For some children, it begins with a routine checkup at the pediatrician’s office. Maybe the parent voices a concern, or perhaps the doctor notices that not all of the child’s developmental milestones are on track. The doctor might do a basic Autism screening and refer the child for further testing, if the results of the screening indicate that it’s necessary.
For others, it happens more slowly, quietly.
The teachers notice some differences in the classroom. Perhaps the child is having a difficult time socially. It’s possible that he has some endearing quirks, intense obsessions, or a very bright — but very different — way of thinking.
As he grows older, the differences between him and his peers seem to widen, at first just slightly, and then more. The question might enter his parent’s mind on cat’s feet, tentatively, hesitantly: is this child on the autistic spectrum?
Whether he’s an 18-month-old on a pediatrician’s exam table or an 8-year-old behind a second grade desk, it’s never an easy age to come to terms with a possible diagnosis.
Why should I slap a label onto my child?
Often, it’s clear enough that a child needs help. What’s less clear is whether a diagnosis is necessary in order to get that help. The next time you ask yourself, “remind me why we’re doing this, again?”, keep these basic pointers in mind:
Clinical Clarity
First and foremost, we’re looking for clinical clarity. If you knew someone with persistent stomach pains or migraines, wouldn’t you encourage them to get it checked out? Behavioral symptoms aren’t imaginary just because they aren’t physical, and they should be checked out as needed. (Sometimes, clinical clarity means going through the evaluation just to find out that this child does not, in fact, have ASD. And while you’ll still want to set them up with the help they need to succeed, having ASD ruled out can allow you to take a different long-term approach.)
Adjusting Expectations
The biggest gift of a formal diagnosis is that it allows you to gain a new understanding of the person, including their strengths and challenges. Within the framework of a diagnosis, what started off as a whole collection of seemingly unrelated problems and quirks can become something that suddenly makes perfect sense. Having a better picture of what your child is and isn’t capable of achieving will help you set realistic goals and celebrate each accomplishment appropriately.
Planning Intervention
Issues can only be treated properly when the root cause is known. The knowledge that certain behaviors and tendencies are a result of a specific disorder allows you to plan interventions and therapies that are evidence-based for ASD.
Program Placement
When a kid struggles with “a little of this and a little of that”, the expectation is that she’ll remain in a mainstream classroom with whatever supports she needs to stay afloat. But when she has an accurate diagnosis to put her challenges into context, that may give more room for the adults in her life to take a step back and consider whether she might do better in a special ed program. Can she succeed in mainstream, even with ASD? It’s entirely possible. But coming to that mainstream-placement decision from a place of clinical clarity rather than pressure or status quo is important.
Service Eligibility
Okay, this is the biggie. There are kids — many, many kids — who need all sorts of help, but they can’t access it, because they don’t have a qualifying diagnosis. With ABA services, for example, this comes into play regularly; insurance is most likely to cover ABA services only if the child has a diagnosis of ASD. (Is wanting a service for your child a reason to give him a diagnosis? Now, that’s a controversial point that we won’t debate right here. Let’s put it this way: if the only thing standing between a service and a child who needs it is the lack of a formal diagnosis for a disorder that the child likely does have, it may not be doing him a service to withhold that label.)
Will this come back to bite us later?
One of the concerns that many parents have when considering an ASD evaluation is whether the diagnosis is going to “stick” and cause problems down the line. Aside from the fear that people might treat their child differently due to their disability, some are also worried that their child will no longer meet the classifications for an ASD diagnosis in the future, and it may stain their child’s record in some way.
People like to call a diagnosis a “label”, like it’s displayed on the child’s shirt for all to see (Hello, My name is Chaim and I have Autism), while the reality differs slightly: you can choose to share the diagnosis at your discretion; this isn’t going on a public record.
An ASD diagnosis may be saved on your child’s IEP (and if you got the eval privately, that’s only if you report it), but you are lucky if the classroom teacher reads the IEP through — let alone your future mechutanim. The way your child presents herself in public is what will make an impression on others; different behavior will be viewed as different whether or not there’s a diagnosis, and the same goes for typical behavior.
If your child is struggling in the here and now and will benefit from clarity, understanding, and support services, you can give yourself permission to prioritize today’s needs without dwelling on future consequences.
Gotcha. So what’s the process?
Psychologists, neuropsychologists, psychiatrists, neurologists, and developmental pediatricians are all technically qualified to diagnose ASD, though their methodology differs.
One thing you’ll want to bear in mind is that different support services might require specific ASD testing, so while a doctor may be able to provide a formal diagnosis, that alone might not be sufficient for certain services (such as ABA, which may require a full ADOS).
In NY, children under the age of 3 can get an evaluation and receive ABA for free through Early Intervention. School-aged children often received ABA through their insurance (though most agencies will offer it through private plans rather than Medicaid), but the preliminary ASD evaluation is often outsourced and paid privately by the parent.
If you think your child would benefit from OPWDD services (NY’s services for people with developmental disabilities, providing care management, respite, and more), the OPWDD agency may be able to arrange testing for your child through Medicaid.
Although it’s costly, many parents opt to pay privately for a skilled diagnostician who has a shorter wait time and can provide the clinical clarity and direction they need.
If you’re willing to wait (at least several months, and sometimes a year, or even two), you can have your child seen by a developmental pediatrician through most insurances. A developmental pediatrician can do a very comprehensive evaluation, provide a diagnosis, and continue to follow up over the years to consult regarding appropriate program placement and interventions.
Every situation is unique — that’s what Ezreinu is here for. To receive personalized guidance, please reach out to our office at 718-750-1010.
Mr. Davidson was searching high and low for a pediatrician for his son, Yoni, who had several medical issues which their family pediatrician wasn’t equipped to deal with. The problem was that he couldn’t find another recommended pediatrician who accepted Yoni’s insurance. Mr. Davidson reached out to Ezreinu and received a referral for a great pediatrician who was knowledgeable in this area — and accepted the insurance without a problem. 🟦
Shimmy had finally gotten a once-a-week slot in a great therapy center, but the only available appointment was on Tuesdays, when his mother worked a longer day and couldn’t take him. She finally found someone who would be able to drive him, but Shimmy needed constant supervision, even in the car. She called Ezreinu, and was connected with a volunteer who was able to accompany Shimmy for the ride each week, enabling him to get the therapy he needed. 🟦
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