"Intuition will tell the thinking mind where to look next." - Jonas Salk
Parents are the ultimate experts on their children. They have an innate instinct around their child's needs, and are their best advocates and teachers.
All children have different strengths, as well as their own unique developmental trajectories. Beyond the typical worries around milestones and skills, some parents may find themselves with larger questions about their child's development.
Often when this is the case, parents start searching for answers, but without knowing exactly what they’re looking for the process can seem overwhelming and isolating, so let’s break it down by answering two common questions: "What are the signs?" and "Where do I start?"
What are the signs?
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines ASD as:
- Persistent deficits in social communication and social interaction across multiple contexts
- Restricted, repetitive patterns of behavior, interests, or activities
These symptoms must be present in the early developmental period, and be a cause of a clinically significant impairment in occupational, social, and/ or other important areas of current functioning. Finally, these differences are not better explained by a global developmental delay or intellectual disability.
For a full read of the diagnostic criteria for ASD, click here.
Additionally, there are hallmark signs that parents may notice, that aren't explicitly called out in the diagnostic descriptions. These include limited ability to:
Make eye contact
Respond to the sound of a familiar voice or his or her name
Visually follow objects or gestures, known as joint attention
Use gestures to communicate, such as waving or pointing
Make noises to get your attention
Imitate facial expressions or gross motor movements
Play with other people or share interest and enjoyment
Notice or care if you hurt yourself or experience discomfort
For many parents, the first indicator is an inability to soothe by typical means, such as touch or swaddle. Others may notice a lack of language development or non-verbal exchange.
Where do I start?
For most families, the first conversation is with the pediatrician. During routine early checkups, your child's pediatrician will use standardized tools to screen your son or daughter for certain developmental touchstones that may be indicative of ASD. While some pediatricians may provide a diagnosis in their office, best practice is to have a full multi-disciplinary evaluation.
If your child is school-aged, talk with his or her educational team. Your child's campus may have a Response to Intervention (RTI) committee, which designs intervention and progress monitoring plans for students who demonstrate academic, behavioral or emotional needs. Another campus contact could be the Licensed Specialist in School Psychology (LSSP) or Educational Diagnostician.
From there, you may receive a myriad of referrals. These may include suggestions to see a neurologist, therapists (behavior, occupational, speech, academic) to either confirm this diagnosis or provide intervention. What can also ensue is in pursuing these referrals is an onslaught of logistical, emotional and financial challenges, but it is important to remember that you are not alone. It is important to ask questions along the way, sometimes these may be the same questions answered by each individual you work with, keep your steps and any new information documented for the next appointment, and seek help when you believe you need it.
This can be a very trying time for families, both emotionally and logistically. You may receive conflicting or confusing advice. Every recommendation may seem urgent. Here are a few tips I recommend:
Start with the basics: Ask professionals simple, direct questions such as “What do you see as the most emergent need/ intervention?” or “Where is the most important place for our family to start?” Start with one action step, be it seeking more evaluation or starting with a certain service provider. One step at a time!
Stay organized: Digital guru? Use Google Drive to store digital copies of your records. This allows you to reference them wherever you are (with the free Google Drive app), email them with ease, and print them when needed. Prefer paper? Buy a simple accordion folder to store doctor’s notes, referrals, resources, etc. Having everything in one place can prevent duplicate efforts and get your child services quicker.
Remember to practice self-care: You can’t pour from an empty cup! Whether its time alone, or time as a family, be sure to take time away from this process to do the things that replenish you!
How can we help?
In the coming months, please revisit our blog as we will be discussing various topics from the diagnosis to planning and how to advocate for and empower your child. Most importantly, how can you begin to ask the right questions so that your child receives the intervention they need to be successful in and outside of school.
If you have questions about your child's educational or developmental needs and feel that you would like to learn more or benefit from one-on-one support, we provide our potential clients phone consultations to learn more about our services and how we can help you personally.
Melissa Jones is one of our wonderful family advisers specializing in navigating the special education and disability diagnosis process. This includes seeking or understanding the results of academic, behavioral/emotional, or cognitive testing, engaging in the Individual Education Plan process within the school environment, and creating an informed, supportive and therapeutic support network for your child and family. Melissa has a strong passion for special education, specifically working with families and schools to create inclusive, holistic, and rigorous experiences for all learners. She believes that children with learning differences should be knowledgeable about their needs and learning styles, so that they can be their own best advocates! Read more about Melissa in her bio.
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