Gifted Issues Discussion homepage Forums Twice Exceptional Two sons, varying amounts of ASD and giftedness

I have two boys, both displaying autistic spectrum characteristics. Younger son is the more autistic of the two, and he also appears to have some giftedness, but his verbal language skills are atypical and idiosyncratic, making it harder to assess his intelligence. Of our two, he is by far the easier for getting help, accomodations, and general understanding.

The child I am more confused on how to help ds8, who is both more withdrawn and harder to dx. He has neurotypical verbal language skills -- not gifted or delayed/atypical. He spends most of his time lost in his own thoughts, shuts down completely when he's stressed or overstimulated, and he hates attention. He does not transition well, he has sensory avoidance issues, and he has fine motor problems. Even though I have concerns about how far/often he disengages at school, getting extra help is very difficult, because he presents as quiet and smart. Although he is always difficult for the regular ed teacher to manage, because he's always lagging behind. He does not get more engaged if the class work is more challenging, either.

Two years ago we had him evaluated. I know he did at least a partial WISC, but all his report says is:
Verbal Comprehension 75th%ile
Perceptual Reasoning 99th%ile
Working Memory 81st%ile
Processing Speed 34th%ile
and then it says, "demonstrated very superior nonverbal reasoning and problem-solving and average picture concepts. He earned the highest possible score on completion of matrices (Matrix Reasoning SS=19) and extremely high on Block Design (SS=17)."

He was dxed with a whole lot of nothing: Uneven Cognitive Development, Disruptive Behavior Disorder (left over from his tendency to meltdown during transitions two years ago), and Lack of coordination.

Today he told me his MAP scores as he remembers them from last week. Now, granted, he could have remembered them wrong, we'll know soon enough. His memory is spotty, although usually it's very good at remembering numbers. He self-reports a 230 in Math (3 standard devs above the mean) and 219 in Reading (2 standard devs above the mean).

We are in the process of having a different psychologist do a full WISC and other test, so we are equipped with more information.

Anyone have any suggestions? Things we should be doing?

What are you doing for him now-- any therapies in place outside of school? Does he have any formal diagnosis? Who is evaluating him now-- do they specialize in ASDs? We found that people who were not autism specialists were very poorly equipped to identify ASD in a gifted child-- they tended to brush our DS off as "quirky," just because his verbal abilities masked his disability, which sounds similar to what has happened to your DS.

I would approach this two ways: put key therapies into place outside school, while also working to get both gifted and special ed working for him in school. 8 is not too late to remediate fine motor skills with OT, either, and school should provide this if there is a documented need. You likely have to start over with the school, formally request an evaluation in writing, listing everything he struggles with and all the areas you want evaluated. There are sample letters in the book From Emotions to Advocacy.

For outside school, our family has done very well with ABA therapy: it is tailored individually, so there is no difficulty working with a gifted/ASD child. They have remediated all sorts of things for our DS10, from shoe tying to social skills to losing gracefully to conversational skills to being flexible when things don't go your way to handwriting.

You may also want to ask around the parent forum at at aspergersyndrome.org -- some good, expert parents over there.

DeeDee

Thank you for the response, Dee Dee. His psychotherapist has given him a dx of PDD NOS, although it's not a formal dx, I believe that's just the diagnosis she bills under for his services and is her personal observations. The psychologist who is going to do his actual testing I believe will be the best we can get diagnostically in our area. The people two years ago were clearly not very thorough.

His outside services include OT (he has been particularly successful with Interactive Metronome for coordination) and psychotherapy. We also have a few really good resource programs and parent support for autistic spectrum issues which we already access because of our other child.

I think the greater issue we're trying to figure out is what to do in the schools. They make some small accomodations for him, it's not terrible, but I feel like there's something not right, and that there should be a way to allow him to be more engaged. We requested evaluation a couple of years ago, and it went ... weirdly. I do not want to get into specifics, but I'm still not sure if they (a) didn't understand what he needed, or (b) didn't WANT to understand. Then last year we had a terrible special education teacher, so we were too busy trying to mitigate the damage she was doing to worry about more testing. She was more involved with my other child, but coordinated the small amount of interventions ds8 gets as well. Well, if she had been doing her job she would have coordinated the services. Thankfully she is gone now. (Speaking of letter writing: that's when I started working on my own letter writing skills. I feel I'm working on an "advocating for your kid" portfolio. ) I'm just not sure what I'm advocating for here -- I want there to be machinisms in place that keep him safe (from his spaciness), moderately involved, and not lagging behind. I don't know what those machinisms should be or could be. I think the outside diagnostics might possibly help identify some things and give us documentation that there is a need. *fingers crossed*

I'm glad you mention ABA therapy. I am actually considering it for my other (more autistic) child right now. We are often swimming in copayments due to all the therapy we do, but I think it's going to soon become available for us to do ABA, and I've gotta get that ball rolling. You would definitely recommend, it sounds like?

You sound like a really proactive parent - awesome. I don't have the specifics you're requesting either. But I would suggest googling "oasis aspergers" (can't remember the specific address for them) . Oasis is a great parent resource and had sample IEPs for Aspergers/ASD and articles about working with the school. Hope the new special ed teacher /coordinater is MUCH better than last year's.

Your DS8 sounds a lot like our DD9--including the spaciness and scoring high in math (though our DD is probably not as advanced there)--unfortunately we have still not figured out a great solution. Our best luck has been in stumbling upon some really awesome teachers who have made their expectations clear, given reminders and then if necessary followed through with a consequence (that was explained/reminded about with the reminder). When applied fairly and consistently, this kind of approach works great with DD--if she gets unpredictable (to her) consequences, or arbitrary ones, or ones that have to do with the behavior of others, she wigs out and then usually (especially with that sort of teacher) gets in way more trouble. Last year was a disaster, but fortunately she is resilient. We also decided to help her work on her strengths and so are doing EPGY and IMACS on our own time and dime--she loves them.

Finally, DD was 'tentatively' diagnosed last year by the school-affiliated psychologist with ODD, ADHD, Aspergers, and dysgraphia--based from what I can tell pretty much entirely on questionnaires from the awful teacher, who went above and beyond the call of duty to get DD excluded from the school for this year. (Very frustrating, especially since the previous two years at the same school had been with absolutely wonderful teachers, but moving on....) I have read James Webb's Misdiagnosis book and think the correct diagnosis is probably PDD-NOS based on satisfying several of the ASD "A" categories but I don't think any of the Bs or others. We did try to go to a gifted/2e specialist to get a correct diagnosis going forward (for the next time DD applies to the next level of school), but there aren't any near us so it becomes difficult logistically. We're still planning to do this but will try this year to work on building up DD's social skills in the supportive classroom she is fortunately now in, and try to work at home on exercises from "Raising Your Child's Social IQ," and talk a lot about various social situations as they arise. I'm hoping for the best but it would be nice to have something less cobbled together as a plan for the future. We've only been at private schools so far, which was not the original plan but since we figured out there were various issues we thought it might work better, so we haven't had to deal with IEPs etc. yet. However, with the dysgraphia, DD writes well but it takes her a lot longer than you would expect, and she said she 'hates' writing. We tried keyboarding but I think that is also affected by the dysgraphia, or at least she hasn't been terribly enthusiastic about it, so we still haven't figured out a solution there either. One suggestion/ accommodation is if the teacher will allow her to write answers in incomplete sentences where practical, so she has less writing to do, and let her do written assignments at home (where I can do at least some of the typing if she dictates, or try to use voice recognition software although that has also been difficult because it doesn't pick up her voice very well). Just FYI, she took piano for a couple of years but ultimately stopped because she didn't like doing the fingering the way the teacher wanted her to--so I think that is a related issue for her.

Best of luck to you and your DS!

I would approach this both from home and from school; because you want the school to be directly teaching and supporting the engagement skills, but you also ideally want to be teaching those skills in outside therapy so they get picked up faster.


Schools are highly variable in their capacity to understand a kid like this. The gifted/ASD combination is already quite rare-- and the further you go toward the extremity of the gifted spectrum, the rarer it gets, for obvious statistical reasons. They are not likely to ever have encountered a kid like yours-- ever, in their whole careers-- so unless they themselves are really investing in figuring him out, they may not manage it.

Having the outside evaluation report to approach them with, for them to use as a basis for their own evaluation, should help. We have also brought our outside psychologist, ABA case supervisor, and an advocate to school meetings to help the school staff understand DS10's needs. They can talk professional-to-professional with high credibility, and develop advisory relationships that train the teachers to do the right things. I believe this has had a transformative effect in our school: certainly it has helped us get from total dysfunction (the early grades) to feeling like his needs are being met extremely well (grade 4 was amazing, grade 5 looks to be just as stellar).

I am sorry to hear about the terrible teacher- that can do a lot of damage. I'm glad you are advocating.


Absolutely. There are lots of skills that can be taught for staying "checked in" and for participating-- some can be taught outside school, but many require the support of a good special ed teacher in the classroom to prompt the right behavior until it is second nature and consistently being used in context.

You can write IEP goals that gradually target more and more classroom interaction ("will raise hand and contribute once during a class discussion, twice per day" etc.), and then teach all the constituent skills for helping him achieve this goal. There are also gadgets that help a person remember to stay on task-- look up the "motivaider." Again, all these require special ed support. It is not surprising that a person with a PDD-NOS diagnosis would need extra help in mastering these skills. I bet your son could make huge progress with the right teaching.


Based on what you've said here, I would recommend it for both of your kids. It's just a way of teaching skills and/or modifying behavior. Our ABA case supervisor has also been key in going to school, taking data on what's going on there, and troubleshooting with teachers-- which means that school and home are working together consistently, and it has evolved into a great and well-functioning partnership.

Hope that helps,
DeeDee

Some days. Some days I am overwhelmed with trying to coordinate both their care, be a good spouse, and help provide for the family. One day I feel like I just wrote the most awesome letter or came up with the best idea for helping them, the next I feel like I'm just winging it, and winging it badly. I am really upset with myself regarding ds8's handwriting. He was tested as low side of average in kindergarten and first grade for handwriting, and we did some OT work on it outside of school those years. Second grade was the year where our support was horrible, and no one said anything about his handwriting, but I should have noticed that it wasn't progressing. We could have spent the summer working on fixing his grip.


I am positive -- she doesn't have much ASD experience yet, but she is a competent person making a huge effort to learn, and that's a big improvement from before.

Dbat, I'm so sorry about your last year. Our special education teacher was terrible, but luckily all our regular ed teachers were fantastic people, and we've yet to get a bad regular ed teacher. I really dislike when people put the ODD label on Aspergers/ASD kids. I am sure in some they are comorbidities, but I know a lot of ASD kids, and 99% of the time their defiance stems from being freaked the hell out. They or you (the teacher) did something that triggered a sensory problem or a transitioning problem, or you've just broken an internal rule they've developed and they don't know how to handle that. It has nothing to do with being defiant for defiance's sake.


Totally agree. "Patient but firm and very organized" is what we always ask for in his teachers. He absolutely has to have someone who gives him consistent and fair consequences. Otherwise he'll turn into a fixture in the corner who refuses to do anything but play some sort of ninja anime-animals action adventure in his head on repeat for hours. The sweet-but-not-firm kind are the least useful with him, because they tend to let him turn totally inward. Interestingly, he actually does okay sometimes with the cranky-and-rude kind. He is completely forgiving, I can't remember a person he has ever disliked. Ever. And he doesn't take unkind actions personally. I just can't deal with that kind. I saw a guest teacher roll her eyes and make fun of my son because he teared up when he had to return a library book once, and I thought I was going to jump across the table and start a hair pulling cat fight.


We're doing keyboarding right now. I was really loathe to do it -- I didn't want to give up on handwriting, but I think keyboarding JUST for long writing assignments might be the way to go. Fortunately, our ds8 has also done piano, and is still with it and pretty decent with fingering, so we have hope about typing. I hope y'all find a better solution for you. Have you tried touch pad keyboards (like an ipad)?

Do you think you might try public schools again? I think there are some good points to public schools, particularly their legal obligations to things like IEPs.

Awesome! I love to hear success stories.


He has an OT IEP, but we can't seem to get it extended past the OT part. His goals include time on task, which when measured has had completely variable results (but never as high as 50%) and always well below the rest of the class. I just don't see how OT alone is going to help with that without more tools and intervention being reenforced in the school. [Also, we had a very, very bad OT in the school (and the best OT in the area outside of school), so he was getting ineffective OT accomodations that we're in the process of changing.] He needs something else. I think you're right about more proactive goals, like raising a hand and coming up with something relevant to say in every group discussion.


We have this for our other child, so I have hope we can get it for ds8 too, even though his issues require a little more attention to subtlety.

And thank you so much for naming the motivaider! We have had some discussion of using a system like that.