Navigating an Autism Diagnosis

Hopebridge Psychologists Share Tips for Families Considering Testing for Autism

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 has your child already received an evaluation and you are unsure of the next steps? We connected with our team of Hopebridge psychologists to get their advice for caregivers on what to expect and how to prepare for the various steps around seeking a diagnosis.

Jump to the steps and recommendations to navigate an autism diagnosis for your child:

• Where to Start to Find Out Whether My Child Has Autism
• How to Prepare My Child for Autism Testing
• What to Expect for the Diagnostic Evaluation for Autism
• What Happens After My Child is Tested for Autism
• Post-Evaluation Takeaways for Families

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Hopebridge Clinicians Answer: “My Child May Have Autism … Where Should I Start?”

For some parents, deciding to arrange a diagnostic evaluation 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 the child’s family 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 assessments 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.

Families 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 caregivers 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 evaluation, families should avoid scheduling appointments around their child’s naptime, particularly for toddlers. If the child is irritable due to sleepiness, then caregivers may feel like the clinician did not get an accurate representation of the child’s behavior.

How to Prepare for Autism Testing

When approaching autism testing, there are a few things families should keep in mind. To prepare, they can ask themselves:

• What developmental skills do you feel are not on par, or what skills do you want to be addressed?
• If your child was doing what you expected or wanted them to do, what would that look like?

Whether it’s communicating, interacting with peers, managing their own personal needs or regulating their emotional responses, caregivers 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 provided in advance (we’ll share a brief snapshot of these in the next section) on HB Portal, Hopebridge’s web platform where families can complete documents and access important patient information.

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.

What to Expect for the Diagnostic Evaluation for Autism

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 on the HB Portal, along with a virtual appointment for caregiver interviews and an appointment for clinical observations based on age, which may be conducted virtually or in person. 

Families should anticipate each appointment to run from 1 to 2 hours interacting with the clinician.

Here is a brief rundown what families can expect to be included as part of testing for autism:

1. Autism Diagnostic Evaluation Consent Form
   This informed consent form is reviewed via the patient portal in advance of the appointments. It provides consent for the diagnostic appointment and outlines how the finding will be communicated to the caregiver and release to the primary care physician.
   
2. Presentation of reports, school records, IEPs, videos, etc.
   Like the examples and videos discussed earlier, if caregivers have previous reports or school records that can impact the evaluation, it is helpful to upload them to the patient portal for the clinician to review, which will help them gather the full picture.
   
3. Caregiver interview
   Part of the assessment process includes a virtual parent interview, which is where we gather a general overview of medical and educational history before discussing symptoms specific to autism. It is important that the adult accompanying the child can act as an informant about the child’s history and current presentation. Even if the information is filled out ahead of time, the clinician may need to ask follow-up questions, so a parent or legal guardian must be present for the appointment. We’ll touch upon communication skills, social skills, patterns of repetitive behaviors, interests and/or sensory experiences that might intrude upon the child’s functioning. If there is information the parent does not feel comfortable sharing in the presence of the child, they can let the clinician or another member of the care team know in advance. There might be an opportunity to have a therapist play with the child for part of the parent interview, or if the parent wishes, they can write down their concerns or email more sensitive information.
   
4. Clinical observations
   Depending on the child’s age and comfortability, the clinician might work with the child individually. For instance, if the child speaks fluently in sentences and is of school age, the parent might stay in the waiting area for this portion, if it is an in-person appointment. If the child’s language is unclear or they have a lot of anxiety around the evaluation, the parent could be present in the room. Either way, the clinician will lead the activities, whether it is held in person or virtually. During this portion, we create the scenarios to try to get the child to communicate. We create different activities to facilitate interaction with the child. For example, we might put something out of reach to see how the child requests it. If we can’t get the child to respond, we might give the parent a directive, but in these cases, it is highly important caregivers remain consistent in saying the same things the clinician says.
   
5. Feedback session
   There will be a feedback session at the end of the second appointment. The diagnostician will use this time to share the symptoms, diagnosis, what level of need there is, and recommended next steps, such as ABA, speech or occupational therapy.

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 those 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.

Next Steps for Families After an Autism Test

There are several different possibilities for children and families once the evaluation has been conducted. These include but are not limited to:

• Applied Behavior Analysis: many times, an autism diagnosis will lead to recommendations for comprehensive interventions, such as applied behavior analysis (ABA therapy). ABA is the only evidence-based methodology proven to help children cope with challenges related to autism, and it is offered at Hopebridge. The developmentally centered approach capitalizes on learning by increasing opportunities and using the things an individual already enjoys to teach them new skills. It’s a structured, data-driven way to shape and mold actions and encourage effective communication by looking at what is reinforcing it. This includes breaking down activities into pieces in order to aim for smaller, daily objectives rather than broad sweeping goals.
• Additional treatment options: such as speech therapy to develop functional communication skills; feeding therapy for those who require support to meet proper nutrition or weight management; and occupational therapy, which can develop fine motor, adaptive life skills, sensory regulation and attention. All of these services are offered at Hopebridge.
• Educational services: such as IEPs and school preparation options, which are sometimes offered through centers like Hopebridge. This may also include direction on how to pursue small group instruction, paraprofessional support or other accommodations in instruction.
• Evaluations for other disorders not yet assessed: Whether this specific evaluation resulted in an autism diagnosis, the child may benefit from further support from a psychologist or developmental pediatrician, including evaluations for ADHD or other underlying mood disorders. Hopebridge can help facilitate referrals for these services.
• Emotional support for families: Autism testing can provide a lot of information at once. Families need time to process, breathe and give themselves grace. Just as the child is learning differently, so are parents. Sometimes doing things differently requires additional support from others. You don’t need to go at it alone.

Post-Evaluation Takeaways for Families

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. We encourage you to keep these doors open as you consider your next steps.

Get Help from Hopebridge

Are you ready to take the next step? Let our Hopebridge Care and Benefits Coordinators and get you set up and our psychologists serve as your guide through this diagnosis. 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.