NeuroPsych Evalutation Report

We received the evaluation report from Dr. Seibert regarding John's evaluation from Feb-April.
At the time of this test, John is considered 3 years, 2 months old.
Listed below are some of the highlights from the 12 page report:

Areas of concern defined by parents:
1.He needs to be taught certain things that other kids seem to pick up naturally
2. Demonstrates some echolalia (repeats the ends of some questions when asked)
3. Preoccupations with narrow areas of interest and focus (in phases)
examples: clocks, lining up cars, left-turn arrows, train tracks,& reading clothing tags
4. Frustration tantrums -- problems managing anger
5. Craves sensory stimuli (specifically with hands/touch, chew non-food items)
6. Trouble with eating (messy eater, prefers to use hands, overstuffs mouth)

Areas of concern Socially:
1. Limited eye contact
2. Unable to show comfort to others in distress
3. Some pretend play
4. mostly parallel play

Areas of Concern defined by Current Teachers:
1. Little Attention Span
2. Easily Destracted
3. Limited Spontaneous Speech
4. Limited to no interaction with other children
5. Loves sensory activities (finger painting, eating with hands, feet in sand)
6. Limited interest in classroom when given free time (lines up cars or 'reads' a book)
7. Delayed academically
8. No eye contact

Things the teachers did not notice:
1. No strange or odd preoccupations
2. No behavior problems
3. No transition tantrums

Observation In the Clinic over 2 observation days:
1. No tantrums or upsets
2. mild mannered
3. Reduced eye contact
4.quiet most of the time, with only one-word utterances
5. Poor intelligibility of speech
6. Fairly distractible, but was able to maintain focus if sitting on lap, bounced, or squeezed

Observation at School:
1. John did not remain on carpet square during storytime and had to sit on teacher's lap to maintain focus
2. Wandered room
3. Responded to yes/no questions
4. Kids lined up to wash hands, John consistently wandered out of line; needed re-direction
5. Food placed in front of him, told to wait, kept putting hands in spaghetti; needed to be reminded to wait multiple times
6. Facial expression blunted most of the time
7. Complied with verbal instruction but never made eye contact; appeared not to be paying attention, but would respond appropriately
8. Messiest eater in the class
9. After lunch, wandered over to line up cars
10. Wandered to book area, opened book, sat down, and "read" it
11. On playground, rode tricycle alone most of the time
12. Smiled at girl who climbed on "caboose" of tricycle
13. Stopped bike purposely to have 2 other girls crash into him; all giggled; John repeated again
14. Gravitated to outskirts of playground most of time
15. Seemed to be "in his own world"

ADOS test (Austim Diagnostic observation Schedule):
1. John responded to name by turning toward examiner
2. Poor eye contact; used eye contact to get the examiner to do something again
3. Showed some shared enjoyment with examiner, but not consistent; interested mostly in having sole control over a toy; needed to be re-engaged to play with examiner
4. Did not spontaneously give objects to examiner; but would comply after repeated requests
5. Could show functional use of toys when prompted but did not demonstrate any symbolic play on own
6. Did not initiate any social interactions, but did not mind the examiner playing alongside him
7. Produced single word utterances, most not intelligible
8. Showed only occasional, unusaual sensory behavior -- objects in mouth
9. According to ADOS, fell within the spectrum, but not autism, per se

GARS test completed by parents scored an 81 -- meaning "possibly" has autism

Other Tests Administered:

• DAS-II - Differential Ability Scales - Verbal & Non-Verbal Cognitive Development; John scored in the 66th percentile for Verbal Comprehension (average) and 58th percentile for Naming Vocabulary (also average); For the Non_verbal section, he scored in the average for Picture Similarities, but scored mildly impaired on Pattern Contruction; His total scores for this test was a 96, and fell within the average range (39th percentile)
• Although the examiner felt that the scores need to take in account that John had a very low attention span, needed frequent re-direction to the tasks at hand, cues to remind him to persist in his effort, prompting to consider the full range of answer chocies before responding, etc.
• PLS-4 - PreSchool Language Scale - measures comprehension and expressive language skills; John's auditory comprehension scored of that of a 2-year 11 month old child (average range for his age) Most advanced skills he showed was the ability to distinguish activities that were day from activities at night. He could understand picture analogies, identified objects, identified colors and common activities, understood quantitive concepts (one vs. all), and descriptive concepts (big vs. small) Could follow 2 step commands, but COULD NOT show spatial concepts (on, off, in, out of), pronouns (I, me, you) or negatives (show me the baby that is not crying) His scores resulted in that of a 2-year 8 month old, which is on the low average for his age range.
• VABS-II - Vineland Adaptive Behavior Scale - questionnaire filled out by parents; day-to-day functioning;
  
• Communication scored low at 1 year 11 months;
  
• Expressive Language scored at 2 years, 10 months;
  
• Written Language was HIGH at 4 years, 3 months - able to recognize upper and lowercase alphabet, own written name in printed form;
  
• Daily Living Skills ---
  
• Personal Care-2 years 9 months,
  
• Domestic Care - 2 years, 2 months;
  
• Community Functioining HIGH at 4 years 5 months
  
• SOCIAL skills - low at 1 year, 7 months;
  
• Play behaviors -1 year, 10 months
• Coping - 2 years, 7 months
• Fine Motor - 3 years, 5 months

DIAGNOSTIC IMPRESSIONS:

• Basic Language skills have caught up to low average-average range, he still shows delays in speech intelligibility, as well as in pragmatic use of language in social/communicative ways
• Delays in age-appropriate social and play behaviors
• Shows some atypical restricted and repetitive behaviors
• Falls short of Autism Diagnosis at this time
• However, meets criteria for PDD-NOS, Pervasive Developmental Delay, Not Otherwise Specified, otherwise known as "atypical autism"
• He has shown signs that intervention boosts his progress

RECOMMENDATIONS:
1. Parents should request an IEP (Individulaized Educational Plan) from Bonita Unified School District based on this second opinion requesting:

• Placement in a classroom with a better teacher-to-student ratio than a typical educational classroom; Should have curriculum appropriate for average-range overall intellectual level, but with resources that meets his needs for supervision, assistance, difficulties for sustained attention, and facilitation for social activities OR in a regular classroom with a one-on-one aide
• John clearly needs speech therapy to address intelligibility and language pragmatics
• John should receive an OT evaluation to address sensory issues and motor skills concerns

2. Parents should re-apply through regional center for services that may benefit them in the community based programs
3. Parents should seek additional play and social opportunities and instruction for John with peers close in age; John needs facilitation to initiate and sustain engagement with other children and verbal cues to help him play
4. Seek parent education and support services

Official Diagnosis: PDD-NOS

I haven't received the official report from Dr. Siebert yet, but after testing, John has received an official diagnosis of PDD-NOS (pervasive developmental delay, not otherwise specified). She suggests that he attend a communications delayed preschool. Once I get the full report, I will update the blog with her findings.

2 articles on CNN

CNN had 2 stories on Autism today.

Find them here and here.

The first one is a case of PDD-NOS, which is what I believe is going to be John's diagnosis.

Neurofeedback Testimonial

I recently submitted this testimonial to Neurofeedback Centers for Success.

My husband and I brought our 2-year old autistic son to Centers for Success with both intrigue and skepticism. When we first began, John had been through only 2 months of traditional early intervention therapies, such as Speech, Occupational Sensory, some in-home play, and an Early Start Preschool. He had been significantly developmentally delayed in all areas. His speech (at 30 months old), was tested like that of a 6-9 month old. His cognitive skills tested at a 10-17 month level. 6 months ago (at two-and-a half years old), John had no attention span, could not sit still, jumped form one activity to another, was in constant motion, grinded his teeth, chewed on his shirt collars, did not sleep through the night, had eating issues, had little-to-none imaginary play skills, could not ride a tricycle, and did not socialize with other children. When he was tested, they couldn’t complete many sections because he wouldn’t focus for them, wouldn’t respond to his name, wouldn’t point to a single object when asked, and was constantly running around the room, flipping on and off the light.

To date, John has had 50 sessions of Neurofeedback over 4 months time, and we are still planning on more. He rapidly progressed in his developmental skills, including bringing his speech to a 31-month level and his cognitive to 33 months (he is currently 36 months old). Among his skills, include riding a tricycle, which has become a favorite outside activity now. His imaginary play has grown by incredible strides, moving from cause-and-effect toys to playing with cars and blocks, as well as playing kitchen, grocery store, and even ‘brain school’(neurofeedback). He uses Play Dough as the “sticky stuff”, grabs headphones, and tells me he needs a movie! His retention has increased, which he can show us through the speech skills he has gained. He can now sit still through the reading of a book, which was something that he had never done before. We used to try just looking at pictures and ignoring the words, but he still couldn’t do that. Now, he’s interested in listening to someone read and can sit in a ‘big’ chair, without having to strap him in a high chair or booster. He has enough attention to sit and complete tasks, such as puzzles or stringing beads in patterns.

Socially, John has grown in his interaction with his 4-year-old sister, engaging in play and laughing at jokes between the two of them. He initiates hugs for bedtime, holds her hand, and plays prince and princess with her. He can play on his own, entertaining himself with age appropriate toys. With other children, John will say hello and goodbye, but his play is still more parallel in nature and not too much of engagement.

Behaviorally, we have watched John grow through different developmental stages. Prior to any early intervention, John was often frustrated due to his lack of communication and ability to do things for himself. He would often act out by throwing things or cry inconsolably. He’d cry until he fell asleep, often 30-45 minutes. As he became calmer and his skill levels increased, we watched the behavior change. He had more control. We then entered a stage of transitional tantrums, which only lasted about 1-2 weeks, but he’d cry as activities would end. Centers for Success changed some protocols and the calmness then took over, and the tantrums ended. We went on a vacation that included a 5-hour plane flight. John had no problems sitting in his airplane seat, happy and calm, for the entire trip (both on the way there and on the way home). We are currently in a new behavioral phase, which includes tantrums because John doesn’t get his way. This is different from the transition tantrums. These are in direct result of not getting what he wants and are in complete protest. He’s learning that he can communicate his wants to us, and protesting when we don’t oblige.

John’s diagnosis has changed from an “autistic disorder” to “PDD-NOS”, (Pervasive Developmental Delay, “not otherwise specified”) meaning there are signs of autism, but not enough for a Classic Autism or Asperger’s diagnosis. John has made HUGE progress since his first examination 6 months ago and beginning Neurofeedback 4 months ago. John still has a way to go, but life today is so different than it was back then. It’s more manageable from a parental standpoint and less frustrating from John’s standpoint. We are continuing with all of the therapy because it’s all working together. Neurofeedack has made it possible for John to be calm and attentive to learn the skills to catch up to his peers. He’s also learning to efficiently use his brain, increasing his maximum potential, during this time of early intervention. The rate at which he’s developing is incredible. Socially, John has grown in his relationship with his sister and I am hoping to report that this carries over into his relationship with other children. SO, until next time, this is “to be continued”….

Visit with Dr. Bauman & John's Diagnosis

On Tuesday, John, Bill and I visited Dr. Margaret Bauman, who is an Autistic Specialist in Child Neurology out of Massachusetts General Hospital. She works with Children's Services at Casa Colina and travels every quarter to visit. We had an hour-and-a-half appointment with her for a second opinion/diagnosis and next steps.

First of all, I want to say that it was a pleasure to talk to her. She does research into the causes of autism, as well as treating patients with Autism and has a good understanding of the development of children. She suggested so many things and gave us such a good analysis of the situation.

To see Dr. Bauman, an exetensive packet of information must be supplied that includes birth records, hospital records, any testing scores, analysis, or assesments, etc. She also met with John's teachers at Casa Colina and spoke to them about their observations. When Bill, John and I arrived, we went into an office with lots of toys to keep John occupied. (6 months ago, they wouldn't have kept his attention, but today, John was able to play most of the time without being re-directed. During the last half hour, he became more 'needy' of my attention and even started to do things like climb on the table and laugh after I told him to stop)

Dr. Bauman talked to Bill and I a long time, asking us questions about his development, behaviors, things we've noticed, therapies we've done, improvements we've made, etc. After our discussion, she gave us her assesment of John.

She believes that John has PDD-NOS. To understand this, let me break it down.

PDD is the category, which is Pervasive Developmental Disorder.
There are 5 disorders that fall under the PDD category. They include Autism, Asperger's, Rhett Syndrome, fragile X syndrome, and PDD-NOS.

In simple terms, the NOS, means Not Otherwise Specified, meaning that many symptoms are present that resemble those other 4 disorders, but not enough to receive a diagnosis.
Now, to make it clear, PDD is the autistic SPECTRUM, so all 5 of these diagnosis are on the spectrum, but to a varying degree, with PDD-NOS being the one that shows the least amount of symptoms.

There are a few things that she pointed out that are a cause for concern. A few that we talked about are:
- his lack of interest in people, limited eye contact
- his play skills (allows others to set the framework of play and then he 'learns' play, rather than naturally picks it up)
- his irregular sleep patterns
- sensory issues
- eating issues

In moving forward, she would like to find out WHY John is showing these symptoms and if other things are wrong. She is sending us to 3 other specialists to begin with.

1. a developmental optomitrist - She wants visual perception, visual tracking, and depth perception looked at. Not what he sees, but how he sees. This could lead to an explanation of limited eye contact or limited social interaction. (From PubMed.Com: The role of the optometrist in treating children experiencing learning disabilities embraces numerous areas beyond the customary optometric services. Etiological, diagnostic and therapeutic factors are discussed stressing visual functional disorders, perceptual-motor and developmental lags and cognitive style.)

2. a Gasteroentologist, which will test him for acid reflux, which could explain his poor sleeping patterns, resulting in tired, lazy, and poor concentration/attentive skills. She also wants them to confirm or rule out a lactose intolerence, so we know if we should keep him on or off dairy.

3. a Neuro Psychologist that would look at cognitive skills and agree/disagree with the diagnosis. A neuropsychologist is a psychologist who specializes in studying brain behavior relationships. Neuropsychologists have extensive training in the anatomy, physiology, and pathology of the nervous system. (Sensory issues & problems deal with the brain's inability to process the information correctly that the nervous system is sending it) This person can also be involved in the IEP (Individualized Education Plan) meetings with the School District. She can help to be an advocate for John's Educational Needs.

After seeing these 3 specialists, we will then re-visit Dr. Bauman in January.

The other thing that is recommended to do is at Casa Colina. We are getting a swallow test done with a speech pathologist. The teachers at Casa think he is aspirating while eating. (inhaling food/debris into the wind pipe or the lungs) This is caused by apraxia or low tone in the mouth. Basically, poor oral motor skills causing his muscles within his mouth to not work together while eating. (She also told the START teachers that we may want to consider a sleep study because if he is truly not sleeping well, it would explain many of the symptoms John shows during the day from lack of sleep.--although she didn't mention it to Bill & I)

Now, as far as moving forward with his "education", she gave us a bunch of advice. She says she does not want to see him in an autistic class or a class with kids who have behavioral problems because she believes John needs models in the classroom to teach him how to interact socially. She is afraid that it will hinder his development to "learn" by picking up on autistic behavior and not have a model that he can raise up to. She said that Katie has been John's best teacher and helps to structure his play.

So, she recommends that he be put in a preschool program that is "integrated" with children who are "normal" , as well as slightly delayed, but not with kids that have behavioral problems for fear he'd model the behavior. She wants him in the bottom or the middle, as far as skill set, but not at the top. She says other states have wonderful programs for this, but she doesn't think California has anything set up like this. She said that the integrated class would have 2 teachers and then a one-on-one aide for John to be guided back into participation if he wanders.

For me, Dr Bauman's words, diagnosis, and advice validated all the feelings that I have had --- some days feeling like it's "textbook autism" and then other days that seemed like the diagnosis was wrong. But, to be clear, the diagnosis was never wrong. 6 months ago John was a different kid. He had no speech, his cognitive level was very immature, he had no joint attention (ability to point out objects), etc. After understanding this disorder, the only diagnosis he should have received 6 months ago was autism. The fact that we are at PDD-NOS is an indication that early intervention is working, that Neurofeedback is working, and that with prayer, hope, hard work, and a battle plan, there is a chance for healing.

The Autism Spectrum

Autism is a disorder of the brain that happens while child is still growing. It is a developmental disorder because it affects how a child develops. Autism is a syndrome and not a disease. It's not a case of "having it" or "not having" it. There are varying degrees of autism and the different "kinds" of autism appear on what is known as the "autism spectrum".

According to "What is Autism", handed out by the California Regional Center, the 'autism spectrum disorders' are as follows:

Autistic Disorder: Children with this kind of autism have all the behaviors of autism. This kind of autism is also called "classic autism"

Asperger Syndrome: Children with this kind of autism often have good language skills and high intelligence, but they may have problems relating to others and may have only very specific interests.

Pervasice Developmental Disorder- Not Otherwise Specified (PDD-NOS): Children with this kind of autism have some behaviors of autism but not all. Many children with this have fewer difficulties than those with classic autism.

John on the Autistic Spectrum

According to John's evaluation done by Regional Center, they list that "this pattern of developmental challenges meets the criteria for a diagnosis of Autistic Disorder". John does NOT have good language skills, as that was the main reason I took him in, so a diagnosis of Asperger Syndrome would not have been given at the time.

However, they also recommended a re-testing "after he has had sufficient time to benefit from educational services, and when cognitive abilities can be more reliably determined".