Autism spectrum disorder, or ASD, is a developmental disorder that appears in early life and can cause challenges in behavior, social connection, and communication. This disorder used to be divided into separate diagnoses – like Asperger syndrome – depending on specific symptoms and severity. However, now clinicians diagnose them under one title: ASD.
Managing the Diagnosis Process
“When it comes to navigating the autism diagnosis journey, a crucial tip is to gather essential information about your child, [which] is invaluable during the diagnostic assessment,” says Brandy Hall, MSN, RN, coach and advocate for parents of high-needs children.
“Closely observe your child’s behaviors, actions, symptoms, expressions, and unique characteristics. By collecting this insightful data, you may significantly speed up and simplify the diagnostic process and give healthcare providers a comprehensive understanding of your child’s history.”
Recognizing Early Signs of Autism
ASD symptoms can start to appear as early as the age of nine months, according to the Centers for Disease Control (CDC), although recent studies suggest babies may start showing signs as early as five or six months. Autistic symptoms typically fall under one of these categories:
Social communication and interaction skills: Avoids eye contact, doesn’t respond to their name by nine months old, and doesn’t wave goodbye by 12 months old.
Restricted behaviors or interests: Lines up toys and gets upset when someone moves them; focuses only on one part of an object, like the wheels of a car.
Repetitive behaviors or interests: Repeats words and phrases, flaps hands, rocks body, or spins in circles.
Some other early signs of autism include:
Delayed language and learning
Slow to crawl, walk, run, etc.
Behavior that is hyperactive, impulsive
Difficulty paying attention
Unusual sleeping or eating habits
Excessive anxiety, stress, or worry
Less fear than appropriate in a risky situation
Unusual emotional reactions
ProTip: You can check your child’s developmental milestones through information provided by the CDC and the American Academy of Pediatrics.
Securing an Autism Diagnosis for Your Child
Autism can’t be diagnosed by a simple blood test or scan. According to the CDC, the steps to a formal ASD diagnosis include developmental monitoring, screening, and evaluations by a developmental pediatrician, child psychologist, speech-language pathologist, or other specialists.
Once a screening flags a potential issue, your child will have a more in-depth evaluation with a specialist. Developmental screenings are done at nine, 18, 24, 30, and 36 months of age. During an ASD evaluation, your child’s specialist might watch them take a structured test, ask you questions, or have you fill out questionnaires about your child’s behavior.
Working with healthcare professionals for a diagnosis of ASD can feel drawn out and frustrating, but it’s important to follow their recommendations to ensure their diagnosis is correct. Then, you can work together to make a treatment plan that works for your family.
Medical Expertise in Autism
If you think your child may have autism, it’s easy to feel nervous about a diagnosis. What if your provider is wrong? How do you know who to trust?
Trusting the Experts: Pediatricians and Child Psychologists
You know your child best, and a good healthcare provider relies on your impressions of their behavior. While you may be the expert on your child, their provider offers expertise on ASD.
To become a developmental-behavioral pediatrician, your specialist must complete at least seven years of university education as well as additional developmental-behavioral pediatrics training. Child psychologists must complete a bachelor’s degree, master’s degree, and a PhD in this specialty.
While no one can guarantee zero mistakes, you can trust that your specialists have been through many years of training and experience.
Consultation: Why Early Diagnosis Matters
When a child with ASD receives a diagnosis as early as possible, they can start to work with various therapies and get the services they need to develop. Getting a diagnosis and starting treatment can help your child make social connections more easily and cut down on the stress of having feelings they don’t know what to do with.
Seeking Second Opinions for Autism Diagnosis
You may not agree with your provider’s opinion, and you have the right to get that diagnosis double-checked. According to the Child Mind Institute, providers may miss a crucial diagnosis for many reasons.
Pediatricians may want to give your child a chance to develop. Autism cannot be diagnosed after one office visit, and your provider may want to hold off on a diagnosis until they’ve seen your child several times. ASD and other disorders like ADHD can prompt the same symptoms at times, and your provider may want to rule these out first.
All that said, if you want a second diagnosis, go for it. Don’t let anyone tell you you’re being a “problem parent.” You are advocating for your child, which is the best thing you can do for them.
Following an Autism Diagnosis
Once your child receives an autism diagnosis, you may be thinking, “What now?” Whatever you’re feeling, know that it’s normal and okay.
Emotional Response to Your Child’s Autism Diagnosis
Even if you were expecting it, an autism diagnosis can prompt strong emotions. “Consider holding back outward emotions, especially if they lean towards negativity about the diagnosis,” says Hall.
“Children are remarkably perceptive to our feelings. If they sense your sadness, disappointment, or any negative emotions associated with the diagnosis, they may internalize it. This is especially true for autistic children, who are often highly empathetic.” Studies have found that how parents adjust to an autism diagnosis can have a big impact on how well their child adjusts.
Pro Tip: When you talk about a new diagnosis with your child, be sure to mention the many strengths that can come with being on the autism spectrum, like creativity, focus, and the ability to learn and remember large amounts of detailed information.
Understanding Healthcare Coverage and Rights
“For healthcare coverage for your autistic child, it’s important to note that it can vary from state to state,” says Hall, who adds that each state may have different regulations and policies. “Some states have special provisions that automatically qualify children for Medicaid Services as soon as they receive an official diagnosis, but this isn’t the case in all states. The specifics can vary, and it’s worth investigating for your particular situation.”
Pro Tip: Your provider’s office, social workers, and the federal health insurance marketplace can offer help in decoding your insurance benefits, Hall says.
Finding the Right Doctors and Therapists
“When seeking the right provider for your child, extensive research is your best tool,” says Hall. “Online resources allow you to explore providers and read about others’ experiences.” Hall cautions not to base your choice solely on location. “In some cases, finding the right provider might require traveling, especially if it’s in your child’s best interest.”
You can ask your primary care provider for referrals to recommended specialists and therapy professionals. You can also visit an autism clinic, which often provides many specialties on-site. Lean on your community and ask for personal recommendations from parents who have already walked this road.
Setting up Regular Health Checks and Screenings
Regular health checks allow your child’s providers and therapists to monitor their progress and track changes in behavior or symptoms. Especially at first, setting up all these appointments can feel overwhelming. Hall suggests these strategies to help you keep the overwhelm at bay:
Streamline services: Explore service providers who can offer therapies at home or combine multiple therapies into a single visit.
School or daycare visits: Depending on your child’s age and situation, some providers can visit them at school, daycare, or preschool.
Double-up appointments: Consider scheduling multiple appointments in a single day to get them out of the way. However, remember that this might overwhelm both you and your child. It’s important to assess what works best for your family.
Support from others: Reach out to friends or family who can help with taking your child to therapies or provide support during sessions.
“Be open to exploring various options to find what works best for you and your child,” says Hall. “Each family’s situation is unique, and it’s essential to consider all factors involved.”
Understanding Healthcare for Children With Autism
Once your child’s provider establishes their ASD diagnosis, you can begin to get therapy referrals. These different providers can offer your child assistance in every area of development and help them reach their full potential.
Behavioral: helps your child understand their behaviors and what triggers them
Developmental: focuses on language and physical skills (speech, occupational, and physical therapies)
Educational: given in the classroom to provide consistency and visual learning opportunities
Social/relational: works to improve social and emotional bonding and skills
Medications: treats symptoms and behaviors, not the disorder itself
Psychological: helps your child cope with mental health issues like anxiety and depression
Complementary/alternative: include therapies like music, art, animal, herbal, and relaxation
Autism-Specific Healthcare Needs
Kids with autism can have different physical and mental health needs than their peers.
Importance of Mental Health Care in Autism
Often, children on the autism spectrum can develop mental health conditions like anxiety disorders, depression, or attention-deficit/hyperactivity disorder (ADHD). Once identified, treatment for these conditions can help children manage their behavior and reduce symptoms.
Autism and Physical Health: Knowing the Connection
Certain physical conditions are more common in children with ASD, including:
This list can look alarming, but once you know these risks, you and your child’s provider can address them and work to treat and prevent symptoms.
Special Dietary and Nutritional Considerations
Any child can be a picky eater, but children with ASD may have a few more needs in the mealtime arena. Because of texture preference and restricted interests, kids on the autism spectrum may only like a few types of food and have strong dislikes.
Though you may be tempted to try and get all the food groups eaten at every sitting, this may not be realistic for a child with autism. More important, says Hall, is your child’s transitions into and out of mealtime.
“Establishing routines and structure is essential because these children thrive on consistency,” Hall says. “Creating and sticking to routines is vital for their well-being. The key is working through transitions to make these routines more manageable.”
As far as nutrition goes, give them plenty of warning about what’s on the menu. Speech and feeding specialists can help with nutritional deficiencies and food preferences, says Hall, tailoring their support to the child’s unique needs and capabilities.
Pro Tip: Introduce new foods very slowly, with plenty of warning, and with other “safe foods” you know they like.
Preparing Your Child for Doctor’s Visits
Taking any child to the doctor can make a parent nervous. While all children have trouble regulating their emotions, children with ASD may become easily overwhelmed in a crowded waiting room or unfamiliar surroundings. Check out the tips below to make your doctor visits uneventful.
Strategies for a Successful Doctor’s Appointment
You can do a lot to prepare for a successful appointment with your child’s healthcare provider:
Call ahead to discuss special accommodations your child might need, such as waiting in an exam room vs. the waiting room.
Bring a special toy or comfort item to the appointment.
Tell your provider and the staff about your child’s triggers (lighting, noise, etc.) and how they can offer a supportive environment.
Let your provider’s office know if they may need extra staff assistance for a procedure, like an immunization or exam.
Help your provider prioritize exams or tests beforehand, so they know what they need to do first and what can wait.
Remind your provider to describe everything they are going to do using simple, direct phrasing. (“Please sit on the table” vs. “Would you mind hopping up on the table, there, buddy?”)
Show your child pictures of the office before the visit.
Visit the office for a meet and greet on a separate day.
Practice acting out the visit with toys.
ProTip: Schedule your appointment at the beginning or the end of the day. It will be less crowded then, and your provider may be able to take more time to accommodate your child’s needs.
Dealing With Anxiety and Sensory Overload at a Doctor’s Visit
Even when you do everything right, a medical office visit can lead to a meltdown. “If a meltdown occurs at the doctor’s office, your response is significant,” Hall says. “Meltdowns are usually triggered by the child’s inability to process feelings, fears, or concerns.”
Identifying and removing triggers (like bright lights or loud music)
Avoiding discipline for the behavior
Co-regulating by using a calm voice, coming down to their level, and helping them express their emotions
Offering extra personal space
Asking your child what would help
Playing a favorite song at a low volume
Rescheduling the appointment if needed
Trying a visual distraction like a portable video game or movie
Navigating Specialist Appointments
You can use all of the above tips to prepare for specialist appointments and medical procedures, too, but sometimes they can offer unique challenges.
Labs
Not many people like getting blood drawn, and children with ASD are no different. However, their diagnosis can make a new environment like a phlebotomy room feel overwhelming and upsetting. When choosing a facility, try finding one that is experienced in working with children, Hall suggests.
“An option that not everyone is aware of, especially for lab work, is the use of a numbing cream…,” says Hall. “This cream can make the process less painful, reducing the child’s fear of the needle.”
Pro Tip: During the procedure, try playing a favorite or silly song, using deep breathing or relaxation techniques, or applying pressure to their other arm with a sensory brush.
Dental Appointments
When you are on the autism spectrum, sensory stimulation can be a big deal. At the dentist, the feeling of a rough toothbrush or the unfamiliar sounds of drills whirring and metal scraping on enamel can make a child with ASD say, “No thanks.”
Hall recommends finding a dentist who has experience with high-need children. “A specialized dentist, particularly one well-versed in treating special needs or high-needs children, can provide a more accommodating and understanding environment. They may also offer helpful strategies for your child during the visit.”
Pro Tip: Let your child watch a sibling or an adult have their checkup first.
Anesthesia & Surgery
Children with ASD sometimes experience side effects related to anesthesia, including a regression in behaviors. If you let your child’s surgeon and anesthesiologist know about their autism diagnosis beforehand, they can adjust the medications they use to sedate them.
If your child reacts poorly to an anesthetic, you can ask your anesthesiologist for a list of the medications they received. That way, if or when they need to have sedation in the future, you can ask your provider to try a different sedating medication.
Eye Doctor Appointments
Eye health is important for all children. When kids see well, they can participate in school and stay safe during play. However, eye exams can involve sitting still for quite a while.
If your child feels they see just fine, they may struggle to understand why they need to go to an eye doctor. Let your child’s optician know about their needs, and they can be prepared to help them feel comfortable during the exam.
Advocating for Your Child in Healthcare
If your child has ASD, they have every right to receive the healthcare they need. Below, you will find guidance on effectively communicating with healthcare professionals and tips for advocating for your child like a pro.
Understanding Your Child’s Rights in Healthcare Settings
Your child has some basic rights anywhere they receive healthcare. Healthcare providers and ancillary staff should:
Tell you and your child why they are there, what will be done, and what it will feel like
Answer questions to your satisfaction
Allow you and your child to express emotions and concerns about their treatment and care plan
Listen carefully to statements and questions
Let you stay with your child as much as they want
Give detailed and clear instructions for care at home
Communicating With Healthcare Providers and Specialists
Healthcare providers sometimes appear to be in a hurry, which can discourage questions. To ensure you say and ask everything you want to during a visit, write down all the topics and questions you want to discuss before the appointment. It’s common for the mind to go blank in an exam room, so come prepared and let your notes be your guide.
Understanding Health Insurance and Autism
The ins and outs of your health insurance plan can seem like an impossible puzzle to solve. Let’s look at the basics and then talk about how you can navigate your child’s healthcare coverage and other resources.
Grasping Health Insurance Basics
In the United States, healthcare for children can be covered under Medicaid (a government-funded healthcare program) or private insurance. When you have private insurance, you typically pay a monthly premium to carry the plan. The amount you pay per month can vary widely, depending on your plan, employer, and deductible.
Beyond the premium, you can expect to pay a deductible: an out-of-pocket amount you pay before the next level of insurance kicks in. After the deductible is met, your insurance will pay for a lot more of your services and medications. Your out-of-pocket max describes the maximum amount you have to pay per year before your insurance covers 100% of your healthcare costs.
Navigating Insurance for Autism-Related Services and Treatments
Every insurance plan is a little bit different, so no insurance-related advice covers every situation. Each state is mandated by law to provide coverage for autism treatment under certain insurance plans, but federally governed plans may not offer coverage.
When those medical bills start trickling in, here are some tips for keeping the cost down:
Request itemized bills from your provider/hospital
Negotiate for a lower price if paying out-of-pocket
Ask for a repayment plan
Finding Grants and Financial Help for Autism Care
If you find expenses are mounting even with insurance coverage, you can tap into financial resources and grants available for children with autism. These include:
As you work so hard to give your child everything they need to grow and progress in their young life, the transition to adulthood can seem intimidating. However, children with autism can grow up to pursue further education, get a job, and develop meaningful relationships.
Healthcare Transitions for Teens With Autism
Navigating the teenage years can get hairy for anyone. (Pun intended!) However, teens with autism may need some extra support as they notice changes in their bodies and emotions. The more you can prepare them for these changes, the better they will handle the transition.
Autism Speaks, an advocacy organization, provides a free guide for parents. With this guide (or another of your choosing), you can show your child illustrations of the changes their bodies will go through. You can also discuss and prepare them for new personal hygiene habits like using deodorant and shaving.
Preparing Your Child for Independence & Managing Their Own Healthcare
No one transitions to adulthood or independence in a day, a month, or even a year. The key, especially for children with autism, is to start slow. As your child gets older, start to include them in making appointments and marking them on a calendar or setting reminders on a device. Take advantage of the resources available for those with ASD, like:
“Getting an autism diagnosis can feel incredibly overwhelming,” says Hall. “The sheer number of therapies, appointments, and specialists involved can be a lot to manage. For many parents, it may mean juggling multiple therapies and appointments every week, which can quickly lead to burnout, especially if you have other children, work commitments, or other responsibilities. In this process, it’s essential to take a step back and consider your own well-being.”
Mental Health Support for Siblings and Family Members
You can’t give your best to your child if you are facing burnout. “Parents often tend to put their needs on the back burner, but it’s crucial to address this issue,” Hall urges. “Taking care of yourself and nurturing your own needs is a vital part of the equation.”
The same can go for your child’s siblings. Sometimes, one high-needs child can take more of your time than your other children get. This may be born out of necessity, but doesn’t have to turn into the norm. Encourage your other children to voice their needs. You can also involve them in their sibling’s care where appropriate.
“In this journey, remember that self-care and reducing the stress on yourself are key to providing the best care for your child,” says Hall. “Don’t hesitate to seek support and adapt your approach as needed to ensure both you and your child thrive in the process.”
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