Autism Phenome Project Experience
We are no longer recruiting new subjects at this time.
We know that you and your family will give careful thought in making your decision whether to participate in the Autism Phenome Project (APP). To help you with that decision, we’ve provided written descriptions of the APP visits, testing sessions , and procedures. In addition, the Frequently Asked Questions may provide you with more information. Finally, walk through the visits by viewing our virtual videos that feature children and families participating in most aspects of the APP study.
During the first year of this longitudinal study, you and your child will make approximately 4-6 visits to the MIND Institute or its affiliated facilities. Visits for long-distance families may be scheduled in two, 2-day visits. We try to schedule the visits and procedures at your convenience, given the availability of specialized facilities and staff. The testing or procedures during each visit follow a general pattern, but the sequence may vary in order to accommodate your family’s needs. Also, the duration given for each procedure is an average estimate only. The actual time required will vary according to the needs of your child.
For general and enrollment information about the APP study:
(916) 703-0452 (office)
Your family will be welcomed to the MIND Institute by the APP Family Support Liaison who will take you through the consent process and answer any of your questions. (Upon enrolling in the study and prior to this visit, you will have received an information packet about the study, along with questionnaires to complete and bring with you to the first visit.) You will also receive additional resource material during the first visit and a final packet of questionnaires to take home to complete and return.
We will take your child’s vital measurements (including weight, height, and head circumference, along with a 3D photo of your child’s head), followed by the behavioral testing session.
You and your child have been invited to participate in a research study to understand the different types of autism based on behavior and physiology. By separating out different types of autism we hope to find the cause(s) and better treatments for each type. As part of the study, we will sample all the main behaviors and developmental domains involved in the core behavioral presentation of autism. The combination of testing data and parent completed questionnaires will provide a thorough sampling of behaviors in the three clinical domains affected by autism: social reciprocity, communication and language, and restricted and repetitive behavioral repertoires. In addition, we will sample the key developmental areas specifically affected in autism: imitation, emotional responsivity, joint attention, symbolic play, language, nonverbal cognition, sensory and responsivity.
What to expect from the Behavioral testing?
When you first arrive at the MIND Institute we will review the visit schedule and go over the consent forms. After consenting to participate, your child will begin with the behavior testing. For all children participating in the study, developmental level and cognitive skills will be assessed by a trained examiner using the:
Mullen Scales of Early Learning
This is an assessment of your child’s overall developmental functioning in the areas of visual reception, fine motor skills, and language. The assessment usually last about 45 minutes.
If your child’s overall development is beyond the level of a typical 2-year old, he or she will also be given the:
Stanford Binet Fifth Edition (SB-5)
The Stanford Binet 5 is a standard test of cognitive ability (i.e., how your child problem solves with or without language.) We will be conducting an abbreviated battery. It lasts for 15 minutes.
If you child’s level of spoken language is beyond the level of a typical 2-year old, he or she will be given the:
Expressive One-Word Picture Vocabulary Test-2000 Edition (EOWPVT)
This task provides information about language and verbal expression. Your child will be asked to name some simple pictures. This takes 15 minutes.
If your child’s level of understanding language is beyond the level of a typical 2 ½ year old, he or she will be given the:
The Peabody Picture Vocabulary Test-III (PPVT)
This task looks at vocabulary skills. Your child will be asked to identify some pictures, which takes about 15 minutes.
For all children in the study, we will examine imitation skills and which hand they use to complete tasks:
The Imitation Sequences look at your child’s performance while he or she imitates sounds and movement. Your child will be asked to copy words and gestures demonstrated by the examiner. The task takes about 10 minutes.
Hand Preference Task
During the Hand Preference Task your child will be asked to do a few things, for example, tossing a ball. We’ll be observing to see which hand he or she prefers to use. This task only takes a minute.
If your child has an Autism Spectrum Disorder, he or she will also be given the:
Autism Diagnostic Observation Scale
Unless your child has been administered the ADOS in a recent (i.e., 2 months) study at the MIND Institute, the ADOS will be given. This is a diagnostic tool to assess the core characteristics of autism. It takes about 45 minutes.
Communication and Symbolic Behavior Scales Developmental Profile (CSBS)
The CSBS examines verbal and nonverbal communication and play skills. The task consists of a 20 minute play period with the examiner, you, and your child.
How long will the Behavioral testing last?
As the tests are chosen by the level of your child’s abilities in many developmental domains and because young children are different in how they perform with adults in testing sessions, the length of testing is variable. In our experience it has lasted from 1 ½ - 3 hours. However, the examiner and team is sensitive to children’s needs and breaks in testing are provided and planned according to parent’s desires.
What to expect from the parent Questionnaires?
The following list of questionnaires are provided as part of the behavioral portion of the APP study and are critical to providing the detailed information about your child and family. You will be asked to complete some questionnaires during your appointments for the behavioral testing at the MIND Institute and given time to do so. If your child has accompanied you to the visit, we will provide child care for you to be able to work on these forms. We will also provide some forms for you to take home and complete and return. Parisa Shoja or Jacqueline Nguyen will assist you in the completion of these forms:
Vineland-II Adaptive Behavior Scales (VABS)
The Vineland Adaptive Behavior Scale assesses adaptive behavior in the areas of social skills, communication skills, daily living skills, and motor skills.. This questionnaire takes 30-45 minutes to complete.
Early Development Questionnaire (EDQ)
The Early Development Questionnaire provides important information about your child’s early development and takes about 15 minutes to complete.
Short Sensory Profile (SSP)
The Short Sensory Profile asks questions about your child’s sensitivity to different sensory experiences. It takes 10 minutes to complete.
Repetitive Behavior Scale-R (RBS-R)
This scale provides information about repetitive behaviors. It takes 10 minutes to complete.
Children’s Behavior Questionnaire (CBQ)
The Children’s Behavior Questionnaire asks questions about your child’s temperament and behavior. It takes about 30 minutes to complete.
Social Responsiveness Scale (Parent Report (SRS)
This scale asks questions about the child's social behavior, communication, and repetitive behavior. A parent will complete the Social Responsiveness Scale for your child in the study as well as for each biological sibling. Each questionnaire takes about 20 minutes to complete.
Social Reciprocity Scale – Adult Version (SRS)
This version of the SRS asks similar questions about social behavior, communication, and repetitive behavior. Each parent will complete the Social Reciprocity Scale about the other parent. The questionnaire takes about 20 minutes to complete.
Child Behavior Checklist (CBCL)
The CBCL is a checklist of behavior difficulties present in your child. It takes about 30 minutes to complete.
Children’s Sleep Habits Questionnaire
The Children’s Sleep Habits questionnaire has questions about common sleep habits in children. This form takes about 30 minutes to complete.
CSBS Questionnaire (CSBS DP Caregivers Questionnaire)
The questions pertain to how your child communicates and plays and how he/she expresses him- or herself using actions, gestures, sounds, or words. This form requires about 15 minutes to complete.
MacArthur-Bates CDI Words and Sentences
This questionnaire collects information about your child’s language development. The first part asks you to report words that your child uses. The second part examines early grammar and his/her understanding of word forms and multi-word utterances. You will also be asked to give written examples of your child’s three longest sentences.
For information about questionnaires, please contact:
- Deana Li
Environmental Exposure Questionnaire
To learn about environmental factors and their relationship to autism, APP, in conjunction with the MIND Institute's CHARGE (Childhood Autism Risks from Genetics and the Environment) study, will conduct an extensive phone interview about the child, parents, and child's environment.
What happens during this session?
Your child will be encouraged to play in a pretend MRI scanner with one of the researchers. This session will also be an opportunity for you to speak with the researchers and ask any questions that you might have.
How long is this session and where does it take place?
This session is about an hour, and takes place at the Imaging Research Center, 2 blocks from the MIND Institute.
For questions about the mock MRI, please contact:
Dr. Christine Nordahl
How long is this session and where does it take place?
The blood draw takes less than 30 minutes and usually takes place at the MIND Institute. In some instances, another lab near the MIND Institute may be used.
What is the MRI about?
You and your child have been invited to participate in a research study to understand the different types of autism based on physiology and behavior. By separating out different types of autism we hope to find the cause(s) and better treatments for each type. As part of the study, we ask that you help us get a detailed picture of your child's brain using Magnetic Resonance Imaging (MRI). This is not the kind of MRI scan that you would get for a medical reason, but a radiologist will routinely read these scans. Also, if you so indicate, a copy of the radiologist’s report may be sent to your physician(s). In the rare case that there were unusual or puzzling results with your child's scan, the APP medical staff will contact you to discuss the findings and make recommendations for follow-up. This description will help you understand the MRI process.
How does MRI work?
MRI is very safe. It is a completely non-invasive procedure. This means that no needles are used and no chemicals or radiation (as is the case with X-rays) are used to create images. Instead it uses a powerful magnet and radio frequencies to create images of tissue in your body. Your child will be gently placed into a device known as an MRI scanner, which is a long tube surrounded by the magnet. The scanner sends and receives signals from the cells in your child's body. A computer interprets the signals into a set of images that you can see on a computer monitor and then stores the images in the computer for viewing or analysis. The most important factor in getting a good picture is for your child to remain still. Just like when a photograph is taken, any movement can cause the image to be blurry. One way to make sure that your child remains still is to get the image while your child is asleep. We will be working closely with you to make a plan that will work best for you and your child. One idea is to try to have your child fall asleep in the car on the way to the imaging center. If this does not work, we will have a bed set up in the scanner room so that you can go through a night time routine upon arrival until your child falls asleep.
What to expect
You and your child will make two visits to the UC Davis Imaging Research Center (IRC). For directions to the IRC, please click here. The reason for the first visit is to help you and your child get to know the scanning environment as well as the researchers you will be working with. At the first visit, your child will be encouraged to play in a pretend MRI scanner with one of the researchers. This will also be an opportunity for you to speak with the researchers and ask any questions that you might have. Although the goal is to scan your child while s/he is sleeping, we want you and your child to have the chance to learn about the environment prior to the actual scan. Here is a picture of the pretend or 'mock' scanner.
The real MRI scanner makes some loud knocking or ringing noises when the pictures are being taken. To protect your child's ears from the noise of the scanner, we use soft foam earplugs and a set of sound reducing headphones on the night of the scan. In order to help your child get used to wearing the earplugs and headphones while sleeping, we will give you a kit that contains earplugs and headphones to practice with at home. We will give you specific instructions during your first visit to the IRC. In addition, we will give you a CD of the actual sounds that the scanner will make and ask that you play the CD in the background during the day while your child is awake and at night to help get him/her used to the sounds. You can also play it in the car on the way over to the night time appointment.
To get a better idea of the MRI sounds, here are some examples for you to hear.
Sound 1 (15 seconds)
Sound 2 (8 minutes)
Sound 3 (6 minutes)
Sound 4 (7 minutes)
Sound 5 (4 minutes)
The real scan will happen during your second visit to the IRC. This visit will take place in the evening, around the time of your child’s usual bedtime. We will ask you to keep your child awake and active during the day so that s/he is sleepy during the scanning session. As mentioned above, one possibility is for your child to fall asleep in the car on the way to the IRC. Another possibility is for you to go through your usual bedtime routine with your child at the IRC. We will ask you to bring any favorite blankets or toys that might help your child fall asleep (see below).
Here are pictures of the real MRI scanner (left) and how the room and scanner will look when you come in for your night time visit (right). The added beds on either side of the MRI bed are in place for your child’s safety and comfort. To help your child fall asleep we have also covered the scanner and added blankets and stuffed animals.
When your child falls asleep, s/he will be adjusted into the scanner bed’s head coil. A head coil is used to focus the magnetic field on the right area (the brain) and will also support your child’s head. Pillows, blankets, or towels will be used to comfortably hold your child’s body in position.
During the scan, you and one of the researchers will remain in the scanning room with your child (providing that you have nothing that stops you from being in the scanning room – for example, a pacemaker or other implanted medical device). The scan will be stopped immediately and the scanning session will be ended if your child wakes up during the scan and cannot be very quickly soothed back to sleep. Once scanning begins it will take about 30 minutes to take all of the pictures.
Can anyone have an MRI?
No, some people cannot have an MRI and should not even be in the same room as an MRI scanner. An MRI machine contains a magnet with a very powerful magnetic force that is never turned off. So no one should enter the scanner room without being carefully screened first. Persons who have a heart pacemaker or any kind of electronic or metal implant in their body should not be in the MRI environment. Some examples of objects that would make an MRI unsafe are:
an implanted medication device, such as an insulin pump
metal clips or pins, or other metal objects in the head
any metal or shrapnel wounds where objects or fragments are lodged around the eye or spinal cord
any metal joint replacements or heart valve replacements
We will provide MRI screening forms for you and your child to complete and to bring with you to the first MRI visit.
Also, your child (and the parent who comes into the room with the child), will not be allowed to wear or carry anything metallic in the scanner room. We ask that you dress your child in comfortable pajamas that do not have any zippers or snaps. ALL objects such as watches, jewelry, coins, cell phones, keys, or anything else containing metal, must be left in the room outside the scanner. Objects containing magnetic data strips, such as credit cards, will have the data erased by the magnet, so they should be left outside as well. Lockers are provided for safe storage of all such materials.
What should I bring with my child to the MRI?
We would like for you to bring anything that will help your child fall asleep on the evening of the scan (e.g., teddy bear or favorite blanket). Please use the checklist below as you think through what to pack and how to best prepare your child.
We will need you to bring these items (e.g., child’s pajamas, teddy bear) on a visit to the Imaging Center. We will be screening the items during the mock MRI to ensure that they will be safe for your child to have/wear in the scanning room. However, if you do not remember to bring the items to the mock MRI, we will screen items at the time of the scan and have you complete a screening form for you and your child.
What to bring to my child’s MRI
Bed/Night Time Items:
Your child’s favorite pajamas (without zippers and snaps)
Your child’s favorite blanket (if applicable).
Your child’s favorite stuffed animal or doll (if applicable).
Your child’s favorite book(s) or toy(s).
Your child’s favorite music CD – if used at nighttime.
Your child’s favorite cup/bottle/pacifier
Any other items that your child uses as a part of his/her regular nighttime routine
*will be returned to you at the end of the visit
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
Bed/Night time Items (MRI visit):
Dress your child in diaper/pull up/underwear and pajamas.
Pack items that were pre-scanned (blanket, stuffed animal, books, and cup/bottle/pacifier)
Will your child fall asleep in the car? Consider bringing stroller to transport sleeping child to and from the car.
For questions about the MRI, please contact:
Dr. Christine Nordahl