FEEDBACK FROM PARENTS OF COHORT #1
At the end of each school year, parents were sent surveys to give them the opportunity to provide input on their child and their child's program. For Cohort #1 (parents of students who began study in 1998), over 50% returned their surveys at the end of each school year. Their responses can be found in Tables 1a to 1t below.

Changes in Skills and Behaviors
 Each year parents were asked to advise us of changes in their child's skills and behaviors. Tables 1a and 1b show the percentage of parents who each year answered that their child's skills or behaviors decreased, stayed the same, or increased during the school year. In the majority of areas listed below, parents thought their childrens' skills or behaviors had increased in all four school years.


TABLE 1a (Parent Responses)
Cohort #1 - Students who began study in 1998
CHANGES IN SKILLS OR BEHAVIORS
Question Asked: Please let us know whether these skills or behaviors have decreased, stayed the
same, or increased for your child during the school year:
1999/2000
School Year (N=41)
2000/2001
School Year (N=39)
Skill or Behavior
Decreased
Stayed
the Same
Increased
Decreased
Stayed
the Same
Increased
Using language or other
means to communicate
0%
7%
93%
0%
3%
97%
Using spontaneous communication to request foods, toys, or activities
0%
15%
85%
0%
10%
90%
Labeling items and pictures in response to questions
0%
27%
73%
3%
27%
70%
Understanding and responding to directions
0%
10%
90%
0%
5%
95%
Imitation of other children and adults during play
0%
34%
66%
3%
33%
64%
Playing with toys in ways that are appropriate to his/her age
0%
29%
71%
3%
38%
59%
Play with other children
3%
29%
68%
5%
36%
59%
Engagement in imaginative or pretend play
0%
46%
54%
2%
58%
40%
Self-care and independence in areas such as eating, dressing, and toileting
3%
29%
68%
0%
38%
62%
Appropriate behavior
2%
25%
73%
8%
31%
61%



TABLE 1b (Parent Responses)
Cohort #1 - Students who began study in 1998
CHANGES IN SKILLS OR BEHAVIORS
Question Asked: Please let us know whether these skills or behaviors have decreased, stayed the
same, or increased for your child during the school year:
2001/2002
School Year (N =37)

2002/2003
School Year (N = 31)

Skill or Behavior
Decreased
Stayed
the Same
Increased
Decreased
Stayed the Same
Increased
Using language or other
means to communicate
3%
19%
78%
0%
10%
90%
Using spontaneous communication to request foods, toys, or activities
3%
19%
78%
0%
16%
84%
Labeling items and pictures in response to questions
0%
42%
58%
0%
26%
74%
Understanding and responding to directions
3%
24%
73%
0%
13%
87%
Imitation of other children and adults during play
3%
39%
58%
0%
19%
81%
Playing with toys in ways that are appropriate to his/her age
0%
46%
54%
0%
36%
65%
Play with other children
3%
41%
56%
0%
35%
65%
Engagement in imaginative or pretend play
2%
49%
49%
0%
42%
58%
Self-care and independence in areas such as eating, dressing, and toileting
3%
38%
59%
0%
29%
71%
Appropriate behavior
3%
40%
57%
0%
32%
68%




Description of Changes in Skills or Behaviors
Parents were asked to describe any changes they had seen in their child's skills or behaviors. Their responses can be found in Tables 1c (1999/2000 results), 1d (2000/2001 results), 1e (2001/2002 results), and 1f (2002/2003) below:
TABLE 1c (Parent Responses)
Cohort #1 - Students who began study in 1998
DESCRIPTION OF CHANGES IN SKILLS OR BEHAVIORS
Question Asked: Please describe any other changes in skills or behaviors you have seen in your child this past school year:
1999/2000 School Year (N=41)

Comments regarding communication/language:
My child's communication skills have improved (3)
Expressive communication has greatly increased (2)
Receptive communication is incredible.
My child's ability to use pecs.
My child has a greater sense of the rhythm of language.
Responds better to directions.
Babbles more.
My child is using a picture book to request things.
Language & communication have increased.

Comments regarding social interaction or play:
My child is more aware of surroundings. (3)
Likes to help others.
My child no longer totally freaks when new people try to interact with him/her.
More social.
A general increase in desire and ability to interact with other people.
My child now loves to play with other children.
My child has become less tolerant of disabled peer interaction.
More connected to other people.

Comments regarding inappropriate/appropriate behaviors and emotions:
My child has started screaming when he doesn't like something.
Less tantruming.
Decrease in inappropriate behavior.
Much less volatile.
He has been hitting, spitting, and generally being silly at inappropriate times.
My child still needs work on regulating self.
Can sometimes calm self.
My child sings to her/himself.

Comments regarding sensory issues:
Has intense need to be squeezed.

Comments regarding independence:
Still has trouble transitioning, but it is getting better.

Comments regarding motor skills:
Gross motor skills have increased drastically.
My child is able to ride a bike.

Comment regarding generalization:
My child has been able to generalize skills with others.
Applies skills learned at school to home situations.

Comments regarding learning/improvement/academics:
This has been a positive year. Gains have been made in all areas.
Learned structured teaching schedule helped with increased self-confidence.
Learns very quickly after seeing things demonstrated.
My child's complete attention is not needed to hear/understand a direction.
My child is making amazing progress.
My child is doing really well.
Very little changes this past year.
Attempting consonants.

( ) = number of parents who gave similar response / No parentheses = 1 parent gave this comment

 

TABLE 1d (Parent Responses - Cohort #1)
Cohort #1 - Students who began study in 1998
DESCRIPTION OF CHANGES IN SKILLS OR BEHAVIORS
Question Asked: Please describe any other changes in skills or behaviors you have seen in your child this past school year.
2000/2001 SCHOOL YEAR (N=39)

Comments regarding communication/language:
My child's communication skills have improved. (4)
My child is babbling more and making more sounds. (2)
My child understands/responds to oral requests better. (2)
My child is using picture board at home

Comments regarding social interaction or play:
My child has better eye contact. (3)
My child wants to interact with other children now. (2)
My child is more social. (2)

Comments regarding inappropriate/appropriate behaviors and emotions:
My child's behavior has become more aggressive. (2)
My child has had a decrease in negative behaviors. (2)
My child's anxiety level has increased.
My child is showing more inappropriate behaviors.
My child has less self-injurious behaviors.
My child is more willing to negotiate and compromise.
My child is displaying more appropriate behavior.
My child tantrums more now if he doesn't get his way.
My child is happier.

Comments regarding sensory issues:
My child's reading skills have greatly improved. (2)
My child has increased sensory needs.
My child likes to be rubbed vigorously.
My child started writing

Comments regarding learning/improvement/academics:
My child is more aware of surroundings. (3)
My child is doing great. (2)
There has been small to moderate increases in my child's learning.
When my child was mainstreamed into typical first grade, he digressed in many areas.
My child has learned many new things.
My child has made progress but still has not caught up to age level.
My child has made amazing improvements.
My child still has trouble with transitions.

Comments regarding independence:
My child is now using the bathroom/my child is toilet trained. (3)
My child is become more independent - often says, "I do myself" if I try to help him.
My child has had an increase in using utensils.
My child is more temperamental, especially when it comes to protesting or asserting independence.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment

 

TABLE 1e (Parent Responses - Cohort #1)
Cohort #1 - Students who began study in 1998
DESCRIPTION OF CHANGES IN SKILLS OR BEHAVIORS
Question Asked: Please describe any other changes in skills or behaviors you have seen in your child this past school year.
2001/2002 SCHOOL YEAR (N=37)

Comments regarding communication/language:
Academic abilities have greatly improved. (3)
Talking & babbling a lot more now.
She talks more.
We understand what she wants better. We are pleased.
Seen an increase in expressive communication.
Answers phone with hello.
More spontaneous language.
Increased vocabulary.
Still does not verbalize thoughts, ideas, wants or needs.
Able to use and understand cue cards in schedule.
Developing greater understanding of others point of view.
My child now uses language to express needs or concerns instead of having a meltdown.

Comments regarding inappropriate/appropriate behaviors and emotions:
My child's behavior has gotten worse. (4)
Less tantruming. (2)
He is very independent (not always in the best interest of his safety.
Behavior has improved.
Home-schooling has improved my child's behavior.
My child is taking the drug Risperdal and his outbursts have decreased dramatically.
We see different forms of self stimming behavior now.
More frustration.
My child is more flexible.
More self-stimming.
My child has more good days than bad
Happier outlook.
Less mood swings.
He has become more emotional and emotionally needy.

Comments regarding social interaction and play:
Increase in social interaction. (3)
Plays & interacts more now with other children in class. (2)
My child has more eye contact.
My child has more interaction with adults.
My child holds hands with other children in line when directed.
Starting to have an imagination.

 Comments regarding independence:
Better toileting skills now. (2)
Started riding regular bus and is doing well.
My child eats better.
My child has regressed in area of self-care.

Comments regarding motor skills:
Rides bike with training wheels.

Comments regarding learning/improvement/academics:
My child has increased in most areas.
Participates more in class.
My child matches a lot better.
Learned to write numbers and letters.
Reading skills have increased a lot!

Other comments:
My child can play the harmonica through his nose!

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment


TABLE 1f (Parent Responses - Cohort #1)
Cohort #1 - Students who began study in 1998
DESCRIPTION OF CHANGES IN SKILLS OR BEHAVIORS
Question Asked: Please describe any other changes in skills or behaviors you have seen in your child this past school year.
2002/2003 SCHOOL YEAR (N=31)

Comments regarding communication/language:
Uses PECS more.
My child is more verbal this school year.
My child's vocabulary is amazing.
Starting to hold phone conversations and converse with others his age (sometimes).
Babbling alot, talking in own language, and getting sounds out.
Communicating more and more social.
My child had parts in two programs that required him to speak in front of all parents and did great.
Using VBA/errorless teaching at home, my child has learned to speak and expressively request, label, comment, and describe.

Comments regarding inappropriate/appropriate behaviors:
Doesn't throw as many fits.
My child was very happy this year, due to a much better classroom placement, unlike the year before.
Has more fixative or obsessed behaviors.
Behavior problems made it so my child did not got to school most of the 2002/03 school year.
Has had perfect appropriateness.
Can get naughty when bored, and will urinate in strange places.
Doesn't run away as much.
My child has more obsessiveness and anxiety.

Comments regarding emotions:
Seems to get depressed or sad more and feels different from other kids.
Is concerned about getting older, and is afraid of death, and thinking of this causes sadness.

Comments regarding social interaction and play:
More eye contact. (2)
After starting meds, his socially inappropriate behaviors have decreased.
Has a lot more pretend play.
Talking to toys.
As my child becomes more aware and interacts, she is becoming more anxious.

Comments regarding independence:
My child is not potty trained.

Comments regarding motor skills:
My child has improved in fine motor-cutting and writing skills.

Comments regarding learning/improvement/academics:
Understands directions more.
My child can calculate and see patterns.
My child has an increased acquisition rate in math skills and a greater interest in books and songs due to VBA/errorless teaching.
Math and writing skills have increased.
My child has a greater willingness to learn.
Continually adds new songs - she can whistle on key.
Increase in logical thought and ability to adapt to change.
My child has made tremendous leaps in academics (math, writing, reading and spelling).

Other comments:
Tries new foods more.
Continues to improve in all areas.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment



Parent Involvement
Parents were asked to rate their involvement level and their satisfaction with their involvement level in their child's early childhood or school-age program. Table 1g shows that parents rated their involvement level, between 7.54 to 7.66 for all four years (10 = intensely involved........1 = not involved at all).

When rating how satisfied they were with their level of involvement, the mean rating for parents in the 1999/2000 school year was 6.95, then increased to 7.21 in the 2000/01 school year, decreased to 6.41 in the 2001/02 school year, and increased to 7.03 in the 2002/2003 school year (10 = extremely satisfied........1 = not at all satisfied).
TABLE 1g - (Parent Responses)
Cohort #1 - Students who began study in 1998
INVOLVEMENT LEVEL IN CHILD'S EARLY CHILDHOOD
OR SCHOOL-AGE PROGRAM
Question Asked
Mean
1999/2000 School Year
(N=41)
Mean
2000/2001
School Year
(N=39)

Mean
2001/2002
School Year
(N= 37)

Mean
2002/2003
School Year
(N=31)
Please rate your level of involvement with your child's early childhood or school-age program.
(Scale: 10 = intensely involved / 1 = not involved at all)
7.66
7.59
7.54
7.65
Please rate how satisfied you are with your involvement with your child's early childhood or school-age program.
(Scale: 10 = extremely satisfied / 1 = not at all satisfied)
6.95
7.21
6.41
7.03

Services Received

Satisfaction with Services Received
Parents were asked whether or not they were satisfied with the amount of services their child received and the quality of services their child received. Table 1h shows that 69% of the parents in the 1999/2000 school year, 71% in 2000/2001 school year, 58% in the 2001/2002 school year, and 67% in the 2002/2003 school year either agreed or strongly agreed with the amount of services their child received.

When asked about the quality of their child's services, 81% in the 1999/2000 school year, 71% in the 2000/2001 school year, 75% in the 2001/2002 school year, and 84% in the 2002/2003 school year agreed or strongly agreed that they were satisfied with the quality of services their child received.

 

TABLE 1h - (Parent Responses)
Cohort #1 - Students who began study in 1998
AMOUNT AND QUALITY OF SERVICES

 

School
Year

Statement and Agreement Level
I am satisfied with the amount of services my child received
I am satisfied with the quality of services my child received
Strongly Disagree DisagreeAgreeStrongly Agree Strongly Disagree DisagreeAgreeStrongly
Agree
1999/2000 School Year
(N=41)
2%
29%
59%
10%
7%
12%
39%
42%
2000/2001 School Year
(N=39)
5%
24%
55%
16%
8%
21%
45%
26%
2001/2002 School Year
(N=37)
14%
28%
41%
17%
8%
17%
53%
22%

2002/2003 School Year
(N = 31)

10%23%50%17%10%6%47%37%

 

What parents liked about the services their children received
.Parents where asked what they liked about the services their children received during each school year. Tables 1i to 1l show their comments for the 1999/2000, 2000/2001, 2001/2002, and 2002/2003 school years. The most common responses given by the parents on why they liked about their child's services, centered on the teaching staff.. They thought their teachers and instructional assistants were "good," "caring," "patient," "knowledgeable," and "wonderful."
TABLE 1i - (Parent Responses)
Cohort #1 - Students who began study in 1998
WHAT PARENTS LIKED ABOUT THEIR CHILD'S SERVICES 1999/2000 School Year (N=41)
Question Asked: What do you like about the services your child received?

Good instructional assistants. (5)
Good teachers. (4)
Caring teachers and/or instructional assistants. (4)
Communication is very good with the staff. (3)
Knowledgeable/well trained teachers and/or staff. (3)
Emphasis placed on one-to-one instruction. (3)
Highly skilled staff. (2)
Staff is very receptive to parent input.
The teachers are very patient with my child.
I really like the staff.
I like the teaching style.
Parent involvement is encouraged.
We have developed good relationship with the teacher and therapists.
Staff is very cooperative.
Staff are very committed.
Close and detailed association with instructors - we do a lot of planning together.
I love my child's program.
Everything.
Home services.
The number of school hours.
Full day service was great - he made remarkable improvements.
Consistency.
Related services staff is very competent and knowledgeable.
The school age program works with me respectfully and honestly.
Involvement with typically developing peers.
My child has really been helped a great deal.
Great interventions.
Structured teaching.
Services are focused and specialized.
My child has come a long way since being in the program.
The district provided psychologist visiting our home.
There is a good balance between one-to-one and enticing him to work in a group.
The services really helped.
The effort made to develop a child's full spectrum of skills.
The "Teach Me Language" Program.
My child got to be part of studies that count for something.
My child gets speech therapy when needed.
My child learned critical skills to ask for help and recognize a need for a break.
My child learned to use a schedule for daily activities & work.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment

TABLE 1j - (Parent Responses)
Cohort #1 - Students who began study in 1998
WHAT PARENTS LIKED ABOUT THEIR CHILD'S SERVICES 2000/2001 School Year (N=39)
Question Asked: What do you like about the services your child received?
Caring/helpful/patient teachers and/or instructional assistants. (13)
Services were customized/specialized to my child's needs. (6)
Good teachers/instructional assistants. (6)
Emphasis placed on one-to-one instruction. (3)
Highly skilled staff. (3)
Knowledgeable/well-trained teachers and/or staff. (2)
Communication is very good with the staff. (2)
My child has really been helped a great deal. (1)
Classroom structure was excellent.
A variety of services were offered.
My child's program has served my children very well.
The fact that my child has had some services at all.
My child enjoys going to school.
They have been consistent and provide a routine.
He is expected to perform to the level of his peers.
They are making an effort to keep up with current teaching trends in autism.
We have received services in our home.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment
TABLE 1k - (Parent Responses)
Cohort #1 - Students who began study in 1998
WHAT PARENTS LIKED ABOUT THEIR CHILD'S SERVICES 2001/2002 School Year (N=37)
Question Asked: What do you like about the services your child received?
Staff communicates very well. (6)
Staff willingness to accommodate or adapt to my child's needs. (5)
Qualified/knowledgeable staff. (4)
Staff is very caring. (3)
There aren't enough services in our small town, but we are happy with what is available. (2)
One-to-one teaching. (2)
Staff knows my child very well. (2)
Nothing. (2)
I love the staff.
Consistent, persistent programming.
The staff is somewhat agreeable to his needs.
The staff who work with my child.
The staff are advocates for my child.
IEP.
Small classroom.
Staff is great.
My child has made giant leaps so that speaks for itself.
My child attends a Christian school and we are very happy with it.
I think they are doing a great job.
Consistency.
My child is learning life skills, such as cooking.
Intensive services.
Gets appropriate structure.
Gets appropriate amount of time in his typical kindergarten class.


( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment


TABLE 1l - (Parent Responses)
Cohort #1 - Students who began study in 1998
WHAT PARENTS LIKED ABOUT THEIR CHILD'S SERVICES 2002/2003 School Year (N=31)
Question Asked: What do you like about the services your child received?

The staff is great/terrific/wonderful/very good. (10)
Caring/loving staff (5)
Everyone seems to care about my child's success. (2)
The staff are very knowledgeable.
Staff really follows through with frequent updates and to progress.
The specialist never gives up.
The specialists are great.
The one to one aide this year was great.
The keep keep my child interacting.
Instructional assistant received training.
Team coordination.
Most important: my child is happy and enjoys school.
My child's 1:1 time.
The ERC classroom is perfect for my child, with the right amount of staff and structure.
He has his own "cubicle".
Excellent support - had 2 aides in classroom with visual cues.
My child has a lot more small group learning.
I loved my child's teacher and aides.
Current providers are effective and facilitate assimilation of substantive curriculum.
Wonderful program that helped my child make big academic strides this year.
I am happy with the skills level and problem solving abilities of the specialists administering program.
My child has structure and a schedule.


( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment


How Services Could be Improved
In addition to asking the parents what they liked about the services their child received, parents were also asked to give input on how services could be improved. Tables 1m to 1p show their responses for the 1999/2000, 2000/2001, 2001/2002, and 2002/2003 school years. Common improvements parents thought were needed included, "summer services," "more training for staff'," "more speech therapy," and "better communication."

TABLE 1m - (Parent Responses)
Cohort #1 - Students who began study in 1998
HOW PARENTS THOUGHT SERVICES COULD BE IMPROVED
1999/2000 SCHOOL YEAR (N = 41)

Questions Asked: How could services be improved?

Summer school schedule should be the same as the school year - my child needs services all year. (4)
My child need more hours. (3)
My child's sensory issues need to be dealt with. (2)
More services to support the entire family. (2)
My child's teacher needs to care about the kids and get training and learn communication skills.
Generalizing discrete trial tasks into other environments.
Need day-to-day communication with the staff.
Keeping up on how quickly my child masters a task
More guidance and support.
More information on options available.
More one-to-one.
More one-to-one speech therapy.
Monthly meetings are needed to keep parents up to date.
Give teachers more support from their superiors to do what they need to do.
Better play area.
Home visits.
More parent involvement.
Put more priority on learning things useful.
The teacher needs more knowledge.
The bus drivers are a problem - they refuse to let parents help their children on and off the bus.
Services my child is receiving in early intervention, should also be given in elementary school.
Need more emphasis on speech therapy.
Need more help for an autism specialist.
Better communication between staff and parents.
More money to provide services.
Smaller mainstream classes to better provide placement options.
Help the parents be more resourceful.
Individual staff should introduce themselves to the parents.
No suggestions - my child's program needs to stay as it is.
Mandatory courses for staff to focus on autism awareness, effective approaches, and strategies.
A certification test should be given to staff to work with individuals with autism.

( ) = Number of parents who gave similar response

TABLE 1n - (Parent Responses)
Cohort #1 - Students who began study in 1998
HOW PARENTS THOUGHT SERVICES COULD BE IMPROVED
2000/2001 SCHOOL YEAR (N = 39)
Questions Asked: How could services be improved?
Staff needs more training in how to specifically work/teach children with autism. (8)
My child need more one-to-one. (5)
More funding. (4)
Summer school schedule should be the same as the school year-my child needs services all year. (3)
Need more emphasis on speech therapy. (3)
Nothing - I am a satisfied with my child's services. (2)
Better communication between staff and parents. (2)
My child's sensory issues need to be dealt with. (2)
More services to support the entire family. (2)
Better communication between our intensive services program and the school district.
My child is thrown into one room with students with mixed disabilities.
My child need more hours.
My child needs an assistant to help him with writing.
More training for parents.
Competency of leadership.
I would like my child to be in a class with 10 kids - 2 with autism and the rest typical.
There needs to be more of an emphasis into functionalizing skills learned in one-to-one.
More instructional assistants.
I need to be more involved.
I assist everyday at recess and lunch - my child needs an assistant to help with behavior issues.
More help with how to respond with the right responses in social situations.
There needs to be a better tool for teaching my child communication.
My child need more direct instruction.
The bus services in my district have been very poor - they border on abuse!
Teachers need to be better trained-my child spends all his time with an educational assistant.
My child needs more services.
They need to follow through on things we discussed they are needed for my child.
Instructional assistant could have been more involved.
Kids should be tested on learned information in different environment to see if they generalize.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment

TABLE 1o - (Parent Responses)
Cohort #1 - Students who began study in 1998
HOW PARENTS THOUGHT SERVICES COULD BE IMPROVED
2001/2002 SCHOOL YEAR (N =37)
Questions Asked: How could services be improved?

Summer services/ESY. (4)
Better services for small towns. (2)
More services/time. (3)
More one-to-one services.(3)
Staff needs more training.
More of a "team", including parents.
There needs to be more consistency.
Staff needs to know how to take my child to the next level of education.
Allow toddler sibling into class to visit.
Need more funding to pay for needed assistants and teachers.
Schedule should be the same daily.
Autism specialist needs to work with my child more.
Need more communication and feedback from school.
More outside classroom peers interaction.
More money and resources need to be available to the school district.
Staff needs training, training, training.
IEP needs to be more specific.
Staff needs to understand and support the bio-medical portion of the child's therapy
Allow for more social time and interaction.
More communication needed between staff and parents.
More attention by teachers.
Speech sessions are a joke.
Need more options for younger kids (e.g., days camps, role playing, socialization skills)
More understanding on how differently autism can affect each child.
Staff needs to look for other strategies when one is not working.
Very dissatisfied with the school-age program and believe it caused inappropriate behaviors to spike.
My child and I could have used some kind of advice for ongoing challenging behavior.
Only her regular classroom teacher would help us. I could get no other services for my child.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment




TABLE 1p - (Parent Responses)
Cohort #1 - Students who began study in 1998
HOW PARENTS THOUGHT SERVICES COULD BE IMPROVED
2002/2003 SCHOOL YEAR (N =31)
Questions Asked: How could services be improved?

Extended school year/more summer services. (3)
More training for the staff. (3)
More 1:1 speech therapy (3)
Better and more speech therapy (2)
Better funding. (2)
More services (2)
More respect for parents views.
More help.
Better communication between teachers (classroom, music, theater) and parents.
Music lessons should be offered - you might be surprised at outcome.
More occupational therapy for fine motor skills.
Staff needs to know how to work with higher functioning children with autism.
Pay more attention to individual student and adapt teaching style.
Need staff that highly skilled to deal with aggressive behaviors.
Nothing - they are doing just fine.
Services have greatly improved this year with the hiring of a new teacher.
Better computers
My child is in a private school. We had to get a second mortgage. I wish we could get public help.
More resources for staff.
More behavioral services like social skills, communication, appropriate behavior, role playing, & safety.
Better "non-combative" communication between district and IEP team members and parents.
More involvement from autism consultant.
More small classes/reverse mainstream groups available for permanent placement.
More 1:1 time and less time left alone.
More visits from the autism specialist (they have been very helpful).
I wish my child could have an autism specialist with him everyday.
Whole experience was unsatisfactory - removed child from public school and now home school.
The quality of behavioral intervention in school district inadequate.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment


Treatments or Services provided by parents
In order to determine if other factors were affecting their child's educational progress, parents were asked to report any treatments their children were receiving or had received during each school year. Tables 1q to 1t show the parent responses for 1999/2000, 2000/2001, 2001/2002, and 2002/2003 school years. Common treatments listed by parents included gluten-free/casein free diets, vitamins, secretin, and supplements.

TABLE 1q - (Parent Responses)
Cohort #1 - Students who began study in 1998
Treatments or Services Provided by Parents
During the 1999/2000 School Year (N=41)
Gluten-free/casein free diet (8)
Secretin (7 )
Vitamins (6)
DMG (5)
ABA programs (4)
Magnesium (3)
B-6 (3)
Swimming (3)
Dairy free diet (3)
Speech therapy (3)
Private preschool (3)
Gluten free diet (3)
Yeast-free diet (2)
Audio sensory training (2)
Respite care (2)
In-home aide to assist with functional skills (2)
Occupational therapy (2)
Fungal probiotics therapy
Swim therapy Psychologist
Music therapy
Melatonin
Violin
Naturopathy physician's care
Floor time therapy
Private therapy
Home program to teach independent tasks
Tutoring for academic skills
Therapeutic horseback riding
Less sugar
Autism Research Project at OHSU
Autism Research Institute
TMG
Zinc
Calcium
Naturopath her regimen
Prozac

( ) = number of parents who gave similar response / No parentheses = 1 parent gave this comment
TABLE 1r - (Parent Responses)
Cohort #1 - Students who began study in 1998
Treatments or Services Provided by Parents
during the 2000/01 School Year (N=39)
Treatment ReportedComments (not all parents gave comments)
Gluten-Free/
Casein-Free
Diet (13) 		We tried it but quit (2)
Been on it for 1 ½ years
On it for 9 months - it has improved everything
Tried it for 7 months - no notable changes
Tried it for 1 ½ years
It was hard to follow - didn't see any great positive changes - so we quit
We tried it for 10 months, but stopped because no improvement was noticed
Has improved drooling and involuntary body movement was reduced
Saw immediate positive behavior changes & is progressing quicker than before
Been off & on diet - When she's off, we notice gut problems
It didn't work so we quit
Dimethyl glycine- DMG (11) Stopped because he was self-abusing more.
She always takes this (4 times a day) - without it she is totally different
One month trial - no improvement
This has helped with attention and speech
No noticeable difference
Works very well
Vitamin B-6 (9) Used for 2 years, but stopped on doctor's advice
On & off for 4 years - I think it helps but has a nasty taste
Helps keep him calm & he have improved eye contact
Tried it, but he hated the taste so we quite
Works very well
Secretin (9) One injection in 1999 (3)
No improvement noticed (2)
Four shots in 1999
On and off over the last few years Three months - no change good or bad
Works very well
Super Nu-Thera (6) We have observed a decrease in stimming with this vitamin
Eye contact, overall sensory issues have been helped
Melatonin (5) Daily sleep-aid (3)
Magnesium (2) Has helped to increase bowel movements
Alpha-Lipoic-acid For detoxification for 3 months
Phytobears Helps keep him in good health
Homeopathy treatment Still trying - not sure if it is working
Xanax Xanax is used to attend church
Glconutrients: Ambrotose & PhytAloe No behavior changes noted thus far
Neurontin Was prescribed to help with anxiety - Did not work
Tegretol It's working for us
Kava Kava Lowers stress
Chemet My child is taking this to decrease the level of toxic substances in his body
"Dan Protocol" Taking for detoxification
Risperidol Working well to help her manage self & process information
I give my child no treatments It's bunk
Other treatments listed with no comments: Daily multi-vitamin (5), Fish oil (2), Dairy-Free Diet (2) Topamax (1), Paxi (1), Low sugar diet (1), Omega 3 (1), Hypo-sorbate Calcium (1), Rice protein (1), Zinc (1), Iron (1) , and Vitamin C (1)

( ) = number of parents who gave similar response
TABLE 1s - (Parent Responses)
Cohort #1 - Students who began study in 1998
Treatments or Services Provided by Parents
during the 2001/02 School Year (N=37)
Treatment ReportedComments (not all parents gave comments)
Casein-Free Diet (16)

Got sick so we stopped.
Beneficial
Tried it, but quit because saw no effect.
Good for weight control.
Does seem to help some but not to the degree we hoped.
Tried it but quit.
We've seen a big change in cognitive & academics, but my child is still hyper.
Tried for 2 years, but are now stopping.
Tried it for 1 month, but stopped due to extreme negative reaction to changes My child has been on it for 2 years.

Gluten-Free Diet (15) Got sick, so we stopped
Tried it, but quit because saw no effect.
Good for weight control.
Does seem to help some but not to the degree we hoped.
We tried it but quit.
We've seen a big change in cognitive & academics, but my child is still hyper.
Tried for 2 years, but are now stopping.
Tried it for 1 month, but stopped due to extreme negative reaction to changes.
Vitamin B-6 (13)Tried it but stopped (3).
It helped, but we quit because it was too hard to get my child to take it.
Did it for a year, then we stopped.
Tried it but quit because child would not take without fight.
We've seen a big change in cognitive & academics, but my child is still hyper.
I only give when hyper.
Tried it for one year but quit because we saw no change.
Dimethyl glycine DMG (10)Focuses better so can learn better.
Tried it but stopped.
No apparent effect.
Tried it but quit because child would not take without fight
We've seen a big change in cognitive & academics, but my child is still hyper.
Secretin (11)Tried for 3 months (2)
Tried it - no effect
Tried - no effect.
Had 2 injections in 2000, but stopped.
One infusion only as part of study at OHSU.
Two trials only.
Was involved in OHSU study.
Melatonin (10)

Used to help with sleep. (2)
Give to help with season change.
Used for 5 years, but quit because we found out it delays puberty.

Multi-vitamin (5)Been giving it to my child for 5 years.
Been giving to my child since infancy.
Super Nu-thera (3)Tried it but stopped.
Mannatech dietary supplement (2)Takes for immune system
Paxil (2)We have been trying for about 9 months and it seems to show improvement.
Risperdal (2)For ADHD and has helped control level of frustration.
This has helped enormously. "Hears" us better and is able to control tantrums.
Chelation (1)On this regime for heavy metal poisoning.
Homeopathic (1)Trial and error - still working on it.
Pepcid (1)For reflux problem
Reglan (1)For reflux problem
Robinul (1)For reflux problem
Flonase (1)For nasal discharge
Topamax (1)Give for seizures
Tegretol (1)Give for seizures
Ditropan (1)For bladder control.
DPRIV enzyme (1)Takes with meals and we have seen no diarrhea and no increase in stimming & screeching.
Zyrtec (1)Takes for allergies.

Other treatments listed with no comments: I give my child no treatments (9), Cod Liver Oil (3), Iron (2), Protein Supplement (2), Probiotics (2), Magnesium (2), Calcium (2), Zinc (2), Colostrum (2), Zinc (1), V-IG (1), IV-glutathiomine (1), Amino Acids (1), Yeast Free (1), Acidopholys (1), Taurine (1), Guanfacine (generic Tenex) (1), and Trace Minerals (1)

( ) = number of parents who gave similar response

 

TABLE 1t - (Parent Responses)
Cohort #1 - Students who began study in 1998
Treatments or Services Provided by Parents
during the 2002/03 School Year (N=31)
Treatment ReportedComments (not all parents gave comments)
Multi-vitamin (11)Since age of 2.
Since age of 4.
Started 3 years ago.
Took vitamins for a while, but saw no improvement and quit.
Since 6 months of age.
Give it to my child when we can afford.
Casein-Free Diet (9)

Tried for 7 months - quit because no change.
Just started this past month.
Helps with overweight problem, but not much effect on autism.
Tried it but stopped.

Vitamin B-6 (7)

Tried it but quit. (2)|
Tried for 6 months, but quit because we and doctor thought is wasn't helping.
Tried it and quit, because she refused to take it.

Gluten-Free Diet (6)

Tried for 9 months - quit because no change.
Helps with overweight problem, but not much effect on autism
Tried it but quit

Dimethyl glycine DMG (5)Tried it but quit. (2)
Tried it and quit, because she refused to take it.
Secretin (5)

Had 2 injections - saw no change.
Tried it, but quit.
One infusion only (OHSU study).
Moved from cream to injections 6 months ago.

No treatments (5)No comments given.
Melatonin (3)

Tried it, but quit.
Use it occasionally - my child sleeps much better.
Tried it - no marked change.

Risperdone (2)Started 3 years ago - in the process of reassessing use
Risperdol (1) Stopped taking in June 2003, but medication was highly successful.
Benafiber (1)My child tends to eat a lot of dirt and rocks.
Ditropan (1) For potty training
Chemet (1) Used it a couple of years ago until his mercury levels dropped to normal.
Paxil (1)No comment given.
DMPS/DMSA (1) No comment given.
Lo Carb Diet (1) No comment given.
Cod Liver Oil (1)No comment given.
Magnesium (1)No comment given.
Zinc (1)No comment given.
Super Nu-thera (1)No comment given.
Concerta (1)No comment given.


( ) = number of parents who gave similar response


FEEDBACK FROM PARENTS OF COHORT #2
At the end of the 2001/2002 and 2002/2003 school years, parents of Cohort 2 were sent surveys to give them the opportunity to provide input on their child and their child's program. For Cohort #2 (parents of students who began study in 2001), approximately 60% returned their surveys during the summers of 2002 and 2003. Their responses can be found in Tables 2a to 2k below.

Changes in Skills and Behaviors
 Each year parents were asked to report on any changes in their child's skills and behaviors. Table 2a shows the percentage of parents who answered that their child's skills or behaviors decreased, stayed the same, or increased during each school year. In the majority of areas listed below, parents overwhelmingly thought their childrens' skills or behaviors had increased each school year.

TABLE 2a (Parent Responses)
Cohort #2 - Students who began study in 2001
CHANGES IN SKILLS OR BEHAVIORS
Question Asked: Please let us know whether these skills or behaviors have decreased, stayed the same, or increased for your child during the school year:
2001/2002
School Year (N = 33)
2002/2003
School Year (N=31)
Skill or Behavior
Decreased
Stayed
the
Same
Increased
Decreased
Stayed
the
Same
Increased
Using language or other means to communicate
0%
15%
85%
4%
7%
89%
Using spontaneous communication to request foods, toys, or activities
0%
12%
88%
4%
7%
89%
Labeling items and pictures in response to questions
0%
39%
61%
0%
33%
67%
Understanding and responding to directions
0%
24%
76%
0%
4%
96%
Imitation of other children and adults during play
0%
27%
73%
0%
33%
67%
Playing with toys in ways that are appropriate to his/her age
0%
27%
73%
4%
29%
67%
Play with other children
0%
36%
64%
0%
44%
56%
Engagement in imaginative or pretend play
0%
28%
72%
0%
41%
59%
Self-care and independence in areas such as eating, dressing, and toileting
0%
61%
39%
0%
30%
70%
Appropriate behavior
3%
36%
61%
4%
31%
65%


Description of Changes in Skills or Behaviors
Parents were asked to describe any changes they had seen in their child's skills or behaviors during the 2001/02 and 2002/03 school years. All of their responses can be found in Tables 2b and 2c below:
TABLE 2b (Parent Responses)
Cohort #2 - Students who began study in 2001
DESCRIPTION OF CHANGES IN SKILLS OR BEHAVIORS
2001/02 School Year (N=33)
Question Asked: Please describe any other changes in skills or behaviors you have seen in your child this past school year:

Comments regarding communication/language:
More talking. (5)
More involved in conversation with adults and children (2)
Follows directions better. (2)
My child's ability to understand has increased. (2)
Language and comprehension has increased dramatically.
My child's speech has improved.
Learning to express feelings verbally.
Increase in receptive communication skills.
Ability to verbally request items to play with or eat.
Tries to address people by name now.
Asks for things.
Uses PECS & some limited words to communicate.
He requests better now than last year.
My child's vocabulary has increased.
Responds to "no" better.
Echoing phrases.

Comments regarding social interaction or play:
More eye contact. (4)
Tolerates close contact with others better.
More social, although my child's social anxiety takes over at times.
More social with peers and acquaintances.
He's less frustrated with us on home.
More social.
Much better at tolerating new people and places.
Adapts more quickly to new places and people.
Plays with lots more toys.
Very social now.
Notices adults more in our home and wants attention from them.
Walks hand and hand with me without pulling away.

Comments regarding inappropriate/appropriate behaviors and emotions:
Has intense tantrums. (3)
Less head banging.
I have seen an increase in self-stimulating behaviors.
Fewer temper tantrums.
Doesn't like being told to wait.
Happier.
More active.
Has developed a sense of humor.

Comments regarding independence:
More independent. (2)
Progress in toileting training. (2)
Uses computer by self.
Succeeded at toilet training.

Comments regarding learning/ improvement/academics:
My child is better able to attend to activities. (2)
My child has learned many new skills.
All around improvement.
My child has improved intensely.
There is no question that my child has improved since attending school.
Enjoys going to school.
Enjoys attending school & no longer cries when I leave.
My child is much more aware of his environment.
She's interested in things .

Comments regarding motor skills:
Greater physical-motor skills

( ) = number of parents who gave similar response / No parentheses = 1 parent gave this comment



TABLE 2c (Parent Responses)
Cohort #2 - Students who began study in 2001
DESCRIPTION OF CHANGES IN SKILLS OR BEHAVIORS
2002/03 School Year (N=33)
Question Asked: Please describe any other changes in skills or behaviors you have seen in your child this past school year:

Comments regarding communication/language:
Increase in receptive language. (2)
Improvement in communication with the introduction to visual strips.
Language just continues to improve all the time.
Starting to use words to communicate wants.
Use of language has really increased.
Communicating wants regarding toys and activities better.
Great increase in vocabulary.
Repeating one word after we say it (not consistent).
Asserts personality.
Tolerates and enjoys going to new places and meeting new people.
He is excited about going to school.

Comments regarding social interaction or play:
He plays Nintendo & computer with his brother.
He is more affectionate and loving with his family and wants to constantly be around us.
She is more responsive to strangers.
She acknowledges other children more.
Seeking out certain people for needs and plyaing.
More eye contact.
Plays with siblings more.
Overcoming intense fear of animals.
Says he loves parents on a regular unprompted basis.

Comments regarding inappropriate/appropriate behaviors and emotions:
Fewer tantrums. (2)
We stopped her medication and she has gone from very agressive behavior back to being withdrawn.
More confidence as well as feelings for others.
Knows more meanings liike sad and mad and uses them appropriately.
Is now being able to feel what another party might be feeelng in a situation.
Child's behavior has become more challenging at home.
Has frequent/intense trantrums and increased stimming.
When hurt or upset, takes my hand and leads me to rocking chair so I can comfort him by rocking & singing to him.
Negative aggressive behaviors are still present, depending on stress level.
He had increased self abuse and aggression, but we treated it with ABA & medication and improvements have been seen.

Comments regarding independence:
My child is now toleit trained. (2)
More independent and helpful.

Comments and diet/food:
Eating more variety of foods.
More curious about food, but still eats poorly.
My child is now self-feeding and helping self to things in refrigerator

Comments regarding learning/ improvement/academics:
Reading has increased.

Comments regarding motor skills:
Can skoot along on trike.
Better coordination.
Jumping off of couch, chairs, and stairs.

General comments:
Has improved in every area possible and now most people do not even know my child has autism.


( ) = number of parents who gave similar response / No parentheses = 1 parent gave this comment



Parent Involvement
At the end of each school year, parents of students in Cohort #2 were asked to rate their involvement level and their satisfaction with their involvement level in their child's early childhood or school-age program. Table 2d shows the mean rating for all parents was 7.45 in 2001/02 school year and 7.51 in the 2002/03 school year (10 = intensely involved........1 = not involved at all) when rating their involvement level. When rating how satisfied they were with their level of involvement, the mean rating for parents was 7.88 in the 2001/02 school year and 6.81 in the 2002/03 school year (10 = extremely satisfied........1 = not at all satisfied).

TABLE 2d - (Parent Responses)
Cohort #2 - Students who began study in 2001
INVOLVEMENT LEVEL IN CHILD'S EARLY CHILDHOOD
OR SCHOOL-AGE PROGRAM
Question Asked
Mean
2001/02
School Year
(N=33)
Mean
2002/03
School Year (N=31)
Please rate your level of involvement with your child's early childhood or school-age program.
(Scale: 10 = intensely involved / 1 = not involved at all)
7.45
7.51
Please rate how satisfied you are with your involvement with your child's early childhood or school-age program.
(Scale: 10 = extremely satisfied / 1 = not at all satisfied)
7.88
6.81

Services Received

Satisfaction with Services Received
At the end of the 2001/2002 and 2002/2003 school years, parents of students in Cohort #2 were asked whether or not they were satisfied with the amount of services their own child received and the quality of services their child received. Table 2e shows that 78% of the parents in the 2001/2002 school year and 55% of the parents in the 2002/2003 school year either agreed or strongly agreed that they were satisfied with the amount of services their child received.

When asked about their satisfaction with the quality of their child's services, 85% of the parents in 2001/2002 school year and 78% of the parents in the 2002/2003 school year agreed or strongly agreed that they were satisfied with the quality of services their child received.

TABLE 2e - (Parent Responses)
Cohort #2 - Students who began study in 2001
AMOUNT AND QUALITY OF SERVICES
Statement
Agreement Level
2001/2002 School Year
(N = 33)

Agreement Level
2002/3003 School Year
(N = 31)

 
Strongly
Disagree
Disagree
Agree
Strongly
Agree
Strongly
Disagree
Disagree
Agree
Strongly
Agree
I am satisfied with the amount of services my child received
9%
12%
42%
36%
19%
26%
33%
22%
I am satisfied with the quality of services my child received
0%
15%
46%
39%
11%
11%
30%
48%


What Parents Liked about the Services Their Children Received
Parents where asked what they liked about the services their children received during the 2001/2002 and 2002/2003 school years. Tables 2f and 2g show that most of the parents liked their child's services, because they were impressed with the quality of the service providers. Common responses about the teaching staff included they "loved their child," provided "individualized and personalized programs," and were "knowledgeable," "dedicated," and "caring."

TABLE 2f - (Parent Responses)
Cohort #2 - Students who began study in 2001
WHAT PARENTS LIKED ABOUT THEIR CHILD'S SERVICES 2001/2002 School Year (N=33)
Question Asked: What do you like about the services your child received?

Individual and personalized programs for my child. (4)
Teacher and staff very knowledgeable and dedicated. (4)
Teaching by people who know and love my child. (2)
Home visits. (2)
Intense autism program.
Intensity of our home program.
Involvement of his teachers.
The services provided by both a private preschool and Easter Seals were excellent.
The staff makes my child feel very special.
The quality of services is sometimes better than what is offered privately.
The teachers are kind & considerate.
They make my child feel more normal.
The teacher is always thinking of new ways to help my child.
It has helped my child make huge gains in speech & understanding.
Staff really cares - They are encouraging, complimentary, & so helpful to all our family.
The teaching staff gives my child teaching and skills that I can't give.
One-to-one in autism class.
My child's communication is getting better thanks to school!
Teachers are always available, enthusiastic, empathetic, and never give up on our child.
Supportive staff.
I like the teachers.
Flexibility of staff.
Staff is Fantastic.
I have a large say in the curriculum we use with my child.
Parents are involved with program.
Everything.
Consistency.
Communication with caseworker.
Daily notebooks that let me know what my child was doing at school.
Teachers have helped tremendously with social skills.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment


Table 2g - (Parent Responses)
Cohort #2 - Students who began study in 2001
WHAT PARENTS LIKED ABOUT THIER CHILD'S SERVICES
2002/2003 School Year (N = 31)

Question Asked: What do you like about the services your child received?

The staff is very caring/kind/concerned. (5)
The staff are competent/qualified/knowledgeable. (4)
The staff are very good/great. (2).
The staff are dependable/dedicated. (2)
The staff and I work well together. (2)
Communication is good.
The staff really knows my child.
There have been improvements in my child's functional abilities.
I like the structure, peer interaction, and weekly progress reports.
The staff is totally concerned about progress.
Personal attention from teacher.
The services have been beneficial to our entire family.
Nothing, except that they were free.
The preschool is very good for her social skills.
Quality of services.
His teachers are wonderful.
The staff adjusts my child's program to meet needs.
Excellent STAR curriculum.
Use of PECS.
Good ratio of teachers to students.
Staff really cares.
Extended day with one to one attention.
The social skills class and integrative preschool was a good combination.
I child did very well in EI class and seemed to enjoy going to preschool.
All.
Child to teacher ratio is good.
Staff get down on a personal basis with each child and family.
His goals were met and when he could exceed goals, teachers helped with excess progress.
Federal government should help fund services during state budget crisis.
The services are outstanding.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment

 



How Services Could be Improved
In addition to asking the parents what they liked about the services their child received, parents were also asked to give input on how services could be improved. Tables 2h and 2i show the suggestions they gave for the 2001/2002 and 2002/2003 school years. Common improvements parents thought were needed included, "more hours in the classroom," "year round program," "more one to one," "more staff training," more fudning," and "more parent training,."
TABLE 2h - (Parent Responses)
Cohort #2 - Students who began study in 2001
HOW PARENTS THOUGHT SERVICES COULD BE IMPROVED
2001/2002 SCHOOL YEAR (N =33)
Questions Asked: How could services be improved?

More hours in the classroom. (5)
Program should be year round. (3)
More one to one with the kids. (2)
More parent training. (2)
No suggestions - I am satisfied with services. (3)
No improvement needed. (2)
Less harried teachers.
More one to one speech therapy.
Need better communication from teacher.
More work with peers as a group.
The services provided by the regional program were of inferior quality.
The staff from the regional program spent almost all their hours on paperwork, meetings, & evaluations.
More frequent services.
More meetings with parents.
Pay at least 1/2 of the services my child gets. I now pay 75%.
More support during breaks.
More structure in the classroom.
State funded/free preschool for siblings of same family.
More staff.
Better follow-through by staff.
More services.
Less time in a parent/toddler class and more class time in a structured directed environment.
More home visits.
Information (articles) available to give to parents.
O.T. time
More parent support.
Too many inservice days.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment


TABLE 2i - (Parent Responses)
Cohort #2 - Students who began study in 2001
HOW PARENTS THOUGHT SERVICES COULD BE IMPROVED
School Year 2002/2003
Question Asked: How could services be improved?
More hours/more time. (10)
More funding. (4)
More training for staff. (3)
Don't know/can't think of anything/nothing (3)
Better communication.
Faster pick-up on behavior.
Listen to parents and respect their wishes.
Better placement at kindergarten.
Kindergarten staff are completely unprepared for his special needs.
Staff needs to follow the program that is working.
Students should be grouped more closely by abilities.
It would be beneficial to have an observation area for parents to watch children without them knowing.
More stability in student and teacher population.
Best practice is a minimum of 25 hours per week, but my child only get 15 hours.

( ) = Number of parents who gave similar response / No parentheses = 1 parent gave this comment


Treatments or Services provided by parents
In order to determine if other factors were affecting their child's educational progress, parents of students in Cohort #2 were asked to tell us about any treatments their children were receiving or had received during each school year. Tables 2j and 2k show their responses for the 2001/2002 school year. Common treatments listed by parents included casein free diets, gluten-free diets, vitamins, and melatonin.
TABLE 2j - (Parent Responses)
Cohort #2 - Students who began study in 2001
Treatments or Services Provided by Parents
during the 2001/02 School Year (N=33)
Treatment ReportedComments (not all parents gave comments)
Casein-Free
Diet (11)		Been on it for 2 months
Been on it for 7 months.
Small Change
When off diet, undesirable behaviors increase dramatically.
Eye contact worsens, child is in own world when not on diet.
Stimming increases when my child is not on diet.
Tried it for 4 months and then stopped.
Tried it a couple of years ago and then stopped
Tried it for 3 months, then quit and noticed no difference.
Tried it for 2 months a last year, but quit.
Dimethyl glycine- DMG (10) Tried it, but quit because no noticeable improvement. (2)
Tried for 10 months, but quit.
Just started trying it.
Tried it for 2 months a last year, but quit.
Vitamin B-6 (10)Tried Kirkman, but quit because there was no improvement. (2)
Tried but quit because it upset my child's stomach.
Tried it but quit - it disrupted sleep.
Tried it but quit - caused diarrhea
Tried it for 2 months last year, but quit.
If we miss this, we really see behavior variations.
Gluten-Free (9)

Been on it for 2 months.
Been on it for 7 months.
Small change.
When off diet, undesirable behaviors increase dramatically.
Eye contact worsens, child is in own world when not on diet.
Stimming increases when my child is not on diet.
Tried it for 5 months and then stopped.
Tried it a couple of years ago and then stopped.
Tried it for 3 months, then quit and noticed no difference.
Tried it for 2 months a last year, but quit.
My child is not on a gluten-free diet, instead eats only gluten products.

Multi-vitamin (7)Chewable kind.
Multi-vitamin with fluoride and iron
Since infancy.
Melatonin (7) My child likes the chewable kind.
Tried it but quit, because it was ineffective for sleep.
Use for sleep.
Use as a p.r.n.
Tried but stopped - made my child awake.
Tried but stopped - my child sleeps better after we quit it.
Super Nu-Thera (6)Tried but quit because it disrupted sleep.
Been using for one month.
Tried it for 3 months, but quit because it made no difference.
Secretin (2)Good results.
Qi Gong Massage (1)Last 7 months my child is participating in study - we have seen fairly dramatic positive effects. It is the most important intervention we have tried.
Massage (1)Ongoing
Chelation (1)Tried for 1 year, but did not like day after effect
Ketoconazole (1)Been on it for 4 months.
Nystatin (1)Been on it for 4 months.
Probiotics (1)Been on it for 4 months.
Risperidol (1)Much calmer now
Other treatments listed with no comments:
I give my child no treatments (10), Cod Liver Oil (4), Zinc (2), Salicylate free diet (1), Phenol free diet (1), Soy Free Diet (1), Mercury Detox (1), Acetyl L-Carnitine (1), Amino Support (1), Ambrotose (1), Mediclear (1), Re L Glutathione (lotion) (1), Pro bio gold (1), Epsom Salt Cream (1), Enzymes (2), DDPIV (1), Yeast control (1), Colostrom gold (1), Biocidin (1), Nystatin (1), S. Boulardii (1), Milk Thistle (1), Nutricidal (1), Glutathione (1), Formula Soy (1), Flaxseed Oil (1), Amino Full (1), Calcium (1), MSM (1), Liver cleanse tea (1), Homeopattarics (1), Everyday Companion (1), Folirinse (1), Vitamin C (2)B-Complex #1 (1), Ribo 5 Phosphate (1), DMPS (1), Co-Enzyme Q-10 (1)

( ) = number of parents who gave similar response


TABLE 2k - (Parent Responses)
Cohort #2 - Students who began study in 2001
Treatments or Services Provided by Parents
during the 2002/03 School Year (N=27)
Casein-Free Diet (12)Tried it but stopped (5)
Tried it, but stopped, because we saw no change. (2)
Sleeps Better
Major improvements in all areas: physical & mental.
No more stomach aches.
Gluten Free Diet (11)Tried it, but stopped. (5)
Stopped - saw no effect (3)
Feeding problems - no change
My child does not have allergies, so I don't use diets.
We noticed immediate improvement in behavior: better cognitive abilities, sleep, and understanding and less tantrums and head banging.
Multi-vitamin (10)

Provide because I am concerned about limited food intake

Melatonin (10)Sleeps 7 -8 hours a niught
Don't use anymore - instead use other meds
Tried it, but stopped.
We use as need to keep on regular 10 p.m. to 6 a.m. sleep.
Tried it, but it didn't work.
Helped my child sleep well.
We use occasionally for sleeping.
Dimethylglcine (DMG) (10)Tried it, but stopped. (2)
Vitamin B-6 (7)Diarreha
Secretin - (3)

Agitation
Some improvement - but why?

Risperdal (3)Placed on due to behavior issues
Ritalin (2) Tried, but stopped (2)
Zirtect (1) Food Allergies
Benedryl (1) Helps with sleeping
Iniprunine (1) Placed on due to behavior issues
Adderal (1) Tried, but did not do well at all.
L-Carnosine (1) We started this and within 2 weeks he went from not words to never shutting up. It was like a miracle. Social skills improved right away too.
B K. Injections HMP (1)Growth hormone
Carn-Aware (1) Noticeable incrase in eye contact & more menatl awareness.
GLA Plus (1) Firmer bowel movements, more mentally aware, more eye contact.
Soy Plus (1) Main source of food.
Other treatment listed with no comments: I give my child not treatments (6), Heavy metal chelation (2), Cod liver oil (2), Corn soy diet (1), SCD diet (1) , no sugar diet (1) , Prozac (1) , Chinese massage (1) Homeopathics (1) , Herbal liver cleanse (1) , Carnetine (1) ,Acidophilus (1) , Paxil, (1) Zinc (1) , Super-NuThera (1) , Amino acids (1) , enzymes (1) , clatheration (1) , Omega 3 (1) , Lethacin (1) .


( ) = number of parents who gave similar response



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