Autism Diagnosis and Assessments
If you suspect your child’s development or behavior is not in line with the accepted norms, based on their age, you should seriously consider contacting your doctor to schedule an assessment of your child. If a real problem of any type does exist, it is much better to obtain a medical diagnosis sooner rather than later.
Not every childhood development or behavior problem is related to an autism spectrum disorder (ASD), but the frequency of autism is so high these days that there’s a good chance your child’s issues might indicate the presence of an ASD.
In a recent article (Why Do I Need a Label?), we discussed the benefits of obtaining a medical diagnosis of autism in relation to acquiring a Family Services Medicaid Waiver (FS Waiver). Now, let’s take a closer look at the process of obtaining that diagnosis, as well as the specific type of assessment that is used to determine if a child has an ASD.
Diagnosis of Autism Needs to Include ADOS Assessment
If you receive from your doctor a medical diagnosis that your child does have an ASD, to qualify for the FS Waiver the testing process used to reach that conclusion needs to be based on an Autism Diagnostic Observation Schedule (ADOS) assessment. We’ve posted a 3-part series of Medicaid Waiver articles about the critical importance of obtaining an FS Waiver if your child has autism.
A lot of physicians and psychologists are not using a complete assessment to determine their medical diagnosis of autism. They might be using their own tools instead of the tools provided in each of the ADOS modules. They may also be using their own criteria to determine their diagnosis instead of using the diagnostic algorithm that accompanies each ADOS module. The scores computed by the ADOS algorithm are critical factors when you apply for the FS Waiver for your child, so be sure an ADOS assessment is used by your doctor during the diagnostic process.
If the medical diagnosis is for an adult and you’re not applying for a Medicaid Waiver, then using ADOS is not as important. In those cases, seeking a diagnosis from a psychologist or your local mental health center may be appropriate.
The Diagnostic Process
If you’re trying to diagnose a toddler or young child who you suspect has autism, the process will probably include multiple appointments of at least a couple of hours each. A follow-up appointment to then discuss the results of the testing could last about an hour.
One of the appointments will include a clinician asking you (the child’s parent) a series of questions about your observations of your child’s behaviors at home. If your child attends school, you may be asked questions about their behavior in that environment.
Additional articles about diagnosis and assessment are available in our blog: Diagnosis and Assessment
The Right Time to Seek a Medical Diagnosis
As stated earlier, it’s better to determine sooner rather than later whether or not your child is on the spectrum. Reliable test results can be obtained for children as young as one year old—sometimes even as early as nine months old.
Warning Signs to Look For
Some of the developmental or behavioral signs that indicate your toddler or young child may have a spectrum disorder, which you should bring to the attention of your doctor, are:
- Not babbling (infant)
- Difficulty communicating
- Limited eye contact
- Limited interest in or awareness of other people
- Toe-walking (using just toes to walk instead of using entire soles of feet)
- Unusual sensory processing to one extreme or the other:
- Sensitivity to touch, sound, light, or odor
- Need for lots of sensory input, such as spinning in circles, slamming into things, jumping up and down, crawling under blankets or furniture to create the physical pressure of a tight space
- Decreased fear of or reaction to pain, such as being physically hurt but not reacting to it
- Inability to recognize dangerous situations, such as continually running into the street when moving cars are present
- Not reacting to normal social interactions, such as not responding when you call the child’s name
For children who are in pre-school or kindergarten, warning signs can include:
- Difficulty sharing or interacting with other children
- Becoming very upset if things don’t happen the way they want or expect them to happen
- Lacking the ability to engage in imaginary play, such as pretending to be someone else (e.g., cowboy, princess, super hero)
- Becoming fixated on a toy in a way it is not made to be played with (e.g., spinning wheels of toy car instead of pushing it along the ground or setting toys in a line instead of playing with them)
- Losing or not gaining language skills
For more information about the signs of autism and childhood developmental milestones, read these articles:
- On our website: Know the Signs
- On our website: Developmental Milestones
- On the CDC website: Learn the Signs. Act Early.
Who Provides ADOS Assessments
If you think your child has developmental or behavioral issues and you want to test for an ASD, you can contact an ASI Ally to find out where you can obtain an ADOS assessment in your area.
Any of the Riley Children’s Health locations in Indiana should be able to provide an ADOS assessment. Many other facilities in Indiana also provide ADOS assessments, so you should not need to travel too far to obtain an assessment.
You should be able to schedule your appointment for an assessment within two to four months from when you contact a doctor or other healthcare facility that offers the ADOS assessment. The appointments for the assessment process will probably take a few hours, so you probably should set aside an entire morning or afternoon for the appointment. You may need to fill out some paperwork before the assessment is conducted.
After the testing is completed, your doctor should be able to provide the results within a couple of weeks.
Important Factors to Keep in Mind
A trained diagnostician needs to conduct an ADOS assessment. Many types of behavioral development assessments are available within the healthcare community, but having a medical diagnosis of autism based on an ADOS assessment is a key component of being approved for a Medicare Waiver.
An early assessment will lead to a better outcome. If you see any signs of unusual development or behavior during your child’s first few years, it is better to have an assessment right away instead of waiting until your child enters school. If your child is diagnosed with autism as a toddler, so much can be accomplished to help them be better prepared when they start at school.
An ASI Autism Ally can help you identify which diagnosticians accept which types of healthcare insurance. To find the ASI Ally that serves your area within Indiana, call us at 800-609-8449 and enter your ZIP Code when prompted. You’ll then be connected to the Autism Ally that serves your region.
More Info About ADOS
Here are a couple of articles that provided more information about ADOS:
- For a general overview of ADOS, read About the ADOS
- For details about the four ADOS assessment modules, read ADOS Product Description
Thanks to Susan Crowell, Autism Society of Indiana Rural Outreach Ally, for her contribution to this article. If you have any questions, please contact her at firstname.lastname@example.org or by calling 800-609-8449 x333.