Navigating an Autism Diagnosis
April 05, 2021
April 05, 2021
Though many books have attempted to create one, the role of a parent does not come with an instruction manual. Every child is different, so how is it possible to know what the next correct step is for each one?
At Hopebridge, we cannot write a one-size-fits-all guide, but we are here to help families navigate some of the often unexpected parts of the journey, such as pursuing a diagnosis for autism spectrum disorder (ASD).
Are you a parent considering an autism assessment for your child? Or have you already conducted an evaluation and are unsure of the next steps? We connected with Hopebridge licensed clinical psychologist, Dr. Candice N. Claiborne, who shared her advice for parents on what to expect and how to prepare for the various steps around seeking a diagnosis.
Jump to Dr. Claiborne’s steps and recommendations to navigate an autism diagnosis for your child:
For some parents, deciding to arrange a diagnostic assessment for autism is the easy part. For others, taking this initial step can be difficult.
If there are developmental concerns or a pediatrician recommended an evaluation, but a parent is still on the fence, it is important to remember that having more information is valuable. Evaluation results are intended to provide parents with guidance on what interventions – if any – may be necessary for a child’s development.
Ultimately, these evaluations help us determine whether autism is the best explanation for the child’s patterns of symptoms that are being reported. Autism is a social disability that impacts a child’s ability to communicate and interact with others. Often times, the symptoms we see from autism overlap with those of other psychological disorders. For instance, the child might have some difficulties with eye contact that overlap with ADHD, or they may experience social challenges that also account for anxiety.
Even if the results point to an autism diagnosis, the treatments can look very different, depending on the child’s level of need. On the contrary, if it turns out a child just has a speech delay, it would be more helpful to get them early support to get their language to develop further, rather than allowing them more time to “catch up.” Either way, receiving a diagnosis (or learning it is not ASD) is just the first step. It opens more doors, but caregivers get to decide how to open those doors. The diagnosis provides the key.
For those unsure how to begin this journey, it is a good idea to inform oneself on autism from the start. The Hopebridge website shares helpful information that answers “what is autism?” and includes the signs of autism. Parents can read even more about ASD and its symptoms on our blog. Talking to others touched by autism can be beneficial as well, though it is important to remember that each individual experiences autism differently, so it may not be the best indicator.
Parents whose children fall within the 16- to 30-month age range can also use the widely used, at-home screening for autism, known as the Modified Checklist for Autism in Toddlers (M-CHAT). This questionnaire covers the possible early signs of autism and is recognized by pediatricians and other health professionals to identify children who should receive a more thorough assessment.
In any case, if parents have concerns for their child that could be related to autism or another developmental delay, they should discuss them with the pediatrician to seek a referral to be tested for autism. Parents can also fill out the form on the Hopebridge website to arrange an appointment.
When arranging the assessment, parents should avoid scheduling appointments around their child’s naptime, particularly for toddlers. If the child is irritable due to sleepiness, then parents may feel like the clinician did not get an accurate representation of the child’s behavior.
When approaching autism testing, there are a few things parents should keep in mind. To prepare, they can ask themselves:
Whether it’s communicating, interacting with peers, managing their own personal needs or regulating their emotional responses, parents should have an idea of where they’d like to see their child before going into the evaluation. The spectrum is so broad that treatment will be different for each individual, so keeping these development-related questions in mind not only influences the evaluation, but also gives parents a sense of what they are working toward post-diagnosis.
As mentioned, it is also useful for parents to familiarize themselves with the symptoms of autism in advance of the appointment. Parents may also find it valuable to become familiar with some of the common autism-related terms, such as “repetitive behaviors,” “elopement” and “echolalia,” as they may arise during the various pieces of the assessments and can be practical when describing certain symptoms and behaviors to the clinician.
To best prepare for the appointment, parents should review and fill out all questionnaires and documents that are sent in advance (we’ll share a brief snapshot of these in the next section).
It is also important for parents to know that diagnosing autism is not an exact science. Clinicians take into account what the parent has reported over time, as well as their own observations of the child in the moment. Because the evaluation time is limited, there are certain things the parent may find concerning that the clinician may not have the chance to see during the assessment. Because of this, it is extremely beneficial for parents to prepare themselves with examples of these behaviors. I love examples and videos! If you witness a behavior at home and can capture it on video, bring it to the appointment so the clinician can view it, as well.
So, you have the appointment scheduled for the autism testing … what’s next?
There are several pieces that we combine for the overall evaluation. This includes pre-appointment questionnaires and documentation, along with in-person interviews and standardized observations based on age.
The day of the appointment, parents should anticipate an assessment time anywhere from 90 minutes to 2 hours interacting with the clinician.
Here is a brief rundown what assessments could be included as part of testing for autism:
In order to meet the ASD diagnosis, a child has to show a certain amount of symptoms in two specific areas, including social and communication skills, as well as the repetitive patterns of behaviors. If they were found to meet that criteria, we would assign a level of severity at the time the child is seen for the evaluation. This level ranges from 1 to 3 and helps determine the need for support.
There are several different possibilities for children and families once the evaluation has been conducted. These include but are not limited to:
First and foremost, kudos to you for acknowledging your child’s needs! You were aware your child needed support or was not developing as you anticipated. Be proud of your child, but also proud that you sought to learn whether there is a better way to understand your child’s learning style right now since the tools that have been presented to them are not producing the same results you would like to see.
If the results of the testing do not point to an autism diagnosis, do not get discouraged. This does not dismiss the concerns you have for your child. In these cases, the evaluation helps us point your family toward a different direction to better explain the behaviors. Do not give up hope; it’s just an additional step in the process.
If your child does receive an autism diagnosis, remain present-focused. Do not get on the train to the future or jump ahead 10 years as to what this means for your child. Instead, think about the skills you would like to see them develop right now, which is most important. Do you want to try to get them to make one-word requests, speak in sentences and have conversations or have more appropriate behaviors in social interactions?
Rather than thinking about your child having a “disability,” think about the behaviors you’d like to see them grow. Consider the skills you would like to teach your child that are not coming naturally. This will give you hope in seeing your child learn.
Staying in the moment is also important because as your child grows and learns differently, they will be assessed again in the future. Their severity level and interventions can be modified and changed as they continue to get older. This is just a snapshot of where they are in this moment of time. It’s not a movie; we can’t tell you how it will end.
Lastly, do not feel like this is a one-stop appointment. You can continue to collaborate with your clinician after the evaluation. If you have questions or wish to follow up, use us as resources, even after you have tried out services. I encourage you to keep these doors open as you consider your next steps.
Are you ready to take the next step? Let our Hopebridge Care and Benefits Coordinators and our autism testing team members, like Dr. Claiborne, serve as your guide. We are here to help as you search for answers for your child to lead them to greater opportunities in life. Contact us to get an appointment for a autism test on the books now.
*Informed consent was obtained from the participants in this article. This information should not be captured and reused without express permission from Hopebridge, LLC.
June 22, 2022
What to Expect During an ABA Evaluation
September 20, 2022
Is Your Child Ready for School? 5 Signs to Consider
February 02, 2018
Common Misconceptions About Autism
February 10, 2021
5 Skill-Building Valentine’s Day Activities for Kids with Autism