Autism Phenome Project Experience
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 M.I.N.D. Institute or its affiliated facilities. 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:
APP Study Coordinator
For APP family support questions:
Family Support Liaison
Your family will be welcomed to the M.I.N.D. 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.) You will also receive additional resource material during the first visit.
You will also be given a 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 M.I.N.D. Institute we will review the visit schedule and go over the consent forms. You will also be given some questionnaires to fill out. 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 developmental progress in the areas of visual reception, fine motor skills, and language. The assessment can take 30-40 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 intelligence and 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 10 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 10 minutes.
For all children in the study, we will examine imitation skills and which hand they use to complete tasks:
The Imitation Sequences will be looking at your child’s performance while imitating sounds and movement. You can help by thinking of some examples of familiar sounds and actions. Your child will be asked to imitate some of those familiar acts and also some novel ones. 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 M.I.N.D. 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 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.
For information about behavioral testing, please contact:
Dr. Cynthia Zierhut
Clinical Psychologist, Psy #19810
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 on your child’s behavior. You will be asked to complete these questionnaires during your appointments for the behavioral testing at the M.I.N.D. 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. In rare occasions, we will provide these forms for you to take home and complete and return. Carolyn McCormick will assist you in the completion of these forms:
Vineland-II Adaptive Behavior Scales (VABS)
The Vineland Adaptive Behavior Scale is used for people of all ages. It looks at adaptive development in areas like play, personal skills, motor skills, and communication. Please read the directions carefully. This questionnaire takes 30-45 minutes.
Early Development Questionnaire (EDQ)
The Early Development Questionnaire provides important information about your child’s early development and takes about 15 minutes
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 nature and behavior. It takes about 30 minutes to complete.
Social Responsiveness Scale (Parent Report (SRS)
This scale asks questions about social behavior, communication, and repetitive behavior to help understand social ability. 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)
This checklist consists of behavior problems in young children. 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 15 minutes to complete.
CSBS Questionnaire (CSBS DP Caregivers Questionnaire)
The questions pertain to how your child communicates and plays. The questions have to do with how your child expresses him- or herself using actions, gestures, sounds, or words. This form requires about 15 minutes to complete.
For information about questionnaires, please contact:
Psychophysiological (Sensory) Testing
What is the Psychophysiological testing session about?
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. The purpose of the psychophysiological session, usually done during the second visit, is to measure your child’s response to various situations. We will measure your child’s heart rate and the amount of sweat secreted from his or her skin. Specifically, we are interested in different patterns of response.
What to expect from the Psychophysiological testing session
When you arrive at the M.I.N.D. Institute for this session, we will ask you to remove your child’s shoes. Removing the shoes allows your child to acclimate to any temperature change. Three electrodes that measure sweat will be placed on your child’s right foot after we wipe that area with an alcohol swab to ensure that they adhere to the skin. The electrodes are just small stickers about the size of a quarter, and peel off like a band-aid. The two electrodes that measure heart rate will be placed on your child’s back (wearing a loose fitting shirt makes this placement easier and quicker). We will then ask that you carry your child to our lab down the hall. We will seek your input on how to make this process easier for your child.
Once inside the lab we will seat your child in a specialized chair. Your child will be facing a computer monitor watching a video of Teletubbies. We will then attach wires to the electrodes, which allows us to record your child’s heart rate and sweat response. You will sit behind your child a few feet away and an examiner will sit across the table from your child. Sitting still and attending to the activity at hand are important for good data collection; the examiner will help your child with that. Please redirect your child’s attention if he or she turns attention to you.
After watching Teletubbies for a few minutes, your child will then view a series of objects on the computer screen for several minutes. We will then present your child with a series of sensory experiences: smell, sound, sight, and touch. During the session, your child will be given various toys to play with and will interact with the experimenter. After that, your child will meet and play with someone new. Your child will then watch the video for a few more minutes before we remove the electrodes.
How long will the Psychophysiological testing session last?
Typically, the entire session lasts about 40-50 minutes. However, young children are different in how they respond to the various activities in the testing session, therefore the length of testing is variable. The examiner and team is sensitive to children’s needs and breaks in testing are provided and testing is discontinued according to parent’s desires.
For information about psychophysiological testing, please contact:
Dr. Cynthia Zierhut
Clinical Psychologist, Psy #19810
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 M.I.N.D. Institute.
For questions about the mock MRI, please contact:
Dr. Christine Nordahl
Why is the purpose of the blood draw?
A small amount of blood may be drawn from the child and biological parents in order to perform genetic analyses and study the immune system.
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 M.I.N.D. Institute. In some instances, another lab near the M.I.N.D. Institute may be used.
For information about the blood draw, please contact:
Family Support Liaison
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, so a radiologist will not routinely read these scans since they are for research purposes only. In the rare case that there were unusual or puzzling results with your child's scan, we would ask a radiologist to read them. Only then, and, if needed, would we suggest that you to schedule a clinical diagnostic scan. 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 your first visit to the Imaging Center. We will not be doing the MRI on this visit but we will be screening the items to ensure that they will be safe for your child to have/wear in the scanning room. However, if you do not remember the items 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 (*bring to first visit at M.I.N.D.):
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 nightime.
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
What is the ERP about?
This part of the Autism Phenome Project will look at how children's brains will respond to sounds of varying loudness. Sometimes children who have been diagnosed with autism don't seem to respond very much to sounds and at other times they may appear very sensitive to noise. We are hoping to learn more about how the brains of children with autism take in and process sounds from their environment. This description will help you understand the ERP process, and what to expect from this visit.
How does ERP work?
ERP is the electrical response made by the brain when it processes information. ERPs can be measured in a safe, completely non-invasive way using electroencephalography (EEG), a procedure that measures electrical activity of the brain through the skull and scalp. To do this, we use a stretchy, snug cap that has sensors attached to it. In the center of each sensor, we put a small amount of saline-based (non-irritating) gel to ensure that we get a good electrical signal from your child's brain at each location around the head. There is no danger or pain at all involved with recording electrical activity from the brain in this way. We will be measuring the very subtle electrical current coming from your child's scalp, that is always present, but no electricity will be going to your child.
What to expect
You and your child will make one visit to the UC Davis Center for Mind and Brain (CMB). When you arrive, you will be greeted by an experienced member of our team, who will take you through each part of the testing. The process has been set up to be as family and child friendly as possible for you and your child. We'll first get acquainted, talk about what videos to use during the capping process and during the ERP data collection, and decide what snacks, drinks, and other “goodies” we want on hand during the session.
Step 1—Fitting the ERP cap
- While the cap is being fitted, your child will be able to play with toys or watch a video.
- The cap is very stretchy and soft on the inside. It looks something like a cloth bathing cap with very thin lifesavers on it, which are called sensors. The sensors are sewn onto the cap, and when the cap is fitted on the head they rest gently against the scalp.
- The cap is held in place with 2 chinstraps and an elastic belt, which is fitted around the chest with velcro.
- While your child continues to play and/or watch a video, we will place additional sensors on the cheeks and forehead to get a recording of exactly where the sensor sites are on your child’s head. We do this by touching a long instrument to each sensor.
- The last step in fitting the cap is moving the hair under each sensor to the side with an alcohol solution. Then we squirt saline gel in each of the sensors and use soft, long q-tips to make sure the gel is touching your child’s scalp. This, too, will be done as “discreetly” as possible, and while your child is still playing or watching a video.
- Fitting the cap will take about 25-30 minutes.
Step 2—Preparing for collecting ERP
- After the cap is fitted you and your child will walk across the hall to our sound proof testing room.
- This room is dimly lit and the video we chose will be playing when your child enters.
- We have a comfortable “La-Z-Boy” type chair in the booth, and your child will sit on your lap throughout the session.
- We will spend about 10-15 minutes making sure that we are getting good contact from the sensors. During that time your child will be watching a video on the screen directly in front of him or her, or else playing with a toy with one of our experimenters, and may be having a snack or drink. We will use a soft, long q-tip in some of the sensor sites to adjust the contact with the scalp.
Step 3—ERP recording
- When we're ready to begin, we will place some lightweight headphones on your child. Through the headphones, we will play 4 different tones repeated every few seconds. These sounds are at varying sound levels, but none of them are extremely loud.
- During the time that the sounds play, (about 40 minutes), we will try to engage your child in an activity that is fun, like watching a video or playing with a quiet toy.
- It is during this time that we are actually recording brainwaves, although your child will not have to make any response to the sounds.
- It is important that your child remain somewhat still and quiet during this time so that we are able to record good information. If your child moves too much, the information we get will be hard to read. If your child needs to shift positions, starts to speak, or needs a break for some other reason, we can pause recording and begin again when he or she is ready.
- An assistant will always be in the room with you.
- We will be videotaping this session so we can relate activity in the recording room, such as talking and moving, to changes in the brain wave recording quality. An experimenter will also watch the session using a video monitor in the next room.
After the Recording
- When the recording phase is over, the cap will be removed by the experimenter and we will clean the gel out of your child's hair.
- We have a “beauty shop” sink, just for rinsing your child's hair in our lab after the testing session, if you wish.
- Your child will be given a small thank-you gift for helping us and receive photographs of their visit to the ERP lab, to take home.
What should I bring with my child to the ERP session?Toys/Videos:
We have a large amount of toys, books, and videos in our ERP lab to distract and entertain your child. We do ask, however, that if your child has very specific likes with regards to toys, books, etc., that you bring them with you on the day of the ERP session. (Anything you think would help keep them calm and entertained during the procedure described above.) If your child has a favorite video that he or she really loves to watch (especially if there is only one that (s)he will watch), please bring a copy of it with you to the ERP session. We can play either DVD or VHS videos.
We also have many snacks on hand, including: goldfish crackers, fruit-chew snacks, pretzels, mini marshmallows, apple juice and drinking water. If you child has special dietary restrictions, or especially likes a snack or drink not listed above, we ask that you bring that along with you as well.
For questions about the ERP procedure, please contact:
Dr. Susan Rivera
Dept. of Psychology/M.I.N.D. Institute/Center for Mind and Brain