I get this question a lot, especially from a new family who is perhaps on a waiting list for a medical diagnosis but are starting the process for an educational diagnosis of autism in order to start services at school. It's not even a question, really; many people (parents and educators, alike) may not even know there IS a difference between an educational diagnosis of autism and a medical diagnosis of autism. But, it's important to know and understand, especially if you're getting on this rollercoaster for the first time. Some important information before we go into the differences:
What is the first step?
In the medical field, all children should be screened specifically for Autism during regular well-child doctor visits at 18 months and 24 months. This is a recommendation from the American Academy of Pediatrics. If your pediatrician has NOT talked to you about this screening and you have ANY concerns about the development of your child, speak up! (See #1 here.) You may even get an earlier or more frequent screening done if your child is at high risk for ASD (e.g., having a sibling or other family member with ASD or other developmental delays, problems due to pregnancy or birth complications, etc.).
The type of things a pediatrician should be observing even before they do an official screening will be shared enjoyment (giggling in response to an interaction, eye contact in anticipation of something like peek-a-boo, pointing or waving, fear of the doctor, and so forth) and communication (more focused on what he or she understands than speaks at this age such as responding to name or other simple commands).
Most offices will then use the Modified Checklist for Autism in Toddlers (M-CHAT)â„¢ . You can also see a .pdf version of it here. It's 20 quick questions that can be observed or answered in one sitting, so it's nothing time-consuming. Questions like, "Does your child ever play pretend or make-believe?" and "When you smile at your child, does he or she smile back?" are the type of questions you'll get asked. Remember, this is just a SCREENING. In other words, the doctor is just putting you through the first hoop to see if another hoops need to be set up for you.
Who can make a diagnosis and what does it entail?
The next hoop, if there are concerns from you or your pediatrician, is to get a formal diagnostic evaluation for Autism (ASD). Your pediatrician should refer you to a specialist. This is typically a Developmental Pediatrician (doctors who have special training in child development and children with special needs), Child Neurologist (doctors who work on the brain, spine, and nerves), Child Psychologists or Psychiatrists (doctors who know about the human mind). A comprehensive diagnostic evaluation may include: looking at the child’s behavior and development, interviewing the parents, hearing and vision screening, genetic testing, neurological testing, and other medical testing. Yup, it can be that thorough. See #3 in the blog post here about the waiting process.
I can tell you what our three evaluations were like. Keep in mind, this was 20 years ago. At the time, waiting for a full-scale comprehensive evaluation at a developmental center was not as common as it is today. We went first to a child neurologist who we think was probably on the spectrum, himself! He spent about 20 minutes talking to us and observing our son as he played with letter blocks (building them in a tower over and over). He then turned to us and said, "I think you already know." We didn't get a lot of direction or hope, but we had a diagnosis in hand, so we started doing our own research. While we move forward in our journey, we found a different child neurologist who we "clicked" with better, and we saw him for many years. He confirmed the first diagnosis, sort of in the same manner (observation and interview). A third person was referred to us by a wonderful family member in the field, but she was at the university research center, so it took almost a year to get in to her. By that time, we had been running an ABA program and seeing great progress. I had actually hoped we'd get a little different result from that evaluation, but that was in my early years of denial. They did a lot more direct testing with him, did some cognitive tests and direct observations. We were there a couple of hours. Result was the same. Hey, third time's a charm, right?
So here are the major differences you will experience between a medical evaluation and an educational evaluation:, and this can usually happen in a much quicker fashion than a comprehension evaluation at, say, a large developmental center. I always recommend this. Actually, I recommend a parent get into anyone they can as early as they can and AT THE SAME TIME, put themselves on the waiting list for a full-scale evaluation and wait for that also to come up. No sense in waiting so you can access services if needed, but a lot of good information comes out of those comprehension evaluations, so it's also good to still get those.
So back to the subject at hand.
What is the difference between medical and educational diagnosis?
It's important to say something here about the educational options afforded to you. I will do another blog post about specifics, but suffice it to say that as soon as you have concerns about the development of your child, you do NOT need to wait for these full medical evaluations before accessing educational services if they are warranted. Please, if you have concerns, contact your local school district and tell them that you have concerns about the development of your <age> child, and who can you talk to about getting a developmental screening. They should be able to direct you to who to talk to to start the process (depending on the age of your child).
So here are the major differences you will experience between a medical avaluation and an educational evaluation:
Who performs it?
Medical: Performed by medical specialists with specialized experience
Educational: Performed by qualified school personnel, typically the school psychologist
Do I need it to receive medical funding (medical services such as clinical ABA, OT, etc.)?
Medical: May qualify for medical funding; will be referred out by the specialist and/or dependent upon your insurance coverage
Educational: May not qualify for medical funding; insurance typically will require a medical diagnosis for clinical services, but always check with your insurance provider
Educational Impact
Medical: Impact in educational setting not required for diagnosis; While this information is useful for making a diagnosis, it is not required for your child to demonstrate that their symptoms have an effect on their ability to access learning opportunities at school. Medical professionals are looking at the medical diagnosis and seeing if your child fits under those requirements alone.
Educational: Impact in educational setting required to qualify for services; This is where it gets a little tricky. In the educational setting, the evaluation team at your school district has to determine that your child's symptoms (in this case, autism symptoms) have an adverse impact on their educational learning. This means that if, for some reason, you have a very high-functioning kiddo who is academically at or above grade level AND is able to "keep it together" or mask their social and behavioral challenges during the day at school, meaning he or she can get by during the day in the regular classroom without needed intervention, then he or she MAY NOT qualify for an educational diagnosis and services. That doesn't mean he or she doesn't have autism or isn't a true handful at home; it just means that they've figured out how to use their tools to get by during the school day. I have stuff to say about this (I feel another post coming on at some point!), but for the time being, be it known that this is just how it is right now.
Just because you have a medical diagnosis of autism does NOT guarantee you will get services at school. So my piece of advice is to make sure you don't downplay any of the challenges you know your child has, especially as it relates to access to school learning.
What do they use to diagnose?
Medical: Use of standardized assessments and observations in the clinic setting; You'll probably be given a lot of forms to fill out asking about the development of your child and challenges, and they will hopefully do direct observations and assessments. It's unlikely any medical professional will come to school or home or the park to do any sort of direct observation there. They are looking for symptoms that fit into the diagnostic criteria.
Educational: May use standardized assessments but also may simply use observations and interviews. They will talk with your child's teacher and ask for their input as well as do observations of them in the classroom or other settings. They may use the child's medical evaluation report and results of assessments to help their decision-making. They are looking for symptoms that affect their ability to learn at school.
What areas do they look at?
Medical: Looks at functioning across all modalities and settings; They want to know about diet and eating habits, sleeping habits, how they do at the dentist office, how they interact at home with siblings, as well as other challenges.
Educational: Generally focuses only on functioning in school environment (and need for specially designed instruction); While knowing about their eating and sleeping habits is helpful to know once they qualify for services, this information is not generally required for the initial diagnosis and approval for services. They just want to know "how does s/he look at school?"
General requirements to qualify for educational services
So here it is, the quick synopsis of how to qualify for services at school under the guise of Autism Spectrum Disorder:
• Has documented evidence by the school team that there are impairments in communication, social interaction, patterns of behavior that are repetitive, restricted or stereotypic, and unusual responses to sensory experiences
• Has impairments inconsistent with his or her development in other areas
• Has these impairments documented over time and/or intensity
--AND--
The school team must also determine and document that:
• The disability adversely affects the student’s ability to learn
• The student needs special education services as a result of the disability
I will have more to write about regarding the process of accessing educational services soon!