Apr 23, 2017 20:09:07 GMT -5 jmski said:

I felt my son's diagnosis was left up to me too. The doctor went over the specialists' results and then said it could be argued either way. I said that I wouldn't have gone through the process of all the paperwork and multiple visits if I didn't think he needed the diagnosis.
It was the right decision.

Thank you for sharing that! It helps to hear from someone with a similar experience. How old was your son at Dx?

[jmski]

He was 5. He's 9 now. Doing well. He has an IEP for working on some social skills but is in general ed 3rd grade all day. He talks not stop even on medication but he has made friends and is able to do his work independently.

[macchiatto]

Apr 25, 2017 18:47:48 GMT -5 jmski said:

He was 5. He's 9 now. Doing well. He has an IEP for working on some social skills but is in general ed 3rd grade all day. He talks not stop even on medication but he has made friends and is able to do his work independently.

That's great! Glad he's doing so well.

[mrsbuttinski]

Apr 22, 2017 at 7:19pm macchiatto said:

Sorry for the late reply; I've been out of town and crazy busy.



Thanks for that feedback! I'll ask more about that. His EI also offered to meet w/us to talk about services available, how to get us set up with service coordination, etc., so I'll get her take on that, too. I remembered you saying a while back that ABA could be helpful for kids like him, too, but I'm guessing that must have been several years ago and no longer applies.

I would be careful around the EI person. I can appreciate that you trust her and such, but sometimes this isn't a great choice. YMMV. She could be limited in her scope given that her area of expertise is going to be with children under age 3 and may be more focused on her area of expertise rather than a multidisciplinary approach. You need someone with a long-term view who knows the local schools, camps, etc.

Does the dev pedi have a social worker? Does it make sense to reach out to the school with the letter explaining the dx and services suggested by the dev pedi?

I would keep an open mind about the ABA, but I would want to know what specifically they'd be working on. It can be great for teaching specific skills or fading stigmatizing behaviors- but IMHO- it's not going to teach a rubric for how to process a social situation when the other person goes off script.


Thank you! Is it hard to find providers who are trained in these curricula, e.g. MGW's stuff? Is this done by a clinical counselor or an SLP? Do they need special certification for these or is it more something I request whoever's working with him look into using with him?

You would probably have the best luck finding someone who is able to do RDI. They list clinicians here-

www.rdiconnect.com/

Social Thinking was developed by and for SLPs. I have heard of others doing it with kids with mixed results. I know a few parents who took this one themselves because there wasn't an appropriate professional trained to deliver it local to them. MGW's conferences are terrific and you may even find some online.

I let DH read this thread and the stats on employment definitely jumped out to him. I think it's good to be mindful of. The DP said she thinks long-term, Leo will do well and he has come a long way w/the therapies he's already had the past 6 years. It's hard for me to imagine what he'll be like as a young adult but I'm glad we're doing everything we can to, as you put it, give him the tools he needs to be his best self.

I think DH is trying to wrap his mind around how much of what he knows about ASD applies to Leo, since he definitely sees Leo has a variety of challenges but doesn't fit the picture he had in his mind of ASD or Asperger's. (This is probably somewhat common; I've spent a lot more time interacting with fellow parents in the SN world, especially on message boards, I've had a lot more interaction with Leo's therapists, etc., and have some familiarity with the DSM because of my field, so that's been helpful for me.)

It's harder for dads anyway. They tend to have less experience and exposure with what typical kids do which can lead to a kind of blissful ignorance. Getting dad out alone with him to birthday parties, cub scouts, karate, etc could really help him come to terms with how Leo is different.

DH is also wanting to hold off on telling either Leo (the DP had mentioned one option at this point is to talk more about the specific areas he needs help with--to explain why the new therapies) or Oliver for a while. I'm not sure how I feel about that. I understand his concerns about Leo's self-consciousness about being different and concerns about him basing his identity on it or being negatively affected by media portrayals or stereotypes, but I want to balance that with Leo feeling lied to or held out on if he finds out too much later. I'm also not sure how Oliver would handle this info or how well he'd understand why he's not supposed to go around telling other people.

DS's dev pedi would suggest telling asap. He compares it to adoption- it is a part of the child's history, not something of which to be ashamed- that ideally would be dealt with matter-of-factly so early that the child doesn't recall a "big reveal".

Sure, you can talk about specific challenges and differences without throwing down the "A" word, but that sends a message, too, that autism is so awful we can't speak its name. You are kind of screwed around this situation either way. FWIW, hell hath no fury like the adult on spectrum who only gets a name for their challenges in life when they happen upon medical paperwork pertaining to their dx when cleaning out a dead mother's home. And then there's the whole notion that, at some point, this is Leo's story and eventually- if all goes well- his responsibility which will be necessary by middle school. Should he get an IEP at some point, he, too, will be a member of the CST/CSE by the time transition planning starts the year he turns 16.

I wouldn't worry so much about media portrayals of ASD. Yes, they can be ridiculous and even insulting, but that's true of pretty much any demographic. DS has perfected the side-eye and at times takes on the role of brand ambassador.

Keep in mid, too, the old adage that if you do not offer a label, one will be provided for him.

As for Oliver, that's simple- it's not his story to tell. At some point, I feel he would need to know the label so he can understand. I mean, he knows his brother is different than other kids.

It's no surprised to me that the absolute nastiest bully my own DS ever encountered with the socially capable younger brother of one of DS's social skills classmates. The parents there chose not to share the dx with either boy or the rest of the family. The younger brother homed in on DS being different and humiliated him on facebook and a private youtube channel as a kind of whipping boy because his mother would have killed him if he was caught being mean to his brother. I was able to shut down the facebook stuff; I shared screenshots with the marching band teacher which likely resulted in the kid not getting the coveted drum major position and not getting into his first choice band program. He was certainly more talented than other kids who did serve as drum major and who auditioned for the Blue Band and got in.

The other unintended consequence is that his grandmother, who is pretty obnoxious, was quite vocal about how rude her grandson on spectrum is and how disappointed she is by him compared to his sparkly brother and star athlete sister. It's sort of weid that I know this about the kid and neither brother, grandmother or even the kid himself, know the backstory.


Good to know, thanks! And I'm glad you mentioned social skills camps. I had forgotten that at Leo's initial visit with this DP in March, she had mentioned those as a possibility. I will look into them. Trying to get him to go (if he doesn't know anyone else going) is going to be tough; he has been telling me for months that he doesn't want to go to any camps this summer. :/ But we'll work on that!


What is this "try" of which you speak?

If you can afford it, I'd even look at residence camps because nothing grows a kid like being out on his own at camp.

[macchiatto]

Apr 28, 2017 6:04:03 GMT -5 mrsbuttinski said:

Apr 22, 2017 at 7:19pm macchiatto said:

Sorry for the late reply; I've been out of town and crazy busy.

I understand. Thanks for your time! Hope things settle down for you soon!

Thanks for that feedback! I'll ask more about that. His EI also offered to meet w/us to talk about services available, how to get us set up with service coordination, etc., so I'll get her take on that, too. I remembered you saying a while back that ABA could be helpful for kids like him, too, but I'm guessing that must have been several years ago and no longer applies.

I would be careful around the EI person. I can appreciate that you trust her and such, but sometimes this isn't a great choice. YMMV. She could be limited in her scope given that her area of expertise is going to be with children under age 3 and may be more focused on her area of expertise rather than a multidisciplinary approach. You need someone with a long-term view who knows the local schools, camps, etc.

Fair point! I talked to her the other day and she gave me some information about service coordination that's available for kids this age and we talked a bit about how to tell the boys, implications for school, etc. I'll talk to a few different people since you're right, she works with 0-6. (Some kids like Leo can get extended eligibility to keep EIs til 6.)

Does the dev pedi have a social worker? Does it make sense to reach out to the school with the letter explaining the dx and services suggested by the dev pedi?

Not that I know of. She did call me back (herself! about the social skills camp she recommends. His regular pedi has a special needs coordinator who I plan to call as well (especially for a new OT rec since he's been waitlisted at his SLP/PT agency for over a year and they're having trouble finding a new OT). We're also friends with the other DP at the practice. I'm mindful of dual roles but since she's very accessible, I might pick her brain at some point.

I've been wondering about school. What do you think is the best approach with them given that they really didn't have many concerns about him before this? Should I meet with the school counselor or psychologist about it? 

I would keep an open mind about the ABA, but I would want to know what specifically they'd be working on. It can be great for teaching specific skills or fading stigmatizing behaviors- but IMHO- it's not going to teach a rubric for how to process a social situation when the other person goes off script.

That's good to know. The waiting list is pretty long. She did say if we decide against it by the time he reaches the top of the list, that's always fine, too! Maybe at that point I'd just explain what his issues are and see what they think they can help him with? 

Thank you! Is it hard to find providers who are trained in these curricula, e.g. MGW's stuff? Is this done by a clinical counselor or an SLP? Do they need special certification for these or is it more something I request whoever's working with him look into using with him?

You would probably have the best luck finding someone who is able to do RDI. They list clinicians here-

www.rdiconnect.com/

Social Thinking was developed by and for SLPs. I have heard of others doing it with kids with mixed results. I know a few parents who took this one themselves because there wasn't an appropriate professional trained to deliver it local to them. MGW's conferences are terrific and you may even find some online.

Good to know, thanks!

I let DH read this thread and the stats on employment definitely jumped out to him. I think it's good to be mindful of. The DP said she thinks long-term, Leo will do well and he has come a long way w/the therapies he's already had the past 6 years. It's hard for me to imagine what he'll be like as a young adult but I'm glad we're doing everything we can to, as you put it, give him the tools he needs to be his best self.

I think DH is trying to wrap his mind around how much of what he knows about ASD applies to Leo, since he definitely sees Leo has a variety of challenges but doesn't fit the picture he had in his mind of ASD or Asperger's. (This is probably somewhat common; I've spent a lot more time interacting with fellow parents in the SN world, especially on message boards, I've had a lot more interaction with Leo's therapists, etc., and have some familiarity with the DSM because of my field, so that's been helpful for me.)

It's harder for dads anyway. They tend to have less experience and exposure with what typical kids do which can lead to a kind of blissful ignorance. Getting dad out alone with him to birthday parties, cub scouts, karate, etc could really help him come to terms with how Leo is different.

Yeah, that makes sense. 

DH is also wanting to hold off on telling either Leo (the DP had mentioned one option at this point is to talk more about the specific areas he needs help with--to explain why the new therapies) or Oliver for a while. I'm not sure how I feel about that. I understand his concerns about Leo's self-consciousness about being different and concerns about him basing his identity on it or being negatively affected by media portrayals or stereotypes, but I want to balance that with Leo feeling lied to or held out on if he finds out too much later. I'm also not sure how Oliver would handle this info or how well he'd understand why he's not supposed to go around telling other people.

DS's dev pedi would suggest telling asap. He compares it to adoption- it is a part of the child's history, not something of which to be ashamed- that ideally would be dealt with matter-of-factly so early that the child doesn't recall a "big reveal".

That's what makes the most sense to me, too. 


Sure, you can talk about specific challenges and differences without throwing down the "A" word, but that sends a message, too, that autism is so awful we can't speak its name. You are kind of screwed around this situation either way. FWIW, hell hath no fury like the adult on spectrum who only gets a name for their challenges in life when they happen upon medical paperwork pertaining to their dx when cleaning out a dead mother's home. And then there's the whole notion that, at some point, this is Leo's story and eventually- if all goes well- his responsibility which will be necessary by middle school. Should he get an IEP at some point, he, too, will be a member of the CST/CSE by the time transition planning starts the year he turns 16.

That makes a lot of sense to me. 

I wouldn't worry so much about media portrayals of ASD. Yes, they can be ridiculous and even insulting, but that's true of pretty much any demographic. DS has perfected the side-eye and at times takes on the role of brand ambassador.

Good point! And good for your DS.  

Keep in mid, too, the old adage that if you do not offer a label, one will be provided for him.

As for Oliver, that's simple- it's not his story to tell. At some point, I feel he would need to know the label so he can understand. I mean, he knows his brother is different than other kids.

True. And that's what EI and I talked about, helping him understand that this is Leo's story, not his to share. Wasn't sure at what age it's realistic to expect a kid to understand that and be trustworthy keeping someone else's confidences. We did have the conversation with both boys (separately) several years ago explaining the hypotonia and anxiety, and that he's needed some therapy for social skills and has some sensory processing issues, but that's it (and really, we didn't have a clear Dx beyond that until last Friday). 

It's no surprised to me that the absolute nastiest bully my own DS ever encountered with the socially capable younger brother of one of DS's social skills classmates. The parents there chose not to share the dx with either boy or the rest of the family. The younger brother homed in on DS being different and humiliated him on facebook and a private youtube channel as a kind of whipping boy because his mother would have killed him if he was caught being mean to his brother. I was able to shut down the facebook stuff; I shared screenshots with the marching band teacher which likely resulted in the kid not getting the coveted drum major position and not getting into his first choice band program. He was certainly more talented than other kids who did serve as drum major and who auditioned for the Blue Band and got in.

The other unintended consequence is that his grandmother, who is pretty obnoxious, was quite vocal about how rude her grandson on spectrum is and how disappointed she is by him compared to his sparkly brother and star athlete sister. It's sort of weid that I know this about the kid and neither brother, grandmother or even the kid himself, know the backstory.

Ugh. Yeah, I can see that. But I'm so sorry your DS had to deal with that.  

Good to know, thanks! And I'm glad you mentioned social skills camps. I had forgotten that at Leo's initial visit with this DP in March, she had mentioned those as a possibility. I will look into them. Trying to get him to go (if he doesn't know anyone else going) is going to be tough; he has been telling me for months that he doesn't want to go to any camps this summer. :/ But we'll work on that!


What is this "try" of which you speak?

Poor wording. We would make him go. We just need to figure out how best to help him deal with his anticipatory anxiety and rigidity.

If you can afford it, I'd even look at residence camps because nothing grows a kid like being out on his own at camp.
Ooh, I hadn't thought about that yet at this age but I can see how that would be really helpful. We can't swing that this year but we'll do the day camp DP recommended this year and aim for a residence camp the following year.