by Nicole Kolenda
As a parent of a child with special needs, you will ALWAYS remember the day you received your child’s diagnosis. You will always think back to THAT conversation, with that specialist, who sat you down and discussed with you their “findings”. Many of you, in this precise moment, wanted so badly to be fully present and listen that you made yourself nauseous trying. Others just blanked out—asking your significant other a litany of questions after, in shock and disbelief. Some of you insisted the specialist was wrong.
Sometimes the path to a diagnosis is not a clear, straight one. You will take your child to many specialists and have more than one test done and you will think you have an answer—and then—it will morph into something different—many children, as they mature, present differently.
I can tell you as a therapist, having an idea of a client’s diagnosis is, of course, important—especially if there are medical issues that we must be aware of. But, any therapist worth her weight in salt will tell you that we DO NOT TREAT A DIAGNOSIS. Let me explain—when a child is referred to me with a diagnosis of “Autism Spectrum Disorder” ASD for speech therapy, this diagnosis does not say much because children of all abilities are diagnosed with ASD every day. Some are non-verbal and require the assistance of pictures or a communicative device (in many instances an IPAD with special software) to communicate. Other children can talk, but have a Speech Sound Disorder (SSD) which makes their speech output unclear and they require intensive speech therapy for this. Many children diagnosed with ASD speak articulately and rather eloquently and their difficulties with clear communication lie in their limited understanding of social interactions or what we call “pragmatic language”. So, as a clinician and careful diagnostician, I MUST see the child first and do my own assessment to truly understand what the needs are and a diagnosis of ASD –is…. well…. just a label.
I have also seen the diagnosis change over time, in fact, this is very common. Many children have been referred to me with Childhood Apraxia of Speech (CAS) at a very young age. With intense speech therapy, a good number of my clients made significant progress within 2 years and our focus in therapy started to shift to language—which can be confusing and unorganized in a child with an early diagnosis of a motor speech disorder.
My typical practice with a new client is to have the parents fill out an intake form, so I can get a clear idea of what the parental concerns are and what the medical and developmental history is, as well as likes and interests. I can also use this information to decide which testing is appropriate and which testing I can skip. Although I do request the child’s previous reports and test results, I do not read them until I see the child first. I do not want my clinical judgment to be compromised by the writings on prior reports. I make sure to share this with the parents so they do not mistakenly think I did not do my “homework”.
Many children are diagnosed with Autism Spectrum Disorder and have a more “pronounced” co-morbid condition that is affecting their ability to learn. When I worked in New York City’s District 75 program, early on in my career, I treated a young boy named Gabriel who was diagnosed with Autism, but when you read his reports and dug a bit deeper, he was also diagnosed with Obsessive Compulsive Disorder.
The Autism diagnosis made sense and many outside observers, not in the field, would describe Gabriel as “quirky”. It was the Obsessive-Compulsive Disorder (OCD) that truly interfered with his ability to interface with society. I learned early on that a student cannot learn if they cannot attend. We can have the most beautiful lesson planned, with all types of homemade, laminated supplies, but if that child cannot focus on the activity-what is the point? OCD is very adept at stealing attention. I watched it work its’ magic on Gabriel—who was particularly concerned with having EVERTHING closed—from cabinet doors and windows to buttons on others’ shirts.
It was impossible for Gabriel to do anything else until he did a scan of his environment and knew everything was…. closed. Then he could relax and focus and LEARN. As you can imagine, there are many items in our environment that “can” be closed, but, aren’t. When Gabriel was in an environment that he wanted to “fix” but couldn’t, that was all he could talk about—and this significantly impacted his social interactions—which was why he need speech therapy—not necessarily because he had Autism.
So, you may be wondering… What is a diagnosis good for?
- Attaining Early Intervention Services (EI).
- Getting Insurance reimbursement for therapy and evaluations.
- Getting amendments to your child’s Individualized Education Plan (IEP) for much needed supports in school.
- Getting Social Security Disability Benefits.
- Having an idea, in broad strokes, what types of intervention may be “better” for your child than others. Although this is an individual path so it may just point you in a helpful direction.
The bottom line is, your child is a unique combination of strengths and weaknesses (aren’t we all?) and the right therapist will take the time to figure out what makes your child tick, what makes your child light up and what individual goals your child should be working on to become more effective communicators and better equipped to deal with home life, school life and social gatherings. The idea here is that your therapist is treating your child, not a label—any good therapist will tell you–We Don’t Treat a Diagnosis!
Nicole Kolenda, M.S., CCC-SLP, P.C., is a NYS licensed/ASHA certified Speech and Language Pathologist with twenty years’ experience working with children and young adults diagnosed with Developmental Differences. Nicole ran a thriving practice on Manhattan’s Upper East Side for 15 years and has taught and supervised throughout New York City’s elite graduate programs, including Teacher’s College and New York University. Nicole has also collaborated with Manhattan’s top rated developmental pediatricians and has contributed to research in the area of speech development. Nicole continues to adjunct at NYU and Hofstra and is a supervisor/externship coordinator at the Hunter College Center for Communication Disorders. Nicole is also the clinical coordinator for the Atlas Foundation for Autism and frequently writes for parenting magazine and blogs. Most recently, Nicole has joined the team of Write Brain Books as a special needs products and program consultant. Her unique combination of training (including a health and wellness coaching certification from the Institute of Integrative Nutrition) and experience has also allowed her to seamlessly support the special needs community as a Special Needs Mom Coach. You can learn more about her at www.nicolekolenda.com. Facebook: https://www.facebook.com/NicoleKolendaSLP/ Twitter: https://twitter.com/NKolendaSLP