Feeling confused, impatient, and in need of encouragement.

[Spring Flower]

Please don't quote these scores because I will be removing them later. 

 

I recently gave DD7 the ADAM and DORA tests as an end of year assessment. Just out of curiosity, and hoping to find a baseline, I decided to do the same tests with DS5. These tests are done online at home at I sat with DS as he did the tests. We started with the reading test (DORA) and it seemed like things were going well enough. When we got to the reading comprehension, I was beyond shocked by his performance. I know the comprehension is a weak point for him but I didn't expect this. I can't remember the exact questions now but I'll try to sum them up.

 

The reading passage was a short paragraph about the sun. Two sentences into the paragraph, DS decided he was "tired of reading" and clicked over to the comprehension questions. At first I was a little disappointed at the first question. (Not an exact quote) "What does the sun do for the earth?" A- It keeps the earth warm, B- It helps animals grow, C and D - some other ridiculously obvious wrong answers. The questions and answers are read out loud by the computer and then DS read them again to himself. His response, "No, the sun doesn't warm the earth. Yes, the sun helps animals grow." He clicked on B. He had read that portion of the paragraph, but even if he hadn't, it seemed obvious to me what the answer would be. There were 5 other questions that were equally hard for him. "What does the sun do when it shines on the water in a lake?" A- It warms the water, B- It boils the water, C and D other obvious wrong answers. "Yes, the sun boils water," and he clicked on B! 

 

A little background, DS is on a waiting list for an ASD evaluation. He is very bright and his passion is numbers and patterns. We haven't done any formal schooling yet and honestly I am dreading it. He cannot focus for more than 3 seconds on something that doesn't stimulate his brain.

 

I feel like these scores are something I should mention to our evaluator. We are specifically doing ASD testing, but will the evaluations help explain his thinking on this reading test? I don't necessarily think he has a LD, but I want to make sure that we cover all of our bases when we do the evaluation. I'm not really sure what they will be evaluating or what exact tests they will be doing. All they told me is that when we finally make it off the waiting list and schedule an appointment, the appointment will last 4-6 hours. I just don't want to miss anything.

 

I guess my overall question is, what do I need to bring with me (stories, questions, test scores, etc) to help the evaluators make an educated decision about a diagnosis? I'm feeling a little in the dark and impatient as we sit on the waiting list. It is so hard for me to have a child that I just don't understand.  :( Any encouragement and advice will be accepted. 

[Lecka]

My son has had a 4-hour evaluation for ASD.  

 

We didn't have a similar situation, my son was turning 4 (3 years 11 months) and he does not sound very similar.  

 

But -- our evaluation, though it is kind of a blur, included a long parent interview for me, and time with my son playing with an evaluator.  They just wanted to see how he did with toys you might see in any pre-school or daycare or home.  They played with a balloon with him (blowing it up and then letting it go, so it would fly around the room) and seeing how much he would engage with them.  We had a medical overview that was uneventful as he is physically healthy.  

 

I think you could mention the scores in the interview.  It is possible they would do their own testing, though.  B/c my son was younger, they tried a developmentally-appropriate test for him, but I think it is very possible they would do a test with an older child that would be appropriate to his level (I don't know, though).  They told me they pick a different set of tests for different kids, that they think are appropriate.

 

I had already had a phone interview/questionnaire before I went to our meeting, and I had already filled out a questionnaire.  Then I felt like the parent interview got into a lot of details, I felt like it went well as far as giving them an accurate idea and letting me feel like conclusions they reached would be accurate.  

 

My son is 5 1/2 now and at a lower level in a lot of ways.  

 

For the comprehension questions -- it is a common weakness for ASD to have problems with comprehension.  I do not know much about it, just, it is not something that seems really unusual.  

 

For the "not wanting to focus on things he doesn't find interesting" -- this is also something that can go along with ASD.  For my son we are doing ABA and part of this means -- when it is possible to follow his interests and let him have naturally rewarding experiences, we do.  When we need him to learn something that does not have intrinsic motivation for him, we move to extrinsic motivation.  This means -- he has a token board, he earns tokens, he gets to "work" for something like a few minutes of a movie, or time to play with a toy, or an activity he likes (jumping on the bed, getting buried in pillows, playing chase, etc.).  It works out well for him.  I don't know if they will recommend that or not for your son, but he will work on things that are hard for him this way.  There are also a lot of ways to make activities more fun for him or more interesting, by working in something he does like or using a method he likes more.  Our insurance pays for him to have ABA therapy and his therapist has a lot of ways to help him be interested.  But the token board and earning a reward are a big part of it, too.  Whatever they say -- this is something that they may be able to give recommendations about, it is a kind of thing you can ask them about.  

 

The evaluators we saw, it was a group of 4 or 5, were very nice to me and my son and my mom (who went with me, my husband was deployed).  I was very impressed with them and with the evaluation.  

 

We really just got an official diagnosis that helps us with the school system and that we need for our insurance.  We got a recommendation for him to do ABA therapy.  We got some contact numbers.  

 

My son did not cooperate very well with some of the testing so we did not get test results in some areas.  On another one they used a test for kids younger than him, so he could not get a standardized score.  

 

In his case, through our insurance, the ABA therapist then did a long evaluation that targeted things for him to work on in a lot of areas.  So we got more specific information from that, in our case.  But if he had cooperated with more of the testing and if he had been at a higher level, I think we would have gotten more information that way.  I bet you guys will.  

 

I wish you the best :)  I hope you can get in soon :)  We ended up going in 4 months early after they had a cancellation on Halloween, and we took the slot.  

 

In our case we needed the diagnosis to get the ball rolling with our insurance, so he could start ABA.  I really knew for a little while before I even got the referral from the pediatrician.  But -- he was on the obvious side.  When the pediatrician very easily gave the referral, that felt like a confirmation to me.  

 

My son is a good responder to ABA therapy and I am pleased with how it is going.  He is just starting more social skills kinds of things, learning to initiate to peers and things like that.  He is playing better.  His language skills are vastly improved, his imitation skills are vastly improved, etc.  His behavior is like night and day.  There is still a lot to work on, too, but I try to celebrate improvement anyway.  

 

[Spring Flower]

Thank you Lecka for your thoughtful response. It helps me to hear about the experiences other people have had. We have been on the waiting list for 3 months now and we are on their call list for cancelations. Hopefully we'll get in soon.

[PeterPan]

It sounds like he just wasn't into it.  He wasn't attending/paying attention.  

 

The psych will have his/her own tests.  You'll be able to mention your concerns in the intake meeting.

 

What you might do is read about adhd a bit and start using some techniques appropriate to it.  It can occur along with the spectrum or is sometimes assumed into the spectrum label.

 

Also consider changing your role from teacher to facilitator.  He's clearly very bright and advanced, so he may have opinions on what he'd like to study and do better when he's pursuing things he's interested in.  It's OK to do that.  You DO NOT have to follow a standard paradigm on anything.  As long as he lights up, you're FINE.  Go farther out of the box and let him lead you.

 

[Lecka]

I think there may be times or areas where there is a legitimate goal, that you have for him, that he does not care a lot about, that it is good to push him.  

 

But I agree ----- as much as possible, do let him do what he is interested in, and find a way to incorporate his interests into as many areas as possible.

 

You definitely don't have to follow any standard curriculum of "things he is supposed to be interested in" or "things a lot of other kids his age like and that is why there are curriculums designed around them."  Why shouldn't he have things to his own interest, the same as other kids do?  

 

But there are times people do need to learn some things that are not that interesting, just to get by in the world, sometimes it does happen.  But there are a lot of ways to get from Point A to Point B, too.  

[kbutton]

I agree with what Lecka and OhElizabeth have said, so I don't have a lot to add on that score--you will have specific information to follow up on after the evaluation, and if you aren't dealing with ASD, then hopefully, you will be pointed in a direction to receive the information you do need.

 

:grouphug: As you wait for the evaluation, you are going to experience times of total frustration, anxiousness about the process and about your child, and you will second guess lots of things. It's all part of the process. Keep track of the things that you are concerned about (maybe a dated list with descriptions--include context). When you get closer to the evaluation, rank the things that concern you most, note patterns, etc. It will help you when you go through the parent interview and fill out forms. Bright kids are sometimes chameleons, and they can make this whole process a bit more challenging, particularly if they are intrinsically motivated and the key to their motivation is hard to pin down. Those kids just won't go into the box for any ol' reason, including making mom feel better!

 

[Storygirl]

So your son is 5? It sounds like you have enough concerns about other things that you want him to be evaluated, but I don't think I'd be concerned at all with these test scores.  I don't see anything that is out of accordance with his age, except that he seems advanced in many areas. If he didn't read the material, I wouldn't expect him to score very well on the reading comprehension questions. I get that he seemed to get some questions wrong when the answer seems obvious, but that's not really unexpected for his age, either, especially when he has had no formal lessons. I'm kind of impressed that he is reading at age five without having had any lessons yet.

 

I'm sure you will get a lot of good information after his evaluation that will help you determine his needs.

[Lecka]

I thought of some more things that are things that I get asked about my son.  But -- it may not be the same kinds of things at all as with your son.  

 

Are there things he does with you, but not with other people?  Are there things he does at home, but not out?  Are there things he does with siblings, but not "same-aged peers"?  For my son there are times when I consider him to be able to do something, and then it turns out, he does not do it in other settings or with other people.  So then is has not generalized, and there is a need to work on generalization.  

 

They might ask about social skills, what he does if you go to a park with unfamiliar children, if you go with familiar children, etc.  Will he respond to other children?  Will he join in play with other children?  

 

Those are things I get asked about now.  

 

They might also ask about how he plays with toys.  You might watch him play with toys a little, b/c they might ask about that.  

 

I think that the test about reading, and the more academic stuff, will only be one part.  There may be a lot about social skills and things more like that.  Maybe what his conversational skills are like, if he can talk back and forth with another person -- how long back and forth, can he ask questions about what someone is talking about in a conversational way.... 

 

Does he have a hard time with transitions.  

 

If none of this sounds like your son -- then don't worry, it is just things I know come up with my son, but kids are so different.  Just *do* think outside the box of academics, and think about social skills and language, too.  

 

http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

 

This is a copy of the current diagnosis...  

 

My son is really not 100% on that list, there are items where I don't think he is like that much at all.  But where it says "two examples" and then "this list is not exhaustive" ---- when I was at the appointment, they did talk about what things matched the diagnosis.  Some things -- are not just like what is written on the diagnosis.  

 

But if you see anything there that seems like things you see, those are kinds of things to keep an eye on so that you can be ready to answer questions.  There might be more general "how does he do in different situations" questions that you can pay attention to in case they ask.  

 

I think, too, if he is mainly around siblings, or a group of kids he has always known well, maybe take him to a few places where there are other kids, so you can be prepared for them to ask.  But ---- I also think, it may not be necessary ----- maybe you can call back your contact number and ask for more information?   

 

If he goes to anything without you, Sunday School or any lesson or activity, then you might ask the teacher how he does.  

 

But -- my kids were not in outside activities at the time I took him, and it was NO PROBLEM.  My son had just started special needs pre-school and I really didn't have any of that information.  I had kept him home for the previous year, though, I thought he needed a year at home before pre-school.  It was like -- it would have been nice if I had it, but no problem.  But we did go to church, and in our case, someone at church mentioned to me "he never does such-and-such" but it was something that *I* knew he could do at home, so I didn't think much of it.  But that is something where - for him it does go along with autism.  (I remember some of these questions feeling like -- I would have liked to have been able to answer -- but it was no problem that I did not know b/c I had kept him home.  The people thought it was fine I had kept him home, they were not judgmental at all.)    

 

But for some of this -- there is a difference between "doesn't want to" and "can't."  My son is one where, there are things in the social areas, that he would like to do but he doesn't know how.  He would like to play with kids, and he has learned some skills, and now he is playing more and he likes it.  He is starting to learn to initiate play.  It is hard for him to learn -- but it is also clear he likes it, and that makes it a goal that is easy to think is a good and worthwhile goal.

 

But for some things, if it is just not his thing, there is not a reason it has to be his thing.  

 

My son has more things in A (social communication and social interaction) so I think I might be mentioning more things from there.  

 

In the B section it is like -- he qualifies, but I don't see as much of him there.  He does like to pace, he does have sensory needs.  He does have difficulty with transitions, which is in that section.  That is about it.  

 

I also agree, it is really good he is doing so well in reading :) 

[Spring Flower]

So your son is 5? It sounds like you have enough concerns about other things that you want him to be evaluated, but I don't think I'd be concerned at all with these test scores.  

 

I agree, I am not worried about his reading comprehension or his test scores. I am mostly worried about his behaviors and I think I am feeling overanxious about getting the evaluation done. Thank you for your perspective.

[Spring Flower]

Thank you everyone for your responses!

[Spring Flower]

 

 

http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

 

 

 

Thank you for this link. It confirms my desire to have my son tested. I can't believe I have waited this long! I've been in denial for so long thinking this is just a phase or he is just a "quirky" kid. 

[Lecka]

I had that feeling of "why did I wait," especially waiting for the appointment.  

 

We had some really good times during the year I kept him home, though.  He just did not grow out of some things I thought he would grow out of.  

 

You are moving ahead now, and I bet you have been doing good things with him already.   Don't feel bad, it is okay!  Parenting is more important than therapy.  But I am also hopeful you will get some good information and help with his behaviors.  

 

I don't know what his behaviors are like, but there is a lot written about it for autism.  My son does the kind where there are "functions of behavior" and you respond to the "function" of the behavior and not the behavior itself.  So a behavior might be attention-seeking, or it might be an attempt to escape (to get out of doing something).  Then you look and see if there is a skill you need to teach them, or if there is a way to change the environment, or if there is a way to prevent it.  If they are trying to escape -- maybe there is really a problem going on and they don't know the right way to let you know, and you need to investigate that, and help them fix it, and teach them the right way to tell you there is a problem.  Then there may be a way to respond to it.

 

Your son might be old enough and have high enough language skills to have a lot more options, too.  

 

My son has had major improvement in his behavior, though.  A lot of it is from understanding why it is happening, teaching him a replacement skill that is an acceptable way to meet the same need, and changing how I respond.  When he started we had home visits from a BCBA and with her advice his behavior was noticeably better in two weeks and a lot better in a month.  I think we are lucky this way, I know not everyone has as good of results, but still, I can share it was very helpful here.  (I can also share that his behavior was very hard/stressful to deal with and we were overjoyed with any improvement, so that is some context.)    

 

http://www.amazon.com/Functional-Behavior-Assessment-People-Autism/dp/1890627585/ref=cm_cr_pr_product_top

 

I have not read this book, but I have read other books in this series, and I have liked them.  I glanced at the "look inside" and there are some vignettes, you could see if any of them look like something familiar, to see if you are interested in it.  The main book I have liked is called The Verbal Behavior Approach, I think it has a good section on behavior, but it is only about 10 pages and the rest of the book is mostly about teaching language skills.  It is a great book for my son but it is for children who do not have conversational language skills, in general.  It is the kind of therapy my son does, but a lot of it would probably not be pertinent.  If you could get it from the library, I think it has a great explanation of functions of behavior, though.  But it is not worth buying for 10 pages.  

 

There is also something called PBIS positive behavior intervention and supports.  It is supposed to help prevent behaviors.  I don't know as much about it, but they do it at my son's school and it seems good.  

 

It is not like everything is perfect -- but it is so much better.

 

But there are different things for different kids, this might not be the approach they recommend for your son.