Ages (0-3)
Autism is a developmental disorder causing impairments in communication and social interaction. Just because your child shows some of the signs, doesn’t necessarily mean she has autism. Not all children with autism show all of the signs and many children without autism manifest one or more of them. It is important if you have concerns to discuss them with a trusted pediatrician or family doctor.
Common Early Signs
- Not engaging in eye contact
- Not playing reciprocal baby games (peek-a-boo, where’s your _(insert body part here)__, having “conversations” back and forth with someone, etc.)
- As an infant, not babbling; not saying single words or phrases as a toddler
- Not bringing toys to you or pointing to things in his environment
- Not imitating others actions or words
- Not interested in others
- Doesn’t seek out new activities; prefers set routines and predictable play, and dislikes changes
- Strong interest in items, parts of items (like wheels on a car), or topics that may not interest others
- Engages in repetitive movements, sounds, and/or behaviors
- Exhibits being overly sensitive or under-sensitive to sounds, textures, lights, smells, and touch
Additional Resources for Early Signs and Symptoms:
Developmental Monitoring
If you have concerns about your child’s development, discuss them with a trusted pediatrician or family doctor. The doctor may ask questions about your child’s development. A developmental milestone chart can help you monitor your child’s progress. Developmental Monitoring is the first step in evaluating your child for Autism. More about Developmental Monitoring is covered in the section, Working With Professionals and Systems.
The Centers for Disease Control has created an in-depth checklist to assist parents with developmental monitoring. Starting at 2 months of age up through 5 years, this booklet offers lists of things your child should be able to do in a variety of areas such as social/emotional, language/communication, cognitive, and movement/physical development. It also includes ideas to help your child grow and develop in all of these areas.
Initiating a Plan of Action
If after doing some developmental monitoring you have concerns, it is time to get your child screened. Screening is the next step after monitoring and is typically done by your healthcare provider. We surveyed nearly 100 parents and asked them why they sought additional testing by their healthcare provider. The results can be found here, Common Reasons to Seek an Evaluation for Autism.
A screening tool parents can use to determine if further screening is recommended is the M-Chat (Modified Checklist for Autism in Toddlers ™). The M-CHAT is a series of 20 questions that can identify toddlers between 16 and 30 months of age who may benefit from a more thorough evaluation. It is designed to be taken by parents and the results can help you determine if your child should be evaluated by a professional. You can also take your results to be interpreted by your healthcare provider.
Just taking the screening test does not provide a diagnosis for your child. It will let you know if your child is developing on track or if you should have a specialist take a closer look. The screening tool can identify any areas of concern. Always consult your healthcare provider with any questions or concerns.
It may be appropriate for your child to receive early intervention. More information on early intervention can be found here.
More information on developmental screening can be found in the section, Working With Professionals and Systems. That section also includes information about possible therapies that can be helpful as a part of your plan of action.
Connecting with Peer Supports
Sometimes the professionals who work with your family focus mostly on the goods and services that you need or the deficits that your child needs to work on. Parents often need more than a diagnosis or information about a particular program or therapy. It can be helpful at this stage to find other parents who are going through, or who have gone through, what you are going through.
The Utah Parent Center is a parent-to-parent organization that provides information and training to parents whose children have disabilities, including autism. All of the Parent Center employees have children with disabilities and can help you connect to other parents.
The Family to Family Network (FtoFN), a project of the Utah Parent Center, is a statewide parent support network run by volunteers. It is designed to educate, strengthen, and support families of persons with disabilities, especially those who are on the waiting list or are in services with the Division of Services for People with Disabilities (DSPD). Network leaders are parents of individuals with special needs and link families to local resources, services, and disability-friendly events. Family to Family Network is the website for more information.
The Autism Council of Utah has information and resources for parents as well as a place to connect with others.
There are also a few Facebook Groups dedicated to parents of autistic children, Big MAKS, and Utah Autism Support. Both are closed groups so you will have to request permission to join. Both are great places to connect with other parents who can offer support, advice, ideas, and understanding.
There are more support groups found on the Utah Parent Center website. This list is not exhaustive but it is a good place to get started making connections with parents who understand your circumstances.
Education and Employment Early Intervention
Early Intervention (EI) is the term used to describe the services and supports that are available to babies and young children before the age of three who exhibit developmental delays and disabilities, as well as their families. It can include speech therapy, physical therapy, or other types of services depending on the needs of the child and family. Eligibility for early intervention services is based on an evaluation of your child’s skills and abilities. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make a request for an educational evaluation. Eligibility for early intervention services is based on an evaluation of your child’s skills and abilities.
Programs are available in every state and provide services for free or at a reduced cost for any child who is eligible.
TIP: An evaluation for receiving educational services is not the same as an evaluation for a diagnosis. You can request an education evaluation without a medical diagnosis or a referral from a healthcare professional. Education evaluations are provided free of charge by your regional program and will be used to determine if your child qualifies for services, such as speech therapy. It will not provide you with a diagnosis.
If you or another care provider is concerned about your child’s development, ask to be connected with your early intervention program to find out if your child can get services. If your care provider is not able to connect you, you can reach out yourself; a doctor’s referral is not necessary. Contact the early intervention location nearest you and say: “I have concerns about my child’s development and I would like to have my child evaluated to find out if he/she is eligible for early intervention services.” Click here to download the program list.
Source: CDC website, Act Early
A parent’s perspective on Early Intervention can be found in this article, Early Intervention.
Individualized Family Service Plan (IFSP)
An Individualized Family Service Plan (IFSP) is both a process you will go through and a document that is developed by yourself and a team of professionals to assist you and your child in their development. It is a written plan to outline the services, goals, and outcomes the family wants to achieve for themselves and their child. An IFSP is provided to families whose infant or toddler has been found eligible for early intervention services to help them develop to their fullest potential.
An IFSP begins with a meeting of the IFSP team. The team should include parents, a service coordinator, any professionals who have been involved in evaluations of assessments of your child, and those who will be providing the services. Other family members or a family advocate may also attend if requested by the family. Depending on the needs of your child, the team may also include a social worker, medical provider, therapist, or other specialist working with your child.
The team will discuss your child’s evaluation and assessment results as well as any family needs assessment results. The main focus of the meeting is on the desired outcomes for the child and family, the services that are needed to achieve the outcomes, and how the services and supports will be provided. The team will also discuss any concerns the family may have.
The plan builds from a foundation of the family’s strengths and resources. The family should think about what they want the child to learn, what help or support they need, other areas the family needs support, and what resources the family has that can help them to reach desired outcomes. Outcomes should be identified before discussing services and supports. Outcomes can be for your child but can also be for your family. For example, you may want your child to be able to transition between activities without having a meltdown so that your family can enjoy time together doing a variety of activities.
Early Intervention services are to be provided in as natural a setting as possible and parents may be trained by the professionals to work on objectives at home to achieve the desired outcomes.
There are a variety of services available in Early Intervention programs. These may include but are not limited to:
- Assistive technology
- Medical services
- Nursing services
- Nutrition services
- Occupational, speech, and/or physical therapy
- Mental health services
- Vision services
A child can utilize multiple services to help reach outcomes, as specified in the IFSP.
Individualized Family Service Plans (IFSP) must be reviewed regularly and progress should be checked and updated at least annually. As a team, you will assess your family’s situation and your child’s progress towards the desired outcomes. As needed, you can make changes to the IFSP in services, outcomes, and/or delivery of services. Remember that you are an important member of the IFSP team. Be prepared and willing to advocate for your child’s and your family’s needs.
Transition from Early Intervention to Special Education Services
At age three, your child will transition from Early Intervention to Special Education services. This can be a difficult period of time learning to navigate a new education system. The Utah Parent Center has created a series of training videos to help you through the process. These videos explain the process, describe how to create an initial Individualized Education Program (IEP), and share stories from families on their experiences. The videos are available in English and Spanish.
The Utah Parent Center also has developed a handbook to assist parents in the transition to Special Education/School services. The more you know, the better prepared you will be to support your child through the process of change.
Working with Professionals and Systems
Developmental Monitoring
Developmental Monitoring is the first step leading to an evaluation of Autism Spectrum Disorders. It includes tracking whether or not your child is reaching certain developmental milestones at the appropriate age. Parents and other caregivers can observe your child as he or she grows to note whether the typical developmental milestones in learning, playing, speaking, moving, and behaving are met. Parents can use a developmental checklist like this one from the CDC to help them know what to look for and what their child should be able to do.
If you notice that your child is not developing at the same rate as listed in the chart, you can speak to a trusted healthcare professional about your concerns.
Developmental Screening
Developmental screening takes a closer look at how your child is developing. It is a more formal process than monitoring and may include an assessment for your child. You may be asked to fill out a questionnaire about your child. Or your provider may choose to do both or something different.
Developmental screening is a part of healthcare well-child visits for most children and is recommended by the American Academy of Pediatrics (AAP) for all children at 9, 18, and 30 months. Screening for Autism Spectrum Disorders is recommended by the AAP at ages 18 months, and 24 months. If your child may be considered high risk for ASD (a sibling or parent has been diagnosed with ASD), or if symptoms are present at an earlier age, earlier screening may be recommended.
A common tool for screening is the M-Chat (Modified Checklist for Autism in Toddlers™). Your healthcare provider may also use the Ages and Stages Questionnaire or other screening tools. With any screening tool, your input as a parent is extremely valuable. The purpose of developmental screening is to determine if additional testing or evaluation is needed. It is also a way to identify children with significant developmental and behavioral challenges early so that interventions can be started.
Remember that screening is not a diagnosis. Even if the screening results indicate your child has ASD, it doesn’t mean automatically that they will be diagnosed as such. On the other hand, if the screening results do not show your child to have ASD but you still have concerns, it is ok to question the results. Screening tests do not identify every child with Autism. If you have concerns about your child’s development and your healthcare provider is not listening to your concerns, seek a second, or third opinion. You know your child best and you should trust your instincts and keep pushing until you get the answers you are seeking.
Additional Resources for Developmental Screening:
An Explanation of Monitoring and Screening from the CDC (in English and Spanish)
The M-Chat screening tool
Easter Seals “Make the First Five Count” Monitoring and Screening tool
Help Me Grow is a program that offers developmental screening, among other things
Click here to see what the official diagnosis tool, the Diagnostics and Statistical Manual V, says about autism.
Therapeutic Interventions
There is no cure for Autism Spectrum Disorders, but early treatment can help mitigate the challenges associated with it. The National Institute of Mental Health advises that there is no one best treatment for all cases of ASD, but medical and other professionals who specialize in autism can confer with diagnosed individuals and their families to determine an approach that works.
There are many therapeutic and educational interventions that can help people with ASD learn important social and practical skills, help with some of the symptoms, and reduce harmful behaviors. The most commonly used therapy is Applied Behavioral Analysis, or ABA, which focuses on improving certain types of behavior. It has been widely researched, has been shown to have positive results, and is often covered by insurance. ABA and other autism-specific therapies are discussed in more detail on the Age 3-5 page.
Some other forms of therapy that can contribute to treatment are:
- Occupational therapy (OT), which aims to improve a variety of skills needed for daily life, such as dressing, eating, and fine motor movements (e.g., writing or coloring)
- Sensory integration therapy, which can help someone with ASD deal with aversive sensory input (i.e. sights, sounds, touch)
- Therapy types that focus on verbal and nonverbal communication skills, such as speech therapy.
- Nutritional therapy is adding or taking away foods from the diet in order to have a positive impact on ASD. Studies have shown a link between the gut and the brain in those with autism and that what is eaten or avoided can have an effect on your child’s physical as well as mental well-being.
- Music therapy employs music to address the social, emotional, physical, and intellectual needs of individuals. It uses various activities to achieve its results, such as listening, drumming, moving, singing, and more.
- Complementary and Alternative Medicine (CAM) is using treatments outside the practice usually done by medical doctors. They can be used in place of, or along with, medical care. It can include such things as chiropractic care, massage therapy, herbology, acupuncture, aromatherapy, energy work, essential oils, chelation (a process to remove heavy metals from the body), cannabidiol (CBD) oil, hippotherapy (specialized horse-back riding), and more.
Source: https://www.psychologytoday.com/us/conditions/autism-spectrum-disorder, Seattle Children’s Hospital Autism 101 series