Kevin's Psychoeducational Assessment Results

Yesterday, Rod and I went for a meeting with the doctor who performed Kevin's psychoeducational assessment last month, and she gave us the results.

I had been worried that Kevin would perform so well in the one-on-one, zero-distraction interactions that she wouldn't be able to see what we see on a daily basis.  Yes, she also had us and Kevin's teacher complete a pile of assessment questionnaires, but would our answers match up, and would she find them valid?  For the most part, they did. And yes, she did.

It was a bit overwhelming to receive A REPORT 22 PAGES LONG, but I couldn't have asked for anything more thorough or detailed.  This included over 5 pages of extensive recommendations, mostly for the school, but also for us at home.

Because the report is so complex, I'll try to stick to summarizing the most important points.

DIAGNOSIS

1. Autism Spectrum Disorder (Without Accompanying Intellectual and Language Impairment)--Level 2: Requiring Substantial Support
2. Unspecified Anxiety Disorder
3. Unspecified Depressive Disorder
4. Specific Learning Disorder
5. Impairment in Written Expression (Spelling, Grammar, Organization) - Mild to Moderate

My Comments and Some Explanations on the Diagnosis

1. I was really surprised, but also pleased, that Kevin is now recognized as having ASD: Level 2. His old diagnosis of "Mild Autism" would likely have put him in ASD Level 1.  I'm hoping the school will take his diagnosis more seriously now that they will see the increased need for supports. Here is a table which gives a basic explanation of the ASD Levels. (click on it for a larger view)
   
2. His psychiatrist had already diagnosed him with Anxiety Disorder. "Unspecified" simply means that there are lots of different types of anxiety disorders out there, and Kevin's symptoms don't all lend themselves to one particular type. It's good to have this formal diagnosis from a second professional and on paper, though.
3. The Depressive Disorder means yes, Kevin shows signs of depression, but again, his symptoms don't lead to one particular kind of depressive disorder.  I know, you're probably thinking, "Kevin? Depressed?" but remember depression shows itself in more ways than just the sadness and suicidal thoughts most people associate with it.  Kevin displays difficulties with "emotional distress" and sometimes "feelings of helplessness, hopelessness, and worthlessness." His "socio-emotional difficulties" are "negatively impacting upon his self-esteem," and he is "self-conscious." I don't like to talk about it much, but Kevin has had outbursts during his upset or meltdown moments where's he said things like, "I wish I was dead!/I'm just going to kill myself!/I can't do anything right!/I hate my life!/There's nothing good in my life!"  Those moments break my heart.  I honestly don't think he'd ever hurt himself, but just knowing he feels that way about himself/his life is devastating.  Plus, if you click on this link, and scroll down to "How Can I Tell if My Child is Depressed?" you will see that depression can show up in kids in other ways like irritability and difficulty concentrating, too. The doctor thinks that we can do a lot to help Kevin's depression by getting him more of the supports he needs, especially in the classroom. If he feels more confident in his learning and less self-conscious, it would ease his other issues.
4. The Specific Learning Disorder is interesting.  It doesn't exactly have a name. But what we see is that he has some kind of Visual Learning disability. His Visual Spatial Index Score on the Wechsler Intelligence Scale shows him to be in "Average" range; however, as I'll discuss later, this doesn't fit in with his incredibly high scores on the other parts of that scale. The doctor noted, "He encounters difficulties with analyzing and synthesizing abstract visual stimuli (e.g., completing visual puzzles in his mind)."   Kevin's Processing Speed Index also fell into Average range (the ability to process visual information quickly under a time pressure), but again, this doesn't match up with his superior scores on other areas of the scale. Kevin frequently "required extra time to produce his responses" and "his performance suggested some difficulties with his visual memory." 
5. The Impairment in Written Expression is reflected in Kevin's scores on the Wechsler Individual Achievement Test (academic).  In all areas he was in a 4th to 8th grade level (remember, he's in grade 3), except Alphabet Writing Fluency and Sentence Composition; both of those were at a grade 2 level. Once again, Kevin "required additional time to output his responses." He also "adopted a labour-intensive approach to writing." Kevin is noted to lack "a basic foundation for the conventions of written language" and "demonstrates difficulties with his fine motor skills and the mechanics of writing."  You might be thinking, "Well, he's only a year behind." But the doctor's summary explains the problem here very well: "It will be important to perform verbal testing with Kevin or have a scribe assist him with outputting his thoughts on paper to ensure an adequate representation of his abilities. Without ongoing remedial assistance . . . the gap between Kevin's level of academic achievement and that of his peers will continue to increase over time."  In other words, his writing abilities can't keep up with, and don't reflect, his level of intelligence. And it will only get harder as the demands of schoolwork increase as he gets older.

EXECUTIVE FUNCTIONING

People with autism often have deficits in what is called Executive Functioning. Here's a good page with information about understanding executive functioning issues in children. Basically, executive function "describes a set of cognitive abilities that control and regulate other abilities and behaviours." The rating scales we completed for Kevin's assessment looked at "attention, emotional regulation, flexibility, inhibitory control, initiation, organization, planning, self-monitoring, and working memory." The results suggested "significant executive functioning difficulties" at home and 

and "minimal executive functioning difficulties" at school (although many of the ratings the teacher gave on this scale contradicted similar ratings she gave on other questionnaires, baffling the doctor; maybe the teacher was trying to focus on his best days?).

Anyway, in both home and school environments, Kevin shows "significant difficulties with Emotion Regulation, Flexibility, Inhibitory Control, and Initiation."

To summarize, "Kevin's scores suggest that he may have difficulty handling his emotions and recognizing the consequences of his reactions, especially during highly stressful situations ..."  Well, we knew that!

The results also show that "Kevin may have difficulties beginning, starting, or 'getting going' on tasks, activities, and problem-solving approaches appropriately." However, in the doctors' closing notes, she made an interesting point that I hope Kevin's future teachers will take into serious consideration:  "It is important to realize that deficits in executive functioning can often appear to reflect non-compliance or disinterest in a task or activity on the part of the student, but that for Kevin, this likely is not the case." It's a new perspective for me, as well. I know Kevin's behaviour always has a cause, and I try to keep that in mind, but I wasn't aware how much executive functioning deficits can impact daily life. However, there are skills which we can teach Kevin to help him compensate for his executive functioning difficulties. The doctor put some ideas in her recommendations.

STRENGTHS

It's time to focus on Kevin's assets.

But can I say just one thing here? This kid is complicated. To quote the report: "Kevin's Full Scale IQ  . . . cannot be meaningfully interpreted as there was too much variability among his index scores. A better representation of Kevin's overall intellectual ability [includes focusing on the individual] estimates of his abilities in . . . five areas." In three of the five areas, he is in Superior/Very Superior range.

To sum it up: My child qualifies as both gifted and having a learning disability.

But back to the STRENGTHS:

• Kevin has a Verbal Comprehension Index Score in the 99th percentile--Very Superior range.     "[H]e has superior abilities when using words to express his ideas and to solve problems," and "is able to successfully reason about information that is both simple and complex."
• Kevin has a Fluid Reasoning Index Score in the 95th Percentile--Superior Range. "He has superior abilities when comprehending tasks that involve patterning and whole-part relationships and understanding the concept of equality among visual objects. He is able to effectively use his quantitative reasoning skills and follow a logical pattern through to another conclusion."
• Kevin has a Working Memory Index Score in the 98th percentile--lower end of the Very Superior Range. "He has superior ability when he is required to memorize new information and hold information in short-term memory and when he is required to concentrate and manipulate that information to produce some results."

Academic Achievement: [keep in mind he is currently in Grade 3]

• Word Reading: Grade 7-8
• Pseudoword Decoding: Grade 6
• Reading Comprehension: Grade 5-6
• Spelling: Grade 4-5
• Numerical operations: Grade 4-5 

As a lead-in to the discussion of the doctor's recommendations, I thought I'd share this paragraph she wrote under Kevin's Academic Achievement results section.  It is extremely important to be aware that he can only access his strengths when the proper accommodations are in place:  

"It is important to note that Kevin often required constant repetition and redirection during the academic portion of the assessment session. He encountered difficulties with working quickly during independent work. Without one-on-one support and redirection, his scores would have been significantly reduced. [emphasis mine] This has significant implications in terms of the amount of information he will retain in the classroom setting."

RECOMMENDATIONS

As I said at the start, there were over 5 pages of detailed recommendations for both school and home. To keep it brief, I'll only highlight the ones that really stood out to me:

• It is essential that he have the following assistive technology: personal laptop computer, printer, scanner, and associated software (voice-to-text, text-to-voice, Word Cue, Smartideas, etc.)*
• consultation from an Occupational Therapist; assess Kevin's difficulties with fine motor skills and provide him with appropriate treatment*
• continued assistance from a Speech and Language Pathologist for articulation and fluency*
• extra time to complete written tasks and copies of information that is written on the blackboard*
• It is important to check for comprehension when providing Kevin with instructions to complete a task, especially if that task is more abstract/less structured (i.e. have him paraphrase instructions and information in his own words before beginning the task).
• For executive functioning, teach Kevin problem-solving processes in which he learns to describe problems, set a goal, establish ways to reach the goal, and evaluate the outcome.
• He would benefit from having pictures paired with words whenever possible.*
• Kevin should have a multi-sensory learning experience
• recognition of Kevin's strengths, interests, and accomplishments will be critical to his ongoing motivation; his efforts should be liberally recognized and reinforced
• he would benefit from individual therapeutic interventions to assist with self-regulation, emotional control, social skills training, and provide him with coping skills
• Kevin's difficulty regulating his behaviours and emotions should be addressed through development of a specific behaviour plan* 
• Do not expect Kevin to acknowledge he is sad, frustrated, or upset.  In the same way he has difficulty perceiving others' feelings, he struggles to identify his own feelings.  Visual aids (like a faces chart) would help him identify his feelings and advocate for help.
• would benefit from accommodation often provided for children with anxiety: preferential seating, frequent cueing, increased time to complete asks, incentive programs, removing pages from workbooks, textbooks, etc. to present one at a time to prevent him becoming overwhelmed
• Kevin worked well with one-on-one support and was noted to persevere with encouragement and positive feedback.  In other words, he needs an Educational Assistant (EA) nearby at all times.* He needs constant repetition of instructions and redirection to stay focused on the task at hand.
• We should request an IPRC (Identification, Placement, and Review Committee) meeting for Kevin.  It would make his identification formal and any accommodations requested legal and binding. However, we would likely have to fight for that as the Catholic school board no longer does IPRCs.
• Similarly, we must insist on a formal IEP (Individual Education Plan) for Kevin.* He requires many accommodations to be successful in school and should be provided with as much assistance as possible from the Learning Support Teacher. 

*These are things that are not currently in place for Kevin, and that the school is obligated to provide, given his diagnosis and needs.

At the meeting with the school that I requested last month, I emphasized the need for a behaviour plan and an IEP.  They were going to formulate a behaviour plan, but were hesitating on the IEP.

I am hoping that, when presented with this new document, they will read it THOROUGHLY and take it SERIOUSLY, and begin implementing all these recommendations. Now that we have a new, current, and very thorough assessment in front of us, I see no excuse for them to deny/minimize Kevin's needs any longer.  

I feel it's time to go into battle. No more timid, nice-nice mama. I can see now, very clearly, how Kevin's deficits are holding him back and making his time in the classroom very difficult for him. My child is GIFTED. We need to ensure that he is able to harness those gifts and reach his full potential. We need to make his classroom experience as positive as possible. In doing so, we can increase his comfort level, decrease his negative self-image, and let him shine! <3

Ryan's Assessment Results

I finally received Ryan's results from his "post-treatment" neuropsychological assessment for the time he spent at Summit Centre. (The assessment was at the end of November!) I've been really anxious to see, in official numbers, what progress he was able to make over the 2 and a half years we worked with them doing intensive ABA therapy, between the Unity program and the STEPS program.

During the assessment, the testing person asked me a question which made me pause and reflect, and I was hesitant to answer, at first: What age do you think Ryan is at, cognitively and developmentally? Considering he's your third child, in comparison, at what age would you place his skills?

I wasn't sure how to answer that. Wasn't that why I was here? To get a professional's opinion on this?

I replied, tentatively: "A year to eighteen months?"
It turns out, I was pretty much spot on.

The Big Numbers

I'm going to get into some detail here, as much to organize my own thoughts as anything else.

MSEL Early Learning Composite Score, 2013: represents a developmental level of 7 months old
MSEL Early Learning Composite Score, 2015: represents a developmental level of 12 months old

Adaptive Behaviour Competence Score (VABS-II), 2013: places his overall level of functioning in the low range; equivalent of 8 months old
Adaptive Behaviour Competence Score (VABS-II), 2015: places his overall level of functioning in the low, moderately deficient range; equivalent of 13 months old

According to both of the major assessment procedures, Ryan gained about 5 months of development over 2.5 years of intensive ABA therapy.

More Detailed Numbers/Comparisons (in age equivalents)

MSEL

Visual Reception: 2013--7 months; 2015--11 months gained 4 months
Fine Motor: 2013--8 months; 2015--16 months gained 8 months
Receptive Language: 2013--9 months; 2015--14 months gained 5 months
Expressive Language: 2013--7 months; 2015--8 months gained 1 month

VABS-II

Receptive Language: 2013--9 months; 2015--6 months LOST 3 months
Expressive Language: 2013--5 months; 2015--8 months gained 3 months
Written Language: 2013--22 months; 2015--no change
Personal Skills: 2013--6 months; 2015--20 months gained 1 year 2 months
Domestic Skills: 2013--7 months; 2015--10 months gained 3 months
Community Skills: 2013--<1 month; 2015--no change
Interpersonal Relationships: 2013--6 months; 2015--no change
Play and Leisure Time: 2013--8 months; 2015--no change
Coping Skills: 2013--10 months; 2015--2015--7 months LOST 3 months
Gross Motor Skills: 2013--18 months; 2015--28 months gained 10 months
Fine Motor Skills: 2013--11 months; 2015--18 months gained 7 months


My Thoughts

Although I'm not surprised by the results, I'll admit I was hoping to see more gains.  I also do not agree there has been no change in the Play and Leisure Time and Interpersonal Relationships categories. I feel like I've seen improvement there. I also don't see how he's lost skills on the VABS-II Receptive Language and Coping Skills categories.  Maybe there's more of a disparity between what's expected at his chronological age now, since he was only 3 at the time of the first assessment and almost 6 at his most recent one?

This brings me to another point. While I'm happy to see so many areas with at least some gains, you've got to keep in mind that he was only 3 years 2 months old at the first assessment and was 5 years, 9 months old at the second assessment.

In 2013, he was 2 years, 5 months developmentally behind for his chronological age.

Now (2015), he is 4 years, 9 months developmentally behind for his chronological age.

The developmental gap has not diminished. It has basically doubled.

I had hoped these results would give me a clue as to where to go from here in terms of Ryan's therapies.  It turns out I'm more confused than ever.  Did he make gains doing ABA? Yes. Did he learn some new skills? Yes. Is it worth continuing to pursue intensive therapy privately? That I don't know.

The doctor's summary of "Implications" at the end of the latest assessment report has changed very little from the one in 2013. The main points haven't changed, and the wording is essentially the same:

• "Ryan will learn best in a highly-structured environment . . . consistent expectations . . . clearly defined rules . . . modification and accommodation . . . . Verbal directions should be clear and concise . . . visual aids and extra cueing . . . The use of nonverbal (pictorial, gestural) cues . . . tasks should be concrete and involve an active hands-on learning . . . provided with ongoing corrective feedback regarding his performance . . ."
• "Focusing on basic compliance tasks (e.g., working at a table, transitions, waiting, taking direction from a non-familiar adult) is imperative and will eventually facilitate his ability to participate in any future placements he attends outside the home (e.g., daycare, recreation program, school)."
• "It is important that Ryan receive support in developing his receptive and expressive communication skills, social skills and daily living skills."

Well, yeah, we have been doing all that since 2013, and we continue to do that at home and school. But again, the question is, should we be doing this as intensive therapy sessions guided by ABA professionals, or should we simply use the tools we've already learned to apply in incidental learning at home and school?  Is the incidental learning enough?  Would he make more progress back in a setting of intensive, one-on-one therapy with professionals? 

I don't know.  It took us 2 and a half years to gain 5 months, and we're still almost 5 years behind.  

What I do know is that I will never give up on him.  I will never stop trying to teach him the skills he needs to interact appropriately with others and take care of his daily living needs. It's more of a question of how hard we're going to push, what approach we're going to take, and what is best for Ryan emotionally and physically.

I stepped out of the room mid-blog, and came back to find Ryan inspecting my work. ;)

Ryan: Where do we go from here?

Okay, so much on my mind lately and I just need to vent. I'm not really asking for advice here; I'm just sharing my thoughts.

So, Ryan.

Where do we go from here?

I'm still waiting on his discharge assessment results from Dr. Saunders after leaving Summit Centre. Yeah. That was in November, and I call every few weeks to see if they have them yet.

I will admit, I have dropped actively doing his ABA programs since he started school full time. There's a few reasons: 1) to give him to adjust to full time in the classroom 2) because I really wasn't seeing major progress with his ABA programs 3) because he seems tired after school, and I don't want to burn him out with full time school plus ABA programs.

I've been questioning myself constantly about what the next step should be.

Two things in my mind stand out as important general goals: 1) self-help/daily living skills and 2) establishing a functional mode of communication.

The question is, What's the best way to go about this?

I know Summit Centre would say get back into ABA immediately. There WAS progress. But it was tiny. And incredibly slow. They'd say use PECS. But we never got past Phase 3. And it only worked in discrete trial ABA sessions; it never carried over to the natural/incidental environment with Ryan.

At school, they've been trying the core board for communication. The only picture Ryan will tap is "more."  It hasn't carried over to anything else, and he already has a sign for "more." That seems redundant to me. I think it does to Ryan, too, because he would get mad and sign more repeatedly while ignoring the core board with me.

I keep reading/seeing more and more stories about nonverbal kids and adults with autism who have learned to communicate. When they express their thoughts and feelings, I get so anxious for Ryan. These people are highly intelligent, but before they could communicate, you would never know it. I wonder, What is Ryan thinking? Does he understand everything I say? Does he feel trapped in there and long to share his thoughts with the world? Is he learning from his environment?  Is he picking up on classroom lessons, like letter and number recognition? Is he learning things from watching educational kids' shows?

WE JUST DON'T KNOW!

So far, we have no real measure of Ryan's cognitive capabilities. There have been no eye-opening breakthroughs, and all assessments to this point have suggested significant cognitive delay, but that's because he can't respond, so HOW DO WE REALLY KNOW?!

That's also why I don't know where to go from here. I don't want to waste years and resources and put stress on Ryan and ourselves for therapies that are doing little to nothing. But I don't want to settle into acceptance of things as they are when there might be potential for a major breakthrough with him ... If we could just find the key.

I am so confused. I am so frustrated. I feel like I'm groping around in the dark in an unfamiliar place trying to find that light switch.

Should we go back to what we know (ABA)? Should I start trying harder with the core board? Should I switch it up and start investigating things like Pivotal Response Training or Rapid Prompt Method?

I don't know. I just don't know. I feel overwhelmed.