Advice on ds14 - aspergers

[Night Elf]

Jeffrey was dx with Aspergers at age 9. Some of the typical issues are lack of interest in anything social, hyperfocus on one special thing (has changed only 3 times in the past 11 years), and a very high vocabulary shown in his daily speech that sounds like an adult speaking. He maintains 1 or 2 'behaviors/tics' that will cycle in no particular pattern or length of time: verbal noises, quick pacing while flapping his arms, eye blinking, turning his body in a full circle when he turns corners, and stuttering.

 

His issues: no confidence in his ability to write but I see his main problem as his organization of an essay from start to finish. His pencil grip is horrendous so his hand hurts after a short while of writing. He prefers typing and uses the dry erase board for math when possible. Sees no reason to take notes as most of the time he just reads and remembers. He hates to work independently and prefers I sit with him during all his schoolwork.

 

His two top subjects are math and American History. He tolerates everything else.

 

Is there any reason for more testing? It was his pediatrician who suggested Aspergers when Jeffrey was 9 years old. The psych we saw asked us some questions and within the hour-long appt had gone with the diagnosis of Aspergers. I just don't know if there is anything else I should be doing. His issues are bothering me now that he's doing high school level work and especially now that I'm back in school. I keep thinking he'll never be able to succeed in a college class because he's not doing anything like what I'm doing. I have no idea how to even begin to help him because I don't know what to help him with. I'm just overwhelmed. Where do I begin at this late point?

 

Sorry, that turned out longer than I thought. :)

[melmichigan]

What specific type of testing has been done? We had extensive IQ, achievement, behavioral, and speech and language testing done over a period of weeks before my DD was diagnosed. The final report is pages and pages of results and recommendations.

 

My DD also has dysgraphia so we struggle with writing. She is learning to type and is trying to remediate cursive because it is easier on her hands, especially if she uses a slant (she was taught with HWT which doesn't slant). We are also looking into some adaptive technology for note taking as she moves to higher classes. So far she hasn't needed it, she has a wonderful memory, but I think the time may come.

Edited October 9, 2010 by melmichigan

[JennW in SoCal]

My ds, too, had extensive testing with an educational psychologist, and I had long questionnaires to fill out, questions that went all the way back to details about the pregnancy, delivery and developmental milestones. The final report was very useful in getting my son set up with disabled student services in the community college. The educational psychologist also offered tutoring and counseling sessions.

 

Some random, but hopefully helpful, thoughts.

 

Very few 14 or 15 year olds see the value in taking notes. Especially in a homeschool setting. Both my kids -- the aspie and the neuro-typical kid, finally started taking notes in outside classes. If you are going to have him take notes, let him type them on his computer.

 

My aspie kid qualifies for a note taker at the community college through disabled student services, by the way. Another important accommodation he has is the option to take tests in a quiet room with extra time. A friend's dd had never been tested until starting community college. The disabled student services office evaluated her and gave her all many services and acccommodations. Another accommodation can be to allow the computer to be used in note taking -- some profs don't allow laptops because kids tend to browse the internet in class unless there is a need for accommodation.

 

My aspie ds struggles with organizing thoughts. He despised outlining and brainstorming. We tried graphic organization tools but he resisted those, too. What finally started working was simply lots of summaries, lots of basic 5 paragraph essays (I know, I know, SWB rails against 5 paragraph essays, but aspie kids need a distinct framework) with gentle editing sessions. I read to him from the Lively Art of Writing -- I remember that helping. And I listened to many a diatribe from him about how boring, stupid and useless all this writing was. Sometimes it wasn't worth it as he would not put any effort into his writing, but somehow he improved.

 

My mom went back to school when I was a senior in high school and she was a typical older student -- far more organized and thorough. She constantly compared the kind of studying and note taking she did with what I was (not) doing, and honestly, it made me all the more resistant. I bring this up as a gentle reminder that you are helping your ds to become the best student he can be, not to be the best student that YOU are. Even if you haven't said anything out loud, comparisons can be destructive (trust me -- I've been there as a parent, too!!)

 

The dry erase board was our friend all the way through high school. :D We finally had to abandon it when we started geometry as I didn't have a compass to fit the markers.

 

I'm sure KarenAnne will chime in here today as her 14yo struggles with dysgraphia and resists most assigned writing.

[Night Elf]

We have Kaiser and the only "testing" they did to get his diagnosis was the GAD, I think that was the name of it. It was a form I filled out at home and brought in. That was it.

 

I paid $300 to an Autism center for an evaluation but it was very unhelpful and I found it to be wasted money.

 

FWIW, I don't compare my studying to his studying. I'm just looking around at the skills used by all the students in the classes. Most take notes but some just listen. There are many who don't study for a test until the night before, and projects and papers are left to the last minute. That simply won't work for him. But we have no plan in place for him learning how to organize his time because I have no idea how to approach it other than walking him through it time and time again. But basically, it's all my work and not his. He's about to start his first ever research paper and even I'm nervous about it because I haven't written a research paper since high school, and yes I'm a senior in college.

 

Back to my studying, I put in about 4 to 6 hours a day on my own studying and I most certainly don't expect the same thing from my children. I can't understand textbook writing unless I read it slowly and thoroughly and take notes while I'm reading. No other student I've met studies that way. It seems ineffective but I simply cannot understand it by just reading through it. My son is so lucky that he's able to do that! :tongue_smilie: I also prefer to tackle papers and projects as soon as they are assigned or weeks ahead if I have a syllabus because I have to work on it, put it away, come back to it, repeat. My ds prefers to do something once and so far, he's always done a brilliant job. He takes after his dad, who has an amazing ability to read/hear, process, remember, etc. I just don't think the same way they do.

 

I've thought about contacting an acquaintance who is a special needs teacher. She tested Jeffrey when he was 6 years old for IQ and aptitude, I think. She tried to talk to me about executive planning 2 years ago, but I didn't listen much because in the same conversation, she said my son would live with me forever in my basement because I didn't have him in school. But she's the only one that I know who would know about this stuff. I just thought I'd ask the board first. :)

 

Jeffrey types well though he's only just getting started on formal typing instruction due to my insistence. I just think he'd type more quickly, though he is pretty good because he's so familiar with the keyboard. He's been working on computers since he was 3 years old. He writes neatly though he erases lots because he doesn't feel his letters are as perfectly formed as he wants them to be.

 

hmm.. what else? I feel like I"m writing a book! Oh yes, we've used a dry erase board for math since he was about 7 years old. He's in geometry right now and as he's doing proofs, we need to write on paper. But he gets frustrated with writing so he dictates to me while I write. We use Keystone for his classes and every quiz/test is open book so he doesn't need to keep notes.

 

I did try to help him correct his pencil grip but he was extremely resistant. I know the feeling because I have a tight grip too and when I try to loosen it, my writing is barely legible or visible. I take notes on my laptop in class. I've only had one instructor so far who doesn't like laptops open, but the class is structured so that note taking isn't necessary.

[heart'sjoy]

General overview

http://autism.about.com/od/treatmentoptions/a/RDI.htm

Main site

http://www.rdiconnect.com/

 

The RDI Book is 20$. When I read this I knew this was what my DS needed. He hasn't been diagnosed, but the needs are there.

 

There is no age limit to begin work on Executive functioning skills/ dynamic thinking/ theory of the mind. But there is a need to make sure the foundational skills are in place. RDI has spent 10+ years researching the normal developmental growth of executive skills from infant to adult and has broken them down into over 900 objectives.

 

I don't know much about dysgraphia. It would probably be considered a co occuring condition and need it's own help. RDI wouldn't specifically address dysgraphia; it would address the planning, organizing, evaluating skills needed to survive in the adult world.

 

It was overwhelming to realize how far we have to go. But I'm glad we're starting the journey.

:grouphug:

[Dobela]

A definate diagnosis can help you with services after he turns 18. It may be that he wants or needs specialized job training, or needs help with housing, managing money, and so on. By having a diagnosis now, and documenting what you have tried, you can save yourself a lot of headache later. My parents learned this with my brother - a man with above average IQ and a diagnosis of Autism/Aspergers. When you talk to him, you think he really knows what he is talking about because he had this huge vocabulary. He drives. But he cannot hold a job, care for his own finances, or even make appropriate health and medical choices. My parents did not pursue any diagnosis or help after high school because he could work in their business and they could 'help him'. It wasn't until they looked toward retirement and began having health problems that they realized that was a bad choice. It was a huge long process to get him help because they didn't begin asking for help before he was 18 and document his issues with multiple 'professionals'. My brother was intelligent enough for college but couldn't manage if he took more than 2 or 3 classes. He also couldn't manage the upper level classes that required more precision. After his diagnosis, he was able to receive specialized job training, including sicial skills, thru a rehabilitation center.

 

If he is 14, you need to really start thinking long term. If he isn't college material, then you need to consider what options will work best for him. If you think he will need vocational training, or something else, then more evaluations may be what unlocks those doors.

[heart'sjoy]

This is a file from http://groups.yahoo.com/group/Autism-remediation-for-our-children/files/

 

I think this consultant does a good job explaining how executive functioning would develop in normal children.

 

 

I wanted to post a little bit about the difference between what most

> people consider 'social skills' and 'Dynamic IQ', because in the past

> few weeks I have had conversations where I had to clarify the

> difference as it relates to the RDI (Relationship Development

> Intervention) Program. I have heard all sorts of variations on reasons

> why a child or teen with Autism, Asperger's Syndrome, or PDD was

> considered 'too high' or 'too low' functioning for the RDI program and

> I believe it is a result of misunderstanding what the program is

> really about.

>

> I consult with families who have children diagnosed on the Autism

> Spectrum, ranging in age, abilities, ethnic backgrounds, interests and

> talents. I have heard more than a few times in the last 2 weeks that a

> 'high-functioning' (e.g. verbal) child with ASD who has 'just a little

> social skills problem' is too 'high-functioning' for the RDI program.

> The assumption is the child (who may be diagnosed with Asperger's,

> PDD, or "autistic tendencies") just needs to 'tweak' those social

> skills, and his language and academic abilities (sometimes talents)

> will be good enough for long-term quality of life. This is a dangerous

> assumption to make, as the statistics currently show (around 3% of the

> 'highest-functioning' Asperger's adults with normal language and IQ

> are reported to live independently).

>

> Part of the confusion relates to the term 'social skill' - what

> exactly does this mean? Traditionally, social skills may be taught in

> a therapeutic setting to assist a child to learn the 'rules' of

> managing social interactions. Social skills generally are unchanging,

> and are actually easier for children with ASDs to learn than true

> relating and communicating. Examples of social skills include what to

> do when...you go to a birthday party...need to purchase a movie

> ticket....you want to use a peer's toy or material...etc. Generally

> rule-based skills leave little room for spontaneity and adaptation

> when taught to a person on the autism spectrum who does not have the

> foundations of relating and communicating. The social skills often

> become a script and may or may not be used appropriately.

>

> RDI is not a social skills program, it is a program which attempts to

> teach dynamic information processing to children (and individuals of

> all ages) who have a critical deficit in this area. Dynamic IQ is

> necessary to achieve independent functioning, adapt to change, and to

> be a caring and interesting social partner to others. Dynamic IQ is

> not necessarily related to the amount of speech or academic content a

> child has. In fact, some parents new to the RDI program are seeking

> the intervention because their hyperverbal child with ASD has many

> words but no real communication, and may in fact have extreme

> difficulty with rigidity, perseveration, anxiety and/or depression

> despite language and IQ. I have worked with teens and adults on the

> autism spectrum who feel completely lost at understanding how other

> people manage friendships and life in general, because they are not

> processing information in the same way as a typically developing 2

> year old child. These same individuals are very articulate and have

> the words to express this confusion, yet on an emotional level may not

> attune to others, leaving a deficit in specific types of memory known

> to be underdeveloped in individuals on the autism spectrum. As a

> result, they may not have the stockpiles of emotion-based memories to

> use as a reference point for their future actions. This is also

> frequently referred to as Executive Functioning.

>

> In a nutshell, underdeveloped Dynamic IQ has far-reaching effects, ONE

> of which is difficulty with social interaction. But teaching social

> skills in a rule-based manner does not remediate Dynamic IQ. Dynamic

> IQ also encompasses flexible thinking, creativity and problem-solving,

> sharing with others, being curious about others' perspectives, going

> with the flow, and being able to competently manage change and

> uncertainty. Therefore, the high-functioning child with autistic

> tendencies who has lots of speech and knows his letters and numbers,

> yet must control mom's introduction of uncertainty by making her

> repeat a script is exhibiting a need to avoid dynamic interactions.

> Continuing on this developmental and relational pathway, this child

> with 'mild' ASD will likely grow into an adult who develops many

> compensations, but in effect is 'going through the motions', and

> 'feeling like he's swimming through mud', as has been described many

> times by some of my older clients. While social skills may be helpful

> for individuals of any age and diagnoses who are having difficulties

> in this area, it is not enough for individuals with ASD and is not the

> same thing as dynamic functioning.

>

> So how do babies learn Dynamic IQ? Typically developing children learn

> Dynamic abilities through the first, and most significant relationship

> they will have, with their parents. Dynamic IQ cannot be learned in

> two 30-minute sessions per week, and there is no way to work around

> the fact that the brain is experience-dependent. Babies need countless

> hours of dynamic interaction to learn to be communicators BEFORE they

> learn to say their first words. The RDI program was developed for ALL

> individuals on the autism spectrum, regardless of their ability to use

> speech or accumulate facts. A 'higher functioning' child may start at

> a higher stage in the program, but this does not necessarily mean he

> 'doesn't need' intervention which addresses development of dynamic IQ.

> The RDI program is so individualized that the child starts at his or

> her developmental level in dynamic intelligence regardless of speech

> ability, with other therapies as needed.

>

> I hope this has provided some clarification on this subject.

>

> April Choulat

RDI Certified Consultant

[Night Elf]

Thank you ladies! I've got some reading to do. :)