When I was in grade school, autism was practically unheard of. Most of the focus back then was focused on hyperactivity in children where teachers made sure kids weren’t eating too much sugar at lunch. Fast-forward a couple decades, and we now know that ADHD is a common disorder that can co-occur with autism, is much more complex than simply avoiding sugar, and is on the autism spectrum.
Nowadays, it seems that almost anyone can claim to spot a person with autism, even those who have no formal training or who don’t have a family member living with autism. This can become a slippery slope where misdiagnosis, stereotypes, and misinformation can run amok, making it even more critical for understanding how autism is diagnosed and where to find appropriate specialists for your child or family member.
Current statistics report that approximately 5 million Americans are living with autism, with an average of 1:59 children (1.7%) of the population being diagnosed annually. Part of the increase in annual cases is due to better quality assessments, faster turnaround in diagnostics, and earlier intervention. Other factors include more public awareness into the disorder and its commonly reported symptoms.
However, even with earlier intervention and more options available to families, finding a specialist can be a very stressful time for parents. Questions like, “Who?” “Where?” “How much?” “How often?” and “What can I expect?” are extremely common for caregivers to ask, and it’s equally common to feel nervous, scared, or overwhelmed.
We’re here to help.
Types of Specialists
There are many types of specialists that you’ll probably become familiar with in your autism journey. Words like “pathologist”, “psychologist”, “dietician”, “neurologist” and “occupational” will probably become part of your new vocabulary. If you’re not familiar with these words now, please don’t be alarmed. We understand that it can be nerve-wracking, and you’re not alone.
“Any specialist you choose should be accredited, properly credentialed, and have the skill-set to be able to support you and your family along your journey.” – The Autism Analyst
For example, if you’re looking at a formal diagnosis, a neurologist should have credentials which commonly include “M.D.” (Medical doctor). Behavioral or developmental pediatricians should have similar credentials such as “M.D”, but many also include “A.A.P.” (American Academy of Pediatrics), or “Board Certified in Pediatrics”. Psychiatrists (“M.D.”) may also be included as a specialist if it’s recommended that your family member try medication as part of their intervention. Clinical psychologists may also provide a diagnosis, if your insurance authorizes it.
One of the most common specialists you will probably become familiar with is a “Board Certified Behavior Analyst” (BCBA) who often specializes in creating, tracking, and implementing programs specialized for a child or adult with autism. This is a person who typically holds a Master’s Degree (either “M.A.” or “M.S.”), or may hold a Ph.D., and be a doctor.
As a primary caregiver, you may also want to consider their Curriculum Vitae or any organizations that a specialist is affiliated with. For example, it’s refreshing to see that a pediatrician is a “committed advocate for children and families” or that they are actively involved in academic-based work that supports autism or developmental research. Similarly, it’s cred-worthy to see that an a Board Certified Behavior Analyst has additional academic or professional training in behaviorism or behavior modification.
Most specialists will be seen at their office, or at the regional or county center near you. Given that Covid-19 has changed much in the medical industry, it is now common practice to have a telehealth meeting from the convenience of your home. However, in addition to meeting at their company, behavior technicians and BCBA’s will often arrive at your home for parent training or to work with your child.
A common question that is asked by caregivers is “How often will we need to see them?” Depending on where you are in your autism journey, it’s very common to see neurologists, psychologists and/or behavioral pediatricians several times (approximately 3-8 times) within the first few months. So, freeing up time in your schedule is something to consider. Also, once services have begun, it’s pretty common to frequently see a Board Certified Behavior Analyst at your home as part of the 1:1 supervision and parent training. Other specialists such as behavior technicians who work directly with your child or family member may be seen most frequently, especially if services are authorized for several sessions a week.
What Can I Expect?
Ask. Ask. Ask. Jump online and look for what questions to ask at meetings with doctors or other specialists. For example, if beginning 1:1 in-home behavior therapy, some common questions asked may include:
How many days/hours a week?
Will there be parent training involved? If so, how many hours/days a week?
Who is the case supervisor and their contact information?
A good suggestion is to keep a journal of questions you may have as they pop up, and for what specialist the questions are for. Then, as you meet with those specialists, your questions can be answered.
Finding a Specialist
A great place to start is with your insurance company. Ugh, right? But, aside from the paperwork and many phone calls to different departments, it is suggested to know what benefits your insurance offers for children or young adults living with autism who are covered on your policy. For example, some insurance companies want referrals from your child’s primary doctor before they will authorize consultations with psychiatrists, Board Certified Behavior Analysts, or dieticians. Other insurances won’t authorize these services nor reimburse for out-of-pocket costs, so it’s important to know about potential barriers.
After confirming what benefits are offered, many regional or governmental agencies in your local area are a good place to begin. Most regional or county centers offer resources, educational support for families, and often include the process for obtaining benefits, such as 1:1 home therapy, dieticians, or speech pathologists.
Baio J., et al. (2018). Prevalence of autism spectrum disorder among children aged 8 years: Autism and developmental disabilities monitoring network. MMWR Surveillance Summary, 67(6), 1–23.
Myers S., & Challman C. (2018). Autism Spectrum Disorders. In: Developmental and Behavioral Pediatrics. American Academy of Pediatrics, 407–475.