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Utah Autism Initiative Project ~ Helping you through the evaluation process of your child

Helping You Through the Evaluation Process of Your Child

With a Possible Autism Spectrum Disorder

A Utah Autism Initiative Project ~ www.health.utah.gov

The purpose of this document is to give you, the parent or caregiver, important information regarding evaluation of your child for a possible Autism Spectrum Disorder (ASD). The Utah Autism Initiative (UAI) hopes this information will help you understand the process of evaluating a loved one, which in turn may help you find appropriate services and therapy for your child.

The members of UAI have pulled together critical information from the perspective of parents, health care providers, and educators so that you can better understand what each area offers and how each contributes to diagnosis of an ASD.

Each of the professionals involved is committed to the best outcome for your child and your family. Sometimes this results in an evaluation that focuses on a particular specialty or area of knowledge. Also, privacy laws and governmental rules can sometimes delay or prevent the sharing of information. You may need to authorize the release of your health information to help in this process.

Diagnosis vs. Classification

It is important for parents to understand that the criteria used to determine a health diagnosis of ASD are different from the criteria used to determine an education classification of ASD. An education classification is used only if your child is eligible for special education services in the school setting. This means that a child may have an ASD diagnosis from a healthcare provider but may not be eligible to receive an education classification.

(1) The Role of Parents in the Evaluation Process

If you have concerns about your child’s progress, such as a speech delay or problems with social interaction, and believe he or she may be showing signs of an ASD, it is important to seek professional help. Talk with your child’s primary healthcare provider, mental health professional, education team, and other knowledgeable professionals to determine the best path for your family.

As a parent, you may feel overwhelmed by all the information and suggestions that are being offered. Consider involving a family member, friend or someone who has experience with ASD in the evaluation process. We encourage you to invite them to come with you to your child’s appointments to act as an advocate as you navigate through this process.

Keep Track of Milestones

It is important to keep track of your child’s developmental milestones, such as when he or she first walked, as well as dates and ages of significant illnesses, delays in development and changes in behavior. This information will help the professionals to better understand your child. Information on developmental milestones can be found at Learn the Signs, Act Early: http://health.utah.gov/utahactearly/

Positive Attitude

It’s easy to get frustrated during this important process. If you find yourself getting discouraged, try to focus on the fact that the specialists are dedicated to helping your family find and use available resources. Being positive and considerate can help make the process easier.

You can also get help through the Utah Parent Center, an organization dedicated to helping parents of children with disabilities. Please visit their website for free information, consultants, and training at http://www.utahparentcenter.org/

(2) The Role of Health Care Providers in the Evaluation Process

When you have concerns about your child’s development, it is important to discuss these concerns with your primary healthcare provider (PCP). A PCP is usually the child’s pediatrician, but may be a family physician or other advanced practice medical provider. When scheduling an appointment, be specific about your concerns, in case the PCP wants to schedule a longer appointment. Bring your child with you to the appointment.

Your PCP may ask you questions about your child’s development, or have you fill out a questionnaire to screen for specific developmental delays. This screening alone cannot diagnose your child with an ASD. If the examination and the screening indicate that your child has developmental delays that could be consistent with an ASD, you will likely be referred to other healthcare providers, such as a psychiatrist, psychologist, or speech- language pathologist, to complete the evaluation process.

Remember that the requirements and steps needed to make a diagnosis may vary for each health professional or center that provides evaluations for an ASD. Healthcare professionals may include mental health professionals, speech-language pathologists, audiologists, and physical and occupational therapists. Mental health providers can provide support for the child and his/her family members as well as play a key role in the evaluation process. Many mental health providers have specific training for working with children with ASDs.

Any of your healthcare professionals may suggest that you contact your child’s teacher/principal to discuss your child’s education process.

(3) The Role of Education in the Evaluation

Process

When you have concerns about your child’s educational progress, it is important to report your concerns to your child’s teacher and/or principal.

You may wonder why the school needs to conduct a comprehensive evaluation even though your child has already been evaluated by his or her medical provider. By law, and because it is best practice, the school must determine the impact of the disability on the child’s education.

An evaluation will be conducted within 45 school days of receiving parental consent for the evaluation. The consent will identify the specific evaluations that will be administered, and may include: IQ testing, academic, adaptive and social pragmatic testing, and an ASD checklist. Medical information and a developmental history will be requested for the evaluation process. The evaluation must identify the student’s education needs. These needs may not necessarily be related to a specific medical diagnosis.

Other Information

UAI previously developed a Precautionary Document which may also help you as you consider the different services and therapies for your child:

Autism Council of Utah: http:/autismcouncilofutah.org/

Utah Medical Home Portal:  http://www.medicalhomeportal.org

Utah Parent Center:   http://www.utahparentcenter.org/

Utah Special Education Rules:

www.schools.utah.gov/sars/laws/rules.aspx

The Utah Autism Initiative committee (UAI) is a state inter-agency advisory panel of experts in the field of ASD-related research and treatment. UAI is formed solely to benefit the citizens of Utah affected by or having an interest in ASD. The UAI maintains no commercial interests whatsoever in any party outside the membership of the UAI.